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: 

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

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

Summertime and the Living is...

easy? hard? scattered.

Things are scattered. I think I have more time, but there are more children around, but Lucy has been at camp in the mornings, and at a play date nearly every afternoon, so really there are less, but Jake requires constant monitoring, so I am sort of trapped in the kitchen dining area of my house, or the back yard, so I can't get anything done. Oh, and I feel guilty for not playing with him or taking him any exciting places.

Everything seems to be breaking around here, so I've been running around buying parts, or taking things apart and looking at online schematics, and trying to figure out whether it is better to buy new or fix the old. I was able to fix the washing machine, which made me feel pretty awesome and also pretty annoyed that I spent more than $200 paying someone to fix the exact same problem when it broke last September. The dishwasher is no longer making that terrible noise after I took the entire thing apart and cleaned every tiny part of every tiny part. When someone says "They don't make 'em like they used to." I will now nod my head in absolute agreement.

I have a lot of goals for myself this summer, but I just can't seem to finish anything. Which leads me to one of my first goals of course... I need to let some things go, including giving myself a hard time about everything.

Here are some other things I am going to let go of this summer:

• other emotional baggage
• old cookbooks
• ratty t-shirts, even if I think I should "keep them for painting"
• baby toys, unless Jake really, really likes them
• towels we have taken, almost always by accident, from Super8, the gym, and various hospitals. They are thin and nasty and never ever get soft.
• paperwork that does not matter. Seriously, do I need all of those old phone bills? WTF?
• clothing that does not look good on me
• shoes that do not fit
• beauty products that are past their expiration 
• luggage that is beyond repair
• cracked laundry baskets
• pens that don't work
• mugs I do not like

and that is just the beginning, but I am trying to make small goals and meet them rather than say "I will clean everything out of my house." That makes me feel defeated when I can't get it done.

I need our house and our life to make more sense than it does now. If it is this hard for me to accomplish great things here, I can't imagine how much harder it must be for Jake who has difficulty processing. He works so much better in an orderly environment, and I have more patience for sitting and teaching when our life isn't strewn about my field of vision. Lucy will benefit too, she is trying to figure out how to prioritize things in her world, and learning habits which will follow her for a long time.  If I can teach her now how to have a place for things, how to make order out of chaos, she will go farther and do more in life than I have.

Jake goes to summer school right after the 4th of July holiday, and Lucy has at least two more weeks of camp, so I will have some quiet sorting time when they are off being crazy kids, but it isn't too much longer until we need to prep for our cross-country trip. I have already begun the lists for that.

and by the way, making lists is a great way to avoid doing work. I am an expert.