J’s initial assessment
Yesterday J met our paediatric consultant at the Child Development Centre. We waited in the waiting area first which had toys and books to explore so J didn’t get bored. We were then called in and Dr M led us to his office. He quickly put us both at ease (there was a box of things to fiddle with so J was easily amused) and little did I know what a big part of our life he was going to become after this meeting. The aim was to look into why J has difficulties with his speech and certain behaviours.
What happened in the assessment…
It started with lots of questions about family history, pregnancy, birth, health, eating etc etc (take your red health book, in all the emotion of the day its easy to forget what month your child did things as a baby). J had his head measured and he felt his stomach, look at his back and listened to his chest (no problems there). This is because there are some conditions which come with physical markers such as head size and facial features.
Then he asked me more specific questions such as behaviour, routine, our concerns etc. We talked a lot about his regression at 9m and the ‘episodes’ he occasionally has (non-epileptic paroxysmal episodes). We talked about how he likes to take himself off for alone time when things gets too much and his obsession with shutting (and opening) doors/cupboard. The consultant got to see this first hand as J decided he’d had enough of the games and went for some time out under the chair, and then showed his ‘awesome’ opening and closing doors skills too.
They played some games together using bricks, small world toys, drawing and an attempt at a book (but J was too engaged in the small world wardrobe doors). We then talked some more. Don’t worry about your child showing their true selves. It’s a good thing. It may be tempting to try and rein them in but your professionals need to see the real child for themselves. It’s the one place you aren’t judged for your child doing some ‘unique’ things.
The consultant believes J has ‘a something’ that’s causing a speech disorder. He says it’s not a speech delay due to the regression (so the speech sounds were there and then disappeared and haven’t come back yet).. So, J will now have genetic testings and more assessments (via several professionals ranging from physiotherapy to psychologist) before a final diagnosis. At the moment the main tests will be Autism and Fragile X syndrome.
I have had so many people ask me if I’m ok or how I feel. The truth is that I don’t really know how I feel. I knew that there was a ‘something’ and had suspicions for a while. But to actually hear the words such as Autism come from the consultant is a whole new ball game. It makes it real and not the ramblings of an overprotective Mummy. I was hoping he’d say it was all in my head as it would be easier (mind you until the tests it could all still be developmental…so I keep telling myself). Yesterday my head was a whirling mess of wondering what his future would hold, could I have stopped this, what do we do now etc. I felt happy that he’d now get the help he needs and that there was a reason to everything. Then I felt sad again…it went up and down like this the rest of the day.
Now I have reached a levelled out feeling. I feel in limbo again as we have to wait for more tests and assessments before we move forward any more steps. So, we carry on as normal (or our version of) with speech therapy and preschool support. Life returns to ‘pre-consultant appointment’ for a little while longer. That’s fine with me…I like our bubble.
I would love to hear from anyone who has been through similar? Do you have any advice to others reading this? Let me know in the comments or come find me on Instagram, Twitter and Facebook. If you’d like to fast forward in time and see more about our assessment journey and eventual diagnosis of Autism (2017) check out the Autism Category.