I didn't have any spare time last week to blog. Today I don't have any free time, either, but I am doing the lazy mommy thing and employing Mickey, Minnie, et al to babysit the boys for twenty minutes to vent some more.
Today I got some papers for Older Son that really pissed me off. I'll have to back up a little bit to explain everything, so please bear with me:
The reason we had gone up to Shrewsbury on the 9th was to visit with Older Son's pediatrician for the next visit on the docket. I knew that as soon as I told him we had moved, he was going to say he couldn't help us anymore, and that's exactly what he did. Two other specialists were in the room with him, and none of them seemed surprised that I was getting the run around from NHS as far as getting speech therapy for Older Son. It seems that the speech therapist's report had not reached him as well. Must be something wrong with the fax machine at the speech and language department in Shrewsbury.....or with the person running it....They ended up just giving me some advice on how to deal with the NHS that I've heard before, up to and including the old "make sure any requests are in writing" line. I remember doing that with the parents of my students in California when they needed help, although we weren't supposed to tell the parents that key piece of information. It seems to be an open secret in the health and education departments on both sides of the pond: imagine that scene from The Incredibles in the insurance office, "What I'm NOT going to tell you is to NOT take the PINK form and go to the SECOND FLOOR, and do NOT go to room 3A to file it THERE...." Except its more like, "What we're NOT going to tell you is that you need to MAIL a copy to the department that is NOT signature required, and DON'T under ANY CIRCUMSTANCES make sure that its DATED FOR CHRIST'S SAKE, and PLEASE DON'T EVER keep a copy for your own file...." So, I thought it was a rather large waste of time and money, but I also wanted to make sure that the pediatrician sent all of the files to the GP we will have here in Worcester Park, and since papers seem to have a life of their own here, I asked him to make a copy of EVERYTHING that was in the file he was holding on Older Son.
Well, I got that file today, and my worst suspicions about what diagnosis the pediatrician was angling for were proven true: all those questions about whether Older Son needed to have routine, did he get upset with any change in routine....questions that I answered with no, and that he seems to be adapting very well to a major change in home and school, were put on file as that he does have trouble with change of any kind, and that I was agreeing with the pediatrician that Older Son should be investigated for possible ASD: Autism Spectrum Disorder. This is the first time that phrase has ever been associated with Older Son on file. I am planning on writing over this report in red ink every point that this doctor misrepresented me. I shouldn't be surprised. Really, I shouldn't. Everyone has been telling me that Autism is the umbrella term used in the UK for every kind of learning disability. Still, it hurts.
I keep thinking of something my sister said to me about having a child with a disability: that even though you love your child, you also mourn for the child he might have been. Its times like this that I mourn the child who would be talking with me and having conversations. A child who I wouldn't worry about being picked on for not being able to communicate. A child others wouldn't be trying to label as autistic. I know that compared to many other parents I have nothing to complain about. Older Son is healthy and happy and will improve in time. He's been improving just this past month with one of his jumps in communication. I am grateful for everything I have. I just need to have a cry once in a while, and then, as one of my friends once said, put on my big-girl knickers and keep on fighting.
An interesting side note: I got a call today back from the speech therapist who did the report for Older Son in Shrewsbury! Will wonders never cease! I was also surprised to hear her offended tone when I said that her report never reached the Kingston speech and language department or the pediatrician....It wasn't like I was blaming HER, just her secretary.....so, she's going to ask that same inept paper pusher to re-send the report to Kingston via the fax number I gave her and in attention to the person I finally had gotten a hold of there two weeks ago. I then called Kingston, again, and left a message, again, telling them to expect this fax.
Hope springs eternal.
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