Living with disability is hard. Living with your own disability and having children with disability is very hard. As a mum-of-two in my twenties, a fly in/fly out husband, and a degenerative neurological disorder I was beginning to realise just how hard this journey was going to be – endless appointments for my two boys, one with Autism and the other profoundly hearing impaired, while my own body began to fail me. I had always been very pro-active, organised and involved, not wanting to be a bystander but a participant in our lives, but it is hard to keep that up when you are forced to realise your limits and you are unable to do the very things you previously took for granted – it was hard enough to juggle things without my problems being thrown into the mix!
It can be very hard to stay positive when you realise that you need regular therapy appointments for yourself on top of your children. The control over your future that you loved is suddenly out of your hands, and then the questions arise: How do you keep your house running? How are you going to fit in time for yourself? How are you going to afford it? How do I accept help when I have always been determined to do everything my own way?
I was lucky enough to meet a Rocky Bay employee by accident who encouraged me to find out what help might be available to me. I was able to answer some of those questions and several months down the track things for us have changed for the better!
We were able to access short-term support worker services to help lighten the load on my shoulders and the flexibility was a relief. I was able to pick the service I wanted to suit what was most important to me and pick the person that delivered it. I was able to have time to focus on what was important and not worry about who would be turning up to my house each week. I have been able to start accessing therapy services that fit in with our lives, which has coincided with my son receiving short-term therapy services, and they all work together as a team to support us. I am not telling each different person involved the same thing repeatedly – they actually communicate and try to make things easier for us! Whether it be seeing a Physiotherapist to try and keep up my strength and decrease the rate of my disease progression, or having an Occupational Therapist come and assess my need for walking aids and then helping me find what I need, or having a Therapist visit my sons school to give his teacher advice, or finding somebody to help coach him in things that most kids his age learn from their surroundings, I know they will be there to support me as my needs change. I have committed to helping myself and they are just holding my hand along the way.
My perspective has definitely changed. I am no longer consumed with worry about how to juggle and keep all of the balls in the air at once. I am able to think more positively and make time for other things that are important to me. Disability will not define my life, I can still be pro-active, organised and involved, all those things and more. I can spend more time doing fun things with my family, rather than being dragged down by our schedule, I can make time for them and feel that I am not giving them a second rate childhood with a mother that is so tired and stressed by the end of the day that she doesn’t want to play. I feel confident that I can make a difference in other areas, like joining in with disability advocacy programs and trying to make this journey easier for others. I am making time for myself other than spending it with therapists – I have been able to join a book club that links me up with other women in a similar situation to myself, instead of feeling isolated. I am hopeful that my son will participate in the community as others would, playing sports and making new friends.
You can lead a happy, balanced, fulfilling life with disability, and we have finally found it.