OT Report just arrived - confused

[moosemama]

Hi

Ds had his OT assessment last week and we've just received the report this afternoon.

The thing that's confusing me is that the results seem well, 'spiky' to say the least.

He scored:

25th Percentile for manual dexterity
5th Percentile for aiming and catching
37th Percentile for balance

Which places him on the 16th Percentile overall.

He was also found to have significant hypotonia, particularly bad with regards to his core/trunk strength.

Some of it makes sense. I can see that as he enjoys lego, has recently learned to touch type (lots of practising) and loves his Nintendo DSi his fine motor skills are exercised regularly and have improved as a result. We bought him a wobble board at the end of the Summer Term 2010 and he spent a lot of time on it over the summer, setting himself targets (its electronic and beginner level though so not that challenging). So I can see how he could have improved to some degree there as well, since he was referred for assessment 12 months ago.

I have seen several papers on the net that say that the 16th centile of the M ABC-2 test should be considered borderline for the amber/at-risk category for dcd, but having spoken to the OT, she says 15 is the upper (therefore borderline) result for the amber category and he would be considered to be at the very bottom of the 'normal for age' group. Which basically means he doesn't qualify for any help. Now why does that make me suspicious.

On the one hand the report says he isn't able to sit at a desk without slumping and attempting to hold himself up on his arms, yet on the other it says he has good balance.

I can't quite get my head around how a child with significant hypotonia, particularly in relation to core strength and posture, can have scored so high for balance. (We're talking about a child that never stands when he can sit and never sits when he can lie down here.)

Quote: "was unable to maintain a stable upright posture, due to significanly low muscle tone"

Surely the two things directly contradict each other, as, as I understand it (and I could well be wrong) we use our core strength to hold our position and pull ourselves back into line when we are trying to balance.

Lastly, he scored very badly for throwing and catching. He particularly struggled with catching a ball that was bounced off the wall and was unable to judge the force and distance of the returning ball, so ended up catching it with his body rather than his hands. He also struggled to judge the distance to a target for throwing beanbags.

Could this be due to poor visual motor co-ordination. We already know he has very poor convergence (despite better than 20/20 vision) and visual motor issues were highlighted as a problem on his WISC IV results. The next assessment he has will be a behavioural optometry assessment, so I suppose we might get some more answers there.

I have just spoken to the OT who did the assessment (who by the way is lovely and very helpful) and asked for one thing that we discussed to be added, but other than that, I am happy with the report in general and particularly the recommendations she's made to the school, as many/most of them back-up recommendations made by the EPs and Inclusion Service.

I do wonder though how much pressure there sometimes is on them to score on the borderline - just above the at-risk category rather than just below. Especially when the letter actually states that they are an oversubscribed service that can't offer support to children that fall outside that group.

I did mention to her that I was surprised at the result, given that he is extremely clumsy and accident prone and struggles with a lot of day to day tasks relating to both fine and gross motor skills but she really didn't answer me on that, other than to say that she was pleased that we are having a visual assessment done and she hoped it would shed more light on his difficulties.

Not sure what I'm asking here really, other than perhaps am I wrong to be suspicious of his score, when our PCT considers his score to be above the borderline and others would consider him in the lower category?

Also, how unusual is it to get such a huge discrepancy between different sections of the test?

and, does anyone know whether its possible to have extremely poor core strenght but still have good balance?

By the way, I wasn't expecting him to get any support really, so am not surprised that he won't be getting any. I am just trying to get my head around the report and what it means in real terms regarding ds's difficulties.

Any help, advice would be much appreciated.

On the one hand the report says he isn't able to sit at a desk without slumping and attempting to hold himself up on his arms, yet on the other it says he has good balance.

I'm no expert - but I think he can't sit without slumping because of a lack of core strength, not because a lack of balance.

I am surprised that they are not going to give him any support at all.

My DS's scores were 37th, 50th, 25th so total 37th percentile. He is only 5 so his tests were from the 3-6 age range whereas your son would have been 7-10 so slightly different tests.

