Our Stories

Inside Our “Autism World”

“I see your true colours shining through. I see your true colours. That’s why I love you. So don’t be afraid to let them show. Your true colours are beautiful, like a rainbow.”

When I was pregnant with both of my children, as all moms do, I prayed for healthy, strong babies. But I remember I specifically prayed to God to not “burden” me with Autism. I don’t know why I was so worried about Autism at the time. I just remember thinking that would be more than I could handle. Which seems so silly now because clearly I know there are way worse diagnoses than Autism. But in that time and space, that was my fear. I reassured myself that I would not have a child with Autism because you aren’t given more than you can handle, so since I had already decided it was more than I could handle, we were good. I made a truce with God. We understood each other. I was heard.

Wrong.

Maybe it was a self-fulfilling prophecy of sorts. And as the great Garth Brooks sings, “Some of God’s greatest gifts are unanswered prayers.” It takes the air out of my lungs to think about it. Here we are, “handling” Autism.

Autism has not been a tragedy for us, but rather, a gift. It has opened our minds and our hearts to a world that we tried to ignore before. I am positive that Autism is not quite finished teaching us yet, as I know we still have lots to learn. It is my role to advocate for Gabriel, and also to share our experiences, my fears, my thoughts and our journey with anyone who will listen. I know that before I was introduced to Autism, I didn’t know much about it and what it brings to families who are dealt that hand. I want to get people talking. I want people to not be so scared, like I was. And above all, I want to inspire hope. I want people to watch our journey and say things like “See, it worked out just as we’d hoped.”

As I sit here trying to put pen to paper and find a starting point, I reflect on our journey so far, it is hard to place a timestamp on the beginning of the story. I could start with the first “signs”, but then I think back to pregnancy and some of my symptoms from that time – insomnia and restless legs. I don’t know what one has to do with the other, or if they could even be related. I suppose it doesn’t matter. What I can say at this point in our journey is there are a few things I am certain of:

  1. Vaccines do not cause Autism.
  2. Autism is a gift.
  3. My son is not broken.
  4. My son’s Autism has made me a better person.

I went into labour on my due date and Gabriel came into the world the following day. He wasn’t early and he wasn’t late – he was right on time, precisely when he was ready.

Gabriel rolled over at six months, he sat up at eight months, he crawled at 11 months and he walked at 15 months. In the same spirit of his entry to the world, Gabriel did things on his own time, not late, but right on time.

Gabriel was a great newborn and a great baby. He slept well, he ate well and never really cried or fussed – every parent’s dream. At three months old, Gabriel began rocking. He rocked in his bucket seat, he rocked in his bouncy chair and when he was sitting up on his own, he sat on the floor and rocked. Then, when he began to hold onto things, he would twirl them in his hands. We never really thought much of these behaviours at the time. We just thought he was self-soothing, as he would often rock himself to sleep.

When you meet Gabriel for the first time, he doesn’t “present” Autism in the typical ways. He isn’t super sensitive to things and he doesn’t flap or grunt, which are traits commonly attributed to Autism. He doesn’t have a “visible” disability. He is quiet and happy. Many have commented to me that “he doesn’t look like he has Autism” or “If I didn’t know he was Autistic, I would never guess.” It’s only when you really know him that you see the traits that put Gabriel on the Autism Spectrum. They say, “If you’ve met a kid with Autism Spectrum Disorder, you’ve only met one kid with Autism Spectrum Disorder.” This is very true, but for us, this is what Autism looks like:

  1. Speech and communication delay
  2. Does not engage in social activities with others
  3. Seeks movement activities
  4. Difficulty with regulation

In the past Gabriel also didn’t show affection, he had trouble regulating himself and transitioning to new activities or ideas, he would line up his toys rather than play with them in a typical, functional way. Today, I am pleased to report that Gabriel has come a long way in progressing on these goals. There is still a lot of work to be done, but Gabriel works hard every day to be able to balance his skills with those of his peers that are his age.”They” describe Autism as a spectrum, typically. I actually see it as more of a pendulum. Kids with ASD gain skills, then they revert and then they gain them again and surpass their peers in other areas.

