Just Ask Mom, episode 17: “It doesn’t have to be this way”

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In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.)

Suicide Resources:

The National Suicide Prevention Lifeline is 1-800-273-8255

The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.

Trans Lifeline – Trans Lifeline is a national trans-led organization dedicated to improving the quality of trans lives by responding to the critical needs of our community with direct service, material support, advocacy, and education. Our vision is to fight the epidemic of trans suicide and improve overall life-outcomes of trans people by facilitating justice-oriented, collective community aid.

The Trevor Project – The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.

You Matter -This is a safe space for youth to discuss and share stories about mental health and wellness, created and administered by the National Suicide Prevention Lifeline. You Matter blog posts are written by a rotating Blogger Council of individuals between the ages of 13-24 that are passionate about suicide prevention and mental health.

 

Transcription of Just Ask Mom, episode 17

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(music fades in)

Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience.

(music fades out)

Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you?

Melissa: My name is Melissa and I’m a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing.

Tammy: You like watching lots of things grow, it sounds like.

Melissa: Yeah.

Tammy: That’s awesome. I want you to pretend that you’re talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family’s experiences?

Melissa: I would say that our experience as parents with a child with debilitating mental illness – would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just– so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it’s very challenging on a daily basis. When you’re feeling the doors slammed by parents or peers that don’t necessarily know the story, it just makes life that much harder.  (2:00) My child has a lot to give to this world. He’s beautiful and he’s kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open.

Tammy: You bring up a really good point because a lot of times, if our children are sick, let’s say if they have a physical illness or the measles or what have you, people would naturally say, “Oh, how is your son doing?” Right?

Melissa: Right.

Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right?

Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it’s how people who are diagnosed with AIDS in the 80’s feel.

Tammy: Yeah.

Melissa: So instead of feeling that love and that warmth when they were diagnosed with something. They were judged and I feel that very much in the mental health space here. In a lot of ways, it’s how the kids and the patients are treated. How many cardiac patients or cancer patients do you know that need to go from one doctor to another? And they’re transported in the back of a sheriff’s car in handcuffs.

Tammy: Exactly.

Melissa: That’s how they’re transported.

Tammy: When they’re most vulnerable and in the most pain.

Melissa: Right.

Tammy: Right.

Melissa: They’re actually taking– yeah. They’re handcuffed. I know my son had a really hard time one time because he didn’t even have a seat belt on so that gave him anxiety. The person was driving and on his phone. I think you just feel very out of (4:00) control, anyway; when you have something like this.

Tammy: That’s a really good point. Even when you think about all the years, all the trying to help your child, what has been a barrier to getting the help your child needed? Something that– it’s a barrier or just didn’t work.

Melissa: His situation is very severe. I think some of the barriers that exist are constant therapists that are a good quality. When you’re living in a small space, people come and go. There’s a high burnout rate.

Tammy: So consistency–

Melissa : Consistency

Tammy : — really no consistency.

Melissa: There’s a very little consistency but I would say the same thing even with psychiatrists and getting meds. Because currently, the situation is now he’s an adult, and in the acute care setting you go into the hospital and– he has severe depression. We’ve been in and out of the hospital in an acute care setting maybe thirteen times in the last eight years and in the last six months probably five or six times.

Tammy: Wow.

Melissa: The problem is that continuity of care because you go into an acute care setting and his is suicide; just not wanting to live. You’ll see a whole new team of medical professionals and they’ll have an idea of what’s happening. He’ll go into another space and then they have their own idea and their own med recommendations. Unfortunately, for the patient you’re really not getting the (6:00) highest quality of care. I will say that our experience in the last six months has been even more challenging because he went to a hospital in Central Iowa. When I got there, they had actually prescribed him a medication that he had overdosed with.

Tammy: Already before they prescribed it?

Melissa: Right.

Tammy: Oh.

Melissa: But now that he’s an adult, I’m not given all of the information and so he was discharged with 90 pills that he had already OD’ed on as a youth. Two weeks later, he OD’ed on them and ended up in that same ICU. When I talked to the behavioral health staff, I said, “Did you look at his history?” She said, “We’re not required to do that. That’s not something that we automatically do.”

Tammy: That’s shocking when you think about.

Melissa: Well , And my reply to this person was, “Well, okay. So, if I came in here with a cardiac problem–”

Tammy: Yes.

Melissa: “–or you know some other chronic issue, would you not look at maybe some of my past history; even meds, anything? Just to make a better and more informed choice.” She said, “Well, on this floor, we just don’t do that. It’s not our policy.”

Tammy : Oh–

Melissa : In Iowa, we’re facing a really challenging time getting access to care maybe more so that other states. But — I just looked at the woman and I just said– no things have changed and we are seeing less and less help. I can see the acute care institutions are overwhelmed.

