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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:
fizzyanddizzy · 05/05/2009 17:38

Have just laughed reading the first few lines of the link, Soph - whilst my baby might keep his mouth closed, his brothers and dad are regularly to be seen sitting in a line on the sofa watching tv - all with their mouths wide open

Have heard good things about talktools and a TA at my oldest sons school went to a talk on it all recently and came back raving.

Portage isnt the same as physio (am v impressed by the amount of physio and OT Sam is getting). Its a service for pre-school children working with them and their families on identifying goals for development in all areas of their life and how to achieve them (I think!- will find out more on Thurs).
We were seeing a physio - every month - but they have now left and have heard no more! We can access one through the toy library though.

marmoset · 05/05/2009 18:00

Hi Lebel
Congratulations on your new arrival

My eldest son has DS and is now 12 and I have 2 other kids, a son of 10 and a daughter of 6m. It looks as if you are getting lots of useful help and advice and you'll get lots of support here.

Other tips - I don't know if you have info from the Down Syndrome Association and from the Down Syndrome Education Trust but they are good too.I have a couple of useful books which I ordered through the Trust - Gross Motor Skills in Children with DS and Fine Motor Skills in Children with DS published by Woodbine - really useful and easy to use.

Weaning is a long time ago for us! My son had no difficulty taking purees but we never got onto finger food and his diet now is still mashed. He is fairly unusual in this and its probably linked to probs he had with his tonsils- all of the many kids I have come to know with DS eat quite normally but if things do take a lot longer than expected, ask for specific help from the speech therapist as chewing etc is linked to speech development.

Now, would someone tell my 6m old that everyone else is sleeping through the night and to get on with it?!

lou031205 · 05/05/2009 18:10

Hi Lebel, welcome . I have DD1, 3.5 with Developmental delay/epilepsy, DD2, 20 montha, NT, and DD2, 3 weeks.

ilovepeppapig · 05/05/2009 20:00

hi lebel and welcome. I have dd who is 7 with cystic fibrosis, epilepsy, speech and language delay etc. etc.
you will find it a great place as my 9 year son i am addicted!

anonandlikeit · 05/05/2009 20:55

Hi Lebel & welcome, your dd sounds gorgeous.
I have two boys the youngest has Mild CP & asd.
Hope you find lots of support & advice on here.

fizzyanddizzy · 06/05/2009 09:03

OMG. Have just discovered that more goes in if I let him hold the spoon. There is weetabix EVERYWHERE!

Original poster
lebel · 06/05/2009 11:24

Hi all,

WOW, I cannot believe all those replies , even getting the hang of the smilies now

Thanks all, I haven't tried her with weetabix yet, as I thought it best to hold off the wheat until 6 months (cos obviously something magical happens at six months, LOL!) She loves baby porridge, rice, etc

Portage is great, google portage, they have an official webpage, it is really interesting and I am so greatful for the support our worker has given us so far, she's lovely x

OP posts:
bunnyrabbit · 06/05/2009 11:55

Shame you missed the easter emoticons they were really cute with ears on.

Soph73 · 06/05/2009 12:06

Afternoon all.
LOL at fizzyanddizzy Have you managed to clean up the weetabix yet? Why is that weetabix hardens like concrete???? Thank god for tiled floors that's all I say

bunnyrabbit - bother, I missed those as well!

bunnyrabbit · 06/05/2009 12:15

Oh yes weetabix... I agree bl**dy impossible to get off!!! And it stains. But if you get the consistency right is does stick to the spoon. However this does mean it has more 'flick ' potential. Enjoy!!

Emoticons might still be around.. [bwink] i think it was a b but can't remember

bunnyrabbit · 06/05/2009 12:16

no obviously not

bunnyrabbit · 06/05/2009 12:23

Ah well you can look a them on this dead thread
here

Soph73 · 06/05/2009 12:27

Aaaahhh, they were cute. I've not been brave enough to give Sam a spoon yet. He does try to grab it though. Maybe during the hols I'll let him practice when I'm at home all the time and can actually clear up after him

marmoset · 06/05/2009 17:55

Weetabix - a cereal AND a building material....

