Disruptive Mood Dysregulation Disorder and what a good day looks like. Just Ask Mom Podcast Series, episode 8

In this episode, we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD). She discusses how the condition affects the family dynamic and what a good day looks like.

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 speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD).

Tammy: So why don’t you tell us a bit about yourself?

Mother: I have 3 kids, 3 boys, ages 1 to 12. My oldest son has a mental health diagnosis. He’s right now diagnosed with the DMDD. Disruptive Mood Dysregulation Disorder. He was severely violent, had to be removed from the home for a total of about a year and 8 months, 2 different placements. Now he’s in the home, he’s non-violent for the most part but I have worked and then trained to restrain him, if need be. And I also went to school and have my Bachelor’s degree in Human Services. I switched to human services because of him.

Tammy: Very good. So, before we start, I’m going to ask you to tell us a little bit about yourself before or beyond mothering?

Mother: Well, before mothering, I was a teenager. So there wasn’t a whole lot going on. But it wasn’t until recently that I started to decide that other than mothering, I needed some hobbies. Most of my time was just spent mothering. So, I decided to help with just giving myself something to do other than the kids. I’m really into running. But I don’t like running in the cold. So then I had to figure out something to do outside of running to really get rid some of my stress so, then decide to start painting and like kind like those wine and canvasses people go to. But I don’t drink, so I find them on YouTube and I do them at home. And so, for about their hour worth of work it takes me about 3, but I do the paintings at home.

Tammy: Oh fun.

Mother: And so I really like [it]. I do painting and running.

Tammy: Very nice. So, I want to ask you to pretend you’re talking to your coworkers, right? What would you want them to know about your experiences as a mom?

Mother: Just how much time and effort it puts in, not with just my mental health son but all of my children and that trying to balance, making sure all the kids have the attention they need. I don’t think anyone realizes outside of our household really what it takes to raise a child with mental health needs. What a typical night looks like in our house, it’s not just having fun and getting through homework, it’s a very regimen routine. We have to stay very on top of our routine, we can’t just fly by the seat of our pants. Everything is very much — 3 out of 5 nights during the week we have appointments. The other nights are ball practices. Everything is laid out on calendars. We can’t go off of the routine otherwise we spend the whole night with a kid that’s having a meltdown because we went off of a routine and he didn’t expect that. It’s a very much different type of household and very much a different type of atmosphere having a household where there’s somebody that, you know, has a mentality of a 4-year-old and he’s 12.

Tammy: How do you keep that schedule because a household is not an institution, things happen — like you have to cook dinner and so on. How do you try to maintain the schedule? Can you give examples of how it’s hard to do that at times?

Mother: It is extremely hard to do. It means a lot of times where I’m one-on-one with my son and we both are left out of doing things as a family. On a lot of times, it’s just me and my oldest son. We’re together if he’s having a rough day– it’s me and him having a rough day together. It’s me and him that are together all of the time. Luckily, I am blessed with having an employer, and it’s taken me 12 years to find an employer that completely understands. I work for a school district where the principal came from a large school district and he understands mental health and he allows me to be home when my son needs me to be home because we don’t want my son not to make it through this. And so when my son can’t get out of bed and can’t make it to school, I’m allowed to stay home. But me and my son are very much left out of the rest of the family. My 16-month-old son, him and my husband and my other son go and do a lot without us if my oldest can’t go. And that’s terrible and that’s–it’s very sad, I don’t mind it so much and people, “Oh, poor you.” [but] I’ve lived my childhood, it’s not poor me, it’s too bad for my 12-year-old, it’s very heartbreaking for him. I don’t care what I miss out on, I care that my son can’t live a normal childhood. It’s heartbreaking for him. it doesn’t matter what I miss out on.  I just wish he could have a childhood and that’s where it hurts the most is to see him suffer and to see he can’t get out of bed because it’s Friday and I don’t even know most time why he can’t get out of bed and the voices in his head are mad at him that day and they’re telling him that he’s going to get hurt at school when he knows he’s not going to. That doesn’t make sense to most people.

Tammy: I think it’s hard to see any of your kids suffer in any way and this is particularly difficult, right?

Mother: Yeah. And I cut his chicken wrong, so now he has to go bed for the night, I mean, that’s…what?

Tammy: Do feel like you’re walking on eggshells sometimes?

Mother: All the time. All the time, and really you just can’t get mad at him for it because he can’t control it. You just have to let it go and be like, “Okay, well, that’s how our nights going to go.” Like, alright, cool.

Tammy: So, right now where would you say you are? Do you feel like you’re swimming, drowning, or treading water at this moment? Because for many of us, it differs from moment to moment.

Mother: It does, I feel like everything’s hour by hour. Monday, he didn’t make it to school but today’s Wednesday and so I feel he’s at school and I–so I’m treading water. Meds are doing okay, we’ve made it to everything today and I haven’t gotten a call, so I’m treading water pretty good.

Tammy: That’s a good day.

Mother: That’s a good day.

Tammy: That’s a good day.

Mother: He’s at school and I’m doing what I want to do so it’s a good day.

Tammy: That’s awesome. So, what’s your self-care routine or if more appropriate, survival technique?

Mother: Survival technique would be to know when to walk away. I’m not a single mother doing this–know when to tap out with my husband. If my son is getting– he doesn’t get physically aggressive anymore but verbally aggressive — it’s to know when I’m getting verbally aggressive back or when I feel like I’m getting upset. It’s to know when to tap out with my husband. Or even to listen to my husband when he’s like, “You need to stop and you need to walk away. You need a break.” So that’s my survival technique. Self-care is just to take time for myself. It was my 30th birthday recently and my best friend made me take the day off and we went to the mall not to shop but to do like get our nails done and to get the 5-minute massage. That sort of thing. I’s just taking time for yourself.

Tammy: That’s so important. What do you think is your most laughable moment?

Mother: I couldn’t think of a most laughable moment but it’s just finding something to laugh at. Because every day there’s something funny to laugh at and everybody gets so stressed out. It’s just always finding something funny for the day.

Tammy: Wonderful, is there anything else you’d like people to know?

Mother: I don’t think so. It’s just about reaching out to someone. Somebody’s going through something and just making sure — everybody’s having a hard time and there’s always someone having a bad day. So if someone treats you like crap, you know, just realize they’re going through something.

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

Mother: Yes, 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]

Filling up your cup, so it can run over for others, Just Ask Mom Podcast Series, episode 7

In this episode, Alissa shares her journey as a single mother raising 5 children, both biological and adopted through the foster system, and having a wide range of special needs, including physical, intellectual and emotional disabilities. She discusses how to stay centered in the tough times and how self-care is required before we are able to give to others, including our children.

 

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 are speaking with Alissa, a mother of five children, including biological children and children adopted through the foster system. She works in Human Services helping other families with mental health needs as well as other special needs.

Tammy: Well, why don’t you tell us a little bit about yourself, to get started.

Alissa: My name is Alissa Tschetter-Siedschlaw. I am a mom of five. I’ve been a single mom for ten years, although I recently got engaged.

Tammy:  Congratulations.

Alissa: Thank you.

Tammy: Oh, that’s exciting.

Alissa: My children range in age from 24 down to 9. I have both children that are biologically born to me, and children adopted through the foster system, with a wide variety of mental health, developmental, behavioral, and medical special needs. I work full time, well, actually no, I’m part time now, in human services, helping other families. I also do professional theater, by contract.

Tammy: I didn’t know that. That’s really cool.

Alissa: You didn’t? I finished a contract recently and I have a Shakespeare contract coming up in the summer.

Tammy: Oh, how fun.

Alissa: Yup. That’s what my training was originally in, theater performance.

Tammy: Well, my next question –  and you might have partially answered this –  what are you passionate about? Tell us a bit about you, outside of, or before mothering.

Alissa:  I am passionate about arts. I’m passionate about advocating for those who can’t speak for themselves. I was before this. I’m passionate about taking care of the earth, taking care of other people, treating people the way you would want to be treated yourself, trying to make a difference, and fighting against – whether it’s discrimination, or fighting against systems that don’t understand where loopholes are for people, or whatever. I’ve always been passionate about those political things and those kinds of things. I love lots of forms of art and exercise. I like to exercise. That is my medication. So yeah, those are the things.

Tammy: Great. Well, that’s awesome. So I want you to pretend that you’re talking to — In your case, you have five children, with multiple special needs, so I’d like you to pretend you’re talking to a parent with, maybe two or three kids that don’t have special needs. And try to give them some insight into what are the extra challenges.

Alissa: I think, it would be almost impossible to explain to someone else in that circumstance. What I would probably welcome them to do is come see a day in my life, or experience another family like mine. Because there’s a lot of things you don’t know until you know. A lot of very compassionate, very loving people, can say very callous things, because truly, –  it’s never crossed their mind. They’ve never thought about the kinds of problems we might have before. So sometimes, I try to explain from a place of education – without being patronizing- sometimes, just even in gaining compassion, when I have one child that I adopted, who has a tremendously tragic story. There’s not many people you could explain such a rough beginning and not pull at their heartstrings, and then, say all the things that her life is like now, and how it is to go home to a child, who’s functioning much slower than her physical size, who might have a psychotic break, and bite you, and attack you. People have a hard time even wrapping their head around those things, so I kind of wish more people could peek into our lives, because it is such a hard thing to understand. I think it’s like a lot of things that might seem unpleasant to people. We all want to pretend that certain things aren’t out there. It makes you feel like you can survive.  I know myself –  there are times when you hear some horrendous child abuse story – we all want tp  say, “No, that’s not, it can’t be. That’s not real.” Sometimes I think, our lives can look like that. I think it’s very scary to those who don’t experience that. I think it’s also why we so easily bond with each other, because so rarely do moms like us truly feel understood.

