Please excuse my absence here, but as you will see, we have been going through a rather stressful time of late.
You may recall that one of my earlier posts was how we came to discover that Boy-Boy has a significant hearing loss. This has, as you may imagine, posed some difficulties to us as a family. These are however, challenges which I believe Team Fun has embraced and, I can honestly say that have0 added an extra richness to our lives. It seems though that we are to have even greater wealth added to our day-to-day existence.
About five months ago, Boy-Boy’s speech language therapist (SLT), noticed that the way he is learning to communicate is markedly different from his hearing impaired peers. Quite how it is different I am not certain, but what I can tell you is that he has learnt whole sentences, even copying the intonation as he has heard it. I didn’t think that this would necessarily be a bad thing, but the difficulty is, that he is only able to give prescribed responses to particular questions. An example which springs to mind is that when say to him “How are you?”, he will reply “ Yes, I’m fine.” However if you were to say “How are you feeling?” he wouldn’t know how to respond, and would most likely repeat your question back to you.
“Oh well,” I thought,” there are worse things in the world”, but this was just the tip of the iceberg. He is very obsessive particularly about letters, colours and shapes, and has on more than one occasion told me that I am not drawing a diamond, but a rhombus. I may have mentioned that he has quietly taught himself to read. He doesn’t seem to have a great deal of comprehension about what he has read though, in fact he takes a similar attitude to reading, as I do to eating; books are meant to be devoured not really enjoyed.
Having listened to the SLT, Mrs L. and I arrived at our own conclusions and started doing some research on Asperger’s syndrome, and more Autism.
It immediately became apparent, that here in New Zealand, at least, there is no distinction between Asperger’s and Autism, but they are now both covered under the broader term Autistic Spectrum Disorder (ASD).
We were referred to see a paediatrician who after initially seeing us, recommended that we see him again in three months. He said, that often a diagnosis is sort of made by committee and so he wanted to gather as much information as possible. That second appointment was last Friday, and he told us that Boy-Boy does feature on the Autistic Spectrum.
Although I had assumed as much, this news still came as a tremendous blow to me. I had desperately been hoping that I had been given two and two, and somehow reached five. Immediately after the appointment, we went to the golden arches for a debrief, and I just wanted to cry. I was so upset that I didn’t enjoy my lime milkshake anywhere near as much as usual. I didn’t even notice that it was actually a hot chocolate!
When I actually thought about it though, I realised that my tears were selfish. Although I was upset for Boy-Boy, I was more upset for me.
He is a very, very bright boy. I don’t know of any other three year olds who have taught themselves to read, or rudimentary maths, or the difference between a nonagon and a decagon (he does), and it is with this in mind that Mrs L. and I sought the advice of medical professionals. I sincerely believe that he is a very special boy, and that given the right tools, he has the ability to achieve something truly spectacular. But we have to know what those tools are, and where to access them. Now that journey has begun we can help him to realise his potential.
I must make it clear, that this doesn’t affect how I feel about my son. I certainly don’t love him any less. Or perhaps it does, I may love him even more fiercely, as I know that his life maybe more difficult than would otherwise be the case.
Before causing outrage amongst other parents of children with ASD. I must make two things clear.
First, Boy-Boy is very definitely at the high functioning end of the spectrum, and is not as profoundly affected as some other autistic children (or adults).
Secondly, if I do or have put my foot in my mouth, I apologise. This is very new for us and we are still trying to work out what is what.
I feel immensely privileged to have him in my life, but the weight of responsibility is heavy on my shoulders. Usually I am a “glass half full” kind of a guy, and after some consideration, have decided that I will continue to be. How could I not be when I could be the father of the next Isaac Newton!