When planning a family, and imagining all of the potentials our children will have, it is easy to dismiss the thought of them being affected by a condition that limits them. My son was diagnosed with Autism by psychologists in 2012, at the age of two. His diagnosis led us into a world we felt we would never fully understand. It led to frustration, doubt, and sometimes triumph. It took time to accept his diagnosis, and learn how to work with it, but when I overcame the negative stigma of what having a special needs child meant, I was truly able to help my child grow.
Before my son was diagnosed we knew something was “off.” He didn’t play like the other kids, wouldn’t interact with other kids, and seemed much more sensitive than other kids to certain tastes, smells, and textures. We would watch his peers longing for the day when it would just click and he would fit in. It wasn’t that we were doubtful of his intelligence, and we didn’t exactly see anything “wrong” with him; mostly we just questioned our ability as parents, wondering constantly if we were doing something wrong that was causing him to behave differently than his peers.
He eventually fell so far behind in milestones that his pediatrician became involved. One by one we checked off a list of potential developmental delay symptoms, and so many of them applied to him, that we felt embarrassed at how we didn’t see the severity of the issue before. We quickly got him diagnosed by a team of specialists, and tried to help him with the use of Early Intervention.
Early Intervention is a program that focuses on speech therapy, occupational therapy, and developmental enrichment for children with delays. Although our son thrived in these lessons and quickly began adding to his list of skills, we still struggled with the stigma of his diagnosis.
It felt as though my husband and I were constantly being confronted with mass amounts of information. Everywhere we turned someone was offering advice, resources, and stories about someone they knew with a special need as well. While some people probably thought they were comforting us, their actions were a constant reminder about the abnormality of our lives.
We found ourselves becoming distant with one another. We were constantly being torn apart by family members who were convinced that Autism wasn’t a real diagnosis, or that our son, who was on a higher functioning end of the Autism spectrum, was being forced into a diagnosis by us.
The arguments that we constantly engaged in with family were exhausting. While many family members were receptive of the information, and offered help in getting our son services, there were also many members of our family who thought we were making a huge mistake by “labeling” our son. They were of the mindset that by calling him something like “Autistic” we were making him a target for his peers, and the “system.” My husband was easily able to let these comments go without a thought, but I was more receptive to the criticism. As a new mother, I desperately wanted someone to tell me I was doing something right. Between constant new information being thrown at me, running between speech therapy sessions, trying to learn as much about the special needs community as I could, and getting criticism around every corner, I found myself spending most nights curled up on the couch desperately thinking about how I could get away from it all. My husband began noticing that I was becoming depressed, and despite his encouraging words, and his persistence that no one else’s opinion mattered, I knew I was only at the beginning of a long road. The more I researched, the more I realized how life changing an Autism diagnosis could be. My mind cycled with thoughts like “will he make friends?”, “will he be able to live on his own one day?”, and “what will happen to him if something happens to me?”
I felt lost. I doubted everything I had done as a parent, and was scared to be a parent to any future children. I felt many opportunities begin to slip away for our family. I wondered if we would ever be able to go on a family vacation without the threat of meltdowns, if my son would struggle so badly in school that he would not thrive, and I worried what the stress would do to my marriage.
The doubt and anxiety carried on for years. Although my son was very academically intelligent, he lacked the necessary social skills that would help him fit in with his peers. But one day, as I was watching him master a particularly difficult puzzle something occurred to me.
Maybe it didn’t matter what my son couldn’t do, because there was so much that he could do. Although it was more difficult for him to make friends, he had the ability to warm the hearts of the people around him. Although his speech was behind, he had mastered many academic skills that his peers were nowhere near accomplishing. He learned to memorize things quickly, he enjoyed learning, and especially enjoyed school. Slowly, his diagnosis became just a name to me, and not a limitation. There was so much more to learn about him, and areas we could help him grow in, that his Autism couldn’t touch. The more I began to focus on what he was capable of, the less I worried about the things he struggled with. The less I worried, the more I realized that having all of the information in the world about Autism was not important, what was important was knowing when to reach out to someone.
I began relying less on everyone else’s opinions about my son’s diagnosis, and only began to care about what he felt about himself. I saw the pride in his eyes when he would finally master something new, and I knew that Autism would only limit our son as much as we allowed it to. When my confidence grew, my self-esteem improved, my marriage improved, and most importantly my son flourished.
What I learned from being a parent of a child with special needs is that despite all of the specialists, information, and opinions of the world, the only person who knew our child was us, the parents. By focusing on what he can do, and helping them achieve his goals, we can create a life that is much more enriching than one that is limited due to the stigma of his “special needs.”