Magic Matty!

Three times a week a young man walks Through Our Door and lights up the Heartwell office and gym! His name is Matthew and we all love his larger than life personality.

Matthew is thirteen and he has a Developmental Delay. When he was a baby, at only eight months of age, Matt had open heart surgery. 

At two and a half, he had a liver tumour removed. 

Matt now has high frequency hearing loss, speech difficulties and low muscle tone.

What having a Developmental Delay means for Matty is that when growing up, he was slower to reach normal growth milestones. This has now affected the way he moves, communicates, thinks, learns, and behaves with others. Yet despite all this Matty is a delight to be with.  He bounces through the Heartwell door ready for his session and with a huge smile on his face. 

Matty loves the exercise equipment and works hard on his skills particularly in basketball and footy (he is a mad Hawthorn fan).

Like other children, Matty will continue to learn but will take longer to acquire new skills. He will learn in a slightly different way, requiring skills to be broken down into smaller, simpler steps and having more repetition and practice.  

Matthew has a cheeky grin, infectious laugh and is constantly interested in everything going on around him. He loves to tell us about what he has been doing, particularly in his cooking classes at school. Often there is a tell tale sign left on his shirt that tells us he loves eating his food creations as well!

Matty has made great progress since being with us. His attitude to activity and involvement has changed for the better and so has his fitness levels. Matthew loves to challenge himself on the stationery bike, where he is convinced he can win the Tour de France.

Matty engages with all the Heartwell kids and loves to give us a big hug when he leaves.

Yes, there is some magic about Matty!

Matty today on the bike.  Peace 

Patrick

Patrick is here now, working out hard in the gym.  He is in Year 9 at school and he is about to turn 15 years old.  This is the our fifth year of knowing Patrick and of him attending the Heartwell Foundation.  Boy, has he come a long way in that time.  In many areas.  He is now an absolute pleasure to work with and a great conversationalist.  I think it would be fair to say that his session time here at Heartwell, is mutually enjoyed.  That has not always been the case!

Patrick has Cerebral Palsy (CP).  CP is an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development.  Cerebral refers to the cerebrum, which is the affected area of the brain and palsy refers to disorder of movement.  CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three.  It is a non-progressive disorder, meaning the brain damage does not worsen.

Patrick has spastic diplegic athetoid CP.  This means his lower extremities are affected more than his upper extremities.  It also means by having athetoid CP he has trouble holding himself in an upright, steady position for sitting or walking.  For Patrick it also means he has significant involuntary movements, especially of his legs.  If Patrick’s legs are not strapped into his wheel chair they will kick out.  His feet will be constantly moving and unable to stabilise his body.  He takes medication to help control this movement and at the moment there is a noticeable difference in the “calmness” of his body.

Back to Patrick’s improvement over the years. 

Today a very different boy than five years ago came Through Our Door for his session.  Patrick has grown into an engaging and motivated young man, driven by (in his words) “limitless opportunities”.  As a 10 year old primary school boy he was not always an obliging happy chappy.  What we were asking him to do was, for him, boring, unnecessary and time wasting.  Skill work was hard, arm cranking was even harder, stretching was no fun.  Heartwell’s goal was to find an activity that Patrick could feel successful doing and allow him to be physically active.  We want him to develop a life long love of activity.  Thank goodness for perseverance (on both fronts).

Patrick now attends two sessions weekly with us.  He is concentrating on a resistance training program to develop his upper body strength and endurance.  He does interval work on the arm crank to further develop his aerobic fitness.  He has started to pop some nice bicep/tricep action which we are all quite admiring of.  The days of stalling and questioning seem far away and we are proud of Patrick’s achievements.  Keep going Patrick - onward and upward.

Too cute.  Patrick in 2007

Patrick today working that arm crank.

Today, working those triceps.

Today, pull down.

Cheese.

Today, I am focused!

Autism Spectrum Disorders

There has been many challenges and many rewards for us working with children with Autism Spectrum Disorders (ASDs). At the Heartwell Foundation many children with this diagnosis have come Through Our Door. ASDs are lifelong developmental disabilities characterised by marked difficulties for children in the following:

Social deficits
Communication difficulties
Stereotyped or repetitive behaviors and interests
Sensory sensitivities
Cognitive delays.

