Downs syndrome parenting experience

[Tulipandroses]

Hello,

I am currently 14 weeks pregnancy and recently received NIPT results which came back positive for trisomy 21. This has come as a shock for both of us and we’re trying to understand how best to proceed.

I am trying to understand a genuinely balanced view about what bringing up a child with Down’s syndrome involves but almost everything I am reading on the internet focusses solely on the positives. But then you read medical reports that are statistical about the proportion of children and adults with Down syndrome who have certain medical conditions and this doesn’t stack up with the personal accounts I am reading.

I really want to understand the challenges. If I can get my head around how we would cope on the difficult days, then we’ll obviously be fine on the days at the park, on the beach etc etc.

Please help me understand what a difficult day looks like.

Specific questions that would be useful to know are - do parents who have Down’s syndrome children work? Full time or part time? Or do the medical appointments make this difficult? Do childcare places like nurseries take on children with DS? What is looking after a teenager with DS like?

Im sorry if my post comes across ignorant and I hope I haven’t caused offence - I’m doing my best to understand the full picture.

(As an aside, we’re in our late 30s and will have no parental or other support. This pregnancy follows 3 miscarriages).

@Tulipandroses my child has DS. My husband and I both work in professional, busy jobs. I work full time, he works 80%. Our child goes to mainstream nursery and will soon go to the same mainstream school as her sister. They are really close. She has been a very positive addition to our family and has changed us all and taught us a lot, but for the better. I’m incredibly glad she’s in our life.

There are of course challenges. Her first 6-12m were difficult health wise which was very stressful and hard. We’re saving for her life as an adult now as I don’t know what provision there’ll be and what she’ll need. I don’t know if this is necessary and it’s a big privilege to be able to, but it removes a worry.

We had a postnatal diagnosis so didn’t have to make the choice you are. Wishing you all the best whatever you decide.

Would also second the recommendation to look up Positive About Down Syndrome and their facebook groups. The name sounds very happy clappy but actually they’re very pragmatic and actively out to make the lives of people with DS better, it’s not just propaganda.

It’s very easy for us all to work while they’re in primary, harder for secondary unless they’re in special and after that it really starts to get more and more complicated

Hi I’m 25 and my daughter mila was born with trisomy 21 ( I didn’t know until she was born)

luckily mila doesn’t have any other health issues apart from some developmental delays ( she’s 2 tomorrow but is reaching milestones of 12-15 months so not far behind)
and she had under active thyroid

there’s a lot of appointments involved but she’s honestly a joy, it just seems tnet the ‘ baby stage ‘ goes on for a while as she can’t walk yet but she’s starting to
tals her first steps

she is amazing in every way and has changed our life for the better

My best friend's first little one has DS is 20 now. It hasn't been easy, she wasn't able to work and support was patchy at best.

She regrets the lack of supports and her loss of a career she loved. Of course she adores her son but it hasn't been easy. But with family and friends she managed

I hope you are in an area where there are supports .