Wow, I’m so embarrassed. I don’t cry in front of people, especially my mother-in-law. We’re not exactly close, and she can be very critical and judgemental, so I tend to not tell her much. Somehow we got to talking about my son and that is always an emotional subject for me. I’ve mentioned my son a couple times, but never really talked about him. He is 18 now and in college. But there was something different about him from birth. Everyone thinks their child is special and different, and every child is. But I’m talking about different in a different way, you know?
I had a pretty normal birth experience, well there was the 54 hours of dysfunctional labor before the c-section, but otherwise normal. As a baby he was hard to settle down, never slept through the night, had terrible separation anxiety. He slept with us until he was three. Once he got too big for the bed we moved a little bed into our room that we put next to our bed and he slept in there. We got a lot of grief from “well meaning” friends and family about that.
He was fascinated by letters and numbers as a baby. He loved to be read to and he could tell if I missed a word or page. He adored Sesame Street and Wheel of Fortune and they calmed him down when he was over stimulated. He started to read on his own when he was two. Not just words, he could read a newspaper or magazine. He had no idea what any of it meant, but he could read it. Even words like “Psychology” he would pronounce correctly. He was fascinated with maps and math. He knew the capitals of every state by age three and the he could tear pieces of cheese into shapes of states. He could add and subtract with ease – he would say its 6:48, Sesame Street starts in 12 minutes! After doing research about learning disabilities a couple of years ago I realize that these abilities are due to a strong rote memory.
My son had a lot of sensitivities. He couldn’t wear uncomfortable clothing, he didn’t like loud noises, crowds, smelly things and was a very picky eater. When we would take him to a concert like “Sesame Street Live” we would have to sit at the very top of the arena as far from the action as possible. My husband took him to a professional hockey game once. He made it through the national anthem, then the crowd went wild yelling and stomping and my son freaked out and they had to leave. Even the phone ringing would send him into a panic.
At nursery school the teachers loved him. He wouldn’t play with the other kids, he’d sit and chat with the teachers. They were amazed at his ability to read, do math, understand measurements, and know the names of everything. He had very poor fine and gross motor skills and couldn’t really keep up with the other kids on the playground, so he’d just sit on a bench with the teachers.
His kindergarten teacher told me that he was very smart, but had poor social skills. He was very bored in kindergarten, and I met with the principal many times to get more interesting activities for him. The school library wouldn’t let my son take out books unless they were from the kindergarten section, even though he was reading on a 5th grade level. I asked if perhaps the reading specialist could help him choose some books, but I was told the reading specialist was much too busy to deal with kindergarteners.
Since kindergarten was half day I thought maybe he could spend the rest of the day in a first grade class. The principal took him to first grade one day, and reported back to me that my son was very intimidated and it wouldn’t work. They gave him a placement test, which was a written test. Unfortunately due to his poor fine motor skills most of the questions were marked incorrect because they couldn’t read the answers. If they had given him an oral test he would have scored 100% on a fifth grade level.
I decided I didn’t want him at that school after kindergarten, so I took him to a magnet school for gifted and talented students. He was tested, using appropriate tests for gifted children who couldn’t yet write, and he passed with flying colors. Then there was a lottery, since there were so many applicants. He got in, and he ended up going to that school for 1st and 2nd grades. I had to put up with a lot of grief from “well meaning” friends and family for that decision – taking my son from his home school halfway across the county. It was a good experience for him.
Then we moved to a new school area, since my daughter was starting school and they couldn’t be in two different schools. So he moved to our new local school and it started out well. Fourth grade things went way downhill. He had a very critical teacher, the class size was too large, and his grades, although average, didn’t reflect his abilities. I tried to convince my husband that my son needed a special school, a private school, but he didn’t agree and said we couldn’t afford it. I did convince DH to let me take our son to a reputable hospital with a gifted testing department. He had a full neuro-psych test, which was expensive, and was diagnosed with ADHD. I disagreed with that diagnosis, but who was I to argue with a world renowned hospital? He had a high IQ, but a large descrepancy between his verbal and performance IQs, and a lot of subtest scatter. We put him on ritalin and then concerta, neither of which did a thing for him except cause him to lose weight.
Throughout this time my son was still suffering from anxiety and sensitivities. I decided to take him to a therapist. She was amazing, and helped him so much. She also recommended I take him to a psychiatrist who put him on zoloft. DH was very opposed to this, but decided to give it a try. It’s hard to put a 9 year old on antidepressants, I can’t argue with that. But the change in him was amazing. He was so much more calm and controlled. He focused much better in class too. So much for ADHD.
