Every Child Deserves a Miss Honey

As a child one of my favorite books was Roald Dahl’s Matilda.  Having dyscalculia, I related to how Matilda was often misunderstood and looked at as “odd” by her family and classmates.  Like Matilda my mind would also wander, I imagined myself on grand adventures, solving problems, being a hero to my friends and defending myself against class bullies. 

In second grade I took my first standardized test. I remember flying through the reading comprehension and writing sections on the first day but once we got to the math portion on the second day, I hit a wall, I was not able to complete the test past the second page.  When we got the results, the discrepancy between reading/comprehension and math reasoning was so large that they made me retake the test three times, and three times I produced the same result.  Not knowing what to do with me, I was placed in the back of the class – with reading material and given worksheets for math so that I could “follow along with the class at my own pace.” Without remediation for math the worksheets made no sense, but I quickly learned that my teachers (grades 2-4) would not bother me if I read quietly.  I didn’t want to do math and when anyone – teacher or my mom – tried to force me to do math problems, I would become angry and resistive. This behavior garnered me the reputation of being oppositional and lazy.

It was not until the 5th grade that I met my Miss Honey.  As accidental luck would have it the fifth-grade class for Indianapolis School #43 was exceptionally small, so small in fact that the school decided to combine 4/5th and 5/6th grade classes.  For a child with undiagnosed dyscalculia this could have been the beginning of the end (children with learning disabilities are three times more likely to drop out of school than those without learning disabilities).  Luckily for me I had a teacher who, for the first time in my elementary school years, saw me.  Mrs. S  noticed that, although I did not and could not perform basic math tasks such as simple addition, fractions, and telling time, I WAS reading books of all varieties, science, non-fictions, history, and lots of them.  In the two years between testing and entering 5th grade my reading and comprehension skills had only increased. It was not uncommon for me to raid my mother’s bookshelf and I frequently asked her to check adult books from the library so that I could read.  Like Matilda’s Miss Honey, my 5th grade teacher began talking to me during break times, we often had lunch together where we would talk, I also stayed after to school with her where she would tutor me – quietly and painfully in math. When she noticed that I could complete some math tasks if I used my fingers to count (which was forbidden for 5th graders) she devised a “safe” way for me to count using my fingers and the shapes of the numbers.  (Safe in that the math teacher would not see me counting with my fingers and give me an “F”.) She gave me extra time for test and arranged for me to take my standardized test in the library un-timed instead of with my classmates.  When the school wanted to move me to a separate behavioral school because I was falling behind and acting out, Mrs. S called my mother and helped her to complete the appropriate steps so that I could attend RTI (Response to Intervention) classes twice a week for math but remain at my home school. This was 1982 a full 8 years before the Americans with Disabilities Act came into effect, so there was no 504 or IEP, there were no guidelines for teaching and accommodating children with learning disabilities. To this day I have no idea how they managed, but Mrs. S– with the help of my mother – managed to come up with a set of accommodations that would see me through middle school, high school and college. Like Miss Honey from Matilida, my Miss Honey became my biggest champion at school, my best interpreter, and my most important guide.  She helped me understand my disability and then helped me find ways to incorporate that knowledge so that I could better navigate through school and through life. It helped me navigate through graduate school, to a Ph.D. and to my current job as a professor. Every child deserves a Miss Honey and we at Mothers on the Frontline would like to give a heartfelt “thank you” to all the Miss Honey’s working to improve the experience of our children at school.

Getting People to Listen, Just Ask Mom Episode 15

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

In this episode, we listen to Cheryl who overcame and found the new Cheryl.  This mother of three shares her powerful story of overcoming trauma and serious illness to advocate for her children with special needs. Please be advised that this episode contains discussion of sexual abuse and a suicide attempt.

Transcription

Voiceover: 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 hear from Cheryl who overcame and found the new Cheryl. Please be advised that this interview contains some content that may be disturbing or upsetting to some of our listeners. Also, this recording was done at the 2017 National Federation of Families for Children’s Mental Health Conference and there is background noise from another event taking place at the hotel. Please do not let the background noise distract you from Cheryl’s story.

Tammy: So hi, tell us a bit about yourself. Before outside of mothering, what are your passions your dreams?

Cheryl: I’m a mother of three and my youngest had the unique passions I should say because everybody thinks that everybody have a disability. Some of them you can see it and some of them you don’t.

Tammy: That’s right.

Cheryl: My passions are education awareness and I’m learning that I have more passions as I’m going through my journey and each journey is different. My favorite thing to do, I picked up sewing crocheting and learning how to relax.

Tammy: Yes. That is not so easy. Ironically it’s not so easy, right?

Cheryl: No, but it is and you would know why it’s not easy.

Tammy: That’s awesome. And so I want you to pretend that you’re just talking to just the general public is getting to hear what you have to say. What do you want them to know about your experience? What do you want them to understand?

Cheryl: I am a 45-year-old African American and my two kids, my two oldest are 25 and 21. So the way I raised them was totally different than when I raised my 15, soon to be 16. Each of my children they saw experience of me, but my sons saw the worst.

I was in an abusive relationship. I’m originally from Philadelphia but I went down south and I found out that all my life I was a caregiver and I didn’t know how I’m just it doesn’t mean nothing. I was taking care of me. I was taking care of my kids, I was taking care of my husband, taking care of my mom, my great aunt.

You know, anybody, its just everybody would come and say, “You know how to be a caregiver”. So in my bottom, in my journey, when I was going through my abusive situation with my husband I just said, “When I hit the bottom, time to go” I just up and I left thinking that my son will need counseling for me just up and left.

