Occupational Therapy

[Tez]

Just had a phone call to say that A is now at the top of the list for Occupational Therapy. Was asked alot of questions about his dyspraxia problems and his sensory problems and was told that the Therapist will be coming out Monday morning.

 

Since they haven't the resources to tackle everything I have stated that his sensory problems are the most pressing concern so the Therapist is going to bring a sensory questionaire with her to try and tease out all the pertinent issues.

 

It has been a long wait, some years, and the amount of time they can devote to each patient is limited, usually limited only to an assessment and guidance on what things you can do to help, so the Therapist has asked me to think carefully about any questions I might have before she comes. She has agreed to talk to the school about his sensory issues and try and make them understand it is a very real disability and the effect that it has on his learning.

 

Has anyone had a similar assessment for their child (A is 14) and if so can you advise on what sort of things I should be thinking about asking?

 

I know that both A and I want to understand more about the theories of what causes his sensory problems and techniques to help him cope with them. We want to know how common such problems are because at the moment he feels he's a freak and that he's going insane but what other questions could I ask to help us gain an understanding on how to enable A to live as normal a life as possible.

[phasmid]

We had an OT assesment carried out on phas jr (we had to shout long and hard to get it). The biggest single issue for us was washing. We were moved ito a partially disabled adapted house a few years ago. We only had a shower which, he loathed! The battles we used to have to get him in are legendary to our neighbours - they all knew when he was going to have a shower well in advance!

 

So, we asked for a bath, landlords said 'no', we said 'OT?', they said 'Not us - social services', social services said 'mental health', mental health said 'OT' so we said:

 

"Somebody do SOMETHING - NOW!!!

 

So the OT came out with all the paperwork and assessed him, then we said - 'While your here, we need to have OUR needs assessed as well as carers! ' Took her back a bit, but she did it. The next thing we know ahe was back out with the council. 3 months later we have a bath (for phas jr) with an over bath shower fitted for us! His first bath was bliss - he was in there for four hours!!! Teenage mode has kicked in since and he's become allergic to soap and water.

 

What I am trying to get at is ask for ANYTHING you can think of...and I mean anything from baths and beds to things for school. If they cannot fund it it doesn't mean he doesn't need it! Lack of funds is not grounds for not assessing how 'x' or 'y' will improve his (and yours - do not forget about you!) quaility of life. Doesn't matter how far fetched it might seem to ask for a hot tub, for example, if it would help him to relax and unwind...ask for one!

[Zemanski]

a trampoline with safety net for balance and coordination and for desensitising physical play

 

sorry, not much help but it's given me an idea - our trampoline really needs new pads and the stitching is beginning to go and it is Com's sole source of physical exercise and one of the few things he uses to socialise and play.

 

Zemanski

[witsend]

Hi Tez, don't worry too much. My son had an OT ass recently after a very long wait too and this included the sensory questionairre. If a lot of your concerns are to do with sensory issues then this questionairre will probably help you to highlight what you most need help/guidance with, it is quite a long detailed one. Hopefully the OT should go through the results with you and also be able to highlight problem areas with you. The type of interventions needed will be indicated by the results and the OT will tell you about them.

In the meantime I'd just write a list of all the things you're concerned about but try to make them practical and concrete (eg he can't tie shoelaces, he can't use a knife and fork rather than he struggles with fine motor skills), that way you will hopefully actually get the help you need.

We were also told OT's time is limited and they could only offer guidance for interventions at home etc rather than ongoing therapy, but now my son has been seen the OT's told us we can ring her anytime and my son is to commence on a 10 week strength programme, Ot has also been into school, so I think once your in the system you have increased access to it.

Good Luck - Witsend.

[Tez]

Well, we had the OT assessment today and she was really nice. A was having a difficult day. She wanted him to make us so coffees and for me to show how I would have to help him, whilst she watched. He didn't refuse, he just wrapped his big fleecy blanket around him and laid down on the floor covering his head with it. I was a bit embarassed as he is 14 but she understood. She asked him if he would prefer it if she just went away and left him alone, to which he just shrugged. She asked if he could explain exactly what he was finding so difficult, at which point he agreed to try.

 

To be fair he was having a good day dexterity wise and he made the coffees relatively easily. I did have to warn him about the steam, I did have to advise him on how to hold the spoon to gain control and I did have to tell him to empty some water out of the kettle so he could handle it but otherwise he coped fine, which is unusual.

 

We went through a sensory questionaire which she said she would have to analyse but she said that there was definitely something funny going on there. She asked me and A to fill the questionaire in together and discuss it as we did so because she said the discussion was as important as the answers.

 

When she left she said she didn't know if she would want to see A again, it wasn't normal but she thought there might be a need. She said that she would phone me in a few days to discuss things and that I would be getting a full report.

 

She also said that she would write a report giving expert advice for A's statutory assessment since it was obvious that the school had no idea what it was dealing with or how to handle it appropriately.

 

On the whole I thought it went well, but I have learnt to wait to see the evidence (i.e. the report) before I count my chickens.

Edited October 10, 2005 by Tez

[witsend]

Good luck with it Tez.