Tammy: Yeah.

Alissa: Where maybe if I am in an IEP meeting and seem snappy and bitchy or something, other moms like me would get it and go, “You know what? You’re just cutting out the BS, because you’re tired, and you’ve probably been up all night and this is your third meeting of the day, and I get you.” Where, to an outside person, it’s like “Wow this mom is difficult to deal with”. I think so much of it would be welcoming somebody in, to see a picture of what it looks like. Because I don’t think it’s something most people can wrap their head around.

Tammy: It’s interesting you say that, because even if you had a video of it, it’s still removed, because…

Alissa: …because you’re not in it, yeah.

Tammy: I don’t know the neurology of this, I just know when my child has anxiety and I’m in the same room with my child, it starts to affect my body.

Alissa: Oh, absolutely.

Tammy: So if you’re in a situation like this, day in and day out.

Alissa: Well, it absolutely does. I actually think some of the best things, you know, you maybe ask what this in a little bit –  but some of the best things I’ve done for myself, have to do with energy worth, and learning how to stay centered and calm, in the midst of chaos, rather than allowing yourself to snowball in the chaos. And realizing that chaos isn’t me, and it isn’t my own. And so, to be able to stay calm and centered in the midst of that, does reduce behavior of those around you, just naturally. It’s like tossing a pebble into a pond, and watching the ripple. If my pebble is a calm and centered and neutral pebble, it doesn’t get pulled into that. Because anxiety’s contagious.

Tammy: Absolutely.

Alissa: And it’s very, very easy for that to happen. And I would say, over the last six years, doing a lot of work, with my own therapist, with my own energy person, with a lot of alternative things like that, finding ways to do what I can do, because I can only do me when it comes down to it you know. And so, hopefully, my ripple is different. That helps reduce the amount of severity of my own reaction to the children.

Tammy: If it’s okay, I’d like to follow that up, because it’s one thing I notice, when I’m around the other moms, who go through this. I realize I’m drawn to them more than other people now. And part of it is like you say, they understand. But there’s something else, and it’s hard for me to sometimes put my finger on it. I think, in order to survive this, you have to do exactly what you said. To some extent, you have to center yourself. You have to understand that, if I’m going survive this, I have to not be carried away with it. And that’s a life skill that transfers everywhere else.

Alissa: It absolutely does. I think, in general a lot of moms like us tend to be overtly authentic. Which I love. For some people, that’s extremely off putting. Because I’ll just tell you flat out.

Tammy: [laughs] Yeah.

Alissa: You have a question you want to ask me, or somebody wants to discuss some topic. I don’t care. I’ll tell –  because, I think, when you’ve gone through these kinds of things, it is just different. I do think there is an ability to be raw and authentic, in a way that I think is a tremendous life skill, that I have gained, from a very difficult experience. Yeah.

Tammy: Right. Well, thank you for that. That is really helpful. So you have five kids. And I know just having two, how difficult it can be, making sure the sibling is getting attention, and so on. What do you wish you could tell your kids? Like, and you could pick a few, if you want, like one of the time…

Alissa: Absolutely.

Tammy: That’s five intersecting lives and so many various complicated ways…

Alissa: Well, the one thing I do know that my kids know is that I would fiercely and vigilantly fight for what they need. Unfortunately, looking back, I feel like I have been more of an advocate than I have been a mom. That part hurts my heart. I didn’t have all of the sit down and play and do fun things together, or let’s go do some fun activity, especially when I had so many with so many special needs. Our activities were physical therapy, occupational therapy, speech therapy, behavioral therapy, treatment, med management. I grieve that – that I don’t think my children will look back and remember me as a fun mom. I don’t think they’ll have those memories. But I do think my kids would tell, “If you were in a pinch, who do you want in your corner? It was my mom.” So that part I’m proud of. What I’ve had to do –  this usually does make me emotional – is let myself off the hook a bit because under the given circumstances, especially being alone for so much of it, I did the best I could, with what I had at the time. I apologize when I need to. I make the kids aware that I am a human, with faults, and I am so sorry, but I’m doing my best, and how much I love and adore you. I believe in a higher power, and God brought us together for a reason. And no matter what, even when I’m confused, and I don’t know what the reason is, or any of those things, I’m confident in that. I try to stick with that. That part can be, can be hard- I don’t think anyone has gotten the individual attention they may have needed. But I’ve tried to do simple things like take one to the grocery store. Even have one run down to the laundry just for a few minutes, here and there, I try to make sure everybody gets touched, every day. Especially when they get older, and they’re teenagers, that you get a hug goodbye and I’ll give you a kiss goodbye – that they feel physical love and affection from their mom. I think that they all know I wish I could have provided more.

Tammy:  Your story is one that, almost of us, would resonate with, because we don’t talk about it very much, but I think we all also grieve, not only the loss of the motherhood we imagined, but the childhood be imagined for our kids. All of that.

Alissa: Exactly. Well, the other really nice thing is– and I don’t know why –  I think I’ve always been a little bit of an odd duck, myself– I didn’t have expectations of what my kids would be. I didn’t. I actually think that has saved me a level of grief, that I know a lot of my peers have gone through. For the children that I adopted, there was this weird freedom from it. I don’t have guilt about their beginnings being crappy. I didn’t do it. And the neat thing about that is, I also know what they would’ve had without me and go, “You know, what? I’m doing pretty good because, you would have had worse.” It’s not that I still don’t feel like I wish I could give them more, but there is a sense of forgiving myself, when I know, okay, you know what? I know what your options were without me, so we’re doing okay. I do think I’ve grieved the mom that I wish I was. But I really want my kids to just be whoever they are. Especially with my adoptions. One of my children, they said she would basically be a vegetable. That is what I planned for. Anything above that is just bonus. So all of the issues she has today, when I look at her situation, this poor kid, I just think, this is just such a miraculous kid. I didn’t have expectations of her doing X, Y, or Z.

Tammy: That’s another thing. If we could transfer the rest of our lives, right? Just think about all of our relationships, all of our daily things, if we didn’t lead with expectations.

Alissa: I think, actually, that centered skill, being able to feel whole myself, it sets me up for much healthier relationships, because I don’t go in with expectation. If I’m here just to love you, then that’s all I’m here for. If you love me back, bonus. But I’m not here with an expectation of you offering me something in return. I view parenting much that way. It is our job to love them. It is not their job to love us back. That’s bonus. That’s gravy. That’s what we would hope for. But if they don’t, that’s not part of the journey. That’s not my job -to be your friend or to be liked by you. My job is to raise the best human being I can raise. My job is to love you unconditionally and with without expectation of being loved in return. Feeling okay with yourself, frees you that way, and helps your relationships be really authentic, really real, and you can have much deeper relationships, because you’re cutting out that expectation.

Tammy: I think that’s wonderful. So right now, at this moment, because every mom I talked to, including myself —

Alissa: A little different.

Tammy: — it varies from moment to moment.

Alissa: Right.

Tammy: But in this moment, are you treading water? Are you drowning? Are you swimming? Where do you find yourself?

Alissa: If I’m doing swimming, as the most positive of the options, I think we’re mostly swimming.

Tammy: Good.

Alissa: I think there are days we’re treading water. We aren’t sinking so much anymore, but I have had plenty of days where the goal was only to survive the day. In fact, I think, there was a decade there where I survived the decade –  my goal was only to survive the day. I still probably have poor long-term planning, because thinking too far out causes me stress and anxiety, because of that. So sometimes I have poor planning –  what are you doing in three weeks. I have no idea what I’m doing in three weeks. I’ll put it on my schedule. I’ll look the night before, because I will be overwhelmed otherwise. Over all I do feel like we’re at least always two steps forward, even though we take one step back.  If you had told me five years ago we could be this good, I would have thought you were out your mind. So that’s exciting.

Tammy: I think it’s really good for people to hear. I know the biggest hope I get is when I talk to parents whose kids are now adults and they made it and they’re okay. And it was hard, but they’re okay. It just gives you so much hope.

Alissa: I think hope is one of the most pivotal things to hang on to, because your only option isn’t to sink. There are people out there. Are the resources what I wish they were? They are not. And do I see all kinds of holes, and all kinds of systems all over the place? I sure do. But that doesn’t mean there isn’t hope. We had come a really, really long way. We had a lot of near tragedy along the way too, and we have survived. I’d like to get to a place — I don’t know if I would say we are at thriving as opposed to surviving –but we’re somewhere in the middle and that’s pretty dang good. 

Tammy: That’s really good.

Alissa: So, yeah.

Tammy: You’ve already talked a little bit about your self-care routine, but if you want to say anything more about it or in those really rough moments – the survival techniques.

Alissa: I tell lots of people to remember to breathe. Literally. I don’t think we realize how often we’re holding our breath. The difference it makes in your physical body to remind yourself to breathe. My Mommy Mantra is, “This too shall pass.”  Nothing is forever even in the worst of circumstance, this won’t always be like this. No matter what, this will change and I remind myself of that a lot. I try to exercise most days, not every day — but that does help. I also see a therapist for me. I do some energy work with an energy person when I need meds myself, I go get meds. It’s usually in the winter. I’m like you know what, I need some extra help because I’m struggling. And there’s nothing wrong with that. I think remembering that, utilizing what’s out there to be the best who you can be. We also shouldn’t think that we should be a doormat. I’ll go get my nails done. I mean, maybe not all the time, but if there’s something that is splurge, you know, I — I’m on the list too. A lot of us forget that. I don’t think you can do the quality job you want if you’re cup’s empty.

Tammy: That’s right.

