Autism Bubble

“We live in our own bubble.” Words that my husband and I joke about almost daily. But I have come to learn that those words are more true than they are just a joke. Our life is not easy and some days…ok a lot of days, I question why God chose us to live this life. Why did you think we were the right ones to handle all of these melt downs, these fights with the schools to get Cam the right help he needs…he deserves, all of these doctors appointments, all of these stares by family, friends and strangers when Cam is acting “different”, these people judging us all while never knowing or understanding the life that we live every second of every day? Yes, we love Cam more than I could ever put into words…but that doesn’t mean I don’t sometimes wish our journey in life with him wasn’t so hard. I am jealous when I see others having wonderfully happy and successful play dates and never worrying if something is going to upset their child so much that they have an out of body experience where everyone just stands and stares and under their breath says “MY child would NEVER act like that. She MUST be an AWFUL mother.” Yes, you may think that I can’t hear those words or thoughts but I can. Sometimes you don’t even have to say anything because your looks say it all. I am jealous of the parents that can go out of town or shoot just go out for a night and have fun with other grown ups…without a real worry in the world. Yes, I am jealous that our bubble doesn’t allow for any of this.

This Summer I have learned though that sometimes…ok with our journey most of the time...our bubble is the safest and best place for all of us. We can’t expect others to ever truly understand this journey with Cam because they don’t live it. I have done a lot of soul searching this Summer and realized that though I would love to have close relationships with friends and more so with certain family members…it’s just not in the cards for me or for my family right now. We have to battle things every second of every day with or for Cam and those who don’t have these same or similar struggles can’t understand. I used to think that sharing all of Cam’s struggles and accomplishments would help. But, I think it helped me more to come to terms with this life than it did with helping anyone else understand this life we live. How can anyone understand that I usually only sleep 2-3 hours a night because I can’t shut my mind off because I am constantly worrying about what doctor or therapist I need to call, what is on the schedule for the next day that could possibly trigger a melt down, who do I need to call to get things taken care of at school for him, what did I say or do that triggered that one melt down, why is he hurting himself and how can I help him to stop? All of these questions and a million others go through my mind every second of every day. I tried not talking about Autism this Summer to just see if that helped people understand our bubble…but it only made it worse for us because then we were denying and feeling like we are ashamed of our life…ashamed of Cam.

I have also realized that Cam is happy being Cam. I say this because I always worry that he is missing out by not having all of these friends, play dates, etc. But the truth is…Cam is happy playing all day with his sister and doesn’t feel the need to have a lot of friends. He is happy in his bubble…our bubble. So why should I stress about trying to get others in our bubble? We have so much we deal with already, that stressing about friends or family being in our bubble really should not be a worry. I have realized that our Autism journey can be amazing if I allow it to be. Our bubble is small, but our bubble….our Autism bubble is perfect for us.