Sometimes I wonder what I would say to myself over 8 years ago when I was in the glow of my first pregnancy and dreaming about our daughter. My husband used to sing “You Are My Sunshine” to my belly and marvelled at every movement he could feel our daughter make. I spent my days planning the nursery, buying way too many tiny baby clothes and spending more time researching stroller options than I did my last car purchase. What would my current self say to that person now – after 8 years and 2 children with two diagnoses of Autism Spectrum Disorder (ASD)? Could I have prepared that woman for what was to come and the reality of raising two children with special needs?
I had a blissful maternity leave with my first born – we spent our days attending library storytime, mommy groups, music class and going on many stroller walks. Our daughter met all of her milestones at doctor’s appointments – albeit a little late, but still in the “normal” range. She rolled over around 4 months, sat up at 7 months, crawled at 10 months, and started walking at 17 months. She met all of her language milestones until age 2 when we noticed something a little off between her and her peers. She used to repeat a lot of lines from shows and books and would often repeat things that we said to her. We found out later this was called echolalia and our daughter used this gradually more and more as her primary way to communicate. I mentioned this to our family doctor who recommended we see a developmental pediatrician which we agreed to and waited 6 months for the appointment. We assumed that she had a speech delay, so while we were in the waiting room for the pediatrician, I looked at local Speech therapists and services in our area. We got into the room and the doctor asked us a bunch of questions about her development, and we went through a long checklist called the M-CHAT and once we had finished our doctor told us “Your daughter shows many of the signs of Autism Spectrum Disorder…” he went on but I remember feeling like all of the air in the room was gone and I stopped listening to what he was saying. We walked out of that room and our lives were forever changed. Autism is diagnosed in approximately 1 out of every 68 children – but we felt utterly alone.
Suddenly there were piles of paperwork to fill out and therapists to research and therapy centres to tour. There were meetings and resource consultants and waitlists for funding, and abbreviations that I had never heard of like ABA, IBI, SLP, OT, BCBA, AND DIR. We watched other parents take their children to ballet, soccer, and gymnastics while we had speech therapy, ABA therapy and occupational therapy appointments. We gradually saw our friends’ children grow and develop and learn new skills while our daughter fell further and further behind. I threw myself into Mama Bear mode and looked up new therapies, activities and ways to encourage speech or motor skills – always looking to see if there was something new we could do to help her. We celebrated every indication of progress – nothing was too small. She started therapy at age 3 and went from barely being able to sit still to being on task for 30 minutes at a time and gradually learned to communicate more effectively. There was so much progress and while she would always be different than her peers, we knew that autism was a part of her – the diagnosis didn’t change that she is the happiest kid with a smile that can light up a room.
There are of course hard parts too – meltdowns because she has trouble communicating, picky food preferences (beyond general childhood pickiness), self regulation and difficulties with social interactions. More than anything though – there is so much joy. I started focusing on creating moments of joy everyday – no matter how bad a day might have been. This might be filling up a kiddie pool and having a water fight with the sprayer, buying a backyard bubble machine, a surprise ice cream trip or picking our daughter up from school early for a fun park adventure. Creating at least one moment of joy everyday became something that I started to focus on and it helped us get through some trying times (and continues to do so). When you are in the trenches it can be difficult to see beyond a diagnosis
After a year and a half or so I started to feel strongly about having another baby – but there was more to talk about. Once you have a child on the spectrum, the chances of future children also being on the spectrum is approximately 20 percent. My husband and I began to talk through questions like: “Can we handle another child possibly being on the spectrum? What if our second child is more severely affected? If they are neurotypical, will they resent their sister? Is it fair to have a child end up being the caretaker of their sibling when we are gone?” The biggest question we had though was: “If they both have ASD, what will happen to them when we are gone?”
Eventually we decided to have another baby – but the happiness we felt was clouded by anxiety and worry. I had a picture perfect pregnancy and our son was born and completed our family. I had a very different experience while on parental leave with my son as I was making note of every milestone and was hyper aware of signs of ASD. To be honest, I think it made me miss some of the joy of his infancy – and it is time I can never get back. As our son grew up, all of his speech and motor milestones were delayed. Then – the pandemic hit and access to services stopped. Shortly after his second birthday we decided to move forward with an assessment to get a formal diagnosis, and while we were expecting a similar diagnosis to our daughter; actually getting it was still a major blow. I took a personal day the day after receiving the news and spent it crying on the couch, watching RuPaul’s Drag Race and letting myself feel my emotions. One of the things I learned from my therapist is to give myself time to feel my emotions rather than trying to move on quickly. I allowed myself two days then focused on filling out forms, getting on waitlists for funding and lining up therapies and appointments – at least this time I had a rough roadmap.
When you have children with special needs you go through waves of happiness and grief. Seeing your children gain new skills and progress is amazing and you want to hold on to those moments, but there will always be the grief of the experience that we thought we would have as parents. I can happily exist in our bubble until the day I interact with a neurotypical 7 year old girl or 2 year old boy and realize just how different our life is. There are however so many gifts that surprised me. Every day that our children wake up is the best day of their lives – it’s like getting a reset and we all take a deep breath and start our day. We continue to learn so much from them like focusing on the little things and finding joy in the everyday.
So, to that newly pregnant young woman 8 years ago what I would say is this: “It will be different than what you might have thought – but I promise you that there is so much love. No matter how hard things get, look into the faces of your children and find the joy.” To parents who are new on this journey I would be lying if I said there wouldn’t be dark days – but I promise you focusing on finding moments of joy everyday will fill your soul too.