Today I cried on the way home from dropping my six year old son off at his autism therapy center. Last week, we found out that his morning therapist would be replaced.
We love her. She’s been Johnny’s therapist since we started there almost a year ago. Over the past year they have developed a beautiful bound. Johnny will run up and hug her the moment he sees her.
The sadness really hit me today, as he started with a new therapist. Once we entered, Johnny immediately looked out the window searching for his old therapist, with the sweetest look of excited anticipation in his eyes. I explained again that he would still see her around but now he had a new therapist. I could tell he did not fully understand. That look out the window just about broke my heart.
They do this every so often, switching therapists to make sure he is able to grow with different people, and also because there is a high turnover rate. I understand the process and as much as I loved this therapist, I realize it is probably (hopefully) for his good.
The part that truly makes me sad, is how at the age of six my son has already had so many different teachers, therapists and doctors. He has already been through many evaluations and observations. In the fall we will reenter the public school system and be given a new IEP and yet another new team of helpers.
Of course we are forever grateful for all these helpers. He needs the help and we want that for him, but it’s also a lot for a little kid.
I know because I was an IEP kid. I was on an IEP for a reading and writing disability until the 7th grade.
I remember being pulled out of class, for special education class, everyday in elementary school.
I recall groups of adults meeting about me. Sometimes with me, sometimes without – and sometimes talking about me right in front of me, like I wasn’t even there.
I was often being watched and evaluated by teachers and therapists, who I barely knew. And sometimes by adults that I didn’t know at all.
I often felt the expectation to show them everything I knew in that short amount of time. The pressure and my shyness did not often allow for it. I felt like I was missing out on what the rest of my class was doing while me and a few others were away from the room.
I will say I was very fortunate, that I was rarely bullied for not being as smart as everyone else. I would have teachers and therapists try different things in the regular classroom: writing boards, different pencil grips, little typing computers and devices. Other kids always said it was so cool that I got to try those things.
But I honestly don’t know if it was said out of pity or genuine kindness and intrigue. Maybe they felt bad seeing me constantly watched, often right over my shoulder. Maybe they thought nothing of it. I am so grateful for all the help I received.
I remember the day I was called out of class and entered a room in my middle school, one that I didn’t even know existed. As I entered I was surprised to see my parents, all my teachers and a few strangers.
I had no idea this meeting was taking place. Smiles filled the room as I walked in, but I felt very uncomfortable. All I could think was “why is this happening?” “Why is it me and all of these adults?” “How long have they been talking about me?” I’m sure it was said but I don’t remember anyone saying that it was an IEP meeting. It was my last IEP meeting.
I had made it.
I had achieved just average.The IEP wasn’t the end of it. I was in remedial english classes through the 9th grade, until once again in 10th grade I was put into the regular ol’ english class.
I clearly remember those moments because it felt so good to be average. I needed nothing more than to just be good enough for regular. To not stick out in a “bad” way. I do want to say I am unbelievably grateful for all those who helped and taught me throughout my education.
I remember my elementary special ed teacher the most of any teacher I had, because she saw me for me. On the other hand It would be a complete lie if I said I was not still affected by all of it.
The “Individualized” part of an IEP is amazing, but it can also be isolating. I was always being talked about. I know it probably wasn’t true, but I always felt like a problem. I was a problem dozens of grown ups were trying to solve.
I think about all of this with my son. He has so much more to deal with than I ever did. He always has a team of people in and out while his peers have one main teacher each year.He is always being watched and even I am guilty of talking about him as if he can not hear.
I don’t want him to ever think he is not good enough because he needs more help. Still to this day my disability is part of me. I am proud of how far I have come, but at the same time I feel like I never caught up. It’s an insecurity that I do not think I’ll ever overcome.
If anyone ever tells me I am good at anything involving reading or writing, I’m shocked. All my endeavors are to be good enough to be average. I will never feel like one of the smartest people in the room.
I think one of the hardest parts of Johnny’s diagnosis was feeling like it was my fault. Not only did I pass on my learning disabilities but I know that my child will likely always feel this way. The way I feel and felt as an IEP kid.
I don’t want to project all my feelings onto my son. He is an individual. He may not care. He may find a greater fight in himself to achieve greatness. I just hope I can do everything possible to ensure that he does feel like any less of a person and make good decisions for him.
Today my heart is sad that Johnny has a new therapist. Part of me wants to trust the system and know this will be good for him. The other part of me questioned just about everything, as I watched my son walk off with his new therapist and then cried my way home.