Monday, March 25, 2013

Mindful parenting in my world

Your children are not your children. 
They are the sons and daughters of Life's longing for itself. 
They come through you but not from you, 
And though they are with you, yet they belong not to you.

--Kahlil Gibran

One of my favorite parenting books is Everyday Blessings: The Inner Work of Mindful Parenting by John and Myla Kabat-Zinn. It's one of the few parenting books that doesn't sound hollow when your child has special needs. Most parenting books highlight so many milestones, expectations, discipline choices, and interactions that are different from our norm, and so I've given away most of my parenting books (especially those on sleep--bwa ha ha).

I read Everyday Blessings when Soren was two, and I've picked it up again because a dear friend and I heard the authors speak a few months ago. I'm surprised at how relevant this book is to me now, as a different kind of parent. I love that these truths still stand.

Here are a few snippets that caught my eye again, from the list of twelve exercises for mindful parenting.

#1: Try to imagine the world from your child's point of view, purposely letting go of your own. Do this every day for at least a few moments to remind you of who this child is and what he or she faces in the world.

#3. Practice seeing your children as perfect just the way they are. See if you can stay mindful of their sovereignty from moment to moment, and work at accepting them as they are when is it hardest for you to do so.

I can't help but counterpose Everyday Blessings with another book I've just started, Far From the Tree: Parents, Children, and the Search for Identityby Andrew Solomon. They complement each other well, at least through my filter as a mom of an atypical child.

Solomon uses "horizontal identity" to describe what happens when a child has a trait that is foreign to his or parents (such as hearing parents' having a deaf child). Instead of relying on the vertical identity passed down through generations, the child acquires horizontal identity from a peer group of those with similar traits.

A snippet:

Because prospective parents have ever-increasing options to choose against having children with horizontal challenges, the experiences of those who have such children are critical to our larger understanding of difference....These parents are profoundly changed by their experiences. Such parents tend to view aberrance as illness until habituation and love enable them to cope with their odd new reality--often by introducing the language of identity. Intimacy with difference fosters its accommodation....
The parental predisposition to love prevails in the most harrowing of circumstances. There is more imagination in the world than one might think.

What strikes me is that our children are not extensions of ourselves, and they shouldn't be. They are sovereign, as the Kabat-Zinns would say. We can have incredible love for our children, but they might have real differences that we may never (or could not ever) truly understand or take on. Having a child with special needs reminds me of this truth. The difference broadens us, however. We can't rely on how much our children are like us; we are forced to see their whole person, including their differences, and we love them in spite of and because of and alongside of those differences.

It makes sense that I contemplate difference and aberrance a lot, as I have just one child, who has special needs. I wonder if these truths would still apply if I had a typical child. For you parents who do, does this issue of sovereignty and difference in our children resonate with you, too?

Wednesday, March 13, 2013

More questions than answers

I want to ask you, as clearly as I can, to bear with patience all that is unresolved in your heart, and try to love the questions themselves, as if they were rooms yet to enter or books written in a foreign language. Don't dig for answers that can't be given you yet: you cannot live them now. For everything must be lived. Live the questions now, perhaps then, someday, you will gradually, without noticing, live into the answer.
--Rainer Maria Rilke, Letters to a Young Poet

We completed our EEG testing for Soren yesterday, a day early. He did great, considering how scary and invasive the whole procedure was for him. I wonder if he comprehended what we were doing and why. The idea that he didn't makes me feel so sad and guilty. At one point during the removal of the probes I had to get on the hospital bed and pin his legs down with my own body (while Erik and my sister held his other limbs and his head). I can't imagine his anxiety.

The test is inconclusive--there was no evidence of the disorder we thought he might have, the disorder that would explain so much. There were signs of EEG abnormality, however, so Soren is at elevated risk of seizure (which we've never seen evidence of). 

Erik and I are still processing the meaning of all of this and starting to approach and research next steps, which may include genetic testing. I'm overwhelmed and confused about how to proceed. We're kind of on our own on this path; since it doesn't seem to be a neurological problem, the neurologist is just referring us to other types of specialists. 

I'm also sifting through the whole idea of more tests: Whom do they benefit, really? Are there treatments to be found in these tests or just names of disorders? Does testing's value outweigh the trauma that's caused to Soren when we agree to have him prodded so much?

Today, I'm just upset that we don't have answers. Selfishly upset. Answers would have ordered my world a bit. Maybe they would have helped me predict Soren's future a bit--I guess I mean my future. I'm not so good at this living the questions stuff.

Monday, March 11, 2013

All through the night

When Soren was a baby and needed lots of rocking and singing and nursing to fall asleep, I looked up the lyrics to a bunch of lullabies, since I was running out of songs to sing to him. I was struck by how depressing and harsh most were. They were in minor keys, and had lyrics about cradles falling out of trees, bribing with fairly large gifts (pretty horses? mockingbirds?), and mothers going away or toiling away in fields. But I rediscovered the Welsh lullaby All Through the Night, and the sweet melody and gentle lyrics were the perfect fit to lull my insomniac to sleep.

Sleep my child and peace attend thee,

All through the night
Guardian angels God will send thee,
All through the night;
Soft the drowsy hours are creeping,
Hill and vale in slumber sleeping,
I my loved ones' watch am keeping,
All through the night.

Angels watching, e'er around thee,
All through the night
Midnight slumber close surround thee,
All through the night
Soft the drowsy hours are creeping,
Hill and vale in slumber sleeping
I my loved ones' watch am keeping,
All through the night

While the moon her watch is keeping,
All through the night
While the weary world is sleeping,
All through the night
O'er thy spirit gently stealing,
Visions of delight revealing
Breathes a pure and holy feeling,
All through the night.

And now we're in the hospital for a 48-hour EEG. Two full nights of sleep. We need to see abnormal activity during sleep to be able to finally diagnose the rare disorder that we suspect Soren has (Landau Kleffner Syndrome). It would explain his complete loss of spoken language and even some regression in spoken language of late. We've had three EEGs before, none showing sleep disturbances, but the thought is that with two nights at the hospital, Soren might relax into a routine and achieve more typical sleep by the second night.

It's so hard for all of us: hours of boredom for a kid who doesn't play with toys; endless physical prodding that is so traumatic for our boy; change in routine, which is also so upsetting for him. Oh, and I get to sleep on a cot for two nights (on monitored night-vision camera no less).

Will you keep us in your thoughts and prayers? May peace attend him as we keep watch all through the night. 

Wednesday, March 6, 2013

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.

Friday, March 1, 2013

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.


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