Monday, December 31, 2012

Inexplicable Quotes

No, I have no idea where this stuff comes from or what to make of it all, and this represents just a small sampling. Just laugh. Happy New Year. 

"Mama, have you ever heard of a perfume called Vanilla Death?"

"We have to propel all the insects in the animal species away from our house."

"Mama, what is the difference between you and Usama Bin Laden?"

"Right now I want to talk to you about propelling things." 


...And one from my girl, Peaches:

"Watch me dance! Gum Gum style!"


Resolute

I forget obvious things sometimes.

I think we all do.

I forget that wherever you go, there you are. I forget that my magical thinking does not, in fact, determine the spinning of the planets. I forget that you don't really "know" the life or experience of someone else just because you read their FB page -- or their blog.

And I sometimes worry other people forget too.

I guess what I am trying to say is that I use social networking in the way that works for me -- I put the worst stuff here on my blog without our names on it and the best stuff on Facebook, which gets back to my mother even though she doesn't even own a computer -- and I feel like it's all honest, it's all sincere and true, but it's all just individual slivers of complex life. Now, that last long sentence might seem obvious, but since I forget obvious things, and I thought it might be worth sharing.

We can't compare. Our experiences are our own, and they aren't simple, and there is almost always a good and a bad and many, many shades in between, and myriad ways to see it all.

Here are some more obvious things I consider worth sharing, and remembering:
  • Autism is not just one thing. It is not good or bad, it is just part of a person, and part of my son, my beautiful son, Rooster. 
  • Guilt and envy are completely wasted emotions that bring no rewards and look very ugly in the mirror, while love and joy are jackpots that radiate beautifully from whoever embraces them. 
  • Life is short, so the best way to savor it is to be present exactly where you are, and look for the good. 
  • If you stumble, struggle, suffer, or vent, you are not a failure, you are a real person; just try to get back up as soon as you can, and do what you can to keep your sense of humor.
  • Despite the shortness of the list, these can all be hard things to remember, so it's good to write them down and re-read them when we need them. 

Happy New Year from Casa De Rooster and Peaches

Friday, December 28, 2012

Informal Education

During his vacation, my son has:

  • made his own "movies" using ToonTastic (incredible app!)
  • read more than one dozen books (all the while asking me about new words and trying them out in his own sentences)
  • helped decorate for Hannukah and Christmas
  • played more with his sister than I ever remember, taking turns and sharing and using imagination
  • gone to the park and made new friends
  • learned new games
  • practiced typing on my laptop
  • done chores and helped in the kitchen
  • visited tide pools
  • practiced his math with me with less resistance than usual
  • spent quality time with relatives
  • slept soundly
I wish his school could reach him the way this vacation seems to. 

I am an educator, so I never mean to sound disrespectful of schools, teachers, learning or learners. However, what I witness as a parent is that the various societal pressures have been misplaced upon our kids, particularly ones, like my boy, who have autism, and I admit that there I days I fear my son's school does him more harm than good.

I am grateful that we have another week to learn and grow and rest and love at home together.

Sunday, December 23, 2012

This Little Light of Mine...

You can say what you want about Facebook, social media, and the rest, but if you want to know the best holiday present I could have asked for this Hanukkah and Christmas season, it is this:

https://www.facebook.com/AutismShines

Check it out. 

Autism Shines is a Facebook page full of love. I liked, joined, dove in, and every day I am greeted with friends I have not met, families who are different like ours is different, a wealth of future peeps for my little (but ever growing) Rooster.

Joy to the world...
Autism Shines.


Thursday, December 20, 2012

Never Having To Say You're Sorry

Recently my daughter was invited to a birthday party where it felt comfortable to bring my son, too, even though he was older than all the other kids. Sometimes he plays best with younger kids, but on this day he found himself most interested in a mom. He stuck to her like glue. I began to notice that she might have enough on her hands with her own two kids, and I tried to get him to play with me instead, but it was a tough sell. He continued to interrupt her quite a bit and I was running out of ideas and feeling awkward, so I blurted out to the mom, "I can get him to take a walk with me, I am sorry you haven't been able to finish your other conversation."

She used exactly the perfect inflection and mannerism when she said, "Hey, look. You never have to apologize for your son. Don't worry about it." It was exactly right and just what I needed.

You know why she is such an awesome person? Well, probably because she was born that way, to some degree, but also, I think, because she already knew someone with autism. She knows someone, and so she gets it. Knowing wonderful families with kids on the spectrum opens people up, opens their hearts, and it reminds me that my family needs to stop hiding as much as we do. When I am "out there" with our family, our experiences, our truths, I make it easier for other people with autism.

That's all.

Tuesday, December 18, 2012

Hushed

It's harder to write lately. It's harder to write because I have too much to say.