Alissa: I heard someone say once –and I loved it so much–they talked about when people say, “My cup runneth over.” And what they were saying is, “You know what? What runneth over is for me to give you. What’s in the cup is for me.”

Tammy: Ah.

Alissa: And so, if you think of it that way. I have to do my best to keep my own cup full or I’ve got nothing to offer, to my children, to others, to advocacy, to change, you know, I’ve got to do my best to keep myself whole and intact as well, you know, or it does no one any good.

Tammy: Thank you. This is just amazing.

Alissa: Thank you.

Tammy: I’m going to ask you one last question. Through all this, what’s your most laughable moment?

Alissa: One of my favorite moments, so, a little bit about my daughter – she is 17. She’s intellectually disabled. She’s probably functioning around seven and she has cerebral palsy. She has schizophrenia. She had a severe – grade 3 – bilateral brain bleed. She has hydrocephalus with a shunt. She’s meth and alcohol affected. She was three months premature and her birth parents are related. So, what basket a stuff to be given. But this is one of my favorite stories about her. I home-schooled her up until third grade. And then in third grade she went to public school. She comes home and she’s telling me the story about how she and the other black girls in class were having a discussion. I realized as she went on that she thought she was black and so I said, “Madeline, did you know you’re not black”, and she said, “What?”, and she fell straight over on to the couch in shock. Then she’s like, “Well, w-what am I?”, and I said, “Well, I think you’re Italian”, and she said, “I must have gotten confused.” [laughter] It was so cute. And another really cute one I have to say about my son who’s autistic. This was just his — the way he thought it worked. At 18, he sat down to come out of the closet as straight. He figured every kid –  like each parent –  you don’t know. And then, you wait until adulthood and then apparently each child needs to sit their parents down and explain whether you are straight or gay. I just thought it was the cutest thing that one he thought that there’s no concern about what you might be, but that, he better inform me.

Tammy: Right. That’s his job.

Alissa: That he is straight.

Tammy: To tell you at this age.

Alissa: Yes. Yes. So it was cute because he came out as straight.

Tammy: That’s great. Thank you so much.

Alissa: You’re welcome.

Tammy: Such a wonderful story.

Alissa: Thank you so much, Tammy.

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]

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.

 

 

[End]

Raising her grandson after he experienced abuse, Just Ask Mom Podcast Series, episode 5

In this episode, a Grandmother tells us about raising her grandson who experienced trauma and suffered from several conditions, including ADHD, anxiety, bipolar, and learning disabilities. Please note that this story discusses child abuse and may be triggering for some of our listeners.

 

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 Grandmother who is raising a grandson with mental health and learning disorders.

Tammy: Okay. Alright. So just to begin, just tell us a little bit about yourself before or outside of mothering, just about who you are.

Grandmother: Okay. I’m a mother of two boys who are grown, and um, they seem to have a fairly happy life, one has moved back to go to school, and one of them is still living on his own. After my second marriage, my husband had a son, who was a substance abuser and he abused his young son when he was very small. And we took him, in fact we took him because his father asked us to take custody of him so he could get back at his wife for doing things he didn’t like. He didn’t really think we should take him, he just thought that this legal thing would make his wife afraid to talk to anybody. And we got the papers and our lawyer talked him into guardianship, which means you can make all decisions for the child, and when he was hit and really, and really only minorly, we said, “You don’t have to go back.” And he was very happy about that, and he recently told his psychiatrist that was the happiest day of his life. He was six at that time. We have had him now, and he just recently turned eighteen, and he’s moving into this town to live in supervised housing, because he has mental illness and he has intellectual disability. And so he needs to be supervised twenty-four seven, and they offer quite a bit of other programs, things for him to do like go to a parade, or go to the park, or—really not things that cost a lot of money, although occasionally they do, but they get passes to the fair and — what not. And so this is his first day, and he’s very happy about that.

Tammy: Wonderful, wonderful. What would you like people to know about your experience?

Grandmother: I would like them to know that often, children only show the surface of what’s going, we sensed abuse but it was only later when he told us– about a month later, he told us he had been sexually abused, about a year and a half later he told us that his baby brother who had died of SIDS was actually murdered. So he was keeping this all inside. We needed to get help for him, and I really would like mothers to know that, although it just breaks your heart to take a small child to be in residential treatment, that sometimes it’s the best thing and it’s definitely not a horrible bad thing. He was kind of like, “Bye, mom” (that’s what he called me already. They said he cried a little that night, but that’s all. And he learned so much in the various times he was in the residential treatment, and the last time he was in he got into a program that was for both mentally and intellectually problematic children. And I wish there was more because, to my knowledge, it’s one of the few places that has that, and he’s in a– was in place that only took care of eight children.

Tammy: How did that help him? Like, what was positive about it?

Grandmother: One of the best things he learned was coping skills, which as a peer support specialist, I know is one of the first things you teach people who have mental illness is how are you planning on coping with this? It might just be cuddling with a soft warm blanket, it might be setting boundaries with other people that says, “I will not pull up with that.” It might be a warm bath, it might be running or doing yoga. Everybody has their own, but you teach the children that we are all unique, and they have coping skills that they can use. And they teach parents the same thing, because when you put a child into residential care – or a lot of times they don’t get to stay as long as he did –  but when you put them in, they have a goal in that time which is often 9 months to a year of learning these coping skills, which they then come home and use, and you’ve been learning them also.

Tammy: Right. So in trying to get help for your grandson, what kind of things were either barriers you ran into, or really great successes that helped you? So it sounds like one success was a residential home for him, were there any other things that either were really helpful or didn’t go so well?

Grandmother: One of the barriers was — and many mothers and fathers and even grandparents like myself, don’t know that you cannot take a child to the emergency room and say, “You can’t believe how this kid has been behaving this last month.” That does not count. A child has to have an acute problem to be admitted to the hospital which is often the best place to go, especially if they have a children’s ward for mental illness, because that way they can have their meds adjusted, which is a difficult thing to do at home. The doctor we had took him off of everything, and then slowly added things back which could be dangerous actually. So we were told- and thank God we were told- “Don’t ever go in and say: “You won’t believe how it’s been for the last month.” You have to say, “Yesterday,” –  not even ‘yesterday’- “Today, my son woke up and he is been talking about suicide.” He was only seven actually when he first did this, and he wanted us to die too, because he wanted us to go along with him, he didn’t understand death. When we said, “No, we wouldn’t do that”, and tried to explain death to him, he said, “Well then, I’ll take my cat.” We woke up in the morning and he was quite angry and I went in the back room and he was trying to strangle his cat.

Tammy: Oh, my goodness.

Grandmother: He had been acting up in other ways too. I can’t remember right now what they were but that was a clue that he was saying, “Mom, I’m so suicidal.” So I lied, I called the doctor the next day, because we were completely snowbound and had been for several days, we live in a country and our roads weren’t cleared, there was no way I could get him to the hospital, so we just watched him all day, all night, and then I called the doctor in the morning. That night he was still agitated and he had bit into a light bulb, because he wanted a weapon to fight bad guys with. He though glass would be a good idea. That was another escalation of saying, “Mom, I am really hurting, and I’m really scared, and something has to be done.” So I called the doctor and I said, “He did this and he did that”, and I made it sound like it was simultaneous, and it just happened that moment where it has actually happened the day before. Fortunately, he was young enough not to even know the truth, and so when I’m rattling off to the interviewer at the hospital, they are like, “okay” So I think that’s important for the parents to know, if you want to get help for your child other than outpatient help and which I think it’s vital if your kid has any sort of difficulty: ADHD, Tourettes– any of those things–you need to be under their care of a psychiatrist who understands the medications they are on. But if they need to be hospitalized, you need to know how to do that.

Tammy: You’re right. That’s actually a common story that I hear, and personally have been through as well. If you don’t use exact right words, right? At the exact right time.

Grandmother: You need to know the words.

Tammy:  Thank you. That’s really an important thing to hear. So we ask people as they’re dealing with this –  we understand it changes as you’re going through this, how you are doing changes throughout it –  but at this moment do you feel like you’re swimming, treading water, drowning – where do you feel like you’re at in your journey?

Grandmother: I feel like I just got out and toweled off, because my kid is, today, in a group home, where he has twenty-four hour supervision. He is not healed, but he is able to cope with most situations. He knows what to do when he’s angry, what to do when he’s frustrated. He even tells me sometimes. Maybe my husband and I have words, he’ll say, “Mom and dad, stop that! Use your coping skills.” [laughter] and he’ll guide us. Like, one day I said to my husband, the next day, because sometimes it’s best not to fight in the midst of it, I said, “You know? What you did yesterday really bothered me and I would appreciate it if you would do such and such.” And later after we had this little talk my son (my grandson had been listening) and he said, “Good job, mom.” [laughter] He’s come a long way. We got him when he was six. He’s now eighteen. He first stint in residential care was about nine months. When he was seven. It was very hard to leave him. And maybe it’s even harder for parents as opposed to grandparents, but I knew we couldn’t handle it, I knew he couldn’t handle it. We were in a mix of financial changes in the government, so how we went about it was problematic, but we had it done. We got it done and we got him in there for nine months and he came out a somewhat better person. He went back exactly a year after he had been admitted before and we realized that that time that he was probably cyclical. Some children don’t even know what day of the week it is or what day of the year it is, but his bad time was October. When the leaves fall, when the nights get darker, he had sensory things that said, “This is when I had my bad time when I was little.” So every year –  and it’s gotten much better –  he has had a bad time, actually from October till spring.

Tammy: Is that helpful at all on predicting? I mean, as you were taking care of him through all those years did that help you anticipate those months? Did it help you prepare for that more a little bit, or?

