Future Present

Len took Ariel and Noah to the aquarium this weekend where, among other things, they saw a group of severely developmentally disabled adults. Ariel asked Len if Noah would ever live away from home like those people do, in a group home. Len told Ariel that as long as he's alive, that will never happen. At which point Ariel turned to Len and said, "As long as I'm alive that won't happen either."

Yo-Yo Yo.

My mom days are exhilarating, exhausting and infuriating. Sometimes, all in the space of 5 or 10 minutes! Today so far has been a good day. I took Noah to school for early morning swimming. Coach Hugo was as welcoming to me and Noah this week as he was to Len and Noah last week. It's good for Noah. He swam some laps, but then spent some time jumping off the side of the pool into the deep end. And I remember when, not so long ago, going underwater was not an option for Noah. Change can be such a beautiful thing...

And Ariel was off to school for a student government meeting. The 10,000th child to receive help from Gift of Life was coming to speak with the government reps. And to top it off, it's Halloween. So my proud, politically engaged daughter put on her Chelsea soccer jersey and went off to school. She was too late to impress Sam with her jersey, but it's sweet that she even wanted to.

And yesterday, when I went to the book fair to buy the book Ariel wanted but didn't have enough money for, I managed to chat with a bunch of folks, all of whom had upbeat things to say. How great for me to hear, and how much better for Ariel.

That reminds me that as I was leaving the middle school this morning, I caught up with Mrs. L, the special ed. teacher in science. She didn't know that we'll be moving Noah next week to a self-contained science class. "I'll miss him," she said. And if I didn't know better, I'd swear I saw tears in her eyes. What can be said about a child like Noah who can't really learn the material, no matter how much Mrs. L modifies it, has only been in her life for about six weeks, and yet has made such an impression?

As for Sam, he awoke from his intense, post-school nap yesterday to mumble at me, "I made All-County." "Good for you Sam," I said. And I think for the first time, he appreciates this kind of recognition, though it's not the first time he's received it.

Who knows what the weekend will bring, but it's a gift to have these good moments. I can't forget that this is the same week in which I told Ariel I wanted to kill her, and that other parents beat their children for less. I'm human. I lose it. She knows it. That's why she's the same child who can go off to school in the morning claiming to be an unhappy child with a terrible life, and sing herself to sleep at night. Yo-Yo indeed...

How Low Can We Go

Is there a bottom to Noah's lack of comprehension? I think there must be, but we always seem to find some lower point. I've sat with him the past two nights as he/we did his homework. One part has been English, specifically, answering questions related to the Winn-Dixie book. I've known this child all my life. I know how disabled he is. And yet something about his utter lack of understanding of anything I read to him shocked me. I don't know why. It shouldn't have, I suppose. But maybe we've gotten so many glowing reports about Noah and how much everyone who works with him loves him, and how well he's done adapting to this or that, that I've forgotten how little he can really do in some respects.

Do I care that Noah doesn't understand this story I've been reading to him? No, not really. But I do want him to understand more and more, to make his adapting to the world as he gets older more likely. And he has made enormous strides; they just tend to have nothing to do with the average academic day.

I get sad about Noah. I feel heartbroken at times. I worry about his future every moment of every day, or so it feels to me. I know the school stuff matters little to him, and that he has in common with his siblings. But I wonder what can replace Winn-Dixie, and make his student day job more productive, more engaging, more useful to and joyous for him.

Or maybe I just no longer want to feel bad about doing homework.

Of Math Homework and Madness

I'm really, truly, unabashedly starting to HATE modern parenting. I separate this quite emphatically from how I feel about my kids, whom I adore. What I despise are the incessant demands placed on parents by schools. Idiotic, pointless, test-prep homework. Endless flyers--among which, irony of ironies--are many promoting the virtues of going green. Requests for donations of money, school supplies, time. Reminders to collect for UNICEF during Halloween. Your child's in this special intervention program, sign here. Tell us what you think your autistic child should be when he grows up. Fill in this form. Will he go to college? How about a sheltered workshop? How should I know!??!?!!? He's twelve years old!!! Shouldn't you geniuses who claim to be responsible for educating him be helping us to figure that out. He wants to be a pilot. How about I put that on the form? Then you get him in to flight school.

There's just all this busy work. Forms, flyers, requests, demands. And what difference does it all make? Our education system is so flawed. Even here in the affluent environs of Long Island. Sure, there are kids who get awards, but so what in the end. Trophies and certificates are great at gathering dust, just like some of our dreams.

