All parents of children with Down's Syndrome please help us!!!!!!

[cupcake78]

What are the realities of parenting a child with Downs Syndrome????

Today has been a living nightmare!! Our baby has two abnomalities one is very minor and really doesn't worry me but the thickness of the Nuchal fold is very significant and this in conjuction with the other minor problem all strongly point to Downs Syndrome.

We have been offered a Amniocentisis and initially said not till after the risk of miscarriage (as I have already had two m/c's in the last 18 months) had passed but we have now decided that we need to know the facts before considering our options.

Because I am 21 weeks + IF we do decide to terminate (really not sure) then we only have two weeks to decide and the test results take over a week to come back.

I can't sleep, eat or drink and I am sick I have lost over a stone in two days and can't see an end to this.

We have nobody to talk to about this and just need to know how much of an impact does it have on your life? and what is the good and bad points. Please be honest with us.

This is the hardest thing I have every had to do.

stay calm think through your options, obviously you want this baby as otherwise you wouldnt have left the amnio till after risk mc falls!
my mil friend has little girl with downs they have a great support network and she goes normall school she is hard work but sooo rewarding.
can your gp give you no for suport group, group parents with downs children?
good luck and make sure you decide to do what is right for you!

there are lots of threads about down syndrome nuchal folds etc - if you search in the pregnancy topic there are a lot. Our story is there. If you do a search for my name and down syndrome you should get a lot.

My dd1 is almost 5 - she has down syndrome as well as a heart defect. The heart defect was corrected with surgery when she was 8 weeks old and to look at her you would not know unless you saw the scar.

We live in Australia although were in the Uk when dd1 was born and up until she was almost 2.

We knew before she was born that she would have down syndrome and the heart defect - it was detected at the 20 week scan and with subsequent scans.

She attends a mainstream kindergarten, as well as a sn kindy. Her week also contains some therapy sessions as well as swimming lessons. Putting her medical needs aside when she was born - she was much easier to care for than dd2 and dd3.

I do not want to say too much - will try and link you to some articles and threads.

Also - we found contacting the Down syndrome association very helpful - they would have prenatal information ( as our organisation here in Aus does) They provided us with lots of info etc.

Feel free to contact me if there is anything specific you want to ask.

Try these links:

article by father

other parents' stories

\link{http://www.downs-syndrome.org.uk/UK organisation}

our aus organisation

mumsnet thread

article about the 1st year of dd1's life

what it is like having a child with down syndrome

as I said if you search for my nickname and the words down syndrome there are lots of threads...

hth.

I have to rush now as my dd has just woken from her nap but you are welcome to email me [email protected] if you want to chat at all. I will however try to get on here later to reply here

My dd can be seen www.constanzesmith.com - she is 2yrs 4.5mths old and has Down syndrome

Sharon x

UK organisation

hopefully that fixed that link.

Hi cupcake - I think the best thing you could read is the article by Simon Barnes. Edisvold has already linked you to it, it's her first link - article by a father.

I read that and absolutley everything he said was spot on. I'd read a line and look up at DP and read it to him, even though he'd already read it, and say 'oh my God, that's it exactly isn't it'.

My daughter is 5 and a half now. She has Down's syndrome. We didn't know before and it took a bit of getting used to, about a day of tears and then we fell in love with hr, deeply and it's grown and grown and grown.

What are the realities. Well she's delayed. She does everything everyone else does, it just took her longer to get there ad she might not do it as well. But she does it. And what she lacks in her skills at reading and writing, she makes up for her in her charm, her wit, her cheek, her social skills.

I have to say it doesn't really have any impact on my day to day life. She attends mainstream school where she is the most popular girl in her class. She's pretty bloody popular throughout the entire school tbh. She's the only kid in reception that has year 6 pupils walk past and have them shout out 'Hi Lottie'. At the school fair on Saturday she was like the Pied Piper!

Bad points - umm she can be hard to discipline. But she has her mothers nature as well as Down's syndrome! With development delay comes some behaviour problems. She as no sense of danger, she doesn't fear strangers, roads etc. She has some irrational fears and you can't talk hr round sometimes. She doesn't really conform to structure within the classroom so needs 1-2-1 supervision.

Nothing huge, nothing that we can't deal with, or the school can't handle and nothing that a NT kid doesn't do now and then.

I was with a few mums and their sons after school and they had to discipline their sons a lot more than I had to with Lotie. They were stealing chocolate, fighting, shouting etc. Lottie jus got up from the table when she had finished and wouldn't sit and wait for the others to finish!

