I remember reading a few weeks ago about Autism Speaks having a live chat with Dr. Temple Grandin. Someone had asked her a question about communication and she shared that when she was a young child, she knew what she wanted to say in her mind. She even had the exact words that she wanted to say, but couldn't physically get them out of her mouth. Imagine how incredibly frustrating that would be. I know that I would become angry if I were in that situation - wouldn't you? I have to wonder whether Jake is experiencing the same thing and is physically acting out of frustration. Perhaps he is acting out to get some sort of sense of control?
I also have read (I
can't remember which autism related book it was now) that
"whenever in doubt, presume intelligence." This means to always give
child the benefit of the doubt that he/she understands what's going on
and what we are saying. This is also why it's so important to not speak
about your child and autism issues within his presence, as if
he is not there. This is something that Alex and I are consciously working
on and we'll catch one another if we do this.
This brings me to the point that I had found myself in yesterday afternoon,
after picking Jake up from his new summer program:
I am frustrated. I am frustrated and tired. I am tired of being frustrated. I am frustrated and tired of going through the autism roller coaster of cyclical behaviors. Right now Jake is into hitting and kicking and that's been going on for several months now. It's completely ironic that my mild-mannered, sweet loving and gentle son is expressing his frustrations through hitting and kicking - but nonetheless, here we are.
It feels like some sort of developmental milestone. It's like going through the "terrible two's," but we are six and a half years old, and weigh about 60 pounds. In fact, it's Alex's theory that since Jake is developmentally delayed, that he's actually going through his "terrible two's" now; close to the age of seven. Could this actually be a plausible theory? It does make total sense to me. The frustration that he's exhibiting, probably due to his speech delay/lack of speech, and not being able to quickly express his needs and thoughts verbally, is causing him to act out physically. It also feels like an impulsive response to anything displeasing to him.
It is not easy to watch for me, and it is also the kind of behavior that doesn't get defused overnight; we've been dealing with this for several months now. At first, it was just mostly during ABA therapy, but now that he started a summer camp program, these behaviors manifested themselves right away. Once again, I am frustrated that I don't have the right answers and I don't know what to do. So here I am, frustrated on many levels - including being frustrated for him, on his behalf, that he's not able to express himself in a socially acceptable way right now.
I am worried that this behavior is not getting defused quickly enough and may be becoming his new norm for the time being. I worry that if this doesn't get defused soon, that he may get kicked out of his summer program. This is stressful for me because it means that the program failed to address this correctly, and it also means that I have less time to get things done at home, and have some time to myself.
My plan of attack is to come and be there with him during his program, observe his behavior and also see if my presence brings him some comfort. Maybe this would help him settle in more easily to his new environment. We will also have our BCBA (Board Certified Behavior Analyst - who works weekly with ABA therapy with Jake) come and discreetly observe him and see if he can give me and the teachers some feedback.
Now for some of the positive things that happened this week
1 - Jake started saying "Mommy" at the beginnings of his requests, and not just asking for things without calling me anything.
2 - When we were playing around he looked at me with a loving smile and said "I love you" all on his own. This was non-prompted, which opened up the flood gates to at least ten more I love you's from him.
3 - He is now able to read 5-6 sight words in a row, when last week it was challenging for him.
There is definitely some growing that is taking place right now. We tend to observe it with Jake in spurts and it's consistent with a pattern of two steps forward - one step back. There are always back steps in his growing and learning process, but he keeps on consistently moving forward and developing in this type of progression. While some things, like the undesired behaviors of kicking and hitting, are not pleasant and take a lot of persistence and work to defuse, other things, such as the positives that I reference above, are incredibly encouraging. They bring me hope of what is still yet to come from this beautiful son of mine. I am so thankful for those moments that take our breath away. These moments are those times in our lives which inspire us to keep keeping on. These moments inspire me to keep loving as much as humanly possible and to stay the course, one step at a time.