Bipolar in the teen years and beyond in rural Iowa, Just Ask Mom episode 18

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Jill discusses caring for her son whose bipolar disorder surfaced during the teen years. She describes the lack of resources in rural Iowa, the criminalization of mental illness and how that affected her family. She explains how this journey as a mother makes you learn who you are as a person and how strong you can be.

Transcription

[music]

Female Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today we will listen to Jill, a mother from Iowa, share her story about raising a son with bipolar disorder.

Tammy: Thank you for doing this. We really appreciate you being here.

Jill: Absolutely.

Tammy: Before we get into a lot of the content could you tell us a little bit about yourself before or outside of mothering, who are you? What are your passions? What are you interested in?

Jill: It’s a great question. Well, first of all, I think I’ve known since I was five years old, probably or even before that I wanted to be a teacher. My grandmother was a teacher, my aunt was a teacher. I would have to say that was my focus through high school. I went to college, I’m a teacher and I’m very passionate about it, very passionate about early childhood education. I currently decided to personally take a step back and decided to work on my Master’s degree.

Tammy: Wonderful.

Jill: Yeah, between doing that and teaching full-time and having two children, let’s say two teenagers at home. [laughs]

Tammy: You’re busy.

Jill: It’s busy. When I have a free second to breath and if I’m not writing the research paper or discussion thread I am spending time with my family and friends. That’s very important to me. I like to exercise, I love to be outside in the summer in my flower garden. That’s kind of me by myself.

Tammy: So you knew early on what you wanted to do?

Jill: I did and I think that doesn’t happen a lot.

Tammy: No.

Jill: I I think a lot of children these days are just full of pressure. “I don’t know what I want to do. I don’t know what I want to do”, and I just tell my boys I hope it’s just a lucky one. So, 20-some years I’ve been in it and I don’t ever see myself do anything else.

Tammy: Oh, that’s wonderful. You love it, that’s great.

Jill: I do, yes.

Tammy: It’s a gift when your passion can become your work.

Jill: Yes, absolutely.

Tammy: Absolutely. I want you to pretend that you’re talking to other parents. What do you want them to know about your experience as raising a child with a mental health condition? What would you want them to know?

Jill: I would say number one, trust your instincts. If you see something maybe that is out of character for your child, maybe something that differs from what they have “typically”, how they’ve been acting. I guess just picking up on those little cues. I look back over the journey with my son it’s been three years. Three years and three years now has gone by and I look back at some of the things and say. “Wow, I wish I would have been– went with my gut more than I did”. Does that make sense?

Tammy: It does. Now with your son, was there a clear before-and-after of an onset of symptoms, did it sort of come on at a certain point in his life or did you always see it his whole life, or?

Jill: No. We did not see it early on in life at all. There was no signs or symptoms at all. Probably started seeing it at the age of 15, his hormones were really coming on. When we first started seeing signs like I said looking back impulsive behaviors and things that typically hadn’t been characteristic of my son, but because some of it we kind of blamed on, “Oh, he’s a teenager. Oh, he’s sowing his oats, he’s doing this”, but then he would be fine for a while. Then well, we’d have another as well, I say now an episode of just uncharacteristically behaviors. I should have went with my gut more than I did but I did try to get some help right away, but that was difficult and that probably will come next.

Tammy: Yeah, tell me about that because let me just go back to one thing.

Jill: Yes, please do.

Tammy: You’re bringing up a really important issue because when you’re dealing with children’s mental health, there’s a whole gamut. Some kids have things from very young like Tourette’s usually comes around to age seven, for instance, but a lot of kids have conditions that surface during the teenage years. That’s when the conditions start to have their first symptoms. As you said it’s hard to know is it just being a teenager or not.

Jill: It completely was because from birth up to that point he had been a straight A student. He had been an austere athlete. He had been the kid that never broke a rule, if there was a line he was going to walk it. That’s why I say trust your instincts because as mothers we know our children better than anyone else in this world. When he was behaving some of these behaviors I’m like, “This is– Okay, I’m not sure. Are we this pushing? Or a teenager–“. Like I said we even went with were there drugs involved because drugs are so rampant in the high schools and things that I was not aware of. I guess maybe naive and I had to open myself up to that and wow, what started were these outbursts, I say outburst because it was the change of behavior. His grades started slipping a little. Socially he started secluding himself from his friends. There would be days maybe even weeks he would just stay at home on the couch and he’d want the curtains closed, and he just wants to watch movies with me. You know, “Okay, well, honey” and his friends would come over and say, “Come on, bud. Let’s go.” Typically before this kind of came on sure he would go. He’d love it, very social kid. Then there’d be times where we get over of laying on the couch. Then we would– he particularly, I remember, got in his car asked could he go to the mall to the nearest city and I said, “Sure, okay”. Called me, got a speeding ticket, was going almost a hundred miles an hour.

Tammy: That’s so dangerous.

Jill: Yes, and this was just a few days after we’d been laying on the couch for a while. Then I got him home and said, “Okay”, had the whole typical teenage speeches, had the whole, “We’re going to take your car”, and then two days later gets another speeding ticket. He was going 95. It was just so mind-blowing because my whole mommy gut, I call that, what’s going, “What is going on”, and so that’s when I’m like, “Okay”. Started in with therapist number one.

Tammy: Talk about that. Why was it hard to get help at first? What was difficult at that time?

Jill: I will be completely honest and people probably don’t want to hear this but I know as a mother I wish somebody would have told me, Iowa is horrible for mental health. I had been born and raised in the state and I will probably live in the state for the rest of my life, but I am highly disappointed with the services and help that we have. From just doing some readings I think we’re one of the worst states in the United States of America.

Tammy: We are. I can feel what you’re saying  – because if I hear what you’re saying  –  this is where I’m at –  me– I don’t want read this in –  but I love Iowa. There’s so many wonderful things about our state but this is so disappointing.

Jill: It is. It’s – it’s heartbreaking.

Tammy: It’s heartbreaking, yeah.

Jill: It’s sad and the first thing I did was say, “Okay, I need a professional” because I am a teacher. I am not a doctor. I just told my son, “Hey, I think we need to talk to somebody to figure out what’s going” because he was talking to me but not really. I think he was not sure, I think, what was even going on with himself. That’s where I was like, “Is this his hormones? Is this puberty has set in?”. He has a later birthday so he is a younger one for his class. I went and got a therapist number one, I say because it’s a long…. So went and he just– it was very difficult. He wouldn’t open up. That’s what we tried first. Then, unfortunately, he attempted suicide.

Tammy: I’m sorry.

Jill: Oh, yeah. It was hard. I can talk about it now because it’s been long enough but I think it was more of a cry for help like I’m stuck in my own body and I’m not sure what’s going on. I came home and he was wanting to sleep, he wasn’t sleeping at night. That was another mommy gut thing where the kid that always slept at night wasn’t sleeping at night. He decided– I saw this package of pills and I’m like– he’s like, “Mom, mom” because just he’s so smart and he’s such a wonderful kid.  And he’s just like, “Mom, I didn’t know what else to do but I took all those Benadryl and I went”. “Excuse me?”. He’s like, “I just can’t do it”. “You can’t do what?”. He’s like, “I can’t not sleep and I can’t, my head is racing. My thoughts are racing”.

Tammy: He’s suffering.

Jill: He’s like, “I just need some rest”. I’m like you know the mother, “Oh, my gosh”. He admitted doing it. We went to the hospital and then they once you go to the hospital with an attempted suicide then, you kind of get a little more help. Unfortunately, we had to go through an episode like that to get a little more help. We moved on to therapist number two which also involved medication. He hadn’t been on any medication until that kind of botched attempted suicide or just attention-getting. I’m not even sure what do we call it now.

Tammy: Clearly he was in deep pain and needed help.

Jill: He did. I think that’s–

Tammy: We take it all so seriously. We need to. Absolutely.

Jill: Yeah, we need to and there was no way, and I wasn’t going to take him to the hospital because his father had said to me, “Well, does he really need to go to a hospital?”. He took several Bendadryl and I think this is a tipping point where he looked at me and said, “I just can’t take it anymore. I need some rest. I need to stop my head from spinning”. I don’t even know because I wish I could– I’m not in his shoes. I didn’t know.

Tammy: How could you?

Jill: How could, how can you?

Tammy: Did the hospitalization was it a relief for him because sometimes it can be really– it can go either way, especially for a teen. It can be such a relief to know there’s a place you can go.

Jill: I think looking back on it because that was three years ago, I think looking back on it, I do think there was some sense of relief but there was also a sense of shame.

Tammy: That’s something we should talk about because that’s something we need to change.

Jill: It is.

Tammy: He’d go to the hospital if he broke his leg, right?

Jill: Yeah.

Tammy: He won’t be ashamed of that.

Jill: Oh, no.

Tammy: Poor kid. He’s ashamed of a health problem that he can’t help.

Jill: Yeah. I think that that was the worst thing is to watch be ashamed and embarrassed. And me was just starting to have my eyes opened. I wasn’t, I had to be strong for him but I had to convey to my 16-year old that this is that we can talk about this. That it’s okay to talk about. They put him in some day treatment. It happened to be during the summer and he went to a hospital in the city is nearest to us during the days for some day treatment. I would drop him off and pick him up. That’s where they wanted to start a medication and he started his first medication. I said first because there’s some things that happened as they change and grow and figuring that out. He responded pretty well to the day treatment. The medication I could say no.

Tammy: It didn’t work, it wasn’t the right one?

Jill: No. That leads into my next thing. Number one was trust your instincts. Number two, be persistent.

Tammy: Yes, because it’s a long journey getting the right med.

Jill: Huge.

Tammy: Something that works for years all of a sudden cannot work, so you’re right. That’s something, a muscle you need to keep throughout your life, right?

Jill: Yes, be persistent.

Tammy: Be persistent.

Jill: There are really so many as we call them, as I say we is– his dad and me – we said there are so many pieces to the puzzle of someone that is suffering from a mental illness. To get the pieces to fit your puzzle to make it look like a nice picture takes time. I remember back when we went to just the scenario, I was explaining when the first time we had the hospital stay and the treatment at the hospital was, be patient, it takes time. You do not want to hear that and I was angry, very angry. No, my son has strep throat I want a medicine that’s going to make him better. No, my son broke his arm I want to cast and in six weeks it’s coming off. My son has a mental illness, I want at least something that can give him some relief.

Tammy: Now.

Jill: Now. Tell me in six weeks it’s going to be better. They can’t.

Tammy: They can’t.

Jill: Nobody can until you try it. Well, we tried this medication and give it six to eight weeks. Whoa. It was causing I would almost say his– my son is recently officially been diagnosed as bipolar, so now we know. It’s been a long few years but I would say the first medication he was on brought on more the manic.

Tammy: Oh, yeah, that can happen too.

Jill: It can and we did not know that but it was more manic and more just random behaviors that were unlike him. Finally, when I say be persistent, I went and I said, “No, we can’t do this. This is not working for my son”. Then we changed to medicine number two, try that six to eight weeks, you have to make sure it works. I’m honestly not even sure. At one point I kept a list of medications that we’ve tried.

Tammy: Keep those lists, those are really important, yeah.

Jill: I do. I have the list and I try to update it as much as possible when they change him. This probably now currently, the stories I was telling you and he was 15 going on 16, my son is now recently turned 19. He’s been on the same medication regimen, main medication regimen for almost a year or a little more of year.

Tammy: It’s working well?

Jill:  It’s working well, he’s responded well.

Tammy: Oh, that’s wonderful.

Jill: We’ve recently had a little bit of a breakdown but we added something that kind of is just so I would say be persistent.

Tammy: Being persistent, that’s really important. One thing just from my own experience that I’ve learned that I didn’t know because I agree with you, it’s impossible as a mom to be patient. You want your kid better now. Sometimes medications that fail, as horrible is that is, that information helps with the diagnosis later. That helps them figure out, “Oh, that’s what’s going on”. That journey is really hard to go through but all that ends up being helpful to figure out what’s going on. It ,ay take a few years but I think it’s helpful when you’re in it to know that. That this may seem like it’s awful right now but this may be giving my child’s psychiatrist great information a year from now that he’ll know what’s going on.

Jill: Document it. This did not work for us.

Tammy: Exactly.

Jill: That’s like I said trust your instincts, go with your gut, be persistent. Those are two main things that now looking back I wish someone would have said to me.

 

Tammy: Yeah, because you have a wisdom as a mom. Our society doesn’t always give us the feedback of how that is so worth, what that’s worth, which is so important. I think that’s great advice.

Jill: Yeah, and I think it’s okay to feel every single emotion in the universe because there were times where you’re just so angry that you can’t control the anger within yourself or at maybe it was directed at someone because you thought they didn’t do enough or you just cry, or why did this happen, or you feel so sad for your child because they’re suffering, not suffering but just they are.

Tammy: They are though.

Jill: I guess it’s suffering it’s– and he’s at that age is, if they can describe it –no- they’re trying. My son, his experience was all of a sudden this hit us at this certain point in life. Well, I’ve never– he never known what this feeling was and so yeah, that’s tricky.

Tammy: You said something I want to follow up on if it’s okay?

Jill: Yeah, absolutely.

Tammy: Because I think it’s another very common experience for us mothers and caregivers that you had to hold your emotions together when your son was going through this. Let’s be honest, we have a whole lot of emotions watching our kids go through this. You’re right, we have to sort of put them on hold. How did you take care of you when that or come back to processing that, and I say this not like because I don’t know how I figure it out either. I don’t know that I’m doing it. I think it’s something we need to talk about as caregivers and as mothers because it’s a very emotional journey we’re on but we don’t often have time to attend to our emotions because we’re literally constantly helping our kid navigate theirs.

Jill: Yeah, and I think it’s important to yourself as a mother. We as mothers stay strong for them because we feel like we are that constant. I feel like I am my son’s strength when he cannot be strong. I have to be strong and not waver and almost like I compare it to an outside of body experience. Okay, I’m going to put me over in the corner for now and this stoic, non-emotional machine that has his mom’s face on it is going to be her. Because right there I’m over in the corner because if I was here I would be a blubbering emotional mm-mm.

Tammy: That’s a great description. I’m sure a lot of our listeners  – I know I can relate to that, that just sounds so familiar to me.

Jill: And to myself. I get back in– my son had the worst, excuse me but, he had a really bad episode at Christmas. One of the many therapists that he had been to which we thought we had gotten a good one, and they’ve been going for about a year, decided that it was okay that maybe he didn’t need to take any medication because we hadn’t had a clear diagnosis. Okay, all right, well, he’d been doing so good and graduated high school, got himself a full-time job, had his own apartment. Then she said, “Let’s just try without”. Of course, my son being a man doesn’t want to have to rely on medication, “Sure, if a doctor tells me I don’t have to, it doesn’t have to”. Long story short, six weeks later manic episode to the full-blown worst episode I have ever seen and he’s 18 years old. I had to pull myself together and I found my own strength that I never thought I had, ever thought I had.

Tammy: You have to be fierce for this job.

Jill: Fierce is a very good word. Fierce, strong, whatever you need to do to get through it. I would say I have learned more about myself. I am 44 years old and I probably know myself better than I have in my entire life.

Tammy: This will do that to you, won’t it?

Jill: It will.

Tammy: It really will.

Jill: And that’s good. It’s okay but I thought I knew myself. I didn’t know myself. I didn’t know the strength that I had as a mother. I think that’s good but how do– I guess going back to your original question, I’m sorry, but how do you how do you take care of yourself? Well, after you get your son settled in the hospital or the care facility or home, wherever they end up being, I went back to the corner and I picked myself up, took my shell off. In the privacy of my own time, in my own place, I felt those emotions. You have to feel them at some point, you can’t bottle them out.

Tammy: They’ll come back to haunt you if you try.

Jill: You will have some major– you need to talk to a professional. You can talk to a relative, a friend. If you are spiritual, talk to your spiritual leader. Do something that you can get those emotions because you’ve got to feel them, you have to feel them.

Tammy: This is where support groups and things like that can also be really useful as well.

Jill: Support groups, absolutely, find someone in your support group because I’m telling you we if as mothers as parents out there, even if you’re not a mother or a father or just a caregiver, you need a go-to person or you need a go-to way to let those emotions go.

Tammy: Yeah,

Jill: Because I know we all as caregivers want to be strong and yes, but you have to remember to deal with your own personal.

Tammy: Absolutely.

Jill: You do.

Tammy: Thank you for that. I think that’s something we need to hear and remember.

Jill: Yeah.

Tammy: So, this is a lot but I’m wondering if you can think back in the past three years about something that has been a barrier to getting help you’ve talked about some of the challenges with finding the right medication and so forth. Has there been something that’s been a barrier or you tried that didn’t work or that you wish would have been different? You wish should be different for people going forward that you experienced?

Jill: I think you all those things you mentioned were barriers. I’m just finding the right fit but I do think I’m going to go back to it a barrier is where I live.

Tammy: Hmm,

Jill:  Not only the state of Iowa that I live in but the county that I live in and my state of Iowa, very limited resources.

