I struggle with our family belonging, within the Autism community. I look at K, and wonder how she can possibly have the same diagnosis as those profoundly affected? How can I look to those who struggle so desparately, and say we are on the same team?
I recently took K to an Autism friendly production of Annie. It was my favorite musical (and movie) as a child. I was so excited to share it with my girl, in a place where she could be herself, without judgement. If she bounced in her seat, needed a beak, couldn't keep quiet, it would be OK. A place where I didn't have to feel guilty, or like all eyes were on us.
Except, I did feel guilty. A large majority of the people there were those who live with severe Autism. I looked at my girl and felt like a fraud. I felt ridiculous for even purchasing tickets, and maybe taking seats from those who needed them more.
To be honest, there are times I struggle with even telling people K is on the spectrum. We have testing that proves it, from school and outside clinics. She faces very real obstacles on a daily basis, and there definite struggles in our lives. She isn't even able to be mainstreamed at this point. But, still, she speaks, she interacts. She is high-functioning by the standards set by most, and there are those who have spoken out against our place within the community. Who have told me as much. That is when the guilt sets in.
This guilt. This feeling that we don't belong, it makes me wary of sharing too much. There are a select few with whom I am completely honest, but for the most part my days are filled trying to find silver linings. Because, we are lucky. At least, that's what I'm told. That our struggles, no matter how I percieve them, will never compare to those of others. That my fears, worries, anxieties, they all pale in comparison. Because, there is always a comparison.
I didn't choose where my daughter fell on the spectrum. There was nothing magical that took her from being a non-verbal toddler, to the higher-functiong child she is today. It's just how things worked out. Does it make us any less part of this community?
That is the million dollar question.
Are we not allowed to share the difficult times because there will always be someone else who has it worse?
I want to say that yes, of course we are allowed. But, I don't know if I believe that myself.
And that can make life a very lonely place. Especially for my girl, because there are those who refuse her entrance on either side. Not typical enough, yet not Autistic enough.
I would love for there to be acceptance within the Autism community. For it not to be a series of one-ups, or who has it better (or worse). To be able to take K to an Autism friendly play, without feeling like we don't belong. That we are offensive in our presence, because there are those who struggle more.
And that maybe it's OK to not always look for that silver lining, because sometimes things just suck, and it's OK to feel that, even though, yes, there are those who will alwas have it worse.
We should all be allowed to live honestly, without judgement. Getting to that place is the challenge, at least for me. All I want is for my child to belong somewhere. She deserves that.