This post was originally published in the Defence Special Needs Support Group Newsletter.
Later that day after some testing, it was discovered that our daughter had a rare life-threatening condition that required us to be flown on a helicopter to our nearest capital city.
After what seemed like endless testing, we had confirmation of the diagnosis. A rare lifelong, life threatening condition. We had to learn to administer oral medication three times a day to a newborn, how to inject her with an emergency injection and she had to have weekly blood tests. We were in a strange city where we knew no one while living in the special care ward. It was a crash course in special needs parenting to say the least.
This was just the start of a long journey of learning to live with a child with a chronic illness and working around life as a Defence family.
Since she was born all those years ago, we have posted interstate five times. Every time we post I meticulously study maps of routes to hospitals from potential DHA houses and research GPs, paediatricians and various specialists. The biggest challenge I have found is to find confident nurses who can take blood from children.
My daughter is now at a stage where we have blood tests every three months, which is much easier than weekly, but still a battle to find someone you can trust when you move around frequently. I learnt to be organised very quickly. We managed to overcome a severe needle phobia.
My daughter has changed schools several times.
At each new school I have made an appointment to go in and talk with the teachers about her condition and what to do in an emergency.
I have also gone in at the beginning of each school year and done this to ensure they know who she is and what to do. Schools often have new teaching staff.
I tend to stick to the whole ‘Be alert not alarmed’ type narrative to not completely stress school staff out but just to let them know what to do. I have a one-page medical action plan with her photo and the basics of what to do plus our contact details and those of her doctors.
When she was younger, I researched day-care centres meticulously. It was always difficult handing her over to people I didn’t know. I didn’t have family in the location like some other families do. Normal for a Defence family. It’s always hard writing down a name on an emergency contact when you are newly posted.
Every time we visit a new GP I also have to advocate for my child.
As she has a rare condition, often the GP has only heard of the condition perhaps at university and would need to do some reading themselves in order to help support us. I often find it’s extra hard having a chronic health condition as it has other implications for simple illnesses. So, it’s good to find an understanding GP.
I make full use of the ADF Family Health Program.
This has saved us a lot over the years in gap fees and other things not covered by private health insurance or Medicare.
My biggest fear has always been that my daughter will become unwell when my husband is away. It has happened a few times and although at the time I was screaming on the inside with fear, somehow, I managed to stay calm and work out what to do.
Our other daughter spent quite a lot of time crawling around on emergency room floors as we simply didn’t know anyone to leave her with.
There was one time we were away at a caravan park for New Year with a group of Defence friends and our daughter became very unwell. We were all dressed up in fancy dress. My husband and I were dressed as grey nomads, old timer clothes, grey in our hair and my daughter was dressed as an angry bird. We had to drive her 25km to the nearest hospital which was a tiny regional one. We carried a very sick little angry bird in to the emergency room and asked to see someone immediately.
She needed an emergency IV. They took us in but due to the rare nature of her condition, the doctor didn’t realise the seriousness of the situation. I had to ‘strongly’ advocate for her to get the treatment she needed. I used my best ‘loud mum’ voice despite looking like a crumpled mess.
In the end she got the treatment she needed, and all was well. What I did have to do was leave our other daughter, who was dressed as a fairy with our amazing ADF friends who cared for her while we went to hospital. This wasn’t the first time we had to ask for help, and I am sure won’t be the last.
These are my top tips for managing a special needs child and Defence life.
- Make yourself known to the school or day-care and be honest, clear and specific about the needs for your child.
- You may be eligible for a Carers Allowance which can help financially – and potentially a health care card which can help with the cost of medications.
- Depending on your finances consider joining the ADF Family Health Program. This has Fringe Tax Benefit implications so do your research.
- Prior to posting, investigate doctors and hospitals in the new location. Ask on other Defence forums for recommendations. Often the Defence community has the best knowledge! If your child sees a specialist, ask them to recommend someone.
- Connect with DSNSG, consider connecting with a support group specific to your child’s condition. Other parents who have shared experiences can be a wonderful support.
- Get your child a medical alert bracelet. This is important especially if you are leaving your child with someone they don’t know.
- If you feel like it is overwhelming and perhaps you are not coping, make sure you seek out counselling for yourself too.
- You are the best advocate for your child. As they get older teach them gradually to advocate for themselves (where possible).
Our life has been difficult at times with many added challenges, but I can honestly say having a child with special needs has allowed us to meet some amazing people and also have a special understanding for others in similar situations.
An ADF Mum, with a special needs child
It’s always OK to ask for help.
Defence Special Needs Support Group
dsnsg.org.au 1800 037 674
The Defence Family Helpline
1800 624 608
Open Arms formerly Veterans and Veterans Families Counselling Service (VVCS) 1800 011 046
Defence Families of Australia can also advocate for you.