Sunday, 31 August 2008

Goodbye Paddypaws.

Paddypaws with his bright blue eyes.

I am so sad today. Yesterday my parents had to have one of their 20 week old kittens put to sleep. Poor little Paddypaws was struggling to breathe when I woke up yesterday and his respirations were going at 80 per minute.

An emergency appointment with the vet told us that Paddy was indeed a very sick kitten. An X Ray showed an enlarged heart, liver and kidneys. This left no option but to try and remove the fluid under an anaesthetic. The best case scenario was a massive infection - the worst a massive heart defect. Sadly the latter proved to be the case and Paddy was put to sleep without ever waking again, a victim it appears of HCM (Hypertrophic Cardiomyopathy).

Bless you Paddy - at the Rainbow Bridge with Grace and Spike. We won't ever forget you.

Tuesday, 26 August 2008

The Accident and Emergency Department.

Accident and Emergency Departments - not anybody's idea of a fun few hours are they? But today I was unlucky enough to spend a few hours there. I had just finished my morning visits at work and was looking forward to a sandwich before starting the Well Baby clinic due from 1.30pm. I got back to the Health Centre to be told that my Mum, Dad, Sister and Niece had all left messages for me. J had fallen off some climbing equipment at the local park and my parents had taken him to A+E.

Anticipating "the worst" as every mother probably does in that situation I rushed to Basildon Hospital's A+E. I need not have feared – as I tore breathlessly through the door J's happy shout of "here's my Mummy" reassured me that he was not about to die. In fact J looked in the best of health apart from some massive bruising to the side of his face (oh boy – is he going to have a black eye), his back and shins. He looked in fact, far better than either of my parents who were ashen faced, anxious and upset that the accident had occurred while J was in their care. Bless my Mum who apologised again and again – but really there was no need. I'd much rather J was having fun with the minor possibility of an accident rather than sat bored indoors because Nanny and Grand-dad were too frightened he might injure himself.

As far as J's SPD goes - let's just say he explored every inch of A+E available to him! Finally, in hope of occupying him I walked him up and down a long corridor several times until his name was called. J then excelled himself by co-operating fully with the hospital doctor who examined him and was rewarded with a trip to the toy shop afterwards.

Not surprisingly J is a bit subdued now and has a few aches and pains. However, he is fine – no breaks, no concussion – just a few bruises which he will recover from.

Monday, 18 August 2008

Tropical Wings

We visited Tropical Wings at South Woodham Ferrars

We saw beautiful flowers....

... and butterflies

.. a cockatoo...

... some very fancy chickens...

We saw Giant Tortoises....

... and J tried out being a tortoise.

Wednesday, 13 August 2008

J and his Vestibular Sense.

One of the senses J has problems with is his vestibular sense. The vestibular sense is tied up with the inner ear - the rather beautiful structure of which can be seen above. The inner ear is comprised of :

Three fluid filled semi-circular canals,
The vestibule
The cochlea
( shell shaped and the source for "can I have a word in your "shell like")


The semi-circular canals contain tiny sensitive hair cells which detect movement and changes in the position of your head.
This information is conveyed by the motion of fluid within the semi circular canals. As we move the motion of the fluid causes gelatin like lumps called cupulas to bend one way or the other, which in turn causes the hair cells to bend. The three semi circular canals are oriented at roughly 90ยบ to each other, and so give you information in all three dimensions. So, if you were to close your eyes for a moment and tip your head back, you would know that your head is tilted even without having the visual input because your vestibular system provides that information.


If a child's vestibular system doesn't develop or integrate normally, they may be hypersensitive or hyposensitive to vestibular stimulation. If they are hypersensitive then they may have fearful reactions to ordinary childhood activities such as swinging on swings, running or jumping. On the other hand if a child is hyposensitive to vestibular stimulation (like J) they may well be constantly on the move in order to sense where they are in relationship to gravity. This explains to me why J sits and rocks at times while watching the television - the constant movement tells him where he is in space and gravity.

