into the woods, living deliberately

Blessings

2011-12-25T23:55:00.000-08:00

I have been joking lately that the past decade was a 'little rough', but that the last nine months have nearly made up for it. It's not like we didn't have a whole lot of amazing, awesome things happen in the last ten years, because we did...children and new friendships and a cross-country trip, but lately it feels like things- all of those pieces are finally coming together. For as little sleep as I've had in the past few months, I feel more forward momentum again. My kids are so in-sync at school, and they are each developing into such beautiful people. My husband is happy, which always make my life happier. He loves the people he works with, and he's got plans to build tree houses. And I got an ice machine for Christmas.

That ice machine is so completely unnecessary that when I opened the box from my husband, I cried. It is just something I want, and he gave it to me just so I could be happy. We don't need it. It doesn't fix anything that's broken. It's not for the kids (though they like it too). It's for me. I like ice. I hate ice trays and I have always wanted an ice machine. The little automatic refrigerator one won't work without a $40,000 reconfiguration for the kitchen, so Descartes found one that fits into the window box behind the sink and voila: refreshing beverages.

I'm not that pleased that it was a material good that tipped me into the "feeling blessed" category, but I know that it did, and once you tumble over that line, it becomes so clear all the good that you have. I've always tried to be a thankful person, but perhaps it was just a little bit easier for me to see how my cup runneth over... once I put ice in it. And I am so thankful for all that I have, and all I have been able to do.

***

I have met so many amazing people this year, and learned so much. Thank you to all of our wonderful family and friends for warming our life.. and for understanding that our Holiday greetings just turned into a New Years card.

Fit to Print

2011-12-22T03:00:00.000-08:00

The book ... THE BOOK is now available. I am taking a break right now from building the Kindle version to mark this occasion on my own blog. We have received wonderful reviews so far, especially from Steve Silberman who has called Thinking Person's Guide to Autism the Book of the Year.
He says...

...my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person's Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

(I hope you read the rest of his article...Leo's cuteness is featured quite prominently!)

This book has been an honor to be a part of, and I can only hope that there's a story, a chapter, or even one line that helps another person navigate this life a little easier. There was nothing like this book when Jack was diagnosed more than seven years ago. I didn't know which information to trust. I didn't even know any adults with diagnosed autism. The website, the online relationships and all of the great content just amazes me.

And I have learned and grown over the last year and a half. My mind has been changed, while I have also become more confident in my own story. I have a better understanding of community, and I am learning what advocacy looks like, or should look like. My heart has softened, just as my resolve has become a bit more steely. My heart holds so many more people and all of their words.

I have always said I am a different woman, a better woman than I would have been for knowing my son. I know that I would have been a writer or an editor of something somewhere. I probably would have donated my time and skills to help others because I was raised to think that is important. But I recognize that I am only a part of this great project because of my son. All of his struggles and triumphs, and the future that lies before him in this great big world filled with malice and grace. He led me to this opportunity, and I hope he is proud of the work we have done.

Buy your copy today!

My Autism Team

2011-12-06T22:01:00.001-08:00

MyAutismTeam.com officially launched today. I'm so glad I've had the chance to meet some of the great people there. It's a good project that is already so helpful, and the more data we add, the better resource it will become for other families.

From their press release:

MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.

The site is most beneficial for parents or caretakers of people with autism. Each member shares the "team" of providers and professionals who serve the individual with autism, and other members can see the team you have created. Looking ahead to families with children who are older than Jake can help me figure out what providers we might need in the future. I know we are looking for someone to create a special needs trust in the next year, and we will probably need to look into becoming conservators when Jake is a little older. I wish I had this kind of resource when Jake was three and we were searching for OTs PTs and everything else.

Please check out the site, and provide these good people feedback www.myautismteam.com and on Twitter @MyAutismTeam

A Bicycle Built for...Someone Else

2011-11-26T04:00:00.000-08:00

The other day I was driving along, taking care only to watch my speed, and otherwise on autopilot. I was preoccupied making a list of all that I needed to do before we left for the holiday when I saw several bike riders turn onto the other side of the street. The last cyclists in line were a man and woman on a tandem bike, with a baby seat behind them.

I burst into tears.

It’s something I had forgotten; something that I used to want so badly. I wanted to ride on a tandem bike with my husband and our kid. I wanted to sail along the coast or through the grape vines of the wine country. We were going to be so fit and happy with our giggly baby cooing behind us. I had forgotten how many bikes I looked at online and those I looked at in stores while I walked around with my big pregnant belly.

Then we had Jake. Then I broke my leg. Then Jake wasn’t “meeting his milestones.” Then there was the first neurologist. Then the dog died. Then there was a job change (and another job change). Then there was OT and PT. And Jake still didn’t walk or talk, and he couldn’t sit up well on his own, (and how would he ever had ridden in that bicycle seat?) Then there was early intervention preschool and we bought a new couch. Another dog died, and there was more this therapy and that therapy, and speech therapy. We bought a mini-van. Then we had Lucy, and a few more dogs, and Jake got settled and happy in his new school, and Lucy started kindergarten.

And somewhere along the way, in the last eleven years, I forgot about the tandem bike. I forgot how important it had been and how badly I had wanted us to have “that life.” I forgot about the people I thought we would be, and the places those people would go. But watching that long bike whiz by tore something a little open in me and I had to pull over for a minute so I could get my bearings, and I could remember to be thankful.

***

I don’t have a tandem bike. I probably won’t ever have a tandem bike because it doesn’t match up with my life anymore, and really, it probably never did. I didn’t get to have “that life” – but what some people forget, as we wallow around in “what ifs”, is that no one had that life. No one did because it never existed, except in the mind of some lady in a bike shop staring at $3000 price tag.

The thing about being thankful, is that it requires you to be thankful. It’s not about begrudgingly acknowledging that “it’s not what I wanted, but it’s not so bad.” Being thankful is recognizing all of the goodness that is, (and maybe seeing the pitfalls that you dodged). Being thankful can be hard in the face of grief, or chronic pain, or financial struggle. It’s hard when your kid has a meltdown in the middle of the holiday dinner, or your spouse just can’t handle another minute with people and must retreat (leaving you to explain the absence). Being thankful might take a moment when you're just so tired, and every single thing seems so hard.

But there is good in every one of my days. I am so thankful for the life I have; for my smart, handsome husband who has turned out to be a really great dad, and for my beautiful children who surprise me every day. I love my family, and where I live, and the friends I’ve made. We have jobs, and interesting colleagues, and a house and cars that run and food in the fridge and the freezer. I have every basic need met and then some, and then some more, and I am so very thankful.

Autistics Speaking Day

2011-11-01T22:58:00.000-07:00

Today is Autistics Speaking Day, at least for a couple more hours. If you are participating, please submit your post to the official site!

Thinking Person's Guide to Autism has been participating all day today with Liz Ditz curating every post she could find, and Carol Greenburg (-CG) busy tweeting @thinkingautism :

I'm autistic, not sick, not broken, just neurologically outnumbered

--Carol Greenburg

Inappropriate laughter. Worst description of autistic behavior ever.
If you use this term consider the possibility you just don't get the joke

--Carol Greenburg

I have always been more comfortable talking than listening but I am really trying to hear what he wants to communicate.

Jack might not have a lot of words, but he does have a lot to say,
-and he always gets the joke.

Like Pebbles Through the Hourglass

2011-10-27T03:30:00.000-07:00

We're sitting here on the walkway on our hill. I'm a little more relaxed up here as long as I am between Jake and the stairs which lead to the street, where he has just gotten off the bus. It's not a yellow short bus anymore, it's a very well-used white van with a sweet driver who may or may not understand anything I say. It doesn't matter to me as long as he continues to treat my boy with the respect and care he's shown each day.

Jake's ride home from school is almost an hour, which seems like a long time, but it wouldn't be much shorter if I drove him myself. He's always been a good passenger, and it's not a bad ride through the eight or ten cities they travel. I imagine he leans his head against the window and looks at the rolling hills. Maybe he naps sometimes, but he's always loved road trips, and Descartes and I both like to drive, so perhaps it's just another way for us to know he's really our kid.

I keep asking him about Halloween. I know he practiced at school today, walking to the office in preparation of going door-to-door on Monday with a decorated bag, and someone holding his hand. I know from the journal we pass between classroom and home that he carried a push-talk button that said "Trick-or-treat." I ask him if he held the button, or did his aide carry it for him. He smiles and squints his eyes.

He just keeps laughing when I ask him what he wants his costume to be.--the costume I need to come up with in just a few days. He's probably laughing because I keep asking him open-ended questions, like he is just going to answer me. As if today he will decide, or have the ability to say clearly, "I don't want to be Luke Skywalker, I want to be Vader." It's happened before, a whole sentence clear and direct. He saves his words I think; saves them for what he thinks is really important. For every gazillion words I spill out of my mouth, he has three or four words. I guess it's not so surprising that most people look forward to his.

I let him linger in the sunlight that shimmers across his face, filtered by the leaves just enough to make me resist putting on sunblock, lest I ruin the moment. He continues his survey of our path, gathering stones and leaves and dropping them in some order I don't understand. Jake is quiet and moves a little closer to me where I have sat down and begun pulling sour grass out by the roots. I love when oxalis fills the yard in fall, but since everyone else thinks it's a weed, part of me feels compelled to rip each flower out. Then I contemplate how often I balance what I want to do against what others think I should do, and wonder how it influences my parenting and my children. I overheard Lucy saying, "You shouldn't judge a book by its cover." the other day, so I know she's hearing me a little.

