ABA 2 years later
It’s been nearly a year since I’ve written anything here. We attended the Imagine A Way gala a couple nights ago and it reminded me that I really want to update them and anyone else we don’t see regularly about Mara’s progress.
Mara is almost 6 years old and she has grown so much! She is happy 95% of the time, which is a huge improvement from a couple of years ago. She has almost no meltdowns now. This is thanks to therapy, medication, increased communication and maturity. Her life is so much better and our family can function so much better without meltdowns. She does still have the occasional episode of crying with no clear reason, but I am confident that she will soon be able to tell me what is wrong so that I can help her.
The most exciting update is that Mara is learning to read! She proves me wrong over and over again. I used to think that she couldn’t be potty trained until she could say, “I have to go to the bathroom.” Well, she still can’t say that and she’s been potty trained for over a year. I used to think that she wouldn’t be able to read until she could have a conversation. Wrong again. I believe more every day that there is nothing that my daughter can’t do.
Her expressive language is still significantly impaired, but she is making great progress. She makes some requests spontaneously. She answers many questions that we ask her. She still does not tell us anything about how she is feeling. She does not ask us any questions. I know that with time, these things will come.
She started kindergarten this school year and she is doing very well. She spends about 2 hours a day in a mainstream classroom with an assistant. The rest of the day is spent in an autism classroom where she receives her academic instruction and language support. We had our annual special education meeting yesterday where we tweak, rewrite and write new goals for her individual education plan (IEP). The most interesting thing in her IEP is that she doesn’t have any academic goals. I felt a little defeated when I first found out about this. I quickly realized, though, that this is a great thing. IEPs only include goals for objectives where the child is behind his or her peers. Mara is on grade level for academics, so her goals are just the regular kindergarten curriculum. The mainstream kindergarten teacher sends the same work that Mara’s peers are working on to her special education classroom. Mara then works on it in an environment where she can focus better and get one on one support. Her teachers said it is unusual to have a kindergartener come in with so many skills. This gives us a lot of hope for the future. Mara’s therapists are all convinced that one day soon, the flood gates will open and her language will explode.
While we are very thankful for all the progress we have made, there is an aspect of ABA that I am growing to dislike more and more. ABA is designed to help autistic people learn to communicate better and help with challenging behaviors. A common trait in autistic people is self stimulatory behavior, or stimming. I’ve grown to realize that this is not a bad thing. Not only that, but it is a necessary thing! Mara stims on a regular basis. She likes to carry small, but heavy, toys in her hands and bounce them up and down as she runs back and forth across the room. There was a time that I wanted her to stop these behaviors, but I have completely changed my mind! She NEEDS to do this. It calms her and helps her organize herself. The strategies in ABA are intended to help her replace these behaviors with something more “appropriate.” The idea is to help her “appear less autistic.” I’m done with this. She IS autistic. Our goal is to help Mara learn to communicate. We want her to share her thoughts and feelings with us. We do not want to change who she is. My job now is to make sure that her therapists know that Mara is allowed to stim and they are not to try to stop her. We can put time limits on her stimming, but if she needs to spend a few minutes bouncing, I am certain that it is necessary to let her meet that need and then get back to learning.
So while Mara has grown a lot over the past year, I’d like to think that I’ve grown, too. I’ve grown to accept my girl for who she is. I’d be lying if I said I wouldn’t be happy if she woke up tomorrow and wanted to play barbies with her sisters. I’d be lying if I said I didn’t wish it was easier for her to make friends and play with other kids. But I’m not lying when I say that I love her exactly as she is. She makes me smile every day. Nothing about her embarrasses me. She is beautiful, brilliant and loving and I am the luckiest person in the world to be able to call her mine.