COMMUNITY eNEWSLETTER

Our family, and my beautiful little girl are such hard work, and we require so much effort that any other school in Australia would have asked us to leave years ago. They would have said, in the nicest way, “Go away, you are too hard, too much trouble”.

Our story is one of just surviving, just hanging on by our fingernails. We have needed a lot of help to do that, and most of it has come from Giant Steps.

This isn’t a story of how hard our life is, but rather, how lucky we are to be part of the Giant Steps community.

Our first bit of good luck happened not too long after Giant Steps was established. From a waiting list of more than 100, the school took on 3 new students, and we were one of them. Erica was five.

About 12 years later, we had some more good luck. When Erica was close to finishing school, we looked around to see what was available and were very concerned. The school came to the same conclusion as us, and Erica, along with a handful of other Giant Steps graduates were the pioneers of a post school program which opened in 2009.

Now in its 17th year and supporting 50 adults including Erica, I have no idea what we would have done if that option hadn’t appeared.

So, with all that good luck, what could possibly go wrong? Unfortunately, plenty, and throughout Erica’s teenage years into early adulthood we had a really tough time.

Erica is verbal, but only just. She has maybe 6 or 8 words. “Yes, no, Daddy, finish, no way, happy”. “Happy” is perhaps the best verbal interaction we have with her. On a good day she will put an arm around my shoulder, snuggle in and say “happy” in a satisfied tone. That is probably as close as we will ever get to her saying “love you”.

Erica can feed herself, maybe find something in the fridge or cupboard, but can’t prepare anything, even something basic, from scratch. She needs full assistance with dressing, bathing, cleaning teeth and taking medication. She has no road sense.

Erica doesn’t ‘get’ Christmas, or Easter, or birthdays. She is actually afraid of birthday candles. So those times of year, usually so full of joy for most families, aren’t big at our place.

When you are autistic, the world is often a confusing and even frightening place. How do you react when you are angry or confused? Or when you want to be left alone, but can’t tell anyone how you feel? Or frightened, sitting in a doctor’s waiting room. For Erica, her way to communicate displeasure was to hit, spit, pull hair, throw things, push over furniture, slam doors, break windows, or the TV. I always felt it must be terrible to be inside Erica’s frustrated head at such times, trying to get a message across, but unable to do so.

As a parent how do you deal with everyday life, how do you cope? You tend to avoid taking your child to the shops, or to social events. Or you tag team – one parent goes, one stays at home. One leaves early, one comes late. Simple things that other families take for granted like going to a restaurant on Mother’s Day, or even something as basic as McDonalds can become difficult or impossible.

It was easier to avoid these occasions. But unless you made a conscious effort, it was also easy to become isolated or even ostracised.

Over time, Giant Steps did a great job of helping Erica participate in lots of activities. Eventually, we could go to a coffee shop, or even a restaurant – if it was quick. These are important achievements, hard to measure but life changing.

As Erica moved into her teens, she began sleeping for long periods of time, up to 20 hours overnight, all weekend and day-after-day in the holidays. After years of testing by multiple specialists we finally got a diagnosis of bipolar disorder on top of her autism. The sleep was the predominant “down” phase of the bipolar.

As Erica got older, and had a surge in teenage hormones, she slept less but still had depression. But it changed, and presented as anger, aggression and agitation. She didn’t want to get up most mornings, her way of saying “go away, leave me alone” was very physical and we had enormous challenges every day when bathing and dressing her.

When College opened, every morning for the first 5 weeks we had a tremendous battle getting dressed, then hitting, spitting, pulling my hair and throwing things in the car as we drove towards Giant Steps. Then, when we arrived at College getting her out of the car and up the stairs was another battle. When I finally got her inside, she would hit and spit at staff, push furniture over, bang the TV, pull open the filing cabinets. Every day I was afraid they would say, “today is the final straw, take her away”. But no, the staff would welcome her and send me home. I would make a token offer to take her with me, then bolt as quickly as I could, before they had a chance to change their mind.

Erica did eventually settle, however, we had as many bad weeks as we had good ones over the next 2 years. But Giant Steps never gave up on us.

When Erica was 19 and we had endured months of relentless, daily challenges, we finally had to accept that we couldn’t manage her at home. We had to give up her care and put her into a group home. Was that our low point, did it get better from there? No, it got worse.

6 months after moving into the group home, something went wrong one night. Erica assaulted staff, and other residents. No-one knew what to do. Staff panicked and phoned the police, and 3 officers came. Erica started hitting one of them and they responded as they were trained to – they grabbed her, capsicum sprayed her in the face, wrestled her to the ground and handcuffed her face down on the concrete path. Then she was carted off to the psychiatric ward at Concord Hospital.

I was devastated. I felt I had failed our beautiful, fragile, confused, little baby girl, I should have been there to protect her. To save her from herself, but I had failed her. And if it was bad for us, imagine what it must have been like to be inside her head that evening. It took me months before I could talk about it without choking up and having my eyes fill with tears.

The only place we could turn to for help was Giant Steps. They rallied around us in unbelievable ways, rostered staff to be with her every day, even on the weekends.

Erica went into a deep depression. Wouldn’t eat, wouldn’t drink. We spoon fed her jelly and squirted water down her throat with a syringe and she hardly got out of bed for weeks.

For almost 18 months, Erica wasn’t well enough to attend College. But Giant Steps came to Erica.

What other organisation in Australia would do that for you? What other team of staff would have done what Giant Steps did for us? Any other place would have kicked us out years ago for being too hard.

We are very lucky to be part of Giant Steps.

Finally, slowly, Erica settled and her medication was fine-tuned. Life became better for us, but more importantly, it became better for Erica.

14 years on, Erica is living her best life yet – beautiful, smiling and happy. With the help of the NDIS and the combined efforts of 3 families, she is living in a purpose-built home with two other peers from Giant Steps. Erica attends College (now Adult Autism Services) and is constantly learning new skills, albeit it with slow, small steps.

Autism is for life. People like Erica who are profoundly autistic will need help for life. Giant Steps has been providing this help for our family for almost 30 years.

Ivana, my wife, and I, are still married. We haven’t killed each other… but are in fact coming up to our 36th wedding anniversary. The future for our whole family is looking much brighter and better than it has for years.

Ian Morris