I Don't Hate Autism, I Hate Migraines.

Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.

myGirl at 7

She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.

We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. 

*** 

I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.

Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines.

Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? 

myBoy at 7

It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to try to help him, feeling like I was failing when I had to take a break and pass his care to my husband. He was at least seven before we had a handle on it.

And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.

Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had.

He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. 

***

Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today."  I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. 

But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time.  I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. 

I don't hate autism. I hate migraines.

Autistics Speaking Day

For the most part, most people, would say that my son is non-verbal. That is a clinical diagnosis. I use the term when I am explaining his needs to a caretaker or an education professional. I hate saying it though, not in the "we should use the term pre-verbal instead of non-verbal," but more in the way of, "I can't believe that people don't actively recognize that there are many, many ways to communicate."

Jake has a lot to 'say.' He has opinions, and finds things funny. He has preferences. He shows varying amounts of affection depending on who you are. He wants to go some places and not others, and can tell by where we are driving if we are getting close to camp, or home, or the Lake House, or Tahoe. He is clear about when he is done with a situation. And he has all of this without being "verbal."

The more we interact with Jake as if he does have something to say, to no one's surprise, he does have something to say! Treating him with that respect, is uncomfortable for some people. Without the feedback that he has heard you and with no verbal response to gauge when they should begin the next bit of story or query,  even well-intentioned people can feel like they are dangling there, unsure of how to move the conversation. Those people who do address him directly in conversation, however rare that is, even those conscientious people wait for an answer from him. They, we, the world, talks at him. And then they talk to me about him, in front of him.

Some of it is just going to happen because of logistics, or pressing need, or the fact that he is still a young boy. Some of it happens in the exact same way with my daughter who is filled with words that spill comfortably out of her mouth. Talking about your children in front of them happens, and giving an answer for your kid probably happens more than it should. Truly we are just an impatient society, always ready to jump to the next thing; get the answer, move on.

But we can "listen" for Jake's responses if we pay attention, and I should do a better job of explaining some of the ways he communicates, at the very least, so others can benefit from his humor.

We've never done this before, so I am still learning. Certainly my feelings have changed over the years from just wanting my son to talk, and thinking that saying words aloud was the end game.  Now I understand that the really important thing is that Jake be able to communicate his needs. It doesn't matter how he does it. Maybe there will be a device, like an iPad, that helps him string words together so we can easily read them. Maybe he will use more gestures. Regardless, I no longer think that there is only one way to "talk" and I realize that really listening requires a more open mind.

***

Last night was Halloween, and we had planned to trick-or-treat through the neighborhood with a group of friends with Jake walking a little, then using his wheelchair. We would be accompanied by his aide. Knowing that he gets tired earlier than a lot of kids, we already had a built-in escape plan for Jake, with an early departure via car should he want to go home with his aide.

We got the kids ready in their costumes, and as I was gathering the rest of the items we would need, flashlights, bottles of water, extra bag, lightweight jackets, Jake whooped once then ran down the stairs, in full costume, and got into his bed.

Face down in the pillows I went to talk to him. I explained that he would not be in trouble, and no one would be mad if he decided not to go out house to house. I waited, sitting there, then offered that if he did want to go, he needed to get up with me now because we had to meet people, and that the decision was his. Perched on the edge of his bed, I waited, watching his back rise and fall calmly as he breathed.

All at once he sat up in bed, so precious in his Star Wars get-up, and looked at my face for a moment. Then he flopped back down on the bed and buried his head under the pillow.

Okay. Got it. No trick-or-treating.

As his sister and I left the house his aide was helping him into more comfortable sleeping attire, and I heard a familiar, happy squeee and the sound of the headboard hitting the wall as his almost teenager body slammed back onto the mattress. Reports are that he was sound asleep within ten minutes.

In the past I would have a) gotten him out of bed and walked him to the car, 'encouraging' him to participate in this annual ritual that American children cherish, or b) allowed him to stay at home, but walked away feeling like I was somehow cheating him by not including him in the outing, and no matter what I would have c) felt guilty that I was forcing him to do something, or felt guilty for abandoning him (and ultimately making my night easier, because most of the world is really not ADA accessible, so wheelchairs and Halloween do not go together very well.) In the past, I would have decided what Jake would be doing based on what I felt was the best decision, calculating everything from my point of view.

Instead, I left the house confident that he made the decision. I asked him, I double checked, I waited for an answer. He told me clearly what he wanted to do...and then I honored his wishes without attaching any frustration, or blame, or guilt, or sadness.

His communication was very clear. He didn't need to spew a soliloquy for me to hear him, I just had to know that he had something to say.

Autistics Speaking Day

A Cup of Kindness

My dry cleaner retired.

I walked in last week, and felt like someone was "gaslighting" me, because instead of the usual cheerful couple behind the counter, there was an entirely different cheerful couple that is about the same age. And yet there they were doing the same things that My Dry Cleaner and his wife used to do; she working elegantly at the sewing machine, and the gentleman leaping from behind the racks and hangers to greet me and take my dirty things.

I stood agape. Like I was in a bad sitcom, I actually shook my head in disbelief.  Then I tried not to cry as the new proprietor told me again that the previous owners had retired. They were gone. And they had been gone for several weeks, which I believed, because I turned in enough shirts that I clearly had not been there since last month.

