I do not say I have an autistic child; I have a CHILD who is diagnosed with Autism.
Autism takes on many forms. Someone once said, “If you’ve met one person with Autism you’ve met ONE person with Autism.” I find this to be true whenever I meet someone who has been given a diagnosis on the Autism spectrum.
A spectrum disorder is a mental disorder that includes a range of linked conditions, sometimes also extending to include singular symptoms and traits. The different elements of a spectrum either have a similar appearance or are thought to be caused by the same underlying mechanism.
At 18-months-old my son seemed to have lost his hearing – all of a sudden there just seemed to be a change in his behavior. He would sit in a corner and I didn’t understand why. It seemed as if he didn’t understand anything I was saying, so, naturally, I thought he was suffering from hearing loss.
I took him to the audiologist to have his hearing tested. “Your son’s hearing is perfectly fine, ma’am. I’m not sure what you’re noticing in your son’s behavior that makes you think that he’s suffering from hearing loss.”
Ok, so his hearing was good, but the behaviour wasn’t changing. My second thought was that maybe he was having difficulty speaking and he needed speech therapy. So off we went to speech therapy. After over a year and a half of therapy with an amazing speech pathologist little progress had been made. The pathologist kept telling me “I think there’s something more than just speech delay going on here.” But I wasn’t ready to accept that fact that what was going with my beautiful, baby boy was anything more than just a speech impediment. The time had come when I could no longer ignore the signs and the professionals; Isaiah needed more help.
I finally decided to take that step, make that change, and have him assessed for a learning disability. I booked the necessary appointments. The professionals performed the various assessments and tests while I anxiously awaited the results. Surely whatever the diagnosis it would be a simple fix – a little more therapy, a little more effort. It would all be fine. And then the call came. To my shock and dismay, Isaiah was given the diagnosis of Pervasive Development Disorder or PDD, a severe form of autism, with the second diagnosis of a cognitive delay or, as the doctor labeled on the paper, “mental retardation”.
This shook me to the core. My mind was spinning. This couldn’t be happening. “What do you mean my child has a mental delay? A learning disability? Autism? What does this mean for our family? I don’t know how to work with a child with autism….. how am I going to be able to raise this child ? Is he ever going to speak?” So many questions filled my mind. Fear filled the hearts and minds of me and my family. We had never imagined this for our family. We were not prepared for the challenge of raising a child with Autism. We didn’t know anything about Autism.
After the diagnosis, I think I cried for a whole month straight – no-holds-barred, big gulping, soul-wrenching sobbing. It wasn’t pretty, and neither was I (it’s impossible to look good with red puffy eyes, tear-stained cheeks, snot streaming down your face – you know what I’m talking about, we’ve all been there). It took some time but after a while, I began to see that we weren’t alone. I realized that Canada, especially, is an amazing place to raise a child that has special needs and requires more assistance. Once I stopped crying and took a look around the community I realized we were surrounded by supportive people – friends, neighbours, family, doctors, nurses, specialists, teachers, not to mention the community programs that were available to us.
Coming from Minnesota I wasn’t sure what to expect from the medical community in Ontario, but I now know I had nothing to fear. The medical staff and specialists who treated Isaiah helped us understand that we were not alone – that we didn’t have to deal with the struggles, or manage the special conditions that Isaiah would require, on our own. They encouraged us to access the many resources and support services that are available for special needs children. They cheered us on as we learned to work with Isaiah – it’s so important to know how to work with your child. It takes a lot of work but it’s vital to your child’s success, and your family’s success, to utilize all the tools you can in order to create the best life for your son or daughter.
I found that support through Thames Valley Children’s Center. The TVCC became like a second family to me. These amazing people came to our home, almost every weekday, working with Isaiah and helping us teach Isaiah. As a team, we worked on developing Isaiah’s life skills – encouraging him to become a little more independent each day and worked how he would best be able to communicate with the people around him in his own way.
Isaiah is nonverbal and although he does not speak he is able to communicate with us using PECS (Picture Exchange Communication System). He is able to tell us what he wants and what he needs although we’ve come to realize he uses it as more of a menu to get the foods that he wants to eat (he is a teenage boy after all). It’s wonderful because it’s his own way of being able to express himself with less frustration. He’s now able to help us by guiding us on how best to help him.
I remember when he was 8- years-old and he didn’t know how to dress himself; he hardly knew how to use utensils properly. I don’t know who was more discouraged him or me, but with the help of our community and making the choice to utilize the available resources we have been able to teach him, little by little, how to become more independent. He has learned how to work on his own; how to put on his own clothing; how to feed himself and how to enjoy his day.
