Hello

[lebel]

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

Morning all.

fizzyanddizzy - at the beginning of the year Sam started seeing a speech therapist, mainly to do exercises on his mouth to try and get him to put his tongue in his mouth properly and keep his mouth closed. We still carry on these exercises at home when we can. Then in March we had an appointment with the Speech Therapist in charge who told us that he really was a little young to have started the speech therapy and to make an appointment for Nov. However, he also said that we had to decide whether we wanted Sam to learn English or Spanish as there was no point in him having speech therapy in Spanish if he wasn't going to go to a Spanish school, etc, etc.

Fortunately I have spoken to a bilingual speech therapist on MN and she tells me that this is complete rubbish and she knows children with DS who are bilingual. I have also done lots of research and had some stuff translated into Spanish for this speech therapist who I will be seeing next Thurs, as I want Sam to restart his therapy.

At the moment Sam makes lots of sounds but doesn't seem to equate the mu mu mu sound with Mum or da da da sound with Dad but he is getting there bit by bit. He has different noise levels and different sounds for food, tired, toys, etc. I am going to be getting on the Makaton website today as I think that is the one that most people seem to use.

Also, forgot to say, we had an assessment appointment back in March, which must be like your DLA. They told us we would know and get his certificate within a month so that we could claim some money from the state. Well, we hadn't heard anything so I got my friend to ring them yesterday and she said that it was sent by registered post and if we hadn't received anything within the next couple of weeks to get back to her.

Anyhow, when we got home yesterday there was a little note for us to pick something up from the post office which was sent by the Canarian Government. Fingers crossed this is his certificate which means we can claim this money. I think the minimum we can get is 382 euros a month, which would be fantastic for us because this is what I'm losing a month in wages for having time off to take Sam to his appointments. We can't pick it up till Sat though as the letter is in DH's name so I can't get it and the post office is only open from 8.30 to 2pm during the week and we're both at work

Sorry for that ramble!!!!

Hello everybody! Soph73 it occurred to me while looking at ASD websites yesterday that a lot of the American websites have facts files, etc. to download in Spanish as well as English! Because of Spanish being the second language in the US. Perhaps that's the same with American websites about DS? You may skip having to do some of the translations

sc13 - thanks, hadn't thought of that. Will take a look if I need any more stuff How are you today?

Hello all. Interesting to read the approach to SALT where you are soph. I would say that anything which encourages speech has to be worth it because so much of it is about the physical training of the mouth to make the sounds, regardless of language.

I'm not sure what everyone else has had but ours has been on and off over the years, mainly because of the very high turnover of staff but we've had some excellent input from time to time and of course, it is now handled through the school.

We use a 'whole communication environment' with ds1 - photos, makaton, speaking and some exercises (encouraging him to say 'pah' strengthens the lips to help with tongue control). Early on we did a Hanen course too which was helpful - will check the website address in a mo.

Here it is - www.hanen.org

We're doing a Hanen course and finding it very useful

Thanks marmoset. The funny thing was that the actual therapist that Sam had at the beginning of the year was of the same opinion as me. That his therapy shouldn't stop because at least he was getting to do the exercises, and also he goes to a Spanish nursery and hears Spanish around him on a daily basis but when he's at home he's surrounded by English. This means that he probably hears just as much Spanish as he does English, which can only be a good thing. We'll see what happens next week.

Wow what a lot of useful info is on here today!
Have just had a look at the Hanen website - marmoset and sc can you tell us a bit more about what it did for your families? do they use makaton or is it more about the principles of listening?

Soph was thinking about makaton and you - and thinking that would surely be a good way to help Sam make sense of using Spanish and English?!?

Have had our first proper session at a specialist toy library today which went well. A lot of staff there which was helpful and I met the physio and SALT who wil be assessing him in a few weeks before the first CDT. sc and marmy - do your children have CDT reviews and if so how have you found them?

Our social worker has dismissed us, which my health visitor says is because I am trouble!

Sorry I've not been back to this thread, RL kind of takes over sometimes!!

Well C's appointment at the hospital went well, they don't want to see her for the next 6 months, which is brilliant news :D She is now just over 12lb, so she's nearly on the 25th centile - whhooohooo ;-)

She turned 6 months last week and is now desperate to sit and stand up, she loves it and is doing really well, she has good muscle tone in her legs, which is a bonus xxx

lebel Brilliant news on the hospital front, it sounds as though she is doing really well. It is such a boost when you get a break from hospital visits!

Afternoon all. Presented Sam's certificate to social security this morning. We have to wait until January before we get any money and it's nowhere near as much as we were lead to believe. We can get 1000 euros a year, paid twice a month (Jan and July). However, it's better than a poke in the eye with a sharp stick, as my Dad says

lebel - that's great news.

I'm so looking forward to the summer hols as Sam won't be going to as many appointments as most people over here have August off. However, he is supposed to be going for something else during July but we'll wait and see.

Hello all - hope you had a nice bank holiday. We had a weekend away which was very nice - first proper family walk for ages - everyone trailing along at various speeds

fizzy - hanen was good for making us think about how to help language along and a lot of it seemed like common sense but just set out in an articulate way. we had exercises to do and because a group of us did it, it was a nice way to meet other sn parents. we do use makaton a bit but my ds sees himself as a talker and has always resisted signing back! still, i think its pretty useful. i'm trying it out on dd too. what's cdt?

lebel - how brilliant is that?!

soph - i don't suppose you can get dla even though abroad?

