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).

Whether you can both work depends on the provision in your area tbh.

One friends DC was very unwell as a baby due to her swallow issues and was in and out of hospital a lot.

All 3 DC I knew when my kids were little (early 20s know) ended up at a specialist school where they thrived. All love in supported accommodation as adults.

What a worrying time op. I'm sorry I have no advice but I'm wondering if there are any fb groups that would be able to help?x

Not a parent, but have a niece with Down’s syndrome. As a child she had good health like most children her age. Required some physio as a toddler when she started to walk but was healthy. She attended a main stream nursery and school. The school never worked out for her and she moved onto special school where she thrived: she can read and write and has had a couple of jobs. She’s almost 40 now and has had a problem with her thyroid but on the whole has ok health. her parents split up about 15 years ago. Her mum took the brunt of the childcare as her dad worked away. Difficult to ascertain whether it was the stress of looking after her or whether or not it would have happened anyway. (Her dad had an affair with a work colleague.)

She has honestly been one of the best things that has happened to us. She’s taught us so much about life and love.

good luck with any decisions you make.

Congratulations on your pregnancy OP. I really recommend looking at the books and social media of Sarah Roberts. I think her instagram is something like dontbesorry2 and her book is called For the love of Oscar (If my memory serves me!). She has a little boy called Oscar, her first child, who had a postnatal diagnosis of Down Syndrome. She writes very honestly about the process of adjustment she went through, about the highs and lows of parenting a child with DS. She doesnt sugar coat the hard parts, but she and her three children lead a very full and happy family life.

Can I recommend you contact the charity Positive about Down Syndrome? positiveaboutdownsyndrome.co.uk
They have a Great Expectations group for anyone with antenatal diagnosis to speak to others and will put you in touch with parents who will chat honestly. I don’t have a child with DS but have done some work with them related to an epilepsy charity I volunteer for. I have a friend whose son has DS, we met at Portage (play therapy for children with special needs - my daughter has delays linked to epilepsy). My friend works, her son goes to mainstream primary.
Good luck whatever you decide, I had three miscarriages before my daughter was born and it seemed deeply unfair that she was then so unwell as a baby.

Would you be prepared to meet a local family with a child face to face? I’m not sure if positive about downs charity can sort that out but I know Down’s syndrome association will be able to help you

ive an almost 20y daughter with Downs I didn’t know in advance I was 28 I was so naive I didn’t know women in their 20s had kids with Downs

the association put me in touch with a family and we’ve stayed in touch ever since

I am an Aunty not a parent,
My sister has a very demanding professional role but works 3/4 time and her husband works part time too but they would have chosen to reduce hours anyway with young children. My nephew is the light of our lives and has fortunately been very healthy,.no hospital admissions. I agree with the previous poster would be good to meet families locally to you.

Congratulations on your pregnancy OP! I have a 3yr old son with DS, and it was a postnatal diagnosis. He is in many ways just like any other toddler. He gets grumpy, narky and can be very stubborn. He's also the funniest and most caring little soul. We haven't been without issues - he had some swallowing issues when he was younger and also has some mild hearing impairment. Obviously we also deal with all the developmental delays, both mental and physical.

I don't work, but that's not because of him. He's lucky in that he hasn't had to have many medical appointments or hospital admissions but he does have regular audiology and ophthalmology appointments, plus physio sessions and speech and language therapy. I think therapy provision can be very much a postcode lottery unfortunately.

He does three full days at nursery and absolutely loves it. We're very much hoping to send him to mainstream primary next year. The past few years has definitely not been without challenges and stresses but he is truly a happy little soul and I have great hopes for him. His happiness is paramount to us so that's what we focus on.

Please do PM me with any questions. I will be very honest!

I should add, the main challenge we gave at the moment is his lack of ability to communicate. He's pre verbal at the moment but has quite a lot of Makaton that he used and we generally can figure out what he wants. He actually understands pretty much everything we say to him, he just struggles to reciprocate it back at the moment. But he will get there! You will find that patience is definitely a virtue!!

I'm a family member, not a parent. Apart from the development challenges which parents are better placed to tell you about, I've watched the battles with service providers to get the services they need. Be prepared for form filling and having to demand what your child needs.

A family I know had a daughter with Downs who had a lot of heart issues as a baby and was in and out of hospital then, and there were regular appointments. Both of her parents worked but I think both could work flexibly which they needed to. They were constantly exhausted and spent a lot on specialist support. She also had breathing issues and died as a teenager.

I think the biggest positives in her life were her parents, siblings, family life and her special school which were all fantastic. I think she had a happy life though of course it is unbelievably sad that she died so young.