Grocery shopping is an important life skill. I’m so proud of Isaiah.
I wasn’t sure what to expect when we were given the diagnosis. Six years ago I couldn’t imagine what Isaiah would be like as a teenager but now, at 14-years-old, he’s made so many great strides. He can even make a sandwich on his own; mind you, he may be making it at 12 o’clock in the morning but we’re celebrating because he’s doing it for himself. He’s becoming very independent in ways I never dreamed possible. Some things he has been taught he caught onto very quickly while others took a bit more time.
Making cupcakes, fortunately not at midnight.
As a mother, you have your ideas and dreams of what your children are going to do; how they will develop and what they will grow up to be. When you’re handed a diagnosis for your child, any diagnosis, things change. Suddenly you are faced with a difficulty that wasn’t part of the dream. You see that there is a delay, or a situation, or a special challenge for your child it kind of takes those dreams and rearranges them.
Some people call them broken dreams but I think they’re just dreams that have to be rearranged. It may not be the exact route you were planning on taking, there may be a detour or two along the way, but you can get to where you need to go in order to be there for that person – if you decide to take the steps and learn together.
Sometimes when parents realize that their child is not going to develop in the way that they imagined they start to blame themselves. They start to wonder what they could have done differently – maybe she ate the wrong foods during the pregnancy; maybe he didn’t take enough time to bond with the baby in the few first months; maybe they should have nursed longer; maybe they shouldn’t have nursed at all….the thoughts can consume you. And then the disappointment sets in, and the worries bring stress and the cycle repeats itself.
I think the best thing we can do as parents is to just face what we have – my son is wonderful and he has Autism. It’s only after we’ve taken those steps, accessed those services, accepted that advice and learned how to survive, and thrive, in any situation that we’re able to see that what we once thought of as impossible is not only possible but conquerable.
As a parent with a special needs child, it’s important to learn to go with the flow. Learn to celebrate the small victories. Celebrate every victory. Life is designed for learning and growing and each person will learn and grow in their own unique way. My beautiful child with autism teaches me something new every day. One of the biggest lessons I’ve learned from Isaiah is that it doesn’t matter what people think; it doesn’t matter how they’re responding to us what matters is that Isaiah feels loved and understood.
It’s so vital to the human experience that each of us is able to communicate. Some of us have little difficulty with the traditional forms of communication – the written and spoken word. Not everyone has that luxury though and it’s paramount that everyone find their own way to express ourselves.
As I mentioned earlier Isaiah has learned to use PECS as a form of communicating but that isn’t his only way of expressing himself. Isaiah will show his emotions anywhere! It doesn’t matter who I’m trying to impress he holds nothing back. If he’s happy his joy is infectious – grins from ear-to-ear. But if he’s upset he’s going to let you know in no uncertain terms. He doesn’t try to figure out if you are going to be disappointed in him what matters to him is that he is able to express what he experiencing.
I think too many of us allow other people to decide how we should be expressing ourselves – to dictate what is “acceptable” to be said out loud. I think it’s important that each of us stop allowing other people to tell us how to express ourselves. I also believe that we all have to learn how to do that in our own way.
Isaiah has learned to express himself in his own unique way and, as an adult, I’m still learning how to express myself in my own unique way without worrying about what other people think. I think that is my own personal “developmental delay”. I worry far too much about what people think of me, but I’m still growing, still learning and one day I know I’ll figure it out.
My point in this blog is to share this thought: When we see people with special needs and special abilities we could all begin to realize that we all have challenges that we face in life. We all have things that we are working on and it’s not always easy. It’s not always the life that we dreamt of having. Sometimes life takes a detour. Sometimes we find out that we’re not going to be able to do the things in life that we thought we would do, but we can find another way. Make another plan. And we can find the support around us to be able to step in and help with that next plan, be it plan “B”, “C”, “D” or “Q”, and pursue it with all of our heart.
My beautiful child with autism is surrounded by equally beautiful people who help him achieve all he can. And in return, he brings joy to their lives. May we all learn to live with that same joy.
Live. Dream. Give. Live. Dream. Grow.
So many great people have helped shape Isaiah into who he is today. I can’t thank Kathy Barrett enough. As his teacher for many years, she always goes above and beyond to help him learn and grow. Special thanks to his caregivers, Sam Barrett, and Lyn Busink. And to my great friend, Justin Preston, who takes the time to spend with him singing and dancing and just being a great support.