Anyone else have a baby with Down's?

[RingEir]

My son is 6 months old and is doing very well but it would be nice to have some company/compare notes/share experiences.

Looking forward to meeting you:)

Just a quick Hi, my son also has down syndrome although nearly 11y so not so much of a baby x

Hi I am mum to 3 who have Down Syndrome all now youngish adults (23 - 30) and it has been a delightful journey. My 2 daughters went through mainstream school getting 3 GCSE's apiece. Not A* I must say and sadly no paid work, but hopefully attitudes will change for your little lads.

There are more of us out here - I'm proud Mum to LittleCC (DD with DS) who just turned one and would be very happy to share either on the board or PM.

Hi, I have a beautiful 21 mth old DD with Down's

OP, it doesn't seem right there's only five of us so far, so I thought I'd post again and let you know we have had a happy experience with Little CC, she is healthy, very jolly and we've had good support from local care providers. She had a rough start - was poorly for two weeks and couldn't BF, but picked up quickly once we got home. I knew no-one with DS prior to meeting my DD, so it has been a colossal learning curve. She has been responsive, in her own time, to most things we've tried to encourage her to do. How have you found your care providers? I hope you've had good support.

Thanks BigCC and to everyone for posting. It would be great to hear your stories, I'm sure I have a lot to learn. 2old, well done to your three!

DS also got off to a rocky start, 2 weeks in intensive care when he was born. I did (and do) manage to breastfeed thanks to my sheer bloodymindedness and great support from a lactation expert (hospital were useless). We went through a couple of horrendous months when he wasn't putting on enough weight, but in the last two months has gained almost two kilos:)

We are part of an early intervention programme and have three sessions of therapy a week (speech, physio and stimulation) which is going very well. We do a lot a work at home too, exercises and so on. It's pretty gruelling sometimes but worth it when we see how much he is progressing.

Now my question is, are we ready to move on to solids? DS seems enthusiastic, I have fed him a couple of spoons of porridge to see his reaction and he certainly didn't reject it although I don't know how much he actually swallowed. He can't sit upright by himself though, which is supposed to be one of the signs of readiness, and I am reluctant to move on to solids before we need to as he seems to be doing so well on the bf alone.

Oh, and I am going back to work on Feb 1st which I am nervous about.

Any suggestions?

HI RingEir - your DS sounds like he's doing really well!

My DD didn't sit up on her own until 8 mths, but we started introducing solids at about 6-7 mths, like your DS my DD is a real enthusiast when it comes to food! We really struggled with finding a good highchair (despite trying virtually every shop & buying a ridiculously over engineered one that promised all sorts of wonderful things! ), so ended up using her Bumbo until she was about 1 for feeding. Once she was fully stable sitting we bought the standard ikea one, which I have to say is brilliant; DD loves it, she claps her hands & swings her legs whenever we put her in it - HTH

Good luck with going back to work, how are your child plans going?

Hi, I have a DS who was two on Friday. He wad diagnosed post nataly. He's doing really well. Am on phone will post more later. Congratulations on the birth of your LO!

Hi RingEir

Wonderful to hear your little man is doing so well and ready to start tackling solids.

Can I suggest you get Physio to speak to OT on your behalf and request an assessment regarding your little boys feeding requirements? After weeks of struggling with high chairs & resorting to his car seat(!!) we were provided with a sunbeam chair for feeding. They are incredibly supportive for our little ones and are ideal for feeding and playing til their core strength improves. OT should be able to provide you with something to make weaning easier.

I have a little boy, Niall with DS. He's 17 months and an absolute superstar. Like yourself, we had a tricky start in life and he has physical complications but he goes from strength to strength and is doing great.

Best of luck with going back to work....its tough but I'm sure you'll manage it fine!