Grandmother: It did. At least we were ready for it. But every year it was less. So we’re prepared for what it was last year and the next year it’s a little bit better. Now I just recently bought, and he has never experienced it, but I bought him, one of those all-spectrum lights, which is supposed to be good for depression –that’s one of the things he suffers from. He has bipolar disorder. He experiences anxiety to a high extent sometimes, and he has just like regular depression as opposed to bipolar, and, a bunch of other [conditions]: attention deficit which is difficult, and he has difficulty learning. But every year gets better, and every year he tries harder, and so we’re looking for the worst and, bam! He’s a little worse, a little crabby, can’t sleep quite as well at night, but it’s no big deal.

Tammy: That’s great. So that’s really encouraging to hear that it can gradually get better each year.

Grandmother: Yeah, it did with him. And I think he will probably have this his whole life, bipolar is hardly ever something that goes away. But you learn what type of bipolar disorder they have and how they react as kids mature, I’ve heard of mothers especially say little girls have more of a problem, because of hormones and self-worth. Our boy got worse in early puberty, but he is such a gentleman now, it’s just—it’s wonderful.

Tammy: We like– we, parents of younger kids, really like to hear these stories. [laughter] I have to tell you. So what is your self-care routine, how do you take care of you when all this stuff that’s going on?

Grandmother: I will have to say I’m bad about that. But one of the things I remember because I also have, experienced depression and anxiety. I went to a psychiatrist and got medication. Mine is the type that I may not have to take it all my life except for one of the antidepressants helps with the pain I have it, from Fibromyalgia, which I think that many autoimmune diseases happen to mothers and grandmothers who are highly stressed. So every once-in-a-while I will make my needs known and say, “Do not wake me up in the morning.” My husband is an early riser, he likes to get up as soon as the sun is up, and sometimes he listens to me and leave me alone. [laughter] Another thing I try to do is do what I enjoy. I belong to a group that does art. I’ve never had an art class in my life. They didn’t have art when I was in school. I went to a parochial school and I won one prize in art and that’s because I picked up the wrong crayon and drew the sky dark blue. So they figured that I must have some inner angst of some sort. [laughter] But I just piddle with it. I love what I call fiber arts because it’s fun to call it an art, whereas it’s just working with thread. I like to knit. crochet, do a little quilting, and every once-in-a-while I’ll see some real arty stuff done with a little bit of yarn and a little bit of something else, and I’ve never done a piece, but I think it’d be fun.

Tammy: Yeah. That be a nice now that you have much more time on your hands, right? [laughter]

Grandmother: Yes, yes.

Tammy:  Wonderful. And, you know, the only way we get through some of this is just by laughing sometimes. What’s your most laughable moment?

Grandmother: My most laughable moments have been with my child, with my grandchild. He’s a funny kid. This one didn’t happen when I was there, but when he had his going away party there were loads of people there, even people who had already quit and gone on to grow in other areas. They said that he had been invited over to another cottage one day, because periodically they give kids a rest from their caregivers and they give their caregivers a rest from the kid, and he had a particular cottage where he liked a lot of the kids and he liked the caregiver. He went over there (and he was no longer doing it but he was aware that kids do) they kick holes in the walls. They do all kinds of stuff that—actually he never did it at home, he did horrible things at home but he never dared to kick a hole – but when he was first there, he probably did it once a week. He went over to this cottage and there was one hole on the wall, and I had hoped that maybe he’d learn a little bit of maintenance and stuff while he watched the people constantly repairing things. [laughter] So he said, “Don’t worry, I’ll fix it.” And he got some card board, and he got some crayons and he taped it all together and he wrote on the thing, “Secret tunnel.”

[laughter]

Tammy: That’s the best one I’ve heard yet. [laughter]

Grandmother: And it’s things like that make me laugh, because he’s so funny. Sometimes even his mental illness is funny, and he’ll say, “Don’t make fun of me, mom.” And I’ll say, “I’m not making fun of you, I’m laughing with you because you are a delightful child.” He’s unusual, he’s different, and we try and praise that in him, that he should be who he is. And he’s a funny kid, he’s an outgoing kid, he’s polite, and let’s not look at the fact that he has trouble learning, he’s a beautiful artist even better than I am [laughter] umand he enjoys doing things for other people.

Tammy: That’s wonderful, that’s wonderful. Well, Thank you so much for sharing your story with us, I really appreciate it.

Grandmother: Okay. 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.

[End]

The importance of not taking your child’s behavior personally. Just Ask Mom Podcast Series, Episode 4

In this episode we speak to Paula, the adoptive mother of two boys from foster care. One son has PTSD, Trauma, and Autism. The other son has ADHD, Tourette Syndrome, and Anxiety. Paula talks about the importance of not taking your child’s behavior personally, the gift of adoption,  and the importance of laughter.

For a transcript of the podcast, go to https://mothersonthefrontline.com/podcast-transcripts/

Resources Mentioned in this Podcast

99 ways to To Drive Your Kids Sane by Brita St. Clair. – This little book is full of wild ideas and hysterical humor to bring the laughter back into a home with an emotionally disturbed child. Need a good laugh? This book will do it! It includes lots of “one liners” and silly, fun ways to help parents avoid anger around tough topics. Written by a very experienced and loving Therapeutic Mom with years of success helping tough kids heal.

Transcription

Female Speaker over music: 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 Paula, a mother of two adopted boys. One who has PTSD, Trauma, and is on the Autism Spectrum. The other son has ADHD, Tourette Syndrome, and Anxiety

Tammy: Well tell us a little bit about yourself.

Paula: Well, I’m a mom here in Iowa. We live in a semi little town but it’s in a metropolitan area so we have lots of great things around us. I have been married twenty-eight years.

Tammy: Congratulations. That’s wonderful.

Paula: Which is a long time. [Laughs]

Tammy: Yes it is. [Laughs]

Paula: Especially  – I mean I am not quite fifty but still, we got married when we were twenty. I mean so we were late to the family thing. We wanted to wait, we didn’t want to jump in. And for a variety of reasons being foster parents and adoption was the way that we decided to go. So we have two boys, they are now fifteen and twelve. The first one we adopted when he was three and a half and the other one was seven. So we are no longer foster parents. I did foster care training and stuff but we are no longer foster parents. Because of the level of needs that they both have, they need our full attention. So I am now a stay at home mom, but professionally I am rehab counselor and mental health therapist.

Tammy: Wonderful. So before we get started I always like to ask people about themselves before they were mothers or outside of mothering. So you told us a bit career-wise so just tell us a little bit about your passions and who you are before we get ….

Paula: Well I love lots of things – my husband and I joke that we are renaissance people so we like lots of little things. Before we had kids we were married a long time, which I highly recommend. I mean we got married young, we were twenty. But we didn’t bring kids into our universe until year thirteen or something. Before we had kids though life was moving along beautifully, you know just the way it does, but it wasn’t easy, actually my husband is a stage four colon cancer survivor.

Tammy: Oh wow.

Paula: So when we were thirty three, he was diagnosed with stage four colon cancer and at that time in 2001,  less than five percent survived stage four colon cancer. So um we were one of that five percent and so that definitely informs the way that we view the universe. We’re in year what?  that’s 2001-  so somebody else do the math  –  fifteen years that he is still you know alive, healthy, we had no recurrence. We went through everything you know all the chemo, liver resection, all the worse things humanly possible. So for us every day is a gift even after fifteen years. We often joke that I should have been widowed  –  had I been widowed what would I have done? That is what we worked on. You know in therapy — how do you deal with your life and literally I would have had a farm house with a bunch of foster adopted kids.

Tammy: That’s your passion.

Paula: So that’s probably what I would have done. I grew up in foster care and my mom had serious mental illness. She was bipolar rapid cycling and so this was something that was always on our radars to be foster parents and given the biology of our bodies, adoption was the way we decide to have a family.

Tammy: Wonderful. Thank you for that. So what would you like people to know?  You have so many rich, great experiences. What would you like people to know?

Paula: When I do trainings on trauma development and the way our brains work, my favorite thing to remind parents –  and it is so hard as moms, oh my goodness,  it is so hard – is to not take it personal. One of the stories that I share in my trainings is about when my son was five. He was very big for his age, he wore size eight, nine or real close. He is a big boy. I mean he is tall now too. But he was a big boy. He would rage and when you have a child that has trauma you can’t allow them to rage alone because it’s not that they need to calm down. You need to be their container. Mentally you need to be a container – a safe place for them and so, one of my favorite ways to remind parents not to take it personal is, he was in the middle of a rage and he just, his caveman brain was just in charge he couldn’t handle what was going on and we were sitting on his bed and I had my arms around him. He was sitting, on my lap and you know he was just in that fully fledged bucking mode and he bucked back and he hit my nose so that it hit the bridge and I got a hairline fracture.

Tammy: Oh.

Paula: If you have ever had one of those, you would rather have your nose broken. The hairline fractures are unbelievably painful but where I teach people not to take things personal is in that moment when he raged and hit me, cause I wear glasses. He hit me and I felt the pain, I knew instantly – this was just the thing that was going into my head: “If I say something now this could undo all the work we have been doing to help him bond and heal. “So I just held him for a moment and I said,  “honey I love you, I need to step out” and I stepped out and went to our bedroom, put my face in the pillow and screamed [Laughs] Some very colorful words.

Tammy: I bet [Laughs]

Paula: Took off my glasses and I went back in and finished helping him calm down. And then we went and figured out what was wrong. That’s a prime example of not taking it personal. Yes, he physically assaulted me. He broke my nose. That hairline fracture  –  I wore a little lightweight plastic glasses –  I couldn’t even put those  on –  but it wasn’t personal. It had nothing to do with me. What was happening was not to me, it was to him.