The word ‘spectrum’ is used because the range and severity of the difficulties people with an ASD experience, can vary widely. ASDs include Autistic disorder, Asperger’s disorder and Pervasive Developmental Disorder.

Research shows that about 1 in 110 children have an ASDs and that it is more prevalent in boys than girls. This is the case for the children “on the spectrum” who have come to us for a specialised Physical Education program. Over the years there have been many more boys than girls. There has also been a noticeable increase in the number of children referred to us with a Autism Spectrum Disorder in the last ten years.

The challenge for us at Heartwell is to adapt our programs so that the children with extreme examples of the above characteristics get good outcomes in their sessions. Our sessions by nature are very hands on and can often include a lot of touching and moving and turning of the children as we are teaching skills. This can be NOT fun for those children with high sensory sensitivity. As the teacher, let me tell you, you only need to forget that once and usually you wont need to be reminded again. The child somehow lets you know!

The rigid thinking and communication difficulties can also be a fun challenge. It takes a lot of negioation skills, patience and sheer cunning to get some of these children to do the things you would like them to attempt. If their mind is made up and they don’t feel confident to have a go, then steely perseverance is required by us. Some kids can get fixated on the one activity or thing they like most. That was the case with Andrew, for whenever he came for a session he would demand to play Basketball. We had done a bit of Basketball with him and he felt confident with the skills. Whenever we tried to teach him other skills, he would cry and carry on. We had so much more to teach him, but I can assure you in the end a great deal of each of his sessions involved Basketball drills (with a healthy mix of what we really wanted him to do)!

Then there was Steve. When we first assessed him for his program his mother mentioned he had a fixation on washing machines. It did not seem all the relevant to us for our work on his skills and fitness. It did however become relevant very quickly. For whenever Steve arrived he would rush to every door/exit looking for the “washing machine”. We learnt never to put a load on when Steve was due to arrive.

Then there was Neville. He had an amazing memory for dates. His social skills were quite good in a closed and controlled environment. He generally liked to speak to people-especially adults. His number one question was to ask of your birth date. Then he would recall it at every session. And he would tell you when you were born and he would tell you how many more days till your next birthday. And how many days since your last birthday! And how many birthdays you have had! Luckily he couldn’t tell you when your very last birthday would be (not at least, at the time of writing). He was quite amazing and a lots of fun.

We are so fortunate to have worked with these special kids.

Absent Friends

Sadly we have had some very sick children participating in Heartwell Foundation programs over the years.  These are children with tumours and cancers.  These children when they are referred to us, turn up our at door looking pale and fragile and unwell.  Often these children have had previous treatments of any combination of surgery, chemotherapy and radiotherapy.  They are coming to us to regain some strength and condition.  In some cases the children may have missed prolonged periods of school and have big gaps in their motor skill development.  In some cases they just need some activity which is fun to help get them back into the swing of things!

For us and I’m sure for these children’s families also, their child participating in a specialised Physical Education program is seen as a very positive step forward towards good health.  We at Heartwell tend not to think that anything bad could happen. 

For most of the children that is the case and their health builds on an upward curve.  

Sadly however there have been occasions where this has not happened, and some of the beautiful little children we are working with, have passed away.  It is difficult to articulate how distressing this is for us at Heartwell.  Usually with most of the children who come Through our Door we form a tight or special connection.  This is reasonable when you consider that we usually work with a child in a one on one situation during a couple of sessions per week.  In that time we often get to know the children quite well, we become friends.  We get to know their families.  Close relationships are forged. 

None more so then when we know that how sick a child with cancer has been.  The need to protect and help is very strong.  Respect is really all you can feel as you watch that child try as hard as they can to complete tasks.  The happiness as you observe improvements in skills or activity tolerance.  Then the absolute shock and disbelief when you are told the heartbreaking news that the cancer is back.  The sudden switch in our Heartwell program focus from teaching/developing to now having fun and playing.

There is nothing sadder than attending a child’s funeral.

I thank all the Heartwell families over the years who have allowed us to work with their children.  I am especially respectful to the families who allow us to spend such precious minutes with their child as they battle such illness.  To those who have passed away, thank you for the privilege of getting to know you and for ever becoming a friend of Heartwell and Scott and myself.

