Our Journey With Jaz

During 2017 Jasmine started changing her eating habits, slowly consuming progressively smaller meals.  Throughout her life she had always preferred pasta and cheese for breakfast, followed by ice cream later in the day, to most other foods.  During the latter half of the year we started noticing a worrying development, with her obsessively demanding an early morning ice-cream Coke float from McDonalds.  We didn’t know what else to do other than comply with the Coke float demand as this was rapidly becoming the only thing she would consume in a day.  By Christmas she was surviving on a high sugar, low volume liquid diet and experiencing discomfort after eating or drinking.  During this time, she also wanted to swim in the pool and sit in the spa for hours and we suspected that this was due to some type of chronic stomach pain or a sensory issue as the water seemed to soothe her even more than it did before.  We explained it away as ‘teenage behaviour issues’, over-sensitivity associated with Angelman Syndrome etc.

During this time, she had also begun getting staph infections on her skin in any cut/graze which was only able to be cured with antibiotics.  She was in a vicious cycle of being run down, not sleeping or eating, getting infections which were all causing more sleep issues, eating issues etc.

Jaz returned from holiday early January with sunburnt lips and this was a harbinger of a very difficult journey for her as she developed a staph and viral infection in her mouth and throat resulting in a harsh course of antibiotics and anti-viral meds.  She also started vomiting and we attributed this to the medications.  We changed antibiotics, switched to homeopathic anti-virals, added anti-nausea pills, but still she continued vomiting up everything she tried to drink or eat.

The journey begins.

After a week of continuous vomiting and multiple doctor’s visits, we took Jaz to Waitakere Hospital.  After spending the day there, she managed to drink a few sips of apple juice and so she was discharged with more anti-nausea medication.  The vomiting continued though and got progressively worse over the next week.

It’s ironic how a crisis always seems to happen late at night on a long weekend. A week later, on Sunday night, the phone rings at 1am. “Dad, we have trouble!  Jaz just vomited everywhere again and there was a lot of blood in her vomit!”  A brief consultation follows, and we all agree to call an ambulance.  We take her to the Pediatric Unit at Waitakere Hospital and after the inevitable wait, Sam uncomfortably sleeping on a Recliner chair, me irritatingly pacing the floor, we manage to convince the powers that be that Jaz has some sort of blockage and that some serious investigation is required. They finally agree.  Grant arrives as reinforcement and Carol goes on home duty for Ben and Dan.

Humour in hospital?

We tried to prepare the doctors on what to expect from Jaz when giving her pills or medication, explaining that, because of her fear of things medical, her inability to explain her fears etc, she would need a full anaesthetic for any sort of procedure.  Any X-Ray would be an ordeal and as for any nasal tube insertion..well, who knows how they would achieve that??  We knew from experience that the last time that Jasmine had her teeth checked, at 9 yrs old, her body resisted the liquid anaesthetic that was strong enough to fell a young horse, and although sedated, it required many nurses, doctors and family members to wrestle her into the theater and onto the bed.   We explained this and the fact that she was now, at 15 years old, the size of a small giraffe with the memory of an elephant and also had the benefit of hindsight in planning her resistance strategy to fend off and, yes, maybe incapacitate any anaesthetists/nurses, doctors or helpers who attempted to approach her with anything resembling a syringe or gas mask.  We decided to tackle an X-Ray first as this seemed to be a good place to start.

Many hours, and many practise sessions later, Jaz managed a standing X-Ray!  Step one achieved.  From the X-ray it looked as though she was constipated and that this could be the cause of the vomiting, so it was decided she needed laxatives and a nasal gastric tube!  At this early stage in the story, approaching her with a stethoscope or thermometer was bad enough, so she had to be coaxed, bribed and convinced to swallow a sedative to at least allay some of her anxiety.

The Paediatric Team was alerted and was in position in theater.  The plan “A” oral sedative strategy was immediately abandoned when Jaz vomited it up.  Plan “B” swung into action. This was done quietly and calmly, walking with Jaz down to the operating theater, hand in hand joking and laughing to allay her fears and hide ours. The strategy seemed to be working well until we turned the corner and faced the glassed resuscitation room with chrome medical equipment beeping and flashing and glinting like Richard Kiel’s teeth in a James Bond movie.  Under the intense bright lights were arrayed the medical team.  Dressed in their impressive green and blue gowns and overalls of modern theater (operating that is), a forest of purple gloved hands were raised in greeting and, almost as one, a chorus of “Hi Jaz” emanated from behind 12 surgical masks!

Jaz bolted in fright but was chased down and dragged back.  Hugged tightly by mom and dad, someone jabbed her in the thigh with a sedative, then she was traumatically picked up onto the bed and held down and the gas-mask placed over nose and mouth.  It was a battle with casualties!  A doctor was kicked in the chest, Grant, on feet duty had a ‘below- the- belt’ heel strike, a nurse got bitten on the hand, I grabbed Sam’s arm by mistake and she, for some reason, arm wrestled the anaesthetist’s free arm to the bed. Chaos reigned until, finally, Jaz succumbed.  Talk about wrestling a fully-grown horse!

Eventually laxatives were administered, and a nasal-gastric tube and a drip were inserted.  Jaz and Sam (in a recliner armchair!) then settled down in the ward to get some sleep.  That night Jaz again vomited severely and dislodged the nasal-gastric tube.  So much for that!

After a week on a drip and having snacked on small bits of food through the week, Jaz was discharged from Waitakere hospital – only to vomit again that same night!

By the following Thursday the vomiting had increased to the extent that Jaz could, again, not hold down any fluids.  She had now lost 12 kg in weight!  We returned to Waitakere Hospital where we requested that they do a CT scan under a general anaesthetic – or at least refer us for one if they couldn’t do it.  This they refused to do with no valid explanation to us. We requested that they refer us to Starship Children’s Hospital which they again refused, so we marched out of there on Thursday evening and at 6am Friday morning we arrived at Starship Emergency Department with no referral.

Angels of Mercy?

A non-referral to a big hospital is normally a serious drawback.  The reception one gets is similar to that which a queue-jumper receives – you become ‘persona non grata’ so we had a battle on our hands to be admitted.  For 4 hours we must have explained our position and Jasmine’s condition at least 10 times, over and over and over.  We were all very tired and about to capitulate when, suddenly the door opened and a young nurse entered and blurted out, “I have to tell you this – I am 25 yrs old and for almost 10 years I had chronic stomach pain and I was passed from one doctor to the other and they found nothing until I found the right doctor who could help.  My advice is this – do not give up until Jaz is admitted and do not give up until you have a diagnosis!!”  Amazingly Jaz held out her arms and they hugged, and then she was gone.  She came back in to check up on Jaz once more and we never saw her again!  As I looked away from her, I glanced down at a magazine someone had left on the table and some words caught my eye.  They read “Trust in the Lord with all your heart and do not lean on your own understanding, in all ways acknowledge him, and He will make straight your paths”.  I pointed it out to Sam and as we stared at each other in contemplation, the door opened, and a young surgeon came in.  With renewed determination and fortitude, we told him that under no circumstance were we going to leave the hospital.  He looked taken aback, left and quickly returned with Jasmine’s previous x-rays and an associate whom, he said, had written a paper on SMA Syndrome and felt that it was worth investigating further. We were in!

By this time Sam, who had to stay with Jaz in hospital, was already two weeks absent from her new Job and Carol and I moved into her home to look after Dan and Ben.

