Speech

‘He still can’t talk!’

It was just a comment from a six-year-old outside Pudding’s school. Honest surprise that in the term since my little boy had left mainstream his speech hadn’t miraculously improved.

What that child didn’t know is that his words made me cry. It had been a pretty rubbish day for a variety of reasons so I guess his comment affected me more than it would normally.

But the hard truth is that Pudding says far less than he used to.

Speech and language therapy (SLT) was the first intervention that we had, starting when he was two years eight months, even before he was diagnosed. I had heard all the usual comments –  ‘Mine didn’t talk until he was three’, ‘He’ll probably start speaking in full sentences’ – but I knew that something wasn’t right. It wasn’t just that Pudding didn’t speak, but it was his lack of understanding too.

Early SLT sessions started working on trying to encourage two words being put together. Not just ‘More!’ but ‘More apple’ or ‘More juice’. We never got anywhere with that one!

Slowly though, his understanding of instructions improved and his vocabulary climbed to over 50 words. He even managed to work on his own sentences – in 2015 we were over the moon when he came out with ‘Where de moo?’ as the pantomime cow went backstage. Getting on the trial (which should in theory halt any deterioration in the brain) I thought that his language may continue to improve though I never hoped for any miracles.

In the last year or so I have lost that hope. Slowly, so slowly that we barely noticed, many of his words have been lost. He still chats away in his own language but recognisable words are fewer (with the exception of some random outliers – ‘Des a Bunny!’ shouted at top volume is a joy to hear).

Pudding wearing a crown of flowers and grass.

At the end of term we of course got a report from his new school and it was a lovely read. Apart from one sentence that suggested a target for him would be to use ‘Yes’ in appropriate situations. He actually did say ‘yes’ even before ‘no’ appeared (an early sign that he wasn’t an entirely normal child!) and continued to use it really well. Yet now, ‘no’ is often used for both.

He used to melt hearts with his enthusiastic ‘Dank Kyou!’ but he doesn’t say it anymore.

He used to shout ‘Duck!’ when Sarah and Duck came on TV.

I’m not even sure when I last heard ‘Mummy’.

I have come a long way with acceptance in the last year. It used to be that when I saw a young child chatting away to their Mum my heart would sink as I wished that I could have that with my Pudding. I know now that that will never happen. And the other week I was so proud of myself for feeling nothing but simple enjoyment as I overheard a conversation on the bus where a lady was answering every question under the sun from her inquisitive two-year-old. I marvelled that it didn’t hurt as it always had.

I can be content with my Pudding as he is, but I don’t want to lose any more of him. After the latest positive hearing test, I can’t stick my head in the sand and put his lack of speech down to hearing loss. It may still not be the start of the long slow Hunter Syndrome decline, but I have to face the possibility that it could be.

And that is a scary thought.

Moving on

In amongst all the negative stuff about antibodies, trial and so on, it is a pleasure to have some good news for a change.

Way back in September 2015, Hubby and I were looking at schools for Pudding and trying to work out what would be best for him. It was hard making a decision because of course we couldn’t see into the future. We had no idea what the next few years were going to bring. We didn’t know whether he had the severe version of Hunter Syndrome that affects the brain (he does), whether he would get onto the clinical trial that might help his development (he did), whether he might improve enough to start catching up his peers a little (he hasn’t).

Pudding smiling widely in his red school shirt.We already knew what the local primary (which T attends) was like, and we also went to look round the nearest specialist provision. (The term ‘special school’ still makes me wince a little, though there isn’t really an easily understood alternative.) It was lovely there but in the end we chose mainstream. I thought it would be good for him to be rooted in the local community and good for others too, to have some understanding and acceptance of those who are a little different to them.

I will never regret that decision as there have been many positive aspects to Pudding’s time in mainstream. However, going into Year 1, I knew that the challenges for everyone would get greater. Whilst his peers were all learning to sit nicely and be taught more formally, that was never going to be easy for my little whirlwind. We tried, and failed, to get a split place between the mainstream and special schools. I had found reaching that choice a very emotional journey, and even harder to then be turned down.

But a place has now come available and Pudding will be starting at the special school after Easter.

I know he will be missed in mainstream – for a start there were three devastated faces when I sat T, Niece and Nephew down to tell them the ‘good’ news! His TA will have significantly less bruises but will miss him awfully. And the rest of the school will probably seem oddly quiet for a bit.

One thing I hadn’t expected was the reaction of our SENco. She was quite emotional when she told me how hard she had found it to paint a less than positive picture on Pudding’s EHCP – that it made her feel that she had somehow not done her best for him. Yet this couldn’t be further from the truth.  In fact, by being honest about the limitations we were working under in mainstream she has helped him find a place where I hope he will be able to flourish. I would hate her to think she has failed in any way as she has done so much to support both Pudding and I while he has been at the school. She has coordinated people, resources and reams of paperwork. As well as catching up at her SEND coffee mornings and at formal meetings, she has also been known to email me out of hours when I’ve had bad news. I’ve read so many accounts from other people who have never had anywhere near this level of commitment from their SENco, so I hope she knows she is one in a million.

I know I’ll be an emotional wreck on Pudding’s last day in mainstream but I am truly excited to watch this next stage of his life. Onward and upward!