I'm the "Mom Next Door"

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

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

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

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.

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

Parenting in the Park

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?

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.

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

Venting Frustration: Mental Health

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

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

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?

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

He Handed Me a Tomato.

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.

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