What are the good points!
Ha haaaaa, where do I start. She's my daughter. My baby girl, my first born. She's the centre of my life. I see her as having 1 extra chromosome, an extra one, not one missing! She's the sun. I love her unconditionally. She makes me proud every day. She's made me realise that we shouldn't take things for granted. She's made me appreciate the things I used to take for granted. She makes me and everyone around her laugh and laugh. She lighs up a room. She draws people in and gets them to stay. Through her she's bought some great people into my life. She brings out the best in people.

She makes the world a better place. We need more people like Lottie.

Anyway, ask away, I'm happy to chat. And if you want to call me or go as far as meeting, it would be my pleasure.

I look forward to 'talking' with you more.

Please, please try and not feel sick with worry. I know it's easy to say but it's not helping you at all. You need a clear head and to keep as calm as you can. We're here to help in any small way. Keep posting, xxx

That's a great post TC as ever.

Lottie sounds so fab. My niece has DS and I would echo TC and Eidsvold's posts. She goes to mainstream school, walks, talks, reads, plays.

Yes she achieves milestones later than other children. She is quite quiet and reserved but TBH I just think that's her nature anyway.

She walked at 20 mo, potty trained at 3-4 yrs I think. Has grommets to deal with hearin gissues but otherwise no health problems.

I think she is at the less severely affected ned of the spectrum, without doubt. Children either have DS or not, but the degree of affect will vary hugely, which I didn't realise. But she is a joy.

cupcake you need to read all you can and get all the advice you can, but if you choose to terminate you will get plenty of supprt on MN. Look at threads by Rosy and myfairlady in the archives.

Hi Clery, yes you see Lottie is so not quiet or reserved. Far from it!

Cupcakes - I took Lottie to a birthday party at one of these activity places on Sunday. Last time I took her to one she clung to me, terriefied. Not so on Sunday. As she walked through the doors, shouting "party, party, come on mummy, hurry' she steamed straight in and threw herself straight in to it and didn't wait for me to get her shoes off! For a little girl tht only started to walk properly at the end of last year she was up on the very top level and 'helpfully' (?!?!) pushing people down the slide. With each push she'd do her happy hands, with this massive grin on her face. At one point I couldn't find her and then she was discovered at the food table of another party happily sharign a bowl of cucumber with a little boy who had his face an inch from her. The parents told me she could stay! I didn't let her!

The other children don't know she has Down's syndrome but from day 1, literally, she had what the tachers refer to as her hareem and they protect her, want to be near her, they support her, they adore her, without knowing why.

It makes the parents of thee children feel good in some way and they encourage that and we are inundated with invitaions to tea and to parties.

When Charloote started to walk it was those kid in her class that kept her walking, to the point that she would ask for applause before she walked anywhere!

One little boy woud wait for her every day at the door and shout 'walk to me Lottie, walk to me' and pat his knees and hod out his arms for her.

I could go on, but you get my point.

It's hard sometimes but most of the time it's bloody great having a child with special needs.

I feel tired but I feel blessed.

I just said to Dp 'what's the hardest thing about having a DD with Down's syndrome', he replied 'I don't know', I said 'ok, what's the best thing about having a child with DS' to which he replied 'I don't know. It's not about having a child with Down's syndrome is it, it's about having Charlotte. We have Charloote and she's wonderful and aggravating in her own sweet way'. ! He didn't know why I was asking he's watching TV, that was just a natural honest respomse from him. Think he sums it all up pretty well

jeez thomcat are you a model?

Thank you all so much. We have had tests yesterday and results come back tomorrow.

I obviously hope that everything comes back ok, but I am also aware that had we not had to make the decision and it just happened then we would just get on with it and be the best parents we could. But we have a choice that very few other people with special needs children get. It is this choice that means any decision we make we will sometimes regret and wonder what if?

Mild DS really really is not my concern. It is the possibility of the seriousness of severe DS that is our bigger issue.

It is very fair to say that I never thought I was ignorant until this happened and I am shocked and stunded that I have concerns or "issues" with it. My friends and family have always commented on how open minded I am and fair etc but now I am begining to wonder. Some of my thoughts over the last few days have appauled me whilst others have suprised me.

I thought if it happened to us then I wouldn't be bothered and wouldn't need to know. I could not have been more wrong!!! If anything is to come out of this at the moment it is that I am already a better person in the last three days. I will never be the same again and DH and I can not turn back from this we can only go forward and understand how much we have changed and grown because of it.

cupcake you sound soo strong and you undoubtedly will be a better person for whatever news today brings
i will be thinking of you all day x

cupcake, only just saw this - I hope you get a clear result today, it must be a terribly stressful time .

I have a 6 year old dd with DS. She is an absolute joy - funny, sweet-natured, helpful and and all-round darling really. She goes to mainstream school and is doing well - she is very happy at school, popular and is learning new things all the time.