Tammy: Hmm,

Jill: We do not have a hospital in the county I live in. So, when I want to– I’ve committed my son twice when I did the committal there wasn’t  a county that had no hospital. So, took him to the county over where the big city is and they kicked me out because they didn’t have to treat my son because he’s not their problem.

Tammy: Really?

Jill: Mm-hmm. because we’re not residents of their county.

Tammy: I don’t realize that they could do that.

Jill: Tell me how, tell me how inhumane that is….

Tammy: Absolutely.

Jill: Inhumane.

Tammy: Absolutely.

Jill: As an educated woman, I consider myself an educated woman. I did not allow that to happen. This last time.

Tammy: Right.

Jill:  I stuck my heels in and said, oh no, my son needs to be treated well. “Well, we have this many people in our county that we don’t have beds for, we don’t have room for.” Wow.

Tammy: That’s shocking because it’s just and that’s something to check on I think. It just doesn’t sound like it could be legal. But we run into these things all the time that seems. like could this happen?

Jill: How could it happen?

Tammy: How could it happen?

Jill: How could it be legal? Exactly. I talked to some of the nurses from this hospital and said I don’t understand it like we have to send him back. We cannot keep him.

Tammy: Mm-hmm.

Jill: So, they gave them some a shot in the leg and said here you go.

Tammy: Yeah,

Jill: Back to your county. What? You have got to be kidding me.

Tammy: So just a lack of resources.

Jill: It’s yes. And I’m going to tell you the story.

Tammy: Yeah,

Jill: It’s very personal as well, but it’s very real in my life when my son went through the episode this Christmas where his doctor took them off his medication and we were in the full-blown manic episode. I could not get my son to get in the car and go to the hospital with me in the nearest town. Could not. He was so far gone mentally that he couldn’t. He still had his automobile, he’s still on his apartment and still had all his freedom. And I was scared for his life. Somehow, some way they found his car abandoned in the middle of the street. And he was knocking on people’s doors at 6:00 in the morning confused. So, they brought him into the police and he was put in jail.

Tammy: Instead of taken to the hospital?

Jill: Uh-hmm, My son was put in jail and charged with public intoxication. So they called me and said, ‘Ma’am we have your son’. We think he’s high on meth.

Tammy: He was manic?

Jill: Yes,

Tammy: That’s what I’m hearing.

[laughter]

Jill: A long pause because there were flames. Those emotions–

Tammy: Right.

Jill: There were flames coming out of my ears and I’m like. “Sir, please any, any drug test you’d like to give him. I’d like for you too because my son is in a full-blown manic episode.” “I just think he needs to sober up, we’ll keep him overnight.”

Tammy: Even after you told them this?

Jill: Yes, even after I told them so. I said alright. Because I honestly want to get my son out and if you’re keeping him right here I’m calling around, I’m going to start trying to find a spot. But why don’t you go ahead, and run a drug test, do whatever you need to do, have him “sober up”? I got a phone call by 8:00 am the next morning.  “Yeah, no, there’s no drugs in his system. He’s not– Yeah. I’m sorry ma’am. He needs some medical attention.” I go “he’s needs some medical attention as soon as possible. Let’s get on it.” Well, that was December 28, my son sat in jail until January 2nd. I had to file papers to get him committed. I had to go to the judge and beg and plead to get him some help.

Tammy: Because they were saying this is criminal activity as opposed to a symptom.

Jill: Thank you. Yes.

Tammy: For an illness that he clearly had?

Jill: Yes and had history. This was just six months ago. He’s had this basically three years and so, I was persistent and did not give up. And I said how, “how is this? how is this okay to keep my son locked up in a jail cell? He’s done no criminal activity.”

Tammy: Right.

Jill: They were like, “we don’t know what to do with him.” They told me, “we don’t know what to do with him. We have nowhere to take him.” That is what’s wrong with mental health.

Tammy: So, in this case, having an access center in your county, having training, CIT training, crisis intervention training among the police. These would have made a huge–

Jill: Huge

Tammy: –difference for your son and for your family. Not to mention for your community who is probably a lot of your neighbors or whoever were frightened.

Jill: Yes.

Tammy: And luckily no one was hurt, it sounds like.

Jill: No, absolutely no.

Tammy: But he could have.

Jill: Oh he could have

Tammy: Got himself into a car accident.

Jill: Yes. And hurt himself or someone else.

Tammy: And hurt himself. So those are just some little examples.

Jill: Mm-hmm.

Tammy: So this is a great example of how resources make such a difference.

Jill: They do. And I was persistant and I stayed strong and said I will do whatever it takes. The judges in my county were amazing. The police officers in my county were amazing gave me their home phone numbers and set–

Tammy: It’s wonderful.

Jill: I had probably the best support in a horrible situation I did, but I was persistent. And I do live in a smaller community, but I still think that those judges didn’t have to do that.

Tammy: Right.

Jill: But I will never ever forget the judge’s comment to me. He said, “Jill, your son does not deserve this treatment. I’m sorry, he has done nothing wrong.”

Tammy: I’m so glad you got to hear that

Jill: And I said, “thank you. You know who needs to hear that?”

Tammy:  Your son.

Jill: “It’s my son.”

Tammy: Did he tell him?

Jill:  Later after he got–

Tammy:  Well enough.

Jill: –well.

Tammy:  To hear…

Jill: He did. He said in the courtroom.

Tammy: I am glad you got ’cause some of these families never get that.

Jill: No, I couldn’t believe it. And I lost it emotionally. My stoic face left as fast as it could.  I just cried then. I was on the phone and I remember. Thank you so much. I said I know he does not but this is the problem. And he goes this this the problem, Jill, because I can’t send him home to you, I don’t think he’s safe. I said he’s not. I think he’d hurt me or his brother no. But he’d wander off.

Tammy: Right

Jill: And physically, I can’t keep– He’s bigger than me.

Tammy: Right.

Jill: You know this and I might– And he said so we’re going to keep him here but we’re going to I’m going to get an emergency order. Order him up there to see an ER doctor.

Tammy:  I’m glad you had that. Because then he got the help.

Jill: Yes.

Tammy: Now he’s doing much better.

Jill: Yes. Thank you. He had to stay on in the hospital in this psychiatric wing at the hospital for ten days. I was very worried he wasn’t going to come around. I went every day, I called every day on my lunch break from work and then I went up every day for a certain– you only get a two-hour time window. I went up every night still wasn’t coming back to me. But he knew who I was.

Tammy: Right

Jill: But we were still having some very delusional thoughts but finally they started him back on the medication that the doctor had taken him off. They, they uped it because obviously, they needed, they wanted to get it in his system faster. Then on the way home one night, his doctor that was treating him at the hospital called me and said, “Yeah I don’t think this by itself is working. Can I add a mood stabilizer?” I go, “sure.” We had tried that another time and it had worked for a while but we took him off focus he gained so much weight.

Tammy: Hmm,

Jill: Because there are so many factors medication and weight and other things that it affects.

Tammy: Right

Jill:  And within 48 hours I have my son back. I went up to visit him and he’s like, “Mom” and just tears of joy. I was so happy to have him back. So then they let him go a day or two later so. He’s healthy.

Tammy: That’s wonderful. So, you’ve actually already answered the next question–

Jill: Okay.

Tammy:  –which is what has worked. But if there’s something else you want to mention.

Jill: Yes…

Tammy: –something that you wanna say this works please keep this.

[laughter]

Jill: Yes.

Tammy: –keep making sure this happens for other people.

Jill: You know I just you know had I had really good luck with some really great people that were compassionate and understanding. And I think also most of the adults that I had interaction with were saddened too at the situation that they felt helpless because they wanted to help me but they couldn’t.

Tammy: Hmm,

Jill: So I think that was something. What else has worked well? Just be you know to be the best advocate for your child. You know our mental health system in the state of Iowa that I live in needs work but be an advocate for your child. You’re the person that knows your child more than anybody else in the world. So say to them you know this is what I’ve seen, this doesn’t work. This is what I need. This is what my child needs. And you know what. Even if your child is old enough, my son is old enough to say hey this makes this is working for me.

Tammy: Yes

Jill: Or this isn’t working for me. Don’t not say what you want to say. This is not something you can just say, “Ok, not a sore throat. Let’s try this and see if it works.” Something much bigger than that. And so yeah, I’m kind of outspoken sometimes

Tammy: That’s a good trait to have when you’re dealing with this. [laughter]

Jill: It is, and you don’t have to be. You don’t have to be outspoken and boisterous kinda like I am, but you need to at least say what you’re feeling. Advocate for what you think. Advocate for what you think your child needs.

Tammy:  Right

Jill: Don’t hold back.

Tammy: Right

Jill: Just don’t, because you don’t want anything to end or end up in a situation that you could have avoided.

Tammy: I think that’s really good advice.

Jill: You know.

Tammy: So, we like to ask these next three questions–

Jill: Yeah

Tammy: –each time. First of all, we recognize that this journey is constantly changing where we’re at. So just at this moment where do you feel? Do you feel like you’re swimming, drowning, or treading water?

Jill: I had to think about this question I have to really think about that but my first response really is were swimming right now. I know I just came off the story of what happened to six months ago.  But honest to goodness, six months later where I’m sitting on this day in the month of June, we are swimming.

Tammy: Good

Jill:  His treatment plan is working. He is following his treatment plan. He is doing what he needs to do. And as of most recently he looked me in the eye and said, “Mom I don’t ever want to feel that way again”. He was old enough maybe to understand. He doesn’t remember the whole episode and they say sometimes you don’t get full memory of it.

Tammy: Right

Jill: And maybe that’s a blessing because some of the things he was saying, that came out of his mouth. Maybe it’s not characteristic of him. Typically, when he is on a basing in level. But I’d say for the most part, we’re swimming, or moving forward he’s doing, like I said ,his treatment plan and he’s also he’s back to work. He’s back to smiling. He’s back to laughing. Me? As for me. It’s not it’s about me but–

Tammy: No, this question is about you.

Jill: [laughter] Yeah true. It is about me. Yeah, Yes. I’m swimming, I’m swimming. I feel good. I feel good. I feel good because I feel that I did everything I could. We got, in the end, it was a hard a hard thing to get even the last six months. I’m not even talking about the last three years of my life but in the last six months, I feel like boom, did it! You know we’re here and I’m able to kind of just and I don’t go to work and I worry about my phone ringing or I don’t go to work and think, oh I hope he gets up. I mean out of bed and gets going. I’m swimming because I know that’s all happening.

Tammy: Yes

Jill:  I’m saying he’s swimming because I see it

Tammy: Don’t you love boring days.

Jill:  I love boring days.

[laughter]

Jill: I love a boring day.

[laughter]

Tammy: They’re the joy of my life.

[laughter]

Jill: Yes.

[laughter]

Tammy: Days you not in panic mode –

Jill: Yes.

Tammy: – are so awesome.

[laughter]

Jill: Those are so awesome and so when they’re there, take them for every minute of that day because yeah.

Tammy: I agree.

Jill:  Because it could change next week.

Tammy: Exactly

Jill: My mantra has been when someone asks me a question like are you treading water, drowning, or swimming. I’m consciously optimistic.

Tammy: Right

Jill:  But we are swimming.

Tammy: Yeah.

Jill: Because in six months something can happen.

Tammy: That’s right.

Jill: But I try to look at it as six months. If my son wasn’t suffering or having this mental health issue there be something that would come up in his life anyway.

Tammy:  Absolutely

Jill:  I have a younger son who is recently turned 16. He has shown no signs or symptoms. But you know a bump in his road is, “Ugh,I did not want to get up to an ACT test”.

[laughter]

Tammy:  Oh, no.

[Inaudible]

Jill: Or having a bad day or his girlfriend broke up with him.

Tammy: Sure.

Jill: So he’s sad. You know, I mean where my other son who’s 19. It could be, “Oh, I haven’t taken my medicine for a week” or all of a sudden becomes depressive and won’t get out the bed. I mean there’s just aaah!

[laughter]

Tammy: But the truth is, life, in general, is unpredictable.

Jill: It is.

Tammy: One positive thing of going through this difficult experience is I think you become flexible to deal with that.

Jill: Totally. You are right.

 

Tammy: Because you have to, right.

Jill: There’s no other option.

Tammy: There is no other option

[laughter]

Jill: No other option. No other option

Tammy: So, what is your self-care routine. Or as I like to say sometimes it might even be a survival technique.

Jill: Yeah

Tammy: Like how do you take care of you.

Jill: Well I think my number 1 thing has been over the last three years my journey with my son and being his caregiver is to talk openly about it.

Tammy: Uh-hmm.

Jill:  Don’t hold it back. I think at first, I kind held a little bit back because I wasn’t sure you know who really to talk to and who wouldn’t be like– I know there are stigmas and there’s judgments and when I gave birth 19 years ago, did I think that my son would end up having a mental illness? No. But it’s what. It’s just life, you know.

Tammy: Uh-hmm.

Jill:  And so, it’s not. You shouldn’t be ashamed of it.

Tammy: That’s Right.

Jill: You shouldn’t feel like someone’s looking at you like what did you do, what kind of parent are you. It’s no. It’s an illness like, you know I have a friend who is diabetic just recently.

Tammy: Right

Jill: So, she has to treat that the rest of her life otherwise she can get really sick and die.

Tammy: Exactly.

Jill: So, I’ve tried to compare that with my son’s illness. He has to treat it and stay on top of his treatment plan. Otherwise, things can happen.

Tammy: That’s right.

Jill: It’s like an illness like– I know for a fact he’s going to live a long and fruitful life and amazing things are going to come his way. And I think he’s starting to believe that.

Tammy: Good.

Jill: And I think that I think I just– I try not to think too far advance, but I think it’s good to be open and talk about it.

Tammy: Absolutely.

Jill: I do. I think that’s important. I just also try to take time for myself. You know just me when I feel like I’m an empty vessel or I’m a last jar and I’m empty. I need to just take some time. Honestly, even if it’s for a couple of hours and just go for a walk by myself.

Tammy: Um-hmm.

Jill: I took up yoga. Just go–

Tammy: That’s great.

Jill: –and do some yoga poses. I’ve been considering meditation because I’ve heard it’s wonderful. Just you, just me being with me. And like I said earlier at this age who knew I didn’t know myself.

Tammy: Um-hmm.

Jill:   And I think self-care, with that you find out who you are.

Tammy: Yeah.

Jill: If really you say, “Wow, I think I’m an okay person.”

Tammy:  It’s like, oh she’s pretty awesome.

Jill: I might hang out with myself, If I–

[laughter]

Tammy: I think I should hang out with her. Exactly. I love that.

Jill:  Yeah,

Tammy: I love that.

 

Jill: Yeah. So

Tammy: So, here’s the last question we end on. I think any mother can give you a laughable moment.

[laughter]

Jill: Yes

Tammy:  So, what is your most laughable moment?

Jill: Oh jeez.

Tammy: What makes you smile when you look back and think oh my goodness.

[laughter]

Jill: I don’t know. And this is hard because– Ok, so laughable moment as in myself and my son’s mental illness and dealing with that . What’s the most laughable moments with that?

Tammy:  It can be. Yeah.

Jill:  Well honestly, it was as of recently. I can laugh now. I think it’s what that’s kind of the question you’re asking me.

Tammy: Sure

Jill:  What’s a moment that you can laugh at now. Well or that’s how I’m reading it.

[laughter]

Tammy:  It’s however you want to interpret the question but just something makes you sort of laugh like oh that was funny. [laughter]

Jill: It was and it was it’s so funny now but– So, when my son was committed to the hospital to get medication back and get him stable and able to function, I would go up every night and you can’t take anything in with you. You know it’s just me and my younger son couldn’t go because he wasn’t old enough and whatever. So it go in and oh my goodness, every day he’d see me, he recognizes me but he would talk about all his brothers and sisters and all these babies that I had.

[laughter]

Jill:  Just things and then the craziest part  – there was a lady that was my age. Very nice. And she would lecture me every night about my skincare because [laughter]  I’m naturally kind of dark complected anyway so, “Do you use a tanning bed. My husband is a dermatologist and she would just over and over…

[laughter]

Jill:  And then she– Jake would put lotion on my skin. And looking back on that one. Well, Ok.

[laughter]

Tammy: Right.

Jill: I have to laugh now but it was because I knew he was there and he was getting the care he needed.

Tammy: Right

Jill:  He was safe,he was clean. He was getting the medication but not all the chemicals in his brain were clearly working correctly yet. [laughter]

Tammy: Right

Jill: “So, mom remember that brother I had name Zach?” and I’m like, “Oh, okay no honey that’s probably…”  Oh, jeez he does– and he I and would just giggle and we would just–. Oh my goodness.

Tammy: Yeah

Jill:  But anyway.

Tammy: Yeah.

Jill: I don’t know. I have to laugh now.

Tammy: That’s right. Sometimes if you don’t laugh you cry.  Sometimes laughter helps a lot.

[laughter]

Jill: Thank you.

