Here some suggested organisations that offer expert advice on SN.

Standing frames and OT - concerned bluechick is being short-changed

(20 Posts)
Bluebirdonmyshoulder Sun 03-Nov-13 18:24:28

Starfish great idea, thanks. Will Google!

Maria let's hope so! I do get on well with her physio, think she just needs a nudge.

sneezecakes thanks, v helpful. So confusing to know who does what!

sneezecakesmum Sun 03-Nov-13 10:54:51

Physios feet, not the boys...they were flying (sort of grin )

sneezecakesmum Sun 03-Nov-13 10:54:07

Our first walker was a battered rifton gait trainer off eBay for £50 but it was brilliant and the boy walked a dream in it. He was 2. Not ideal but the feet were definitely dragging.

sneezecakesmum Sun 03-Nov-13 10:51:50

It was the physio who sorted the stander and the walker. The OT did the toilet seat, but also did the jenx chair for home. Not sure who did the triton chair as it was at nursery. Bit confusing!

MariaNoMoreLurking Sat 02-Nov-13 23:50:50

Bluebird, I agree. And so will the physio, the 'borrowing' was only meant to be a 10min job to show you're not demanding bluechick have a frame when she's way off readiness for it.

Requesting help to use a potentially unsuitable, knocked-about, unofficial frame should shame the therapy services into rapid action.

Good luck bluebird

I had another thought. Are you near any of the Kidz exhibitions? Not sure when or where the next one is running but there is Kidz South, Kidz in the Middle and Kidz Up North. Brilliant exhibitions with lots of equipment available to try out. We went to Kidz South in Reading June and DS's physio came with us (all the way from Cornwall!) and tried out loads of equipment which we've subsequently ordered (some through local authority and some privately).

If you can get to one of these shows it will give you a really solid idea of what's available and you can try some things out.

Bluebirdonmyshoulder Sat 02-Nov-13 17:42:02

Sorry, but I'm inclined to think that if she needs one then she should have one. It shouldn't depend on borrowing a friend's, or a charity. smile

We barely know these people anyway so I wouldn't ask as I don't think it's appropriate.

The fact is her physio has mentioned it in the past, I think I just need to inject some urgency.

Thanks again all.

MariaNoMoreLurking Sat 02-Nov-13 17:34:46

Be sweet, to start wink

Make sure bluechick has had a play with her little friend's frame, and show physio a little clip of her having fun grin. Then ask her if she knows anyone selling a second hand frame, and if she knows any charities which would part-fund one.

Bluebirdonmyshoulder Sat 02-Nov-13 11:01:02

Thank you all so much, excellent advice. I never cease to be amazed at the wealth of experience and knowledge on here and the way in which everyone wants to pitch in and help out. thanks

Time to start shouting. No more Mrs Nice Bluebird. grin

sneezecakesmum Fri 01-Nov-13 21:40:22

Luckily DGS was ok in the monkey stander, I think because of his low tone, and played fairly well in it. He hates and loathes his leckey upright stander and will only tolerate about 10 minutes in school (none for us). And for his TA he will walk (figuratively) over hot coals grin

Basically try some out!

cheers wine hazey

bluebird when you do start talking about standing frames, ask about different makes and models. Lots of us seem to get given the Jenx Monkey stander as a first frame and I know lots of people (including ourselves) who have had major issues with it. DS now has a Leckey Squiggles standing frame which is totally awesome - easier to get him in and out of, better support, and he can access his toys and join in activities because you can take the tray off the front.

HTH xx

sneezecakesmum Fri 01-Nov-13 21:06:22

Children should be weight bearing from the age they would normally be expected to stand and start walking, so bluechick is at that age. The weight needs to go through the hip joint because it helps hollow out the cup it sits in, in the pelvis. This helps prevent hip dislocation. We had a monkey prone stander, so a lean forward which is easier than upright. Gradually moved into upright.

Wheelchair services also sort out supportive buggies rather than the sack of potatoes look some conventional buggies promote in certain low tone children.

