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Here are some suggested organisations that offer expert advice on special needs.

MNHQ have commented on this thread

SN children

Just looking for somewhere to fit in and chat.

8 replies

Notthisnotthat · 24/01/2016 10:31

My 1 year old DC has congenital scoliosis, I've posted here before under another username and didn't get a response as its very rare, I joined the national charity to access the support forums and although the boards are active, the congenital board is quiet with the last post in 2014.

She is a happy wee thing, small for her age and has not long mastered sitting up unaided. I'm back to work Pt and she has settled in well to nursery. I do find it hard now, as babies we socialise with are moving up groups as they are toddling around, and I know that's a long way off for us. The group we go too is for under 13 months so we will leave there soon, and all I can find is a book bug at the local library that runs every 2nd week.

We are on the list for swimming at the local council pool but the list is huge and you can't access the pool if the classes are on, so I can't even take her myself. Her physio contacted them though saying the lessons would be beneficial but it doesn't help with bumping us up the list.

I'm not expecting replies, but may use this thread as a place to brain dump.

OP posts:
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beautifulgirls · 24/01/2016 20:54

Hi Nothisnotthat

Sorry but I don't have any experience with the issues you are dealing with, but you sound like a great and caring mum, and I can understand how you feel with a child who is not like those around her (I have a daughter with a genetic issue).

You might want to repost on the special needs boards here on mumsnet as there are more likely to be people around on there who can help with more specific advice and support

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Notthisnotthat · 25/01/2016 07:18

Thank you for the reply, I'll ask for this to be moved.

At our next appointment with her specialist she is getting blood taken for genetic testing, she has already seen the Geneticist once.

OP posts:
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BeccaMumsnet · 25/01/2016 10:24

Hi all - we'll pop this over to the SN Children topic at the OP's request.

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birdlover1977 · 25/01/2016 14:26

Hello, I have no experience of your little one's disability but I have 4 children, the youngest two have autism and therefore I have some understanding of how difficult it can be to 'fit in' in mainstream environments. I just wanted to say hello really. You are free to 'brain dump' anytime. The support on here is amazing and really helps to keep me sane at times. Nice to 'meet' you.

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zzzzz · 25/01/2016 20:29

This reply has been deleted

Message withdrawn at poster's request.

Frusso · 25/01/2016 22:18

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Message withdrawn at poster's request.

Bananasinpyjamas1 · 25/01/2016 23:03

Yes do try your local children's centres, any local disability or special needs groups, etc. There may be more on offer if you can pay for some stuff, like private swimming lessons. The more people you speak to the more you'll find out about.
Sympathies though, my son is autistic but a lot of 'autistic' groups or sessions aren't suited to him either, everyone is different!

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Ineedmorepatience · 26/01/2016 10:45

Hi not, I was just thinking about the group that you attend that she is meant to leave at 13 months!

Could you ask the people who run it to consider her developmental stage rather than her chronological age?

We have held Dd3 back in groups such as Cubs when she was nowhere near ready for scouts!

Sometimes its hard to ask but the leaders might be itching to invite you to stay but not want to upset you!

Good luck Flowers

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