There are moments in life that end up being monumental. Sometimes it is a sequence of events that changes everything. This is our story:

When Gabriel was 11 months old, my mother had a bad fall with Gabriel in her arms while getting out of a swimming pool. To prevent Gabriel from getting hurt, her instincts kicked in and she twisted her body in a way so he would land on top of her, safe from what could have been tragic. This resulted in my mother breaking her ankle in three places. She required surgery and 6 months of recovery. I was two weeks from returning to work from maternity leave and because my mother takes care of my kids while we are at work, I had no other childcare lined up. So, I took to Facebook and asked if anyone knew someone close by that had a home daycare. I only needed childcare for 5 weeks, until my husband would be off work for the winter. Someone recommended “Dorothy” to me. She was a local mom who provided home daycare and she lived just around the corner from me. I had never met her before so I basically cold-called her and chatted and told her our situation. Without hesitation, she agreed she would help us out for the 5 weeks.

Gabriel was just a year old and he seemed to like “Dotty”. After about 3 weeks, Dotty gently asked me if Gabriel had ever had his hearing checked and suggested I might look into having a hearing test done. Then, a week or so later, she mentioned her concern about some of Gabriel’s behaviours. Specifically, his lack of eye contact, that he didn’t respond to his name yet, his fixation with watching her ceiling fan, his constant rocking and twirling of objects in his hands and although it wasn’t considered late yet, he didn’t seem to have any words or even babbling. She was careful in how she chose her words, worried she would offend me. I asked her what she was trying to tell me and she said I might consider having him assessed for Autism. “Just speak to your doctor about it.” She urged.

I cried the whole way to work that day because deep inside I knew she was pointing out the things I had noticed but tried to avoid. I made the doctor’s appointment.

When we saw our family practitioner, he seemed unconcerned. He commented that Gabriel just seemed like a happy, busy one-year-old. However, he acknowledged my concern as his mother and said he would start the referral process for a pediatrician, as that wait-time is generally about 12 months. He went on to say that no diagnosis would be made until Gabriel was at least 18 months, anyway, but that we should be on the waitlist now rather than waiting until he was old enough for a diagnosis.

We waited about 8 months before we got an appointment with a Paediatrician. In the meantime, my doctor’s referral activated our local health agencies relating to early child development to start calling me. We met with Speech and Language Pathologists and Occupational Therapists from our local hospital prior to seeing our Paediatrician.

We met with the Paediatrician and she did a preliminary assessment in her office and then informed us she would require further formal testing (ADOS – Autistic Diagnostic Observation Schedule) to confirm a diagnosis and that appointment would be scheduled within a few weeks.

Leading up to this appointment, to cope with my anxiety, I reached out to friends on Facebook. I felt compelled to open up the dialogue with people I trusted to have a very real, raw conversation about what was before me:

“I’ve thought a lot about what I am about to post. At first, I thought it wasn’t appropriate for Facebook because maybe it’s a private matter. It occurred to me that I keep a network of people that are either people I’d consider friends or family, and the rest are people that for one reason or another, I value the opportunity for interaction that Facebook provides. The other reason I finally decided to post this, is because I’m not ashamed, but rather, the opposite.

 Yesterday, Gabriel was given a preliminary diagnosis of Autism by a pediatrician.

 We are going to be doing some further testing to confirm the diagnosis, but having said that, the pediatrician was pretty certain.

 I’ve told a few people this already and I’m taken back by the responses. They vary. Some just want to be supportive, others have confided they have experience with Autism and others are apologetic.