We had no clue what SMA Syndrome was!

 

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“Poor- poor Joseph watcha gonna do?

Things look bad for you, hey. Watcha you gonna do…?”

From very early on in Jazzie’s life she was terribly timid and tentative when attempting any new venture or activity and the Butterfly Farm event where she freaked out (see Mr Mistoffelees post), was a harbinger for what was awaiting her, and us, in the future.  Besides the obvious hurdles which we faced with her, such as her reticence and, more often than not, refusal, to interact with crowds, schoolkids, strangers, animals and insects etc, dark places such as event centres, where shows required low lighting, cinemas and theatres were extremely intimidating for her.  Her fears seemed to be exacerbated by the dark.  We think that the ubiquitous spectre of getting lost and being unable to ask for help, or make herself understood, was ever present in her makeup.  It was only when she was 12 years old that she went out with a friend for the first time in a car that was not owned by a close family member.  Still to this day she has also only had a handful of sleepovers, unaccompanied by her mom, at our home.

One day, Jaz at age 8, after much play-acting, scenario setting, rehearsing and cajoling by us all to prepare her for the upcoming event, set off excitedly for the cinema to see a new kids’ movie, accompanied by her two brothers, Melissa and I.  Armed with huge boxes of buttery popcorn, fizzy drinks and ice cream etc. we wedged ourselves excitedly and expectantly into our seats.  The booming sound heralding an upcoming movie drowned out the rattling of packets as we confidently snuggled in.  Then the lights went out – Jaz’s popcorn and drink were hastily cast aside as she jumped up in fright and ran for the exit.  I caught up with her in the cinema lobby where I managed to pacify her.  She would not return and, so, there we sat until the end of the movie.

The next time we attempted to encourage Jaz to take part in an indoor night time event (what were we thinking?) was a ‘Lazer-Strike’ kids party event – an interactive game where groups of kids run wild in a dark hall ‘shooting’ each other with laser guns.  Jasmine was so excited to take part, but as the marauding gangs of children turned rogue, and the lights went out, she bolted for the exit, refusing to return to the game!

The same thing happened when we all went to play nighttime putt-putt (again – what were we thinking?).  Even with all her pre-event enthusiasm, there was no way could we get her to participate once she got there.  Then came other daytime events where there were crowds of participants.  The athletics and swim meets, the basketball, and ten pin bowling events which provided new challenging sensory experiences and which, for her, were very difficult for her to suddenly pitch up and just join in.

We figured out that just arriving at an event, a new pool, or bowling alley for example, with the sound of competing schoolkids chattering, the sight of groups of strangers, the reflecting lights on the water, strange odours, neon signs, well- wishers instructing or advising her etc. was a massive sensory overload for her to deal with, and so we had to prepare her and give her the tools to use to be able control herself.  She was also unsure of her own ability, and practicing in advance for the event gave her a bit of added self-confidence.  So, to prepare her we decided to always ‘role-play’ the upcoming event well in advance.  If there was an athletics event or swim meet coming up, we first discussed things with her, then made art drawings, played games with dolls, purchasing her something new and special to wear, a new hat, goggles or running shoes, helped.  A visit the track or pool, sometimes more than once to get used to the surroundings, was essential.

The first time we went to a live musical theatre production was a leap into the unknown.  We were afraid that she would bolt out of the premises, screaming or crying (or both) as soon as the lights went down, and we could well and truly see one of us spending the evening in the car with Jaz while we waited for the show to finish.  The show was Mary Poppins and it was with trepidation that we prepared her for the big day.  We booked seats in the second row from the front, a couple of metres from the orchestra pit.  In the weeks prior to the show we played the music and the videos for her and sang the songs.  We discussed the show with her and involved her friend and her two brothers in the hope that she would be totally committed to sitting for a long time in the theatre.  And the “DARK, THE DARK” (said by me with Quasimodo hands-on head actions!) was always the unknown factor facing us.  The big evening came, with Jaz and friend excitedly dressing up in beautiful dresses and doing their hair etc.

With big eyes Jaz sat through the show transfixed by the wonder of a two-dimensional video coming to life in front of her eyes.  She was shown when to applaud, and by the shows end was doing it spontaneously by herself, even exclaiming loudly and pointing upwards as Mary Poppins magically rose up under her brolly above the stage.  Jasmine was hooked!  The evening turned out to be the breakthrough we had been searching for.  At last she was ‘seeing the light’ as it were.

Since then, we try to take Jasmine, and the other kids, to a few live productions every year.

When we booked to see Cats, we booked well in advance and eventually had to mark the days leading up to the show on the calendar so Jaz would know how many sleeps were left. (Her single-mindedness is relentless and we heard about Cats every day for months!).  She carried the tickets around with her for 6 weeks before the event – Sam was relieved that they were only printouts of the e-tickets… but Jaz didn’t lose even one ticket and we went to the show, with the original, now crumpled tickets still clutched in Jasmine’s hand!

On Sunday last week, we took Jaz to her 7^th live show.  This time it was ‘Joseph and the Amazing Technicolor Dreamcoat’.  As usual we had prepared Jaz for the event by encouraging her to listen and sing to the music, and watch the videos on her IPad.  The day before the show she insisted on buying a new lip gloss, and on the day of the show, there was much excitement with hair being styled, even a touch of make-up applied and she herself, choosing what she wished to wear.  At the Civic, Jaz strode confidently into the theatre, leading the way for us all, requested her own programme, and sat quietly in her seat awaiting the start.  We were sitting directly behind her (which was another milestone as she sat with the other kids and not next to one of us adults) and could see her enraptured facial expression as she studied the pictures of her programme.  The lights went out and the production started.  During the ‘coat of many colours’ song we saw her singing quietly to herself, and watched proudly as she enthusiastically clapped at the correct time, so enraptured and involved that she was often the first to applaud.

At the interval, she turned to us and asked “More?” Her smile when we said, “Yes, Jaz, there’s another half”, said it all!  During the break, she went and stood in the queue herself to get her ice cream and looked so grown up and self-contained as she stood with the other kids.  She was confident and unafraid, animated and excited and led the way, in the muted theatre lighting, back to her seat.  Looking again through her programme she settled back to watch the second half.

By now, I was watching her almost as much as the production.  It seemed surreal to me, seeing her sitting in front of us, applauding and cheering on cue, humming to herself, clapping in time to the rhythm, and her casual nodding to us when asked if she understood a particular point.  Her general maturity in demeanour, looks and behaviour suddenly gave the event, for me, an enormous, new dimension emotion.  Choked up with pride, from the seat behind, I leaned over and impulsively whispered to her…. “Jaz………….I am sooooo proud of you!”  She half turned to me and, with eyes still on the stage, nodded her understanding, reached backwards, searching for my hand and pulled it towards her and gently kissed it as if she sensed my feelings.  She was proud of herself!

Welcome to Theatre Island Jaz!

Jaz now plays 10 pin bowls. Attends Laser strike kids’ parties, Glow in the dark Putt- Putt, plays outside hide and seek at night, competes in athletic events, and crowded swimming meets and many other things, all the while, controlling a fear inflamed by her sensory disabilities – how amazing is that?

Sung to the tune of Joseph….

“Sha la la Jasmine, you’re doing fine.

You and your dreams go ahead of your time.

Go go go go go go go Jasmine you know what they say?

Hang on now Jasmine you’ll make it some day,

ahead of your time!

Sha la la Jasmine you’re doing fine!”

GO JAZ!

