Month: October 2015

Jasmine’s balance and co-ordination was a problem for her from the beginning and it became very evident when she started riding her tricycle at age 3. She had become quite competent on her plastic three wheel ride-on, but on the trike she immediately struggled with peddling and steering. Pushing down with one foot, and the resultant pressure on the steering, was confusing to her and she preferred to scoot while standing on the back of the trike.  This resulted in her many crashes and for a while she became fearful and discouraged. Even pulling her along with a rope was not satisfactory and things did not seem to be improving.  As with the logs (Walking the Logs), we felt that it was important to stimulate her balance and co-ordination as much as could safely be done. So, contrary to negative feedback from all and sundry regarding special needs children and cycling, it was decided to try to teach her to ride a bike. There were the obvious dangers associated with this activity and we decided on a cautious approach by using training wheels on her new pink bike which had back pedal brakes. (She did not have the hand coordination or the strength to use hand brakes.)

Any cut, abrasion or bruise was a massive sensory disaster for her and so we became ultra- cautious in our approach. A safety helmet was a must, but her strong sensory aversion to anything touching her head delayed things until she could tolerate it. Training wheels were used for a long time, in fact for two successive bikes, but try as she might, she could not master the art of balance. We went for long walks and rides, uphill and down dale but it was a continual struggle. It was too easy for her to just lean sideways to engage the outside training wheel and so she did not correctly develop her balance. After many months of effort we saw a small child on a wooden ‘scoot-bike’, and the penny dropped—AHA!  We immediately removed the pedals and chain from the smaller bike, lowered the saddle and went back to square one with her practice.

The flat surface of a tennis court and driveway proved to be the answer and we spent hours scooting back and forth, with her slowly lifting her feet and gliding longer and longer distances, and her confidence kept growing.

On those all too frequent ‘out of sync’ mornings, after a bad night, when her balance was compromised and her focal seizures (which we only realised later were occurring) were interfering with her progress, we had to take it slow and easy. We would go on breakfast picnics alongside the pathways and under trees to allow her the time to wake up and gain her self-control. When it came to biking, it seemed (as with the swimming), the physical activity and movement seemed to calm her down. It was as if she was always keen to develop her sense of balance and test the challenges of gravity and was happy to accept the small incremental advances she made, and have a go at it. Most times she was very tentative as she was very afraid of falling, but the tasks we set up, such as following the painted lines on the court, zig zagging, and following a figure 8 drawn chalk line (which was very difficult for her as it crosses the brain midline), were repeatedly attempted.

During all this time she was also doing many other physical activities to develop balance and co-ordination, such as walking on the logs (Walking the Logs), balance beam and climbing up trees, trampoline, catching a ball etc. which seemed to be installing the necessary sensory building blocks for the much more complicated sensory problems to be confronted whilst riding a bike. It was important for her to know her own bodies’ position in space to be able to correct herself before falling, and, as if she knew what was good for her, she was prepared to gamely try most tasks given to her.

Eventually the big day came when we decided to let her ride her bigger bike without the training wheels. We decided to take her to the beach for her first ride.  We waited for a morning after she had had a reasonable sleep and explained to her what she was going to do, and she was keen. So, off we went to the beach at low tide and for half an hour we practiced falling and rolling on the hard sand in a rough and tumble game to prepare her in case she fell off her bike.

Then she was off – with me running along behind her, holding the saddle to balance her, peddling along towards the safety of Carol…

… and then I let her go and ran along beside her.

Her look of amazement and joy, and her delighted happy squeal, when she realised that she was riding by herself, made all the effort worthwhile!

Then came the stopping part when she forgot to put her feet down and promptly fell over on the sand. No big deal, she was up and ready again. She persisted and persisted, and only stopped when Carol and I were exhausted.

Over the next few months we all rode together on the beach and practiced all the things she had learnt on the training bikes. We then honed our skills by having skidding competitions, ‘follow my leader’, figure 8, and Jaz riding in front training her to not look backwards, and then came the emergency stops on command! She was liberated and was so pleased with herself. This was another Island Of Success for her.

