The next step of the journey…a speech, language and special needs blog.

Hi everyone,

Apologies for lack of posts the last couple of days but yesterday was an emotional day and I was too drained to write. Today my thoughts are a bit more gathered so I will update you all now.

J’s initial assessment

Yesterday J met our paediatric consultant at the Child Development Centre. He was lovely and quickly put us both at ease (there was a box of things to fiddle with so J was easily amused). 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. J had his head measured and he felt his stomach, look at his back and listened to his chest (no problems there). 

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-paroxysmal). 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.

The decision

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, J will now have genetic testings and more assessments before a final diagnosis. At the moment the main tests will be Autism and Fragile X syndrome. 

What’s next…

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.

And now…

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? Thanks for being more ‘sounding board’ everyone x


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