I paid for my cleaning, and picked up my slip for the clothes I left behind. They have a new machine that just spits out a receipt after he types in how many items I have. No more asking for my phone number, no more handwritten notes on the flimsy little triplicate pages-which I always lost before I could use them to get my clothes out of hock.

Back in my car, I  laid my head on the steering wheel and unraveled. I cried such big tears that I heaved and got that little shudder the way crying children do when they feel lost, and alone. And maybe that's because that's how I felt, lost and alone.

I had no idea that my simple exchanges with my dry cleaner were so woven into my life. He and his wife had become a touchstone, a grounding point. He always asked how my children were doing, and called my Jenny, when no one else does. He asked about our travel plans for holidays, and remembered where we had been. He bought me coffee once, on a day when the world seemed impossibly sad. He asked about my marriage, my family. He provided counsel and humor, and kindness.

He is a good man, and I will miss having him on my team.

We never know who our allies will be, who will be the people we can count on to listen, or care, or pitch in. One would think that those people who were your friends in college, or maybe the exuberant couples who stood with you at your wedding, maybe they would be be your closest, and most relied upon friends. But some of those relationships fade, or are pulled apart by distance. Even family can't be there at every turn.

And so some friendships come when we don't expect them, people step in as sort of heroes in their own way. A motherly neighbor might be the one who comes to sit on your couch in the middle of the night to watch over of your special needs kid, while you head to the hospital to deliver your second child. It's possible that the wonderful waitress at the corner burger joint, will offer to hold that brand new baby as you struggle into the small bathroom with your other child, the one who has developed a severe sensory aversion to public restrooms and all of their echoiness. And you will accept her help with a dawning revelation that you will never again have enough hands to manage the task of parenting your children alone.

In your weariness you may encounter a small oasis. The woman at the Mediterranean cafe will recognize your tired voice when you call to place an order, and when she sees you pull in to the full parking lot she'll step out the door and bring your food to your window. She'll peer in sweetly at your precious children, and you will thank God that this woman understood how long it would take, and how hard it would be, to safely get your children in and out of the car on that busy street. She will put in an extra piece of baklava for you.

Your dry cleaner will buy you coffee.

If I am lucky, I will continue to find these people as we venture on, and they will fill in, mending the holes in the fabric that make up our life. I will rely on them without knowing it at the time.

I can only hope that I have been gracious enough, thankful enough in the moment, that they do not regret their kindnesses, because I will always be grateful.

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.

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.

Jump Start

earlier this morning...

Most of you would not be surprised to know that I have a lot to say. A LOT to say, but lately I think I have so much to say that I can’t get anything out, which is extremely frustrating because my mind is getting very full.

Well, apparently it just takes a little jump-start, because I am so upset right now I am shaking. And when I am this upset, I feel the need to write.

I was just in a store, and a little boy, not even three, walked right outside and onto the street. He opened the front door and walked out onto one of the busiest corners in our downtown. I caught what was happening just as I got to the register, and watched as the very sweet cashier, who is probably not older than 20, raced outside. I knew exactly what she was doing without even seeing what she was rushing after.  I guessed it was the little boy because I had already brought him back to his mother three times in the ten minutes I had been in the store.

Twice I turned him around and said "Go back to Momma.” while nudging him in the right direction, since I could see her from where I was. And the third time I actually took him by the hand and walked him back to her. She never looked up from what she was doing when I brought him back. Kids might wander a bit down the aisle you're on, but he was so sad and looking for her, "Momma, Maaaaaaamaaaaaa?", and so short he couldn't find her in the maze of boxes and displays.

When the cashier brought the little boy through the door I thanked her profusely. She smiled and I took the little boy by the hand and marched to the back of the store to his mother. She picked him up this time, but didn't say anything to me.

Life is hard. For a lot of people, life is very hard, so I am not going to judge the woman too harshly because Lord only knows what has happened thus far in her life, but based on her smooth appearance and lack of tear-stained cheeks, and her desire to look at Christmas ornaments, I am guessing not much tragedy had befallen her this morning. Her other child was at one of the display tables with a bag of candy from the store ripped open in front of her.

I told the mom that her son had gotten outside and that the young cashier had chased after him down the street. She just looked at him and said “Why did you go outside?” and that was it...I was so surprised by her lack of concern, that I started to think maybe I was making a bigger deal out of it than I should, so I just said, “I thought you’d want to know because he is strong enough now, to open up a heavy store door and get outside by himself. Maybe that’s a new skill?” She said nothing to me, so I turned around and walked back to the cashier.

I paid for my items and realized I was very upset. I was trying to figure out all of the emotion I was having. I thanked the cashier about 60 million more times... for paying attention, for doing more than her job, for making sure that woman didn’t have anything horrible happen to her today, for saving that boy’s life, because surely with the parking garage and the giant trucks, and the busy, busy light with a turn-right-on-the-green-arrow light, and the boy's lack of safety awareness, he would have been hurt in a matter of minutes. The young lady was so gracious, just saying that she didn’t think he should be out there on his own. She told me to have a good day, and gave me my bag. My hand was shaking.

I realized I was very angry. Sweaty palms, gonna lose it, shaking, sick to my stomach, angry.

