2021 was my toughest year. I say that with no pinch of salt; it was emotionally, financially and physically draining. Exactly a year ago (April 2021) my son was diagnosed with autism.
See, as much as my family had started noticing a few signs that there was a likelihood that our baby would be on the spectrum, it was not final. In our minds we were hopeful that he just had delays in his developmental milestones and that he would reach them all. However, as days turned into months, and months into years, without so much progress especially in his speech, we finally decided to seek professional help.
When we received the comprehensive assessment report, my heart just broke. I did not feel prepared for the task ahead. Being a mental health advocate, I have always known the intricacies of autism. And until then, I had not pictured it being so close to home, hell, I did not even picture myself being a caregiver to a child with special needs. I have never thought myself to have that kind of resilience anyway. So, when we got that report, I was dumbfounded and wondered what the journey ahead looked like for him and for all of us.
As my son was already 4 years old at the time, we had to act fast and seek interventions that would help him; to be able to develop his speech, and to overcome his meltdowns, which were now also frustrating us as we did not know how best to support him. We figured we had to get him out of the mainstream school he was attending and enroll him in therapy.
We got a recommendation of a great institution that offers therapy near home, which would be ideal since we would not have to travel far to get him there. We visited the institution for another assessment and for placement. Repeating the answers to the questions different therapists ask over and over is a very draining experience. The therapists gave the same report that our son had autism, and we immediately enrolled him for therapy. He has been doing occupational therapy, applied behavior analysis and speech therapy for the past year.
On some days, we see improvements and we are really happy with his progress. But on other days, we have serious challenges and we become discouraged. There are days when he is calm, and there are days when he has serious meltdowns and hurts himself. This can be draining. When I was at my lowest point last year,I came across an essay by Emily Perl Kingsley written in 1987; this essay saved my life and gave me the courage and strength to face the role of a parent with a child with autism that I am in. I will share the essay here for anyone who finds themselves in a place they did not imagine they would ever be, a destination they did not buy a ticket for:
“I am often asked to describe the experience of raising a child with disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel like. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
I have learnt to love my Holland. To accept the fact that my baby will be turning 6 in july and would now be in grade 1, but we have other milestones to reach. We have language to develop. We have motor skills to learn. And he is the most loving boy in the whole wide world.
Instead of sticking to the Italy handbook I had mastered, I am slowly learning a new handbook on Holland. This includes surrounding myself with a tribe of moms who are raising children in the spectrum, learning more about autism and how best to support our son to reach his milestones and to live a near-normal life as possible. Most importantly, to surround our prince and ourselves with energy that only feels like sunshine. Come to us with negative energy? We don’t do that here :-)
If you find yourself in Holland, a destination you didn’t sign up for, it is okay to grieve. But you should not stay there, collect yourself, dust your clothes and move. Enjoy the new scenery and adapt to how the people in Holland live. Perspective is everything!! You might realize that there is actual gold in the destination you have now found yourself in.