20 December, 2012

Making Sense of Sandy Hook

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







09 November, 2012

I Stand Here Ironing

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.

01 November, 2012

Autistics Speaking Day

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

24 October, 2012

A Cup of Kindness


My dry cleaner retired.

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

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

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

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

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

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

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

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

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

Your dry cleaner will buy you coffee.

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

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


02 October, 2012

My Not-So-Little Tween

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. 




10 September, 2012

Chances Are

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.







31 July, 2012

A Little Rain Must Fall


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.



25 July, 2012

On Our Anniversary

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.

23 July, 2012

Scarborough on Autism

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."



Visit NBCNews.com for breaking news, world news, and news about the economy


 "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

11 July, 2012

Busy Days of Summer

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!

23 June, 2012

Dispatch from Another Planet

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.



12 June, 2012

Where Are you Going My Little One?

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.

10 May, 2012

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

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.

07 May, 2012

Snapshot of myBoy

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.






02 May, 2012

Remember Me

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.

19 April, 2012

Autism Acceptance: Growing Up

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


12 April, 2012

Autism: Around and About and Aware

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.


02 April, 2012

Autism Starts with A


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


Related Posts Plugin for WordPress, Blogger...
all writing by me © 2004-14 (unless otherwise noted)
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.