WHY I DIDN’T WATCH THE A WORD

It was all over my twitter and Facebook feeds. The A Word, a new series about a family whose young son is diagnosed with autism. Most of the comments I saw were positive, with parents relating to the drama and feeling emotional as they remembered going through all the same things.

But that’s one of the main reasons I didn’t want to watch it.

 

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THE LAST BIRTHDAY PARTY

Looking back on old photos can be bittersweet. Especially when you have children with special needs. So many of us hope to carry on with family life as normal, and at first we think we can. And perhaps some families do.

But many differences become more noticeable as time goes on. More and more time has to be spent looking after their needs and attending appointments. Meantime other children grow older, and grow away from your child.

There are two moments in particular that stand out for me. One was a letter offering a secondary school place to Smiley at the same school attended by her sister. I cried. You see for several years I’d assumed that she would go to mainstream school. I checked them out for wheelchair accessibility. I put her name down on the lists. In the intervening years filled with battles with the State to get her any education at all, I’d forgotten my early optimism, until I got that letter.

The other time was much earlier, just before the battles began.

It was the occasion of her last birthday party.

When she was three.

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On begging for services

This is part three of a planned series of posts about our experience of the transition from special school to adult disability services for my middle daughter who finishes school this year. You can read Part 1 here and Part 2 here.

Is this what I will have to do next?

Two months have passed and very little has happened. Still no premises, still no place for Smiley once school ends in June.

I am networking with other parents in a similar situation and we are sharing information and issuing stories through social media. One of the national papers is interested in writing a feature on the situation facing young school leavers, but no parent seems interested in being interviewed. That includes me. But maybe I need to consider it.

The idea of begging is just awful.

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Undiagnosed children grow up to be undiagnosed adults

And sometimes they live happily ever after. They really do. Because undiagnosed may not mean complex medical problems or disabilities. Sometimes all an undiagnosed child needs is love and a little extra support and they will grow up to lead independent fulfilling lives. For others the future is more uncertain. Tragically some children have such severe difficulties that they never make it to adulthood, and on undiagnosed children’s day, we should also remember those families and their enduring grief.

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Today

At one point today I lost the ability to speak. At least in recognisable English. I was trying to talk on the phone at the time to a potential babysitter (hurrah!). I was also burning the latest batch of Brownies (aka reinforcers), looking for chocolate buttons for Smiley, attempting sign language with my son and peering over Angel’s shoulder to help with her latest Econometrics assignment. So naturally an assortment of jumbled up words came out together.

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(This actually happened last Tuesday, am very late in posting over here, my apologies)

Tell me why I don’t like meetings

I never really did. During my working life, they always annoyed me, they seemed to exist only to suck valuable time out of the day, and give a captive audience to those who like the sound of their own voice.

But sometimes you spot one that looks interesting and useful.

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