Confessions

This post isn’t really about Little Bug or ASD, although they are featured heavily. It isn’t about getting suggestions or brainstorming, although that is always helpful. It isn’t about health insurance or co-pays, although they are a part of it. It is simply about some things I struggle with and wanted to get out.

Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.

Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-

Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?

Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.

Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.

Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?

Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.

Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.

What do you realize?