Just Say Something

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

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

Oh, that's hard.

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

Oh, autism.  Is he high or low functioning?

Well, those terms really aren't very accurate.

Oh?

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

Yes. I get it.

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

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

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

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

Wow, well thank you for standing up for him.

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

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

They don't tease that young man any more.

Snapshot of myBoy

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

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

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

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

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

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

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

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

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

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

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

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

Remember Me

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

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

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

What will my children remember?

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

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

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

Autism Acceptance: Growing Up

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

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

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

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

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

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

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

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

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

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

Autism: Around and About and Aware

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

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

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

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

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

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

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

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

Autism Starts with A

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


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

Acceptance is shining light on the shadows of my preconceived notions of parenting, and what I thought his life would look like. Acceptance is loving every bit of him, knowing that one cannot, and that I would not, simply excise bits of any person to shape their mind to some measure of "normal."
 
Acceptance is supporting him, not so he can become who I want him to be, but helping him to become the young man he wants to be.



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

Every Kid Is A Person

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

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

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

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

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

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

With conviction, Lucy told her classmates:

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

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

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

Tragedy, Sympathy and Empathy

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

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

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

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

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

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

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

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

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

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

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

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

There are no excuses.

and we have so much more work to do.

for more perspectives, please see these posts:

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

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

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

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

My Funny Valentines

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

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

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

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

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

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

And Then I Was Forty

My daughter had to count to one hundred tonight for her homework as part of the celebration of the 100th day of school. She also had to put one hundred things in a bag to share with her classmates. Candy would generally be her first choice, but we settled on little slips of paper of places we could think of that she has visited.

The list was pretty easy to come up with, which is a little surprising considering she's only five years old. And it's a good list, with lots of states and beautiful national parks, inspiring monuments and small and large towns spread across the country. It made me proud that we are showing her the world.

Of course every place on her list is a place on my list too, if I were to indulge myself the time to make such a list... and I was tempted to think of every little town my husband and I visited in Europe that one summer. What was so interesting to me is that so many of those places on my daughter's list were places we saw together for the first time.

and that made me smile, because I am only forty, and there's a lot more to do.


I am not ashamed of getting older. I don't really care much about crow's feet. I've been 'long in the tooth' for a long time, and this bust line needs industrial strength reinforcements no matter what age I am.

I have accomplished so much less than I thought I would have by this age, and I know because I still have the lists I made when I was twenty and life was spread out before me. All I needed was a pen and some college-ruled notebook paper and I was in charge of my destiny. With a scribble I planned three children and graduate school, trips around the world, and a vegetable garden; I would learn to can my own food.

Once life got rolling it was hard to stop, and no little list is going to dictate when you actually fall in love any way.  There were subsequently no plans for things like a broken leg, or home repairs. My list did not have a six year gap between having my children, and no one had a wheelchair repair scheduled annually.

But I am finished with those lists, because I have done so much more than I thought I could that it is really hard to be disappointed. I have experiences in my life that my little 20-year-old self couldn't imagine if she tried, and they haven't all been great, but I am better for them. I am a much stronger, funnier, capable woman than I had imagined I'd be. I am less restless, and more adventurous. I love more deeply than I ever thought possible.

and I'm not afraid like I was when I was younger, worried I would never get a chance to check off each thing on those lists.  Now all those places I've gone, the things I have learned in just these five years of my daughter's life, the eleven years of my son's life, the fourteen years of my marriage... they lead me to believe that there will be hundreds and hundred more places I will visit in the next forty years, and I can't even imagine all the things I will get a chance to do.


(p.s. I did do a few things on that list)



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

Blessings

I have been joking lately that the past decade was a 'little rough', but that the last nine months have nearly made up for it.  It's not like we didn't have a whole lot of amazing, awesome things happen in the last ten years, because we did...children and new friendships and a cross-country trip, but lately it feels like things- all of those pieces are finally coming together. For as little sleep as I've had in the past few months, I feel more forward momentum again. My kids are so in-sync at school, and they are each developing into such beautiful people. My husband is happy, which always make my life happier. He loves the people he works with, and he's got plans to build tree houses. And I got an ice machine for Christmas.

