Fragile X

Interesting article on a potential cure.

HAPPY NEW YEAR

Autism

We are hoping that a possible diagnose of Fragile-X might account for Jordan's autistic traits. Here is the National Autistic Society's website which I haven't had a chance to explore yet but I will. Oh yes.

OUCH! It's a disability thing...

I get their e-mails. I laugh and sometimes I cry (with rage, that is). Fans of disability stereotypes need not apply.

INDIA KNIGHT...

...has an excellent blog over at Times Online. Mouthy? Opinionated? You bet.

Contact-a-Family

We joined this branch of the organisation whilst it was in its infancy in Southwark. It was a relief to go to functions, meetings, days out and pantos and NOT feel like your family was the only one affected by disability. I haven't been for ages but the website is excellent.

MENCAP

I've only just come to the website as Jordan has got older. They have a really useful advice section. I was desperate for a strategy to help Jordan cope with bereavement and found it here (The Makaton Vocabulary Development Project has an excellent brochure on this subject too).

What a week that was...

the day after we saw the geneticist, Jordan had a nasty fall on his hemiplegic leg in the bathroom. The following morning he couldn't walk at all so we called an ambulance. He has reduced sensation in that leg and is pretty stoic where pain is concerned. However, just because he can put up with a lot of pain doesn't mean that he should. So, off to casualty where I must say everybody was very good to the boy. Certainly no 'does he take sugar?' attitudes. He had an x-ray to confirm that nothing was actually broken and home we came. He's been sleeping downstairs and scooting about on a swivel chair for a week. Today he started walking again - hoorah! I don't mind telling you, I shed a tear. I don't know if anyone else has felt this but when your disabled child goes down for the count, you do tend to fear the worst, or I do, anyway.

HEMIHELP

This is an excellent site devoted to all issues relating to hemiplegia. I simply cannot recommend it too highly.

FRAGILE-X SYNDROME

We saw a geneticist at Guy's Hospital on Friday who took a detailed family tree and felt there was enough evidence to make a blood test worth doing on Jordan. Now it must be said that when there is blood to be taken Jordan is usually the one clinging to the light fittings and screaming but between his father and two doctors Jordan had blood taken! He certainly didn't like it but it is for the greater good...

Check the link on the left for more details of the syndrome.

UPDATE: Excellent support group courtesy of FRAXA with thanks to Sally.

MAKATON

is a very useful system of language support. When I have used it with my son, it slows my speech down to a mnageable speed for him to assimilate and I only sign the key info. Despite anything well-meaning people tell you, as in 'Why are you teaching him another language?" - you're not. You are reinforcing spoken language. You speak and sign. Even if your child has no speech, signing and speaking to them keeps the linguistic pathways open in the brain until the child says their first words and even if they never do, they can still communicate with you.

HELLO...

...and welcome to the blog.

I'll post links that I've found helpful.

If anyone finds anything that's helped them, let me know and I'll add it to the list.

Any organisation ticked you off on a disability-related matter? Here's the place to sound off.