Sensory Processing Disorder

foxinsocks

Hi, I'm looking to talk to parents or anyone who's had some experience with SPD. My daughter Hannah is 5 and a half now. A few months ago she was diagnosed with an autism spectrum disorder, specifically PDD NOS (Pervasive Development Disorder, Not Otherwise Specified) and I've been reading a bit about SPD. It seems a lot of the 'red flags' for SPD and autism are the same. Hannah's autism is mild, and she is high functioning, and at the moment she is not getting any additional therapy outside what the school do for her. She has a full time SNA and 5 resource hours per week. Her teacher and the other support staff at her school have been wonderful. Anything that has been suggested has been put in place straight away, including visual aids to scheduling Hannah's day, a timer to give her some 'me' time in the classroom, and a visually based reward system. The rewards include playing with specific toys in the classroom, or going for small walks to see the roses and other plants in the yard. She's in senior infants now.

Enable Ireland have been meeting with the school, and with me in order to put in an Individual Education Plan in place for Hannah, with specific goals and reward systems to help her learn and get everything she can from school. Academically Hannah is doing very well, her reading and maths etc are either at, or ahead of where she needs to be at this stage. She's also a very happy kid at home, and generally. At school I have been told that the only thing that really distresses her is unexpected contact, like jostling in a line, or accidental bumps. She's quite affectionate with me, has no general tactile problems, and loves contact, it's the shock factor that seems to distress her.

Anyway, my problem is that even though she has this terrific support at school, I'm concerned that any sensory problems may have been overlooked, or merely attributed to her autism. I'm not in denial or saying that she doesnt have autism, I just think she may have elements of SPD as well, and that her overall happiness and security could be improved with therapy from an occupational therapist, using Sensory Integration tools etc.

Ok, I'm rambling. I basically just want to talk to someone who's had experience with it, and how they went about getting diagnosis, or treatment. So far Hannah has only been evaluated by Enable Ireland, and although they have been brilliant, I'm wondering if there are other options, possibly something we might have to pay for?

Thanks for reading!
Megan

Nevyn

My son who has aspergers has some sesnory issues as well, certain sounds stress him out completely, ( broken florecent lights, high pitched drilling, infants squaling, cars with loose fan belts ) the same with certain fabrics he can't stand on his skin and anything stickie on him will have stressing and heading for an episode.

We have been told OT may help but the child and family clinic he is with don't offer it and as he it with them he is ruled out from any of the other centres that do offer it so that means going privately and there are still waiting lists.

His sensory issues were noted in his case file but he was not given a separate SPD diagnoses and I have just been trying to find ways to work with the issues either eliminating them or giving him supports and work around for when
something triggers him.

I am glad to hear you have gotten early intervention for your little one and the schooling supports, but I am not currently aware of any programs running.

I do know http://www.sensationalkids.ie/ is a charity aimed at getting them up and running.

http://www.sensationalkids.ie/Version2/index.php?option=com_content&view=category&layout=blog&id=7&Itemid=5

foxinsocks

Hannah's OT at Enable Ireland is on leave at the moment, but he has previously evaluated her mostly for motor skills, and as she tests within limits she was mostly discharged. He hasnt gone into sensory evaluations with her, beyond a cursory auditory survey. When he gets back I will be meeting up with him again to see if I can push it forward. I know he has some sensory training, and the Monaghan Enable Ireland branch put in a sensory room not so long ago.

All this aside though, So where should I start if I chose to go privately? I have no idea where to look...

vincenzo1975

some things amaze me.we have a little girl who is now 7, with Autism. We have gone through the mill(like most in our position) over the last 5 years in coming to terms with, and pulling out every stop to get the best solutions for our little one. one of the most obvious things that happens in our situation, is that like it or not, you become an amateur expert on things like speech therapy, occupational therapy, child phsychology etc. In a few years you learn stuff natuarally that others spend years in university trying to understand.

