Sensory Processing Disorder (SPD)

Mychildhasspd

Morning All,
My child has been recently diagnosed with Sensory Processing Disorder (SPD) by a Pediatric Occupational Therapist. My child is attending main stream school and getting weekly OT sessions, fortunately we can afford them privately at the moment, we're also on a list for the HSE OT service but have been told that it won't start till sometime after Xmas, that could be Jan', Feb' or later we just don't know.

This is all new to us, we didn't even know the condition existed until the diagnosis and needless to say we were shocked to get it. Of course it could be a hell of a lot worse, but when it's your child you just want the best help and education you can get for them.

I've been told by the professionals that SPD is nearly always present in kids that have DCD, Dyspraxia and Autism etc. Thankfully to date we've only had a diagnosis of SPD.

At present SPD in isolation is not a recognised condition by the Depts of Health / Education when it comes to learning or teaching supports for kids in school. It's odd that this is the case as all/most professionals know about it. They know the issues that it causes. They know what will help alleviate the problems, therapies are the same/similar to those for Autism etc. Another very odd thing is that the policy document that covers special needs for kids specifically states that at present SPD is not included in their must care for lists. (I'm paraphrasing). The policy document that I was shown by the person from NESC/Seno we met is not even on their website (www.NCSE.IE) to view. Well, if it is there I could not find it!

So, what I'd like to find out is...

1) Are there many kids out there with a confirmed SPD diagnosis?
2) What supports are they getting in school, if any?
3) What did you as parents have to do to get the supports, if any?
4) If you've a potential diagnosis what help/info/support are you getting, if any?

Please do come back to me as I do want to hear your journeys/battles that you've had to date. You're experiences will help not only my child but everyone else reading your posts.

If you don't want to leave a post please do feel free to PM me and I'll be happy to contact you directly.

(Moderators if you're not happy with my PM request please feel free to remove that line, but please don't remove my posting contact me to make alterations if required. Thanks)

Thank you for taking the time to read my post.

byhookorbycrook

If you haven't already talked to the wonderful people at sensationalkids.ie I'd have a look at the website and maybe contact them. They have been there , done that, so might have covered ground that will help you.

Mychildhasspd

byhookorbycrook wrote: »

If you haven't already talked to the wonderful people at sensationalkids.ie I'd have a look at the website and maybe contact them. They have been there , done that, so might have covered ground that will help you.

Hi byhookorbycrook,
Thanks for your post.

cynder

Where do you live, in county clare the clare crusaders are brilliant and they are FREE,

http://clarecrusaders.ie/wiki/AboutUs

Mychildhasspd

grindelwald wrote: »

Where do you live, in county clare the clare crusaders are brilliant and they are FREE,

http://clarecrusaders.ie/wiki/AboutUs

Hi,
Thanks for your post. We're attending a clinic in Cork, they're great.

I was hoping to get an idea what other parents with SPD kids were having issues / problems with eg learning support in school, how they get on with HSE early intervention team etc etc

Thanks.

callancott

Hi, Just to let you know that there are other people going through what you are, I have an 8 yr old son, who up until recently I thought had Dyspraxia and a touch of ADHD, but now since he has been to the HSE Occupational Therapist, they think he has some form of sensory processing disorder, he has been to a psychologist earlier this yr who seems to think he has tendencies towards Dyspraxia and ADHD, my son has not been formally diagnosed with any of these, but I can understand what you are going through, it is very frustrating for a parent and hard work, I have 2 other sons aswell. He goes to a mainstream school and has extra resources help.

Mychildhasspd

Hi,
Thanks so much for your post. The whole area of special needs / educational supports is so disjointed. The powers that be don't have any joined up thinking on the subject. They (NCSE.ie) recognise that my little lad has an issue and have told us what will help him. When we ask them to implement their own recommended solutions they say "oh SPD is not a recognised theraputic label and is not covered by their special needs policies bla bla bla". It is so very very infuriating!

It's kids like my boy (5yrs old) that need help now, not when they're 14 or 15 causing trouble in school and elsewhere all because some bunch of bureaucrats refused to give him 15 or 20 minutes help per day in junior/senior infants.

callancott wrote: »

they think he has some form of sensory processing disorder, he has been to a psychologist earlier this yr who seems to think he has tendencies towards Dyspraxia and ADHD, my son has not been formally diagnosed with any of these............He goes to a mainstream school and has extra resources help

They all (NCSE/Seno) say that if our boy had a recognised diagnostic label ie DCD, Autism, Dyspraxia etc that they'd offer help. I'd really love to know...
1) how you managed to get the "extra resources" for your lad without being "formally diagnosed"?
2) what form of help is he getting?

