“I have a beautiful boy who I love unconditionally and would do anything for, but caring for Quinn is a lot on top of caring for my other children, my house, my husband and my paid work. (I work part-time as a teacher.)
I’m grateful that I live in a country that has the NDIS. It has been useful for Quinn’s therapies but when it comes to big ticket items or respite there are definitely some gaps.
Quinn was my second child conceived via IVF. We were in our bubble of bliss when he was born and everything seemed normal until he was about nine months old. Quinn didn’t seem as alert as the other bubs at mother’s group and would not respond when we called his name.
I stumbled across a post on Facebook about the early signs of Autism and realised he ticked some of those boxes, so off I went to a paediatrician. He ordered some tests but the metabolic testing at that stage revealed nothing out of the ordinary.
It was a chance observation of Quinn in a medical waiting room by my GP who noticed he was holding toys up close to his eyes which set us on the right track. After an examination an ophthalmologist suggested Quinn might have a metabolic condition and requested more testing, under anaesthetic.
We went on a diagnostic odyssey and it took several more months, specialist appointments and various delays until we learnt that Quinn had Mucolipidosis Type 4.They are only 100 known cases of this rare genetic condition in the world. Quinn is vision-impaired, non-mobile and cognitively delayed.
In our first appointment with a specialist we were told there was no cure, and no treatment. The doctors could help us manage Quinn medically but basically, we were left on our own to navigate this new world of disability.
The NDIS was just starting at the time and learning our way around this system is like a part-time job – we have to know exactly what to ask for, which buzz words to use, attend seminars and go to endless therapies and appointments.
At first, I was told Quinn could access respite when he was seven but when he turned seven, I was told we would have to wait until he’s in high school. I applied for emergency respite once when I was injured and tore my ACL but by the time my respite funding had come through I was already back on my feet.
We rarely get to do much as a family. My oldest son plays rugby but Quinn gets upset by the noise when people cheer. I usually end up sitting on a hill with him and watching the game from there.
School is when I get my break (Quinn attends Sir Eric Woodwood School in St Ives). My other two children get time with me mentally but physically my hands are never far from Quinn.
My husband works long hours in his own business which allows me to work part-time. When he’s home, he’s on task helping with the kids. He has zero time for himself. If anything he’s the biggest victim in all of this.
Yes, we miss out. We holiday separately and rarely go anywhere together as a family. My husband and son went to Samoa on a rugby tour. I would have loved to gone too but Samoa is not wheelchair-friendly,
Eating out is a challenge. My oldest son went to a birthday party at a restaurant and said: ‘Mum why don’t we ever go to a restaurant?’ (We usually get takeaway.) We decided to make a booking at this particular restaurant. Quinn wasn’t happy that day and screamed endlessly. We couldn’t work out what was wrong, as he’s non-verbal. The people sitting next to us moved. My husband had to walk Quinn up and down the road outside to calm him. My daughter realised Quinn was getting all the attention and started to play up. My oldest started to discipline her (but he’s not a father) and started shouting. The food came, my husband and I sculled our cocktails and we took our food home.
We later got a carer through Carer’s Gateway and returned to that same restaurant leaving Quinn at home. The food was great but of course we felt guilty the whole time because Quinn wasn’t with us.
We’ve been to the movies, where I sit on the floor and park Quinn near the exit. I position myself where I can keep one eye on the exit and one eye on the screen and my children. But it all falls apart when one of them needs to go to the toilet!
I’d be upset if I had promised my other two children to go to a show or an experience and I couldn’t see it through or we had to leave because of Quinn. Because of this my choice is usually just not to go.
We don’t expect handouts but yes ticketed experiences would be amazing. It would be reassuring that you are financially not out-of-pocket if you have to leave unexpectedly.
If I could leave Quinn with a carer and know he was getting a quality experience then I could go out with my family guilt free. If a carer could come either standalone or as part of an experience that would also be amazing and everyone in our family would benefit!”