And so always remembering that, so that’s my extreme moment of even now as a teenager when he does things I have to remember, he is not saying this to hurt me, it’s his coping skill. And even when he does now he will say, he will, you know, use the “B” word and so he never uses it anymore because we turned it into a joke and I am like, “you know what buddy I really am and I am really good at it so thank you for noticing.”

Tammy: [Laughs]

Paula: And he stopped. [Laughs]

Tammy: You took the fun out of it! [Laughs]

Paula: Yes, I took the fun out of it. But also I deescalated it and didn’t take it personal. And so that’s one of my biggest wishes for moms is to not take it personal because it is so hard to not do that.

Tammy: Right. And as is the case with so many of these interviews so far, you are telling us something that is especially true when you have a child with mental illness, but this is true for all parents.

Paula: You know I’m glad you said that because our best friend, I love her – she says when she talks about us to other people or she even complains about her children, one of her children is the same age as mine, fifteen years old and they have been in school several times together and she will complain about her daughter doing something and then she just looks at me and smiles and she goes, yes I know Paula, it’s that, plus. So everything that happens in quote ‘regular lives’ is what happens to all of us.

Tammy: Absolutely.

Paula: Which is stressful.

Tammy: Oh yeah.

Paula: Being a mom of a teen is stressful.

Tammy: Yeah.

Paula: But I like the way that she articulated it. She is like, you know what, you guys have all the normal stress plus. And so it’s not that these techniques that we use with our family aren’t good techniques for everyone, it’s just that we have to be more cognizant of it and more mindful of doing it and the reason we are doing it. Its not accidental, that we use certain language or that we talk about topics more in depth than your average parent. Its purposeful and so I like that because she will do the same topic with her daughter and then she is like yeah, but you guys have to do the plus. So that’s kind of how I view our life work. Like everyone else, plus.

Tammy: Plus, exactly, yeah. Well that’s, I think a really helpful lesson. Is there anything else that you would like people to know in general. I mean you have done, by the way thank you, I always think we need to say thank you when people adopt children from foster care because you are doing not only something wonderful for those children but you are doing something for our whole community.

Paula: As a mom we feel guilt a lot and we feel the weight of the universe on us. And so again our friend that says the plus, I have stopped working for the past four years, almost five now. I got my Masters Degree and then I stopped working. So we were like, oh well that was interesting and so sometimes that guilt kills me. So I like the way that she rephrased it for me and that was, because we have this special needs adoption and we had to really fight for it. Which was really interesting given they were going to put him in an institution. But that’s okay, so we fought hard to get the highest level of special needs adoption but that wasn’t until he was like ten. So, you know we had five years of the first level. The reason that I could not work was because we had two boys that get the special needs adoption and so my friend reminds that, that is my job.

Tammy: Absolutely.

Paula: So it’s not that I am not bringing income into our family. It’s not that I’m not contributing financially. If I didn’t stay at home, and do all of the things that –  school calls and “hey you know this child is not doing xyz can you come and calm him down?” -, you can’t do that with a job or you get fired. So letting go of that guilt that you have to make certain sacrifices and that’s okay.

So you know that’s one thing and then the other thing is that I always I have a hard time saying thank you when somebody says you are great for adopting, because I grew up in foster care. I know that it is good that we adopted them, you know hopefully somebody would have eventually. But from my perspective, I was an infertile woman in my late thirties who cried every time she saw all her friends having babies. So in a way, it’s kind of selfish. I mean it works out both ways I mean I wanted children, couldn’t have children, I had a special skill set that could work with kids with trauma. So it’s like I want to say thank you for saying that but a part of me is always like I needed it too. So its sort of a fifty-fifty, yes we saved them but they saved us. So it works that way, it’s not “yay we are adopted foster parents whoo –hoo”. Its not that simple.

Tammy: I think most of the time when we reach out to anyone else, it’s helping us as much as helping them.

Paula: Yeah, exactly.

Tammy: That’s always the case. That’s right.

Paula: They have definitely enriched our lives in ways that we could never have imagined and they drive us absolutely insane.

Tammy: [Laughs]

Paula: In the same breath [Laughs]  –  but that’s what most parents say.

Tammy: Absolutely, absolutely.

Paula: But ours is “plus”.[Laughs]

Tammy: That’s right! So we ask this question of everybody: right at this moment, do you feel like you are swimming, drowning, treading water ? Where do you find yourself?

Paula: I’m swimming.

Tammy: Wonderful.

Paula: I mean I have really great support. Our school is amazing. It breaks my heart when I hear of families that struggle to get basic accommodations. Shout to the Iowa City School District. They have done amazing work with our kids.

Tammy: That’s great.

Paula: They have always listened to us. They value our opinion, we value theirs. I feel that we have a good support system. I mean I feel isolated sometimes just as a mom because there are no mom groups for kids like mine. Yet sometimes I just want to be hermit so it’s a give and take  – but I am swimming. I’m blessed –  I have an amazing husband who  – we are truly a partnership. I parent a fifteen-year-old easy peasy. Twelve-year-old, not so much. He parents the twelve-year-old easy peasy, the fifteen-year-old not so much.

Tammy: That works out nicely.

Paula:  So it has worked out really well. [Laughs].

Tammy: Yes, that works really well. [Laughs] When you and I were talking earlier you said –  and this seems to be universal among all of us moms  – “ if we don’t laugh, we would be crying all the time”, so we like to ask, what’s your most laughable moment ?

Paula: So we laugh about that because I ask my family, “Like gosh what’s the most laughable moment?” and they are like “we can’t parse this out because we are goof balls.”

Tammy: [Laughs]

Paula: When we adopted the boys and when we brought them into our family, the biggest joke was, you can’t join our family unless you want to be silly and so one of the books that I always take with me when I do trainings is, the book, How To Drive Your Kids Sane. It has all these little great tips of how to just do silly stuff like singing silly in the car with a fifteen year old. Because you do that with little kids but when you do it with older kids they crack up at you being so silly but then they are silly and they lose that inhibition and so we try to be silly. Our family is full of puns, we are constantly trying to out pun each other or alliterations and so laughable moments in our life are always around the dinner table. We always eat dinner together. So I ask my husband what’s a laughable moment for me and he is like, you know after all these years the one that always pops into his head is, I was extremely exhausted, I was working the third shift at Dunkin Donuts and, you know we were what? Twenty two, twenty three years old and, the phone would ring but I’m on the different body clock than everybody else in the house and he says that I would always try to pick up the phone but I couldn’t find it cause I’m asleep. So I would always pick up the alarm clock. And so this is one those plugged in alarm clocks from you know back in the eighties and he is like you would pick up this alarm clock and you like shove it to your face and realize it’s too big and that it’s not a phone and you just saw this look and like, why isn’t anybody answering this phone but I am asleep.

Tammy:[Laughs]

Paula: And so he says that’s always the image that he has of laughable moments about me. But I think we just try to laugh a lot like you were talking about self care –  so being funny and laughing is part of our self-care, of my self care. I am an avid knitter, and that has its own laughable moments whenever I make mistakes and have to undo stuff or you know I make silly things for the kids, yeah, so I can’t come up with one cause there is like ten from just going over to Hurtz donuts this morning.

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

Paula: No thank you for doing this.

Female Voice over Music: 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.

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]

On Raising Children with Schizophrenia Decades Ago, Just Ask Mom Podcast Series, episode 2

In this episode, a mother reflects back on her experience raising children with schizophrenia decades ago. She discusses the difficulty of coming to terms with the diagnosis of schizophrenia, how the National Alliance on Mental Illness (NAMI) Family-to-Family program helped her and her children through this journey and the importance of self-care.

Topics discussed include schizophrenia, agoraphobia, NAMI, self-care,

Transcription:

Female Speaker: Welcome to the “Just Ask Mom” Podcast, where mothers share their experiences of raising children with mental illness. “Just Ask Mom” is a Mother’s on the Frontline production. Today we will hear from a mother and active Mental Health Advocate. She has an adult son with early onset schizophrenia.

Tammy: So tell us about yourself?

Mother: Well I’m considered elderly now, not middle aged. [laughs] I have lived with severe mental illness in my family for close to 18 to 20 years now.  I originally grew up in a small town in Iowa and was involved in everything that you could be involved in in high school. I got a college degree. Went to work for the federal government and raised through the ranks even though I was a woman. Because when I first started they didn’t want women in supervisory positions and I eventually got into them anyway.

Tammy: That’s awesome, thank you by the way from us women who come later, we appreciate all that you did to make the path.

Mother: Mostly, it was like two dollars and 40 cents an hour, that’s what I’ve initially worked. And at that time I was unmarried and had a son. The choice actually was being on welfare or going to work and it was the same amount of money per month. So. It was interesting.

Tammy: So pretend you’re talking to other parents who might not fully understand your experience. What would you want them to know?

Mother: Well, first of all, to take it easy on kids – especially the ones that have some special needs because they’re scared out of their wits by what’s happening to them. And they are always fearful that somehow you’re going to turn them away or make fun of them or be ashamed of them. I just found that he needed me to always have a smile on my face – that you have to make a concerted effort, not ever to be mean to them because that ruins the trust. The focus of a lot of advocacy work that I do is to keep families together. And not to blame anybody, because this is an illness without blame. It’s simply a medical illness and it’s hard to adjust to it. So we have to kind of give ourselves a break there too because I can remember being in denial for a long time and not wanting to accept it, not wanting to let go of my dreams for my kids. Finally its almost like somebody goes ‘whack’ on your face. “Wake up! This is going on and you need to do something about it!” I can remember the first time I tried to tell someone that my kids had schizophrenia. I couldn’t say the word. It took at least half a dozen tries before I could get the actual word out of my mouth. And then I started getting angry. You’ll get angry because you’ll run into a lot of people who simply don’t get it and somehow think your kids have turned into ‘its’, they’ve lost their intelligence, they’ve lost their emotions, they’re some kind of an oddity and you always have to try to turn their attitude on that. So I’m just interested in making sure that kids don’t have any more trauma than absolutely necessary if they have those special needs.