[laughter]

Jill: I would say that. At the time I would leave the hospital and I’d be like, “did that really just happen?” And I’m like, “ok, ok. Get it together.” And that’s where I said I wish- when was he going to come back to me like when? And now that he’s back. And we’re all good. I look back on that moment.[laughter] Did that all really happen? I remember him putting lotion in my hands and you know because you will and you will have the moments that are ingrained your head. Whether it’s good, whether it’s bad, ugly, beautiful. There are those moments. I have all of those and that’s one that I’m just like, oh my god that’s–

[laughter]

Jill: Because you know you have to. You have them all in.

Tammy: That’s right.

Jill:  And it’s just an emotional thing.

Tammy: I want to thank you, Jill, for sharing your story with us.

Jill: Oh, absolutely.

Tammy: It really is wonderful to have you share with us. Thank you

Jill: Good, thank you. Thank you just for letting me tell my story and my son’s story because it’s very therapeutic for me as well.

Tammy: Oh, thank you. I’m glad to hear that.

Jill: Yes, thank you.

[music]

Female Voice: You have been listening to Just Ask Mom copyrighted in 2018 by Mothers On The Frontline. Today’s podcast host was Tammy Nyden. The music is Old English written, performed, and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play or Stitcher.

[end]

 

 

Advocating for Foster Kids, Ask the Advocate Episode 5

logo: purple lotus flower with white figure inside holding arms up on black background

In this episode, we listen to  Andre Minett, a father of two, husband, and social worker. He discusses his experience advocating for foster children and his own experience as a father with a child with health condition.

Transcription

ATA 5 not edited

[background music]

Female Speaker: Welcome to “Ask The Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask The Advocate” is a Mothers On The Front Line production. Today we will hear from Andre Mina, a father of two, husband, and social worker. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health conference in Orlando Florida. During this particular recording, you can hear music and noise in the background from another event in the hotel. Please don’t let this noises distract you from Andre’s story.

Tammy Nyden: So, I’m just going to ask you to introduce yourself. Tell us a little bit of who you are and then the kind of advocacy work that you do.

Andre: Okay. My name is Andre Minett. I’ve been a social worker since about 2002. Definitely, this is what I do because this is the only thing I’m good at.

Tammy: I doubt that, but, okay.Andre: So, I’ve been working with children especially since 2002, right from Miami, D.C., now, here in Florida. I’ve been doing this work kind of a long time. It’s funny when I look at my resume, and then I’m like “man, I’m old.”

Tammy: That happens quickly. Doesn’t it?

Andre: Yes. My oldest son is about to turn four, my youngest son just turned two. I’ve been married for seven years. That’s kind of the highlight of my career, really.

Tammy: Right, right. Those are fun ages, too.

Andre: Yes. That’s where the real work begins, you know.

Tammy: Yes.

Andre: That’s where you understand everything you have already done, you know.

Tammy: That’s right.

Tammy: Tell us about your advocacy work.

Andre: So, I’ve been advocating for children for a long time. You almost don’t even look at it as advocacy, it’s just something that you’ve been doing for a long time. I’ve been working in foster care. I began my career working in foster care and so to advocate for a lot of those kids who really didn’t have parents who were able to advocate for them. I became their parent. I’ve been training foster parents on how to raise kids, even though, I was about twenty-two years old and telling a fifty-year-old woman – and men –  how to raise their kids. It’s kind of raising their kids, raising my kids, that they have custody of. The way we kind of wanted and for them to be ready. It’s kind of hard too, because, you know, you have to set a standard of how you raise your own kids. You have the ideologies and all that stuff, but, you know, when you say that to a parent, who’ve been spanking their kids for a long time, like “don’t touch my kids”, you know? Yet I do it in the most professional way as possible. But, you know, you check on them, and you do things like that. So, I’ve been advocating for foster children. At one point I had my own mentoring agency, where I took kids in a city who were underprivileged, and kind of raising them that way because the Foster Care System, you kind of had the whole zone, what you can do and how you can do it.

Tammy: Right. Can you talk a little bit about working with the foster kids? Where are the areas were they were really needed an advocate to help them out? I’m sure there’s many. Just pick a few.

Andre: I mean, even in the court systems, where those custody battles of determining parental rights for adoptions. So, a lot of the foster parents and the parents, they have to kind of navigate through that and think, “look, what is the best thing for these kids?” Because that’s really all came down to. It’s kind of, having everyone see eye-to-eye. So the court system, you didn’t have to advocate within the system of the foster care system because I was privileged to be a part of a therapeutic foster care system with a private organization, but you also have to deal with the state. That was kind of our managing entity to work.

Tammy: So, did you do therapeutic foster care yourself at any point?Andre: No.

Tammy: I misunderstood. But you work with the agency that did it?

Andre: I just worked with the agency. Right. A lot of the times, you would want to try to transition a kid from one home to the next home because that’s right for that kid. Sometimes the state would say, “okay, look, just put him in a home,” and you have to say, “look, here’s the plan, here’s the plan that we have,” because you have been attached to that kid and you kind of know what’s best for that kid, and you see that kid maybe five to six times a month, you know.

Tammy: So talk about that of it, because I think, in the work we do, we talk a lot of times about how the parent’s the expert, but here, you have kids who their parent can’t advocate for them at that moment. So, the closest thing they have to that could be, this person who’s working on the system on their behalf who knows them as opposed to someone else who they might get passed off to as they only met them. How do you navigate that when you know, like, you know a particular child, you know them?

Andre: Well, I think, the best thing to do, and somebody told me when I first started social work. I said, “what does making you–” as she was a parent, that’s one of my fellow social workers, I said, “what makes you a great parent?” I said, “does a social worker can make you a great parent?” She said, “no, being a parent makes me a great social worker.” You see some of these kids in these situations when their biological parents are, you know, I’ve had parents who were struggline on drugs but still wanted their kids.

Tammy: Right. Well, of course. At that moment they needed to help themselves so they could help their kids, right?

Andre: Right. A lot of times they don’t know that. That’s the hard part. Because you have this six, seven-year-old kid who wants to go back to their parents who probably even sexually abuse them. You have to say, “look, there’s help.” You have to really be non judgmental when it comes to advocating between the kids and their parents. I was twenty-two when I started and a lot of these parents who were about twenty-two, twenty-three when they had their first child. You know, I couldn’t imagine them, besides professional work, my personal life is a little bit different. So you could understand how some might have a personal life and think it is okay to have their kids in the home when they’re doing drugs but they’re downstairs. It was kind of difficult just kind of having the parents come to an agreement, like, “we know you understand, we know you love your child, every parents going to love your child, and there’s a way that we expect things to happen for your child.” So, navigating between that was sometimes difficult, but you know, when you kind of come with a non-judgmental spirit with some of those parents, and say “this could be anybody.” Even myself if given the wrong situation. So, you educate the parents, that takes a while. Yes, it’s a system, that could take a while, even longer, but, at the end of the day, when everyone’s their best interest is the child, and that’s it, when you can actually really say that the best interest is my child, this child, and all the kids I have – somebody asked me, “how many kids do I have,” I’d say that I have hundreds, because it’s just, it’s hard to look at somebody’s thirteen, it’s hard to look at someone who is six, even a baby. To say, “look, we’re going to do the best thing for this kid,” and I took them as my own. I honestly felt like the only way I could actually do this child justice is to actually think that this child is my own. And that’s hard, but I’m so glad that I did it when I was twenty-two years old because I could take it home to nobody. It was difficult, but, you know, it needed to be done.

Tammy: In the work that you do, have you been doing any of this work since you’ve become a father?

Andre: I… Yes.

Tammy: Then had that change the dynamic at all of how you went to work, how you felt doing your job? Did it adjust anything for you?

Andre: Being a father is a lot, it kind of put everything in perspective. Because I really thought that I really knew—

Tammy: And first of all, you were twenty-two, what twenty-two-year-old doesn’t know everything? I mean, let’s just start off with that.

Andre: Exactly, exactly. But at twenty-two, I realized that I had a lot to learn but I’ve also realized that I had a job to do. So, it was kind of navigating between that, it was like, okay, look, I would tell these fifty-year-old parents on how to raise their kids but I got to… But you know, being a father is a lot. So,my son was diagnosed with Sickle Cell.

Tammy: Oh, so you have experienced also with a child who has health needs. So that’s helpful for you to relate. Not that you want that to be the case, but—

Andre: No, but, it put in perspective some of the things you do. Then, honestly, how some of these parents really felt. When the Cancer Center calls you when your son is two-weeks-old, and you’re only thirty-three years old, and, I don’t know if my kid is going to live or die, because you don’t know anything about the disease, or anything. So, the advocacy that came from that, saying, “look, okay, I already love my kid, he’s two-weeks’ old, I’m not giving him back.” So, thinking of kind of where that comes from or what you had to do as a family. Then it kind of puts it in perspective, some of these parents and what they’re going through. When they’re hit with certain situations at such a young age or old age, or whatever it is, what I need to now do? So that kind of helped bring some of that stuff into perspective and kind of see their point of view a little bit more. Okay, look, I’m thirty-three years old when I had my son and realized he was diagnosed with sickle cell – and we were still going in circles and I’m educated, I’ve been through social work, I’ve been to all of this stuff. Imagine —

Tammy: It still makes you spin, right?

Andre: Right. Yes, and I had a world of support around me, behind me. I had my wife, I had a community, I had the church, I had my family and friends come together. It was a natural healthy type of support system. Imagine when that’s not the case. What do you do? Where do you go? So, that kind of put the advocacy level just a little bit higher. Obviously with age comes a lot of experience through experiences comes to a lot more.

Tammy: You hit on something that, I don’t think we talk about enough on this interviews, and that is, a lot of us who are actively engaged in children’s mental health advocacy for instance, are so privileged already that is allowing us to be involved in this advocacy. Some of those privileges, like right now, I’m only here able to interview you because my mom is watching my kids. Okay? So I have this built-in amazing support system of a wonderful mom who is amazing in doing all this, not everyone has that.

Andre: No, they don’t.

Tammy: And so, as you’re talking about being non-judgmental with the people that you’re helping in your work, a lot of them don’t have any support system.

Andre: No, they don’t. That’s the scary part. Honestly, because I know how I felt when I was hit with that news. We’re still working through it, but we worked through it.

Tammy: Because there’s nothing worse than knowing your kids can suffer, and being powerless. I mean, you get them the best care, but you can’t make them not suffer.

Andre: You can’t do anything. All you could do is what you can do, but you can’t do anything with them. That’s hard. Just imagine, I’m just thinking about some of the backgrounds that some of my families came from. Now, put it in perspective, some of the things that they are going through, drug-related issues. It’s so easy, honestly, to be judgmental in these situations. I certainly did my share of judging, like, “how could you do this?”, “how could you do that?”, but, when you understand a little bit about the background even though my kids are not raised in a drug-infested background, you’ll understand when you could be hit with certain things that you can’t deal with, where do you go when I have nowhere to go?

Tammy: Right, and as you know, with a lot of drug use, sometimes you self-medicating for something that’s not diagnosed or there are really difficult situations without support. Not that it’s a good choice… It’s not. But, we can make the choices that are presented to us. If we don’t have a lot of support, we don’t have as many choices presented to us and I think we need to keep that in mind.

Andre: Yes, and then the environment, too. If you’re having drug-use, who are the people are supporting you? Probably people who are giving you drugs or the people who encourage you about “this is what I did.” I had one family, when I was in Florida, her son was diabetic but he was severely obese – he was about three to four hundred pounds. His A1C level was supposed to be like 2 or 3 I guess, it was about 15.

Tammy: How old was he? Was he a young child or a teenager?

Andre: He was about thirteen, fourteen-years-old, but the mom was also overweight, severely obese. She kind of went through some of the same things, so, her message to me was, “I’m okay, my son will be okay.” How do you kind of convince that “look, we all need to change.” Trying to come in, “I work with this family for about a year or so,” it’s trying to convince this mom on “look, your son needs help. He’s under my care.” So we created a program that kind of dealt with weight loss and also healthy eating and worked with a lot of dieticians but, unfortunately, in that case, I had to call DCF because she missed maybe a couple of health appointments. I want to let that go but she missed the third one without letting me know. I gave her a warning so I said, “look, I have to look out for this kid and if he’s going to live or if he’s going to die”. You know, it couldn’t be on my conscience, I’m trying to be nice to this mom, while this kid is suffering. You also have the other mentality, like, “I’m fine, my kids are going to be fine, I could be in drug-use, I’ve live, my mom did it and I lived, and now, it’s okay.” You had to have somebody to come in and step in and say “look, this is kind of the fine point when things are not okay. Look, I know things have been going well, I hope things continue to go well but we’re going to do things a little bit different.” You kind of have to have the trust of the family. When you come in with a judgmental attitude, you’ll never get the trust of the family. But you come in and say “it’s okay, I understand or maybe I don’t understand, but, look, we’re going to try to get you help as quickly as possible as much as possible”. When your job, especially with me, when your job is to look out for kids, and you love these kids, it’s kind of hard to not do the right thing. Even though it’s going to hurt your relationship may be with the mom like it did with that other mom there. Well, we got that kid help. He went to a camp and he lost maybe over a hundred fifty pounds and his A1C level went down, but he had to be separated from his mom for a while which kind of hurt. But, being an advocate, those are some of the risks you take but, when the end of the day and your job is to take care of these kids because I was concerned whether this kid’s going to live or die. Those are some of the hard choices that people deal with as an advocate. You want to be in a family’s life but sometimes that means that you have to be taken away just to do the right thing and that hurts. It does.

Tammy: Right, absolutely. Because of course, the child’s health is the concern but the child wants to be with his family, and that has been really position to be in. How do you keep going, like, how do you knock your burned out?

Andre: One, you had to know that this is your calling. Like I said this is probably the only thing I’m good at. And believe me, I tried to run away a couple of times.

Tammy: Just they pulled you back in, right?

Andre: When you love that type… Then you have your own life separate. I think, over the years, I’ve been doing this over the years – since I’m 22 years old –  over the years, I really learned how to separate myself just a little bit. I think a healthy attachment is important to keep advocating, but, you kind of do things that allow you. Then I have my faith, I go to church, so that kind of relieves some of those issues.

Tammy: Right. So how do you take care of yourself? So, the church helps and having some kind of separation of your life and your work. Is there something that you do to just sort of… Because there has to be a lot of pressure at the end of some days. Disappointment, frustration, every case can’t work out, right? And that has to break your heart. How do you – individually like you –  keep pushing on?

Andre: Yes.

Tammy: Faith is very important and I can see that. Is there something you do that just helps you sort of blow off some steam? Re-center?

Andre: My wife is really good. I mean, having a supportive wife.

Tammy: Yes. That’s important.

Andre: Yes. That’s really important. My wife says all the time, “I couldn’t do it.” I couldn’t see my wife doing this work I do, she’d be coming home every day crying or adopting eight thousand kids.

Tammy: That’s right. You would have a big family.

Andre: Right. I think taking my time with my friends, and my wife is really good at having me go out with some of my friends and relax, away from my family too. Because we have our own routine that we go through every day. My kid is about to be four and two. But you know, having that routine just kind of breaking up just a little bit.

Tammy: That’s really important, in fact, there are just recent studies talking about men in particular that are in society men don’t always hang out with other man and it affects their health. As a woman, I know I’m not always telling the man in my life “you need to go out and have poker night” or whatever. We don’t encourage it necessarily. But it’s important—

Andre: That’s extremely important. I didn’t realize how important it was until my wife actually forced me out of the house one time to go to a basketball game.

Tammy: Good for her.

Andre: I’m from Connecticut, so the Yukon Huskies are playing. She forced me to go out. It was just kind of like  “I have to look over the kids. I have to cater to my wife just a little bit.” So ever since then, I’ve been doing at least once a month, going out to see a movie, and I think that’s extremely important.

Tammy: I think it’s important for any man, like, everybody, to be able to get out with some friends that you don’t have obligations to, like family, even your most loved ones, right?

Andre: Yes. But you know, that’s one thing I admire about women and as far while women lived the longest, they know how to take care of themselves.

Tammy: That, well, we’re trying.

Andre: I mean, for the most part, you guys know how to take… I was just making a joke to my friend here. I said, you know, my wife and her friend just went out and they went to a spa date, massages over there. “You want to go out, let’s not call a spa date, let’s just hang out at the spa all day.”

Tammy: Yes, exactly. Exactly.

Andre: I think that’s important because they had fun and she came back so refreshed but she does stuff like that.

Tammy: I think you’re right. I think it’s easy for women to go do that whereas for men we really need a different name for it so they feel more comfortable about it. But yes.

Andre: I’m comfortable with my manhood. We could go out and have a massage, sit down and talk, watch a game, or do something and that think that is extremely important for people to take care of themselves, especially men. I think we bottle up a lot of stuff.

Tammy: I think that’s true for anyone. And then, if you’re working in this field where, or again, if it’s one of your kids and they get diagnosed, you feel helpless, but you’re watching kids. You could only have so much power in this system to help them. That has to just sometimes feel frustrating and powerless, right?

Andre: Yes.

Tammy: So, just to be able to take care of yourself so you can go into the next case the next day and help that next kid.

