New grandson diagnosed with Downs Syndrome

[harassedandherbug]

My little dgs was born on Sunday and confirmed Downs on Wednesday. He doesn't look as if he has Downs, at least not to us, so it was a bit of a shock. Luckily, apart from some initial feeding issues, he doesn't have any other health issues.

My ds & dil are lovely, but have always needed quite a lot of support before the baby so I'm anticipating that this will continue.

Really, can anyone throw any light on what we can expect? What can I do that will make things easier for them and him?

Thank you.

Just love him:):) He is a baby like any other:) He will probably be floppier than usual (hypotonia is the name for that) and slower to meet milestones but he will grow and develop in his own sweet time.

There may be an overwhelming flurry of professionals at first, which can be hard to cope with on top of the shock of his diagnosis.. but his Mum and Dad don't have to have them all around..and they should chose how and when to let the well meaning but sometimes too-keen-to-get-involved people come around.

I'm sure your DS and DIL will be grieving for the child they thought they were having and the mental future they had planned that somehow seems to have vanished..it is very hard at first when your child isn't how you imagined.. but it does pass and your support will help immensely. (My son has different disabilities but the realisation when he was born that he was going to be different was pretty shell shocking to be honest..).

Congratulations on your grandson.. I know it sounds corny but he will bring you all GREAT joy!

Thank you, that's such a lovely post. He's such a gorgeous tiny boy....just want to squish him!

What I've found particularly hard personally is guilt. I'm 41 and have a 6mth old ds (my dc's are 23, 21, 6 & 6mths). My dil on the other hand is only 20. It seems unfair, but then I remember its not about me.

I'm not sure what the next step is, so much stuff for them to go through!

Congratulations! I have a son with downs. Whe he was born and it was confirmed I was in total shock and did a lot of crying. For us there wasn't much more medical intervention, we saw a paed at about 8 weeks and then some physio. All I can rally advise is to let them get on with it, talk about it if'they want to - don't force them to talk about it, offer help that you would have offered anyway.

If your dil is on Facebook there is a group called Future of Downs she will get lots of good advice and support there.

My son is the light of my life now, I love him to bits (as does everyone).

If you have any specific questions please ask.

Congratulations on the birth of your Grandson.
It's really good news that he doesn't seem to have the health problems that some babies with Downs can often be prone to.
No personal experience i'm afraid, but have you been onto the DS association website? There's some good advice for family members on there. There's a local support group in our area (Leicestershire), so it maybe worth an internet search to see if there's any support groups close to your family.
Best wishes to all of you.

congrats on becoming a grandparent! i'll be joining that club by the end of the year too, can't wait, all the snuggly good bits, some of the smelly wet bits, but no leaking boobs or stitches to get over

seriously though, love him for being him and a latest chapter in your family - yes, your DS and DIL may have some different things to hurdle than they anticipated, but essentially they need love and support more than anything, this (IMO) is the one role you can fill like no other.

listen to HCPs, offer to go to appts to be an extra pair of ears/eyes but don't expect them to take your offer iyswim?

and please, ask them how they'd like you to help, a new baby is a lot of work

but most of all, enjoy him

Congratulations!!!

I can only add, I know how hard it is to parent over those many years. I have a DStD 28, a DD age 17, a DD age 6 and a DS age 5.

It must have been a shock, she probably got a low score on her bloods because of her age.

I can just tell you, I know an awesome young lady who is 22. She has a smile or a hug for every one she knows and a smile for those she doesn't.

She is a leged around here and adored by all who know her.

She always has something to talk about and something to do.

Oh, BTW, she has downs syndrome! When her and my DD had a bit of a falling out when she was 13 and my DD was 8 I exaplined that to my DD. She asked 'She has downs syndrome, does that mean I have ups syndrome?'

I thinks that is an accurate statement and one that could help. Your DGS is fine and we all have 'Ups syndrome'!!!

Enjoy the love!!!

leged legend

Be aware that there are different levels of DS, my cousin is articulate, going to college courses and is a bugger at cheating at cards. My Aunt is very involved in DS Ireland, good local support groups will help and happy squidging.

Thank you so much for all your kind words, its very encouraging.

