into the woods, living deliberately

Written In The Stars

2013-04-17T20:26:00.001-07:00

My blood pressure just shot up so high I was seeing stars.

Calm house, homemade broccoli beef, Jake's aide on time and helpful, the wind has finally died down. Things were going so smoothly I was able to sort and file papers.

Then after dinner and a nice warm shower, Jake's voice just exploded through the house, from silent to AC/DC-Highway-to-Hell loud. Yelling! Yelling! And he was crying that high-pitched cry that ends in an almost-sob. And he was running around the upstairs and throwing himself to the ground, dropping on his knees so hard I could hear the arthritis he will have later in life.

His arms were out-stretched, and too wide for the hallway, his hands bumping into bookcases and backpacks, and his gait was manic. He needed every inch of space we had, and then some. It was like he wanted out of his own skin.

Lucy came over to me and said, "I know this must make your heart ache Momma, because one of your babies is so sad. My poor brother, he must really hurt. He's so sad."

So, so very sad. I haven't seen him this upset now that he is this big. A three-year old dropping to the ground is very different from a 5'1" tween hitting the hardwood floor with his whole body.

He ran down the stairs, past the aide who has seen this before, but probably not to this extent. I could hear his feet sliding across the rise and run of the staircase, and I willed him not to fall into a broken heap at the bottom. I prayed he would not be there crumpled on that tile that I hate so much.

I got him to his room, and he jumped on the bed, and ran and hit the walls, and hit his head with his hands, hard, so hard that his temple was pink. My sad boy.

I asked him to slow down, to let me think about what the problem could be that had come on so quickly.

He stayed still a moment, waiting.

"Do you want medicine for your head?"

He leapt out of bed and clapped his hands together, still yelling, but it really seemed like he was clapping in approval. This acknowledgement starts out like that first slow clap in an audience, when they just aren't sure of what they've seen, or heard, or if the moment is too reverent or wrong to disturb, and then it is faster, and insistent. He clapped his hands at me and ran to his bed covering himself with his comforter, then hopping up to get another drink of water from the cup that he had spied on his dresser.

I went to the cabinet and got a Maxalt, a migraine drug that is fast-acting, and melts in your mouth. Back down the stairs I opened the little air-tight package in front of him, and seeing what it was, he opened his mouth to take it. Another sip of water and he turned from me.

And then I got sort of lost for a moment.

All I could see were stars. Stars flying and dipping in front of my eyes, shooting across my field of vision like a sparkler that is too close.

I am thankful that there was still another adult in the house in case I was the next person to have a crisis. I was also glad that I purchased a blood pressure cuff years ago when I was pregnant with Jake; I was such a worried mom back then.

I went upstairs and checked my blood pressure and my systolic (the top number) had jumped by 25 over the highest number I can remember ever having, and the lower number, the diastolic, was up 20. My pulse rate was high, not burn-balories high, but high.

Twelve minutes after Jake took the medicine he his splayed out on his bed with his head shielded from the last light of the day, by a mile-high pile of pillows and blankets. He stills

Lucy and I just made a last check in on him, because quiet can also make a Mommy scared. He is safe, and almost asleep.

My blood pressure is almost back to normal, my heart rate has dropped. The aide has gone home, with assurances that if I need to call her in the middle of the night, I can. Lucy is coloring, happy that her brother feels better. Jake sleeps.

Night has fallen, the house is quiet, and out the window, there are stars.

When Everything is Just So Big

2013-03-19T13:42:00.000-07:00

Every once in a while it feels like our life is filled with VERY BIG things, and nothing small at all.

I expect small problems all the time. This world is not set up for people who are outside the norm, and we have disability, precociousness, and we are all way above the average height, just to name a few ways we're different. So I expect that we will have trouble finding a parking place that doesn't endanger anyone, and need to load a wheelchair in and out of a car, adding ten minutes to any "quick trip." I expect that I will need to explain a grown-up concept to my always-curious daughter who understands just enough of something so as to require more information. I assume I will need to scope out a restaurant before we commit to going in., and if we're at home I might need to spend 8 minutes adjusting the chair my son sits in to eat. It seems I regularly need to spend some time in conversation with my daughter covering the topics of equity, fairness, ability, and picking up after yourself. Little things.

But right now, it's all so big. So here's one big thing:

I need to buy a new car. Not "I want to", or we are "thinking about it", I must buy a new car because my always reliable Toyota Sienna minivan had "sudden unintended acceleration" (SUA) a few weeks ago. While I was able to keep the car under control, and did not injure anyone, I can't ever trust that the car will be safe enough for me to carry my babies in it again. What if we had been on Echo Pass? or on the tiny switchback-turny road, Old Priest's Grade? I needed a full left turn lane, about five car lengths, to realize what was happening, get it into neutral** and apply the brakes. Maybe I stopped in four car lengths, but regardless, on a mountain pass you just don't get four car lengths to get your car under control. And what if I hadn't been driving? Jake's aide already told me she wouldn't have known to put it into neutral. If I had not gained control I would have hit the center divide and a light post on the opposite side of the intersection, or God forbid another family in a car.

Toyota cannot duplicate the problem with my car, and they have let me know several times that it was most likely "floor mat entrapment"(meaning that my floormat got caught under the pedal and kept the accelerator depressed). Lord knows I would be thrilled if that had been the problem, because then I would just take out the damn floor mats and continue driving the car that we just spent $4000 to repair (because we, very responsibly, had decided to drive the car for 4-5 more years since we own it, and it still has a perfectly good engine). But I know it was not the floor mats. I've had that happen to me in another car, and the feeling in the Sienna, when it began to accelerate without me pushing down in the pedal...this was a completely different feeling, a terrifying, out-of-control feeling. And now that I know what it feels like, I can recall, very specifically it happening two other times. (All three times I was on a flat road, moving from right to left, accelerating by 10-15 miles per hour, with my turn signal on, and the temperature outside was in the mid-seventies. Does that help your engineers Toyota?) One of those other times I called my husband right after it happened, and told him what I thought had occurred. When I was on the freeway, accelerating a little bit more than I wanted to, it was less noticable than on a city street. It calmed down and went about driving normally. Those other times I let it go and called it a fluke.

But here's the thing, after I got the car to stop safely, this last time, I tried to restart the car. In my hyper-alert state of mind, I decided to get the car out of traffic so I would not cause any accidents. Of course that is a crazy idea to drive the car right away, but that's what I was thinking I should do. So I restarted it. Twice. And both times, without my foot on the accelerator, the engine red-lined to about 7000 rpm. Both. Times. That means that the car was still in an "unintended acceleration" state, just not in drive. That's when I got out of the car, took the keys out, and stood outside of what once had been the car I used to shuttle my children, haul groceries, and road trip with every weekend. My car went from being a reliable part of the family to being a 2 ton pile of angry metal, bent on self-destruction, and happy to take me on a ride with it.

And so, I will not go into all of the detail of how poorly Toyota has communicated with us, how not-helpful they were, how I had to actually pay for the rental car I used while my car sat around their lot waiting for a Toyota exec to come out and look at the "customer-stated issue" Since they couldn't duplicate the problem in all of the 11 miles they drove the car, they have declared my car as having "no issues." Which is fine for them, but completely not fine for me, or my family.

So I'm not just thinking about buying a car, I need to get a different car, right now because we still have all of those things to do that we always need to do, like get to school, and to the store, and to the doctor's office.. And now I need to figure out all of the things we need to consider in a new car, and buy one on a compressed time schedule. We chose that Toyota on purpose, because it fit Jake's wheelchair across the back, has all wheel drive, has a low threshold to get in, enough leg room for our leggy family, room for seven passengers, a roof rack, and sliding side doors that slid at the press of a button.

Guess how many other cars have those features? None. No other car in the US market has those features. Toyota makes that car. It's the Sienna, and had they handled the situation differently, I might feel like they cared about my family. If they said, "Let us take that car right now for full blue-book, here is a new one with zero-percent financing, and we have no known issues at all with the new Siennas." You know, I probably would have considered it as my first choice. I had enough confidence in that company that I would have considered a newer Toyota right then if someone had just pretended that my family mattered.

My first ride, as an infant, was a Toyota Corona which was so new to America that I hear it had bad translations on some of the buttons in the car. I took my driver's ed course using my Toyota Corolla LE, and that little blue car took my Momster to graduate school, and my sister through her first years of driving. I've owned an FJ-60 and a newer LandCruiser. Basically I've been driving Toyotas for twenty-five years, and because I am just that nostalgic, I am sad. But mostly I am so angry with Toyota Motor Corp for not recognizing what their neglect has done to ruin their brand in my mind. I really wanted someone to care, a little, about the person who has held title on four of their cars over the course of more than half my life.

What kind of company takes a week to check on your possessed car, then makes you pay for the car rental? What kind of company says "nothing is wrong" with my car, then calls a couple of weeks later and offers to buy our floormats so their "engineers can work with them." (Even though I have explained clearly that their was no floor mat entrapment.)

So now buying a car is more than just a "whoo hoo I have a great life and I get a new car!" It's all wrapped up in me feeling safe again, and ensuring that my kid with disabilities can be comfortable in the car, and figuring it all out quickly. Changing brands after this many years is harder than I thought it would be, but I think we have decided on....a Ford Flex. In fact, it may look a lot like the one below.

Ford has been awesome on Twitter answering questions, offering to set up test drives searching for cars. It's not an expense we planned on, but if everything works out it will be a great thing for our family.