Andre: Because I think when you’re really passionate about what you do – there’s going to be a lot of stuff that kind of gets to you, that you can’t do. Even the other day, I think yesterday, I was looking for one of my kids on Facebook that I taught a long time ago in Baltimore. He even joked that he was my favorite kid. But, there’s a lot of them. I wondered what happened to him, what’s going on with him. Because you feel helpless that you can’t control some of the path that your kids go through. That part is hard. That part is really hard, but I’m praying for them every night. I pray for all my kids every night. I’m a faith-believer and I understand that God is actually going to take care of a lot of my kids that I’ve watched over the years. When you can’t do anything, God’s going to.

Tammy: He’ll take over, yeah.

Tammy: Well, let me thank you for the good work that you’re doing on behalf of just all of us because it’s so important for us as a society, as family members, everyone  – to know that someone’s out there watching after the kids.

Andre: Yes.

Tammy: So, thank you for all the work you’re doing.

Andre: Well it’s a whole bunch of us out here doing it. I mean, we’re at this conference full of people that are advocates, so it just feels good.

Tammy: It does feel good to be around people who care about kids and they’re dedicating their lives to helping them. It really does.

Andre: Yes. Thank you so much.

Tammy: Thank you so much for sharing your story with us.

Andre: Appreciate it.

[background music]

Speaker: You have been listening to “Ask The Advocate”. Copyrighted in 2018 by Mothers On The Front Line. Today’s podcast host was Tammy Nyden. The music is written, performed, and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health, go to mothersonthefrontline.com.

[END]

 

 

The difficulty of getting the right diagnosis and juggling work and care giving, Just Ask Mom Episode 14

Lotus Flower Logo: Just Ask Mom Podcast Series Produced by Mothers on the Frontline. MothersOnTheFrontline.com

In this episode, we listen to Suzette Southfox, a Southern California parent of a 19 year-old son with depression, anxiety and Autism Spectrum Disorder. She tells us about her over ten-year journey with children’s mental health. She discusses the importance of honoring the strength of our children and others with depression who fight each day to get out of bed.

Transcription

Voice Over: Welcome to the Just Ask Mom podcast, where mother shared their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today, we will listen to Suzette Southfox, a Southern California parent who lives with her 19-year-old son who has depression, anxiety, and autism spectrum disorder. She has been on the Children’s Mental Health journey for over ten years now. This interview took place at the 2017 National Federation of Families for Children’s Mental Health conference.

Tammy: Just tell us a bit about yourself.

Suzette : Sure. My name is Suzette. I am a tired mom. I work in the Behavioral Health Field in Southern California. I’m an artist and I’m a writer and a performer. I love to communicate and chat with folks and and create art when I can. Don’t get a lot of chance to do that these days but that’s really what brings me joy.

Tammy: Oh, that’s really great. That’s awesome. What kind of art you do?

Suzette: I do a lot of reflective art. I do a lot of spoken word poetry.

Tammy: Oh, wonderful. Yeah.

Suzette: I do spoken word but I don’t have a whole lot of time to do that. I recently did something for a friend of mine who was just ordained as a Unitarian Universalist minister and I was, I was honored to be part of the ordination and I got to do this, it was fun.

Tammy: That’s exciting. That’s awesome. I want you to pretend that you’re talking to parents who are just beginning the journey. They just received the diagnosis for their child of a mental  health condition or maybe they even haven’t discovered a name for what is going on yet, they’re just trying to figure out how to help their child. What would you say to people with that experience based on what you go through?

Suzette: That’s a wonderful question and out of all the people that I would like to talk to  – and there are  many, many that I would like to speak with – the family that’s really finding themselves newly in the world of childhood mental health and behavioral health issues, I would love to talk to them and I would love to tell them that they’re not alone even though they feel like they’re alone. They’re in a very special club which is one that not a lot of people want to join, but they find themselves in.

Tammy: Right.

Suzette: One of the things that I did not get early on and my son was diagnosed around nine or ten years old with ruled out pediatric bipolar disorder and things were very difficult. It wasn’t until he was 16 when the psychiatrist said, “Was he ever tested for autism?” We said, “Are you kidding me?” So, people, weren’t asking the right questions, but once we found ourselves in the world of IEP’s and special ed programs and all of this, we never met another parent. None of the programs ever had, “Here’s information for your parent,” or you would think that the psychiatrist or the psychologist would say, “Here’s your brochure. Welcome to the world of pediatric mental illness. Here is your road map.” They don’t give you one.

Tammy: Absolutely not.

Suzette: No, they don’t and if you’re lucky enough to have someone with lived experience, you may get a road map but it’s so challenging. Finding those other parents and finding what is available is so difficult when you’re dealing with just the stress and the crisis. I was shocked to learn in my area that there was a whole guide for all of the programs and services but it was for other providers. It wasn’t for families and it took me to get into working in the field to actually discover this.

Tammy: Is that what motivated to get into the field?

Suzette: Well, that was one reason. I work with the Faith community for a really long time and what I discovered was the needs and the stress of navigating my son’s challenges. They were taking a toll on my working life. Before we got the diagnosis either I would call in sick, my wife would call in sick. We would be having to leave work. We knew that one of us would probably going to lose our job. She took an early retirement to stay at home because at that time, my son couldn’t get out of the car in the morning. He missed 125 days of school because of anxiety. As we’re going through all of this, we have support of the school but we just didn’t know other families. I think it’s so important to not only tell folks that they’re not alone but there are networks. You just have to be told where to find them.

Tammy: Absolutely.

Suzette: Yes, and that’s the biggest challenge, I think.

Tammy: I think that’s so important because I know my own experience in talking to other people sometimes the most helpful information I’ve got are from other parents, you know, that have been through it. They all checked out this program or this and without that network, without some way to start, you do feel lost so I think that’s really good advice.

Suzette: Yes. There’s a lot of despair also. At least there is and there has been with me and one of the things that I have learned is there’s a whole continuum of what you go through and it’s not linear. It’s not like, “Okay, I’ve gone through crisis and now I’m balancing and I’m moving into advocacy and when I get into advocacy, boom, I’m done.” No, it depends on the day really.

Tammy: Absolutely.

Suzette:  You can go through that continually. I think one of the things that I would want new parents and new families to know is the despair and the concern is visceral, it’s real. It’s probably not going to go away but if you learn to kind of make some space for that and make some space for dealing with it, it gets a little bit easier.

Tammy: Right.

Suzette: I think the biggest problem that I have, and this is really funny, we’re talking about self-care earlier, is when people say, “Take care of yourself.” I know that but it is so difficult to hear because it’s like, “What do you think I’m doing?”

Tammy: Right.

Suzette: I’m trying really hard.

Tammy: Exactly.

Suzette: Sometimes, just getting up in the morning is like, “Whoa, it’s a win.”

Tammy: Exactly.

Suzette: So that’s important and I know self-care is really, really the key, but I think that we need to be a little careful how we talk about that.

Tammy: Absolutely.

Suzette: Yes, it can turn people off.

Tammy: And we don’t know of access to do the same things to care for ourselves. I think that’s another part of it is what does that mean and the context you’re in at the moment, what can that mean for you, right? I think that’s really important.

Suzette: True.

Tammy: Absolutely. As you’re thinking about people who are navigating this early on and it is hard and is lonely and I like the message you have. I do think we can get to a point where we feel like it’s a new normal. We’ve accepted it. We’re functioning. We don’t feel torn apart all the time but then something new will happen and you go through it again. I think it’s good to know that. It’s good to know you will actually function at this level. You might not feel like it when you first hit with it, but I don’t think you’re even done and I think that’s important to hear too. That’s not a bad thing.

Suzette: Yes.

Tammy: But knowing it’s important because if you don’t, the first time it happens again, it feels devastating.

Suzette: Yes.

Tammy: But if you don’t know, you’re going to keep going and having good days and bad days and it’s okay.

Suzette: Right. It’s a learning and then when our loved ones are youngsters, you have the whole developmental issue going on so they’re constantly changing. One of the first, kind of, desperate requests that I made once we had a psychiatrist and medication and treatment plan and psychiatric nurse, God love her, I remember the first call that I made to her was, “I don’t know. I have one child. I was an older mom so I have one child. I don’t have experience. I can’t tell the different what’s developmentally appropriate and what is a mental health condition.” And she said, “Oh, if you could figure that out, you’d make a lot of money,” because I couldn’t. I just couldn’t figure that out. Now, knowing that there’s always that change. There’s always new things happening, suddenly and it’s not suddenly, but now I have a young adult and so we hear about transition, transitioning youth, how do you do that? I have a 19-year-old but I’m not prepared for what to do next because just getting through middle school, getting through high school took everything that I could do. I know they said it’s coming. You have to start when he’s 14. I didn’t get that until he was 17 and so it’s hard. It still gets hard but being able to back up a little bit and figure out, what are the new resources that I need? I have to find maybe a new set of parents. We’re the parents of really young kids. We had an affinity.

Tammy: Right.

Suzette: I would look at parents of teenagers, I was scared of that.

Tammy: Oh sometimes it’s terrifying, right? When your kids are little. You just want to focus on that one thing at a time, absolutely.

Suzette: Yes, and you look at parents of teenagers and young adults and it’s like, “Oh my God, how did you do that? I don’t want to go there ever,” and you’re going to get there.

Tammy: Right. Absolutely. As you’re thinking about your journey in helping your child, can you think of one particular thing that’s been really challenging, was really difficult, that just didn’t work and you wish could be different?

Suzette: This is going to sound really weird, but listening to him. What I mean by that is, sometimes, and this has been forever, he will tell me what he needs but I’m not hearing it and I’m not hearing it because, oh I don’t know, I’m focused on one thing or another. When I stopped and really listened to what he’s saying, we do better.

Tammy: Right.

Suzette: When he listens to what I’m saying, so it’s like communications piece there.

Tammy: Absolutely.

Suzette: Here’s the hardest part, I’m not very good at it. I communicate professionally but with my own family, I was like, “Wow.” I really have to take it down to basics and give myself permission to make mistakes. That’s the big one.

Tammy: That’s a good point. I think that’s true for any parent, right?

Suzette: Yes.

Tammy: Communicating especially with the teenage kids is hard. It’s challenging, I think, for all of us.

Suzette: Yes and you have to learn how to reset boundaries and you have conversations, and when and if they get a driver’s license, it’s a whole different world. It’s really exhausting.

Tammy: My stressor have just opened up when you said that because that’s what’s in the next couple of years for us, the whole driver’s licensing, yes.

Suzette: It has been an amazing journey and I’m just watching the young people that I know develop and grow, it’s just so exciting.

Tammy: In thinking about getting your child help, what’s worked well? What has been one thing that you’re just so glad things were aligned and worked out well?

Suzette: Well, we had an experience and it was a school related experience as a senior, a high school senior. His depression was so acute. He spent the last two or three months in bed and was not able to even shower or to mention anything and he failed. He wasn’t able to graduate and having that conversation with the school around that, I was empowered.  One of the vice principals basically said, “You know, you’re lazy.” I just took a breath and I said, “We need to talk,” because there’s something called lived experience and I have never used that word before but I heard it and  all of a sudden, “Oh my God, I have lived experience and I have a thing too,” so I’m coming and I have something. I was able to really put the context. We’re talking about behavioral health diagnosis. We’re talking about mental illness, brain chemistry. This is not being lazy. If you had any idea what he does to just survive, I don’t know that any of us could do that so it’s not lazy.

Tammy: Right.

Suzette: That was very, very helpful to me. Really clear in my own mind that we all need to be on the same page, so that was super helpful.

Tammy: Absolutely.

Suzette: Yes.

Tammy: So good for your son to hear that, “No, you’re not lazy and I know you’re not lazy,” I think it’s important. That’s great. We ask this of everyone because we recognize, as we were just saying, as you pointed out, this is different from moment to moment for all of us, but at this moment, are you swimming? Are you treading water? Are you drowning? Where do you feel at this moment?

Suzette: That’s really good question; all three of those, yeah, yeah.

Tammy: That’s a good answer.

Suzette: All three of those. All three at the same time and it’s so hard to manage that, but really I have kind of like a low grade. It’s not a panic but it’s a low grade like, “Help,” because it’s all really hard.

Tammy: Right.

Suzette: I feel like I have good resources and good support so I’m going along okay. I guess I’ve been doing this for so long that my new normal is not what anybody else’s normal is.

Tammy: Exactly and I think that’s what’s really important is you get to a point where this, I can function at this level, even though the average person would be falling apart and maybe we fell apart when that was first our experience. That’s why I love what you said about your child, because I think we often see someone who’s struggling to get out of bed or struggling to go to school and people will say things like they’re lazy or say that someone is anxious so they’re just scared all the time or what have you. The truth is with their condition, they are like super-power to do what they do every day. There are more courage than most people just to do what they’re doing or more strength on going, fortitude to go get something done. I think we just need to give people credit for what they’re doing and I’m in that for them. I love that you said that earlier too.

Suzette: I think it’s struggle that we constantly revisit. I don’t know if anybody else’s have this come out of their mouth, but I’ve done it on number of occasions; “What’s wrong with you?” I don’t mean to say it. Oh my God. I said it once and he turned to me, he says, “Do you really need to know? Would it be easier if I was on a wheelchair?” I thought, “Oh my God. I’ve even said this to other people and I myself am saying this now?”

Tammy: Right.

Suzette: So it’s constantly guarding and learning and checking and remembering.

Tammy: I think that’s a really good point because most of the people we’re interviewing here, they have a child with a life-long condition, right? If you have a child in a wheelchair with a life-long condition we don’t say, “Well, why is it we don’t get up today?” After ten years of being in a wheelchair, right? But we do that.

Suzette: Yes.

Tammy: We do that all the time and I know I’ve done it and actually, when my child’s teachers or family members have to say, “Why is he doing this now?” I’m like, “You know this has been a condition all this time.”

Suzette: Yes.

Tammy: I think that when we’re asking that, what we have to do is sit back and go, “What is it about this moment that I can’t handle?” Because this is our normal, this is our situation.

Suzette: Yes.

Tammy: I’ve imagined that if you do have a  child in a wheelchair for ten years, there might be some days you can’t take it, but you would recognize, “My child’s circumstance hasn’t changed. I’m just having hard time handling it today.” We need to be able to do with mental health and say, “My child’s has the same condition but today it’s really hard for me to deal with.” Did that make sense?

Suzette: Absolutely.

Tammy: I love the comparison that you make there. I think it’s important.

Suzette: Absolutely, it is. You’re absolutely right. Then to give our kids the language to know that, and when he checked me on that as he often does with words that have come out of my mouth, he responds and like and I’m learning constantly from him especially when it’s difficult. He has a sleeping disorder and he goes nocturnal. He also has separation anxiety so when I’m away from him as I am now, he gets very tense.

Tammy: Right.

Suzette: He called me at 7 o’clock this morning which was four and I just checked him 15 minutes before we started and he hasn’t slept yet. I’m very concerned about that and what the household is like and what the stress is like, but you know, it’s just a day.

Tammy: It’s just a day.

Suzette: It’s just a day.

Tammy: Yes, absolutely. What is your self-care routine or as we say with more appropriate, survival technique, because sometime that’s what it comes down to too, right? How do you take care of you when you’re in the middle of all of this because as we’re saying, it’s not always possible to do what we’d like to do so what do you do?

Suzette: You know what? My go-to place is the bathroom.

Tammy: Yes.

Suzette: Sometimes it’s not real safe if there’s pounding or screaming on the other side of the door but if I can get to a place where I can just be isolated and I usually turn the lights off and I just breathe. Just for a minute.

Tammy: Right.

Suzette: Just for a minute and then go back out and I can do that at work. I can do that at church. I can do that at lunch[?], so you can do it anywhere. That’s one thing if it’s a crisis and I just need to step back. I swim and when I’m lucky, I swim in the ocean. I do that regularly.

Tammy: Oh, I’m jealous.

Suzette: I swim with mom.

Tammy: That’s sounds wonderful.

Suzette: She’s a good swimmer. She’s been swimming for years. When I have a chance I get in the water and it’s really wonderful.

Tammy: That is wonderful. That is great. Another question I’d like to ask, because any parents has some of this, right? Kids keep us laughing. What’s your most laughable moment? What makes you laugh or smile when you think back to your experience with your child?

Suzette: Oh my gosh. My son is a professional magician and when I watch him engaged with other people, I mean it’s amazing when you see grown adults going, “What happened? How did that happen? Oh, my God.” It’s just makes me chuckle because he has such a gift to be able to do that, but he does it because he likes to bring joy to people, right?

Tammy: That’s wonderful.

Suzette: So he’s a champion. He’s a knight in shining armor and he loves to bring joy to people and that makes me smile.

Tammy: That has to be fun. You get to enjoy the magic but you also get to be proud of this amazing kid.

Suzette: Yes.

Tammy: Or adult now but always a kid, right?

Suzette: Yes, always a kid. Yes, definitely.

Tammy: That’s awesome. Thank you so much for sharing your story with us.

Suzette: You’re welcome. Thank you for asking.

Voice Over: You have been listening to Just Ask Mom. Copyrighted in 2018 by Mothers On The Frontline. Today’s podcast host is Tammy Nyden. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcast in this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe to Mothers On The Frontline on iTunes, Android, Google Play or Stitcher.

