Being Hopeful Is Never a Mistake

Over the last few weeks I scanned-in, then shredded, thousands of pages of our life, old documents that were taking up space. The guest room is not a place where old memories should go to die, and so I pulled out a giant bin and began re-living moments of pain, distress, and joy as I watched old bills, prescription leaflets, and holiday cards float across my table. I cried a little, smiled a lot, and more than once clutched a few sheaves against my chest wondering how we moved past some of the hurdles in our past.

I was amazed by how many pages I remembered instantly, where I was, how tired, or happy, or anxious the words made me at the time. When I hauled those bags out to the recycling bin, and there will be more of them, I poured in those pieces of paper and I knew these things:

1. I really didn't need to keep most of that paper in the first place.
2. I now have a digital copy if I ever need it again.
3. My brain has a lot more room in it now that it is not holding on to "Where is that specific paper from 2004?"

More importantly, sifting through all of those documents, medical and educational, family journal pages and scraps of paper, I was able to see how my son has grown. His IEPs have finally taken shape and the words on them really matter; there were milestones and he has met them. There were medical queries and they have been answered.

It is obvious that being hopeful is never a mistake. Before we used the words "presume competence," I can see that we tried, and as we've grown in understanding, we've expanded our thinking, changed our behavior, and developed expectations for ourselves and our family.

We're not done figuring things out, but at least I know there's a little more room to do it now.

*****

It's Autism Acceptance month at Thinking Person's Guide to Autism. This month we're asking our autistic friends and community members What Do You Want? What Do You Need? We'll be featuring their answers all month long, and if you'd like to be a part of it, please email us at thinkingautism at gmail dot com.

If you haven't joined our Facebook community, get in while the gettin's good. We've doubled in size since January 1 of this year!

Parenting in the Park

arbitrary

I took both of my children to the park the other day. It shouldn't be some sort of big announcement that a mom takes her kids to the park, but I was by myself with my two children, who have very different, needs, wants, and abilities, and I am a chicken. There. I said it. I am a scaredy-cat when it comes to taking my kids out into open, uncontrolled situations by myself, unless Jake is buckled into his wheelchair. He has escaped my grasp so many times, wrenching my shoulder as he goes; and he is fast. And as mature and amazing Lucy is at 5, she really is still a small child who deserves to be looked after on a busy street, or a park... but it is summer, and my children are convincing, so I took them.

Lucy providing high direction, high support

Lucy was very excited about playing in the cool water fountains that are shaped like Crayons. She got to learn the word "arbitrary" when I remembered that the park and rec department turns off the sprinkler fountains between 12pm and 1pm, and again from 3pm to 4pm. Because, apparently we cannot decide for ourselves when our children should have lunch, and a snack. It worked out fine because she got to play in the water puddle that had already been created, and managed to put together an engineering plan to create a dam that rivals the Hoover. She had no problem hiring the one of the unnamed boys near her to hold 'on' the foot sprayer nozzles to collect water, and the other to bring the bucket to her building site. She seemed like a decent overlord boss.

Meandering with Purpose

Then there was Jake. Precious boy who I forgot to put in bright orange before we left the house; I am rather particular about this. When he goes on a field trip, to camp, into the woods, into a crowd, okay, when he goes almost anywhere I put him in yellow, but more often, orange, actually, bright orange. He has his own hunter-safety-orange cozy jacket for camping trips. The afternoon we "lost" him in dappled sunlight when he was only 6 feet away from us was the last time I let him get near any vegetation without an easy way to spot him.

Can you see him? Yeah, Neither can I.

So of course the first thing he does is head for the only corner of the top portion of this park where I would not be able to see him. I didn't worry a bit because the chain link fence runs the entire way around the park. But wait, I couldn't actually see that corner post, and what if the fence were made by two brothers who got in a fight half way through the project and so there are really two corner posts, and a gap between them which leads STRAIGHT OUT TO THE STREET. I was only about 40 feet from him, but if that corner was open, which I knew it wasn't, but if it was, he was only 20 feet from cars pretending to drive 30 miles per hour.

myBoy in urban camo

I ran. I ran as fast as I could, and I lost a shoe on the way because I am an idiot and had thought, "Oh I can just wear my sandals because I am going to sit and watch my children play, and I will put my toes in the warm sand." I ran across the tan bark that my son loves so much with one open-toed sandal and one bare foot, and there he was, in the corner, where the fence was perfectly closed and built to code etc. I tried to give him some space, but it was very hard for me to not be able to see him, even if I knew there was no way out except past me.. because maybe today was going to be the day when he gains that fence climbing skill? We just never know. And if you are wondering if he laughed a little bit when he saw me plucking tan bark out of my sandal, the answer is, "yes." I let him play in the corner until he was done, and it may be my imagination, but as soon as I stopped being riled up about it he stopped going back there.

ooooh so close to escape.

Our visit to this little neighborhood playground, it wasn't all bad, or scary. On the busy street I had to parallel park between two cars that were over their little hash lines into my space, but we did get the safest spot, right next to the path that leads to the park. And every single family that went through the gate on that path, closed it behind them. The weather was beautiful, and Lucy was a good listener the entire time, which was pretty remarkable all by itself. When it was time to go, she left the park without complaint or stomping of the feet.

And while we were there, Jake got to work on those motor skills that are so important. He practiced "jumping off", which is different than "walking off", of something. I got to practice letting my son be outside of my grasp, which feels a lot like being "thrown off" of something. I did put my toes in the sand for a moment, and the kids had a great time playing.

