I’ve been thinking what I can write about that would be helpful for people to read. I think the hardest part for me was the process of diagnosis so I thought I’d write about that. You are not alone.
Like every mother or father has a birth story every parent with special needs has a diagnosis story. Whether it’s a shock or an explanation of a nagging feeling or something devastating, it is life changing for all involved.
For me with R I have to say it was a shock, I hadn’t even considered there was an issue. She was my first and I wasn’t working so therefore had my full attention. I used to be amazed at how much information she absorbed and was so proud (still am obviously) of how bright she was/is. The preschool flagged it up and I will forever be grateful for there support and understanding. They said she wasn’t socialising and couldn’t settle at a table activity, she just wanted to walk around the room. I remember Buzz and I discussing it and we said it was because she was bored and we shouldn’t worry to much. Maybe we could sort it out at home? I didn’t even consider autism . She was referred to a paediatrician.
I remember the paediatrician playing with R and asking us questions about socialising and whether she liked cars (she did) and whether she lined them up (she didn’t) the word autism wasn’t mentioned but I knew what they were thinking. I came out and said to Buzz “they’re trying to make out she’s got autism”. We both thought they were wrong but I remember feeling angry that they’d think that, but also scared that they were right. Denial I think is a common reaction, because we’re human and we don’t want there to be anything wrong.
R was then referred to a child development centre, where warm, friendly, caring staff assessed her and came to the conclusion that she had Asperger’s.
We were gutted. Our beautiful, bright, shining girl had a label and it’s one that I didn’t want. She was still the same child as before the label, but I knew that her life would be harder and I didn’t want her life to be hard. My role was to help her breeze through life and I’d failed at the first hurdle. I also blamed myself, I still do deep down, she was very premature and I felt I hadn’t grown her properly. You had one job Nai!
During the time R was at the child development centre O was born, he again was very premature. Once R had the diagnosis of autism we were obviously worried that he might have it too but were reassured that it was very rare for siblings to both have it. I’ve since discovered that this isn’t strictly true and actually more common than I was lead to believe. I’ve put it down to positive thinking and a fingers crossed mentality on there part.
We were hyper aware of O’s development. It started very positively lots of eye contact and smiles. I’d been reading up slot about signs to look out for and nothing concerned me. We dared to feel positive.
His crawling and walking was delayed which rang a few alarm bells and his speech was very slow although he could say the name of his bear, Spencer and number 6 when we counted. His health visitor again a wonderful, helpful lady was concerned about his development as he wasn’t hitting the spot on her check list and he was referred to the child development centre. Great.
By the time they had finished assessing him he had slowed down developmentally, it was almost as if once he could walk his brain said that’s enough now I don’t need to do anymore. He stopped saying Spencer and he stopped saying 6. In fact he wasn’t very vocal at all. He wouldn’t build blocks with the other children he had no concept of making a tower. He still doesn’t. There were other tests they did but that’s the only one that sticks in my head.
He was diagnosed with chronic developmental delay and later when he attended primary school he was diagnosed with autism too.
Another label that I didn’t want.
A label that has enabled them both to get the help they need though.
We were devastated when we realised O had special needs as well. It’s almost like grief. Grieving for the life that he couldn’t have. His needs are so much more severe than R’s. She will hopefully be able to go to college get a job have relationships and achieve some level of independence where as O will always be vulnerable which to be honest scares the shit out of me.
With both of them I feel guilt as they were so premature but with O even more so as I think that the birth process (I’ll spare you the details) caused some damage in the development of his brain.
If I could I’d take there needs away in a heartbeat, this isn’t what I want for either of them.
Being a teenager with autism is horrible and heartbreaking to watch. All I can do is make her feel loved and safe and teach her about life as much as I can. For me I miss the life that O won’t have, relationships, independence, understanding of the world.
They are loved more than words can say I hope they know that.