Long-term success in autism ... How will you feed the joy?

Today on the blog we welcome a "guest blogger": Carole, mom of Kevin (whose art work has been featured in previous blog posts). Kevin is a young adult on the autism spectrum with limited verbal language who uses drawing for communication.

Kevin playing the drums

Those of you who have been following our blog for a while may remember reading a bit about Kevin's early days in a post called A glimpse back at where one boy's drawing for communication started - the post included links to video clips of young Kevin and older Kevin, giving an idea of how far he has come. I recommend that you take a look at those clips before you read what his mom has to say:

How Will You Feed the Joy? by Carole G

(originally published in the Fall 2013 Access Integration newsletter of CISS Ottawa)

I’m sure there is not a parent among us raising a child with special needs, who does not have forever imprinted on their minds and in their hearts, the day their child was diagnosed. For our little family, it was the virtual blow from a two by four to the gut; the breathless shock to the system; the blood rushing to your face and the feeling that you needed to sink to your knees as some faceless voice uttered “severely autistic”. It’s amazing what power a few little words, quietly spoken, can have on a whole bunch of lives. Then comes the ricochet effect as the power of love for your child sends you hurtling into action as if on a permanent adrenaline rush: therapy, preschool, social programs, interventions, doctors, what program, how many hours, what can we afford, who are the best service providers and how much can we fit into a day? All the while, like an irritating song stuck in your head, the words so many will utter without truly understanding the impact they will have; “there’s a window of opportunity, and then development slows or stops.”

Hindsight is a wonderful thing. It occurs once we’ve made our mistakes, and we’ve experienced the learning curve. So I thought I’d share a couple of the things I see so clearly now, as we progress on our journey with Kevin who is now a young man of 20.

Yes, therapy is tantamount to success! Thank heavens, no matter how we bemoan the waiting lists, the cost, and what we feel is a lack of service, there is so much more available today than when we entered the system. Information and support is now out there in abundance, a few keystrokes away to any home that owns a computer. But what is success? We took our little boy on a marathon journey of learning. We enrolled him in Thursday’s Child Nursery School. We took parenting courses in behaviour modification. We used Children at Risk, which at the time provided supervision of behavioural programming and I worked with my son, as did a couple of special needs workers. The little boy who screamed and whined constantly in frustration, tantrumed continually, hit and kicked and couldn’t bare to be touched, was stubborn and defiant and who lived in a world that completely separated him from us, made gradual and very slow changes. Then we decided to take him to a doctor who practiced fundamental medicine, to look at his eating and digestive issues and low weight. While we waited for our first appointment he sent us a questionnaire. The first question was, “what are you hoping to achieve?” Such a simple question, but for me it opened the flood gates that culminated in a philosophy for our home, our child and our family.

What I wanted was for my son to experience calm, to reduce his pain, to calm his overactive senses, to be able to exist in his own skin and to have a quality of life and experience joy. By extension I wanted this for every member of the family and I wanted Autism to be a part of our lives and not the driving force. Yes, I wanted to teach my son and continually raise the bar so that he moved towards his potential. Yes, I wanted to feed his mind, and treat him like any other child, with some added supports to accommodate the autistic characteristics, but what I really wanted was to feed his soul. I felt that any child with as many hurdles to jump just to make it through the day and who was being forced to live in a world that really suits us and not him, should absolutely be given a reason to love life.

So, I watched him like a hawk trying to discover what fueled his interest. It really wasn’t hard to figure out that music calmed him. As he rocked to the beat, his body seemed to ease and he beamed in absolute delight. I looked for something to engage Kevin and sought to find things that would also provide entertainment for Raymond, his older brother. It is rarely discussed, but when you add a disability to a family unit, your plan of action has to include every member, and take into consideration how they relate to each other. Raymond chose drumming. Kevin, who couldn’t abide certain noises, who had to be taught to touch his nose with the aid of a mirror, who didn’t cross the midline to pick up a pen with a preferred hand for an eternity and who was clumsy and uncoordinated was about to embark on drum lessons. I found a local music school (www.jeffsdrumacademy.com) and sat with the two of them for an hour a week. Fate, kismet, a guardian angel, call it whatever fits your beliefs but we were matched with a wonderful young man who was patient, fun, not only didn’t mind Kevin’s rote scripting of movies, but joined in. He willingly turned to me and asked for teaching suggestions. He accommodated the diagnosis, and expected Kevin to learn like any other student. The boys loved it.

Kevin has been playing drums for over a decade. He now has barely any noise sensitivities and he’s able to count out music at incredible speed. He is well coordinated while playing and continually improves. He reads music at a university level and most importantly he loves it. He looks forward to his lesson, is thrilled to see his teacher and has a face bathed in bliss as he plays along to the music, confident and proud. The brothers share a common enjoyment and this feeds their mutual love of music. One of the best gifts Kevin ever received was a website made by his brother. It contains all the music videos Kevin loves and the commercials that send him into fits of laughter. I’m sure Raymond thought he was just creating a gift that his brother would enjoy. I saw it as an example of a brother’s love. He took the time to create something that was perfectly suited for a differently abled sibling and one that fed into the interests they shared and a place they connected.

In a similar fashion, we have long used the services of the most incredible, out of the box thinking speech therapist. This wonderful lady forged an amazing bond with both Kevin and our family. She taught Kevin to draw and paired that skill with language (www.autismandtheartofcommunication.com).

Once Kevin began to draw he didn’t stop. When he picks up a pen, his face relaxes, he becomes spellbound and competent. His art is his love and is pervasive in his life, almost like a visual dictionary that he uses to order, understand, and relay his life. I am very grateful for a way to communicate with my son and him to me. When a situation arises that I need to explain or prepare him for, I pick up a pen and draw a comic strip. When I need to understand him, I will draw a picture and ask him to finish it. He shows me in pictures what any other child would describe in a conversation.

Kevin ticked all the boxes on the Autism diagnosis criteria save one, he didn’t spin objects. He was loved and challenging, big time. It has been a long, gradual journey. Kevin could not speak, tolerate sounds, touch, textures and taste.  He was distant and isolated, screamed and hit and lived in constant frustration. He was in pain often, slept rarely and appeared to be on the edge of a cliff always.

Today Kevin is barely verbal but communicates with us. He is calm, joyful, affectionate and can tolerate anything with a little preparation. He is smart, eager to learn, helpful, and does anything and goes anywhere you would expect of a young man his age. We taught him, fed his mind, helped find and develop his loves to create his joy.

What is success? It is ongoing and our journey continues. We still have a long way to go, but success hit me like that initial two by four at diagnosis, albeit with a much different effect, when our family attended Raymond’s university graduation. Success was never thinking for a minute that Kevin wouldn’t be there to share that joy. It was also watching Kevin, gently rocking with a smile pasted on his face as he listened to the quartet play as we waited for the service. He sat quietly through a long, hot service, getting up and cheering beside us as Raymond walked the stage. Raymond caught sight of us and sent a special wave specifically for the brother he is connected to. We were a family sharing a day of pride and meaning, where Autism was present but not the driving force.

So as you embark on a journey that will push you to your limits, my suggestion is, as you race to do all the things you can for your child, take a moment to relax and consider; how will you feed the joy?