So in the normal course of events if you tip your head back with your eyes closed - you know where you are. J would experience this differently - he might wobble and become unbalanced when trying to perform such a task. In the same way I equally struggle with tasks like these. In relaxation exercises which ask for eyes to be closed I have to be seated on a chair or on the floor - standing with eyes closed does not come naturally and I feel unbalanced (and have been told I sway alarmingly). I guess I have SPD too - or have adapted to the SPD I had as a child. In the 1970s SPD wasn't known about in the UK - the best the various people who saw me (at the advice of teachers who were concerned about my activity levels and writing) could advise my Mum was that "children like your daughter have different brainwave patterns to other children"! J is a carbon copy of me according to my Mum so I have had several "lightbulb" moments with my reading about SPD and guess my vestibular system is not the best either.

When I observe J I am aware of a great deal of movement, even when he is seemingly stationary and concentrating upon a task there is activity. So sitting watching the television involves a regular need to move around or rock. This gives vital information to his brain about where his body is in space. I think that this is when I see J's vestibular problems most clearly as he unconsciously rocks. Likewise sitting at the computer involves standing up, sitting down, hopping from one foot to another, wriggling as well as opening and closing his mouth. During this time he may be completely zoned out and speaking to him will elicit no response. Interruption - either because the computer does something unexpected or an adult tells him it's time to come off the computer often elicits an aggressive response (usually a tantrum) but at school he cries.

I am watching J at the moment - he is actively playing, running up and down (a tiny 2 bed mobile home), dancing to music, rolling on the floor, jumping and spinning - totally active and stopping every now and then to observe himself in the reflective glass of the turned off television. He has a toy golf set which is being used as anything except a golf set - the golf clubs are "an axe" and he is "chopping down trees", they are "guns" and he is a "goody chasing after the baddies" - all normal stuff in fact. Now he is dancing again to Coldplay's new album and walking round and round in circles - enjoying the momentary dizziness although he tells me that "sometimes I don't get dizzy". A bit like a Great Dane J needs a good walk or run twice a day to help him use the pent up energy - if he doesn't have this he is quite impossible at bedtime!

So I await the results of Sensory Integration Therapy to see how I can support J and help him with overcoming the problems his vestibular sense causes him on a day to day basis. I will also be interested to see if there is improvement in the activity levels.
I have spoken to Lara - we begin on 1st September....

Monday, 11 August 2008

Lara’s Occupational Therapy Report

Lara's report is very thorough and notes that J "has definite sensory processing difficulties" and that "he also has difficulty with modulation (facilitation or inhibition of responses) of body position and movement, activity level and emotional responses. His behavioural and emotional/social responses also differ from other children his age. J's results indicate a mixed profile, however they suggest he is sensory seeking, emotionally reactive and has difficulties with attention and fine motor/perceptual skills".

To be honest I feel relieved - I've long known that J's behaviour was different to that of other children of his age and although I've suspected for some time that the reason was sensory integration disorder, (as proposed by Julia Nile the Foundation Years Advisor in Somerset) it was good to have these suspicions confirmed. On the other hand I also feel like crying – my little boy is struggling in school and is emotionally, behaviourally and socially immature when compared to other children his age. It doesn't take a rocket scientist to know that this cannot be good for his feelings of confidence, self esteem and self worth. He is different - not abnormal but just different; but I don't want him to be different - his life would be far easier if his behaviour and responses were like those of other children his age .... and my life would be easier too.

At the moment J likes everyone and to him everyone is a friend. He is happy to talk to adults and children regardless of where he is or what the situation. To be honest this is sometimes quite wearing; when he gets really over-excited he will literally tell anyone in the vicinity what he is about to do and try to include them in his excitement – more in the manner that a three year old who cannot contain his feelings might. But J is not three - he is approaching six and is also tall for his age – when he gets really over the top with excitement it is hard to contain him. Little wonder that the school have been raising concerns.

For me this raises many anxieties and questions:

  • How will J cope as he gets older if these sensory processing difficulties persist?
  • Will he always be behaviourally, emotionally and socially immature?
  • How will J cope in school as he gets older if his responses remain immature?
  • Is J more likely to fall victim to bullying?
  • Are his sensory problems a sign of other difficulties (e.g Dyslexia).
  • How will I and J's Dad cope as J gets older if the frustrated anger persists?
  • Will the school be supportive?
  • How do I explain J's immature behaviour to other parents in social situations?
  • How do I help J to cope with his problems?