I said, “He’s going to need that because he was so young he don’t need nothing” I learned that he was– his unique gifts was coming out and I didn’t know what this is or anything and nobody wouldn’t tell me what it was.

And I have all these questions and answers and nobody. So, my mom always taught me if you don’t know do your own research. Don’t believe what other people say, do your own research.

Tammy: Right, good for her by the way. That is pretty awesome but go ahead.

Cheryl: Yes, so I started doing my own research. I didn’t know what IEP is. I didn’t know why they did all these tests and everything else. The first thing I had to do is stop blaming me, I guess. As a mother that’s the first thing we do is blame.

Tammy: Yes it is.

Cheryl: I was in a relationship. He beat on me because of that. I didn’t take all my medicine, all my vitamins and everything. As that went on I found out that it wasn’t. So I find out that I went to therapy. Don’t think I’m crazy or nothing but I start seeing my mom and my dad.

Now my mom and my dad died in 1994 and my dad died in 1981. This is now 2008 when I’m seeing and I’m actually– they are actually talking to me. People thought I was crazy and I’m like, “I’m not crazy. I’m actually seeing my mom and my dad” and I started seeing flashbacks of the things that I saw at the age of two, four at five.

I find out that my mom was abusive too and I started getting headaches so bad, it was a migraine, and I had all the signs of that. The doctors told me that it’s a brain tumor. I’m like, “I’m not claiming that. I’m not. My mom and my dad say it’s not. They did” I’m like, “But my mom and my dad say not, its not”.

And I was like, “Okay, you all don’t know nothing. I’ve got to go to another one” They said another thing. So one night I’m like, “God just give me, just give me the faith and the confidence that something is wrong”. My mom and my dad came and they was arguing. Like literally was arguing at each other.

But one on this side one isn’t and my mom said, “It’s migraine” and dad say, “It’s constant headache. Migraine … constant …” Why? I’m like, “What the hell is going on?”. And then they both turned around and said, “Go back to where you was in Philadelphia before you left to South Carolina”.

Tammy: When you were young?

Cheryl: Yes, before I left to go to– when I left Philadelphia I went to Thomas Jefferson and I came back and I was going to different high schools and everything else.

Tammy: Oh I see.

Cheryl: And they say, “Go back to where you–” you know, the doctors that you was before. They think I’m going to be crazy. I did and then I found it was like they use constant headaches now more. I’m like, “I’m telling you, check for clusters and migraine” they were like, “Well how–” I said, “Just please just do it. I don’t want to tell you how but do it”. And then I start getting flashbacks of my rape.

Tammy: Did you know, remember that or was it like the memory that resurfaced?

Cheryl: It was resurfaced and I blame my mom for it because that was the time in July that she passed and it happens I got raped twice the same day, a year apart by the same guy. And I’m always just blaming and the image and everything else.

So then I found out that I got PSTD and it’s like a certain man. I couldn’t go around and oh I smell and everything.

Tammy: So your body remembers this?

Cheryl: It was starting to remember and I was starting to read and I found out that some things are hereditary. I found out that the migraines and my dad had clusters, which I found out that men don’t have migraines, they have clusters. So I started doing my own research and stuff.

For me it was I get all the side effects of a  migraine. So, the dizziness, the passing out, and everything else. But I still didn’t understand why my dad was abusive. The rape was coming up and everything else.

Then it dawned on me, I was like, “Okay I did what I did. I did what I was supposed to, I called the cops. I did everything. Why he came back?” and I didn’t know and that was a burning question that I need. But in the process I let myself go and I have a child that don’t know nothing and I’m trying to figure out what it is.

I let myself go and my self-care, my self-worth, and everything else. And when I looked at my sisters and my other friends and family I thought, “I need help”. They said, “You strong. You don’t need no help”.

Tammy: It takes strength to ask for help.

Cheryl: And I’m slipping, I’m telling you I’m slipping, I’m slipping, I’m slipping, and its not where it is and I’m seeing every time I go to the hospital for two weeks to a month my child is not speaking and you not and I find out that when he’s at my sister’s or at whoever they were. To tell you the truth I didn’t know who. They say one thing and then I find out later on in life it was somebody else.

Tammy: I see.

Cheryl: So now you’re telling that he– you didn’t even want him. I had a doctor say, “Get your affairs in order” I’m like, “I’m not going down this way. I’m too young”. You know what I’m saying?  Then more research and then I find out they were giving me at that time, in 2010, they gave me– I was on 20 medicines.

Tammy: 20?

Cheryl: 20.

Tammy: Oh my gosh.

Cheryl: And a patch. I was on Fentanyl, I took it three days and I said, “No. I’m sleeping. How can I take care of a child?” and then I find I start doing my own research and what medicine worked with this and I got so bad that my child don’t even want to take his medicine because of the journey that he saw me with.

And I said, “I had to get better because of him” and if I can’t do it nothing else I had to do it for my three kids and it was a journey and nobody wouldn’t help. None of my family would not help. They used to say, “Oh you got it. You don’t need me. You’ve got this. You’re strong”.

I’m telling you I’m screaming. I’m telling you I need help. No one. All they wanted was money because that’s I wasn’t given. When they called me and they like, “Do you have? Do you have? I need, I need. Can you watch? Can you do?” and I came with it, but now it’s my turn to lean with you.