On those scores, DS has been given exercises to do with the TA at school, FIZZY, recommended caring cutlery, writing slope, foot rest, long loop scissors, movement breaks at school, increased use of the move and sit cushion and he is to change seats in class.

This is without any sensory evaluation - I want this sorted as major sensory issues as well. I am hoping to go for a private OT assessment as well just to be sure as well as the behavioural optometrist.

I also thought it was strange that the DCD diagnosis would be based soley on the Movement ABC test whereas the Dyspraxia Foundation website has so many other symptoms which he has.

Did they also do the Visual Motor Integration tests? DS was on the 4th percentile for that so some of the recommendations were for that - ie caring cutlery and long loop scissors

Hi Indigo

Yes it is because of the core strength, but don't we rely on core strength in order to pull ourselves constantly into the vertical position for balance purposes? Our ears/vestibular system give us the feedback that we are unbalanced and we use our core strength to right ourselves. So I don't understand how he can have decent balance, but almost no core strength.

Just found out via google that its called 'dynamic postural control'. Lots of stuff out there from research studies to fitness advice all saying the same thing - for good balance, you need good core strength.

Honestly, my child is a constant contradiction in terms!

However, on the bright side....

Core strength can be improved with exercises

and his vestibular system can be improved with either retained reflexes therapy or sensory integration therapy.....

I would politely (at first) push the OT for some further input here and at the very least a review in 6-12 months. We had similar for DD#1 when she scored 6% overall on her tests but especially poorly on fine motor skills (2%) and then the conclusion was that she would be signed off, despite the fact she was only 1% over the "definate problem" zone as they defined it and certainly well into the "should be carefully monitored as may well be problems" zone. I wrote to the OT and thanked for the report but then suggested I was very unhappy with the lack of input and whilst I appreciated they were probably overstretched it should not be a reason for my daughter to be left without help of some sort. I was contacted back very quickly with a bit of a grovelling apology and she got a block of therapy time from them and has had two reviews since. She has now been signed off but I think that is in part because our OT moved dept, but we were told to re-refer if we felt we needed more help. Actually I am happy with how things are going for now so despite being a little at the way in which we were suddenly discharged it doesn't matter to much to us just now.
Sometimes they do need a kick up the bum, so to speak and may be more forthcoming with help.

Ben10, they did make some good recommendations, but of course the school is under no obligation to implement them. We wereadvised to buy him caring cutlery - that arrived yesterday, they have made recommendations with regards to movement breaks, continue to use the move-n-sit cushion (he's had one since last October anyway) continued use of the alphasmart for large pieces of writing and that he shouldn't be required to undertake cursive or joined writing. Nothing that the EP and Inclusion Team hadn't already recommended, but good to have it all reinforced. They also recommended that he should do the BEAM programme at school, but I happen to know that while they have the equipment in school, they don't have anyone who knows how to use it.

What is FIZZY?

They didn't do any visual motor integration tests. We have to pay and go private for that and its on our list, as we have already had VMI issues raised by an optician and the EP.

We did fill out the sensory profile questionnaire - again! It was exactly the same one we did for his ASD assessment and although they have had a stab at interpreting it, its clear that there's very little sensory difficulty awareness involved in that. To be honest I was expecting that as its nigh on impossible to find a sensory trained NHS OT.

Indigo, yes that's how I felt - at least we can do something to help him with these problems. He already has private pilates lessons and is hopefully starting parent and child tae kwon do with his Dad shortly (the OT recommended a martial art involving balance exercises and luckily we had already made the enquiry about this).

Beautiful girls, thanks for replying. I got the distinct impression that there would be literally no point in pushing for any more input - although they did say they can be contacted by phone for advice at any time. To be honest, as these are things we can help him with ourselves to some extent, I would rather the help went to children with worse problems than ds's. I'm really just trying to get my head around it all and pinpoint where the main problems are so we can work on those first.

Its frustrating that the school is unlikely to do much to help, especially as they're the ones that struggle with his inability to sit at a desk for more than a few minutes at a time.

I suppose if I'm honest, I'm also mulling over a private OT assessment as a second opinion, as I don't see ds reflected in some of the scores.

