Navigating The System: Big Mistakes & New Perspectives
Parent Stories of Struggles, Successes & Set Backs
About This Book
"When my son was 11, I remember standing behind him when he was trying to do his math homework that was way past due. He had told us it was done, and it wasn't done. I was standing behind him while he was sitting at the computer trying to do the homework. There were eight problems that he had to get through, and it was just eight problems.
It could be done in 15 minutes if he just powered through it. But he couldn't make himself do it, and so I was reduced to standing behind him saying, "Now do this one. What's this one?" And he did it, and then, "All right, that one's done. Now go on to the next one!" He was crying and I was shouting, it was the most toxic thing you can possibly imagine. I didn't like myself, and I didn't think that I would be the kind of parent that a kid would want to remember when they looked back on their childhood."
This book contains stories from parents of kids with Asperger's & Autism that delve deep into the struggles, successes & set backs of their family as they attempt to navigate the system while raising someone on the spectrum. Within these pages, you'll find advice, inspiration, hope and perspective as you read the stories of other spectrum families going through similar struggles.
We've collected these stories because, while there is a ton of books out there telling you what to do (or more accurately, usually they're telling you what you are doing wrong), there are very few books that simple share the stories and perspectives of other families. It's our hope that this book helps you to realize that we are truly all in this together, and you aren't nearly as alone as it may seem.
About Asperger Experts
"What they did to my son was they stuck him in a little, tiny instrument closet, literally the size of my child and he was in there for two hours. This is an illegal time out room. He was told he couldn't come out until he did the assignment, which means he had to write. Of course, my son could not write because he has dysgraphia, so they would not let him out of the room. This went on for two hours.Now, I knew nothing of this. At the end of the day I got a phone call, and it was the principal saying, we're suspending your son. This was the first day of fourth grade."
My name is Sarah, I have a 23 year old and a 15 year old. My 15 year old was diagnosed with ASD and in the beginning, we were pretty desperate. It got really bad. We're talking about near-hospitalization, therapeutic schools, lots of trauma. Day to day life was just nearly impossible.
When my daughter was 11,. It was really bad. There were lots of meltdowns and frustration and I was in a constant state of anxiety. It didn't feel like anxiety. It felt like anger and frustration and desperation. But I didn't realize that it was my anxieties that were fueling my inability to see it for what it was.
I wasn't understanding, and neither were the therapists or the people who were trying to help. We are in a district where our school is fantastic. They tried so hard to help. I mean, I was a pretty strong personality. I came into the IEP saying, "This is what I want and this is how it's going to be."
I think the bigger issue was that it took me a while to understand that they didn't have the tools, the resources, or the understanding to truly help. They were working on an old and outdated behavioral model that really wasn't about my child's behavior. For them they thought it was about her behavior. But in the end, through Asperger Experts, I learned it wasn't the behavior that was the problem. It was what was triggering the behavior.
I feel like, if somebody would have knocked on my head, hit me in the head with a brick, and said, "Listen up, we are missing the point!", then that would have been great, so I am trying to do that now with the reader. I find other people with kids who are struggling and trying to get the help they need and they get frustrated, and say "My kid spends all their time playing video games.", or "My kid refuses to do X, Y, or Z", or "My kid has a meltdown over this.", or "I'm worried that my kid isn't socializing enough."
They're looking at the behavior. They don't realize it, but they're looking at the behavior, and then their anxiety starts to amp up. And now they are worried about their kid's behavior and then they start to panic, and they start making demands of their child that the child just is simply not capable of fulfilling, because of the underlying problem of the parent being in Defense Mode.
My name is Jeff, I'm a dad of 3 kids living in southwest Washington state.
I started to notice that my kids were on the neuro-diversity spectrum early. Zack, my oldest, was slow in early childhood speech acquisition and there was talk that he might be mildly autistic as young as three.
Samantha is funny. Within the first six months of her life, one of the things that she would like to do is bonk heads with me. If I picked her up and held her, she would look at me and then butt her head against mine. And so from a very, very early age, I suspected that she was different, and in a different way than Zack as well. She's actually a lot like me, I feel for her in that regard.
Beth is probably right in the middle of the bell curve. She's about as in the middle of the bell curve in terms of development and in terms of social skills as you can get. Well, actually in terms of social skills, she's probably significantly towards the more social, prosocial side of the bell curve.
For Zack & Samantha, we suspected they were on the neuro-diversity spectrum pretty early on. Now as a parent, there was a push to pathologize immediately, to create my son's language issues as some kind of a disorder. I had done enough linguistic study when I was in college to know that early childhood language acquisition is incredibly variable from individual to individual. So although I went along with the speech therapy and that kind of thing, I resisted medication until he was in probably the fifth or sixth grade. And by then he had a diagnosis for ADHD. He's been on Vyvanse or Concerta, one of those two for a long time. Samantha is also on Concerta.
My perspective was that by applying a label like ADHD or autism what we were doing is pathologizing a portion of the normal expression of two things. We're pathologizing a normal expression of human variability, and number two, we are internalizing behaviors that may very well have strong external factors, while not addressing those external factors. We only treat it as a pathology within the individual who's expressing it, as if having a person who had sleeplessness because they were in a room with a chainsaw, we gave them drugs instead of turning the chainsaw off.