Ideas roll like snowballs, growing quickly, no top or bottom or start or end, but I want to spend time on each snowflake, and it's impossible. It's all too much.

So I consider saying nothing.

But I noticed more visitors coming here, and I thought that even when we have nothing much to say, we come together in communities like this to feel less alone, to say: I am here. We are connected. I also do not know what to say, so we can sit quietly together. We can contemplate the snowflakes for now. We can find our words whenever it is the right time.

I believe that you, of all people, will understand.

Sunday, December 16, 2012

Why?

In the wake of the tragic events in CT, I have found it hard to process and articulate thoughts this weekend, beyond simply expressing my tremendous heartbreak and respect for the community of Sandy Hook.

I am glad that others are able to find more words, though.

Jill, a fellow blogger, wrote something on her blog that she said others could share, so I am. Thanks, Jill. Her original post is here: http://yeahgoodtimes.blogspot.com/2012/12/the-connecticut-tragedy-and-autism.html

Below is what she said.

****

Dear Community:

There has been much discussion online and in the news about the connection between the Connecticut school shooting and the fact that the shooter may have been diagnosed with autism. As our families and our community discusses this issue and tries to find a reason for this heartbreaking tragedy, I feel that it is very important to remember the following: There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind.

Autism is not a mental illness; it is a developmental disability. Many autistic people may have emotional regulation problems, which are impulsive expressions of frustration and anger, that are immediate and disorganized. They may lash out with threatening statements or behaviors, but these behaviors are impulsive reactions, they are not deliberate or organized plans. Once the situation has been diffused, the behaviors will stop. What happened in Connecticut required methodical planning of a deliberate and tremendously violent act; this is not typical behavior of an autistic person.

Right now we are all struggling to find a reason why this kind of atrocity would happen, and we can speculate about the mental state of the shooter; about gun control laws; about the current state of our country’s mental health system, or about whatever else that might help us make some sense out of this. Please know, and please tell your children, that even if the shooter was autistic, autism is not the explanation for this tragedy.

If anybody has any questions about autism, please do not hesitate to contact me.

Thank you very much for your time,

Jill

Thursday, December 13, 2012

Holiday Music

In kindergarten, my son could barely manage to be on the stage for the holiday show.

In first grade, he was there, hidden in the back row, not very present. I doubt he did any singing.

In second grade, an aide helped him participate a little, mostly he spent his time on stage pointing at me and trying to have a conversation with me even though he was on the farthest bleacher and I in row twenty.

Yesterday, I left work early to make the trek across the chaotic city, not sure what to expect. We had practiced and practiced and practiced, but I knew that:

processing issues
sensory issues
attention issues
impulse control challenges
and, of course, autism

would make the actual show much harder than any rehearsal.

I thought I was prepared for anything.

Not really, though.

I was not prepared for how grown my son looked. I was not prepared for him to beam at me, but not need my help at all. I was not prepared to see him dance -- WHILE SINGING -- and WITH A GIRL. I was not expecting to cry, not anticipating happy tears.

I have loved my son since the day I knew I carried him, and I don't love him more or less based on his "accomplishments," but when he sang that Hanukkah song? Well, I was just bursting with love. So much that I have to borrow the words my grandma used to say to me: Rooster, "I'm so proud of you, I could bust."

Wednesday, November 28, 2012

Be-Ing Roostery : Absence Makes the Heart Grow

Almost never is it just the Rooster and me, home alone.
In fact, I have been struggling to remember when we ever had a night like this, and it's possible we never did. 

Peaches had the rare weekday play date though, far on the other side of town, and when Rooster and I settled in together, we took out his homework to discover another extremely rare occurrence: Because he had to take a big, long test today, his teachers gave only one assignment: Read for twenty minutes. I didn't even tell him that his homework was reading, because to him "homework" is automatically a negative association, and I want him to continue to revel in the joy of his reading. Honestly, to my boy, reading for only twenty minutes would be a punishment.

So we have been hanging out, eating dinner, resting, and reading, for about three hours now.

We didn't do anything fancy. That is just what made it ideal -- the things we didn't do. We didn't yell or get wild, we didn't have time outs, we didn't struggle through pages of math, we didn't have any standoffs about mistakes on assignments, we didn't rush, we didn't have to do deep breathing exercises to keep our sanity.

I liked how we read. I liked how we sat on the sofa. I liked how we ate. It sounds ridiculous, but it was a wonderful evening. I liked all the things that lacked drama. I liked the calm.

The absence of homework from school, and the absence of working at home to manage two kids who can sometimes bring out the wild in each other, made for a night of restorative be-ing.

I highly recommend you take some things off your plate as soon as possible and have a night like ours. It does a soul good.