Happy Holly.

Holly was 14 years old when we first met her in 2004.  She had and still does have, the most endearing personality.  She was so sweet and happy every single time we worked with her over many years.  Holly has a condition called Williams syndrome.  Williams syndrome is a rare genetic condition caused by missing genes and occurs in approximately 1/10,000 births. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  People with Williams syndrome also usually have characteristic facial features. 

On the upside for Holly she was always cooperative and willing to have a go, as long as she felt safe and secure in what we were doing.  Her love of talking and chatting and her expressive language skills always made her Heartwell sessions fun.  Another Williams syndrome personality trait includes people being excessively friendly and trusting of strangers.  We usually had to keep an eye out to make sure Holly’s general exuberance for life did not “freak out” any of our milder mannered children that may have been having a session at the same time.

And Holly loved music.  She would bring her own CD’s in and we would have to play them loud and proud.  And she would sing along, loud and proud.

One of Holly’s medical issues were her internally rotated hips, coupled with shallow hip sockets and pronating feet.  As a result, Holly would often stand with her knees close together and feet wide to gain better balance.  One of our challenges at the Heartwell Foundation was to strengthen her lower limbs, so she could stand taller and have better balance.  Of it course all of that needed to be achieved while having fun!

One of our memorable achievements with Holly over the years was her learning to safely use the gym cardio equipment.  Holly had a great fear of being off the ground and a fear of moving and noisy objects.  Her parents were so delighted when they witnessed her jogging on the treadmill for the first time.  It was a great step forward for Holly to have a life long love of exercise.

Holly and Scott in the gym

Graham and his Leg.

We first met Graham in July 1997.  At that time he was 15 years old, 6 foot 2 inches and weighing in at about 110 kgs.  A big boy, with a gentle and caring personality.  When he spoke you would expect a loud booming voice to match his size, where in fact he was quietly spoken and I often had to lean close to him to hear what he had to say.

He was referred to the Heartwell Foundation by the physiotherapy department at RCH.  On almost 12 months to the day that we met him, he had had a left below knee amputation for bone cancer of his left tibia and tarsal bones.

Prior to that, he had complained to his Mum a few times of an aching leg, as growing kids often do.  I find even today, if I listen too hard to every ache and pain my three children report to me, I would have no time left to process any other information in my day.  There is a filter there, to help mothers get some things done!  When a bump appeared on Graham’s leg it was time to go to the Doctor.  He was very lucky that his cancer was contained in just the bones of his lower left leg.  By having his lower leg removed, he was able to go on and live an active life.

He was fitted with a “new leg” in the February 1997.  He had to attend a gait re-training program and then he was keen to start running and playing sport again.  At that time he had  poor fitness and he fatigued easily.  He needed to learn to balance his body under these new conditions.

As Graham developed confidence in his artificial leg he wouldn’t mind showing it off.  Once or twice out of the blue he kicked his leg off during a session, just for a reaction.  For example mid way through a skill session on kicking, off it flew - on purpose.   This created great amusement for him, but the kids around him almost died of shock!  

We had some fun with Graham.  We watched him grow up over those late teenage years.  He will be turning 31 years old this year.

Graham during a pool session in 1998

Jay and his Achievements

The attached is a story about Jay which appeared last year in the NoticeBoard magazine - (Assoc for Children with a Disability).
**I have now updated this post since my blog does not allow for attaching a pdf.  I have now attached the information from the above article in a document format.  Does not look as pretty but I hope you get gist of it.

Jay had a tumour on his hypothalamus which has been there since he was 7-9 weeks gestation.  The tumour was benign but affected his balance, coordination, and motor skill development.  When he came to the Heartwell Foundation in 2004 he had recently had surgery to remove the tumour.   At that time his skill level was basic and he had quite poor self-esteem. 

It is now wonderful to hear from his Mum, and know he is doing so well.  Please read on.......

From: April James 

Sent: Thursday, 29 April 2010 3:11 PM

To: scott@heartwell.org.au

Subject: Jay Ellis-James

Hi Scott and Julienne,

Jay at Run for the Kids 2010

I wanted to drop you a line because, although I'm sure the 3 years Jay spent with you guys is now a distant memory, the time he spent with you has never been far from our minds and I wanted you to see the lasting impact you've had in our lives. The time Jay spent with Heartwell taught him skills and discipline that continue to serve him well all these years on. 