So long Toyota.

**In an SUA situation, in newer cars, pressing your engine on/off button may work but you will probably lose power steering and brake assist, making the car difficult to handle. In older cars, turning the ignition off at the key has the potential to lock the steering, and is not generally recommended. I stomped my foot on the brake to the floor, put it in neutral and continued to slow the car. The car made a very terrible sound engine against breaks, and worse in neutral and park with the engine roaring at redline. Here is an Edmunds. com video that discusses what to do in the case of a stuck open throttle.
People who drive a stick would probably naturally put in the clutch and put the car in neutral. I am very thankful that I knew what to do, and I specifically want to thank my Dad, Jack T., and Jennifer and Greg for insisting that I learn how to drive a manual transmission car. I know I was a terrible student, but obviously you were very good teachers.

Tell Me A Little Something

2013-02-27T17:36:00.000-08:00

Jake is considered non-verbal. I used to say pre-verbal, but then I realized that was just as insulting, and probably less accurate, since I do not expect him to speak in a clear manner that will be medically or academically recognized, and quite frankly, communication has always been the goal, not speech. But he does say words occasionally; they pop out of nowhere, and they are clear and relevant, and almost always said with a wit that indicates he has a lot going on inside that big brain. He responds to people speaking in Spanish, at about the same level of interest as when he is spoken to in English, so that makes him non-verbal bi-lingual, which is great, because it would be nice to have someone in our house be fluent in Spanish. Whatever way you call it, Jake does not share his thoughts in spoken sentences.

So I do my best to hear my son. I listen to the way he is tapping his hand on the counter to know whether he is bored or wants more of something. I hear him shuffle through the night around his room, having had his blankets fall off the bed, or become too entangled for him to wrap them around his body. And when I cover him up again, hoping that the fleece blanket will stick to his fleece pajamas, I can hear his "thank you", said with his own little chirp, that tells me he is happy and that is all that he needed. I know what joy sounds like. It can't even be typed, but there is a sound that Jake makes as he is set free from the house and let loose upon the sunshine of the day. That sound makes everyone smile. We know what "happy sounds" are. We look forward to the "doot doot dooot doot" part of the evening lately when he wants to wrestle on the couch, and laughs a lot.

It's harder for me to hear him in distress. It hurts me, several times maybe, once because I am his mother, and I am supposed to feel an ache which calls me to make my child okay when he cries, or he shows signs of pain in his voice. Then it hurts again, not exactly because I am irritated by the shrill sound he is making, but because of the tremendous disappointment I have in myself for having such a low tolerance for this part of his voice; I want it to stop because I can't do anything well while it happens, including finding a solution to soothe his urgency. And I am hurt again, because I have not figured out a way for Jake to communicate his needs more efficiently, and thus feel I have failed him. And then again I am pained when I realize that I have made his distress all about me, when no matter what I am feeling, it must be immeasurably worse for him not to have a way to communicate what he needs to me, or be physically able to fix his issues on his own. Distress is hard, but we are working on it, working on asking the right questions up front: "Does something hurt?" "Is it your body that hurts, or your feelings?" "Do you want medicine for your head?" And generally, perhaps because there is better incentive, Jake answers by touching my hand quickly so he can get what he needs.

What's interesting is trying to figure out how to hear him in a regular moment... not one of great joy or sadness; it's difficult to understand his side of the conversation when he is just being. When he is quiet in the car with me, I am often quiet too instead of asking him questions about his day which I know he cannot answer. I don't narrate the world around him as I did when he was a tiny boy, and everything was new. So we ride in silence, or sit in the quiet house when it is just the two of us. Most people don't think of me as the quiet type, but I admit that being alone with Jake can be so very calming because I am not talk -talk -talking the whole time.

It is always a relief when we figure out, in retrospect, what Jake has very clearly been telling us. We went to a restaurant the other day with Descartes' parents, and as we were getting settled, Jake half stood up, and made several rather large noises. He was reminded to use his "quieter voice" inside, but he insisted once more on calling out. That's when we saw Papa turn and walk towards us and his seat. He was joining our table, and had walked past us. Jake had seen him as he passed, and began calling out as he headed for the door. We had missed him, but Jake hadn't. Once we understood, it was so obvious that he had been calling out, "Here! We're here!" Jack sat happily, for the rest of the lunch once we were our little group again.

We all had a good laugh, and apologized to Jake. I find myself apologizing to him a lot, for not listening, for misunderstanding, for not understanding at all. I'm hoping that he will continue to know that we are all trying.

I know we approach his sounds and behaviors with a different level of respect than we used to. I expect that he is trying to communicate something when he comes to me, because it is obvious to me now, that separating himself from whatever he was doing, so he could be right next to me is intent, and if you can't really call out , "Hey Mom. I need you over here." you would need to walk on over. So when he takes my hand, I go where he leads me... I am excited to know what he wants to have happen next.

At a busy toy store last week we wandered the aisles looking for the perfect gift to give to a little boy. Rows of books, and stuffed animals, toy trains, play structures, and tricycles, this place has it all. After about half an hour, Jake extracted his hand from mine, but did not shoot away in escape mode. Instead, he took my hand, and I told him I would go with him where ever he wanted. He very calmly led me to the back of the store, to an aisle we had not walked down, but to a section you could see from where we had been looking at games earlier. It was a row of car seats. He walked over to the largest one, and started to sit down, or pretended to, or something. I asked, "Are you trying to say you want to leave now?" He said, "Yea-aHHHH." and I congratulated him on such a smart way of telling me without running towards the door, or throwing himself down in a way that would get us to leave quickly.

I looked over and a young clerk had been watching us, gawking really, but I caught her eye, and said, "He doesn't really talk much, but I think that was a very effective way to say he wants to leave, don't you think?" She let her jaw drop a little, and said, "Whoa. Cool."

Yeah, that's what I thought too:

Whoa. Wow. Yeah. Cool. I can totally hear you.

I Resolve to...

2013-02-18T19:13:00.001-08:00

To honor number 7 on my list below, here are a few of my resolutions a full month and a half into the year. I figure I just finished packing away the Christmas decorations, so I am right on schedule.

New Year's Resolutions:

Don't hold myself to anything I write below, but at least try to do a few things.
Clean out the refrigerator once a week.
Use up the amazing selection of cans and jars of things that fill my pantry.
Be thankful I have full pantry.
Use kinder words when I am frustrated with my daughter.
Use kinder words when I am frustrated with myself.
Get over myself and just hit "publish."
Stop taking everyone's hand-me-down things, unless I actually have a need for the item.
Cull the books. They are multiplying.
More water.
Call the fence guy.
Kiss more often.
Close the laptop sometimes.
Throw it away, give it away, or put it away.
Work with my son on using a fork.
Wear my body confidently, without fear of judgement.
Drink more tea.
Call my mother before she sends the email asking if I am alive.
Get passports for the kids, and make a plan for an adventure.
Take more pictures, because so many good things are going to happen and I want to remember it all.

Making Sense of Sandy Hook

2012-12-20T17:05:00.001-08:00

We need to make sense of things. That's what we do as parents, as people, we want things to make sense, because if we can identify "why" something happened, we can make it happen next time, or we can make something better, or we can prevent it from ever occurring again. We look for patterns. We find the anomaly. We constantly work to smooth the landscape of our mind because it is more comfortable.

We categorize people, both publicly, and privately, in our own minds, so we can determine how we will interact with that person. We tune our language to be understood. We form ideas about new people based on who we have already sorted and collected. And without much thought, we determine how much attention, or affection each person should receive. We determine those for whom we will advocate, and who we will help.

We use all of our previous personal experiences when we start again each morning. Every action: what to eat, what to wear, what time to leave our home, and which route to take to our destination is based on the life we have already led, and what we have learned from stories we have heard and stored. Hopefully we continue to gain small insights every moment to make our next days easier, and more efficient. We are most at ease when we know what to expect, and what will happen next.

This is one of the systems of being human. We look for patterns, we categorize and we use the information we've gained by sorting and sensing and making minor adjustments. It's a system that works almost every day. It works just fine until something occurs outside of our perceived normal, and then we try to use it anyway, even if we shouldn't. "Normal" days are parsed rather easily, but when the parameters cannot contain what we have seen, we aren't so sure what to do.

Last Friday, December 14, 2012 was not norma- and there should never be anything normal about young children being shot in their classroom. There is nothing worth repeating in a situation where people die teaching.

So what did people do when what happened was so far out of what we expect should happen at an elementary school? What did some news media outlets do? They began to try to make sense of something that has no order, no reason, and no possible solid logic. They tried to categorize someone so we would be able to identify that person, and we would know, next time, what to expect so we could prevent another tragedy.

They concluded that Adam Lanza was not just a murderer, he was an autistic murderer. They began to categorize him, call him out as separate, as different, so we could know he wasn't like us; that there was a reason for his unbelievable crime.

It would be too painful to pin it on being male, or white, or a twenty-something-- those categories are too broad, they encompass too many people, and those descriptors do not distance the evil from the majority of good, so they went with Asperger's. Asperger's with it's undefined edges, and it's different-than status. Asperger's, mysterious in origin on a spectrum with changing definitions. It was easier to use autism; it gave their story a "hook." But that kind of reporting is lazy because Asperger's didn't make Adam Lanza a killer, nor did the color of his skin, or his gender for that matter. Adam Lanza had mental health issues, and access to firepower that is beyond the scope of 2nd Amendment rights.