Tuesday, November 13, 2012

Tomorrow

You don't get days much more beautiful than the one we had today.

Not hot or cold or windy or wet or anything other than bright, comfortable, glorious, inviting weather.

I drove home with an ache in my belly past kids on bikes, families on walks, parents pushing strollers, a skateboarder, and many smiling faces.

Once I arrived home, I sat in my car an extra minute or two, not sure how to go inside and seize the day.

It's hard when you have a child who has learning disabilities, communication challenges, and poor social skills, to know the right way to begin the evening.

As much as I'd like to join the beauty outside my house, inside, there is work to be done. Homework means reteaching, much needed practices, playing catch-up, addressing areas of great challenge for my son, and corralling my precocious and undisciplined daughter.  Family time means balancing difficult dynamics and endless quarreling. Housework means some idiosyncratic chores that, I'll just say, are probably not occupying most typical families on the block. Dinner and packing lunches means constant care with kids with severe allergies.

When I get home from work, hours of effort stretch out before me, and the hardest work of all is figuring out how to experience any leisure or play. Sometimes the effort feels debilitating, if that makes any sense.

And so I'm blogging now as the sun disappears, taking away the perfection outside our window, closing yet another opportunity when I am entirely unsure whether or not I blew it.

Probably I did. Probably I blew it.

Hopefully the sun will come up again tomorrow and give me another chance.

Friday, November 9, 2012

If You Only Knew


The other day, a colleague told me, "You worry too much!"

I laughed, because I thought, "If you only knew!"

The other day my sitter gave my kids fat circles of carrots for a snack, and when I walked in and saw them I had the sense of needing to swoop in, rescue them, conquer those evil carrots, protect my babies like they were about to fall off cliffs, and I recognized my overreaction with both a laugh and some concern. (Then, of course, I diced the carrots finely and let my sitter know to always do the same.)

Yesterday I had a very minor traffic accident. No one was hurt, the rate of speed was very slow, and you would have to carefully scrutinize my license plate to even find a clue anything had happened. Today, I drove like I am 200 years old, and every single shadow on the freeway caused me to slow down, check my mirrors, sit up straighter. I laughed at my over-cautiousness, but stayed in the right lane all day.

Partly, I was born this way.

Partly, I have some autism PTSD. I worry about everything because I am worried that I didn't worry about some of the things that I should have worried about regarding my son and autism.  I worry because when I worry sometimes - voila - some of the things I worried about don't happen, maybe because I have learned to worry about them, so I want to be worry vigilant. I worry because there is so much press about all the things you have to worry about if your child has autism. I worry because it's easier to worry about carrots and cars than a child's autism -- his social isolation, multiple learning disabilities, health concerns, expensive therapies, and future prospects -- by a long shot. Worry has become a habit, a mantra, and a way of life, and I worry about the worry. That's probably what worries me most.

Saturday, October 20, 2012

Since You Wondered...

I know you've wondered how our adventure turned out with the Best Day Foundation, right? Well, it lived up to its name. I'll share it with you in the boy's own words.

The Rooster dictated this to me when we got home from the beach:

"Today I went to go surfing and boogie boarding with the Best Day Foundation. I rode a big wave on my boogie board! I got salt water in my nose and in my eyes and I jumped a few times over the waves. It was scary. It felt a little weird to my head and I couldn’t feel my hands. I felt excited. I was light-headed with happiness. Then I went on a surfboard. I rode a big wave but I didn’t get a chance to stand up all the way. Guess what? I told my surfing buddy that the waves smelled like Davey Jones’ locker and it also smelled ancient sneakers! He laughed. At the end of the day, I got a medal. I felt very happy. When I grow up I want to be a surfer."

Thank you, thank you, thank you, friends from the Best Day. We hope to see you again next year. 







Saturday, October 13, 2012

Best Day Ever? Fingers Crossed

Tomorrow my boy has the opportunity to surf with the Best Day Ever Foundation.

I signed him up, many months ago.

I want him to do this.

I am scared.

I don't want him to know I'm scared, because I want to instill in my boy confidence, a willingness to take risks, a sense of adventure, a passion for life. I don't want autism to prevent any of that. And I don't want to prevent any of that with my own insecurities. I barely can swim! I never tried surfing. I want him to try new things, and I think he will be with qualified volunteers. Reading the waiver, though? Gives me shivers.

Will you send good thoughts?

Please, please?




Thursday, October 11, 2012

There in Spirit

Tonight I am supposed to be at a gathering of moms of kids with autism. I'd been looking forward to it since I read about it online and I was so glad it would be held in my neck of the woods. So why am I not there? For the same reason I want to be there: I have two kids and one has autism and some day it wears me out.

