Cole has been having trouble in school for a couple years now. It mostly involved him refusing to do his work although he's perfectly capable of completing the work. This school year started off no different, but I think his teacher this year wasn't happy to just let it go. She has really pushed with him, trying to get him to do what he's supposed to do without success. And then she began reporting things to me that were a little more disturbing, like the fact that he has only one friend at school, or strange behaviors he was displaying (talking to himself, pulling his hair, things like that). We began taking him to a marriage and family counselor hoping that we'd be able to figure out how to get him to do what he was supposed to do, but after the first appointment with the MFC, it became obvious to me that there was something more going on. So, three months ago, I began the process to get him tested by a neuropsychologist so that we could get a diagnosis of what exactly was wrong so that we could then begin to treat it and help Cole succeed in school.
In the meantime, I began to take on a much larger role for his schooling, trying to get him back on track. Our straight A student came home with a D on his last report card, so it was obvious that he needed more help from me. I spent three weeks where I went to his school twice every day. I went in the morning to give him a recess (his grade doesn't get recess until 2 pm which is difficult for a normal 10 year old boy, but impossible for Cole) and then in the afternoon, I would spend 3 hours in the classroom with him helping him stay on track. On the days that he absolutely wouldn't work, I brought him home and did some "homeschooling" with him using the work his teacher gave me. I even kept him home on days after he had a really bad day so that I could get him caught up on his work. I had to stop pulling him out of school because I was told by his teacher that if he reached a certain number of absences that, regardless of the reason, the courts would get involved and I could be fined for not having my son in school (interesting since essentially I was insuring my son was getting the best education possible). I recently stopped spending every day in the classroom with him as well because it just wasn't helping long term. Really what Cole needs is an Individualized Education Plan, but without a diagnosis, the school couldn't help me even though it was obvious to his teacher and I that accommodations needed to be in place for Cole (his principal, in his infinite wisdom, told me that my son is ADD and as soon as we medicate him for that, the problems would be solved basically). It has been a very difficult thing to watch your son struggle so much and know that you are his only advocate, the only one on his side pushing and fighting for him. I just kept thinking that we just needed to hang on for the diagnosis because the IEP was coming if I could just wait long enough for a diagnosis. Of course it was always on my mind that I could just pull him out of school and homeschool him, but I had a lot of reasons I hesitated to do that. The biggest reason I hesitated is that Cole is having problems socially and I felt that it would be counterproductive to pull him out of his biggest social environment.
Last month we finally had the testing date. Cole and I spent 8 1/2 hours down at Phoenix Children's Hospital while the neuropsychologist tested him all day. I prepared myself well for a day in the waiting room with my laptop and books, but while I'd been warned it could take up to 6 hours for the testing, I hadn't actually thought it would take that long. I saw another family in the waiting room with me all day, so I knew they must have been going through the same thing, but even they left before we did. I just kept telling myself that all my time would be worth it if we got a proper diagnosis out of it.
That brings us to yesterday when we had the appointment to get the diagnosis. She diagnosed Cole with Pervasive Developmental Disorder (which autism falls into this category), but it's kind of a catch all when they don't know exactly what is wrong. She said that she knows that there is something wrong with Cole socially but that it's being muddied right now by his second diagnosis, so until we get that under control, she won't be able to pinpoint exactly what is going on with that. Cole was also diagnosed with Depressive Disorder which is impacting everything else that is going on with him and making it hard for him to want to be social. I've set up an appointment with a psychiatrist's office so that we can begin to get that treated, and hopefully once we've got that under control we will see some improvement with everything else. In fact, we are supposed to get it under control and then take him back to the neuropsychologist so that she can get to the bottom of his social problems.
With all of that, from what he was scoring in some things, it is obvious to us why he is having trouble in school. Some of the other things that he tested poorly in were in his executive functioning which is how the brain handles tasks. It handles working memory, our ability to get started with work or breaking down large amounts of work into more manageable parts, and complex problem solving among other things. This alone explains a lot of Cole's problems in school because his brain just isn't capable of handling things the same way. He also has trouble with his processing speed. Much like a computer's processing speeds affect how quickly a computer can handle tasks, so does our brain's processing speed. Cole's speed is just much slower than other people's, so it takes him much longer to complete a task even though if you were going just based on intelligence he should have completed it much faster than most people. This speed is also affecting his fine motor skills, and he's having some trouble with problems that involve his fine motor skills. When explaining these results to us, the neuropsychologist showed us a bell chart and explained how most people fall into the bell shaped range while anything outside the bell shape is abnormal, either high or low. Most of the things that he tested low on, Cole is actually testing in about the average range, but his intelligence is so high that sometimes the difference was twenty points or more which is really abnormal. She was explaining to us how we want to get his functioning skills to match his intelligence more closely. Another interesting factor was his score on independent skills (such as his hygiene, tasks related to taking care of himself). With his intelligence in the abnormally high range, so should his independence fall into that high range. Cole tested so low on this that he would be at the same range as someone with mental retardation. What this has meant for us is that it will be things like us having to tell him five times to brush his teeth before it gets done every single night. Or that if I don't tell him to change his clothes and underwear, he will literally wear the same thing every day. This score didn't come as a surprise to us since we've been dealing with this for a really long time with him, but it does give me hope that maybe we can get this under control. The neuropsychologist already gave us some ideas on how to deal with this, so I'm happy that we can get started on helping him become more independent.
I'm sorry that this post ended up so long, but I hope that I was able to explain things well enough to understand. Since I'm just coming into some of this knowledge, it's hard to explain to others what I'm just starting to understand. For any of my stamping people that have actually made it this far, I hope this explains why I haven't been holding classes the last few months. I hope that as we're able to get him the help he needs that I'll be able to resume doing some of the things I want to do. Obviously as a parent when push comes to shove, you do whatever you have to do for your child first and put your own needs after your child, and that's kind of where I've been for the last few months. As we gain more control over these things, I hope to be able to stamp more and do more of the things I want to do. But, most of all, I just want to see my son succeed at school and be happy.
Friday, December 9, 2011
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5 comments:
Jessica, you are amazing! In all of this, however, don't forget to take time for yourself and your other two kids. You will rise to whatever comes. Prayers.
You are amazing and I am so glad you have felt impressed to get further testing for Cole. Things can and will be so much better for you guys. This all sounds so familiar to me, with what I was going through with Teighlor, they could never give me an official diagnosis other than ADHD and then when she was older they said she has Auditory Processing Delay which is what you were talking about with slow processing. Also for Teighlor they gave her an IQ test and couldn't give her an accurate score because some things she scored very high on and others very low (some bordering mental retardation), but the things she scored high on, logically she shouldn't have been able to to score high on because the things she sored low on we're the basic, logical skills of life. Kinda sounds similar to what you are saying about Cole. Many years ago, they didn't know about the rainbow spectrum of Autism so she never did get an official diagnosis, but I was able to get an IEP for her and she qualified for SSI disability. We are having to renew her IEP, because as a Junior in High School, she is starting to really struggle.
Again, I'm here if you need to talk. Good Luck and keep with it.
i tried to post a comment and blogger was being crazy so sorry if it posts twice!
it's too bad that not all kids have such great parents/advocates. i had student's whose parents never attended iep meetings to even get their kids placed. know your rights and don't be afraid to fight for you kid (doesn't sound like you are =)
You go girl! You do what you need to for your son! He is the most important. Glad you are finally getting some answers!
Your christmas card was returned. I need your new address. email me at kimberlynevels@cox.net
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