Intimating that Asperger's is an underlying contributor for murderous behavior is sadly ironic too, since autistics, and people with disabilities in general, are more likely to be the victims of abuse. The World Health Organzization (WHO) states "children with disabilities are 3.7 times more likely than non-disabled children to be victims of any sort of violence, 3.6 times more likely to be victims of physical violence, and 2.9 times more likely to be victims of sexual violence." And adults are 1.5 times more likely to suffer from violent crimes than their "typical" counterparts.

It would be easy to close my computer, turn off the television, and let all of this go away, because sadly, people will forget. They will get wrapped up in their Holiday travel, and their own children's birthday's before they remember the families that will have those celebrations forever changed by the tragedy at Sandy Hook Elementary school. We will forget, or never know, the names of the victims. If history has shown us anything, we will only really remember the name of the person who committed the crime. Of course we do, because we label them, build an image of what that person appears to be so we can spot someone like him in a crowd.

So what will happen as we move on from this horrible incident, what has happened already, is that the man who killed 26 people in an unimaginable fusillade will most likely be remembered, as

"Adam-Lanza-He-was-autistic."

And autistics everywhere, of every age and gender and ability will have another hurdle in front of them, preventing them from being accepted as full citizens in our society. Discrimination, and disenfranchisement are already pervasive without adding "killer." If we do not say anything, if you do not say anything the next time someone identifies the shooter that way, if we do not speak up, we may as well have been saying it ourselves; just paving the way for more discrimination, more fear, more retaliation in ways subtle or bold.

So interrupt the person who says it. Force that person back to being uncomfortable because what happened is painful and doesn't make sense. Make them un-categorize, and untie the relationship between "autism" and "potential mass murderer" because it just isn't true.

Other reading about this subject:
Shannon Rosa on Blogher We need to Talk About Adam Lanza

Emily Willingham on Slate Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

Kassiane Sibley on TPGA A Plea from the Scariest Kid on the Block

Paula Durbin-Westby Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims

John Elder Robison on Psychology Today Asperger's Autism, and Mass Murder

Autism Women's Network AWN’s Appeal to Media Sources Covering Newtown, CT
Join: Autistics, Not Monsters

I Stand Here Ironing

2012-11-09T09:27:00.000-08:00

I have come to believe that I perhaps I live a life of luxury, if for no other reason than the fact that I no longer iron my husband's shirts, or mine very often any more. We take them to the cleaners. That one thing makes our life so much simpler, removes the hazard of falling irons on little children, and adds hours and hours to my weeks. I am a lucky woman.

But there is something to ironing a shirt. The precision, the care, the time it takes. makes me focus for just a little bit on nothing, and everything all at once. I pulled out the board this morning, heated up the iron, adding water to make steam puff about me as I lay the shirt across the smooth pad. I thought I would just hit the collar, maybe the front placket with a small amount of care, and I could be on my way.

Then I saw that the yoke was a little funky, so I ironed the collar, back then front, and tugged the yoke around the tip of the board first one shoulder then the next. As I was flipping the shirt, attempting to go straight for that front button placket I saw that the sleeves really didn't look very smooth at all, especially where they met with the now ironed yoke, so then I did the sleeve, and the other, and by the time I finished those sleeves, I had decided to just finish the entire shirt. It is now pressed and hanging in my closet. After all that I wore something else today.

Some people will never iron. They will pay someone else to do it, they will wear different kinds of shirts, their parents will iron their shirts for them, they will wear a uniform that comes ironed from their employer. Or they will live somewhere or have a trade that means that ironing will never occur to some people at all.

As much as ironing a shirt appears to have a begininning, a middle and an end, there's really always some little piece that can be touched up, or something that gets wrinkled as you unwrinkle another part of it. It is a battle where no one wins or loses, truly, but at some point you must just tell yourself to stop, and be done with it. There is a brief period of satisfaction after it has been ironed, but before it is worn, when the shirt hangs there, on the curtain rod or the back of the door, or off the ironing board itself, when it looks like everything is 'set.' It feel like preparations have been made, and the weapons for battle have been assembled. There is a confidence standing there in front of the shirt that you have completed something, at least this one time, completed the task, and you are now fully prepared for whatever comes next.

Of course the whole point of ironing the shirt is to have it look good on the person who is wearing it. But no matter how crisp the shirt, how perfectly creased the lines from shoulder to cuff, you cannot change the person who wears it. No amount of starch can build a backbone, or infuse a trodden mind with fortitude, even as it might be able to hide your indifference, because an ironed shirt does somehow say that you tried, that you care, just a little.

The irony in ironing a shirt at all, is that no matter how perfect it looks, how well it drapes across the shoulders and smoothly lays down the front of our chest, the minute you go back to "life" with its demands to sit, or stand, or wear a jacket, or get in a car, or hold a baby, or comfort a friend with an arm about their shoulder, or give a kid a deep, deep pressure hug so they feel safe and grounded... life will make that shirt wrinkly as if it had never been ironed, never been slaved over for some number of minutes to make it look just right. All of your work will immediately be undone and though you did what you needed to do, you will not be able to make the shirt look as smooth and unhindered as it was just hours before.

At the end of the day, the ironed shirt, with all of the ways it was used as you went through the paces of your life, the shirt will just be tossed right there into the laundry basket, along with undershirts and underwear, and dirty socks, and pillowcases. There will be no distinction for the shirt just because it looked better than the other garments at some point of the day. No special place of honor just because it started out with special treatment. When it comes down to it, it will be dirty at the end just like all the rest.

And then it will be waiting to be washed and worn another day. Any time you want to start all over again.

***

"I Stand Here Ironing" is a short story by Tillie Olsen. It was published in her short story collection Tell Me a Riddle in 1961.

Autistics Speaking Day

2012-11-01T15:40:00.000-07:00

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

2012-10-24T04:00:00.000-07:00

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.

My Not-So-Little Tween

2012-10-02T11:41:00.000-07:00

I love it when you laugh. We call you chuckles when you're that silly. Sometimes you laugh so hard no sound comes out. When I do that I know I'm having a good time, so I assume you are too. It's hard for the rest of us not to be happy when you are laughing...you are a barometer which indicates just how much fun this family is having.

And when you laugh sometimes you 'lose your bones' because you're tired too, and what it must take for you to keep upright and moving forward is beyond me. You are harder for me to help when you can't walk all the way on your own, and I can't carry you anymore; not with all of those long legs and arms. But you are standing up straighter -your posture no longer hunched over. You look forward these days, not at the ground as it passes you. You watch out the window to see where we are going, and always remember places you've been before.

You are so friendly. Cautious in the beginning, like your Daddy, but once you discover the people who are respectful of you, it's clear that you choose your friends and your favorite caretakers. Anyone who says that autistic kids don't know how to develop relationships is full of it, because I have watched you, and your relationships are deep. You only really let loose with the people you trust, and you will not ask for help from just anyone. I guess that's like your Daddy too.

We know who you like, but you are telling those people yourself lately, showing many more signs of outward affection. I've seen you sit snuggled with your grandparents. And you're leaning in for a hug and standing still long enough so that we know that you are there on purpose. While I know how much you love me, I must admit that when you kissed me last week it made my heart sing. You did that for me. I'm always kissing you, and I know you didn't need to kiss me, but I asked, and you gave.

You have a new willingess to do some of those things outside your comfort zone. Share space, be held. You hold my hand now, you reach for it, and though I know I am gripping you for safety, I also know that we are holding hands by choice too. Curling up on the couch, sharing a blanket, you are learning to rest. Those things are hard to do when you are so used to moving constantly. I'm learning too, and when you pause, I try to remember to be with you in the moment, because they are are all so fleeting.

Our conversations are lopsided I know. I talk, you answer questions, but the more we listen, the more you communicate. Maybe I am offering better choices, maybe you see the personal incentive for letting me know what you really want instead of me guessing, whatever it is, we are all happier.

I think you're hitting your stride. So many parents worry about the teenage years, and maybe next year you will be an awful mess of hormones raging around the house, but for now, you are still my sweet boy, growing into a handsome and loving young man.

******

Happy 12th Birthday. We love you so very much.

Chances Are

2012-09-10T10:09:00.001-07:00

In the middle of the night, I heard my daughter cough in her sleep and jumped out of bed. She had only coughed once, but that's all it took for my heart to race and a cold sweat to break out. I rushed to open the door and fly down the hallway to her bedside, tracking in my head where my car keys, tennis shoes, and charged cell phone were. Could I call Jake's aide to come over at nearly three in the morning? Would Descartes and I both go the hospital? Should I call my parents now and let them know, so they can make plans to fly up, or should I wait for the prognosis from the hospital staff? Will we go to Stanford, or the closer, smaller hospital? What is the name of the one drug that helps a little bit in this case? How will I live without her? I cannot imagine our lives without her. Is my daughter wearing any pajamas?

I put my hand on her stomach and her forehead and I gasped, or choked on bile, or something that made me stop all of the decision trees in my head. She didn't have a fever. Cool soft skin on her little tummy and an unfurrowed brow, peaceful and healthy, and breathing quietly. Sleeping, without pajamas, through all of my worst nightmares.

Chances are slim that we were really exposed when we stayed one night at Curry Village while Jake was at his own camp. I know that the virus is very rare, but we are still in the window where we need to keep an eye on ourselves. Once it gets to the lungs the prognosis is not good, but for the night we were all still symptom free. Nope. No hantavirus tonight.

Just try to go back to sleep after that.