Once she had mastered the small bike, she graduated to a bigger bike, and then to a bike with 3 gears, but still back pedal brakes.

A long period of adjustment took place with all of the previous exercises being repeated. Of course bike riding was more fun than anything academic, so we adapted to ‘bike school’ sessions where we would take our chalk, and other academic material, stop and do sidewalk drawing, speech or fun maths etc. All one big fun game!

After many cross country practice sessions to acclimatise her to riding along a path, we felt she was ready to join in on a forest trail ride with the school.  With about 30 kids in her age group, we tackled a very hilly trail and, as we were unsure ourselves, we set off at the rear of the group, easily completing the ride.  She even stopped to help others who could not cope! She was very proud of herself and, of course, we were so proud of her too.

Once she was completely comfortable with the riding skills she had attained,  we set more difficult tasks for her, such as skidding on concrete and gravel, tricks such as riding with feet akimbo, one hand then the other, stand up peddling, changing gears, tooting the horn, zigzagging, riding on bike trails and BMX courses, up and over a ramp, always after a lesson to show her how to do it, and then practising it over and over.

Most advances came from her being shown what we wanted her to achieve first and then repetitively practised. It seemed as if the messages from brain to her body parts were reversed, left seemed right, up seemed down and front seemed back and of course, any consequences were dangerous anomalies which magnified the pitfalls of cycling. Everything had to be practised many times first before she ‘got it’; and in fact all later exercises in other areas of her development (still to be discussed), proved that repetition, repetition, repetition was the order of the day with her.

There was one incident that happened while cycling down a grassy hill on one of our rambles, which is still of grave concern to us, and one on which we have been since working to prevent. On the decent she seemed to freeze and was unable to do anything about it and landed upside down in a creek full of water – luckily she wasn’t injured! Since then, we have been mindful of that incident and have tried to take the necessary precautions to prevent a recurrence. Any downhills are now taken very, very, cautiously. We think that we have found an explanation of her behaviour, and the cause thereof, and it will be discussed in detail in an upcoming blog, along with the corrective measures we are taking to overcome this issue. This important task will be shown on a video.

This year she has achieved another Island of Success and is able to cycle, with her backpack schoolbag, on her own, along a secure pathway (a distance of about one kilometre), to our home for her school lessons (with mum watching anxiously until she is out of sight, and us watching for her arrival, phone in hand)!  This confidence and new found independence is a huge milestone for her. Of course all the normal safety precautions are being taken. She also goes on long family rides with her siblings.

Our current practice sessions involve teaching her to use hand brakes, down- hill riding, and road / pavement rules and emergency situations, and for Jaz its practice, practice, and more practice and then practice again!   After all it’s not as easy as falling off a bike you know!

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We soon realised that Jaz’s main senses were compromised and that she had many sensory overloads.  The five main senses from the outside of her body were all badly affected as they all, in one form or another, resulted in her vomiting when they were over stimulated. She vomited easily in response to a sensory overload of an individual, or a combination, of her senses.  Under certain circumstances, she still does it today, but due to her hard work, she now shows much more self-control.  The sensations she experiences are a brain-sensory type of knee-jerk instinctive response to some kind of stimulus, and for her it is very difficult to quell these powerful impulses. She struggled with for example:

• SMELL- walking past a public toilet and even smelling the antiseptic used to clean it, caused her to vomit.
• TASTE – an unfamiliar taste could easily trigger the big V.
• SIGHT – even the sight of a cow pat, doggie turd or a brown smear could trigger the big V.
• TOUCH – the feel of something soft mushy or gooey, between toes or fingers could produce the undesired response, as could certain food textures.  She could not clasp her hands by interlocking the fingers, neither could she put her fingers to fingers nor even bear the slightest touch to the palms of her hands.
• SOUND – toilet noises or regurgitating sounds could also cause her to throw up. Even sudden loud noises would cause her to get a fright and she would feel nauseous afterwards.