That ice machine is so completely unnecessary that when I opened the box from my husband,  I cried. It is just something I want, and he gave it to me just so I could be happy. We don't need it. It doesn't fix anything that's broken. It's not for the kids (though they like it too). It's for me. I like ice. I hate ice trays and I have always wanted an ice machine. The little automatic refrigerator one won't work without a $40,000 reconfiguration for the kitchen, so Descartes found one that fits into the window box behind the sink and voila: refreshing beverages.

I'm not that pleased that it was a material good that tipped me into the "feeling blessed" category, but I know that it did, and once you tumble over that line, it becomes so clear all the good that you have. I've always tried to be a thankful person, but perhaps it was just a little bit easier for me to see how my cup runneth over... once I put ice in it. And I am so thankful for all that I have, and all I have been able to do.

***

I have met so many amazing people this year, and learned so much. Thank you to all of our wonderful family and friends for warming our life.. and for understanding that our Holiday greetings just turned into a New Years card.

Fit to Print

The book ... THE BOOK is now available. I am taking a break right now from building the Kindle version to mark this occasion on my own blog. We have received wonderful reviews so far, especially from Steve Silberman who has called Thinking Person's Guide to Autism the Book of the Year.
He says...

...my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person's Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

(I hope you read the rest of his article...Leo's cuteness is featured quite prominently!)

This book has been an honor to be a part of, and I can only hope that there's a story, a chapter, or even one line that helps another person navigate this life a little easier. There was nothing like this book when Jack was diagnosed more than seven years ago. I didn't know which information to trust. I didn't even know any adults with diagnosed autism. The website, the online relationships and all of the great content just amazes me.

And I have learned and grown over the last year and a half. My mind has been changed, while I have also become more confident in my own story.  I have a better understanding of community, and I am learning what advocacy looks like, or should look like. My heart has softened, just as my resolve has become a bit more steely. My heart holds so many more people and all of their words.

I have always said I am a different woman, a better woman than I would have been for knowing my son. I know that I would have been a writer or an editor of something somewhere. I probably would have donated my time and skills to help others because I was raised to think that is important. But I recognize that I am only a part of this great project because of my son. All of his struggles and triumphs, and the future that lies before him in this great big world filled with malice and grace. He led me to this opportunity, and I hope he is proud of the work we have done.

Buy your copy today!

My Autism Team

MyAutismTeam.com officially launched today. I'm so glad I've had the chance to meet some of the great people there. It's a good project that is already so helpful, and the more data we add, the better resource it will become for other families.

From their press release: 

MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children. 

The site is most beneficial for parents or caretakers of people with autism. Each member shares the "team" of providers and professionals who serve the individual with autism, and other members can see the team you have created. Looking ahead to families with children who are older than Jake can  help me figure out what providers we might need in the future.  I know we are looking for someone to create a special needs trust in the next year, and we will probably need to look into becoming conservators when Jake is a little older. I wish I had this kind of resource when Jake was three and we were searching for OTs PTs and everything else.

Please check out the site, and provide these good people feedback www.myautismteam.com and on Twitter @MyAutismTeam

A Bicycle Built for...Someone Else

The other day I was driving along, taking care only to watch my speed, and otherwise on autopilot. I was preoccupied making a list of all that I needed to do before we left for the holiday when I saw several bike riders turn onto the other side of the street. The last cyclists in line were a man and woman on a tandem bike, with a baby seat behind them.

I burst into tears.

It’s something I had forgotten; something that I used to want so badly. I wanted to ride on a tandem bike with my husband and our kid. I wanted to sail along the coast or through the grape vines of the wine country. We were going to be so fit and happy with our giggly baby cooing behind us. I had forgotten how many bikes I looked at online and those I looked at in stores while I walked around with my big pregnant belly.

Then we had Jake. Then I broke my leg. Then Jake wasn’t “meeting his milestones.” Then there was the first neurologist. Then the dog died. Then there was a job change (and another job change). Then there was OT and PT. And Jake still didn’t walk or talk, and he couldn’t sit up well on his own, (and how would he ever had ridden in that bicycle seat?) Then there was early intervention preschool and we bought a new couch. Another dog died, and there was more this therapy and that therapy, and speech therapy. We bought a mini-van. Then we had Lucy, and a few more dogs, and Jake got settled and happy in his new school, and Lucy started kindergarten.

