OT - now they're all at it

[appropriatelytrained]

Things have been calm and quiet of late. DS is home educated. We've found a lovely, progressive, small school and are getting his statement transferred.

Head has been great.

The LA stress has faded away - momentarily.

The one decent 'expert' we've dealt with locally is the OT. However, she started to get a bit arsey around Tribunal even though we weren't calling her and I made great efforts to agree her evidence.

She didn't however, pick up on DS's Hypermobility Syndrome and didn't test him for gross motor skill problems at all. When I raised this, she agreed to do the Bruinix for gross motor. She dismissed DS's tiredness as 'behavioural'.

We fought our way to an NHS referral at GT Ormond St who confirmed HMS and he is marked as a priority on a waiting list for in-patient treatment.

She saw DS in July to finish gross motor skill tests. 5 months later I get the report. She clearly has been talking to the LA as she knew all about us leaving school and our plans so I had to ask her not to disclose the report before I get sight of uit.

Good job I did. He has scored lots of below average and well below average but although she concedes he has difficulties, she tried to close over the results by saying he was so dramatically playing up, she couldn't score him properly.

Seriously . She never said anything to me - sitting in the bleeding room.

She did however say things like ''stop being silly, run sensibly" after seeing his very odd and laboured run. I had to point out that is his run. I could see she wasn't getting the test results she wanted as she kept on saying 'this is not what I was expecting'.

Not once did she say, he's being too silly for me to get accurate results. This is all retrospective, when she results she didn't want.

I have written and told her this but I am so angry.

Yes, and preferably without the enormous juicy spots that have recently appeared on my face!! Doc now thinks I have a thyroid dysfunction and my hormones are all too pot.

I was handling that well until I got this report and then you get the old familiar rage....!

Must admit that one of the things i always like to have in any report is a comment like 'fully participated' , 'tried really hard' etc - because that way they can't back track and cover their behinds by saying that the test result isn't indicative.
I don't know what the Bruinix test is, but my DS did the SIPT in the summer and it was marked independently and the OTs don't sway the results as there are photographic records and physical records as part of this.

Hi - my son has EDS - I know how you feel - we Home Ed too, school failed my 7 year old in a big way. Our local OT and Physio asked me to google the condition and show them what I found out - great!
We get our OT at GOSH, and just carry out the instruction at home. We say our son runs like Cpt Jack Sparrow - all floppy with arms all over the place - it's part of the condition for heavens sake!
Many local physio/OT's [we have found] seem to 'get the hump' that we have a DX from GOSH and that we end up knowing more about our childrens condition and how it affects their whole lives than they do!
When you spend your life being assessed and your every move recorded, is it any wonder that sometimes they have had enough and refuse to cooperate at times.
Call GOSH and speak to them, they may be more helpful, you may find that you could get a report from their OT's which will be far more valuable it sounds!

Thanks. Yes, that is what I was hoping.. That we would get something from GOSH when we go. DS is not yet back in school so there's no urgent rush.

I think as this woman is head of the dept, that she doesn't like the fact that she missed stuff.

She has acknowledged most of his difficulties but I'm not convinced she knows what to do with them and I think she is being dismissive of his responses as she doesn't understand why he didn't respond as expected.

The OT's at GOSH are very good, and have given us a great deal of help and support. The thing is, if they [the local OT's] don't know enough, but are too proud to ask/say ,it's your child who ends up being the training tool.
We need finger braces, special seating, pencil grips, writing slopes and voice activated computer programs, and if the reccomendation comes form GOSH there is no higher, and it is more likely to be provided and added to a Statement. Ego's are a dangerous thing, and it doesn't give you a huge amount of faith in handing your childs care over to someone who doesn't or doesn't want to understand. I don't blame you at being angry - you're in good company! xx

Thanks, checking my emails, I can see that, back in June 2010, after this woman's first report, I asked her to comment on DS's gross motor skills.

It took a year for her to do the testing and now she comes back with this.

Don't get me wrong, she has had to conclude that he has real problems but I really feel that she has failed him as this report comes two years after we first saw her and this recognition of problems with gross motor skills is very late in the day - and also part undermined by her excuses for the very low results.

Amazingly, it seems, his fine motor skills have improved. I'm not convinced.

I knew she was going to get difficult though as she has ignored us since seeing us in July until I chased her several times. I feel this report is now also potentially out of date.

We have an annual review in Jan. I have asked her to correct it. I suppose all I can do is wait for the Gt Ormond St app and be appropriately dismissive about the limits to her knowledge etc even if she can't admit them.

It is a shame as she was so helpful to start with. I feel she has been turned against us by the process. You just can't trust any of them.

Chase GOSH for the appt, and tell her you are doing so. I have found that most of our assessments apart from diagnosis are organic, changing with time, and not allways for the better.
We have just had an AR for SSEN, and I have requested it be 'interim' until new reports are in as we have about 6 assessments due in the next 3 months. It just has to be right, and if the local teams can't get past the Dx then they just have to wait until the people we trust come forward with the correct treatment and maintance programs for his condition.
You don't need them to be your friends, I've decided, the people who count are the ones who understand and are prepared to support you as a family. Good luck xx

Thanks. You are right. We need the input from people who understand for the AR.

