I can't sleep. I'm missing my boy.
I was listening to Christmas music today and was reminded of a special song I used to sing to him.
We spent a lot of time doing sensory things together, like swinging outside and using the sensory ball. I would sing to him. For fun, I put his name into songs he liked. I don't know if anyone else knows I did that. It was kind of our special thing.
I can't say that I know what it's like to lose a child. I'm sure my sorrow in having to move away after five years is but a fraction of that pain.
Most days, I try not to think about it. I need to live in the present and be here for my family. My boys need me now, and I wasn't there for them like I should have been when I was working as an aide full-time.
The terrific thing about being an aide that I especially liked was leaving my life at the door. I could walk into the school, and tell myself I needed to focus on my student. I didn't think about bills, or grocery shopping, or what I needed to do after work. It was all about him.
I wanted to give him my full attention so I could understand his non-verbal communications. I wanted him to know my focus was on him.
Kids with autism are smart. They know when you are busy chatting or distracted by a task....and they see it as an opportunity to get away with something. Maybe not all kids....but this kid did that for sure. If he thought I was distracted his behavior would change. He would try to get into things he knew he shouldn't. You had to give the little munchkin credit....he was good!
The time I miss the most was our sensory room time together.
When I took over for his aide when he was in kinder garden, he had a lot of sensory room time. He loved to lay back on a large sensory ball, and with you sitting opposite him, he would put his legs up on your lap so you could push on his chest and bounce him. He LOVED it.
We spent a lot of scheduled time in there alone. The aide told me she got too tired of bouncing him, so she would shut him in the room and just peek at him through the window...sometimes for 45 minutes at a time, while he wandered around the room on his tip toes.
I wanted to use the time more productively. I understood his need for the sensory input/output to help him cope with the tasks set before him at school. Some days my arms would ache after bouncing him so long....but this wasn't about me.
I'd sing him songs. I'd listen to him make sounds. If he made a sound repeatedly, I would sing a song that seemed to match what he was doing.
Soon, I was able to stop bouncing him and wait. Wait in the quiet room, with no sound and no distractions....wait patiently....and he would request a song. Oh how his face would light up with the biggest grin and giggle! We were communicating! We were playing together! It was pure joy!
While it lasted....
Who knows how far we could have gone? How many more words or phrases we could have shared? How many others would he have transferred this knowledge to?
That's the sad part of being an aide. You don't have the final say.
You take direction from the speech therapist, the occupational therapist, possible the physical therapist and the special ed teacher. You do as they say. They make the rules and plan your day (for the most part.)
Someone decided he shouldn't be spending all his time bouncing on the ball. He needed to choose other things to do in the sensory room, like bounce on the trampoline.
It didn't make sense to me. First of all, if it's his sensory time, how can we tell him how to use it? I mean, what fills a sensory void for some won't work for others. Not to mention all of our work towards verbalization was put to a screeching halt.
What I have to remember is, things have changed in special education. Because of budget cuts, they are moving away from one-on-one aides. There are too many kids with severe needs, and even if I was there, I would not be able to teach him the way I believe is best for him.
I am sad because I wish I could do more. I know he is capable of more progress. But by the time these kids get to Middle School, they are so far from their peers, they are basically "contained" for the day. Less and less effort is put into teaching them....they are just there. They are fed and bathroomed. If there behavior is good, they spend a lot of time waiting while the staff takes care of the one's who are difficult.
So sad.
Not right.
Helpless.
I miss my boy.
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