Controlling Myself

I remember as a child spending days questioning if, given the choice between two losses, I'd rather lose my hearing or my sight. I tried walking around with my eyes shut, I tried spending a day in silence. I framed it as a question of loss, and survival. I was kind of a brooding kid, sure, but I imagine plenty of people think about these things growing up, wondering: Could I face loss? Is one kind of suffering better or worse than another? Humans by nature compare. That seems somewhat universal to me. What strikes me as the funniest thing about the way I framed the question is the part about, "given the choice." Control freak that I am, right? As if, right?

Yes, wouldn't it be lovely if we could CHOOSE to be given the challenges for which we are best suited! Life should hand us little check-the-box surveys, and then parcel out our offspring appropriately, too...

I grew up with a chip on my shoulder... er, um, I mean, a mantra, that said, "I LIKE hard work. Bring it on. Easy is for wimps." Before we married, I tried to convince my husband to join the Peace Corps with me not for a better reason than that. The one big fight we had while dating was because I jumped to the conclusion that he grew up "on easy street" which I, in my overly sanctimonious ways (forgive me, I HAVE matured some in the decade since then) believed made him "soft." I thought having a dysfunctional family qualified me as some kind of martyr! I had this notion that I paid some "dues" - whatever that means!

It all seems pretty silly now, and I am sure I still have PLENTY more to learn about my own foolishness. My plentiful foolishness.

But one prism through which I've come to better understand how foolish my controlling nature is has to do with the way I have been prone at times to compare special needs parenting.

For as much or as little as you can categorize kids, or special needs kids, I have found myself at times lumping kids with autism into the ill-fitting and unhelpful boxes of "more hyperactive" versus "more withdrawn," and when I have done this I have (foolishly) lamented that I am having a hard time parenting a "more hyperactive" son when my nature perhaps might be better suited to a "more withdrawn" one. If you are currently UNFRIENDING me on FB, just know that I don't blame you, but I really am working on being less controlling, foolish, and, um, stupid. (Just don't call it a New Year's Resolution, because I don't make those...)

To me, there is about as much point in thinking, "I can't handle my hyperactive son," as there is in saying, "You were given this challenge because you are strong." I don't believe either of those two things. As I posted a while back, I've already come to terms with, "You get what you get and you don't get upset," and I certainly have learned that there is no measuring contest for grief and suffering, no prizes awarded. I have also learned that if there were, I wouldn't be anywhere near in the running (not that I mean to tempt fate). Now I'm striving to master the notion, "Life is random and mysterious; live in the now."

The truth, and the confession that I'm baring before you now, is that sometimes when one of my friends laments how hard it is to get their child to play with others, or to take an interest in toys or friends, I feel this tiny reaction that hearkens back to, "I could handle deaf, because I'm not so auditory really anyway when you get done to it, but BLIND? And never READ again? Or SEE my family? NO WAY! Then I'd DIE." Well, I guess more accurately, what (stupid) my knee-jerk reaction says is, "I'll trade you. At least your kid doesn't DIVE INTO a park full of strangers and act SO WEIRD that kids scatter. At least your kid doesn't walk into most groups of other children primed to start a gigantic conflict!"

As if, right?! As if my lot is tragic, or the lot of the child (and mother of the child) whose autism isolates them quietly is not... again, as if there is a quantifiable better or worse to the spectrum of autism's challenges. As if my angst of my son's frequent conflicts would vanish like magic if he retreated into himself more and engaged the world less. (Whoa... Can I unfriend MYSELF? But no, I forgive me for my foolishness because at least I'm trying to learn better.) Of course I recognize that I would not really "trade" my son for anything.

I am telling you that I am not proud of my knee-jerk comparison reaction, and that by broadcasting my own ignorance, I hope that I help improve my own perspective. No, I'm not exactly going to through a celebratory party that my son sometimes hurls himself toward people in awkard and destructive and alienating ways, but I MUST remember, and I WILL remember to be grateful for his friendships, for the empathy he shows sometimes when someone cries, for his passion for life and life experiences. By writing this post, I help myself in the practice of remembering and appreciating. Our journey is to help the Rooster also find centeredness, calm, focus, self-control. Our journey is not so very different from the journey of a family trying to help calm, focused children on the spectrum express their empathy and passion. As the saying goes, "We all have our stuff."

