FACES FOR AUTISM
On August 21, 2012, our beautiful boy Dominic was born. He showed some remarkable talents when he was a newborn. His legs never stopped moving except when he was asleep. We continuously commented on what an incredible runner he was going to be. His temperament was gentle, he generally only cried when he was hungry, and he played with toys that jingled for lengthy periods of time.
I had the resource for child development within reach that gave a general timeframe for important milestones and I started to be concerned. I took him to my GP but since Dominic was meeting his height and weight goals and some of the typical milestones, my doctor dismissed my concerns. But a mother’s intuition is usually right – Dominic’s body seemed to be extremely flexible, which made it challenging for him to get his balance and to learn to crawl and subsequently to walk.
I insisted on his seeing a pediatrician who could assess him. The pediatrician diagnosed him with “low tone” and was convinced he had no further developmental issues. I pressed for genetic testing and was met with resistance. Fortunately I persisted. The test revealed that Dominic had two minor-chromosome deletions – he would be the first child diagnosed with this combination of deletions – it was anticipated that these deletions would affect his cognition and his heart but to what extent was still a mystery.
Dominic started physiotherapy and learned to crawl and many months later he learned to walk. On his second birthday, we celebrated his birth and his new-found zest for life – he could walk and we were ecstatic!
Learning to control his limbs to be able to walk was a challenge that Dominic was happy to work on. Another talent of Dominic’s was his acute hearing – it’s remarkable – he could literally hear a pin drop. He also seemed to be extremely curious - he would move from one toy to another and be in constant motion. And he was so quiet!
Again, it is love and care that you give your child that provides you with information that the specialists do not have. His preference for jingling toys close to his ears for long periods, his quietness, and his ability to be constantly moving from one object to another indicated that perhaps other factors were at play.
His new pediatrician was finally convinced to send Dominic for autism testing based on the keen observations of his physiotherapist; she had spent the most time with Dominic – much more than his pediatrician, the specialists at Children’s Hospital, and his GP. Her documentation of the characteristics of autism and what she observed in Dominic were key to his getting assessed. On the day of the tests, two specialists observed him for a significant period of time and their diagnosis was quick and definitive: our darling boy is a child with autism.
As in many things in life, life takes you on a journey you never expected to take. We have learned to be his advocates, to ask questions, to research, to get connected to the best specialists, doctors, and teachers who can assist him. We have learned a great deal from Dominic and as life continues, we will learn a great deal more.
We choose to focus on the positives – he’s happy, he’s healthy, he’s loving, he’s beautiful, and he loves music. He’s saying more words and if you listen really closely, sometimes you can decipher a sentence. He loves being around other children, going to school, and playing alphabet and number games on his iPad, but the highlight of his week is definitely his swimming therapy classes.
His smile and beautiful eyes shine a light on and in all of us. He is our darling boy whom we love and adore.
“Again, it is love and care that you give your child that provides you with information that the specialists do not have.”
February 6th 2012, we were blessed with the birth of our son Rylan, he was perfect to us. Always smiling and full of life.
At 6 months old, Rylan was not meeting his growth milestones, he was barely sitting up, could not hold his bottle and was delayed. We started down a path to see if there was something physically wrong with him, we went to the children’s hospital to have his hips x-rayed, they ran all sorts of tests and nothing. He was normal.
At a year old, he started having seizures, sometimes 2 or 3 a day. My husband and I never thought that this day would mark the start of a new journey we never planned on, which has brought many tears, frustrations, fear and so much joy. Rylan was diagnosed with epilepsy at the age of one, this was a hard pill to swallow. How could my perfect child suffer from such an agonizing disorder?
At the age of 2 we participated in a genetic study to find out genetically the cause of his epilepsy and development delay. There was a 25% chance the geneticists would find the deletion in his DNA, we were lucky they did. However, I felt that although we had a diagnosis for his epilepsy this did not resolve any of the daily issues we faced. He was still having seizures, he was not walking, talking or developing at the same pace as a normal child. As a mother all you want to do is ‘fix’ your child.
One doctor told us, “if you want to help your child, give them as many interventions as you possibly can”. This completely resonated with me, it compelled me to educate myself on other disorders that he could have, that could guide us through our journey or offer us some support.
Although Rylan, is generally a happy and social little boy, he suffers from many repetitive behaviors. He is also unable to articulate and communicate his thoughts, and wishes. I had read a bunch information about Autism and saw so many similarities between his behaviors and mannerisms, which triggered me to push our paediatrician to get him tested.
At 4 years old, Rylan was diagnosed with Autism on top of all his other medical conditions. Daily life is not easy, but it’s our life. I feel blessed that I have a son who has taught us so many lessons in life I never anticipated. We celebrate, we are adaptive, we tell each other we love each other every day. We embrace all the idiosyncrasies, we are kind. Rylan is perfect to us.
Keegan, Caydence & Brandi Hembruff
Keegan is a vibrant, loud and enthusiastic comedian. He is silly, sarcastic and extremely intelligent. He has a memory like no other and is compassionate and loving.
Keegan hates to wait. He believes his body is allergic to it. He can’t manage the concept of losing and has a temper so passionate that his body will physically vibrate when he is elevated.
Having your first child is a process for any parent. You abruptly go from me to we. How is it that someone you have never met can become the soul focus of your entire world? Both Keegan’s Dad and I were excited but terrified. And then there he was in all his glory, cranky and cute.
As Keegan grew, we saw lags in his development. Slowly we were referred to community agency supports to better understand why he was not meeting developmental goals. The gaps in his development became greater, he dragged instead of crawled, had trouble with gross motor skills and was constantly overstimulated by everything.
We put him in every social group, said yes to every birthday party, and created countless play date opportunities. Social skills were hard for him and we often left abruptly in a screaming fury of tantrums, with Keegan in a football hold to the car.
Preschool was an eye opener. The teachers were very quick to ask that Keegan be put forward for support in the classroom and it was almost as if our fears were confirmed. Our kid was different and we had no idea what that meant.
Shortly after that, we were asked to have him professionally assessed. Like many parents, we sat in an office with doctors who looked at our child for the first time making judgements and measuring behaviors. The diagnosis was PDD-NOS, Autism Spectrum Disorder.
Hmmm…. now what? What does this mean? How can I make it better? Fix it.
Support came in waves after that. But it was the process that was important. The diagnosis was like a trauma for me. Trauma from the idea that I would not have the son that could do all the things I hoped and wished. But that was the mistake. As I moved through the stages of grief around Keegan not being what I wanted him to be, I learned that he was so much more.
I became part of his journey. He started to teach me how to see the world differently, how to be humble and seek to understand behaviors. Then we started to see progress in his therapies too. Don’t get me wrong, the intensity of the work involved for us as a family was high, but we did it together.
I always thank Keegan for teaching me how to be a mom, the kind of mom I was meant to be. He tells me often that his sister is lucky he taught me so well.
In our home we do smiles. We do 30 second dance parties with air guitar and peach wave frozen yogurt karaoke on Fridays. We read Geronimo Stilton before bed, have movie nights and epic tickle wars. We have disagreements and apologies, we yell and we laugh. We love each other and say it often. Best of all, we celebrate Autism, because to our family, it is a super-power!