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.

Like you said every child is different and there is no one answer to that. Yes I have a child with DS. All I can say is remember your phrase.

As the sibling of an adult with DS, I would urge you to think long term - services for adults with LDs are poor and are being constantly cut. Who will care for your child when you and your DH are no longer able? If you go ahead and adopt a child with DS - which I think is admirable - please do not underestimate the impact it will have on your other DC's lives - in childhood and adulthood.

As another parent I would agree it is no use generalising about children with DS as the range of health issues as well as cognitive issues is wide. Our first year and a half as parents has been somewhat different to those of our friends and our daughter has few health issues (no heart problem) - nevertheless there are a lot of checks to go through and a lot of talking to healthcare professionals about the future. However, we have met a lot of very nice people in the SN community as a result and in particular some great foster Mums. Wishing you luck whatever you decide.

p.s. you may want to look at www.futureofdowns.com, which has a whole section for adoptive parents on it - they are a friendly and helpful crowd.

Thanks for the answers. :) BigCC I'll check out that site.

AgentP that is something to consider. I've talked to my cousins a bit about this...there are six siblings in all; it's the youngest with DS. They all seem very matter of fact about it, that they will have to make decisions regarding his care when their parents are old.

I guess...I've always kind of felt like there are no guarantees anyway...I know many people (due to my work) who started out life perfectly "normal" and then through accidents or disease, did not remain that way and had to have carers as well. (Does that sound stupid? I'm finding it hard to say what I mean )

DH has said he is willing as we would have welcomed a bio child with DS, so why should the fact that this one's not "ours" yet be any different, etc. But he is definitely more apprehensive than I am. :)

matter of fact and decisions about care in later life, tells me, they have either been protected to the majority of issues or problems so far have been easier (for want of better words) to deal with.

My son was not gonna change our life, he was going to fit in around us and we started to plan the future, he is also the youngest of 6. How wrong was I, life changed from day 1 and steadily and rapidly went downhill and now life has changed dramatically drastically.

Yes I have been told we are in a minority but is it a risk you take?

I'm not sure. He is only eight now, so of course issues could crop up. But he had severe problems when he was younger due to diabetes and gray platelet syndrome, among other things, and once those things were under control my aunt said "compared to this, the DS is not a big deal."

His oldest sisters are in their 20's and have both talked about schools and programs in their towns for disabled adults, if Ben wants to come live there when their parents are older.

But it is definitely something to think about, thank you so much for your input! :)

Hi CheerfulYank thought I would add my twopenneth. We adopted 3 with DS now adults. I can only speak from our experience it was the best thing we have ever done (not a sloppy person) DS 32 was on the lower end academically but he is severely deaf and has epilepsy however is one of the most thoughtful caring, and kind person I have ever met. The 2 girls now 27 & 23 went to mainstream school and got 2 & 3 GSCE's apiece (not A*) they have complex heart conditions and other issues. BTW we had no problems when they hit adulthood. We have travelled the world with them which they loved. But i must admit they have no behavioural problems but we were firm I echo what your aunt said. Good luck

kindest not kind

Thank you 2old! That made me :)

we are also firm with our son, however he has a need to be in control, he's demanding, aggressive etc etc He has been under the behaviour team for 9 year and no change. He suffers extreme anxiety to the point he won't leave the house, he hardly sleeps, he has been signed off school also has complex heart problems as well as other medical and neurological issues. Extreme challenging behaviour is also on his list of dxs. Most behaviours are the cause of other problems iyswim. He can't be bribed, redirected, incentives don't work etc etc Punishment of any kind doesn't work for various reasons, he needs 24/7 supervision as he is a danger to himself and others.

Yes I am defending my position and my son but you don't know which road you go down until you are travelling along the path.

Hi CheerfulYank, I have a beautiful DD who has DS. She's only just turned 2, so I still very much have the rose tinted glasses on re: the future. We've been very lucky as, for now at least, she's not that far behind other 'NT' (last assessment put her about 3 months behind) and her heart problems are now resolved. She is definitely the love of my life & makes me happy in so many ways every day.

However, I echo what other people say re: the endless appointments, the lack of general support out there & the sheer hard work of having to fight constantly for every bit of support my DD needs, even though we're being told she needs it.

As long as you go into this with a healthy dose of realism of exactly how hard it is, then good luck - I think it's lovely that you are considering it! So far the rewards for us have definitely out weighed the negatives.

2old2beamum - I just wanted to say that your posts always make me smile! They really do give me hope for the future! :)

devientenigma - I'm so sorry it's been so tough for you. Do you mind if I ask you what age you started to notice that your DS started to have sleep problems / lack of understanding re: being told off? My DD is starting to show some of these signs & I was curious as to whether it's an age thing (i.e. terrible 2s), whether she's inherited my stubborn streak or if it is a more serious problem....

proudmum79
and CheerfulYank

There are four little ones (all kindergarten age or so) with DS in our small town and I know the parents fairly well, so I could talk to them and see where to go for support, therapy, etc. :)

There is quite a spectrum, isn't there. The four of them are lovely (the little boy is quite cheeky sometimes, however!) but definitely different in their abilities, as are all children of course. The little boy and one of the little girls are much farther behind, whereas one of the other little girls is almost on track with her NT peers. Again, no guarantees in life, eh? :)

I'm sorry proudmum I would rather not discuss this further here. It's clear I have been singled out of this discussion.