Tammy: So how are you doing right now? Do you think you feel like you’re swimming? Drowning? Treading water at this moment?

Mother: Depends on which topic. I think I’m swimming as far as things are going in our family. With what’s  going on at the State Legislature and nationally and locally –  I think we’re drowning because we are under assault on so many things. So once again, depends on the topic.

Tammy: Yeah. What is your sub-care routine or if more appropriate survival technique? What do you recommend for people to do when it gets really tough?

Mother:, I steered away from anything that was really serious. Like, if you were watching TV.

Tammy: Yeah?

Mother: I would make it a point to watch Disney movies because I didn’t want anything more to really alarm me. Also because you’re so involved with your kids during the day. Once they’re asleep, you know, that’s when I felt I could kind of let my hair down and I could cry after they went to bed. Or if I really needed to get out of my life and into somebody else’s I would read a book. Thirty minutes or an hour of reading before I went to bed would help. I was divorced at the time that this all happened and so many people have turned away because they didn’t know what to say. I didn’t realize it at the time but I was really hungry for a tender touch so one of the first things that I decided to do was to go have my hair done. Because somebody else is washing my hair and it always feels good when somebody’s washing your hair and fiddling around with it. It really didn’t matter whether it turned out nice or not. It was just the fact that it felt good. I also went to full body massages. And I’m going to go back to that. That always made me feel really good too. Physically I had to have some touch that reassured me that I was — I was still here. Emotionally I had to get out of my life into something else. So that’s what I did.

Tammy: So, a lot of times if you’re not laughing, you’re crying or screaming, right? With all that you’ve been through, what is your most laughable moment that comes to mind?

Mother: Oh, the most laughable moment – I had just taken NAMI family to family and one of my kids almost agoraphobic where they didn’t want to go out because they had so many panic attacks. They were afraid that no matter where they went, people would remember them and make fun of them or all that kind of stuff. And I came home from work one day and my child was sitting in the chair and I said, “ I just do not feel like fixing anything for supper, Let’s just go out and eat.” I said “we can afford it, so let’s just go out.” My child looked at me and said, “Mom, you know that I can’t do that,” and I knew because of the Family-to-Family training that there was a certain way I should respond to that. So I said, “hold on just a minute.” I went out of the room and found my book.

[Tammy laughs]

Tammy: They say kids don’t come with manuals, they don’t know about NAMI, I love it! [laughs].

Mother: I looked it up [laughs] and I tried to be calm, As I walked back in I said, “I’m really sorry I didn’t acknowledge that you have a hard time doing that. Maybe we could just order something and have it here. And she looked, she dropped her book and she says, “Oh my God, you actually acknowledge my feelings.” And here all this time when I was going to these classes I knew she was looking at the book. She had been going to a lot of therapy and she knew just as much or more than I did about what I should be doing. I just laughed about that every time.

[Tammy laughs]

Tammy: That’s awesome, that’s so  great. Thank you so much for sharing your story. I really appreciate it.

Mother: Mm-mm.

Tammy: Thank you.

Female Speaker: In today’s discussion, NAMI was mentioned. NAMI is the National Alliance on Mental Illness and NAMI Family-to-Family is a free education program for family, significant others, and friends of people living with mental illness. You can find out more about NAMI and its programs at nami.org

Female Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in March 2017 by Mothers on the Front Line. Today’s podcast host was Tammy Nyden. The music is Olde English, written performed, and recorded by Flame Emoji. For more podcasts in this another series relating to Children’s Mental Health go to mothersonthefrontline.com

[End]

 

Raising a son with Schizophrenia, Just Ask Mom Podcast Series, Episode 1

Anna discusses raising a son with childhood-onset schizophrenia on a Midwestern farm, the journey to the right diagnosis & medications, and what there is to celebrate.

 

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 Anna, the mother of a son with early onset schizophrenia.

Anna: My name is Anna and I’m from the Midwest and … oh, gosh. I went to college for computer information systems, got my degree, worked for the railroad for a number of years in information systems and married a farmer. So it’s quite a diverse life.

Tammy: Yes.

Anna:  Yeah, that’s a little bit about me.

Tammy: Very cool.

Anna: I always wanted to be a mom. Growing up, you know, I always imagined myself with five kids and when I got married to my husband, I mean, I just really imagined our life as a typical farm family, lots of kids and dogs and, you know, running around outside and life didn’t happen that way.

[music]

So we have one son, and he was actually adopted from Russia. He was 14 months old and at the time. We always expected when you adopt a child from an orphanage situation like that that there’s going be some catch up. There’s going to be some things that you need to do to play catch up. Matthew always stayed behind, though. He never was able to catch up and working through that as he got older, more and more issues came out and come to find out when he was 13 he was officially diagnosed with early onset schizophrenia. [He] had symptoms starting at the age of eight and that was a very hard thing to accept as a parent, especially when it’s your only– I mean, it’s always hard, but when it’s your only child and you’ve gone through so much to get this child and um– I went through a pretty major grieving process, you know–

Tammy: Absolutely.

Anna:  So the thing that I want other parents to know: when you’re dealing with a child with special needs and that has such a serious illness, — it’s okay. It’s okay to grieve, it’s okay to grieve for that child that you had in your heart, that you expected, that you always pictured that you would have raised. That is a loss and you shouldn’t feel guilty about grieving for that child, but then you have to move past that. You have to get to a place where you accept that child for who they are. It’s easy to say and hard to do but once you get to that place where you have truly accepted that child for who they are and for their abilities– although they may be different than what you expected, you– you’ll find that things are easier. You’ll find that it’s not as hard to accept where they’re at and enjoy them for who they are and every day becomes easier.

Tammy: This is especially a lesson you have to learn in this particular situation but what you’re saying is true for any parent.

Anna: Sure. Absolutely. For any parent, any child. You can have a child that is neuro-typical but they don’t have the same likes as you do and they don’t have the same interests as you do and you guys are polar opposites and you still have to accept that child for who they are. You may butt heads but you have to realize they are their own individual. Absolutely.  I think for my husband, I’ll kind of speak to that little bit– he’s a farmer. He’s a typical Midwestern farmer and grew up in a very sheltered environment, you know, didn’t ever really have any exposure to the big city and diversity and things like that, and it was, I mean, he had it in his mind his expectations of his child would be that they would help him farm. They would grow up learning that and doing that and that wasn’t something that Matthew could do. That was really hard for him to accept and as long as he wasn’t accepting that, as long as he was fighting that internally, he was miserable. Once he was able to accept that, he could move on with his life and he could be happy and enjoy his son again. And so it’s not just for the child, it’s for us.

Tammy: Absolutely.

Anna: You know, and I’m not saying that everything’s roses once you accept that -once you learn. Some people accept that easier than others and it’s not all peachy keen after that. You still have to fight for your child. I mean, I got involved with Mental Health Advocacy here in our State because there is so much lacking and there is so much that needs to be done yet. It’s not fair. We should not have to become mama bears at the school and fight so hard for what is rightfully deserving of them. And it is still an issue but it doesn’t become all consuming, I guess, once you can accept that I think it frees you up a little bit to stop obsessing about what they can’t do and focus on what they can and then that helps you when forming that IEP [Individualized Education Plan] and when talking to the doctors and trying to find a medication that works, then you’re not as miserable doing all of that I guess.

Tammy: Absolutely. One thing you and I talked about and I was wondering if you’d share here is (and this fits into what you’re talking about with expectations) is how your parenting changes because what your child needs is not the traditional method of parenting.

Anna: Right.  Absolutely. Again, my husband is a farmer and he grew up, and myself too, I grew up in the Midwest. I was raised when I was young on a farm and then we lived in a small town and we were both very much raised by ‘pull yourself up by your bootstraps’ –  I mean with very common sense parenting and spanking was not unheard of. That was just how we were raised and that’s the example we had as parents and so when he was young and things would happen, I mean, we didn’t spank. That wasn’t really what we wanted to do, but we would use sticker charts, we would use timeout, we would use all the things that you could think of, grounding and taking rewards and punishments. We tried everything and nothing ever seemed to work. It was so very frustrating and you would get so angry and frustrated and then you find yourself raising your voice and you’re yelling and it’s constant and nothing ever works and you’re just pulling your hair out.  Once we finally accepted his diagnosis and learned we simply can’t expect the same things. We cannot put as many demands on them. That’s part of that acceptance process that I was talking about as a parent – accepting your child for who they are and what they can do and once you realize that, then naturally your expectations change and so your parenting style does change.

Tammy: Thank you for that. That’s right. So, we ask everyone this. We know it changes from moment to moment. At this exact moment, do you feel like you’re swimming, treading water, sinking? Where do you feel like you’re at?

Anna: I feel like we’re swimming.

Tammy: Wonderful.

Anna: I feel like we are– it just makes me want to cry. I think [laugh] because we have come so far. I mean we came from a place where, I would say five years ago I was not sure I was ever going be able to have my son in my house again. He was violent and we had to place him in the PMIC [Pediatric Mental Institution for Children] and we just didn’t know where to go. We had no idea where to turn for help. We could not control him any longer. I just couldn’t imagine him ever coming back home, ever graduating from high school, ever having a life that was meaningful to him. Let alone something that we could call successful. Today he is getting ready to graduate from high school, he has been back home with us for almost five years and he’s getting ready to graduate high school, he’s going to prom.