And as I lay there in bed trying to will myself to rest, I sadly realized that I am always preparing for the worst. How much of my brain, I wondered, is spent doing all of that thinking behind my everyday thoughts, like an operating system that is taking up too much memory doing background tasks that don't seem to help my speed or accuracy in other parts of my life.

Does it make me a pessimist that I expected to find her in need of emergency attention? Does it make me pragmatic? Cynical?

I am filled with hope for my family, for my children, and our future, and I fully expect that we have so many bright, bright days ahead of us, but I am always equally preparing for every single bad thing to befall us. And perhaps that's what made me sad as I failed over and over to clear my mind; I think there are equal parts expecting joy and disaster... they are equal.

What is life like for people who are not on guard all the time? And was I always this way, or is this one of the 'skills' that I have picked up because without it we would already have lost Jake to an open gate or a knife in the sink or a car door left without the child lock on?

Jake is gaining new abilities every day lately. He is happy and engaged and laughing more. And he can now twist open a door knob almost every time he tries. He can even twist the knob and pull the door towards him, step out of the way, and then slip himself through the open door. It is exciting, and knowing that he is that much closer to more independence makes me proud, relieved, and grateful that in an emergency he might be able to exit a building safely.

And, it just added a need for increased vigilance for me.

That's the crux of it. Parenting is like that, with any child. We can't wait for those little babies to crawl, and the minute they do the floor needs to be clear of Legos, and marbles, and dog food, and maybe should be cleaned, but not with harsh chemicals. Their first steps and we install gates and put away glassware, and store the marble coffee table in the garage for a few years.

If we had experienced typical development at our house, perhaps I would have calmly proceeded from one level to the next, then relaxed as new dangers appear, and previous ones become less problematic. But that's not how it rolled out at our house. Jake has always grown in bursts of knowledge and ability. He didn't crawl until he was five or six, but his first steps at age four came not one at a time.. instead he walked across the entire living room as if he had done it every day for years. He went from needing to be lifted into the car to scampering up on his own, seemingly overnight.

I am ever hopeful that he will learn the next thing that changes his life. We work to help him gain any skill he wants to develop, but I never know if today will be the day he masters the task. There is no practicing, it always seems that a switch is clicked on, and if I am not prepared for every skill to show up, every day, the consequences are grave. So each day I am equally filled with hope, and a bit of excitement waiting to see what he will be able to do next, and I am fearful that I will not have adequately prepared his environment to keep him safe.

I wish I could just revel a bit more, and worry a bit less. I want to believe my husband when he reminds me that we were not anywhere near the tent cabins those other people stayed in. I want my children's growth to be celebrated without a new list of concerns popping up in my head.

I'm going to try to tip the scale a little bit more to the 'expect joy' side, and clean out the part of my brain that is on guard all the time. I know I won't be able to let it all go, and I wouldn't want to, but perhaps I will take the advice I always give others:

It will all be okay, or it won't. And worrying about it won't change a thing.

A Little Rain Must Fall

2012-07-31T13:28:00.000-07:00

I saw the piled boxes at the store, each one containing a pair of galoshes and a matching umbrella. I hate umbrellas. They just break, or the wind blows them the opposite way turning you into a flower bending in the wind, rain soaked and wilting. And when you've used an umbrella and arrived at your destination then you need to carry the umbrella around, or put it in some bucket at the door where it will most likely be stolen. They never seem to dry out, leaving wet marks on the seat in the car, or on the floor. Their drips of water make the entry way dangerous.

I remember liking umbrellas when I was little. Do you remember the clear ones that came all the way over your head and down to your shoulders, but you could still see? I always wanted one of those, and I'm not sure why I never got one.

So all of those things go through my head as I am standing there looking at cute fireman galoshes with red umbrellas, and black polka-dotted galoshes with a shiny matching polka-dotted umbrella. The pallet of items had just come in, but I know how these places work, and if you aren't there when the awesome thing comes through you are out of luck, so I stood there and decided what kind of mom I was going to be.

My daughter loves umbrellas, and galoshes. She loves matchy-matchy. She loves having the specific gear for an activity. She likes having things that are similar to the things her peers have. But all last year, I denied her having a stupid umbrella because I don't like them. I didn't see it as a necessary item for a 5 year old who never walks in the rain farther than the distance from the car to the classroom door, or our own back door. When I was in kindergarten I walked to school, but I still think I got a ride on rainy days. I did not see the point of starting some umbrella habit, when I could explain, and demonstrate the practicality of hats, which are both fashionable and functional, and can keep you warm and your head dry. I thought that her waterproof jacket and hat were plenty to get her through the misty mornings and occasional downpour. So that's what we did last rainy season, we went by my rules.

And every chance that kid got she would borrow a friend's umbrella, even if it was just to walk across the playground, or five feet from her friend's coat hook to her own. I almost think that she was the only little girl who didn't have an umbrella of her own last year. Part of me was a bit smug thinking that I was raising this more practical and flexible child who knows that rain is just water, and it will dry. I thought that I had gotten away with something, and that my daughter was more mature having moved right on past that stage of little sets of things for girls that coordinate and fit for only one season.

Standing in the aisle of the giant store, air conditioning blasting, the rainy season more than four months away I thought differently; no longer feeling like I wanted to be practical. Instead I really, really, wanted to give her what she wanted, a matching umbrella and rain boots, because she is growing up so fast, and really, how many years are there left when she will want to look all that cute and buttoned-up, and so over protected from drizzle. I got a bit choked up thinking about how many things she just will never do again, which leads me right to the fact that we aren't having any more kids, so not only is it my daughter's last few years of this preciousness, but the last of mine too.

I vowed to have more patience. I promised to enjoy those things that she needs help with, like getting in and out of the Jeep, or putting on her bike helmet. I thought about doubling up on the singing at night, and reading one more book, every time she asks. I decided to buy her those little boots with the matching umbrella because she would love them, and I would get to have a sweet little girl for at least one more rainy season.

Scanning the boxes, I smiled, thinking how big her feet are already at a size 2.

Then a part of me was crushed-in, maybe forever, as I painfully realized that the boots only go up to size 1.

On Our Anniversary

2012-07-25T09:07:00.000-07:00

You were a little boy when I met you, I know that now. With your black hair and shiny hazel eyes, you were young, we were so young, but you had already been through so many things that I thought you were very mature and just had a little boy face. I thought I was all grown up with my speedy car and running my own store, and living on my own never having gone back home after college.

I'm glad that you came home after school or I never would have found you. I am so thankful that California felt like home to you so that you came back to your family. I fell in love with your family first, you know that. Your Mom and Dad and how they loved you and your sisters, and the obvious way that you were a family who fought for each other and supported each other even on grumpy or tough days. You were so respectful of your parents, and they trusted your judgement and your choices; it never seemed like you needed to prove anything to them.

It wasn't hard to fall in love with you, but I'm glad that we were friends first and that I told you all of the stories that I never would have told some boyfriend. You know every twist and bad turn I have taken in my life, and you never let go of my hand when I told you those stories. You have always been a good listener, and able to withhold judgement, or at least you appear to be able to do those things, and maybe that's just as important. You see what is good in someone even as they reveal their failings. You see an individual's best intentions, and give so much room for people to succeed.

I liked waking up this morning and once again finding you there on our bed with too many pillows. After all of these years, no one has ever slept on the couch, or left, or run away, and with all of the frustration we've been through, and some sadness, and worry, and strain, my mind always goes to the wonderful things we've seen and done together, and can only hazily remember the disagreements. Maybe that's how I want to remember things, but mostly I think that's how it is. We are on this path together, and any of those harder times just gave us a better sense of direction for our future.

I trust you. You have so much integrity that I know it has put you at a disadvantage sometimes, but I am so thankful that time has not taken that away from you. Cynical, pragmatic, we've been though those months, but it is with great anticipation that I watch our life unfold before us. Even as we have watched relationships around us sour, or dissolve, or break apart in rocky crumbles, there has always been something that we have... we like each other.

I like you, and your humor, and your clickety-fast mind, and your strong hands. I love you as my husband, and treasure you as a father to our children, who have your same twinkly eyes.

Thank you for another year together. I would choose you again, and again.

I choose you now. I love you. Happy anniversary sweet man.

Scarborough on Autism

2012-07-23T13:15:00.000-07:00

In case you're wondering, I'm pretty sure my son is not going to grow up to be a mass murderer. Thanks Joe Scarborough--it only takes one idiot to undo advocacy.

"You don't want to generalize," said MSNBC's Joe Scarborough, but that's exactly what he did when he said that James Holmes, the young man in custody as the Aurora, Colorado shooter, was "on the autism scale."

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"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

What compounds the irresponsibility of his statement is that Scarborough is the parent of an autistic child. So he managed in one sentence, one very publicly stated sentence, to make autistics out to be dangerous potential murderers, and make parents of children with autism look like asses.

Here is one autistic adult's perspective, her open letter to the media:

I am an Autistic adult. In the wake of the tragic shootings in Aurora, Colorado, my community was sitting not only in the sadness that all such tragedies bring, but also in fear and anticipation that once again, we would be your scapegoat. Once again, you would start declaring that we and the killer had the same neurology before the bodies were even cold, before the initial tears had dried.And again, you did not disappoint. Again, you went to declare the killer mentally ill or Autistic before you even possibly had a chance to talk to anyone qualified to make those calls. Again, you cast yet another layer of suspicion on my community. Again, you made me someone to be feared.

