Please share experiences of bringing up a child with Downs Syndrome

[FlossieF]

Having suffered three miscarriages, I'm pregnant with what I hope will be my first child, and I've just had my 20 week scan.

Unfortunately the scan showed that the baby has bilateral talipes, and further detailed scan revealed certain markers for chromosomal abnormalities, which means that the risk of the baby having a chromosomal abnormality is 1 in 10.

I didn't pay to have a nuchal scan or take the triple test, because we'd decided that we couldn't contemplating aborting a baby just because it has Downs, and having had three miscarriages I didn't want to be put in the position of having to make a decision whether or not to have an invasive test if the odds were "bad". But after all that, I've ended up in that position anyway, and have decided to go ahead with the amnio.

My main reason for having the amnio is (hopefully) to rule out the "incompatible with life" defects - I can't face going ahead with the pregnancy knowing that will be the eventual outcome, and I still do not believe I could bring myself to terminate the pregnancy if the Downs result is positive.

The point of the post - yes I'm getting there eventually - is to hear some first hand experiences in bringing up a child with Downs. Hopefully these will reassure me that it is not the end of the world, and it is something I will be able to cope with.

At the moment, tbh, it does feel like the end of the world. I've been wondering how I'll cope with my demanding job and a "normal" child. Is it possible to maintain a career and bring up a child with DS? Apologies for my ignorance, but I know no-one who has had to face this situation.

So many people on the ante-natal threads I've read over the course of my four pregnancies to date have the nuchal scan, presumably because they know they would abort a baby with DS, it makes me feel odd and/or deluded for not contemplating that. Hopefully here I'll hear from some people who have a different view.

Slightlycrumpled - that is a good point that your view on all disabilities has changed. Mine has too. I see the world very differently now and it is a much nicer view.

Hi Floss

Having a lull at work so sneaked back on.

Not sure if you've come across this yet but if not have a read of this.
It's SO true:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I have never seen that before TC and it has made me cry, in a good way!

Flossie I hope you are ok.

i'VE SEEN IT A MILLION TIMES AND IT STILL MADE ME HAVE A LITTLE MOMENT JUST NOW AS i READ IT AGAIN! bUT IN A GOOD WAY TOO [SMILE]

aggghhh, so sorry about the caps!

that holland thing is fab,and always makes me fill up

So many lovely posts, yet I've managed not to start sobbing. I'm feeling so much more philosophical about it all now, thanks to all of you. A trip to Holland doesn't sound so bad, and the stories on the links you've posted are inspirational. Em - the pictures of your little girls on your web-site are gorgeous - Isla looks so cool with her pink car! I'll make sure dp reads your husband's story, and the article from the chap in the Times, even before we get the results.

I've just returned from the hospital, so the amnio is now done. Taking it easy and keeping everything crossed that he hangs on in there. Ironically, now that I've had it done, the results of the test seem less important.

I'm glad your home Flossie, put your feet up and make sure you stay relaxed. I hope you are not kept waiting too long for the results now to enable you to enjoy your pregnancy.

Thanks - I should have the initial results on Tuesday - will let you all know.

Feelingbitbetter - meant to say really sorry to hear about your current traumas - hope the treatment does the trick, and that your little fighter pulls through the latest setback as he has done before.

Feelingbitbetter-Good Luck to you and your beautiful son.My darling boy is 20 and he listening to Cat Stevens and singing along,as I write this.
My son didn`t smile until he was 4 months and it was beautiful when he did,a sort of exhausted sigh,which I have never forgotten.
In fact I have found caring for my son easier and easier as he has got older,unlike what thoughtless people warned me.Practice makes perfect!

Hi Flossie

I don't have any children with DS but I do have three boys and the eldest has Asperger's Syndrome. This is something that does not show up in a scan, in fact doesn't really show up for a few years. He is an absolute joy, incredibly sweet despite nearly being a teenager and apart from the difficulties he faces (which I would take away in a heartbeat if I could) I would not change him. His sweetness and innocence is intoxicating, he is brutally honest and so you know exactly where you stand and that he is sincere .

It's been emotionally hard, I have struggled to come to terms with it, and occasionally get upset when people look at him oddly (he doesn't 'look'like has has special needs), but he is an absolute darling and has progressed way beyond what we thought he'd be able to.

What I'm trying to say is that not all difficulties/condition are obvious at scan or CVS Amnio etc and some children are unlucky enough to develop SN as a result of illness or injury later. We love them no matter what, and I mean REALLY love them with all our hearts. The minute you fall pregnant you worry, and it never stops. There's nothing like being a parent, truly.

Try to enjoy your pregnancy if you can, you will love your baby no matter what and he/she will bring you so much joy.

