Written In The Stars

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

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

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...

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:

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

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

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

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.

Autistics Speaking Day

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

Autistics Speaking Day

A Cup of Kindness

My dry cleaner retired.

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

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

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

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

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

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

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

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

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

Your dry cleaner will buy you coffee.

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

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

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. 

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.