Not so different, my husband asked me why I haven't yet gone back to the doctor about my fatigue. Why? Well, I'm too tired to call the doctor let alone go to the doctor to talk about how tired I am again. Still. Whatever.

These are not complaints. There are real problems in the world. I am fortunate. I recognize my blessings.

I'm just saying this: Sometimes you can't "tackle" everything so you can solve the world. Sometimes you just need to rest to have the oomph to face another day head-on and with appreciation for what you've got.

I'm at the support group in spirit. I'll call the doctor soon.

Good night.  

Wednesday, October 10, 2012

Cheese

Today was picture day for the Rooster.

Now, my son is beautiful to me, so I have no idea what he objectively looks like - I just adore that child.

However, LAUSD notoriously finds mug shot photographers to take yearbook photos, forcing you to prepay before they set up their 1970s cheese parades of backgrounds and flash emergency lights into the eyes of your offspring, and we never get a shot that is anything less than terrifying. I have long since stopped buying these travesties, and I guess my boy has picked up on our less than enthusiasm for his annual forced grins.

He came to me last night and said, "Mommy, I have a bad smile, what am I going to do???"

Well, we assured him, of course, that his smile is gorgeous whenever he smiles with us, and if he wanted to really like his photo this year, he should just enjoy having his picture taken and think of something that makes him really happy.

At bed time, my husband asked, "How did picture day go, son?"

"Good," he said. "I just thought about Brenda* and smiled and felt happy and that was it."

*Brenda (not her real name) is a girl in Rooster's class. She is new this year, NT, and nervous when she arrived. My son enthusiastically welcomed her and gave her a tour of the school.

Her parents like us.

Did you hear that?

I might need to say it again, as it just trips joyfully off the keyboard. A first!!!!

Her. Parents. Like. Us. We have had a play date. So far, they STILL like us.

How is all of that for self awareness, social engagement, empathy, and progress?

Yeah, I have a pretty good smile going right now too.

Monday, October 8, 2012

Day in the Life

The other day we were riding slowly through traffic and I noticed more quiet than usual in the back seat. I looked back and the Rooster was reading a book -- not a surprise, but continually a joy and a cause for much gratitude. Peaches was writing. Furiously. I asked if I could see.

It took me a moment. I had to interpret her best guess spelling. But pretty quickly the boxes gave it away.

My six-year-old was designing a behavior modification system.

For her big brother.

My kids. This is how we roll.

Friday, September 21, 2012

aaahhhem...

if i whisper maybe i won't disturb the cosmos
i don't want to disturb the cosmos and cause a jinx
but i had a pretty mundane day

and a pretty mundane day
is pretty much
all i've been desperate to have

shhhhh

thank goodness it's time to go to sleep
and it's unlikely i will mess up this
lovely,
appreciated,
simple,
perfect,
mundane
day

Thursday, September 20, 2012

Dear Diary

I needed an empty shoe box.

Instead I found an old journal shoved in the back of the closet.

Here is what I took away from that experience:

I never *really* change. Nine years ago I was not so different than I am now. This is both good and bad news, but mostly it surprises me some. I am always thinking about how much parenthood feels like it changed me. I guess it's like that saying... it didn't change me, it just revealed more of who I am. Again, that is both good and bad.

I have always wanted what I have  now. For a while now I've been realizing and considering the significance of this truth -- that I have exactly what I asked for -- but to see it in my own handwriting really illustrates that reality in a more effective way for activating my sense of gratitude.

Journals are so last decade! I am glad I have a blog that I won't lose in the back of my closet. 

Monday, September 17, 2012

So Much Portends From a Little Bicycle

I want to write a post about my son, who has autism, learning to ride a bike -- slowly, in careful stages, with support from research on teaching bike riding to kids like him from bloggy friends, and with the tireless help of my husband.

And somehow I want it also to be about my daughter, the princessy one, who watched this lengthy process, and cheered her heart out when her brother rode down the street for the first time, even though she usually prefers to be the center of attention.

I would, of course, need to fold in how, after all that observation, my girl, two years younger, hopped on her bike the day after and then rode down the street successfully the first time out of the gate.

From there I would segue three years of potty training my son, as my daughter watched, then potty trained herself.

I'd tell you how epically much my children fight, and how hard -- um, excruciating -- that has been, and how in spite of all that seems so unbearable related to that, they actually learn a tremendous amount from one another, and how the depths of their intricate bonds will likely continue to reveal themselves in beautiful ways for years if I will just learn to relax and quit freaking out when they argue.

But all this stuff is quite emotionally draining. I am euphoric, and I am nearly incoherent. So remind me to tell you about this stuff sometime when I'm not so spent. I might have a few things to say.

