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Sensory Integration/Processing Disorder - PLEASE help - lots of questions!

33 replies

galen · 02/12/2008 19:23

Hi! I am new here and am hoping to get some advice. Sorry if this has been asked before - I did try searching but got totally overwhelmed.
I am in need of advice regarding my 4 yr old. We are really struggling with her.We have a large family (and no her problems are NOT due to having a lot of sibllings so please don't suggest that as others have!) - she is no.4 out of 6 children, and while I really dont "compare" the children as such - she is definately "different" to the others. I am well used to dealing with toddler tantrums/preschool behaiour difficulties but DD's behaviour goes way beyind that. I was initially thinkink maybe ASD BUT she does show empathy - sometimes - can play imaginatively, and seems to make friends at nursery ( although due to house move she has only been there 1/2 a term so a bit early to say how that will pan out!) And then after eading around I discoverd Sensory Integration/Processing Disorder and it fits DD EXACTLY!!
I will try to be brief but some of the things she does include - seeming not to know where a sound is coming from (eg if I talk to her and she can't see me she spins around and round saying where are you) , dislke of noises ( eg flushing toilet) - covers ears, doesn't seem to like physical contact such as hugging, insensitivity to pain - didn't flinch AT ALL recently when she had jabs, clumsy - walks into things all the time ( we had her eyesight checked because of this but her eyes are fine) poor handwriting/fine motor skills, really messy eater, HATES all playground rides such as round - about, see saw etc... unless done REALLY slowly and gently, often seems to just not "get it" when you say something to her - although she can repeat back what you said, wont wear what she calls "floppy trousers".....and so on
Her behaviour is really challenging at home. She has total meltdowns ALL THE TIME, she is aggressive and rough towards her siblings, she is often exceptioally defiant. We have tried countless approaches and discipline techniques with her to no avail.
I am now at the point of taking her to the GP for a referral. I would love to hear anyone elses experiences with htis. From what I have read this is a somewhat controversial diagnosis. How likely am I that I will get this properly assessed and diagnosed if appraopriate? Or am I likely to get fobbed off? Is there actually any help available if I do get her diagnosed?
I would love to hear any experiances or point me in the direction of any info PLEASE. I feel SO sad for DD. It seems all she evr gets is into trouble, our relationship is suffering and if there are things I can do to help her I so desperately want to know.
Thanks.
Louise

OP posts:
feelingbitbetter · 02/12/2008 19:34

Hello and welcome!Can't help I'm afraid, but one thing I can do is assure you that no-one here will apportion blame to your DDs family life. From what I've read of others' threads - that does seem to happen a lot . Best of Luck xx

siblingrivalry · 02/12/2008 20:00

Hi
My dd (7) has recently been diagnosed with SPD. A lot of what you said about your dd sounds very familiar. I was in exactly your position a while ago -I knew something wasn't 'right'. Please trust your instincts - as her mother, you see everything that goes on and I think you are right to be questioning your dd's reactions/behaviour if it seems unusual.

Anyway, a wonderful Occupational Therapist assessed and diagnosed my dd and she is now on sensory 'diet' to help to desensitize her. There is a lot going on in the programme she is doing.
She is older than your dd and now has some emotional problems linked to her SPD and sees a child psychologist. With early intervention, though, there is a lot of help available.

I did a self-referral to our OT initially, then the GP became involved. It is different in all parts of the country, though, so maybe you could contact your GP or HV?

Good luck, let us know how you get on. Please don't worry that you will be 'judged' -our OT told me SPD is usually there at birth and nothing to do with parenting skills. A wonderful book on SPD is 'The out of sync child' by Carol Kranowitz. It is my 'bible'

Saker · 03/12/2008 09:53

If you can consider private OT there is a register here OTIP. Look for someone who specialises in sensory integration / children's OT.

