An urgent question to all parents of children with Down's Syndrom

[emkana]

Dear all

you might have come across my other thread - I had an amnio on Monday after there being three soft markers for DS on my ultrasound. My initial reaction was that I couldn't go through with a DS pregnancy, but since this morning my feelings have completely changed - I suddenly feel that this is my baby and he is ours and... it's hard to explain.
But I'm trying to look at it from all sides and I was wondering if you could help me by telling me in complete honesty what's the hardest part about having a DS child. I've read so much about the positive aspects, and they've made a deep impression on me, but I need to know very clearly what to expect for the worst - not to justify having a termination, because atm I feel I couldn't have one (but I'm not sure), but to just be prepared...
if some of you feel that you could help me with this I would be very very grateful
Thank you

when will u get the results?

maybe this afternoon, otherwise tomorrow

I can't talk from personal experience but close friends of mine worry about what will happen to their child when they are no longer around. (I appreciate that all parents worry about their children but for an individual with DS or other disability there is an added dimension.)
Saying this, I have worked closely with adults with DS who have lead very happy, fulfilled, independent lives in their own/shared homes.
This is probably no help whatsoever but I'm sure parents on the SN thread will be able to assist you better. I wish you all the very best. What a difficult time for you all.

emkana, if you like you could phone me? We could talk in German... but I understand that might be a bit much considering the circumstances.

Ok, the hardest thing for me - at this point in dd2's life - is the feeling that she really got the shitty end of the stick. Dd has moderate hearing loss and it's just been such a battle with the NHS, making sure she has the right provision, the right type of hearing aid, she's due to have a small operation soon and the funding request for that is being arsed about with.

Another thing I find hard is her lack of speech. Because of her hearing problems it's delayed even for a child with DS, she is just starting to put two words together at 4.5 years old. She's good with Makaton though (sign language, easy-peasy to learn). I really wish she could talk. Everybody has assured me that it will happen - I've heard from people whose children didn't talk until they were 6 and are running up huge mobile bills at 15 - but it's a rather long wait.

When dd was born the hardest thing was feeling that I was now forever seperated from mainstream society - whilst in the past I would look at a family with a SN child and think 'thank god that's not me' I was now the person being looked at. I don't feel that way anymore, sometimes I feel smugly proud for having a slightly exotic child .

I don't worry so much about what will happen when dh and I aren't around anymore. Dd2 is the sole beneficiary of my parents' will so she will never be lacking for money. I also have two other children and they're all so close - the three of them are a real little gang and always play together - that I think dd2 will always have a brother and sister looking out for her. Dd1 frequently says that she really wants dd2 to live with her (ok, she's only 6 - but it's nice to hear anyway).

I have had phases of finding things very difficult and wondering how life got like this, this was mainly due to problems we were having with the NHS at the time or with the LEA. You do have to be on the ball both medically and educationally, it's a bit like a job.

But right now things are going very well - dd2 is at the same mainstream school as dd1 - she's very popular, gets invited to all the parties (this was a huge worry for me before she started school) and is generally a delightful child.

Please ask away if you would like to know more!

just wanted to add - dd2 was also born with a severe heart defect. Now, that really was a very difficult time, like being kicked in the teeth when you're already on the floor! However, in the grand scheme of things it was only a short while - her heart was repaired fully (the heart defects common in kids with DS are usually fully repairable in a single, safe operation) and a few months after the surgery her heart was as good as new.

i personally feel that having a child with a disability sint a problem in itself, its getting the help from the local auntority, sorting out assessments etc thats the real strain.

Emkana, I'm a bit hesitant to post as I don't have any personal experience, but I do know an adult with DS.

He's slightly older than me (mid-forties) and although he's perfectly healthy and happy in himself, his parents (who are in their 70s) have recently been finding it difficult to care for him.

Thinking of you.

Do really you only want to hear from people with firsthand experience, Emkana? I could say a lot about my cousin who has a child with DS, but in the end it's only what I see as an observer.

Hi emkana. I read your other thread but didn't feel I had anything to say that hadn't already been said, but have been thinking of you. My younger brother has DS, so I can give you a sibling view. He is 21, I'm 34. He's the youngest of six. I can honestly say that there have been no disadvantages to having him as a brother. As a family we've benefitted enormously from having him around - esp in the range of people we've met through him. I'm really pleased that my own children will grow up having him as an uncle because I think it will give them a more rounded view of the world.

I do worry about the future. What he would like most of all is just to have a regular job, like his brothers and sisters, but I don't know if that will be possible and that saddens me. Our experience is that society caters well for these kids when they're in the education system but is not so accepting afterwards.

As for when my parents die the plan is that he will live with one of his siblings families (if that is what he wants) but my parents never expected this of any of us.

There are a few mums with DS children on here so I'm sure they will be able to give you the broader picture. It's hard not to paint a rosy picture sometimes because when you are close to someone with DS you tend to feel quite upbeat and positive about it.

Hope you have news soon and are able to move on - it's the not knowing, I think, that is worse. Take care.

In all honesty I think it can be very daunting looking at adults with DS! Things have changed so much in the 4 years I have had Amelia, there are so many early intervention programs now that weren't available to the older generations of children with DS IYSWIM.

I thinks it's the battling with local authorities that makes our lives harder. The fight for DLA, a larger buggy, nappies, Speech & Language therapy..physio...unfortunately the list goes on.

My bug bear was not the fact that I wanted Amelia to have all these therapies on a regular basis, but giving advice from an early age about some of the exercises I could carry out in our daily routine.

It's just a way of life now. We start our SALT exercises as we brush her teeth, we do physio walking backwards and forwards to nursery..you should see us marching to the grand old duke of york!!!

Communication is probably the worst aspect for Amelia, who is generally a very healthy little girl. She signs beautifully.. over 200 words and TBH I've stopped counting. Her speech is slow but coming along now. Still unclear but we do communicate most of the time.

There are a lot of "ifs and buts" and there are a lot os conditions that are more common in children with DS. Such as glue ear, eye sight problems, chest infections. But you have to look at it from a different perspective, an NT child can suffer from those issues too and a child with DS may not necessarily. Each child is so individual.

I've said before, Amelia is hard work. I throw all my time and energy into her..but mainly because I want to, it's the way I am. If I didn't I would feel that I failed her.

Sorry for waffling on, there are so many emotions here I know. Glad that you are considering your options...but it is still very much down to you and your family. {{{{{{{hugs}}}}}}}}Dingle.

Thank you very much for answering.

Update here