When Fear and Hope Collide: The Other Side of Autism

I wish that I could be one of those positive autism moms—one of those moms who are open and accepting of the hand that they have been dealt. I wish that I could tell all the parents of children who are newly diagnosed with autism that it’s going to be ok. But for me, my autism journey has been far from ok. In fact, what my journey has been is gut-wrenching, life altering, and just plain hard.

Regression

My journey began much like many others that I have read about. My son met all his milestones up until just about 18 months. He was inquisitive, mischievous, happy, precocious, and so, so beautiful. After 18 months, my son stopped waving. He started losing skills like kicking a ball, he lost interest in his toys, he avoided eye contact with me. I could be right beside him, shouting his name, and he would not look at me. He stopped babbling and lost his words. This is regression. For those parents who are wondering about signs that your child may be on the autism spectrum, regression is a major sign of autism.

Unlike most parents in Belize, I already knew what autism was. And so, when I saw my son regressing, I took him to three pediatricians in Belize who told me that my child was not autistic. Looking back, I remember feeling so relieved when I was told that he was ‘just’ developmentally delayed and that I should put him in school early so that he could be around other kids his age and start talking.
I put him in school. He did not start talking. In fact, he was so overstimulated that his autism symptoms increased. He started flapping his little arms and seemed to go deeper into his own world. When he was two years old, I took him to the Inspiration Centre in Belize. After one hour with the doctor, he informed us our son is autistic. The doctor recommended ABA Therapy (which at that time was not available in Belize) and Speech Therapy (which at that time was only available once a week for half an hour).

Desperation

This is where the desperation started. Imagine being told your child needs help – that he needs intense therapy to help with his development and that he needs it now. Urgently. But that the help that he needs is just not available in Belize.

After his diagnosis, what followed has been years of research, supplements, doctor visits, tests, catastrophically high-cost therapy visits, and a failed attempt at going to mainstream school. My son is now 5 years old and after all that we have tried, he is still non-verbal. As the years progress, his symptoms come and go. We have seen anxiety, sensory processing issues, insomnia, aggression, severe picky eating, obsessive stimming, and the worst to me has been self-injurious behavior (head banging/punching himself in the head/back/legs).

Fear and Hope for the Future

I have had such a hard time accepting that this is my reality. And I can’t help but asking, Why me? Why my son? Things that come so easily to other children – things like eating, sleeping, talking, going to school – are colossal challenges for my son. And the scariest part? The future. At night, when I’m alone with my thoughts and I allow myself to think about his future, I am overwhelmed with fear. I imagine him as a teenager, tall and beautiful and strong and unable to speak. I imagine him as man, still struggling to understand the world around him – unable to find a job, unable to find a wife. And I imagine him as an old man. This is when I cry because I realize that I will not be here with him……

Even with all that I have written here, would you believe that I am still hopeful? I look at my son and I see how hard he is trying. He is beautiful. He is amazing, and I wish that the world – the teachers, the government, the people in the restaurant who stare at us when he is having a tantrum, my family, my friends – could see him through my eyes. I wish that they could see him when he is laughing with joy as I tickle him; when he is swinging high up in the air; and when his little eyes are closing at night after hours of running around all day, … and he is at peace.