Please tell me honestly what it is like to have a child with Down's syndrome.

[Chuckandvickys]

I have had an amino today after the harmony test came back as high risk. I know that this means that there isn't any realistic hope of the amino coming back as negative for downs.
I would really like some honest information about what it is like to have a child with downs. I have done a quick google search but it seemed to come back with uplifting stories of how wonderful it is to have a child with downs. I couldn't help noticing that these stories seemed to be from women with young children with milder learning disabilities. Against this I have a friend whose brother has a learning disability and she has previously told me how hard she found it as a child to have a sibling with ld and how hard she finds it as an adult to deal with her ageing parents and to take over the support role they used to provide for him. And her brother is pretty high functioning, has a job, girlfriend etc.
so I would be really grateful for accounts of how you find life with a child with downs. Whether emotionally, practically, what it is like for siblings etc. can you work? Will after school clubs accept your child? Anything at all!
We have absolutely no family support and realistically our friends are busy with their own lives. So we will be doing this alone and cannot afford paid help, not even a cleaner. I cannot afford to give up work. We have a soN who will just turn two when dc2 is due. Is it realistic to think we will be able to cope?

Here's a very quick answer whilst I sort out DD 2 for Guides! I'm coming back... X

Okay, my son will be 5 in December and has DS. When he was born he had a medical emergency that we hadn't seen or been detected in scans etc, he needed NICU and an operation (at 10 days old) so that part was hard and we just focused on getting him home.

Since birth his sisters, then 6 and 9 have adored him. He was not a difficult baby, I worried about him during his first year as he had some personal, medical hurdles to clear. But since then he has enjoyed good health.

We love him absolutely, I worried before he was born but the minute I held him, I knew we would always do our best for him but the surprising thing was how much he has helped us! He has a magical personality ( don't want to be twee, but he just has) he makes friends wherever he goes. He has just settled into mainstream reception after largely being at home and doing some preschool sessions. This was our choice as a family but I personally know lots of families with children with DS who work. Off the top of my head, I know two with childminders, two at nursery and one with a nanny share situation. Working is absolutely possible but because of medical needs, most children with DS end up with a lot of hospital clinic appointments during year one. After that it often lessens considerably.

I'm trying to be practical so I'll sum up his baby and toddler hood, his development has been slow/normal, dreadful phrase but so far he has followed typical patterns of development but v v slowly. So he sat later, crawled later and didn't walk until 2.5. Now reading this it might seem a bit depressing but (although at times I have minded v much for him) he has been a huge joy for us. His father dotes on him, they have a fabulous thing going, even though I hardly handed him over to anyone for about the first 6 months!!

His sisters wouldn't be without him, they have said so themselves. Because he is one of three children, sometimes he had to take a turn as a baby and he didn't mind one bit. He actually proved to be more flexible, more jolly, more good natured as a baby than his siblings, but I wouldn't tell them that!!

His speech is delayed, he is still trying to find words now but he signs very well and has always been able to make his needs understood. There's really a lot of resources and info available now to help children with DS with their learning. It's a good time to be around.

Please PM for any specific enquiries...I'm happy to answer anything I can.

You will cope, you will surprise yourself. A sibling will be a great motivator for your baby.

Sorry that's a bit garbled, back later x

We really do have a very "normal" family life. We do all the things we used to do before he came along. The stressful part has been the logistics around hospital visits, appointments, needing to be in 3 places at once, but those aren't limited to children with DS. In years of clinic appointments, I've chatted to many parents and many children seem very "typical " when born and then go on to develop problems in later babyhood.

There are no guarantees with any child, honestly, a child with DS won't always seem like a big worry...

Hello Chuck.

My ds doesn't have Downs Syndrome, but he has a genetic condition with many similarities - health issues (including heart and respiratory problems), low muscle tone, learning disabilities, limited speech.

He is 4 and has sisters who are 7 and 8, things have been harder with ds than they were with his sisters, and the practicalities of accessing support, getting a statement etc are a huge learning curve. But seeing the huge progress he has made from not sitting at a year old, not walking until 2 and a half, showing no interest in toys, completely non verbal....to the little boy I see now, going to school (a special needs unit within a mainstream school), communicating through sign, popular with the other children (for a boy with no speech, he has a great sense of humour!) who dotes on his sisters and has such huge determination - well that is one of the best things that has ever happened to me.

He has got health issues, and I do worry about the future, but we are trying to plan for the future so that his sisters don't have too much responsibility. At the same time, they are his best therapists, and they fight and squabble and cuddle and laugh like any other siblings. They have had to deal with some things that worry them (hospitals etc) but they are also very understanding and kind girls, I think because they have learnt a lot from their brother.

I don't work, and receive carers allowance, and I am afraid I don't know much about childcare wrt disabled children.

Whatever your decision, I wish you lots of luck over the next few days and weeks. My sister had a late termination due to severe health problems with her baby, and I know what an agonising time it was for her.

Thanks so much Perspective and hazeyjane for your detailed and helpful responses. Oh dear, started crying again. Doesn't take much to set me off just now.
Thanks again.

Chuck, just wanted to say, take the time you need but I'm going to keep an eye on here and my PMs just in case. Anything you can think of that you need an answer, please ask xx

it's such a hard time for you now x

I'm going now, honestly! But my first thought when I saw your thread title was; it's amazing, he really knows how to live life to the max! Xx

Will also keep an eye out, Chuck and will be thinking of you. X

Chuck and Vicky, first I have to commend you for actually taking the steps to learn about T21, you are one of few. I think you will look back and be grateful. I can only tell you that my daughter (15 months) saved my life and taught me to be a better person. Now I am an outspoken activist.

In a nutshell, YES, there are some difficulties, but there has been medical and educational advancements made in the last decade that have made a tremendous impact on our children's lives. For instance heart surgery is almost routine now and supplements taken prenatally can really have great impact on your baby's cognitive growth.

There are things you can do RIGHT NOW to help your baby's development!

If you check out my daughter www.delaneyskye.com, I have her milestones published and our regimen. Delaney is unusual because my partner informally started her therapies while in the womb by taking Choline and DHEA and then I had her enrolled in therapies before she was born and which she started at two months of age.

If you find her facebook, you can see truly how "normal" she is. www.facebook.com/delaneyskyeottdahl

I hope that helps... Congratulations and if you need any advice, I am always here for you...

A bit different, have adopted 3 with DS. Now all adults both DD's went through mainstream school and obtained GCSE's (not A*)

Yes as DelaneysMom says there are some difficulties but not that more difficult than my NT homegrowns just different.
Our 3 haven't stopped us doing anything they have travelled the world and really enjoy life.

At present they are buying gifts with their own money to fill shoe boxes for children for Christmas.

Congratulations and enjoy.