When you don't fit....

It’s been a hot minute since I last posted. I find it difficult to keep up with writing while trying to balance everything else. But over the last couple of weeks I have found us spinning into frustrating territory and hope that putting thoughts down will provide some rest to my weary mind. The question at hand, what do you do when you just don’t fit? Anyone who knows Joseph’s story knows that he is uniquely different. We have stumbled from mental health, to genetic abnormalities and organic brain injuries. Regardless of the cause for Joseph’s differences the struggle remains that he just doesn’t “fit” anywhere. This becomes more and more apparent as he gets older and has brought on new sets of challenges as we strive to find services and programing to help him be as successful as possible. I had a meeting last week to discuss summer programing for Joseph to start gaining some vocational skills in the hopes to help him gain employment. Now all the summer programs are minimal for someone his age (soon to be 16) and short in duration, lasting only a few weeks and a few hours Monday through Friday. Now that may be fine for most kids and maybe even kids with disabilities. However, given Joseph’s special learning needs it takes repeated instruction over long periods of time to gain a fraction of a skill needed to be employable. Now as it was explained to me the programing that would most benefit Joseph simply doesn’t exist. There is not one on one or small group programing. There isn’t programing that would extend for a full year or even the whole summer. And because of funding and constraints of policies for the program they would most likely be unable to accommodate providing services that would be beneficial to Joseph. Well great! He doesn’t have the ability to go get a job on his own but the program to help him do that can’t? Then there is the school. Anyone who has read this blog or had a conversation with me knows how the well the school has helped provide Joseph with appropriate accommodations…. NOT. We have had advocates, facilitation and even gone to State Board of Education, only to have a beautifully written IEP that isn’t followed. I am so tired of fighting with these people who show us every day in every way that they simply don’t care about my son because he is nothing but a behavior problem with an ED label. Joseph came home today and told me “ Ms. ******, says there is nothing wrong with my reading, I read at grade level.” Now most parents would find that good news. However, Joseph just had a comprehensive neuropsych evaluation at Cincinnati children’s for his 3 year ETR which stated “ Compared to others his age, single-word reading was average, but reading of text was overall very low with low average fluency and reading comprehension”. Now trust me when I say Joseph has not made academic progress to grade level fluency in 3 months since this evaluation was done. Joseph has not even made academic progress in 4 years. So telling a child of low to low average intelligence that he is at grade level and can do grade level work does not help him. It does not help him when he cannot do the tasks because they are above his level of understanding. It does not help him set realistic goals for his future abilities. It does not help us in always appearing to be the “bad guys” who think “ he’s stupid”, because the teachers say he can do it. The school looks at Joseph and has said on multiple occasions that when he “can’t” do the work it’s because he “chooses” not to. Well I am sorry but being low to low average intelligence isn’t a choice. The issue with all of this is that it isn’t benefiting Joseph. He needs program that understands his executive functioning deficits and helps him develop skills to improve some of that. He needs a program that helps him with functional literacy, like budgeting, cooking, independent living skills. The problem is as far as I know a program like that either doesn’t exist or Joseph simply doesn’t “fit” into the box needed for that programing. I feel so lost and scared for my son. He will be 16 in July and in 2 short years will legally be an adult. The trouble with Joseph is he is high enough functioning to want all the things a “normal” teenager/young adult wants but, not high enough functioning to do a lot of it independently. I am not sure how to be able to help him with any of it. I am not sure how to provide him with the tools he needs. I am so frustrated with having to fight all the time for help that doesn’t exist because he doesn’t fit into the box.