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

Original poster

Hello

248 replies

lebel · 04/05/2009 21:21

Hello, I am new here, just found you through a search engine

I have two daughters, L is 3 and C is 5 months and has downs. She had open heart surgery at 12 weeks to repair a hole in her heart.

I was looking for weaning advice, I have been giving her taste of purreed stuff for 3 weeks now, which she seems to enjoy

We just got our dla award through and the extra tax credits, they'll really help, we weren't expecting them, LOL!

We have portage and go to a support group for ds toddlers,

Hope to get chatting to some of you soon, xxx

OP posts:
madmouse · 04/05/2009 21:24

Hello to you too and welcome!

My ds is 15 months and has mild cerebral palsy. You will find good support on here!

Original poster
lebel · 04/05/2009 21:26

Thank you Madmouse, it is nice to find people who "understand", if that makes sense

OP posts:
Spinosaur · 04/05/2009 21:33

Hello

I have 2 children, my eldest dd is 8 and youngest is 4, he has ds. He is really good fun, and I can't quite believe he is starting school in September. My son started on solids at about 5 or 6 months, he only really liked bananas and other fruit. He is still picky about vegetables and I have to hide them in food he will eat. However, how he eats depends on his tummy as he is very prone to constipation and when he is full he won't eat, which is understandable. I have just learnt not to offer too much and when he is going through a hungry phase I try to give him a bit of everything. He took longer than some children to move on from soft food as his chewing was not great, this can sometimes be an issue still. Hope this helps.

Original poster
lebel · 04/05/2009 21:39

Thank you! She'll eat anything that has been mixed with babyrice!! LOL, she seems to quite like mashe potato, I didn't blend it and she was OK.
We had real issues with her feeding before her op, she was only taking 2oz every 4 hours, but sleeping through the night from 9 days old, we didn't know about the hole until she was 8 weeks, they said they would operate when she was a year old, then went for another check at birmingham and they said "see you in 3 days" - since the op she'll drink7oz in one go, but still sleeps through
She started waking up earlier, so I started the weaning, she's OK again now.

She started nursery this week, only 2 mornings a week, but she is so chilled out about it all and her big sister is thrilled to have her at nursery with her.

OP posts:
Peanut08 · 04/05/2009 21:58

Hi, Lebel and welcome
Your little girl sounds gorgeous. I have a 8 month old boy with DS and he is also very chilled and sleeps like an angel too.
He also had problems feeding because of a hole in the heart but is doing really well after surgery at 4 months I found it such a great feeling when he finished his first full bottle

It looks like your getting lots of support, we've had a couple of portage sessions so far which have been great also finding the physio really helpful.
We started weaning at 5 months and he took to it really well (although we had to convince him veg was just as good as fruit think he has a sweet tooth!)and we're working on lumps at the moment which he's still not sure about.
Look forward to chatting

cherrymonster · 04/05/2009 22:01

hi, welcome to mn. i am 27, have four kids. ds1 is 10, ds2 is nearly 8 and has dyspraxia and possible hfa/as. dd's are 4 and 3.

devientenigma · 04/05/2009 22:18

Hi, I have a son with down syndrome who is now 8 years old. He has a heart condition called tetraology of fallot, among other problems. He had open heart surgery at 18 months to alieveate some of his condition and willneed further surgeries. TOF as the problem is often referred isn't correctable.

sarah293 · 05/05/2009 08:32

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Original poster
lebel · 05/05/2009 08:38

Thanks for all the messages :D Yes, we have got some great support, we've been lucky.

We have a key worker, she filled out our dla form, thank god for her, I broke out in a cold sweat looking at it!!

Peanut, I so know that feeling when they finish their first bottle!! LOL, she did it in hospital and I burst into tears ... I was tired!

Got to go back for a check up this week. We are taking all her old clothes, it's a big wrench, she's finally grown out of her 0-3month clothes, she's now 11lb! She was only 5lb 13oz when she was born, bless her x

OP posts:
bubblagirl · 05/05/2009 08:46

hi welcome i have a ds who is 4 just

and he has HFA [high functioning autism]

its very supportive on here x

5inthebed · 05/05/2009 08:49

Your DD sounds lovely. She sounds like she is coming on really well with her developement.