Watching my son is a full-time job at home and in public. Spraining my wrist trying to keep ahold of his arm as I try to pay someone, wearing a backpack so I have more free hands, being fearful to go certain places because I’m not sure I will be able to keep track of him…resorting to his wheelchair because I am worried I will lose him….waiting years to take both of my children out together, waiting until Lucy was capable of following directions and walking without holding hands before I ventured to do things like lunch, or the grocery store, or the movies. Jake ripped my rotator cuff dropping to the ground when he was younger, and now we are working on walking nicely and holding hands...eventually walking next to me without holding hands. It is a goal at school. It's something we are trying very, very hard to master because it's very important that he stay with me, and we have the same expectation of our typical kid, because it's important that kids stay with their parents. Right?

and this lady just let her kid, her typical, able-to-talk, able-to-hear, knows-his-own name, walks-without-aide, child walk out of the store. He just walked out of the store, and it took someone bringing him back for her to notice he was missing.

I'm not one for saying "that's not fair." because no one promises us that life will be fair, or even, or equitable, or easy, but I found myself saying it anyway. 

It's not fair. It's not fair...I try so hard every single day not to be a burden to others, to make sure my children are not causing problems for any one else but me. Jake tries so hard to keep it together in stores. We leave restaurants when either kid is having a hard time, we leave stores and abandon carts when there is a meltdown. We do not lose our children in stores. Our family works hard every time we go out, the whole time, to do the right thing, and she, she just lets her kid all the way through an entire huge store and out the door....and doesn't even say thank you when he's found alive? 

**********

I am re-reading this 7 hours later, and I still have all those feelings, but another one has crept in...that feeling I get when I realize I am not being grateful. I wish sometimes my personality would allow for just appreciating that the child was safely returned to his mother, and not feel like I have a moral imperative to change the world and the way people think, or get them to think when they are obviously not thinking.

Who's Your Teacher?

This morning I was talking with my friend Pollyanna. We've known each other since our first kids were babies. Jake was less than 6 months old and her daughter was nearly 2 months old. I had specifically chosen a playgroup of first time moms with babies who were younger than Jake. I knew already that something was different about my son, and the longer we could "look normal" while I figured out what was wrong, the better. Of course the playgroup was all girls, and they all passed him by in a matter of months, but by that time I had somehow managed to rope in a few women to be my friends, in spite of my different, but beautiful boy. While I don't see all of those women now, I know that in addition to Pollyanna, I could probably call at least two of them right now and they would help me if they could. It was, for the most part, a great group of people.

So, of course our first children are all the same age, and should be going into the same grades, etc. When I was talking with Pollyanna, I had to ask what grade her daughter was going into. Perhaps if I were a better friend, I would know these things, but mostly, I realized, I should know because my son should be going into the same grade, or it should be close, maybe he should be in the grade above hers. I should be at least as accurate as to be within 2 years...and I had no idea; just couldn't come up with it without asking, or starting to do some math, or counting all of Jake's teachers, which would just put me in a dark place because I am still not over kindergarten.

And while my conversation was such a nice welcome home after so many days away from my community, my tribe, after I hung up I was melancholy. A piece of my heart, in spite of being so full of joy it could burst, was sad. This has nothing to do with Pollyanna, or either of her beautiful, talented children... in fact I should celebrate the problem I have... I will never need to worry about what grade Jake is going into ever again; as long as he stays at WunderSkool, it will never matter. He may change classrooms, and certainly, at eighteen or so he will switch to the adult program, but as long as he is a part of that program, it just won't matter. All that matters there is his development, his needs, his growth, his happiness; the things that are important.

So why the frowny face jennyalice?

Markers, milestones, certification, progress checks... they are those bits of childhood that made our parents proud, or got us grounded. The little slips of paper in the mail from the state, "Your child is gifted." or "Your child meets the state standards for reading." There was the "N" for "needs improvement" I received erroneously in second grade, right before spring break, which made me lose my sh*t so badly that I cried all the way home on the bus (having looked at my report card even though you weren't supposed to look at it before your parents did...). That little "N" made me so upset that my dad, who was somehow home, and not at work, drove me back to school so he could speak with my teacher who thankfully was still there. Those report cards, checking the list on the wall the week before school started to see who your teacher would be, the anticipation of a new desk...shopping for school supplies and back-to-school fashionable clothing purchases... I don't really need to worry about any of that for Jake. None of it.

I buy clothes in the fall because he normally has grown so much over the summer it's a necessity. I clean out his backpack and lunch box, because they are filthy, but he's been using the same backpack and lunch box since I put him on that little yellow short bus 7 years ago. He will go to the same classroom, at the same school, for a very long time, and he can't even tell me if he has apprehension about the one new thing he'll have tomorrow... the bus driver.

I'm not grieving really. I'm not feeling all that left out. I just noticed. I noticed that we are different at our house, again. Even in the simplest ways, our house will continue to run differently than other houses with kids the same age. And while we will go through many of these little things with Jake's little sister, we aren't racing to Target today to get Jake a pencil case, and some wide-ruled paper.

Shame

We are dealing with some "stuff" with Jake right now. It is overwhelming my life emotionally and stealing all of my time and energy.

I want to talk about it here because I think it could help other families to see the struggles we are going through. Over the years when I have talked about major hurdles, like sleep deprivation or medication or lack of childcare, I have always received emails from people who felt like maybe they were going to be okay after hearing about us figuring something out, or from readers who felt less alone because they were experiencing the same type of grief, or frustration.

but I also don't want to talk, at all, about any of it, because I have such great shame.

