Monday 7 May 2012

Finding Support

One of the hardest things about having a child who is waiting on a diagnosis of ASD is finding people who truely understand. Over the last few weeks I have started to find support and people who understand what we are going through. Forums, facebook and twitter some of my favourite places online. I am lucky to have some very understanding friends who don't mind that I talk about Autism far too much but others I am sure must be bored to death of hearing about it (more fool them). However to talk to people that have been through/ are going through the diagnosis process is the greatest support I could find. They help me through the hard times with their stories of coming out of the other side and advise on how to get there myself. They also share the happy times. Those little triumphs that others do not quite understand.
This week I found a local support group that meets once a month. I don't like doing new things and despite being very nervous went along and met some lovely people and will definitely be going back.
S got invited to soft play by a friend this week. It was nice to talk to the friends parents as they understand S's quirks from having a child on the spectrum themselves. Also from speaking to them and S being the only friend invited I have realised that she may have actually be started to form a friendship.

This week I have also started to notice steam engines becoming a little more than an interest to S. She just loves them. We took her for a ride on a steam train at easter and she loved it, she watched Thomas and the Magic Railroad on Netflix and she loves that too. She keeps asking to watch it and to go see 'steamies', it was heartbreaking to have to tell her a local steam rally was cancelled due to bad weather. It took over half an hour to get her out of bed that morning and the rest of the day was hard work with lots of meltdowns and she even forgot all about needing to empty her bladder she got so into watching a Thomas toy that evening. That same Thomas toy is now on it's 3rd lot of batteries she watched it for a total of over 2.5 hours Sunday! However it did provide me with video footage of verbal stimming and rocking that I feel may be helpful to show CAMHS when we finally get to see them.


In other news after speaking to @AspergerSadie on twitter about S's fear of hand dryers and being told how they really hurt the ears I decided to buy S some ear defenders. When we go out anywhere I have to look out for signs of S needing the toilet as she will not tell me for fear of having to go somewhere with hand dryers. She freaks out if she sees anyone else in there or if she hears someone flush the chain as she knows they will use them. We get in and out as fast as possible and use hand gel, as she reacts so violently to hand dryers. The ear defenders turned up Friday and we took them with us Saturday S walked into some public  toilets with them on. She didn't mention the hand dryers nor did she reacted to them going off, she even walked passed them while they were being used! I was hoping they would help but had no idea they would have that much of a positive effect. Highly recommend them! Such a small thing can make such a huge difference to my little girls life and finding those small things (with a little help from the growing support network around me) makes life that little bit easier.