That comment was a bifold WTF to me. It dismissed the point of my essay (the horrifying dichotomy in our society's perception of parents who murder their children: with disabled children, it's considered understandable because of caregiver stress; with non-disabled children, it's considered unforgivable). But that commenter was also making a huge assumption about me.
Because I'm not strong. I'm lucky. I have a great husband, great family support, Leo goes to a great public school, he has great respite -- and I belong to great, neurodiverse autism communities both offline and on. Those communities are generous in sharing their experiences and helping me learn to both understand Leo better, and be a better parent to him. They are strong. I am not.
|[image: Me and Leo in front of a giant|
Thing is -- and I want to be clear on this -- my depression has very little to do with being an autism parent. Some of it has to do with parenting, most has to do with not being able to fix very, very broken matters: divorce affecting people and children I love, or seeing the best people in the world wrestle with cancer. There's nothing I can do about the divorces and disease. And I'm a fixer, a doer. Helping, fixing, signing off, pressing send, checking that box and moving on to the next task is what keeps me fulfilled and happy.
Not being able to fix things fucks me up -- there's no non-NSFW way to describe it. That is why, when Leo was first diagnosed with autism in 2003, and media portrayals of autism were all horrorshows and head banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I usually sleep like the dead), and occasional pulling my car over because the rules of the road would cease making sense. I was depressed because I thought my son was broken, and I didn't know how to fix him.
And it took years, but I eventually realized that parenting is not about fixing. It's about supporting, accepting, finding best practices, and fighting for your kid's rights. It's about unconditional love. And it's about putting your kids first. About making other people see your kids -- and kids like them -- the way you do, the way every kid deserves. About accepting the changes kids bring to your life, even if they weren't what you expected.
I don't want any autism parent to have to go through the new diagnosis depression grind I did; that is why Thinking Person's Guide to Autism came into being. But even the most fabulous autism book in the world can't magically fix everything for parents as long as our society continues to portray autism as The Worst Possible Thing That Could Happen To Your Child. There's still the initial shock to get over, accepting that this Worst Possible Thing could happen to you. And then, hopefully, the epiphany that autism is not The Worst Possible Thing, after all. That you're all going to be OK, and that you're not alone.
But even parents who ramp up quickly to accepting their child as autistic still need time to adjust. Anyone does, when they go through a significant reality rearrangement. Depression and anxiety are understandable during that transition. And anyone who is depressed deserves help. The need to get help is all the more critical when the depressed person is a parent or caregiver.
For me, the tragedy sets in when those parents -- through isolation, lack of support, or through communities that reinforce negativity -- continue to believe that autism is The Worst Possible Thing, are never allowed to consider the joy so many autistic children bring to their families, never get to make contact with the many many amazing autistic adults whose stories and very existence defy mainstream negative autism stereotypes. I don't know what I'd do or where I'd be if Leo and I didn't both have supports and understanding and community. And I worry, a lot, about the children and families who don't have what we have. That is why I do the work I do.
Anyhow. I'm now a veteran autism parent, and I'm lucky. I don't worry over autism as a nasty boogeyman that I can't fix, or could fix if I tried hard enough (a quixotic and demeaning approach at best) -- I worry about my beautiful son, who is autistic. I worry about what he needs from me, and whether I'm a good enough parent, a strong enough person to provide it. Mostly I just do my best to support him.
It's not always easy. Sometimes it sucks. Like right now, when Leo can't be in the same room as his little sister, because he's in an aggressive phase, and she's a shrieker. But you have to understand that my resulting, heart-cleaving sorrow over Leo's and Mali's standoff is no different than when Leo's sisters are locked in an impenetrable yelling cycle. My sorrow comes from the helplessness of not being able to instantly make everything better for my children, these three people who were ripped from my soul and whose unhappiness has the power to destroy that soul entirely.