So yes, you need to start shouting!

hazeyjane Fri 01-Nov-13 20:37:09

Glug

Now I havesmile

Sorry to hijack, bluebird.

HElloooo hazey, you sure you haven't opened that wine yet wink

hazeyjane Fri 01-Nov-13 19:49:13

Clumsy fingers tonight, StarfishOra*n*ge!

hazeyjane Fri 01-Nov-13 19:48:21

Ds also had his standing frame via the physio. It came after he could sit well, which was probably around 15/16 month-although he had been wobbly sitting for about 3 months before this. He (and I)absolutely hated the bloody thing!

We were fobbed off about OT for a long time, and missed out on equipment, like a bath seat, which would have been really beneficial. The OT we had, completely ignored the obvious sensory issues that ds has, and dealt very badly with his separation anxiety. In the end I called a meeting and it was agreed that we would get a different OT, she is brilliant, and specialises in sensory issues. She also referred us to a community OT, who came to the house to see whether ds would benefit from any adaptations, seating, bed etc.

Do you have TAC meetings or anything like that with Bluechick? That might be a goodlace to bring it up?

<waves to StarfishOramge - new name!>

Your physio may have explained this already so sorry if it's old news but the prime purpose of a standing frame is to aid joint development and joint stability, so even for children who aren't expected to walk they are still worthwhile. They also promote visual development and hand/eye coordination as children can play and experience their environment in a natural upright position.

Having said all that, we didn't get a standing frame for DS until he was 2. Our private physio was jumping up and down a year previously saying he needed one, while our NHS physio was keen to promote his sitting and 'active' standing with Piedros and gaiters leaning over a supporting surface. Somewhere in the middle was probably right but actually now DS's sitting is really really good I have seen him come on leaps and bounds in his standing frame. His posture is better, he's using his hands, tolerating it for longer etc... so perhaps he just wasn't ready until 2.5yrs, really.

That long ramble is really to illustrate that at the stage your little one is at a standing frame, IMO, should be on the agenda in the near to middling future rather than way off. And I'd be questioning your physio on it and perhaps seeking a second opinion from a private physio too.

OT is two things - 1) equipment OT - this is equipment to help with daily living rather than to aid developement (so bath seats, cutlery that sort of thing) and 'health' or 'sensory' OT which is about fine motor skills.

We see our health OT once a month, she joins a physio session, to cut down number of appointments for us and so physio and OT can work together. If you don't have one or both types of OT definitely push for it x

MooMummyMoo Fri 01-Nov-13 19:12:50

We got our standing frame via the Physio rather than the OT, though we do see an OT for other stuff. My DD has a chromosome disorder, she didn't sit unaided until 2 years old. She is likely to walk at some point. She got a standing frame at around 1 year. We got a walking frame around age 2.5yrs. She is now 3.5yrs.

PolterGoose Fri 01-Nov-13 16:47:36

Sounds like the bloody postcode lottery. Have you asked for an OT referral? Our OTs and physio's work in the same team (integrated children's therapy) and refer to each other.

Bluebirdonmyshoulder Fri 01-Nov-13 16:38:53

Looking for some advice.

Bluechick is 17 months and can't sit independently yet. She has a door frame thingy and a 'jumperoo' which she loves. Her physio has mentioned possibly using a standing frame but a long way in the future. She is expected to be able to stand one day and will probably be able to walk.

Was out last night with some mums from a local support group. Mum of another little girl who also has a chromosome abnormality was saying how Girl X now had a standing frame and they were on the waiting list for wheelchair services. She also mentioned their OT sessions.

Girl X is 3 months younger than bluechick, she CAN sit but is not expected to walk. I've met her and she is about the same size as bluechick.

My concern is that we're not getting OT, we haven't been given a standing frame and no-one has mentioned wheelchair services although tbh I wouldn't have thought we need it yet. Girl X lives within 10 miles of us but we are under different local health care providers although same county.

Does it sound as if bluechick is being short-changed and should I be kicking up a fuss? What actually happens at OT sessions? Why has no-one offered us a standing frame? confused

Thanks!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now