Saturday, September 15, 2012

Anyone There?

I post 99.98% for myself, and always have.

But once in while a girl wouldn't mind a comment or two, you know?

If anyone is still out there and wanted to say hello... I wouldn't mind a hi once in a while, I'm just sayin.


Back To Business

We recently survived Back to School Night.

It's like tax day, dentist appointment, and jury duty rolled into a knot in my stomach, and it was the second epically long day in the week. A Tuesday.

This school is no fan of my family, as they make it abundantly clear, and after the poem incident this summer, I can't find much love in my heart for the school either.

So I did what I had to do.

I met one of my favorite girlfriends 30 minutes beforehand for a cocktail.

And I don't drink.

So it took my edge off.

See, ordinarily, since blogging = ceremonial venting for me, I would tell you about leaving before 7 a.m., returning at 8 p.m., and in between dealing with grumps and obstacles. But I got to hang out with an amazing friend and sip a girly drink and tell her my woes, so this might be the first year of Back to School Nights in my son's academic career that was not a thorough disappointment.


Overheard

Rooster is eight, Peaches six. I am approximately the age of a T. Rex.

Rooster: Are demons naked?
Me: Um, demons? Demons are not real so...um...
Rooster: But are they NAKED?


Peaches: Daddy, will you please [mumble mumble mumble]?
My husband: No, Peach, and I'll tell you again, that is weird. It's an unexpected question. I have no idea what to say to you.


Rooster: I'm just wondering, how long does it take to microwave a pizza? Just curious.


Me: Do you think we should go check out that gym membership? Or go for a a walk? Or eat ice cream for dinner?

Hope you are having a lovely Saturday.

Wednesday, September 12, 2012

A Candle, A Memory

In June, I lost a friend.

I say friend, though he might have called me a "colleague." In fact, many nights I'd come home and ask my husband, "How do you think I can get C to hang out with us outside work?" I sort of mildly stalked him online a bit via LinkedIn and Google to learn more about his work and ideas. And, invariably, I would end up saying to J, "You will love him. He's a genius!"

C had this way of making everyone who ever worked with him want to be his friend. I knew this from the first day I met him, but it was irrefutable once he died. Everyone had a story about the way C could make people feel special, cared about, and heard, even though he somehow also managed to keep us all at a little bit of a distance. I am not sure any of us "colleagues" who revered C got to be the kind of friends who he'd hang out with outside of work.

I do know that we were crushed when he killed himself. Person after person spoke the day we gathered to remember him and used the word "light" to describe C. When I called my husband, who had never met C, he'd heard enough about him that he immediately gasped and said, "Not C! Why?"

Let me be 100 percent clear: I do not know why C chose to die. I do, though, I fear that I suspect it.

I fear it when my son is teased for his autistic traits. I fear it when my daughter worries about her appearance. I fear it when kids I teach roll their eyes at a classmate for anything that makes them different.

C didn't have autism. He had such an incredibly handsome face that, when he smiled, as he almost always did, I found myself thinking that he was the first man I'd describe as "radiant." And, smart? Don't get me started. C didn't seem, in any overt way, "different." What terrifies me is that I think he felt different. On the inside. I am scared that every time our mutual work involved learning about oppression, discrimination, and genocide, he felt a deep resonance and fear of his own differences.

I feel guilty telling C's story, or my take on it, even now that he is gone, because one instinct tells me it is none of my business. Yet another tells me it should have been, and should still be, my business to use the powerful tool of storytelling to reach out to C, to you, to anyone and everyone, and say: We are ALL different, and we are ALL the same. We are unique, and we are people. We should not live with a fear of differences, only of fear.

I do not know if C suffered any abuse in his life; it's hard to imagine it because I knew him as a big, strong, successful, sought-out, professional, but whether his personal life or background told a very different story, or whether he perceived himself or his life very differently, I am not privy to know.

I do not know why C is gone. It makes me sad and angry. And sad. Did I mention angry? There is not much I can do with my sadness or my anger except blog, and so that is why I am telling you.

When we tease, when we ridicule, when we roll our eyes, and when we denigrate, we risk hurting the human victims of our abuse, and sending a message to every onlooker that they could be next. When we tease, ridicule, denigrate, we risk destroying the genius that our world needs, and we risk extinguishing radiant light. We risk leaving ourselves very dark and very sad.

I want better for all our children. 


THIS!