We ended up putting up tongue and groove panels at eating area and painting them gloss white - a lot easier to clean and you don't take the plaster off when you try to scrub! Where is the home improvement show based on hiding stained walls? Maybe the BBC will do one...

Soph73 · 07/05/2009 09:35

Marmoset - maybe you should start one then we could all join in with handy hints and advice

marmoset · 07/05/2009 11:45

Good idea Soph - instead of mood boards, we could have 'food boards' - what goes with butternut squash sprayed up the wall?

How are all the little ones today?

fizzyanddizzy · 07/05/2009 12:53

am awaiting first portage visit - preparation is the wiping up of old food (have just noticed that the 's' on my keyboard is sticky...)am also having a fit of the vapours at the thought of returning to work on Monday!!!!

PheasantPlucker · 07/05/2009 13:13

Hi there! I have 2 dds, 8 year old dd has CP, epilepsy, hydrocephalus, learning difficulties, VI and global delay. She was born 3 months prematurely and had a massive brain haemorrhage as she was very unstable and ill, which led to her conditions.

Soph73 · 07/05/2009 13:21

LOL marmoset - could just imagine Lawrence Llewelyn-Bowen (or whatever his name is) getting involved in that one

Sam is fine thanks. After his ginormous pout on Mon when I took him to Nursery, he is back to his big smiley, huggy, vocal self when he gets in there. He actually gave Suzy (the lady in charge of the babies) a hug yesterday. He put both arms round her neck and buried his face in her neck, even she nearly cried

fizzyanddizzy - I know what you mean about returning to work. I had to come back when Sam was just 4 months old, not a nice feeling. However, got back into the swing of things in next to no time. Mainly because his Guarderia (nursery) are fantastic.

PheasantPlucker - hi to you and your dds, sounds like you've got your hands full (understatement of the week probably)

marmoset · 07/05/2009 13:39

Fizzy - good luck for Monday. What childcare did you go for (sorry if I have missed a message on that?).

Sam sounds a honey bunny, Soph!

Soph73 · 07/05/2009 14:53

marmoset - he is the most adorable child I have ever come across .... in my completely unbiased opinion you understand

marmoset · 07/05/2009 15:27

Well, natch!

fizzyanddizzy · 07/05/2009 16:04

Just had a FAB portage session!!! Alex is clearly a genius and is officially trying to read!!! at 7 months no less!! Is now exhausted by his antics and is resting before continuing his war against home furnishings with his weapon of mass destruction - sludgey food.

marmoset how are you coping with having a baby in the house again??? and a girl to boot! Both my younger boys are going back to the childminder that we had before I went on maternity leave this time which I feel fine about really but the not panicking about what might happen to them just takes getting used to (would have thought I would be used to it by now - 3rd time I have gone back to work after all).

Soph tell me what else young Sam likes to eat. I am completely at a loss with what to tempt the little prince with although am going to give the mash potato suggestion a go later.

marmoset · 07/05/2009 21:02

fizzy - you have a star on your hands there!

Glad you have reliable childcare - my dd is booked for nursery when I go back later in the year but I know the people who run it so I'm not too worried about her. I am worried about my fried brain though!

A baby in the house again is lovely but the sleep deprivation not so good - i'm on another thread sharing sleep plans with a few ladies so hope to crack it soon .

Soph73 · 08/05/2009 12:31

Afternoon all.

fizzyanddizzy - I have the Annabel Karmel book and he eats everything suggested in that. His favourite a few months back were:-

pear & butternut squash
leek, pea & sweet potato
courgette & pea souper (courgettes, onions, peas, potato, chicken stock) the whole family loves this
cauliflower, sweetcorn, red & yellow peppers (all boiled in milk until soft, add cheese once it's cooked)

All of the above are blended into a puree & go down a treat. Sweet potato I put in with everything. When I'm doing casseroles I just take some out for Sam add a little bit of pepper & some herbs and blend.

Sounds like your LO is pure genius Sam tried to crawl at nursery yesterday - hooray. He also managed to undo his nappy and smear poo everywhere but hey ho