I’m not asking you to lean on for a minute. You know a minute, not a long time. I just need strength. He won’t do it and I lost everything in that process. I lost my house. We went into a shelter, I lost everything. My son saw me at my worst and he was mad at me.

Tammy: How old was he then?

Cheryl: At that time he was, I would say around about eight and nine when we went into a shelter.

Tammy: How heartbreaking.

Cheryl: He actually saw that my sister took it right under me and everything. Why would you do that? So me and my son went to– its called Ocean Avon Cherry. He is supposed to be going to school but state policy is from six thirty till five they come here and see if I can find a house, I mean find a place. For four days, four.

I had my bags, my ID, and him. They said they could not find nothing. I said, “I can’t do this no more. He has to go to school or they will come to me for truancy. He had to go to school. I can’t keep on figuring out if today is the day or tomorrow and you want me to wait from eight thirty till five, I can’t”.

We slept in 69th Street terminal for one night. I was like, “I can’t do this. Just give me strength”. Wherever I’m walking I’ll just walk. I went to the library, I had a pamphlet and they said they had organizations. I just start calling and nobody didn’t have no places up there.

So Salvation Armies called and said– I talked to them and they said, “Pott’s Town” I’ve never heard of it. I said, “I know about Norris Town, but Pott’s Town, I don’t know about Pott’s Town” and they say, “Well I can meet you.” So the nuns came and got me and my son and I stayed in Pott’s Town for like three months.

And they got me into disability. I was lucky that Tommy Jefferson they was calling, my doctors was calling me making sure do you need a ride? Just meet me at 69th Street and a van will come and pick you up because out of [inaudible]. They did that.

They did all the testings all over again. Now I know why I was sick, you know, saying they work on my disability. I’d be an outpatient. I said, “Now I’ve got myself together” and when they told me that I had brain tissues or whatever. Not the way I needed my fear, I said, “I’d rather just take some pills”.

Me dummy, I called a dummy move. I had Percocet and I had muscle relaxant. God forbid, God knew I had an angel on me because I took a whole bunch of muscle relaxant. So, my body would just relax and everything else. It wasn’t time for me to go. That is how I see it. It wasn’t time for me to go.

But how can you– I thought that everybody is telling me that I’m going to die anyway so I might as well do it the way I want to do it, in my sleep. No pain no nothing.

Tammy: But luckily that wasn’t that night.

Cheryl: It was not and then I looked up and I saw my eight year old like, “If you leave where am I going to go?”.

Tammy: Of course, he needs you.

Cheryl: And at that time his father was in and out of jail and I looked at him like, “I don’t have nobody don’t want you”. I sat my kid down and I was like, “I don’t know what it is but whatever you do you are all old enough and you have all got different fathers, but stay together”.

Because I said, “He’s going to go back down where his father lives at and his father’s people is going to stay with him because I already called his father people. I say, “Whatever you do if anything happens to take care of my son. Don’t let my family be around except his sisters”.

Tammy: What would you like people to understand about this experience? What is sort of the thing that you think if they knew it might make a difference?

Cheryl: I found out that when I was going with on one journey and thinking well one for my son, I had to look at the whole picture and I had to do some soul searching and I said, “I need help too” So just because one person the youth isn’t– my son is, you know, need medical attention and stuff like that.

I found out in my journey that I need it and it’s alright to say, “I need help”.

Tammy: Yes, it is.

Cheryl: And I understand since I didn’t have nobody, you know, I mean I had one person that I refused to use her because she was older, she was my grandma. She’s older and she would do anything but I was raised that you older so it’s my job to take care of you.

You know saying, “You over 70 years old. It’s my job to take care of you” that’s how I was raised. So the only thing you can give me is support. So, I had to, with my migraines, I had to learn how to decrease the stress and everything else. But I don’t have all this money.

So I had to go back to research and say, “What can I do with when that calls?”  I picked up back what did I like to do when I was little? So I picked up sewing, I picked up crocheting and that’s what relaxing.

I find out that lavender is, you know, so I had lavender. You know what I’m saying. Soap costs a dollar, just saying lavenders little thing. I burn it up. You know anything pink. Lavender flowers. So when I go into my bathroom all you see is lavender and the smell.

I found out I love water, so I made an appointment that every, you know, certain days, I take a deep bath, just relax.

Tammy: Right. So, ways to take care of yourself.

Cheryl: And I do and I get up a little earlier, you know if I had to meditate. I don’t know what other peoples religion or faith is but I just take time for Cheryl and get to know who Cheryl is all over again because you don’t know. You in a different stage and you know, and each stage you form, you are like a butterfly.

First, you are in a cocoon and you got to sit there for a little while and at the end, you are a butterfly that you are in stasis and each stasis is different.

Tammy: So, when you think about trying to get help for your child because you have this whole journey, right?

Cheryl: Mmm hmm.

Tammy: And a big part of that, and thank you for sharing, is getting yourself the help you needed so you could help your child. Once you had that and you’re trying to help your child what is the thing that was the most challenging for helping your child?

Cheryl: People listening. I’m telling them something is wrong. I don’t know what it is. I couldn’t pinpoint and they kept on asking me the same questions. All I wanted to do is … it’s something. They always want to like– they were like, “Oh he’s– something is wrong”.

They want to put him in a slow class and I said, “I know my son is not, you know, special ed. He knows how to write, he is bright. Something else is missing, I just can’t pinpoint his anger, the way he just bursts out with behavior. That is like this is not him”.