You might find useful info at the Dyscovery Centre site.

whatreally · 03/12/2008 12:37

Hi,have been a lurker but felt compelled to reply. You could almost have been writing about my own 6 year old DD who has sensory processing disorder. Even down to the toilet flushing . Don't be fobbed off. Go to the GP armed with knowledge and fight your corner. I wish we have known sooner but it took a teacher to refer my DD to an OT. I just thought I had a beautiful, quirky but difficult child. Since we have seen the OT, we have had a sensory diet that I am hopeful will help (just started, too soon to tell yet). Melt downs a challenge but I feel like at least I know why now. Got more self help books on how to make your child happy than you could shake a stick at

ohmeohmy · 03/12/2008 12:50

DOn't let yourself be fobbed off. It is a real condition, difficulty is that each child with it has their own take on it so really needs proper assessment by OT who can then give you a programme of sensory diet stuff. Might well find your GP never heard of it so go armed with info. You can read and try things on your own. The Out of sync child has fun book has lots of games and stuff you can do, firm pressure massage can help, as can weighted blankets. Behaviour tends to improve when the sensory issues are being adequately addressed. If you are anywhere nr Lancaster great school there with on site physios & OT where my ds used to go. Be maginative about finding solutions..eg. found solution to ds acting up in school bus is an ipod so he can drown out the other kids with sound he does like. good luck

JillMLD · 21/12/2008 18:35

Hi
I felt I just had to post.
I only discovered SPD in the last few days in my desperate search for help with my son's toileting problems.

I am now wondering if he has SPD, I feel quite overwhelmed with everything I have read, there seem to be so many facets to it, I can't tell if I am just desperate to blame something for his toileting, or if he really has it, and even then I don't know what difference "knowing" would make. I see the tmessages and sites that talk about sensory activities/diets and I just think How would I fit that in with him being at school all day and the fact I have a preschooler and a baby as well ????
I would be interested in anyone else's opinion of my son's personality traits!

DS is now 5 1/2 and is in his second year of full time school. He's our first child and we also have 2 girls aged 4, and 15 months.

He was a really challenging baby, terrible sleeper at first, every transition was a nightmare. When I tried to stop breastfeeding he refused the bottle for agesk, sreaming for hours rather than drink from it. At a year we had the same problems again when we ditched the bottle in favour of a beaker. When he was moved from a cot to a bed at 2 1/2, he cried for a week for his cot back.

Even as recently as this year, moving from Reception to Year 1 was a mega deal causing lots of loss of sleep for us as he slept so badly and was extremely anxious for a while.

As a toddler those sort of movement and music classes were no fun, he just hated them all, he would never join in like the others, and at birthday parties he hates having to play party games though he has got a bit better at this this year.
The only class he ever enjoyed was swimming, he loved it, was a real water baby, but would cry and cry on the changing mat afterwards when getting changed. Even now he comes out of his class and can barely wlk for shivering with cold while other kids dont seem to even notice.
He doesnt want top play outside except in the summer otherwise its too cold. He complains about being cold when we walk to school even if he has about 5 layers on.
He has a bike which he can ride without stabilisers but its a constant confidence issue and he only does it if he thinkwe are holding him. He only ever lasts about 5 minutes at a time.

Every time Daddy went away on business (fairly often and usually for a week at a time) DS would sleep badly and rise early and generally be out of sorts while he was away. This has improved in the last year. Going on holidays is really stressful as he won't sleep, taking him to anyone's house for a sleepover really unsettles him and there is no way on earthe I could ever leave him with a babysitter he doesnt know. Even with a babysitter he knows he mucks them about and just cant settle at all.

He has a lot of strops, its like living with a teenager. He overreacts a lot to things not going his way, he cant bear for things to be in any way unfair, and if things dont go to his plan he freaks out completely. This includes things like not being able to get 2 bits of lego to join the way he wants, or not being able to do a bit of a computer game.

As a baby he started off ok on pureed food but then for months mealtimes were a complete battleground, at one stage everything had to be dipped in yoghurt, even down to sandwiches and fish fingers, we then had a period where for weeks he would only eat sandwiches, then weeks where he would only eat bits of pizza, and so forth.

We started potty training him at 2 1/2, and had limited success, he had some good spells but then it would get worse again, he was only even remotely good with it when he started school at just over 4 (his birthday is late in the school year so he is young in his class). And now at 5 1/2 he often comes home from school fairly wet and almost always is damp enough for me to smell the wee. He s still in pullups at night and though he wants to not have to wear them, he is light years off being out of them at night as his pullups are totally saturated every morning and often I have to change the bedding too as its wet.
Its the toileting problems that I really cant handle. The rest of it I have always out down to him being highly strung and I try to go with the flow even though its sometimes practiaclly impossible as I am not very good at being patient, especially with 2 other younger children to deal with.

