Any parents of children with Down Syndrome?

[CheerfulYank]

DH and I are considering adopting a child with DS. (Well...I've already considered and am ready to jump in with both feet, DH is a little more cautious. :) )

DS has always been sort of a non-issue to me; my mother was an SN aide and I grew up knowing lots of kids who were not NT. (I'm an SN aide myself now, though the kids I work with are primarily autistic or FAS.) When I was pregnant with my son we declined the tests as we had said we wouldn't terminate if the baby had DS. I also have a cousin with DS who is lovely; he lives quite a ways away so I don't see him much, but he is fabulous and his parents just get on with things.

I guess I'm wondering what daily life is like? (Obviously I know all kids are different so there is no one answer to that! :) ) I told DH that it might seem overwhelming at first, but if we just adopt this little guy and take things a day at a time, we'll be fine.

CheerfulYank, Portage is oddly named but is one of the therapies offered to some children with learning disabilities - like all these things, the area in which you live dictates what therapies are paid for and provided: www.portage.org.uk - you get home visits from them and then get given a variety of 'homework' to do with your child, who may or may not co-operate. Typically children with DS also get Physiotherapy and Speech and Language Therapy (SALT). These are alongside the paediatric check-ups (general) and then other medical appointments for specific problems (heart, eyes, ears etc). There is good info on the DSA (Down's Syndrome Association) website about the check-ups that should happen in the first 1-5 years of the child's life.

Sorry 2old2beamum, just realised you explained all this!

That's ok BigCC your explanation was far more comprehensive than mine.

so what's supposed to be in place after 5yo?

Oh, thanks.

I'm American so it's a bit different...here they have the birth to 2 program, where people come to your house to work with the baby (physical therapists and things) and then at 3 they go to the SN preschool and then mainstream school from there, with aides and SN teachers and P and OT.

school

Hi Devientenigma - thanks, as always, for the tips. We've been trying picture re-enforcement with her for about 6 months, but she really doesn't get it. I'll keep on trying, as I know it can work for some children with DS, but at the moment you can tell the comprehension just isn't there.

I may have been premature with my optimisim last week, or just having a bad day today, but I have to say I'm sitting firmly on the negative side of the fence right now!! :( My DD woke me up at 3am again, for the 4th consecutive night, with breathing problems. Last night was so bad that she threw up all over me as she was so stressed by the whole experience. I then found out that the 3 mths behind assessment that the nursery told us she received last week was completely wrong & the actual level the LEA assessed her at is over 12 mths behind a 'NT' (and she's only just turned 2), the report also mentioned how some of the skills she has have regressed since the last assessment & she is "very stubborn and struggles to take directions".

I'm now off to get a serious chocolate fix before going to bed early to escape what has been a really rubbish day!!

devientenigma you do talk a lot of sense and I realise I am incredibly lucky so take care.
P.S. I am not creeping not in my persona.

Proudmum can I ask what breathing problems? do the profs know about these and the lack of sleep? both could be making the child regress before worrying about other problems. If it helps a year behind isn't too bad, seems a lot but be aware the gap could get bigger. Yes keep on with the visual reinforcement, however the lack of sleep etc might not be helping. As for the stubborn and struggles make sure someone helps with this now rather than later, otherwise it spirals to the point of no return and you could end in my position..............which is not nice at all. Does she like to look at the face? if so you could start with happy and sad alongside the 'no', make these very dramatic. Sign as well. As for the chocolate fix........DON'T otherwise you will also end up in my position......big and fat!!

2old not too sure about the confused school lol

OK was being a bit sarky but I'm sorry (DH would be amazed I said that)Loved the big and fat I thought it was a Norfolk thing.

lol, he has been signed off school and has a home tutor and hour per day 4 days per week

I am absolutely staggered devient He surely has a right to an education the same as every other child regardless of his needs......4 hours/week [anger]

No

WHAT?

Want me to call someone and give them hell for you?!

Are you getting any respite care?

Hi devientenigma - yep, they know about her breathing problems, as she's been hospitalised for it a few times. In fairness yesterday was an extreme case. Normally it's not that bad, we're lucky that we've only needed the oxygen mask/emergency ambulance the once, & it only really affects her at night when her cold (which she has permanently) is really bad and her airways get blocked. Her heart condition obviously doesn't help, but for the most part we've learnt how to calm her down so her breathing becomes more regulated and we have a humidifier in her room that seems to help most nights. She's also under consultation with ENT to try and resolve the blocked airways problem.

We're lucky that she is mainly a very sociable little girl, so for the most part she likes, and responds, to signing, or at last her own version of them, which gives me some hope re: her understanding levels. The challenge is that whilst I'm pretty sure she understands 'no', she chooses not to listen most of the time if she wants to do something; if she's in a really cheeky mood she'll say & sign 'no' whilst continuing with the thing you've told her not to do! I've found sitting in front of her and maintaining eye contact whilst I say & sign 'no' can sometimes help, but not always.

We have an all agency meet in a few weeks to discuss her progress, so hopefully that will help.

Plus the little sweetheart slept through until 5am this morning, so I'm feeling more upbeat about life today.

proudmum definately change the word no then, use don't, maybe or divert. Or like you say always gain eye contact, tell her to look and listen pointing at ears and eyes.

CY and 2old he's being let down across the board, not just education and it's all because he is hard to engage with and lacks the accountability. Nothing works with him and he doesn't have anything that motivates him.

devient you make me feel so grateful for our package of care.
CY we get 5 nights/year but we do not need anymore as they are very undemanding. But we do get 5 nights every 28 for our 2 youngest as they have complex health needs which makes me so cross for devient The was at laptop so please don't get angry squad in.
Proudmum glad your LO is a bit better and you have had some sleep. Also agree change no, I found a cross look worked wonders. SW said I was a control freak moi?

Never be glad about what support you get, they always dish out the minimum anyway. Always try to push for something more even if it's small. Proudmum get the SW to change her opinion of you, your not a control freak, just assertive and proactive, throw in a couple of buzz words lo, that is unless you get on with her and she's joking. It just could backfire later on.

proudmum - tell her what to do do, not what not to do. If language and understanding is limited it really helps. So for example 'hands down' rather than 'no' as you're whacked. DS1 always found the word 'no' hilariously funny.

the challenging behaviour foundation is really good, lots of very useful resources.

In ds1's case (severely autistic, non verbal aged 12) I have found the most important things to be (1) ensure that only people who know what they are doing work with him - as much as possible. Most of our entrenched difficult behaviours have come from other people fucking up basically. Eg lots of pinching because people would insist on yelping which ds1 thought hilarious. Special school has really helped with this as 98% of the staff in his school respond appropriately to CB's. (2) Very consistent and very firm from an early age. Not mean, but just firm. And not being afraid of screaming. This is probably the least important in some ways (3) Working within ds1's developmental level. Now he understands for example 'if you pinch then no sweets' we use that, but 18 months ago that would have been meaningless, and responses had to be different. Once he understood consequences like that behaviour management became easier. (4) having a good understanding of reinforcement - and adapting our behaviour to that. So for example if he pinched NOT doing the obvious thing of shouting at him because he really rather likes being shouted at and you've just lined yourself up for another week of pinching.

Of that list I think (1) and (4) are the most important.