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Thursday, July 12, 2012

Autism, first contact

"I'M ANGRY!" As I looked into to J's clear tear filled frustrated gaze this morning I can't say I was exactly feeling compassion. I was feeling aggravation. I TRY to remember to only praise the positive behavior, "good turn taking, that's wonderful shooting". This is our third session trying to teach him how to play Wii (games my five year old can navigate with ease). Each session is like nails on a chalk board. He doesn't want to try. He just doesn't have the dexterity most kids have or the language to express his frustration and he knows it. It's constant hand over hand trying to teach him to use the remote and no matter who you are in this equation it's a grating experience.

Suddenly he turns to me, shrieks something incoherent and throws the Wii remote at my face. I close my eyes and the pain sears through my right cheek bone and upper eye socket corner. Without my glasses I'm sure I'd be blind at this point. I can feel J's therapist waiting, waiting to see if I'm okay, waiting to see if I react correctly, waiting to see his response, maybe waiting for all of the above. I don't know. I pause long enough to explore my injury and formulate a reasonable response. I was having the shittiest Twix moment ever. I grab him before he can retreat. I force him to apologize and ask him if that was a nice choice or a mean choice. When he half coughs/sputters out "mean choice" I make him kiss where the blow landed. I tell him he needs to go to his room and he runs there screaming the whole way. After he closes the door you can hear random bangs and shrieks.

J's therapist and I then discuss the game choice, how the game we've chosen may be to complex. She thinks the game has too much to process. We also need to work out a turn taking system, instead of having his brother peer model. Suddenly she asked me, "are you ok?" The pain had already subsided, for a second I didn't even understand the question because I'd been so focused on the video game selection until she said "do you want to put some ice on that?"  What did linger  on was my embarrassment. I wonder, did I do the right thing? I'm ashamed that I cannot stop my child from hitting me, that I can't even control his behavior to that simple degree. J's therapist suggests we go to the church early today and I could've hugged her.

In all fairness it has been a long summer. Every week something has happened to wrench J's schedule out of check. My hubby had dental surgery, his therapist(s) (as in more than one) got some awful flu bug, tropical storm Debbie and then the fourth (both boys stayed up after ten thirty which is nearly biblical in our home). So literally every week of summer he's had a few days off from his regular schedule not including him not being in school. This week had been particularly hard. We had his last chelation and his regular IVIG in one week. We'd finally finished testing his food allergies which he seemed to be having a very OBVIOUS and negative reaction too. I got really sick Monday, things had just been hard. So today driving to the church I really just wanted to have a good cry. That Wii remote may have been the straw that broke the camels face.

she looked a lot like this.

I pulled up to the church and pulled myself together. As we unloaded J's therapy materials another church patron came in the doors behind us. She looked like a church lady, hair thinning but immaculate, not sweating in the ninety degree heat and one hundred percent humidity, well matching pants suit, home made lace bible cover and books in tow. She calls out to us and pushes her way into the church behind me, "is the pastor in here? I thought I saw his truck". I say "no he's not here". She walks back out to check the parking lot. "Are you doing something with Autism? My grandson is being tested for that. I just noticed your bumper sticker" She says. J's therapist politely redirects her, "mam this is a private session". I walk her out and pull my boots up to my but crack once again to give her what help I can, but today is really the wrong day.  Why do I have to be the Autism first contact, TODAY of all days?

She tells me her grandson needs to having his hearing tested and then he's going to all children's to be tested for Autism, boy if that doesn't ring a bell. I wonder how many providers KNOW when they are sending these children in for "hearing testing" that they dam well have Autism? I ask her a few basic questions. "How old is he, is he verbal"? She answers "he isn't really verbal, at least not in a way that makes sense, if that makes sense". I say "yes, it really does". We talk about parent acceptance and how hard it can be. We talk briefly about the medical side of Autism, mostly gut dysfunction. Surprise, surprise her grandson has horribly runny diapers.

She asked me the one million dollar question (yep that's rhetorical, I'm sure Autism costs go in to the tens of billions or hundreds of billions of dollars these days) what is the connection between Autism and vaccines. Personally I want people to make up their own minds. I explain the two basic schools of thinking and hope with common sense people will come to the right conclusion. Toxins being injected into babies is bad, MMMMM kay. She asks me, "what's in a vaccine?" I gave a few of the more horrible ingredients that I could remember off the top of my head and told to google vaccine ingredients and that would answer her question. We also talked about the number of shots given to children today and how Autism has drastically increased in proportion to the vaccines.

I wrote down my name, cell phone and email address. I told her her daughter could call me whenever, anytime. I told her about the local support group. I gave her some information about the upcoming evals, who should be there and why. I also told her about other local resources to help with early intervention and therapy. Interestingly she seemed so happy to meet me and of course told me that "they (children with Autism) were all gifts from god" and that "she was thankful for people like me who have done this before". I could only say back "it's a challenge, that's for sure". I understand the sentiment and I'm not one to strike out at well mannered church ladies but realistically she has no idea what her daughter is in for. Today, like so many days recently was not the day for sugar coating. I told her that I would pray for her family. I would pray that it wasn't Autism. She gave me at least two hugs and her perfume lingered on me well into the afternoon.

When I go to bed tonight I'm going to pray to NEVER hear from her daughter. 

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