On Monday we had a speech therapist from the Pediatric Autism Specialist Team (or something like that) come to informally observe Tyler at home. She was here for an hour and when she left my head was banging. Don't get me wrong she was a lovely lady and she really tried to point out all Tyler's positive behaviours, but this was almost a bit confusing. She was so positive that I was starting to think I'd got it all wrong and Tyler wasn't autistic. Then she told us that she was almost certain we would get his official diagnosis of Autism at our next assessment.
The next assessment will be in their clinic and will be carried out by two different specialists. They will then collate all the information gathered by everyone involved in Tyler's care and decide whether he is definitely on the Autism Spectrum. This should happen within the next six months and we will be told the same day we attend the clinic. This is going to sound really strange, but I don't think it's going to properly sink in with me until this appointment.
I know I'm writing this blog, I'm researching, I'm doing therapy and I'm trying to get my head around it, but it still feels like some big mistake. This isn't going to be like this forever. This is just some dream I'm going to wake up from; everything is just going to fall into place one day. If I go through all the motions and do everything I'm supposed to do then everything will be ok.
I haven't really cried about any of this until a few days ago. Up until then I'd been thinking quite selfishly about what this meant logistically for me. How was I going to cope with him? How was I going to get through this? Why us? Why my son? All this has made me angry, but like I said I've put my head down and done what I know I'm supposed to do. But a few days ago it really hit home what this was doing to him.
During a meltdown I looked past the flailing arms and the screaming and I looked into my little boy's beautiful blue eyes. The look of fear and despair I saw was horrible. Up until then I'd been so busy trying to get through every day that I hadn't thought about how hard he must be struggling to get through every day. I have been the biggest hypocrite. I've been trying to get other people to understand autism, but I haven't truly been understanding it. The biggest thing Tyler needs from me is not therapy, sensory toys or routines; he needs me to understand HIM not the condition!! Tyler is not his condition, I can't learn about him from the books or the internet. Tyler's autism is exactly that, Tyler's! It's unique because he is unique. The best way I can learn about Tyler's autism, is to learn about him FROM him.
Trying to empathise with him more is very emotional though. Thinking of how he must be feeling is terrible; it's so sad to think of how scared he must be at such a young age. I just want to take that fear from him and let him know that he's safe and is so loved. Unfortunately, he won't let me do that in the middle of a meltdown so all I can do is wait for him to stop and then give him all the cuddles possible.
Tonight I sat with him and stroked his head and held his hand until he fell asleep. He has tonsilitis again (we found out today he has to get his tonsils out) so he's been more clingy than normal and tonight was lovely just to sit and be able to comfort him. All I can hope is that moments like tonight will help him to understand that he isn't alone in this scary world and that he is loved and adored so much.