Very Special Kids
Very Special Kids
In Remembrance there is life
Initially we may shed tears
that they have gone.
Over time,
we learn to smile
because they have lived.
All about 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 Blinman
18th September 1992 - 21st September 2008
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 very short of breath and couldn't run around and play sport which he loved. But is 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.
Very Special Kids
Very Special Kids
Please donate to this wonderful organization.
Being friends with a child with special needs
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.
Best Friend's - David and Pierce
My Best Friend - Pierce and David
This is dedicated to my son and his best friend, Pierce who passed away 21st September. Very Special Kids supports families throughout their experience of caring for children with life-threatening illnesses, from diagnosis through to recovery or bereavement.(Music UMG: You're My best Friend By Queen)
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Pierce and David having fun
Good Neighbors Good Friends
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 or most 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.
Donations
I am donating all money raised from this lens to Very Special Kids.org Australia.
Songs for Pierce
Evanescence - "My Immortal" Official Video
From the album: Fallen Released: 2003 Buy it on iTunes: http://tinyurl.com/d9wnoo
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Very Special Kids - on motorbikes and trikes!
2007 Very Special Kids Day
Video of N3W Trikes at Very Special Kids Day at Cardinia Reservior Victoria Australia
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Poems for a Grieving Parent
Dedicated to Sue and Ray - Parents who are survivors
My Mom Is A SurvivorMy 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
Stories of Love and Understanding for Those Who Care for Children with Disabilities
Chicken Soup for the Soul: Children with Special NeedsRaising 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
For future special education teachers.
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 for Baby
Signing 4 BabyWould 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
Best Mates on holidays
Helping Children when they lose a loved one
Treating Trauma and Traumatic Grief in Children and Adolescents
Amazon Price: $24.25 (as of 07/16/2009) 
Guiding Your Child Through Grief
Amazon Price: $11.25 (as of 07/16/2009)
When Someone Dies: A Childrens' Grief Workbook
Amazon Price: $2.00 (as of 07/16/2009)
Children and Grief: When a Parent Dies
Amazon Price: $25.20 (as of 07/16/2009)
Healing Activities for Children in Grief
Amazon Price: $16.47 (as of 07/16/2009)
When I ruled the world
Coldplay - Viva La Vida
Official Promo Video for the fantastic new single from Coldplay - 'Viva La Vida' Taken from the #1 Album 'Viva La Vida (Or Death And All His Friends)' in shops now.
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Helping Children with grief
Treating Trauma and Traumatic Grief in Children and Adolescents by Judith A. Cohen, Anthony P. Mannarino, Esther Deblinger
This is one of the first books to present a system more...0 points
Healing Activities for Children in Grief by Gay McWhorter
This book is an activity book designed to help cou more...0 points
Children and Grief: When a Parent Dies by J. William Worden
Drawing upon extensive interviews and assessments more...0 points
Where Are You? A Child's Book About Loss by Laura Olivieri
Where Are You: A Child's Book About Loss is a kind more...0 points
35 Ways to Help a Grieving Child (Guidebook Series) by Dougy Center Staff
If you know a child or teen who has experienced a more...0 points
Remembering your loved ones
Organisation you can help with your donation
- Very Special Kids
- Very Special Kids supports families throughout their experience of caring for children with life-threatening illnesses, from diagnosis through to recovery or bereavement.
- Royal Children's Hospital Melbourne
- The Royal Children's Hospital is a specialist paediatric hospital and provides a full range of clinical services, tertiary care and health promotion and prevention programs for children and adolescents. The hospital is the major specialist paediatric hospital in Victoria, and also cares for children from Tasmania and southern New South Wales and other states around Australia and overseas.
- Starlight Foundation Australia
- The Starlight Children's Foundation give seriously ill children a reason to smile by granting them a "Wish". Pierce was granted a wish many years ago when he and his family went to Disneyland USA.
- Auslan Sign Bank
- Signbank is an interactive dictionary of Auslan (Australian Sign Language). Auslan is the language of the deaf community of Australia. Whoever you are; a deaf person, deaf student, sign language interpreter, student of Auslan, or a parent of a deaf child, we invite you all to explore our visual language. Auslan is growing and changing all the time. By using Signbank and providing feedback you can help share and build our language.
In memory of Pierce
You fought so bravely to the end. You had a amazing 16 years with wonderful parents and sister, Carice, who gave you so many great opportunities to enjoy life to the full.
Time for riding scooters!
Children with Special needs in the news on Google
- Summer Bible school focuses on children with special needs
- So far, about 10 children with special needs have registered for the event, which will run from Monday through Friday, Smith said. ...
- Free tennis camp helps special needs children stay active
- This clinic is a little bit special. Just Another Tennis Clinic is a free tennis camp for children with special needs, and it's the only special-needs ...
- Weapon Found in Fla. Couple's Killing
- Mr. Billings, 68, and his wife, 43, were well known in the area for adopting children, many with special needs. Nine of the children, three of them ...
