Over the years I’ve had the privilege of meeting many parents with children who are somewhere on the spectrum. And in that time, I have had a fair few conversations with them where I had agreed that, indeed, Elliot appeared to have many traits in common with their child but that was more down to his rather quirky personality rather than the fact that his brain was wired differently. You would have thought, being relatively more informed than the average human being about a vast array of conditions and syndromes that my brain would have been screaming at me to suspect that perhaps it was more than a coincidence. Apparently my conscious brain was out for a long lunch though.
On Saturday 13th April 2013 I will be celebrating Undiagnosed Children’s Awareness Day, probably at home, perhaps with an acquired bit of Easter chocolate, but undoubtedly with a huge sense of pride. I guess I don’t talk that much about Dominic (and of course Elliot and Lilia as we know they have a milder form)
Yes it is devastating to hear the doctors tell you that your child has a syndrome, a disease, an illness, but, believe it or not, for some it comes as a relief after a long journey where not knowing has been far harder. A diagnosis, especially for parents who were unaware that there was a problem, can change a family’s hopes, expectations and goals in an instant. With a simple word, parents become part of a community of people who have had the same conversation with their child’s doctor. A diagnosis makes you have a connection, it gives you a reference point, a place to start. You get handed a name of a ‘thing’ to fight, hell if nothing else at least it gives you a neat summary to stick on the endless forms you have to fill in.