Sensory Processing Disorder

[Sally200]

This is my first time of messaging.

DS2 has, within the last week, being diagnosed with SPD. He is 2 1/2 years. I have known since he was about 12 months that he was not developing as my eldest son - particulraly in relation to his speech. He have seen speech therapists - some said language disorder, others speech dealy, most said he showed autistic tendancies but that he was not autistic. The NHS have been no helpo whatsoever - am still waiting for some feedback from therapist who saw son in January! I have managed to find the most amazing lady, a Special Needs Expert, who diagnosed SPD. When she told me about it it felt like everything made sense. I have read two books (trying to get my head around it and think as a coping mechanism) - I now understand why Harry has struggled and why he behaves the way he does.

She is coming to see us next week to discuss her recent findinfs (he had a full assessment with her last week) and to give us a sensory diet.

I have cried so much - both before the diagnosis because I did not know and after - quite a lot to take in. I feel pretty isolated and alone. DH is lovely but does not really understand.

Just wondered whether there was anyone else whose child had been diagnosed with SPD? I would love to speak to someone about their experience and what they went through, what worked, support avilable etc etc - the list goes on and on.

Sorry for the long message.

Sally200

Welcome Sally - not sure if this helps but i have two boys with asd - twins aged 5 also NT daughter aged 7. DS2 has a lot of sensory processing difficulties as part of his autism - problem with proprioceptivity (knowing here his body is in relation to the world around him). also severe speech delay as well as additional problems with phonology (pronunciation). He is at special school here for children with SLD primarily but a lot of expertise and support for autistic kids. Our biggest problem with him however is sensory seeking behavior - constantly on the go, slamming his body/body parts into things, climbing, lying down when we are out walking etc. So sorry you are upset about this - you will get a lot of support on mumsnet - I find it invaluable - hopefully someone will come on the thread who is more helpful than me!! All the best

Kerbop
Thank you so much for the message. From reading the books I think DS is sensory seeking - as with yours very active - will often run around in circles without getting dizzy or shake his head from side to side for long periods. He also finds the need to put his body on the floor - for example he will spend alot of time laying on the floor when he plays - he will put as much as his body on the floor as he can and will move as much as possible in order to get the touch from the floor as much as possible.

I feel as though his speech is slowly coming on although pronunciation is a proble. Expert is looking at auditory problems - she says he hears the whole of a word however he does not process it fully.

Have you had input from NHS? Were you given a sensory diet to work with? Has there been an improvement?

Sorry for the questions - just don't know who else to ask.

Saf thing I discovered today from more internet browsing on SPD - hardly anyone with it is diagnosed. Can't help but feel that we are lucky to know and to hopefully be able to help him.

Thanks again

Sally

i think it is great that you have managed to get some practical support for your ds at such a young age. our ds has been in the system since he was 2.4 (language/sensory issues) but has only just been assessed by an O.T. who has been great and will also be starting a sensory diet with ds in the next few weeks.

i wish my ds had had support with his sensory issues before going to nursery as i feel that he has struggled to make progress in the last year as he finds it so difficult to maintain attention. hopefully your ds will have many of his needs addressed at this early stage. early intervention really is the key!

RaggedRobin
What made you initially concerned about your DS? How old is he now?

I don't know about you but most people who I talk to, including professioanls, have not heard of SPD.

What did the assessment with the OT involve?

Sally

we don't have a dx for ds, he just seems to have a collection of "issues"! initial referral was to speech therapy because he wasn't understanding instructions, but speech therapist observed a long list of traits that he has been (hopefully) growing out of since; lack of eye contact, repetitive language, echolalia, etc etc.

i had had concerns since ds was about 18 months old that something might be different about his development. he needed to be "held down" for anything up to 2 hours to get to sleep, he was extremely active, never really stopping, uninterested in shared activities, followed his own agenda, lay in close to his toys, chewed his clothes, spun round in circles, would run off at any opportunity, etc, etc.

he is 4 now and i'm not sure where we're heading in terms of a diagnosis, but at the moment i'm happy because we are starting to put some strategies in place. the OT was very thorough. she gave ds a series of simple tasks to do with pencil control and some jigsaws to play with. as the assessment went on and they began to do more physical tasks like catching beanbags and playing "simon says" type games, and ds became more excitable and "sensory seeking". OT was very observant re ds's responses and established that he has hypermobile joints and low muscle tone which makes it difficult for him to hold a pencil. she will do some activities with him to improve this. she also established that he needs lots of deep pressure activities, and movement breaks in nursery to improve his attentiveness during quiet working time.

this will all hopefully be getting under way soon. glad to hear that you are getting some support for your ds too.

My DS is two and has autism with sensory processing problems. I'm going on a course for parents here on Wednesday run by a specialist OT who is apparently very good.