And somewhere along the way, in the last eleven years, I forgot about the tandem bike. I forgot how important it had been and how badly I had wanted us to have “that life.” I forgot about the people I thought we would be, and the places those people would go. But watching that long bike whiz by tore something a little open in me and I had to pull over for a minute so I could get my bearings, and I could remember to be thankful.

***

I don’t have a tandem bike. I probably won’t ever have a tandem bike because it doesn’t match up with my life anymore, and really, it probably never did. I didn’t get to have “that life” – but what some people forget, as we wallow around in “what ifs”, is that no one had that life. No one did because it never existed, except in the mind of some lady in a bike shop staring at $3000 price tag.

The thing about being thankful, is that it requires you to be thankful. It’s not about begrudgingly acknowledging that “it’s not what I wanted, but it’s not so bad.” Being thankful is recognizing all of the goodness that is, (and maybe seeing the pitfalls that you dodged). Being thankful can be hard in the face of grief, or chronic pain, or financial struggle. It’s hard when your kid has a meltdown in the middle of the holiday dinner, or your spouse just can’t handle another minute with people and must retreat (leaving you to explain the absence). Being thankful might take a moment when you're just so tired, and every single thing seems so hard.

But there is good in every one of my days. I am so thankful for the life I have; for my smart, handsome husband who has turned out to be a really great dad, and for my beautiful children who surprise me every day. I love my family, and where I live, and the friends I’ve made. We have jobs, and interesting colleagues, and a house and cars that run and food in the fridge and the freezer. I have every basic need met and then some, and then some more, and I am so very thankful.

Autistics Speaking Day

Today is Autistics Speaking Day, at least for a couple more hours. If you are participating, please submit your post to the official site!


Thinking Person's Guide to Autism has been participating all day today with Liz Ditz curating every post she could find, and Carol Greenburg (-CG) busy tweeting  @thinkingautism :

I'm autistic, not sick, not broken, just neurologically outnumbered 

--Carol Greenburg

Inappropriate laughter. Worst description of autistic behavior ever.
If you use this term consider the possibility you just don't get the joke

--Carol Greenburg

I have always been more comfortable talking than listening but I am really trying to hear what he wants to communicate. 

Jack might not have a lot of words, but he does have a lot to say, 
-and he always gets the joke. 

Like Pebbles Through the Hourglass

We're sitting here on the walkway on our hill. I'm a little more relaxed up here as long as I am between Jake and the stairs which lead to the street, where he has just gotten off the bus. It's not a yellow short bus anymore, it's a very well-used white van with a sweet driver who may or may not understand anything I say. It doesn't matter to me as long as he continues to treat my boy with the respect and care he's shown each day. 

Jake's ride home from school is almost an hour, which seems like a long time, but it wouldn't be much shorter if I drove him myself. He's always been a good passenger, and it's not a bad ride through the eight or ten cities they travel. I imagine he leans his head against the window and looks at the rolling hills. Maybe he naps sometimes, but he's always loved road trips, and Descartes and I both like to drive, so perhaps it's just another way for us to know he's really our kid.

I keep asking him about Halloween. I know he practiced at school today, walking to the office in preparation of going door-to-door on Monday with a decorated bag, and someone holding his hand.  I know from the journal we pass between classroom and home that he carried a push-talk button that said "Trick-or-treat." I ask him if he held the button, or did his aide carry it for him. He smiles and squints his eyes.

He just keeps laughing when I ask him what he wants his costume to be.--the costume I need to come up with in just a few days. He's probably laughing because I keep asking him open-ended questions, like he is just going to answer me. As if today he will decide, or have the ability to say clearly, "I don't want to be Luke Skywalker, I want to be Vader." It's happened before, a whole sentence clear and direct. He saves his words I think; saves them for what he thinks is really important. For every gazillion words I spill out of my mouth, he has three or four words. I guess it's not so surprising that most people look forward to his. 