There will be a day when my children don't want to go to the park, not like this at least. An afternoon will come that my daughter doesn't ask me, even one time, to play with her. It's possible that Jake will live somewhere without me when he's older. I want my kids to remember playing and running around. I want the smell of sunblock to remind them of all those days of being in the sunshine in our beautiful park-filled city. I'm trying to remember that these are the days when we should paint, or make lemonade.. or do as Lucy has asked and have a lemonade stand with a painted sign.

And I am trying to get over my fears that by myself, out there, in a park, or on a walk downtown, that I won't be able to keep both of my children safe. I know I am perfectly capable, but there are so many ways things can go wrong, and I've thought of them all. My brain hurts quite often with all the "choose your own adventure" stories in my head. However, I'm aware that emotion does not make fact, nor does a lively imagination, so the truth of it is, that most of the time, everything goes just fine. Everything will be okay, or it won't, but fear has very rarely led to anything good in this world, and it certainly has kept me from some beautiful days in the park.

  *****

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

Acceptance

the kids four years ago August 2006

The Goodnight show is teaching the word "sibling" this evening.

myGirl: Oh! I can call my brother my sibling!

Daddy: Yep. You're very smart sweetheart.

'Nina' on television: Do you go to school with one of your siblings? That can be fun!

myGirl (to the television people): Nope. I do not go to the same school as my sibling.

myGirl (excitedly, to her dad): Hey, when I grow up and I have autism like Jake, we can go to the SAME SCHOOL!"

Daddy: Oh sweetheart, you aren't going to have autism when you're older.

myGirl (slightly deflated, then with building enthusiasm): Oh...well, that's okay. When I grow up, my girl will have autism, and SHE can go to the same school as Jake!"

Daddy: You mean your daughter?

myGirl: Yes, my daughter will have autism, and SHE can go to that school!

The Truth of the Matter

Jake usually has a hard time readjusting to life after anesthesia. I remember getting my tonsils out and crying and fighting with my parents for days afterward, my emotions a raging mess. There's a term for it: post-surgical depression, although the term seems to be used interchangeably whether you are discussing the depression after surgery, or the recovery from anesthesia. I suppose most people under general anesthesia are probably getting surgery, so perhaps people don't stop to figure out where the depression really comes from, is it the emotional release after a stressful event, or the medication itself, but back to my point.... Jake has a really hard time.

Once a year he goes under general so he can have routine dental care. It is not cheap, but it sure is effective, and the dentist and the anesthesiologist are both so wonderful, I can't imagine not going back to them each year.

The first time we went it was after I saw something red on Jake's tooth. Sadly it was a cracked tooth, half of it missing, and the one on the other side was cracked as well. And of course we have no idea when it happened or how, but we think it may have occurred from coming down hard on his chin and his top teeth banging down on the bottom during some fall he had at the end of that summer. After we found those cracked teeth they were extracted, or at least what was left of them was extracted; He also grinds his teeth terribly. Then we put spacers in, cleaned his teeth and sealed them.

Another year it meant replacing a spacer which had disappeared (did he swallow it?) and filling a cavity. This year it was simple, remove the spacer (one was gone already...again) and clean his teeth. No cavities, no spacers. His teeth are in great shape. I attribute this genetics mostly, but also to the minor but consistent work we do getting Jake more used to a toothbrush in his mouth (a tooth brush that is actually moving and not just being chewed on) both at school and at home. We also make sure he has water every night before bed, he eats a lot of crunchy, plaque clearing food, like apples, and he doesn't have sugary juices all day long. According to our dentist, it's not the amount of sugar you take in, but the duration that really gets the teeth. Eating a pound of gummy bears in one sitting is less damaging to your teeth than drinking from a sippy cup of juice all afternoon. Thank goodness, because I let him eat a pound of gummy bears just the other day.. kidding.

So the joy of no tooth problems has been slightly overshadowed now by the aftermath of the anesthesia. He spent all of Thursday, after the dental work in the early morning,  being groggy and unstable. You think that kid has ataxia on a regular day, add a touch of Versed to that cerebral palsy and see what happens. I could not be farther than 20 inches from him for most of the day. He was starving on Thursday too, after needing to skip breakfast, and we just never caught up on the calories. It seems like he ate or fell down all day long. More problematic was the "bad butt" Jake had Friday and Saturday. It's like his gut just rots, or perhaps we let him eat too much cereal when he begins to wake up, and that's what actually affects his system. Either way it is not pretty for a few days.

Then there is the crying. The crying with tears just kills me. Both of my children can whine and cry and scream and yell, but if they show actual, real, wet, watery tears, 99% of the time it actually means something. It usually means one of them is in severe pain. The most upsetting emotional outbursts are when Jake cries with tears but without an obvious injury. It breaks my heart; he just sobs and sobs, and the tears slip down his face. It sadder than the Native American in that Coca Cola commercial. (How old are you that you know what I am talking about? Ha!) And the crying seems to come out of the blue. And he can't tell me whether his emotions are just welling up and spilling over because of the anesthesia or if there is a new, sad, unknown-to-mom problem.

And then there's the not sleeping. But I'm not really complaining, because this type of not-sleeping does not include yelling (at least not all night) or self-injurious or me-injurious behavior. Last night, Jake's sleeplessness actually came complete with chuckles, snorts and guffaws.

He was laughing and laughing.. and it was, by this time, about 1:30am. He just would not stop laughing. I had already been downstairs several times, perhaps every 15 minutes or so I had visited his room, and changed his pajamas each time.

Why? Okay, here's the truth.

