Isolation

Our family has the privilege of knowing two couples that are wonderful friends. We have known them forever, it seems.  They have known Rex since the beginning and they were here for the birth of our other two little dudes. Life has given them new opportunities and changes and now they are both several hours from us, in opposite directions.  When we were all in the same town, we shared everything together. They watched our kids, we have dinners and lunches and breakfasts together. They shared our dreams for the boys and our laughter and tears at watching little babies grow to be little men.

We have our own set of memories that we share, just with them. Rex, when he was two, watching Monsters Inc . with his eyes peaking through his hands saying, “Scary. Scary” and then giggling over and over again.  Coming home to Rex learning to do shots of orange juice on the kitchen floor and subsequently swallowing a penny. Taking them for ice cream and playing catch. Celebrating birthdays with cake and way too many presents.

These four people knew us before we had kids and they watched us grow from a young, naive couple of two into an older and maybe wiser family of five. Out of the six of us, we were the only ones with kids and they weren’t in a hurry to add any to the mix.  They knew Rex when he was a bright-eyed boy who laughed and giggled and loved to play outside. They knew Rex when he was a food adventurist and wanted to try anything and everything, including wasabi. They knew Rex when a trip to the store was just another fun outing.  They knew Rex when he knew how to tie his shoes. They knew Rex when he knew how to play with others. They knew Rex when he could carry on a back and forth conversation without struggle. They knew Rex when he could look you in the eye without turning away. They knew Rex before Autism changed him.

By the time Autism had begun to intertwine itself into Rex, our four friends had moved away.  They knew there were some struggles, but we kept the stories pretty low key.  They knew we were getting evaluations done for Autism, but they didn’t really understand why. We downplayed a lot of the behaviors and Rex worked really hard to keep them in and not let them show on the occasions where we did see them. He hates for people to see him lose control.

Somewhere in the midst of all this, I began to isolate myself. I shut my closest friends out of this part of my life. I didn’t want them to change their view of Rex. I wanted them to remember him the way he used to be, before he regressed. Before Autism took him away. I know they are there for me and would not turn me away if I called for a shoulder to lean on. But these are not words I want to share with them. I don’t want to tell them the horrors that sometimes take over our day. I don’t want to tell them about the kicking, punching, biting, spitting, slapping and screaming that happen when he rages. I don’t want to talk about how he can’t hug me like he used to anymore. I don’t want to tell them that he’s now terrified of heights and he can’t look at you for very long when he talks. And most of all, I don’t want to tell you that I know he’s still in there somewhere. That two year old little boy who could light up a room. The little man who was the life of the party. Every so often, he will look at me, really look at me, and I see the sparkle. I see the light that Autism took away. 

The change was so gradual. It wasn’t the night and day regression that you hear about with some kids. We thought it was a phase. We blamed a need to adjust after our third son was born. We lived in a life of denial for almost 2 years.  It wasn’t until a year and a half ago, that we knew there was so much more going on than just a phase.  The behaviors escalated. And the changes became more noticeable. 6 months ago, we finally got the official diagnosis of Autism.

My husband and I have gone through the stages of grief in accepting and learning to live this new life. Shock. Sadness, Anger. Denial. Loneliness. Acceptance.  We fluctuate through these emotions, sometimes daily. We miss the Rex that our friends knew. We hate to see our main man hurt so much. We get up every morning and face the same battle that we went to bed with the night before. And we have finally started to breathe the words, this is our new life.

But we haven’t been able to call our friends and tell them. We haven’t been able to ask for their help, for their support. We haven’t been able to put those emotions into words. We haven’t been able to go see them because the change in routine is too stressful on everyone.

Our wonderful friends have started looking at the idea of expanding their couple status to that of a family.  They are talking about having children of their own now.  I am genuinely happy for them, but I can’t help think of their relationship with Rex.  They shared dreams for him when he was little.  The same dreams that they are starting to create with the desire for their own family. I worry that Rex is a constant reminder of how quickly those dreams can be taken away.  This was not supposed to happen to our Rex.

Being here with him every day, I still find it hard to fully understand this different child I have now.  How can I expect them to understand him? Looking back, my path of isolation may not have been the best choice. I didn’t even realize I was making that choice. I was just trying to survive.

Rex is now 8 years old.  He will finish 2^nd grade this year here at home in our homeschool classroom. He has been diagnosed with High Functioning Autism, ADHD, Sensory Processing Disorder, Generalized Mood Disorder and possible Bipolar Disorder, and Dyslexia.  Now that he is older, the differences are much more noticeable as his younger brothers surpass him on multiple levels.  But Rex is a fighter. He was determined to learn to ride a bike with no training wheels. He may have been the last of the boys to do it, but he had a much higher mountain to climb.  The fear of getting on his bike was paralyzing. But he did it! Watching him ride down the street still brings up the emotion of the first time I saw him ride. Rex can tie his shoes now and button his shirts! These are huge feeling of accomplishment for him. All of these skills he lost as he regressed into Autism. But he was determined to get them back.

He loves to do arts and crafts and has mastered cutting with scissors. He loves to watch shows like Myth Busters and is crazy about Food Network.  He loves to learn the “how” and the “why” of the world. He brings a unique perspective to the world and makes me look at things in a different way. He loves to listen to me read to him.

We curl up before bed and I read to him. He lays there quietly taking in every word I say.  Every so often a steal a glance at his face, and in those moments, if I look just right, I can still see that sparkle in his eye.