Child with Down Syndrome

[BuckleberryFerry9]

Hi, had results back from 12 week scan, our baby has a 1/4 chance of having Downs Syndrome. Are there any parents out there who can tell me what facilities are out there which we would be entitled to, speech therapy, physio therapy, etc., and what has to be paid privately? Might sound mercenary, but we are not a well of family, we just about make ends meet, and we need to be prepared financially. There is only so much internet tells you. Thanks

Here's a helpful link from downs-syndrome.org.uk

www.downs-syndrome.org.uk/for-families-and-carers/benefits-and-financial-help/commonly-claimed-benefits/

Child Benefit – can be claimed by all families, reduced for families on higher incomes

Child Tax Credit or Universal Credit – claimed by families on lower incomes. Which one you claim depends on where you live.

Disability Living Allowance (DLA) – a non means-tested benefit for children with a disability or illness. It is intended to compensate for the extra costs of having a disability. This is the main “extra” benefit for children with Down’s syndrome. You can spend DLA in any way that benefits your child

Carer’s Allowance – paid to people who are not working because they care for someone who gets DLA

As it stands at the moment When your little one is born and as they develop assessments will be done as to what support/therapy etc is required and referrals for support will be made via the nhs

The benefits are as mentioned above, although if you earn over £123 per week you can't get carers and some aspects of DLA may not be paid until your little one is older as the assessment is based on comparison to a 'typical' child of that age.

My youngest DS doesn't have downs but he does have 2 different chromosome disorders ( plus a lot more going on ) , he was entitled to high rate DLA care component from 3 months old ( that's the earliest you can get it ) I was entitled to carers allowance.
If you are on a lower income you can get tax credits disability element .
You might be entitled to working tax credits.
We don't get tax credits but I know a lot of the families at his school do and they discuss it on the school private fb page.
From age 3 you can claim the DLA mobility component for a child with downs , even if they have no physical disabilities.
They use the horrible term "mental impairment" to mean a child would be a danger to themselves or others.
If you get the high rate mobility you will get a blue badge and pay no road tax.
All of the DC I know from school with downs do get mobility.
As a child with downs DC should be put on an early intervention pathway for speech and language , physio and OT.
Basically from birth and a team called portage sort that out.
If the disability midwife doesn't do a referral before discharge your health visitor can.
You certainly will be entitled to lots of help.
Don't fill in those DLA forms yourself but get an advocate from your local Downs charity / support group to help.
Congratulations on your pregnancy @BuckleberryFerry9 if you need any help or a hand hold I'd be happy to keep in touch

Thank you ever so much for your posts, advice and offers of help. Much much appreciated x

Hi
I joined MN to answer your post, I’m a long time reader.
The first thing I wanted to say to you is try not to worry too much but I know that’s not easy.
My child has Mosaic Down Syndrome, it wasn’t detected during pregnancy and I was only 28, no Down Syndrome on either side of the family.
The midwife noticed as soon as he was born and told me that she suspected DS, he was well at birth but had a low score which improved after 10 minutes, he was tiny and had trouble keeping his temperature up so spent 2 days in the hot cot. I was told he would have trouble latching to the breast so was told to express and feed by syringe. Day 2 he was screaming and starving so I put him to my breast and he fed immediately with no issues.
The next week went past in a blur. Blood texts confirmed he had DS, his heart was checked and all was ok.
The support I received was second to none during the first year of his life. We went to a therapy playgroup where we had access to speech therapy, OT and and all sorts of help, the support there was incredible, also there is much to be said for meeting other parents in the same situation, I have made lifelong friends. All of this was free and there was no need to pay for any extra therapy.
He was an amazing baby, happy, rarely cried and an absolute joy.he met his milestones a little later and walked the day before his second birthday.
His health has been mostly the same as other children, lots of the usual stuff but colds sometimes turned to chest infections that needed a couple of nights stay in hospital as a precaution. He had glue ear which affected his hearing so now has permanent grommets fitted, glue ear and infections are a thing of the past and his hearing is spot on as is his eyesight.
He went to a special needs school at the age of 5, I didn’t even consider mainstream as it wouldn’t have been able to meet his needs. He stayed there until year 6 when he moved to another school that can meet more severe needs. There were 3 other DS children in his class at primary who came on leaps and bounds, all talking, all learning well. My child wasn’t doing so well, he’s still non verbal and showed signs of autism so is likely to be diagnosed very soon, I had to push for this.
Unfortunately some children can have both Down Syndrome and autism.
He has few behavioural problems and is the typical stereotype of a DS child, very loving and affectionate, a comedian and bundles of fun.
He receives higher rate DLA and mobility despite no physical issues.
I receive Carers allowance, we were awarded this when he turned 3.
I just wanted to share my experience and try to tell you that it isn’t the worst thing that could happen. If your child is born with Down Syndrome you will love them with a ferocity that you didn’t know existed, I have other children who I obviously love very much but this is a deeper protective love.
If you would like to chat anytime please message me.
Wishing you the best of health for the rest of your pregnancy.

Ellathechristmasfairy just wanted to say you sound like a wonderful mum and your son is lucky to have you.

Good luck with whatever you decide OP x

Thank you Ellathechristmasfairy, beyond words, I’m glad you replied.

@ BananaBooBoo
Thanks 😊 we have our moments but he is such a joy, especially at this time of year.
@BuckleberryFerry9
You’re more than welcome!

Just wondered if anyone has successfully breastfed a newborn with Down’s syndrome? Any advice on how to keep them awake during feeding would be much appreciated

No advice but congratulations on your baby.

Congratulations buckleberry! Newborns are often super sleepy and it’s a struggle to keep them awake to feed. My dc has cerebral palsy not DS but we had good success using a supplementer with expressed milk while feeding. If you have had a check-in with your feeding SLT or specialist midwife/ health visitor, they may be able to put you in touch with a breastfeeding counsellor who can advise. The supplementer just makes it easier (less work to suck).
But congratulations again! How lovely you came back to the thread!

Congratulations OP, hope all is going well. When I was pregnant I used to read a lot of pregnancy/baby books by Dr Sears, he is a paediatric with 8 children, one of whom has DS and he touched on issues throughout the book. His wife BF for 2 years IIRC and used a supplementer as and when required.