Help me get my head straight... please

[lou031205]

It seems that everything is happening at once.

DD1 has been having very poor behaviour for 3 months +. Really since all of her Statutory Assessments

Since December SALT dropped out the window completely. However, I complained, and had a meeting with them on Monday, and they have said they will try to do better.

In December our fabulous OT left her Trust to go travelling, and she told me she wasn't being replaced, but DD1 was one of her 'core children' who would continue to have therapy (our OT was going into preschool every half-term to assess & advise). Since then we have heard nothing. I phoned two weeks ago, and although at first very defensive (new OT is part-time, already has her own caseload, etc), the new OT said she thought she needed to go in to see the setting. But nothing has happened so far.

We saw our Paed on Weds, and DD needs a new E med, because she is tremoring.

On Monday, I was told that DD1s SENCO, Keyworker and main 1:1, who she adores, is leaving in 4 weeks. She is being replaced by a combination of two existing staff, one of which seems to delight in telling me how difficult DD1 has been that day. I know she is difficult, but really, even a little positive comment chucked in would sweeten the pill.

So, my difficulties are these:
-DD1's current adaptive handrail on the stairs is being outgrown. Do I just phone OT and ask them to sort it, or can we adjust it ourselves?

-Wheelchair services claim to be ordering a Mac Major, but nothing has arrived yet, and we only have a verbal confirmation.

-DD1's behaviour is very difficult when out and about for walking. It took me 40 minutes to walk 85 metres on Tuesday. I am beginning to feel justified in thinking that she should be getting High Rate Mobility (she already has a blue badge), but am aware I will need documentation of her difficulties. Who helps? Is it an OT issue, or a Paed issue? I took video evidence to the Paed, and he said "that must be some sort of record...", but how seriously he took it I won't know until I see his report. The footage contains a clip of DD1 trying to walk into a busy main road because there was a stone on it, which she wanted; as I pull her back from the road (she was wearing a crelling harness), a car whizzes by.

-DD1 is fortunately a small 4 year old, so can still use her Group 1 carseat, but she has slightly low tone. When she falls asleep, she flops forward in the seat. I am wondering if I need to get OT to look at it. She did mention her carseat in relation to the difficulties I am having getting DD in the car when she is melting down, because I am getting injured.

I am just thrown by all the different changes all at once. Everyone seems to be disappearing and leaving us to it!

Lou not sure I know of anything sensible to say but didn't want you to go unanswered. No wonder all this is doing your head in. Feel sad for dd that all these changes are happening and for you too. When life's so difficult it must feel like being abandoned that all the professionals disappear. Fwiw I would go for the high rate mobility and get the paed to document on the basis of the video evidence and by going for it at least you will be taking the inititative on something instead of being at the mercy of all these poeple and waiting around for them to either leave or get back to you.

(sends nightcap as it's 11pm)

Crikey.

Sounds like you have a few letters to write. Teaching granny to suck eggs but I would suggest:
ringing the paediatrician and mention you want to apply for HR mobility and it would be helpful if he could document the video footage in his report. Then copy that report to the wheelchair service dept chasing up the Mac Major.
Ring OT re handrail then write confirming what they said and ask about car seat and preschool visit.
Write to SLT dept asking when DD will next be seen.

Big argh for you over the preschool staff changes and the sucky attitude. I'd end up making it worse by saying something like "yes it does require a certain skill to engage DD in a task but when you do isn't she amazing" but there is probably a more mature way of dealing with it. Depends whether you want to make it official by raising with the manager or not.

Good luck with it all

Handrail write to whoever installed it in the first place telling them she has outgrown it and stating if you do not hear from them within 7 days, you will adjust it yourself. Add a bit about Health and Safety and how dangerous it is for your dd to be using equipment she has outgrown on stairs.

-Wheelchair services write to them confirming verbal conversation and ask when you can expect delivery.

-DD1's behaviour when out walking and higher rate. Go and see your GP, show her the video and ask her to write a letter based on her difficulties and video evidence. Tell her what you need the letter for and she should be able to say that she feels your dd should be eligible for higher rate. GP is much quicker than Paed's, OT etc. She should be able to provide letter within a few days.

-DD1 car seat also mention this to your GP and get her to write a letter to whoever supplies car seats.

GP's usually charge about £30 to write letters, but you can literally tell them what you want them to write (obviously there must be evidence of this or past history) and it is available in a few days.

Good luck.

Thank you all it's so good to get support from people who know what you're talking about.

Most OT departments don't actually supply car seats but they will supply info and suggestions of what might be best. My own son was pretty floppy and we ended up getting a Britax SN seat in the end, tho self funded

On everything else.. nag, follow up in writing.. then ring !!
I have always found being a pain, the most productive method

Macforme, oh yes. We don't expect them to fund a carseat, but some advice would be great, because surely a 4.4 year old shouldn't flop forward when they fall asleep? The thought of the strain on her neck in an accident is very worrying I also wondered if we might be able to find a charity who would fund if the OT report said it was necessary?