It would be lovely if Scarborough could apologize in as grand a way as he made his first declaration, but news cycles don't really encourage apologies. It would be even better if he took the time to educate his viewers about autism, perhaps he could, I don't know, have an autistic on his show, or talk to one, like his own son.

A journalist, Mike Elk, who recently "came out" as autistic, asked Scarborough to educate:

Hopefully, Mr. Scarborough will retract his remarks, as well as host a broader discussion on Autism to spell away the many stereotypes of Autism often spoken by non-Autistic people such as himself.

What message did Scarborough send his own son with his proclamation this morning? What kind of self-loathing is he trying to instill in his child? This kind of language and the stereotypes it perpetuates makes it harder for young autistic adults to move through daily life, it stirs up anxiety in every adult autistic that we have once again gone back two steps, or more, and it makes other parents guilty by association.

It's easy to have a gaffe and I am all for allowing someone to apologize for something misspoken or said in haste. Talking heads are bound to make a mistake now and then, but then I was thinking, I'm a parent of an autistic child, and I know many autistics, and it did not occur to me at all to diagnose the shooter with autism. Troubled? Yes. Disturbed? Of course, but autistic? Really? Where did that even come from? Because someone said he was a loner? The fact that Scarborough "knew who it was" is so troubling and disturbing, because it leads me to believe that this is not a gaffe in any way, not a "whoopsie" but fundamentally the way he thinks.

and that, to me, is dangerous.

Sign the petition that Rachel Cohen-Rottenberg created demanding a retraction.

Other people, other posts:
Emily Willingham: Mental illness, autism, and mass murder, or why Joe Scarborough needs to shut up
Lydia Brown at Autistic Hoya: All I Want to Do is Weep
Jess at Diary of a Mom: Dear Joe
Lydia Brown The Dangers of Misrepresentation
David Cullen The Unknown Why in the Aurora Killings
ASAN Statement
Caroline Miller at Child Mind Institute James Holmes and the Downside of Amateur Diagnoses

Busy Days of Summer

2012-07-11T04:30:00.000-07:00

What a great week at the Lake house. Happy, tired kids and happy tired parents. Someone told me I looked rested today, someone else said I looked like I'd been "hiking or something." All I know is that I had a great time.

We had Sage and her family come up for a few days, and while I didn't manage to get a picture with all the kids together, they got to do lots of things that they like. We went swimming at the beach, and went out on the boat and identified a rare bird for our neighborood. Jake got to chill on our hike, dribbling pine needles and rocks through his hands on the trail that used to be the train bed for the railroad that was built to supply the workers at Hetch- Hetchy.

Kids and grownups scrambled all over boulders and only one foot of one adult, and one foot of one child got wet in the fun. Not bad. There were very few scuffles amongst the kids that were not resolved in under 5 seconds, and every single one was caused by Lucy being in someone's space. If ever there was a child who wanted a big sister it's Lucy. Thank goodness we have so many close family friends who will be able to step in to that role over the years.

Jake wore a hat. Woot! This is something we've been encouraging for the last two years, and it is really feeling like we can almost call it a success. With a history of melanoma in the family, it's especially important that we do what we can to protect the kids' skin. He lets me put sunblock on his face now too. Those ears get sun blocked every day, rain or shine!

Lucy got to drive around with the roof open on Daddy's Jeep. Even better when Descartes went back to the Bay area for a couple of days I got to drive around in the Jeep with the music and the sunshine and the bluetooth connection, and the awesome handling of the car, it is really hard not to smile the whole time you are driving that car... especially if you are driving it in to Yosemite because Oh My there is so much there right above your head.

I took the kids in to Yosemite by myself on Monday when Descartes went back to the city to work for a couple days. It was exhausting and awesome. Being responsible for little people all by yourself a long way from home with no local safety net is apparently something that gives me a bit of anxiety. It also made me feel powerful, strong and very cool. I'm sure driving with the wind in my hair and sun on my shoulders helped me get through. Did you know I am younger, more beautiful, and always recycle when I am in that car? Did I mention that we love the car?

Lucy asked me to take a picture of her where she is holding up the biggest rock ever. I think she got these crazy photo ideas from Mali and Iz. I will be studying how to get proper forced perspective shots so we can get them over with. By the time I take her to Pisa I want to be able to get that cool shot with her kicking over the Leaning Tower.

Lucy is loving being a little Junior Ranger. In fact, when asked to wear a hero costume to camp past Friday she chose her ranger outfit with hat and vest, because she thinks Park Rangers are like "heroes for the planet." This is one endeavor I do not mind indulging so that means a pin purchase and stamps from the ranger stations in our little passport book. It's been a learning experience for all of us, because as it turns out I did not know that garbage that you might find in the National Park that is over 50 years old should be treated as a historical items. So congratulations all you hippies who left your soda cans in the campground, they are now artifacts!

We explored an area new to us in the Yosemite Valley, the Happy Isles Nature Center. Most of it was very wheelchair friendly, and we were able to park about two miles closer with the disabled placard making the actual hiking part possible. We've been very good about asking Jake if he wants to walk or ride. I forget sometimes that his low tone means that he really will be tired and might not even be able to walk well towards the end of the day.

He and Lucy have both been pretty good sports given each of their limitations. She's only 6, and her little self gets tired out seemingly out of the blue. I think her blood sugar drops and she just plummets. She goes from greatest kid ever to, uhm, not the greatest kid ever. We can fix that most of the time with something from the bottomless snack bag that goes with us wherever we go.
There is so much to see and do, and there are all of those animals and birds to check out, I'm not sure that we will ever get tired of this beautiful place. It doesn't hurt that there is pretty decent pizza and if we stay too late, there's that awesome, inexpensive all-you-can-eat buffet in the evenings in Curry Village. We even discovered that the Pizza Deck has good beer (and commemorative glasses!) I'm not much for Hefewisen, but on a hot day at altitude it sort of hit the spot.
There was an Independence day barbecue, which included an airshow, and music, and many multi-generational families. The world is small, so of course the table next to us had a family that had retired to the Lake from my hometown, and the father had worked with special needs children in his first years of teaching. His daughter went to my rival high school. And there were many people who just stopped by to say hello to Jake. What was nice is that they all said hello to him before they said hello to me. Jake thought the tiny pony was pretty funny but chose not to pet him.

We did a lot of boating on the lake. This kind of cruising makes Jake very happy. He happily wore his life jacket and made me feel at ease enough to sip wine. Some days we took the boat out once in the morning and again for a wine and cheese cruise. It is such a luxury, and I cannot thank my husband enough for his ease on the water, parking the boat, picking us up on other docks. He makes it all look so easy. For the big celebration we entered the boat parade and while they don't give out a second prize, apparently we would have won it. It was supposed to be an historic event, so my darling husband bought hula-hoops and we went for the gold with Olympics 2012. That's the London Eye and Big Ben. We also had a cauldron and the Olympic torch. Little Lucy yelled "GO USA!" for about an hour. We had no colored paint for anything, so if you'd like to know how to make latex house paint go from beige to slightly not beige we don't really know the proportions, but it took coffee grounds, coffee, soy sauce, and a dash of Worcestershire. Pathetic, but very fun. Big Ben is very textured, and smells just plain odd.

Jake went back to summer school and has had positive reports filled with happy sounds and "cooing" as his teacher told me today. Lucy is settled into a new camp where she swims every day, so that little fish is happy and completely over tired by 4:30pm. I am trying to get back to work after weeks of sketchy Internet service. And Descartes and I are both trying to get back to a world where beer with lunch is not normal, and there is no ordering two-for-one pina coladas for me.

Tomorrow is music in the park which we all enjoy, and it just makes me feel all the more thankful because it seems every city in which I rest my head, is a pretty awesome place. Cheers!

Dispatch from Another Planet

2012-06-23T07:32:00.000-07:00

I'm in an internet cafe in Mexico. It' not so surprising that I might be traveling, because our little family has done all sorts of great travel, but I'm here by myself. Well, not by myself, but without my husband and my children.

I miss them. It's hard not to because I have a funny husband, and cool kids who make me laugh a lot. We get along, for the most part, about most things, and we have a great time together. Just last weekend, for Father's day we took off up the coast and visited the Point Reyes National Seashore, adding another National Park to their list. We had the top off the Jeep and the music booming and there was singing and laughing and oysters and there was fog and sunshine, and a good time was had by all.

I'm also having a very lovely, and I might even say, a relaxing time being responsible only for myself for a few days. Of course I'm looking out for my girlfriends, because that's what you do when you travel with other people, but when it comes right down to it, I'm just me on this trip.

Stories slip out of my mouth reminding people that I have other roles, wife, mother, daughter, sister, but those people aren't with me, so no one walking by has any idea that my daughter is over 4 feet tall, and my son often uses a wheelchair, that my husband can build anything with those gigantic meat-hook hands. I'm just a blonde lady, who apparently almost looks my own age, when I have had enough sleep.

I've decided it's good for me to get away from my "every day" sometimes. I don't think I need to go to Land's End every time to get that same feeling, but I think it's hard to gain perspective when you are just so close all the time. Being a little more disconnected from teh interwebz hasn't hurt me either. Not reading what virtual strangers think about me has been a nice break, even if some of their ruminations show me in a kind light.

So I am off for a day of adventure with some wonderful, fun, compassionate women. Later I'll have some fruity drinks and watch the sunset, and before I know it I will be back to 'real life.' But for today, this is my real life, and I'm really happy.