I'm going to be fine, I've waited out periods like this before. When my kids aren't trying to take each other out, they are my joy and solace, as is my husband. And I have my techniques for keeping my nose above water -- I do a crossword puzzle every morning to keep my brain from rotting out entirely; I listen to our local, reinstated classical music station in the car; I make myself checklists of tasks that result in physical manifestations of done-ness, and allow myself to attack them in phases if need be. It all helps.
I'm not strong. But I'll get by. Sometimes, that's all any parent can do.
Thank you, Shannon for your honesty and courage to share what many parents would not otherwise. I enjoy reading your posts and find myself relating to many parts of your journey as I move along mine with my son who is 6yo.ReplyDelete
Thank you. Please let me know if I can help or point you in a specific direction, any time.ReplyDelete
((Shannon)), if there's any way I can help, please let me know. You are an amazing person - reflective and honest and open - and that comes through, through your parenting, your connecting with people, your wanting to help, even through your difficult times. Thank you for all that you give and keep giving.ReplyDelete
I'm so sorry that you're having a hard time right now. I also have problems with depression and it so hard and hopeless feeling. Love you.ReplyDelete
Brenda & Stimey, thank you for proving my point so beautifully -- friends & community can make all the difference. xo to you both.ReplyDelete
Left this comment over at the TPGA FB page, C+Ping it here so it can be part of this discussion. Another response to another parent of a similar mindset to the one who touched off this post:ReplyDelete
"...it boils down to treating & writing about our children and autistic people the way we want others to treat them. Autism is not a disease, and there is a difference between saying you want to cure autism (you do not accept your child for who they are) and wanting to help them live the best life they can through support and therapies that have been show to improve quality of life -- and avoiding those whose goal is purely to make autistic people be "normal." Because there is no such thing as normal. Autistic people have always been with us -- people like Leo and [your child] as well as those who write for and comment at TPGA. And those autistics who come here [TPGA FB] are generally very frank about their challenges -- about what parts of their autism are indeed gifts, and which parts can make day-to-day functioning difficult. All of which helps parents (and the rest of the world) comprehend that autism is a variation on being human.
"As for parenting being hard, yes, you can check my personal website for my recent thoughts on that matter [hello!]. But it's not because of Leo, or autism -- it's because I love my kids, and I resent the assumptions people make about Leo because of his autism, and when things are hard for him or his sisters, I can't magically fix everything for them or guarantee their happiness. So it's really critical to not blame or lay fault on our children -- because as a wise person [Jen Myers] recently reminded me, however hard you feel it is to be a parent of an autistic child, it's a lot more difficult to *be* an autistic child in a world that is not built for autistic people. Also, publicly saying that "autism is hard" further stigmatizes autistic people of all ages. Is that what you want for your [child], for people to see him as 'less than'? Now, and when he grows up?
"So when it is hard, reach out to community, find the people who can help support you and your son and get you through times of distress. If you're not in a space yet where what I've written makes sense, or if you're still angry, please save these comments and look at them again in a year or so. But I hope you eventually find a way toward peace and acceptance, because that's what your son needs from you."
Thank you for sharing this post, I'm bipolar and deal with mood swings. That's hard with a litle guy with Autism. I can relate to this post and I have found that I'm not alone. I love my blog community sometimes even more then my community in my backyard. I will keep you in my thoughts, take care.ReplyDelete
I can't believe you don't think you are strong. Writing about your struggles is one of the most courageous things you can do. I personally believe that is strength in and of itself.
I am in the process of opening a center for autistic children AND their families. The idea is that in one building, there is a team of therapists dedicated to supporting everyone in the family with their own individual needs that are associated Autism. I don't know what area you live in, but I would love to talk to you a little bit further if you have some time. If you live in my area, I think you and your family might be able to benefit from what we offer. If not, I would owe you endless gratitude for your advice in creating the perfect center for families dealing with autism.
My email address is firstname.lastname@example.org. Please shoot me an email if you would like to chat.
All the best to you,