I love this so much, I just hope you will read it, and share it with a teacher:

http://www.thinkinclusive.us/10-promises-special-educator-parents/

Tuesday, September 4, 2012

Write or Cry

There is the me I imagine myself to be
a dream, a wish, a vision
And there is the me in practice,
sometimes petty, often weary.
I take them both to the pharmacy
And let them duke it out.
I take them both to the pharmacy
Knowing no good has ever come
From going to the pharmacy,
Where the medicines are efficacious
But the processes
paperwork
policies
protocols 
politics
and always, always, always down computers
will make you seriously ill.
One me passes the time calling up stirring and inspirational heroes,
Their speeches and their wisdom,
How to translate the seeds they've planted in my mind,
To grow my own version of a better tomorrow.
The other resents the simple fact of being there,
The need, the expense, the people, the same, same, same, same, same, same, same.
These conjoined selves -- inescapable, untenable, intolerable
Follow me everywhere.
But drive me most mad at the pharmacy.

Sunday, September 2, 2012

italics

Here is the thing,
the crux of my issues
probably the reason I write this blog.

Once upon a time, I had a wish list.
It went like this:

Fall in love with a really good man.
Make babies.
Love one another.
Work hard.
Learn much.
Enjoy life.
Celebrate being a family.

And then...
then, dare I say it?
Scared, I dare:
Then:
{shhhh} i got it.

I got a lot more too.
Circumstances. Life. Complexity. And that includes autism, too.

But how can a woman complain
Who got everything she ever wanted?
I mean...
Wow! That is some kind of greed right there sista.

To whom much is given much is expected, right?
Nothing important is easy, right?

So here it is. The crux. The seed.

I have to stop expecting my children's childhoods to somehow make up for my childhood.
It's not all about me. *It's not much about me.*
My kids are not my parents.
They don't owe me anything.
I am the grownup. I owe them everything.
These are my painful truths that I confess to you.
I need to wrap my mind around them.
Then I will stop forgetting to relish having everything I ever asked for -- plus a little -- extra.

And I will exude the gratitude that I feel today, and never let it go again.

Monday, August 27, 2012

Just A Little Thing

People ask each other conversationally about their families, their children. It's well meaning! It's friendly!

There can be landmines for so many reasons though.

Today I said something careless to a new friend and stepped on a truth about her family.

Today a colleague said something that caught me all awkward about my kids, finding me stumbling over my answer like this, "Well, um, but, see, um, my son has autism, so..."

My new friend handled it with grace; no problem, she forgave my mistake.

I try to handle it with grace, too, to let the awkwardness pass quickly away.

And the best outcome is when we all try our best, and are understanding, and forgive one another. We are all just human, we all mean well, let's all just be friends.

I will work on not making assumptions, though. I will work on not speaking carelessly. I also am trying to let go of "but" when I talk about my boy. I am going to try for "and" instead.

My son has autism. And he is wonderful.

Sunday, August 26, 2012

Hitting Homeruns

This weekend we took our littlest, otherwise known on this blog as Peaches, to spend a week with her grandparents a couple hours away; her school doesn't start until after Labor Day, but her dad and I have to work and her brother, Rooster, is already back to school, so J's amazing parents came to our rescue.

The kids love going to see Grammy and Grampy. The grandparents are wonderful, loving, kind, and smart - what's not to love? Their home is beautiful and full of amenities we don't have, like an amazing media room, and a pool. But what I think is the best part is that we all DO THINGS together when we are there. We do FAMILY things, not just survival things. We do HEALTHY things, good things. At the risk of sounding completely melodramatic, this doing things business is what I live for, this family-doing is what I feel like I've waited for all my life.

We do things at our house, too, but somehow the two kids seem to outnumber my husband and me. Sure, mathematically that might sound to you like it makes no sense, but it's still true.

This weekend, Uncle Richard was there with Grammy and Grampy, making it 5 grownups with two kids, which somehow gives us almost just enough hands for what it takes with my two kiddos. Trust me on this.

But my favorite moment this weekend was when I was the only one whose hands weren't needed.

I walked out to the yard and watched as Grammy and Peaches played a paddle ball game in one corner while Grampy, Uncle Richard, and my husband taught the Roo to play whiffle ball. I'm no good at either, but would gladly have played along, only in those minutes, the DOING I needed most was to stand, watch, appreciate, and remember how lucky I am. How lucky we are.

Peaches had fun with her Grammy. Rooster had all the guys on his team helping him connect with soft pitches. I cheered for Rooster. I cheered for Peaches. I yelled, "Good job!" I yelled, "Nice try!" I yelled, "So close! Almost!" I yelled, "Score!" All the yells were the good kind while we DID stuff outside! Everyone felt good about themselves. Everyone was learning, trying. We were happy. If I'd had a camera handy, what you would have seen was love.

Fifteen or twenty perfect minutes.

You hear so much about the hard stuff. I had to share these perfect minutes with YOU.


Wednesday, August 22, 2012

Conflicts of Interest

Some of you who read this blog have been asking if school is going any better.