************
Thank you, precious husband, for holding down the fort, and coordinating all of the people of our awesome village who are helping us care for our kids while I am gone. I am a very grateful woman.

Where Are you Going My Little One?

2012-06-12T09:44:00.000-07:00

My daughter, my baby, turned six yesterday.

She is beautiful and kind and quick and loves to curl up sweetly in my arms to start the morning. Each day I am equal parts terrified and delighted to be her mother. I know I will mess up a lot. I have already expected so much from such a small person, but she rises to the occasion, and I suppose, ultimately, so have I. She makes me rethink my inner core and calibrates my moral compass like no one else I know... except perhaps her brother.

And she loves her brother so much. She cares for him, she cares about him, and she cares about his future and the futures of his friends and classmates. Though she is always aware, and works hard to support his needs, she gives him only enough room to provide for disability, and after that she bickers with him as any other sibling pair might do. They fight over blankets in the car on road trips, and she saves half of almost anything good she has so he can have some when she gets home. The natural and easy way she accepts differences by not bothering to mention them unless she doesn't understand something, makes me have hope for her generation that there will be more tolerance in every way. She doesn't stare, she says "Hello."

She loves to drive in her Daddy's car, begging him to take off the roof of the Jeep, and sings along with the cranked up music, asking him to take the long way. She picks up jingles from television, and sings them too, with a rock star voice.. .who knew that the insurance commercials could sound so powerful? And when she's watching tv, she understands marketing, thinks that little girls should look like little girls, and not minitature grown ups, and knows to say "Can you add this cool toy to my list?" instead of flat-out asking for it.

She's not boring. She can carry a conversation, and knows who the president is, and about reproductive rights, the importance of voting, and with her proclamation: "You should be able to love who you want to." it's clear she supports equal rights for all when it comes to marriage, raising children, and living life. She has a crush on the boy who has long wavy brown hair, but has some thoughts about living with us for a long time. She's not yet sure she wants children when she grows up, and has thought about going to University locally (ahem, that would be Stanfurd). Her only thoughts on "leaving us" are to get a cool house with her brother to help him out.

She can be counted on. When there are times I urgently need her assistance with something because I don't always have enough arms to keep everyone safe, she makes it clear that every talk we've ever had is stored in her head, and she remains calm and helps exactly as she has been taught to. She always locks the gate behind her.

She is too much, over affectionate, loud, bouncy, "on fire"...she is a cross between Tigger, and me, I suppose, with a dash of initial reserve that is just enough to remind me that she is my husband's child too. She mostly puts all of her energy to good use, and though I wonder who she is when I'm not around, when we got a note sent home from her after-school care it included an award:

For being wise beyond your years, listening to others, and seeking not only to be understood but to also understand others.

I am trying to remember that she will only be this small now, and she is already taller every day. When she lies down in the tub, her hair streaming out like a mermaid, I can't help but notice that her feet touch the other end, and in another month or two she will need to bend her legs to to try to get that calm of peaceful floating. We'll need to find another place where she can feel light like that, because I want her to carry that feeling with her as she grows up and has more responsibilities.

*******

My precious girl, I love you more than all the leaves on all trees that

have ever been and ever will be, and then I love you more.

You are my best-favorite.

Happy Birthday.

Proud to Be the Crazy 'B' on the Bus: Just Say Something

2012-05-10T05:00:00.000-07:00

the cashier: Diapers eh? Expensive. I bet you can't wait until they are out of those.

me: Yes, we'll be rich. Uh, I have a special needs kid, so it may take awhile.

Oh, that's hard.

Yes, mostly for him. He gets frustrated. But he's doing great. He's a great kid. He goes to the Amazing Autism Wunderskool.

Oh, autism. Is he high or low functioning?

Well, those terms really aren't very accurate.

Oh?

No. For example, there are some autistics who will go to college, but may still have trouble putting their shoes on the correct foot. I have a friend like that. Does that make sense?

Yes. I get it.

My son has a lot of trouble with communication. He's non-verbal, so that makes it more challenging for him to communicate his wants and needs.

Huh. I have a neighbor. He's about 30. He lives with his parents. He's very severe; lots of grunts and sounds.

That sounds like my kid. I say "profound" instead of "severe."

Yeah, profound. Well he rides the same city bus I do, and there were some high school kids on the bus too, and they were teasing him. I told them to knock it off, and they did, for that ride. But the next time we were on the bus it happened again, so I stood up and yelled at them. I was probably a little more agitated than I had to be, but it made me so mad. They had no right. He's a great guy and they have no right. We go to the same pool, and you know, when he's there he is just so happy, splashing and laughing. He makes us all have a great time. Then those kids go and tease him, so you know what? I let 'em have it.

Wow, well thank you for standing up for him.

Well the bus driver thanked me too, but I didn't do it to get thanked. I just had to do it. It doesn't take much you know, it doesn't take much to just say something.

The bus driver told me that those kids call me 'the crazy old bitch' now. But I figure it's worth it. I'll wear that name like a badge of honor.

They don't tease that young man any more.

Snapshot of myBoy

2012-05-07T03:30:00.000-07:00

Jake had a most successful ride on the boat this weekend. Happy and snuggled next to me, comfortable (enough) in a life jacket, and following all the rules. He had a smile on his face nearly the entire ride, and was very happy. It means there will be many beautiful summer days ahead cruising around the lake with family and friends. And we are thrilled any time we can add another fun activity that is multi-generational and/or multi-family. I was very relieved, and it got me thinking about how much Jake has grown and matured in the last six months. When I went to look through the posts here to read his last birthday post I realized I never actually posted it. So here is a snapshot of Jake from October 2011.

******

Jake turned eleven a few weeks ago, and before another moment goes by I want to remember a few moments of him at this age.

He has trouble sleeping. Often he will fall asleep early in the evening, then wake up from 9-12 and wander around his room, laughing, playing with toys. If you go to his room he will run to his bed and pull the covers up over himself, but tap the bed to encourage you to sit awhile. He still loves it when I sing to him, and he'll let me pet his hair again after many years of not being able to be still. He lets me share a pillow as he tries to fall asleep.

He's always loved the beach, then he loved the shoreline, and now we've added water. First he jumped into the deep end of a friend's pool (like all the other pre-teens there), then he went in the lake, then in another pool, and another. He's not as stable as he'd like to be, but he will hold hands without clenching me too tightly, and he loves it when all four of us were together splashing in the water.

He eats the rest of my lunch that is sitting on the counter, the minute he walks in the house after school. Then he waits at the counter tapping his fingers until I serve him another snack. He's rail-thin, and constantly moving. His hollow legs fill up with an hours-worth of snacks until I can bear no more and force him into the backyard to play. When I turn my back he walks around the kitchen until he finds the one food that was not "put away" -a pear. He takes a big bite, laughs and throws the pear onto the counter before slipping outside to play in the afternoon sun.

He can get in and out of most cars now by himself. Motor planning has never been easy, but he's got it now. And he can "scootch over" in a booth--if he wants to. The more his body cooperates, the more brainpower he can use on other things.

Given the chance, he will sneak down the stairs and crawl out the dog door. It's a game now for him to see how fast he can get out there..will we leave a gate open? will we leave the dog door unlocked? will the door to the hallway blow open in the breeze allowing for his escape? Once he gets out he yells and laughs very loudly so I will know he's there, but I know he's there. No matter how much I try, I am always 45 seconds behind him, which is just enough time to get outside and make mischief.

He greets guests now, and says goodbye too, in his own way. A brief pass by and a gentle brush of his hand across your arm says hello, and more regularly he will walk you to the gate as you leave. It's possible he's just waiting for you to leave it open behind you, but he quite often will stand at the gate until your car drives away. He cares that you've been here.

On a day that's too hot or too cold, I ask him to settle in on the couch and watch a show-- and he does. He loves Mythbusters. I used to think it was fluke, but he will come in and sit on the couch if he hears the voices of Jamie and Adam. If the tele switches over to record a news program he leaps off the couch to find something else to do, or slides the remote control across the floor towards my feet.

He can take handful of cereal out of a box on the counter without spilling the entire box onto the floor; not every time, but most of the time. Regardless of his success rate, he's trying, and I think he sees the benefit; the more careful he is, the more independence he gains. And independence is what any eleven-year-old boy craves.

He's gained so much maturity in the last year. I really feel like he is taking the time to connect to us, which is probably because we are trying to do a better job of listening to him, however he is communicating. More than ever, we are offering him choices whenever we can, rather than assume what he wants, even if I know what the answer is probably going to be, because he deserves to have his opinion heard.

He is closer to being a young man than being my baby now, I know that, but I am thankful he still has some of that little boy sweetness left--just enough clings to his hair that I can remember his tiny baby face when I kiss him good night in the dark.

Remember Me

2012-05-02T03:00:00.000-07:00

I just retold a story to a friend about a life-changing incident that happened to me when I was five years old. It is so vivid: my little blonde curly-headed self standing there in the driveway next to my blue bike with the pink flowered banana seat. We didn't have helmets then, and I had already shed my training wheels. It was a sunny afternoon, like almost any other afternoon in Southern California, but that one conversation shaped part of who I am permanently. It is something I think about almost every single day, sometimes multiple times in a day.

One conversation when I was that young and those words, and what I did, those words inform my character and actions every day. I am 40 now, with a lifetime of education, and conversation and yet ten minutes, 35 years ago changed me, and for the better. I could have learned the lesson another way, farther down the road, but it made life easier for me having that knowledge early-on. And I am so grateful.