In my quest for getting my head screwed on straight, and in search of that elusive PERSPECTIVE I yammer on about trying to find, I need to post about how I am learning that:

• no one goes through life unscathed, but that doesn't mean there is no JOY along the way;
• there are no "points" for suffering;
• your suffering is not BETTER or WORSE than my suffering;
• your kid is not BETTER or WORSE than my kid;
• my kid's challenges are what I need to deal with, and I bring my own baggage to those challenges, with which I also must deal;
• I have as much or more to learn as my son;
• trying to control the universe and resent it for not complying, rather than trying to become a more patient, resilient, and accepting human being, makes me a kind of deaf and blind that I CAN choose not to become.

I Thought...

I haven't talked much about this, but I have often remembered the first time I ever wondered: What if I had a child with autism?

This was well before we had reason to suspect that we already did.

My baby boy is less than a year old. He has had my heart for far longer than he's been outside my body. I fill journals with letters I write to him, pouring out my love and all my wishes for him -- a precursor to this blog. We are living in our first home, our condo. We are downstairs, we have the TV on, I'm wearing sweats. The Rooster is a sweet, slobbery, difficult baby who sleeps poorly and catches every germ, and he is gorgeous and charming too, and I am still more giddy over his existence than I am exhausted, but only by degrees, and not all the time. Parenthood strikes me as harder than I had expected, though I had not expected ease. Already I frequently feel baffled and awkward at mommy/baby groups but I keep thinking of it as a mommy problem, not a baby problem.

The Rooster is playing on the floor, not too near the TV, because we have been careful not to let him get too much screen time - hIt will be a year before I introduce him to Sesame Street (when my very pregnant body needs a rest after I feed him dinner and before daddy gets home), and I still am allowed to watch things that interest me on occasion. He is playing with farm magnets while Good Morning America is on, and the doctor is doing a medical story about "The Tilt Test." The idea is that you hold your baby in outstretched arms, then tilt him to see if he allows you to, or if he leans his body in effort to not tilt, or something like that -- somehow your baby's performance in this maneuver will indicate to you if he might have autism.

I immediately pick up the Rooster, and my heart starts to pick up its pace. The question has arrived, and we are tilting. The doctor in TV Land indicates babies will clearly do X or do Y in response, but not my baby. My baby seems to do kind of an XYZ thing. Inconclusive, if you even believe the validity of such a test, which I find dubious. I hear the question spoken inside my head: What if? And I think to myself this premature, uninformed, knee jerk thought: "Nothing could be worse than autism." And next I think, "I couldn't survive if my baby had autism." I have no reason to believe my child has autism, and for a moment I am caught shocked by the knowledge that I have neglected to worry about this ism, and in my neglect I have surely jinxed us into increased vulnerability. To make up for lost time, I begin to apply myself to worry about autism, which I know precious little about, in the hopes that worrying about it will serve as protection. I assume having an autistic child means never hearing your child tell you, "I love you," and I imagine that this is the worst thing that can happen to anyone in the whole wide world. As I listen to the morning show segment, hearing the word "autism" over and over again, I picture stereotypes of hopelessness and isolation. I make my boy cry as I keep trying to tilt him, and each time the outcome is inconclusive.

In another couple years, while we muddle through more inconclusive times, when we are asking ourselves these questions again, I will begin my education about autism and children with special needs. I will have as much to unlearn as to learn, and that is saying something.

I'm not a perfect student, and I am still forever asking my husband: Will he be okay? And my husband is forever answering me: He already is okay.

I read at Hopeful Parents today an interesting essay that said that kids with autism are not less -- in fact, they are more. Then have much to teach us. Not everything in the essay resonated for me, but that part sure did.

I've had a little holiday time off, and so I loaded the Kindle software on my phone and read "What I Thought I Knew," a memoir of a special needs mom's unique journey to special needs motherhood. I highly recommend this fascinating story of a divorced woman who discovered in a very unorthodox way that she was already sixth months pregnant, and that her child is likely to have special needs. She is not sure she wants to have or to keep this baby, a baby she did not plan for, a baby for which she is unprepared, a baby likely to have many challenges. She punctuates her tale with lists of things she thought she knew along the way, and then goes on to show you how wrong she turned out to be.

