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Fighting for the support Marcus needed

For Ann, Marcus’ primary carer and grandmother, getting the support that Marcus needed has not been easy. In her own words, Ann takes us through the lows and highs of Marcus’ development. From his regression to being non-verbal at 18 months to Marcus beginning talking again and enjoying his outlook on life in just a couple of years. Along the way, she has fought hard to discover what is best for Marcus and pushed hard to get the funding Marcus needs to unlock his potential.

“Marcus was developing neurotypically until he was 18 months old. At that time, he lost all of his words, he had about 20 words, and Marcus also lost all of his social contact with other people.”

He was in a world of his own

He seemed like he was an unhappy child and presented as a very reserved little boy. He appeared to be very serious at all times, and there was no joy in his life. He had constant meltdowns where he could not navigate life on life's terms.

Marcus wasn't able to meet simple activities of daily living that would be that of a normal two-year old, and it got worse as the months ticked on. He became markedly different from his peers.

I met a friend in the park, and she suggested to me that I get a diagnosis for Marcus.

The public waiting list, to be diagnosed, was over 12 months. So, I found the money to get it done quickly – it was $1,500. It was an involved process, that went for several days, with a lot of contact with a speech therapist and a professor in psychology. The result was that we were told that Marcus had autism and it was of the severe variety.

For me it felt like I had been punched in the stomach.

It felt that the wind and the hope had been knocked out of me, and that persisted, I gave myself 24 hours to sit in the grief of the loss and then I realised that action was needed for Marcus. We followed the recommendation stemming from the diagnostic report to seek help from The Benevolent Society. I had the help I needed with the NDIS.

They’ve helped get additional support

“Over the time, with The Benevolent Society, we have identified what additional support Marcus needs. Having said that, getting the NDIS to fund it hasn’t been easy. We have gone back on several occasions, getting Marcus’ plan reviewed to make sure he gets the supports he needs. Let me say, it’s not been simple, but the support from The Benevolent Society has been unwavering. With their help, I have now got the right people working with Marcus. It hasn’t been easy, but their support and willingness to keep going to get the right outcomes has made a real impact.”

He's had a miraculous turnaround.

When he first came to The Benevolent Society, it looked like Marcus was going to never speak again and most significantly it looked like Marcus would never be happy.

Now I hear Marcus' voice two and a half years later, thanks to The Benevolent Society, I don't stop hearing his voice. He can tell me how he feels. The first time that Marcus told me he was happy, it felt incredible. And I felt a debt of gratitude to The Benevolent Society, who helped me get what Marcus needed from the NDIS, and most importantly allowed this child to name his feelings.

 

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