So what difference does all this make to my kids? They go to school. They do their worksheets. But what they really want is parents who love them, a chance to romp in the grass, commune with nature, listen to and play music, make art, design new worlds, reads some imagination-sparking books once in a while, and snuggle with mom before bed. If I stopped sending them to school tomorrow, would it make much of a difference to who they are as people, to how wise they become? I know the answer is "no." I know that because my father's formal education ended in the equivalent of middle school, with the outbreak of World War II. He didn't finish school, but he'll always be the wisest man I've ever known. He never took an ELA. He didn't take AP classes. He didn't take the SAT. He missed out on the chance to spend half of fifth grade prepping for a single social studies test. Poor Papa. He got his wisdom the old-fashioned way. He lived in the world and learned from it. He spoke five languages. My children speak one, as do I. Far as I can tell, the schools count beans and test scores well, but do they count what matters? Do they even know what that is?

I often think I'm not much of a parent. I chafe at the routine of it. I don't care about what the schools care about. I've never liked dotting i's and crossing t's. I care about excellence, but not about excellent forms. I care about high standards, but not about test scores. One of my children is bored but will get through fine. The other is disabled, and running interference for him seems to be my life's work. My youngest is a square peg, if ever there was one, trying to fit into a round hole. School will kill her, if it doesn't kill me first. She will butt heads with almost everything about it. She will despise the restrictions, the boredom, the tedium, and her teachers will return the favor about how they feel about her. She will ask "too many" questions. She won't accept or like the few answers she gets. Her grades will reflect that. But on the bright side, if the world implodes between now and then, none of that will matter. We will all be brought down by the hubris of some. We will revert to our savage state, killing each other for crumbs. Finally, something will trump the need to score a perfect 2400 on the SAT, at least here on the North Shore.

Politics & Parenting

Perhaps I've got my priorities ass-backwards, but I spent a good part of this Sunday afternoon on the phone calling voters in Pa. To my near utter astonishment, I had a lengthy chat with a lovely woman who, admitting that on policy issues, she's 75% in Obama's corner, also admitted that in her gut, she essentially views him as a terrorist "sleeper cell." Holy shit! Amazing stuff. But I stayed calm (my brain had to have been spinning off my head, really, into outer space, but my voice didn't betray anything).

I sounded curious, understanding, concerned. As with others I'd spoken to in Pa., I pulled out everthing. Yes, I could understand her fears; my sister-in-law survived both attacks on the World Trade Center. But Barack only lived in Indonesia as a child, a choice that was made by his mother, not by him. And Indonesia has historically (if not in the last few years), been one of the most moderate Muslim countries on earth. And would it be fair to accuse you of being a Mafia princess if you spent some of your youth in Italy? And you have children, don't you? Well, don't you want to vote for their future, rather than succumb to the fear-mongering that has dominated our politics these last eight years and led to all kinds of abuses in the name of fighting terrorism? If you agree with Obama on policy, can't you make that the reason for pulling the lever? Can you see that a weakened and fearful America has given victory to the terrorists without their having to attack us here again? Don't you want to feel hopeful? When you go into the voting booth, you will be pulling the lever for your children, who aren't yet able to do it for themselves. I hope you'll vote for their future, that you'll vote for hopefulness and for the chance for America to be a great country again. And please do talk to your husband again. Since he thinks that everything that could've been "outed" about Obama already has been, listen to him. He sounds like a wise and insightful man. It would be awfully hard to be a secret terrorist with so many people looking at your every move for months and months. And he's surrounded by hundreds of people advising and working with him. It seems so unlikely that all those smart, dedicated people could be fooled by him. And remember, he spent a few years in Indonesia, but his formative and adult years here. I want you to feel good about the vote you cast; if you're concerned about health care and the economy, think about those things and try to set aside the fearful side that you say isn't even based on any specific example or incident. Cast an affirmative vote. Cast a vote for your children, for their future.

Shoot me now. She was lovely, but geez, how do people believe this shit? And then contemplate voting on it. And she wasn't even the person I was trying to reach. She was that person's sister. So I don't even get credit for the f...ing call!!! But maybe I screwed her head back on right and got her to listen to her husband, and to cast a vote in November for Obama. I'll just have to hope, since I'l never know.

But then there was an even longer call with a lovely older woman (65), who admitted to being undecided, but also had clear disdain for Bush and company. Her hesitation seemed to have a lot to do with Obama's "making it all sound too easy." I started by drawing her out, and heard about how she and her husband are middle class, and that each has at times held more than one job. They helped a daughter through college. That daughter was in ROTC and served in Desert Storm, and then went on to earn a PhD. A son essentially put himself through college.

