I Will Never “Accept” Autism

get out of jail

When you have a child who is diagnosed as having an Autism spectrum disorder (or in the new DSM-V – Autistic Disorder), there seems to be this notion that you have two choices – to accept the Autism… or not.  It’s even a thing, “Autism Acceptance”.

There is this idea that Autism is an untreatable disorder that just happens to people.  Most claim that we don’t know ‘why’ this is happening to 1 in 66 children.  It just is.  We must accept it.

If only it were that simple.

I refuse to accept this epidemic that is causing millions of children to live in physical and emotional pain for their entire lives.  When you add to that the ripple effect of this disorder on caregivers, communities, schools, and healthcare providers – which sometimes leads parents to kill or abuse their children with Autism – how can we dream of simply accepting the weight of this burden?

I understand the goal of “Autism Acceptance”.  We all want, and have a right, to be accepted and celebrated regardless of our differences – the things that make us uniquely who we are.  Working and relating with people on the spectrum – 1 in 66 humans in the US at this point, though I actually believe the numbers to be higher – takes special skills, an open heart and a willingness to put aside our own ideas about what people ‘should’ be like.  We have to accept that humans on the spectrum, and all other humans, are allowed to be who they are and accepted for who they are, completely. I will always accept people who have Autism, but I can not simply accept the fate of Autism itself.

You see, my son is not Autism and he is not Aspergers.  He is a human.  He carries a diagnosis of Aspergers Disorder.  And I accept him.

But when he was 3 years old and experiencing full blown emotional breakdown because I put his food in the wrong colored bowl – no, I could not accept that this was going to be his reality, our reality, forever.

He was in pain; it was physically and emotionally painful for him to switch from wearing long sleeves to short sleeves in the summer.  When his emotions went off the rails because of a change, and we could rarely predict which one or when it would happen, his emotional distress was completely genuine.  He wasn’t being a brat, he didn’t need a ‘good spanking’ and we weren’t doing anything wrong as his parents.  His brain just could not compute the input and off the rails we would go.  It was a ride we would go on several times a day, 10, 20, 30, 40 minutes at a time, never really knowing when it would end. When your child is screaming, 2 minutes is a long time, but 40 minutes is an eternity.

If your child was sick, say with cancer, would you just accept they were in pain, that the cancer was destroying them? No, you would treat them in whatever ways you knew how.  You would do everything in your power to eliminate their pain and improve their quality of life.  You would accept the diagnosis, but you wouldn’t be complacent to it. You would fight.

So that’s what I did.

Doctors didn’t have any answers, just a diagnosis.  While it was validating as a parent to know it wasn’t some fatal parenting flaw that caused him to behave and react how he did, it didn’t change anything in our day to day lives.  My insurance wouldn’t even pay for more than 2 sessions of OT for sensory integration therapy.  I was completely on my own to navigate this.  I had to treat my son’s pain and discomfort.  I had to do something.

At the resistance of my then partner, his other mom, I implemented diet changes.  I added in supplements.  Some of it did nothing, some of it changed the course of his life forever.

I don’t believe anything we did to help treat his Autism changed who he is at his core.  He is still bright and affable with a huge heart.  All we did was turn down the noise and static that was preventing him from living fully – we helped remove the big barriers that were keeping him from being who he truly is.

From the moment he entered first grade he has never needed much extra support in school – at least no more than your average kid.  He has negotiated friendships and his learning environments beautifully with a few, typical, speed bumps.  Today, he is a quirky teenage boy who loves playing Monopoly with his friends.  Yes, he gets disappointed when he loses, but he doesn’t flip tables or break down when this happens.  He handles it as well as any other kid would.  If I had accepted his diagnosis of Autism and done nothing, we would not be here.

When we were in the trenches, there were times when I clutched the edge of a horrible day with white knuckles, fearing that tumult would be the climate of our lives forever. It was those times when I didn’t dare let myself dream that his life would turn out the way it has.  It was those times that forced me to sweep together all the little bits of hope I allowed myself and do something, anything, to help treat this ‘untreatable’ disorder.

I asked him the other day, now 13 years old, if he wanted to be re-evaluated.  I told him he would very likely lose the diagnosis.  He said he didn’t care.  He doesn’t believe it will affect his life either way.  He accepts who he is, and I accept who he is.  All the neurotypical parts. All the Aspergers parts.  All of him.  I accept my son, but I will never sit silently and accept that fate that Autism has to offer.