When you have a special needs kid you begin the race of parenting with one hand tied behind your back, no map of the course, and a delayed start. There are no books which have been able to help me parent my particular child. They have all been too cheesy, or too sad, or too assuming, except perhaps My Baby Rides the Short Bus.

And our families sure didn't have any training on how to "deal with this kid who is quirky and walks funny". The struggles my parents faced with me were more like, "How do we tame that sass mouth?" and "When is she leaving for college?". And Descartes, it appears, was perfect growing up, never causing trouble or making messes that weren't precious, and he certainly didn't sneak out of the house on his 16th birthday and take his new car out for a spin. So as supportive as our family is, they don't really know what to do either.

Which means we basically make it up, or look ahead on the trail for other families who have done some of this before. We know though, really, that parenting our kids is our job, with the support of school and community, but really this stuff is under our purview.  And while Descartes is a lovely, involved Daddy, I am mostly the at-home person who is front line, so I feel pretty responsible for the health, welfare and development of both of my kids, and I feel horrible when I can't get it right, and right now I can't get it right. I am not even close.

I was raised with three main precepts:

1. 
   

   We will always love you; although we may not always like what you've done, we will always love you.

2. 
   

   Jennyalice, you have been taught right from wrong, now judge yourself accordingly.

3. 
   

   Well, Jennyalice, as long as you did your best, whatever the outcome is fine. You did your absolute best, didn't you?

And that last one is what gets me every time because I can always, always try harder, do better. ALWAYS. There has not been a moment in my life when I could not have done something better. I could have planned it better. I could have executed better, or faster, or more precisely. I could have been calmer, or more emphatic. I could have been more eloquent, taken on a little bit more, recycled, bought the less expensive one, ridden my bike, called ahead, mapped it out, ironed it, sewed it in a straighter line with stronger thread. I could have cleaned it up right then, or never let it get that way in the first place. I could have thanked someone at the time. I could have apologized, or even better, not antagonized someone into an argument. I could have been patient... I should have been patient, or closed my mouth or thought for just a moment before I ever uttered a word. I should have proofread it all one more time before I turned it in.

I cannot think of anything that I have done that was my absolute best. And most of the time I just live with that gnawing feeling that I am not quite living up to my potential, and I am fine, but when it comes to raising Jake, it is like the wind gets knocked out of me because I know I have not tried hard enough. I know. I know. I know. 

and I know because I can name things I haven't tried. I have boxes and books and files and charts and half written blog posts of things that have not been tried, or they were tried and abandoned, and this "stuff" we are going through with Jake right now, I know I could be trying harder. I know there are things I should have done already.  I haven't read any of the books I bought on the subject, or taken much of the good advice offered by very close friends.

I am just so ashamed that I let it all get this far, and sad and I feel like I have failed my son, and you know what else? I'm tired.

And while I know that we will get through this seemingly increasingly-steep part of the course, I am just so frayed and ragged dealing with the mess, that I'm not sure when I am supposed to get it together to plan out the solution, and even if I do, will I be able to put it all into action, and convince everyone else?

Kodachrome

Jake as a little guy at Disneyland late at night

We used to spend a LOT of money developing pictures. Capturing Jake on film required expert photography skills combined with the fastest shutter speed and endless rolls of film. It took money,  patience and diligence and perseverance, and faith, and will, and cooperation and effort.

so little

At some point I lost all of those things. and I began to let go of the idea of ever having a "real" family photo. I stopped trying to take a picture of Jake doing normal every day activities. I saved my strength for holiday photos.

Then we got a digital camera, a nice one.

and we started all over again. And we figured out that it wasn't just about the latest technology, or spending the most money, or getting leg cramps, or making sure Jake's shirt was clean.

preschool graduation day

We have a child with autism. We have a child with autism and cerebral palsy, and some panic issues and some migraine issues and some sleep issues and God only knows what else. And one of his "issues", or skills, or (dis)abilities, is avoiding a camera lens, or at the very least he won't tolerate a camera with a person behind it. The reason we had a hard time getting a good picture of Jake wasn't really about us not trying hard enough, or not caring enough, it was just a part of having this special needs kid.

Lucy was still being talked about in weeks in this photo

and I cannot help it, it makes me sad. I want to not want that "beautiful family in white cotton sitting in a field" photo.  I want to not really care that there seems nothing suitable to frame and give a grandparent as a gift at the holidays... or the looming Mother's Day. I want to not notice other families' adorned tabletops and hallways, lined with school photos, each one a masterpiece, a moment in time framed and hung for all to see the missing tooth, the self-styled bangs, the galliwampus shirt collar.

We don't really have those moments. My sister is a photographer by trade, my husband has captured amazing pictures, and many of the rest of the family are prolific in our clicking so as to produce at least some good shots if only by the grace of statistics...and still we cannot capture him. When we do get a shot, it is never with a straight on look. I just do not ever get to really look at my own son. Not since he was an infant, when, as irony often deposits itself into my life, my son demanded constant eye contact or he would fuss and fuss; he was so intense, and I would just stare at him for hours.

