Jordan was in 7th grade when he was diagnosed with Aspergers....From the time he was small, he was different. The first IEP , well that was a hard day, but I remember it well. For those of you who aren't familiar with the term, an IEP, or Individualized Education Program, contains goals and a description of services that will be included in the education of children with disabilities to help them reach educational and developmental milestones according to their individual needs.
Jordan was finally healthy and was signed up for pre-school! We were all so excited! None more than me who selfishly needed a break from this little guy with more energy than the Edison Electric Company! Secretly I dreamed of blissfully reading a book, or cleaning the house uninterrupted or just having a cup of coffee without an event. First he had to get through the screening process. He is a smart little guy, taking the electric plates off all of the outlets at two years old. How hard will this screening be? Deep down though, I was really hoping maybe they could tell me why he was so, well, different. The total meltdowns, the climbing the walls (literally), the jumping off of the fridge over and over, not wanting clothes on, and not interacting with other toddlers but playing alone, when he got upset he would run and flap those little bent arms like a baby bird ready to fly-I think he would of, if he could have!
The day was bright and sunny, unlike the morning struggle to get ready to go. "Don't you want to go to school like Mandi?" I asked as he wanted to be like his big sister, so this worked. A nice plus was this was the screening that had Occupational, Physical, and Speech Therapist, along with the Psychologist, Teachers, and special education teachers. This was because we had noticed all of the different things about Jordan along with the therapist I worked with. I don't know now, on my own, if I would have gone so soon to this early intervention had it not been not for the OT that I worked with at the hospital recommending it for Jordan. He was three and a half years old.
The screening took two days, and then they said they needed time to evaluate the results and we could come back when they called and scheduled a time for the results. It didn't take long, they called by weeks end and set up an appointment with Todd and I the following week. I should have brought a huge box of tissues! Don't you think that should be included in the stuff to bring along items, along with birth records, and shot records?
I remember walking in and being ushered into a room that was as big as a living room, but with two long eight foot preschool sized tables line up facing a white board. On one side there were chairs for Todd and I to sit in. On the ends and along the other side were ten more chairs for the "professionals". It seemed like they had brought a small army of people. Talk about being intimidated! As they went around the room, one by one they told us who they were and what role they played. I was not going to remember all of their names and my eyes kept straying to the white board behind them. It was full of words about my son. Two stood out to me; Happy and Tries hard. Honestly the rest of the words, which covered the white board behind them, overwhelmed me. So many deficits.
The Special Education Teacher began to talk about this thing called an IEP that they had written up for Jordan. To get the IEP written they had done many different kinds of testing, motor skills, behavioral, IQ, on and on she went. We really tried to keep up but I know I just kept hearing "very low", or "abnormal", or "not at age level", except the IQ...that was "very high". He is three and I have totally messed him up. I remember the tears began to flow as they kept talking about this "sensory integration", and "doesn't interact with peers". How could we have messed up this bad? I blurted out "Someone else needs to parent him, because I can't, I have totally failed my child"!! At this point someone finally realized that the parents in the room were about to have a meltdown. You have to understand the white board was FULL of deficits! Todd remembers around thirty problems that needed attention. These are the things that your child does not do well, doesn't know how to do, or does abnormally. And my child's deficits were on the two whiteboards that filled the wall behind the professionals we were looking at. Now, I had tried to research IEP, Individual Education Plan, for myself. I thought that it was a wonderful document that showed how the educators were going to help my son reach goals and be successful. (and it is now) Back then, it was full of sentences I didn't know how to interpret.
I do remember this; Jordan has clear scores that indicate ADHD, and SID. Sensory Integration Disorder. Sensory what??? They did test him for Autism, but his IQ scores are way to high to indicate that. He also has motor skill delays, both fine and gross. In addition, he shows OCD tendencies. (Really! Remember my blog about trains :o) ) My thought really was "what did I do to my child"? They asked us if we had any questions. Questions?? I couldn't even think. I know it was horrible but I honestly couldn't think of anything that actually made sense to ask. They went on to talk about his constant ear infections affecting his speech so he would need a Speech Language Pathologist to work with him. PT and OT for the motor skills. Dietitian to address his Hereditary Fructose Intolerance, and Ketotic Hypoglycemia.
What did all of this mean? Could Jordan go to preschool? Would he ever really fit in? So many questions!! My husband and I asked to take the IEP and the evaluations home so we could read and try to understand them better. Reluctantly they "allowed" us to do this. They wanted us to sign them right then and there, but we were wise enough even back then, to know we needed to read and understand it. We scheduled another IEP meeting and left with copies in hand. Thankfully, the therapists that I worked with, were kind and patient as they read it with us and step by step explained it. We put our own comments in the area where the Parent Comment section was. No one had told us at the meeting we could. Also, no one explained about the weighted vest, the bubble seat, or the wedge at the meeting, so I am so glad my OT friend helped us understand how this would help Jordan focus.
I am overwhelmed at the horrible flashback this is conjuring up inside of me. My husband asked "horrible or depressing"? Both!! What must it be like for those who have no therapist friends, no advocates, and no support? For those of you who find yourself in that position, know you are not alone! In sharing this journey, I hope to become a little of that support for you! This blog will be continued as soon as I go and re energize my heart and brain!
Till the next (all about IEP) meeting....
Kim
- Jordan and his little brother
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