Anyway, with all that i have come across, i have never heard of SPD. No phsychologist, teacher, therapist or parent support group has ever mentioned it to me. I have been looking it up and it very close to a lot of what is attributed to Autism. In our case, our daughters main problesm are communications. she is very similer to yours in ability in the class, she too in in mainstrem (1st class) with an sna and resource hours and is doing very well. She has begun to make freinds and all is going well, the school is excellent and very supportive.

the sensory issues that she has displayed have been overcome by familiarity. There was a time when dark corridors, loud places like funfairs, or very busy places were just too much, but we found out by trial and error that we could overcome these by giving her small doses of the environments that were causing the problems, with a very big empahasis on rewards. Still though, she still has some things that we just avoid (fizzy things 'burn' her tongue for example.

Sorry that i cannot be of much help, but this is an disorder that I am only new to (thank you for that ) and i intend to look into it further.

some resources that may help you is:
http://www.saoirsesupport.proboards107.com/
this is an excellent and very new webforum for parents, with an extremely high level of expert input from the moderator who is an educational phsychologist.

Also, you could try the book 'The out of sync child', which we have found is one of the best out there.

finally, it may be worth searching through this website
http://www.aoti.ie/
It is the official site of the occupational thrapists of ireland, it includes a list of private practices you could contact.

It sounds like you really are on top of this, fair play to you and best of luck.

cuddlycavies

It sounds like you have had some great advice already, and I am really impressed with the support that you have been given within your child's school.

In my opinion, sensory processing issues are what autism is all about. The neuro developmental pathways that connect up everything we see, hear, feel, smell, touch and experience can be over or under connected. Sounds can be too loud or soft, it can be difficult to distinguish between fore and background noise, and certain pitches can be very irritating. Obviously this means that it is hard to concentrate, to focus on what people are doing and therefore to learn to talk and socialise, or understand when someone is happy or sad or angry. In fact a lot of the so called "triad" of impairments are overcome, when the individual starts getting the sensory intergration therapy they need.

You really need a good quality Occupational Therapist to do a full assessment. This may involve a "Winnie Dunne" which is a questionaire the parent fills out describing how the child reacts in certain situations. An OT can then prescribe a series of excercises to address the issues identified and start to teach the child bit by bit to tolerate things they are sensitive to. Much like Vincenzo has done.

Occupational therapists are expensive to use privately and the quality varies considerably. However, if you invest in a good one to do the assessment, you may be able to hire a recent Graduate or even an ABA tutor to do the exercises. An OT or Physio grad would have the understanding of the physiology of the muscles and would be able to read the assessment from a professional point of view. An ABA tutor from one of the schools would be experienced in implementing the exercises daily with the kids they work with in school.
You can try to do it yourself, but make sure you get coached so you do it properly. Your child will notice if you are not confident!

It really depends on the individual assessment, what you need to do. The autistic spectrum is so wide that these autism-lite descriptions come up such as P.D.D without taking into account the full range of sensory distortions. I think if they just gave you the autism tag, you would get access to the full range of services straight away and then in a couple of years, people might not even realise your child had autism. Having said that, it is only children under 5 years who are supposed to be guaranteed the full access to services, and that can be limited depending on how well staffed they are.

try checking out the Solas centre for an assessment. And check the autism ireland website to link up with potential helpers. www.autismireland.ie

good luck, it sounds like your little girl has chosen a great mammy!
xx

foxinsocks

The out of sync child Book is wonderful, its like SPD for dummies, but it doesnt get patronising at all. I've read it through once, and I'm about to start going through it again with a highlighter pen. A lot of it is ringing alarm bells.

I think one of the reasons I'm partially fixated on this is because they see SPD as treatable, and if a lot of Hannah's problems are treatable then yes, in a few years time, she may no longer have any problems. With autism though, its treated as a lifelong disability, something that will never be overcome, only compensated for. I guess I'm looking for some hope that she'll be able to be as happy as an adult as she is as a child. That's really all we want as parents, isnt it?

