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Finding out that your child has autism
When I was pregnant with our second child I said that as long as the baby was healthy, I didn't care which sex it was. Our first child had spent six long weeks in the neonatal unit and I didn't want to go through that trauma again. The thought of disability barely crossed my mind. After all I'd had tests for Down's syndrome and I knew my risk was low. The birth was natural and uncomplicated and I felt on a high.
But things changed.
I wasn't a first time mum and as my son grew I felt increasingly uneasy, but couldn't initially work out why. By the time he was twenty months I was asking for a referral to a speech and language therapist as his early babbling had stopped and he didn't seem to understand a word we said. He didn't even respond to his name. This, together with some difficult behaviour, led me to fear that he might have autism.
By the age of two he entered the health system to be investigated. In the United Kingdom this normally takes place through the National Health Service. There were lots of questions. It became clearer by the day that he had a learning disability, but did he have autism too?
I read and read. I frightened myself by what I read but I clung on to the hope that he might not have autism. I still thought that his learning might catch up by the time he started school. Yet at the same time I desperately wanted to get a diagnosis so we could look for the appropriate education and therapy for him.
When he was three we finally got the diagnosis of autism. And although I knew - had known in the bottom of my heart since he was a baby - I ran out of the room in floods of tears. Because learning that your child has a disability is the start of a grieving process for the child you once thought you would have.
For some parents that grieving process begins early, when a disability is visible from the first days of a baby's life. For others, like us, the knowledge that something's wrong creeps up slowly, over months and years. But that doesn't make it any easier when you find out for certain. At that point, real life or online contact with other parents in a similar situation is invaluable.
Shared knowledge is empowering. It enables us to gradually educate ourselves, to become the advocates our vulnerable kids need. Every parent of a child with a disability will continue to have ups and downs, but we're a pretty strong and stroppy bunch and we support each other. We stand together, we fight together and our kids are better off for that.
Nothing lessens the pain of the initial diagnosis, but finding support helps us face the future.
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Wed Aug 17, 2011 - 11:14 am
Ah yes, Welcome to Holland. That's a piece which divides parents. I totally get it, but many parents don't really ever get to that level of acceptance. There was in fact a response piece, Welcome to Beirut, written back when Beirut was a city being torn apart by war!Reply -
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Wed Aug 17, 2011 - 10:42 am
Very honest article - and so glad to hear that the online community has been such a help. Your phrase "learning that your child has a disability is the start of a grieving process for the child you once thought you would have" reminded me of that lovely essay by Emily Kingsley called "Welcome to Holland" http://en.wikipedia.org/wiki/Welcome_to_HollandReply
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