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Charlie's Hypotonia Site

(7 Posts)

I updated my son's website today (as he was 18 yesterday!)
I'm only posting a link here because another poster mentioned a while back how helpful she found it ages ago, and there may be others at the beginning of the same sort of special needs journey (he has hypotonia, learning difficulties and ASD)

charliesmomuk.weebly.com/

He has come such a long way from the floppy non verbal little boy, to a fabulous young adult. He has many challenges to come (adult services are crap and we have yet to know what we can do for him regarding supported employment, being independent etc etc) but when I think of how I pretty much sobbed every day for his first few years... I hope it can give others hope!

frazzledbutcalm Wed 10-Jun-15 09:41:05

Oh Medusa ... What a beautiful site and a beautiful family you have!!! That's made me so emotional! Congratulations to you for your hard work in bringing up a fantastic family!

flowers

PolterGoose Wed 10-Jun-15 09:57:30

Thank you for sharing your story Medusa flowers

I read your letter to Charlie through tears, so lovely to hear how far he's come.

Your earlier posts about his hypotonia made me reflect on my ds, his hypotonia and hypermobility weren't recognised until he was 6, and my family are all fairly floppy so I'd not noticed really, and obviously it wasn't severe like your Charlie, plus it was normal for us, but someone should have noticed how slumped he was all the time and how bad his feet and ankles were.

Ineedmorepatience Wed 10-Jun-15 10:48:19

Thankyou medusa I am working with a little boy with hypotonia at the moment, his family have been offered little in the way of info but I will point them in the direction of your site, I am sure it will be helpful to them if only to know they are not alone smile

Whatsthatnoise Fri 12-Jun-15 22:45:12

medusa I am so glad I clicked on this thread, I've had the worst day my first ever buggy vs wheelchair confrontation on a bus and I didn't react well. Think disgruntled sailor, a lot of swear words were directed towards that particular driver blush

Your blog has made me realise how far dd(6) and I have come, from that floppy, tremoring little bundle to the beautiful bright girl she is today. So many of your early days resonated with me and my darling anomaly as her drs so kindly labelled her. Dd and your Charlie seem to have met their milestones on roughly the same timeline, sitting at 10 months walking at 22months. I've had some success with eliminating the w sitting however she probably still does at school when no one is reminding her to keep her legs straight grin.

thank you for sharing flowers it really was what I needed tonight, I suppose the wine is helping too

pannetone Sat 13-Jun-15 15:03:18

Thanks for posting - your blog is heart warming and reminds me to focus on the things that really matter and how there can be happiness and contentment even when the day to day realities of life can be tough-going. Happy 18th Birthday Charlie (and I shall remember it as mine is the same)!

We went away as a family last weekend with DS1 (23) DS2 (whose 21st we were celebrating) DS3 (13) and DD(10). DS2, DS3 and DD are all on the autistic spectrum ( allegedly high functioning but sometimes not!) and we have had a lot of difficulties with education for all 3. Being all together last weekend and seeing them doing activities together and enjoy each other's company (mostly!) was fantastic.

hazeyjane Thu 18-Jun-15 21:30:37

Medusa - thankyou for the link to your wonderful blog, and introducing us to your family.

Your ds as a young boy was very similar to my ds now - so it is really interesting to read about your boy's progress, and to see how well he is doing.

I wish you and your gorgeous bunch all the best.

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