Earlier this month, I woke up with a strong urge to know how those of you who read this blog would complete the sentence, "I thought autism..." I wasn't sure why I wanted to know, and I hadn't yet read the memoir, or even heard of it. Those of you who commented really described similar suppositions to the ones I held. You said things like, "I thought autism was kids who couldn't talk and who just rocked back and forth," and, "I thought autism could only mean 'unreachable'. "

In that vein, here are things I thought I knew, in my own journey as a special needs mama.

1. I thought I knew what autism looked like.
2. I thought I knew that having a child with autism would break me.
3. I thought I knew what happiness looked like.
4. I thought I knew how to make sure I raised a happy child.
5. I thought I knew how to prevent bad things from happening by worrying about them.
6. I thought I knew everything I needed to know about hard work, and that I would always enjoy working hard at any challenge

Here is what I know today:

• I have a child with autism. He tells me he loves me in so many ways, not just with words alone. He is not broken, nor are my friends' children who cannot say the words out loud. I am not broken, either. We are only as isolated as we choose to be.
• Happiness looks different than it used to, and I get my share. I cannot GIVE my children happiness, but I hope I am helping them find, create, and embrace it.
• Worry is just a black hole where time gets lost. It tugs at me all the time, but I fight to keep it from sucking me completely inside its vortex.
• Sometimes life is hard. It is a work in progress. It is at the mercy of time.
• Life changes, and life changes us. Much of what I believe I know at any moment in time will require some serious unlearning and relearning later.

What about you. What do you know? Is it what you thought you knew?

411?

Calling all wise advisors:

Irlens Syndrome: Heard of it? Believe in it? Should I spend $1000 and drive an hour each way to drag my son to yet another evaluation to find out if he has this visual processing problem that will require him to wear unusual looking filters on his glasses and potentially help him see/read/process/visualize better? Very tempting...

Goodnights: When do you encourage kids to try sleeping through the night without them? Peaches, NT, will be 4 in March, and it's tempting. Roo, with autism, is 5 1/2 and I'm guessing not ready for a long while... but I don't want to add to the problem.

Melatonin: Bad to use it every night forever? I mean, yeah, I know it is, I think. But. Well. You know. Can I? I mean... talk to me.

Forgive the greedy cries for help. Only if you have a sec. Oh, yeah, it's Christmas and New Year's and you have kids of your own... forget I asked...Love you anyway. Kiss kiss.

Food

We don't eat fast food at our house, but sometimes I wish we could.
Oh, I don't want the grease and the carbs and the junk. I've never big a drivethru kinda chick. Just that word, "fast" seems so delicious sometimes. I miss fast. Everything about our eating at Casa del Rooster seems slow since we went GFCF, and not just slow, but tedious, dull, and unfulfilling. If it can't be tastier, I wish it could at least be quicker and painless.

I am glad we went GFCF, because I know when my son is on the diet, he has fewer complaints of stomach pain, more comfortable digestion, and, according to our documentation, better focus and behavior. But I am not good at GFCF, because I am not a natural cook, and the half dozen things I learned to cook well before we had kids don't translate into things my boy can eat, so my grocery budget has quadrupled as I try to make up for my lacking skills by buying from Applegate Farms, So Delicious, Energy, Amy's, Ian's, Pamela's, etc.

At my house we now eat separate, kind of pathetic, uninspired meals. Oh, most of us eat quite healthy food, and I feel a surge of joy when I give my kids nutritious meals that they enjoy. But it takes about forever. It takes four grocery stores, orders from Amazon, 25 mile drives to a specialty bakery, time spent scouring gfcf blogs, sneaking off if the rest of us want to enjoy some delicious gluten the boy will covet... food has lost its joy in a lot of ways, and at Hanukah and Christmas, I find myself a little bummed about it.

Yeah, all you great cooks out there? Especially you soulful food writers at (Never) Too Many Cooks? You put me to shame. I want to be more like you, but it ain't going to happen. I love to read about your delicious creations, but as a voyeur. My chef's hat is off to you, and I sincerely hope your families appreciate you.

Feeling a little homesick as the holidays approach and my East Coast relatives hunker down to watch the snow fall, I especially long for the comfort foods of my upbringing. They will not by on our table this year. But I wanted to share them with you, and maybe they will inspire you. Don't worry about how they sound, trust me about how they taste. They are perfectly satisfying, and they taste like love. Make them if you get the chance. Would I lead you astray? No, I can assure you I would not.