The last question I DO have some answers for as Lara has made some suggestions in her report and has been good enough to do some separate recommendations for the school.

Lara's recommendations:

  • J would benefit from participating in a six week block of Sensory Integration Therapy run by a Paediatric Occupational Therapist with the aim of providing additional movement input and reducing auditory and tactile sensitivity. J's progress would then be reviewed.

  • J would benefit from trialling a sensory cushion (e.g. Disc o Sit) or ball chair to provide him with additional movement input in the classroom. (I can tell anyone reading this that I will NOT choose the Ball chair as my clown of a son would use this as a reason to "fall" off on a regular basis)!

  • Sensory Strategies should be used within the school environment to prevent negative behaviours and improve social skills. (Lara has made some recommendations for the school in helping J)

  • J would benefit from further occupational therapy assessment to determine specific fine motor and visual perceptual difficulties that may be causing him to avoid handwriting tasks.

So my next task is to book Lara for the Sensory Integration Therapy and thank the higher powers that I am in a position to afford private treatment at the moment.

In my next post I will look at one of the senses J has difficulty with. This will help me understand his problems in greater detail.

Friday, 8 August 2008

Butlins..was fantastic.

Butlins was fabulous fun and J had a great time trying out the various activities on offer.

Despite his little quirks which were very apparent at times especially in the presence of noises and sounds he found unbearable we had great fun.

J hears a sound he doesn't like and shows his usual reaction (hands over ears) which is apparently typical of children with sensory processing problems. J has been showing this reaction to certain noises since age 2 years.

Heights are NO problem for J as seen from this photo......

...and even worse this photo of the ride he loved most and on which I was compelled to accompany him due to his age and height.

The best and most favourite activity though was without doubt Splash Waterworld pictured below (courtesy of Butlin's website - better say I nicked it from there in case I am infringing any copyright)! Believe me it was nowhere near this empty during our stay Check out the boat going down the chute.

J and I went to Waterworld every day and queued for 40 mins+ each time just to get in the door. The pool was obviously, a heaving mass of humanity but had to be endured as J enjoyed it so much.

Splash Waterworld has a feature called The Master-blaster which is a chute with various twists; turns and what seem like vertical slopes. You ride through the chute on an inflatable boat and have to be 8 to qualify for it. Of course if you are under 8 and want to ride it (like J) then you have to take a suitable adult (that means Mug Mum) with you. After a 30+ minute wait you finally reach the front of the queue and climb in the boat with Mum sitting in the back.

“Don’t worry” said the Lifeguard with a reassuring smile the first time we climbed aboard, “if the boat stops en route just stay put and we’ll come and rescue you”! With this our boat was hauled to the edge of what seemed to me like a steep (vertical) drop and off we went.

J absolutely LOVED it and we did The Master-blaster again and again (complete with long queue). Our best time was 37.58 seconds and our worst 50.39 seconds. Competitive - moi?

Much of the time though was spent in the pool which was full of children with their parents who were mainly BBs and BBs (that’s Big Birds and Big Blokes). So J’s Daddy (who uses his weight as an excuse to NOT go into the swimming pool) will be made to attend next time so that he too can experience the heaving masses. Maybe he’ll enjoy The Master-blaster too – or how about the massive slide which J comes down in all manner of positions and with seemingly no sense of danger?

I have to confess to rather enjoying the slide myself – not as much as the Jacuzzi though – even J enjoyed that. I have to thank J here for finding 5 minutes of fascination with the Jacuzzi which allowed me to sit in blissful relaxation for that time before being hauled off to join the queue for The Master-blaster once more.

So we are home...and Lara’s report is here of which I will report more once I’ve had time to read and digest it. In the meantime here are a few more pictures of Butlins.

J enjoys the bike track - but at £1 a go he didn't spend too much time here much to his disgust,

The Merry Go Round was FREE though.

Thursday was a beautiful day and J spent time playing in the wooden play area pictured to the back of this photo. Meanwhile Mummy.....

...drank some Vodka but at £3.25 a bottle couldn't afford to get drunk!