Tammy: Absolutely.

Melissa:  They are completely overwhelmed – but I looked at her and I just said– I think what I’m hearing is now these people don’t have access to chronic care –  which they don’t as an adult. (8:00) Currently the situation is that these people who are the most vulnerable are now going to you for an acute care setting, which is also very limited. We’re not even giving them that quality of care.

Tammy: But then even afterwards there’s no sub-acute to keep them well. They just send them up right back into acute again.

Melissa: Right. Right. Or discharge them and refer them again to outpatient services.

Tammy: You mentioned something that’s really important and you’re at that key point, you could speak to it. You dealt with it when your child was a minor and now he’s no longer a minor and your role shift whether you want it to or not, right?

Melissa: Right.

Tammy: Can you speak a little bit to that? When your child, well this differs too because sometimes it’s even 12 when they say now the kid gets to have more input but —

Melissa : Yeah. Yeah.

Tammy : – at least when you’re the mother of a minor child, you can tell the doctor, “Make sure to remember this. Remember this.” But you don’t get to do that anymore, do you? How does that work?

Melissa: You don’t get to do that. In fact, at this facility that I was just talking about, once this discharge happened. I wanted to talk to the psychiatrist. I said, “Okay. This is the second admittance. This is what’s happened and it doesn’t sound like you have all of the information.” And I’m like, “I would love to– just like a five-minute conversation to make sure that you have the entire picture to give you history.” He wouldn’t even talk to me. When you’re dealing with a young adult, I personally didn’t want to take away all of his choices and make all of those choices for him, but I did feel I could at least make sure that the physician heard the story and had all the pieces to make a more informed decision. Now, moving into adulthood, (10:00) I would say it’s much harder because you’re hoping that your mentally ill child is now providing them with all of that information.

Tammy: But how can they do that when they’re in crisis themselves? It’s an expectation that seem so unfair that the system places on that person.

Melissa: Right. Right. Because of laws and things, common sense doesn’t often times trump some of those things. My kid is smart. He’s been in a PMIC twice. He’s been in an acute care setting at least a dozen times and so he knows what a psychiatrist wants to hear.

Tammy: Right.

Melissa: And he doesn’t always want to be there. He can use those words to just get discharged.

Tammy: Right. For those who don’t know in Iowa a PMIC is a Psychiatric Mental Institution for Children  – because in different states it goes by different names, like  residential long-term care.  – So he knows what would to say, he knows how to play the game.

Melissa: Right.

Tammy: Yeah.

Melissa: Yeah.

Tammy: What has worked in getting help for your child over the years? Is there something that was helpful, that would be good if there’s more of that? Is there something along the way that you thought was positive?

Melissa: I wish I had a lot of positive things to say today, I don’t.

Tammy: Yeah. That’s a reality sometimes.

Melissa: I just don’t.

Tammy: Yeah.

Melissa: I think — I think I’ve actually seen a decline in the quality of care in our state over the last ten years.

Tammy: It’s so discouraging.

Melissa: Yeah.  I think — When we had our first experience with the PMIC, that residential care for youth, the average stay was 10 to 15 months. Because of insurance and privatization of insurance and things like that, his (12:00) second stay was limited to I think six months. Even in month like two or three, they were trying to push your child out the door. A lot of kids could really use a higher quality of care, just a little longer period of time. In my son’s experience,  he was discharged quickly enough that he didn’t have time to test some of the medications, like an anti-psychotic that is pretty severe, and so they did that after discharge, because insurance tried to get him out the door. It just so happened that he had one of the life threatening reactions to the medication

Tammy: How frightening

Melissa: Yeah, he went into a cardiac arrest type of a deal. But that does not have to happen.

Tammy: No it doesn’t.

Melissa: That does not have to happen. He doesn’t have to have the means to commit suicide because they choose not to look at his health history.

Tammy: Right

Melissa: Right.

Tammy: And just to have the safe  place to do those med changes for this kind of severe case is imperative.

Melissa: Yeah,  I mean we are not talking about Tylenol here. These are some really, really serious medications.

Tammy: So we like to ask this because in our experience, in my experience, it changes moment to moment. In this moment, where are you – are you swimming, are your drowning, are you treading water? How are you feeling in this particular moment?

Melissa: I love that this is a question on here because I often times refer to this as like you are drowning. You know not all of the times you get to breath, but that is really kind of what it’s like. People are saying why (14:00) are you not advocating a little more, why aren’t you taking more time to do this or time to do that, and most people don’t know what is going on behind the scenes.

Tammy: Right, that it takes all that strength just to get that gasp of air before you go under again.

