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

[Bluebirdonmyshoulder]

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?

Thanks!

[MooMummyMoo]

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.

[hazeyjane]

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?

[hazeyjane]

Clumsy fingers tonight, StarfishOrange!

[hazeyjane]

Glug

Now I have

Sorry to hijack, bluebird.

[sneezecakesmum]

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!

[sneezecakesmum]

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

Basically try some out!

[Bluebirdonmyshoulder]

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.

Time to start shouting. No more Mrs Nice Bluebird.

[MariaNoMoreLurking]

Be sweet, to start

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

[Bluebirdonmyshoulder]

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.

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]

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.

[sneezecakesmum]

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!

[sneezecakesmum]

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]

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

[Bluebirdonmyshoulder]

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!