I'm too tired to go through much of our conversation. Suffice it to say that at the end, she said to me, "you can feel good about this call." "So can I count on your vote for Obama?" "Yes, you can." Mission accomplished.

I'm so glad I've done this calling, but none of it makes me feel better about Obama's prospects, because I see how hard it is to convince people, and how much time it takes. The older woman, Anita Z., even thanked me for answering her questions and giving her so much information, because up til now, she'd had no one to ask and no way to get her answers. There have to be so many other people who feel as she does. There just isn't time left to reach them with this kind of detail. I just have to hope that folks can cut through the nonsense. But having a perfectly rational sounding woman essentially tell me that she considers Obama a one-man terror network makes me realize what an uphill climb this is, in spite of all the rosy polls. Where the rubber hits the road, there are some crazy ass skid marks.

Micromanaging Me...

So I generally pride myself on taking a hands-off approach to my older son's education, only stepping in to have a conversation with school personnel to say "thank you," to ask a question about scheduling, e.g., for orchestra concerts, or if he really leaves me in the dark about something I need to know. Oh yes, there was that one teacher who made flippant remarks to the students about guns, and that led to a call to "headquarters," so to speak.

With my daughter, it's been a mixed bag of hands off, and now and again all hands on deck. We can track the intensity of our involvement to the intensity of her needs/acting out. With Noah, it's just always all hands on deck. Not in a bad way. Frankly, the micromanaging we've done with Noah is the good kind, if you can believe there is such a thing. Since second grade, it's been about working closely with a team of dedicated and caring professionals to help Noah succeed. They have been incredible to/with us, and I hope they've appreciated us as parents.

Middle school is new terrain for us, but in the less than two weeks that Noah's been there, I've had phone and/or email contact with: the principal, the assistant principal, his aide, the special ed. teacher in the science classroom, the guidance counselor, one of his two speech therapists, the school psychologist, and the head of special ed. And we have yet to have open school night!!

I'm a bit overwhelmed by it all, because I have yet to put faces to most of these folks. What's been lovely is that they've generally been the ones to contact us, and that's very encouraging. But it's not entirely clear to me how all the pieces fit together. Partly that's a result of the fragmented nature of middle school; partly it's a result of the fact that Noah's partially mainstreamed.

In spite of all the years of dealing with this, I'm still not used to it. And elementary school is downright quaint compared with middle school. It's smaller, for one thing, and there's only one academic teacher to keep track of. Things break wide open in middle school. And since my child can't really tell me anything about his school experiences, I'm truly dependent on the good will and information I get from a whole group of people I have yet to get to know. Some days, I just feel like I'm too old and tired to keep starting over, but I don't really have any other choice.

Tears and Fears

Funny how I wrote this lengthy blog entry only yesterday about Noah's summer, about all the new things he did, and all the triumphs he had. Last night, my sweet, lost little 12 year old boy cried in his bed as I snuggled with him. "What's wrong, Noah?" I asked. "I don't want to go to school." "But why?" His reply, "It's scared." "Noah, is school scary? Why?" And after some effort to draw him out, Noah said, "it's loud." "Noah, why don't you want to go to school? Because?" "It's loud and scary," he finally told me. This through his sniffles and tears, and while hugging his Lambchop puppet.

Do we kid ourselves when he goes to school without fuss, and doesn't seem to raise one while there? Is he working overtime to hold it together for us, and then just can't anymore? I cannot tell you the heartbreak of hearing this child of mine cry. He just seems so lost sometimes, working so hard to fit into our world, and then cracking a bit under all that pressure.

I wish he could tell us more. I wish he didn't seem so vulnerable. I wish I could go with him to school, smoothing over any rough spots, and making all better, like moms are supposed to do. And it's not that caring, effort-filled people aren't looking out for Noah during the day; they're just not mom.

All part of the journey, I suppose, but that doesn't take anything away from the pain and heartache of seeing Noah struggle, of wiping away his tears, of knowing how hard he works and how tired he gets. I cannot make Noah's fears disappear, any more than I can make my own vanish. Perhaps the best I can do is help wipe away the tears and let him know that mommy loves him.

Last Gasp of Summer

Well, summer's not officially over, but once school starts, for all practical purposes, it seems to be. Noah's in middle school now, which I'll get to in a bit, but I can't bear to lose the strands of summer just yet, so let me recap.

