My evolving relationship with autism

“The child may have a disorder or a set of problems, but he is not the disorder. 

He is a human being with real feelings, real desires, and real wishes.”

Stanley Greenspan, Engaging Autism

I'm involved with a monthly support group for parents (in reality just moms) of kids who are significantly impacted by autism. It's a great place to vent, cry, and share the moments that are too embarrassing, gross, shameful, and sad for us to share with general friends and family.

What I've learned these last few times at the group is this: I'm doing OK. Our family's doing OK. And that's not the case for the parents of newly diagnosed parents in the group. They frequently use words like "nightmare" to describe their situation. They talk about "progress" and even "cures," and recite the lists of therapies, both proven and experimental (and sometimes dangerous), that they are trying. And I totally get it. This is not the parenting we expected. And, especially at first, we fight this diagnosis.

But autism is not a nightmare to me right now. And that means I've evolved on this journey.

The first step for us upon Soren's diagnosis, two years ago, was shock, of course. Well, that's not exactly true. We suspected this, but we held out a little hope that our intuition was wrong. It's just that having an expert say that word--"autism"--makes you forget to breathe for a minute while you rewrite pages of expectations and hopes and assumptions about how your family life will look.

Grief sets in, but it's coupled with this weird panic to Get My Child In Therapy Right Away, since the biggest impact therapy can have is early therapy, or at least that's the current message in the media. Hurry! The window is closing! Soren was already 3.5 years old when he was diagnosed, and I already felt late.

So we scrambled to line up therapies, to get on waiting lists, to get more evaluations, to fill out paperwork. We fretted about how many hours of therapy and school we needed to give our boy, and we struggled with how many hours the experts recommended (20 to 40 hours?? For a 3-year-old??) We signed up for occupational therapy/Floortime, speech therapy, psychotherapy, ABA therapy (with both a consultant and an in-home aide), and a developmental preschool. We started researching "the diet"--a very common diet that eliminates gluten and casein and has anecdotal success with reducing some problematic behaviors and improving communication among autistic kids.

We were desperate for "progress," "improvement," and dare I say, "a cure."

And there's now.

I'm not sure when it happened, but I find myself leaning in to this autism diagnosis and all the unknowns it brings. I sit with the possibility that no real breakthroughs will appear, that Soren will not speak, that he'll continue to exhibit autistic behaviors. And I mourn, but it's a mourning for my nonexistent plans and expectations about parenting, not (usually) for my child. I have a degree of acceptance, and I love the child that IS rather than loving the child that we thought we had (or had hoped he would become after all the therapies). Now I do not expect or work for a cure in Soren.

I think this evolution in my relationship to autism is a benefit to Soren. When we talk about "curing" or "defeating" autism (which is prevalent in the autism-parenting community), there's an inherent message that it's the child that is deficient. He's Less Than he could be/we want him to be, and Only When he is cured will everything be OK.

Don't get me wrong. I hate many of the ways that autism makes life difficult and scary for my son (anxiety, fear, overwhelm, inability to fluently communicate, loss of skills). And I hate how hard this parenting is. But autism is not the enemy; it's part of who my son is, what defines what he's like, at least in part. Hating autism is hating part of my son.

This viewpoint is still evolving for me. There are many days that I would do anything to have my son miraculously cured of all the tough stuff of autism. And oh, to hear his voice would be amazing. But I truly believe that accepting who my son is--RIGHT NOW, with no conditions--is a huge gift that I can give my boy. I never want him to think that he is not quite enough, that there is a huge list of deficits for him to address before he is worthy of our full acceptance. What if he never progresses in his behavior, academics, language--or what if he regresses even more? What if he does continue to develop socially inappropriate behaviors? I am working on accepting whatever comes. But curing, changing, correcting are not going to be my ways of loving my son.

------
Two recent articles have solidified my view on this topic:
--Kristina Chew's article on whether we need to be curing autism.
--Brenda Rothman's article on how autism is not parenting fail.
Thanks to both of these women for helping me along in this journey.

This is me

Sweats and a bathrobe at 5 p.m. 'Cause it's Friday and the last day + night have been hard.

