Friday, 1 August 2008

Sensory Processing Delay.

My son has Sensory Processing Delay - many people have never heard of it and neither had I before the term was raised by the Foundation Years Advisor when he was 4 years old.

J was always what is known as "a handful". Shopping has always been an utter nightmare with him as he will run in all directions - hanging on to him is difficult. I've lost count of the number of shopping trips abandoned because I lost patience or couldn't cope. There were other issues as well. - J dribbled excessively until well beyond the age other children stopped. His passport photo is a dream - it shows him with his customary soaked top. I used a bib for a long while but eventually had to stop as at Nursery no other child was wearing one - and at age 3 J was really too old for one too. So I just kept the bibs for home and carried several spare tops with me for when we were out. I sent J to nursery with 2 changes of clothes and plenty of cleaning wipes.

Food was another issue - not for me the faddy eater - J has always been an absolute delight with his willingness to try different foods. However, what a mess he got into - and still does.

Have I mentioned the headbanging? J was a world champion - anger, frustration or just sheer boredom would have him kneeling on the floor banging his forehead. It became a big problem at nursery - I collected him one memorable day to be told "J has banged his head on the floor 13 times today". The headbanging had always been something of a mystery to me - I knew some children did this and I did all the right things in ignore, ignore, ignore. J got absolutely no reward for his headbanging - nothing that should encourage him to continue and yet he did. I consulted the wonderful "Toddler Taming" by Dr Christopher Green. "Headbanging" it said, "ignore it" (I did) and "it will be well away by age two". Hah! He evidently hasn't met my son whose headbanging persisted well beyond age 4 and still makes the occasional appearance at age 5!

At age 4 J was preparing for school - his Nursery who were always fantastic with all their children had arranged something special - a visitor with several Owls. This visitor attended on a day when J would not usually go but I attended with him as I thought he might enjoy seeing such big birds. I have one or two photos of J with the Owls but in the main spent the time trying to keep up with him and bring him back to the main event - it was not easy. J was, in fact, all over the place - running around, climbing - totally unable to maintain attention for more than a few moments on the Owls. All the other children (and I do mean ALL the other children) were crowded round watching the Owls, talking to the handler and maintaining concentration.

It was after this that I was approached by the Nursery's SENCO (Special Educational Needs Co-Ordinator) to say that they felt J could do with being assessed by the Foundation Years Advisor. I was mortified - J to me was just J with all his little foibles and behaviours. Now I felt that people were noting abnormal behaviours I felt horrendous. Why hadn't I noticed that collectively they were concerning? But I didn't - J was my first child and to me he was just J - the behaviours I felt would improve as he got older.

J was seen by a nice lady called Julia - Julia was good enough to phone me later in the day. She was kind, positive and more importantly practical. She had seen J, assessed him and drawn up a plan of action with the Nursery. She would re-assess him in 3 months time.

I asked her what she had thought. Until that point all manner of things had been going through my head - ADHD, Dyspraxia etc. So I was surprised when she said "sensory processing delay". I had never heard of it. Neither had any of my colleagues.

As a Health Visitor I am fortunate enough to have access to information at my fingertips. However, I could find nothing about SPD - until I looked on the web. Pages and pages of info - virtually all American came up.

I read the behaviours associated with SPD - it was like a description of J.

* Impulsive. (Oh yes)!
* Poor attention span. (Hmmm)!
* Lack of concentration. (Yes)
* Poor tolerance of certain sounds, sights or smells. (It is virtually impossible to get J to wash his hands in a Public toilet if there is a hand-dryer).
* Unusally active or inactive. (Just try getting my son to sit still - even when his concentration is taken he is still moving).
* Poor tolerance of some grooming procedures eg hair cutting or washing. (J is a nightmare when it comes to hair cutting - it's easier now but still difficult).
* Poor fine motor skills (J still holds a pen/pencil with an immature palmer grip).

Yesterday an Occupational Therapist came to see J. I have been waiting a long time for J to have an appointment with an OT. The local area has a 12-18 month waiting list and I was on this list with J. With luck his appointment would be June 2009!

Two weeks ago though I went in to his school for a parent's evening. It was not good - the school have been fantastic but are having problems with J. What came to light though is that J is crying every time they ask him to come and write. I asked J very gently about this. "Do you like doing writing at school"? Back came the reply "No because I'm not any good at it". Bless him - at 5 years old he is already losing confidence.

No way could I leave it until an NHS OT could see him in 12 months time - I needed to do something now.

Thankfully I have access to the internet and found a register listing Independent Occupational Therapists. I was fortunate enough to find one who lives driving distance away and rang her.
She (Lara) has now observed J in school and visited him at home. Lara has no doubt about J having SPD and is now writing a report and designing a treatment plan for J. It's cost me £300 and I am fortunate enough to be in a position to pay this at present. Further sessions are £50 an hour and I may well pay for them if it will help J.

Lara noted lots of things - but especially that J's body "craves movement" - we both watched J watching the TV during Lara's visit and rocking back and forth the whole time.

Lara also noted that the sounds which J finds hard to tolerate are low level sounds probably present in various forms throughout his school day - no wonder he is hard to settle at times.

From her observations in school Lara noted that J "sat on his knees" during story time - the only child to do so. Lara says that children with SPD who crave movement often do this sub-consciously because it allows them further movement.

Currently I am reading a book called The Out of Sync Child" which is all about SPD, how to recognise it and more importantly how to help a child affected by it. This has been a fantastic help and a really good guide about what may help J. Most positively it has given me hope for J that he is likely to grow out of this as he gets older - my job as his Mum is to make sure he has all the help he needs in the meantime to stop him losing all confidence in himself - occupational therapy will help that.

I will post more about this - writing this down has been helpful. Who knows - maybe other British parents with a child like J will type in "Sensory Processing Delay" and surf on in to find they are not the only parents in Britain with a child who does all the things peculiar to this disorder.


Carol said...

England is beginning to awaken to SPD, I'm glad to say. Sue Stephenson, Paediatric OT in Newcastle-upon-Tyne, has invited me to present a 12-hour course, November 3-4. If you are close to Newcastle, perhaps you could join us. The organization is Kids Therapy. Her e-mail is

Best wishes,
Carol Kranowitz

Life's rich tapestry said...

Many thanks Carol - sadly I am too far away to attend.
I am finding the (your) book a really helpful support though. My little guy is going to be fine with the input he will get through the OT and school.
England is beginning to wake up and I am noting it in children I see during the course of my own work so am beginning to "spread the word".
Thank you for reading the blog


heart rumbles said...

My son is a teen now and still has some sensory problems. Still he has outgrown a lot of them. The OT and the various exercises they suggested really did help. Hang in there and remain proactive. You both are fortunate to have each other.