Jay and I have done the Run for the Kids for 3 years now and this year we upped our participation from the little run to the big one. A massive ask for Jay, who still plods along at his own pace and could only run just over 1 km when we started training. But his pace was pretty impressive by the time the big day arrived, he ran 14.38kms in 1:48:51! Not only did he finish the race still jogging, but he told me that he only walked when he was having a drink stop, he even managed to keep up his pace over the Bolte Bridge!

As you can see from the pic, he looks pretty comfortable with his stride and happy to be there. I really think that this photo would never have happened without the skills Jay learned during his time at Heartwell. Without the lessons you taught him I don't think he would have had the confidence to get in there and give it a shot. 

And he already has a new goal, next year he wants to complete the course in under 1 hour 30.... I don't think that's going to be a problem at all.

He's still not very interested in sports, but he does participate in PE now and he still gets out on his bike and rides around, another skill I'm sure he only picked up because of the confidence you taught him. 

So I wanted to thank you again and let you know that we'll be forever in your debt.

Regards,

April James

Heartwell celebrates 15 years

The Heartwell Foundation celebrates its 15^th birthday this year.  Established in 1997, Heartwell has provided its specialist physical education and rehabilitation services to many hundreds of Victorian children with varying levels of need.  Co Founders and service providers, Julienne Espenschied and Scott Taylor have wide ranging experiences in physical education, working with children in this unique field, in and out of the school setting.

Their real passion is to assist children with illnesses and disabilities to access quality designed programs to increase their general health and fitness, fundamental sports skills and self confidence.

“The Heartwell philosophy is a simple one” says Julienne.  We see access, opportunity and participation as the cornerstone of our programs.  We deliver physical education programs to equip children with special needs with the skills and confidence for greater participation in school and community based activities”.

“We established the Foundation based on our work as a service provider with the Transport Accident Commission and the programs we conducted for children involved in road accidents.  Insurance covered the cost of many services including Heartwell, but we were getting referrals for many children who had similar needs but were not covered by insurance.  Children who had fallen from trees, had cerebral palsy, spina bifida or brain tumours received little in the way of compensation, so the Heartwell Foundation was established to meet this discrepancy in health care”.

Children involved in Heartwell range from 4-21 years of age with wide ranging needs and abilities.  Access to Heartwell programs occur at any time of the year via referral from a member of a child’s medical team or school.  Children undergo initial evaluations of fitness parameters and skills performance which form the foundation for their program and assessments are conducted regularly to monitor progress.

Seeing improvements in fitness levels and skills development is rewarding for all at Heartwell, but the biggest thrill comes from witnessing confidence and self-esteem increases.

“Having a child with a disability can present many intricate and interrelated health issues for parents and certainly decrements in cardiovascular fitness, strength, endurance and flexibility are high on this list.  We know how important general health and fitness levels are for children generally, but certainly for those with special physical needs, education about the benefits of long term exercise involvement is paramount”.

Heartwell Co-Founder, Scott Taylor puts it more succinctly.  “Heartwell programs are special and unique.  All kids need to be active and the benefits extend far more than just in physical gains. Parents will regularly say to us - thank you for giving my child the skills and confidence to participate in activities that they wouldn’t have necessarily attempted to be involved in beforehand”.

We have an unshakeable belief in the benefits of physical activity and have worked with some amazing children and families over our 15 year history.  The walls of the Heartwell gym are covered in the faces of smiling children each with their own life story to tell.  We at Heartwell feel very lucky to have worked with some amazing children who have taught us a lot about ourselves.  We look forward to continuing to offer Heartwell programs to many more families during the next 15 years.

For more details on the Heartwell Foundation you can visit www.heartwell.org,.au or contact directly on 9842 0396, email info@heartwell.org.au

Jay and Scott Taylor in 2006

Going For Gold!

Sam is Short Statured with Kyphoscoliosis.  Kyphoscoliosis describes an abnormal curvature of the spine. It is a combination of both kyphosis and scoliosis. Kyphoscoliosis is a musculoskeletal disorder causing chronic under-ventilation of the lungs and may be one of the major causes of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart need to work harder than normal).