You might like to try www.futureofdowns.co.uk It has a fairly active forum made up of us mums & dads with babies with designer genes...hth

All the best x

Proudmum thanks for the bumbo seat suggestion, it looks like a good solution and Impress I will look into the sunbeam, but I don't think we are entitled to anything like that here - we live in Spain. Physio says his core strength is good enough, it's his balance we need to work on.

Re: back to work, DH and I have flexible hours (we both work at university) so we are going to try to look after him between us, with a bit of help from a childminder. I would also like to keep up the bf, so it's going to be tricky, especially as DS refuses to take a bottle. At least he won't take it from me. The thing I am most stressed about tbh is our sleep routine. At the moment, DS sleeps with me, and often doesn't go to sleep till 12 or even 1am. It's fine at the moment because I can get up whenever. But trying to get into work for nine will be a challenge. I guess it's the same for everyone though.

Love the name Niall btw, we considered it for DS but in the end settled on Killian.

Looking forward to hearing more from you Wipsglitter.

my bit of useful baby info is, when the tongue protrudes, tap the end and it automatically goes back in, I used to say tongue away at the same time and now I just have to tell him now and then as it mostly doesn't protrude anymore.

Hi RingEir Ds, who's just turned four has DS. He's a typical little boy full of energy and noise, loves his cars, footballs and bugging my older dd! He's at mainstream pre-school where he has a 1:1 and is doing really well and will be starting mainstream primary in September.

Health wise we've been really lucky, he has glue ear which is causing some hearing loss and ds wears hearing aids. Ds has weekly Portage and goes to a speech and language group and thankfully hospital visits are now mainly down to the yearly checkups ( That first year was pretty full on with appointments )

We also had problems with ds transitioning from bf to a cup/bottle. Like yourself I was going back to work and was worried that ds would go hungry at nursery. Our SALT was invaluable and gave lots of support and suggestions regarding feeding, types of cups etc. You may want to ask about a honey bear cup, it didn't work for us but other parents I've met thinks its fab

honey bear

Ds would take some milk from an open top cup, but not major amounts, we just found he had more in the way of solids. I stopped bf ds at 14months and even now he doesn't drink loads ( will now drink from both open top cup and sports type bottle)

Thanks for the tips. Yesterday I bought a medela 'calma' teat which is supposed to be good so we'll see how that works. I will check out the honey bear too.

Glad to hear your DS is doing so well Sonora, apart from the glue ear:( How old was he when you discovered that? Apart from a bit of hypotonia, Killian seems to have no physical problems, although we suspect some hearing loss in one ear. We are still waiting for an appointment with the specialist to check this, but if we don't get it soon we might go private as I don't want to leave it much longer. Also, well done on the bf. Was it hard for you? We had terrible trouble at the beginning and I could find very little info on bf children with ds, even in specialist literature. It seemed as though it was quite rare.

Hi RingEir Ds has had problems with his hearing since he was a baby, failed the newborn hearing screen and was referred to audiology/ENT. For a long time they did 'watchful waiting' which I think is Dr's speak for do bugger all!

The hearing aids are a recent thing and I do think they are helping....ds starting to say more....but signing is still his preferred way of communication. I'm just glad ENT are finally doing something as speech and language is one of ds biggest delays.

I was really lucky with ds and bf, he fed pretty much from the second latch and had no problems....funnily it was my older daughter I had the problems with, hard to latch on, took me months of tears and sore boobs to get the hang of it!

Sonora, it's so useful to hear about your experiences. When we voiced our anxiety over the hearing loss to the speech therapist, she said ds is not acting as though he has problems, but may be compensating with the good ear. We have a check-up with the paed next Monday so maybe she can refer us to someone. I'd like to find out for sure so that we can act now if there is something wrong.

I don't think teaching the kids to sign is a big thing here in Spain. I mentioned it and the speech therapist said she wouldn't recommend it as it can delay speech more. Also, we'll be trying to raise him to be bilingual, which will slow him down more, but I feel the advantages outweigh the disadvantages.

