Toby Update

This week has had some really important events.

Today Toby started his hard fought for Speech therapy sessions. He is getting 2 x 1 hours a week which is amazing. Finding a SLT wasn’t easy but thankfully we found one who has worked with Toby before.

We have worked with many SLTs but I’ve had a hard job to try to get SLTs to look beyond the building blocks of understanding / information carrying words. There’s a point at which this no longer correlates with speech development, and Toby is way past this.

My concern was that the main SLT had totally written Toby off saying he wouldn’t talk until he was a teenager. This had also come back in a rather discriminatory statement someone important that not all people with DS talk.

However it’s transpired recently that the main SLT had never actually heard Toby talk spontaneously!! Now Toby doesn’t clearly talk. He has almost no functional speech but if you know Toby, you will know he does talk. He has set phrases, exclamations etc eg oh no; no mummy; over there; get down; Alexa stop etc. and he ‘sings’ whole songs but the issue is clarity. Mummy until very recently was ‘Bubby’. There were lots of ‘b’’s in his speech.

So the new SLT already is talking about strengthening Toby’s weak jaw muscles. She identified today that he’s not forming good seals around his palates when talking. She’s going to do a full sound assessment next week to identify exactly what Toby can say, and what areas need work on.

I feel so excited for Toby. He’s got this amazing opportunity now with a really experienced and switched on SLT who wants to help and is airways identifying the issues that I suspected were the real issue.

What was truly lovely was overhearing Toby’s tutor saying what a lovely child Toby is to teach, and how good he is. Later the tutor came to me and said how impressed the SLT was with Toby’s concentration, behaviour and staying power. For me that was totally heart warming because I worry so much that Toby could play up. But he generally doesn’t. He knows what’s expected and does it until the end.

Having just said that it worked against us today because Toby had his first piano lesson. We are struggling for time because there’s tutor time to fit in; and now the SLT sessions; there’s school on an afternoon, plus school pick up. So we squidged piano in straight after tutor time. But Toby knew he had finished work and wanted to wind down. At the same time we had taken the Christmas tree down and Toby was going completely nutty over it going.

The poor teacher suddenly had a bouncy, rocking, live wire Toby who wanted TV time! We managed to get him settled and started using his Soundbops to demonstrate what he could do. His teacher was recommended by a Rosie and Toby fan and he’s worked with a number of people with autism. I’ve scheduled the next lesson for a better time when Toby’s had a break. I know Tobys capable of learning how to play piano. I think once again the challenge will be how to make it accessible for him. But we have some ideas.

Next week Toby starts back at school for 4 afternoons.

It’s all just SO exciting. Toby’s education really could not get better than it is right now. I’m so excited for where he can get to this term. He was already flying under his fantastic tutor and teacher; but this term he’s got a fantastic crack team behind him who are also energising me too to become more involved again. Originally Posted on 6.1.2022