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Our Story – A mum’s hook

Jul 02 2019

When my son Seb was a little boy, he loved the ocean. His tiny wetsuit kept his little body warm while he jumped through the waves, and he loved building sandcastles.

We decorated his room with fish and everything under the sea. Then, as he got older, and grew into an exceptionally caring and brave child, he loved policemen, and for many years, whenever anyone asked him what he wanted to be when he grew up, he always said that he wanted to be a policeman.

When he was diagnosed with an intellectual impairment, muscle hypotonia, joint hypermobility, and congenital ptosis, life changed forever, and our future seemed daunting.

Then, like a flashing buoy bobbing on the water, I heard about the NDIS, and while I didn’t know very much about it, I could see that it might be just what we needed.

I went to all the workshops, conferences and information sessions I could find. I took notes, collected pamphlets, printed every report Seb had ever had, and kept it all in my little black folder, taking it everywhere with me. Clinging to it like a life preserver. I asked questions, talked to everyone I knew, and even people I didn’t. And finally, when I was ready, I made an application to the NDIS.

When I look back at the day that the woman from the NDIS came over to help us build a plan, I see her surrounded by bright white light. She was sitting in front of a window. But no seriously, she was so lovely, understanding and compassionate, that she could literally be an angel. We unpacked Seb’s goals as we carefully considered what a good life should look like for him.

After I received the call from the NDIS, I literally broke down in tears. I’d had hopes and dreams of what my son needed in his life, and suddenly, in a moment, it looked like some of those dreams might become a reality. Our rescue boat had arrived. It was a life changing moment for him, and for me.

Since receiving funding, Seb has been able to start therapies with a physiotherapist, speech pathologist, an occupational therapist, and other specialised services that are helping him achieve his goals of increased independence and functioning. With the help of his amazing team of professionals, we are already seeing improvements.

He’s been able to get out of the house without me and just feel like an almost-normal teenager. The smile on his face as he walks in the door from those outings with his support workers is priceless. He’s working toward functioning as a productive member of the community and he’s loving it!

I’m getting through each day without imagining escaping to a deserted island, and am loving being a mum in a whole new way. Our precious time together is more relaxed and way more fun. I’m even getting to have an occasional hot cup of tea.

His funding means that he can be supported to practise his new skills every day. He can work on using time and counting money, as well as doing routines like getting himself ready for school.

We’ve been able to find things to make his body stronger, his mind calmer, improve his posture, and to keep him safe in his environment.

I’ve been able to get out of the house too, and Seb’s been loving seeing me get back into my SES uniform. He feels a special pride at seeing me serve the community and achieve my goals. The pride he has for me is almost as much as I have for him, when he puts on his own uniform and tries his best to keep up with the other ADF cadets.

Now as a teenager, Seb loves cars and space, and shows exuberant excitement whenever he sees unique cars, or when there are clear skies at night.

Life is still not easy. Let’s face it, it probably never will be. But thanks to the NDIS it’s a whole lot closer to normal than it ever has been. And as we embark on the next part of our journey, with a strong hull and the sails set, we are so grateful.