DS likes to lie close to toys especially when lining them up precisely and is amazing at running in circles with remarkable awareness of space and anticipation. He used to be obsessed with spinning the wheels on toys but doesn't do this so much now. He loves bouncing on beds and furniture too

I'll gladly pass on any relevant information I get, unless you're in the area and can be here for Weds

My ds is 4, has a dx of asd, but his problems are very much SPD. His OT has recommended body brushing, games that cross the midline etc for him. he also had problems holding a pencil but in the last month or so has started holding in the tripod grasp.
I have also questioned the asd dignosis, he has a few traits but not really that many, most of which he seems to be "growing out of".
Some people say that SPD is a seperate condition, others say that it is part of asd.
Have you read "the out of sync child"? it is briliant for understanding SPD.
If you get a programme for him from the OT make sure you follow it - it can have dramatic effects in quite a short space of time. the massage techniques and dry body brushing have made a huge difference.

My boys are 6 and almost 4 both with autism and DS1 in particular has a lot of sensory integration issues and exhibits a lot of sensory seeking behaviour - also crashing, lying down and rubbing against things, as well as spinning madly and rubbing his head on the floor when he needs to self soothe. Both boys are very sensory defensive, in certain situations, too.

OT have been no help. They concluded that I seemed OT have a handle on his sensory issues and discharged him after only focussing on his minor fine motor difficulties. Within weeks of discharging him, it became clear that he was constantly going into sensory overload at school with pretty catastrophic results. So, school have asked for a re-referral, which means he might be seen again around August

Reading all of your posts seem so familiar. DS will lay down on the floor to play with his toys - he ensures that as much of his body is on the floor and rubs the floor/toys to get as much sensory input as possible. He too is always on the go - he can run around in a circle for about 3 minutes without getting dizzy. He also sometimes shakes his head from side to side when he needs the input. Jumping on my bed is a favourite as well as putting all of the settee cushions on the floor and jumping on them.

I am starting to have problems with DS on a night time - for the past week he is waking most nights and coming into my bed. Before I kneww about his SPD I would put him back and do that until he eventually stayed in his bed. Now I am not sure whether that is the right thing to do. When he comes into my bed it can take me anywhere up to three hours to get him to sleep as he is constantly moving and fidgeting. Any advice would be appreciated.

I cannnot attend the course tomorrow so would be so grateful if you could pass on what you learn.

I am so taken back at the little support which is out there for SPD children and their parents. Does everyone feel the same?

Sally

Hello, DD2 (2yr 9mo) also has SPD along with Development delay. I'm very fortunate in that we have had very good input from the NHS (until recently). I really think it varies from trust to trust. At 11 months she was having physio as this was the main delay at the time and our physio noticed that she had sensory issues too, and referred us to an OT who was sensory trained. She was amazing and so totally clued up with SPD. She used to be severely tactile defensive and wouldn't touch anything or be touched and this is now ok. Auditory processing was a close 2nd and the OT put her on a Therapeutic Listening program which has helped her so much in so many areas. We are waiting for an appointment at GOSH to have her auditory processing officially assessed (rather than the OT sensory assessment) but we know she is much better than she was.

Our input from 11 months was weekly Physio/OT/SALT and from 15 months she had weekly Portage. She is now in pre-school so the Portage has stopped. She has physio every fortnight and OT in half term blocks. SALT provision has been cut right down and as a result we have gone private for this until she is statemented (we are still early on in the process).

I hope this helps, I found it useful to hear other peoples stories when I 1st found out so I hope this helps you.
x

Sally (and anyone else interested) I'm hoping to get links to some good resources and a few useful handouts which I could pass on.

DS is bound to have one of his nights as I need an early start tomorrow to get there so not sure how clear-headed I'll be...

I'm the last person to advise about sleep, sorry, but many people here have had some success with Melatonin which is usually prescribed by a paediatrician.

Of course my son has chosen this of all weeks to break the scanner and printer but I'll sort something out with email / snail mail if need be

Another one here with a dc with SPD, his is a result of a congenital brain problem. Haven't read all posts but you are lucky to get input now. It will help to have a sensory diet and viewing your child through an SPD perspective will help you cope with him better because you will understand where he is coming from.

The ALERT programme from the sensory Integration Network has been recommended to me but I've not done it myself. We've had OT/Physio/SALT/POrtage over the years but actually what I've figured out myself has tended to help the most.

Since he started school I've had to educate the teachers but they have been very good at modifying things for him. (SN school) They soon realised he was able to work better if they addressed the sensory issues.

Now trying the Listening Program, just started and so far so good. Seems to be helping him.