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Has anyone ever thought…

What must it be like to live in a world where nothing happens as expected, as ‘normal’? Where you live slightly out of sync with everything and everyone. Where every day is a struggle because you just don’t know what, and how, things are going to show up for you?

What must it be like to sit at a table with a whole bunch of people, all talking and laughing together – speaking a language you fully understand but cannot speak? Where no one talks to you, no one asks you a question or waits to hear your latest funny story, where you might as well be invisible. But you so want to be seen and heard! So you try to join in by laughing really loudly – maybe someone will notice you then and talk to you too – or maybe, you point excitedly across the table at someone and make a crazy sound! Yes, they notice you! So you laugh louder and stand up in your chair…but instead of including you, the others just laugh nervously and look at each other, and away from you, and it all gets awkward …and so you do something more crazy – look at me look at me, don’t forget I’m here….but then someone tells you to stop and again STOP!!! So you do… and then they carry on talking without you, so you get up, leave your dinner at the table and go and sit in the lounge. After all, you feel awkward and silly now and you can’t talk like they do, and no-one understands anyway so what’s the point? What must it be like?

What must it be like, to have an itchy bite on your foot? An itchy bite that feels so huge and itchy that it is taking over your whole body. Everything itches, every part of your body is on fire. You can’t sleep or sit still it is so itchy, all your senses are firing out of sync, you can’t think straight, can’t make sense of anything, can’t sit still, can’t sleep – it is all so overwhelming – all because you have an itchy bite on your foot! What must it be like?

What must it be like, to never be able to tell your mom what happened to you while everyone else is telling their version of the story. What must it be like to know others are lying and telling stories about you that aren’t true – and you can’t tell your side of the story? And even when you do try to explain, no-one understands you. What must it be like to have to stand there while lies are told about you, events are twisted and no one hears you and will never ever get to hear the truth! What must it be like to be treated like you are dumb and stupid just because you can’t talk? What must it be like?

What must it be like to have all the words in your head, but when you open your mouth to talk, they all come out completely wrong and everyone looks at you blankly. What must it be like to never be understood, never heard? What must it be like?

What must it be like to watch from the side-lines and be that extra spare part of the group? And when that gets too much and you so desperately want someone to include you, you start chasing them and playing tag, but somehow you are always ‘it’ and you can never catch them.  But you get more and more excited because the others are playing with you – until it starts to feel mean because you are always ‘it’ – and you can never catch them.  So you stop, and sit down and cry instead.  And then no-one wants to play with you anymore.  What must it be like to not be able to play the same way as everyone else? What must it be like?

What must it be like when you walk into a room full of people and everyone stares at you? When you get so overwhelmed that your body reacts and you pull up your shirt – and then you realise that you really do seem different now, so you run out of the room and go and sit on your own somewhere – that’s much safer. What must it be like?

What must it be like when you so badly need to go to the toilet, but the moment you walk into the bathroom, the smell is overwhelming, the sight of the toilet and the feeling of needing to go all combine into a massive sensory overload that causes you to start heaving and vomiting, so you run out of the bathroom with your pants still down. You know you shouldn’t do that sort of thing, but you can’t stop it when it happens.  What must it be like to not be able to control your reaction to even the most basic of bodily functions? What must it be like?

What must it be like to be so desperately tired – so tired that you can’t even focus your eyes? And then you lie down in bed and close your eyes, and it feels like you have lost your bearings, that the room is spinning around you, so you have to jump up and go and sit on the couch, keep your feet on the floor, and your eyes open– even though you are so tired all you want to do is sleep! But you can’t…so you watch a movie instead. At least the room doesn’t spin then. What must it be like?

What must it be like to not be able to feel the need to swallow? When your shirt is always wet and uncomfortable. When you walk up to others and hug them they recoil and wipe their face. When you see food, and your mouth waters, and then you notice everyone is looking at you. And you realise you’re dribbling badly! Your shirt is wet and uncomfortable and everyone is staring, but it’s too late to do anything about it. What must it be like?

What must it be like to know what it should be like for you, how things should happen, but somehow it doesn’t work in the same way? What must it be like to always be trying to hold it together, to make your body react in the way it is supposed to, to be like everyone else? What must it be like to do all these things each and every day, but never quite get it right – you are still so different, still invisible, still not counted? What must it be like to work so hard at everything and still somehow, to never be treated as a real person? What must it be like to battle these challenges every minute of every day but still to never be admired and respected by your peers, to still never quite fit in? What must it be like?

Maybe it is like being in the in the dark and needing to turn on a light so that you can see, but when you flick the switch, the dishwasher turns on.  So, you try again, to turn on that light, but this time the garage door opens, or you get a shock! Whatever…it is always different – and never the same as when others flick the switch. It always works for them. But the only way to turn on that light is to keep trying the switch over and over again, never quite knowing what to expect when you do, but you keep doing it, finding the courage to face the unknown and the failures, again and again, because that is the only way that light will, perhaps, turn on – like it does for everyone else…Ever thought about that? Ever thought about what it must be like?

Authors note: These are only a very few of the many challenges Jaz faces every single day, but I hope that it gives you something to think about and a different way of thinking about all those who struggle each and every day with even the most simple things.

We love you Jaz. You remind us every day of what is important in life – unconditional love, hope, courage, perseverance, forgiveness, gratitude and faith. Thank you.  Love Mum

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When we realised that all of Jasmine’s main senses were compromised, we were overwhelmed by the fact that they were indeed all interrelated and magnified. Her sense of smell, for example, was so acute that her own visit to the toilet caused her to vomit.  The sight or feel of anything brown and squishy would have a similar result, the sound of a flushed loo or the sound of someone else vomiting, would cause her to throw up. All her senses are distorted and are, probably, of frightening concern to her. She is acutely aware of the fact that others do not have the same issues as she does and of her own struggle to live normally. She lives in constant fear of anything that is apt to be a sensory challenge for her and, the combined effect of more than one sense being involved at any one time must be, for her, daunting and extremely limiting, giving rise to a host of evasive and deflective strategies. Her nail biting and lack of speech might just be the result of this ‘Sensory Integrative Dysfunction’ in her brain. These dysfunctions are obvious only when it results in some extreme event such as vomiting, but many of the dysfunctions must remain unseen – and will remain unobserved and overlooked by the majority of people, us included, not trained to recognise them. The fact is that the whole nervous system is probably involved and the brain is the conductor of this ‘nerve interlinked’ orchestra.

To the 5 human senses one should link the vestibular sense and the proprioceptive sense. The process of sensory integration, being the unconscious process of the brain in the organisation of all the information from these senses (taste, sight, hearing, touch, smell, movement, gravity and position), must be a huge, complicated, energy-sapping task. The process of sifting through the information and selecting on what to focus upon, allows the person to respond to particular situations. If this process is not functioning smoothly, there are bound to be many developmental problems as it also forms the underlying foundation for academic learning and social behaviour. (See “Sensory Integration and The Child” by Jane Ayres. P5)

We realise that the vestibular system is the sensory system that provides the leading contribution to the sense of balance and spatial orientation for co-ordinating movement and that all of our initial physical work with Jaz was, undoubtedly, the correct path to follow.  However, what we did not realise was that the ear, in all its complexities, is an incredibly vital part in all of this and so now it has become an important area for us to tackle in order to help Jaz. Specifically, we feel that, along her path to ‘Speech Island’, one of her major hurdles could be the process of listening correctly. (Listening Island).