 Please don’t apologize. This is the little boy that I will be blessed to have call me “mom”, one day, when he is verbal. Gabriel is a quiet, gentle, yet adventurous little boy. He is almost always smiling and happy. He is my baby, and I love him to the depths of my heart, no matter what. There is nothing to be sorry for.

 I feel very positive that this will have a great outcome.

 My hope is that because I’ve posted this, it will encourage some of my friends to share with me. Other people’s journeys or stories can often help you to make your own decisions in a more educated way.

 Let’s talk. I’m listening.”

As scheduled, we completed the testing and then we were scheduled to meet with the Paediatrician again for results. I thought I was ready. I thought I was prepared for what she was about to tell me.

I wasn’t.

“Severe Autism”. That’s what she said. That’s what I heard. I expected “Autism”. I was ready for that. The word “severe” punched me in the gut.

Here is the softer version that I had to keep reminding myself of:

She said that if he was what they call “high functioning” it would be unlikely she could diagnose him at such a young age. But because he is “severe” it makes diagnosis obvious. She said she calls him “severe” today based on how normal functioning children his age perform. She said she doesn’t have a crystal ball and it’s hard to know where he will function a year from now but that “gap” might be smaller and not so “severe”. She can only assess what she sees before her today, and today, it’s severe. She said he most definitely will progress but we just don’t know what that looks like right now.

She went on to explain that in Ontario, there is funding available for treatments and therapies for Autism, but that there is a waitlist to receive that funding – approximately 2 years. Her recommendation was that if I was in a position to hire private services for Intensive Behavioural Intervention (IBI) that I should get started as soon as possible, but she cautioned that it comes with a price tag of about $60,000 per year.

I remember telling her I would find a way. I was going to find funding. I will never forget the look on her face. I imagine she was thinking “Awww, you are so cute. Good for you for trying, but there’s no funding out there.” I met her gaze with a “challenge accepted” attitude.

My heart broke a little. I was sad and disappointed. Looking back, I am not sure what I expected, exactly. All I know is that I felt defeated.

She told me to allow myself some time to grieve. I didn’t understand what that meant. I spent two days vomiting and crying in my bathroom.

Then? Then the sun came out. Then I pulled my socks up and sprung into action. My response to the diagnosis was to try to figure out a plan. How were we going to tackle this? I didn’t know the answers, but I knew by the fire in my gut that I was about to be a force to be reckoned with.

I started reading and making phone calls. I researched everything I could. I read stories. I read blogs of people living with Autism. I phoned health units. I phoned my employer benefits. I phoned my employee assistance program.

Then, I called a colleague and friend. I called for a shoulder to cry on and for someone to just listen to what I was dealing with. She reminded me that my sons are “Status Indians” and that there might be some support through their band or the federal health agency for First Nations members.

That was the golden ticket. I found a federal agency that funded medical services for First Nation children that were not otherwise funded, or there was a gap in service by other government agencies.

Gabriel started IBI therapy just one month after receiving his diagnosis. This is not typical for most families and is pretty much unheard of unless you are fortunate enough to be able to fund therapy on your own, which the majority of families are not financially able to do. Most families have to sit on a two-year waiting list for provincial funding. We are so fortunate.

Sometimes, I muse about the concept of “hope”. It is something I am very acquainted with, especially related to Gabriel and our journey on the path of Autism. When I see posts on social media from other parents of children with Autism, hope is a word that gets thrown around a lot.

I remember a time that someone texted me a video of a woman who was crying in her car as she explained to the world what her “little autism world” looks like. She spoke about “the last time”. She went on to explain that for most parents, “the last time” can relate to things like the last time you change a diaper, or the last time you co-sleep with your child or the last time you kiss a boo-boo. Those kinds of things. Things that are usually a happy time in parenting. Or bittersweet at the very least.

