Blessings

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

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

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

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

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

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

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

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!

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?

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"

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.

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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.

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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