It's not.

I avoid writing about it when I feel so conflicted as a parent and an educator.

It's not easy, as a teacher and a mom, to say: I think my son has had very poor teachers. To say: I am losing my faith in my state's public education. To say: I don't even feel welcome at my child's school, let alone know how to make it better. To say: As a teacher, I cannot afford the schools that might be "best" for my child. To say: I don't know how much longer I can make sense out of going to work at a wonderful school each day knowing I have to send my son to one that is mediocre and does not share our value system. To say: But I just can't imagine home schooling would be best for him, our family, or me.

Those are very difficult things to say.

Monday, August 20, 2012

My Vow



I was inspired by I Am An Autism Parent, to which I subscribed, to write this vow. If you are an autism parent too, I encourage you to check out the I Am An Autism Parent web site, written by Tim, and read the vow he wrote to his son. Write your own vow, and share it with Tim at this address:
tim@iamanautismparent.com

Dear Rooster, 

I am not always the mother I hoped to be, but I make you this vow: 

I am right here with you, and your sister, every step of this journey, whether we are physically hand in hand or not. 
My mantra for us all will always be the same: try, learn, love, and be happy. 
I will not ask more of you than I ask of myself in this struggle; I will ask us both to be our best, our most joyful. 
I would never trade you for anyone or anything else. 
I have loved you since before we met, and just as you were within me, I am within you.  
You are a beautiful person just exactly as you are, and I promise to never forget it, to never let you forget it. 
I pledge to always love you with the strength of ten tigers. 

Love, 
Mom

Saturday, August 18, 2012

Fall, Fall, Fall

On the first day of third grade, the whole family went to drop off the Rooster. We had prepped, we had visited a day ahead, we had the uniform clothes ready, we had our camera, and after a summer of tutoring and camp and social skills classes and relaxation and play, we were ready to face public school again.

We were not ready. We were NOT at all ready.

After ten minutes of hugs and kisses and pictures, the boy walks tall and proud to his line, where a blonde girl named M sees him and goes into a loud, screaming fit. "NO! NOOOOOO! He can't be in OUR CLASS! THIS IS THE WORST CLASS EVER!" She runs to tell anyone who will listen. The teacher sees her.

"Get back in line," he tells her. That's it, that is all he says. "Get in line and stay there, facing forward."

I grab my boy, who is now half-size, deflated, head hung. The rules are clear: I am not supposed to deal with other children, and the teacher is right there, near us, so I turn to my child, his chin in my hand, my heart in his body. "We LOVE you, Rooster. You are the best boy in the whole world. We are proud of you. You are smart and strong and beautiful. Be nice to everyone, and if anyone is not nice, ignore them. We can't wait to see you later."

The teacher marches the line toward the building. I quickly grab the aide, make sure she understands what just happened, that she will help. I find the resource teacher, tell her too, suggest social stories, implore intervention. Later my husband and I will begin sending emails, but first I need to drive to the gas station and cry.

I have not received a single email in response. The rooster? His feathers seem unruffled, but that's just surface, you know? I dread the next 170+ days ahead.

How was your first week of school?

Thursday, August 2, 2012

Mommy Fail

When you have a kid who requires an epi pen on hand at all times for life threatening food allergies, AND who avoids the stomach trouble of eating gluten, AND who can't advocate for himself because of autism and language challenges, here is what you do:
  • Triple your grocery bill. 
  • Shop at at least three stores a week.
  • Order from specialty stores. 
  • Never let people provide food to your kid that you didn't send along. 
  • Communicate urgently with teachers and aides about this. 
  • Stockpile special treats in your freezer for parties, etc.
  • Watch what you eat yourself for fear you might kiss him or leave your water glass where he might use it and then endanger his health. 
Here is what you do NOT do. 
Not unless you want to burst into a fit of tears with uber mommy guilt:

Forget that there is a very big, special celebration to mark the second to last day of camp, and only send in a regular, healthy lunch for him.

His sister told me about it, about all the goodies she had while her brother had none. And when my overtired and enormously guilt-ridden tears vaulted down my face like the American Olympic gold medal champions, this is what happened next:

The rooster climbed in my lap to tell me not to worry about it, that he would like to "kiss my nose" and "cradle me like a baby." And he reminded me, "Mommy, you put a chocolate chip cookie in my lunch today, remember? It was good, I ate it. I am happy with you. It's okay!! You pack good lunches."

When you have a kid who requires an epi pen on hand at all times for life threatening food allergies, AND who avoids the stomach trouble of eating gluten, AND who finds a way to comfort YOU when you have a mommy fail, here is what you do:

Find every nut-free, gluten-free candy and treat in the world to put in tomorrow's lunch to celebrate the last day of camp and the best Rooster in the whole entire world.