I won't tell the whole story because I know who reads this blog, or might read this blog, and telling the story out loud, here, would change it, and it would read the wrong way, and sound self-aggrandizing, but there is something that struck me as I shared the story privately.

What will my children remember?

I realized that I can remember so many details about what happened, and what was said. I remember being flush with shame, and wanting to take back what I had done, even if no harm had come of it. And I got a good look at how a face crumples when someone is disappointed in me. Then I realized that my daughter is almost 6, and if I can remember being that age, she will too. And my son, well, he's eleven and a half, so it's pretty clear that when he writes his memoirs I am in trouble.

The words I say, my actions, my goals, and the way I celebrate or despair, my kids are watching all of it. What imprint am I making? Am I giving them the right lessons to lean upon when they're 40? And what am I leaving behind after talking with friends over coffee? What do they recall later, after we have waved "goodbye" in the parking lot?

Luckily there is tomorrow, and probably many days after that to get this parenting thing, or some part of this thing right. I will mess up. I will be short-tempered, or hurry when we should have enjoyed the journey. I will never get it all mastered, but tomorrow I am going to do my best to make sure that whatever my children might recall of these years, some of it will be worth remembering.

Autism Acceptance: Growing Up

2012-04-19T06:30:00.000-07:00

I heard a crunchy sound from a mouth that should have been empty. It is a horrible feeling when I think one of my children has eaten something dangerous. We've been pretty lucky around here, the most inedible items actually swallowed aren't really inedible, the cut-off tops to strawberries, nibbles of wine corks, a little raw onion, a small piece of crayon; nothing really harmful at all.

So when I heard the crunchy, chomping-on-china-plates sound, I begged Jack to spit out what was in his mouth. He laughed as I followed him around the kitchen, and tried desperately to put my finger in the side of his mouth. Just as I was wondering how much worse it was going to be when he bit off and swallowed my finger along with the glassy sounding bit, he pushed a small white object out between his lips at me, and it bounced between my fingers and clinked like porcelain onto the floor. He smiled and ran across to the living room.

It was a tooth. His tooth, of course. He's still a kid who is going to lose teeth. All at once he is both too young and too old for that, but he's 11 1/2, so he is actually right on time to lose those molars. And whether I am ready or not, many milestones occur without regard for ability or disability. He grows physically, and changes mentally by the minute these days.

He's just at that point between being a little boy and a young man. In some ways, he'll always be my baby, just like I am my Daddy's "Jennyalice, " and Momma's "BabyGirl," but I need to remember that he is growing up. It's challenging sometimes to gauge things because his known abilities are so uneven and his expressive communication requires a patience on my part that I strive for rather than come by naturally. But even if Jack is not at grade level in math, it doesn't mean that he might not have crushes on girls, or start to have other new interests. We've already recognized that he is attentive to Myth Busters, and done with Dora.

I'm trying to stop using the word "potty," and use instead, "bathroom" or "toilet." I hold myself back a little bit when he is in front of his classmates before I smother him with kisses. When the topic of moving from one classroom setting to another came up at his school, I asked him what he thought, and what classroom he thought he should be in.

As a society we often infantalize people with disabilities, especially those people who do not speak typically. People who use AAC devices aren't always given credit for all of the nuance of thinking they may have because their device 'speaks' in straightforward, quipped language. And those who do not use devices at all are often thought to have no thought at all. In the absence of a clear, articulated sentence, it is still important, or rather, imperative, to consider Jack's opinion first in any situation that involves him, and to be respectful to ensure that, as much as possible, barring safety concerns, Jack be in charge of his body and his actions.

It would be easier to push and pull him where I want, maybe. It would be faster if I made the choices: vanilla or chocolate, green or red, apple or pear. It would be convenient to use only my desires to dictate where we go and what we do next. I'm guessing this is just part of the parenting process in some ways, when our children are young we control most of their environment, and some of that control naturally falls away with a typical child who asserts themselves with voice or physical action. With a kid like mine sometimes you have to look carefully for the cues that tell you to step aside. The longer I have this job, the more I realize that it is my goal as a parent to teach my children to make good choices on their own, and to support them so they are confident in the decisions they have made.

And as they grow older, I will encourage both of my children to give thought to what they want out of this life. As individuals they need to consider what is the best thing for themselves, for their family, and for their community with any choice they make. It may always be harder for me to tease out what Jack thinks is important, and to discover his desires, and I recognize that he may need help executing many of his choices.. but he deserves to be heard.

When all of those little baby teeth are gone there will be a precious, possibly-pimply, fuzzy, young man standing in my kitchen, and we should all want to know what he thinks.

a version of this post was the editor's pick at OpenSalon

Autism: Around and About and Aware

2012-04-12T03:30:00.000-07:00

We are on week two of spring break around here, and my lovely pre-teen son is taking nicely to sleeping in until 9:30am (thank you to Sage who is getting my girl to kindergarten this week!) While it usually feels a little frantic and unstructured during spring break, this year feels like some mostly calm time I've been able to spend with each of my kids, and around visits to the movies, day trips and the museum, I've been keeping myself busy.

It's Autism Awareness month. Since we are well aware of autism in this circle we have moved on to Autism Acceptance month instead. Thinking Person's Guide to Autism has a great "Slice of Life" series where we have given the same set of questions to autistics all over the spectrum. These are people in your neighborhood, in your classrooms. They work in the cube next to you, and skateboard at your local park. They are individuals, not statistics. Those 1 in 88s and 1 in 54s and all of that data that's been flying about? 'Those people' have always been with us, but we are getting better at spotting autism earlier, which will hopefully get everyone the support needed to be a happy, healthy, valued, and productive part of society. I know that "awareness" is still important because there are people that are ignorant, misinformed, or disinterested...even my spell check does not recognize 'autistics' as a word, and we have a long way to go, but we are focusing on acceptance around here.

I have another post up at Dandelion. I'm a regular contributor there, or at least I am when I can get my act together. Dandelion is a great resource for Bay Area parents, and is not just autism focused. I write there about three times a month. They have a very active events calendar, and happily take new events, so if you have a special needs benefit, auction, speaker series, or sibling group, head to their calendar and ask to have it added.

Last month Care.com asked me to write an article about Learn the Signs, Act Early campaign that the CDC has put together. It can be very emotional when you think your child is developing differently than other kids, but the important thing to do is keep your head on and check-in with a professional who can complete an evaluation of your child's development. With good information you can get your child every support he or she needs. I have more to say on this, and some good tips that I figured out when we were still figuring out our boy when he was very young.

The wonderful Ellen Seidman, who writes Love That Max turned over her Parents.com column this month to celebrate Autism Awareness/Acceptance. Shannon wrote a lovely post about Parenting Autism in the iPad and Internet Era.
Ellen asked me so great questions, including what are three things I want other people to know about my kid. My number one answer was: “Just because he can’t talk doesn’t mean he can’t hear you. Kind words, mean words, he hears all of it. With my son, and with any person with disabilities we should start with, “Hello.”” You can read the entire post here.
I'd like to thank Ellen for hosting us in her column. I feel lucky to have her on "my team."

And I am nominated at Babble.com as a Top Autism Blog for Parents. Thinking Person's Guide to Autism has been nominated in the "write-in" section too, so stop by and give us a thumbs up if you think jennyalice.com or thinkingautismguide.com serves parents well. Maybe one of these days I will either a) make it on a list that does not require someone to vote or b) stop feeling like I need to chase votes once I am on a random list. Next year I am going to create a list of Top Autism Blogs in My Family. I am pretty sure I will make the cut :) I was happy to see so many of my fine friends and their amazing words honored already, and knowing that we are all serving this community is a great feeling.

There are lots of other exciting things in the works. TPGA has been all over the radio across the country, so if you thought you heard Shannon Des Roches Rosa, you probably did. And we are working on more venues for book readings. I was thrilled to find out last week that an education class for teachers is using the book as classroom text. If you know anyone who is interested in using the book as a text in an educational setting please contact me: jennifer dot myers at gmail dot com. I am happy to help get the book out to you.

My voice is hoarse and my house is a mess, but my heart is full and my kids are happy.
Be well friends.

Autism Starts with A

2012-04-02T23:00:00.000-07:00

Awareness is understanding my son's struggles. It is determining all the ways he has to work harder and has to adapt to get what he wants. Awareness is seeking resources to help him gain skills, and it is patience, and learning. Awareness is eventually recognizing your own prejudices and privilege, and gaining new perspective.

Acceptance is 'listening' to how my son communicates, and waiting for his answers, then incorporating his desires into our family decisions. Acceptance is assuming that he has an opinion, is an individual, and is more than any label could constrain. Acceptance is reframing what I thought I knew about myself, and using new language without thinking about it.

Acceptance is shining light on the shadows of my preconceived notions of parenting, and what I thought his life would look like. Acceptance is loving every bit of him, knowing that one cannot, and that I would not, simply excise bits of any person to shape their mind to some measure of "normal."

Acceptance is supporting him, not so he can become who I want him to be, but helping him to become the young man he wants to be.

******
Paula C. Durbin-Westby Autism Acceptance Day
Steve Silberman Autism Awareness is Not Enough. Here's how to change the world.
Kassianne S. Acceptance vs. Awareness
Thinking Person's Guide to Autism Slice of Life: Aisling Alley
Lynne Soraya Stigma and the “Othering” of Autism
Mama Be Good You Can't Hate Autism and Expect Acceptance

Every Kid Is A Person

2012-03-21T04:00:00.000-07:00

I wasn't asked to have a conference with Lucy's teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions.