The sun slides down faster than I expect it too, or else we've been outside longer than I had intended. Being with Jake in his moments is so peaceful. Aside from the crouched-down position he takes to do it, I can see how comforting it might be to sift through the pebbles and let them fall over the garden border. I love to plant bulbs and flowers, and have fond memories of my childhood at this time of year preparing the flower beds to receive more bulbs; anticipating what spring would bring.

Time is different in a garden. Sometimes it feels like I've been pulling weeds for hours, but it can be pleasantly surprising to see how much I have accomplished when no one was watching over me, when I wasn't keeping score, when I couldn't see the hands on the clock from where I stood. I can't hurry the bulbs. I can't will more perfect breezy afternoons to sit with my son on the sidewalk. I can water all I want, but sometimes I forget what I've planted where on this hard-to-manage slope in our front yard. Some years the garden is awhirl with color, and filled with fruits and vegetables. And sometimes our yard is dry, barren, waiting for the day when Descartes and I are both available at the same time to fix the sprinkler system; because some jobs just cannot be done alone.

I can see the peach fuzz on Jake's cheek when he turns towards the sun, his eyes closed as he soaks in those afternoon rays. I wonder what kind of man he will be when he's older, and what will be his career? his calling? Will he be an archaeologist? A forest ranger? A geophysicist, surveying cores of the earth?
He dribbles dirt and pebbles in a little pile next to my hand, then hops up and runs the rest of the way to our front door; it's as if he knew I was jumping too far ahead. I take a quick breath and run after him.. let's figure out Monday. The rest of the days will still be there when it's time.

a version of this post was the editor's pick today at OpenSalon.com

Take a Deep Breath

2011-10-21T02:45:00.000-07:00

It's been a rough back to school for Jake. Going from playing outside all day with very few demands back in to class is hard on most kids, but there were also staff changes in his classroom in September, and lots of changes with aides at home. Not to mention a growth spurt and a migraine thrown in for a few days. Sadly, he has begun hitting himself on the leg repeatedly, enough to cause a little bruising. It kills me that we can't figure out some ways to soothe him out of the stim, but he's doing it when he is seemingly happy as well, so we've added it to the wonder and mystery that is our son.

It's possible there has just been too much going on. Jake had his trienniel IEP, along with all of the psychological and developmental testing that goes along with measuring the minutia of a child with so many services. His teachers came to the house for a visit, which was lovely actually, something I wish every school-aged child could have at least once. After the home visit his teachers now have a frame of reference for all of the things we talk about, which I think is helpful since Jake is basically non-verbal. And the actual IEP went very well because those educators, staff directors, and the psychologist -- the OT, and the adaptive PE guy, and the speech pathologist, and all of the support staff, they all really care about my kid. I think they even like him.

Then his Regional Center social worker came for her annual appointment, where we went over his IPP. That's his Person-centered individual program planning. Sort of a life-map plan for Jake, so that he can continue to get the services he needs from the state. This meeting also determines the number of respite hours we receive from the county. There are a lot of forms. This year there were some tears. The goals didn't change much from last year, and while I know Jake has grown and changed, the paperwork just won't ever tell that story very well.

There was also a meeting with his IHSS social worker. In Home Support Services are monies that "help pay for services provided to you so that you can remain safely in your own home." His disabilities are measured from top to bottom, and his entire day is accounted for. We speak of his needs in quarter hour increments, and calculate, how much time does toileting take? cutting up his food? And does he still need help getting dressed? Can he get into the car by himself? Can he brush his own teeth?

And lastly a visit with the doctor at CCS, California Children's Services, which addresses the cerebral palsy part of my child, as if we can just divy up his mind like that. We talk about wheelchairs and shoe inserts and medications, and how much he's grown. We talk about puberty. Puberty! The meeting takes place in the same room we've been going to for nine years, or is it ten? So we are half way through the services there; CCS stops providing services at age 22. Half-way through his childhood? already?

We are very blessed with kind social workers who really feel like advocates for our family, and a school district that truly honors IDEA, and a school that loves my child and wants to help him to become a productive adult. We have all, or at least most of the services in place that we need, and I can manage to paperwork and the running around that is required of each service because I can work from home.

But every time we have these meetings in a row, and they are always in a row, right around Jake's birthday, I am exhausted. Of course each meeting requires preparation on my part, but it's not that part that is so tiring. It's talking, for hours on end, about all of my son's deficits. It drains me. completely.

and when I'm that drained I'm sure Jake gets frustrated because I'm probably not "hearing" Jake as well as I normally do; much of his communication is subtle. At least twice during these meetings I had to speak about him, in front of him, which makes me feel awful, and it can't be that great for him. I normally speak without him nearby, or I remember to tell him who is coming and the things I will need to share with that person about his abilities, but I forget sometimes, and no matter how carefully I word things he might hear, it can't be that great to hear a list of all of the things you aren't good at. I'm certain that would make me more than a little agitated.

But we are done for awhile, so I can only hope that as I catch my breath and pull everything back together, Jake will do the same.

Stretch

2011-10-18T14:58:00.000-07:00

I'm responsible, capable and able to make good decisions in a crisis, but I am not a very 'calm' person by nature, so yoga, with it's years of practice to become a master, and it's zen-like relaxation... the silence and the named poses, none of it seems like it would be a good fit for me. But I've tried.

The first time I went to yoga was with my dear friend BQ. It was "relaxation yoga" at the beautiful YMCA near her house. We took our precious baby girls who were barely toddling, and probably both still nursing, placed them in the uber-awesome childcare with seasoned staff and happy decorations and ironically ran to make the class. There were mats to get and blocks to place and blankets to fold; we filled our water bottles. Class began by lying down on the mat. Of course, "lying down" is not an exercise to me, so I was immediately frustrated because if I was going to take any time for myself then DAMMIT it was going to count and I was going to be in shape and healthy for my children, and as I laid there, cursing myself for thinking that anything with the word "relaxation" in the title was going to be my speed, the pager went off from the nursery, and I was called back to pick up my crybaby. As nice as the staff is, they did not appreciate my daughter screaming her head off.

Then I went to Bikram yoga with Pollyanna.. where they crank up the heat and steam until you want to throw up as you pull your right foot up and over, opening up the pelvis.... I lasted the entire class and was congratulated for doing so. Then I felt dumb because I realize I could have left. It had not occurred to me that "quitting" was an option. Because dammit if I am going to take time for myself then it is going to matter and I am going to DO THIS. I went back one more time before I randomly hit my head on the tailgate of my not-so-mini-van and gave myself a bonk that rendered me unable to find the right words to say, and an ache in my head that took a week to get rid of.

Next I tried some yoga/pilates torture with Squid. We went on Tuesdays for a month, for a 90 minute class. It was very hard, and the instructor of the first class made breathing sounds that sounded way too intimate for me to do anything but keep from giggling. The other two sessions I attended went well, but when I went to sign up for more I just could not justify spending $20 a class, when twenty bucks can buy so many other things.

But this morning I woke up and I wanted to go to yoga. I wanted to sit in a room with other bendy humans on a large flip-flop and contort my body, pull at my toes, and try to reach the center of my back... on purpose. I did not grow up in a family that encouraged regular exercise or sports... no discouragement... just no real nudge for athletic achievement, which is funny, because I have great hand eye coordination and pretty good spatial awareness. I do however find that tasks which do not accomplish more than one thing at a time sort of gnaw at me. Treadmill, blech, but a hike? yes. a walk about? yes. strolling downtown to hear music in the square? Count me in.

When Descartes and I are by ourselves without the kids, we lead a much less sedentary life; we walk places, go on hikes, park farther away, take public transportation. I think we eat better too.

I'm not sure what it is about both of our kids together, or is it Jake's muscle weakness.. and our need to use the wheelchair? It all makes exercise seem impossible. And when they are at school I feel like I am catching up on work and paperwork and shopping. When would I take a full hour and have it be all about me? Well, apparently at 8:30 am after bus and school drop-off, at least for today, it worked. And maybe it will work on another day this week, or the next. Today I went to yoga, for me. Not to keep someone else company, or because there was a coupon. I went because my body wanted to move that way today.

I'm hoping there are some busier days for our bodies in the future. Jake is inside that trailer in the picture there. He's grown out of his last bike trailer, and as Lucy is old enough now to learn to ride a bike, she's been asking more and more often to go on bike rides as a family. It's a from a company called WIKE, and is both a bike trailer and a jog stroller. Jake doesn't have the skills to ride a bicycle yet, and he gets tired after about 1/2 mile of trail walking. This trailer will get us through three or four years of Jake growing, and hopefully provide our family with some great outdoor time. At the very least Jack had a great time in it being hauled across the soccer field last Saturday.

I think parents with special needs kids forget to take care of themselves, I know I have. Moms generally have a habit of putting themselves at the bottom of the list. But Jake needs a lot of help physically, and if I don't "increase my core strength" and build up a little bit of muscle, it's going to become increasingly difficult to care for him without significant help.

Today, I went to yoga.

I Yell. I YELL!

2011-10-05T12:40:00.000-07:00

I yell. Not all the time, and not at every body, but I yell, I raise my voice. I know I do. In fact I probably want to yell a lot more often, but somehow I have figured out that generally it's not appropriate. People don't think very highly of you if you yell a lot. I know I don't think highly of people who yell a lot.

