It is a very rare occasion in my house that all three children are sleeping. It's happening right now. Although there are dishes in the sink, laundry waiting for me, and calls that need to be made, I'm not doing that.
I need to write about Wednesday morning.
My family is moving soon. We close on our first house next month. We made the decision that having a home, a yard, etc was important right now, and we made it happen. There is of course some guilt that's come along with that. We know we can't afford much for Riley, in fact we may be able to afford less. But this was a decision we needed to make nonetheless.
With buying this house has come thoughts about the future. There have been hard thoughts about Riley living with us as an adult. There have been thoughts about how we'll keep him from going out the front door into traffic (it's on a moderately heavy traffic street near a school) I'm thinking about what the next year may be like for us. I see Riley in school and having full time therapy. I also have been making plans for our middle son to go to preschool.
When planning things for Jack, it's very surreal. I went to check out this preschool on Wednesday morning, right near our new house. I visited with a teacher and started to ask about snack, realizing "I don't have to think about snack. He can eat what they have." I watched the kids play and I liked the atmosphere. Then, circle time started. All of the kids found their piece of carpet. They did the month, the day, the weather. I was thinking how long of an attention span a kid would need to have for that. But we're talking about Jack. So he could do it. And I thought about how quiet the kids were. But we're talking about Jack. So he could do it.
Their teacher then started bringing out things for show and tell. Each kid went up and told the story about what they had brought:
"This is my dinosaur visor. I got it from my Grandma. I really like to wear it."
"This is my little doggie I got for Valentine's Day. It has hearts on it. Because hearts mean love and love is for Valentine's Day."
"This is my kazoo. I can make music with it."
In the midst of another child starting to tell a story about their item... BAM. POW. Someone punched me in the gut. The wind was knocked out of me. I couldn't breathe. Tears started to well up in my eyes and I thought I might make an audible noise.
These kids were Riley's age. This is what Riley was supposed to be like.
Oh, the pain. Physical, wrenching pain. I can't even put it into words.
The worst part about this is that I had a morning planned with my mom, to go see our new house and shop for curtains. I could barely get through the house showing without crying. At one point our real estate agent went to answer a call and I told my mom what had just happened. She knew. She totally knew what I was feeling.
As time is going on, these feelings are happening more and more. I think because now I have a neurotypical child, almost as though I have my first born. I don't know what to expect out of things. I can't believe I can just pick a preschool and decide whether I like it or not, not whether they can accommodate special needs. I don't have a clue how to discipline a neurotypical child. I also have no idea how to potty train him. These are things I feel like I should know, since he's my second child. I suppose I am just now realizing how far behind Riley really is.
I've been reading a lot lately. Right now I'm reading "Look Me in the Eye" and I really want to start reading more about the life of people with autism. When a year ago I was still now allowing myself to think about this being life-long for him, now I definitely am. I'm starting to wonder if it's worth continuing biomedical. I'm starting to wonder if we made a mistake by starting biomedical and not paying for therapy instead. I stop myself when realizing how far he's come, but nothing is an easy fix. This is a battle that will rage on for years to come. The thought of it is absolutelly exhausting.
I am so ready for him to start full time therapy. It should be very soon, we joke probably when we are moving we will get the call. School has been very good for him, but it's just not enough. He needs this therapy.
My beautiful baby boy. I feel like so much of him is lost in there. I wish I knew how to get him out. I wish I knew. I want him to tell me about things, I want that show and tell. So bad.
