A couple of weeks ago I took my A4 sheet of paper full of the concerns I have for P1, along with P1 and Hubby to a paediatric appointment. This was our referral appointment following the visit to the GP and it happened much sooner than we expected. It was such an important appointment and I felt so sick with nerves. I needed to get it right, I needed to remember absolutely everything because I needed to be listened to, finally.
Thankfully I was and the paediatrician agreed that it sounded very much like my daughter has ASD (autism spectrum disorder). At that specific moment I felt a sigh of relief, like the huge bag of rocks I’d been carrying on my back for 7 years had been instantly lifted. We were handed a thick wad of forms for fill out and send back. I felt happy with the appointment and it was that step in the right direction that I’ve wanted for a long time.
Sitting down to fill in the forms was when everything sort of hit me and I’ve felt really heavy hearted since. Every time I look at my beautiful girl I feel sad. I didn’t expect my own parenting journey to be this way and all I have ever wanted for all my girls is to be happy. I honestly don’t feel like P1 is most days and that’s upsetting. I blamed myself because of the way we react to her each and every day.
Being seven years old, we expected her to be a certain way, to behave a certain way and to think a certain way. She’s our eldest and with that comes responsibilities. Naturally she’s the role model for her younger sisters so when she’s misbehaving, being rude, lashing out and getting angry, it upsets me and angers me. I have expectations of her that she cannot fulfill. Not because she’s a naughty girl but because she’s mentally can’t understand things like “normal” children.
Despite really pushing for extra help and a diagnosis for P1, autism is actually so alien to me. I didn’t know anything about it except that it sort of meant she was different and there was a reason for her lack of understanding. It’s not because she hates us and her life. I hope anyway. Since filling in those forms I have spent many hours researching ASD trying to understand just what my baby is going through in her brain.
She’s special and for the first time ever I think I can finally see that. That doesn’t make things easier, in fact I’m struggling even more than ever as I adjust the way I discipline and the way we talk to her. All I want is for her to have the best childhood and life that she can. I am the only one who can give that to her and I need to step up and be the person she will always rely on.
We have a very long journey ahead of us and I will of course be updating my blog as and when. I would really appreciate hearing from anyone with experience of a child with ASD and of course words of encouragement.