I don't yell at my husband, or at least it's very rare these days. When we were first married he let me know that it was possible to have an argument without yelling. In fact, he thought it was possible to have a discussion and not an argument, something that I'm still working on, I suppose. I grew up with a family that tends to come in fast and hot, solve it and move on. Descartes said, "We're going to be together a long time, and I just won't talk with you if you yell." So I don't yell at him. I might holler across the kitchen, or from the back yard, "Do you want cheese on your burger?" No. "Do you want another beer?" Yes. I want to raise my voice sometimes when I am very passionate about something, but I try to be respectful of him, and our marriage, and I want our children to see that two people can disagree, come to a conclusion, and stay married, all while being kind to each other.

And I don't yell at Jake, because, well that's not cool to yell at a special needs kid right? No one thinks that's okay. And I'm not sure he always processes everything I say when I'm just talking, so what would be the point of yelling at him? Asking him to hurry, or get off of something, or into something, or around something is often futile at best, so it just never occurs to me that I should yell. I've been frustrated, many, many, many times, and I know I've raised my voice in fear; yelling "NOOOOO!" as he darts away from me in a parking lot, or scrambles towards an open door...heading to a swimming pool. I've been tense before, used a stern voice, and cried and sobbed with him, but I don't think I've really yelled at him.

I do yell in the car sometimes when I'm alone. I might yell when there are dangerous drivers, or radio news that reports of laws being passed that are discriminatory, or politicians who-- well, almost any politician can raise my ire a bit. I've yelled at my computer screen at other bloggers, but mostly these incidents are far between, I stew rather than scream.

But, I've yelled at my daughter.

I get frustrated and I yell. I get exasperated when she does not do what she is supposed to do, like get her shoes on, or go to the bathroom before we leave the house, when I ask her to. Then the time rolls around to depart, and she, with several reminders, hasn't done whatever simple, but time consuming task it is. The consequence is that the whole family is then rushed, and possibly late. If we miss Jake's bus, that's a 40 minute drive to his school, one-way. This new school year has presented the scenario where there's about 12 minutes between the time Jake leaves for school and the time Lucy needs to be in class. Luckily the school is 4 minutes away, but we need to park and walk and the later we are the farther away we need to park...

It feels like we do not have a lot of room for anything else to be any more difficult than it naturally is. I need everyone, we need everyone, to do what they are supposed to do, when they are supposed to do it, and do it to the best of their ability, every single time. Which means that Jake needs help with every single thing, every single morning, but Descartes and Lucy and I should be able to get ourselves together. I make sure she has all of the components of her outfit. I 'do' her hair. I make her breakfast, and pack her lunch, and get her backpack ready to go because, I'm not an idiot, I know she's only five.

But when she doesn't do those other simple things? I yell. Sometimes loudly. "NOW! GET YOUR SHOES ON RIGHT NOW!" and of course it doesn't help anything. At all. It probably even makes things take longer. Then we get in the car and my heart is racing and Jake who hates being rushed, just wants to get the hell to school and away from us, and the day has begun with anger instead of calm, and we can't ever go back and make it different. Another whole day of our life has started with Jake agitated, me feeling like a crappy mom, and Lucy feeling like...like what? What emotion is she taking to school and sitting with for the day? And what have we gained?

What I am wondering, is this: am I taking every single thing out on her when I am yelling about her tiny little white tennis shoes, because I can't yell at anyone else? Is it just my nature? Does she perhaps push me farther than every other thing on the planet? Am I destined to yell at my daughter, because that's a style of "discussion" I'm used to? Is it that we are so alike that she knows all of my buttons and presses them systematically like she is testing a shuttle before launch? And what am I teaching her by yelling? What will we have accomplished at the end of a verbal spar?

I'm more aware of it lately. It feels like it's been happening more often, though it probably hasn't. It may be she's exerting independence in more places, which is age appropriate, but I don't want to have these interactions every day. I'm not calling her names, or demeaning her, I'm only ever repeating the task that was supposed to already have been done, but it makes me feel awful, even when I know it's not that dramatic or bad. And I'm sure it makes her feel awful too... recently I've found myself apologizing to her hours later, and it almost always turns into a good, productive conversation with talk about how to do things better next time. But right now, it renders me unable to fall asleep at night, and makes me want to wake her up after she's been in bed, just to have some more positive moments in the day.

Do you yell at your children? At just one of your kids? Is it a phase?

****

note: I wrote this post several weeks ago, just as school was starting. Things have settled down into a better routine in the morning for all of us, and Jake is out of the 'episode' he was in. We have had a couple weeks of nearly yell-free mornings, but I think I need to continue to think about how I interact with Lucy because it feels like she could be an easy target for my frustrations.

a version of this post was an editor's pick today at OpenSalon.com

Ya' Been Busy?

2011-09-19T02:45:00.000-07:00

from my mom, after almost a week without hearing from me, and no blog posts to read:

hi,

I assume I still have a daughter??? have ya been busy?

Love,

Momma

my response:

Work presentation, finally got my hair cut/highlighted for first time since May, editing TPGA manuscript.

Lucy lost her backpack (with awesome lunchbox, all of the cool boxes that actually fit inside, a new pleather jacket that she has worn once), several school functions.

Triennial IEP for Jake, which is a very big deal with a lot of talk about deficits..reestablishes his being able to stay at Wunderskool. Then annual meeting with Regional Center social worker to determine eligibility of respite hours etc.; more talk about deficits.

Sister and boys in town since Thursday.

Jake very agitated for the past week or so, hitting himself, hard, on thigh and face, and not sleeping. Lucy lost another tooth. (I told her the tooth fairy can't come until Monday night.)

Seems like everyone has reflux . Screen door (in the back) has been removed because it broke beyond repair.

Every after school child-care/aide we have, has changed their hours. And now, backed up plumbing-snaked it four times.

That is the last SIX days. I wonder what Monday will hold (aside from calling the plumber at 8am)?

*******

of course we did do fun things too, which I failed to mention in my email.

in those same six days:

I visited my son's classroom and got to introduce a new aide to how we interact with Jake.

I cleaned up the dining room table (my office) by putting things away or throwing them away rather than stashing the stuff somewhere else.

We went as a family to my daughter's soccer team. (Yes, I am the 'team mom', but I asked someone else to bring the snacks this week! I asked for help!)

We went to an evening fundraiser at Lucy's school and ate cotton candy and looked at cool cars.

I put some finishing touches on an awesome project I'm working on.

We had a prodcutive editorial meeting for TPGA, and we are well on our way to getting the book out.

My husband, sister, and I went out with friends to a new Tepanyaki resturant and practically had our eyebrows singed off at the Benihana-style grill table.

We home-brewed beer on Saturday night so that it will be ready for my sister's birthday.

We took all of our umpteen kids downtown to listen to music and play for free on inflatable jump houses.

and I took a nap.

I'm the "Mom Next Door"

2011-08-26T04:15:00.000-07:00

Did I mention that my family is featured in Dandelion magazine's Back-to-School issue? It was a fun photo shoot (all photos are by Sara Atkins, who worked so well with my kids..thank you!) Clearly we are big dorks, but Dandelion is a great resource for Bay Area special needs families, I hope you'll check the magazine out.

"One of the hardest parts of having a special needs child can be the loneliness and isolation,"
says Jennifer Byde Myers. "If you can't find the community you need, build it."

"I can't live without... my husband. It might sound cliché, but we really are a great team. And though I'd like to think I can get by without it, a good wi-fi connection and my smart phone make life much easier."

If you told me 10 years ago where I am today, I'd be surprised that... I drove a mini-van. Really? A beige mini-van? With beige interior?

The article says that The Thinking Person's Guide to Autism book is out, but it's not quite there yet, just a couple more months....

Things I Learned This Summer

2011-08-22T11:38:00.000-07:00

It's been a great summer. We didn't cross the country, but we did some fun things, and our kids are happy. It's also been a hard summer for me. I worked more, and had less childcare, and no or less school for the kids. I had several trips that I went on solo, which were each amazing, but also required monumental amounts of childcare coordination and scheduling.

