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Anyone else with child with DS?

25 replies

TelephoneTree · 11/03/2013 22:08

DS was 2 a month ago and I'd love to hear from other mumsnetters with a LO with DS!

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bochead · 12/03/2013 13:21

bumping for you!

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sonora · 12/03/2013 14:31

Hi TelephoneTree my son has DS and turned five a few months ago. He started school in September at our local mainstream primary and is doing really well. Does your son have portage / SLT etc? Wasn't until ds started school I realised how much time was taken up taking him to various groups and waiting at home for the steady stream of portage, speech therapists and the dreaded HV!

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proudmum74 · 12/03/2013 19:36

Hi TelephoneTree - I have a DD with DS who will be 3 next month.

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TelephoneTree · 13/03/2013 13:47

Hello!!
How lovely! We go to a local SAL group once a week and that's about it formally. The rest of the time is play groups, music groups, soft play and other bits and bobs. What sort of tasks should I be doing with him in the day other than memory games and flash cards / brill kids?? I find it so hard as have two others too.

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devientenigma · 13/03/2013 15:14

Hi, congrats on your LO, I too have a son who has DS, he is now 12 year old, so advice from me may be a little dated other than a trick with the tongue. Some say it doesn't work but I believe it did for us. Tap it and it returns into the mouth. I used to say tongue away at the same time, and eventually I didn't need to tap. Obviously there will be times when it needs to protrude, with us it was when he sleeps and is ill but you know your own child and when a nd if it would work.

Take care x

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sonora · 13/03/2013 16:31

The one thing I found the most helpful with ds was Downsed See & Learn programme. It was easy to fit around older dd at home as you only have to spend maybe 5-10 minutes a day. The programme is great for speech and language skills and ds still uses the programme at school and in speech group.

We were started off by our SLT when ds was around 2ish. You used to be able to download from the website for free but there is a fee now or you can by the ready made (but pricey!) kit.

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2old2beamum · 13/03/2013 21:19

Telephonetree I have 3 adults with DS (all adopted) We are so lucky they keep us sane as we grow old Grin
Enjoy your LO
Agree with devientenigma re tongue it does work.
The main intervention we had was portage which did work.
Both daughters went through MS school and both got 2 GSCE's (not A* I must add!)
Good luck to you all

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TelephoneTree · 13/03/2013 21:50

What is portage exactly? We don't get it here, I've already enquired.

Our LOs tongue doesn't rpotrude yet but thank you for the tip. The main problem I'm having is getting him to 'co-operate' with learning tasks like matching and memory games etc.

We have the see and learn flash cards but he doesn't seem to be progressing! aaagh!!!

We love him to pieces though and he loves the brill kids programme and had started signing as a result.

I'd love to hear more what your kids are up to and ideas for things I should/could be doing!

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sonora · 13/03/2013 22:26

For a long time with the see & learn ds didn't really progress at any great rate. Intially it was really good for encouraging ds to sign more and is only really since pre-school that ds started with the picture / key word matching.

You're doing all the kinds of groups and activities I was doing with ds at two. We also used to go swimming lots which really helped with his muscle tone. Portage is a home visiting education service that helps children achieve their developmental milestones through play.

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devientenigma · 14/03/2013 08:23

wow, well done 2olds DD's. We are just starting see and learn at 12 year old Blush and the profs want to put it on a back burner again.

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sonora · 14/03/2013 09:23

devientenigma is your SALT not supportive of see & learn? The thing I like about the programme is you don't have to be at a particular age and stage and just progress when your child is ready.

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sonora · 14/03/2013 09:40

TelephoneTree the co-operating during activities was something that took time to develop with ds ( he was and still is very stubborn at times and has his own agenda about what he should be doing!)

One thing that really helped ( from portage) was building up the time spent doing learning activities and that ds would do at least one activity a day that was adult led from start to finish. For example if posting shapes in a box ds would do the first few then lose interest, so hand over hand we would finish the activity together.

Sometimes the activity would only be 1-2 minutes long, but over time this built up and we would do two adult directed activities a day.

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devientenigma · 14/03/2013 09:41

sonara SALT is supportive of see and learn it's just theres a lot more, more important stuff to tackle with DS than this programme iyswim x

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sonora · 14/03/2013 09:46

Completely understand, have to look at the bigger things before the smaller things can fall into place.

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2old2beamum · 14/03/2013 21:27

devient thanks but DS with DS struggles to recognise his own name but he is so caring it makes me want to weep. As you have said before it is a very wide spectrum.

Telephonetree enjoy your son Smile

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devientenigma · 15/03/2013 08:51

lol 2old must be a man thing.

I 2nd enjoying your son Telephone

all I remember at around 2 year old was intensive physio, day in, day out, was a nightmare.

I'm unsure these days but you may be entitled to a nursery placement from 2 year old, ask your LEA.

and another silly Q, you are in reciept of DLA and CA?

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TelephoneTree · 18/03/2013 22:09

ooh what's CA??

Thank you for all your thoughts - very helpful!
We are also using Brill Kids' Little Reader if that's of any interest to anyone. You can apply for a free / discounted copy if you have a child with special needs. Since we started it, DS has exploded with his signing and general expressive language and he really loves doing it.

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BertramBertram · 19/03/2013 16:25

Interpreted the thread title wrongly and wondered why you had posted in SN - read "Anyone else with child with DS" as meaning "Anyone pregnant who has a DS" Grin

(sorry - made myself smile at my stupidity)

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TelephoneTree · 26/03/2013 22:28

Would anyone mind sharing play ideas that came out of portage??
struggling...

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proudmum74 · 27/03/2013 07:26

Morning! The type of things we did with portage were:

  • jack in the box (teaches action and reward)
  • press button toys (build hand strength)
  • lots of posting games (help with hand coordination)
  • lots of time on the tummy, looking at mirror (to strengthen core)
  • hiding things under a coloured scarf, but still visible (understand concept of things being hidden but still there)


We had to wait until DD was 10 mths old before we got Portage (LEA boundary issues), so I got a great book out of the library by Gymboree that gives lots of fun play ideas that help development.

HTH
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proudmum74 · 27/03/2013 07:38

sorry, just realised your DS is 2, not 2 mths (really should learn to read properly!) Grin


We stopped getting Portage support when DD was 1, but the type of things that nursery /CDC recommend (DD is almost 3 are)

  • matching games, i.e. photos of her favourite toys that she matches to the item
  • posting balls down drain pipes
  • threading balls onto a string
  • pictures of her friends doing things e.g. Walking, jumping, skipping etc. to help teach verbs. The nursery point to a friend and she has to find their picture & say /sign what they are doing


  • she loves dolls, so we use them a lot in role play, e.g. Teach doll how to do something first & DD will usually copy.


Then the usual stuff to try and help strengthen her muscle tone, so taking toys to the local swimming pool etc.
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sonora · 27/03/2013 08:14

Hi TelephoneTree Two seems an age ago, but do remember Portage encouraging ds to do simple jigsaws, threading, using role play for turn taking and language / signing skills, also lots of things for hand strength ( hiding little farm animals in playdough and ds had to pull them out)

Another thing was lots of sensory type stuff....playing with different textures....paint, cornflour, shaving foam etc.

If you look on the Downsed website they have two really good books for developing gross and fine motor skills.

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sonora · 27/03/2013 09:36
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TelephoneTree · 27/03/2013 20:19

Thank you so much for these! Do you know I actually have those books but totally forgot about them! I'm such an idiot. Thank you for the reminder!!!!

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TelephoneTree · 27/03/2013 20:20

The play ideas you've all given me are really helpful - I've now started a list that I can dip in to every day. Just what I need!

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