I'll be getting myself a rep if I push too much - I've literally just made a phone call to patient liaison to at the hospital to complain about the consultant that I saw with ds2 yesterday and ask to be moved to another consultant's list.

Is the pilates helping?

Martial arts will be brilliant - my DS refuses to go because he doesn't like the karate suits :(

Swimming is of course also good.... (If you can teach him)

Highly recommend those move-n-sit cushions for school.

I think that the help and support that you receive is just a postcode lottery. Many PCTs don't have budgets for specialist therapies. Many people are left to do their own physio and OT at home - or fund therapists themselves.
Moosemama - who is co-ordinating all the appointments? Is it going back to a paediatrician? Is this for a dx or for SA? I suppose i'm just wondering if it is a report that will assist in a dx - where a dx might initiate more support, or an assessment for the purpose of education - and what strategies they should be supporting.

Sorry Moosemama - it took so long between starting and finishing what i had written that it's moved on and you've answered loads.
Sometimes you have to try hard to find activities to do that will strengthen the core. My DS is dyspraxic and suffers from sensitivity issues. He will easily give up activities that he finds difficult - such as martial arts. If there appears to be too much difference between him and his peers we have emotional meltdown.
I just get fed up with constantly funding activities, equipment etc.

Trampolining club is great for us as it is 1:1 whilst he is on the trampoline and is very good for core stability.

The report says BEAM/FIZZY so I don't know whether they are just different versions of the same programme. At DS's school, a TA is trained to conduct FIZZY and he has a 1:2 20 minute session each week where he plays games to increase his fine and gross motor skills. ie playing subbuteo, pretend piano on the table etc. It does seem to have improved as he can at least touch his thumb to his forefinger when asked to!

Indigo, the jury's out on the pilates. The first couple of lessons were a complete disaster. The low muscle tone meant he couldn't hold a position long enough to work the muscles, but we do think its improving. It was quite an eye-opener watching him attempt to get into some of the poses, the poor teacher would come and help him arrange himself and get set up, then as soon as he took a step back ds collapsed like a wobbly jelly! Its also hard for him to concentrate for long enough and he gets tired really fast doing it as well. We are keeping on with it though, ever hopeful.

Swimming has been a disaster - sensory stuff around water on his face and an inability to hold himself up in the water has really held him back. He's had seven months of lessons with very little progress really.

Auntevil, he was referred to OT a year ago, while we were still waiting for his ASD assessment, because he was struggling at school and had big self-care problems at home. Then at his assessment, they noted obvious coordination issues and the OT recommended a full assessment. Fortunately, he had just reached the top of the waiting list and was seen last week - a month after his AS dx. The AS dx report hasn't arrived with us yet but as both depts report to the same Paed, I think he will have been waiting for this report before he finalises the dx report. We were told that the dx will come with full reports from every professional that's been involved along the way.

Next stop SA I think. We've had some really great advice a recommendations from various professionals that all seem to agree on the support he needs, so I'm hoping some of that will work in his favour. We have an IEP review just after half term and I'm going to press the school to support our application.

He used to do judo after school, but they didn't get enough students for it to continue. I also had to speak to the instructor as he was calling him 'space cadet', mocking him for not 'paying attention' and calling him 'Tiny Tim' and making jokes about how small he was for his age. Despite all that ds actually loved the judo itself, so I'm hopeful for the Tae Kwon Do, especially as he will be in the same class as his Dad.

Ben10, we only have a little trampoline - its another thing on the ever growing list. There is a trampolining club, but its before school, which just isn't doable with ds.

As far as I understand it, BEAM is a bit like a kiddy version of pilates. The OT did demonstrate a bit to us at the assessment. Basically they do very simple slow movements that work on holding body position and balance and hopefully improve core strength. Apparently its recommended for all children and some schools do it regularly before lessons every day, as it really helps with posture and sitting at a desk etc.

Sounds like BEAM is gross motor and FIZZY might be fine motor then? Ds's fine motor improved greatly when he got interested in lego and because he had to learn to touch type so he could use the Alphasmart. He still has handwriting issues, but we've found out via this assessment that its due to his wrists and arms rather than his fine motor control.