Tammy: This is so wonderful.

Anna: He is just– he is excelling in so many ways and I could have never imagined that. So, I mean, we’re in love with life right now.

Tammy: A lot of hard work went into that.

Anna: A lot of hard work went into that. It was a combination of the doctors and finding the right medication, getting the right diagnosis first of all and then finding the right medications, and then finding the right school. We ended up finding this awesome therapeutic school that he went to for about three years and they were just phenomenal. So finding the right school environment and changing our parenting style and having the right support at home. We had a waiver from the State that allowed some in-home assistance, you know, with therapy and things like that and all of those things created this beautiful movement towards putting him on the path to success

Tammy: And now he’s a contributing member of society.

Anna: Absolutely.

Tammy: He’s working.

Anna: He has a job lined up for after he graduates. He’s planning on having his own apartment. I have every reason to believe that he will be successful. Five years ago I couldn’t have imagined that.

Tammy: Right. So, all of those services made all that difference.

Anna: Everything made all the difference. It was not just one thing that I could point to, without one thing, without the others would not have had made much of an impact. I don’t believe.We had to change every aspect of his life to help set him up for success and help him learn about his illness and help him accept his illness because that’s a whole process too.

Anna: And he knows, I mean, I have probably the biggest reason that I feel like he will be successful is because he knows he has an illness. He accepts he has an illness. He knows the medication helps him and he is absolutely adamant about taking that medication because he knows that helps him. So many times with schizophrenia people start to believe that the medication is making them sick –I’m not saying that that might not happen in the future. This is just where we’re at today, but he knows [the medication] helps him and he wants to take it and if that continues that is what will help him be successful and help him work.

Tammy: I just want to sort of have you bring out one other piece because I think this is so important for parents that are in the middle of the journey, like where you were five years ago. You had mentioned he was eight when he started having symptoms but he got his diagnosis of early onset schizophrenia at 14.

Anna: At 13.

Tammy: Oh, at 13. So, there were many years of changing diagnoses and not knowing.

Anna:  For five years, it went from PDD NOS to, well,  first, it started out at age six, that was ADHD, and then at age eight it was Tourette Syndrome and PDD NOS, which is Pervasive Development Disorder [Not Otherwise Specified], and he was having hallucinations at that time and the psychiatrist told us then that some people that are diagnosed with PDD NOS go on to officially be diagnosed with schizophrenia. So, it was thrown out at that time but he was way too young to have that diagnosis. It was just going to be time would tell and then it went on. We went on to add generalized anxiety disorder and OCD and then bipolar mood disorder and all of these diagnosis brought on other medications. And every medication specifically to treat the mood disorder or to treat the anxiety or to treat the ADHD– they all did different things to his system. We just never knew what was doing what, and so it was really hard to suss out what was him or was the medication. And so it was a constant changing of medication and trying to find a combination that worked and this whole time he’s getting worse. He is getting sicker and no one was really addressing the psychosis, which was really the elephant in the room. He was so bad by the time he went into residential that he was completely incontinent both urinary and bowel. He couldn’t get through an hour without a meltdown of some sort and getting angry. He wasn’t sleeping at night at all.He would be up all night. There were times before he went into residential, we were taking turns sleeping in his room. He had trundle bed in his room. We would shut his door, push the trundle bed back up against the door and sleep in his room with him. He wouldn’t sleep but at least we knew he was safe, Then we could sleep. Before that he was up all night and he was doing things that were not appropriate like taking apart light sockets, painting the wall, taking apart his closet doors and at one point he got a hold of some candles and matches and was playing with those, burning spot on the floor. Luckily he didn’t catch the whole house on fire but, he was hiding knives in his room. There were a lot of things he was doing that were dangerous – so that was one piece of it but then he was trying to put his head through windows. [There was a lot of self-harm and there was a lot of hospitalizations in there too. He was having a lot of hallucinations –  seeing knives coming out of the walls and Mario was chasing him around the house with the battle ax. When we first realized he was having hallucinations, I’ll never forget.  He came up to me, he was eight years old and he came up to me and he was crying and he said, mommy, I don’t want to kill myself, and I said, well ,what do you mean you don’t– of course, you don’t want to kill yourself. Well, I don’t want to stab myself but they keep telling me to stab myself and I’m like who? – trying to figure out who they are. Is it somebody at school bullying him? This was on a Saturday I think and so I– no, a Friday –  kept him home from school, called the psychiatrist. Long story short, we ended up going in to the hospital to be evaluated. They didn’t– because he was so young– and he didn’t really have a plan. He didn’t want to die. So they didn’t admit him but that was our first realization. Then in the ER, when they were talking to him, they were asking him, does he ever see odd things and he’s talking about these people he sees hanging from nooses, [it was] very gory. I was just completely shocked. Not long after that we were in the grocery store and he just looked at me with this forlorn long look on his face and he said, mommy, why– why does God make me see all these people that aren’t here, which was really interesting when he said that they aren’t here.

Tammy: He knew?

Anna: He knew they weren’t real and I said what do you mean, do you see them right now? We were in the grocery store in an aisle with no other customers and I said do you see them right now and he said, yeah, and I said, well, how many people do you see and he just sighed rather heavily and he said too many to count. It freaked me out in the beginning–

Tammy: Yeah, of course.

Anna: Of course. I wasn’t ready to accept the diagnosis of schizophrenia even at the age 13, even after five years of going through all those changes and all those med changes and all those different diagnoses. I kept thinking it’s not possible for one child to have so many things wrong with them. It’s not possible for one child to have all these different diagnoses and you know and then they added schizophrenia on top of this I just I couldn’t believe it. There had to be another explanation. So we went to doctors all over, we went to Mayo Clinic, we saw a lot of specialists, thinking well, maybe it’s something genetic, maybe there’s another explanation – another diagnosis that encompasses all of these and to no avail. Nothing else was ever found. I really think– I believe and I don’t know if the doctors would agree but I believe that schizophrenia is the main diagnosis. Schizophrenia is his diagnosis. It’s just that when you’re six and you have developing schizophrenia  – and I should say schizophrenia and mood disorder combined. He definitely has a mood disorder, but when you have these things and you’re six, it looks like ADHD. And then when you’re eight, because the movements and things go along with the schizophrenia – it still is technically, clinically Tourette syndrome but um–

Tammy: But that’s pretty generally defined, right? Like, over a year you have a vocal and a motor tic.

Anna: Absolutely. But if you look at people with schizophrenia a lot of them do have movement disorders. And so does he fit the diagnosis in all these? Absolutely, if you look at it from a clinical standpoint. But you have to look at the bigger picture and say guess what. He has schizophrenia and because he has schizophrenia it causes him to have a lot of anxiety. I mean, schizophrenia is like granddaddy of anxiety disorders! So, of course, it’s going looks like he has generalized anxiety disorder and OCD and he is going be inattentive. So it’s kind of looks like he has ADHD because he can’t focus on anything because all he has is this internal stimulation. And he’s going to have movement disorders because that’s just part of what goes along with it and so, does he have all these diagnoses? No. He has schizophrenia.

Tammy: But that was a really long journey to get to it.

Anna: Absolutely.

Tammy:  I’m really glad that you’re sharing this because there are so many moms who might be hearing this, who are in the middle of it and it just seems like they’re never going to get to a point where things are okay. And you share that they can.

Anna: You can. Absolutely you can. You will get there and it won’t seem like it at the time. Some days it will absolutely tear you apart, but keep pushing, keep persevering, keep being an advocate for your child. Be that mama bear that you need to be and you’ll get there. You know I told my husband we’re going to have this graduation party for my son and I said you know, I’m pulling out all the stops for this graduation party. I said because this is just as much my retirement party as his graduation party because I’ve made a complete career out of his education and getting him to where he is now. Now I can kind of sit back — not that my job’s completely over –but I can relax a little bit and let him kind of begin his life and I feel confident that he can do that right now.

Tammy: Okay, this is about as heavy as life can get, right? So, we ask everyone the same last question. What’s your most laughable moment and I’m sure there have been many but what comes to mind as something that makes you smile through all this?

Anna: Oh gosh. I don’t know if I have that one laughable moment. I know there’s a lot of moments I look back on and think, God, why the heck did I do that? and kind of beat myself up over it. I think back and  it’s kind of funny now– but it’s not really but I don’t know maybe you guys can relate. So, this one time Matthew was five, I want to say and looking back now I know he has some developing psychosis but of course at that time I had no clue.

Tammy: Five year old’s have big imaginations so it’s not easy to know.

Anna: Absolutely, and like I said, we did not like to spank Matthew.

Anna: I mean, I was at my wits end. Nothing was working as far as punishments and rewards and timeouts and I mean I put him in time out and he would just laugh at me. So I decided  I just had enough and we went to the mall. I had to go in real quick. He didn’t handle the stores very well at all at that time but I had to go in there and pick up one item for a baby shower, something real quick, and I told him,“ if you can just bear with me and we’re going run in here,  I’m going get one thing and we’re going to go back out and then we’ll go to McDonald’s.” You know, his favorite place to eat and we will get some chicken nuggets and you know, I said, “just please,” you know, I’m begging with him. I’m bartering with him at the time, and of course, we go in the mall and he starts. He is just being an obstinate little kid hollering about, “I wanna go, I wanna leave”. Looking back I think he was fearful. Yeah. I think he was afraid.

Tammy: I see.

Anna:  And I think he was probably seeing things and hearing things that I didn’t know anything about.

