Very Special Kids

Very Special Kids services are offered free and without obligation by a team of professional family support workers and hospice carers, who have backgrounds in social work, psychology, family therapy and nursing. These staff are supported by more than 200 trained family volunteers and hospice volunteers. The organisation operates Very Special Kids House, Australia's first hospice for children, providing respite and end-of-life care.

Who started it?

In 1984 two families who were going through the trauma of their children dying came together to support each other in their time of need. At the time, there was little support available for families who had children with life-threatening illnesses. The families decided that no one should feel as alone and isolated as they did and that support was needed to help them through the ordeal of caring for seriously ill children. The organisation was established in 1985.

What is the nature of the support that Very Special Kids provides?

Very Special Kids support is a total approach to care that embraces the physical, emotional, social and spiritual needs of the family from the point of their child's diagnosis through to recovery or bereavement. Very Special Kids provides a range of physical, emotional, social and spiritual support, which is offered:
* holistically
* centred on the family
* to all Victorian families of children with life-threatening illnesses
* with specialist staff and more than 200 trained Family Support Volunteers
* with the engagement of the community

What does the term 'life-threatening illness' mean?

These are serious illnesses that gradually (or in some cases, not so gradually) worsen. Life-threatening illnesses take many forms but they are always devastating for the families. They include (but are not limited to): muscular dystrophy, genetic disorders, spinal muscular atrophy, rare syndromes, degenerative neurological conditions, congenital cardiac anomalies, cancer and leukaemia.
Approximately 60 percent of the children that Very Special Kids support have high medical needs, with genetic and neurodegenerative conditions, and 25 percent have cancer. The remaining children have a variety of conditions.

Are the children who come to Very Special Kids at a critical stage of the illness?

Some are, but others have been part of Very Special Kids for years, just like the Blinman family. Many of the families Very Special Kids support have a child whose condition will gradually deteriorate over a long period of time, requiring a high level of ongoing care for many years, which places increasing strain on families.

How do people come to Very Special Kids?

Very Special Kids can be contacted directly by telephone on 03 9804 6222 (Melbourne, Australia)or 1800 888 875 by any family in Victoria who has a child with a life-threatening illness and needs help. Families are also referred through Melbourne's Royal Children's Hospital, the Monash Medical Centre, the Victorian Paediatric Palliative Care Program (a partnership between Very Special Kids, the Royal Children's Hospital and the Monash Medical Centre), community health providers and numerous other support organisations.

Here is their website.
Very Special Kids

Pierce and Frazer Blinman were born prematurely 16 years ago. Sadly, Frazer died shortly after birth. The Blinmans remember it as an incredibly busy time because even though Pierce was doing well he was still tiny and needed lots of special care. The focus was getting Pierce well enough to come home and there wasn't much time to grieve for Frazer.

After four months, Pierce came home and continued to do well but four months later he caught a cold. That cold turned into a virus and he was soon at the Royal Children's Hospital. He had a very serious respiratory illness and doctors told Sue and Ray that Pierce was going to die. Sue, having recently experienced the death of her first-born son, says she knew that Pierce was not going to die, he was going to live. And he did.

As a result of this virus, Pierce had only one lobe of his lungs, instead of five. He had epilepsy and as a result of his treatment he is also profoundly deaf. This brought many complications and meant many visits to the hospital including a major operation to have a Cochlear implant. "But he survived this," Sue said.

Pierce would get very short of breath and couldn't run around and play sport which he loved. But he also seemed to adapt to this. Despite all of this, Pierce had a great sense of humor. He loved soccer, footy, basketball and his play station. Riding his bike, scooter or skateboard with my son, David.

The Blinmans heard about Very Special Kids in hospital from another mum. "Very Special Kids
has been there for us for the past 12 years. "You need that someone to talk to, to be there and to be supportive." Sue said. "Having a child with a life-threatening illness makes or breaks a family. It's hard work, but Very Special Kids helped us maintain the loving relationship we have."

When a child has a life-threatening illness, it can place many challenges on everyone in the family. Pierce had a life-threatening illness and his family had to ride the unpredictable rollercoaster that such an illness brings.

Very Special Kids helped the Blinman family through all this and are still helping them through the passing of Pierce. They help many families through camps, activities and respite care at Very Special Kids House.

Pierce and his family were the face of the Piggy bank Appeal last year, which is Very Special Kids biggest fund raiser. Here is a photo of Pierce breaking a huge piggy bank to reveal the total of last year's appeal.

Pierce finally lost his battle to live on Sunday 21st September 2008.

