Jodies Journey
Queensland
Australia
jodie
Special Family
FAMILIES WITH SPECIAL NEEDS KIDS
When we (as a family) started down the roller-coaster ride of discovering that our first daughter, was not quite normal; it was a raw and difficult time for all of us.
This was in 2003, when our little rosebud, was almost three. We had left the US to live in Australia in late 2001 and medically it was wise choice (even though it was hard to leave family). Little did we know at the time, what lay ahead of us in terms of her disabilities and my future illness.
We noticed that Julia did not look at us or make eye contact from the start (our second daughter did all of this, very early). Seeing as our special needs daughter was our first child, we knew no different. By the time she was 6 months old, her developmental delays started to show and because of this, I avoided taking her to mum's/babies group in the local neighbourhood, etc.
It was always heart breaking as I watched other kids crawling, trying to furniture walk and looking at their mothers and communicating with their eyes. Our little girl did none of this. She just sat there smiled a little, but not much else. She did not seem to want to try all these new, exciting activities.
At about 11 months, we discussed our concerns with our then GP, who referred us to the local child health centre. From there we progressed to a children's developmental unit at a local hospital, for approx. the next year. It was during this time that a young doctor said to us 'Have you ever heard of Autism?'--yes, we had heard of it....but knew little about it and what that possibility meant for the future of our first daughter. We were vacant about the meaning of the whole thing.
Those around us, knew more than we did and would say all sorts of interesting comments to make us feel better: 'Don't worry, she'll wake up one day and be fine' or 'it's just a phase she's going through, she'll come good'. People often say these things to calm themselves and try to calm you.
The pilgrimage from this point on was obtaining a proper diagnosis and this was written by a local peadiatrician, who diagnoised Moderate-Severe ASD (Autistic Spectrum Disorder). We had also started to notice her R eye wandering at 2 years of age and had been seeking peadiatric opthomology assistance fairly early, where she was diagnoised with Strabismus. To correct her R eye turning, her eye checks showed that she had difficulty with her sight and was fairly shortsighted (Myopia). Since this time, she has progressed to thicker and thicker glasses....we try to now get her glasses with thinned out lenses, to avoid the coke bottle effect.
I remember the devastation we felt when that first doctor mentioned the word Autism to us. It really blew us away. As Julia grew, we started to realise that she was having difficulty breathing when she had a upper respority infection, she was then diagnoised with Asthma. She has been hospitalised several times for respitory problems.
In the end, after much discussion, we just decided to go with the recommendation and Julia was enrolled in a special school, because she had a possible second disability.
Only this year have we had a physiotherapy report indicating that she also has problems mainly with poor balance and low muscle tone or Hypotonia, which are common within Autistic children. Despite all of our daughter's difficulties, we are believing that her life will excel and exceed the expectations that many of these children are wrapped in.
Julia is such a joy to be around, so loving, so innocent and so beautiful. We love her so, so much and thank God for her everyday.
In 2014, We have also recieved a diagnosis for Anna of 2 medical conditions and an SLI (Speech Language Impairment), which is a recognized speech disability.
Both our girls are blessings, even if they need extra care.
Click here for: International Disability Centre, Joni & Friends.
MANY DISABILITIES:
ONE FAMILY
Many of us as parents of children with special needs have all been down the same road, from suspicion of developmental delays to the clinics, hospitals, peadiatricians, specialists and all sorts of other staff that try to make our everyday, a little bit easier with these challenging kids.
Whether your child was born with an obvious physical disability from birth or it became more apparent as time went on, as parents we feel the pain, strain and uncertainties become daily hurdles and unexpected gems.
The little steps our special kids take towards a milestone, make these little triumphs remarkable -- as we fight to see them become and be treated as normal people in a difficult world.
(Go to this Wikipedia page to read about it):
(and read more about caring for an autistic child):
Many of these are fantastic and are often assisted by families of those parents dealing with special needs kids. It is often difficult for parents and indeed the whole family to go into the community, participate & advocate OR indeed to get a break.
Leaving your special needs child with people whilst you have some extended time off can also be perplexing and difficult to arrange. We did this recently for the first time in 8 years, the first time since Julia was born. It was both exhausting and a relief to get 7 days off. In our country (Australia) funding may be available through your local government disability office for full-time respite care, whilst you are away. It can be a full-on endevour, but well worth it.
We found coping with our girl and now girls (our younger 'normal' girl is quite strong-willed), easier with grounding and foundation.
The stats for parents of kids with disabilities, in terms of holding their marriage together is grim. Divorce rate for these married parents is as high as 80%, add on top of that continued intervention, education, therapy and anxiety about the future of your special child and things can be very difficult to bear.
If more children are born into the family, looking after a 'normal' or sometimes another disabled child, becomes incredibly hard, yet again.
We all seek comfort, through many different avenues. When we seek comfort through our faith in God and those encountering the same experiences, we find joy & company, a kindred heart, full of understanding.
There are a variety of agencies that assist families with special needs services, ie: respite, therapy, community access, medical equipment and funding for all sorts of items and purposes related to disability.
Obtaining some of this funding and these services can be difficult, depending on which country you reside in. Some families move countries to obtain better government funded support for their disabled kids.
We love our special needs child and the people who input into her precious little life.
Jodies Journey
Queensland
Australia
jodie