Jake at Dream Machines

What I would give for just one hour with those eyes again. I tried this weekend when we went to the Dream Machines event on the coast, to capture him, and his joy. I sat beneath him, next to his wheelchair (which we used for most of the day since there was so much walking and possibility of getting run over by, oh, I don't know, A Monster Truck).
I told him I wanted to take his picture and he started to laugh, and put his hands out in front of him, so I put myself to the side and just put the camera near him, which was funnier to him, but harder for him to avoid.

Jake thinks I am hilarious

I realized another thing as I was clicking furiously, knowing that I would need to delete 80 or 100 photos for every one I found that was worth viewing. I realized that Descartes' younger sister hates to be photographed, and Descartes doesn't really like it all that much either. This is foreign to me, since I grew up in a family of narcissists (and I say that in the nicest way, my dear siblings). I don't remember ever being shy for a camera unless I was in a bathing suit, or wearing the fat suit of adulthood. We hammed it up, and leapt in front of each other and put on tin foil hats or dramatic big, poofy, curled hair just to be seen.

So perhaps there's another dynamic I hadn't thought of before, one that isn't so tragic and dramatic. Perhaps Jake just doesn't want his picture taken and is being a pain in the but like any kid who doesn't want to make a nice smile or stand still or wipe their face for a photo. Maybe he is just different than Lucy in a very normal way. She is a dancer, an orator; she poses, and waits for the shot. Maybe it's okay that he watches, and laughs, but keeps his distance from center stage.

You Gotta Know When to Hold 'em

Shannon posted today at BlogHer talking about the dissolution of the dynamic "Green the Vaccine" duo Jim Carrey and Jenny McCarthy. I am totally with Shannon, that while I am not on board with most anything Jenny McCarthy and her movement spout, I have no desire for any ill-will to befall either of them, (or really any person who is anti-vaccine, or really anyone for that matter). 

Shan's focus was more on the myth surrounding the divorce rate in families with special needs children; some say it is as high as 80%. Mull that one over eh?


She interviewed me for the post, and used an excerpt of my response to her query:


1) Are your child's special needs a factor in the state of your marriage?

2) for better or for worse?


and my answer is...

****

Yes, and while I feel that children change the direction of any marriage, having a special needs child changes the direction of everything in your life, and often.

I feel lucky because I got to figure out really early on that I married the right man, and that I want this marriage to last my lifetime. We have learned how to be a team, how to give each other space, how to argue while still taking care of some pretty big or stinky jobs.

I do think marriage is harder when you have a special needs kid. Just finding a babysitter to go to therapy can feel insurmountable, and where is the money for date night supposed to come from when all of your dollars seem to be going towards therapy or special shoes, or another stroller that's even bigger because your kid still can't walk? Everything is just a little bit harder, fixing dinner, bath time, childcare, hours you keep at the office versus home; having a special needs kid impacts the choices you make in every category of your life, it's not like "marriage" could really stand outside of that.

And all of these marriages with typical kids that end in divorce? Sometimes I get angry... sort of like "wait a minute you have everything going for you there: health, and typical kids, and no short bus, no 2+ hour IEPs and no wondering whether you are going to drive off the road because you're so tired because your kid has epic migraines and hasn't slept in days." I think, "Why is it that we are making this work, and you can't with your simple, easy, carefree life?" And I know that's not completely fair, because every relationship has its moments, it just seems we have a lot of things working against us, and we are still here, together.

So it occurs to me that maybe that's why we're still here, or at least part of the reason, aside from really having liked each other to begin with. Maybe having a special needs kid has cemented our relationship, in ways that only despair, coupled with a deep abiding love for our child, could possibly do.

We have learned how to move through adversity, together, and we share the same dark, dark, humor, and we have remembered to laugh. We have figured out, on our worst days, how to still be good roommates, because we have children to raise, and an example to set for them.

I don't necessarily recommend adding a special needs child to a marriage to strengthen it, I'm not thinking it works that way, but for me, for us, we're going to be just fine; place your bets.

Shattered

Lucy just spotted a shattered glass in the china cabinet. It's really surprising it's taken this long to have something break in there considering the fragile contents, and the fact that the china cabinet is still standing at all is rather amazing since it is seems to be in the direct path of most children who visit the house, and is on Jake's twirly evening path when he starts doing laps around the upstairs.

The china cabinet has been in my family for years and years. I think I am at least the fourth generation to have it in my house. It's filled with tea cups from my great, great aunts, and old keys Descartes and I found in a flea market in Nice, and a dashboard hula girl I use to determine whether we've had an earthquake (is she shimmying?), and a raku duck from Canada and the champagne glasses we used to toast our future on our wedding day.

It was one of those beautiful Flutes that must have fallen over last night when Jake used the china cabinet as a football training sled. It fell on to a rocks glass of unknown origin, and cracked the smaller glass into multiple pieces of jagged expensive lead crystal.

I found the key to the old lock in a bowl on top of the cabinet and opened up the doors. Lucy was so excited to see inside. I showed her the artifacts of my life while she held the little key to the cabinet. She ran her little fingers over hand blown glass, and we talked about the words "mementos" and "keepsakes". We talked about champagne and raku ducks, and caring for things so we can pass them on to the next generation. Then Lucy dropped the key into a little toy bucket that happened to be on the floor near the cabinet.

"We can put the key in there mom, and Jake will never find it because he's not smart."

My heart shattered. I got tears in my eyes and a lump in my stomach.

