Mamamia Team Monday 28 November 2011 8:45pm

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At www.info4carers.com , you’ll find a new book called You are Not Alone – A Carer’s Journey written by Michelle Rhodes and Tanya Dennis, two Mums of special needs children.

Tanya writes: “In mid 2002, our son Jaden Dennis-Marler was born at Westmead Hospital in Sydney.  His birth was a natural one without any complications after a labour of six hours.

At Day 23, he suffered his first serious seizure, turning an awful colour of blue.  We raced him to Westmead Children’s Hospital in an ambulance.  After a week or so we returned home on medication.  However, this pattern of seizure, ambulance and hospital was to repeat itself for may years to come.

We’d had all the normal prenatal screening tests done and they had shown no problems.  Like everyone that begins this journey, we were completely naive to the world of hospital and disability.

It wasn’t until six months of age that we finally received a diagnosis of 1p36 Deletion Syndrome.  This is a chromosomal disorder caused by the deletion of a band of DNA along the short arm of chromosome 1. Chromosome 1 is the largest human chromosome and represents about 8 percent of the total DNA in human cells. The “p” refers to  the “petite” (short) arm of the chromosome. “36″ stands for the location of the deletion along the chromosome.  It is estimated that the syndrome occurs in one of every 5,000 to 10,000 births.

Confused?  So were we.  The numbers, letters and medical terms seemed tumble out of the Doctor’s mouth so fast. What it meant though, was that Jaden would be unable to feed himself, walk, or talk.  He’d need constant care and medical attention for the rest of his life. So I became a carer, I never took up full time employment again.

After a while of wrestling with the disability system in NSW, we eventually moved to Queensland where we had more family and where we found a wealth of services to access.

I made many friends with other Mum’s of special needs kids through Jaden’s school and inside hospital waiting rooms.  As they shared their stories, it became apparent that all their stories and the services they accessed needed to be documented some how.  Everyone had a bit of the puzzle, but there was no central place where you could start.

Teaming up with Michelle Rhodes, we worked with the Cerebral Palsy of Queensland to bring this documentation together in the form of a book and website, www.info4carers.com.

We have written You are Not Alone – A Carers Journey to provide guidance and advice to parents, carers, friends and family, centred on a child’s early years, from birth to six years of age.

Since starting this project, we always envisaged that this book should be given out freely to parents and carers throughout Queensland hospitals, via respite service providers and be made available for download via the website.  We hope that some of the information, notably the federal based services, can be used Australia wide but please cross-check with your relevant state government or authority. Please drop us a quick note via our website, www.info4carers.com with any information you wish to share.

We’d like everyone to take a look at the book.  If you have family, friends or neighbours who have children with special needs please take the time to review some of the stories.  We’d also like to promote an initiative of caring for the carer.  It may be as simple as catching up with someone over a coffee, showing them the book and asking how they’re doing.  It’s easy to assume carer’s know what to do and that they’re on top of it.

We’re also hoping that the book might go some way toward breaking down some of the stigma attached to special needs children and society can see them for the rare treasures that they are.”