I went to the doctors, I went to anything that I can think of I went. Nobody wouldn’t do it and then– or for him to get the help. Finally, he had to be in some kind of system and one day he was mad about something, his dad didn’t call or something, and he used a pencil and he stabbed himself in the school.

So they were like I had to 302 him. What is 302? I think he need help or for him to get into the system that’s when I found out at all this other stuff. Why do I got to wait all this time? I’m telling you for five years that he need help but nobody was not listening.

Tammy: No one would listen.

Cheryl: Nobody and the school were labeling him as a problems child.

Tammy: As opposed to a child with a problem.

Cheryl: And then when I went through this journey and everything else, I found out that he was traumatized. When you first hear trauma its always the sexual abuse or neglect, but for him, like I said, for him that was trauma because I left. I just up and left. Something that he has known for seven years.

And I just said, “Come on let’s go” and we left. So for him to be a child that was trauma. I’m not even talking about what he saw, you know, I think he never saw me get beat up. But that right there was trauma to him.

Tammy: Absolutely.

Cheryl: And he held it and now he can’t see or he can’t touch, he can’t talk to his father, and they had a close relationship. That the trauma of each thing is different. So told him that it was trauma and he goes, “I know because it’s not sexual, it’s not a bruise” It is. It is trauma.

Tammy: Yes absolutely.

Cheryl: Even though it wasn’t like for a five-year-old or a six-year-old or anything that’s trauma. It wasn’t forced, he didn’t like force and I didn’t know, but that’s trauma, and you all did not listen to me when I told you there was a problem.

Tammy: So, in helping your son, I like this question because I like to hear something positive because it’s always so tough, but is there anything that went right? In getting your son help is there one thing that just like, “Well I’m so glad that happened” that helped?

Cheryl: I learnt how to communicate in a different form.

Tammy: How so?

Cheryl: I realized that every culture is different and everything else, but for me being an African American we were taught the fifties to sixties and the seventies, even in the eighties it was to say, “Yelling and screaming” and everything else.

But this generation here is totally different. You know what I’m saying? So, just because, you know what I’m saying, five people are doing the same thing, this group is not, but we trying to force the old system, I should say, to this new– the punchbag. It’s not working.

So, it’s our right to change and I guess the system is not ready to change.

Tammy: It takes some doing to get the system to move, doesn’t it?

Cheryl: And as soon as the system change we going to be already working on something. Another problem is how is the system actually looking down. But for me and my son I had to learn his language. I’m like, “Well wait a minute when I was his age my mom didn’t understand me. I was a teenager”. You know what I’m saying?

So, I’m trying to remember what she did and tweak it and put my little recipe in it and everything else. So after I doing date night. One to one. Whatever you want to do you do whatever you want to do, but the next month its what I want to do and I’ll always want to predict education is something what I do.

Because like I said education was part of it and I was a stutterer. I couldn’t, you know, talk proper and everything else. So I was like, “Alright so when he gets mad write me an essay on what happened” because he couldn’t put everything– when he gets upset or his speech wasn’t– I was missing something.

Okay, write it down in an essay form and tell me what did you do, how you do it and do you need to have a consequence because every action is, you know, bad or good, is what you’re supposed to do.

Tammy: Did that help?

Cheryl: That did and then I start changing my form. Instead of saying, “How was your day? What was the best day, you know, for the day? What was the worst day?” you know? Then I find out that he was teaching but he didn’t like the class and I was asking him why.

And he said, “Because it’s fifth, sixth and seventh graders, I’m in the seventh grade. We in the same class. Okay sometimes you got to read through the lines and everything else and I’m learning how to. I’m still learning.

Tammy: Oh sure, we all are.

Cheryl: And sometimes as a mother you just want to go in but then now when I go to the IEP meetings I say, “This is for you” you know so now we have family meetings too but I said, This meeting is for you. What do you want me to know about this? I cannot talk to you no more. I’ve been talking for you for the longest. You old enough and capable to do the work and then they need to hear it from you”.

“If you don’t want to take the medicine. You don’t want this, you want this. Let them know. Because at the end of the day I’m not going to be here all the time” and I let him do it and he learning his voice.

Tammy: So we ask this all the time when we do this. It changes from moment to moment but at this moment right now are you swimming, are you drowning, are you treading water? Where do you find yourself?

[Laughter]

Cheryl: This moment I am swimming.

Tammy: That’s wonderful.

Cheryl: Not fast.

Tammy: Sure. Not in the fast lane but-

Cheryl: I’m not in the fast lane and stuff like that and everything. As a matter of fact, I’m doggy paddling. You know what I’m saying. I’m not actually doing strokes and stuff. I am doggy paddling and I’m happy. I am happy where I’m at because if you literally saw anything in 2009 and everything else.

I couldn’t walk, I was on a walker and all this stuff, but and you’re actually even seeing my son not talking, not doing nothing. Yes he still gets his triggers but now I know if he starts being quiet I’m more alert and I want the parents to be more alert just because they don’t– if they just say fine why is this fine?

Go deeper. Ask those tough questions because you never know where you are going to go to.

Tammy: I think that is really good advise especially with teenagers. I had two teenage boys so I really appreciate the work it takes to get the stories out of them, right? So, we also like to ask this. What is your self-care routine or if more appropriate survival techniques? So, so you told us some like the crocheting and knitting, what do you do to take care of you?

Cheryl: I went back to the beginning and I always tell– you always say, “I’m never going to do what my mom do” that is the worst thing ever and everything. But with me had a speech problem my mom couldn’t buy nothing. She made me read out loud. She made me do things that I’m thinking was just like so crazy or anything like that.Those gifts started coming back to me and everything else and she made me journal because she said-

Tammy: I like your mom. I’m sorry, I just had to tell you.