My name is Emma. I live in Northern Colorado and have a son and a daughter. We started with Asperger Experts about five years ago. At the time we had just gotten my son Oliver's diagnosis of Asperger's, so I said to myself "Alright. Well, first thing you do is you get ABA and you listen to what all the doctors and the teachers say." I was also a teacher, I have a a Master's in education so I thought I knew everything about kids and was approaching this from the standpoint of everything I learned in college.
We had behavior charts set up, and I was even teaching other teachers on how to do classroom management. I was applying the things that I was teaching to other teachers at home, and none of it was working. It was just making things worse and worse. Things were falling apart.
I think the first thing that really gave me a clue that something was different about Oliver was, he was about two years old, and we used to have this plum tree in the backyard, and it had green plums on it. We were waiting for the plums to get ripe and he kept going up and picking the plums before they were ripe, and I kept saying, "No, no, we don't do that." The more I did that, the more he'd go pick them, and so then I'd give him time outs. I did everything the way you're supposed to do. There was a positive consequence for not pulling the plums, a negative consequence for pulling them. No matter what I did, it got worse and worse. He just kept pulling all the plums.
So I thought, "Oh my gosh, this has worked with all the students I've worked with. This has always worked. Why is this not working?" When he was old enough, we put him in preschool, and he kept getting kicked out of preschool every day. So we thought, "Is this normal that kids just get kicked out of preschool daily?" then we put him in into transitional kindergarten. The teacher there could not teach him unless I stayed there with him the entire day. I would watch him, and I'd watch the other kids in the class, and his reactions were just completely different. Like this wild animal I did not know.
One day a bell rang, and he started grabbing his ears and getting down screaming, and I thought, "Wait a minute. Maybe I should see about getting him diagnosed for Autism." That was scary to me at the time. I think it was scary because I had only ever been told that was a bad thing.
My name is Emily. I'm a mom, and an Aspie. I have two Aspie sons. One is 20. One is 19. I am a retired lawyer who had to hire a lawyer to sue my school district because of what happened with my son. Right off the bat I want to say that I would never have done that by myself. I think you need to have a professional. If you're living in a school district that doesn't want to work with you, if you find yourself at a meeting and you're confused, bring in a professional.
We've had a very long 20 years for my son Michael, also for my son Adam, who was the sibling who had to deal with this. So, Michael was originally a very happy, brilliant child, and I thought he was perfect, like we all think our kids are perfect. Then we learned there's no such thing as perfect. We're all perfectly imperfect. One of the first things we noticed with Michael was he had some sensory issues. Then we noticed learning disabilities, including dysgraphia, which is difficulty with the process of writing. He was diagnosed with Aspergers at the age of 9.
At that time, we were in a school district that they said, "All our kids are special, but we're going to send your child to another school." I said, "What are you talking about?", and they said, "Well, you know, all our kids are special, so we're going to send him to a special school for his needs". It occurred to me that what they were really saying was, "We don't want kids with learning disabilities in our school."
Hi. My name is Kim. I have 2 girls, Sophia and Madison who were officially diagnosed at 16.
They're twins. So when they were little, a lot of things were masked in the sense of, "Is this a twin thing?"
Starting with when they were going to preschool at three, they had major separation anxiety from me, and cried and cried when I would leave them. But then after I left, they actually had a great time and loved school. I mean, when I picked them up, they were happy. They were playing. But that initial separation was really, really tough.
By accident, I was late one day. So the way it worked is that you would drop them off, and it was free play time. And then after all the parents dropped off, they would bring them inside. Anyway, I was late, and they were already inside in circle time.
When we walked in, the girls just walked right in and sat down. There was no crying, no "Mommy, don't leave." And I went, hmm. And so I called the person in charge and I said, "Marie, can I come this time tomorrow instead and see what happens?"
So what I realized was that the free time was just too overwhelming. Them knowing they could come in and sit down, and know what was expected was less overwhelming.
I'm Cate, and my son is Teddy, and he's wonderful. He's twenty three now, and he still lives with us. He was not diagnosed with Autism until he was sixteen. I tried to have him diagnosed when he was three. He's the youngest of four, so I had some experience with having children before, but there was something different, so I was concerned. So we took him to a doctor and they ran a bunch tests and decided that he qualified for special ed preschool, but they couldn't give him the medical diagnosis. I kept wondering if maybe he had Autism, but they kept telling me that he didn't.
When they finally diagnosed him at age seven, they did twelve hours of neuro-psychological testing, and they diagnosed him with cognitive disorder. I could have told them that twelve hours before; I was hoping for something more specific. He had special services up until second grade, and we put him in a multi-age program.
It was a program where they didn't have lots of resources, but I liked the approach and the multi-age aspect. It was a good environment for him, but they didn't have a lot of extra resources at that school, so they had to bring somebody else in to do Occupational Therapy with him. They continued OT through second grade, when he passed all of his OT requirements. And then they just exited him from special ed.
After that, we decided the school environment that he was in was a better fit for him than going to the larger school, where he would be in a resource room or something. The teachers were willing to, or rather had to, do a 504 plan but because he wasn't on the "list," he couldn't get specific special services.
We finally took him to the local Autism clinic and he was diagnosed at age sixteen. I remember the doctor bringing us in and telling us that he had ASD, and I started to cry. She tried to comfort me, and I told her, "No, you don't understand, these are happy tears."
I was delighted to hear the diagnosis because there were resources.