[end]

Rebuilding the “map” of a child’s brain after trauma. Just Ask Mom Series Podcast, episode 10

In this episode, Nate tells us about his journey adopting his young son from the foster system and how the trauma of his son’s early life has left a complicated matrix of diagnoses.

 

Transcription

Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Nate, an adoptive single Father of 8-year old Ricky. Nate is a military and railroad veteran and lives in Iowa.

Tammy: Tell us a bit about yourself before or after you had your son, just tell us a little bit about you?

Nate: Back in 2014 I chose to– well I guess I should go back even further—when I was 30, I told myself that if I wasn’t married with 2.5 kids by the time I was 40, it was time to do something. So I did something and when I was 40 in 2014, I got license to adopt. The end of October in 2014. And that’s when the road started. A road that I had never been down and very few people in my family ever have either. Including my cousin in Arkansas who is a Special Ed teacher. Prior to that I’ve been a locomotive engineer for 20 years. Worked all over the country. Before that I was in the military. I’m a military veteran. I was a medic in the military. I had that experience but none of that prepared me for what was to come when I entered the adoption world and the various spectrums of which you would encounter.

Tammy: Okay. So pretend you are talking to the public, or you’re just telling people who haven’t had these experiences that you’ve had, what do you want them to know?

Nate: Well, foster kids, they’re in a whole different class and you often hear, these kids are damaged, or these kids have baggage or these kids are bad kids even. The stigma that follows them and none of it is their fault. The public, in general, seems to block out the fact that these kids come from very, very bad situations, and because of that their minds have been reprogrammed in all essence to survive. And that’s where a lot of these behaviors come from, and that’s what, us, as parents struggle to reprogram. If you can imagine a Rand McNally map of Missouri when a child is born. You have all of those highways going everywhere, well that’s a child’s brain when they’re born. Once you place trauma, physical abuse, sexual abuse and every other avenue on top of that, you might as well take all of those highways on that Missouri map and throw them away and you could just draw four lines that do not intersect each other, that end in nowhere and those four lines are survival, food, shelter, safety and getting their way – what they think is best for them. Those four little highways, that is it in the entire state that end nowhere, that don’t talk to each other, and it’s up to us as the public, not just the adoptive parents or foster parents, it’s up to us as the public to build all those little highways back together again.

Tammy: That’s right.

Nate: To attempt to rebuild that entire map. Now, it’s a little bit easier when you get them when they’re pretty young, not much, but a little. But it falls back, it just takes a lot, a lot, a lot, of resources to do so.

Tammy: Right. Tell us about your situation. How did you come about meeting your son and having your son and what was it like in the beginning?

Nate: It was actually very interesting. The end of 2014 and through most of 2015 I had set my home study out on various kids all over the country, literally, that I was interested in but I never really, never got considered for them.  Even once they had told me that they even had no other home studies being considered. But just as I was kind of losing hope thinking I had wasted my time getting licensed, I got a phone call. It was almost to the day – the anniversary of when my brother died in 1999. I think it was November 27th of 2015 my brother had taken his life, the end of ’99.

Tammy: I’m so sorry.

Nate: I want to say the 26th and his name was Rick, well I got a call about this six-year old that was named Ricky.

Tammy: Oh wow.

Nate: My initial intent was to adopt older like 11-12 what I tend to call the forgotten bunch -the older ones. To give them a chance number one. Number two, my work schedule is not the greatest and I kind of needed a child that was a little more self-sufficient. But they called me about Ricky, of course, the coincidence, that I could not ignore. He was a lot younger than what I had planned on but then the first things that start popping in my head is well he sure is young enough to still be able to create that bond. And whatever he has wrong should be able to turn that around or get it stabilized. So I went ahead and started visits December of 2015 and the visits I had with him, he seemed a little hyper, a lot of energy, but to me nothing out of the ordinary. Even when the visits progressed to him coming to my house to stay overnight, he wasn’t too bad. Manageable, he was manageable. Well, the end of January, they moved him in. Something had happened in the foster home and they needed to move him quickly so they went ahead and expedited the transition into my home. So I moved him in I think it was January 27th or 28th. And it was really neat because you could tell he was just happy as a lark to move in. He had never been in such a fancy house. He never had all these toys before. He was just the happiest kiddo West of the Mississippi. Then day two came.

Tammy: That quick?

Nate: That quick.

Tammy: Wow.

Nate: As soon as I went down to wake him up the morning of day two, I’m here to tell you, I just barely touched him on the shoulder and he just kind of cracked one eye open, he just slid down the bunk bed ladder down to the floor and he just took off running, I mean he’s running into walls and everything else. He’s still half asleep and he just zooms, right on up the stairs.

Tammy: Wow.

Nate: It was the craziest thing you’ve ever seen, you know what I mean? And he just– he was full board the rest of the day and I’m like, wow. I mean I’ve been around ADHD kids before but nothing to this degree. But at that time that’s all I was dealing with, I was dealing with hyper. An of course at the time he was on stimulants, he’d take his stimulant in the morning and he would kind of level out but then the rise to fame would start about one or two in the afternoon. Everyday. So he started school almost immediately and he did good at school for the first month. Then I started getting calls that they’re having problems. He would run out of the classroom and go running around the halls, or he would start throwing animals around the classroom or tearing up books or tearing up other kids’ papers. Not following directions, so on and so forth. There wasn’t any confinement at that time. But his outbursts — and at that time he was not in Special Ed either. So we dealt with it and over the– and right about then I started getting him into the local psychiatrist to figure things out. What’s going on with his meds or what are we missing or what do we need to do next. So they changed his meds to something different and well that was a mistake.

Tammy: Really?

Nate: They didn’t wean him off, they just switched from one stimulant to another. At that time, I was completely ignorant to that.

Tammy: Right, so you’re just trusting really what they tell you–

Nate: Yes.

Tammy: –because they’re the experts, right?

Nate: Yes.

Tammy: I’ve been there.

Nate: Oh.

Tammy: Yeah.

Nate: And so he– after that for the next couple of months, I mean it was just problem after problem after problem in school. They were making adjustments wherever they could and I have to hand it to that school. They tried, tried and tried again. They genuinely adored him and understood what he has to be going through. At the same time, there were no secrets between me and the school on day one, they got everything that I had. Child studies background, everything. So they knew absolutely everything and they couldn’t come back on me on top of it, you know what I mean?

Tammy: Right, you were in it together, really.

Nate: Yes, yes, we were working together. And I was raised that way with school districts because my mom is a retired teacher. So I have a compassion for the teaching industry. I understand how it works. I had a lot of problems over the next couple of months and he didn’t really have many confinements. There was a couple – two or three instances where they had to use confinement, but me or the nanny was home and one of us would go get him right away. He wouldn’t stay there. But that it was only two or three times I want to say total in that first year. Now. In May, I had got him up here to U of I and uh, they are a great facility, they do try very hard to work with the different families. They changed up his meds again and kind of went back to the original med schedule and then just hit some tweaks and added one I think– one med. And things seemed to level off the rest of May. Well enough to the point that I thought that they had gotten things figured out. Or got him on the right track. He was on a good enough track that when his worker, his social worker came to the house for her monthly check up, she asked if I would be interested in his older brother and she told me what he had and he had all the same things that my guy had.

Tammy: How much older is he?

Nate: One year.

Tammy: So they’re close.

Nate: Yes. except for the older one also had RAD.

Tammy: Radical Attachment Disorder?

Nate: Reactive.

Tammy: Oh reactive, I’m sorry Reactive Attachment Disorder. Okay.

Nate: Yes. I had done some reading about Reactive Attachment Disorder and my cousin who’s a Special Ed teacher did a paper in college on RAD so she was familiar with it too.  I figured with him doing well and what I knew and the resources that I had, I figured he’d be okay. So I took placement of his older brother middle of July and for the first few days, great. I mean, they were inseparable. As a matter of fact, they were inseparable the whole time they were in the same home together. But here’s where it went wild. About a week into it, the older brother became distant with me right away – not right away but all of a sudden. He didn’t want to hug at night anymore or he was just oddly distant. I couldn’t figure out what had happened in that weeks’ time that it turned his switch off.  I didn’t really figure it was just RAD, I just figured something I might have done or didn’t do.

Tammy: Parents do that, don’t we? We always blame ourselves.

Nate: Oh, second guesses.

Tammy: Yes, second-guessing, yeah.

Nate: So it just started to get worse from there. Where he wouldn’t take a shower or he wouldn’t do something I asked or what have you. And over the course of the next two weeks is when things really got bad because what he was doing was bringing up their shared trauma.

Tammy: Oh, I see.

Nate: He was bringing that up to Ricky and getting Ricky stirred up, causing Ricky to act out.

He would keep feeding Ricky with these traumas and these ideas of acting out and behaviors to the point that I had, at the very end– three weeks is all the placement lasted. I had went to work and my job keeps me away roughly 24 hours. Nanny is there the whole time. I get down to the other end of my territory and turn her phone on and it’s just blowing up, the nanny is just blowing up my phone, “Well they’re doing this, the older one was caught with a knife behind the shed and the dog and this and that –  and the younger one was just taking a hammer to the front steps,” and I’m like, “what is going on?” Taking paint throwing it all over the garage, it was wild. So I get home and they had done about $3,000 in damage to the house.

Tammy: Wow. Which actually takes a lot of effort for a child of those ages to do, right? I mean, well I guess not they can do damage quickly but it sounds like they were working hard at it.

Nate: These type of children, no.

Tammy: I see.

Nate: Because there is no self-control, there is no line in the sand with them.

Tammy: I see.

Nate: Everything’s game.

Tammy: And they must have been putting themselves in danger it sounds like.

Nate: Uh-huh and the nanny, she was doing everything she could to keep them–

Tammy: Safe?

Nate: –safe. But they were not listening to her whatsoever. They were threatening to run away, they were screaming obscenities at the nanny. There’s just no way. It was just an out of control situation. I don’t know what I could have done if I was there except call the sheriff. It was just a very bad scenario. The next morning, I had them go to bed after they ate when I got home that night and the next morning. Well as soon as they woke up I took them to the emergency room, I had spoken to a counselor overnight through my employer and they had suggested that that needed to happen. So I did. I went to the emergency room the next day and spent about 10 hours in the emergency room. Finally, the local officer came and picked up the older brother and took him away, removed him. And my little guy, that was the first time he got admitted up here, to the university. And so moving forward, he was in the hospital for about a week, a little over a week, came home, they tweaked a few meds. They didn’t really get to see any behaviors while he was in there, which didn’t help any. But they tweaked a med or so and they sent him home because he was being safe. And he had started school, second grade, maybe a week later. And I think it was not even a full week into the second grade and the calls started again, of physical aggression and screaming obscenities at the staff and out on the playground and dysregulation. Just you name it and I think it was the beginning of September he was suspended.

Tammy: Really?

Nate: Second grade, your being suspended.

Tammy: At this point no IEP?

Nate: No, IEP, nothing. But he was suspended for…

Tammy: Individualized education plan, we try to recognize that we need to clarify for our listeners who don’t belong to this world of alphabet soup right? Go ahead, sorry.

Nate: I guess the acronyms will throw them off. He was suspended for — he’d been standing in line, turning around. A new student, first day of school for this new student moving from somewhere else, was standing right behind Ricky. And Ricky just impulsively, just turned around and grabbed his glasses and just broke them and threw them on the floor.

Tammy: Oh, wow.

Nate: No reason, no rhyme or reason, no anything. So they suspended him and I agreed with it. It is what it is. He was at fault. So that’s where it started going downhill. I want to say it was, middle of September, that I had called an IEP to sign paperwork for suspicion of disability so he could be evaluated for special education. Now I’m here to tell you that next 60 days, might-as-well have been 6 years. It, it just seemed to take forever. The stuff that he did at school, I felt so sorry for all the other kids that were being put through that. It was traumatizing for the other kids, just like it was traumatizing to Ricky.

Tammy: Absolutely.

Nate: But this is the way they do things and it’s unfortunate. But anyway, they started the evaluation middle of September and we rolled into October. He ended up going back to the hospital. I think it was third week of October. They started to see little behaviors. They kept adding diagnoses and it was just baffling. I mean this whole time, I’m constantly on the computer researching, constantly reading studies. I’m trying to figure out this, this web that we have going on with him, trying to make sense of it because from a logical perspective it does not make sense in any way, shape, or form. Just the fact that a six-year, well, seven-year-old at this time could be so complicated. It’s just scientifically baffling to me, but he went back to the hospital in October. During October, I also got him into a geneticist and had him tested for Fragile X syndrome, which he tested negative for. I also had a CMI done, chromosomal microarray, to look for any anomalies in his chromosomal structure. That did come back abnormal, but, naturally, the partial deletion that he has, medical research has not caught up to that part of the strand yet. So they did not know the significance, if any that it would be, even though this particular chromosome that he has deletion in has a lot to do with behaviors.

Tammy: Oh, okay, so that, there’s some link at least.

Nate: Yes, I mean there’s suspicion, because this particular chromosome can depict William Syndrome. It can depict Schizophrenia. It can depict Autism. So I mean there’s a lot of behavioral controls or programming in this particular chromosome. But anyway, moving forward, he come back home from the October hospitalization. He was okay that I could tell. It depended on the day. Some days, he’s all right. But he would go only a day or two for being all right and then you would pay the price. It was November ninth, they went ahead and ended his evaluation early, a little early because they had enough.

Tammy: For the school?

Nate: Yes. They had enough data to go ahead and qualify him for special education. In the middle of November, they moved him from the school he was in to the other elementary school in town which was where their Special Ed department was.

Tammy: I see. Do you feel that helped at all?

Nate: [laughs]

Tammy: [laughs] No. Uh oh.

Nate: Oh, boy. In the very beginning, yes. But my little guy is so complicated, they couldn’t hold a candle to his needs. They distracted him, that’s what I like to call it for the first week. Then he started to show some behaviors he was showing more and more and more behaviors and needing more and more time in the Special Ed room, out of the classroom. More disruptions and so in the middle of December, he just went downhill. We never got him back. When he got to the new school from the middle of November, he started getting a lot of confinements in Special Ed almost daily for long periods. This went on until Christmas and he got out of control on Christmas and he went back to the hospital on Christmas. He was there until about January fourth, when he was released again and there again, another diagnosis and another med. But I think that it was that hospital visit I– I could tell when I picked him up he wasn’t right. He just, you could tell, he wouldn’t really last very long.

Tammy: How is he doing now?

Nate: Oh, well, he’s been in residential for five months. And they’re just starting to see progress.

Tammy: All right.

Nate: In the beginning, he was getting his money worth out of them. They were seeing all kinds of behavior. They saw behaviors as the day he was admitted. He had quite a few confinements and so forth but of course that facility is designed for those type of children that need that kind of care. We did a med wash on him. Got all the five different meds out of his system which I requested last year. Just last year but the doctors wouldn’t listen to me. Then they had him off all meds for a month and he did better. They got him off all the meds. He did level up somewhat. He wasn’t getting what they call incident reports on a daily basis. He was still right in that line of getting them but he was not taking it all away. Recently they started him on a new med, just one, trying the non-stimulant route and it’s showing promising signs.

Tammy: Well, good.

Nate: Next month we’re going to have a neuropsychological testing done to look for autism, like Asperger’s or see if there’s something else there. It’s supposed to identify which pathways are dead-end, up to his pre-frontal cortex, to see if we can get any explanations in that area or if it’s just all pure psychological, as far as his trauma and it was discovered that it appears that the piece of the puzzle that I was missing all last year, the things that were not making sense when I got him he did not have RAD. But he’d, once he got to me, and felt safe, comfortable, which didn’t take very long and the behavior that started.

Tammy: Yeah, that’s not uncommon.

Nate: That’s when the RAD surfaced because before that, he was not, he didn’t feel safe. He felt on edge. He was in survival mode in his natural instinct. But like I said, once he come to me, these symptoms started coming out. And, you know, the RAD symptoms, a lot of these, disorders that we’re dealing with in special-needs kids, whether it would be autism, ADHD, ODD, DMDD, just the acronyms are endless.

Tammy: They are.

Nate: But the symptoms they overlap each other in such messy basket weave. And to get that sorted out, it takes time.

Tammy: Another thing, I mean your son is still young. And as I talk to a lot of parents and tell my own journey, the brain’s developing and the diagnoses change and are added as they grow sometimes, it’s very complicated. You’re absolutely right.

Nate: Absolutely, it’s complicated. Yeah, and what aggravates me to this day is that we don’t, we as parents, we rely so much on the professionals. And in a way, I feel like we’re being taken advantage of because the professionals seem to just push, push meds. And not the right meds either. They want to push diagnoses that aren’t the right diagnosis. You provide them with all of this information, background on them and they don’t look at it. So we’re going into it blind asking for their help and they’re just handling another piece of cattle coming through the office. I hate to use that analogy, it is what it is. Yeah, and it’s heart-breaking to know that your child is being treated like that, you know?

Tammy: Yeah, but I mean you have this insight to that child that no one else has.

