Can anyone recommend a bed or system to help ds not fall out of bed .

[bishboschone]

Ds is 2 and has gdd , we are unsure if he will walk but he is getting there with the help of a walker . He is still in his cot but he is heavy and I find it hard to lift him in and out. Can anyone suggest a bed or. Gadget I can use so he doesn't fall out of a bed ? I googled special needs beds and it brought up big hospital cot things . Tia .

Ps although the sides look short,they seemed enough to keep him in bed. My ds is a total wriggler too-we just started him off with his head at the top & he was fine. Still often find him facing the other way though!

Sorry,last message, but we also saw some good options in Ikea & by the firm Kidsaw. You might want to consider things like the bed posts-do they need to be rounded off (my ds would have probably knocked himself out on a corner).

There are a few gorgeous blonde cuties on these boards

The walker was a rollator, from the physio, it was great because when he first started to stand (he used a standing frame) we could lock the wheels and he would stand against it, and then he started to use it when he first took steps. He never took to a Kaye walker, because he would just fall face forward (which he still does now!)

He isn't the best walker, although his gait has improved over the last couple of months, he tends to fall, and tires very quickly, when he is tired he just sits or lies down on the pavement!

He has just been issued the buggy, as he is still very reliant on a pushchair, and when he was assessed by the OT at wheelchair services, she said that he needed the truncal and head support as he tends to slump to one side, and she could feel the early stages of scoliosis in his spine, and a tendency for him to tip his head to one side. It is a Tom Cross Stroller, and is great, they added the side supports and adjust the footplate. He is very comfortable in it, and it is a great height, so it feels as though he is more a part of things when we are out and about. I used to hate seeing him slumped down in the bottom of his buggy. It is also a tilt in space, so he maintains a good posture if he falls asleep and the seat is laid back.

I have a cot bed which turns into a junior bed which I could use with dream tubes ,wedge cushions , bed rails etc. Or sell it and get something else . That ikea one looks good and I could put it round the other way so the gap was against the wall maybe. His danger awareness .. Hhmmm . I think it's ok as he walks with a walker and does get the road isn't good etc . I'm
More concerned but how much he moves at night and If he falls he does fall In a big heap . Lots to
Think about. I expect it's too much to hope my mattress would fit that ikea bed .. Will go and measure .

Run don't walk.. Don't be sorry .. Any help is brilliant.

Also interesting how many 2 year old ds on here with gdd as I've never met one in real life . I feel so alone .

Thanks starfish .. I should join but it scares me so much what our future holds . I should have my head round it all by now but I haven't .

I don't know anyone in the same position either,may have to check out that Facebook group! I found the book 'small steps forward' by Susan Haywood quite helpful. It splits up the areas of development (ie fine motor, gross motor, communication etc) & gives ideas of how to move to the next step. There are no demoralising 'aged 3 months your baby will be able to do X, 6months they will be doing Y' stuff. It's quite cheap on Amazon.

I totally get the fear thing too. I tell myself not to worry too much about the future but its hard isn't it. For what it's worth,walking wise,my ds is 4 & haaated his rollator, any walker in fact. But he now walks pretty well,gait needs a bit of work but it'll come. He got told off for running in school the other day haha!

Thanks run.. I'm told he will walk but it's hard waiting and every day constantly pushing him to try . We have a sequence of things we do everyday to get him to walk. I keep being old he will just get up one day , well he won't , somehow I have to convince him to do it ! Anyway I have found the fb page and asked to join. May in ask though.. Is anyone in the south ?

Lucky you

I'm SW too-Devon in our case!

I am in Wiltshire. I have just sent my SWAN UK registration forms in, I haven't posted in there for a long time, because when ds was included in a study into a particular syndrome I joined the FB page for that and drifted away from SWAN. But ds is going to be in the DDD study, and I thought I would try and look at the FB page again.

I have had so much support and advice on these boards though, have made some some good friends, and enjoy a virtual drink at the Goose and Carrot thread on sn chat every Friday!

I haven't even got an ot.

Sussex.. It's never been offered . Do I need to ask my paed ? Have any of you got a diagnosis ?

Yes, starfish, I remember your thread about ds's birth. Ds's geneticist still thinks Kleefstra Syndrome is the most likely diagnosis, or something very similar ( the study ds is in is looking at novel candidate genes that would be relevant in the diagnosis of the syndrome). But they have opened up the DDD study to include children that are in other studies, and she said that it would be helpful for ds if he was a part of it.

We are in the process of statementing and applying for primary, whilst also trying to get ds to settle at preschool without me. It is pretty hard, and I am aware that without a confirmed diagnosis the practicalities of things like statementing are that much harder.

Ds was referred to the community OT by our regular ot (which he has always had hand in hand with physio) and she came to the house to assess for equipment and advise about things like stair rails. ot has for us taken over from physio a bit, looking at seating for preschool and sensory issues, she has been fantastic. Ds was referred to the community nurses because of his chest and needing occasional oxygen at home.

I've found MN an invaluable source of info & support. We are also in the DDD study after various tests came back negative.

Bish-we have no diagnosis but see an OT,SALT & Physio. Long wait to see an OT but was worth it. They have helped with sensory stuff plus things like chairs for home & school.

Do you get Portage? We found this quite good & they helped us get the Statement (a process you can never start too early).

Yes I do have portage , I haven't got a statement ( I don't even really know what it is to be honest) .. Life is such a struggle at the moment I'm a bit overwhelmed.. Will get on it .. Thank you .

Hi, I have almost 4 year old with GDD, we moved into smaller house and I was forced to put him in a bunk bed; I was terrified, but he is doing really well. I've put 2 bedrails there and the bed is next to a wall, and I alwys put him in sleeping bag, he didn't try to get out once and he is a runner and climber!

Your ds sounds quite similar, mine started crawling at 18 months, walking by holding our hand at 2 years and walking independently at 2 and a half.

Age 2 was awful, it will get better - ds now talks as well, at 2 he didn't say a word!

Also, thanks to this board I have just got Baby Jogger mini city from Ebay as he was too big for MacLaren and I didn't want SN puschair, it's fantastic, check it out. I never liked 3 wheelers but it's great.

I'm also on SWAN UK :).

Good luck with sleeping solutions!