Here's what I learned on my summer vacation:

All camps should have drive-through drop-off and pick-up. Letting the baby sleep, keeping the special needs kid buckled-in safely, or the dog comfortably stay in the car is so wonderful. I am ever-thankful to the camps that made things easier for parents this summer. It specifically made my life less complicated.
We need to figure out a way for there to be childcare for special needs children. Really. What happens to all of those aids when school lets out? What happens to those aids after 1pm every afternoon. Finding childcare for a special needs kid is always hard, somehow during the summer it is a lot harder. Maybe we could private pay our schools to have after school care like every other typical kid has? Where is the after-school care for special needs children?
Camp for my son is one of the most awesome experiences we have as a family. He gets time in the woods with people who focus on him. We know he's safe so we can relax and leave the doors unlocked for a few days. If you have a camp in your area that offers care for special needs kids.. make a donation to them today. They are life savers for the parents, and the learning the children and adults do at those camps is life-changing.
Air conditioning is not a luxury for our family. If things get "more than regular" difficult and I am hot, I cannot function. The first things I do is turn on the air conditioning when I am going to need to deal with something hard in our house or car.
My children love the outdoors. I've always known this, but it is amazing how happy they are when we are in a National or State park. It's like they might actually be 'getting' the lessons we are teaching them about the beauty of this country, and the amazing natural resources we have right here in our own state that no one else in the world has.
From our house, it's possible to drive to Yosemite for dinner, and we will be doing that at least once every summer. It is ridiculous not to. If you live that close to a National Park, please go, or send a donation in to keep it well-staffed and full of rangers who answer every single question my daughter can squeeze in.
It's also possible to get to Muir Woods before lunch; even with a gaggle of children. We will be doing this more often as well. A lot of it is wheelchair accessible.
I get teary-eyed every time I'm in a National Park. I am just that sappy.
In-n-Out Burger can provide the right nutrition and fun for my family, and as long as we don't do it all the time, it is not only okay, it is a happy, inexpensive treat that makes everyone relaxed. And if you go to In-n-Out and then stop by my house, assume one of my children will steal your milkshake. They don't care if you have a cold.
I need to put in automatic sprinklers in the front yard. I cannot actually water that many square feet every single day by hand. It looks like my front yard is a chapter out of The Grapes of Wrath, and the crops from our garden this summer are about as good as a 1937 Texas panhandle farm.
My son has a lot to say if we are willing to wait patiently for him to answer the questions we ask him. Once again, he is teaching me that I have a lot to learn about listening and not assuming.
Home-brewed beer is awesome, not that hard to make, and something my husband and I can do together that does not involve leaving the house or watching television.
I miss my family when I don't see them, and even though I make them crazy, I think they might miss me too. As much as I love living in the Bay Area, it has been a summer with no visits to my family in the O.C.
Buying school supplies for my
kindergartner was unexpectedly one of the most exciting and heartbreaking things I've done lately; there are no more babies in my house.
Always buy more sunblock than you think you will need. Now that we have taught children that they must wear sunblock, it is very hard to get them out of the house/car without it.
I live in such a great, warm, activity-filled city, and we love going to all of the music in the park concerts. We have also discovered another version of a perfect summer Saturday in our town: farmer's market with friends, beer garten with those friends, and more friends, splashing and running around the downtown square fountains, then home for a family nap.
and, of course, I figured out that my children will get older no matter how hard I hug them. I knew we were all going to grow up someday, I just didn't see it coming for a few more years.

I hope you had a wonderful summer. We had our first day of kindergarten this morning:

Home Again

2011-08-12T03:45:00.000-07:00

I went to BlogHer11 last week. I road-tripped with one of my bestest friends AND her mom AND her girls, and managed to be packed and ready to go at 5am. We slid past the San Luis reservoir at daybreak, and in record time were able to gobble delicious Mexican food in Southern California. I even managed to sneak a quick visit in with my Dad over those delicious enchiladas. Another couple of hours, and I got to meet the cool group of people at Oceanhouse media. If you don't have any of their apps go check them out. Road tripping with someone who has a plan is an awesome thing. We were efficient, on time, and uhm, she drove the whole way to our destination. My stay in San Diego/La Jolla was lovely of course. Our hostess has created a welcoming, easy-to-slip-into type of place--she even has homemade jam; it is a tough place to leave (and I thank you again for having us.)

I had the best bunk mate ever. We talked, and talked, and talked, and then she told me a story about the axle on her car? Maybe, and I fell asleep. Sorry I'm so rude. Sorry I "snore lightly." But mostly I'm really sorry that we don't live closer, because She made me laugh so hard that other people couldn't even type. That tweet by Liz Ditz above should say "laughed so hard she couldn't talk for 5 minutes", but it's also likely that SJ could make me laugh hard enough to get knifed five times too. It's not often I get to have that many uninterrupted conversations with someone so smart and sassy who also has such a depth of character. She even convinced me to do a little cooking demonstration thing with Knorr with Marco Pierre White. It was fun, Chef White was very gracious, and I got some cool free samples of Knorr stock and a signed book, and an apron which I actually really needed. And Chef White did not shame me when I basically needed a half cup more of parmesean on my risotto. I really love risotto, especially with parm and asparagus, and cooking with friends is one of my favorite things.

I danced at the evening parties. I even fell on the dance floor like I did at that wedding when my brother threw me across the wood in a reckless Tango move.. but this time I was the designated driver, so it had more to do with my tiny heels and my amazing dance partner Jen Lee Reeves, of BornJustRight. Who also made me laugh quite a bit, now that I think about it.

And of course there was that great Special Needs mini-con on Friday. I was honored to help the unstoppable Julia Roberts (not that one) from SupportforSpecialNeeds.com. I didn't do much, but she did a fantastic job setting everything up, and the 80 or so people that came were some of the vibrant, deep-thought, hilarious bloggers I know online. The speakers on the panel were Shannon Rosa, Auriela Cotta and Robert Rummel-Hudson. I think I can call Robert Rummel-Hudson a friend now, and not just because I brought him little tiny ice cream bars at one of the breaks, but because we share the same passion for wanting to come together as a group, united as parents of special needs kids, in our desire for positive change, and take on those completely uncomplicated things like health care and insurance reform.

BlogHer is one of those magic places that helps blur the lines between IRL (in real life) and online friends, and that's a good thing, because as we get more wired in, with Google+ and Twitter and Facebook, it's hard to say I'm not "close" with someone just because I can't meet them at our Thursday morning coffee. As I sat next to Laura Shumaker at the mini-con, and later at dinner, I realized how lucky I am that I can probably hang out with her as much as our schedules allow (and we are totally going to do that as soon as my children get their buns back in school), but with BlogHer, and the whole interwebs thing, parents of special needs kids don't have to feel so isolated anymore, and anyone can hear all of the wise things Laura has to say just by visiting a website.

Things might get sort of tough sometimes, but we can find each other in the middle of the night online. On those late nights when we think that we are the only person with a ten year old who is wandering the house checking for ways to get outside, it's nice to know I have friends on another coast who can offer advice or support. We never would have had the opportunity to help each other 20 years ago, and two years ago we didn't even have a mini-conference. Talking with Ellen, from Love That Max and Shannon, of course, I know we can build on Julia's good work this year and create an entire day..let's expand that mini-con, I think we have a lot more to say, and even more to do.

Sweet Lemons

2011-07-25T22:42:00.000-07:00

My wedding anniversary sneaks up on me each year. It marks the passing of time for me much more clearly than my birthday ever will, because I can remember every year I've been married, whereas there are entire years and seasons I cannot remember from childhood (in spite of my freaky ability to recall events from the past).

We don't celebrate our anniversary like many couples do. We are hardly Hallmark, but we do exchange cards some years. I can't remember the last time we exchanged anniversary presents, and as much as I love fresh cut flowers, I haven't seen (nor would I hope to see) any long-stemmed red roses.

One thing Descartes has purchased for me over the years, and is much more representative of who we are... are fruit trees. On our property we have a cherry, an apple, a tangelo, a kumquat, an avocado, a Behr lime, a pomegranate, and the jewel of them all, the Meyer lemon tree.

When I awoke this morning I remembered that Descartes gave me that Meyer lemon tree right after we got married. He gave me the lemon and the lime. They were in large heavy pots that were too big for them, and we put them out on the cracked little patio of the teeny, tiny post-war housing-boom-era house that was the first "real house" we lived in. That house was so small that if Descartes put his shoes down on the bedroom floor there was nowhere to walk. And it was oddly chopped up, because somehow in an 850 square foot house, we had two bathrooms and three bedrooms and a laundry room, and room for a piano and a dining room table. We were so happy not to be living under someone, or with someone, and buying those trees made it feel like it was really our little house.

We moved the next summer and took the trees with us to our new home on the Peninsula, a house near Descartes' shiny new office, and much closer to mine. It was hot there, unlike the misty cool of Berkeley. It was especially hot that summer, and the owner of our rental house chose to landscape with lava rock, which just sucked in the heat and kept it there. We left for a seven week tour of Europe to celebrate our one year anniversary and had to leave those poor little trees. I worried about them so much that I bought special water gel capsule things that were very expensive at the time, and I prayed they would last that long without water; we didn't have any friends yet nearby that we could even ask to water the plants.

The trees were barely alive when we came home, but they struggled through. We had one lemon that year. I remember because I used it as a garnish on a salmon I made my parents, and Descartes' parents when they came to see our little lava rock house.

And then we got pregnant, and we decided to move again. We looked at houses, took a deep breath, and spent every dime we had putting a down payment on a house.

The trees are in the front yard of that house now, along with all the other fruit trees we've acquired. The lime is still properly a dwarf lime, it's branches spread about three feet across and it is just as tall. But the lemon tree forgot it's grafted roots and spreads 10 feet across and more than 6 feet high. It is prolific. There are lemons year-round, and they are sweet and amazing, and the perfection of what we think a lemon should taste like.

I hardly ever water the lemon and it's still out there, right now, flowering, and heavy with fruit. We will make home made lemonade this summer; Lucy still wants to make a stand on the corner. And I've chopped a bunch of them up to put in sangria which I served over 4th of July weekend. And I'll make candied lemon peel at Christmas, and serve twists and slices in whatever drink Squid decides is her favorite. And make lemon curd, and what else I'll do...the list is as long as the ways Bubba's mom makes shrimp.

The tree in the yard makes me happy every time I see it, even I hadn't really thought, until today, how far that tree had come with us. We've been through a lot of things in the last 13 years of marriage, and that tree has been around for all of it.

We've taken down wallpaper, made beautiful babies, put up pickles, and played on beaches. We have conquered MRSA, snaked all the drains, and robbed Peter to pay Paul. We've made homemade wild plum jam and our own beer, that was worth drinking. We have happily navigated the loneliest road in America, strapped babies in a LandCruiser to put them to sleep, and driven each other crazy.