Anna: He just kept hollering at the top of his lungs how he wanted to leave wanted to go. I told him, I said, “Matthew if you don’t stop right now then I’m going to spank you.” He just looked at me. I’m telling myself, it’s come to this. I have to do this. He kept on, he kept on. I said, okay, every time that you holler out that’s one more spanking. So we never did make it to the store. I ended up turning around and going back to the car and no McDonald’s. We were going home and we lived about 30 minutes from this mall. So, all the way home he is laughing at me and giving me this shitty little grin. He says, “your spankings don’t hurt. You can’t hurt me!”, you know just being this little shit. And so I kept adding one to it every time he would back talk me. I would add one to it, by the time I got home I was up to like 36 you know, and I had to follow through.

Anna: I had to spank him 36 times.

Anna: And it was horrible but I did it and it didn’t help. You know, he laughed, he– and it was that manic crazy laugh the whole time through it and looking back now I know that he was dealing with psychosis. I had no clue what psychosis was. I had no clue what mental illness was at that time.
And, you know, that’s another thing through this whole process – I have learned so much about mental illness. I used to be one of those that I looked at homeless people and thought, “if I can get a job, if I can pull myself up by my bootstraps then you can too.”  I didn’t understand what severe mental illness was. I really didn’t and I didn’t have a lot of compassion for those people. I feel like that’s part of why God put Matt in my life because he wanted me to learn that lesson. He wanted me to understand and have more compassion. Not that that moment at the mall was funny but looking back, you know, I mean we have to kind of laugh at ourselves and at the judgement calls we make and not beat ourselves up about it too much because we’re going to make those mistakes. We don’t know. It’s a learning process.

Tammy: Absolutely.

Anna: And we have to continue learning.

Tammy: Absolutely. Well, thank you so much. I really appreciate this. I know many people will benefit from your story.

Anna: Thank you.

Speaker: You have been listening to ‘Just Ask Mom’ recorded and copyrighted in March 2017 by Mother’s on the Frontline. Today’s Podcast host is Tammy Nyden. The music is “Olde English”, written, performed and recorded by Flame Emoji. For more podcasts on this and other series relating to Children’s Mental Health, go to Mothers on the Frontline.com.

New Diagnosis, New Beginning

A lot has been going on behind the scenes here at Mothers on the Frontline. We have been busy doing interviews, working with our amazing team of Grinnell College Student Workers to prepare our first Podcast Series “Just Ask Mom”, learning about the creation and accessibility of websites, and so many other things completely new to us. So while we have been quiet  during March and April, we have been here, busy preparing for May: Children’s Mental Health Awareness Month (more on that in a later post).

In some ways our journey to Mothers on the Frontline is very much like the process of becoming a special needs parent. There is a steep learning curve and many different moving pieces that somehow now you have to find time and energy to navigate, while still having to steer your ship through the pathways of running a home and family, being an employee, and all the other obligations we all must meet. It is overwhelming, but at the same time exciting. For years now a vague idea and sense of unmet need has been part of our conversations – those between Dionne and I. It is not completely unlike that strange pre-diagnosis experience, when symptoms and challenges are appearing in your child and you know you need to do something, but what is so unclear and there seems to be no source of reliable guidance or sure answers. But all of sudden (or so it seems, though it was years in the making) you get a diagnosis and things change. No, not the child. The child is the same, their needs are the same. But with a diagnosis comes a ray of hope that you will be able to figure out what to do now. That you will finally find your “people”- other care givers on the same journey that can recommend service providers, school accommodations, and most importantly, help you reimagine your role as care-giver. No child comes with directions, but when your child has special needs, particularly those that involve social, mental, or intellectual development, those that involve regulation of mood or extreme anxiety, hearing voices, or wanting to die, well, it is even more confusing how to best meet your child’s needs. Interestingly, as we talk to other parents and reflect on our own experiences, the most important thing is re-conceptualizing our role as parents.  Changing our attitudes and instincts. Learning to look at behaviors through new eyes, not as things to modify, but as indicators of what our child needs and the realization that when those needs are met things start to change for the better. What use to be tantrums became meltdowns. My previous unsuccessful attempts to double-down on consequences gave way to understanding that painful sensory stimuli (or lack of it) needed to be addressed before my son could stop screaming, hitting, etc. I learned that while a time-out or lecture only intensified and lengthened the “behavior”, he quickly became calm after wrapping him tightly in a soft blanket and applying pressure, giving him fidgets to squeeze, or simply allowing him to vent all of the bad thoughts he needed to get out without consequence. It not only involves creativity, but a raw honesty about what I am uniquely situated to provide my child, and what needs he has that I am unable to meet. This is key, because we realize that to help our child we have to become part of a team, a team of providers, educators, community members, etc.

I do not mean to minimize the  journey to diagnosis by comparing it to where we are at this point in our project. I only wish to bring you into our journey, to share that we are in the process of re-conceptualizing our roles as academic-mother-advocates. We finally feel able to articulate the problem with which we were struggling – the lack of public understanding and therefore lack of political will to address the children’s mental health crisis. And with that diagnosis, we are now ready to enter into a team effort with the community, with you, to re-conceptualize so many issues in our society, from youth substance abuse, incarceration, homelessness, and school violence. Our recommended treatment: stories. Wrap our community in stories that warmly and gently increases the pressure so as to help us as a society move beyond anger to understanding and effective action. What better storytellers to begin with than the Mothering?

So we thank you for your patience. Just as parents of a newly diagnosed child learn new vocabularies, skill sets, and how to bridge communities for the wellbeing of their child, we are learning new vocabularies, skill sets and hoping to bridge communities for the wellbeing of our shared society. We hope to be a bridge between caregivers, consumers, advocates, activists, and academics. We hope to build this community around stories. We begin with personal stories of mothering, because that is where we find ourselves.

No, wrapping my son tightly in a warm blanket did not make everything better. But it was a start. Stories in themselves will not be enough. But it is a beginning of re-conceptualizing problems so that we can become more helpful, more compassionate, and in the end, more effective in making things better for us all.

Where to begin…

Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so the systemic problems preventing kids from getting needed services.

Mothers on the Frontline started with one simple idea:

Mothers have unique insights into the needs of their children.

Not an earth-shattering idea, is it?…
Or maybe it is a game-changer!

What if we created a website that would allow mothers to share their stories, their wisdom, their experiences, in such a way that they would:

  1. Be empowered to most effectively help their children
  2. Reduce the stigmas surrounding children’s mental health
  3. Give decision-makers key insights to help them better help our children

That would be game changing.

My perspective as a mother has often been downplayed or dismissed by professionals, whether they be doctors, educators, or the many therapists who have come in and out of our lives. It is not that these individuals are anything less than caring people who have dedicated their lives to helping children – it is that they have been taught to think of themselves as “experts” on whatever is ailing my child, though they have known him for less than five minutes and only see him through their narrow professional lens.

Here is where the conundrum lies: all of them have valuable knowledge and experience to potentially help my son, but taken together, the result is most often contradictory advice, services in silos, failure to address the whole child, and unnecessary trauma for both my son and family.

I wish my experience were unique. It is not.

A few years ago, I was desperate. I was unable to get the school district to set up and consistently follow an Individual Educational Plan that was appropriate to my son’s medical diagnoses and unable to access medical services he desperately needed because of a three-year waiting list for Iowa’s Children’s Mental Health Medicaid Waiver.

After trying everything, I called my state senator. He generously met me for coffee. That meeting changed my life in two ways:

  1. He helped me understand how to navigate a broken system. (For example, when the director of special education did not return my phone calls or e-mails for months at a time, he recommended that cc my next email to the board of education. I did and got a reply within a half hour.)
  2. He helped me understand that elected officials want to hear from mothers. Politicians are aware that professional associations and their lobbyists have ulterior motives; but they know mothers are focused on the wellbeing of their children.

Wow! Let’s take that in… not only do elected officials want to hear from mothers, but our voice is critical to effecting change.

My first thought was “mothers of special needs children are doing everything they can to survive the day – we are not in a position to be politically active.”  (At the time I was bringing my son to five different therapy appointments a week and working full time -absolutely necessary given the out-of-pocket expenses not covered by insurance. Not to mention my son’s condition prevented more than two hours of sleep at a time – for either of us.)

Circumstances changed that year – my son’s symptoms became much worse and we were no longer confident that he was safe to himself, and possibly to others. After his first mental health hospitalization we made the heartbreaking decision for him to live in a PMIC (Psychiatric Medical Institution for Children), where he lived for nine months.

These months were a time of healing and recovery: for a period of time I knew my son was safe and saw him flourish academically in an educational environment that met his emotional and developmental needs.

As for me, the reduced stress, regular sleep and less complicated schedule of those nine months gave me the ability to look beyond daily survival for more sustainable and systematic solutions. I became a children’s mental health advocate.

Since then my son has finally received the Children’s Mental Health Waiver. Its services have been key to his success living in the community. Our struggles are not over, but each year he becomes better at articulating his feelings and asking for help before he escalates or considers hurting himself.

Advocacy has become a regular part of both of our lives. He has become a Tourette Syndrome Ambassador and works to help others better understand the condition. This work has blended nicely with his passion for politics and he has enjoyed opportunities to talk to legislators at the state and federal level.

As for me, I have spent the last few years contributing a mother’s point of view to state-level discussions on children mental health health policy. This work motivates me to find ways to help other parents share their stories, their wisdom.

Which brings us back to idea behind this website:

Mothers have unique insights into the needs of their children.

The goal of Mothers on the Frontline is to empower mothers to share their wisdom and a platform to do it.

In doing so it can also give decision makers a deeper understanding of how children’s mental health issues intersect with family systems, educational systems, juvenile justice systems, health care systems, communities, etc. In other words, its helps professionals and elected officials have a better view of the needs of the whole child.