Through The Eyes of a Parent

October 13, 2017

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My name is Sharyn and I’m married to Jason, and together we have 4 children, Eli 10, Josiah 7 and our twins Isaac and Isla aged 5.    We became involved with Interchange Outer East in January of this year.

My oldest son Eli has autism and definitely sits at the more extreme and unusual side of the spectrum with very splintered abilities.  Eli experiences extreme anxiety which can manifest in some very challenging behaviours.  He also has Obsessive Compulsive Disorder, causing him to fixate on things having to be said or done a certain way. Sometimes this can be humorous, sometimes it’s a bit annoying, and sometimes it’s really dangerous.   He is a climber, and thinks nothing of scaling a double or triple story building for the purpose of collecting balls/random objects from the roof. I think he also just really likes the view from up high, which is a hard thing to substitute for something else. He deliberately throws items up onto roofs and then becomes completely fixated on getting them down again. He will climb trees, climb fences, scale posts, take enormous leaps at dangerous heights all for the sole purpose of ball collection and being ‘up high’. The instillation of purpose built, 7ft ColourBond steel fences has unfortunately not stopped recurrent escapades onto our long suffering neighbours’ roofs.

So, when we attended our first family camp at Coonawarra campsite in March, and I looked up at the 20ft high roofline of the main camp building, I was quietly confident that Eli would be on that roof before the end of camp. Upon sharing my concerns with the camp leaders, I was reassured that it was probably pretty unlikely as there were no real access points, but if he did manage to climb up on the roof, this would be “nothing they hadn’t seen before”. The calm and relaxed, “it’ll be ‘right, don’t worry about it” attitude was music to our ears. As predicted, Eli was up on the roof the next day and the IOE staff along with the other families attending the camp, all responded in a calm and supportive manner which really helped de-escalate the situation and alleviate the pressure we as his parents were feeling. In trying to come up with a strategy to get him down, one staff member said, “Maybe he’ll respond if we explain the rules. Hey Eli, come down, you’re not allowed to be on the roof, it’s a Camp Rule!” Eli responded, by throwing a ball in her direction and running off. Another staff member who’d been working with Eli that morning, turned and said, “Nah, that’s not going to work with Eli, he’s completely uninterested in following the set rules, we’ll need to try a different approach”. “Oh rightio, came the cheerful reply, I just thought I’d give it a burl and see if it worked!   Let’s see if we can locate a ladder and talk him into coming down?” The three of us had a laugh at her failed attempt to get him down and another parent went to fetch a ladder.  The mood was calm, the atmosphere was relaxed, everyone’s concern was only for Eli’s well being. Jason and I were amazed by the understanding and accepting attitudes of the staff and other families, both in that situation and across the entire weekend, we were really blown away, having never experienced anything like it before. It’s challenging enough dealing with the stressful and dangerous situations Eli manages to get himself into without having to manage the stress and anxiety of everyone else watching on, which is usually the scenario we find ourselves in – this experience was a welcome change.

Last year was particularly challenging for Eli and our family, his behaviour really deteriorated and he became very difficult to manage. Last March he was actually admitted to the Austin Children’s Mental Health Unit for about 6 weeks as he had become quite violent and we were struggling to manage him at home.   Fortunately I was able to stay in hospital with him the whole time he was admitted. The Austin CMHU is a secure locked ward, a security tag is required to open all the doors to get in or out. There is an outdoor play area with double story fences. To give some perspective to his agility as well as his escaping and climbing prowess, during our stay there Eli managed to escape twice from the outdoor yard, resulting in a two automatic code black incident responses where the police and fire department were immediately called. First he climbed on a roof and it took 6 security guards to get him down, the second time he escaped to a nearby hospital park from where a team of about 20 medical professionals and emergency response personnel had to coax him back to the unit. I can actually laugh as I write this down now but at the time it wasn’t much fun for anyone. Eli’s hospitalisation took a huge emotional toll on all of our family, on my self-confidence as a mother and on Eli’s siblings who were passed around to friends and family for weeks on end while I was in hospital with Eli.

This year has really been a time of healing, when we have focused on re-establishing connections between Eli and all the members of our family, and Interchange has had a crucial role in helping us successfully do that. The family camps have provided us with the opportunity to meet and connect with other families in similar situations who have been able to really understand some of the challenges our family faces, and we have found these times so valuable. It’s also provided us with the opportunity to get away and reconnect as a family all together, something we probably wouldn’t have been otherwise financially able to do. My 3 younger children have been involved in the Siblings Programs throughout the year, which they have thoroughly enjoyed. As I write this, they are actually away on a weekend Siblings camp and my phone has been beeping all morning with photos of them looking as though they are having the time of their lives!

In the last school holidays Eli attended his first SAS (Small and Structured) camp by himself. Before the bus had even pulled out of the carpark (and yes the IOE ladder was safely packed in the trailer – and yes it was needed), I know that the staff had put hours of work into preparing for this camp and ensuring it was a safe and positive experience for the children attending. All the children had received laminated social stories in the weeks before camp to help them prepare for their time away. The effort that the team put in, and the preparedness to tailor and modify the program, often on the fly at the last minute, to meet the needs of the individual children who attended was wonderful. Eli had an absolutely fabulous time, explaining to us all when he got home that he wanted to have his Birthday Party back at camp. Jason and I appreciated having a couple of days to sleep in, which meant 7am wake-ups rather than 4am! I think the thing that probably meant the most to me about that camp experience was how genuinely kind and patient the staff and volunteers were with Eli and how much they really tried to understand the world through his lens and respond accordingly. They always saw the best in him, rather than focusing on the difficulties of managing his sometimes quite challenging behaviours.

As I write about our families experience this year with IOE, it is also my opportunity to say a heartfelt ‘Thank-You’ for the kindness, support and inclusion shown to our family. The beautiful and patient hearts of the staff and volunteers as well as the acceptance and understanding of other families on the family camps has been very precious. Thanks for the love, thanks for kindness, thanks for having me and my family as part of your village.

Sharyn (parent)

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