In addition to these external sensory issues that she had to contend with,  her internal senses, she used to monitor herself with, were not easy to manage.  For her, a full bowel, stomach gripes, headaches or feeling unwell etc. had a profound effect on her well-being.  We can only begin to imagine her preoccupation with all of these issues and her resultant confusion in trying to behave (by our standards) ‘normally’.  Just imagine the immense effort it takes to try and control these variables on a daily basis.  Things that we take as a matter of course, were, and still are, incredibly difficult for her.  By comparison, I remember that when I was 8, I became ill after eating mushrooms and it took 30 years for me to even try tasting them again!  Put this into perspective, and you can say that she controls her sensory anomalies probably many times a day, the same ones possibly over and over, while it took me a (supposedly) ‘normal’ person, 30 years to do this. Who then has the greater internal fortitude?  I know…. JAZ!

There were other sensory issues as well:

• TOUCH – for her, anything hot appears scalding, warm is hot. Baths for her have to be tepid and her food is only eaten almost cold. Cold can also affect her as though she is touching something hot.  Sharp is extremely sharp and a pin or needle became a potentially incredible pain to be avoided; and a prickly object was a thing to be feared. Her feet were so sensitive that walking on the warm beach, required special beach shoes, while a shell cut toe would keep her out of the water for weeks. A cut finger or bumped hand, or a sore toe, needs a sock on it. Cutting with scissors or working with hot melt glue produced visions of blood and blisters. An insect bite would result in a night with no sleep for her and her mother as she itched and scratched all night.

Pain or the threat of injury, seems to “light up” her sensory pathways – which is not difficult to understand considering they are all brain linked anyway.

• TASTE – Pasta, cheese, butter, mayonnaise and ice cream, because of their blandness, became her staple diet – not any cheese of course, blue cheese was abhorrent as it smelt and looked horrid. Watered dilute juice became the preferred drink.

Hours of make-belief games, pretending that she was a cat or puppy, became the daily practice routine for months and months to enable her to swallow her tablet medication without her gagging. (Tablets were preferable to liquid medication as the liquid tasted horrible to her, and she would almost always, vomit it up).  Occasionally the tablet giver actually had to pretend to swallow the same meds, as an example to her, whilst teaching the nose holding technique! (She even checked sometimes that one had actually swallowed them before she believed one!)

• SMELL – Clothes, shoes, blankets and toilets had to be kept clean with absolutely no offensive odour present.
• SOUND – Jaz was unable to wear ear muffs, ear phones or ear plugs at all.
• SIGHT – The sight of butterflies moths, bees, flies, praying mantis, worms, bugs, dogs, cats and birds etc. could easily result in immediate hysteria – it was really concerning for all.
• VISUAL – Our attempts to give her “visual sense control” is the subject of another chapter.  Suffice to say that Jaz took a huge step forward in her self- control when we did this and hopefully this may help with the looming possibility of dyslexia.

What did we do?

We realised that the answer was to try to teach her a self- control technique mechanism. This was to touch her nose and hold her breath when she needed to overcome fear or a sensory overload.  This was tried and practised repeatedly as a fun game, always with laughter and joking to distract her from her fears and the sensory overload.  Then every time a dog or cat, or any animal approached, or an obstacle needed to be negotiated, or a bee or fly landed nearby or an unpleasant smell was encountered, it was “CONCENTRATE JAZ” and the nose would be touched and a big breath taken.  Slowly it began to work and she began to gain control, but it took a long time to master, until today when her enduring problem (toilet smell related) still remains, but she is slowly winning this one – no quick fix here!

 

We also went walkabout and looked for dog and cow poos, at first only standing and looking from a safe distance, then, when she could handle that, approaching for a closer look. Then we tried the pretend stuff, tricking and fooling each other with pseudo look alike turds, twigs or clay. “Open this box Jaz”!  ha ha!”  Then she would do the same to someone else with much shuddering and touching of the nose, and of course, laughter!  After that came the “whoopee” cushion and a ghastly game played with a very realistic fake plastic dog turd that caused me to do a double-take more than once, I tell you!  Always fun and hilarity, always a game.

