Here are some suggested organisations that offer expert advice on SN.
Sensory processing disorder(11 Posts)
This is my first thread and I'd like to ask what you chaps think. It's a long waffle so you might need a cuppa or something stronger!!
My daughter will be 13 in December and appears to have a lot of difficulties. We are under CAMHS and on the waiting list for ADOS. they say my daughter is complex. She was referred to OT as concerns re dyspraxia. They did the m-abc and she scored on the 5th centile for both ball skills and manipulation but on the 50th for balance (mainly due to being good on the dynamic balance). Her overall score was on the 9th centile. OT have discharged from their service but has referred her to paediatrician as wants to rule out prader willi as has some similarities. They also said that she's complex. She has severe flat feet and tight calves so has insoles and has been referred to physio. She's also on waiting list for feeding team as she doesn't chew her food adequately. She also has a lot of Aspergers behaviours and scored on all questions except 1 on the Gillberg test. She scores high on Conners questionnaires at both home and school but CAMHS don't think she has ADHD. CAMHS worker used to be a sensory trained OT so he did a sensory profile as no sensory service available in this area. He has said that if he could diagnose he would diagnose her with SPD. Due to no services in this area we have looked to private but that is an hours drive away.
We went to visit the private facility for an informal chat. They have said that Molly is complex and needs intensive therapy. I asked about a sensory assessment so we can know her needs and also advise school etc but they are saying that an assessment will only confirm the difficulties that are already known and that she needs this intensive therapy on 25 to 30 hours over 5 to 6 days for them to find what is causing all her difficulties. Then they will give us a report to state all this. I'm still waiting on a price for this but their normal rate for therapy is £70 for 45 mins and £500 for an assessment. So on these rates we are looking at the best part of £3000!!
I want to help my daughter as much as I can as apart from her academic ability she is like a toddler in a teens body (even CAMHS said this) but I can't help wondering if what they are telling me is true. I'm really confused now.
Is this type of intervention beneficial and is it worth the high price tag?
Thanks for reading.
Hi - it sounds like a huge amount of therapy over 5 or 6 days. Not sure if the private facility is OT but if it is or is Physio I wouldnt have thought that it would take that long for an OT to identify strengths and weaknesses and to design a programme that could be used at home, unless there is a need to use special equipment. My Dt2 has sensory and auditory processing difficulties and is also regarded as somewhat complex. We paid £325 for an initial assessment and report. We visit once a month for an hour (£75) where he is reviewed and where applicable given some more advanced exercises. We do quite a lot at home but once shown by the OT we can do this easily. We bought some basic equipment like a therapy ball, wobble/balance boards etc
It is an OT as far as I know. It's this place http://www.tipltd.co.uk
which I've heard good things about. That's why I'm so confused
From the issues you have mentioned, some of these research papers may provide you some information to help you understand the conditions you have mentioned, some of which can overlap.
Systematic review of the clinical and genetic aspects of Prader-Willi syndrome
Identification and Evaluation of Children With Autism Spectrum Disorders
Diagnostic Criteria for 299.80: Asperger's Disorder
The history of attention deficit hyperactivity disorder
And the following research paper collections
Dyspraxia - Developmental Coordination Disorder
Sensory Processing Disorder
CiteULike Group Autism library
they may provide some explanations
I just wrote a long explanation about how therapy worked for my dd who is 11 but it has just been deleted. Basically as paranoid says our prices were similar. The OT wrote a report and then visited school to implement a programme to be incorporated into the day but also 15 mins of exercises twic a day. We had a one hour session each week in the sensory room at therapist practice. Now it is paid for in her statement and going to senior school with her.
We also had a home programme which consisted of four sessions of exercise a day. This may be swimming, cycling, trampoiling or other large sports. The second part of the programme was a series of exercises. We received a massive print out of different exercises under heading of areas that had to be worked we picked out say three from each area and worked on these and then a different three the next session. These are fund things that can be done in the house or garden, they may be froggy jumps, jumping over a hosepipe laid out in the garden, doing a wheelbarrow race. All her friends were happy to do these with her as we laid it out like a mini race course.
It worked really well but was time consuming. But it was easy to put into our day and we could still do it on hoildays.
As I was paying at this point the OT was going to make a programe for me to do with a personal trainer so that she could go to the next level of athletics, rather than paying the OT. But we have just had it all added into her statement so will have to come up with something with the OT that works now.
Here is the link to the OT service we used.
We were turned down for NHS OT twice, so we also went private for my DS (3.5 at the time). It cost us £500 for the initial assessment then £65 for the further 4 visits that she did.
To be honest for DS it was the best thing we have done. Our OT devised a 'sensory diet' for him. This cost more to put into place - trampoline, giant bilibo thing, weighted blanket and weighted vest. However DS is miles better than he was pre-assessment. He sits better at preschool because they introduced the same programme. He doesnt spend hours running around crashing into things because he gets the sensory input in other ways.
Thanks for your replies. The service that you guys received is what I was looking for. An assessment and advice for home and school with therapy a couple of times a month due to the long commute but they are trying to get us to have therapy before the report and 30 hours worth over a week. Think I need to do more research x
Just a question sazale. We had OT do the SITP test on the NHS. It is available in our area. I know that it is relatively expensive to perform on the NHS - but it is available. If your own pct cannot provide the service, have you badgered your pct/gp CAMHS - basically anyone that can refer you to another pct that has this facility? The CAMHS worker sounds like he might be a good place to get support to push your trust. Use PALS to get answers from the pct as well.
If a sensory profile is required, the pct should organise regardless of their proficiencies.
Our assessment was also done at home, although we did have the choice of it being done at school.
Whoops - anagram is wrong - sensory integration and praxis test . It is a very full scoping test on elements of sensory processing, dyspraxia etc etc. From there they can give you a very tailored sensory diet.
It seems senseless that one pct can offer free - when another won't offer and you have to pay.
If you are given an excuse of no pct offering due to expense, disagree, pm me and i will give you details of our pct who has done it free!
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