I rang them and they said Jan/Feb for a date but couldn't be more specific than that. Any suggestions? Should I write and ask them for a date, explaining the circumstances i.e. that he is returning to school for the first time since July and having his statement reviewed?

After the inpatient course, are they able to set out a programme? They always seemed to be reluctant to do anything to do with school when we saw them privately.

We have done the 2 week course once, and are about to do another in Jan. Yes, they will send you home with a program to continue with in order to maintain and increase muscle strength, fine and gross motor.
I would write to them and explain - did you see the Consultant and Physio - if so copy in to both. We have been there for several years and when my son was at school they were very pro-active with reports and information - only the school didn't want to know and it was them who didn't return calls or take onboard advice.
The program is very busy and it runs all year, but do not give up. The course itself is tough and if you are Home Ed-ing it would be best to continue until at least afterwards as it is very tiring for the child - there is a lot to take on, and the physical side is huge. We came away with my son on 5lb weights - he slipped back to 4, but needs to increase to nearer to 8lb to get the strength he needs.
Be strong and you will get past this, it's just such a fight all the time. Nearly time for a glass of wine though isn't it?...... please! x

Leonie - thanks! Do things improve when you start taking the tablets? Its irreversible isn't it?

I thought I was just getting old (menstrual cycle all over the place - sorry if TMI- and a bit of extra weight, tiredness etc) but it seems its almost certainly hydrothyroidism.

Can it be linked to stress? I read something on wiki suggesting that.

mycarscallednev - thanks so much for this. We saw a doc and physio. It looks like it would be a good idea to get the details so that this can be fitted in with his transition back to school if possible.

DS is doing well at home and I do fear for his ability to cope with regular attendance at school. Fortunately, we now have an understanding head who is happy to work around DS's needs.

It's such a worry and so few people really understand these children. The doctors also seem concerned about hyperlordosis. Do you have any experience of that?

Just thought the timing was particularly great - most stressful year ever!

Hi when we do go back to school it will be flexi-schooling until I am sure that he can cope - the more tired he gets the more frequent the subluxes are. He has a spinal problem in that he was born with spina-biffida occulta and the lower back is fused. He gets back pain frequently and it is thought that this isn't helped by the range of mobility in his hips,knees and feet. His chest has the concave shape that is common in EDS.
I am making sure that all of this is rewritten into his SSEN - they hate me for it - but tough!
It affects the childs self esteem, and it's not helped, as you say by the lack of understanding and the want to learn.
I also intend to ensure that whoever looks after him at school has spent time with him to try to understand the cues to when he has done too much and needs to rest. It's not easy is it? Before I joined MN and the EDS online support group I felt even more alone. Thank you to everyone who cares enough to help x

I know. I don't know how I would have coped without this board. People just understand and appreciate how tough it is.

We live in a very strange little isolated world of SEN and others do not understand how tough it can be to secure even the most basic of provision.

It sounds like your son has some tough difficulties. Are you home edding at the moment?

Nothing useful to add but sympathies.

At the end of the day, all of them are paid by the LA and will be more sympathetic to the LA's position.

About your appointment - can you call them and say you are available to take any cancellations - if you are? I have found that has moved me up the queue sometimes.

Thanks trying. It's a two week in patient course at Gt Ormond st which is why it takes so long to get a slot. But that is a good idea - I will add the bit about cancellations to my letter. Thanks

Yes, Home Ed-ing at the moment, and not planning on returning to school for some time, as we have too much going on. We have been to Genetics at Northwick Park and are at St Thomas' for his bowel/bladder, and until we get some more info on all of the findings I won't even think of sending him back!
The waiting list at GOSH is always a nightmare, when did you see them last?
Are they saying that they will tell you a date in Jan/Feb for later in the year - or that will be when they expect to see you for the Rehab? Someone once said to me that 'the sqeaking door gets oiled first' and that's the basis I use for getting things sorted now we have an SEN child!!

I can understand your approach!

We saw GOSH at end of Oct and the guy I spoke to yesterday said our Rehab date should be January but possibly February. I will write.

It is hard enough when the LA/NHS think they are offering a service locally and give you a limited/substandard one as they tend to do with autism.

But when there is no service at all and thus no one really understands what you're talking about, it is very difficult to ensure a child''s needs are met.

Do you get any support/assistance while he is at home?

No, nothing, apart from the support of GOSH. We don't get OT, because we Home Ed - we have to go to GOSH for this [although the site 'edyourself' has been invaluable for help with this], if you Home Ed an SEN child where we live I'm sure they just think 'thats one less to pay for and look after in school'.

Yes, it's the same here. It's amazing how the NHS tries to drop you too when there is no clinical justification for withdrawing services.

It is disgraceful that services hinge on the education system like this.

I'm surprised no one on MN has picked this up as a campaign - maybe because all of those dealing with it don't have any time - it's taken up doing the job of the LA and chasing the NHS!!