I let him linger in the sunlight that shimmers across his face, filtered by the leaves just enough to make me resist putting on sunblock, lest I ruin the moment.  He continues his survey of our path, gathering stones and leaves and dropping them in some order I don't understand. Jake is quiet and moves a little closer to me where I have sat down and begun pulling sour grass out by the roots. I love when oxalis fills the yard in fall, but since everyone else thinks it's a weed, part of me feels compelled to rip each flower out. Then I contemplate how often I balance what I want to do against what others think I should do, and wonder how it influences my parenting and my children. I overheard Lucy saying, "You shouldn't judge a book by its cover." the other day, so I know she's hearing me a little. 

The sun slides down faster than I expect it too, or else we've been outside longer than I had intended. Being with Jake in his moments is so peaceful. Aside from the crouched-down position he takes to do it, I can see how comforting it might be to sift through the pebbles and let them fall over the garden border. I love to plant bulbs and flowers, and have fond memories of my childhood at this time of year preparing the flower beds to receive more bulbs; anticipating what spring would bring. 

Time is different in a garden. Sometimes it feels like I've been pulling weeds for hours, but it can be pleasantly surprising to see how much I have accomplished when no one was watching over me, when I wasn't keeping score, when I couldn't see the hands on the clock from where I stood. I can't hurry the bulbs. I can't will more perfect breezy afternoons to sit with my son on the sidewalk. I can water all I want, but sometimes I forget what I've planted where on this hard-to-manage slope in our front yard. Some years the garden is awhirl with color, and filled with fruits and vegetables. And sometimes our yard is dry, barren, waiting for the day when Descartes and I are both available at the same time to fix the sprinkler system; because some jobs just cannot be done alone. 

I can see the peach fuzz on Jake's cheek when he turns towards the sun, his eyes closed as he soaks in those afternoon rays. I wonder what kind of man he will be when he's older, and what will be his career? his calling? Will he be an archaeologist? A forest ranger? A geophysicist, surveying cores of the earth? 
He dribbles dirt and pebbles in a little pile next to my hand, then hops up and runs the rest of the way to our front door; it's as if he knew I was jumping too far ahead. I take a quick breath and run after him.. let's figure out Monday. The rest of the days will still be there when it's time. 

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

Take a Deep Breath

It's been a rough back to school for Jake. Going from playing outside all day with very few demands back in to class is hard on most kids, but there were also staff changes in his classroom in September, and lots of changes with aides at home. Not to mention a growth spurt and a migraine thrown in for a few days. Sadly, he has begun hitting himself on the leg repeatedly, enough to cause a little bruising. It kills me that we can't figure out some ways to soothe him out of the stim, but he's doing it when he is seemingly happy as well, so we've added it to the wonder and mystery that is our son. 

It's possible there has just been too much going on. Jake had his trienniel IEP, along with all of the psychological and developmental testing that goes along with measuring the minutia of a child with so many services. His teachers came to the house for a visit, which was lovely actually, something I wish every school-aged child could have at least once. After the home visit his teachers now have a frame of reference for all of the things we talk about, which I think is helpful since Jake is basically non-verbal. And the actual IEP went very well because those educators, staff directors, and the psychologist -- the OT, and the adaptive PE guy, and the speech pathologist, and all of the support staff, they all really care about my kid. I think they even like him. 

Then his Regional Center social worker came for her annual appointment, where we went over his IPP. That's his Person-centered individual program planning. Sort of a life-map plan for Jake, so that he can continue to get the services he needs from the state. This meeting also determines the number of respite hours we receive from the county. There are a lot of forms. This year there were some tears. The goals didn't change much from last year, and while I know Jake has grown and changed, the paperwork just won't ever tell that story very well. 

There was also a meeting with his IHSS social worker. In Home Support Services are monies that "help pay for services provided to you so that you can remain safely in your own home." His disabilities are measured from top to bottom, and his entire day is accounted for. We speak of his needs in quarter hour increments, and calculate, how much time does toileting take? cutting up his food? And does he still need help getting dressed? Can he get into the car by himself? Can he brush his own teeth? 

And lastly a visit with the doctor at CCS, California Children's Services, which addresses the cerebral palsy part of my child, as if we can just divy up his mind like that. We talk about wheelchairs and shoe inserts and medications, and how much he's grown. We talk about puberty. Puberty! The meeting takes place in the same room we've been going to for nine years, or is it ten? So we are half way through the services there; CCS stops providing services at age 22. Half-way through his childhood? already?


