A Mother's Perspective

The following letter was received, from the mother of a child suffering from Autism Spectrum Disorder, in support of the Lions' Autism Project:

The Sutherland Shire

NSW 2229

August 2011

To The Lugarno Lions Club Inc.

I am writing to you after reading the article in The Leader titled “Lions will target autism” a short time ago.

I am writing to simply say THANKYOU, THANKYOU and THANKYOU.

March 2010, saw the worst day of my life. It was the day that a doctor told us that our gorgeous son   (who was 28 months old at the time), had Autism.

Our family has been under enormous strain and stress ever since.

Life was turned upside down , it became endless phone calls, appointments, doctors, forms, research etc. etc. etc.….all on top of our ongoing grieving.

Within 8 weeks of diagnosis I had an in home ABA (Applied Behaviour Analysis) Therapy running. We recruit, train and employ University students to come to our home and conduct the therapy. Our little man currently does 21 hours a week.

I applied through APRA to have my Superannuation released early on compassionate grounds and that gave us $41,000.00 which funded the first year of therapy. That as well as the $12,000 FaHCSIA   funding has now been spent. We have spent well over that $53,000 trying to help our son in the past 18 months. We are now using money borrowed from the Bank, and we are in enormous debt. Once that runs out our only option is to sell our home, or stop our son's therapy. That terrifies me.

The only way I lay my head down each night is to know we are doing ALL we can to fight this monster – which is Autism.

We also have a gorgeous older daughter, who I know is heartbroken and suffers as well.

The emotional stress goes hand in hand with financial worries, worrying if you are doing enough? Too much?? Etc. etc. No one seems to understand. Your marriage suffers as you try to get through each day.

As for me? I do not sleep. I have lost about half of my hair and I am covered in eczema – all thanks to stress. Yet I continue to fight, and will do everything I can to help my baby boy.

I have kept your article in my diary, and I just wanted to say thankyou on behalf of every family struggling like us. You are a wonderful organisation and your efforts are truly appreciated.

Please know if I can help you, or be a voice, talk at a meeting or give some insight from a mum / family perspective – please just let me know.

I hope one day in the future to be a family advocate for Autism. But for the time being my focus is my son.

THANKYOU again Lions. You are all good people.

Warmest Regards,
Mrs S