Recently we were privileged to watch our 17 year old teenager participate in his school debutante ball. It was a formal event, with all the preparation, the suit hire and fitting, the dance classes the practise of the presentation, everything that goes along with getting ready for a deb ball, getting a present and a haircut. It was a wonderful event, everyone dressed up girls looking beautiful and the guys very handsome.
I will take you back a few years in fact 17. Our young man was born 3 months premature. The weather was stinking hot in Newcastle and had been over 40 degrees all week. Without going into all the detail he was born at John Hunter Hospital and spent two and a half months in NICU. At 36 weeks we brought him home and our journey began.
Hospital visits, therapy, doctors, early intervention and eventually pre-school and the school which consisted of The Hunter Orthopaedic School and regular school.
Ten years ago we decided to move to Victoria, with an opportunity to have our own home purpose built with space for our boys. Little did we know that every state is different.
The first few months we were trying to get our head around the education and health system. It was so confusing to us and we were wondering if we had done the right thing. A few months later we were referred to Kids Plus. Finally something which made sense.
Matt screamed through the door and was initially not a happy camper. It was no different at school he screamed through every door and gate and if any one said hello on the way. He was missing Newcastle and people from there. A combination of whole lot of things, change of school location, eye surgery correction, finally Botox into tight hamstrings, second skins, Kids Plus location change and Matt stopped screaming.
Finally he was happy and began to enjoy school and therapy. Matt has severe Cerebral Palsy and after years of weekly therapy at Kids Plus, he is a happy content young man who knows all the staff and responds really well to therapy.
He knows stretching stops him from hurting and botox into his tight arms and legs has helped him to maintain his walking.
He also happily wears second skins on his arms which helps his function. He walks in a crocodile walker and despite predictions that he would lose his walking ability he continues on. No, he doesn’t walk independently he needs his walker and his wheelchair. My philosophy is if you have to have one then get the coolest one you can find.
The Kids Plus team have provided Matt with Physiotherapy, Occupational Therapy, and Speech Therapy all of which he regularly needs. Having therapy is part of our life now and Matt enjoys the friendly environment.
He also has music lessons, goes horse riding with Riding for Disabled, surfing with Disabled Surfers Association and regular swimming. Keeping Matt busy and allowing him to participate in lots of different things has helped him develop self esteem and self worth.
Back to the Deb……… He walked into the deb with his beautiful partner! They looked gorgeous that tiny premature baby grew up and against all odds walked, in his walker, into his own deb with the biggest smile.
His grandmother loved this deb! His brothers said how proud they were of him. Every favourite teacher, aide and therapist, had a dance with him and at the end the principal said to him “Matt you look like every other teenage boy at the end of their deb look at your shirt pulled out, sleeves rolled up, jacket off, tie undone. You look like you have had a great time.” (And he had and I thought YES!)
So what is this about? It’s about a family with a child with a disability who at times have been incredibly overwhelmed but in that they have continued to look forward, from time to time dust themselves off and keep on being positive and give all their children the best life they can.
Matt’s brothers have finished degrees at University, one a Bachelor of Media and the other a Bachelor of Music. Matt continues his education at Barwon Valley School. He has regular Botox through the Victorian Paediatric Service. He sees local Paediatricians and doctors as well as the Royal Children’s Hospital.
I Jo have decided to just try and be the best mum I can to all three children and if my job in life is to look after Matt, then it’s my absolute pleasure and the best job in the world. Matt is our delight and everyone who knows and works with him becomes his friend. He says hello to everyone he knows and is well known for trying really hard.
Maurice, Matt’s dad is currently doing a course in disability himself and hopes to also work in the disability area. I hope that in writing this down that it might help other families to look forward to all the happy times your child will give you!