"Candied Sweet Potatoes"
(No, you have never had anything like this, I promise - recipe from faulty memory, handed down through generations, and my family doesn't measure)
Bake several big fat sweet potatoes on cookie sheets lined with foil until the smell fills your house and you can hardly stand it you're so hungry, then hull them out of their scalding skins into a bowl of butter, and lots of it. (I have a special pair of potholders for this very purpose, used only in November and December each year for Thanksgiving and Christmas.) Stir in 1 or 2 jars of Marshmallow Whip (those wonderful glass jars filled to their blue lids with jetpuffed marshmallowy goodness and heart clogging corn syrup). Add a few dashes of vanilla and plenty of brown sugar. Fold in coconut. Yes, just what I said, you can thank me later. Grease a baking dish (I use 11x17), and spread your heavy sweet potato mash into the dish. Heavily sprinkle brown sugar all over the top, and then another sweet sprinkle of coconut. Bake it again.
Share with people who will go back for fifths, sixths, and blame you for it a week later when they cannot zip their pants. You will still be smiling.

Blueberry Cream Pie
Preheat to 400
Mix together about a cup of sour cream (lite is fine), a couple tablespoons of flour, about a cup of sugar, and a beaten egg.
Fold in blueberries (pint to pint and a half)
Pour into a pie crust (I like graham cracker best)
Bake 25 minutes, while making topping
topping: 3 TB flour, 2 TB butter, 1/4 cup chopped pecans
Sprinkle topping on pie and bake 10 more minutes
Chill - should be eaten COLD.
I have TMJ, and when my grandma made this pie for me, it always caused me to smile too wide, so that when I chewed and smiled like that, my jaw ached. What a fool I looked like, grinning ridiculously, stuffing my face, holding my jaw, eyes watering in pain and ecstasy! Holy cow how I miss that.


Ho ho ho!
Bon appetite.

With Your Own Two Hands

In my last post, I had these aching need to know how people would complete the sentence, "I thought autism..."

Not sure why I had to know, but I appreciate those of you who replied. Turns out we all thought the same things about autism. Turns out we were pretty much wrong, and mostly that is a good thing.

Now I have another question for you. See, lately my kids have wanted to hear Jack Johnson singing With My Own Two Hands pretty often, and I've come to think of it as my Rooster Calls song, in a way my autism theme song. (It's not really as much about us, or about me, but it's more about you, about the autism community. You change the human race, and you tell me I can, too, but you remind me that though you can hold and comfort the Rooster clan, that we need to use our own two hands, too.)

And I wondered: does anyone else have a song like that? Do you?

If you do, can you comment and tell me what it is? Do you have a theme song?

Here is ours:

by Ben Harper

Now I can change the world
With my own two hands
Make it a better place
With my own two hands
Make it a kinder place
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
Now I could make peace on earth
With my own two hands
And I could clean up the earth
With my own two hands
And I can reach out to you
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
I'm gonna make it a brighter place
With my own two hands
I'm gonna make it a safer place
With my own two hands
I'm gonna help the human race
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
Now I could hold you
With my own two hands
And I can comfort you
With my own two hands
But you got to, got to use
Use your own two hands
Use your own, use your own two hands
Use your own, use your own two hands
Oh, you got to use your own two hands
With our own, with our own two hands
With our own, with our own two hands
With our own, with our own two hands

I Thought...

Please.
Complete the sentence?

"I thought autism..."

This sentence starter plagued me while I slept. I woke up not knowing why, but needing to ask people to finish the sentence. Will you?

You thought autism...

?

Notable and Quotable Twelve

First, a big thank you. Those who comment here are so appreciated. (Kristen, Touch Math is really seeming just right for us, btw, and I owe you big.) Second, an apology that I'm not commenting more lately on blogs I follow. I'm sending good thoughts reading every word... on my phone, though, where it's harder to comment. I am treading water over here, as I know you can relate, but my resolution for 2010 is to be a better commenter.

I'm listening to Lyle Lovett right now, wishing I had a pony and a boat. Time for a new Notable and Quotable!

Peaches: Well, I'll go SEE Santa. I'll tell him what I want for Christmas. But I don't want him to touch me. And I AM NOT sitting on his lap!