Melissa: Right, yeah, I can barely get up, put on my clothes, and I have two other younger children that I am trying to get out the door and smile for – just, you know – yay – it looks like Pollyanna – but I think that is a really good way of looking at it. There are a lot of parents out there – and this is really, really challenging –  and when we look at Public Schools, there are  a lot of things that could very easily be changed to help parents that feel this way. Yeah, that is why I would really like this episode to go out to all of you who do not have children with mental health issues to just give it a second thought on how it might feel to be in our shoes.

Tammy: Exactly. So what do you do to take care of you? What is your self-care routine? Because what I am hearing is  – and I can relate too – is that that it takes everything just to keep everything running, just to keep going. Is there something you can do to take care of you, or, and it may be more appropriate what is your survival technique – how do you keep breathing (laughter) because that is a big accomplishment?

Melissa: Yes it is! It totally is. We have dance parties some nights – we crank up the music – that’s exciting – with our younger kids. I like being outside, we do things like that. But the reality (16:00) of the situation is that there is not a lot of time for self-care, which I know that is the worst answer of all

Tammy: But it is a real one.

Melissa: Yeah.

Tammy: Yeah. As hard as all of this is, I bet there is at least one funny story that you have that makes you laugh a little bit. It is hard to think of one, but is there something that makes you smile when you think about “oh my gosh that was ridiculous!” – even if it is not funny but it is so ridiculous that it is s so surreal  – like “yes that happened”?

Melissa: Tammy, I am in such a bad place, I cannot think of anything funny.

Tammy: That’s ok. You don’t have to.

Melissa: Huh.

Tammy: If you can’t that’s ok too, because I think we need to hear that. We need to hear that it is not always ok – because when we are in that place – I know it’s hard  for me to turn on the radio or the TV and only hear stories about “Oh, they overcame this problem and it’s so great and they’re doing this” and that is all you hear. So when we are in that low spot, it feels like we are not allowed to be there. But so many of us are there, so often and we just keep it quiet. It is ok if you don’t have something to laugh at right now, that’s ok too.

Melissa: yeah

Tammy:  I don’t think you are going to be the only at this moment who is like, “I can’t think of anything.”

Melissa: Yeah, I don’t know. The last few weeks have been incredibly challenging for our family. If we had this interview a month and a half ago, maybe I could find something wonderful. But, the mental health crisis in this particular state – it’s bad. Like I said, in six months he has been admitted to an acute setting six times. (18:00) This last time was because he took one of our vehicles Facebook Live to suicide attempt by trying to go off the road, and had he not unbuckled his seat belt, he would have died. We did a committal and advocated for him to be in this acute care setting longer. They discharged him with another out-patient referral after six days – which has been what has happened for the last six months. That is a lot and it is very heavy. So I am not feeling overly hopeful.

Tammy: What gets me when I hear this story and so many others like it –  no matter what this would be horrendous to live through – but it just seems to make it so much worse when we know it doesn’t have to be this way in terms of help. There is a way to help this, to help people stay safe when they are in this place. No we don’t have a cure for severe depression that we can just wave a wand and make it go away, but we could as a society keep people safe and loved, and families loved and supported – instead of stigmatized – we could do that

Melissa: We could that.

Tammy: We could as a community put our arms around people going through this and hold them up

Melissa: Right

Tammy: I think that is what makes this more painful. Is it doesn’t have to be this way.

Melissa: It does not have to be this hard. No.

Tammy: It would be hard no matter what, but it doesn’t have to be this lonely, it does not have to be this much of a struggle (20:00) to just get people to listen.

Melissa: Right.

Tammy: I want to thank you for your courage for speaking today so people can listen and can hear about what it is really like, because I think we don’t’s say it publicly enough so people can hear. Because it is awful, but it doesn’t have to be this way.

Melissa: No, it does not. No. My only happiness would be, I guess if I can find a laughable moment, is if you can find a group of moms and get together once a month and tell your stories to each other because I think you need that – and you will come up with some doozies. That has been helpful.

Tammy: Support is so important. Just to have someone to be there with you, that, I think,  is so important.

Melissa: It is, but I have even seen in our small community where I know a couple of moms facing things similar to me and they don’t have anybody. Like you said we just need to put our arms around each other and it can get better.

Tammy: Thank you for being here today. I really appreciate you sharing your story with us. I really wish you and your child and your family all the warm, healthy wishes to make it through this difficult time so we can laugh together next time.

Melissa: We will laugh. Thank you.

Tammy: Thank you so much.

(music fades in)

Women Speaker: You have been listening to “Just Ask Mom”, copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English”, written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFrontline.com or subscribe to “Mothers on the Frontline” on Itunes, Adroid, Google Play, or (22:00) Stitcher.

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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.