Cheryl: She was very educated and everything else and she said, “If you cannot speak it you are going to spell it” because I was very like [gibberish] so she made me journal every single day.

Tammy: And that helped you?

Cheryl: So once in a while, I don’t do it every day, but when things is really like really mad, I’m really mad about something and I can’t express it to Leon or express it to none of my kids or anything, I write a letter.

Dear, you know, Doctor such and such, and I just let it out. Then after that, I read it out loud and then I burn it and rip it because now it’s out of my system. If I have ideas I start writing and now I’ve got four or five copy books of my journey of ideas that I want to do, programs that I want to start. Because if I have an idea, I always have a pen and a paper with me because I never know-

Tammy: There you go, exactly when it’s going to come, right?

Cheryl: I never know whenever it comes. So, I always have a pen and a paper and jot it down. Then I started thinking I was doing something for my son. Little quotes saying of it and I just have little quotes. Some are with Maya Angelou, just somebody just unknown. I thought I will put it in the bathroom.

Everybody has at least got to stay there for a long time and they going to have to read. I put them on the wall and its to decorate one wall is just full of quotes, piles of quotes and everything.

And now I do that daily in my office and anywhere and I change them up. I even now do vision boards. Everybody has to do a vision board and then every three months you have to take it off if you have done it and put something back on it. If you take something off you got to put something back on it.

Tammy: That is a nice idea.

Cheryl: Because I believe now with my son they more visual, a visual learner. So, if you see it and you speak it and I had a little complex because of my skin and everything. You’re not going, you ugly and you know what I’m saying and everything.

Tammy: You’re beautiful.

Cheryl: You know what I’m saying? I had bad acne and eczema and everything else. But my mom always made me and my god mom, thank god for my god mom, she always say, “You” she whispers chocolate girl and she played that every morning and every night before I go to bed and she said that you are beautiful you are smart you are kind you are humble.

And I had to say, “I love myself” 25 times in a mirror and during that process, I found out that some days you don’t love yourself, but once you keep on saying it it’s like practicing. Once you keep on saying it, you are going to start believing it. Once you start seeing it you are going to start believing it.

I had to cope with it in every little thing I did and I had to cope with it with Leon because he didn’t believe it so he didn’t do it. So, once you start a knowledge and start being aware of what you’re doing because sometimes as a parent, I know I did, I did stuff that I’m like, “I can do that”.

So, I had to check myself every now and then but like okay. But once they start seeing you being a role model, if you are, eventually it’s like everything that your mom did you know you didn’t like it but a couple of things you remember and you brought it to your– where you at with your kid.

You know what I’m saying? You didn’t understand it at the time with why she’s doing that but thinking that’s where our parent skills comes at.

Tammy: That’s right, that’s correct. That’s true. All of a sudden they get so smart our parents, right? As we get older.

Cheryl: Yes I’m like I don’t understand either.

Tammy: So, here is a question we like to end on. Through all of this whats your most laughable moment? What do you remember that makes you smile or it makes you laugh?

Cheryl: So many. Well for me or through my journey with Leon?

Tammy: For you, just what makes you laugh. Well as a mom.

Cheryl: As a mom.

Tammy: And that’s easy right because the kids make us laugh all the time.

Cheryl: We was a musical– my mom was musical so we did, my mom, you know, I learned the fifties the sixties the seventies and I learned classical. Just listened to the sounds of old and everything else and when I get a chance to have all my kids together or just one to one we will listen to old songs.

And I could say, “Well who was that?” and they will say, “You know, such and such”. So one of my daughters  we went to church and she saw Shirley Murdoch and she said, (sings) “As we let the night away” and one of the girls that was younger she said, “You were singing Catty Price” and my daughter was like, “No she’s the original”.

[Laughter]

And she started laughing. She said, “That’s right” she said, “I know” all my kids know music from different areas and everything. They can just hear just the start of it and they’ll be like, “That’s it” and they will be arguing.

We tried to get my son, he was like, “That’s the soundtrack of some movie” he said, “Well who is it?” he said, “That’s from a movie” well who it is? So he’s still learning and everything else but that’s like the best. You know what I’m saying?

That’s the best and I’m bringing back family time. No tv, no phone, and for an hour we will do family. I bring him go to the thrift store parent and get those little Life– I got Family Feud, we all have the buzzer of just go like this and that is how you start.

Sometimes we have to go back to go forward.

Tammy: That is great advice. I’d like to end on that. Sometimes we have to go back to go forward, I think that is great. Thank you so much for sharing with us.

Cheryl: No problem.

Tammy: Thank you.

Female speaker 1: You have been listening to Just Ask Mom. Copy writed in 2018 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is Old English, written and performed and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health go to mothersonthefrontline.com or subscribe to Mothers of the Frontline on iTunes Android Google Play or Stitcher.

[End]

 

 

Raising Children with Both Visible and Invisible Disabilities, Ask the Advocate Episode 3

In this episode, we listen to an advocate with MomBiz Boss and a mother of children who experience developmental and mental health challenges. She speaks about being a mother of color and the experiences of raising children with both visible and invisible disabilities.