Jake wasn't just awake and laughing, he was also taking off his pajamas (and diaper) and PEEING everywhere. Well, not everywhere, but in little puddles, next to his bed, in the hall, onto his pajamas. He thought it was hilarious. Each time when I walked him to the bathroom he would laugh even harder and try to go back to bed.

This is a big deal and not because I needed to clean up a mess or six, but a big deal in a much more exciting way. And I'll admit this is where I like to take credit for noticing small victories in the face of adversity, but this little game he's playing means Jake is getting closer to toilet training. This peeing on the floor thing is very typical behavioral development for NT kids (at least some (most?) of the ones I've met.) We have a long way to go, but he is learning and using his body in new ways with different awareness. And yes this is part of what I was talking about in that post about shame, but we are going to get there with good structure and consistency..but hey... Jake can now take down his own pants when he wants to pee! That is a huge accomplishment for a boy who does not have pincer grasp, and has a variable grip. Hooray for new physical abilities!

****

He's down there again this evening wandering between the hall and his room and Lucy's room-- four and a half hours past his bedtime and I know he's awake. He occasionally drops toys over the gate, or more likely a sippy cup because he knows I will bring it back to him, and I can hear his feet slipping across the hardwood. And one of my favorite sounds,  his muffled happy squeal as he buries his head in the pillows and blankets. 

So then, back to it.

This Would Make A Great Reality Show

The premise: Without getting divorced, or running off the road, between June 3 - June 16, can you...

• Plan three birthday parties for an almost four year old? Remember to include the guest list, the menu planning and any communication surrounding these parties.
• Wash all the slipcovers and pillow covers from two couches?
• Research, then buy, then install a room air conditioner?
• Take apart the entire dishwasher, wash all of the pieces, make a repair and put it all back together and have it still run?
• Butt your nose into the planning of your 20th high school reunion, send out a survey, then breathe a sigh of relief when the other organizers use the data you collected and take back over the planning?
• Answer 40 emails about reunion any way?
• Go to Costco three times and Safeway six times?
• Break down all the cardboard that has been collecting at your house since January, get it in the car, drive it down the hill and leave it for pick up on the correct day/week of the month?
• Work 18 hours a week at a "real job" with deadlines 6 days a week?
• Cry over a dead router/modem?
• Research, install, reinstall, call tech support, give up on tech support, then reinstall successfully a new modem/router?
• Have your husband out of town for 6 out of 10 days?
• Take your kid to swimming lessons?
• Watch a sappy movie about a puppy with your nearly four old, because life is short and she will only be a kid this one time who wants to snuggle and watch sappy puppy movies?
• Attend a benefit for a really great therapeutic riding ranch?
• Launch an amazing new project "The Thinking Person's Guide to Autism"
• Take your special needs son to the dentist where he undergoes anesthesia and subsequently must be watched for 8 hours so he doesn't fall down on his face.
• Buy your birthday girl a new outfit for her birthday, lose it somewhere in the house and find it again in time for her party?
• Forget that your special needs son who had dental work last Thursday is up all night, each night for at least a week after anesthesia, and cries easily?
• Clean out your mini van?
• Pick up the dry cleaning and wash all the black socks you can find in time for your husband to pack for his business trip?
• Attend an end of the year party for room one at the preschool.
• Clean out the refrigerator?
• Prepare the house for five family members and their one elderly dog?
• Remember to send a Father's Day Card to one of your dads who is traveling out of the country?
• Put together any items you will need in August for a cross-country road trip on an RV?
• Pay the bills?
• Do all of the kids' paperwork for March, April and May?
• Clean out your closet?
• Drive to another city to pick up a prescription for your snk's narcotics, then drive to two pharmacies to get the prescription filled?
• Feel like a failure because you can only see one way your daughter is going to be able to take cupcakes to school, and that's if Safeway makes them?
• Order a sheet cake AND a Belle princess cake at Safeway while you're there, because if you are taking the easy way out you may as well make your life really easy?
• Sleep at least 4 hours each night?
• Drive without falling asleep each day?

How a Person's Name Becomes an Adjective.

Have you ever thought about how language changes? How much faster it changes now that we have all of this technology and life moves so quickly. We add new words to our vocabularies every day, and sometimes words come about because of the actions of a person, eponyms, which I find fascinating.

The word lynch? Comes from Charles Lynch (1736-1796), a planter and justice of the peace from Virginia who "headed an irregular court to punish Loyalist supporters of the British during the American Revolutionary War."

Etienne de Silhouette was a French finance minister whose name became associated with these simple pieces of art, and "anything done or made cheaply" when he had to make some very tough decisions during a particularly bleak economy in 1700s France.

An abducted child became the "Amber alert", a legislator from 7th century B.C. gives us Draconian law, and

I'm afraid the name Smockity Frocks may have just become synonymous with someone who judges our special needs children unabashedly, and someome who, even when told of their grave error in mistaking autism for bad manners, has no room in their heart for apologies, only defensiveness. 

There has been quite a hullabaloo in the last few days over Smockity's post, "In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye" (which she has since taken down, but is available through a Google cache also: I am not the Jennifer that commented on her post), and with good reason I think. Her post basically describes an encounter at the local library with what I can only see, by Smockity's own description, is a girl with autism, and her caretaker. It's obvious by the way that Smockity openly mocks the girl and her grandmother's behavior, (while praising her own virtue),  that she must not have any idea she is making fun of a disabled person, because who would do that, in public? on their popular website?