- Dealing with extra attention while out with your special needs child
- When you are out and about with your special needs child chances are you will attract attention. You or your child may feel uncomfortable with all of the ...
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Please leave your comments
Please rated this lens
Please leave a comment if you knew Pierce or know a Very Special Kid
aj2008 wrote...
Am just revisiting the lenses in the Children and Parenting Group to say what a great selection of lenses we have on there and I am really pleased this is one of them! You have been Blessed by an Angel
Posted May 20, 2009
Sue Blinman wrote
Dear Sharon, Alan, David & Natalie & all,
I have not had the strength to look at this site until now. As I write with the tears streaming down my face, I know that Pierce was and still is missed by us but also many others.
To me Pierce will always be my "small boy" - born 965 gms he certainly did grow up into a remarable guy. It's now more than 6 months since Pierce has died and every day something reminds of him. The hair replacement ads on TV always make me laugh as Pierce use to drag Ray to the TV and tell him he needs this! His empty room is still as he left it on the 31st August 2008. I never ever thought it would be the last he was home.
Loosing a child is so hard, but now having lost two is unbearable. I know Pierce is with his twin brother Frazer looking over us and wants us to live life to the fullest, but we need a lot more time to move forward. Thank you to all that have posted notes and helped Very Special Kids. Sue
Posted April 24, 2009
QueQue wrote...
Wonderful article! I'm very moved. Pierce seemed like a jewel.
Posted December 11, 2008
len16 wrote...
There was a lump in my throat while reading this. In life, I always believe everything happens for a reason.
Posted November 02, 2008
Jo wrote
A great tale of life and friendship!
Posted October 15, 2008
Showpup wrote...
What a wonderful lens. So full of love. Pierce sure seemed to be a great gem and it's nice that you were able to share that with others through this lens. Looks like he had a great outlook on life that we could all learn from.
Posted October 12, 2008
Rachel wrote
Pierce was a great boy. He was a fighter and never let anything get in the way of letting him live his life to the fullest. Pierce will always be remembered!! I met pierce only once..but that one time was great.. he made me laugh and we had a lot of fun playing on the green machine. I will always remember you. R.I.P Peirce!!! Love you. xoxoxoxox the Mountney family
Posted October 11, 2008
Jemma wrote
Pierce has ben such a solider all his life, his fought many a batlle and won them all coming home with a smile. His been such a bright soul, all his life. No matter how ill he was or what disbility he had, he always had such a wide grin across his face and took life as it came. Its hard to think that he wont be around anymore, but I know he will always be watching over me with that lovely grin of his. The angels wont cry anymore because your up there making them as happy as oyuve made us, Pierce. I miss you more and more everyday and i love you dearly
Posted October 10, 2008
Antonella Ascenzo wrote
Sharon - you should be very proud to have a "little angel" as a son. Although David must be hurting he will probably never fully understand the joy a special friend like him would have brought to Pierce in his short life. My condolences to all.
Posted October 09, 2008
aj2008 wrote...
What a beautiful lens and what a wonderful tribute to Pierce and his family.
Posted October 08, 2008
oneskms wrote...
I have no words which can describe this - 5*, favourite and lensrolled to one of my lenses which displays a banner for the make a wish foundation. These truly are very special kids
Posted October 08, 2008
EverythingMouse wrote...
What a wonderful lens. My middle son was born with a heart defect - we were very lucky though as although he spent many months in ICU he is now well.
You have been Blessed by a Squid Angel
Posted October 08, 2008
Uncle David wrote
Having know Pierce over the years I have great memories when I visited David's house, I always heard a little knock on the front door with a happy boy on the other side wanting to know if his friend could come out to play. Whether the answer was yes or no, he was always polite and cheerful. Rgds Uncle David
Posted October 07, 2008
Debbie wrote
A great page and tribute. Makes you stop and think how lucky you are. Our thoughts are with David and Pierce's family.
Posted October 07, 2008
Vanessa Henderson wrote
What a lovely tribute. Both Pierce and David are very lucky to have had each other - what a wonderful friendship. Condolence to all - hope you are coping as best you can.
Posted October 07, 2008
Brett445 wrote...
A didnt know pierce but what a wonderful tribute. I sincerely hope you can generate some nice income from this page to donate to these very special kids
Posted October 02, 2008
Martina Turner wrote
I had the good fortune of meeting Pierce on several occasions as he and my son Jamie enjoyed there stays at VSK together.
They both had infectious personality's, once you met them you never forgot them. Some people have a lasting impression on others, my heart goes out to Sue Ray and Carice and to your son who has lost a wonderful friend i send you my thoughts and best, in helping your son through this journey of grief.
You have done a great page well done.
Posted September 30, 2008
Colleen wrote
What a beautiful tribute. My heart goes out to Pierce's family - the sun shone a little brighter when that cheeky boy was around! Hope David & Natalie are coping OK, also.
Posted September 30, 2008