Advocacy organizations discussed in the Podcast:

National Federation of Families for Children’s Mental Health – A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. https://www.ffcmh.org/

Younger Years and Beyond – A local chapter of National Federation of Families for Children’s Mental Health that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. https://www.facebook.com/theyoungeryearsandbeyond/

Zaria’s Song – We Provide Support & Resources to Parents and Caregivers with Children Experiencing Physical, Cognitive, Behavioral and Mental Health Challenge http://ateducational.wixsite.com/zariassong

 

Transcription

[music background]

Women’s Voice: Welcome to “Ask the Advocate” where mental health advocates share their journeys to advocacy and what it has meant for their lives. “Ask the Advocate” is a Mothers on the Frontline production. Today, we will hear from Shanta, a mother of three, a clinician, and an advocate. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando, Florida. During this recording, you can hear noise in the background from another event in the hotel. Please don’t let these noises distract you from Shanta’s story.

Dionne: Hello. Thank you very much for agreeing to do this. Would you like to introduce yourself?

Teresa: Sure. Thank you very much for having me. I’m Teresa Wright Johnson, and I will say that I’m a mother first and then an advocate. I believe motherhood is very challenging as a business, so I’m kind of known as an advocate and a MOMBiz Boss, and we’ll talk about that later. But I’m a mom of children that were born with developmental challenges as well as physical challenges and children that have mental health challenges, learning disabilities, and more. And I advocate for them.

Dionne: And you advocate for them. So Teresa, tell us a little bit about your advocacy journey.

Teresa: So my journey began– I’m the mother of four children. I bore four children. Unfortunately– but still, fortunately, have one living child. So I had several children that died very early on when they were born. And then my other two children were also preemies. In coming– you know this is November. This is National Pre-maturity Birth Month– Awareness Month. A lot of people don’t know that. And with premature children, sometimes you have greater risk factors. And some of the risk factors that happened and that were indicated with my first child who was Zaria– and I have do so much for Zaria in her name. She was born with various disabilities, more physical and cognitive. She had cerebral palsy as well as metabolic disorders like mitochondrial syndrome. She also had seizures, low-birth weight, feeding issues, mobility issues, just so many different issues. But guess what? That did not sway me. I wanted to be a mother. And once I found out I was going to be a mother to Zaria, I started to getting training at the hospital–

Dionne: Oh, wow,

Teresa: — so that I could be the best advocate for her. So over the years with Zaria, I started my own support group for mothers of color called Special Treasures, because I feel that our children are not just special-needs children. They are special treasures. They are treasures that open us up, expand us, push us way beyond our comfort zones, and stuff. And so I did that with Zaria. Zaria, unfortunately, passed away.

Dionne: I’m sorry.

Teresa: She had a seizure at school and passed away some years ago. However, the journey of her from birth to seven years old has got me to help hundreds of thousands of women and families to different organizations: speaking, training, coaching, learning, and advocating. And I would have never done that without that journey of Zaria. So, Zaria had all those special needs. And she also opened me up to stuff that I never knew of. I knew about special needs a little bit because my Mom when I was little worked in group homes. And I didn’t even know that was a group home I was going to because back in the day, I ended up having a single-Mom that was divorced. You could go about with your Mom. But that compassion that was instilled to me as a child, it really helped me with my child with special needs. Then the special needs group and different organizations– I’ve worked with Mocha Moms, which is a national organization for women of color that put their children and their families first with children with special needs. That was my goal when I was doing things for there. But then, Zaria had a little sister named Jade that was born. And Jade was a few years younger. But when Jade was born, again, she was another premature birth. So, I have to be on bed rest, all these different things to have children. And when Jade was born, she was typical. She was just a low-weight, birth-weight baby. But then, as she started getting older, she wasn’t crawling. She took a long time to walk. I learned about a lot of different things with Zaria that helped me with Jade. And so Jade ended up being very physically functioning. But emotionally, she was the baby that never stopped crying that I took to the hospital, and she didn’t have colic. She was the baby when I would leave with people – her godmother or whatever – they would say, “Um, call me. She’s still crying.” “Ah, okay.” She was the baby banging her crib up against the wall. Not just crying to get out. She was banging it. So, this led me from the journey with Zaria ended up getting all these certifications for special needs– being a Special Needs Trainor for the Department of Development and Disabilities or Babies Can’t Wait, The Early Intervention for Georgia for Zaria. But then, transitioning to Jade was solely different, because she didn’t have developmental disabilities. I wasn’t working with IEPs anymore. That’s when I learned about the 504 Plans and all that stuff. So, me getting educated to help my children, starting off with Zaria, helped me to educate other people, but they helped me even more for Jade. And so now I have Jade, and she doesn’t mind. Jade says– you know what I can always say is that Jade experiences ADHD and some behavioral challenges but highly functioning. Has been placed in AP classes, a very smart girl. But if I wouldn’t never had the experience of Zaria and all these training and support that we get from other mothers and organizations we just don’t know, I would never know how to function or help Jade. And that’s why I’m here today at the National Federation of Families for Children’s Mental Health Yearly Conference is because of Jade. She’s my ‘why’ for this. And so I’ve been able to advocate now for parents that have children with dual-diagnosis whether it’s developmentally or mental health. I definitely don’t want to be a therapist or anything of that nature. But I have so much training that I know that God, and whomever you want to call it, gave it to me to help my children and other people. And I just can’t imagine not sharing that. And I can’t imagine parents not understanding, once they learned how to advocate for their children, they are their child’s number one advocate, because nobody’s going to advocate for your baby – that part of you, like you.

Dionne: Yes. So as a Mom advocate, what would you say if you had to talk to– and you can fill in this blank with whoever you were addressing one group– and I know you’ve addressed a lot of groups. What would you want them to know about your experience as a mother of children with mental health challenges?