What I'm intending to do is wait for the OT in Enable Ireland to get back, and then see what I can work out with him. If i'm not satisfied after that I'll start looking privately. Her autism diagnosis was delayed due to the fact that she's so bright she was masking a lot of her problems by working out ways around them. I am afraid she's compensating for sensory problems in the same way, but of course I'm not an expert on SPD. From what I've read a lot of OTs arent all that familiar with SPD or sensory integration therapy, so I think i'm just trying to hedge my bets. She gets to stay with Enable Ireland until she's 6, which is in March, so given that they have been so supportive of her I'd like to get as much out of them as possible before she's turfed out.

I've been super impressed with her school too! You hear so many horror stories about kids with problems being punished instead of supported!

Thanks for the replies you guys!

Megan

lostinnappies

My neice has been diagnosed with dispraxia and it is a very difficult situation. My sister has been after the so called "help" for a long time. The resources in this country are terrible. Having known another child in UK with autism and seen the difference in the kind of help he received im apauled and the Irish government. Basically you have to ask every professional out there about the local resources available to you and keep harping on at them over and over to get them to do something. Also look up on the interent for relevant treatments for such a condition and put it to your psychologist or doctor and see if there is any such treatment nearby. Best of luck you and your little one are in my thoughts.

lostinnappies

foxinsocks wrote: »

The out of sync child Book is wonderful, its like SPD for dummies, but it doesnt get patronising at all. I've read it through once, and I'm about to start going through it again with a highlighter pen. A lot of it is ringing alarm bells.
Megan

http://books.google.ie/books?id=3gtL9XaZ8GwC&pg=PA21&lpg=PA21&dq=spd+autism&source=web&ots=_pXvD2o6pN&sig=4zY2dgAJ_N5-jUiRBAz6KdxpHEk&hl=en&sa=X&oi=book_result&resnum=2&ct=result#PPA54,M1

hope the link works ... out of sync book online

stella1000

my son is 6 and a year ago he was diagnosed with motor dyspraxia. He was in junior infants at the time and was having great difficulty intergrating into the classroom/ playground setting. His teacher was quiet concerned but didnt really know where the problem was. He was evaluated by an occupational therapist privately as at the time there were no public services available. the clinics approach is sensory based and they use it as part of their assessment process. He has received weekly clinic based therapy in Dundalk for the last year. His OT is great with him. We have seen a big improvment in his self confidence and in general he is a much happier boy. We still have a way to go and there are some symptoms that he displays that indicate the possible existance of other conditions. His school are supportive however he does not have an SNA. He still has a lot of difficulty with his soicial skills. Hope this might help some of the earlier posters

Trinity

After spending 2 years on a waiting list for an OT assessment i said fcuk this googled OTs and picked up the phone and made an appointment for the following week.

It costs me 65 euro an hour, one hour a week. It took 4 hours altogether (the first 4 sessions) to diagnosis him with severe movement disorder and a whole list of other things. I'm still reeling. I always knew but nobody would take me seriously. Been attending mater child guidance for years but they never assessed him just gave me lectures on my parenting.

We are talking about some of his scores falling in 0.2 percentile. Thats less than 1%.

I dont have 65 euro but i get it somewhere tbh.

billygruff

I am not sure it link below has been mentioned but our daughter has had NLP and audio therapy from one of the clinics and it has proved useful.

http://www.neurodevelopmentaltherapy.ie/index.html

undecided

I dont really have anything to add to this thread some great advice already given! I have a little fella 5 on the spectrum and have had great sucess with OT re SPD. It was the OT who Identified it to me as I hadnt a clue (knew wasnt normal but though it was just him being him). weve been doing OT weekly since sept and progres is brill both with SPD and motor skills.

Fox sent you a pm!
ps. There is a discussion on similar topics on magicmum.com have to say I got alot of great info might be worth a look!