Not a parent but I used to be a TA in a mainstream school. One boy in the class had DS but, in year 2 at least, coped well. His work was different and he had his own 121 TA but he had friends.

A couple of years later we had his younger brother. Unfortunately the poor boy barely got a look-in with his parents. They were totally focused on the older boy and the constant fight for support for him.

I would think about the impact on current or future DC.

My friend has a child with DS. She is ten now, non verbal and still in nappies. She cannot communicate her needs. She is loving but will need lifelong significant care.

I have a sister with Down’s. She’s awesome and nearly 50. Absolutely no health problems as a child. Needed a bit of physio for low muscle tone. Never been in hospital. Strong as an ox! She was also in mainstream school for primary and secondary but had a 1:1 for secondary. She actually started in a special school which was worse for her, as other kids there had more profound needs and she didn’t get the socialisation, but thrived when moved to mainstream school. She has a couple of jobs, lives in small residential home, very happy. Loves football! Everyone knows her and she feels so loved.

Thank you all so much for sharing your experiences and perspectives, this is so incredibly helpful. I plan to phone the Down’s Syndrome society tomorrow to ask them questions and - good idea - to ask them to put me in contact with someone from our area.

Down’s syndrome - raising awareness and shifting attitudes

is a Facebook page I have followed for years and I would recommend reading for a reflection of a mum’s honest and frank experiences of her DS ‘journey’ from babyhood to now - mid teens. Her son (Seb) appears not to suffer from other health issues the author (mum) works and has two younger children. She doesn’t post often any more, I imagine is pretty busy!

good luck to you.

Hi @Tulipandroses

I've been where you are and I commend you for being able to take such a thoughtful approach. It's really hard finding out this kind of news and my thoughts are with you.

I have a beautiful 7 year old with DS and I'll try to answer your questions honestly but like all parents I am rather biased!! I'm happy for you to DM me if you like.

So I don't work; but that isn't really because of my daughter - I stopped work when her older brother was born because I wanted to. My 7 year old attends a mainstream school, I could easily work school hours. Working full time would be tricky, at her age finding appropriate childcare is tricky - much more so than for babies, toddlers, preschoolers imo. She can go to childcare, but she needs a higher ratio so it's hard to find, more expensive etc.

There are a number of hospital appointments but these are manageable with normal annual leave etc. This does of course depend on the individual child and their medical needs.

Nurseries and childminders definitely do take children with DS. The first 9 - 12 months (mat leave?) are normally full of appointments; the first winter is also hard (colds and bugs) but after than young kids and toddlers with DS are (often) like a younger baby and perfectly easy for nurseries to care for.

I don't have a teenager with DS but I know several - they do not seem to be harder to care for than typical teenagers! The ones I know have teenage moments - grumpiness, stubbornness, questionable hygiene etc - but it's not constant like it is for many teenagers!! I absolutely love seeing teens with DS when we go to local meet ups etc. I always feel so hopeful seeing them chatting away and acting like typical teenagers!

For full disclosure because I know you want to hear 'the bad' these are the trickiest bits of parenting my 7 year old at the moment (there are lots of wonderful bits too, which I'm happy to shout about) but the tough stuff is: she isn't fully toilet trained, she doesn't always sleep through the night, she can't eat or drink a completely normal diet (she does manage to have school lunches), she struggles to communicate as she has minimal speech and she still gets a lot of viruses. Everything in that list is continually improving (just really really slowly).

Congratulations on your pregnancy. I have an 11 year old son with Down Syndrome and happy to answer any questions.
You'll find a lot of positive stuff online, and I think that's because for many of us it's a positive experience.
I work full time and have done since DS was 8 months old. He went to a mainstream nursery which was generally fine and he just stayed longer at each room stage. They were pretty good at being adaptable with him and helped write his EHCP early on.
Having said that I'm only able to work full time as I have an extremely understanding director who allows flexible working and values work-life balance. The first year there were lots of appointments (cardiology-DS had a serious heart condition, paediatrics, audiology, opthalmology, ENT, physio, SALT, Portage). Now we average 1 appointment per month, including school meetings.
DS did main stream school until year 3 and how goes to a truly excellent special school.
Support for children with DS is generally very good and early intervention is key. Provision does differ between regions but as its an easy to recognise diagnosis I haven't really had to fight for support.
I'd say my DS is average for a child with DS, I have a few friends with very capable children and a few who require more significant medical support. I'd say about half of parents (mums!) work and it's really dependent on individual circumstances.
My DS is an absolute joy, plays tennis, swims and loves super heroes. He is very sociable. He hasn't stopped us doing anything. We don't have much family support but do have good support from the local Down's group. I think that's really important.
I'm not sure what the future hold, DS is desperate to be independent, which is great but he'll always need support. We haven't hit teen years/puberty yet, so that may be challenging!
I hope that helps and the rest of your pregnancy goes smoothly.