Showing our children a national park or pulling weeds in the front yard, we have the same goals in life, and we are good together. And when it's hard, we are still good together. We make the best of things, and we treasure the moments that life is sweet. I am so grateful for every year we've had together.

****

I love you and our life filled with lemons, lots of sweet, beautiful lemons. I would choose you again.
Happy anniversary to my wonderful husband.

p.s. sorry you are reading this at the same time as the entire interwebs. uhm. yeah.

****
a version of this post was an editor's pick today at OpenSalon.com

Parenting in the Park

2011-07-14T07:32:00.000-07:00

arbitrary

I took both of my children to the park the other day. It shouldn't be some sort of big announcement that a mom takes her kids to the park, but I was by myself with my two children, who have very different, needs, wants, and abilities, and I am a chicken. There. I said it. I am a scaredy-cat when it comes to taking my kids out into open, uncontrolled situations by myself, unless Jake is buckled into his wheelchair. He has escaped my grasp so many times, wrenching my shoulder as he goes; and he is fast. And as mature and amazing Lucy is at 5, she really is still a small child who deserves to be looked after on a busy street, or a park... but it is summer, and my children are convincing, so I took them.

Lucy providing high direction, high support

Lucy was very excited about playing in the cool water fountains that are shaped like Crayons. She got to learn the word "arbitrary" when I remembered that the park and rec department turns off the sprinkler fountains between 12pm and 1pm, and again from 3pm to 4pm. Because, apparently we cannot decide for ourselves when our children should have lunch, and a snack. It worked out fine because she got to play in the water puddle that had already been created, and managed to put together an engineering plan to create a dam that rivals the Hoover. She had no problem hiring the one of the unnamed boys near her to hold 'on' the foot sprayer nozzles to collect water, and the other to bring the bucket to her building site. She seemed like a decent ~~overlord~~ boss.

Meandering with Purpose

Then there was Jake. Precious boy who I forgot to put in bright orange before we left the house; I am rather particular about this. When he goes on a field trip, to camp, into the woods, into a crowd, okay, when he goes almost anywhere I put him in yellow, but more often, orange, actually, bright orange. He has his own hunter-safety-orange cozy jacket for camping trips. The afternoon we "lost" him in dappled sunlight when he was only 6 feet away from us was the last time I let him get near any vegetation without an easy way to spot him.

Can you see him? Yeah, Neither can I.

So of course the first thing he does is head for the only corner of the top portion of this park where I would not be able to see him. I didn't worry a bit because the chain link fence runs the entire way around the park. But wait, I couldn't actually see that corner post, and what if the fence were made by two brothers who got in a fight half way through the project and so there are really two corner posts, and a gap between them which leads STRAIGHT OUT TO THE STREET. I was only about 40 feet from him, but if that corner was open, which I knew it wasn't, but if it was, he was only 20 feet from cars pretending to drive 30 miles per hour.

myBoy in urban camo

I ran. I ran as fast as I could, and I lost a shoe on the way because I am an idiot and had thought, "Oh I can just wear my sandals because I am going to sit and watch my children play, and I will put my toes in the warm sand." I ran across the tan bark that my son loves so much with one open-toed sandal and one bare foot, and there he was, in the corner, where the fence was perfectly closed and built to code etc. I tried to give him some space, but it was very hard for me to not be able to see him, even if I knew there was no way out except past me.. because maybe today was going to be the day when he gains that fence climbing skill? We just never know. And if you are wondering if he laughed a little bit when he saw me plucking tan bark out of my sandal, the answer is, "yes." I let him play in the corner until he was done, and it may be my imagination, but as soon as I stopped being riled up about it he stopped going back there.

ooooh so close to escape.

Our visit to this little neighborhood playground, it wasn't all bad, or scary. On the busy street I had to parallel park between two cars that were over their little hash lines into my space, but we did get the safest spot, right next to the path that leads to the park. And every single family that went through the gate on that path, closed it behind them. The weather was beautiful, and Lucy was a good listener the entire time, which was pretty remarkable all by itself. When it was time to go, she left the park without complaint or stomping of the feet.

And while we were there, Jake got to work on those motor skills that are so important. He practiced "jumping off", which is different than "walking off", of something. I got to practice letting my son be outside of my grasp, which feels a lot like being "thrown off" of something. I did put my toes in the sand for a moment, and the kids had a great time playing.

There will be a day when my children don't want to go to the park, not like this at least. An afternoon will come that my daughter doesn't ask me, even one time, to play with her. It's possible that Jake will live somewhere without me when he's older. I want my kids to remember playing and running around. I want the smell of sunblock to remind them of all those days of being in the sunshine in our beautiful park-filled city. I'm trying to remember that these are the days when we should paint, or make lemonade.. or do as Lucy has asked and have a lemonade stand with a painted sign.

And I am trying to get over my fears that by myself, out there, in a park, or on a walk downtown, that I won't be able to keep both of my children safe. I know I am perfectly capable, but there are so many ways things can go wrong, and I've thought of them all. My brain hurts quite often with all the "choose your own adventure" stories in my head. However, I'm aware that emotion does not make fact, nor does a lively imagination, so the truth of it is, that most of the time, everything goes just fine. Everything will be okay, or it won't, but fear has very rarely led to anything good in this world, and it certainly has kept me from some beautiful days in the park.

*****

a version of this post was an editor's pick today at OpenSalon.com

Is the Gate Locked?

2011-07-06T02:45:00.000-07:00


check. double-check

We don't ever really relax. We think we do. We get babysitters and go out for drinks with friends. We take turns keeping an eye on Jake, but really there are only five days a year I do not worry about my son: the 'week' he goes to camp. Other than that, my mind, and quite often my body, is on duty twenty-four hour a day. Part of that responsibility is just what it feels like to be a parent, but I've seen other parents with typical kids, and I see how they can let go of their child's hand in the store, leave the car door or window unlocked, leave the back gate without double-checking the double-lock. They can expect that their child is not going to shimmy through the dog door, and just about disappear in silence.

But there are places that are easier than others. Places where I can let my guard down a little bit, because I either have the safety in numbers of responsible adults, or a well-enclosed space, or just one other person who completely gets my kid, and can recognize things that will be dangerous even if they look safe for another special needs kid.

Our house is one of those places, and thankfully we own our home and can make improvements and adjustments to the walls, and fences without asking any one's permission. Our home is safe, but not without some very serious rules, and a lot of attention to detail. If you come to a closed door or gate in my house...there's a reason, and it's probably not because I don't want you to see me naked. If you make a mistake and leave even one gate or door open, there could be consequences that range from, dirty shoes on the bed (so don't care), to a child covered in dog poop (completely annoying), to a boy who has wandered past the driveway (very worrisome, and I can guarantee that I will cry when we find him), and of course, there's death, because we really can't be sure of Jake's safety awareness, and it's not like he is just going to come back on his own, unless he decides to return through that open gate. Lucy just turned five, but after a pre-teen visitor to the house left the back gate open, I told her that no matter who comes in behind her, even if it is a grown up, it was her responsibility to make sure the gate is locked after any time she passes through it. She gets it, and has done it without complaint, but the amount of responsibility we must place on her is nearly unbearable to me.

Mt. Tallac at sunset.

Tahoe is a safe place for Jake. My sister and her husband, and their children all look out for him, know his abilities, and know when he is not okay by the tone of his vocalizations. The backyard is large and gated and filled with toys and tan bark and a trampoline where the little kids entertain him with their bouncing, twirling and bickering. I know that Jake cannot escape from the backyard, so when Demanda and Jaster clean up the entire place for Jake (thank you thank you thank you), all we need to do is periodic checking for dog poop, which you would do for any bunch of kids playing. With everything taken care of, we can sit on the upper deck, all four children within our view. With nice weather and a frosty beverage this almost looks like relaxing.

And even luckier, I have a few friends who either have Jake-safe homes all the time, or who care about his safety enough to change things while we are there. One family has cleaned up a dirt area and put in palm-sized rocks for Jake to tumble, and ensures that the pool gate is locked at all times, and another has a big front yard that is fenced and filled with dogs and kids who will not let him go out the front gate. We have still more friends who try, in every way, to make their houses a place where we can bring our entire family, by checking gates and keeping the front door closed, even when it's an Open House.

But as much as I really do not want my child to be injured, there is another part of him being safe in our home, in our extended-families' homes, and our friends' homes which may be even more important; it's acceptance. Acceptance cannot be nailed into a wall, or double-locked. Creating an environment of acceptance is not as easy as just sweeping up.

Acceptance is knowing that my son might trample your new grass, or steal the top soil out of your planter, and inviting him to play nearby them anyway. It's not really keeping track of the number of little things he's swiped off your counter, and hidden or broken. And not being too bothered by the copious amount of food that always seem to be at my child's feet. It's inviting a child, my child, with 'toileting issues' to come swimming anyway. It's believing my son has something to say. And it's forgiving me when I can't clean up our debris and dishes because we "have to go RIGHT NOW."

It's inviting us over at all.

And it's inviting us back.

I am thankful.

****

a version of this post was an editor's pick today at OpenSalon.com

Venting Frustration: Mental Health

2011-07-01T11:47:00.000-07:00

I think Jake might need to go back on a medication to help him concentrate at school, and be able to sit down for dinner, which he can no longer do unless he is in his wheelchair. He stopped taking the previous meds in the fall, after several weeks of behavior that did not dictate further use of the medication, but before the next round of school I think he should be evaluated... so I put in a request with his psychiatrist at the medical foundation we visit; a place about which I usually have lots of good things to say.