Enjoying Erik's Pandora selection--what is this, anyway? Singer-songwriters of the '70s?

Working through the dance that is anger and forgiveness--going both ways for each of us--after a sleepless, raging night with Soren last night.

Eating a bit too many chips out of the bag at the open cupboard. Comfort.

Supremely thankful that Erik brought home takeout from the Mojito Cafe (and fixating on the idea of a mojito right now).

Ready for the close of this day.

Static

Weeks ago I wrote a post about recent mindful parenting thoughts. It's just sitting on my Posts page, ready for me to hit Publish. But it just hasn't felt right to post it. Talking about really seeing our kids for who they are and living in the present with them seems inauthentic. The truth is, I haven't been practicing mindful parenting--or really, mindful being--much these days. I'm checking out more and more, and I look forward to my end-of-the-day alone time much more than I have in the past. (Is it 7 pm yet??!)

I've been feeling like I'm not on my family's team. I'm short with Erik, and Soren is downright bugging me, if I'm to be honest. (Must I pin you down to brush your teeth EVERY TIME?) Being in the house gives me an itchy, restless feeling. My knitting is collecting dust. I'm claustrophobic.

Why do I find myself here? Is it the Seattle February blahs setting in? Am I just bored with the routine of my days, sans job other than the pretty demanding one of parenting a special needs kid? Do I need more intellectual stimulation? Or is this just the rhythm of life--sometimes we are truly relishing each moment and sometimes we just can't wait for a different batch of moments?

What about you? What happens when you're in a slump? Do you punch your way out of it with activities and distractions--girls' nights out and Law & Order marathons and hours on Pinterest? Or do you just hunker down and let it run its course? Or perhaps you don't even realize you're in a slump until it's over.

I have hope that I will eventually publish that mindful parenting post and really mean it. In the meantime, I'm going to play another game of Sukodu.

Forgetting

Recently my mother-in-law showed me a scrapbook she's made for her five grandsons. She has pictures of Soren--as a baby, toddler, and preschooler--that I hadn't seen before. It's a beautiful book. But seeing the pictures was bittersweet: I love seeing those chubby cheeks (oh, my), but I hate being reminded that there are parts of my child's younger years that I don't really remember.

There, I said it. I've known this for some time, but I haven't really explored why this is. I'm afraid to know the reason(s). I also don't want to dwell on this because it brings up all sorts of bad-mom triggers for me.

Part of the reason for the blanks is the far-reaching effects of postpartum depression. My postpartum depression was acute when Soren was about 3 weeks old to about 3 months old, and then it festered in the background until he was 8 months. It was hard to feel joy about my sweet baby. I didn't relish the milestones at all. I don't remember when he said his first word or when he first crawled. Heck, my child doesn't even have a baby book (insert major guilt pang here). So much of that first year was a blur, an exercise in just getting through the day. When you're just existing, it's hard to remember the daily details.

And then there's the impact of Soren's regression since about age 3. I know I've dissociated from his past in order to deal with the pain of the regressive changes in him. I simply cannot tolerate remembering his first phrases, his favorite toys, how he used to delight in peers at preschool. It's too much. So I don't think about the past. And frankly, the future is pretty scary, too. So I'm mired in the present. In many ways, it's a great outlook and it may be healthy. In part. I think.

I wonder sometimes if this is the time that I could make peace with the last five-some years. Could I attempt some scrapbooks or a baby book now? Am I ready to look at all those babyhood videos? I don't know. I'm afraid that doing this will reveal how little I remember.

And I'm afraid that it will reveal how much I remember.

Latest obsessions

What have you been wasting spending your downtime on lately? Here are a few things that are filling my moments:

1. Goodreads. I'm addicted. It feels like spying to see what friends are reading and how they rate their past reads. And the recommendations seem spot on. My list of to-reads is ridiculously long. I've also set a Goodreads goal of reading 50 books this year, but I'm thinking that might be a bit optimistic. 30?