Teresa: Wow, so many things you want them to know. The one is that Mom– that guilt you might have, the, “So why is my child like this?” Or, “How are people going to look at my child,” and all those things. I want them to know that find the treasure in your child, because those hard days when– maybe you have a child that experiences some behaviors or disabilities and is a little bit slower, if you can have that treasure kind of in your head, those days when they don’t seem like a treasure [laughter], when they don’t seem like a treasure, you have something to refer back to because even though it may be hard the way that you have to deal with them, how they deal with you, as society looks at them, they’re your gift. And you have to find the gift that they are for you and the treasure in them.

Dionne: You talked about this because– and the days that they seem like that you are just questioning the universe. Can you tell us about one of those days? And then–

Teresa: Oh, I definitely can.

Dionne: — what and how you worked through?

Teresa: I definitely can. One, I worked through it because I have a great support system. I engaged with other mothers that may experience some of the same things, so that I have someone to vent to one that understands me. Learned that very early on with Zaria. When my friends with typical two-year-olds would talk to me about their two-year old but my two-year old Zaria was really still at three, four months, they couldn’t understand. So, go seek out those supports that are particularly going to be able to support you. So, even with Mocha Moms, it was not a special needs thing. But it was for a stay-at-home moms at that time, at one point for Black mothers. That is who I am. So, I’m going to go seek them out. So with the child that is especially– in a particular experience, one of my children is very– the emotional part is very hard. Sometimes, she has so many things going on that it is overwhelming for me. I was just sitting in a train and then I was sounding– though I’m trained to be– a Mental Health instructor, a Certified Panic Peer Specialist, a Suicide Prevention Gatekeeper, all that, when it’s my baby, it’s a total different thing. I remember those formats. I remember those structures. I remember those systems. But it’s not the same. So, you got to make sure you have support because there are days when I have to walk away sometimes crying from my child. I mean she hadn’t anything to me physically. But my heart is hurt because you see what they’re going through. And they might not even be able to see it. And you know the treasure you have. But right now, it looks more like the garbage truck. And I would say the amount of support you have is very important. And just being real. And remembering where is that sacred space, that treasure, where you have to think back about it, because sometimes you want to just throw in the towel, because we don’t show motherhood being difficult. We show motherhood with this pretty baby and the little kids outside playing. And when you have a child with a need, you have fewer days of that and more days of questioning, “Why me? Why my child?”

So I think to have that support system, to be able to vent with other women that understand or can listen to you, groups that understand you, and the same for your child is important. So my number one piece would be have a support system. Have somewhere you can go. And then of course remembering that treasure because even though it’s H-E Double Hockey Sticks or whatever you call it [laughter], we have to figure out a way to go back to the gift in it, because it’s so very hard especially with the mental health versus the developmental disability. Especially in certain cultures, being a mother of color myself when I had my daughter with cerebral palsy, it was easier for people to see, because she could walk sometimes. She can do stuff. But when they see my child over here having a meltdown, “You better get that baby get a beating. Get her shit. Got no manners,” or whatever. That invisible disability is so hard. So everything– I know all women can do it. But when you have a child with a need, sometimes you got to put on a tough skin, because people say things. So that support, that treasure, and that tough skin altogether.

Dionne: That brings up a good and important point because especially as mothers of color, so many of us, we are experiencing not just our own internal, what I call your internal voice. But then, you literally have the external voice telling you what you should be doing, what you should know. How do you advocate for yourself as a mother because you’re Fearless Mom advocate. I know you’re a fearless mom. How do you advocate for yourself?

Teresa: For taking care of myself?

Dionne: Yes, taking care– it could be taking care of yourself or standing up for you.

Teresa: Again, one, you have to make– write down your own rules. Who and what do you stand for? What’s important for you because I’m Teresa. I might not look like the other Teresa down the road that’s an African-American woman. What are my values? What’s important to me? And what’s important to me is that I live up to who I authentically am and who my family is. That’s one. And then, two, being able to really sit and think about what really is important, what’s not. You know the picture? Because we’re women. I don’t care what color you are. A lot of us fall into this picture thing. And guess what? How much do I really care about that picture or what it– I care more about reality and being happy. So that’s one. But as a fearless advocate, I really try to think about major– I don’t really care what anybody else thinks, because I know what’s going on inside of my house and inside of my mind and what I have to take care of. Like being here at the Federation of Families for Children’s Mental Health Event. A lot of people– they don’t understand that. But I don’t care. It’s about my need. So have put on that tough skin again the way that I, the Fearless advocate, that takes care of me as I think of myself. I put on a tough skin. I do take care of myself, self-care. One of the presentations I speak about sometimes is life beyond advocacy, because at some point you can’t just advocate for your child and do everything for your child as you want to sit over here, and you’re going to have a breakdown or something, too. So that tough skin and not worrying about what others think. And taking care of you and your family. But remembering yourself, too, because so many mothers forget about themselves.

Dionne: What’s your self-care pleasure?

Teresa: My self-care pleasure is– oh, I have so many [laughter] because I love that stuff. But my self-care pleasure really is just quiet space because I’m talker. And I’m always with people. So if I can go on a trip and be away or if I can go– I just recently started doing yoga and meditation. And that has been great, wonderful a way to do it. You might not have funds or something to do things or time– a quick hot shower with some music. And I think really music is one of my main things and ways of self-care, because you can get whatever mode you want. Dancing. I think we think about self-care as if it has to be the spa all the time. And it doesn’t. Or it has to be all these extra things. Just little things to take care of our self because to be able follow these advocacy and these children that experience various needs, they experience those. That’s not who they are. And that’s why I say remember that treasure. Remember who it is. As a matter of fact, my daughter’s name is Jade for a reason, because she’s a treasure. Let me remember. She’s a treasure [laughter]. So–

Dionne: I like that.