We also got the glue ear diagnosis and my DD apparently can hear very little (although I'm dubious about how accurate those tests are in such small children). I'm trying her on soya milk now she is over a year, as two other mums of babies with DS recommended it to me as a way of cutting down the glue. I can't see an obvious improvement yet, but she really likes it. I am also hoping to take her to see Mr Sheehan at the Manchester Children's Hospital, as he is an expert on hearing problems in children with DS - he has a son with DS - it would be good to hear if anyone else has been. Thank you for the honey bear cup recommendation sonora, we're getting on reasonably with sip cups and open cups but its a very messy business and I'm sure she'll appreciate how cute this is, I certainly do.

Hi again RingEir. I'm slightly shocked about your speech therapists comments about the signing! There has been lots of research by an organisation called Down Syndrome Education International (DSE) relating to how signing supports speech and language devlopment in children with DS.

DSE

DSE also has some great resources relating to development and speech and language. I also use their speech and language programme with ds (recommended and supported by our speech therapist)

BigCC have heard of Dr Sheehan, I think he's and advisor for the DSA?

I've always wondered about the no dairy, ds has always had really bad congestion and it does make his glue ear worse, especially during the winter....although his dairy intake is minimal so wonder if it would make a huge difference?

Hi Sonora, I think her point was that if a child is able to communicate by signing, they might not be as motivated to make the effort to speak. Anyway, in general although the health service is great here, where I live they seem to be a bit behind the times in ways. Don't get me started on my birth experience.

Thanks for the DSE link. I have heard of them, in fact I have already bought some of their books. And I think this is where I first read about signing for kids with DS. I will have to investigate further, but I doubt if there is any support for that here.

Re: no dairy, assuming your ds was ebf for the first few months, did the glue ear get worse after he was weaned?

BigCC thanks for the tip about Mr Sheehan. Like I say, I live abroad, but I would love to see a specialist like him.

Ds has been having cow's milk since I stopped bf and before that dairy in yoghurts etc when he was on solids. The congestion started whilst I was bf and before weaning though so wonder if it was my consumption that made a difference?

Was about to write a long post but was distracted by ds desperate for a game of football and have now completely forgotten most of what I wanted to say!!

With ds we found signing helped with the fustration he was having in expressing himself, he could say a few words but they were not always very clear. I think a lot has to do with the low muscle tone and how if affects the range of movements needed for speech and language development (we have some oral motor exercises that we do with ds to help with this) Just interesting how different views are within the same speciality (SALT) I guess you assume that signing is universal in it's use for children with DS.

Sorry to hear you had a bad birth experiences...I had a good birth experience but shockingly shite support after ds diagnosis!

RingEir, I forgot to mention, one of my good friends here (lives in London now) is Spanish and when DD was born, he was very reassuring in talking about how integrated into schools the children with DS were in Spain and how it didn't seem like so much of a big deal for children as a result. He was brought up near Madrid. Whereabouts are you roughly? BTW the mums I met who recommended the non-dairy were both at a DSE course last November in Portsmouth - for both meeting other parents and useful tips for DD, it was one of the most useful days I have spent so far.

I went to a DSE conference in Dublin a few years ago.....kept getting lots of 'ahah' moments and came away really understanding the way ds learns and how best to support him in his learning and development.

BigCC meeting other parents must be the best bit...I can listen to other peoples (and waffle on about my own) experiences and stories all day!

Thanks BigCC. Yes, in fairness I think Spanish society is very accepting and of DS and DS will most likely be in mainstream schooling. I live in a small city, not too far from Madrid. The people are very nice, but it's pretty conservative and the staff in hospital where DS was born were very traditional. Ideas like baby led weaning are unheard of, and DS must be the only child in the city who doesn't have a soother (how cruel of me!).

Sonora, I have heard of mums saying their consumption of certain foods affected their babies, but I have no experience of this. I can't imagine it makes much difference.

Hi Ring, supersoph has a child with DS and she is also in Spain x