Noah split his summer, with mornings in classes at one of our middle schools, and afternoons in the recreation program at one of our high schools. I wasn't sure how Noah would handle three hours of morning classes, but he came through just fine. He took cooking, sculpture and computer art, and I was thrilled when I got notes telling me how much he enjoyed making certain foods, and how many of them he tasted--including chocolate cream pie! The computer teacher seemed so taken with Noah that she made a copy of one of his artworks (a drawing of a computer, actually) to put in her office at school during the year, to cheer her up when she's having a tough day. Those stories mean the world to me. It's Noah spreading his magic yet again.

In the afternoon, Noah swam, did gymnastics now and again, participated in arts and crafts and computers, and generally seemed to do well. But it's when he transitioned to our town's outdoor camp program that he really impressed us. Noah went sailing!! Noah played tennis!! Noah continued to jump off the diving board at the town pool. One of the counselors at this camp commented on the changes in Noah compared with last year. Any parent of an autistic child will tell you that hearing about (positive) progress, especially when the comments are unsolicited, is more than music to our ears. It's what we live for.

We followed camp with a family trip. Noah loves the Berkshires, and off we went for four days. He loves to go walking on the rocks in the brook near the house we stay at. This year, for the first time, we let Noah and Ariel go down by themselves. We could hear them from the porch and see them, up to a point, but they were on their own. It's wonderful to give them that kind of freedom just to be kids.

We even pushed the envelope a bit, taking the kids to an outdoor reading of Shakespearean monologues by a group of teens at Shakespeare & Co. in Lenox. Noah sat fairly well for most of the time, but since it was in a tent, coming and going a bit wasn't an issue. And you could have knocked me over with a feather when Noah last 4.5 hours!! at MassMOCA, where he participated in an art-making scavenger hunt for half the time. And he and Ariel loved a Jenny Holzer installation in a giant, dark, hangar-like space which had words projected on the walls and gigantic beanbags on the floor. Len's always apprehensive when we try things like this, but my feeling is that we've got nothing to lose. Either they'll work well, or they won't.

Niagra Falls and Toronto were fine too. The highlight there for me was watching Ariel take Noah under her wing in swimming, trying to teach him stroking and kicking. Not sure how successful she was with that, but he was a willing student. Best part of all was watching them hold hands and jump into the hotel pool together. Sheer joy!

Wonder of Wonders

My son, who for so long could not bear to get his face or hair wet in a pool, jumped off the diving board at our town pool last week, on Wednesday, August 6th, to be precise, sometime after 6p.m. After watching other kids on the diving board, Noah asked if he could jump too. I said that he could. So Noah waited his turn on line, climbed the ladder, walked out to the end of the diving board, and then said, "It's too high." So I told Noah to climb back down. And he did.

A minute or so later, Noah asked if he could go again. I said that he could, but that this time, he had to jump. AND HE DID!! I cannot begin to describe the blended look of joy, pride and triumph that erupted on Noah's face. I don't think I've ever seen anything like it before. And once the deed was done, there was no stopping Noah. He jumped again and again, until the pool closed at 7p.m. It was simply magical. I'm so proud of him I could scream. And more than that, I am positively in awe of a child who finds ways to overcome so much, including his own discomforts and fears, and in the process risks more, learns more and does more than I could ever hope to in ten lifetimes.

Clothes Downstairs

So appreciative of feedback/comments. A writer on the last post asked if it isn't possible to bring the clothes downstairs, especially since that's where the bathroom is. Her child's on the spectrum. So is my son. All I'd say about that is that normally, we all get dressed in our bedrooms. Really important, I think, to try to reinforce that for all kids. It can be a process that evolves over time, but I think we need to teach our kids what "normal" habits look and feel like. So for that reason and others, I'd try to get my child to dress in his room, brush his teeth and wash his face in the bathroom, and come downstairs. If the only available bathroom is on a floor other than where the bedroom is, that's another story. But if they're on the same floor, then tackle all those tasks where they should be tackled, then settle in for breakfast.

Problem Solved!!

How great was it to host my parents' group and have us actually tackle a problem we all thought we could solve. We were a smallish group--five in all--but we were productive. We offered help to one mom who is struggling with diagnostic and behavioral issues. We tossed out ideas and recommendations, and we certainly tried to be helpful, but who knows...
But then another mom was discussing the challenges of getting through the morning routine. Through some probing, we discovered that the routine included everyone coming downstairs in their jammies to have breakfast, en famille. "Oh no!" we practically cried in unison. "No coming downstairs until dressed, brushed and washed." I can't even imagine the backlog of trouble we'd have with getting ready in our house if the kids came downstairs, had breakfast, and then had to go back up to get dressed and cleaned up. Buses would come and go on a regular basis, without my kids on them.
I'm dying to know if our solution works. It seems so straightforward, so right. Let's see how the execution goes. But how great a feeling to be able to help another parent with a problem like that. Daily stress and worry, possibly reversed for good with the slight tweaking of a morning routine. Hoorah!!

