We bring you a series of short reads from women just like you.
Source Mamas raising their kids with disabilities. The tears, the triumphs, the raw and the real.
What’s your name and where do you live in Australia?
My name is Joanne and our family lives in Underwood, Queensland.
What’s your story, who are you and how did you arrive at this point in life?
What’s my story, well that’s such a big question! Like many Source mamas, this journey we are on is one that we would never have chosen.
Having said that, would I change who my children are? No.
Would I change the hardships we face, the fights we have to have, the injustices we deal with? Most definitely.
I have lived in the era where you would say “I have three children on the autism spectrum”. Of course, that’s no longer the appropriate language and I’m still getting my head around the person-centred language. However, I am grateful for it because it shows how much the needle has moved towards understanding and inclusion.
Since my children’s first diagnosis, we have made friends with intellectual disability, anxiety and mental health issues, epilepsy, immunity disorders and ptsd. I have become an expert health, education, mental health and disability advocate. To add to this list, I say I am an amazing admin officer, receptionist, and semi-expert support coordinator, plan manager, speech therapist, occupational therapist, physiotherapist, roster coordinator and activities officer; they are only a few of my unpaid jobs!
I now also teach in the inclusive education space and hope I can make a difference in someone else’s life.
I got to where I am today not necessarily by choice, but I do embrace the life I have now, wholeheartedly.
How has being a special needs mama changed you or your lifestyle?
I guess it would not be inaccurate to say that being a special needs mama has changed everything about me and my lifestyle and this has happened in phases and will continue to do so.
There was an overwhelm phase which came with new diagnosies.
The I can do it myself phase when my then husband struggled to get on board and everything was about the kids.
The I am by myself (but also not) phase, when I was a single mum, with the support of great friends (still have these amazing people in my life).
The I have a village phase, which is a great place to be and where I am now.
These changes have led to the understanding that I don’t have to it by myself and it’s ok to ask for help, its ok to have moments that are tough and to acknowledge them, and that this isn’t a reflection on how much I love my kids.
It’s also ok to accept that spontaneity doesn’t really exist as a special needs mama.
I have learnt, and am still learning, to let go of the mama guilt (it doesn’t do anyone any good) and lastly to ensure that “me” is not only ok, but essential to ensure that I can be the best version of myself for my kids. Having said that, it was really challenging to fully do this without the support of my second husband who came into my life and made that a reality.
What’s your biggest challenge right now?
My biggest challenge right now are the inflexible systems that have square boxes to fit our peeps into, when they are anything but square.
What do you do for you time?
Me time involves coffee with friends, girls weekends, pole fitness and aerial classes, park run (with the kids), snuggle time with hubby (when the kids are in bed) choir and most definitely singing loudly in the shower.
How do you cope with the really difficult days?
A good vent, a good cry, good wine and chocolate but mostly a hug and calm conversation with my hubby (who is always my anchor in any storm).
What brings a smile to your face?
When I see my kids smile or reach their goals. When I reach one of my personal goals (like finally getting that pole trick I’ve been working on for 18 months), just being silly and trying to not take life too seriously when I can.
What do you need?
Less red tape and drama in my life, more of the people who “get it” and get me. There’s always the space for more laughter.
What are your hopes for the future?
That in 5 years time my children will be living independently, with their different levels of support and that they will be living their best lives and that I will be then adding travel back to my list of things to do every year.
More importantly, that by the time I am no longer here to advocate for my children and their needs, that the systems that exist will mean they are still living their best lives.