She knew by my face she had done something wrong. She immediately asked to "stop playing glasses and eat some pancakes." I asked her to come sit with me for a minute to talk about what she had said and she didn't want to. She was visibly uncomfortable.

I wasn't angry, I just wanted to talk with her. I know children are mean to each other all the time. My brother called me stupid and ugly, and many other nasty things when we were tweens and though it is extremely rare now, I'm sure he's called me a bitch more than once in the last ten years, and I know he loves me. I know we say mean things about each other all the time, but Lucy has never made a comment about Jake's disabilities except to tell Grandma once, "Uhm, hims doesn't talk so much."

So I convinced her to sit in my lap, and I asked her to not ever call her brother stupid again. She got very defensive and said, "I did not say he was stupid, I said he wasn't smart!" Which shows you exactly how I heard the words. Which of course sent me down a rabbit hole worrying that I had actually added negative vocabulary..blah blah blah.

and so I gave her a quick couple sentences... "We don't always know how much Jake knows because he has a hard time communicating with us, so it's possible, indeed likely, that he understands a lot more than we think." and "There are going to be people out in the world who are not going to be kind to our family or to Jake because they will think he's different, but you are supposed to be on his team, so please don't ever say words like that again."

and innocently she said, "I'm sorry mommy, I just wanted to hide the key so Jake wouldn't get into the cabinet and hurt himself on the glass."

AdventureVan

We had a big weekend after a sort of harried week, running around trying to prepare for this big weekend. We called banks, moved money around, photocopied and faxed papers and made a zillion phone calls. We oiled, smogged and waxed and wiped, then packed and drove to Tahoe, and everything went exactly as it should.

Our family loves a good adventure. We plan well, and try to account for most contingencies, but the story is always better when things go wrong, as long as those things do not interrupt sleep or safety. In an effort to thwart those particular types of problems, and with great hope that we will be able to have Jake and Lucy experience as much of this country (continent?) as we can help them experience, in spite, and a bit because of disability, Descartes researched, and we just bought this weekend...

AdventureVanthis really is a photo of our van with Lake Tahoe in the background.

Sorry that this "MonsterVan", as little Hawk called it, has only this small picture to post so far. I have yet to photograph the entire thing myself. This van will allow us to go camping with Jake and know that he will be safe at night, locked in tucked away and cozy. It has 4-wheel drive, so we can set up camp in locations that are more off the beaten path, which generally means farther away from other people and their cars. We can keep Jake safe in the woods, near bodies of water, cliffs and rocks, but it is nearly impossible to protect him from careless drivers in campgrounds, or the evil scowls from neighboring campers when he is hooting and hollering with happiness.

AdventureVan is gigantic, seats 12, has a pop up top to provide a sleeping area, and provides our family with the comfort of being able to carry everything we need.

Descartes spent a lot of time researching these types of vans. He actually told me he started to look when Jake was only 3 or 4, after he realized that our family's camping experience would probably need to look a bit different than what camping looked like when he was a child. The first thing we had to do was trade our beloved LandCruiser, but I know it was time to let it go (notice the mileage on the odometer over there). We took some great trips in that car, and it was the first major purchase Descartes and made together after we were married. I stepped outside the house just as the new owner of the Cruiser was starting the engine, and I was suprised to have my eyes well up. I know it's going to a good home, a Daddy and his two beautiful girls. We all ended-up with what we needed.

As soon as the papers were all signed and keys traded, we put in all of the car seats, noting how easily they all fit across the bench seats. We put Wolf, Hawk and Lucy across the back, Jake had his own row and Jaster and Demanda sat in the front bench. We enjoyed lunch at one of our favorite Mexican food places, Taqueria Jalisco, where the seating is easy and the customer service is kind and the food is delicious. Then we made Descartes drive us all around and all the way to Red Lake
Jaster and Descartes did a happy dance on the banks after they discovered that the lake is indeed frozen over, and already shows signs of ice fishing, with 3 or 4 holes drilled already. I smiled happily because the children were all asleep (except Jake of course). A happy, driving, napping van. Descartes guided our crew back to South Lake through a snowstorm.

Our first big trip will probably be to the Grand Canyon, but we will put the van to good use before then. I'm hoping for a grownups only trip to the wine country. It needs to be vacuumed and spit shined a bit, but it is so cool and the kids love it, and my husband is happy. The kind of happy that I haven't seen sustained in a while, and it looks good on him.

We made a good choice.

Asking for Respite

Here's a sampling of what I just turned in.

**************************

In addition to typical Autism symptoms, CP Ataxia and Global Developmental delay, Jake also suffers from two major health issues.

“Episodes”
Previous: Pain from unknown source for 9-11 days every 5-6 weeks “episodes” resulting in near loss of sleep, severe agitation, self-injurious behavior and complete non-compliance. Jake also suffered from panic attacks which could blow up into major tantrum/agitation.

Current: Pain has been partially attributed to migraines. Episodes continue to come every 5-6 weeks, duration has been decreased to 5-6 days. Severity seems to have diminished slightly. Reduction in symptoms can be attributed to better use of psychotropic drugs (Zoloft, Valium), better communication between home and school (to identify early symptoms) and use of Maxalt, an anti-migraine drug. Panic attacks have decreased dramatically.
Jake still has severe agitation during episodes which have, in the last six months resulted in injury to both Jake and his caretakers (Aide, Mom and Dad).