Of course it has had an impact on our lives - dd2 has a fair amount of medical appointments - mostly for minor things like hearing & vision etc., but they take up time, and I put time and effort into making sure she gets the best educational & medical provision, I read books and attend conferences & meetings.
She is also a crap sleeper now (after being the easiest baby ever) and that isn't great.
When she was a baby she had a serious heart defect - thankfully it is completely repaired now and her heart is as good as a normal one, but of course it was a terribly stressful time for all of us.
I also can't say that I feel completely ok with her having DS - in a way the pain lessens but it hasn't gone away IYSWIM. Sometimes I feel sad that so many things are harder for her.

She has had such a positive impact on all of us though - her siblings are kind and caring, she has had the same effect on her class at school - the teacher has repeatedly commented how having her in the class has made such an obvious difference to how the children are with each other. We love her so very much and every achievement is celebrated. She is such a gorgeous, beautiful girl and I always feel really proud to be out with her.
There is a picture of her in my profile pics if you want to have a look.

Anyway, I hope today brings good news.

My friend's ds has DS - he is lovely. He appears to be at the more slowly developing end of the spectrum, but is commando crawling, clapping and imitating at 21 months. The most difficult times his mother has had have been connected with another (physical) problem he has which is extremely rare in the general population and still very rare with DS. He's a lovely, lovely little boy, and I was so proud when he was baptised in ds's christening clothes.

I do agree with fio about special schools- ds1 went to mainstream school initially but I have to say our lives became considerably easiier (and his happier) in special school. It was wonderful in ways I hadn't predicted- warm- and also the community that fio describes. People never leave either- our last coffee morning had a mum whos dd was in her 30's Which is just to say that if you ever have a child who does end up in special school for whatever reason you would probably find benefits.

The school does have quite a few children with DS attending (and our school is the one for the most severe cases of everything locally), and they appear on the whole to be able to access a lot of the more exciting activities (such as residential trips) that sometimes the severely autistic or severely physically disabled can't. A large % attend the unit attached to a local mainstream school. In general (and this is very general) from talking to other mothers it would seem that children with DS are often more able to access a lot of mainstream community life, although DS is a spectrum condition so individuals wil vary. The people I know at ds1's school will be the most severely affected by their condition.

oh just to add having seen cat64s post- the children I know at ds1's school (with whatever conditon) are the most severely affected and are the most challenging - with whatever condition. But I have never heard anyone say they wished they'd never had their child. Coffee mornings are a laugh, we joke, and talk about our kids (all our children NT siblings as well). People don't seem that bowed down tbh- frequently frustrated by the system but not by their children

I agree gess - a lot of people seem to have this idea that you feel depressed and downtrodden forevermore when you have a child with SN - my best mates are the mums of children who went to SN nursery with my dd2, their children are far worse off than dd2 but we have a right laugh when we go out. They seem happy with their lives....
Of course it is a shock and horrible to find out your child has SN, but you do pick yourself off the floor, dust yourself off and knuckle down to the business of parenting them, with all the joy and heartache parenting brings anyway.
as a contrast, I know several mums from the mainstream school gates who are right whingers, woe-betide-me types.

and to add to that further the vast majority of children with DS in special school locally go to the other SLD school- which does not really manage challenging behaviours very well (as ds1's school does) so I guess that means that many/majority of children with DS do not have the most hideous challenging behaviours. Certainly they must be better behaved than ds1 (who would have lasted 5 mins in the other SLD school).

true geekgrrl- my school coffee morning group is more upbeat than most of the ms things I attended and even if your child isnt pleasant and sweet tempered you love them as much as your pleasant and sweet tempered ones.

Hope all goes well for you tomorrow cupcakes.

Cat - are there really mothers out there that really regret having their child just because they were born a bit fifferent from the 'norm'? It may well be be hard now and then and some may well wish things were a bit different sometimes but I really don't think anyone would regret having their child.

A mothers love is unconditional isn't it. Just becasue your child is born with special needs doesn't make that any different. In some cases you may actully love them more becasue of those SN's, but not less.
Even in cases where a parent rejects their newborn it's never long lasting, not as far as I know.

There are 15 children with DS in my local support group that meet up and all 15 children vary greatly, as they would if they didn't have DS. The only thing that doesn't vary is the love each mother feels for their own child.

I don't think it would take a 'brave' mother to admit they wished they'd never had their child I think it take a mother who was either still suffering PND or was slightly ill in the head in general!

Oh tomcat, you have me in tears

that was so lovely I have to go and get a tissue lol

geekgrrl , just read your post and will have to get another tissue, that was so lovely

I'm not reading anymore lol lol

and sharonkitten

your DD is gorgeous