For parents of special needs kids, a place and a space in which to share the struggles, the joys, the heartaches, the heartbreaks, the triumphs and tribulations of raising extraordinary kids. What works, what doesn't. What holds us and our families together; what threatens to tear us apart. Support, trust, friendship. This is what we promise to each other.
Friday, May 25, 2012
Not Even 24 Hours
Len and I were on the tarmac at JFK, having just landed, when the call came. It was Ariel, desperately trying to convince her dad that she should be allowed to skip her Hebrew School graduation. I had said to Len hours before that I hoped we could find a way to sustain the feeling of calm and relaxation that washed over us during our parents-only getaway. We didn't even make it home before typical aggravations reached us.
Things got worse the following evening, with Len unleashing his fury at Ariel for not cooperating when he asked her to practice trope with him before doing her French homework. In a typical bit of stubborn power-playing, Ariel refused, then lied, and Len just exploded. I understand why he did, but it was a miserable, regrettable turn of events. And for some reason, I was on the receiving end of the next morning's hate mail by text from my daughter.
I felt so sad and deflated, so defeated and incapable. How could two parents, who love their children as much as we love ours, wind up in this situation, cornered like dogs by repeating patterns of behavior and response? Are we just too stupid to figure out how to parent? Are we too weak and too easily outsmarted?
Len seemed to think I was angry with him; I was not. I am just too tired for this conflict, whether it's him with her, she and I, or some other combination. I just want what my friend Misha talks of, Shalom Bayit.
Friday, May 11, 2012
Bed Bunnies
I was recently exchanging opinions with a friend about breast feeding. This was in response to a recent magazine cover of a mom whose 3 year old son is shown standing--and nursing--at her breast. I am an advocate of breast feeding, and breast fed all of my kids for as long as they were interested (about a year). I think I would have cut them off if it went much beyond that, because it gets painful when they have teeth, and it's just a little weird, I think, when they can ask for it. But that's my personal opinion, and I've no quarrel with a woman who chooses to breast feed forever.
I thought about this as I snuggled this morning with my 16 year old son. That's our ritual, both before he goes into his own bed at night, and before he goes to school in the morning. There's nothing remotely sexual about this; he just loves--and needs--to snuggle. It's such a precious few minutes of warmth and close calm for him and me that I wouldn't give it up for anything. But I wonder, would viewers of a photo of us snuggling impute nefarious motives to him, or to me? It's heartbreaking to think so, but such is our world of judgment and sexualization.
When we couldn't get our kids out of our bed years ago, I prevailed upon my husband to get a bigger bed. King size, it is. And my happiest moments are when it's a family bed, when my eldest comes in to watch a movie with us, when my youngest brings her bellyache to be soothed with snuggling and bad tv, and of course when my middle man comes for his dose of snuggle love.
So to the moms who want to breast feed forever, if it works for you, go for it. I can think it's weird or painful, but you can think the same of my snuggling with a sixteen year old. I've no business trampling on your pleasure and intimacy, nor you on mine. And we certainly have it over men here, don't we? They'll never know what they've been missing out on...
Wednesday, May 9, 2012
Colorado Dreaming
So at Starbuck's this evening, we were chatting with Noah. Len told Noah that he would take him skiing next winter and asked where he would like to go. Noah's answer came back as expected: "Colorado." I then asked Noah if we would need to look for a ski program for autistic kids. "No." "Are you autistic, Noah?" "No." "What are you?" "Just good."
Yup, that about sums it up.
Friday, May 4, 2012
The Gift That Keeps On Giving
Noah brought home his My Book About Me this week. As I read through it I thought, "This is not your typical teenager's self-assessment. No, it's far more amazing and wonderful than that." Much in the book was familiar, but lovely still. Favorite color: blue. Favorite food: chicken. Favorite song: Jellyman Kelly. I did learn that Noah's favorite place to be is a restaurant. I would have thought the Museum of Natural History or the zoo.
What does Noah's name mean: Nice Obedient Able Hopeful. I melted over that, though I paused a bit when I got to obedient. It's true, for the most part, but it also worries me. Will Noah know when in life to stand up for himself, when it's necessary--or even urgent--not to be obedient? God I hope so.