Dgs does have problems with his blood clotting and has to go back to hospital on Monday. Neither of them drive so its down to me to take them. Unfortunately our local hospital is tiny and basically a glorified old people's home, so we have to go 20miles away. Is there any way they could get help with the cost? They're constantly broke and I'm on maternity leave, and tbh honest the last week of going backwards and forwards left us (dh and I, he's not ds's father either) broke and me in tears and exhausted having to deal with my youngest two too.

I'll do it regardless, I have to, but I just wonder if there's some help available.

Congratulations on the birth of your DGS.

Re:hospital costs:-
Officially www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Illorinjured/DG_10018959

Unofficially - may be worth checking with volunteer coordinator at the hospital if there is any sort of scheme for helping people out with lifts to/from hospital.

Hi Harassed Congratulations for the grandma and to wet DGS head.

I would just be there for them, treat your grandson as you would any other child. A tip though, when the baby protrudes his tongue tap it and it automatically withdraws. Then add speech, ie tongue away whilst tapping, eventually you will just need to say it. Another tip from me would be to not get tied up in all the glossy stories about how life is rosy, you don't know the future and how this will be until you are travelling the road. Take each day and each step at a time. There will be many junctions and hills along the way.

My DS also has down syndrome, found out after birth after they found his heart condition. He is now 11yo.

You could try the DSA website, who will also put you in touch with local contact and email forums. Facebook groups didn't work for me. Anything else you want to know just ask.

Give my regards to mum and dad and DGS a big hug from me x

dev- how early should the OP's ds/dil look into claiming DLA/Carers etc for the baby, as that will help with extra costs.

here are the guidelines to claiming. I would say defo apply as soon as possible, a lot of babies who have DS and no medical issues seem to be turned down, if you want any advice I can help as much as possible. My DS got DLA from 3 months, however there is medical issues attached. I would appeal all the way though. Babies with DS are different to babies as there is a DS protocol to follow for a start, more hospital appointments even if there is not many medical issues plus feeding is normally an issue. Then there's portage, physio, OT etc Carers allowance is only awarded if your child receives DLA. HTH x

here is the new parents section.

this is the families section.

well worth a click around and reading as much as you can, however all the reading and discussions that I had has NOT prepared me for my DS future, hence why I say keep an open mind, go with the flow, cherish each day and don't get caught up in others positive experiences.

Congratulations Grandma (Nanny, Nanna Granny)
Please tell you DD and SIL that are far worse things than Down Syndrome. I speak as an adoptive parent parent of 4 with DS (sadly 1 died with horrendous health problems) They are now 23, 27, and 32 and are so kind and thoughtful they put £1 /week in a pot for the homeless not a lot but they re numerically poor! We brought up the same as our homegrown lot not to hurt peoples feelings etc.
Tell them to enjoy their son I promise they will enjoy him.
BTW My DD2's birth mum was only 15 and dad 16.
As a little extra I helped deliver my first adopted son, unbelievable.
My best wishes to you all and ENJOY and please Grandma don't feel guilty and enjoy your own LO, your DD is lucky to have your support.
XX to you all.

Congratulations. My friends went through this. What they found most helpful in the first few days was everyone being positive and cooing over the baby just the same.

There are charities e.g. family fund that can help with costs.

Congratulations

I have a six year old son with DS. He goes to mainstream school and is doing really well there. Yes he's behind most of the kids in his class, but not all. Most importantly he seems happy and has lots of friends. We found the NHS dealt well with his medical issues, and there were many when he was much younger, but they didn't deal well with other support. We subsequently set up a local support group for families with DS. www.eldssg.co.uk.

The Down's Syndrome Association offer some good courses. The residential course for new families is really good. They also offer speech and language courses run by a company called Symbol - they are fantastic.

Most important in my view is good speech and language support.

Makaton www.makaton.org/ signing is brilliant and it's never too early to start signing - all of you. It will help develop speech - it WON'T replace it. MY son speaks fairly well but we still use Makaton, often as a back up but sometimes where you don't want to speak - in the cinema for example.

Most importantly he's a boy, your grandson, first. That's what will define him. He'll be more like you and your family than other kids with DS. Down's Syndrome is something he happens to have - it is not what will define him.

Congratulations! A lovely new grandson is the main issue, and any issues arising from a bit of extra chromosome can be dealt with as they come.

One place, someone told me good things about.

Hi congratulations on your grandson!! Although I do not have child with DSyndrome I work with a wonderful lad who happens to have downs syndrome. He is a pleasure to work with, yes he has his problems but he never stops amazing me! Enjoy your Grandson!!