We're running into a brick wall at the moment so any info you could offer would be a great help to my 5 year old boy.

Thanks so much again.

callancott

Hi
I can totally sympathise with you, they don't recognise this (SPD) as being a special needs disorder, it is very frustrating. The OT visited my son 2 wks ago in school and seems to think that he was doing quite well, but this is a very different story when at home trying to get him to sit down and concentrate on h/w, he finds it hard to sit still at school aswell because the teachers have told me this, I think he must have been on his best behaviour that day because he knew they were watching him... He has been to the OT about 3 times now in the space of 4 mths, so I don't know how regular that is going to get, he has got extra help in school since Senior Infants, I think they do this in most mainstream schools, it is for children who just need a bit of extra one to one help, it is not just for children with special needs. You should enquire about this to the Principal.
Hope this can be of some help to you

cynder

Mychildhasspd wrote: »

It's kids like my boy (5yrs old) that need help now, not when they're 14 or 15 causing trouble in school and elsewhere all because some bunch of bureaucrats refused to give him 15 or 20 minutes help per day in junior/senior infants.



They all (NCSE/Seno) say that if our boy had a recognised diagnostic label ie DCD, Autism, Dyspraxia etc that they'd offer help. I'd really love to know...
1) how you managed to get the "extra resources" for your lad without being "formally diagnosed"?
2) what form of help is he getting?

We're running into a brick wall at the moment so any info you could offer would be a great help to my 5 year old boy.

Thanks so much again.

My lad will be starting school next year he has no diagnosis, ADHD Is question marked, he is wait-listed for asd assessment and is in the care of the early intervention services receiving help - speech therapy, 1 to 1 early intervention educator - group therapy with early intervention educator - wait-listed for psychologist. The early intervention educator also visits him at the preschool.

He has been with them for 1.5 years. He will be 4 at xmas and he is at pre school he has his own pre school assistant for 2 days a week. Because he is starting mainstream school next year in January the early intervention team will start the process of trying to get him a SNA for j.infants next September. They also will try to diagnose him with a specific speech problem, they wont diagnose adhd until he is at school. ASD is looking less likely but he still ticks some of the boxes. Possible PDDNOS but not too many diagnose that.

Just because a child has a diagnoses or doesn't have a diagnoses should not affect their need for an sna, its done on an individual case to case basis. Did the early intervention team not put his case forward? Im sure the school that my lad will go into will give him resource help they have a speech therapy room and a sensory room( he does not need the sensory room). But I will discuss this with them before he starts in September so we all know where we stand.
I am attending his IDP on Thursday along with his pre school assistant.

Mychildhasspd

callancott wrote: »

Hi
I can totally sympathise with you, they don't recognise this (SPD) as being a special needs disorder, it is very frustrating. The OT visited my son 2 wks ago in school and seems to think that he was doing quite well, but this is a very different story when at home trying to get him to sit down and concentrate on h/w, he finds it hard to sit still at school aswell because the teachers have told me this, I think he must have been on his best behaviour that day because he knew they were watching him... He has been to the OT about 3 times now in the space of 4 mths, so I don't know how regular that is going to get, he has got extra help in school since Senior Infants, I think they do this in most mainstream schools, it is for children who just need a bit of extra one to one help, it is not just for children with special needs. You should enquire about this to the Principal.
Hope this can be of some help to you

Hi callancott thanks for your post.
Our little fella is OKish at home. In the class environment its a different story, he just gets overwhelmed with all the action/noise. The professionals call it "sensory overload". We do a lot of OT ourselves with him at home and this is paying dividends. The home sessions involve a lot of heavy work. We're lucky he's tall for his age, he passes for a 6/7 year old. Out shopping in the supermarket we even get him to lift bags of spuds and put in trolly.

On the OT front with our little man we do the following.... (They may or may not suit your child check with your Therapist/Doc if unsure)

1) We got an inflatable exercise ball, the type you see in gyms, a smaller version. (€5 or €6 Argos). He sits on it watching tv, reading etc. He also touches his knees with op elbow 10 times. He also lies across it watching TV or reading.

2) Touches his ears with his shoulders one side at a time. each side 10 times. This can be done on or off the gym ball or both.

3) Exercise is also very important eg: Cycling, walking, swimming anything that'll get him moving is the key. There are days he doesn't want to do anything so we have to make him and once he starts he's off and running and loves it.

4) Body brushing: We have a small soft brush that we use on his arms, legs, tummy and back 10 times each.

