Just don’t think about it

Yesterday I went to an IEP meeting for my son Joshua. An IEP meeting is a meeting for parents and school staff of a student with a disability where they meet to make decisions on school placements and goals for the student in the school setting. Yesterday I met with Joshua’s school to discuss his placement for next year. The past two years he has been in a regular kindergarten classroom with normally abled peers, but he has had increasing amounts of time where a special education teacher was pulling him aside and working with him in a small group or individually because he just wasn’t making progress academically like the other children were. I knew for a long time there was something going on with him and that he wasn’t “normal”, I just wasn’t’ sure what it was. After some extensive testing this past spring we discovered what “it” was, Intellectual Disability, formerly known as Mental Retardation. He is on the line between Mild and Moderate, with his IQ being around 50. Most people you meet with Intellectual Disability (ID) have an IQ around 60-70, so he falls below that level. His IQ is higher than our daughter, who falls in the severe category, with an IQ of 25. Anyway, now that we knew what his issue is we begin discussing what our options are for his school placement. When you have a child with ID or Autism you can choose whether that child is in a regular classroom with extra help or put into what is called a self contained class with other kids who have a ID or Autism. It is a more specialized class with a special teacher and a lower kids to teacher ratio. Yesterday we decided that it would be best for him to be in a special class. We did that because he has been really struggling with anxiety and social issues and we feel that a smaller setting, that is more predictable, will help him.

This decision is not an easy one. It’s a big deal. The reason it’s a big deal is that once we decide to put him in this class he cannot come back to a regular class and he will not get a regular diploma, but he will get a certificate of completion upon graduation from high school. We are acknowledging that he will not be “normal”. We are acknowledging that he will never get a high school diploma and have a “normal” life. That’s not easy. It’s emotional and not at all where we expected we would be or wanted to be, but it’s where we are. We are doing what we feel is best for him, even if it’s not what we wanted. So, after I left the meeting yesterday I was feeling emotional. I wasn’t crying or anything but I was feeling the emotional weight and it was just under the surface. I was dressing my daughter for bed and I said to myself, “I just won’t think about it”. I can’t. If I spend too much time thinking about it all it will just make me too emotional. I can’t think about what we won’t have but just deal with what we do have. We have a little boy who tries the best he can. He makes progress in his own time. He isn’t like most kids, but that’s okay. We are trying to accept where he is and do what’s best for him in that place and not try to make him something he is not. I will not lie, that is hard. As a parent you want certain things for your child and having ID is not one of them. I never wanted to put my child in a self contained class, but no parent does. Some of us just find ourselves in that place.

Today I will go to a meeting for our daughter Kaki’s placement for next year. We are seeking to have her transferred to a special school for kids with very low IQ. We are accepting that even the kids in the self contained class she is in are much more capable than she and she needs more help. This school focuses on functional skills like dressing oneself and household tasks, rather than preparing kids for a job. We are accepting where she is and trying to help her be the best she is capable of. Our goals for her are simple ones of being able to be independent in some small areas like dressing, but that is the reality for her. For Joshua we hope he will learn to read and write and hold a small job that makes him happy someday. And we thank God for also blessing us with our “normal” kids. We, as a family, do not take for granted what so many do, of having an able body and mind and being able to make choices about what we want to do in our future. What job we might have and who we will marry and where we will live. Decisions that Joshua and Kaki will not be able to make for themselves. It’s perspective. Don’t take the small things for granted.


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