Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To want to know if you know of any adults with Down Syndrome that live a truly happy and fulfilling life

60 replies

Vanessatiger · 08/02/2018 00:13

I have a close relative with Down Syndrome, still a young child (5) and the prognosis isn’t looking great- challenging behaviour, hyperthyroidism, glacuoma, speech delays, difficulty with gross and fine motor skills. They are having her assessed for autism as well. :( said child pees and poos constantly in their trousers without any indication they have done anything until we smell or see it. We put diaper on her but she’d remove it herself. They are capable of dressing themselves when in the mood. She’s very stubborn as well and throws about 10 tantrums a day. Sometimes we don’t know why.
People who gush about their child with Down Syndrome as being special and a gift, good on you but all I can see is loads of doctor’s appointments and fighting the authorities over their rights over x and y. And dealing with a challenging child who won’t dress or undress, who would spit out food on the floor, in restaurants, at the dinner table. Who’d not respond to consequences or reward/punishment. Who’d scream out loud for something we don’t know why and let’s say all the time during the day. It’s very very challenging and it’s breaking my sibling. I’ve never seen my sibling this unhappy and this tired and this resigned about life. We love said child to pieces but the whole family wish the syndrome would go away. I’m sorry if I offended anyone with my remarks.

Will there be light at the end of the tunnel?
Will it get better? Will people with Down syndrome eventually hold down jobs, look after themselves and find love? I read on DailyMail they do (but it’s the DM). Any real life experience here?

OP posts:
Notevilstepmother · 08/02/2018 16:10

I’m sorry it’s so hard for your family right now. I think it’s probably the worst age, you are dealing with continence issues and toddler tantrums at the same time as all the medical stuff with a child who can’t express their distress in any easy way.

I think that as the child gets older she will improve and be able to express themselves and that will make life much easier. I’ve known several teenagers with DS and they have been fine at school with support.

MatildaTheCat · 08/02/2018 16:13

Having reread your OP a lot of this behaviour sounds like frustration at not having the communication skills to convey her needs and wishes. Are the family using signing? That helped my friend. And the food issue may be an ASD trait that can be managed and also may improve. Again, friend’s ds had a very restricted diet for years but it has improved.

They need specialist advice on all of this...are they getting it?

MuseumOfCurry · 08/02/2018 16:15

OP, I'm sorry you're having a tough time. I can't even imagine how difficult this must be.

I also think the narrative around Down's syndrome is enormously unhelpful for families who are at the sharp end of dealing with significant challenges. That's probably not helping. It must be really hard to feel as a family you have to keep going with this 'sunshine special child' stuff.

Couldn't agree more. I think that there is a tendency for people not affected by Downs to sentimentalise children living with it, fomented by pro-life factions.

I would imagine that it must be terribly difficult to worry about your child never reaching complete independence, realising that they're different, etc.

londonrach · 08/02/2018 16:27

Op. everyone who has downs are different. As a nhs worker ive seen people living indepentantly with limited support (and in one case was baking A cake when i visited for her friends who were coming later...it smelt amazing) to one young man with early dementia (he broke my heart). You cant lump everyone together. 5 is vvvv young. X

Vanessatiger · 08/02/2018 17:53

All the replies brought tears in my eyes

OP posts:
UnderTheF1oorboards · 10/02/2018 19:25

Hi OP,

I'm so sorry to hear about this. i usually pop up as a cheerleader for kids with DS (mine is 7) and I totally stand by that, but I would never pretend it isn't hard work. I will start by apologising if any of what I'm about to say is way off-beam.

You have to throw a lot of the rule book for raising NT children out of the window with our kids. They have a different psychology and learning profile. Crack that, and a lot of the behavioural problems disappear. Have a look at this

Developmentally your niece is too young to be diagnosed with autism. I'm not saying she doesn't have it; she may well do; but developmental delay in children with DS means that an ASD diagnosis at age 5 would not be reliable. Please also be aware that many DS traits and behaviours can look like autism but actually come from a very different place psychologically.