And I probably would have read the post, possibly commented, then shook my head, knowing that the battles ahead will be many, and that just as we are no where near being color blind in this country, we sure as hell aren't close to tolerating people with disabilities.  I would have let it be, and signed it off to ignorance, but the comments! Agh the comments, many, many readers extolling her virtues, her patience, her parenting skills. And perhaps, is it possible that none of those people have ever seen someone with autism either? Or perhaps they think they all look like Rain Man? I doubt it, but perhaps. But when Smockity is gently, very gently, presented with the idea that the child may have been autistic I thought I would see a turn-around, an apology, a paragraph at the top of the post with something like, "I have left this post up, as a perfect example of how we judge each other without knowing and without love, and perhaps a quote from Matthew 7:

 ¹"Do not judge, or you too will be judged. ²For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.  ³"Why do you look at the speck of sawdust in your brother's eye and pay no attention to the plank in your own eye? ⁴How can you say to your brother, 'Let me take the speck out of your eye,' when all the time there is a plank in your own eye? ⁵You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother's eye.

Perhaps a quote from one of her readers "There are so many lessons in this one experience." Or maybe something about how she learned a little bit about herself, and about autism, and about how blessed she is all over again with her beautiful family, who has apparently been untouched by anything outside of the norm neurologically.

I know I would have come up with a few, more than a few, humble words to apologize for hurting so. many. people. And it's not just that she judged this one day in the library, but you know what myfriendConnie? We already don't take Jake to the library because of Smockities like you. And now it makes me wonder where else you are? and it's not just that you hurt us once, but now it is just one more story I sadly add to the mental file labeled "Painful moments I wish had never happened, or at least I wish I'd never heard about, because now I will always wonder if that's going to happen to me."

When we took our last big family trip to Hawaii over the holidays, there was a big old Smockity on the plane. He and his wife were sitting four rows from the bathroom, and on the way back to our seats, in the last 45 minutes of our flight after waiting, waiting for the bathroom and being cramped in there with me, Jake just could not take it anymore. As we tried to navigate back to our seats, I was holding back his arms, so he wouldn't touch anyone. I was telling him what a great job he was doing not touching anyone, when he clearly was touching everything he could when he got the chance. Jake broke out of my grip and in his effort to run (CP and all) down the aisle of the plane back to his seat, he put his left hand on that Smockity's shoulder, grazed his arm, touched his newspaper and made a really loud whoop-de whooo. Descartes heard Jake's distress call, got up and guided him the last few rows to his seat.

As I was running past the man who Jake had touched, not injured, just touched, the smockity man bellowed "What's wrong with that boy? Why can't you control your son?" His wife grabbed his arm and said something quickly, but he pulled his arm away from her and continued to glare at me, because of course I was so stunned that I was still standing there. He had decided there was something wrong with my child, and that I was a bad parent all in one fell swoop.  I apologized, of course, because I always apologize for my child's genetic and unalterable neurological condition, because even though we are not supposed to blame ourselves, of course this is my fault, everything about it, because he's my genetic code and I gave birth to him, and I left the house with him. So, I told the man that Jake is autistic, and asked the man if he was okay. Instead of *any* sign of grace, the smockity man harrumphed at me and went back to his paper. I went back to my seat and sobbed.

He saw us again outside, when we were waiting for Jake's wheelchair (which they inconveniently take to the curb in Honolulu). Jake slipped out of my clutches right as the man stepped through the sliding doors. I caught the sleeve of Jake's shirt and yanked him back to me, terrified that two more steps and he would have been under a car rental shuttle bus, or under the smockity man's foot. That man looked right through us. His wife, right behind him, smiled a half smile, which was the probably the best attempt she could make to apologize for her boorish husband.

Want to hear more stories? I have more. We all have them, any of us who have children that are outside of the norm, and these are just the stories of the people who said out loud their disgust or displeasure of having us in their presence. I don't know how many other people we've nearly made poke out their eye with a pen. Smockity's post makes me think there are hundreds, if not thousands more people who have been thinking ill of us and on the verge of self-inflicted blindness.

But lest you think that the whole world is filled with Smockities, on the return flight home from Hawaii, when Jake was *not* patiently waiting, and just wanted to go into the bathrooms that became available, a woman next to us, and next in line, said, "Would it be better for him to go next? Would that be better for him?" and of course I got all teary eyed, because it was the nicest, thing, said in the nicest way. It was also easy for her to give, and probably in her best safety interest since he was beginning to flail, but she didn't need to offer, and she never really even made eye contact with us. She wasn't trying to be friends, or even be the knowing mom, she was just trying to be a decent human being who could offer me this one thing during what was an obviously difficult moment for my kid.

It doesn't take much to help families like mine feel like we are welcome in the world. Let's start with being more kind. Let's take a deep breath. Let's think about how someone else's life might be very, very, different from our own.

1Corinthians 13:12-13 "For now we see in a mirror dimly, but then face to face. Now I know in part, but then I shall fully know even as I also am fully known. And now faith, hope, charity, these three remain; but the greatest of these is charity [love]."

What about this? A little less smockity, and lot more charity.

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

post script to my post. On March 30th Smockity Frocks posted this apology on her blog. I sent her a note thanking her for what I believe is a sincere apology.

An Apology

by Smockity Frocks on March 30, 2010

From the very beginning, I have always wanted this blog to be a blessing, something to help others, and never to hurt. I wanted to make people laugh, even in the midst of parenting trials.
It has become evident that I have not achieved that goal. I have unintentionally caused hurt and pain and for that I am truly sorry.
When I described a situation I observed recently, I was seeing in my mind and describing on my blog behavior that I have witnessed dozens of times in my own seven children and hundreds of students during my eight years as a school teacher.  The behavior I described was nothing more to me than childishness and impatience, but I can see now that the words I used were viewed as symptoms of autism and many people were offended.
The most grievous part, for me, is that this has brought dishonor to the name of Christ, and that is wholly the opposite of my life’s mission.
It is my sincere hope that this apology will bring healing and peace.
Given the nature of many of the emails I have received, please understand why I feel it is necessary to close the comments on this post.