To figure out a way of teaching Jaz to listen correctly, our investigation has led us to try to understand and implement the principles of “The Tomatis Listening Method” and a brief resume follows:

Mixed dominance can occur in ones’ body due to ‘sensory dysfunction’ and from the beginning we have encouraged Jaz to be right-handed and right-footed. Initially in all her games she tended not to have a strong preference so, instinctively, we encouraged her to choose the ‘right’.

But what about her eyes? Early on we realised that she could also be getting mixed signals from her eyes (left-eye dominant and right-handed can be extremely confusing), and we have used an eye patch to cover one eye, as a method of encouraging her to follow this path. (See the book “THE WOMAN WHO CHANGED HER BRAIN” by Barbara Arrowsmith-Young). We still do this in limited ways with Jaz.

Also, modern theories about dyslexia define dyslexia as a problem caused by phonological and auditory processing challenges rather than only visual challenges. A child who is both left eye dominant and right-handed may actually develop phonological challenges when learning to read. (see “Movements that Heal” by Harold Blomberg p 151).

In addition to registering sounds and monitoring speech, the ears control balance and body movements and, if not working in harmony, both movement and balance and probably the whole integrated nervous system would be compromised. Tomatis says that in order to understand the root of hearing problems it is important to go back to the time in life when the ears first started to operate, to the time before birth and during infancy. (see “When Listening Comes Alive” by Paul Madaule- p10). During this time, much is heard by the baby through bone conduction, the baby picking up the vibrations from the mother’s spine, hip etc.

We initially thought that Jasmine was not hearing enough, but thinking more about it from her heightened senses point of view, it is very possible that she is hearing too much – similar to some autistic children who cover their ears and who seem hurt by some noises and seem afraid of them! For Tomatis, autism is the purest form of ‘non- listening’. We felt that if that was the case with Jaz, she would benefit from a listening training program.

The listening training program that Jaz follows entails the use of sophisticated headphones to listen to a sound stimulation program of music/sounds and rhythm designed to encourage right-ear dominance (Tomatis’ “leading ear”). The ‘sounds’ are conducted as both sound and vibrations and are listened to with no electronic vision interference. (No TV or IPad).

Since starting the program there has been a significant increase in tolerance for wearing the headphones and she can now sit for 40 minutes at a stretch. Six months ago, she could not do 10 seconds. There is also an improvement in Jasmine’s musical appreciation. She now listens to music and songs on her Ipad, hums tunes and attempts to sing the words. She seems to listen more intently and to focus more easily on what is said. She is also attempting to copy words when doing speech at school and with less embarrassment at her mispronunciations.

Many of Jaz’s retained reflex inhibition exercises are done to nursery-rhymes.  One of her favourites is done while singing “Twinkle Twinkle Little Star”, and recently, Jaz, while doing the exercise has been humming the tune and singing it like this:

m m m m m m star

m m m m m m are

m m m m m m hi

m m m m m m i

m m m m m m star

m m m m m m ARE!

We know who that star is Jaz  –  it’s you!

Hear ye! hear ye!    You are on the way to ‘Listening Island‘ Jaz!

For years Jaz did not seem to be interested in insects or birds and, as a matter of course, we saw it as an area that needed to be investigated as to why this was so.  We tried to get her to touch a frog, worm and caterpillar, look at a chameleon, slug or ant, and quite frankly, initially she seemed to not even notice them until they were pointed out to her.  Even, in those early days, birds had no interest for her and if she saw a bird in a cage she avoided it.  Bird calls and tweets never caught her interest.  We thought she had a hearing problem as she never looked up at the sound of a gull screeching or dove cooing, but the sight of one seemed to galvanise evasive action.

One day we joined an Angelman society outing at the Butterfly Farm in Auckland.  We were all looking forward to seeing the fantastic array of beautiful coloured insects and we went to great lengths to prepare Jaz for the upcoming occasion by drawing and colouring-in pictures of them, and telling her about the life-cycle etc.  However, within seconds of entering the enclosure, she saw the butterflies flying around and she became hysterical.  Now, by hysterical, I mean hysterical! (We had experienced this before on occasions when Jaz had a reaction to dogs when, on sight, she would react violently in fear and climb up the nearest available person, but we thought that this was actually a fear of the dog attacking and biting her).  However, this reaction was, in a way, different.  It was almost as if she was seeing a terrifying spectre and it reminded us of her night terrors.  I had the feeling that the incoming images inside her brain were incomprehensible to her, as if they were so strange, unfathomable and frightening to her that she had to get away from them at all costs.  When she saw the erratic flight and un-rhythmic wing beats of the butterflies, she screamed, ducked her head and desperately climbed up Sam as though it was a life or death struggle for her.  It was scary for us all as well and we hastily left the area.  At some distance away Jaz was able to calm down and regather herself.  Everything was explained to her, pictures drawn, games made up to get her to smile and accept, but no amount of persuasion could get her to go back into the enclosure.   A very upset and rattled Sam blamed herself for the problem, calling herself a bad mother for not foreseeing that Jaz might encounter a problem.  This new incident, following the weeks of bad nights’ sleep and the night terrors that Jaz was experiencing, rattled us and we hastily left the venue with our tails between our legs, pondering how this new paradigm shift from normality could be induced by a such lovely, gentle, beautiful delicate and benign and nonthreatening creature.

For at least two years thereafter we were very circumspect with regards to birds and butterflies, bees and other flying insects.  We gradually tried to introduce them into the home-school arena, but no amount of coaxing, coercion or begging, no matter how funny the game was or how involved Jaz was in it, could persuade her to touch a butterfly or bird.  She would avoid them at all costs and, sometimes, even shuddered at the thought of them.

At the age of seven Jaz had stem-cell treatment (see Stem Cell Therapy – a Twist).  One of the first things we noticed on the way home from the hospital was that she pointed out birds flying in the sky!  At 6am the next morning, sitting outside a MacDonald’s take away in a strange foreign country, some hungry pigeons landed close by and Jaz pointed to them exclaiming “oooo”, as though it was the first time she had seen one.  Sam and I chatted excitedly about this new breakthrough, but it would prove to be only the first step on the long path to overcoming Jasmine’s aversion to winged creatures.

With the passing of time, it became apparent that Jasmine’s sensory issues (her abnormal sense of smell, touch, taste, hearing, never seeming to hear birds etc, and sight) were indicative of a severe sensory dysfunction.  Jean Ayres’ Sensory Integration and the Child, page 3, explains this saying, “Some problems, such as measles or broken bones or poor eyesight, are obvious.  Others such as slow learning and poor behaviour are not obvious.  Slow learning and poor behaviour are often caused by inadequate sensory integration within the child’s brain.  These sensory integration problems are not obvious….” She goes on to explain that “Sensory integration is the organisation of sensations for use.  Our senses give us the information about the physical conditions of our body and the environment around us.  Sensations flow into the brain like streams flowing into a lake.  Countless bits of information enter our brain at any moment, not only from our eyes but from every place in our body.  The brain must organise all of these sensations if a person is to move and learn and behave in a productive manner.  The brain locates, sorts, and orders sensations like a traffic officer directs moving cars.  When sensations flow in a well organised or integrated manner the brain can use those sensations to form perceptions, behaviours and learning.  When the flow of sensations is disorganised, life can be like a rush hour traffic jam.”  We took this on board and started to try to help Jaz to get her body too self-correct.