2. KenKen. Kind of like Sudoku but with a bit more math.

3. Learning PhotoShop. We "won" a copy of PhotoShop at an auction this fall. So this is more of an aspirational obsession. But I'm looking forward to digging in and learning it.

4. Soups. The Seattle winter blahs have set in. I noticed most of my dinners feature homemade soup. My favorite is French Onion, but boy, that requires a long time. Another favorite is cheater black bean soup:

1 container of fresh or bottled salsa, 2 cans drained black beans, maybe some canned crushed or whole tomatoes, maybe some fresh kale. Simmer the salsa, add rest of ingredients and cook 5 minutes, then add vegetable stock (4 cups or so) and simmer 30 minutes. I usually run a hand mixer for a few seconds to smooth things out. Oh, and add some sherry at the end to deepen the flavor.

5. Candles. Maybe related to the winter issue in #4. I'm not yet ready to give up the Christmas candles and twinkly lights. Lately my favorite candles are from Zena Moon. I love how they give their candles themes and list on the Web site related books and music that might interest you.

Do you have any recent obsessions that you'd like to share?

So proud

It's time to drop everything and celebrate a success. 

I'm so glad I have Erik to help me see the pure goodness in even the smallest victories with Soren. I confess I can get so caught up in Soren's therapies and appointments that it's easy to focus mainly on his deficits--those things we're working on. When I'm in that vortex, even Soren's accomplishments are colored by comparisons to others or comparisons to where we want him to be. It discounts Soren's skills and effort. 

But Erik has a way of seeing victories so purely. Soren's swimming is one of those victories. I thought I'd share two e-mails that Erik sent out to family and friends in the past weeks. (I love that he was so impacted by Soren's progress that he immediately composed these e-mails.)

Here's the first:

After two weeks of swimming every day in Maui and the past two years of swimming every weekend wearing his assisted swimming learning vest, Soren jumped in the community pool here in NE Seattle without it, and swam the width of the pool on his back without his vest and unassisted! 

Not bad for a 5 year old kid with autism! I was so proud of him that I cried. 

It is a Merry Christmas!

And here's the second:

Several of you know that a few days ago, Soren swam the width of the pool at our health club on his back unassisted and without his swimming aids.

Well today, he swam on his stomach, head down, face in the water, eyes open (still refuses to wear goggles), and kicked and paddled his way unassisted and without his swimming aids for just under 10 yards. We did that distance three more times.

Then he swam the entire length of the pool from the deep end to the shallow end, unassisted, which is 20 yards in length (raising his head for air about 4x during the whole lap). 

At this rate of improvement we'll have our own Michael Phelps in no time.  WTG Soren!!!

I'm taking notes on Erik's whole-hearted appreciation of our son. I'd like to be able to relish Soren's many strong points with him without burdening him with the expectations and comparisons that I tend to bring along.

Soren, you are a wonderful swimmer--so brave and strong. We are proud of you. That is all.

Fresh start

Happy new year! It's been a quiet celebration over here, as the whole house has had strep for days. I forget how the malaise and boredom of illness can make time stand still. I lost track of whole days. Of course, I was in bed, groaning, while Erik and Soren were troupers and even went swimming together in the middle of it (before we knew they had it, of course).

I've just started to think of my Word of the Year for 2013. I like the idea of using a word, not resolutions, to guide my year. Resolutions sound like too much work, like someone is forcing a project on me and grading me on my effort. The right word, however, seems creative and open-ended, which is more my style. So I chose MINDFUL as my word. I like how it can apply to so much: attentive parenting, conscious eating and exercising, really listening to a spouse, limiting Internet time, even enjoying my Americano a bit more. I've found myself zoning out this year, sometimes when things are hard, sometimes when they're mundane, and often just as habit. I want to be more aware of what I do, say, and experience. I'm still playing with just how I'll incorporate my word into my daily life. Is it a mantra I say to myself? Do I print it out to hang on my mirror? Do I get a word tattoo? (just kidding, Mom).

What about you? Do resolutions work? How specific do you get? Are words or phrases more your thing? Or does this practice sound entirely too forced for you? I'd love to know what you'll do this year.