Tag Archives: as alex grows up

This is the house that…

Well, we haven’t got yet. As Alex grows up… and gets bigger and taller and heavier… and we get older, frailer, tireder… there will come that point where… well, he will have to move out. And at that point I … Continue reading

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So much more than What you see…

It’s hard to encapsulate Alex in a few words. In a nutshell, to try to sum him up, I might say, ‘Well, he doesn’t walk and he doesn’t talk and…um, he needs help with pretty much everything.’ And that person … Continue reading

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A very tentative exhale…

This weekend we had respite. A short break, if you like. Almost exactly a year after we lost it. It’s a little hard to put into words just how unbelievably…. It’s not perfect, but it may just be the valve … Continue reading

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A quick letter to our MP – to ask for some cross party co-operation

Dear David I know we have corresponded previously on our son, but today I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions. Rare, genetic … Continue reading

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That DDD study

‘I am writing with news that the genetic tests undertaken… for your child have identified a possible cause for the developmental difficulties…’ You’ve maybe noticed I’ve been quiet with the words of late. This is why. The moment the letter … Continue reading

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Dear Secret Teacher…

Does anyone else read Secret Teacher in The Guardian? I think as a parent it’s always interesting to read – to see inside the classroom if you like. Yesterday’s had this somewhat emotive headline: “Either he goes, or I’m taking … Continue reading

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Marking those achievements

It’s always the small things isn’t it? Within the world of additional needs we don’t call them milestones, rather they are inchstones. Blink and you’ll miss them in the way of every day normal, but to us… everything. Proof positive … Continue reading

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