Desired Future Outcome:

• Continue to decrease intensity and duration of episodes.
  
• Increase Jake’s communication skills using icons and “talkers” so he can tell us when he is beginning to feel symptoms. The sooner we get the migraine medicine into him the more likely we are to reduce the severity of the episode.
  
• Continue use of Zoloft to discourage anxiety and panic attacks. 
  
• Continue use of Valium when Jake’s agitation peaks to avoid injury.
  
• Continue to use communication book back an forth to school to provide consistent care for Jake. Teacher also phones and texts when she is concerned that he is entering an episode so I can drive to school and administer medicine.
  

ADHD
Previous: Inability to sit still in school, unable to calm down for dinner at home. Complete inability to eat in public, difficulty being calm enough to safely be a part of the community. Escaping, physical non-compliance led to (mild but constant) injury of both parents. Use of Adderall was ineffective after 6 months, adding late afternoon short-acting Ritalin had mild success.

Current: Jake now takes 18 milligrams of Concerta which lasts through most of the day without the side-effect of aggression or tears as the medicine wears off. Evening (6-8pm) is still difficult because the medicine is out of his system, but his behavior is more manageable and not as dangerous to himself or others. Camping, hiking or other outdoor activities (including a grocery store parking lot!) which are not safely guarded continue to be a problem; Jake’s hand must be held AT ALL TIMES or he will run away.

Desired Future Outcome:
Continue use of Concerta so Jake is better able to acquire skills at school, and be included more often in after-school, dinner time and evening family and community events.

Use of Respite:

• grocery shopping
  
• dental and medical visits for mom and other child
  
• sleep
  
• physical therapy
  
• laundry
  
• gym
  
• therapeutic massage
  
• date night
  
• PTA meetings
  
• educational lectures
  
• activities for other child (swimming lessons, ballet, art class since Jake is unable to wait during ½ hour classes)
  
• sleep
  
• coffee with friends
  
• car repair
  
• banking
  
• post office
  
• IEP/school meetings
  
• library
  
• watching mindless television/reading
  
• being on the other floor of my house
  
• miscellaneous errands
  

Time for Sleep

and I know this because:

1. my children are both actually sleeping in beds and no one is bleeding.
2. my husband has gone to bed
3. my glass of wine is empty
4. my eyes hurt

and the number one reason I need to go to bed...

I just started thinking about the possibility of training for marathons or better yet triathlons.

ha HA! this friggin LIFE is a more than a triathlon.  

we are on day forever of whatever is going on with Jake. We have been trying to find the right combination of drugs for him. Listening to Sage's advice I am trying to track everything on a spreadsheet to see if there is a "good" combination in this mess somewhere. 

It's been a lot like when Jake was little and had that long episode where he didn't sleep for over a month.. only now he is 8 and big, and it is harder to keep him safe.

He seems to be coming out of it...slowly. 

This morning he said "Mom" and at school yesterday he said "Teacher". 

always looking for those small victories.

Change

Anna, Jake's loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can't physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn't know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake's body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that's constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn't toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn't tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won't bother to learn all of Jake's subtle cues about when he needs to eat and pee and rest and run. Didn't tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid...or worse yet leave your kid in soiled pants and let them get on the bus because they won't be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn't tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn't pushed and held to standards he won't learn and grow and we will lose even more time. I couldn't bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn't tell her that I was crying because her brother's life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.


I told her I was sad because one of Jake's teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said "me too."

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake's life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Victories

I'll take 'em however I can get 'em

Just went to the grocery store with both of my children. We are all still alive, and it was actually a "real" shopping trip...or at least we filled the cart. I was just telling Squid that while I'm quite certain I paid more than I normally would for some items, I am willing to pay more if it means that I got to take my special needs kid out on an errand that will be a part of his life forever and have it go better than okay. He was happy and jumpy and squealy and smiling. Lucy was begging for ham and bagels. I was able to keep hold of Jake's hand AND get Lucy her raisin bagel. I am calling that success.

I only got one "oh poor you" look, and it was from another mom with a kid in her cart that was "too old" to be there, playing with a small box. Perhaps her look was actually "oh poor you, I have one of those too."

We got help to the car from a young kid who thought Lucy was the most precious kid who ever landed on the planet. And she is precious, but mostly because she finally fell asleep in the car on the way home allowing me to unload the groceries and make dinner for both kids sans drama and "I NEEEEEEEED that Mommy."

Now I just need to get through dinner and bath time.

I can do it.

I can do anything if I can take those two kids to the grocery store.

Is It Friday? Well it Must be Since Jake's Talking!

I just got a call from Janice, Jake's amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: "Jake look, there's the circle. There's the square. There's the triangle."
Jake: "Triángulo"

for those of you who do not speak Spanish, that's triangle. What's even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish...so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna's ice cream too.

Anna: "Jake, your ice cream is all gone."
Jake: "NO."

Janice: "Jake, would you like some of my ice cream?"
Jake: beginning calmly and ending with high-pitched happiness, "yeAH!"

a few minutes later...
Anna: "Jake, you should say 'Thank you' to Ms. Janice for giving you some of her ice cream."
Jake: beginning slightly muffled then ending clearly..."Thank YOU!



parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Let's See, Where Have I Been?

Well, there was a massive migraine this weekend. The kind that includes throwing up..bile....yum. And what else? Oh yeah. Rats. Yes, rats.