To help Jaz with her sensory integration, we decided to tackle the problem as follows:

1. We exposed her to as many new tactile and physical experiences as we could, to aid in the sensory integration.
2. Once a task was achieved we quickly set the bar higher, but allowed her the time to think about it and allowed her to do it in her own time.
3. We always trusted in her judgement and tried not to enforce our own agenda too rigidly.
4. We incorporated a reflex integration program.
5. We incorporated rhythm into the program.
6. We tried to use play and games as much as possible in the program.
7. We always tried to make it fun for her.

Just imagine the impact on ones’ person if one of the senses were not to function correctly and seamlessly in ones’ body.  (Years ago a trial was done on a group of volunteers where they were fitted with inverting spectacle lenses and most were incapacitated for a long time.)  All of the senses are linked, so, for example, a sore tummy could possibly cause a vision or balance disturbance; a knock on a shin could cause a hearing loss or an acrid taste in one’s mouth; a touch of floating seaweed on ones’ leg while in the sea, could perhaps result in frightening visions; a tiny static shock whilst playing with a plastic child’s toy could possibly light up a person’s whole nervous system causing immense disorientation, fear etc.  I could elaborate but the list obviously goes on and on.

Bearing in mind that any gains in sensory integration, because of the complexity of the nervous system, are probably slow, we think Jaz has made enormous progress.  From her ability to now be able handle animals (see Mr Mistoffel…ees a cat), enter a public toilet, walk in and swim in the surf with floating seaweed, swallow her tablet and capsule medication easily, walk over pebbly ground barefoot, feel if water is hot by poking her finger into it etc.  All these things are massive strides forward for a sensorial defunctive person.  Liken this to a person with arachnophobia who, on switching on the light in a dark room finds the walls, ceiling and floor and themselves covered in huge, hairy, black tarantulas and then having the ability to be able control their resultant overpowering fear and easily deal with it.  In a nutshell Jaz has slowly and quietly overcome many huge sensory hurdles!

A short while ago we rescued a 2 week old baby fantail pigeon which we nurtured and raised, gave it the name Num-Num (Peter Sellers movie “The Party”) and used it as an aid/incentive in Jaz’s school lessons.  A dovecote was built, and, most evenings at bedtime, Jaz would Skype call us to talk to Num-Num, who would be perched on the curtain rail before being put to bed in its box.  “Good-nights” would be said with Carol or I holding up the IPAD to curtain rail level so that Jaz and Num-Num could see each other.  Jaz and, both, her close friend Meika and brother Ben had frequent contact with Num-Num, handling and petting it , sitting with it in the lounge and taking turns holding it while watching TV.

Jaz gradually learnt to control her initial trepidation and her invoked sensory issues and behaved as well as her friend and brother did, each time getting more confident with her new found ability.   She eventually learnt to pet and handle Num-Num with the skill of a bird fancier, and even progressed to bottle-feeding her.   Jaz even allowed Num-Num to perch on her shoulder and then her head – an amazing achievement for a child with a sensory processing disorder!!

 

 

 

 

 

 

 

 

 

 

Num-Num was taken for walks, taught to fly and homed to our home by travelling ever increasing distances away and then released to fly back home.    After a month or so we decided to return Num-Num to the wild and so started distancing ourselves from it, by not letting it inside on warmer evenings, and eventually it started to stay away for a day or two – always returning for breakfast.

This morning, Num-Num, who we now think is a female, arrived again with a rustling feather flurry.  She is a pure white fantail pigeon and, standing tall and looking into the room where she was raised, she caused Jaz to look up and excitedly exclaim, “Kook (look) here.  Num-Num here.  Num-Num eat?”  Num-Num allowed us to pick her up, and Jaz to kiss her head and tickle her chest feathers and feed her.  When she had eaten, she took off, hovered and fluttered in front of the open door looking in as if to say “goodbye, thanks” and off she flew with graceful power, a stunning white against the blue morning sky.  Jaz looked at Carol and I and asked “Oooo eh (where) Num-Num go?” I answered.  “Gone to her new home Jaz”, but I thought to myself, “She has gone off to Bird Island Jaz, do you know where that is?  That’s very, very close to Papillon Island!

 

A very hunter did I rush,

Upon the prey:— with leaps and spring 

I followed on from brake to bush;

But she, God love her, feared to brush,

The dust from off its wings

William Wordsworth—- “To a Butterfly”

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The surf was clean, big and powerful out at Shag Rock the day I met Adam Strange. With only a few of us surfing so far out from the beach in those risky, adrenaline inducing, deep water, winter west coast conditions, we were all keeping an eye out for each other, a kind of competitive brotherhood if you like.

With an air of confident ability and agility for such a large bodied surfer, Adam surfed the big waves with a grace, simplicity and sincerity that I had not often seen before.  He was surfing a distinctive, retro style, orange, single-fin longboard and, impressed, I paddled over to compliment him and introduce myself.  He accepted my approbation with an openness that I had seldom encountered before and a calm and direct look that projected simple honesty.

After surfing in the challenging conditions of Maori bay, the camaraderie, surf jargon answer to the question of enjoyment, would often be, “I survived”.   So after my surf and the freezing, wind-blown and weary trudge back up the 40 metre cliff, I saw Adam in the carpark, and instinctively, wishing to test his sense of humour, I asked the question. His answer to me was to walk over and pour hot water over me from the big container that he was using to shower with, and to simply say with a smile, “Always worth it when you can have a hot shower afterwards you know – it makes you feel alive hey?”  He had immediately figured me out and instantly we had formed the loose bonds of a mutually respectful, surfing friendship.

A week or so after that memorable surf day, I was down at the park with Jaz where we used to do ‘school in the park’ virtually every day for years.  It was here that she learnt one of her first words.   By her exhorting us to swing her, she would shout  “higher, higher” (and this, to this day, is used preferentially by her instead of ‘park’).  Adam, walking by, came over to chat with me. He was instantly drawn to Jaz, as she was to him. With her smiling, showing off and engaging him with actions as well as in her own language, she even allowed him to push her on the swing and called him to go on the slide with her.  I was again impressed with Adam’s reaction and easy understanding of her, and the dynamics of my role with her, and at Jasmine’s unusual acceptance of this virtual stranger.

The next week I again met him in the surf and afterwards he appeared at my car, gave me hot shower and a book on autism.

For a year or two, every time we met in the surf, which was quite often as we were both living in Muriwai, we would chat about the type of physical and mental intervention therapy we were doing with Jaz, the stem cell therapy and the resultant outcome, the theory and practical aspects of Angelman Syndrome, the Spiritual Universe, God and surfing and the benefits thereof.  Adam’s genuine interest and intellectual grasp of the problems we were facing, and his admirable empathy with Jaz, was unusual and often he would appear at the park just to see her and chat with me about her progress. She always responded with excitement and by showing him any new feat that she had mastered.

In time Adam introduced us to his lovely partner, Meg, and one day they announced her pregnancy.  Well into his forties, he was thrilled and very proud of this late development in his life.  We talked quite a lot about kids and then he asked me whether Sam and Grant would mind if they named their upcoming baby girl Jasmine. Of course, of course they said… proud!

Our quiet friendship trundled along and in due course, their little girl was born and, as Meg’s mother’s name was Violet, Adam told me later, they had a last minute change of plan and named the little girl Indigo.

Over time they introduced Jasmine to Indigo and again the connection between them was instant.