Nate: Well, absolutely, all of us are the Ph.D.’s of our child.

Tammy: Exactly, yes. I agree. It’s important to have a team that listen to the parents, listen to the other members of the team, thinking of the whole picture of that child, but it’s hard to make that happen.

Nate: It is. It’s very hard. That’s why I’ve created a term –  and it may be out there but I haven’t seen it — I call it respectfully aggressive parenting.

Tammy: I like this. Say more.

Nate: If you hear something you don’t like from someone in your network, you tell them, “Okay” and then you go to the next one. You either go to the one to the left of them or to the one on the on top of them.

Tammy: In the end, you’re fighting for that kid. That’s what you have to do.

Nate: That’s absolutely right. A lot of these people that we deal with in trying to secure services for our children they’re just doing their job. That’s the way they’re told to respond. So there’s no reason to get mad at them. There’s no reason to yell at them. There’s no reason to throw a fit. Go around.

Tammy: So, you know, there’s just so much, right? So I’m going stop you there, but I do hope we can come back to you as you progress in your journey and this is just, there’s just so much.

Nate: There is.

Tammy: So much. But at this moment right now, are you swimming, drowning, treading water? Where are you at?

Nate: Before he went to residential I was drowning. All of the community-based services in my area down there were exhausted. We weren’t getting anywhere with it. I had this seven-year-old that, for all intent and purposes, it was like gremlins in my house. I mean, swinging from the ceiling fan, you know just turning up the house and there’s nothing I could do to it, or do about it, you know. Police would have to come to my house to get him to do what I needed him to do. At that time, I was drowning. Even the local hospital didn’t know what to do with him. But at this time, I’m treading water, because it’s given me more time to do research and gather myself and understand what we really got going on with him. Working with his therapist there at the facility and her explaining some things. I mean, I’m feeling more comfortable. Now, that doesn’t make me a pro-at handling the situation yet.

Tammy: Right. It’s hard. And there’s just no way around it. This is hard.

Nate: Yes, yes, just because I’m not programmed like that. I was raised completely different, you know. It’s hard to take an eight-year-old and treat him like a two-year-old because that’s where they’re mentally at. It’s just very hard to shift gears down there. So I’m still learning, like I should be. I’m going to say I’m treading water right now, but I feel comfortable at it.

Tammy: Good. So what do you do for self-care to get through this? What helps you to get through it?

Nate:  I think a lot and I read a lot. I don’t let myself– if I started feeling myself like a little down or depressed or overwhelmed, I simply just revert back to the task at hand, the challenge at hand which is understanding how all of these disorders tie into each other. What they mean, what the outlook is so I’m constantly on the internet researching, reading studies both here the UK. The UK is doing a lot of research on ADHD. But I just keep passing scenarios thrown in, I just keep reading, keep education– keep educating myself so I can fully grasp what we have here. You know what I mean? It pushed me to go back to school. It pushed me to start a book, if nothing else just to have it documented while fresh in my mind. um, That’s what I do to keep myself maintained.

Tammy: So this is all very hard stuff. We always like to end with this question, because the only way to get through this is laughing occasionally, having some humor about it. What’s your most laughable moment that you might like to share with us?

Nate: The most laughable moment and regarding to him?

Tammy: Anything you want to share but yeah, in terms of parenting and so forth. What can you laugh at through all this?

Nate: The first time that Ricky was– he’s had several very laughable moments –but the first time he was in the ER, during that ten hours, him and his brother they were pretty unruly. And they ended up having to separate the two in two different rooms. And Ricky was being very aggressive to the point– I was standing out in the hall. There was three nurses in there. And he was working all three nurses over pretty good. So they have to call security. So I was standing in the hall and here comes this very large man, security guard, around the corner. And he kind has-his chest bumped out a little bit. He just kind of glared over at me. And he walked over to the door, to the exam room where Ricky was at. He slowly turned that doorknob, slowly opened it, side-stepped in, told the nurses that they could go. That he’s got it. Nurses filed out. He slowly closed the door very quietly. And I sat there for about a minute, and I kid you not, it sounded like Tom and Jerry going at it in that exam room for a full hour.

Tammy: Oh my gosh.

Nate: I mean it did not stop. They were just, oh, I don’t know what’s going on there but they was chasing each other hard. And then it got quiet. After that hour, it just completely got quiet.

Tammy: That’s always frightening when things get quiet.

Nate: Yes, and within a couple of minutes of it getting quiet, that door slowly opened again. He pulled it open, he side-stepped back out of it, closed the door, turned around, looked at me. His entire shirt was soaking wet with sweat. He comes up to me and he’s out of breath. And he says, “I don’t know how you do it?” I said, “Well, I’ve been doing it for almost a year, what’s your problem?” And he just shook his head and walked around the corner and I went in to check on Ricky, opened the door and there’s Ricky just sitting on the edge, of the exam table watching TV. Not a bead of sweat on it.

Tammy: Like nothing happened? Oh my gosh.

Nate: Not breathing hard, no bead of sweat. Nothing.

Tammy: Nothing .

Nate: Just like it didn’t even phase him.

Tammy: Wow.

Nate: And so he worked that man over pretty good.

Tammy: Well, I want to thank you for sharing your story. And like I said, hopefully, we can come back, talk to you again as you get further along in your journey.

Nate: Absolutely.

Tammy: Thank you so much for sharing this. We have to laugh sometimes right?

Nate: No absolutely, we got to find the humor.

Tammy: That’s right. Well, thank you so much.

Nate: No problem.

Tammy: Thank you.

Voice: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.

 

 

[end]

 

 

Asperger’s, Bullying, and Unsolicited Advice, Just Ask Mom Podcast Series, episode 9

In this episode, a mother shares her experience of the recent diagnosis of her son with Asperger’s Syndrome. She discusses the journey to the diagnosis and how well-meaning, but often misguided advice from family and friends can make this already difficult journey all the more painful. She discusses her son’s experiences being bullied in school and the pain of watching your child grow up without friends.

Transcription

Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother whose son was recently diagnosed with Aspergers.

Tammy: Tell us something about yourself.

Mother: That makes it really tough.

Tammy: I know.

Mother: Right? You think it’s all easy and then you are like…. I’m a middle age woman that is a mother of a single child. We’re on the path for a diagnosis of Asperger’s. This was a recent diagnosis, or process of a diagnosis, for us. It was a bit of a shocker. Prior to having my son, I nannied for 17 years, so I was around kids, help raise kids, manage kids. My son came along. Everything seemed fine, until now, when we really started to notice some differences and the fact that he is very routine-oriented. And just some of the changes that we’ve seen compared to the other kids. But this is tough.

Tammy: It’s tough.

Mother: Man.

Tammy: It is.

Mother: My favorite thing to do – technology. It is always something with a cell phone or the computer – a gadget of some sort. So, that is what I spend a lot of time doing, that and taking pictures.

Tammy: So that’s what you enjoy doing.

Mother: My son lives in front of the camera. Poor kid. I love him to death but.. he’s like, “Hey, you got that on my face again?”.

Tammy: It’s nice to share a passion, right?

Mother: It is.

Tammy: So that part is really good. So, you are going through this with your son. I want to know what you would like other family members to know. Who you know, because we have a lot of people out there who are going through this and they probably feel the same way. What, you are the one in the middle of it, what do you want family members who they mean very well but don’t- aren’t in the middle of it. What do you want them to know? What would you want to say to them?

Mother: So, let’s go back probably about seven months ago, when we hit a rough spot with our son, who had a day where he was so overwhelmed that he couldn’t function at all. And at that point I knew we needed to do something. We needed to figure out what was causing all the behavior and triggering this because he literally was just a body. His eyes were glassed over. He just would sit and cry. He couldn’t get dressed. The thought of going to school made him physically sick. This is a kid who up until this point loved school.

Tammy: Really?

Mother: That’s when I intervened and said, “Okay, you know, we got to do something”. After talking with family members– they were giving great suggestions, you know, trying to help —but we knew we weren’t on the right path. So we intervened with a therapist who has worked really hard with our son. With a suggestion of a friend I looked at what we felt potentially was Asperger’s and looking at our son knew that he had a lot of the same characteristics. A lot of the same things – looking back of course as a parent you feel really guilty. Because you didn’t see these things sooner but getting that groundwork work with that therapist helped me immensely sit down with my parents, with my in-laws, with my husband, with my siblings, and talk to them about what we’ve seen, what we see going forward, how we are going to try to approach things for him. Because it’s not easy. It’s very stressful. His stress is also my stress. And when he is worked up, then I can’t relax and it just throws the whole family dynamic off. Of course we got the “it’s because he is an only child? It’s because you are too hard on him. maybe if you did more with him. If you took him out and have him do more things he would be more social. That’s part of it. You are not exposing him to enough, you know? Are you sure that he’s on schedule that tight? Have you, you know, really sat back and watched?” Most definitely. The kid gets up in the morning. He has his specific clothes in mind before he gets out of bed. We lay there and talk for five minutes. He gets up. He gets dressed in a specific order. I have tried to change that up. It turns the world upside down. I’m just thinking, “Ok, so much as putting your socks on before your pants can’t be done”. But if in your mind that’s what you need, I’m fine with that. I’m okay. But until I tested that a couple of times, did I find out, right? I just thought, “Oh, it’s just him being particular about one thing”. But we have a certain routine with getting dressed. A certain way to put deodorant on. A certain way to put cologne on. We have to hit the bathroom at a certain time. We don’t do our hair, we make our hair.

Tammy: Really?

Mother: Yes, he makes his hair every morning. So, whatever style he has in his head, he makes it.

Tammy: I see.

Mother: I don’t understand where that comes from, but that’s ok. It’s not worth an argument over come at the end of the day. He eats the same food for breakfast every day until he is tired of it. He eats the same for lunch every day until he is tired of it. So, it’s very, very specific. We have to live this with him every day.

Tammy: Does he get very anxious if anything goes off his schedule?

Mother: Yes. It causes major issues. And he’ll start to fidget. Mostly he’ll either pick at his fingers or hands to try to calm himself. Compression shirts have made a huge difference for him.

Tammy: Wonderful.

Mother: Convincing him to wear them on the other hand was not easy. It took a lot of work but we’re there. It’s a safety blanket now so we don’t leave home without them.

Tammy:

Mother: I’ve invested in. I don’t know how many shirts we have in every color because for him his shirt has to match his pants. And his shirt and his socks have to match or we have an awful day. You cannot use black or blue as universal color. It is specific. It has too match. So it’s very, very tough. I never thought about this. We can do a whole series on shopping with an autistic child – it has to be a certain fabric, a certain color…

Mother: They have to fit a certain way.

Tammy: If you do it then that it’s going to help the child be well throughout the day.

Mother: Yes. It makes a huge difference. And for someone who doesn’t see this, for someone that’s not behind those closed doors on a daily basis, they can throw all kinds of great ideas out there to help you, but until they are in your shoes, they are not going to get the full picture. I would like to have more family members there to see how our days go. To give them more insight because until your hands on, you don’t get it. You see him as this spoiled child who’s throwing that temper tantrum because something, you know, to us seems so small that didn’t go right. But to them it’s significant. It’s hard for them to process it. And the lengthy talks that we have incorporated into everything that doesn’t go right to turn it into a lesson, and explain why things are going the way they are and try to help, navigate through so that they get it. It’s not easy finding the correct language to use so that you don’t frustrate them that much more. It causes a lot of stress on mom.

Tammy: Absolutely. Absolutely.

Mother: Because it’s a lot of trial and error, and with family you get stuck in the middle of that because you’re trying to do what’s best for your child. But yet, you are trying to get them to understand and you don’t want to offend anyone by not doing what they have suggested. But if you go back at them with any sort of evidence then they are upset. Even though they’re meaning well and trying to help, they are mad because you didn’t try it. And it’s just- you feel like you’re stuck in the middle of a cyclone. Because everything around you it’s just spinning so fast.

Tammy: But everyone else gets to conveniently leave the cyclone except for you and your son, right?

Mother: For sure. You’re exactly right. And it’s so crazy because when it comes down to it the more schedule oriented we are, the most smoothly things go, and the better days that he has. But if we are off task, it’s hard to get back on. I didn’t realize how hard that could be until I started reading and understanding what we are dealing with. And now it’s like a light bulb moment and to me it’s becoming second nature. When we took a trip over the weekend, to not come home is significant for him. He has his bed, a certain routine. We don’t mess with that very often. But when we do, we know it’s going to be bad. And so we talk about it for days. I have family that would say, “You’re treating him like a two-year old”. “You are talking about this way too much”. And I’ll say, “But we need to talk about it so that our trip goes better”. If I don’t, his behavior is going to be horrible. And I get the push back. “He’s 11, he knows better”. Theoretically, yes. But with what we are working on, it doesn’t click. It’s ok. We talk about it, we’ve got it all figured out. Just don’t mess with his routine and it will be ok. Once we get there, it’s fine. And he’ll have fun. But we have to work through that on a daily basis. We talk about his school schedule on the way to school every day because he has a couple of classes that change. It’s ok. If we don’t, he gets confused.

Tammy: So it’s very important for him to know what to expect. But if that’s expectation is disrupted, it’s very anxiety participating for him.

Mother: Oh, for sure, it’s definite. And it can through the entire day into depression. And come evening, after we do supper, and we shower, and we take our night time pills, and it’s time to brush the teeth and head to bed, don’t take mom out of the equation. If mom is not there to tuck him in, he will stay up until who knows when. It is horrible. I want to be home because I know if I’m not then he is not going to bed until I get there. I can even text. I can call and tell him goodnight, and he is still staying awake.

Tammy: That’s a lot of pressure because I think as a mom you expect that the first few years of life, right?

Mother: Yes. Yeah, you’re exactly right. You know, being a nanny. Not that I was there a lot for those kids –  I was on call 24 x 7, 365 because the family that I worked for had commitments that would pull them out at all hours of the day and night. I would go in early in the morning. I would be there late at night. I could put those kids to bed, right? Wasn’t a big deal. Or you can be like, “Ok, it’s 8:30 it’s time to go to bed”, and they go. Not with him. Oh no, you will be there, you will tuck me in. We talk about our day and then I’m going to sleep. Until then, it’s off the table. He will find any excuse possible to be up. And it’s so hard because then you’re confined to being home all the time or being with him all the time, in which case you never get a break.

Tammy: Right. And that backs up on us as moms?

Mother: Yeah.

Tammy: That affects our mental well being.

Mother: For sure.

Tammy: Because we need a break, right?

Mother: You need that break. You need that time away. Yeah you go to work in most cases.  Mom takes the kids to school and then she goes and that’s her eight hours or whatever of work. But you come home and there they are and they want to see you, and you want to see them. And so, that cycle continues. You don’t get that downtime, the time to process that you really need to so that you can stay healthy. Because it’s tough. The stress level. And of course, you start to adapt to it. But once you do, there’s a new challenge that comes your way. And then you are like, “Ok, how am I going to face this? How do we approach this?” You learn who you can lean on.

Tammy: Yeah, that’s true. You do know who your friends are, don’t you?

Mother: Yes, and you find out really quickly. Because you’ve got those friends that regardless of what you just find out, call you and say “Hey, how’s your day?”. You’ve got some family that do but really they are prying for information. They really don’t care – because they just want to know what the latest scoop is and what you find out, right?

Tammy: I see.

Mother: But I’ve got a really great friend who no matter what willl call and say “Hey, you know. I know you guys have supper schedule in 30 minutes, can we go for a quick walk?

Tammy: That’s wonderful. So you have a support system.

Mother: I do, but I’m learning that sometimes what’s convenient for her, it’s not convenient for me. And so, having to work on that because if I say, “Oh well, yes, supper is not for other 30 minutes”, “I’m leaving”. I’m sunk because now he’s home – which he’s fine being unattended for a day. I check in on him all the time. But I’ve walked in, I’ve talked to him. We’ve discussed few things. Maybe worked on homework. And now, I’m leaving. It does not go well. If I come home and I say, “Hey, I’m leaving in 30 minutes. Let’s get this, this and this done”. And then I’m going to go for a walk and I’ll be back. It’s ok.

Tammy: Because it’s all part of the plan.

Mother: Yes.

Tammy: So, spontaneity it’s sort of off the table.

Mother: Completely off the table. Whether it’s at any giving point, whether it’s changing– the beginning of the school year is always awful because the unknown in the schedule. The school year changing buildings was horrible. It took over a month to get squared away. And that was before the diagnosis, so we were clueless. And of course, I was extremely frustrated because I’m like, “Oh my goodness, man. It’s not that hard”. And now I’m like, “Oh, yeah it was”.

Tammy: It was that hard, yeah.

Mother: Because he’d smile, he’d go to school, he wouldn’t complain and now I’m thinking, “What was in his head? How is he getting through all this?” Because if that were me, I’d have been blown away. I would have been crawled up in a corner somewhere thinking, “I can’t do this”. And at his age, he went through it- I mean, yes, his behavior was a little rough. But all things considered, I was shocked.

Tammy: I think that’s something we don’t talk about enough is how incredible strong our kids are. They are managing and coping with so many things that other people can’t even see, including us, that are invisible to us.