Take care!

This is such a lovely thread. Two things struck me - the loving the sn child just a little bit more. I think of it as a deeper experience of motherhood. And how having a sn child makes life more interesting.
I have changed so much since having our third child with ASD. I've been stretched and seen both the strengths I have and the weaknesses.
Flossie -you sound like you will make a fab mum. Take care.

hi there hun
wow where to start firstly big congrats to you
i have a baby boy who is 5mths old now
i was told at nearly 24 weeks we had a problem and had the choice to abort now for me and my dh this was never going to be a choice he was our child with or without special needs
this is IMO only
he has heart disease and needs it operating on
has craniosynostosis premature fusing of the skull bones if he doesnt have the op before a certain age he will die
has a cleft palate
has one kidney
and as had a 4 hour op at 11 weeks old
only 50% muscle control of his neck hence he flops everywhere
has a curved spine and will not sit or walk etc....
ok we knew this and boy did i love samuel from that day we were told
i feel sorry for him and sometimes very guilty i made the choice not to abort and to ive him the chance of life
he is such a special different little boy with a georgeous smile and i woudnt want him any other way as he is samuel with SN not just a SN child
in other words i see the child not the disability
i understand your dilemma i really do and feel for you
ive been told by MNetters that special mummies get these special children as we can love them and are the best mummies for the job so to speak
you ask about working and raising a child with ds
i cant work my son needs me all the time and tbh i cant leave him i dont want to
we are about to start a special nursery so he can have access to things he needs and maybe just maybe i might leave him fora while for some me time
but tbh i doubt it
im fiercelly protective of samuel as well
eg when shopping mums will look at him in his special seat and you can clearly see hes different with his big eyes and tongue always out they dont know what to say but i do
i say smile samuel say hello and he smiles and they do ice broken
this is your child ............be proud and be happy........you can only do what you are capable of and onloy you know how much you can cope with
theres lots of networks of support out there only there for special children but they are children first and foremost
if you needs to chat please feel free
to e-mail me at [email protected]
take care hun x

Hi Flossie

Congratulations on your pregnancy

No direct experience of parenting a child with DS, although one of my best friend's has a ds with DS and he is absolutely gorgeous with a massive heart and a HUGE sense of humour. We all love him to bits.

I just thought that I'd pass on my experiences regarding your query about working with a child with SN. My dd has cerebral palsy and PMLD (profound and multiple learning disabilities) so is massivley impacted by her disabilities. I went back to work for 2 days a week when she turned one, and then back into F/T work when she was 20 months old. It can be done if that's what you want . DD has been to mainstream nursery when she was small (they were fab with her), and since I went back to work she's had a nanny. I know that sounds incredibly posh , but for me going back to work was a really important step for me, and so if childcare payments took a massive chunk out of my salary so be it. We've been lucky enough to have two ladies looking after dd during the week for the past 3 years now, and my dd is very much part of their families just as they are part of ours . DD is a very happy wee girl, and I've managed to keep my sanity, so all good.

Hi Flossie,

Firstly - I know EXACTLY what you are going through as we had the same thing happen to us, but at the 12 week scan (they picked up a very large nuchal fold and from then on it was doom and gloom...).
Thankfully, my husband and I were of the same mindset - that we would not terminate the pregnancy regardless of any abnormality - but family & friends were not thinking along the same lines and I, like you, was in turmoil about how life would pan out.

I refused any invasive tests on the grounds of possibly miscarrying a much wanted baby, but we were offered fortnightly scans for me to build up a profile of the baby. It became clearer and clearer at each scan that baby probably had Down's Syndrome (rather than any other abnormality), but we still didn't have a definite answer. It was agony some days wondering what the future held and yet at other times I was perfectly calm. Our soft markers included small nasal bone, short limbs & fingers...

We decided to have an amnio at 36 weeks, when I knew that if baby was born that he'd be a good size and have a good chance of survival. Our reason being that I would feel calmer going into labour just knowing what I was going to face and also for friends and family to get used to the idea of our son having Down's Syndrome, should that be the case.

Anyway, as I type, I am cuddling the most beautiful, smiley little 4 month old who (as 'thomcat is for life' says) 'happens' to have Down's Syndrome. He is adored by us, our families and most of all, his big sister. I looked at him in the hospital the night that he was born and couldn't believe that I had been asked on numerous occasions if I would like a termination (rather than the more helpful suggestion of putting me in touch with the local DS support group!).

Would any of us, having met our child, decide that we don't want them as they might be hard work and bury them at the bottom of the garden???? That is what it feels like to have it suggested that my son's life isn't worth having.

He inevitably will have some learning difficulties and health issues as he grows up, but believe me there are thousands of children out there who do! I'm a Primary school teacher so see plenty of problems that parents didn't expect when they were handed their 'perfect' child.