5) We have a sensory cushion for him to sit on in class and home. (www.lisheentoys.ie)

6) We use a raised reading board at home for his writing and reading. (also lisheentoys.ie)

7) Any school work etc we do in blocks of 15 or 20 minutes only. If he has work that'll take longer we split it up with play or even his lunch/tea and then go back to it, but we keep to the time rule.

8) We've also started using a reward chart. When he's good ie all homework and exercises done, PJs on etc he gets gold star. There's a reward when he get 10 stars. (something v-small that he picks). This is definitely working, so far.

9) Any taskes he has to do ie homework, exercises etc we would always talk to him about them first. For example I would say to him, now after our tea we'll do our homework and reading, and "name an exercise". I would get him to repeat what I've just said, we even go so far as to shake on it with him to make "the deal". Anything to reinforce our plan. Then when it's task time he's expecting it. There are moments he simply doesn't want to do the jobs. I would then talk to him about "the deal" and gold stars. Issues still do happen but are getting less and less. If/when world war III does start we say OK no "jobs" but no "gold stars" either.

I think one major issue we certainly had/have is gauging when it's the condition playing up or him simply being bold. This one is tricky no matter what the child's issues are.

One of the key items that has become very clear is that our fella needs a routine eg home from school, play/relax, lunch/tea, homework, exercises, play/relax then bed. Routine is also key to the morning time. It's also v-important to have things v-calm, sometimes hard to do but when necessary bite the lip and count to 10! The routine we have helps keep things calm.

I hope the above helps, but as I've said it's what we're trying and I've no doubt the approach will evolve further over time.

Our interactions with the Principal/school are ongoing, but as he's (thankfully) only got SPD appropriate help is v-slow in coming from that front.

Any ideas that anyone else might have please pop up a post.

Best of luck.

Mychildhasspd

Thanks MAORISH for your info and the site links.

MAORISH wrote: »

I have being a classroom assistant to a number of SPD kids over the years

We'd love to know what type of work you did with the kids? Our boy is just over 5 and has not been offered any learning supports by the HSE. We have been promised occupational therapy, but we've no idea when this might happen. We're running into brick walls on every turn in relation to the learning supports. So, we'd desperately love to know how the various kids managed to get your help.

Any insights you could offer however small would be invalueable and very gratefully received.

Many thanks.

Eric Isherwood

Hi just to let you know we are running a conference in Cork next March covering all the Autism Spectrum.We are looking for speakers from Groups around the Country especially Parents to speak! More information at

www.letsconnectautismconference2011.weebly.com
Or www.facebook.com/autisminnocentoutcasts

Mychildhasspd

eastview wrote: »

Hi just to let you know we are running a conference in Cork next March covering all the Autism Spectrum.We are looking for speakers from Groups around the Country especially Parents to speak! More information at

www.letsconnectautismconference2011.weebly.com
Or www.facebook.com/autisminnocentoutcasts

Hi Eastview PM sent.

Eric Isherwood

How do I find pm sent?

Mychildhasspd

eastview wrote: »

How do I find pm sent?

Hi,
Private messages are readable via box just above logout button beside/below the "Welcome, eastview" message at top of screen.

Cheers

Dags

I found the information you listed very helpfull as i have achild showing signs of dyspraxia. His biggest problems are touch and emotional highs and lows. Seeking the right person to help him is a ongoing battle. Anyone reading this that feel they have any advice to give please do it will be much appreciated.

Bicycle

I've two children with dyspraxia.

For us (Mid-West) the diagnosis was difficult. Our older child had had problems for years. She couldn't write. All the teachers were saying she was lazy, not able for the class she was in. More than one teacher suggested she stay back a year. But she was doing well academically even if she wasn't coping very well.

Finally, having pressurised the primary school for many years, a change of principal meant we got an educational psychologist's assessment. The Ed Psych suggested that an occupational therapist could better diagnose our daughter.

Having waited for an assessment via the public system we went privately to an OT. Meanwhile our son was showing signs of writing difficulties. So when our daughter was being assessed we spoke to the OT who agreed to assess our son.

To cut a long story short, both were diagnosed within a matter of months. Because our daughter had the Ed Psych assessment she was straightforward. Because our son had gone privately we had to organise an Ed Psych assessment through his school. We were then referred to another clinic. Finally we got a diagnosis of Dyspraxia, Dyslexia and Aspergers for our son. Our daughter is fairly rare in only having dyspraxia on its own.

If you are concerned, the Dyspraxia website is very helpful www.dyspraxiaireland.com

Amanda Kirby is the recognised expert in the field and has written a book entitled "Dyspraxia". Its well worth reading

http://www.dyspraxiafoundation.org.uk/professionals/rs_ak.php