If you have stumbled across our blog because you think your child may be autistic I want you to know that the way you are feeling now will improve. It will take time and I think a journey with autism will always be full of highs and lows but acceptance and even getting a diagnosis surprisingly does help.
Autism isn't the life expected or planed for but its the direction life has decided to take us in.
I have read many blogs and forums where mothers say they always knew that their child was special*. I had no idea but I also had no experience of autism and a very limited understanding. To me autism was always mentioned alongside the MMR injection and ironically I did look into getting Ethan's injections done separately. I do not believe that the MMR injection was the cause of Ethan's autism as I now know he was showing signs of autism before having his MMR.
Ethan was behind his peers with his development, something that I wasn't that worried about as I know that all children are different and develop in their own time. I now know that Ethan was showing two major red flags before his one year check, one was the fact that he wasn't sitting up on his own and the other was that he wasn't picking up any objects and putting them in his mouth.
Now you may ask yourselves why wasn't I concerned that my son wasn't doing these things and looking back I know I was because I asked, in passing really, my doctor and the health visitors about it, I stupidly thought that they would tell me if I should have any concerns. I also think that our health professionals weren't very approachable, they made me feel that any concerns I had where stupid ones and worrying over nothing. A fine example of this is when I couldn't breast feed Ethan, we had no problems doing it the problem was that Ethan didn't feed for long enough and when I spoke to the midwife about it I was told that I wasn't trying hard enough and was giving up too easily. I now know this can also be an autistic trait, obliviously too young to be picked up on, but if that lady had handled me better perhaps I wouldn't have thought my concerns where stupid and not important. I'm sure someone along the way put it into my head about not being one of those mothers that stress over everything, if only they could see us now.
Ethan actually had his one year check when he was just under nine months old. I told our health visitor about him not sitting up as she checked him over and she raised no concerns. She then produced a small blue block and put it in her hand and said he will pick this block up and put it in his mouth, I told her he wouldn't. Ethan didn't he just looked at it! At that point she should have seen these as red flags and referred us somewhere. Ethan still would have been too young to asses for autism but he would have been in the system. The heartbreaking thing is in his notes she wrote lovely thriving baby, no mention of the not sitting up or the not picking up the block.
I try not to get angry about this but I'm sure you can tell it upsets me. What I ask myself is do these people who we go to with our newborns not have enough training in the signs for special needs children? In America every child has the CHAT assessment done at 18 months, a test that originated from Cambridge University! When I took the CHAT test to our doctor she had not seen it before.
I also believe that the area that we were living in was too over populated and there isn't enough staff. Everyone is too overworked and busy to take notice of the little things. There is also a lot of pressure on quotas etc and at that time the government was having a healthy eating drive and the health vistor wrote down in Ethan's notes lots of information about his food habits. As I'm sure you are all aware that this is a nation wide problem and not just a problem for our area.
So what have I learnt from my experience of Ethan's one year check now that I have the benefit of hindsight.
We must fight for our children because no one else will.
All I know is weather it was down to lack of experience or incompetence Ethan was missed.
Fast forward to Ethan's two year check. At this point if I should have had any concerns it was the fact that Ethan was non verbal, but he wasn't just non verbal he didn't make any noise what-so-ever. Again I was obviously concerned as I was asking people about it in conversation but all children develop differently and I was telling myself he will talk when he is ready.
My mother-in-law was dropping hints to me asking if Ethan was deaf as she was already concerned that Ethan was showing signs of autism but there was no way she could just come out with that bombshell it was something we had to discover on our own. So I told our new health visitor of her concerns and she referred us for a hearing test and speech therapy. I do also think that autism may have crossed her mind because in her notes she wrote that Ethan makes good eye contact and shows affection something that you possibly wouldn't expect an autistic child to do, but she didn't mention anything to me.
When she left I decided to do a little web research. Now I had done this before but I never stumbled across the information I did that day. I put something along the lines of my two year old isn't talking and the search results come up with lots of references to autism.
The bottom fell out of my world!
My beautiful boy couldn't possibly be autistic. Autistic children don't like noise, make eye contact, like to be touched my list of what I thought autism was went on and on.
The more I panicked the more I searched the web. The penny finally dropped when I saw a video on you tube of another little boy 'playing' in the garden and looking at him I was watching Ethan. Little did I know that Ethan had so many autistic traits but it was just Ethan's way we never questioned it and that is the point that I felt sick to my stomach as I knew it was true and everything was starting to make perfect sense!
I immediately called Darren. I can't remember what he said or thought he just listened to me ramble on. I'm sure Darren must have done his own research as I can honestly say I don't remember Darren ever telling me my fears were silly or wrong so at least we have been on the same page from the start.
I have been through so many emotions since that day, anger, grief, guilt, fear the list goes on and on which I know its all part of the acceptance process.
Autism isn't Ethan, autism is just part of Ethan's personality. He is an amazing little boy with a fantastic nature and I wouldn't change him for the world...
*PLEASE NOTE I use the world special as I hate using the term different or even not normal as in every mothers eyes their child will always be perfect is just with autism they learn differently. Ethan will always be my special little boy.