He is very very bright, is in the top set at school for numeracy and literacy, he is the only boy in the top literacy group. The books he brings home not only can he read them but he can also read the section at the back where it suggestes questions for parents to ask and suggested activities.
However at school he struggles to complete tasks on time and his teacher thinks he is diruptive because of this.

He was diagnosed with hearing difficultes after bnursery picked up on his ignoring them. I thought til then it was just selective hearing! They said it was glue ear and after a year it cleared up. He has since been dignosed once again. They want to put in grommets and take out his adenoids and I really want this to be the answer to our problems, and yet my gut feeling tells me it wont help.
Although he has the glue ear or whatever, he seems quite sensitive to loud noises, he cannot stand hand driers in public toilets and quite often complains that noises are too loud.

Even with the hearing problems he spoke very early and had very clear diction and fantastic vocabulary really early on. He was starting to tell the time at 2 1/2. One day he just looked at the clock and said "Mummy its 3 oclock".

He is a total livewire and although he is able to sit still for the computer he doesnt for much else. He doesnt sit for long to watch TV though strangely he loves the cinema and would sit in there all day if he could. If we put the TV on for them at home DD will sit and watch it whereas he will be doing headstands on the sofa and leaping around the place. He does sit still at school though and we do get good reports that he concentrates well

He doesnt seem able to regulate his voice at all and we have noticed that he is considerably louder than other kids. Everything seems to be shouted even when I am sitting next to him.

I feel like all I ever is say is "Connor could be a bit quieter please" and "Connor calm down".

I just cant work out if he is just a normal kid and I am hopeless at dealing with it myself, or if there is something going on.
I have always felt he is "different" to other kids but its subtle and really hard to put my finger on what is wrong. My husband disagrees and thinks I am being silly. I told him about the SPD thing and he burst out laughing. I pointed out that 20 years ago kids who couldnt read were considered lazy or whatever and people didnt take dyslexia seriously. He stopped laughinga bit although he still thinks I am being silly).

Most stuff with him feels like a battle.

OMG I can't believe how much I wrote. It feels really good to get it off my chest though.
I would lvoe to hear from anyone else who's had experience of this.

Jillx

ps sory for any typos!

mumgoingcrazy · 21/12/2008 18:57

Hi Jill, my DD2 is only 18 months and has SPD. I've just bought "the out of sync child" as loads of people recommended it to me, I'm still trawling through it but it does talk about toilet training and how a child with SPD might either not even have the sensation that he is wet (which would explain why he is happy to be in a saturated pull up all night) or that a child with SPD might actually like the feeling of being wet. A lot of what you say does seem like SPD, esp the auditory problems. DD2 is ok with certain noises as long as she knows what they are and where they are coming from. We were in a cafe the other day and road works started outside and she couldn't work out where it was coming from and got very upset. Also a new toy that makes a noise or certain books with noises easily upset her.

It might be worth looking at the other sensory processing thread going at the moment, I'm afraid I don't know how to link! There's lots of info on there too.

DD2 is on a sensory diet now by our OT and this is working wonders.

coppertop · 21/12/2008 19:03

Hi Jill.

I have 2 boys with ASD and along with that they have different sensory issues. Some of what you have posted sounds like one or both of mine but obviously I'm not an expert and can't say that your ds has XYZ etc.

The feeling cold all the time reminded me of my ds2. Mine seems to have an internal thermostat that's set differently to everyone else's. The only difference is that my ds is always too hot and would happily pla out in the snow in shorts and T-shirt if he could.

The need for things to always be completely fair is also familiar. My ds1 finds injustice of any kind very upsetting. He has his own set of rules that he thinks everyone should follow and gets upset when they don't. I don't know if that sounds familiar to you?

The food issues are something we've also gone through/are going through. Ds2 seems to have a craving for yoghurt. For a long time he would only eat dry bread (later with butter), yoghurt, and occasionally a banana. It seems to be related to the taste and texture of the food. Ds2 likes food with a fairly bland taste and that have no lumps. It takes a long time to get him to try anything else but sometimes it works.