*

Peaches: I don't like firemen. They are mean. When you do something wrong, they fire you.

*

Rooster: Mommy, please can we go to Christmas now? I want my presents.

Lemon Aid

Today was our first parent teacher conference since the Rooster started kindergarten, and I'm determined to make some lemonade.

Lemons: The Roo is not making any measurable progress in math. We understand that he struggles visually (poor kid likely had double vision until he was 3 and had eye surgery) and spatially, and that math uses the same part of your brain that relies on those visual/spatial skills. We also know that the lemon doesn't far fall from the tree, because Roo's parents are writers for many reasons, including math avoidance. On the other hand, we also know that, for all his pragmatic and conversational challenges and his mitigated echolalia, our boy does have a lot of verbal skills. He has a gargantuan vocabulary, was born with a book in his hands, and his ADHD virtually vanishes for as long as you sit down and read to him. Therefore...

Lemonade Recipe: We are going to squeeze math into every activity we can for the foreseeable future. But we're going to do it with a spoon full of sugar. Nope, we are not signing up for Kumon or tutors, we aren't buying flash cards or drill and kill software. I'm going to approach it from the Rooster's strengths and interests. Today I picked 10 library books about numbers. To Roo, who already spied them and insisted I start reading, they are books about bus rides and chicken pox, but they also have counting, evens and odds, and problem solving in their story lines. On the car ride home today when the kids wanted me to sing Jingle Bells again, I got them interested in the inchworm song instead. (Two and two are four, four and four are eight...) Our beloved ABA helper, JT, is in on it, so when he used Roo's token economy system tonight, he said things like, "It you already have two tokens, but you need 3 to get TV time, how many more tokens do you need?" I have buckets of ideas about creating math based audio stories, and some web 2.0 tools that might help me craft my own games and stories...

Like most mamas presented with a challenge facing their offspring, I'm ready to leap into action, perhaps starting off with more ideas than useful, perhaps a little more gung-ho than necessary.

But here are some of the sweetest things about the lemons on our plates right now:
1. My boy's teacher sees his biggest problem as MATH. Huh. I'm too terrified of the deities these days to tell you what I expected her to say about his many issues, but I will say this: I will gladly take MATH being his biggest challenge, if you catch my drift.
2. Literally within two minutes of wondering what math tools might best serve my son, I happened to glance at Google Reader to see that This Mom had written about the curriculum that works for her son. Stuff like that? Wow how it makes me want to drink a toast to the This Mom, the Internet, the blogosphere, and my special needs community. It didn't matter so much whether or not that math curriculum would be the right one for us, it mattered that I had a cyber friend to turn to, and a seed of an idea where to begin my search.
3. You know what? Who needs a third. Those two are sweet enough. I have some other numbers I need to go work on right now, to make lemonade for the Rooster.

Ho Ho Ho

I have mentioned it before, but it's time to say again what fantastic in-laws I have.

And I'd be grateful for them, to them, regardless, but let me tell you, being a special needs mama makes me really HUGELY appreciative to have the kind of in-laws I have.

First and foremost, they love us all. They listen. They HELP. They encourage and support. They lend a hand, they babysit, they invite us over, they serve GFCF food. Want to know what they do NOT do? They do not judge, criticize, blame, or hurt. Wow, I am just as grateful for all of that as I am for what they do.

We spent Thanksgiving with J's parents, and I had a serious cough, laying me kind of low. They made me feel better, in more ways than I can tell you.

And now, guess what? J has arranged our gift to each other, and between Christmas and New Year's we're spending a night or two in a hotel near his folks' home, while they watch our kids. Of course, it's my in-laws who are really giving us this amazing and generous gift, because no fortune in the world could make it possible without them, and it's a gift no one else in the whole world could give. There is no one else who has ever, let alone who could, who would, who we would want to, keep my two beautiful, darling, sweet, funny, smart, unique, quarrelsome, impulsive, high-energy, demanding, emotional, needy, diet-restricted, Good-Night wearing, sleep disturbed, early rising, rambunctious children. Heck, half the time I don't feel qualified to watch them myself.

Of course, I must not look too forward to the holidays, because that is something those pesky deities frown upon mightily, but no matter what happens, I know that my husband's parents are two of the best gifts he ever gave me.