Example of Kyphoscoliosis in a 10-year-old girl

What that meant for Sam is that when he was first referred to the Heartwell Foundation at the age of 13 years old, he was 123 cm’s tall.  He had already had three spinal fusion surgeries, along with hip surgery.  Further future surgery was planned for him to prevent more curvature of his spine.  

All of this caused Sam to have poor mobility.  He often had back pain and sore and tired legs.  So with all these challenges to face together we embarked on Sam’s Physical Education program.

Swimming for Sam, was ideal for many reasons.  It was non weight bearing, and took all that pressure of his spine and the muscles in his back.  It also provided an opportunity to develop Sam’s lung capacity, through ventilation exercise in the water.  He enjoyed the activity and made steady progress.  

Sam loved to play tennis, although it was not always easy for him.  So in addition to his swimming program we worked on his tennis skills and mobility around the court.  As he got older he also worked hard in the gym, doing some light resistance training and pushing himself on the cardio equipment.

He was part of the Heartwell team for three years.

The last time we saw Sam was on the television news and then again in the newspaper.  Turns out he has done all right for himself and become quite the celebrity!  Especially in the world of Short Statured sport.  He now represents Australia in the Short Statured Basketball Team. He is currently preparing for the Sixth World Dwarf Games to be held in Michigan, USA, from 3-10 August 2013.  

Well done Sam.  Bring home the gold.

Some Australian Boomers meets some players from the Australian Short Statured Basketball Team.

Boomers meet the Australian SSBT

Australian Short Statured Basketball Team

Hello Old Friends

Hello to all our old friends.

One of the things I am really enjoying about starting this whole blog thing is the re-connection we have had from many past families and children.  We have had literally over a thousand children come Through Our Door over the years of the Heartwell Foundation operation.  That is at least another thousand posts still to be written.  Phew!  

Many of those we have stayed in contact with, yet many drift on to new challenges in their life.  We often wonder what different children might be doing today, how they have faired, and what life has held for them as adults.

It has been wonderful to hear from some of these old names and faces as this blog has been forwarded around Melbourne.  Please keep passing this on to friends and family.  That way we can be assured that the people who need our service know where to find us.

For now however, I would like to say a “Big Hello” to:

Joel O, Tracy N, Charley B, Cameron R, Joseph C, Adrian S,

Great to hear from you guys, please stay in touch. 

   

1997

1998

2006

2007

Katherine and another good session.

Just had another good session with Katherine!

She is 12 years old and very sweet.  She has had a diagnosis of Global Developmental Delay (GDD) which means she requires a modified curriculum and much support when she is at school.  This diagnosis means her motor skills, her speech and language, her cognitive skills (the ability to learn new things, filter and process information, remember and recall, and to reason) and her social and emotional skills (including interacting with others) can all be delayed or developed at a different rate to her friends.

What this all means for Katherine is that in the school grounds it can be tough for her to keep up with her peers when they are running around and playing.  It can be difficult to have good self-esteem and confidence when you have GDD.  It can be difficult to just “fit in”.

When Katherine is with us at the Heartwell Foundation she displays a strong sense of belonging.  She does fit in and she works well.  Today she trained on the treadmill, then the cross trainer, then did a few minutes on the stationary bike.  She was puffing.  Then we moved outdoors and continued our work on her throwing and catching skills with small balls.  This was achieved through a simple game of one on one Cricket, where she also practiced her striking/hitting and hand-eye coordination.

Just had another good session with Katherine!  

Katherine and myself, waiting for Mum to come and pickup.

The Prince of Wales meets Heartwell

Back in 2005 the Heartwell Foundation children and staff had the opportunity to meet Prince Charles the Prince of Wales.  Don’t ask how this opportunity presented itself, it would be too complicated to explain.  More than likely it was one of those situations where someone knew someone, who knew someone else, who thought it would work well.

And it did.

Picture the following group  all gathered on the main courts of the State Netball Centre.  Most importantly, seventy children from the Heartwell Foundation all with varying levels of physical and cognitive function, also a respective parent (or two and even grand parent if they had wangled it with us), a team of Heartwell staff and The Prince of Wales himself along with his large entourage.  That included all the media personnel following his tour and the massive security team that also was accompanying him.  It was a mixed bag of “pompous poms” and excited Australian children, all glad for the opportunity to miss an afternoon of school.