The Man at the Door

The knock was firm.

KNOCK. knock KNOCK. KNOCK.

When I opened the door, the gentleman had leapt back off the top stair, and stood on the landing two stairs below the stoop. He is probably my age, maybe a little older, and between his two hands he is grasping a piece of paper very tightly, and holding it almost at chin level.

"Hello ma'am. I paint the numbers on the street, because it is very important if there is an emergency that the fire or the police know exactly where you live. I can paint the numbers. This is my business license. If you have any questions you can phone the city, but this is my license."

His intonation and affect on the wrong words throughout his pitch immediately quell that annoyed feeling I had, the one I always get when someone peddles at my door. I smile earnestly towards him, then he jumps up one stair and hands me the license. The edges of the paper are grubby, and wrinkled, but the center, where the information is, is perfectly, perfectly, clean.

"How much?"

"Thirty dollars ma'am."

"That sounds like a great idea. We really need to have that done. Do you take a check or just cash."

"I can take a check."

I tried to hand him back the business license but he was bounding down the steps with his grey tool box, and without turning around he said, "No, you should keep it. It has my name on it because it's my business license, and you can get my information for your check."

right.

I read his first name "Hendry" and sort of half-yelled down the stairs at him, "Is this correct? Hendry?"

"Yes ma'am Hendry H E N D R Y. My name is spelled correctly on my business license."

bet that hasn't made life any easier, huh, Hendry?

I closed the door to head upstairs to get my checkbook. I couldn't hold it in any more and I started to cry, sob really.

I went up the stairs and Lucy rushed over, "Momma, why are you crying?

uhm. deep breath. I never know quite how I am going to respond to her questions that have *really big* answers, answers that might shape her whole opinion about her brother or his classmates, or the entire world. I must somewhere be practicing speeches, in my restless sleep perhaps...

"You know how Jake is a special kind of kid? Well, the man at the door came to paint the numbers on our curb so the police and firemen can find our house in an emergency. The man at the door is a grown up who was probably a little bit like Jake when he was little. He was a special kid, and when mom sees a grown up who was probably a special kid like Jake, all grown up with a job, it makes Momma so happy that I cry." (She understands the happy crying thing.)

"You know how it's tough for Jake to do chores at our house, to do jobs at our house? Well, when Jake grows up he will want to have a job, and so it makes Momma really happy to see that kids like Jake can grow up and have jobs."

I write the check. Lucy stands next to me.

"Mom, Jake has jobs at school, right now. He has jobs Momma."

"That's right baby, I guess he does."

I finished the check for Hendry and walked it down the three flights of stairs to him. He was sitting in the street, painstakingly painting numbers on my curb.

"Here's your check. Thank you very much. Do you have a business card, I could recommend you or do you go door to door?"

"No ma'am I go door to door. I have my business license."

"Yeah, that's a great idea to have that. It makes it very official."

"It IS very official. I got it from the city."

"Thanks again."

and I made it back into the house before I started to cry again. This time I went to my room, where Descartes and I had been resting (since we were both sick). I crawled up on to the bed and sobbed. Descartes put his arm around me and pet my hair a little.

"Do you know why, [heave], I'm [deep breath] crying?"

"Yes dear."

"I'm sorry, I can't seem to stop."

"I know. This is why I don't Twitter."

"Why, because you would have to say something like "Grown man with autism comes to door, steroid-induced hysterics by wife ensue?"

"Something like that."

"I hope he doesn't get run over while he's painting the numbers. That's all I need is to explain to Lucy all about the grown up guy who was like Jake as a kid, who had a job, but is now dead in the street. That would really make me cry."

"Yeah, probably."

"Hey, you know? I would be crying even if I weren't on steroids."

"I know. I know. Take a deep breath. It's all good. We're all good."

While You Were Out...

So apparently the world does keep turning, even when I am not on Twitter, FaceBook and every other form of social media on which my moniker aspires to perch. I lost some followers, but since I don't even like that word it doesn't bother me much.

My family is on the mend too. February was a blur of illness and fever and snot, and for me it also included my first nebulizer, steroids and some heavy duty antibiotics.

Sage reminded me that probably the best lesson I could possibly learn from being sick for 25 days is to learn how to ask for and accept help. This is a big one for me. When I ask for help I feel like I am failing, like I am letting everyone down, and I hate that feeling.

I am grateful that my closest friends don't wait for me to ask them for help, and they jump in and shuttle my kids, cover my work, make me dinner, buy me groceries and call to check in on my feverish little self. I chose well, and I'm so glad they chose me back.

What is interesting to me is that I love helping people. It pleases me when I can make someone else's life easier, so why can't I just accept help...especially in the beginning of a problem so it doesn't spiral out of control later? I think I actually know part of the answer...Jake.

I feel like I am going to have so many BIG THINGS I need help with in life that I sort of don't want to use up all my chits asking someone to pick up two rolls of paper towels from the market for me. When Jake stepped on a three inch nail, I needed someone to take care of my daughter right there at that moment, and I had that in two minutes. I guess I don't ever want that feeling like "Oh I just asked her to do this little thing and that thing, so I don't really want to ask again for this."