We are very blessed with kind social workers who really feel like advocates for our family, and a school district that truly honors IDEA, and a school that loves my child and wants to help him to become a productive adult. We have all, or at least most of the services in place that we need, and I can manage to paperwork and the running around that is required of each service because I can work from home.


But every time we have these meetings in a row, and they are always in a row, right around Jake's birthday, I am exhausted. Of course each meeting requires preparation on my part, but it's not that part that is so tiring. It's talking, for hours on end, about all of my son's deficits. It drains me. completely.


and when I'm that drained I'm sure Jake gets frustrated because I'm probably not "hearing" Jake as well as I normally do; much of his communication is subtle. At least twice during these meetings I had to speak about him, in front of him, which makes me feel awful, and it can't be that great for him. I normally speak without him nearby, or I remember to tell him who is coming and the things I will need to share with that person about his abilities, but I forget sometimes, and no matter how carefully I word things he might hear, it can't be that great to hear a list of all of the things you aren't good at. I'm certain that would make me more than a little agitated.


But we are done for awhile, so I can only hope that as I catch my breath and pull everything back together, Jake will do the same. 

Stretch

I'm responsible, capable and able to make good decisions in a crisis, but I am not a very 'calm' person by nature, so yoga, with it's years of practice to become a master, and it's zen-like relaxation... the silence and the named poses, none of it seems like it would be a good fit for me. But I've tried.

The first time I went to yoga was with my dear friend BQ. It was "relaxation yoga" at the beautiful YMCA near her house. We took our precious baby girls who were barely toddling, and probably both still nursing, placed them in the uber-awesome childcare with seasoned staff and happy decorations and ironically ran to make the class. There were mats to get and blocks to place and blankets to fold; we filled our water bottles. Class began by lying down on the mat. Of course, "lying down" is not an exercise to me, so I was immediately frustrated because if I was going to take any time for myself then DAMMIT it was going to count and I was going to be in shape and healthy for my children, and as I laid there, cursing myself for thinking that anything with the word "relaxation" in the title was going to be my speed, the pager went off from the nursery, and I was called back to pick up my crybaby. As nice as the staff is, they did not appreciate my daughter screaming her head off.

Then I went to Bikram yoga with Pollyanna.. where they crank up the heat and steam until you want to throw up as you pull your right foot up and over, opening up the pelvis.... I lasted the entire class and was congratulated for doing so. Then I felt dumb because I realize I could have left. It had not occurred to me that "quitting" was an option. Because dammit if I am going to take time for myself then it is going to matter and I am going to DO THIS. I went back one more time before I randomly hit my head on the tailgate of my not-so-mini-van and gave myself a bonk that rendered me unable to find the right words to say, and an ache in my head that took a week to get rid of.

Next I tried some yoga/pilates torture with Squid. We went on Tuesdays for a month, for a 90 minute class. It was very hard, and the instructor of the first class made breathing sounds that sounded way too intimate for me to do anything but keep from giggling. The other two sessions I attended went well, but when I went to sign up for more I just could not justify spending $20 a class, when twenty bucks can buy so many other things.

But this morning I woke up and I wanted to go to yoga. I wanted to sit in a room with other bendy humans on a large flip-flop and contort my body, pull at my toes, and try to reach the center of my back... on purpose. I did not grow up in a family that encouraged regular exercise or sports... no discouragement... just no real nudge for athletic achievement, which is funny, because I have great hand eye coordination and pretty good spatial awareness. I do however find that tasks which do not accomplish more than one thing at a time sort of gnaw at me. Treadmill, blech, but a hike? yes. a walk about? yes. strolling downtown to hear music in the square? Count me in.

When Descartes and I are by ourselves without the kids, we lead a much less sedentary life; we walk places, go on hikes, park farther away, take public transportation.  I think we eat better too.