The toileting issue is something that we're still going through. The Paediatrician's advice (which might also be relevant to your ds) was that some children won't necessarily get the signal to the brain that tells them that their bladder is full and that they really need to go to the toilet. It also means that they won't necessarily feel it properly when they do go so will often only empty some of the bladder - and therefore end up wetting themselves soon after. The Paed suggested putting targets in the toilet for ds to aim at to encourage him to wee for longer.

If your ds has bowel problems then this too can apparently have an effect as the bowel and bladder are so close to each other.

Being very intelligent can also feature as part of AS/ASD but obviously you can also be intelligent without having AS.

The book "The Out of Synch Child" is often recommended on here for sensory issues.

JillMLD · 21/12/2008 19:34

Thank you for your replies. I feel guilty, I really didnt mean to offload so much and didnt mean to hijack the thread, sory galen.

I think that you are right coppertop, he doesnt ever seem to know when its time to go to the toilet until its almost too late. We elmost always have to remind him to go, and nearly always there is an argument to get him to stop what he's doing and go. He often bursts into tears and has a tantrum because he realises he's wet himself and he really doesnt want to (probably cos he knows I get cross). Yet the other day he told me he'd wet himself during registration at school, didnt tell anyone and sat in wet pants all day, not bothered. If I ask him if he's wet himself at school he has to really think and says he doesnt know. I dont know if its cos it happens so much it doesnt stand out in hs memory or if he really doesnt know. If I ask him if his pants are wet he often says no when they are wet, again I dont know if this is cos he really doesnt know or just that he doesnt want me to be cross.

Its just that so much if him is so bright and so normal its a bit hard to believe that anything is "wrong". Maybe I am in denial. I have had sooooo many conversations with so many friends about it, and with my Mum, she is the only person brave enough to suggest that we maybe needed to talk to a child psychologist. When she mentioned it I cried with relief that someone was taking me seriously. My childminder who had him for a while while I worked when he was also at preschool, she is also one of my dearest friends, she also agrees thst he seems different to other 5 year old boys.

At the minute I am thinking I will approach my HV in the New Year and see what she thinks. And probably surf around here a lot too in the meantime

coppertop · 21/12/2008 19:46

The wetting thing sounds exactly like my ds2. He used to be very sensitive to even the tiniest drop of water on his clothes but now doesn't seem to even notice when he's soaking.

If I ask him if he's still dry he will have to physically look at his trousers before he can answer. He's had lots of accidents at school just lately.

It's worth asking for an assessment so that you can either have your mind put at rest or find out what the problem is and know what you're dealing with.

The sensory processing can be a stand-alone diagnosis or it can be part of other types of SN, eg Aspergers/autism, dyspraxia etc so it's worth looking to see if anything sounds familiar.

Good luck.

JillMLD · 21/12/2008 20:08

What do I do ? Do I go to the GP or via the HV or school nurse ?

I am really worried they will jst tell me not to be so ridicuous, and that he's just a normal, noisy, busy, doesnt-want-to-stop-what-hes-doing-for-the-toilet, slightly fussy 5 year old boy. I have struggled to cope since number 3 was born 15 months ago, have been on anti depressants, have just this week given up my job, and I know it sounds selfish but I'm not sure I have the energy to fight to stand up for myself if they say I am being silly.

That said I have a very good relationship with my HV who knows that no matter whose developmental check it is we always end up spending more time talking about DS and specifically his toilet training, and most recently she explained to me the Ed. Psych process at school (though I was so blown away that she would discuss it that I couldnt take it all in) so maybe she wouldn't be too shocked. She also gladly helped me get my GP to refer DS for a scan to make sur ehis bladder etc was ok to eliminate that. I've always thought its just like the signal doesnt get to his brain and not something to do with the old waterworks as such. His bowel control is fine (thankfully).

Is SPD something that the medical profession at large have heard of or will they look at me like a crazy person who has read too many American websites ???!

If we were to get a diagnosis is it going to be an upill struggle with DS for the rest of his life ? How will I cope with a preschooler and a baby as well and a husband who will be in denial ?
I know its not all about me but its all a bit overwhelming.