During the last week of February 2013 the surf was good and for the four days in succession that I surfed, Adam was there.  It struck me as unusual that we seemed to be so ‘in sync’ with our timing.  Between waves we chatted about our love of the sport, about the danger, excitement and pure freedom of surfing, the wind, the fish activity in the water, the cold and the raw power of nature, about Jasmine, and our family and about Meg and Indigo. His pride of his little family shone through.  The big man was full of love and empathy and I never heard him say anything derogatory or negative about anyone and he encouraged me again to be positive about Jasmine, about it all working out well and about all of the positive changes that he had seen in her.  His incredible empathy resonated with me and made me acutely aware of our role in Sam and Grant’s lives.

On the last day that I surfed with Adam, we were two of only a handful of surfers spread out along Muriwai beach. We chatted about his fitness preparation for an upcoming charity swim from Rangitoto Island to Mission bay and I declined his invitation to swim with him when he trained.  While sitting on our boards facing each other, an unusual movement near my foot, perhaps a touch on my leg rope or perhaps just my imagination, caused me to hastily pull my leg up in a knee-jerk response.  Slightly embarrassed, and trying to deflect the moment, I jokingly paddled away hastily for a few strokes and laughingly sat up and looked back at him. We both instantly knew what I had been worried about, but the direct and unfathomable look in his eyes when he spoke riveted me to the moment, causing me to listen intently when he said to me, “Relax Courtney …. think about this…..how would you rather go? Sitting on your sofa slowly dying of the big “C” or out in the ocean doing what you love?”  We looked directly at each other, 5 metres apart, while we pondered the import of his question. I smiled at him, said, “Yeah… I know”.   Five minutes later he said goodbye and went off up the coast for some paddling training and I went back to the beach and home to Carol, who was doing Jazzie’s ‘school-school’.  For the first time ever, my wetsuit had to be washed due to the fishy smell emanating from it. There were even tiny fish scales left after my shower!

The next day I took Jaz to Special Olympics athletics practice and on the way home I was contacted by the surf shop in Muriwai, checking to see whether it was me who had been attacked by a great white shark in Maori Bay!  I was shocked!  I immediately phoned Adam – only to be informed that he was the one who was attacked and killed.

Within minutes, the news had reverberated around the world like a sonic boom. No one could believe what had happened! The shark still had his body and the brave young lifesavers tried to retrieve it using their inflatable craft, but the 5 metre Great White turned on them.  Police were called out and one policeman armed with an automatic assault weapon, went out in an inflatable and drove the shark off after firing 12 shots. It was very dramatic and traumatic. His body was retrieved from the jaws of his attacker and taken home.

The next day Sam and I went to see Meg and Indigo, and, while talking on the driveway with Adams’ close friends and family, a camper van came around the corner.  As it approached us, the horn started to sound very loudly and so they stopped and asked for our help in switching it off.  Nobody could help them so they drove away hooting loudly, only for it to stop by itself within 10 seconds of leaving. Later, as Adam’s group of friends started to leave, they closed the automatic garage door, behind which friends had been preparing Adam’s coffin.  As the door closed, it rebounded and began to open again.  Inexplicably the door opened and closed 3 times, of its own accord, before it eventually closed. As Sam and I walked away down the driveway we heard a friend say, to no one in particular, “Addie’s at it again.” Sam and I felt his presence on our silent walk back to our car.

Adam’s friends crafted a beautiful memorial bench replicating his boards, using them as a seat and backrest, and set it up overlooking Maori Bay where the attack took place.

One day, I took Jaz there to show it to her and to sit on on the bench for a while. We sat quietly for a couple of minutes, thinking, and I studied her face as she stared out to sea. I don’t know what I was expecting to see in her expression but she suddenly turned and looked at me, her blue eyes crystal clear, and said “Higher?”  I struggled to shield my emotions from her before saying “Ok Jaz, let’s go park…let’s go higher!”

Oh yes, I almost forgot. “Indigo children” is the modern collective name given to children who are believed to possess special, unusual and, sometimes, supernatural traits or abilities, or even learning disabilities!

Isn’t that strange –  Adam Strange?

RIP…

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About 15 years ago Carol and I were retiring.  Everything in those early retirement years seemed to be moving along smoothly. Five years before, for security and safety reasons, we had moved to New Zealand from South Africa.  We built a home 4 hours’ drive from Auckland, where our 2 daughters were settling down to their respective new lives and, with the idea that they could choose to visit us at any time, we built a self- contained unit that provided a private space for them and their partners. Our idyllic setting included golf, fishing, diving, surfing, sailing, hiking, sun, friends, boating and was far enough away from the ‘Big Smoke’, to be enticing for our kids and, especially so, we thought, for future grandkids. All our plans were falling into place and we had it all!

Carol had experienced a lifetime of migraine headaches, but soon after moving to New Zealand, they became more frequent. “It was the coffee, the tea, the weather, the food, hormones, the pillow, neck, back, thyroid etc, etc,” we hypothesised, and the doctors’ guesses were no better. Then the incredibly wonderful and welcome news, that a grandparent loves to hear, pushed our worries about Carol’s headaches to the side.  Our daughter (Sam), was pregnant!

The migraines, however, continued, escalating to the extent that it became imperative that more detailed investigation was necessary and resulted in the feared outcome. A major problem required immediate surgery! We were devastated, stopped in our tracks! We shortened our horizons, hunkered down and saw out the dark storm. Operation successful. We prepared for Jasmine’s birth.

Amid much excitement, the big day arrived. Jaz was born and, as she was handed around, we noticed she was turning blue.  A flurry of medical activity ensued, nurse in a flap – “It’s OK – All’s well! No problem! She is fine”, white uniforms starched and correct. They are medical people, they must know, we assured ourselves.

From day 3, Jaz slept terribly and screamed almost constantly. Her feeding regime was cursory at best and the sleep/feed cycle was brutal on Sam. The feeding/sleep cycle had no rhythm and hence Sam had no rest and had to catnap at all hours of the day and night. (Jaz still has bad sleep and it has been recently discovered that she has an abnormal circadian sleep pattern, the medical prognosis for her is 5hrs sleep/night).  Nights blurred into days and weeks blurred into months. Carol’s recovery from her surgery dictated a careful and circumspect approach when helping Sam and Grant, and, at that stage, little night time relief could be offered by her.  Jaz’s already bad sleep cycle was, by now, being further interrupted by night terrors. (If one has ever seen a night terror gripping a child, one knows how frightening it is. Everyone gets badly shaken up to say the least!).  With difficulty, Jaz was introduced to a bottle to try to offer some relief for Sam.  However, sleep was still elusive and so the routine ‘du jure’ became to take Jaz for a car ride – it seemed that this was the only way she would fall asleep. So, for years, the bewitching hours between 12pm and 4am became the hours of endless driving around with Jaz bundled up in her car seat and the driver praying that she would fall asleep and stay asleep when the car stopped! Many nights were spent with the driver trapped and catching forty winks in the front seat too afraid to make any noise that would awaken her.  The lack of sleep was brutal on all of us and was taking its toll.

At 12 months, Jaz seemed to be developing normally except for her sleep/ crying cycle and the lack of babble and word development. At that stage we were instinctively challenging her physically – encouraging her crawling, walking, motor skills etc. She enjoyed physical activity and loved the water, but we all still worried about her.

When Jasmine was 2, Sam took her to a paediatrician and she was diagnosed with Autism. But a mother’s instinct disagreed, so Sam pushed and pushed the doctors and did hours of online research. Eventually she got the Paediatrician to agree to a test for Angelman syndrome and to the astonishment, and perhaps chagrin of the specialist, it came back positive. We were shocked! This was a whole new ball game but we took the positive approach and realised that at least we knew what we were dealing with and now we had something to work on.

