If your DC with DS is at the severe 'mentally effected' end of the scale, please can I ask you something?

[MrsGrotBag]

Sorry for the appallingly worded title.

My DS with DS is a couple of months old and I'm just wondering at what stage we will get an indication of how severely effected (or is it 'affected' I never know!) he is mentally rather than physically by the DS.

Is there anything about how alert they were as a baby / how much eye contact / how much they moved their limbs around etc etc that you can remember from when they were a baby compared to NT babies?

Thank you.

Hi Grot.
Congratulations on the birth of your baby.

If I were you,I would for now, assume and treat him like any other baby.
People with DS differ enormously, it isn't a blanket thing. I know people with DS who work, live independently, have partners, a great social life, can read and write and so on and so on.

Others are more dependent on support.

What is extremely helpful for young children with DS is to use signs with speech to promote understanding and eye contact.

I'm not sure how much time and energy you have to be researching this as the mother of a young baby but Sue Buckley is a driving force in this filed and well worth reading what she has to say.

Aim high and start early.

Thanks moondog - I can't get the link to work but will google her. Do you have a DC with DS?
I'm just wondering if it's possible to see which end of the spectrum our DS might be....

My dc wouldn't be cuddled wouldn't give eye contact and didn't really play with toys just wasn't interested - and just for your info the word cognitive describes the mental side of things and understanding the world ie today and tomorrow who people are etc

Good luck with your baby - and the earlier you can intervene the better

thank you so much for your reply. did you notice anything when your DC was a baby, other than the eye contact (ie too young to play with toys)? What sort of intervention have you found helpful? x

Hi- Congratulations on the birth of your DS.

I have a beautiful dd with DS who has just turned one. I really do understand your need to look for any sign of possible development delays from an early age, I was very much the same when my dd was first born, but unfortunately you really can't tell at this age and all it will end up doing is making you slightly obsessed/crazy.

I agree with Moondog, the best thing you can do at the moment is to just enjoy your ds and treat him exactly the same as you would any other dc. I'd also push back if anyone tries to tell you to lower your expectations of your dc, after all no-one knows at this stage what he will or won't be able to achieve, all you can do is give him every opportunity, plenty of support and hope for the best (which is basically true for any dc).

In terms of what you can do to help - from the start I have sung to my dd as this makes her smile (though I've no idea why as I'm completely tone deaf!) . We've made sure she had plenty of 'tummy time' (this is one of the best tips we were given by the hospital and it has really helped her gross motor skills). She loves having plenty of eye contact & hugs, we read her plenty of brightly coloured/textured books. We play lots of games like 'row row' and tickling that have helped teach anticipation etc. We also attend all the local groups as she seems to pick up things from other dc far faster than anything I've been able to teach her.

We started physio, OT, SALT, Portage etc. pretty much from the start and all seem to be helping. Yes she's slightly behind other 'NT' by a month or so, but she's getting there in her own time & when she does achieve a milestone it's the most amazing feeling ever because you know how hard she's worked to reach it!

Forgot to mention - Good luck & feel free to PM if I can help at all!

No Grot, but I'm a SALT and work with a lot of people with DS. I remember one baby in particular who was able to put three signs together to convey a complex message (tired + bed + home) at about 11 months, before most babies are even saying a word. Amazing. All because her mother had signed intensively with her from the start.

Yes, check out Sue Buckley in general and the Downs Syndrome Association.

Congratulations on the birth of your little boy. My ds has DS and was diagnosed after he was born...I remember in the early days constantly obsessing and stressing about what ifs, how far will he be behind developmentally, how he will be as an adult. Ds is three now and whilst I know he is behind developmentally I really don't think it's any indication of how he will be as an adult. TBH I don't even really think about developmental milestones anymore....I know ds will always have his delays....he'll just get there in is own time.

I know that ds continues to make the most amazing progress every day and early intervention can help enormously. We have weekly portage, regular speech and language therapy and occasional pyhsio. Ds goes to mainstream nursery where being alongside typically developing peers has had a huge impact, especially with play and social skills. We also take ds to various toddler groups and other activites (singing group etc)

moondog mentioned Sue Buckley, she is the founder of an organisation called Downsed, they do research relating to DS and have developed some leading speech and language programmes, they also do some early intervention groups if you live near Portsmouth.

Downsed

Most of all, enjoy your baby boy.... still can't believe ds is a toddler already, full of noise and mischief!!

Oooh moondog - that's amazing. Is that true for all children that they can communicate more than their language allows? I tried signing with my 2 older ones but neither seemed to sign back in any way. I was thinking about learning makaton, or would I be better to learn BL or just learn basic signs?

We haven't as yet received any contact from SALTs, Portage etc - should we have done by now (DS nearly 9 weeks old)?

Proudmum - thank you and your DD sounds so lovely!! DS definitely responds to my dreadful singing(!) and loves watching the older two mess about around him. I can't decide if he's smiling yet as we've had about 3 i think over the past 3 weeks but his eyes go really wide and surprised when something interesting happens!