I've got 3 DS's aged (nearly)6, 3 and 5 months. My 3 year old has autism and dyspraxia.

trace2 · 05/05/2009 09:15

hi and welcome i have two grown up children, and jack 6y with aspergers, and chloe nearly two with undx condition,

Soph73 · 05/05/2009 09:21

Morning lebel.

I'm new on the SN threads as well. You're in the right place for fantastic support

I have 2 sons. Tom is 6 years old and Sam is 1 year old and he has Mosaic Downs Syndrome. We live in Gran Canaria and have had fantastic support so far. We are waiting at the moment for a certificate so that we can claim some financial support from the authorities, however, things take an age to materialise over here.

We weaned Sam just the same as we did with Tom and he took to it straight away so I'm probably not the right person to be able to give advice. However, I will find some links and put them on here for you, which I found yesterday and are really helpful.

Look forward to keeping in touch with you

r3dh3d · 05/05/2009 09:43

Morning lebel. We're a pretty diverse bunch here, all shapes and sizes.

My eldest is 5. She has a couple of rare (and unrelated) conditions, the more severe one being rare enough that there is no UK support group. She has severe epilepsy, hemiplegia, a developmental age of about 8 months and very severe delay in social/communication. She is gorgeous. And very cuddly!

My youngest is 3. And the quintessential NT "threenager". .

We live in darkest Surrey with a small hairy dog.

Re: weaning - had to wean DD1 earlier than I would have liked on GOSH advice: I suppose the advantage of that was that I knew she didn't need it nutritionally and could concentrate on just making it fun/ stress free. And wipe-clean. Wipe-clean was a big help!

Soph73 · 05/05/2009 09:47

Can I just ask - what does NT stand for?

r3dh3d · 05/05/2009 10:20

Er.. "Neurotypical" though I think "typically developing" is probably the more politically correct and inclusive term now. But that side of things is generally a bit beyond me!

BradfordMum · 05/05/2009 10:50

Riven- your first child ran away?! Is that code for something?
Sorry to ask.

fizzyanddizzy · 05/05/2009 11:09

Hello Lebel
I have a 7 month old with DS ( and he has two older brothers who are 2 and 5). He is v. cute and smiley and he too has slept through the night since he was six weeks old for which we are eternally grateful!

I am fairly new here and had posted as well about weaning (hello Peanut and Soph) as he is not very interested in food (to put it mildly). My biggest winner at the moment is weetabix mixed with fruit puree and he is partial to sticking a rice cake in his chops. Whilst he is good at drinking good he is also v good at puking it all back up again

We have our first proper portage session on Thursday and are planning to use the local toy library. He should have his 1st CDT meeting this month - anyone with any tips?

sarah293 · 05/05/2009 12:27

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slightlycrumpled · 05/05/2009 12:34

Hello, I have two boys and my youngest (5yrs) has di-george syndrome, which has many similar traits to down syndrome.

Welcome to the SN board, you will get some good advice on here and more importantly support.

Soph73 · 05/05/2009 13:54

Hey fizzyanddizzy. We thought we were lucky with DS1 as he slept through at 12 weeks but Sam slept through at 5 so even better

Sam adores weetabix with fruit puree but he will eat anything that's put in front of him as long as it's pureed. We are starting him on food with little lumps in but so far he's not impressed

What's portage? Is it the same as physio?

Riven - so sorry to hear about your daughter.

troutpout · 05/05/2009 14:07

Hi
welcome to Mumsnet

bunnyrabbit · 05/05/2009 14:53

Welcome to the SN board one and all!

I have a DS1 (5.8) with a DX (diagnoses) of ASD (Autistic Spectrum Disorder) and a DS2 (13 months) - NT so far

Would be lost without mumsnet.

BR

HelensMelons · 05/05/2009 15:51

Hi Lebel

I have DS1 (9, nt), DS2 (8, asd) and DD3 (6, nt).

Welcome to mn x

Soph73 · 05/05/2009 16:08

Here is the link I mentioned this morning. It has other links in it which you may find useful.