And so it is in the autism community these days. Often, I feel as though I'm standing in between two sides and - if I dare open my mouth - I'll meet the anger of one or the other.
On one side, I'm told I can never fully understand because I'm not one of them. My neurology is different, though if you've read my blog for a while you'll know that I don't exactly claim neurotypicality, either, but I am not one to self-diagnose or seek a diagnosis at this time. It's about my boy right now.
I support killers. I am ableist. And even though that's not what I think, it must be true because you say it. Your perception of me this way makes it true.
I cannot understand. My son and I will always have a barrier between us because I'm not like him. I will always be clouded by privilege and will never quite belong, and all of these thoughts you have about who I am scare me because I want nothing more to be welcome into my boy's community. And to hear that I might never be welcome and that my son might want to escape my grip, too? That scares me more.
Then, on the other side, I see those who cannot understand why I embrace my son for who he is so much. Why am I not doing more? I'm being neglectful by not trying GF/CF or other diets. I must not really care because I don't throw my family into bankruptcy chasing a "cure". I don't put my kid on vitamins, I don't stress him out, and I refused 40 hours a week of ABA (not that I could afford it, anyway). I give my kid every vaccine on schedule. So, I'm also a crappy parent.
I don't believe in cures. I don't think I'd accept one if I could. I don't believe that vaccines caused my son's autism. I believe he was born that way. I refuse to base his worth or my own on some notion of "recovery".
So, you see? I don't really fit in to either of the two extremes.
But you know what? I know that there are others occupying this space with me. There are other parents who want nothing but acceptance and understanding for their children while simultaneously getting the services their kids need. There are other parents who are excited for each victory, who see the beauty in the uniqueness of their children, but who still feel that it has to be okay to admit that this life is tough and - at times - not fair to our kids or our families. We deal with juggling the needs of one with the needs of the many. We struggle with helping them just be - in all their autistic glory - while also preparing them for a world that will not be as accommodating as we might wish. We struggle with that balance of asking the world to respect their uniqueness while also understanding that compromise and a meeting in the middle is essential to working with others. We want them to embrace being autistic while never using it as an excuse for treating others poorly.
We are there - stuck in the middle of two worlds and knowing that for our kids to be successful, some compromises will have to be struck. We know that the cannot exclude themselves from the world, but that they must learn to function within it. We do this while pushing just gently enough to help challenge them while also giving them space and time to achieve this comfort level at their pace.
We have to do all of this acknowledging that each of our families does it slightly differently. And what didn't work for your child - or you personally - may work for someone else. There is no one-size-fits-all for kids with autism. There is no one-size-fits-all for anyone. It is an incredibly individualized experience.
And at the same time, we have to handle the disapproval of both some our fellow parents and some adult autistics. We are misinterpreted, vilified, and made into martyrs - all roles which we'd rather not assume. We are made to fight with teachers, fight with therapists, and fight with insurance companies to get what our children need, but at the same time we are criticized for the fight.
And we are exhausted. We wake up every single day and do the whole lot of it all over again.
And you know why?
You see this little person standing next to me? He is the reason. He's the hope and love and motivation and reason that I get up and breathe every day. He's the reason I work so hard to bridge these chasms between us all, because I don't want him growing up thinking its an us vs. them situation. I want him growing up secure in the knowledge that the family that he loves and who loves him to the moon and back stands in solidary with him and his community. And to that end, I believe there can be a meeting in the middle. I believe we can all occupy the space between.
And you know, we don't have to agree on everything to do so. This isn't politics where we have to disagree just because we are on a different side. We don't have to deal in absolutes. Instead, we can put aside those differences to form a place where everyone - autistics, parents, everyone - is welcome. A safe space for all.
Maybe it is a pipe dream, but I see it as a reality. Until then, Jack and I will be in this space between the sides, choosing not to pick one and selecting the best parts to create our own way. It is my hope that others will see the value of working together and join us. If they don't, we'll still be here in the middle, forging our own path, hand-in-hand as always.