There are many things that they do not tell you after an autism diagnosis. You have to go into the world and learn them on your own. And we learn something new nearly every single day. We experience a new symptom. We encounter another obstacle.
We have learned a lot about the complexity of the dynamic between our son with autism and our neuro-typical son. Their dynamic shifts often. And, I watch with baited breath. I try to exist somewhere between hopeful optimism and nervous caution.
Our sons are 22 months apart. We started noticing our first born son’s symptoms of autism at 17 months. At the time I was 4 months pregnant. I had no idea just how twisty the road in front of us would be. And maybe that is a blessing.
Maybe that is how I made it through my pregnancy and delivery. Maybe that is how I pushed forward through breastfeeding and working full-time. Maybe that is how we moved our family into new home. Maybe that is how we survived a year or assessments and diagnostics as under-slept parents of two kids two and under.
We received our oldest son’s autism diagnosis eight days before our youngest son’s first birthday. It should have been a time of joy and celebration. Instead we found ourselves panicked; overcome with questions and fears and an insatiable desire to know everything.
In that quest for information we learned so many scary things for our oldest son and the road ahead of him. And if that fear and worry was not enough we quickly learned something that could complicate this journey even more.
We learned that there was a 20% chance that our youngest son could have autism too.
The thought of doing it all over again was so painful. I looked at my sweet one year old and my eyes filled with tears at the thought of going back to the beginning. Reliving the early detection. The appointments and assessments. The referrals. The wait lists. The fear. I did not think I could be strong enough to do it again.
Yet we knew that we were still five months from the time when we started seeing symptoms with our oldest son. It was a waiting game. It seemed that waiting and worrying were two things we just could not escape.
As each day passed we were encouraged as our youngest son met and surpassed milestones. He acquired new speech and language skills with ease. By the time he turned eighteen months he was talking and regularly increasing his vocabulary.
But more so than skills and milestones; there was something else. Something we could not put a finger on. Call it intuition, but we just knew. We knew that he did not have autism.
It was a relief. A relief bigger than I can explain.
But in a way that people who do not live with a person on the autism spectrum cannot understand; the relief was short lived. Because even though he did not have an autism diagnosis; autism is a part of his life. Autism causes behaviors and meltdowns and heartbreak and fear for everyone in the house. There is one person in our house with an autism diagnosis, but the symptoms effect all of us every day.
As the boys get older dynamics seem to shift and change even more. Lately we struggle a lot with our youngest son as he navigates through the autism in our house.
He mimics the behaviors every single day. The wiggles, the behaviors, the meltdowns.
He sees his brother receive so much of our time and energy. He sees people come in and out of our house each week to spend 25 hours of “special time” with his brother. What he does not know is that this “special time” is hard work. He sees his brother leave the house for an “adventure”. What he does not know is that this “adventure” is to the clinic to check in with his ABA coordinator. He hears mom and dad going in and out of his brother’s room for “goodnight time”. What he does not know is that “goodnight time” is a desperate attempt to help his brother through a meltdown.
He sees all of these things and to him it feels like he is missing out. He sees his brother get “exciting” things. He thinks that his brother gets these things because of his behaviors and his symptoms. Because he is different. So, he tries to be different too.
But his different is not the same. He does not have a sensory processing disorder. He does not have impulses inside of him that make him “need” things in specific ways. His language skills are age appropriate. He is in control of his body. He does not wiggle from somewhere deep inside. He has social age-appropriate relationships with all of his peers.
It is hard to watch. It is frustrating. It is painful to see our neuro-typical son mimic the behaviors of his brother with autism.
It is hard and painful. Because that is what autism is. It creates vast and unpredictable spaces in our life. And then fills them in with things that are new and unfamiliar to us. And we all adjust. We keep adjusting. We live in a perpetual state of reset.
I have one son with autism. I have one neuro-typical son. And right now they are both displaying autism behaviors. That is the heartbreak that this journey brings every single day. I cannot explain because I do not understand it. But I live it. I live it every day.