In December last year I took Child2 to Red Cross for a developmental assessment. When I first took him for Speech Therapy a few months earlier, the ST told me that she would recommend an assessment because more often than not, there was more to speech delays than meets the eye and she liked to rule everything out. Just in case. I told her that it’s fine. I figured that there was no harm and that I was paying good money in the form of tax which my kids also needed to benefit from at some point.
We got an appointment for the 2nd week in December after being on a waiting list for something like 7 months.
I very nearly didn’t take him that day. I felt that he was making significant strides with his speech. We’d also been to the OT a few weeks before that and had a plan going forward. I didn’t really think that it was necessary and I was very busy at work and I was feeling overwhelmed by everything that was happening during November and December. My DH insisted that I take him because we did wait long for the appointment and if there was any possibility that he needed to go for this assessment then we would probably have to wait for another year for a date if we wanted to avoid going privately.
That morning (as is our little tradition when we go for therapy) I took him for breakfast after dropping Child1 at school. I think he was having a mini growth-spurt right there because he ate like a pig! After this, we made our way to Red Cross.
He was seen by a Neuro-Paediatric Dr who observed him for maybe 40 minutes. She gave him puzzles to do which he managed really well. They went through books and he had to identify the objects in the book (he was 95% spot-on with this test) and she talked to him a bit. He didn’t really feel like talking back to her and I explained to her that he needs to trust her before he will entertain any form of conversation with her. I told her that he is just odd like that. She asked me loads of questions. About the birth (why do they ALWAYS ask about that?), about him, about his little habits and mannerisms etc. Etc.
She eventually concluded that he was Autistic. I had a mini freak-out there and then. I told her that she surely can’t observe him for 30 minutes and make a diagnosis like that. I told her that he can dress himself and is getting better and better at the independence thing and that he’s not like those Autistic kids in the movies who bang their heads and sit in a corner and are unresponsive.
I told her that he’d been diagnosed with SID a few weeks earlier and that I personally thought that she was confusing the two issues. Surely the OT would have mentioned/picked up Autism as opposed to SID? I don’t know anyone who is autistic or who has an autistic child. In hindsight, I realise that my comments to the Dr were coming from this context and that they were largely based on ignorance.
The Dr motivated her reasoning really well and she explained a little bit about Autism to me. Apparently there is a spectrum and some kids are at the top of the spectrum and some (like my Child2) are very high functioning. She was really kind and sensitive and told me to do some reading (she recommended me some good websites) and email her ANY questions that I had.
I walked away from that hospital fighting back tears. I am not generally the type of Mom who goes into denial about my kids issues but THAT diagnosis was just too much for me. My friend called me as I was getting into the car and I just cried. Child 2 kept saying ..”Teacher sad”. My friend told me that he would do some research for me and compile a report of sorts. I told him to do whatever makes him happy.
I took my son to my MIL (it was school holidays and Child1 was there) and I managed to meet my DH during the day for lunch to tell him about it. He was as shocked as I was. All the stuff that our child was doing, things that we thought were very cute (the obsessive cleaning and re-arranging of my cupboards etc) was actually an indicator of Autism (according to the Dr).
We speak about it regularly (he asked me in December if we could rather start to talk about it in 2012 because it was just too much for 2011) but I honestly can’t say that we are at the point of acceptance just yet. I suppose we are still in denial. We are constantly looking for “signs”. Signs that it just can’t be. Signs that he is being a “normal” 4yr old.
I guess it will take some time. I cried nearly every day in December since finding out about this. And on Christmas day my family really pushed me over the edge about it as well.
For the moment I’m doing a bit of reading – I’ve only just been feeling brave enough to start to do this. My good friend compiled a little report for me and sent me some really good links to read. He took care to specifically not send me panic-inducing website links. I appreciated this soooo much. And I’m in the process of scheduling an appointment with a Specialist Neuro-Paed in private practice who specialises in this type of thing.
Her assessment requires her to spend at least two hours observing him. She’s already sent me a lot of forms to complete as well as forms for his teacher to complete. Somehow I already feel better about this – we haven’t even consulted with her yet but it feels like she’s doing EVERYTHING in her power to be as thorough as possible in her diagnosis. I have been told by more than one person in the know that high-functioning Autistic kids usually get re-diagnosed when they are older with Aspergers or ADD. Seriously. I’m not sure if that is meant to make me feel better or anything. I guess it is what it is.
For the moment we just go on. There is a lot of confusion. There are many questions. There are lots of “why us, why him” type of moments. There are MANY WTF moments. My DH even asked me if there is a remote possibility that we could be related because it just feels unreal that we made TWO broken children!
I am sure though that these feelings will pass and that we will continue to be the best possible parents for our boy who we absolutely believe is going to be just fine.
For now I realise that there is a lot to be grateful for. I am grateful that he is high functioning and that, depending on how well he responds to therapy in the next two years, we may very well be able to mainstream him. He can dress himself, he is halfway potty trained (and I’ve no doubt that we will get this completely under control in the next couple of months), he can eat by himself and he is exceptionally tidy about this. I am grateful that there are ways to manage the issue,even though I can’t quite say how big an issue it is just yet.
I am grateful for my good friends that I’ve been talking to about this. They have been so kind and so brilliant and encouraging and sensitive. It pains me to say this but those friends who I’ve shared this with (irl and in my computer) have been so much better at supporting me and encouraging me than my family.
Do you know anyone who is autistic or who has an autistic child? Can you recommend some good blogs for me to read? I am not brave enough to google Autism just yet and I would prefer if you checked it out first before sending it to me.
Because I really can’t cope with anything at this moment that has the potential to induce panic and more anxiety. Please.