In response to my request for a morning appointment any time between now and the end of ages, I got an email back, saying that since it had been over a year we needed to contact the Intake Coordinator via the website or by phone. The visit to their website didn't take me any further in the process.

So I called them, and was told that we need to do a "patient intake."

Fantastic! She asked for all of our insurance information, and verified our billing address, and my husband's ID numbers. And I got to hear about how the doctor we've seen for five years is going to be an out-of-pocket expense, and of course I know that because it is very expensive to go to an out-of-network doctor; but he is worth it. This guy knows his stuff, and more importantly he knows my kid.

But wait! As it turns out, Jake's 'regular' doctor is no longer accepting 'new patients' because we are now considered a new patient. I can call back in three weeks and see if he has opened his practice to 'new patients', and continue the intake process. Even though we have seen this doctor six or seven times in the last five years (more than he's seen his dentist or his neurologist), we get to start over.

Oh, and because we are a new patient we get to pay over $500 for a 1-1 1/2 hour parent/child visit, then several hundred more for a 45 minute patient only visit... good luck with that one. And as a reminder, I may not leave a child under the age of 13 unsupervised in the waiting room. Acknowledged.

And, this was just the first phone call before I can even schedule that appointment. Next comes the call from the other half of intake coordination... asking all of the medical history part, except it might be a short call since he's been seen here already. Well that's nice.

So are we a new patient? A kind of medium-old patient? We're like a 'restored' patient maybe? We saw the doctor 20 months ago. If I had made an appointment 8 months ago.. just to "check in", even though we didn't really need to, it would have cost us $150, and we could just make another appointment with him now for another $150.

This is not about the money for me really though. I am just sad and frustrated, because dammit this life is hard enough already.... why else would I be calling them? At what point in this process are they taking care of the mental health of my child (or me for that matter?) How many phone calls before I can schedule an appointment? How many hoops?

But let this be a public service announcement: If you want to keep seeing your very-important-to-your-health doctor when you need to, ask what their policy is on how often you must be seen to remain an active client. If the doctor has a wait list, chances are they have some awesome policy like this one. Let me tell you how much I wish I had just sent them $150 bucks last year.

Okay then. I cannot take care of this any more today or my head will pop off. I already said the f-word in a conversation with my parents, so that tells ya where I am with it all.

and now I will return to my regularly scheduled packing for a wonderful weekend in Tahoe. We will be adding brandy to the sangria tonight. Have a lovely weekend friends.

*********

an update: the office staff called me Friday afternoon late and we decided she would contact the doctor to get an exception. The phone call I received this morning 7/5 confirmed that the the practice is still closed and I can try in three weeks to see if there is an opening, or start over with the other doctor (who is also out of network... no thanks.)

I am not going to fight this one because I can't have a doctor/patient relationship with a provider who shows this kind of disregard; my son's appointments take approximately 35 minutes once a year. We pay $150 for this privilege. It's time to start looking for a new doctor.

I will not slander the medical abilities of this doctor because he has been extremely helpful in the past, however I will not be recommending him in the future.

Love and a Dustpan

2011-06-23T22:42:00.000-07:00

I haven't swept the floor all week. Not once. It is unimaginable that my kitchen floor could go six hours without needing to be swept, and it has been nearly five days. I am giddy that my feet are free of crumbs, pebbles and warm black dirt from our backyard.

Sweeping is one of those things that I do not put into the category of "things that make our family different from other families." "Carries wheelchair in vehicle at all times" and "must have a straw or sippy cup available for my 10 year old" are in that category, but sweeping? How many times each day does a family with a ten year old boy sweep the kitchen floor? At our house the number is nearly uncountable.

Jake has been at camp this week. He's likely living it up right now at a dance or talent show, followed by some happy snuggling into his bunk. He's spent days surrounded by singing and crafts and pool noodles and fun. When he comes home, he'll grubby and covered in sunscreen and his laundry will need to go through both pre-wash and second rinse. And by this time tomorrow, these bare tiles will only be a memory.

Because Jake spills cereal, fruit and crackers. He drops his sippy-cup onto the floor creating little speckles of milk that spray across the hardwood, inviting dirt he has tracked in, to cling and accumulate. He takes at least a pinch of soil out of the kitchen garden planter on the porch, and brings it inside with him every time he enters the back door, and he dribbles pebbles and tan bark from his hands, his shoes and his pockets. He has fine layers of grit on him because he sifts rocks from dirt with the patience and endurance of an archaeologist on the verge of a great find. He gets dirty every day.

So as much as I love the feel of treading across cool ceramic tile, it also reminds me that Jake isn't home. And as much as I know he loves camp, I will be thrilled to kiss the top of his little puppy-in-the-rain smelling head.

And while the reprieve from sweeping has been lovely, it will be wonderful to have myBoy and his sand-filled shoes home.

Not Running Away, Just Running

2011-06-15T16:50:00.000-07:00

My back hurts. A lot. And my makeup is smeared and my ankle hurts, and my wrist is a little twisted. I am sort of a wreck, but I would chop off a toe with a dull blade if that was also necessary to keep my son safe; a little injury is worth it.. it's always worth it. I will feel better in a few hours, after the adrenaline surge dies down and the kink in my back is ironed out with an anti-inflammatory.

Jake ran away from me in a busy parking lot 20 minutes ago and despite that diagnosis of cerebral palsy ataxia, he moved so quickly that the only way to get him back was to leap and tackle him.. on the asphalt, in the middle of a moving car line at the pick-up where his sister had camp today.

I got a hold of him, straightened myself up and walked on the campus, my hand firmly around his forearm, no longer bothering with his hand at all. A very kind counselor who could not possibly have been more that 18 noticed me, and must have known that something was up by my demeanor. When she asked if I had a question, I broke into tears and said "My son just escaped my grasp in the parking lot and got away from me. He's fine, but I need to get it together before my daughter sees me." She graciously said, "Why don't I go get her for you and you can take a minute."

Jake and I sat there on the edge of the little playground, me firmly holding a twisted knot of the back of his shirt, his hands sifting through the tan bark. I wiped my tears, assessed my physical damage, pledged not to be angry with my son, and took a deep breath.

Lucy bounded out with the sweet counselor who brushed away any of my apologies as completely unnecessary, and as we left, Lucy said, "Mom, I want to play on the play structure." and headed two feet away from me. I reminded her that she was headed to a birthday party and she happily came next to me and we all got into the car.

Then I had this flash, not of how frustrated I am, or irritated, or disappointed that such a simple errand could not be completed without major incident.. but a flash of how my son must be having all of those feelings and more. When he "ran away," he probably just wanted to play in the tanbark at the edge of the parking lot. Sitting right near our car was a little slice of what my son must think is paradise. That big fresh pile of tanbark just waiting to be spread abut the flower beds at this beautiful elementary school campus, siren calling him, and he probably just wanted to put his little man-hands through every piece of it.

He wasn't necessarily running away, he could have just been running. And how could I possibly know the difference?

Can you imagine having all of the desire to do something as simple as putting your hands in tan bark, and being unable to do it because you just couldn't tell anyone that's what you wanted to do? Lucy asked to play on the play structure, turned away from me, and I certainly didn't lunge after her.

But, of course, she came back to me. And I know that she would do the same thing in a parking lot, or an airport, or Disneyland. She comes back to me, and before she leaves, she looks both ways to make sure she will be safe. I can count on that. I taught her, and now she knows it, and that's the end of that, and anything other than that is her being naughty, but even at her naughtiest she is always safe.

I remember having a discussion with one of Jake's teachers when he was at his previous school where they had proudly put "I want to go to the bathroom." push-talkers near the door frames of both exits of the classroom, so the children could press the button on their way out the door. I thought it was a great idea, except for the part where Jake is not allowed to get up out of his seat during work time. How could he ever communicate a desire to go to the bathroom if the icon is across the room? How humiliating, how degrading.

Does he live his life with the hope that I will be there to intuit his needs? That his next caretaker during the day will be able to understand his subtle facial expressions and vocalizations. Here I was, so worried about Jake being injured this afternoon, but I'm not sure that it isn't perhaps more painful for him living every day, just hoping the people around him will take a moment longer try to understand what he wants, where he wants to be.

I am crushed to think of how many times I have been impatient with him, wishing he would just do one single thing I asked him to do, when he is probably wondering if today will be the one day that he gets to choose to play on the play structure, linger. But I can't let go of his arm; I just don't know that what we have tried to teach has stuck in there.

And how will my son ever prove to me that he will come back if I can never trust him enough to let him leave?

****

This post was an editor's pick today at OpenSalon.com

He Handed Me a Tomato.

2011-06-01T03:14:00.000-07:00

I struggled to make the story more compelling to the parent of one of my daughter’s friends. He’s a kind man with two typical children, who asked me about Jake without any pity in his voice. (I hear that voice quite often, and it’s something I have come to understand, but still find hard to get over.) His was more of a genuine query about a child who isn’t often the “plus-one sibling” at the 5 year old birthday jumpy house affairs.

“I handed him a piece of tomato, and asked him not to drop it on the ground. I told him that if he did not want the tomato he could just hand it back to me.” I continued, feeling again that warm sensation of pride in my son, “He stopped, pivoted slightly and handed me the tomato, crossing mid-line, uh, going across his body, to give it back to me." The man smiled, and nodded his head, and looked like he really wanted to understand the significance of what I was saying.