Now I know I have close enough friends now, after being a part of both this special needs and the greater community, that I really could ask for just about anything and someone would help me. I know an amazing, powerful, get it done bunch of people, and yet I am loathe to ask for help. Even when someone is offering, and it's easy and they are already there, in the store, I feel like I am being lazy, or not self-sufficient. And even as I write this I sound like a ridiculous martyr.

Yeah, I know.. get over it. And I'm trying. I am.
and I really want to thank my friends for taking care of me and feeding my family here, and thank you, dear sister, for taking care of my sick husband and my babyGirl for those 3+ hellish days. Descartes could not have asked for a better nurse, and it is a darn good thing I sent those two to Tahoe, because I probably would be dead if I had tried to take care of Descartes that weekend too.

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

This morning Descartes got up with "all those children".. I have not slept so soundly in a hundred million years, just 1.25 hours past when I would normally get up, and I felt so much better. Sadly I think I get my best sleep between 5:30 and 7:30; these are also the hours when I have been nursing, or getting children ready for school for nearly 10 years. Oh my God ten years.

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

We took a hike this afternoon, not a long one, but just long enough for me to realize that I didn't do much walking for the past month. Jake did such a great job. He walked the entire time without dropping to the ground once or trying to run away. He held Descartes' hand the entire time up and down some steep hills. We went about a mile round trip, which may not sound like a lot, but when you have a kid with cerebral palsy that you don't think will ever walk.. it is life changing for our family... and yes, Lucy hiked in a princess dress, and heart-covered tights and pink converse with multi-colored stars. We were quite a sight.

Breakfast Cookies

(this is cross posted at (Never) Too Many Cooks where I had a sneaky little guest post.)

My son eats a lot of food. No really, a lot of food, and since he has a physical disability, he needs quite a bit of help at meal time. Breakfast is always a blur at our house, and in an effort to be most efficient, get out of the house on time, and offer Jake more opportunity for independence, we have tried every cereal on the market. They all end up in little pieces at the bottom of the box, or scattered all over the floor. So we want him to be able to feed himself, and it has to be fast, and his sister has to like it. Frustrated by the $4.00 price tag on 5 ounces of granola nuggets, I decided to try to make cereal cookies. This is my first try. It is basically a takeoff on any oatmeal cookie recipe, with cereal instead of the oatmeal.

I use a professional grade KitchenAid stand mixer and aluminum jelly roll (cookie) pans in a non-convection electric oven.

Ingredients

• 3 eggs (I used large, not extra large)
• 2 sticks of softened butter (I do not ever bake with margarine)
• 1/2 cup brown sugar
• 1/2 cup white sugar
• 2T vanilla extract
• 1 cup white flour
• 2/3 cup wheat flour
• 3/4 tsp baking soda
• 3/4 tsp baking powder
• 1 15 oz box muesli cereal (I used Safeway brand)
• 1/4-1/2 cup oatmeal (as much as needed to make the batter more on the stiff side.)

Directions

1. Pre-heat oven to 350F
   
2. Cream butter and sugars
3. Add vanilla
4. Add eggs one at a time, beat until smooth
5. If you are a good person you will sift your flours, baking soda and baking powder. But since you are not a superhuman, just try not to have any hard nuggets of baking soda or baking powder..then with the mixer on a low to medium speed, slowly add the flours, baking soda, and baking powder.
6. Mix in the box of muesli. You could hand mix at this point, but I have a heavy duty stand mixer, so I make it do the work.
7. Add in the oatmeal a little at a time until the cookie dough is more on the stiff side.

I use cookie sheets with parchment paper to cook most all of my baked goods. It allows me to place all of the batter onto the sheets, then I can slip baked goods onto the counter and a new sheet with raw dough onto the sheet and pop it back into the oven faster. No lag time between baking and I don't need to get my hands dirty very 13 minutes.

I tested three different sizes for the cookies. A 1 tablespoon dough ball makes a normal-size cookie, and was more on the soft side. A 1/2 tablespoon dough ball, made a small cookie, and would probably work just fine for most people, but I really wanted them to be "one bite" cookies so there would be less of a chance of my kid taking a bite then dropping the rest. I settled on a fat 1 1/2 tsp. So I just scooped up batter 1 tablespoon at a time and divided it into four little dabs. This made cookies slightly larger than a quarter, which was perfect for my family.

Bake cookies for 13 minutes at 350F, slightly less time if you want them softer; we wanted crisp. This recipe makes uhm, a lot of little cookies; it filled a 10 cup container.

I do not know how long these keep, they were finished within 3 days. Even my husband ate them (note to self: do not tell husband that muesli has dates or he will never eat them again). I have several other types of cereal in the cupboard, so I'm going to keep making different kinds until I can find the tastiest, highest protein, lowest cost, batch of breakfast cookies that my family will still eat. Once I figure out a few that work, my goal is to get a ton of cereal on super sale, then spend a day and make batch after batch of breakfast cookies, and freeze them in 1 gallon zip-top bags. I'm sure they will freeze well, since oatmeal cookies do. Of course the way my family mowed through them, it's possible I won't need to freeze any at all.

Hand, Hand, Frozen Fingers, Frozen Thumb

Squid interviewed me for this article about how children like ours handle truly cold weather.


1) How do your child's sensory needs color their response to cold weather?

Jake does not seem to notice hot or cold, generally speaking. If the covers fall off he curls into a ball. If he's hot in the summer he falls asleep next to his window on the floor. He loves the outdoors more than he dislikes the elements, and would happily play in our backyard well past the time a "typical" child would seek warmth. (This is a picture of Jake in our backyard in a little fish pond we no longer have because he would get into it whenever he had the chance no matter how cold it was outside.)