If Noah could be an ice cream flavor, he would be chocolate. He would be Oscar, if he could be any cartoon character. His superpower would be the ability to fly, which meshes perfectly with his desire to be a pilot when he grows up. And here is Noah in a nutshell: If I won the lottery, I would Share.
Noah is special because he likes to dance, read books, and eat apples and oranges. Flowers make him happy. He's scared of the rain. And tickle makes him laugh. He wants to travel to Colorado.
I've always believed that the greatest power lies in simplicity. Most of us spend way too much time turning molehills into mountains. Here's a child--a young man, actually--who turns great adversity into simple truth and beauty. There is something spectacular and miraculous in that. I feel so privileged to be able to learn from this incredibly-abled teacher. I just hope that he considers me a worthy student. Flowers, sharing and flying. Indeed.
What does Noah's name mean: Nice Obedient Able Hopeful. I melted over that, though I paused a bit when I got to obedient. It's true, for the most part, but it also worries me. Will Noah know when in life to stand up for himself, when it's necessary--or even urgent--not to be obedient? God I hope so.
If Noah could be an ice cream flavor, he would be chocolate. He would be Oscar, if he could be any cartoon character. His superpower would be the ability to fly, which meshes perfectly with his desire to be a pilot when he grows up. And here is Noah in a nutshell: If I won the lottery, I would Share.
Noah is special because he likes to dance, read books, and eat apples and oranges. Flowers make him happy. He's scared of the rain. And tickle makes him laugh. He wants to travel to Colorado.
I've always believed that the greatest power lies in simplicity. Most of us spend way too much time turning molehills into mountains. Here's a child--a young man, actually--who turns great adversity into simple truth and beauty. There is something spectacular and miraculous in that. I feel so privileged to be able to learn from this incredibly-abled teacher. I just hope that he considers me a worthy student. Flowers, sharing and flying. Indeed.
Thursday, May 3, 2012
Feeling Failing
I sent my eldest son a text yesterday, telling him that we have something new in common: I had a crummy job interview too. He'd complained to me back in March that he thought he did poorly in a job interview and I told him at the time that everyone feels that way at least some of the time, that I am a lot older and have felt that way too. Little did I know that a month and change later, I would be having one of those crummy interview experiences. But what was charming and lovely was Sam's response to my text message: "Awwww Mommy, I'm sorry."
Love and life are certainly reciprocal experiences, only meaningful when shared in relationship to others. As a parent, it feels like I always have to be the strong one, the tree to be leaned against. Sometimes though, I feel like the bent branch. I hesitate to show that vulnerability to my kids, but then I think that they need to see it, to know that strength is not only found in steely stoicism. One of the most enduring memories I have of my father is seeing him cry. Even then, I knew it took a unique strength for a man to cry, and a superhuman strength for him to do it in front of his children. In that circle of life and memory way that I live, one of the times I regularly show my vulnerability is when I go to the cemetery. Sam and I have gone together on several occasions, and I always tell him, through my tears, how much I hate that place, how I cannot stand that this is where my father--his grandfather--is. I don't want to pretend a reverence for that place that I don't feel. I hate that the cemetery is in an ugly urban neighborhood, that the people who live near it have no feeling for the people buried there. I want my kids to know that it's ok to push against convention, to say out loud what other people might only whisper to themselves.
In a funny way, that's exactly what parenting an autistic child teaches you. There are not just the myriad lessons about failure, but the many more lessons Noah teaches me about what real honesty looks and sounds like. He only knows how to be who he is. There is no other persona he can put on display for an interview. God, that must be liberating. Just to be. I think I come close most of the time but this week, I left some important part of me in the waiting room, or so it felt. Maybe the questions just seemed so stilted and dull that I couldn't quite connect. As my husband often says, I have no bullshit factor,
no poker face. So in those "sell yourself" moments, I am as handicapped as I can be. Ah well, such is life. Sometimes, all clicks and flows. Other times, you feel like the only person on the dance floor with no rhythm. But then the person who is supposed to lean on and look up to you reaches out and let's you know it's okay. Failing isn't the end of the world. It's just being human.
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