sensory issues or not?

[elliejjtiny]

DS2 (almost 5 and in reception) has Ehlers Danlos Syndrome, which in theory is a physical disability but in reality also causes other problems. He is on school action at school which doesn't seem to mean much. He can walk very short distances but uses a wheelchair going to and from school and sometimes in school as well. He was assessed by the OT before starting school and they got ramps, handrails, toilet step etc. On school trips he gets one to one from a TA but in school he gets nothing.

DS2 has only just started full time school. He took a long time to settle in and still isn't keen. He said he didn't like the noise at school so the senco got him some ear defenders. Last week the teacher noticed that he seems quite happy with noise when he's the one making it eg if he presses the button on the hand dryer. So she has told me that she thinks he is mostly attention seeking and she will be less tolerant of his behaviour in future.

On friday last week I was in assembly to watch him get a certificate and he cried when he came into the hall and refused to sit on the bench whith the other children who have mobility or behaviour disabilities (ended up sitting on the TA's lap). When I asked the teacher about it she said he doesn't normally but probably did it as a guilt trip for me because I was there.

I know he tries it on a bit (it's surprising how often he suddenly gets tired when tidying up is mentioned ). I always give him a non tiring job to do when he does that though. The teacher always says he's been fine when I ask and I've often thought they are just humouring the insane overprotective mother and don't think he has a disability at all. Then his DLA renewal was due and I read the report from the senco which made him sound more disabled than the stuff I wrote on the form.

So now I'm confused. Is he fine, or not? Does he have sensory issues or not? He has an IEP which seems to be focussed on the joining in things but other than that I don't seem to get much feedback. Sometimes I ask DS1 but as he is only 6 his answers aren't very reliable.

[district12]

Hi, my 2 sons also have Ehlers Danlos syndrome, though nowhere near as severe as you describe your ds.

DS2 however has severe dyspraxia and sensory processing disorder.
My ds2 orthopaedic surgeon has said before that dyspraxia is common in children with hypermobility syndromes.

I also am led to believe that spd and dyspraxia together is quite common so maybe there could be a link to the sensory issues you are mentioning. hope this helps.

[district12]

Sorry , also forgot to say that my ds also does not like loud noise , but is very noisy himself

[auntevil]

What I've found in schools is that there is a very black and white opinion on sensory issues. They believe either that you are hypo sensitive or hyper sensitive.
There is very little understanding of the concept that you can have both and that it can vary from day to day as to the extent of the reaction.
My DS puts Brian Blessed to shame in the volume stakes, and has the tv etc up way too loud, always turning it down and is usually very hypo sensitive. Cannot stand his brother talking in the next room at a really normal level as it 'puts him off' .
There is no standard response to sensory issues, the teacher needs to be aware of this.

[Ineedmorepatience]

I am having similar with Dd3, she has hypermobility in all her joints and also has sensory issues. I feel like I need to know what is sensory and what is hypermobility.

I have just bumped my thread from last night.

Dd3 asked me this week why she cant stand loud noises when she is noisy herself

[Ineedmorepatience]

For what its worth I think the teachers are being unkind and are lacking awareness when they try to foist his issues on to you.

Dd3 behaves completely differently when I am around and I am sure it is because I can read her and she gives me looks and lets me know if she is happy or not. But the teachers only get the fixed social smile and if they ask her if she is OK she just says "Fine"

[elliejjtiny]

Thanks everyone. I have to admit I know hardly anything about sensory issues apart from that most of the children at school seem to wear ear defenders if they have sensory issues (I'm probably making a big generalisation though).

I've often wondered about dyspraxia and DS2. In fact when the paed asked me what I thought when she first saw him I said I thought he had very severe dyspraxia, even though he was only 5 months old at the time. I have dyspraxia and DH has AS which I know increases his chances of getting it. Ironically he is the least accident prone of all my children as he walks so slowly and carefully. I could wallpaper the living room with all DS1's accident slips from school and DS3 seems to spend more time flat on his face than upright.

I'm seeing the HV next week and I'll ask her if she can refer DS2 for a sensory assessment. She is one of those professionals who you need to give them something to do or they will get a bee in their bonnet about problems that don't exist so that will hopefully make her feel needed and distract her from constantly measuring DS3, who is probably just meant to be short like his mum! I'll have a look at the SENCOP as well, I knew it wasn't right that the dwp think that he needs loads of extra help at home (he gets middle care and high mobility dla) but the education people think the school can manage without.

Glad to know it's normal to like making a noise but not like other people's noise. I'm not even sure whether it's the noise that's the problem or something else, like the crowds that come with the noise. He likes to wear his ear defenders and sit humming to himself and I get the impression that he'd prefer school if it was just him and a couple of his favourite TA's!

I've been dropping him off at school and he's done the howling, charging down the corridor in his wheelchair, clinging to my leg, the doorframe etc. I did all the right things, smiled, encouraged, handed him over to his favourite TA kicking and screaming and made a quick exit, before crying at home.

In the end we decided that DH would drop him off at breakfast club with DS1 on the way to work. He helps to set up for breakfast while the other children run around and ends up using a lot less energy in the extra 45 mins at school than he did in his daily strop. He mostly goes in ok with DH which is why the teacher thinks the crying is for my benefit. I think it's the gradual start to the school day that helps. He starts the school day scoffing toast and jam with DS1 instead of going straight in to phonics, which he struggles with and doesn't like.

[elliejjtiny]

Just thought I'd add that I happened to see the senco when I was picking up DS1 and DS2 so I asked her about the sensory issues. She said she had no idea but she's going to sort out a sensory assessment.

[tigersmummy]

Nothing helpful to add unfortunately but watching with interest as DS has sensory issues I'm sure.

[iAutism]

Important to have one done and focus on area of concern...

www.meetup.com/AutismUK/files/

Winnie Dunn Sensory Profile Questionnaire Sample

Useful for to focus on areas of sensory difficulties.

Looks daunting look at pages 1-9
A = Always, F = Frequently, O = Occasionally, S = Seldom, N = Never

*Last Page - More scoring in the Definite Difference (right of scale) means areas as having greater sensory difficulties

Rgs

Autism Resource Centre
www.meetup.com/AutismUK/

[iAutism]

Sorry looks daunting but its not that difficult to do :)