How do I get my parents to accept dd has ds and move on??

[proudmum74]

Hi - my beautiful dd is now 1 and my parents still cannot accept that she has ds . It was her first birthday party last week & they seemed to spend the whole time making excuses as to why they didn't want to play with her, choosing instead to focus on their other grand children. It's not as if they don't love her, as I know they genuinely do, it's more that they struggle to be around her without becoming emotional.

Yes, I know it was a shock when they first found out, but it's been a year since her dx, surely they should be able to come to terms with it by now?? I'm trying to be as understanding as possible & see it from their point of view. I do genuinely understand that it isn't easy for them and that they are worried about her future, but their denial is starting to impact on their interaction with dd. It just makes me really sad that all they seem to be able to see is her disability to the point where they are unable to see what an amazing little girl she is becoming

Any suggestions on what I can do to help??

Hi - I've had a lot of difficulty with my parents too but in a different situation. My DS has GDD with no dx so for a long long time my mum especially would say thing like - 'until we're told otherwise there's absolutely nothing wrong with him' :(

My family aren't good at talking - we never argue, tell each other how we feel etc. But in the end I had to tell them that I was finding their attitude very very difficult to cope with. I try to involve them as much as I can manage without them driving me barmy - so got them watching mr tumble, took them to some physio sessions, asked mum to choose some new cause/effect toys and they seem to be coming to terms with it all a bit better now! Not sure if any of this would help you, you've probably tried it all already! It's a very difficult situation and a shame for them to be missing out!

I am sorry - what is ds?

Thanks 1980sport, it's good to know I'm not alone! - they live a couple of hundred miles away so day to day contact isn't always possible, but we skype regularly in the hope they will see that she is developing new skills all the time (albeit in her own time)

Sorry whatever17 - ds is down syndrome

Just a thought, would they read any info... there are lots of books and info around, (I'm sure people would recommend if you asked them for good ones.) and you could tailor what you sent them with what you wanted them to 'get' IFSWIM...

my parents took a while to come to terms with ds's dx, (not ds, ASD and Learning Dis) and they see him most days, so they experience the little steps he makes. He is now 4.5 and I would say they still are not 'confident' with him, but they love him to bits.

I can understand your frustrations, with them tho, TBH.

and PS Hi sport hows life with you?

My ds is three and has DS, I always thought that with my parents and inlaws that it was a generation thing. They are in their late 60's and had some pretty outdated and err 'interesting' views about DS. I also felt that they tended to see the DS before they saw my son which I'm sure impacted on their initial relationship, although I know they love him deeply.

We did as signandsmile suggested and got them some books about bringing up a child with DS (more real life stories then full on info books)

Road Map to Holland

Gifts

We also took them to some social events run by the DS support group, this really seemed to help.

Thanks Sonora - I agree it probably is a generational thing; my mum is fond of telling me how lucky I am dd was born now as "40 years ago she would have been put straight into an institution!". The other challenge that they have is that they have lived next door to a family who have a child with down's for over 20 years, so they have a daily reminder of the challenges my dd is likely to face when she is older. Because of these experiences they feel as if they know all there is to know about down syndrome.

When my dd was first born I did give them copies of all the literature the down syndrome society provided us with, but they didn't want to read it; I will try again with 'the gift' book as it looks lovely. I've also tried to persuade them to watch 'something special' but they've dismissed this as just a Kids programme.

We even invited them to the party we had for my dd with all the local 'nt' to try and show them how well she is integrating with other children and how her development really isn't that far behind, but they left after less than half an hour.

I guess I just need to be more patient & hope they'll get there eventually...

It's fustrating isn't... there are members of my family that still don't 'get it' no matter what I do or say.

I'm forever sending friends and family links for all things relating to DS ( I'm sure I drive them nuts!) I know you said they wouldn't watch something special, what about something more grown up like 'The Specials' about a group of young adults with DS living in Brighton!

The Specials

Oh wow, I've never heard of this but I've just taken a quick look and it's lovely. I'll watch more episodes tonight & then suggest it to my parents.

Thanks!!

My FIL still doesn't accept that my ds is deaf and ds is 5 in a couple of weeks. We still get questions like "When will he not need to wear the hearing aids?" or "When will he grow out of it?".

We've tried giving him literature and I don't think he's read it tbh. We've tried talking to him and I just don't think he listens.

He is now interacting with ds like he does with dd but I would say its only been in the last 6 - 12months. FIL lives 100 miles away and sees the children a handfull of times a year and I don't think that helps. I think that sometimes people need to spend time with the child in question to see past the disability. I have often wondered if FIL saw ds on a weekly basis would he have interacted with ds earlier, would he accept the dx? I think he might but we can't change that.

I think it's definitely a generation issue. As late as into the 1970s children with SN were put away into 'subnormality hospitals' and the result of that was that most adults only ever saw healthy NT children, and so I think they can get a bit baffled by developmental issues in children that are not going to go away.

When we went through dds dx for ADHD my parents and sister both said oh Shes just bright and lively and that I was parenting her too hard!!!! Ffs! etc etc then we got dx and I firmly told them this is what's wrong and also expect a dx of aspergers as well. Here's some reading material here's the book on how we manage her behaviour. Please otherwise treat as a NT child. Grandparents are tricky and we now going through the same thing with dd2! Do they look after your little one at all? Can you arrange for them to watch her for you or come over and play with her on and a one to one basis?

It's a good idea, we were hoping that when they came to her party last weekend they would stay with us & maybe babysit for a few hours whilst me & dh went out for lunch so that they could spend some quality time with dd. Instead they chose to stay in a local hotel (despite asking them to stay with us as we have 2 spare bedrooms) and ignored all invitations to stay for dinner, join us for breakfast, take dd to the park etc.

It's just all very weird, as apparently when they're not around dd they spend their entire time telling anyone who will listen just how lovely she is.

I'd agree with the generation thing - my mum has said to me -'where have all these 'so-called' conditions come from!'

Someone once said to me - I'm sure your parents must be a great support. I thought uh no they're harder work than DS!

(hi sign - all good here, makaton 1-4 complete! Hope all's well with you!)

at the risk of high jakcing the thread..well done sport! ds is getting more and more words and using alongside signs as well... pm me if you fancy a chat.

Hi, my little boy has DS and my mum has taken it the hardest (he is one too) but she does love him and is very interested in his development - too interested (drives me mad!!). I know she loves him but she always sees the DS first and not the person. She was previously a nurse/midwife and I think she holds a dated view of what life will be like for him.

Every time I saw her for the first year she had some ds related story or information to give me, she called the DSA and got leaflets sent to her (she loves a leaflet!!) in the end I had to tell her that he was a person first and had ds second and there was no need to bring it up every time I saw her (tbh I think my sister too the brunt of it!!).

She minded him for one day a week when I went back to work and I think that helped. Are they worried about hurting her, because she is maybe less able to sit up or something?

Hi Wips - to be honest I'm not sure what they're worried about in terms of spending time with her. Physically she's doing really well, she was able to sit alone from about 9 months and is now so close to being able to crawl, so she's really not that different from any other child at the moment.

To be honest I think they have the same problem that your mum used to have, as it's fair to say they only see the DS instead of how beautiful my dd is & they just aren't able to get past it - not helped by the fact that my mum is an educational snob who thinks it is essential that everyone should go to university. They therefore choose to spend their time with their other 'nt' grandchildren instead.