Thanks again for the replies.

mumgoingcrazy · 21/12/2008 20:17

Your HV sounds lovely so maybe she'd be a good place to start. Our OT gave us our dx but I think you will find the GP will probably give you a blank look and possibly the paed as well.

Unfortunately we have pretty much had to fight all the way for referrals, appts and therapy but it has paid off and we can already see the results. DD2 is much better than she was. I'm sorry you're going through a tough time, having kids is hard enough anyway let alone with extra worrys. Do you have any family nearby that could lend a hand now and again?

DH was also in denial but once we started getting the appointments through and therapy was put in place he started to accept it. I don't know if the DH's ever really get as involved in it all as us mums but he's certainly not in denial now which really helps. Once your DH has accepted there are problems it'll help you to feel you have support and make you feel stronger.

xx

coppertop · 21/12/2008 21:02

It's normal to feel the way you're feeling, Jill. It's as though someone has pulled the rug from under your feet and suddenly the world seems upside down.

When someone finally agrees with you that there might be a problem (after months or even years of telling yourself you must be imagining things) it can be a relief but also sad at the same time.

If your HV is helpful (as she certainly sounds) then it's worth asking her about getting a referral to see a developmental paediatrician for an assessment.

There's a lot that can be done to help with sensory issues. My two have made progress in ways that I would never have dreamed possible. An occupational therapist would be able to give you a lot of advice about which strategies to try with your ds. They will probably go through a sensory questionnaire with you first so that they can form a sensory profile. This will probably involve questions about what your ds likes and dislikes and which sensory areas he has difficulty with. My 2 boys both have a similar diagnosis to each other but their sensory profiles are very different.

The diagnosis you get might depend on the individual Paed. I know that when mine were being assessed the Paed asked us what we thought the problem was and basically took it from there.

You will get a lot of help and advice on here (if you want it of course!). There will usually be someone around who is either going through something similar, has done so in the past, or who has knowledge of that particular area.

amber32002 · 21/12/2008 21:29

Because until very, very recently the docs had never noticed that people with ASDs usually have massive sensory problems, we've ended up with lots of overlapping diagnoses like SPD. Everything that's written about your dd, galen, apart from the aggression, would also apply to me, but I'm definitely ASD. We can empathise - it's a myth that we can't. It's just done differently.

Definitely one for the specialists to sort out, I'd say.

JillMLD · 21/12/2008 21:59

Again I'm really sorry galen for hijacking your thread but maybe at least my neverending stream of questions will keep the thread bumped to the top for you

Thanks again for the replies.
In a funny way I feel very excited at the prospect of it not all being my imagination or over fussy motheringness. I desperately want someone to confirm what I have suspected all along so I can say to the world at large - I told you so. I would also love to be able to give all the well meaning friends that the toilet problems have a root cause.

I suppose another reason for my reluctancer to seek help though is I just can't imagine how anyting would help ?? I feel like, particularly with the toileting I have tried everything under the sun. In fact just 4 days ago I decided I wasn't going to battle it any more but was going to buy some padded pants and just go with it. I decided I wasnt going to tell him they were padded but would buy some in the jersey bpxer style and sell them as panats more like Daddys and not mention the extra absorbency. I think I will still go down this route. Though amazingly today he has been bone dry all day. He's had 2 days off school since term ending and we have done very litle except chill at home, and he's had 2 massive lie ins so he is well rested. Tiredness seems to have an effect on how wet he gets. But I am convinced when he goes back to school the cycle will begin again.

I suppose I just dont get how the sensory therapy works. That in turn makes me think about what I want to achieve.

  • I want him to manage the toileting better.
Maybe time and padded pants are good enough.
  • I want him to have more self confidence.
  • I want him to settle better in bed at night.
  • I want him to not kick off about small stuff so much.
  • I want him to concentrate better at school and not be branded disruptive.

Can the sensory therapy really help with those things ?

coppertop · 21/12/2008 22:45

I think we must be living in parallel worlds! My ds2 has just had his first dry day in ages today too! I don't know whether it's because of the holidays or because the lactulose he's just started taking has had a knock-on effect but it's great.