Mother: Yes.

Tammy: And they are getting through it, and they are not getting kudos for that, right?

Mother: And that’s what I talked to a teacher about. You know, when we’ve talked about things- and kids in general-  when they are doing well, they need to know they are doing well. It’s not just that bad behavior. It can’t just be that because when they start to predict that they are that bad kid. And that their bad behavior  – no one wants to be around them. And nobody wants that.

Tammy: No, no.

Mother: You know, we’ve talked to our son about it– he has no friends.

Tammy: That’s one of the hardest parts, isn’t it? Just saying that, yeah, that’s very hard.

Mother: So in the meetings with the teachers, in the meeting with the family, I’m like, “Can you guys name who he hangs out with?”  They are usually like, “No, I guess we never paid attention.”  My family is like, “Well, I guess we’ve not really noticed that.”  Come birthday parties —  he doesn’t get invited. You know, come time for his birthday party, nobody shows up. Which…

Tammy: …it’s heartbreaking.

Mother: It is. And when it comes down to it, he doesn’t have that buddy that he wants have over on the weekend or someone who will hang out with and play video games or any of that. To see that and to talk to him about that is tough because he doesn’t see that other kids have this going on. In his mind, he’ll tell you he is friends with everyone because he’ll speak to everyone and everyone speaks to him. The response he gets may not be a friendly response, but in his mind, “Hey, they talk to me”.

Tammy: Does that worry you in terms of him being teased or bullied?

Mother: Yes, because it’s happened already.

Tammy: So, he thinks someone is being his friend but they are actually not treating him well?

Mother: Yes. Perfect example of that it would have been late fall. He was riding the bus. And he could tell the name of this other student that he walked to a corner with and the student went one way and he went another to come home. And it was just like casual talk about this person who were there. But then at one point I tried- I texted him, to see what was taking him so long to get home because I’ve got the alerts that it go off when he gets within so many feet of the house so that I know he’s home. So for my peace of mind I can rest a bit. You know? And he wasn’t getting home on time. And so, I texted his phone and I said, “Hey, can you tell me why you are running late?” And I got a really weird response back. Not a normal response from my child. So, I picked up the phone and I called. And someone answered it but there was no hello really quickly on the other end of the phone. And once he got on the phone I said, “What is going on?” And he’s like, Oh, well, so-and-so had my phone. And I said, “We’ll discuss this when you get home, but I’m going to keep talking to you until you walk the other way, and I know that you are home. And when I get home, we’ll talk”. When I got home that night, we talked about it. He said “when I got my phone out of my bag pack like I always do every day and I unlocked it and she reached over and took it from me.” And he is like, “Mom, I don’t understand why you are mad. She was just joking”. [I said] “No, that’s not a joking behavior”. I said, “What were you told at school?”. “Oh, yeah, we’re not supposed to touch other people’s property”. And I said, “Is your phone your property?”. “Yeah”. I said, “See? That is not acceptable behavior. What else has she done to you?” Feel free to tell me. I need to know these things so that we can take care of you. Of course she was shoving and picking on him. I said, “Can you explain to me how or why you think that she is your friend? He said, “But we talk”. “No buddy, that doesn’t make anyone your friend. A friend is going to stick up for you. A friend is going to be there when you are having a bad day to cheer you up. Shoving someone around, calling you names, taking your phone, that is not acceptable behavior”. But we are also talking about a child who got kicked in the groin in the kindergarten and has permanent damage from it.

Tammy: Oh, poor guy.

Mother: When that happened, we weren’t told.

Tammy: Really?

Mother: Not at all. We brought him home. I brought him from home school that day. Nothing was said. There was nothing in the bag pack. No phone call, no email. I went to put him in the tub that night and his whole groin area was black and blue.

Tammy: Oh, the poor guy.

Mother: So, of course, that result in mom being, “what happened to you?” And by the way, dad needs to come check you out because that’s totally awkward for mom to do it.

Tammy: Was he able to explain what happened?

Mother: He told me that another child was holding the door open when they were walking in from recess and the other child decided to kick him.

Tammy: But he didn’t think to tell anyone?

Mother: He told the teacher who said, “You’ll be ok”, and told the other student to settle down. He wasn’t sent to the office and I said, “I understand you all can’t check his groin. I get that. But a phone call so that I could have come to check him out.

Tammy: Make sure he is ok.

Mother: Or the offer of an ice pack would have been nice, but instead we find it at 8 o’clock at night when we are putting him to bed.

Mother: He went to the doctor the next day. He has a testicle that’s lodged up inside from this.

Tammy: How old was he at the time?

Mother: Six.

Tammy: Oh goodness.

Mother: To make matters worse, for three months twice a day I had to try to manually move that.

Tammy: Oh, poor kid.

Mother: How awkward for him and I both, right?

Tammy: Oh, absolutely.

Mother: When the other child- they called that child’s parents. It was, “Well, I know that sounds bad but, he’s like, what did he do to deserve it?”. That’s what was said back to us. So he’d had issues and again. He thought that kid was his friend. I was just thinking, “Buddy, you deserve so much better than this”. You’re such a good kid.

Tammy: That’s hard. So, we ask everybody at this moment, right now, do you feel like you’re swimming, draining water, drowning, what do you feel like you are at?

Mother: Treading water. We’re- we’re getting there. Two weeks ago I would say we were sinking immensely. Um, we’ve come a little bit- we’re getting a little ground. So I can ease up a bit but as summer’s coming, I’ll be drowning here soon.

Tammy: Yeah. Summer is tough.

Mother: It is. And trying to figure it all out for them.

Tammy: What do you do then? Like, what’s your self-care routine or if more relevant, what do you to survive those tough times?

Mother: I turn a lot to my camera. Whether it’s loading up my son and we go to a sporting event and I know it’s something that he will want to watch, and I’ll take pictures. And then I can go home and be on the computer and edit those. Just kind of not really completely shut everything out but be in that bubble. And just focus on the task at hand and not have to worry quite as much. It helps immensely.

Tammy: That sounds great. So, through all of this, what do you think has been your most laughable moment?

Mother: I know this sounds really bad, but watching my son talk to his therapist and get a full idea on his diagnosis, because he himself grasps it now. And he laughs at what we see and so we can laugh with him over it. Because it was so stressful to even get him to go to the therapist. And now he’s comfortable there. He knows that what we are working on it’s not a life-threatening thing. And he can joke with us about things like that now which eases family tensions so much. I know that’s a tough thing to really have us a laughable moment. But come the end of the day it’s made things so much easier for all of us that he’s taking us with this with a grain of salt. He laughs, he jokes, and he understands what’s going on. Taking him to the doctor was another good one. The poor kid had four shots.I laugh as I’m holding him.

Tammy: Right. Every mom, every dad can relate to this. No one likes their shots.

Mother: No. And we’re- we’re strategizing right? Like, “Okay, don’t look. Look at mom. Mom is across the table. Don’t watch the nurse”. You know? And he’s screaming at the top of his lungs. We’re thinking, “Come on, it’s okay. You’ve got four of them, it won’t take long”. And he watched the first shot and he’s like, “Wow, what’s the big deal here?”. He’s like, “That didn’t hurt”. We could let go. And he laid there.

Tammy: And it was nothing.

Mother: No, it was nothing. He is like, “No big deal”.

Tammy: That’s great, that’s great.

Mother: So, he provides a lot of laughable moments for us.

Tammy: Yeah. Well, that’s awesome. Well, thank you so much for sharing your story with us.

Mother: Well, thank you.

Voice: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.

 

When they see your child as “different” and turn away. Just Ask Mom Podcast Series, Episode 6

In this episode, a mother and grandmother from Iowa talk about the difficult journey of changing diagnoses, medications, and symptoms during the early childhood of their son and grandson who has Tourette’s Syndrome, OCD, and ODD. They discuss the importance of support groups, recognizing your own needs (especially when they might be different than the needs of your family members) and making sure to honor them. In their case, the need to be social and get out with other people.

 

Transcription

Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother and Grandmother from Iowa. Today they will be speaking about their elementary school-aged son and grandson who has Tourette’s Syndrome.

 

Tammy: Today we’re doing something a little bit different. We have a mother-daughter pair. I’m going to ask you both to just tell us a little bit about yourselves?

Mom: Okay, I’m an Iowa mom. I have a son who has Tourette’s, OCD and ODD –  major diagnosis there. Yes, some other ones too. He’s at grade school and we live in Iowa.

Tammy: Great.

Grandmother: And I’m the grandmother of a grandson with mental health issues and I’m here to support my daughter and my grandson.

Tammy: Great. So before we get started, I’m going ask each of you just to tell us a little bit about yourself before mothering. What were your passions? Or outside of mothering, what do you enjoy or when you fantasized about the kid’s going off and you having a moment to yourself, what would you do? [Laughs] So just what’s interesting to you as a person?

Mom: Oh boy. [Laughs] Let’s see. I used to like to sleep. [Laughs] Like I would sleep, stay up watching movies on TV and then go to bed late and stay up late and then sleep in late.

Tammy: That sounds so nice.

Mom: Yeah. [Laughing]

Grandmother: And I as the grandmother, prefer reading. Used to enjoy dancing but as the kid’s say, “Oh, yuck! Not that.”[Laughing] and gardening. I like to garden and just be current. Go on little road trips. I do fantasize having a palm tree in my front yard and a big lounge chair on each side.

Tammy: That does — especially during the winters. That’s a very attractive thought.

Grandmother: Yes. Not, not a real palm tree –  artificial – so I don’t have to worry about it dying but –that would be happy. That’s looking at happy in my eyes. Joy.

Mom: If going ‘happy’, I want the in ground pool at the backyard. [Laughs]

Tammy: [Laughing]. That sounds good too.

Grandmother: Just a fantasy.

Tammy: Awesome. Well, I want to ask you to pretend you’re talking to families who are feeling lost. They don’t have a diagnosis yet for their child but they know something’s going on. I’m wondering if you could tell us what would you say to those mothers? What would you say to family members or relatives, grandparents? As families are going through this and trying to determine what’s going on with their child?

Mom: I would just say something that helped me was to just research, research, research. Again, the internet, I googled everything. You know and then we kind of fell into a support group that helped us. There was a children’s therapy center. We didn’t actually go there for therapy because our insurance didn’t cover it. But we found out that they have a support group there on Saturday mornings. So we thought, you know, let’s just go and try this and see if we can meet other people that have kids that may have issues that can help us and stir us where to go. And so that really was our saving grace.

Grandmother: That’s true. I find — getting into this in my estimation, doctors really don’t know a whole lot. And each doctor you talk to has a different field of expertise. And they want to lead you down the path that they think you should go. Even though it may not be the right path. And so you’ll go down that path and you realized nothing is changing. So then you go back and you try and find another doctor. You start all over again and hope for the best. And that may not be, it either, it, it just is — it’s been — with the support group and talking to other parents that have saved us in. It took, it took months before we were actually able to face the fact that well, my grandson had a mental illness. We did not have it at least recognized in the family before if it was there. No one knew about. No one was directed to any special person to take care of it. So it was new to us and we were, we were just lost. We were just– Basically, we were, we were out to sea and we have no life line until we found the children’s center and then we found out that there are other people who are in that similar situation that we’re in.

Tammy: I think one of the things with children’s mental health, in particular, — what you’re saying so far is true of any kind of illness, right? Physical, mental. If you don’t, it — just finding out what it is, you’re at sea until you know what’s going on. What’s particularly difficult with children’s mental illness is their brains are developing and changing. So even if you get a diagnosis, that might change. So you can be lost, found for a little bit, lost again [laughs]. I’m just wondering if you’re can talk about?  Has that been some of your experiences as well? I mean it’s such a journey and how does having a support group help? Even once you find that support group — is that journey helped with the support group as well or…?

Mom: Well, I mean the support group has definitely helped us because there were periods where we would go through really, really deep lows with what was going in the family. Then you kind of get to a point where you can celebrate one day [laughs] One horrible month might have a good day and you need to learn to celebrate that. It just helped us going to the support group and talking with other people because they would sometimes say the same thing and we could learn that the kids’ behaviors might be based on seasonal changes –  or just significant life changes.

Grandmother: Yes. Children don’t like change in their lives. And it often happens. They can’t prevent it. And they don’t know how to deal with it when it does happen to them. We found through dealing with all of this that we have to try to change with them and help them through it. Medication was a big thing. What might work for two weeks will suddenly not work at all and then you get another medication. Pretty soon several medications and it just does not work for their little bodies.

Tammy: Yeah. There’s so much changing at once, it’s hard to know what’s doing what. I think that’s right. What do you want people to know as their trying to navigate this? So reaching out is one thing. I’m hearing.  How do you manage to have hope during that time? To sort of push your way through and take care of yourself during that time? Because it’s rough. It gets pretty dark, when you’re not sure what’s wrong with your child because we want our kids okay. We want to keep them safe.

Grandmother: And when you do find out, often times, you are, sad to say, shunned.

Tammy: Yes.

Grandmother: Because you have a child that’s different from most of the children in the neighborhood. And they look at you and say, “We know who you are but we prefer not to be with you because your child is different. Your child cannot relate to ours”. And, and in our case, we have a child who can relate better with adults than with children.  – He can start talking to any adult on their level and I have had many of them come back to me and say, “What a nice young man you have there. Very pleasurable, very knowledgeable. Very nice”. But on his pure level, he just cannot communicate with them. They don’t essentially get him. And that has been extremely difficult for him and difficult for me because I know he’s trying so hard. But they just don’t see it. And oh the pain just hurts so bad to see them making fun of him. But I don’t, I don’t know how to combat that, we just go on our merry way as best as we can.

Tammy: Yeah. It’s so painful to see your child suffer, but when it’s out of the cruelness of someone else…

Grandmother: …it’s even worse…

Tammy: …it’s worse…

Grandmother: Yes.

Tammy: I think because that can be helped, right?

Grandmother: It can.

Mom: A lot of it is just the misunderstanding. Because they don’t understand what’s going on with that other kid because the kid looks “normal”. They’re thinking, “Why is the kid doing those weird things. Why is he saying those weird things? Why is he acting like that?” Sometimes you hope that if you would just explain it to them, they would get it and they would understand more. And sometimes they don’t. And sometimes it just takes more education and they do end up understanding more and coming along and then they get a better picture of what’s going. I would still say just reaching out to other people because even in the support group we found a couple people within the group that we were able to reach out in really difficult times and just call them or text them or email them and say, “I need you to meet me for a coffee out my backyard”. [Laughs]. Because I’m barely holding on by a string. So just making that point with somebody else. To know that they’re there. And then you talk and you laugh for like 20 minutes. And then you could go back to doing what you were doing. You can go back to fighting.

Grandmother: Yes, it is important to have someone that you can maybe bond with over your problems that might have the same problem.

Tammy: Yeah, I think that’s important. So, we’ve been asking everyone this – and from my own experience, it changes from moment to moment – most people I talk to say the same thing – so at this moment, where do you find yourself? Do you feel like you’re swimming, drowning, treading water? Where do you find yourself?

[Laughing]

Grandmother: At this moment, not last night.

[Laughing]

Mom: I know. Because there’s never a dull moment. There’s always a new development. And always relates to social issues, I swear.

Grandmother: Well your 11th-year-old son likes girls now.

Mom: Oh my goodness.[Laughs]. Uhm, swimming, drowning or treading water?

Tammy: Yeah.

Mom: Treading water. Today?

Tammy: Yeah, today.

Mom: Today, okay. As of this morning, we were swimming.

Grandmother: [Laughing]

Tammy: Let’s talk about that. That’s a big deal because I, I find on my own experience – and I’m talking to a lot of moms –  it changes

Mom: By the hour.

Tammy and Mom: By the hour.

Tammy: Yeah.

Mom: It really does.

Tammy: And that itself can be very almost traumatizing because you can’t play, you can’t think ahead.

Mom: It’s interesting because I was just thinking about that on the way here because I kept thinking it takes me longer to recover from an episode than it does him.

Tammy: (in a whisper) Yeah.

Mom: And so that was part of my thing today going. I need to try and regroup and get it together and pull myself together from one of the episodes that happened last night with him and other kids because of social issues. He recovered. He went to bed last night and woke up this morning and had a good day and it was fine and everything’s good. But the grandmother and the mother are still going [made a sigh of relief] “Oh, boy.”

Tammy: Yeah. What can we do in times like that? Because that’s true, right? There’s this all-of-a-sudden “okay, everything’s fine” and we’re like, “No, it’s not”.

Grandmother: You dropped him off. You thought things were fine. Yet and then you get the phone call.