No matter how you feel about those things, they mark the end of an era and a sign that your baby is growing up and becoming their own independent person. She explained a scenario where she was in a position in a public place where she was “dealing” with her 60 lb dysregulated Autistic child and noticed the glares and comments from other parents. It was in that moment that she realized “this is not ok”. It was also in that moment that she experienced “the last time” for her. This was the last time that she thought it was going to be ok. The last time that she thought her boy would ever be independent one day.

And then comes fear. And sadness.

When I watched this video, my initial reaction was “Why would you send this to me? This isn’t my life. This isn’t where we are headed.” I was almost angry in that moment. That video has haunted me ever since. It has made me cry over and over again. What I said to the person who sent it to me was “This is not where we are in our journey. We are still in a place where there is tremendous hope. I hope that I never have to face this woman’s reality.”

On an average day, I hope for the little things that we, as parents, sometimes take for granted. Maybe I hope that today Gabriel will make a new sound. Or maybe say a word that I know he learned before. On days where I am feeling good, I hope that he might learn a new skill or a new word. On exceptional days, I think about the future – a future where Gabriel will be verbal and will function at a level that compares with his peers – maybe even beyond. Those exceptional days are days that I hope that he will excel academically and have a career, a family, a normal life. I don’t choose the career for him in my day dreams because I want him to choose something that he’s great at when that time comes.

Hope.

Hope and Autism are almost synonymous to me now. I find myself asking, “What does this look like when he is 12 or 16?” And that is the hardest part – the not knowing what his future looks like. So, I have learned to celebrate what is happening right now and keep an eye on the future, but not my focus.

Gabriel is now 3 years old and has been in therapy for over a year. He works with three wonderful therapists, who I often refer to as “Gabriel’s Angels”. Up until a few months ago, Gabriel was non-verbal. Today, Gabriel does 32 hours of IBI per week, including Speech Therapy and Occupational Therapy and he attends nursery school as part of his program to enhance his ability to participate in social activities with peers. Gabriel has a limited vocabulary, but he is starting to form words, which is a huge milestone and blessing for our family.

A year ago, I was thrust into a journey that I didn’t ask for, nor did I want. The last year has uncovered so many gifts – we’ve learned patience and kindness and acceptance in ways we never considered. Our eyes have been opened and we are better people because of it. We’ve learned that nothing is trivial and to celebrate small gains in big ways. By observing Gabriel in his quiet, happy world, I’ve learned that we create too much noise and there’s something so incredibly special about practicing tuning the noise out to just focus on what is important in this very moment. And lastly, we’ve met so many people that love someone with Autism and each story is touching, inspiring and unique.

I now know there is nothing to be “fixed”. My son is not broken. In fact, he is exactly the way he is supposed to be. He is funny and smart and brave and mischievous. He is sweet and oh so happy. He may take a little longer to understand a few things, but he will get there with time and a little help from a few angels we call Andrea, Kim and Jennifer and a whole other group of wonderful, selfless people that we’ve had the absolute pleasure to know.

I know now that my job and purpose is to advocate for Gabriel until he finds a voice of his own. We are blessed to be working with a team of experts to help us navigate this journey. Our next path will be in the Fall when Gabriel starts school and we will have to introduce new people into our world of Autism.

I think it’s important to take a look back sometimes to see where we were, but I don’t like to stay there too long because we keep moving forward. Everything happens for a reason. We know why mom fell. We would not be where we are today had that chain of events not happened.

I am grateful for the little inconveniences in life that take you to a place that you are meant to be.

Autism might not have been our chosen journey, but we sure do have the best tour guide.

Gabey, your true colours are beautiful like a rainbow!

**Our dear friend Dorothy passed away suddenly a few months ago, leaving behind two young boys that are both on the Autism Spectrum. As explained in this story, Dorothy (Dotty) was an integral part of our journey. This guest blog entry has been written with Dotty in my heart and mind, in her loving memory.

 

 

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1 Comment

  1. Cheryl, thank you for sharing your story. I hope to hear more about both of your journeys. You are one inspirational mom and an excellent writer.

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