Our challenge was to set up an activity circuit where all the children could participate and have some fun.  We had to cater for the kids in wheelchairs, those on frames, those with poor balance and those who could not see.  All this had to appear to be running smoothly so that when His Royal Highness walked through it would look impressive and not like the mad scramble it really was!  HRH was supposed to be impressed by this Australian program which provides physical activity for children with disability.

Somehow we pulled it off and had lots of fun.  It was a great experience for us to meet someone so famous and the parents were excited too.  I don’t think the children were all that impressed by HRH (with all due respect to Prince Charles) for them, it was all about the fun.  

All except for one of our teenage boys, Nathan.  Fifteen years old, six feet tall with a developmental delay that allowed him to speak his mind and act on his impulses.  The Heartwell team had been given very strict protocol on approaching and speaking to HRH.  In fact it was only Scott, my fellow Director, who was given permission by the entourage to come within 3 metres of The Prince of Wales.  All this had been documented and discussed well before the day of the event.  All the staff and parents understood that this strict protocol must be adhered to.  Unfortunately we forgot to tell Nathan.  Unexpectedly he left his group, marched up to HRH and before the security could intervene thrust out his hand and said “ Hello Prince Charles, my name is Nathan-Welcome to Australia!”

Whereby Prince Charles took his hand and said “Thank you Nathan thank you”

It was a happy and memorable moment. 

Triplets

Recently the Heartwell Foundation had a referral for two children, brother and sister, who were born as triplets.  Both of the children have been diagnosed as having Cerebral Palsy, spastic diplegia.  They are 12 years old.

Being the mother of 11 year old twins, I had immediate feelings of empathy for this family.  That is, I understand the work load associated with a multiple birth and the chaos of the early years.  The stress of feeding, bathing, lack of sleep etc.  It does not necessarily get easier as the years roll by either, because by then the children need constant taxiing to their after school sports, activities and friends, and so on.

Then I made the phone call to discuss the referral with the mother of the children.

My feeling of empathy was quickly flooded by my inability to even imagine how this amazing family survive.  The third triplet is on Life Support requiring 24 hours, 7 days a week of oxygen.  She requires constant suctioning to clear her airways and is fed intravenously.  One parent needs to be with her at all times, and there are frequent trips to the RCH.  The two children with Cerebral Palsy have very different health needs.  They want to run and be active.  They want to improve their balance and coordination and reduce their ankle and knee pain.  They want social interaction and fun!  

I can’t imagine how difficult it must be for these parents to feel that they meet all these varying health needs of their precious children.

It certainly made me stop and think before complaining about taxiing my tribe to where they need to go!!

Kris

Kris had his first day of Year 12 yesterday.  A big day for any kid.  He is really smart and quick witted and we know he will do well this year.  He is a “tough cookie” our Kris, and he consistently works hard against the odds, that are sometimes stacked up against him.  See although he is quite academic and achieves good results in the classroom, Kris’s body can sometimes make the going hard work.  Kris has Cerebral Palsy - moderate to severe Spastic Diplegia.  This results in him having limited mobility and poor balance.  He walks with two single sticks or uses a wheelchair for long distances.  It is difficult for us able bodied people to imagine getting from classroom to classroom under those conditions, and still have the energy for learning.

Kris almost needs a gold watch for his time spent with us at the Heartwell Foundation.  This is his 10th year of participation!  That even surprises me as I write it.  He started with us when he was a cute little nine year old.  Although he was small and seemingly frail, even back then you got a sense of his determination and drive to be successful at all things.  Over the years we have watched him grow tall and strong (and noticed last year he started to shave!)

Kris in full flight,
chasing down a ball.

An avid cricket follower Kris was here when a few years ago Shane Warne visited the Heartwell Foundation.  There was no way we could keep him away from that little opportunity.  Another happy memory is of Kris last year participating in his school cross country event.  In a display of absolute grit and courage he walked about 500 metres to the finish line.  What a champ!

Good luck at school this year Kris, you are a legend.



Kris (far left) meets Shane Warne along with some other Heartwell Foundation crew.