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Here are some suggested organisations that offer expert advice on SN.

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(20 Posts)
littleredcorvette Mon 11-Jul-05 11:10:15


I've been a lurker for many months and I feel it is now time to join in.

My ds is nearly 3 and has a rare genetic condition that hasn't got a name - partial duplication of the long arm of chromosome 4. This has caused delayed development (he cannot yet walk, talk or feed himself). He also has Nystagmus (wears glasses with tinted prism lenses), Hypotonia, and Plagiocephally.

He currently has home vists from a Portage worker, Ed Psych, Physio, Specialist Support Services (VI) and SALT, but will be starting nursery in September at a Special School.

He is on the whole a happy little boy with a gorgeous smile but sometimes I worry what the future has in store for him.

Thanks for reading.

Fio2 Mon 11-Jul-05 11:13:21

Hello (you arent the lady who lives near me are you down in ramgate?)

anyway i have a 5 yrold dd with undiagnosed mod/severe learning disabilites, hypotonia, hypermobily, long sighted and squint, microcephaly and a long list of other diagnosis's I also have a 3 yr old son

Nice to meet you

anniebear Mon 11-Jul-05 11:16:03

Hiya littleredcorvette

Nice to meet you!!

I have 3 yr old twin girls one of whom has SN after having Meningitis when she was younger

This site is really good and the support you will get off the other Mums is just fantastic1

I will warn you though, as others will, It is very addictive!!!!!!!!

eidsvold Mon 11-Jul-05 11:29:11

hi and welcome.. I have 2 dds. My (almost) 3 yo has down syndrome. No 2 is NT. I think we all worry about wha the future has in store for our beautiful children.

coppertop Mon 11-Jul-05 11:38:38

Welcome to the SN board. I have 2 boys with autism. They are 5yrs old and 2yrs old.

MandM Mon 11-Jul-05 11:42:18

Hi LittleRedCorvette and welcome to the SN boards!

I have one dd, age 4, who has Williams Syndrome and Cerebral Palsy!

You will find these boards so helpful and supportive. It's a great place to vent your frustrations, have a cry when you need to, and celebrate all the good times and achievements!

MandM Mon 11-Jul-05 11:44:07

Didn't mean to put an '!' after CP - although that's sometimes the way I feel

Dingle Mon 11-Jul-05 11:52:28

Hi and welcome littleredcorvette .

Find yourself right at home. Great people, great source of info, great place to share good news and a great shoulder to cry on!

I have a DS(5.5)NT and a DD (3.5) who has Downs Syndrome.

Merlot Mon 11-Jul-05 12:02:31

Hi littleredcorvette and welcome

I have two sons - Ds1 is 8 years and NT and Ds2 is 22 months with patchy developmental delay (and no dx as yet).
My dh has a translocation of genetic material on chromosome 15, so there is a possibility that ds2's difficulties are genetically linked.

DS2 is a lovely little fellow, very happy (most of the time) but he is also a very quiet little chap who has very few sounds and little discernable understanding.

It is very nice to meet you - I'm glad you've stopped lurking (but that's how we all start!) and decided to join in. Looking forward to getting to know you and your ds

lou33 Mon 11-Jul-05 12:03:00

welcome to mn

jenkins88 Mon 11-Jul-05 13:23:55

Hi littleredcorvette

My DS is 3.6 yr's old and has some developmental delays and plagiocephaly.

Hope you find the board as helpful and supportive as I have.

Thomcat Mon 11-Jul-05 13:33:01

Hiya and a huge welcome, glad ytou stopped lurking, MN is fab and the Special needs section is very supportive.

i have a little girls who is 3 and a half and she has Down's syndrome. Currently 16 weeks pregnant.

Look forward to 'chatting' to you.

TC x

JakB Mon 11-Jul-05 13:40:47

I have a little girl with autism and a small boy who is apparently NT

RnB Mon 11-Jul-05 15:17:00

Message withdrawn

Socci Mon 11-Jul-05 15:36:45

Message withdrawn

macwoozy Mon 11-Jul-05 15:40:44


I have a 5 year old boy with autism.

littleredcorvette Mon 11-Jul-05 16:44:29

Thank you all for the lovely welcome to the Special Needs board. No, I'm not from Ramsgate - I'm from sunny (well it is today!) Birmingham

Fio2 Mon 11-Jul-05 16:49:52

I havent long moved from the midlands. Are you under the Womens hospital then for genetics? we saw Jenny someone her name was (gosh i have forgot the rest of her name ) remember the genetic nurses name was Margret and she was lovely

littleredcorvette Mon 11-Jul-05 18:46:35

Hi Fio2 - yes we were seen at the Women's Hospital and yes the Genetic Counsellor was Jenny (I can't remember her other name either!)

Unfortunately, because it is a rare condition she couldn't really tell us much about it other than that it was de novo (happened out of the blue - neither of us are carriers) and that it causes delayed development and maybe all his other problems too.

Can't find much on the internet either

Fio2 Tue 12-Jul-05 12:51:23

isnt it a small world??! She is a lovely Dr isnt she?

Sorry the diagnosis hasnt really answered any questions. it is very hard. We still dont have a diagnosis for our dd and |i find it difficult not having a map of the future iykwim, but then again who does?

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