And of course he couldn’t really understand why I stood there in the kitchen with a tomato in my hand, and tears in my eyes. Such a simple task, I’m surprised he had the patience for me to finish telling the story at all. But I know the importance, because for what I think is the first time in my son’s 10.5 year-old life, he followed a direction, in the moment, and made a physical connection with me, purposefully, and he had nothing to gain from his actions. We’ve come close, with a sippy-cup dropped into my hand, or rolled down the counter near me when he wanted more to drink, but this time he really put something into my palm, and he had to make a choice to do it… I wasn’t on the way, and there was no reward, no benefit at all. That unwanted tomato could just as easily have been dropped to the ground. He was even headed towards the back door to play outside, a preferred activity for just about any child, but he stopped and gave me back the piece of tomato, calmly and politely.

It is amazing how much joy we have watching him continue to learn and make progress in these seemingly benign ways; these subtle acts that he keeps adding to his repertoire. It leads us to believe that he is processing information in new ways, able to parse the language and make all the “holes line up.” And if he can hear and process and act on what he sees or hears, that means there is more possibility for him to be able to communicate his needs to us. And better communication means a more connected boy, and a life with less challenges. Like most parents, watching our children succeed is a fantastic double whammy; we get to see our children be happy, and we get to know that the hard work of raising children is paying off.

What I didn’t tell the daddy in the park were the next things that went through my mind. Because even as I stood there in the kitchen, the glow of pure joy, excitement and pride washing over me, pressing me to call every grandparent, those next thoughts went something like, “Oh my God, we are totally screwed.” After I exhaled the joy, I was filled with a paralyzing fear that we are never going to catch up, and there is so much more work to do. He handed me a stupid tomato, it’s not like he got the top score in his math class, or figured out a better way to extract rare earth elements. Jake’s home-aide squeezed me and let me know how cool it was to witness the new skill, and all I could wonder is if he would ever have enough self-help skills to be anything close to independent. Is he destined to rely on other people for every part of his life? I mourned that we have missed the window of opportunity. The plasticity disappearing in his brain, those neural pathways becoming fixed, fearing that moments like these will be farther and farther apart, and there are so many things he still cannot do. As a ten-year old boy I should not be cheering on the simple act of handing me a tomato. He should be skateboarding, and climbing trees in his friend’s back yard. He should be testing the boundaries, and reading Harry Potter or breaking his right arm as he barrel-asses down the slopes on his new snowboard. He should be playing too much Wii, and reading after I’ve told him to go to sleep. He should be asking for a raise in his allowance, and trying to convince his grandparents that the iPad2 is a perfect gift to give a graduating fifth grader.He should be doing so many more things at this age, and there I am pathetically sniffling over a piece of juicy red tomato.

Which leads naturally to the third emotions that rang clearly through my brain. First, pride and joy, then fear and sadness, and finally, guilt and shame. I immediately chided myself for comparing my son to some sort of norm; he is incomparable in most respects, to most other children in both deficit and strength. He shouldn’t be doing anything more or less than what he’s doing, and the fact that I let all of those things run through my head meant that I was not present for the child that was standing in my kitchen. My son is not any other child than the one before me, and how he learns and grows and interacts with the world is going to be different than every other child on the planet, autism or not. It’s shameful to dwell on what I thought parenting would be like, what my home would look like, how my children would act, and what they would do to pass the time, and I thought we had long since stopped comparing him to other children his age; it doesn’t do anyone any good to compare. I do not to indulge in the rat hole of "why me?" and try not to get side-tracked by the accompanying envy of lives that look easier, simpler, or more carefree. When we keep longing for a life that didn’t happen, or that won’t happen, we lose all those moments of the life we actually have. And I have a great life.

I tried my best to move my mind back to joy as Jake ran out the back door and I put the tomato in a shallow bowl for him.

While I sometimes can’t help noting the typical-kid milestones we miss, I am, for the most part, less troubled than I used to be. These days I am more focused on how I can help Jake become the happiest, healthiest child he can be, in the most supportive environment. How can we engage him in the activities we have determined make up the core of our family's value system? How can we make him feel safe and heard when he doesn't have a "voice" as others have. And I’m trying to strike the balance between having expectations for my son, and being unrealistic.

So maybe it’s not an amazing story for anyone else, but I know this is part of the joy in my life; I get to witness these small victories. I get to help Jake learn and watch him gain the kind of skills that most people never even notice. I get to be thankful for things like pincer grasp. And I know I will never take for granted his health, his ability to walk, his sneaky smile, or the one time he handed me a tomato.

****

This post was an editor's pick today at OpenSalon.com

Mothering: It's Never as Easy as It Looks

2011-05-08T23:26:00.000-07:00

I actually never thought mothering would be easy. I thought I would have a hard time getting pregnant (I didn't), and when I was pregnant, I worried a lot about having a child with special needs (I did).

I knew, from having been a precocious child (that's precocious, not precious!) that children could have smart-mouths and not sleep well. And from my teenage years, I recognized that children turn into young adults sooner than you think and might even sneak out of their parents' home, spend their 17th birthday across the border, and they might even water-down the creme de menthe in the liquor cabinet without their parents even knowing.

But I did think, for example, that my children would listen to me, and actually do something very, very close to what I asked, within a time frame that looked like they were following my directions. As much as I talked back and asked why, I am fairly certain that I did follow instructions, or at least I went to my room to be grounded. I thought there would be a lot more museums and going to the opera, and learning needlepoint, more library visits, trips to the beach and fishing, and I find myself pausing, in the face of things I don't like, or are hard, or not fun, and I ponder if I am being a good enough mom.

"If you are wondering if you are a good mom, you are, because bad moms never wonder."

That's my line to other moms. To my sister, to my friends, to strangers. I can say that to lots of other women, and comfort them when they feel like they are faltering, I know what good parenting looks like, and even when we make mistakes, it's mostly the trying hard that counts in parenting.

But it's harder than I thought it would be; much harder, and I can't always be settled with my own advice. I feel like I have not met their needs on most days, that I have been selfish. I lie awake thinking I didn't try hard enough, or that I used an unkind voice when I could have taken a breath. And I worry that my chances to "make up" are slipping away; Lucy will be five in a month and Jake is ten and half.

What I did not expect, what you can't see from the outside, is the gnawing inside that I would never, ever feel like I had done enough for my children. Is that what being a mother is? To have those thoughts of each child's temperature and stomach content and to constantly be discerning the cleanliness level of both their teeth and clothing. I am concerned about the radio, television, books and words that are on display in my home and in my car. I worry about how they are treating their friends, and which children are they befriending? And how are they communicating with others when I am not around to intuit their every need? Every choice I make considers their very existence.

It seems so much easier for other moms. They naturally make plans for spring break that include the science museum and a trip to the beach. They stop by the library on their way home from dance class. They enroll their children in violin lessons, piano lessons, and drum circles, and plan sleepover parties for six. Maybe I make it harder on myself because I have such amazing friends, and every thing each of them do, seems so fantastic that I want to do all of those things, even if those activities are coming from three or four or five moms, and not just one. It may be unrealistic, but not undesirable.

I would love to have a day when I knew that I had done my best, and that was the best that could be done.

*****

There are some other things that are so much easier than I imagined, so much better, warmer, brighter, meaningful and important. I hesitate to call them out because I don't want to mock them, or make light of their gravity, but they are mostly the things I never knew about at all before I became their mother.

Missing my first-born when an emergency surgery kept me from him when he was only 30 days old. The ache I felt in that hospital room without him was the most unbearable pain I could ever imagine, no wound or slice, or broken bone can compare to that hollow that could only be filled by that tiny boy. And the wholeness and lightness I felt when I held him again was like no other joy I had ever had.

My daughter asks me to sing her to sleep so she can 'hear me in her dreams' and holds my hand in the car while I am driving so we can be close before she leaves me for the day. My son has friends at school, and has developed meaningful relationships all on his own using his great sense of humor and his joi de vivre.

I never could have guessed how wonderful it would be to sleep next to my babies, or how watching them sleep could make me weep

...and I didn't know how easy it would be to fall in love, so deeply, so permanently, and so completely.

Thank you to my husband and my children for helping to shape so much of who I am. And to all of the women who support me, pave the way, comfort me and praise me, I am forever grateful.

****

This post was an editor's pick today at OpenSalon.com

Signs of Autism

2011-04-12T16:23:00.000-07:00

In our family, we make medical decisions using science, facts, and data, and we believe in keeping our children healthy, so we vaccinate. I have never thought that vaccines caused my son to be autistic.

Except for that one time.

Lucy was a perfect baby, not that she never cried, or blew out a diaper, but she held her perfect little round head up, and rolled over on time, and she just looked. so. perfect.

When she was four months old I took her for her routine vaccinations. She was in the 90th percentile for height, the 75th for weight..right on track, and the nurse gave her 3 shots: HIB, Pneumococcal Prevnar 7, and inactivated poliovirus vaccine (IPV) She got little round bandages stuck to her little chubby leg. She scrunched up her face to cry and I nursed her a bit, and tucked her back into her little outfit, and put her in her little car seat where she slept for two hours.

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.

Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.

In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child, my screaming child.

I called the front desk of the large-ish medical foundation, and put an urgent message in to the doctor I had just seen. I made sure the nurse wrote down "adverse response to vaccines."

