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Little knocks

1
On Friday my son J had a speech and language therapy assessment. I was told basically that it was pretty pointless doing any therapy with him because he has a severe learning disability and more than likely autism to boot. So he’s being put into a baby group for kids aged 0-12months. J is 3 in November. I am aware of all his issues but to hear it so bluntly is still hard. Despite having all these little knocks every couple of months, I pretend it’s ok but it’s not. It’s so disheartening.

You should never compare children of course because they are

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all so different and excel at some things more than others and especially in J’s case, it will take a lot longer. But I’m sure all do compare at some point. What’s hardest for me is that I’d found a safe haven, a comfortable place, with my fellow charity group running mums. We all have children with Downs. They understood me, we could laugh about things, get angry about things without feeling guilty or without looking down on each other. It was a place where they understood the glory of every new milestone that some mums will never know – not because
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they don’t notice or care, but because most things happen so rapidly, you may not have a chance to celebrate that before the next skill is presented. One day your child is crawling, the next they are up and running around. That process can take months, even years for J to master. I wanted to throw a party when J learned to stick his fingers up his nose! Every little new thing is like winning the lottery.  And every time he forgets that new trick, another little knock.

So things started to change, I noticed all their kids were learning, improving in

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their development and J is too but at a much slower rate. I can’t join in the chats anymore as J isn’t speaking, isn’t walking and we’ve been put down into the bottom class. Isolation again. Like I felt when he was first born and had just been diagnosed with Downs. No crying from him like the other babies on the ward. No interest in breastfeeding at all, making me feel useless and helpless from the start. (I realise now that none of that mattered, as long as he was feeding in some form I was doing the best that I possibly could. No formula feeding
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guilt here!)

But I do feel like I’ve failed him sometimes. Could I have done more? If I hadn’t gone back to work full time would he be more able now? Then I think no, that’s just J. He more than likely does have autism or at the very least severe Sensory Processing Disorder. But he’s happy. He isn’t interested in socialising with other kids, he most definitely is not always cheery, but he’s usually peaceful and calm in his world. He loves cuddles, and shaking strings of beads for hours on end and watching Peppa Pig. He requires nothing else to

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make him happy. Except maybe sausages. And icecream.

So in the end that’s all that matters. I hope one day he will speak, but if he doesn’t it doesn’t matter as long as he’s happy. And the one thing that makes me happy is hearing those little knocks on the wall telling me he’s awake, the little knocks on his table demanding his dinner! The little knocks on his drum when he’s playing and the little knocks on my cheeks when he’s looking into my eyes and smiling and then I know that he loves me without ever having to say a word.

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- 26 Sep 15

On Friday my son J had a speech and language therapy assessment. I was told basically that it was pretty pointless doing any therapy with him because he has a severe learning disability and more than likely autism to boot. So he’s being put into a baby group for kids aged 0-12months. J is 3 in November. I am aware of all his issues but to hear it so bluntly is still hard. Despite having all these little knocks every couple of months, I pretend it’s ok but it’s not. It’s so disheartening.

You should never compare children of course because they are all so different and excel at some things more than others and especially in J’s case, it will take a lot longer. But I’m sure all do compare at some point. What’s hardest for me is that I’d found a safe haven, a comfortable place, with my fellow charity group running mums. We all have children with Downs. They understood me, we could laugh about things, get angry about things without feeling guilty or without looking down on each other. It was a place where they understood the glory of every new milestone that some mums will never know – not because they don’t notice or care, but because most things happen so rapidly, you may not have a chance to celebrate that before the next skill is presented. One day your child is crawling, the next they are up and running around. That process can take months, even years for J to master. I wanted to throw a party when J learned to stick his fingers up his nose! Every little new thing is like winning the lottery.  And every time he forgets that new trick, another little knock.

So things started to change, I noticed all their kids were learning, improving in their development and J is too but at a much slower rate. I can’t join in the chats anymore as J isn’t speaking, isn’t walking and we’ve been put down into the bottom class. Isolation again. Like I felt when he was first born and had just been diagnosed with Downs. No crying from him like the other babies on the ward. No interest in breastfeeding at all, making me feel useless and helpless from the start. (I realise now that none of that mattered, as long as he was feeding in some form I was doing the best that I possibly could. No formula feeding guilt here!)

But I do feel like I’ve failed him sometimes. Could I have done more? If I hadn’t gone back to work full time would he be more able now? Then I think no, that’s just J. He more than likely does have autism or at the very least severe Sensory Processing Disorder. But he’s happy. He isn’t interested in socialising with other kids, he most definitely is not always cheery, but he’s usually peaceful and calm in his world. He loves cuddles, and shaking strings of beads for hours on end and watching Peppa Pig. He requires nothing else to make him happy. Except maybe sausages. And icecream.

So in the end that’s all that matters. I hope one day he will speak, but if he doesn’t it doesn’t matter as long as he’s happy. And the one thing that makes me happy is hearing those little knocks on the wall telling me he’s awake, the little knocks on his table demanding his dinner! The little knocks on his drum when he’s playing and the little knocks on my cheeks when he’s looking into my eyes and smiling and then I know that he loves me without ever having to say a word.

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I am a full time mother, wife and housing manager at a Housing Association. I also run a charity group for kids with downs syndrome. My son J has DS, type 1 diabetes and probably autism. He is the best thing that's ever happened to me. I'm also an obsessed fan of Twin Peaks.

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