Teresa: So you have to figure it out.

Dionne: So I have two last questions. And then I want you to tell us a little bit about your organization and the shout out for your organization, where we can reach you, and everything. What’s your most laughable moment? Because a lot of these, for me, one of my self-care pleasures is just being able to sit back. And sometimes just laugh at what’s going on. What’s your most laughable moment?

Teresa: When your child that experiences a mental health challenge or behavioral challenges calls you on stuff, that’s the most laughable moment. They have to tell you to slow down or tell you to do something. And you hear them repeat back how you talk to them or deal with them. That is the most laughable moment, because I do really want to tell them, “No.” But really guess what, they got this somebody from somebody. And it might not be that you have a mental health diagnosis. But some of the stuff that we complain about our children or concerned about they are mirroring our personalities. And so that for me is the most laughable moment. So for me, I’m always moving and shaking. And my daughter, she’s a mover and shaker. But she’s a little slower. You have to prompt her like I do this or that. But she has to tell me, “Mommy, you need to slow down.” Surprised yesterday at the conference she said, “I’m surprised you didn’t lose your cellphone yet [laughter].” So that was like, “Oh, okay.” I said, “Oh, okay. Well, you know when I’m not with you…” because this is our first conference she’s been to as an attendee where she’s engaging by herself. So I said, “Well, Mommy try this all the time. I have my phone all the time.” She said, “Well, I’m surprised [laughter].”

Dionne: She’s little part of you.

Teresa: Yes, she’s watch me, because she see me put things down and do different things. So that’s my most laughable moment.

Dionne She’s just seeing you. reflecting you back at [laughter].

Teresa: Which is really good because that not caring what people think has been a little bit better for her with dealing with some of her challenges. But she’s learned that from me.

Dionne: Oh, that’s good. That’s important. That’s important. So is there one particular organization, group that you want to do a shout out, you want to talk about right now?

Teresa: So, since I’m at the Federation of Families for Children’s Mental Health Conference, I’m going to talk about my organization. It’s Younger Years and Beyond. We are a local chapter of the Federation of Families for Children’s Mental Health. You will find us on Facebook right now. And just type in The Younger Years and Beyond or Younger Years and Beyond. And we are a local chapter that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. I started this chapter when Jade was four or five years old when I realized something was going on. And I wanted it to grow with her. And that’s why it’s called The Younger Years and Beyond. We offer support, free and sliding fee scale, because we’re a family-ran organization. We have a fiscal agent, so we do have a non-profit status that we’re under right now. And we provide services for IEPs, 504 Plans. But most of our training to parents as well. So I’m a former trainer for several organizations in Georgia as well as a university for parents with children with special needs as well as some of my Board Members, meaning my Board Members also are very, very strong mental health professionals and staff. So we just do very– what we can. But we mostly have a lot of events. We are a family-ran organization meaning we are family funded and take grants here and there. We’re trying to decide one, going after more. But pretty much we have three events each year. One is a Mental Health Awareness event for children. Then we have a business one like Connecting Organizations. And then this year, we’re going to have a Virtual Mental Health Awareness event for children and families. So we’re going to have a family track, and we’re going to have a children’s track. And I’ve actually been at this conference, and I have booked like two or three ladies–

Dionne: Oh, good.

Teresa: — to already speak. So we definitely are going to talk your agency about all that you do, because we know we are about the motherhood thing here. So that’s we do. You’ll find us on Facebook, The Younger Years and Beyond. And if you can’t find us there, you can always look to Zaria’s Song, and that’s Z-A-R-I-A-S-S-O-N-G like Zaria’s Song because Zaria’s Song and The Younger Years and Beyond are kind of connected because development disabilities and mental health, because the money is separated. People always separate it, but you need you have to do diagnosis.

Dionne: We call it the pathway.

Teresa: Right.

Dionne: There’s many pathways, and a lot of them go through mental health or lead to. We will be sure to provide links to both of those. Or in our sites we have a resource link, and we also– once we put up your podcast, we will provide links. So anybody who listens to this can link. One more? Go ahead. One more.

Teresa: The one other thing that I wanted to say is we also offer training for Mental Health First Aid. We are mental health– I’m a certified Mental Health National First Aid Instructor. And we are adding on. We do it for adults right now. But we are adding on the Children Mental Health First Aid. And we know where our community and our society and our world is right now. So very important that we get that information out there to communities, families, organizations, schools, etc.

Dionne: That is very true. Mental Health First Aid. We can use that training everywhere: teachers, coaches, other parents. Well, thank you very much. I mean this has been a pleasure. This has been– and I hope to continue to talk to you, and work with you in the future. So–

Teresa: I’m so excited.

Dionne: — thanks for joining us.

Teresa: Thank you for the opportunity. I’m so excited. I love your dream. You all can see what she’s dreamed out all for mental health awareness. Thank you so much.

Dionne: Thank you. Thank you.

[music]

Narrator: You have been listening to Ask the Advocate. Copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith. The music is Old English, written, performed, and recorded by Flame Emoji. For more podcasts in this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe on iTunes, Android, Google Play, or Stitcher.

[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.

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.