Back then, there was very little information on therapy for Angelman Syndrome. With the prognosis of the ‘Happy Puppet Children’ (dubbed by the paediatrician, Harry Angelman, who first described the syndrome in 1965) being a severe intellectual and developmental disability with lack of speech (approx. 5 words in a lifetime), sleep, seizures, hand flapping, uncontrolled laughter, sensitivity to heat, jerky movements, drooling, tummy / digestive issues, balance, sensory, eating, cognition and general behavioural problems, there was scant information on the type of intervention that we could use to help her to overcome any of the challenges she faced.  It was frustrating to find nothing to guide us and so we tried to tackle her problems by ourselves, starting at a very basic physical level.  Without knowing it, we had, instinctively, started out on our ‘Islands of Success’ journey. Creeping forward slowly, literally one step at a time, and once achieving a small target, immediately putting the next new goal in place.

We read countless books and articles on the subject of Angelman Syndrome, anything to do with Autism, Dyslexia, Down Syndrome, Aspergers, Fragile X, Prader Willi syndrome –  and many other genetic conditions.  All the research and trials or treatments, no matter how diverse, were read and re-read and then discussed between us. Our conclusion was to start by immediately working on Jasmine’s physical skills in the hope that by helping her over those hurdles, the mental and life skills would also improve. Angelman children have a movement or balance disorder which affects their walking gait and confidence in attempting physical challenges and so we chose to address her balance issues first.

We played games with balancing on one leg, walking in circles, walking along a straight line, backwards, catching and throwing and kicking a ball, touching her nose with either hand, fingers, trying to use cross body movements, riding a bike and scooter, swimming in the pool and in the waves, boogie-boarding , rolling, skidding, swinging at the park, sliding down the slides, walking on logs, balancing on fences, climbing trees and walking, walking, walking, across fields, golf courses and bush tracks. Bike rides were long and challenging. The activities seemed to calm her mentally and reduce her apparent hyperactivity as well as improve her skills. The activities have continued until today and it is only in the last year that Jaz has found the skill to roll laterally and walk a figure 8 confidently (age 13yrs).

During all this, Carol and I were travelling to Auckland (Muriwai) for a week, sleeping in our Nissan van, then heading back to Whitianga for a week, and then back to Muriwai for another week, repeating the pattern for months and months- trying to help Sam and Grant.  Grant was working full time, Jaz was still not sleeping, and by now, Daniel, Jaz’s brother was born and the pressure was on.  They were struggling to cope.  The week about regime for us was also tiring and, with Carol still recovering, sleeping in the van was not doing her any good.  So we decided that something had to be done.  We put our house on the market, our furniture in storage and moved to Auckland to help Sam and Grant out.  It was not easy to move out of our comfort zone, but we decided that something had to give and we had to be the ones to do so.

After a year of renting in Muriwai we built a house, the shell being built for us and Carol and I finishing it off ourselves. We painted inside and out, tiled the bathrooms, made the decks and ‘timber floored’ inside, landscaped and planted the garden, concreted the driveway and around the house, made the curtains and hung the blinds.

By the time kindergarten came around Jaz was self- aware enough to realize that she was different and experienced huge separation anxiety – chewing her fingernails to the quick and clinging frantically to any family member who was by her side.  She knew she could not communicate, had focal seizures and was, understandably, very frightened of being left alone.  Sam tried and tried, for 18 months, to settle Jaz at kindy.  Spending every morning at kindy with her, at first with Jaz on her lap, and then over the months, moving gradually further away – trying to reduce the separation anxiety for Jaz.  After 18 months, progress was being made – until Jaz had an incident on the playground and subsequently refused to ever set foot in the kindergarten again – screaming and crying in panic when Sam tried to get her to go back.  So much for 18 months!  In the meantime, the lack of sleep continued and the night-terrors! Oh the night- terrors! The sleep deprivation for mother, Jasmine and us (Grant was working), necessitated a daily roster be kept by us, in which someone covered for the others who needed more sleep. It was an enduring, tough regime.

Jaz started school, so we tackled the separation anxiety again.  One of us would accompany her to school and try to coax her into the classroom. After months we succeeded to, at least, get her through the classroom door and to sit at a table – with one of us close by her side!  Then….the fire alarm went off in the classroom.  “Vacate the school” came the order over the loudspeaker! Jaz freaked and started screaming in fear, running out of the school grounds –  and that was the last time she went to school!  It was too traumatic for her, and too traumatic for us, to carry on.  Even when she had started to get used to other kids, in play she would invariably end up laughing hysterically, chasing everyone and being teased. Kids can be cruel.  It was all too much. So Grant and Sam asked us for help. Could we possibly, home-school Jasmine full time?  “Whoa there pardner!” we thought!  But after a long, and soul searching discussion between Carol and I about the financial issues we would face, we agreed.  Although I had retired early to be able to immigrate, we were not ‘flush with money’, as the exchange rate of 4:1 against us when we moved, had severely dented our resources. I had future business plans and these now had to be shelved. So be it! We agreed.

The New Zealand home-school curriculum is based on the abilities of typically developing children. With Jasmine’s issues such as her being non-verbal and having abnormal sleep, her focal seizures, sensory problems, eating and digestive problems, hyperactivity, deflection strategies, visual control problems, cognitive, mental and physical challenges we needed a different approach. The 3 R,s (reading, riting and rithmatic), that so much of N.Z schooling is based upon, and the assignment regime required by the school authorities, was onerous to say the least.  Jaz could not, for example, ‘see’ letters or numbers in the correct context, she could not enunciate or repeat words, could not explain things, could not tolerate black on white formats, could not remember words, was not dexterous enough to hold a crayon or pencil, was loathe to even attempt to draw or colour in, would not listen to a story and it was very difficult for her to complete any of the ‘normal’ home-school assignments and tasks. Success by repetition, in the normal sense, was not possible with Jaz because it seemed to us that a word or sound repeated by her seemed to have a diminishing success rate.

So we had to take a pragmatic approach to ‘school-school’. School had to be carried out whenever we could, and wherever we were situated and this is the same approach we use today. If it meant on a bike ride, or on a walk, in the pool or pretending to be puppies or kittens, we would teach any lesson we could to get the learning across.

It was, and still is, so important for us to supply her with a happy, safe and secure learning environment where she is able to make mistakes without peer pressure and fear of failure.  Jasmine’s understanding of language far outweighs her ability to verbalise and she often surprises us with her understanding and comprehension.  This, we believe, augers well for her future education, so we will continue to do everything we can to help Jaz become the best she can be.

One particular incident stands out for me…we were trying to teach Jaz to say “Why”.  As she was unable to say the ‘W’ sound, we started to teach her an approximation from the Kaufmann Kit … it went something like this:

“Jaz, say oooooooo”  (left hand open at shoulder height)…

“Ooooooo”…

“Good Jaz”…

“Now, Jaz, say “I” (right hand open at shoulder height)”…

“I”…

“Good Jaz, you are a star!”

“Now Jaz, say oooooo” (left hand up)…“I” (right hand up).

A month later, after many, many attempts, Jaz came up to me and said “pool, neeez?,” (Can we go to the pool please?) and I said, “No Jaz, we have to do some Reading Eggs (her reading online lesson) first”.