Sensory integration therapy can have a big effect on being able to concentrate. My older ds is on a sensory programme and the difference in him is amazing. He wasn't as sensory-seeking as his younger brother is but always had to be moving his feet about or fidgeting in some way. Within a month or so the jitteriness had gone and he was able to concentrate so much more. If he has a long gap without the programme, eg over the summer holidays, the fidgeting starts up again.

Once it was realised that he had very sensitive hearing he was given some ear defenders to wear and again that helped him to concentrate a lot more.

The Paed has just recommended something called The Listening Programme for ds2 as a way of helping him to 're-train' his brain. It's something I need to look into in January but the Paed said that he has seen some good results.

It may be that your ds needs more than just sensory integration therapy to help with the outbursts and the sleep difficulties but again a Paed should be able to give you some good advice there. My ds2 used to be awake until all hours of the night/morning but this was helped by using melatonin (prescribed by the Paed).

Other strategies that have helped are things like visual timetables (if your ds is a child who needs to know what is going to happen next and dislikes the unexpected) and social stories (stories written in a specific way to explain certain social situations).

amber32002 · 22/12/2008 08:02

JillMLD, you say...

"DS is now 5 1/2 ?every transition was a nightmare? refused the bottle ?.a beaker?. a bed? moving from Reception to Year 1?.movement and music classes were no fun, he just hated them all, he would never join in like the others, and at birthday parties he hates having to play party games ?swimming?can barely walk for shivering with cold while other kids dont seem to even notice. doesnt want to play outside ?its too cold?has a bike which he can ride ..only ever lasts about 5 minutes at a time. Daddy went away on business ?DS would sleep badly?Going on holidays is really stressful as he won't sleep? sleepover really unsettles him/ a babysitter he doesnt know. He overreacts a lot to things not going his way, he cant bear for things to be in any way unfair, and if things dont go to his plan he freaks out completely. he often comes home from school fairly wet and almost always is damp enough for me to smell the wee. He is very very bright? struggles to complete tasks on time and his teacher thinks he is diruptive because of this. He was diagnosed with hearing difficultes ?he seems quite sensitive to loud noises, he cannot stand hand driers in public toilets and quite often complains that noises are too loud. fantastic vocabulary really early on. he is able to sit still for the computer he doesnt for much else. He doesnt seem able to regulate his voice at all and we have noticed that he is considerably louder than other kids. Everything seems to be shouted"

I'm not a doctor, but I have an ASD and so does my dh and many friends, and every word you've written here is also true for ASDs. The lack of coping with social events, the overreaction to unfairness, the hyperreactions to cold or noise, the amazing ability with words yet appears deaf a lot of the time (we're concentrating on our own internal world and we just don't hear you), the difficulties with voice control, the nervousness about balance, the not noticing other sensory stuff like the feeling of wee. More and more, the scientists are thinking that ASDs are largely a sensory processing problem with the brain combined with it being wired up for extreme speed and fairness (this week's New Scientist magazine, and articles in September 08). Some children end up very, very articulate, others find their wiring doesn't lead to them talking at all.

What might help with the weeing? Perhaps very very regular routine checks. Do school allow a watch that can beep every X amount of time so that he can know that when it does, he has to go to the loo/check to see if he needs it, for example? Can a teacher remind him regularly to help?

I'd say that it's got to be worth asking for an assessment, because this ticks so many boxes.

JillMLD · 22/12/2008 18:15

Just quick reply got to go see to the devasation in the kitchen! His teacher tried a buzzer that went off every so often to remind him to go to the loo and this worked in that he wasnt as wet but he hated it and it made him very angry. Also the teacher sent another child with him to make sure he didnt dither around in the loo. He was spending up to 15 minutes in the toilet faffing about and thus missing an entire phonics session for example. The first child who was asked lasted a day then couldnt hack it because DS was still faffing and thus the other child was missing out too. Another child was asked vut after a week or so of it it was more detrimental due to the anger than it was in helping with the wee. I've read on here about the buzzer watches which sound interesting but I think I might try padded briefs for a while and see if time improves him enbough, He has gradually improved over the years but its so slow as to be almost imperceptible. I will definitely bear the watch thing in mind.