No, she won't respond to consequences, reward or punishment. She doesn't have the understanding to anticipate 'If I do x then y will happen'. With the best will in the world, it's unfair and unrealistic to expect her to. This is where you do things differently. If my NT DC was refusing to get dressed or go to school I'd tell him what the consequence would be if he continued to misbehave, then I'd carry it through. With my DC who has DS I'd give him a big cuddle and (through gritted teeth) tell him how lovely he is. This will relax and distract him enough that he will then do what I want. It's counter-intuitive but it works. It also breaks the drama cycle. Young children with DS love a bit of emotional drama and reaction, and will engineer situations to achieve it. It doesn't matter whether that reaction is positive or negative. So if I spit food in a restaurant, Mummy and Daddy will be cross and tell me off, maybe take me out of the restaurant. I didn't enjoy the telling off but lovely drama! I'll do that again! Again counter-intuitively; ignore, no eye-contact, clear up quietly with no reaction or drama. She'll eventually get bored and stop.

That said, there may be sensory processing issues. Try to get her assessed by an occupational therapist specialising in sensory processing issues. We did and it was revelatory.

Our children are very emotionally intelligent, they have poor auditory and short-term memory, and they also have great fear of failure. This can mean they will try their hardest to avoid challenging situations, and NT people may not always recognise when a situation is challenging for them. One of my DC's less endearing habits is deliberately wetting himself (he is 95% toilet trained) when he's about to go into PE at school. He loves the activities but can't cope with the echoey quality of the loud noise in the hall during the lesson. Could there be something in her environment which is bothering her?

What support are your niece's parents getting? It sounds like maybe not much. There's a saying that behaviour is communication and that's acutely true for our children. Working out exactly what they are communicating can be challenging.

Does your niece have any speech? If not, do her parents or any of your family know Makaton signing? Do you think it's possible that she's frustrated because she can't communicate? Visual learning is a great strength for people with DS and many learn to read early. Could you teach her to hand you different flashcards with a mixture of words and pictures, for example a picture of a bed with the word 'tired', a picture of a heart with the word 'cuddle' or a picture of a cup with the word 'drink', etc. to express what she wants? If you repeat the words on the cards with her this will also help her speech. If you are in the UK your local childrens centre or Downs support group should be able to point you in the direction of Makaton lessons and support. Have a look at www.makaton.org/ and singinghands.co.uk/. Definitely buy her some of the Singing Hands stuff, I never met a kid who didn't love it as well as being a great therapy tool.

The toileting doesn't sound too out of the ordinary. Some children with DS can toilet train at age 2-3 but many are later, some even as late as 9. As with everything they have to learn it takes them longer to get the hang of it and they will often not be physically ready until later. It could be years unfortunately, it took us about three. She will get there but they key is to take any emotional load out of it. If people get frustrated with her when she wets or soils that could become a vicious circle. lots of praise when she gets it right of course.

I could go on and on and on, but probably more helpful if I just leave this here. It's a great website for anyone to get their head round how people with Downs tick and what we can do to help them reach their potential in all sorts of ways. I've linked to the US site but there is a UK version.

Good luck OP. These years are hard but all will be well.

Vanessatiger · 11/02/2018 13:25

Thank you for your long reply, really appreciated!

My niece lives in a single parent household, my sibling is severely depressed, it’s a sad situation. The dad is out of the picture, will not help with anything.

OP posts:
UnderTheF1oorboards · 11/02/2018 17:10

That's tough. Is she in touch with a local DS support group? There are some really great ones which run therapies and services for the children.

hula008 · 11/02/2018 17:14

Hayley Goleniowska speaks about her experience as a parent of a child with Downs Syndrome - there is a TED talk on YouTube

SomethingNastyInTheBallPool · 11/02/2018 21:51

Some great advice and suggestions from UnderTheF1oorboards.

New posts on this thread. Refresh page