Since I now had a diagnosis I thought I could get my son either an IEP or a 504 from school. We had yet another meeting, and I was told that as long as he was performing at an average level on grade level work he was not eligible for special ed services. It doesn’t matter that he was not working up to his potential. (Things have changed since then by the way, so the criteria are much different now.) I was very frustrated. It didn’t seem like there was anything I could do to help him become successful in school and enjoy it as well. His fine and gross motor skills continued to be poor and he wouldn’t play with the other kids outside at recess. He liked to stay in and “help” the teacher. I had his fine motor skills tested and was told they were not bad enough to warrant occupational therapy. But the teachers kept writing notes on his papers saying “Messy” “I can’t read this”. But he didn’t know what to do about it. I took him to a handwriting tutor, which helped a little. He was forming his letters incorrectly, which he still does, but now he types everything so it doesn’t matter.
In fifth grade he just gave up. He stopped doing all work in and out of school, and his grades weren’t great. The grades continued to be average, because of his intelligence he did well on tests and that alone was enough to keep his grades high enough to keep him out of special ed. His outside life consisted of hanging out at home playing video games and computer games. We tried various sports, but he wasn’t good at them and hated them. We also had therapy every once in a while, but he never was cooperative enough to benefit.
In sixth grade I had him tested again, at a different hospital, but still a well known Children’s hospital. Again they said he had ADHD and executive dysfunction. I tried again with the school system, but again was told he wasn’t eligible. I felt like I was banging my head against a wall. I again told my DH that our son needed a special school, and again he said no.
Skip to 11th grade. I couldn’t stand the fact that the grades were now going even further down, from C’s to D’s and even an occasional F. I found a new therapist, who I immediately felt a rapport with and thought would be great. His story will be another blog entry. My son saw him for over a year. Therapeutically absolutely no progress was made, however the therapist did help me get my son special ed services. He referred us to a neuro-psychologist who did another round of testing (even more expensive). By this time I was convinced that my son had Non Verbal Learning Disability. I did a lot of research and talked to a lot of people – parents and professionals. I specifically asked this neuro-psych if she was familiar with this disability and if she had experience testing gifted kids. She assured me she did.
What was her diagnosis? It pains me to say. First, ADHD. Of course. When in doubt a kid always has ADHD. Second, dysgraphia. I agreed with that, yay! Finally someone validated my knowledge that my son couldn’t write. Third, schizoid personality disorder. Needless to say I was shocked about that one. He was only 16 years old and she was diagnosing him with a personality disorder? I was stunned, I was crying, I asked the therapist if he thought it was true. He didn’t know what to say, he seemed surprised also. I made her take that out of her report. I did not want my son having a personality disorder label at age 16, especially since his symptoms didn’t meet the criteria, in my opinion. Later my son began to see a psychiatrist for medication management, and the psychiatrist was very concerned and dismayed that the diagnosis was made. He thought it was totally inappropriate.
I still thought my son had Non verbal Learning Disability, and when I asked the neuro-psych why she didn’t think so she gave me a couple of reasons that had nothing to do with the criteria for the disability. NVLD isn’t in the DSM, so there are no specific criteria, but it’s what I think his diagnosis is and no one is going to change my mind. He meets all of the unofficial criteria according to all of the research that has been done to date.
So second semester junior year my son started with a special ed teacher, and was in supported classes. He managed to graduate high school, and got into a good college with a scholarship! Not a very academically challenging college, but it’s a good one. He started in September and took four classes. He failed three and got a D in the fourth. He lost his scholarship. We have told him that he needs to get 2.0 with no F’s this quarter or he comes home. I don’t want him to come home though. He is enjoying being away from home, he finally has a social life, and there would be nothing for him to do here.
So all of my MIL’s other grandchildren (she has 6 others) are great kids. Great at sports, average to smart, good in school, all around great kids. My son is the one who is different. He’s a great kid, just different. I was different too when I was a child, so I guess he inherited these things from me. And due to having too many of Sandra Lee’s appletini cocktails I got all emotional and had a long teary conversation with MIL which I regret immensely. We’re having a big family dinner tomorrow night – I’m dreading it. It’s all Sandra Lee’s fault.
I’ll write another blog post one day about how I feel about my parenting skills in raising my son and how I feel about all of the mistakes I made along the way. A lot of my current issues are related to this.