Hi marmoset - both the boys were born here and we haven't been resident in England for 9 1/2 years so can't get anything.

Great to hear you had a good weekend. We go on lots of saunters too

Hello all.
Lebel - Hello again, am so pleased all is good with your baby's heart. She sounds so active! We are nowhere near sitting up without support, but we have mastered in the last week or two rolling over (and over!)

Soph what a bummer about the benefit, is there nothing else you are eligible for? seems most unfair especially when you are losing money because of all the appts [gggrr face]

marmoset - A CDT is a child development team(?). So the littlest prince has assessments by the OT, physio, SALT and paed over the next couple of weeks and then they will all come together with us at the beginning of July to put a plan together (I think!). Does your ds have these?

portage again tomorrow - this time with his brothers in attendance as it's half term. I fear it will be carnage

Hi fizzy - a CDT sounds brilliant. We do have something similar now as it's done via meetings at school but in the early days, it wasn't quite so co-ordinated. That sounds like really good practice in your area and should hopefully avoid you having to repeat the same info over and over again .

I have found most meetings like this are very friendly but I make sure that I take a list of things I want to know as there are so many professionals to hear from, you can forget your points and have a Homer Simpson moment (Doh!) on the way home if you forget to raise something.

We also had the early years education people involved from a very early stage and a funded full time nursery place in the local mainstream school from age 3 so it is worth checking out what education services they'll include in the plan as it develops.

Well done to roller boy

soph - that's a shame about the benefit. Roll on the summer hols. As ds is 12, we are now on annual reviews for various things (general paed,thyroid, hearing, eyesight). The NHS has a lovely habit of scheduling all of the check ups in different months and I keep meaning to try to consolidate them , although the fact that the check ups are there is better than a poke in the eye with that stick. Hopefully, it would make sense to all if your health people could schedule everything for you when you don't have to be at work.

Morning all.

Nope, we're not entitled to anything else and, yes, it is unfair

Well I'm off to see the speech therapist in an hour to try and get Sam's speech therapy re-started. Please send me all your positive vibes and good luck & lots of finger-crossing

fizzyanddizzy - well done to LO with the rolling over. Sam is nearly sitting completely unaided now and when he's in his play-pen and cot he does try to get on all fours. However, the majority of the time he just sticks his bum up in the air and keeps his head on the mattress and pushes himself around. It makes for some very interesting hairstyles

Morning.

soph good luck with speech therapist, fingers crossed for you. Go girl! Am chuckling at the thought of his hairstyles.

fizzyanddizzy Yay for rolling over.

marmoset Glad it isn't just us where the hospital appointments don't coincide. We can two different appointments the day after each other at the same hospital which takes nearly an hour to get there. Grrr.

Am off to London this weekend to see Dirty Dancing with a friend, girls only. Very excited! My friend is child free and she looks a little worried at just how excited I am to be away from home for a short time.

Hi slightlycrumpled

I get ridiculously excited when I go out with friends without DH and the children. It's like letting a small child loose in a sweet shop, you just don't know what to do first People without children just don't understand

Rock on SC - child free time AND doing something exciting. I am feeling giddy for you. I have the prospect of a child free evening but think I am just going to watch the last ever ER and go to bed!

Soph - big fat positive vibes coming your way. go get 'em

Marmoset I think that is really poor practice in terms of the appts, have you spoken to anyone about it? I wonder if a little friendly word in the PALS ears would do anything...

portage was as I feared. Carnage

Ooh, slightlycrumpled - i am quite green !! Have a brilliant time

Hi fizzy - yes, I think I will have a word and try to sort that out. It's not too bad at the mo because the hospital is quite near but we're getting a brand new one far, far away in the next year or so and I can't be doing with it then. Did you not sellotape your children to the floor for portage?

soph - my ds1 used to have the most incredible bed head hair when he was tiny. He got bronchialitis one year as many kids do and was admitted to hospital and I have a lovely mental image of him sitting up on the trolley in his little vest and an explosion of hair on the back of his head as everyone cooed over him. Now he has the best behaved hair out of all of us!

Have you all checked out the pictures on this thread? "Baby - no longer- Eidsvold has been asked to appear"
Eidvold's DD (who has DS) surfs!
I wish I could surf too...

Yes - I saw that. What a star!

I'm back. Thanks for all the good vibes. Unfortunately I haven't managed to get his speech therapy restarted as the therapist is completely convinced that he's far too young. He says that with NT children they wouldn't start speech therapy until they were 3 but Sam will start his at 2 because of the DS. However, we do have an appointment in November and he said that he will restart with the speech therapist then to carry on the exercises for his mouth. Why they can't do that now though I'm not sure. At least he knows he can't get rid of me though and I will keep popping in to see him as I don't want Sam to lose out just because we don't speak the language fluently.

He was very positive about the bilingual aspect though, which was nice because he didn't seem convinced last time iyswim. I gave him some information that I'd had translated and even though he may throw it straight in the bin he did thank me and said that he was interested in any information, etc etc.

So even though I didn't really achieve anything I feel better. Of course, I still understand that the earlier you start things the better but I'll carry on with his exercises at home & November will come round soon enough as we all know how time flies

Hi soph - sounds like a good plan. And time does indeed fly, with a jet pack on .