I'm not sure what it is about both of our kids together, or is it Jake's muscle weakness.. and our need to use the wheelchair?  It all makes exercise seem impossible. And when they are at school I feel like I am catching up on work and paperwork and shopping. When would I take a full hour and have it be all about me? Well, apparently at 8:30 am after bus and school drop-off, at least for today, it worked. And maybe it will work on another day this week, or the next. Today I went to yoga, for me. Not to keep someone else company, or because there was a coupon. I went because my body wanted to move that way today.

I'm hoping there are some busier days for our bodies in the future. Jake is inside that trailer in the picture there. He's grown out of his last bike trailer, and as Lucy is old enough now to learn to ride a bike, she's been asking more and more often to go on bike rides as a family. It's a from a company called WIKE, and is both a bike trailer and a jog stroller. Jake doesn't have the skills to ride a bicycle yet, and he gets tired after about 1/2 mile of trail walking. This trailer will get us through three or four years of Jake growing, and hopefully provide our family with some great outdoor time. At the very least Jack had a great time in it being hauled across the soccer field last Saturday.

I think parents with special needs kids forget to take care of themselves, I know I have. Moms generally have a habit of putting themselves at the bottom of the list. But Jake needs a lot of help physically, and if I don't "increase my core strength" and build up a little bit of muscle, it's going to become increasingly difficult to care for him without significant help.

Today, I went to yoga.

I Yell. I YELL!

I yell. Not all the time, and not at every body, but I yell, I raise my voice. I know I do. In fact I probably want to yell a lot more often, but somehow I have figured out that generally it's not appropriate. People don't think very highly of you if you yell a lot. I know I don't think highly of people who yell a lot.

I don't yell at my husband, or at least it's very rare these days. When we were first married he let me know that it was possible to have an argument without yelling. In fact, he thought it was possible to have a discussion and not an argument, something that I'm still working on, I suppose.  I grew up with a family that tends to come in fast and hot, solve it and move on. Descartes said, "We're going to be together a long time, and I just won't talk with you if you yell." So I don't yell at him. I might holler across the kitchen, or from the back yard, "Do you want cheese on your burger?" No. "Do you want another beer?" Yes. I want to raise my voice sometimes when I am very passionate about something, but I try to be respectful of him, and our marriage, and I want our children to see that two people can disagree, come to a conclusion, and stay married, all while being kind to each other.

And I don't yell at Jake, because, well that's not cool to yell at a special needs kid right? No one thinks that's okay. And I'm not sure he always processes everything I say when I'm just talking, so what would be the point of yelling at him? Asking him to hurry, or get off of something, or into something, or around something is often futile at best, so it just never occurs to me that I should yell. I've been frustrated, many, many, many times, and I know I've raised my voice in fear; yelling "NOOOOO!" as he darts away from me in a parking lot, or scrambles towards an open door...heading to a swimming pool. I've been tense before, used a stern voice, and cried and sobbed with him, but I don't think I've really yelled at him.

I do yell in the car sometimes when I'm alone. I might yell when there are dangerous drivers, or radio news that reports of laws being passed that are discriminatory, or politicians who-- well, almost any politician can raise my ire a bit. I've yelled at my computer screen at other bloggers, but mostly these incidents are far between, I stew rather than scream.

But, I've yelled at my daughter.

I get frustrated and I yell.  I get exasperated when she does not do what she is supposed to do, like get her shoes on, or go to the bathroom before we leave the house, when I ask her to. Then the time rolls around to depart, and she, with several reminders, hasn't done whatever simple, but time consuming task it is. The consequence is that the whole family is then rushed, and possibly late. If we miss Jake's bus, that's a 40 minute drive to his school, one-way. This new school year has presented the scenario where there's about 12 minutes between the time Jake leaves for school and the time Lucy needs to be in class. Luckily the school is 4 minutes away, but we need to park and walk and the later we are the farther away we need to park...

It feels like we do not have a lot of room for anything else to be any more difficult than it naturally is. I need everyone, we need everyone, to do what they are supposed to do, when they are supposed to do it, and do it to the best of their ability, every single time. Which means that Jake needs help with every single thing, every single morning, but Descartes and Lucy and I should be able to get ourselves together. I make sure she has all of the components of her outfit. I 'do' her hair. I make her breakfast, and pack her lunch, and get her backpack ready to go because, I'm not an idiot, I know she's only five.

