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]

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.