Call PETA. I killed two of them in the last week. There is a long story there that includes the fact that my 6'5" husband is really, very disturbed by rats, dead or alive. That puts me (voluntarily) in charge of rat clean up. He is really a wonderful husband and father, so in this one area, it is my pleasure(?!) to take care of cleaning little bloody paw prints from our very own Remy off of the floor, and picking up his lifeless body after it has been ferociously snapped by my baited trap.


Rats in your kitchen suck. If you have never had a rat in your kitchen consider yourself the luckiest person in the world. Our neighbors removed a ton of brush from their front yard (big bushes and 500 + square feet of juniper). It is better for the neighborhood to remove the habitat, but in a pinch, it turns out that the space behind the kitchen baseboards in my house makes a decent enough home for two rats for a week. I am normally a generous hostess.

We spent nearly all day on Sunday removing the baseboards, then taking wire mesh and stapling it up under the kitchen cabinets so that the 1 1/2" opening was sealed. I then crawled under the back kitchen window box and discovered where they were coming in and sealed it up with steel wool and more fine metal mesh. Let us pray that there were a)only two of them b)if there were more than two, that they are all trapped outside the house and not inside and c)in the current torrential downpour the little buggers do not attempt to get in our home through any other narrow secret rat passage.

Perhaps I will recover soon and share more exciting things like:

• Jake pooped on the potty at school AGAIN!
• Lucy, at 20 months has begun speaking in 8-word sentences: "Mommy, I want to wash my hands please."
• Descartes and I had a lovely first play date with a couple and their two children... where Jake's (dis)abilites were neither feared nor obsessed over. We just had a plain old relaxing time. The mommy works with Descartes and the daddy is a kid watcher like me.. but he is a master home brewer.. play`dates are always better with beer!
  
• The backyard patio is done and Descartes has re-worked the pergola thingy and we have enough amps in the outside subp-panel to put a hot tub out there!
• Jake has been answering more questions with yeah and nah!
  

Red, White and Teary Blue Eyed

I love this country. I love the freedoms and the community and the possibility for real change and the collective longing for simpler times. I love 24 hour news and drive through liquor stores and short skirts and church on Sundays. I love boys holding hands, and teachers teaching, and libraries open, and movies playing and people praying and others lowering their heads to Mecca all within one mile of each other. I love higher education and the right to vote and due process and the abolishment of slavery. I am grateful that my special needs child is a valued member of society, and that we are not made outcast by his birth.

This is a great place, and maybe it's just 'cause I got to sleep in the other day, but I really do have a great life.

I got teary eyed when I turned in our ballots today (we vote by absentee ballot, but generally forget to mail them so I turn them in to the local precinct.) I was watching all of these people file in. The place was packed, and there were parents there with their teenage kids. What a grand thing it would be to have this year be the first time one gets to vote. The Democrats will present with either a female or a black man, or possibly both! on one ticket. Black men couldn't vote until 1870. Women couldn't vote until 1920! You've come a long way baby...

I am not one to stick a sign in my yard, not one to necessarily even make an endorsement of anyone, so I am hesitant to post this YouTtube video, except that it moved me. Not necessarily because I believe in everything Obama believes in, but because I do believe that my generation is finally, finally, getting involved. And those people in their twenties.. they are not only involved, they are excited about politics. That's what we need in this country to rout out partisan silliness, and stop the nonsense in Iraq.

So while I am still one of those Americans who is still really trying to find out with whom I am most closely aligned.. here is that Obama video

Backyard Makeover Continues

The paver guys come tomorrow. In a matter of days the bulk of the backyard will be finished. It will cost about $2000 a day to have it done. That is an ugly amount of money... I do however think that this money is better spent now on Jake and his happiness than saving it for an unknown college future. Perhaps that is short-sighted of me, but I want my son to have a safe place to play. A place where he is happy so his sister thinks he is cool and fun...and selfishly? I want to look at a nice backyard when I come into my house and when I do the dishes. It is a good thing for the family. It is painful to pay others for something we physically can do, and technically can understand, but we are realizing that we actually don't have as much time to complete projects as we think.

When I was Jake's age I helped my dad build things. I helped garden. I cleaned out the garage with my mom. I sorted laundry. I forget that some of the reason I can't get done what my mother seemed to accomplish easily is because I have this special needs kid. He can't help on those projects, but more than that, I can't actually do them because he can't be trusted to stay safe while I do the task. Gardening in the front yard would be inviting death since we have no fence keeping us from the street..and we are on a hill. The property in the back would seem a place he could play while I plant bulbs or weed, but there is an empty lot with another hill that leads to neighbors who aren't all that nice. Anyway. I fold laundry downstairs while Jake plays close by on the deck. Friday I had the babysitter play with the kids on the deck so I could garden on the hill in the front but still spend time near them. It felt a little bit like when I was a kid. I guess I want my kids to have memories of me like I have of my dad digging and planting.

To me gardening is a physical expression of hope and faith. Planting a bulb and waiting months for the promise of a bloom? You can water and weed the area, mulch and still you might not get a flower later. Most times you do, but if it's anything like the planting at our house--in my harried rush to plant in five minute spurts here and there, I throw all of the bulbs in a box in October. Then in February, March and April... I never even know what kind of flower is going to come up.