But when she doesn't do those other simple things? I yell. Sometimes loudly. "NOW! GET YOUR SHOES ON RIGHT NOW!" and of course it doesn't help anything. At all. It probably even makes things take longer. Then we get in the car and my heart is racing and Jake who hates being rushed, just wants to get the hell to school and away from us, and the day has begun with anger instead of calm, and we can't ever go back and make it different. Another whole day of our life has started with Jake agitated, me feeling like a crappy mom, and Lucy feeling like...like what? What emotion is she taking to school and sitting with for the day? And what have we gained?

What I am wondering, is this: am I taking every single thing out on her when I am yelling about her tiny little white tennis shoes, because I can't yell at anyone else? Is it just my nature? Does she perhaps push me farther than every other thing on the planet? Am I destined to yell at my daughter, because that's a style of "discussion" I'm used to?  Is it that we are so alike that she knows all of my buttons and presses them systematically like she is testing a shuttle before launch? And what am I teaching her by yelling? What will we have accomplished at the end of a verbal spar?

I'm more aware of it lately. It feels like it's been happening more often, though it probably hasn't. It may be she's exerting independence in more places, which is age appropriate, but I don't want to have these interactions every day. I'm not calling her names, or demeaning her, I'm only ever repeating the task that was supposed to already have been done, but it makes me feel awful, even when I know it's not that dramatic or bad. And I'm sure it makes her feel awful too... recently I've found myself apologizing to her hours later, and it almost always turns into a good, productive conversation with talk about how to do things better next time. But right now, it renders me unable to fall asleep at night, and makes me want to wake her up after she's been in bed, just to have some more positive moments in the day.

Do you yell at your children? At just one of your kids? Is it a phase?

 ****

note: I wrote this post several weeks ago, just as school was starting. Things have settled down into a better routine in the morning for all of us, and Jake is out of the 'episode' he was in. We have had a couple weeks of nearly yell-free mornings, but I think I need to continue to think about how I interact with Lucy because it feels like she could be an easy target for my frustrations.




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

Ya' Been Busy?

from my mom, after almost a week without hearing from me, and no blog posts to read:

hi,

I assume I still have a daughter??? have ya been busy?

Love,

Momma

my response:

Work presentation, finally got my hair cut/highlighted for first time since May, editing TPGA manuscript.  

Lucy lost her backpack (with awesome lunchbox, all of the cool boxes that actually fit inside, a new pleather jacket that she has worn once), several school functions. 

Triennial IEP for Jake, which is a very big deal with a lot of talk about deficits..reestablishes his being able to stay at Wunderskool. Then annual meeting with Regional Center social worker to determine eligibility of respite hours etc.; more talk about deficits.

Sister and boys in town since Thursday.

Jake very agitated for the past week or so, hitting himself, hard, on thigh and face, and not sleeping. Lucy lost another tooth. (I told her the tooth fairy can't come until Monday night.)

Seems like everyone has reflux . Screen door (in the back) has been removed because it broke beyond repair.

Every after school child-care/aide we have, has changed their hours. And now, backed up plumbing-snaked it four times.

That is the last SIX days. I wonder what Monday will hold (aside from calling the plumber at 8am)?

******* 

of course we did do fun things too, which I failed to mention in my email.

in those same six days:

I visited my son's classroom and got to introduce a new aide to how we interact with Jake.

I cleaned up the dining room table (my office) by putting things away or throwing them away rather than stashing the stuff somewhere else.

We went as a family to my daughter's soccer team. (Yes, I am the 'team mom', but I asked someone else to bring the snacks this week! I asked for help!)

We went to an evening fundraiser at Lucy's school and ate cotton candy and looked at cool cars.

I put some finishing touches on an awesome project I'm working on.

We had a prodcutive editorial meeting for TPGA, and we are well on our way to getting the book out.

My husband, sister, and I went out with friends to a new Tepanyaki resturant and practically had our eyebrows singed off at the Benihana-style grill table.

We home-brewed beer on Saturday night so that it will be ready for my sister's birthday.

We took all of our umpteen kids downtown to listen to music and play for free on inflatable jump houses.

and I took a nap.