Wonder of Wonders

Yesterday was a breakthrough day. We were at our town pool, and as has often happened in the past, Noah watched kids jumping off the diving board. This time though, he asked if he could do it too. I said "yes" and Noah walked over and got on line. He climbed the short ladder and walked out to the end of the diving board. He looked down into the pool and said, "It's too high." So I told Noah to climb back down, and he did. But a minute later, he asked if he could go again. "Yes you can," I told him, "but you have to jump off this time." And he did.

What a joyous, wonderful, amazing experience for Noah, and for us. I don't think I'd ever seen true glee, not until I saw it on Noah's face. The pride, the happiness. If they'd been written in words, they would have been bigger than anything earthbound. And once Noah jumped, he just kept going, getting back on line and jumping again and again. Here was this child, who for so long has avoided putting his head in the water, jumping into a pool twelve feet deep, with no option but to go under water, and no way out of the pool other than swimming to a ladder on the side. And I thought the laps Noah's been swimming for an hour at a time this summer were a breakthrough. Noah teaches me, every day, never to measure expectation by limitation.

Make You Laugh/Make You Cry

I could stop with the title above, say nothing else, and every special needs parent in the world--especially the moms--would know exactly what I mean. But here I have something very specific in mind. My son Noah graduated from elementary school in June of this year. Each child had to share his or her "words of wisdom" with the audience. Noah walked through the cardboard archway on the stage, emblazoned with "2008" and boldly said into the microphone, "I think I can. I think I can. I think I can. The Little Engine that Could." Meaning no disrespect to the other parents there, my ears heard the loudest applause for Noah's "words of wisdom." As he always does when he's on stage, he took a bow, then walked to the left of the stage, to get his diploma from the principal. Then he exited the stage and walked back to his seat, collecting congratulations and Hi-5s from his classmates.

If ever there were a motto for special needs kids and parents, "I think I can" fits the bill. It's what we tell ourselves when we can't do any more, but know we must. It's what we hope our children are telling themselves when they tackle the everyday tasks that for many of them are like climbing Mt. Everest. It's all wrapped up in that one little phrase. When Noah proudly spoke those words, I cried. Tears of joy, tears of heartache, tears of laughter. All the things Noah means to us. But at that moment, it was all good. He had climbed a mountain, and planted his flag at the top. I think I can indeed...

Sharing Ideas

I think I've proven my technological idiocy by suggesting in my inaugural email that you all could post things on this blog. I think you can only comment. So please do, and suggest things you'd like others to know about/ask about, and I will then turn them into postings for others to read. No confidences will be violated. But if someone wants advice/guidance about something, for example, I can put it out there in a posting. In the meantime, I'll try to figure out if I'm wrong about anyone but me posting stuff.

Expect the Unexpected

Sometimes it's downright funny. You think the challenges will come from the "special" child, but instead they come from another child, the one without a diagnosis. In our family, our easiest child is our autistic son. Maybe that's because we've worked so hard on him. We've focused so intensely on managing his behavior, on making him less of an outsider, on his social skills, etc. I often say that he's the only one of my kids who cleans up after himself, always says "please" and "thank you" and even empties the dishwasher and helps prepare meals.

A Little Forgiveness Goes a Long Way...

I heard something wonderful at a recent parent support group. That was one mother telling another, who seemed to be beating up on herself a bit for not having had certain successes with her child, that we need to learn to be more forgiving of ourselves. So obvious, but so important. We want to get it right, dot all the i's, cross all the t's, but kids aren't like that, and kids with special needs most especially aren't like that. We'll never stop working to help them, but sometimes we have just to accept that we do the best we can. And that is perhaps all we really can ask of ourselves.

Getting Started

From one parent of a special needs child (and other typical children) to others. We can chat by phone, or meet in person, but here's a way to stay connected during those intervening days/weeks/months. Comment as you wish. Share thoughts, struggles, successes, etc. But please be respectful. Be helpful. Be generous in not judging. This parent jungle is a hard place to be. It's filled with mystery, with unexplained phenomena, with danger, and with wonder. All of this is what we likely encounter in trying to raise our kids. Let's learn from and with one another.

Invite your friends to this blog. Invite them to be part of this community. My child has autism. Yours might not. It doesn't matter. We're all trying to do the best we can. Let's help one another succeed. Let's prop each other up on the days when keeping going can seem just too hard to do. And pat each other on the back for the many, many instances of a job well done. And a day gotten through with a smile, from start to finish...