I’m moody today . . . I’ll admit that right up front.
I was reading an editorial in the local newspaper related to the Emily Perl Kingsley Holland piece (about how having a special needs kid is like going to Holland when you planned to go to Italy – beautiful, but not what you planned). The editorial said that one of the worst things for parents was the way other people look at them and their child with disabilities.
Before that I was talking to a friend about some concerns with our current speech therapy and feeling like I need to take on more responsibility for helping Thane . . . but it seems like such a foreign language with things like “voiceless fricatives” which sound rather like cursing underneath one’s breath. Funny how I wouldn’t mind doing some of that right about now!
Prior to that phone call, we had an afternoon home visit for developmental therapy where we discussed social stories. I wrote a little book about Thane and his allergies to try to help other children understand that Thane can’t eat many – most – of the foods they eat and illustrated it with photos of Thane. I was told at the time that it was a great social story. But today I learned rules of writing social stories and by that person’s rules, mine was awful. The formula sounds so foreign to me and I now understand why it took the therapist a week or two to write this story. And now I feel like I need to go searching out guidelines, probably another book to buy and never really get to read . . .
Unless I go to that conference on using the picture exchange system in Bangor for two days in July – that I was only told about after I would have to pay the higher late registration fee -- and sit in a hotel room and read all night. I am just too antisocial to do something like that right now. And where would I stash the kids?
So how does this all relate to the article? Well, people seem to think it is fine to stare at you like you’ve raised your child in a barn, or even comment on him being a “bad pirate” . . . and it really feels like people think that the parent is at fault. I don’t think that is just my own insecurity because the editorial mentions other parents who feel the same way, and I read it all the time on the various listservs I’m on.
But does anyone really get it? First, I am dealing with a little person who has so many obstacles in front of him that it can hurt to think about it. He has an immune deficiency. He needs a special diet. Some of his motor planning needs to be learned because it isn’t wired properly. He processes a light touch as pain and a firm touch as a tickle. It’s easy to see why lots of us make no sense to him because it is kind of hard to put myself in his place and I am an adult with pretty good empathy skills.
Now I am supposed to be speech therapist (I hate seeing that word as my mind often separates it into “the rapist” – how’s that for awful?!?), occupational therapist, developmental therapist, learn all of these different languages of vexing vestibular input and frigging fricatives . . . this afternoon I felt like I was tired and I realized I really didn’t have a physical right to be. I slept well for two nights in a row. So did Thane. It has been months since that has happened so I am more rested than usual. It’s the mental strain of having too much to learn, process, implement, etc.
Plus I seem to take really lousy care of myself. For the second day in a row I actually remembered to take my insulin with me when I left the house, only to forget to take it while I was out anyway. I tried to move back to oral diabetes medication but I felt dizzy, nauseas and started getting edema in my feet . . . I wanted to do this so I could move off insulin and the scenario of forgetting it would be a thing of the past. Nope. I have a lousy track record with meds, but I wasn’t expecting trouble as I have taken that one before.
I got “permission” from the doctor to switch the way I take one medication to split the pill, but when I do I forget half of it, so that’s not working out either. I used to be able to set a timer on my watch and remind myself to take stuff – now I am likely to just swat the alarm and go back to whatever I was doing.
I wonder what the point of all these special therapists and such is if most of it is really up to me anyway. So far I feel like I am the one who explained how to calm him down. I am the one who thought of a way to entice him to try to draw purposefully. I’m the one who figured out that he responds well to puppets speaking to him. I figured out how to get him dressed without a battle. Dave figured out how to brush his teeth without the battle. Is all the effort taking him places just sapping energy that could be better expended one-on-one Thane and I? Probably not, but it does sure seem like it would be easier for me!
To be fair, I do get good information from the therapists, but it still just feels like a lot on my shoulders and some days I would really prefer to just stay home because I really have no energy left by the time we get home.
Obviously this adorable face is worth all the effort.