Monday, 4 August 2008

We're all going on a Summer Holiday.

Okay - am packing so this will be quick.

J is sitting at the table using the Laptop - very brave of me as he is sometimes a bit OTT with this as well. I am watching him now - rocking, swinging his feet, standing up, sitting down - totally absorbed in what he is doing and completely zoned out. If I tried to ask him a question now there would be no response.

So packing for J

4 days away so - ummm - 2 pairs of pants per day. J is too absorbed in what he's doing sometimes and "forgets" or "hasn't got time" to go to the loo with the inevitable results. My son - lazy - never.

My thought for the day - not to let SPD cloud my judgement of J - sometimes he is just an openly defiant and naughty little boy - reassuringly normal in fact.

Today he is sooo excited about going on holiday - we are off after lunch and I am guessing that we will be trying out the Waterworld soon after arrival.

Butlins here we come....

Sunday, 3 August 2008

Butlins and some anxieties...

Tomorrow J and I are off to Butlins at Bognor Regis on the West Sussex coast. This is hardly the Seychelles but for J it will be heaven. J and I are going alone as his Dad has to work during next week so cannot join us. This means that I will have to develop the proverbial "eyes in the back of my head" with J whose senses will be overwhelmed by all the new sights, sounds and sensations.

My main anxiety is other children. J loves being with other children and enjoys actively trying to make friends. However, because J is fairly sensitive to touch it means that he can sometimes be "over the top" during play. On occasions this has meant that other children have found him rough - even though he has not meant to be. J struggles with waiting his turn although he is starting to develop more awareness of this. However, it still remains a problem at times - when Lara (our OT) observed him in school she noticed an occasion in the school playground where J pushed his way past another child to get onto the climbing frame first. Not surprisingly that child retaliated by pushing J off the climbing frame - cue tears and a need for reassurance. What Lara felt though was that J had been completely unaware of what he had done and was therefore unable to comprehend the actions of the other child.

Likewise today I took J to an indoor soft play warehouse. With his need for movement and some obvious pent up energy I thought a blast around the play equipment would be helpful. Off we went and at 9.30am were the first customers of the day. Some minutes later a family arrived with two children - one of whom was having a birthday party at the venue. Over the next 30 minutes many more children arrived and J was in heaven with lots of prospective playmates.

Several times I heard the birthday girl begin crying having been pushed past, knocked over etc etc. Although I did not see J actually do any of these things due to the difficulty of seeing through the gaps in various equipment I am quite aware that at times he simply does not realise that he's pushing past, pushing, being rough etc, so I began to keep an observant eye on proceedings - as did the birthday girl's Mum. A few moments later J came down the big slide and was approached by the birthday girl's Mum. Now birthday girl's Mum was perfectly nice to J and just said "I hope you're not making my little girl cry because it's her birthday today and we have to be nice to people on their birthday". J denied that he had made her cry and then ran off to another bit of equipment. I felt uneasy and started watching even more closely but J stayed away from the birthday girl after this. However, some 20 minutes later I heard birthday girl dissolve into tears again - now J was nowhere near her at this point and she pointed out another little boy as having upset her. Nevertheless within moments J was by my side and saying "I'm scared and I want to go home". I asked J why he was scared but he couldn't say - later when we were in the car he said that he was "frightened because the little girl was crying" and "I thought I had hurt her".
Such is the effect his SPD has on him that he evidently feels that even if he's not aware of it - sometimes he upsets people. I feel sad about this as he is such a friendly little boy who loves other children - I worry that this open friendly approach to other children will be lost along with self esteem.

So - understandably I am nervous about the holiday but excited too. J will have such fun - and some one to one time with his Mum who loves him the most in the world. I plan on taking him swimming every day as he loves being in the water and also to the fitness sessions - there is even football coaching if he wants to do this.

More than anything else though I am looking forward to just cuddling up with him at night. We took a late booking and the room we have only has a double bed - just big enough for J and me, some popcorn and the portable DVD player.

When we return there will be Lara's report and then probably some private individual OT sessions along with some techniques we can put into practice at home. All these things will - I hope - help J as he goes into the next school year.

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.