We also spent many hours hunting worms in the garden.  During the ‘worm hunt game’ we collected worms from the garden, and then picked them up with a shudder and a squeal and put them in the smelly compost bin.  We would slowly get her to partake in the ‘worm hunt’ game, each step a baby step closer to her picking up the worms and putting them in the compost bin herself.  Every time she managed to master a particular challenge, we would set the bar a little bit higher for her.

 

Her urgent toilet calls were a huge problem and she could never even get close to a public toilet.  As an interim measure, we made 3 ‘portaloos’ out of 10ltr plastic paint buckets, plastic toilet seats and plastic ‘doggiedoo’ bags. These were carted around in our cars and proved to be very popular with her.  She enjoyed the fresh air with no smell and it resulted in a little girl who was visibly less anxious about going out, with her frequently checking for her ‘portaloo’ in the back of the car.  In fact it gained significant precedence over the home toilets for a while!  During this time of ‘fondness for open air loos’ I can clearly remember a day in the park when Jaz was caught short while playing on the swings close to where a ‘young mothers with babies’ fitness class was taking place. After her open air toiletry was completed (behind a bush, of course), we turned around only to find the ladies had hastily vacated the area, prams and all –  you would think that young mothers would have a bit  more understanding and tolerance!

Through fun, games, hard work, persistence and a will to prevail, Jaz has added some more positive islands to her “Islands of Success Journey”.

Some of them are:

• Taste Island – Jaz can now take all of her medical capsules and tablets by herself without gagging. She is able to taste, albeit with caution, unknown food. Able to chew gum. Able to make a glug noise when drinking!
• Touch Island – Jaz is able to cut with scissors, cut with a knife, use computer mouse and touch pad, click her fingers, do up her jumper zipper, use the low melt hot glue gun, use a fork and use an electric toothbrush around lips, cheeks, chin and nose while doing control exercises. She sometimes even allows us to brush her hair without complaint.
• Smell Island – Jaz has made big advances towards controlling her fear of vomiting and also her other reflex triggered responses. She is able, with caution, to now use a clean public loo.
• Sound Island – She is able to wear ear muffs and headphones; is able to copy speech while out of sight of the talker and is able to follow verbal instructions. She laughs at rude noises and can use the telephone. She also listens to music.
• Sight Island – Jaz thinks in picture form not language or word form, so our reading challenges are to control (slow down?) eye movements, enough for her to be able to see individual letters on a line on a page and to sequentially convert them into words, as opposed to reading with a big picture approach. At this stage she can do 30 piece picture puzzles, play card games such as rummy and old maid, card memory games, Reading Eggs, online educational game apps and play Xbox interactive games. She tolerates butterflies, can handle a bird and even allow a bug to sit on her hand, and has her own cat. All this will be discussed more fully in a later blog.

Jaz’s sensory difficulties are the result of a neurological disorder.  Our struggle is in trying to help her organise her nervous system, (if possible), and improve her self-control. At the very least, we hope this helps her to feel better about herself, and grow her self-confidence and self-esteem. Her Islands of Success within her sensory domain are growing, but she is fully aware of her shortcomings. She cries when she thinks she should have done better and hits herself on her head as if to say “C’mon Jaz, get control!”

When she is tired from broken sleep, she struggles more with sensory overloads and often feels ‘wobbly’ and nauseous.  When she feels like this she constantly deflects and diverts attention away from herself in order to maintain her dignity and equilibrium.  When I get frustrated with her, I think back to my own mushroom saga, and I immediately change my attitude and realise that I am the one that needs to be more understanding!  After all, with all the sensory issues she is coping with in any given moment, who can blame her for needing to move around and deflect the attention away from herself?

Her willingness to always partake in a fun lesson, even when she is struggling to keep up and communicate and talk, never ceases to be a humbling example to me, and, hopefully, to us all.

It’s all so hard for her!  How easy have we got it, huh?

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