The doctor called me back within 10 minutes, heard the sound of my voice, and Lucy screaming in my arms and told me to rush right back in. The short ride to the doctor's office is only longer when I am carrying my children in utero, and my contractions are three minutes apart.

Lucy was calm in her car seat "bucket" on the way to the office, but that was no consolation to me. We have spent years driving our son's autism around trying to calm him down enough to sleep. A kid that is quiet in the car doesn't mean anything. When he was younger, we replaced the tires almost as often as we changed the oil and that kid with autism still screamed when the car stopped.

We were ushered into an exam room, and I left Lucy in her car seat until the doctor came in just a few minutes later. The doctor looked calm, collected and very worried all at the same time. She quietly said, "Show me exactly what's happening."

Lucy squirmed and whimpered when I pulled her out of her precious floral-patterned bucket. I laid her on my lap then picked her up and brought her close to nurse. She started screaming and thrashing. Her face turned all red. She was not the same baby that the doctor had seen a few hours before. The doctor helped Lucy try to latch on, to no avail. I got tears in my eyes.

Oh my God. Oh my God. It's all true: Vaccines cause autism. Jenny McCarthy, Age of Autism, Green the Vaccines, Generation Rescue.. they are all right, somehow, with no scientific evidence, and I just gave my precious baby all of those shots. I broke the baby.

I sat there, sniffling and holding my crying child, pulling her closer and closer to me, afraid now that I would drop her and make things even worse.

The doctor took a step back, sat on the rolling swivel stool that all kids love to play on, and moved herself across the floor towards me again. She very gently took my left hand and moved it slightly. I was still cradling Lucy's head in the crook of my left arm.

Lucy turned her head towards my breast and started to nurse. Her body was still a little squirmy, then she calmed down and sucked away, trying to fill her tiny stomach up.

"You were pinching her thigh- where she got the shots. You were just holding her leg, and pressing right where she got the shot." I started to cry, not a lot, just enough to release all of that terror that had built up." I think you are okay now --that she's okay. Call me later if...just call and leave a message and let me know how things go the rest of the day. And come back in if you think it was any thing else."

"You know I'm not a paranoid mom? You know I wouldn't have called, but Jake's autism, and, and, we had the vaccines and, and, I just feel so stupid."

"Don't feel stupid. I knew exactly what you were thinking, and I know you're not a paranoid mom. You're not crazy. It's okay. All of that flashed in my head too; but now we know. So, let's not pinch the baby's leg any more and everything should be fine. Sit awhile and feed her. Take a deep breath." And with that, she left the room.

My baby girl does not have autism. One day, after her vaccines, she screamed a lot when I squished her little leg.

I can't imagine how I would feel if Jake had been a "typically developing child" as some parents of children with autism believe their child was; losing language and the ability to communicate their needs. Jake was different from the beginning, the very, very, first-day beginning; at least I thought he was. So I have never felt like some thing was taken away, or that he was somehow damaged. He has always been a whole, healthy, child whose brain worked differently. But that feeling of thinking you've had something taken away must be such a painful experience for those parents; the parents whose recollections are that their child did change overnight, and stayed changed and not because of a little boo-boo on a chubby baby leg. But I know that's just not how it happened with my son and his autism. I'm guessing, in our case, as in many or even most other families, this is a genetic issue which will be brought to light in some number of years down the road. Could there be an environmental insult? Maybe, probably. I'm sure it's complicated. That's why I'm waiting for the data before I go blaming anything.

What worries me is that I am a person who does believe in science, who has weighed the whole of evidence against the righteous hand of anecdote, and I have settled firmly on the side of scientific proof, not only for the health and welfare of my own children, but for society at large. If I could be swayed in a moment of dismay because of all of the "Tabloid Medicine" that abounds, what happens with someone who gives the pseudo, or non-science, equal weight? Those people who think that anecdote is somehow equal to a properly done scientific study? If all of that can go running through my head pell-mell given my daily practice of relying on data in my decision making, then what happens in those other families? I was so quick to turn to the anecdote and to rumor in that moment, and I'm someone who has access to good information. But good information can be harder to find. It's difficult to compete with celebrity endorsers and personal experience. It is a hard sell when all you have are numbers, and black and white pages of scientific jargon.

*****

It's time for us to all turn towards science. I'm not saying we should abandon completely the spiritual, or the intuitive parts of our nature, because I am aware that some things cannot be fully explained by science, and most moms know their kid better than anyone else ever will. Don't throw out everything you have learned through life experience, but, in general, as a rule, why don't we all trust the science just a little bit more, and guess a little bit less. And those of you who do vaccinate, or use medications, or believe in the scientific method, let's start talking about it. Let's not keep our mouths shut when people start bragging about how ossicilium cured their cold in "just 7-10 days", or that the echinacea they took last year, prevented them from getting the flu last month.

And perhaps we should start insisting that the science in the news be reported by someone with even a modicum of understanding of science. If that's all too much, then at the very least, let's all decide, right now, that celebrities will have no part in the decision-making process when it comes to making choices for our health, and our childrens' health.

Label Me Capable

2011-03-25T03:00:00.000-07:00

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed", I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

A Very Belated Thank You

2011-03-22T03:00:00.000-07:00

I am a very grateful person. Every morning, every evening, and many, many times throughout the day I am thankful for my friends and family. When I unlock my door, not only am I thankful that my key works, but that I have a door to open.

When I am standing in the midst of the debris and various body fluids that seem to accompany parenting, and the additional food on the floor that is brought on by a child with disabilities, I am thankful that my children are healthy, and with me. I am so grateful when my husband, who has somehow managed to put up with me for more than 15 years, walks through that door again, and helps me get our life cleaned up, and set up for our next adventure. I say, many, many, times a day to myself: I have a great life--and I actually mean it.

I try to tell the people in my life that I love them, that I need them, and when I find their jokes funny. I almost always write a thank you note.. oh yes... I really do. I write them.

and then they sit.. in a box, or in a pile of unstamped mail, in between the seats of my car. They get lost in the shuffle of my life. They used to get to the people I want to thank. I even used to send cards to people randomly just to let them know that I care.

So, for all of you who are waiting on that thank you card.. for my dearest friends who do too much, and for the gracious hostesses who have served me well, and those that have gifted my children all of the amazing things we have around our house... I'm working on it.

If you get a note in the mail, or on your porch, or in your child's little cubby, and it's dated 2010, or even 2009, please know that I've been thankful for you that whole time. All of those days between you adding joy or brightness to my day, or saving my ass, I am so grateful for you, and for you, and you, and especially you.

I hope you know that.

Why the Sad Face?

2011-03-09T11:36:00.000-08:00

I hate it when my kids cry. I hate it even more when it's that fake cry that my daughter has mastered--you know the one where, if you tickle her just a little bit she bursts into laughter, or if you say the word "candy," she stops the faux water works (faux canalisation d'eau?) The worst sound may be my son's silent moan with tears, but I haven't heard that in a while...a long blessed while.

But we have had some tears this week.

Yesterday Lucy sort of just lost it on the way to school. She had eaten a balanced breakfast, had enough sleep, and because she was actually being a good listener (and mommy had enough sleep the night before too), we had not had any of the usual morning squabbling over shoes-on, hair brushing etc. So we get out the door, into the car and began our race to the freeway (with the cruise control at the speed limit). She started to cry.

Looking into the rear view mirror I was so afraid it was going to be a faker, whiny, brat, cry baby that I steeled myself for the barrage of mean things I would need to force back down my throat, because, after all she is only four, and still learning how to ask for what she needs.

What I saw, instead of a bratty little monster, was the saddest little girl I've ever seen. Little tears slipping down her face, she asked if I could pick her up from school before nap time.

"I'm just going to miss you a lot today Mama, and I feel like I wasn't close with you at all yesterday, or on the weekend when I was playing, and I am probably going to be sad a lot today and miss you so much. So can you please pick me up really, really, early?"

"Well, Bug, you have "Cheery Chipmunks" dance lessons at school after class, so it's a late day for you. Are you sure you want to miss Cheery Chipmunks?"

"Oh this is too hard. I want YOU mama. I like to dance, but I just," and she broke down some more, "want you."

And so I made a u-turn at the light at the top of the hill and told her that she was going to stay home with me for the day.

If there was ever a little face that said "I need a mental health day" that was the face.

It wasn't easy for me to let go of my messy house that needs cleaning, or the bills that need to be paid, or the myriad essays I need to finish, or the calls I need to return, but it would have been a lot harder to say goodbye to that little girl at the door of a preschool.

She's not going to need me much at all pretty soon; I knew I would leave home and live far away by the time I was about 8. She can already happily stay at a sleep over for 24 hours without more than a 5 minute check in on the phone.

As much as I love how independent and strong she is growing, I know that part of the reason she is okay when I'm not around, is because she knows I really am here. I tend to think that if we don't give our kids that feeling like they know how very deeply they are loved...every day, well, I think some of those kids stick around too long waiting to hear it. I know there are lots of other reasons why people stay near their family, or fly the coop, but I want Lucy to be so confident that she is loved and supported, that she can leave, and forget to wave goodbye.

And yesterday, that meant shopping for some new jeans, going to a movie, meeting Daddy for lunch, snuggling for some nap time, and pulling out the oil paints to finish some art work for the grandparents. It was a great day, for both of us.

And today? She's staying late at school for soccer... no problem.