My son David was only three and half when he became friends with Pierce. As neighbors the children would play out in our quiet street with each other. David and Pierce shared a love of toys cars and trucks, riding bikes, scooter and skateboards.
Although Pierce was deaf he learned to speak and was able to hear with the help of his Cochlear implant, or bionic ear. David never seemed to have any trouble understanding Pierce and Pierce usually made himself understood to David.
Pierce used sign Language and David knew which signs meant all the important words, like let's go ride our bikes!
The boys were good mates and adapted their play activities to suit Pierce's needs. He would ride his bike around the street until he became tired and out of breath then it was inside to play with the toys cars, watch a video or DVD and in the last few years, play on their PlayStation.
Both families always knew where to find the boys as they were in each others house all the time.
David never saw Pierce as a child with disabilities, he was just his friend who he loved to play with.

We are blessed to live in a street where all the neighbors know each other. It was like this when my parents were young and I remember when I was growing up playing at the neighbors houses in our street. Times have changed and now people are wary of others.
Thankfully I live in an old fashioned street where we all know each other and have an open door policy when it comes to all the children playing in our houses. Now we are all sharing the loss of our very special kid, Pierce, who knocked on our door to ask come in to play or most of the time just walked in!
We let balloons go in our street and watched them fly high into the sky after we celebrated his life at a wonderful memorial service on 10th October.

My Mom Is A Survivor

My Mom is a survivor,
or so I've heard it said.
But I can hear her crying at night
when all others are in bed.

I watch her lay awake at night
and go to hold her hand.
She doesn't know I'm with her
to help her understand.

But like the sands on the beach
that never wash away...
I watch over my surviving mom,
who thinks of me each day.

She wears a smile for others...
a smile of disguise!
But through Heaven's door I see
tears flowing from her eyes.

My mom tries to cope with death
to keep my memory alive.
But anyone who knows her knows
it is her way to survive.

As I watch over my surviving mom
through Heaven's open door...
I try to tell her that angels
protect me forevermore.

I know that doesn't help her...
or ease the burden she bears.
So if you get a chance, go visit her...
and show her that you care.

For no matter what she says...
no matter what she feels.
My surviving mom has a broken heart
that time won't ever heal.

By Kaye Des'Ormeaux
October 15, 1998

My Dad is a Survivor

My dad is a survivor too...
which is no surprise to me.
He's always been like a lighthouse
that helps you cross a stormy sea.

But, I walk with my dad each day
to lift him when he's down.
I wipe the tears he hides from others.
He cries when no one's around.

I watch him sit up late at night
with my picture in his hand.
He cries as he tries to grieve alone,
and wishes he could understand.

My dad is like a tower of strength.
He's the greatest of them all~!
But there are times when he needs to cry...
Please be there when he falls.

Hold his hand or pat his shoulder...
And tell him it's okay.
Be his strength when he's sad
Help him mourn in his own way.

Now, as I watch over my precious dad
from the Heavens up above...
I'm so proud that he's a survivor...
And, I can still feel his love~!

Kaye Des'Ormeaux
October 16, 1998
Dedicated to the dads who have lost a child.

More Poems by Kay can be found here.
Kaye Des'Ormeaux

Chicken Soup for the Soul: Children with Special Needs
Raising a child with special needs is a lifelong commitment that is as unique as each person who embarks on it. Written by a variety of authors who share in this distinctive relationship, Chicken Soup for the Soul Children with Special Needs offers a glimpse into the lives of others who are on a similar path.

These stories provide insight, comfort, and connection with others who have walked this powerful and transformational journey. The authors of these candid stories relate their own experiences of adjusting, reaching out, and flourishing and share their universal worries, their tears, and the laughter that come with this extraordinary relationship. Most important, through these stories, you will be guided with the wisdom of fellow parents, caregivers, and those with special needs to help you be the very best parent or caregiver you can be.
Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for Those Who Care for Children with Disabilities

Young Children with Special Needs (5th Edition)
As the only volume in the field to provide in-depth treatment of early childhood special education, this edited book offers broad-based coverage of all aspects of special education for the young from a theoretical-developmental perspective. The authors provide an exceptionally thorough discussion of how children develop and what can go wrong while giving future special education teachers a solid "knowledge-content-applications" approach from which to teach children with special needs from birth to 5 years old. Significant attention is paid to core issues-special education's historical foundations, the growth and development of the discipline, working with families, assessment and intervention, and the use of technology. For future special education teachers.
Young Children with Special Needs

Signing 4 Baby
Would you like to teach your child sign language. It is not only deaf children who can learn sign language.
Signing 4 Baby is a home study program. It will unveil hundreds of hours of research, plus the best proven materials taken from multiple trail and error studies to give you a simple PROVEN system that you can start using today!
Signing 4 Baby