She is enough like me that I see myself --my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people's perspective on her whenever I can. We have lots of people who report about Jake to us, since he can't tell us his stories himself. There is even a journal that travels back and forth to school each day for Jake, but my daughter with her 31 other classmates... it would be impossible for any teacher to write a note about each child, each day.

Sometimes I get anxious before I meet with teachers; education is different than the business world where I am generally confident. I have a reverence for teachers, and admiration for their service. And they do something I'm not sure I could do each day. Teachers, especially those that have been around for awhile, really know kids, so any comment about my child from a teacher is founded on having known hundreds and hundreds of children, and those opinions carry more weight to me.

Of course the meeting went just fine. Lucy is on track and she is a good kid and she has friends, and she keeps writing the number 4 backwards. I saw a sampling of her work where I can see how much she has improved in just the last month with her letters and her coloring. Her pictures have great details and she seems to get the essence of the stories she hears. She's doing well. I was relieved, but I can't help but think there is more we should be doing.

Lucy's teacher and I chatted a bit more, debating piano lessons versus violin, tennis instead of soccer. Then about how being tall generally gets you more responsibility at an earlier age, at least that's what I experienced. And when Ms. June mentioned that Lucy shows a nice maturity she quickly told me about something that happened just today.

There is a 'little person' at Lucy's school, and apparently some children had teased this boy at recess. When Ms. June took them back to the class (after having the story related to her by the yard duty aide) she sat the children down to have a discussion about differences. They talked about how it would feel to be made fun of for something that is just a part of you. They talked about all kinds of differences there can be, and Ms. June said that as soon as the conversation started Lucy raised her hand. I am paraphrasing but I have now heard the story from both Ms. June and Lucy, and they each related about the same thing.

With conviction, Lucy told her classmates:

My brother has autism, and he has a wheelchair. He's different. But he still likes to decide things and make choices. We offer him two choices because he doesn't communicate like we do, but he still wants to decide things. Every kid is a person, so you should just say, "Hello." and ask, "How are you today?" because even if they don't talk like you do, you should still say hello.

There I was, worried about how far along she is in reading, and stressed about the number four... and as it turns out, some of the hardest things to teach, respect, accepting differences, presuming competence..she's understands those things. She knows her non-verbal brother has opinions and that he deserves to be heard. She knows that "every kid is a person."

And perhaps I am most pleased that she has it written on her heart to stand and be heard. I'm grateful that she could face her peers and unabashedly advocate for that young man, and she did it on her own without prompting or practice. I am so proud of her.

Tragedy, Sympathy and Empathy

2012-03-12T03:30:00.000-07:00

My heart is racing, and it makes me unable to breathe. Tears swell up when I try to talk about it. It is a tragic story that has our entire community reeling.

A student from my son's school was killed by his mother. Then she took her own life.

The articles keep indicating that she was overtired, had too much responsibility, and a lack of services keeps coming up. As one writer put it, she was "her child's nurse, his advocate, his playmate, his cook, his personal hygiene assistant, and his communicator. [She] was the mother of an autistic adult child. And she was her son's entire world, meeting his every need from the moment he was born. And she was desperately fearful for his future and exhausted beyond belief."

but she murdered her child, and that's the story.

If we let this story focus on the hardships of this woman, we are lost. The young man was killed, and it undermines that significance when we read in another article that one could understand what "would drive a parent of an autistic child to commit such a senseless act." Anyone who says they "understand" is reinforcing the idea that my son, and other people like him, are less valuable. It may be unintentional, but that sympathy starts to sound a lot like taking his life is somehow "understandable," because things were hard and the young man required a lot of help. It reduces a person into a list of burdens.

Yes, we need better services, but we have always needed better services. Yes, we need support for parents who are life-long caretakers, and better adult programs for that magic age when children become adults overnight. We need infrastructure and life-skills support for adults with autism. There was a program available for this family, but there really are not a lot of options when kids "age-out" of the education system. But these are all separate issues. These are the things we are working for. That's what we advocate for. And as for worry, there is not a single parent I know in this community that is not concerned about their child's future. Exhaustion, frustration, fear...

It is not a list of reasons why taking your child's life is justified.

A pile of pity on this mother is not going to bring about more services. Are you outraged? Then vote people into office that believe the special needs community has a fundamental right to supports. That might get more services. Talk to your neighbors about shared responsibility and humanity and dispel the myth that we are leeches trying to live off the system. Those things might help get services for people like my son and the young man who was killed.

And I do not believe absolution will encourage people to support me, or my son, or adults with autism. In fact it further ostracizes us; it makes us "other." As a mother of a child with autism I walk under a cloud of suspicion now. Will I snap? I'll have more people looking and feeling sorry for me as if I have an anchor around my neck--and how will that make my son feel? Most people would never stop to think that showing so much sympathy, not for the victim, but for the person who killed him, might make adults with autism, who may rely on a network of caregivers, feel threatened, and more vulnerable, like there is no one they can trust.

When it is even intimated that this killing was done out of mercy, it changes the value of my son's life. It says that his life is less worth living, but let me be clear there is no sliding scale on my son.

Maybe it's empathy that's needed. Empathy takes more time than sympathy, but if you are able to imagine life as my son then it would be impossible to disregard him. Looking at life through his eyes would give you a sense of what his needs are, and of course what services must be provided, but more importantly you would be able to see the relationships he has. You would see the snarky jokes he's in on and how much he loves his family. You would see that he has intent and tries constantly to communicate what he is thinking. You would see him as a person, instead of "person who needs to be taken care of." Maybe it would change things, but most of the time people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality.

And yes, Jack's life is challenging a lot of the time. But no one gets to say that he is less valuable because his life is hard, or because his life is not what someone else expected. He needs help with almost every aspect of his life, and will continue to need a lot of help, but he doesn't need pity, or mercy and if you think he does, why don't you ask him? I'm sure he'd rather have you talk with him than about him.

There are no excuses.

and we have so much more work to do.

for more perspectives, please see these posts:

Shannon Des Roches Rosa at Squidalicious: We MUST Do Better: Autism Tragedy and Transition to Adulthood
squidalicious.com/2012/03/we-must-do-better-autism-tragedy-and.html
Amanda Baggs on Tumblr: Another Murder, Please No
http://youneedacat.tumblr.com/post/19105518455/another-murder-please-no
Charlotte Moore at Thinking Person's Guide to Autism: Sam, at Nineteen: On Transitions and Autistic School-Leavers
thinkingautismguide.blogspot.com/2012/03/sam-at-nineteen-on-transitions-and.html
Laura Shumaker at SF Gate: Community Building 101 for Adults with Disabilities: FRED Conference provides actionable information
blog.sfgate.com/lshumaker/2012/03/07/community-building-101-for-adults-with-disabilities-fred-conference-provides-actionable-information
Kristina Chew at Care2.com: Why Autism Education Should Go Up to Age 25
care2.com/causes/two-tragic-deaths-and-why-autism-education-should-go-up-to-age-25.html?
Tiny Coconut at I Have Things: No Justifications
ihavethings.blogspot.com/2012/03/no-justifications.html

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

The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated.

This may be reposted with proper attribution and links back to this original post. I reserve the right to rescind the reposting of my material.

My Funny Valentines

2012-02-14T23:18:00.000-08:00

Valentine's day is filled with chocolates and roses and lots of those horrid balloons and white stuffed bears that only come out in February. We do none of these things. My daughter saw a balloon with a cat on it recently and said, "Let me guess Mom, you double-hate that one."

Descartes brought home some yummy stinky cheese and delicious bread. I usually make him a heart-shaped meatloaf (since I think he fell in love with my meatloaf before he fell in love with me), but this year I opted for Banh Mi one of my new favorite foods because what's not to love about these flavor-filled, flexible sandwiches? A new tradition is born.

We finished Lucy's valentine's cards just before bed last night...I felt guilty that I did not make cake pops, stick lollies to hand-made cards or shape hearts from doilies. She had no sense of this, being perfectly satisfied to give Phineas and Ferb, and Disney Princess cards to her kindergarten friends. Her teacher gave her a Disney princess card, as did half the class. Phew. And she didn't mind that her extra-special card to once certain boy in her class did not get her an extra-special card in return.

I went to Jake's Valentine's day party at Wunderskool. I had great intentions to make a special blah blah blah for each of the children in his class, and something even lovelier for each of the professionals who guarantee my child's health, happiness and safety while encouraging him to learn every day. I decided to show up instead. He saw me as I was walking in the parking lot and headed for the gate to greet me.

I love the look my kids get when they see me across the room, slightly unsure of how long I've been standing there. They grow so fast these days it can take me awhile to find them in their circles of friends and teachers, and they both have darker hair than I imagine they have when they are apart from me. When they see me, there is a smile that spreads across their face, and it fills me up, makes me whole again. Lucy generally calls my name as if she has just greeted a dear friend from college she hasn't seen in years, and Jake will touch my arm with one finger, tracing the space between the radius and ulna.

Jake took my hand and held it later in class while we were waiting for some treats. He took my hand and lifted it to his mouth and kept it there against his lips. Of course I was chatting away with the aides in the class, teasing Jake and his friends, so it took me a moment to register that he was kissing me, kissing my hand. I thanked him for the very nice kiss and he put his arm around me and pulled me in laughing. It's nice to have those moments with him, especially because he is eleven, and there aren't that many more years when he is going to want to hold his mom's hand at all.