‘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.

8 thoughts on “Speech

  1. Becky

    Thank you for writing this, I can relate completely. I had the same concerns, thoughts and feelings about my lil boy’s lack of speech. Then he was diagnosed 2 months ago with MPS3A, just b4 his 3rd Birthday . I feel heartbroken that I’ll never get to have a conversation with him, he only says a few word but babbles away in his own language. I too don’t wanna loose anymore of my lil boy x


  2. Is it possible that there will be periods of regression followed by periods of improvements? I have no experience at all of Hunters, so I’m sorry if it’s a daft question. But with our boy’s autism we’ve had skills coming and going. Very frustrating, but also always offering the hope that things can improve again later. The brain works in mysterious ways indeed… Hugs xx


    1. huntersmum

      There is that possibility certainly. Unfortunately though Hunter Syndrome is a progressive condition – the build up of waste products gradually destroys normal brain tissue. I still hope that the clinical trial he is on is halting that, and the loss of speech is just temporary. I wish I knew for certain – I’m not very good at working in the dark! Hugs back to you too. xx

      Liked by 1 person

      1. Gosh yes, very hard not knowing… I really hope the clinical trial brings great results, and that this is just a temporary set back.
        Does Pudding have access to any alternative forms of communication if needed, such as an AAC app, or PECS, or makaton etc..? xx


      2. huntersmum

        We use Makaton and he do some signs himself (but again, has lost those too). PECS was introduced at school two terms ago and he has surprised us at picking up the basic levels so hopefully that will continue.

        Liked by 1 person

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