Because we have to be aware for him we try our best to clothe him in the most appropriate outfit for the cold. I try to wear a similar number of layers and fleece/wool combination so I can help gauge when he might be too hot or too cold. We spend hundreds of dollars each year to get him the new size of snow overalls (bibs), snow boots and gloves. Of all the children in the (extended) family, it is most important to get Jake's outfit right, since it seems to make or break any snow event for the rest of us.

If Jake is not comfortable he will whine or drop to the ground repeatedly until we remove him from the situation or correctly diagnosis his need. Once we figure out the problem, he will generally have a little more patience for us to fix the problem, but if we don't he lets us know he's done.


2) Can you relate a particularly memorable, related incident?'
My family loves to ice fish, and even hosts an ice fishing even each year (you should come... it's great fun!). To get to our favorite lake there is a very short hike, perhaps 30 yards up a berm and over the edge, then there is just a large bowl of flat easy walking. It seemed simple enough, and we really try to do things as a family so we all ventured out. We had a complete outfit for Jake top to bottom, he was even amenable to hats then, and really the only thing that wasn't quite working were his boots. They were just a little bit too big. This would be manageable for most kids, but Jake also has low tone so every step he took his little foot popped out of a boot. Then Descartes tried to carry him, and every other step, a hat, or a glove or a boot would come off. It was mostly funny, but so exhausting. Luckily my husband is strong enough to carry Jake, and we are smart enough to carry extra socks. Jake recovered eventually, but he was so frustrated the day was cut short. (I am pretty certain this is a photo from that day.)

3) Have you had to modify your family's routine or lifestyle (or location) because of your child's response to cold weather?

We have realized over the years that Jake is happiest with 20 acres at his disposal, his parents watching from a distant perch on the porch of a log cabin. Since we no longer go to Montana every summer (why can't everyone else just stay married dammit? We did!) it is a bit harder to find a free range outdoor spot where we can see him and keep him away from traffic. Luckily my sister lives in South Lake Tahoe, with a large back yard and acres of woods behind her house.

Descartes and I made a plan several years ago to move to Tahoe. We love it there: supportive family, beautiful scenery, reasonable cost of living (compared to the Bay Area). We researched available businesses for sale, did due diligence on a sporting/outfitters store and began looking into financing. We started talking about selling the house.. the whole deal. We went to Tahoe on a Friday night, giddy with our plans, sipping wine and laughing with my sister and brother in law about the great life we would have. In the morning, after a fresh snowfall we went to play in the backyard. We bundled our tiny new baby in a bunting and set her on the snow. All wrapped up she giggled and watched as her brother ran around the yard. Watched as he flailed and tore off his hat, and his gloves and hopped out of his boots. We got his boots back on, eventually. We ended up duct taping his gloves onto his jacket with his hands sort of stuck in them. I'm not sure he has ever worn a hat since that day 3 years ago.

When the gloves came off again we were done with the whole thing. Exhausted, we stripped Jake down inside the house and realized that we could never live in a climate any less temperate than the Bay Area. Overnight lows in the 30's perhaps, but winter days in the teens? Though the benefits of family support were so tempting, the idea of epic struggles every single day just to stay safe was just too daunting. If not winter and gloves there would be summer and sunglasses. Tahoe kids wear gloves half the year, and things like hats and sunglasses year round.

We were very sad. It is hard for us to admit defeat; we make plans and we execute them. We don't know what our family would be like without autism so we just keep plowing on making choices and dancing through this life, and most of the time we are happy and strong, but sometimes we are stopped. Of course we could make it work, living in a place with "real" seasons, but would that be fair to Jake, being tortured daily for months on end? Would it be fair to his younger sister to have to wait 20 more minutes each day while we get her brother dressed, the little girl who already has to "wait", "hold on!" and "be patient" constantly?

We still play in the snow, but this New Year's day we played in the front yard, as close to home as we could be, and instead of wearing gloves Jake just went inside every 15 minutes or so and got warmed up. Sure we missed the big sledding hill, but we made a cool snowman and an ice fort, and all of the kids were happy, which of course, kept all of the parents happy too.

Shattered

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

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

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

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

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

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

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

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

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

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

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

WunderSkool Here We Come!

Jake has been accepted into the program at WunderSkool! I know it may not truly be a panacea, but today it feels that way, and darn it, I am gonna take that feeling and savor it for at least a few days. We already have the transition meeting arranged.

and... there might be room for Lucy at the local awesome day school... what to call it? Maybe Woodstock? They will call me in the morning.

and...I found sweatpants at leTarget for Jake for to use as pajamas at camp.. he leaves *tomorrow* He is very excited.

and... no one is sick at my house

Howz 'bout in celebration y'all forward an email to every person you know and get them to sign that petition we've got going!

Ask Mrs. Obama to help form an Autism Corps. Please sign the petition http://tr.im/sa3y and while you're at it, join the Facebook group! http://tr.im/sbWD

Have a great day.... I am!

Things that Make Mommy Want to Double up on the Wellbutrin

• Clock reads 7:54am and I can see that with my head on the pillow next to Descartes' head, and I can see he has his eyes closed. Jake should be at school at 8:00am. [family flies out of beds and races around]
• Being told that Jake "hit" a woman in the hall yesterday.
• Upon further questioning, discovering that perhaps Jake just had his arms spread out wide and grazed her as they were walking through the wall.
• Being told that the difference between hitting someone and grazing them as you walk past is "semantics".
• Trying to leave an environment before you "graze" someone, and trying to endure people who want to chat with you.
• Bursting into tears in front of your toddler.
• Explaining to a little sister that their big brother is very unhappy.
• Hearing the little sister explain to me that "Jake just doesn't want to go to the classroom with BB because I don't think hims likes her."