Good luck. Happy to correspond.. rjcg07 at hotmail etc

try to find a sensory trained OT and see if they think work on retained reflexes will help.

would agree with mumgoingcrazy that 'therapeutic listening' very helpful. frineds son had to do retained reflexes before could do hte therapeutic listening.

also look at 'treating autism' website - some people find that taking out casein (protein in dairy stuff) and gluten from diet has significant improvement on spinning etc. nb it is not easy to do and the gf cf foods are not cheap. (there was a thread a few days ago about gluten free casein free diet - have a look for it)

sorry - had not read your post properly...

OT giving sensory diet will be very helpful, and also noted that you said your son not autistic, so treating autism webstie may not be relevant.
(will read next time before writing.)

Hi Sally, my ds 6 has a diagnosis of sensory modulation disorder, which is a sub of sensory processing disorder. SMD is not an official diagnosis in this Country and its classed as sensory modulation dysfunction.

He has a combination of over/under responsive and sensory seeking in all of his senses. We have a sensory diet and an exercise program and i can see an improvement in as much as he doesnt feel the need to crash into things as much as he used to and is a lot calmer. Some of the strategies come in useful when ds gets over excited and starts running around and screeching like a monkey!

Glad to hear you have some practical help for your ds so young.

Hi, apologies for steering clear of this. My son has severe problems in all 8 areas. I have a list of activities etc that can help. However just haven't helped my son.
I also just want to say Hi to MGC, Tclanger and improvingslowly (from threads long ago lol).
Just thought I would add we have been doing the listening programme....which has changed him but not for the better in certain areas.
Thinking of you all. Take care x

i'm probably the wrong person to be giving out sleep "advice" but i'll give a bit more information about our experience. From about 18 months ds was very difficult to settle. As I said, we would lie beside him for anything up to two hours for nap time and bedtime to settle and calm him. he did not seem to have these mechanisms inbuilt and would lie "buzzing" until he finally dropped off.

we realised naps were counter productive at about age 2 and had more success with getting him to settle more quickly (up to half an hour)after we dropped the day time nap.

during this time, and until 3 - 3.6 years old ds always woke through the night and came to our bed and we allowed him to sleep there.

i think starting nursery was the thing that really helped ds as he was genuinely tired at the end of the day and found it easier to sleep by himself. now at 4, he sleeps through the night and can self-settle, although we do have a long winding down time when we cuddle on the couch to help him calm at the end of the day.

i do wish that we'd tried a weighted blanket during the times that we had most difficulty with ds's sleep, as some people have found them useful in giving dcs the pressure that they need, and that we ended up providing ourselves by lying next to him.

Sally sorry have been offline for a while - busy week!! We have OT input as DS2 at SN school so they use various sensory options there including weighted blanket and vest, deep pressure massage etc. I think there has been a little improvement but he is still very active and sensory seeking. He is currently in the process of diagnosis for ADHD as well so sometimes it is all in the mix and it is hard to know where one difficulty contributes and another doesn't IYSWIM!! We have also had our boys on gf/cf diet for about eight months - i see a big change in DS1 (who is also autistic but not as severe as DS2) - very little change with DS2 I am afraid. It might be worth a try though - as others have said, its not really too difficult but it is a little expensive.

Sally I asked the question privately if SPD could stand alone from ASD and both the course leaders said it could but was very rare. So this may be why you're not getting much information or support for SPD itself.

It was an interesting session and gave a broad outline but I don't think there was anything specific that would be new to anyone with an understanding of SPD.

I didn't know about the vestibular sense or proprioception which explain DS' unusual behaviours. Will be getting some Chew'lery too if that helps anyone who also has a child who chews clothes!

Hi, if my DP is about later I may get him to come on here. He has SPD.

Have had an ok day with Harry. He slept through last night - from 7 - 6. It was so lovely - the difference a decent nights sleep makes is huge!

Went to Play Group this morning - this is normally quite stressful and we normally leave after an hour because I'm exhausted. Today we stayed for the whole session and Harry was really good. He even interacted with a little boy a little bit which was a first.

I am beginning to really think about Harry's eating - or lack of it. He used to be ok but is now shocking. For breakfast he has a bottle and one weetabix - will sometimes eat it all. For lunch may be a ham sandwich - the ham has to be seperate - he never finishes it all. He will hardly ever eat his tea. I did home made steak pie tonight with vegetables - he looked at it and got down from the table. He didn't eat a thing. He ended up eating a yogurt. During the day he may have some grapes or the odd banana or a bit of chocolate. Its getting to the point where he hardly eats anything. I don't know whether I should be strict and tell him that thats his tea and if he doesn't eat it there is nothing else. This worries me because I don't know whether he would understand. I take the view that whatever he will eat is better than nothing. Do I need to be tougher?

Still not yet received the Sensory Diet - hoping that I will get it by the end of the wweek. Just want to start it -need to feel like I am doing something.

Sally