IEP evaluation frustration

Venting, that’s the reason I originally started this blog. To set the thousands of thoughts running through my head free and hopefully end up with some sort of clarification or relief. So here we go.

Today was Wyatt’s IEP evaluation. In Osceola County it’s called the PEEP program which is just a fancy name for the school district’s early intervention program that the child can transition into once they turn 3 years old. Wyatt had a few speech therapy sessions here and there through the Early Steps program, which is for ages 0-3, but they were never able to find him a speech therapist who was fluent in ASL and at the time, Wyatt also wasn’t very receptive to therapy sessions. He simply passed out when he didn’t want to participate. So here we are 3 years on this journey and we have to put him through yet another developmental evaluation. Just for the record, I hate those evaluation! Yes, HATE them with a passion! The questions are very generalized and don’t leave room for more elaborate answers. It’s mostly a score of 0-4 on how well he performs a task and the parent has to answer a lot of yes and no questions regarding his abilities compared to what a “normal” 3 year old should be able to do. I have several issues with this type of testing. For starters, the questions do not differentiate between communication vs. speaking. That’s a big deal for a child who is non-verbal. Just because Wyatt does not speak that does not mean that he is not communicating. Therefore, a simple yes or no option for an answer is not sufficient. That’s a big issue and can falsely alter his score. Second, halfway through the evaluation Wyatt lost his patience so cooperation at that point was a problem. There were definitely some tasks that I know he can do but he simply didn’t feel like doing them at that time. The darn evaluation did take 2 hours to complete and what 3 year old has patience for that. And then there were questions that I didn’t even know how to answer. I was asked to specify the different sounds he makes. I don’t freaking know, they are just sounds. There are no actual words and the sounds are not specific vowels that fit nicely into the printed test booklet criteria. But there is a difference in pitch depending on the situation. Those type of things can’t be explained to an evaluator who has never met Wyatt and will probably never see him again. So the whole time I felt like we’re portraying him as this mentally retarded kid when in reality the things he will and will not do primarily just depend on his mood and comfort level with the person who is asking him to do these things on command.  I did request an ASL interpreter to be present during this evaluation to see for myself how well he can be understood by someone who is fluent in ASL since that is his primary mode of  communication. While this was very valuable information for me, it was also very depressing. The interpreter was only able to understand 3 signs Wyatt used. His signs are still too modified and would not be understood out of context. So if he was asked to look at a picture and point to the ball and would then sign the word ball, the interpreter could understand. But if he did it out of context it would have been misunderstood because his fingers are not pointing the right way and his wrists touched. So that information was very important for me to know but it was also very frustrating at the same time. It actually makes me very angry because I have been practically begging for help with ASL instruction and have been ignored for the last 3 years. Everything he knows at this point, though it may only be understood by immediate family, was because of the effort we put in. We’ve have been working really hard to get him to where he is today, to allow him a form of communication that cuts down on his frustration level and therefore his tendency to pass out. But based on this evaluation, outside of immediate family, Wyatt basically has the communication skills of an infant. He taps a person’s leg to get their attention, he point at things he wants and he uses facial expressions to show emotions. As far as getting services approved for him I could look at this result as favorable. Having the worst case scenario on paper sure is helpful. But as a parent, it’s devastating to look at such a comparison. All the hard work we’ve put in over the last 3 years seems like nothing on paper when compared to a “normal” 3 year old. Wyatt has come such a long way and we have made huge progress in our eyes but that progress is so small in the context of a developmental evaluation. I almost wish I wouldn’t have put him through this comparison again. I have such a hard time coping with this information. It took me a very long time to accept who he is and to stop comparing him to the “normal” 3 year old. On a daily basis, I can now happily look at who he is as a person and enjoy every little accomplishment. But when we have to jump through the necessary hoops to get him outside help it’s like a slap in the face. That’s why I HATE this entire process. I don’t ever want him to feel like he’s not good enough. I know he will do all those things eventually in his own time. I hate being pushed into the mindset of having to fit some sort of norm. But as a parent of a medically challenged child those are the uncomfortable steps in the process you have to put up with if you have any hope of getting outside help. Simply put, IT SUCKS!  So, this evaluator will now type up his report and then it gets sent off to a bunch of other people up the ladder to decide what services he qualifies for. That can be anything from nothing at all, to just speech therapy at the local elementary school, to a full school day with all therapy services included. But for that decision to be made could take another 2 months as the school psychologist who administered the assessment warned me. When that meeting is schedule the real battle will begin as to what the school district will offer vs. what we want. It’s very frustrating to fight so hard to simply get outside support. It’s been 3 year and so far this fight has gotten us absolutely nowhere. I’d rather just know once and for all that we’re on our own, as we have been so far, than continuously jumping through these hoops without any results.