"I hope by sharing my journey this may help you with yours" .... Janet


My daughter Charlotte was a first child.  My pregnancy was fairly standard and despite the fact my labour led to an emergency caesarean, Charlotte had apgar scores of 9 and then 10 at birth.  She seemed like a happy, healthy little girl. 


It didn’t take long for me to notice something was different. 


I was going to a Mother’s group every week and my girl was just not the same as the other kids.  Her eye movements, her noises and the way she interacted with me compared to the other kids interacting with their mothers.  


At the age of 3 months I brought up my concerns with my Child Health Nurse at our local hospital as we lived in a small town in North Queensland.  She referred us to the visiting Paediatrician for an appointment.  The Paediatrician only visited every couple of months as she had to travel down from Townsville to conduct appointments.  This led to 3 monthly appointments with Speech and Occupational Therapists, also through the hospital. 


When I fell pregnant with my second child, Charlotte was 16 months old and nothing had changed.  I immediately saw a bit of panic within the medical team and Charlotte was sent off for Chromosomal tests just to rule out anything for the new pregnancy.  Not once did anybody supporting us lead us to believe this might not correct itself with age.


Nobody gave us any guidance on what we should be doing, or could be doing.  I started doing a lot of research on my own.  It slowly lead me to believing that this was a lot more serious than what I had been hearing.  


Charlotte got further and further behind the other kids over the next couple of years.   We also had a few health scares.  Charlotte unable to communicate in any way with us kept getting sick and it wasn’t until she was at the point of being extremely sick we knew anything was going on.  One night I heard her making strange noises and went to check on her.  I found her in her cot mid seizure. 


We got her raced to the local hospital where she was given drugs to stop the seizures and to drop her temperature as we were told she had a febrile seizure.  She hadn’t even seemed sick before this as she was so quiet and still even on a good day.  We were sent home and 1 hour later had to call the ambulance again as she had a second seizure that left her paralysed down one side.  This was a very rare side effect called Todd’s Paralysis.  The doctors at the local hospital had never seen a case of it. 


She was transferred to the Townsville hospital until the paralysis subsided and they could run more tests.  This was a catalyst for so many tests.  She underwent an MRI, a CAT scan, an EEG and a genetic test.  Every single test came back normal.  We still kept getting the message of maybe she will catch up which in my heart and head I knew was not the reality by this stage.  


Being in a small country town made it so much harder as I had no family support and had no idea where to turn.  She was enrolled in ECDP (Early Childhood Development Program) with Education Queensland when she was 3 1/2.  This was amazing for us.  Charlotte learnt some basic sign language which finally gave me a way to communicate with my little girl.  She finally started with a lot of prompting becoming slightly verbal. 


It was a life changer for me.  I still felt like I had been thrown off a 10m platform into a pool without knowing how to swim but finally felt like my head was sitting just above the water.  


When Charlotte was 5 my marriage ended and I was suddenly a single mother of a 5 year old special needs child and a 2 year old son.  It gave me the chance to move to Brisbane and finally have the support of my family again.  Unfortunately it made things worse again with Charlotte.  In North Queensland her care was infrequent appointments but in Brisbane we struggled to even get on waiting lists.  It took almost 2 years to finally be able to see a Paediatrician.  At this point she was 7 and I had a new partner and we were struggling to get any help anywhere.  After a few appointments, when Charlotte was 8, we finally were given a diagnosis. 


It hasn’t explained anything but has finally put her into a box for the paperwork needed to give us some support.  We weren’t entirely happy with our Paediatrician, and I think having the right Paed for the right family is a big plus but it was certainly better than it had ever been before.  We finally got paperwork filled in for Disability Services QLD and wasn’t that another headache.  As a special needs parent I have never seen so much paperwork in my life.  Disability Services had a meeting with us to assess what help we might need, that lead nowhere and again we felt like we were in limbo.  Our family made the decision to have a sea change and move to the water on the Gold Coast.  It was a great decision and a not so great decision in hindsight. 


It led up to changing our Paediatrician and he was the perfect fit for our family.  Charlotte love being on the water and watching the boats and occasionally dolphins swimming past the back of our house.  She also started at a new school which was brilliant for her.  The staff were amazing and we had so much support from them.  The downside was again being away from my family and the support they offered.  We also for the first time in our lives had external support in the form of respite.  Charlotte got 3 weekends per year in respite which we looked forward to so much.  It gave us a chance to spend some much needed one on one time with my son and occasionally with just the two of us.    


I found myself in a downward spiral.  My partner who became my husband during this time was incredible but he travelled a lot for work and I could go for days or weeks at a time not leaving the house except for dropping my son at school and picking him up. 


I had struggled previously with my own mental health issues and it again was rearing its ugly head.  Four years after the move down there it became apparent that as nice as it was having dolphins in the backyard it wasn’t practical for our family and we moved back.  At that same time after 4 years on a waiting list on the Gold Coast we were also offered 1 day per week of vacation care. 


Unfortunately it wasn’t approved until the week we moved back which was incredibly frustrating.  So now we are back close to my family, still driving to the Gold Coast to see our preferred Paediatrician and again at the bottom of every list imaginable for respite and support (made even worse by the fact that with NDIS coming in nobody is really doing anything on this front). 


We are very fortunate to have my family.  One of my sister’s takes Charlotte for a sleepover once a month for a night so we get a regular break. 


Life for us will never be easy.  We can’t plan for the future like most families. 


My husband and I can dream, but not plan, for the overseas travel when our children grow and move out of home.


We have a life of uncertainty and stress in wondering what the future will bring for our girl and ourselves.  We do however want to use our experiences and struggles to help others feel that they are not alone. 


This is a very isolating journey, and we need to pull together and support each other.