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meeting today about ds, clinginess and occupational therapist....wish me luck!

21 replies

hazeyjane · 17/09/2012 09:10

I wrote a thread here after an awful appointment with ds's physio and ot, you were all very lovely and wise and made me feel a whole lot better.

So today dh and I have an appointment with the physio an ot. We have written our list, and girded our loins (never quite sure what that means!). And I have written on my hand something that zzzzz said on that thread,

'Focus on self confidence not separation and you will build a strong stable young man.'

as it seemed a very positive way of looking at ds and his separation anxiety.

Anyway, we are off to nursery now, and then off to meeting after lunch....

...wish us luck!

(note use of dots!)

OP posts:
TheNinjaGooseIsOnAMission · 17/09/2012 09:39

good luck, hope they apologise at the very least!

zzzzz · 17/09/2012 09:47

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StarlightMcKenzie · 17/09/2012 10:13

Good luck Hazey!

UnChartered · 17/09/2012 10:14

honking all the way with you hazey

NoHaudinMaWheest · 17/09/2012 12:08

Wishing you all the best.

Firsttimer7259 · 17/09/2012 12:10

Go hazey - you've been handling this really well - keep going keep calm and I hope you get a decent solution

hazeyjane · 17/09/2012 12:29

Thankyou everyone, just cramming my face with rye bread and peanut butter - fighting food!

It's good to know I will have you all honking with me!

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porridgelover · 17/09/2012 15:14

Hazey I guessed it was you from the thread title....hope it goes well. Must be about now.
Hope you get a personal apology and commitment to working with you not against you.

starfish71 · 17/09/2012 15:18

Hope appt went well hazey, Honk!

EllenJaneisnotmyname · 17/09/2012 18:53

Ditto, hope it went well.

hazeyjane · 17/09/2012 21:57

Thankyou for all the honks.

The meeting lasted nearly 3 hours, and was very interesting and frustrating. The ot agreed that she had stepped over the mark and apologised for ambushing me. It was interesting to talk to her about what her role in ds's support was supposed to be and then to have to say that I didn't think she had fulfilled any of the things she said!

We have discovered (fuck knows why we didn't know in the first place) that they are unable to have any workings with the sn nursery that ds attends (because it is under a different trust), as well as not being able to access equipment from disabled services (another trust), and not be able to access help from the feeding SALT at the therapy centre, because ds sees a SALT (not a feeding specialist) at the sn nursery (different trust) - despite the fact that the feeding SALT at the therapy centre wrote a report on ds recommending him for a gastrostomy, due to his poor swallow and risk of aspiration. We also 'discovered' that ds's lead professional is utterly useless (no shit sherlock).

So I now have to work out a way to sort that lot out.

On the ot/physio front through, I feel we made progress. We are going to see them for monthly sessions, at which they will discuss what will happen at the beginning of the session, they will observe ds playing with us, and then work out a programme of things that we can do that will help improve areas where ds is lacking (is it just me, or does that sound exactly like a therapy session should be anyway!)

Anyway. Ds has just woken up, urgh he has a cold, so i am going to slope up to bed with my clingy boy and go to bed!

OP posts:
justaboutiswarm · 17/09/2012 22:23

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StarlightMcKenzie · 17/09/2012 22:31

Hazel, does your Ds have a statement?

If so, and all this is in it, then you don't have to chase anything. The LA have to make it work and if the different trust thing gets in the way they have to employ independents.

Firsttimer7259 · 17/09/2012 22:40

Sounds like some reasonable outcomes - well done hazey - but I cant beleive that took 3 hours. The situation with the different trusts sounds like a nightmare. What can you do?

Firsttimer7259 · 17/09/2012 22:41

Our handholding thread has vanished!! Hope its back by morning or will have to sound the alarm.

zzzzz · 18/09/2012 09:20

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justaboutiswarm · 18/09/2012 09:53

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hazeyjane · 18/09/2012 13:29

Yes it was a very roundabout 3 hours of getting to what should be a very common sense place. I think that the problem as they see it, is that they have found it very difficult to assess what ds actually needs, because for a long time he wouldn't play, or look at them or let them touch him (this has improved). Our point was that it is their job to find a way (as nursery and portage have done), and that their enlightened 'leave him lying in a pool of snot to scream' approach, was not going to help them assess him in any way!!

I am so cross that I was pointing things out about ds - he doesn't like to be touched softly, he hates touching certain foods and reacts badly to certain noises, he licks walls etc, and for the ot to say, 'oh it seems as though there may be some sensory issues going on, we should investigate that' ...... no shit sherlock.

We have a meeting in January with the developmental paed, SALT etc about getting a statement in place ready for pre school in Sept (he is 2.2). Once he is there the physio and ot will be able to assess him there, because it is within their trust, but then we will have the situation that the SALT he is under now won't be able to because he will be in a different trust (head explodes at fucking stupidity of it all!)

I think I am going to have to be his lead professional, because ds's is useless (hence above situation!) and because I have left 3 phone messages for her in the last week and so far I have heard bubkiss.

I said to them yesterday how hard this all is. When you find out your child has sn, they show you all this support, then make it impossible, or at the least bloody difficult to access, in the meantime there is ds, who is just being a 2 year old boy and me, me who doesn't know the language, or the rules or the system, and is terrified for their child, and has to find a way to navigate a way through it all. I swear I have had more help from the lovely geese on here than I have from anyone in rl.

Thankyou.

OP posts:
porridgelover · 18/09/2012 13:47

Hazey, I feel annoyed for you just reading that...its so obvious that your DS has sensory processing issues and that is probably the biggest impediment to being treated by PT and OT. And leaving him to cry through a session is counterproductive not only for that session but for any hope of establishing a rapport with him to get him to deal with challenges the next time.

But I agree that you have to be the lead....there is no handing it over to the ''experts''. I find that I have had to learn about feeding, writing, gross and fine motor stuff, language, teaching strategies etc etc. No-one else will be commited to getting the best for your child.

hazeyjane · 20/09/2012 06:33

Thankyou, porridge.

I spoke to ds's portage worker yesterday, who has offered to be ds's lead professional. She is great, and knows everyone involved in his care. She is also quite a force to be reckoned with. I'm not sure what is for the best really, feeling a bit undermined by everything at the moment!

OP posts:
justaboutiswarm · 20/09/2012 10:53

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