Devient I'm so sorry you feel that way! I really appreciate your honest answer to my question.

Not that everyone's not being honest, I don't mean that. But it's really good to hear about a variety of experiences.

Hi Devientenigma - I'm so sorry if my question offended you in anyway, that really wasn't my intention. I know you have always offered great advice to me in the past & I really appreciate all the help you've given.

devient I am sorry if I have offended you, like you I said it how it is, but I do know many parents who struggle with DS.I think we were more fortunate when we adopted as our homegrown children were older 10-14 when number 1 came along so he had 5 "parents". Also I am a paediactric nurse and midwife (I was at his delivery) so no health problems bothered me, and it really is who you know not what you know. Are you getting enough support.
Would never judge you,I am not walking in your in your shoes, take care.

I'm a sibling of an adult with DS. Agree with AgentProvocateur and devientenigma. My db is middle aged now, lovely, very physically active, but has severe/profound special needs and has to have 1:1 care.

He was still at home (albeit with some day care) and totally dominated my parents' life. They loved him to bits but they could have almost no life outside him and the immediate family. Almost all their friends dropped them when he arrived. Even their families had a pretty hands off role. This carried on until my mother hit 80. Only then was funding found for him to go into residential care. The care was not adequate (parents' stress was raised enormously) and when our mother died 5 years later I felt glad rather than sad - because she didn't have to worry about him any longer.

In the current climate resources for SN are unlikely to get better.

Think about dementia too and what provision will be for helping to look after him if he gets it at a young age - from alzheimers.org.uk :
"People with learning disabilities have an increased risk of developing dementia as they age than others. People with learning disabilities also generally develop dementia at a younger age. This is particularly the case for people with Down's syndrome: one in three develop dementia in their 50s"

It's a lot to think about. Good luck - I admire you.

Bluegreyeyes, I sometimes lie awake wondering what the least worst option is re dying, and I've decided it would be best if sibling died then my mum died the day after. It's been such a worry all my mums life, and there have been problems, like your brother, with residential "care". I would love my parents to have some carefree years towards the end of their life, but the constant worry about future care and health issues is a worry and burden for us all.

I'm sorry but it was the flowers to those with the positivity that told me my views are not welcome. Typically from a professional pov overlooking the worst case scenarios.

It's not right how DS related groups/threads etc are all hearts and flowers and relentless positivity. It's not like that for everyone and that's not being negative either, it's reality!!

It's not right people including professionals wanting to airbrush mine and others experiences out of existence almost. If someone is choosing that path, then it's particular important they don't just focus on best case scenarios.

The question didn't offend me, I'm happy to help anyone so they don't end up in our dire predicament. Proudmum he had a lot of his issues from birth. Anyway a quck fix for you may be changing the way you are 'telling off' use visual support and makaton to get through. Keep instructions short and to the point.........e.g no! picture of a big red cross. Then progress to no hitting! use picture reinforcement etc If you get portage you could ask how they would do it or they could give you the visuals. If you think it could be terrible 2's I am assuming your child is more on par with the NT child of that age? Apologies if not. If it helps my son was on par with a 12 moth old at 4yo and now 11yo is averaging 3 yo.

It's sad to hear the sibling pov's. Makes me think of my daughter and her position. Family have already said should anything happen to us now he is too much hard work for them to deal with so haven't a clue what would end up with DS. However SS and the behaviour team have threatened to have him institutionalised a few times, so yes, we do know where he will end up. DS is a 2:1. Better known as challenging and complex.

Agent and blue and your parents, I have much respect for, I hope I can carry on as long, the bottom of a cliff has been looking promising for some time, not that I will, however someone in my position who isn't as strong could be tipped over the edge by the lack of empathy within the DS community. To save my sanity I have deleted over 70 DS families and withdrawn from every DS group on facebook. We do not have support from the LA as my son lacks accountability!! So for us no support anywhere.................the sad fact is I won't be the only one!!!

Devientenigma, its not right that you've a lack of support from the DS community or have to put up with relentless and irrelevant positive comments. It is clearly not a bed of roses for anyone to look after a child with complex needs and its not helped by the 'they're all so affectionate' brigade or indeed by those who have bottomless faith in the power of portage or whatever. I have a suspicion that people are so keen to be positive in order to counter the majority who would have had a termination if they realised their child had DS. Whilst understanding their desire to do this, the desire to gloss over things is just exaggeration in the other direction and given our children's problems, adding BS to them is not going to help.

Devient please don't feel as if no one wants to hear what you have to say. I really, really want to hear about all kinds of experiences, not just the sunshiney flowery ones. :)

I may have a bit of a case of rose colored glasses about this. (I am pretty sickingly upbeat most of the time ) The adults I know with DS were pretty independent; I knew a group of them who lived in a house together and rode the bus to work every day. Other than that, they've all been young children.

Thanks so much for your replies; it's given me a lot to think about. (sorry if anything in this post doesn't make sense, I'm stricken with a particularly wicked strain of strep throatvand have been fever-addled all weekend)

What is portage?

Ah and yes, the "they're so affectionate brigade". Ugh. Because everyone has the same personality.

Portage is a scheme (well it was years ago hence my name) usually run by the educational psychology dept and they came into the home and teach kids by breaking tasks down to basics, if I remember correctly it was ok ish but I liked the person who visited, don't know if she did any more than I could.
As for "they are so affectionate and they all love music " as you say UGH "BOLLOCKS!" is my word.