Jaz looked me directly in the eyes and asked (proudly) “OOOOO— I?”

(“Why?”)

I answered, choked up, “Because, Jaz, because”, and then I relented, turning aside so she could not see that I was a little overcome, and said to her, “I am soooo proud of you …lets go pool Jaz.”

I now know one of the reasons “OOOOOOOOOOO——I”  we did it!!!

 

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It took us a long time to realise that there was a possible underlying explanation for some of Jaz’s development delays. We had new information which suggested a possible clear path which we could follow in an attempt to correct them. We finally figured out that her reflexes could be compromised and may be an underlying cause of the many problems she was encountering as she grew older. When she was younger we instinctively tackled her issues by concentrating on her physical development which gave her the confidence in some areas, but not in others.  In her early endeavours there was one underlying success and that was with her balance (vestibular area), and even today she relies on movement to stabilise her when she is ‘out of sync.’

Following on from this new information, we felt that her reflexes might not be correctly sequenced or matured and that some unwanted ones might still be lurking. Clues, such as her night terrors, her ‘freezing- while- cycling’ accident, her underwater incident (see FROZEN post), her terrified classroom response when the fire alarm went off, her fear of failure, anxiety, chewing nails, evasion strategies when confronted with speech, writing and reading and meeting new peers etc., suggested that her FEAR PARALYSIS REFLEX (FPR) was still playing a huge part in her physical responses to situations.  The FPR is a withdrawal reflex and is an extreme reaction to ‘startle’ resulting in an immediate shutdown or shock response (such as freezing), immobility, slowing down of the heart rate, drop in blood pressure, cessation of breathing and extreme fear.

We realised that with the FPR still active (not inhibited), the mere occurrence of something that caused her to react in fright – even a mispronunciation, hearing an unknown word, a failed attempt to speak or even a new face popping up in front of her, could result in a paralysing fear and an intense anxiety, which she could not easily overcome. Her whole body and mind could have been under immense stress and, I guess, only the avoidance and deflection strategies quickly put in place by her, saved her from perceived embarrassment and, subsequent, withdrawal from our world.  Not only was it important for her to be able to cope with these ‘frights’ for her own development, it was a safety issue as well.  We felt that it was imperative to deal with the elimination of her FPR before she would be able to progress further.

So, we decided to tackle the inhibition of the Fear Paralysis Reflex first (See FROZEN post).

After the FPR, nature has provided the next reflex which is an over-ride mechanism and, once in place, replaces the FPR.  The MORO reflex may be this ‘over- ride’ system (Refer to Sally Goddard book “Reflexes Learning and Behaviour” p 29).  Where the role of the FPR is to shrink away and slow down the metabolism, the MORO activates the sympathetic nervous system and elicits immediate response.

The MORO reflex develops in two stages. The first stage emerges 9-12 weeks after conception and comprises of movement of arms and legs outward and extension of the head (a withdrawal response) and after birth, facilitates the intake of breath. It is only as the second part of the MORO reflex is developed (by 32 weeks after conception) that withdrawal is overcome by closing of the arms and legs, flexion of the head and after birth, release of breath.

The hypothesis is that the full MORO reflex is necessary in the first months of life to inhibit the previous withdrawal response and protect the infant from an overactive response to a startling situation.

Now, in hindsight, it is obvious to us that Jaz had a problem with her FPR/ MORO reflexes. She, for instance, did not take full breath at birth and had to be coaxed to breathe and cry. She also had terrible night terrors and an extreme fear of many things and situations suggesting the link. In the past we had set about trying to overcome her issues in a reactionary way because we did not understand her problem.  Recently, with more knowledge, we realise that it is very important for the FPR to be inhibited and replaced by the MORO for, if the earliest FPR stages remain overactive, then the reflexes can operate in a reverse chain reaction, placing Jaz at risk rather than protecting her from threatening or dangerous events.

The triggers for the MORO reflex are:

1. Sudden / unexpected happening
2. Stimulation of balance (head position)
3. Sudden movement / change of light in the visual field
4. Noise
5. Pain, temperature change, tactile, handled too roughly.

So, we have set about to correct this deep-seated problem by coaxing Jaz’s body to initiate the natural reflex integration through specific exercises. These exercises attempt to inhibit the problematic reflex while encouraging the integration of the new reflex.

The exercises help the more mature MORO reflex to fully develop, which should then over-ride the activation of the FPR.  This is the line of thinking we have chosen to try to help Jaz.

We take Jaz through a set of exercises.  These exercises have to be carried out for an extended time (months, if not years) as the reflex integration can take a long time to manifest itself. They take about 30min/day and are done with the object of her, eventually, doing them herself. Some are done to a slow rhythm, while others are designed to mimic life encounters. We always try to make the sessions fun.

Watch the videos below for some examples of the exercises Jaz does.

The complexity of the issue that we are dealing with here makes us very aware of the importance of a continuing exercise plan.  Eliciting her co-operation often involves us begging, pleading, bribing, laughing, pretend crying games; being puppies or cats, puppets; including her friends, Mom, Nana, Cookie the Cat, her brothers Ben and Dan, Meika and Bella, her cousin in the games; ice cream, bribes involving swimming, new toys or much desired items, shopping at the Warehouse, eating out, bike rides, videos, games, apps etc.  Phew!

Also, bearing in mind the incredible complexity of the nervous system, we are very careful to observe any changes in Jaz or any increased reticence in doing the tasks.  Any bending, any lying prone or supine, any head movement etc. brings in the added stimulation of her spinal cord and vestibular system, which can cause her to sometimes feel ‘wobbly’, so we pace the exercises according to what Jaz can handle, and what she is comfortable completing!

We are happy to say that there have been very positive results. We have observed many changes in Jaz. She is now less fearful, she is calmer and more in control of herself. She pets animals better than she has done before (see Mr Mistoffelees post), she is less afraid to do a new physical task, she grocery shops and unloads her shopping trolley, plays the XBOX games, bike rides down a steep hill using hand brakes, stops suddenly, surfs on a surfboard in breaking waves, Skypes family and friends by herself, packs her own lunchbox, makes her own sandwiches, operates the TV remote by herself, blows up balloons by herself, manages some yoga poses, answers the phone and is not so shy to have a go at talking and trying to string a sentence together, she doesn’t even seem to be biting her finger nails as much. Many of these are, in a way, subjective but they have mostly happened after her exercises were begun and are indicative of huge progress.

Our conclusion is that her reflexes are slowly advancing up the chronological pathway. After all, how long does it take for a nerve to regenerate?  So it probably takes a long time for the new building blocks to be put in place and for the new preferred neural pathway to develop.

We think that the Fear Paralysis Reflex is retreating and the MORO reflex is in position to assert itself, and we have seen this manifestation in her sometimes assertive way that she speaks when angry, her flying elbow, the toss of her head and her heavy handed whack and, yes kick, if annoyed.  We immediately think ‘teenager’ and roll our eyes toward the heavens, but no, while gazing up we think about tomorrow and the upcoming hassles that teenagers bring and then we think again – tomorrow? To MORO more likely!!!! Praise the Lord Jaz, you have got to MORO! and that means it’s working and you are on your way forward – like Annie, Jaz….

“The sun will come out to MORO,

Bet your bottom dollar that to MORO,

There’ll be sun

Just thinking about to MORO,

Clears away the cobwebs and the sorrow

Till there’s none

To MORO to MORO I love ya, to MORO

You’re only a day away.”

(Annie).

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