News roundup

I’ve had my behind soft-kicked by His Girl Friday because I’ve been so lazy. And fair play. We’ve been busy and never seem to be on top of things, but that’s no excuse.

I wanted to mention how delighted we are with Cathal’s progress. We’ve gotten very fond of the wee man (even though we STILL haven’t met yet) and we were all anxious when his cardio surgery was announced. Thankfully he’s past that now and well on the way to terrorising the household. His supergran Nan P has been doing a great job of keeping us up to date, and now we’re getting the full, dramatic story from his mum too, now that she has a minute. Makes for nervy reading by times, but cardio issues are a reality for two out of five kids with DS, so it’s important to know.

On a different note entirely, a grim smile was afforded by the news that Sequenom’s shares fell by a huge amount last week. You may remember quite a while back that I wrote on the release of their ‘wonder drug’ that could detect DS in utero. The fear being, of course, that early positive detection would mean early abortions. This won’t stop them, of course, but losing money is the only thing that this particular shower of monkeys will ever understand. *** them. (Insert triumphalist swear word here.)

I wrote a while back about August’s upcoming World DS Congress. I had hoped to attend, but at €375 per guardian attending, and €200 per person with DS, it’s unjustifiably steep for us. I’m sure they’ll do well, I know it’s a huge organisational task for them and the costs are no doubt enormous but nonetheless I am a little dismayed that the prices are quite so high.

Finally, on an up note, I want to link to Hammie and give her a massive round of applause for the great work she’s been doing on her own website and also at Irish Autism Action. This is one tireless lady and I have huge admiration for her. Drop in and learn a thing or two about what the autie crowd are doing to push their agenda. Plus, if you want to see what a great big softie of a Boyzone member looks like when he’s having a little cry, Hammie’s the woman to go to. 😉

Mucky pups 'r' us

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Action for autism

As a parent of a downie, I get to take a lot of state and social assistance for granted. Within reason, of course, but I’m very thankful for it. To a significant degree, it allows us in Downsyndromeland to get on with managing and providing for the special needs of our affected family members. It wasn’t always that way, and I’m acutely conscious of the efforts of a generation of parents before us who hacked a clearing for us.

To my uneducated eye, it seems that the current generation of parents of autistic kids are engaged right now in that titanic struggle.

I hope this post can help to drum up some support for them. If you can take moment to visit O2’s website here it will tell you about their initiative with Irish Autism Action to raise the (inevitably named) much needed funds. This from O2:

October sees the launch of a new initiative by O2, in partnership with Irish Autism Action. It is called the Irish Autism Action Affinity. This offer is open to both prepay and post-pay O2 customers and the message is simple – Text the key word ‘AUTISM’ to 50308 and 5% of your O2 monthly spend will go towards autism services in your community.

Ok, you got that? If you’re an O2 customer, text AUTISM to 50308 and O2 will donate 5% of your monthly spend to autism facilities. That’s money that you’ll be spending anyway. And if you have no connection with anyone with autism, you might end up never having a clue as to the extent of the wonderful a thing you’ve done.

But I’m telling you now.

It’ll be a wonderful thing.

Unfortunately my esteemed readers outside of the Republic of Ireland won’t be able to take part. We’ll get Hammie to get to work on that. I believe world dominion is part of her plan for November. I know too that I have one or two readers who fall outside the special needs carers category. Guys, your help would be appreciated by some seriously overstretched people.

God bless.