I think in the New Year I will phone my HV and ask for help. We still have 2 preschool children (one is a baby) so are still well under the umbrella of HV care!

I had another chat with DH last night, he is convinced I am away with the fairies, and even told me to go and look at a BBC news story about Cyber-chondria or something - ie we look things up on the net and then convince ourselves we have them. I dont think DS's problems are really that bad in the scheme of things, if he is on the spectrum then its mild and subtle but I just want to learn how best to help him so I think you are right, I should talk to HV.

I've read loads on here about schools being supportive or not. Our HT is great, he himself is dyslexic and has a very strong belief that every child deserves a chance to shine, so hopefully he will be able to allow the school to do anything thast might be needed. We already had to ask him to ask the (new) teacher to not make them wait for playtime for the toilet and he was on the case immediately, said we cant have children getting hung up about toilet issues, it will have negative side effects which will affect their performance in the classroom, and he sorted it out that day before lunchtime - just fantastic.

Jill
ps Amber I loved your summary of all my waffle

Tclanger · 22/12/2008 18:22

This reply has been deleted

Message withdrawn at poster's request.

Blossomhill · 22/12/2008 21:15

TC ~ to be honest I think that in the vast majority of cases they that spd is part of asd. I know lots of children with language/speech/social communication as dd is in a language unit and it is defintiely the asd kids that are mainly affected.
For example I honestly think that at dd's xmas school play you could have picked all of the unit kids with asd as they were all the ones shying away from the major bright stage lights. What I am trying to say is the kids with say delayed language, speech don't do it, sorry after my ramble

Blossomhill · 22/12/2008 21:16

Sorry forgot to add my dd definitely has major sensory issues and has AS. I would say her sensory needs are what cause the most problems tbh

Tclanger · 22/12/2008 21:55

This reply has been deleted

Message withdrawn at poster's request.

amber32002 · 23/12/2008 08:15

Tclanger, ASD is a 'cluster condition', as I best understand it. It is a combination of obsessional behaviour, and social clumsiness, and physical clumsiness, and sensory problems, and food faddiness, and extreme logic/focus. Any of these can take "centre stage" and lead to a doc diagnosing OCD, Anorexia, Dyspraxia or SPD or someone just thinking we're a Rude Bloomin Pedantic Know It All.

If you get the lot, they're more likely to say ASD. But there's great big overlaps, and a lot of docs who don't ask the right questions in the first place so end up diagnosing it as (for example) SPD or dyspraxia when the next doc would have said ASD because they thought to ask about something else. Girls in particular are often misdiagnosed, because we're often not as blantantly rude as boys dare to be, and often disguise our social problems much better.

The sensory stuff still isn't in the diagnostic lists for ASDs because until very recently almost none of the psychologists had thought to ask about it. In fact, most of the lists don't even ask about eye contact in any meaningful way! And we're very literal: We answer what we're asked. It will be much improved in the 2010 DSM V lists, we hear.

It wasn't until people with ASDs started writing down about their lives that some clever person noticed that almost every bloomin one of us writes about major sensory issues. (We need a smiley for "rolls eyes in despairing way").

amber32002 · 23/12/2008 08:15

PS, for 'doc' read 'diagnostic person' not standard GP

JollyPirate · 23/12/2008 08:42

Have read all through this but no time to post in any detail at the moment. DS is 6 and SPD was discussed by an early years advisor when he was 4. Reading some of the posts here is ringing an awful lot of bells.

I got DS seen by an OT this year who said without doubt that he had marked sensory processing difficulties, His school have also made the occasional comment mooting Aspergers as a possibility (which I am not convinced by as DS is very empathetic of other children). DS is also a carbon copy of me as a child according to my Mum which makes me question whether or not I am on the spectrum somewhere (need a "puzzled" emoticon now).

I am a HV so have information at my fingertips, however, until somebody mentioned SPD in relation to my son I had never heard of it and neither had any of my colleagues - now of course I am picking up children with obvious sensory difficulties when parents ring me saying "the school have x, y or z concerns" and referring into the OT service for assessment and support. SPD is still not widely known about.

My DS is doing something called "Gym Trail" at school and all I can think is how like one of the other children who has ASD DS is.

Will post more later as I have to go to work now.