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 paediatrician, who diagnosed 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 paediatric opthomology assistance fairly early, where she was diagnosed 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 an upper respiratory infection, she was then diagnosed with Asthma. She has been hospitalised several times for respiratory problems.
We had a lull of about 2-3 years with no further medical discoveries, until late 2008, when we were able to pin-point through testing that she also had a confirmed mild intellectual disability. We were always not too sure about that, until we could test her properly. We were advised when she was 4 1/2 years old to enrol her in the local special school, rather than a 'normal' school.
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 received a diagnosis for Anna of 2 medical conditions and an SLI (Speech Language Impairment), which is a recognised speech disability.
Both our girls are blessings, even if they need extra care.
Click here for: International Disability Centre, Joni & Friends.
WHY SO MANY DOCTORS?
After investigation by my state medical board- I was verbally informed that their opinion was: 'I was not at fault'. Rather they're opinion was that it was the poor quality of care I was receiving from my new primary GP that was the source of my delayed diagnosis. The fact that he was not treating me or investigating my problems fully, caused me to search for answers.
Click here to read an article, relating to my medical difficulties.
Every symptom I had was not linked together, test results were not followed up, medical notes were not sufficient and his medical knowledge about what I was dealing with was 'nil'. Indeed, he had no desire to assist me to find the source of all my health problems & symptoms.
I was working full-time in the down-town CBD (Jan/05-Sep/06) fighting with pain, fatigue & new symptoms on a constant basis. I was visiting my primary GP, after work and others on days off or sometimes weekends to get help, when my primary GP would not assist me.
Then at night, I was looking after the family, it was 11 months of terrible pain and heartache. I remember visiting 1 doctors surgery in the CBD twice - during my lunch break....I was desperate and was also fobbed off there too (in the end, seven surgeries did the same to me). I recall that as my back pain and fatigue worsened - my thought was that 'it must be my uncomfortable chair'. I thought often & was constantly comforted by the fact that I worked close to city hospitals and thought that if I collapsed, at least the ambulance would be able to get me there fast.
Traveling to/from the CBD in a train to work daily or sitting on any hard surface was very painful and I felt terrible physically all over....it was hard to get up @ 5am every morning to commute 1 hour to work every day and then walk 15 minutes to my work (at the time, Boeing Australia) and repeat it at the end of the day. Physically I looked OK, and having no diagnosis meant I had to continue. One particular day we all had to walk up a long incline to reach a work function, by the time I got there - my heart beating erratically and I felt like fainting, but I had to remain composed.
I was also involved in the Boeing Environmental committee. Myself and one of my male work colleagues/committee leader, were invited to go to Steve Irwin's memorial service @ the Australia Zoo. It was broadcasted to billions worldwide and we felt honoured to be there in person.
I was only 1 month away from being diagnosed and the pain travelling up there and sitting in a hard seat was unbelievable - yet no matter who I told, nobody listened. People around me would tell me to 'shut-up' about it and stop talking about it, I knew there was something wrong with me and often felt completely hopeless & empty, not knowing which way to turn.
I couldn't get rid of infection & seemed to catch anything floating around. In order to stay awake, I self-medicated on huge amounts of caffeine, just to keep myself going through the work day. I worked for 3 aviation related companies in the CBD prior to diagnosis, from January/05, through to discovery of my condition in late September/06.
Then the journey began....(Jodies Triumph)
Eleven months prior to diagnosis (November 2005) when I finally felt a lump in my R breast - I knew in my head & my heart that something was not right & I then launched my own search to find out what was wrong. I have always known that not only was negligence involved, but also a deeper issue that millions grapple with globally. YOUTH can often be a setback when trying to get a diagnosis. I look well most of the time and I look about 25, when really - I am much older. Not only are cancers in the 18-40 age groups usually more aggressive, but also masked by the way a younger person looks. Therefore delayed diagnosis is also a huge issue for this age group.
(I was 35 when I was diagnosed and did not appear sick, still now, even on my worst days, I look beautiful and youthful and thus this can be a problem, when relating my pain and body symptoms).
After 21 doctors visits with 7 different doctors, in desperation I visited my ER & thus our discovery, treatment commenced.
After treatment and approx. 6 months of recovery, I decided to return to full-time work & I hung on for an additional 8 months, until my health declined again & it was time to look at treatment for a second time (relapse 01).
Most people could not believe I was returning to try work again - what I had been through was extraordinary, but I wanted to start again in my previous full-time job. I had determined that this Lymphoma was not going to retire me....not just yet anyway.
It was when I had first stepped into remission (March/07) that I started to explore my options regarding legal action or an investigation.
I started on the internet and everything I read just sounded like my previous experiences. I started to contact lawyers with expertise in medical negligence. By November/07, I had returned to work, but did not give up in trying to get to the bottom of why I was treated so poorly, in trying to achieve diagnosis.
Relapse started again in January/08 and I left work for more treatment in August/08 (relapse 01). Subsequently, regardless of whether I worked or not, I continued to pursue a legal case or investigation, even as I recovered from the first lot of disease and through the first relapse.
To come to a final resolution, it took me 2 years & 3 months of consulting, discussions and investigations with both the Health Quality & Complaints Commission & The Queensland Medical Board to finally get an outcome, in my favour.
I had little support from all angles and was aware that many people around me had told me that chasing it was a 'waste of time' or 'not good for me'. But, I continued (on my own) as felt I needed closure and also to ensure this did not happen to any other patients, in the interest of public safety.
To this day, it is my firm belief that due to the medical negligence and subsequent delayed diagnosis, I received - my health status has remained in a relapsing pattern. The deeper the disease, the harder to medically treat it and keep it away.
It is now my hope that I will TODAY be rid of all tumour and disease, to start a new life.
THE INVESTIGATION
Overall, two lawyers located in my city, looked deeply into my situation, both after my first incidence of disease & also the first relapse. Both of them came to the conclusion that we could prove negligence, but could we prove, the 2nd part of a health negligence case (called causation)? Finally it was my decision...but there was another option and this was the way I decided to go.
We commenced investigations of all the doctors I had consulted with, through the Health Quality & Complaints Commission. My complaints were dismissed at first, but after consulting with the state ombudsman - I decided to request an internal review.
A review was granted and an 'independent clinician' was asked to review my primary GP's medical notes.
Finally, after many months - the independent clinician's thoughts were in & what he found was nothing but shocking. My gut feeling was right & many clinical standards were not followed or adhered to, causing my desperate search for help & allowing me to descend deep into disease.
Eventually, my case was then referred to the Queensland Medical Board and the results are below.