Mom: Well, we were excited because he’s trying to reach out and make new friends.  And he did make a couple of new friends and he was texting them on his phone. And so then it was one of those things where, “okay, he wants to get together with new friends”. And then you know, just in a course of like 2 minutes of him getting together with new friends, it took a really bad turn. That negative thing happened and then he was like, “I want to leave: you need to come get me”. Sometimes you think you’re doing so well and you think, “Oh good, he’s making friends. He’s reaching out and these other friends are reaching out to him” and then all-of-a-sudden you find out, in a bad moment, the kids really weren’t being friends or that other kids were involved and they were definitely bullies…

Grandmother: …taking advantage of him…

Mom: — “Oh, good we finally going down the right road”. But then you, and in just 2 minutes it subsides down and then you have to re-evaluate, weigh everything again.  Yeah. So, reaching out because I will go out with two girlfriends tonight and have dinner and drinks. “That’s how I’m going to cope.  I was going to cancel that because then my child was having some kids over and I said, “too bad”. My husband is just going take care of it because I’m going out with those girls. Because I need to go out with those girls. And then tomorrow, I’m going to go to lunch and a play with somebody that I know because if I don’t get out of the house this weekend then I’m not, I’m not going make it. Because I’m just at the end of my rope.

Tammy: This gets into the next question: what is your self-care routine, or if more appropriate survival technique?

Mom: Reaching out to other people and socializing. Because I have a husband and two boys at home that don’t meet my needs [Laughing] because they don’t communicate. They all have their own space. They’re very individual. They’re very alone. So then I am not able – being the social person that I am – to talk to them and just carry on conversations with them and to communicate. Because if they’ve done that all day in work or school, then they come home and they just want to come down and have down time. So I need to socialize. I need to get out of the house.

Grandmother: That’s good that you realized that.

Mom: I have, I have to do that. And I’ll realize after a few weeks, even if not getting out of the house, just being home every day taking care of the kids after school or after I get done working –  I just realize I’m very alone. That is when I have to say, “I need to go out and get with other people”.

Tammy: I can relate. What about you?

Grandmother: I have my weekly get-out group. We meet at least once a week and we road trip or we do lunch here or whatever. I have my friends. Sometimes I just take a book. Leave my phone behind. Don’t hear the door bell and just go sit on my porch and I’m in Lalaland by myself. Sometimes you just need to get away from it and find a group situation and I — I do have a good group.

Tammy: Good. So we always end this question. I think as you’ve all heard before, I think we’ve all said this a lot – “If we didn’t laugh, we’d be crying all the time” [laughing].

Mom: Ah-hmm. Which is the honest-to-God truth,  just us to get through.

Tammy: Yeah. And so we just like to open it up. Is there a laughable moment you’d like to share? Something that makes you laugh?

Mom: There are so many but a week ago, I put the beef roast in the crack pot and I had it all sitting on the counter and I had it all ready to go and then I turned it on and went to bed. And woke up the next morning and I checked the beef roast  – it was still uncooked. I thought, “Oh! My gosh, it must be broken. After all these years I must have burned it out”. Well, my husband’s like “Well, it would have helped if you would have plug it in”.

Tammy and Grandmother: [Laughing]

Mom: So we had to throw away 20 dollars-worth of beef roast because I hadn’t plugged the thing in all night long. See know I can’t even tell you what that thing is because I have such brain fog.

Tammy: Right. Would is actually something to talk about? We probably should have a whole show on this because it is hard to think clearly when you’re not getting enough sleep, when you’re having these emotional up and downs constantly, right? It’s hard to think straight.

Mom: Uh-hmm. Yep, it is.

Tammy: So I can relate to not plugging something in. That seems completely normal to me actually [laughing].

Mom: You’re like, “Oh! Shoot.”

Tammy: Yeah [laughing]. What about you, what’s your laughable moment to share?

Grandmother: Well I guess, this morning. My grandson and I went to brunch and we went to this restaurant. Our server was very nice. We had gone there previously during the week for his birthday. We got the same server today that we had for his birthday. And when he came over to set the table he said, “Good morning Bruno”.

Tammy: [Laughing]

Grandmother: Who was our server. And he looked up at him and he smiled and he said, “Good morning”. And he said, “What would you like?” And my grandson rattled off what he wanted and what I wanted. He ordered for us and then Bruno left and he said, “You know granny, he’s a nice server. He’s polite, he’s enthusiastic, he’s smiling.” And he said, “I can name seven things that are positive and why he should get a three dollars five cent tip”.

Tammy: [Laughing]

Grandmother: And I said, “Oh, okay,” and then he named most of them. He said, “No, he’s very good”. And then all of a sudden, Bruno came back and he left extra napkins. Which is something that when my husband goes out, we always ask for extra napkins whether anybody wants them or not.

Mom: It’s an OCD thing. (He really has OCD’s so it’s okay.)

Grandmother: So Bruno must have recognized us and he had the napkins and my grandson is sitting there, “Thanks again Bruno. I appreciated that”. And he said, “your food will be out right away”. And he said, “I bet it will”. So it did, it came quickly and so then we ate and it was very good. And so we left a five dollar tip for Bruno.

Tammy: [Laughing]. I just love how specific his calculation was.

[Laughing]

Grandmother: Yeah. He had seven reasons why Bruno should get it –  but I don’t know why he picked three dollars and five cents.

Tammy: [Laughing]. I just loved that.

Grandmother: He’s good at Math but I didn’t exactly get into it.

Tammy: [Laughing]. Well, thank you so much. I really appreciate you guys sharing your stories.

Grandmother: Okay.

Tammy: Thank you.

Grandmother: Thank you.

 

Speaker: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.

 

 

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Raising a young son with Tourette’s Syndrome, Just Ask Mom Podcast Series, episode 3

In this episode, Emily talks about her journey raising a young son with Tourette’s Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son’s school, and the larger community. By educating those in their lives about Tourette’s Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen.

Topics include: Tourette’s Syndrome, Self-Care, Family, Community, Advocating for your child at school.

Resources mentioned in this podcast:

Tourette Association of America  – (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support.

Home

The book: The Fringe Hours by Jessica Turner

Transcription

Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette’s Syndrome, living in Iowa.

Tammy: Well, I was wondering if you could just start by telling us a little about yourself?

Emily: Sure, my name is Emily and I’m a wife and a mom of two kids. I have a daughter who’s seven and I have a son who’s nine, and my nine-year-old son has Tourette’s syndrome. Tourette’s syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son’s case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we’re sort of new to all of this but he is a joy in our family and we’re just really learning how to best care and best parent him.

Tammy: Awesome. So, before we get started I’m just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you.

Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that’s just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them.

Tammy: (laughs)

Emily: I’m not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I’m a big Disney fan, it truly is my happy place. So, those are some of my passions and interests.

Tammy: Wonderful, thank you for that. I want you to pretend that you’re talking to other moms, what do you want them to know?

Emily: I would say that the thing that I would want them to know is how community is so important when you’re the parent of a child with Tourette’s syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I’d share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What’s the one thing that I do as your mom that helps you as a person living with Tourette’s Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it’s a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it’s figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too. I’ve heard too that in parenting children with special needs, there’s a high divorce rate, and so, any time [spent] on our marriage is really important to us.

Tammy: Absolutely.

Emily: Our church offers a marriage conference once a year. It’s kind of like a tune up, like you think about taking in the car. We do that or we might read a book together just to have those times when we are really building our family together, so that we can be the best parents to our kids that we can. So, our family is one. Like I mentioned, my faith is really important to me and so our church community is important. Building relationships with our pastors, in particular building relationships with our children’s pastor and the Sunday school director, the Sunday school teacher has been really important just helping them understand what Tourette’s syndrome is and how they can best help him, because as important as our faith is to us and being a parent to a child with this diagnosis, it’s important to him.

Tammy: Absolutely.

Emily: So we’re building our community. We also have a small group that we get together with and ours happens to have other parents with children with special needs. And so, it’s just a great place for us to get to share about the challenges that we have but also to celebrate with each other when we do experience joys in our parenting journey. So, that’s been a really helpful place. Building community with other moms is really important to me. I have a mom’s group of girlfriends that we get together like once a month just to go out for dinner, and again they have children with special needs, some of them, and some of them don’t, but we’re all there to just encourage and support one another in our journey as moms and that’s just been a really important routine for me. I just try to really block that out on the calendar and make that time for it.

Tammy: Can you say a little bit about that, because I think that is so important, right? I’m sure there are so many things vying for your time.

Emily: Yes.

Tammy: It would be easy for that time to be taken over.

Emily: Yes.

Tammy: So, this has been something very intentional you’re doing.

Emily: Yes. I have to keep the “why” in mind. Knowing that taking the time to be with other moms to get that encouragement and support will help me be a better mom, a better wife, a better employee; all of those things if I spend time with them. And so if I know that “why”, then it really helps me to block that out on my calendar.

Tammy: I think that’s important. Especially I think moms, we can have a tendency to be like well, “I don’t want to be selfish,” Right? So, it’s not selfish it’s for all these other people that we’re taking care of ourselves.

Emily: Yes. So, that is a really big one. Another one that has been important to me is the online community. And I was part of a local Facebook group of moms for my area and there was a post one time that another mom had put on there that she had a child with Tourette’s syndrome and I was able to message her. We ended up getting together at a park, meeting in real life. Her son was just a couple years older than mine, so I was just able to just ask her about what the challenges were, that we might experience in the future. She was able to give me some resources in our local area, medical resources, community resources that would help my child. And so, it’s just so amazing to build that online community and turn it into real life community. We also have various support organizations that are online so we have an Iowa Tourette’s support group and even though we’ve only done one thing in person with them, I just know that that’s a place that I can go if I have a question. I’m sure I can message any one of them and they would help me out. They’ve been a really big support in terms of just being there, available. Also, the Tourette’s Association of America has been incredibly resourceful. They do these webinars every month and I’ve just found as a mom, like, I can sit in my pajamas, I can watch it, and I can feel like I’m connected to people across the country, able to ask questions on their chat, or hear what other parents are asking and that’s just been a really big encouragement from the online community for me.

Tammy: That’s wonderful. Was you son able to meet other kids with Tourette’s and how was that for him?

Emily: He was. He was able to meet the son of the mom that I had met online, and that was huge for him.  I think he felt really encouraged getting to meet him. “Hey, there is someone else out there who’s like me.” There’s a huge power in that for me too.

Tammy: Yes, yes there is.

Emily: As both a mom and as a child I think. For him to hear a kid say, “I have Tourette’s too.” It was just so empowering for him to know “Hey, I can do this, you know, look at him, he’s a couple years older and he’s making it through school, and he has difficulties just like I do and we’re working on it.” And so, I think that was just really encouraging for him to meet others too. Yeah.

Tammy: Thank you. I didn’t mean to cut you off though. Did you have others?

Emily: There were others. A couple of other areas of building community that have been important. One is just at his school. Building relationships with people at school and it’s where they’re at such a big part of their day and we have been so fortunate to have a very supportive school that has been wonderful to work with. He’s had numerous teachers that have made the accommodations that he’s needed, that have listened to him, that have worked with us, that have contacted me when there’s been a difficulty, but also celebrated with me when there’s progress made in the classroom. They been great to incorporate literature in the classroom about Tourette’s syndrome, and to just allow the class to hear about it, you know, through a book; which is awesome because my son’s a big reader. And so, to have that be the medium for him was so important. I just loved how they saw that and used that for him. So just building those relationships. Also knowing who in the school, sometimes it’s not their primary teacher. But who those people are in school that are safe for him to talk to when I’m not there. I think every kid loves their kindergarten teacher. So, he loves his kindergarten teacher and just knows that she’s someone that he can go to any time of the day, and if you need support that she’s there for him. Our school secretary is amazing, our guidance counselor, we’ve really worked with her on being able to help him. Especially perfectionistic attitudes are really common with children with Tourette’s and so she has been able to help him develop strategies to handle stress during especially test taking time, is a time when there’s a lot of tics going on usually. And so, it’s been just great to build relationships with those other people in the building. To support him in his journey too. And then the last place we’ve worked on building community is just in the medical community and with counselors in the area as well. just knowing who to call because it is interesting in that you can wake up one day and it’s totally different than the day before. Sometimes you don’t know what’s going to happen and just having those resources, know what they are ahead of time, what’s available in the community has helped me feel more confident as a mom because then I know, “Okay, if this happens then I can try to contact this person” and see what the next step might be.

Tammy: Yeah. I mean on the issue of Tourette’s, because I’m more familiar with that, the medical community is so important because when you have a young developing child sometimes it’s not clear if something’s a tic or a symptom of something else.

Emily: Yes.

Tammy: And so, a lot of sniffling tics are thought to be allergies for a while, right?

Emily: Yes!

Tammy: Things like that. So, it’s complicated. So, I think that’s really important that you have this comfortable relationship with the medical team, to understand sometimes it’s just a kid getting sick, and sometimes that’s a tic. (laughs)

Emily: Sometimes it develops into a tic, and sometimes you just gotta wait and see. But it’s hard to wait and see.

Tammy: Right.

Emily: So, just knowing what those resources are in the meantime has been just incredibly encouraging to me.

Tammy: Wonderful. Thank you so much. So, you sound like you’re doing great right now.

Emily: (laughs)

Tammy: But, I want to ask you, we ask everyone this, at this moment how do you feel – do you feel like you’re swimming, drowning, treading water, where do you feel like you’re at?

Emily: So, I do feel like we are swimming at this point. Well you know, if you do think of it like a pool, I would say I feel like we have jumped into the water, we are not looking around getting our bearings anymore, we know where we are heading. But we’re heading into the deep end of the pool because with Tourette’s Syndrome, things often get worse near the tween and teen years, before they get better. And so, we are in the shallow waters. But, I would say that by building that community that we’ve got some of those flotation devices.

Tammy: (laughs) Right?

Emily: In the water. And we’re learning some of those strokes, and how to swim. And so, we know that we’re swimming right now, but we’re heading into deeper waters. But, I think that because we’ve got the support, I feel really confident about where we’re heading.

Tammy: That’s really important. Sometimes you never know for an individual, but there are these tendencies with a certain condition, and you can try to prepare, right? And be as ready as possible for those. That’s really a good point. So, what is your self-care routine? How do you take care of yourself? Now you said some of this already, but are there other things?

Emily: What I would first say is that it is really difficult, I think any mom finds it difficult to take care of themselves.

Tammy: Yes (laughs).

Emily: I think especially when you have a child with special needs it can be extra difficult to find that time to take care of yourself, but it’s maybe even more important. So, again keeping that “why” in front of you is huge. For me, one of the changes for me in thinking about self-care, because my husband works a lot of hours and so it is difficult for him to be there and to, you know, watch the kids while I go do something. So, finding ways that I can do self-care in a way that I’m not always depending on him is important  – to be able to sort of create it myself. One of the books that I read that was really important was called The Fringe Hours by Jessica Turner. She talks about how you can redeem little pockets of time throughout the day. There’s so much time that we waste throughout the day. She talks about using waiting in the lobby for a doctor’s appointment or waiting in car line at school. Those are times when we’re sometimes just sitting there twiddling our thumbs, but they can really be redeemed for self-care. I’d highly recommend that book to others. But something that I’ve done and learned from her, is to just keep notes. I love writing, it is my love language – I love to send cards to other people. So, just keeping cards in my purse to be able to write those to other people. I just love doing that. And keeping a book I like to read so being able to have a book downloaded on my phone or one in my purse has really helped me to be prepared for those times, because I think something that helps me with self-care too, is having a plan for it. Because when I don’t have a plan I’ll waste it. Just keeping those things nearby that will help me to take care of myself are really important, and then when I do get those big pockets of times, like if my husband is able to take the kids for an afternoon – he’s taking them camping this weekend – so I have a whole weekend and that’s awesome.

Tammy: Oh, that’s wonderful! (laughs)

Emily: In all those bigger pockets of time, when they’re away, just making sure that I have a plan to really accomplish some of those bigger projects that do take more focused energy. So, yeah, I am looking to working on some craft projects later today.

Tammy: That’s wonderful, and enjoy the beautiful weather too (laughs). So, we found, as I talked to other moms, a lot of us agree, the only way to get through some of this is laughing, because if you’re not laughing, you might be crying.

Emily: Yes, yes.

Tammy: Do you have a most laughable moment you’d like to share with us?

Emily: I don’t know that I have like a super laughable moment. But, I would say that, having the freedom to express humor with Tourette’s Syndrome has been huge for us. One of the most helpful things was watching one of those webinars from the Tourette’s association, with Kathy Giordano, who is on it. She talked about how one of her sons had this hair flipping tic and I think they called it the “Farrah Fawcett tic” and it was definitely something, they were definitely laughing with their son. And so, we have tried to find those moments, when we can just incorporate those little moments of humor into his diagnosis. So, for us, and this was my son’s direction totally, but he has a humming tic and he’s a big Star Wars fan. And so, he has dubbed these his R2D2 noises.

Tammy: (laughs)

Emily: And so, anytime that, you know, we hear that humming tic come back, it’s one of his primary tics that comes around a few times a year- It’s like, “Oh, R2D2’s back.” You know, we can just talk all about it and it’s a great way to just lighten the mood with those. I think it can feel really heavy at times, and so just having humor to be able to lighten things has been really helpful.

Tammy: That’s great. Well thank you so much for sharing your story with us.

Emily: Sure.

Tammy: We really appreciate it.

Emily: Glad I could.

Tammy: Thank you.

Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in March 2017 by Mothers on the Frontline. Today’s podcast host is Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.

[end]