Not a parent but I'm working with a volunteer with Down syndrome (young adult) he lives independent of his parents with a care team, along with 2 other lads, he has the highest functioning of the 3 but he's naive. He reads well but has comprehension issues despite reading the words. He works 4 hours a week in hospitality but his carer goes too.

This lad had no associated health problems eg heart, whereas one of his housemates did.

He'll always need someone to help him with money and to ensure he isn't taken advantage of, money is something he really can't grasp beyond actually paying. His sister is going to take over once the parents pass away, shes lovely

I work in a special school and over the years we have had a number of kids pass through the years who have downs.

The school is for moderate learning difficulties which in terms of outcomes essentially means the kids there will not leave with GCSEs but entry level accreditations.

Many have some other health problems but nothing too severe - some heart problems are common, and diabetes.

Parents have struggled with things like them finishing school in June in year 11 as they can't just get a "regular" babysitter so they are very much "what are we going to do, can you not keep them longer" etc - they really come to rely on them being in school which is something most parents don't have to worry about by the time their child is 16.

Home to school transport often ends at 16 and the children are not suitable candidates for travel training so the parents have to fight for transport to take them to college safely.

A lot of phone calls to the school (which is full) from parents requesting admissions advice are from parents with kids with downs. I must take a couple a week. So they've all been through the EHCP process and are scrambling for that provision they need which is a bit of a minefield.

All have been lovely kids though and seem happy and well adjusted. I've never observed social emotional mental health (SEMH) problems from any of our downs kids. Most in our school are unlikely to live fully independently though.

All the best.

I have a close friend with a DD with DS

It has been really hard for them as DD probably has autism too, can't get a diagnosis due to backlogs.

Yes she went to mainstream nursery and school but special secondary school.
minimal health problems - hearing, thyroid problems. But biggest problem has been her not being toilet trained until about 13 and then they had Periods to deal with. She often refuses to go out so even holidays can be hard work when she won't go out of a hotel room.

As she's got older she's a lot harder to deal with. She's 14 now but you can't just strap her into a pushchair like a toddler so when she has a strop it's hard.

My friend works 3 days a week and dh works shifts but they only manage because of grandparents helping

My son has a rate genetic syndrome and moderate learning disability so not downs syndrome but similar. He is 9. He loves to help, whether the person actually wants help or not! He has been in hospital a lot, 20+ times, although that has got less often as he has got older. He is in mainstream primary school with an ehcp and we think he will stay in mainstream for secondary. He has a girlfriend who doesn't have learning disability and they adore each other. His best friend outside school is 2 years younger than him and intellectually they are about on the same level. He has been dry in the day since aged 5 but still wets the bed most nights despite meds.

I don't work but I also have other dc with SEN so I'm not sure if I could have worked with just him.

The main problems have been funding and hospital admissions. Funding has been an absolute nightmare to be honest. The forms for things like dla and ehcp are complicated and depressing. We also got turned down at renewal when he was 4 which was soul destroying as well as being a financial disaster. It took me 2 years to pluck up the courage to apply again. The hospital appointments/admissions are hard. We have to fight for what he needs as the nhs is massively struggling. Waiting times are long. I seem to be chasing up hospital appointments weekly and it was a lot worse when he was younger.

My son is a teenager with a disability and has several friends who are teenagers or young adults with DS.

Things to consider: It will be impossible for you and your husband to both work full time until your child is old enough to move out and live in supported accommodation. Child care is very difficult to find, especially as they get older. Kids over 11 usually don't need looking after outside school so there is nothing available for that age.

Everything is more expensive. Scope say around £580 extra per month, more to raise a kid with a disability than one without. But you will get DLA and maybe a little bit extra depending on your situation.

However there is no joy to compare to seeing your child achieve something that is so much harder for them than other kids.

I wouldn't do it . My cousin has DS and seeing what his parents have been through trying to get assistance has been awful , social care and NHS are broken , it nearly destroyed them as a couple and the two children who came after him totally had to raise themselves as every decision had to be based around him and meeting his needs. It was really only as an adult that him moving into assisted living gave them a life .

Not a parent but a friend. There is such a broad spectrum of ability for children with Down's. Some children are toilet trained, verbal, have a good understanding of the world around them, can have enjoy adult relationships and lifestyles. Some children are non verbal, incontinent, have little awareness of danger and will need 1:1 care in adulthood. If you have a child who fits the second profile, it is very challenging as a parent. All the best.