Please don't feel that having DS means that you have to give up your life! I'm intending to go back to work part-time (as I did after having DD1) and know that most of the mums in the support group work to some extent. If anything, this year has made me a stronger person who feels fiercely defensive of my son's existence and I wouldn't change him for the world. I have met wonderful families and feel incredibly blessed to have my children. Don't live a life of regrets, but embrace the child you've been given and enjoy him (and your pregnancy). Once I accepted that my baby had DS, my pregnancy felt easier to deal with.

It's not an easy time and I can't pretend everything felt or feels rosy all if the time. Myself and others on here with children with DS would always be on hand to offer support and I send my heartfelt best wishes to you. Ultimately, you must do what you feel is right for you and your partner and remember that nobody should ever judge you for the decisions you make. Sleep well tonight - I remember the day of the results being very stressful, but as I say, I look down in my arms and know that we made the right decision for us.

Big hugs to you
x

Thank you again everyone for all the lovely messages. The hospital called and the initial results of the amnio are normal so far - this means that the three most common trisomies including Down's have been ruled out. They are culturing the cells for another 2 weeks to look for other abnormalities, and there are still some other test results to come in, but so far all well.

Also no signs of any adverse consequences following the amnio, but still keeping everything crossed that I won't come to regret that decision.

Now I feel like a bit of a fraud for having bothered you all, but I'm sure you will all understand that this is a huge relief. I think a significant part of that is just relief of knowing one way or the other rather than the relief of not needing to face having a child with DS. Your positive comments had helped so much in making me see that, whilst it would bring extra difficulties, it wouldn't be the end of the world. The last few days would have been so much harder to deal with if you hadn't responded.

Of course, all we know is that the baby doesn't have Down's, Patau's or the other one. As a few of you have quite rightly pointed out, there are so many other possible problems, but one can't worry about everything (although I'm sure I'll have a jolly good try). Hearing about some of the problems you and your LOs had or have is truly humbling, and the fact that despite it all, you are willing to spend time supporting someone who is worried because there might be a problem will give me strength in dealing with the talipes (which, comparatively speaking, is relatively inconsequential) and any other problems that he may have.

Good luck to all of you - especially to those of you (Feelingbitbetter, Disneystar, Bongoboy, Kizzyboo etc)dealing with medical complications at the moment and/or in the early stages of adjusting to life with a child with special needs. I'd like to say more to each of you individually, but I need to go to bed now.

Goodnight.

Was thinking of you today. Glad things seem to be ok so far. Whilst no one here regrets their children I am sure we are all in agreement when I say that you must feel a huge sense of relief. Facing the prospect of having a child with any kind of SN or disability is daunting. I know you still have more tests/results but please be assured that whatever the results, your baby will bring you more joy than you realise, (along with the sleepless nights and stretchmarks!!) Best wishes to you and dh. x

What a wonderful thread I've really enjoyed reading it. I have 3 children and my second daughter happens to have down's syndrome. She nearly died when she was 4 months old after contracting an infection following heart surgery. My dh and I were with her when she stopped breathing and that experience taught us both that the most important thing in life is your health, without it you have nothing. She inspired both my husband and myself to start businesses and we have her to thank for giving us the "push" we needed to take the plunge! She is now a healthy 9 year old, attends main stream school and is loved by all. I won't pretend that it has all been easy...she was fed via a nasel tube for a year and a half and toilet training was a nightmare and I've had to fight to get her all the support she needs at school but I wouldn't swap her for the world. She wouldn't be Olivia if she didn't have downs and I don't think my other children would be so patient and caring if they didn't have such a wonderful sister.

If you want to see some photos my lovely daughter please click here

Morning Flossie,

Really pleased to hear the results are looking pretty positive so far - you must be exhausted. Glad we could be of support and hopefully that will remain the case as and when you need it.

Hey - Gingemum,

I've seen your website before and think it's great. Will no doubt be ordering in the future. As a teacher who has spent the past 5 years trying to push for 'phonics' teaching in our school I was somewhat amused to learn that children with Down's Syndrome are more visual learners who benefit from sight vocabulary 'flashcard' style learning and that I'll have to use a different approach for my DS son ;)

Flossie, only just caught up with this, but wanted to say I'm glad the results are all okay so far.

Like you say you can't live your life worrying about every potential problem,particularly when your a parent, SN or not, you would quickly be very grey.

I really hope you can relax and enjoy what is obviously a much wanted pregnancy and baby.

Flossie,
Great news so far, I hope it continues to be and helps you to relax through your pregnancy. Please keep us updated - especially that all important birth announcement! Good luck xx