Christina Chew Posts on the Autism Corps

Kristina Chew has posted an article at Change.org where she shares our petition and how her own family would benefit from one-to-one care for their son Charlie.

I am without childcare this week. Jake's aide spent part of the weekend in the hospital with a high fever, victim of the flu (I wonder if she got her flu shot this year?) . She was tested for H1N1 and thankfully does not have it. But back to my point... I have no childcare this week, and I will be fine.

The reason it will be okay? I know it's only one week. My husband will take on a bit more of the evening routine, knowing that I will have a little less patience in me after competing the witching hour on my own. He will be kind when he is served the tuna noodle casserole I made yesterday. I can do anything for a week, possibly a year, but what if I felt the desperation of knowing that there was no one to help me...ever...

What if I was a single mom? What if I had more kids or more than one child with autism? What if I had to make a choice between spending money on childcare or feeding the child?

An Autism Corps could make a difference for families. It could change the life of adult autistics who just need a little (or a lot) of support. To gain a perspective we don't have, Shannon and I have been joined by Rachel Cohen-Rottenberg and Lindsey Nebeker, two adults on the autism spectrum to work on the Autism Corps strategy. This is important because many adults with autism do not feel represented in the current dialogue.

I am reminded daily by my son's pile of clothes and shoes that are too small, that he will grow to be a man, and that man will still have autism and will still need help. He will also, most likely, out-live me, leaving more than just a week without care.

Please sign our petition http://tr.im/rNdE

Another reason this place bugs me

just what the hell are "sneekers"?

AND... patience wins again.

Bursting with happiness right now.

Happy little girls (Lucy and her friend Lil' Miss) destroying the living room and sending dollhouse contents across the hardwood floor.

Jake playing quietly in his room or in the backyard with his rocks and a tambourine.

and one phone call, one little call...

that let me know that Jake can be evaluated by the Amazing school!

Life is full of possibility again! He will visit the school two weeks from today to see if he s a good fit. Phew. I can breather again.

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and to top it all off, our petition was Site of the Day at Terri's Special Children blog at About.com

follow AutismCorps on Twitter

Hope. Fail. Wish. Cry. Pray. Wait.

I was sent a prayer that was attributed to a Saint today, and of course I had to research it; please don't forward me stuff, seriously. As it turns out it was actually a New Age well-wish type thing, but in doing my brief research, I did find another prayer, and while I think I was a little embarrassed*** to post a prayer on my blog it spoke to me:

It was written by St. Teresa of Avila who lived in the 16th century:

Let nothing disturb thee. (Nada te turbe)
Let nothing frighten thee. (Nada te espante)
All things pass away. (Todo se pasa)
God never changes. (Dios no se muda)
Patience attains all things. (La paciencia todo lo alcanza)
He who has God lacks nothing. (Quien a Dios tiene nada le falta)
God alone suffices. (Solo Dios basta)

And today it spoke to me, because it feels like there are so many things out of my control in my life right now. I have a little, or even a lot of input into each, but the final way things go is dependent on someone else, and I do not like that feeling. I want to shape or fix or make happen Jake's fall placement for school, my precocious daughter's defiant behavior, my husband's need for a challenging career, the ever-growing amount of paperwork, the budget cuts, my son's toilet training, our summer camping trip, the amount I pay Verizon wireless each month.

When I visited a possible new school for Jake last week I had an amazing feeling of hope and

optimism for nearly 24 hours, from the time I made that appointment in the afternoon, then the next morning through the interview and the visit to the classroom and the entire drive home. I felt buoyant through phone calls and emails... until I got an auto-response from the Director of Special Ed saying she was out on vacation (and therefore unable to give approval for Jake to be evaluated by the school).

My day was so carefree. It was shocking how much I got done the night before that visit, how pleasant nearly every moment was, how much easier it was to deal with a pile of dirty dishes, or a child who would not go to bed. Everything felt smooth and shiny. I was saddened to figure out just how much Jake's development and school placement has been weighing on me. That it weighs on me every day and impacts everything I do. I also realized that people who don't experience this feeling really do have different lives, which I like to pretend isn't true. It must be so much easier to go through life like that. I almost remembered that feeling I used to have when Descartes had just finished business school and we were newly married and I had this fantastic career thing going (one that paid me): I used to be invincible. And then that damn auto-responder kicked back that out-of-office message and I was left again with that sinking feeling. And again our fate is left to someone else, no matter how many emails I write, I don't get the final say.

I just got an email from another possible placement who welcomes me to visit the school but warns there are no Fall placements available, because of course this is all so last minute.

back to my other business now... wish me luck with the patience part.

***I don't think it's a secret that I consider myself a Christian, that I have taken a few leaps of faith, and have even officially joined a church (thanks sister :)), but I think sometimes I am embarrassed by faith because I cannot pin it down or prove it with science. I want to have faith, so I choose to, or I try to be open to receive that gift, but it doesn't always sit well with me, and sometimes I am also quite convinced that I am just a bunch of cells waiting for apoptosis. I am not one of those pray on the street types of people. I am not ever quick to think that I know the only way, at least when it comes to religion, and I am quite certain that, having made the choice to believe in a higher power, I am not the one who should judge others.. not who they love, or what they call their God, or how they pray or what they eat or the house they keep. As long as your beliefs don't harm me, or my children.. or your children (and that's a fuzzy line) then believe whatever you want, and let me do the same.