27 October, 2011

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 

21 October, 2011

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. 

18 October, 2011


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.

05 October, 2011

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 

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