I will always support parents who choose to seek recovery and remediation because I know they don’t want to change who their children are, they want to allow their children to live fully, just like the rest of us.  And that’s not too much for any parent to ask.

~~~

photo credit via photopin cc

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remodeling

Camp Invention

I started this blog as a way of finding my footing on some pretty shaky ground and getting back to feeling at peace with who I am (and in many ways rediscovering who that is). One of my goals is that feeling more peaceful and centered will allow me to be the parent I want to be.

The Man and I had a conversation the other night. Sundays always seem to be tricky at our house. Either the big kids are wrapping up their week, or the Man and I are wrapping up our ‘alone’ week and getting ready to transition the big kids back in. With the Eldest this is usually remarkably seamless, with the Youngest of the Eldest, not so much. But that’s a post (and a few therapy sessions) for another day.

Our conversation circled around to a place where I clarified my current perspective on parenting for him. Or more accurately, what I can and can’t do and still remain sane.

When the Eldest was a tot, and yet to be diagnosed with Aspergers, things were remarkably tricky. See, I used to teach preschool. If anyone can wrangle a group of 3 – 5 year olds and engage them in some age appropriate tomfoolery, I’m your gal. Or so I thought I was. But the Eldest being who he was, who he is, has regularly and from the moment of his birth challenged every preconceived notion I’ve had about just about anything. Someone I know said that when you become a parent it recarpets your brain. I think when you become a parent of a child on the spectrum, there is an entire demolition that takes place in your brain and the rebuilding process can take months, that’s if you can even get the contractors to show up.

To say I felt like a failure on a daily basis is an understatement. Often it was hourly. Sometimes he would scream for 20 minutes because it was time to get dressed or what we were dressing him in wasn’t in line with his current fashion sense. It wasn’t really that of course, it was sensory, it was us not marching in line with the little drummer neuron pathways in his brain. I’ll never forget the summer we put a t-shirt on him for the first time. He screamed and cried and tugged on his short little sleeves in the most valiant attempt to extend them down to his wrists. At the time I was alarmed, confused, knew in that little pit in the corner of my heart that something was not quite right here. And now when I look back, I see we were both confused, both alarmed; he at the sudden, abrupt and unexplainable shrinking of his shirtsleeves.

I’m not a person who takes failure lightly (perhaps another reason I stopped writing… but I digress). On top of the already intense post-partum depression, the mental beating I was giving myself because of my ‘failures’ was brutal. I had these incredible ideals about what we should be doing with him, what we should be feeding him, how we should be parenting him, what toys he should play with, what clothes he should wear. I had rules. So many rules. Some of them, it turns out, were the right thing for him. Those must have come from that mama bear place of knowing. The rest were born out of pure fear of failure with a heaping dose of anxiety mixed in.

I had friends, one of them who has since become rather infamous in the mommy blogger world, who lived (and is living) that dream I had. Everything is wood and wool and organic and so close to nature if they aren’t careful they’ll compost themselves by accident. Many of my friends homeschooled, something I desperately wanted to do, but financially was not even close to being an option. I was terrified of being found out as a fraud. I wasn’t really crunchy; I looked like I was, but when you took a bite out of me, I was kind of chewy and maybe even a little stale. I didn’t fit the mold and though I tried, according to the checklists I was certainly no ‘attachment parent’. But I kept trying dammit, white knuckled and the whole bit, I wanted to be the parent I thought I “should” be, not necessarily the parent I was or needed to be.

Right around the time he was diagnosed I had a falling out with one of my friends; one whom I held in extremely high esteem. I always told myself I wouldn’t put anyone on a pedestal, and maybe I didn’t exactly do that with her, but I really deeply cared what she thought. It was the separation from her then the subsequent separation from my ex that allowed me to release some of the shackles I’d locked myself in. I realized that in so many ways she was wrong and what was right for her family, was simply not right for mine. Coincidentally I also returned to work in a field where parents are abusive to their children and that was the final click, the final release.

What I was doing may not have been perfect in the unrealistic ideal I had set for myself, but on the parenting continuum, I was doing a phenomenal job. Sure I yelled and we didn’t eat 100% organic and I didn’t make all my kids clothes. And there were times when I was doing an even worse job, but made improvements, adjustments, moved forward. Given the circumstances, we were doing okay. There was plenty of room for things to be better because isn’t there always? Yet I wasn’t focusing so much on what I wasn’t doing anymore, I wasn’t so fixated on my failures.

This is what I said to the Man last night in the middle of a conversation where he was critiquing a parenting decision I made (an insidious one if you ask me, but a point he felt like belaboring nonetheless, over what would ultimately be that picture at the top). I am a good enough parent. I love my children, I connect with them, I listen to them, I feed them healthy, nourishing food, I try to have a nurturing emotional environment for them. I’m leaps and bounds ahead of my own parents in these departments (who did exactly the best they could given their circumstances). I’m not perfect. I’ll never be. But I’m real. And those bald spots you see, those are where I’ve rubbed up against what wasn’t working to squeeze my way towards what would work. That is all I can do. To try to do more, to try to attain elusive, perceived perfection will never happen and I will die trying. I’d rather live my imperfect life than stop living trying to attain a ‘perfect’ one.

Parenting is hard enough work. Constantly placing ourselves in a line up with other moms and comparing every last detail to our own parenting work does nothing to help us be better parents and better people. Owning our successes, our failures and being willing to work to change what isn’t working (and to know when it’s okay to just stay still) go a lot further. We can learn from other parents, other people’s experiences, but can’t ever make their’s fully our own because intrinsically, it’s not. We can only take the bits that fit into our puzzle, but can’t make ourselves crazy trying to fit a square pegs into round holes.

I was thinking about my dad the other day (I’ve been thinking about him a lot lately, but that too is another post, and a host of therapy sessions, for another day). I realized that my greatest accomplishment and the thing that so vastly sets me apart from him as a parent is admitting when I’m wrong. We all make mistakes, we are all human. When I do the wrong thing, I admit that to myself AND to my children. Showing them my humanity will put them in touch with their own. It is perfect to be imperfect. It is okay to apologize to children. In fact, I’ve been waiting my whole life for my father to do just that. My children though, will never have to wait.