Isolation

Autism is often described as a "bright and colorful world." And we see that in Hudson most days.

But it can also be an island, all on its own with no map to show you how to safely navigate through the rocky terrain. There is no guide to redirect you when you get lost, have an accident, or feel disoriented. There are no signs to lead you back on the right path when you make a wrong turn.

For all its beauty, autism is also isolation.

Earlier this school year we were made aware of behavioral issues in PE. Hudson struggled regularly with not being as fast, as strong, or as coordinated as his peers when working through lessons in gym. He was frequently triggered by this and would often lash out at his classmates. We opted to pull him out of regular PE and put him into adaptive PE instead, where he works one-on-one with his PE teacher to get through lessons each week.

The behavioral issues haven't been limited to just PE, though. There have been triggers from other peer interactions in the bathroom, on the playground, during lunch, and in the classroom. He has also recently experienced his first bout with bullying.

The bathroom triggers were rectified by giving Hudson access to a private bathroom in the nurse's office. Just last week, we were informed that Hudson was going to eat lunches with either the nurse or with Kayla to try and avoid the loud chaos of normal lunch from triggering him. He has also started spending more time on his own at home, where he enjoys his alone time to play, read, draw, or watch videos.

Each of the measures taken seem logical on paper individually. But they all have one common denominator... isolation. He no longer eats lunch, participates in PE, or shares a bathroom with his peers. Every decision made to avoid a triggering situation leads to more isolation in his world.

We have unintentionally put Hudson on a path that distances him more and more from his peers, and from us. He seems to find at least some comfort in his isolation, but it breaks our hearts.

The choices we have made for him have not always been the right ones. We will be the first to admit that we don't know what we're doing or how to live in his world full-time. I remember back to last summer when we put him through a series of traumatic doctor's appointments and tests to see if he had a rare medical condition that could further hinder his ability to have a "normal" life. We followed the signs and the guidance of his doctors, and he ultimately ended up not having this condition (thankfully). Looking back, it's hard to say if we made the right decision or not. But the guilt remains for having put him through something that tortured him without his ability to understand why we were doing it.

As his parents, we feel isolated more and more with each issue that occurs. We want to help him grow and learn, but we don't know if each decision we make will be good, bad, or both for him. Friends and family will offer words of encouragement from a distance, but the reality is that they are often just as lost as we are when it comes to his autism. If you don't know what to say or do in a situation, isn't it often just easier to avoid it altogether, or to keep your distance?

In our search for answers and support we've often thought about starting a local support group for autism in our community. It feels strange to think about leading a group to educate, inform, and guide others on autism when we ourselves feel lost. How can we lead anyone if we don't have the slightest idea what we are doing or where we are going in this journey??

When things are going great, autism really is beautiful. But living a day with autism rarely is "great" from start to finish. The lows sting to no end and there's often no one there to help soothe the pain, or to tell us how to make any of it better. When a trigger is resolved for Hudson, he can go from having a two hour meltdown to being perfectly content while seemingly forgetting all about having been upset at all. We simply don't have the same ability to recover like he does, so our wounds cut deeper and take longer to heal.

For us right now, autism is isolation. And it's hard to feel this lost or alone.... it's hard to feel like we don't know how to make the right decisions to make his life better.