I'm sorry, Rooster!!! I LOVE YOU. 

Saturday, June 9, 2012

I am at Hopeful Parents again today. I hope you will visit me there.

Friday, June 1, 2012

Our Community Keeps Growing

Jess, at A Diary of a Mom, wrote a piece a while back for a friend who was joining the sisterhood of mamas on this road with raising amazing kids. I've had many reasons to think of Jess' post lately and to feel grateful for it, so time to provide the link: http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

Thanks, Jess.

I would prefer easier roads for all the kiddos out there, for my friends' kiddos, but this is a powerful and beautiful community, and there is much joy and hope.

Friday, May 11, 2012

Fishing for a Gold Star

Okay, look.
I am NOT good at putting on the brave face.
But I HAVE been doing it.
Have you noticed?
If you have been around these bloggy block with me for a while you know I'm prone to more gnashing than I've done lately. More vinegar. Some wallow.
So perhaps you think things have gotten easier.
HA!
They have not.
But I've been trying to be a better sport, a little more half full.
And now I guess I am showing my true colors.
Which is to say I can only manage to keep doing this if I get my gold star for it.
This makes me deeply ashamed of myself for being so small, but also very proud of myself for keeping it real.
Ya know what I mean?
I just need one single person out there to say: Good job. Keep bright-siding.
And then I will.
Can you help a sister out? It IS almost Mother's Day and all.
And a very happy one to you, too.

Happy Today

Dear Rooster,
Sunday will be Mother's Day, and I thank you for making me a mother.
The week after will be your birthday, and I thank you for being my son.
The first week in June will be the 10th anniversary of your dad and I getting married, when we officially started our journey toward you and your sister.
All the milestones that stretch ahead of us and behind us remind me that every day is precious. I see each part of my life differently since you entered it, and that is a very good thing.
If you should ever look at my life for clues, the way I examined the family history of my mother, her parents, and theirs, read this post, and know that the biggest single thing of all, the biggest thread from me to you, has always been love. Amid the noise of all my yapping with worries or stresses or anything else, you have given me more reason to celebrate than you could ever imagine.
Happy everything.

I love you, so big, forever,
Mom

Wednesday, May 9, 2012

Tuesday, April 24, 2012

The Blessing of a Meltdown

Have you ever heard of "the blessing of the skinned knee?" I thought of that tonight.
My kiddo is in bed, screaming and crying and melting down about not wanting to go to bed. But it's not Rooster. He's in there comforting his little sister, whispering encouragement that she should calm. down. As I type this, as I pause to eavesdrop, I hear her sob, "Thank you, Rooster, for helping me today." And that, my friends, is what I'm talking about.
And now, it is all quiet, save for my joyful typing sounds.
Today was not awful.

Sunday, April 15, 2012

Pickin' and Choosin'

This weekend my son caught a ball ten times in a row. (Doesn't matter that I threw it gently from a close distance, it's a big deal.)
This weekend I got a facial. The first one in many years. I had a coupon, too -- double score.
This weekend I met up with a friend, someone I haven't seen in years, for tea. Just us -- our husbands stayed at home with kids.
The sun shined, but not too hot.
My husband called me beautiful. (I slip him magic pills that make him believe I am still 29.)
I went for a jog, and felt good enough to tackle the bleachers stairs afterward too.

If you had a hard weekend, don't hate me: That is what I choose to remember from this weekend. I leave the rest behind.

Friday, April 13, 2012

Party On

This will not be my first post about birthday parties.
I fervently hope it will be my last. In fact, on my next birthday, I plan to wish on the candle (I only allow one - I don't want to set off the smoke alarm) that my family celebrates hundreds more birthdays, very happy ones, but without the parties that make me so inclined to open up a bloggy vein and weep.

Next month, my delightful and complicated boy will turn eight, and I thought I had cleverly sold him on the idea of celebrating with his adoring family at an overpriced amusement park, eating Z Pizza and gorging on allergy-free cake. But his sister insisted on a party this year -- two weeks ago -- and even though we arranged a boys' day out for him so she could revel in girly paradise with her friends over mani/pedis, now nothing will do for him but a party of his own.

And I must admit to you the awful truth. I. Cannot. Do. It.
For the first time in 14 birthdays between them, I am foisting the festivity on their dad.

It's not just that I'm too tired, though I am weary to the bone. To the bone, I tell you. To the marrow.
It's not just that it feels only fair that daddy take a turn, since his usual contribution is pretty much lighting the candles and trying to pretend he can remember people's names.

It's that I can't bear the fact that my son's classmates won't want to come to his party.

There are worse problems. I can count with deep appreciation so very many blessings: that we have two amazing kids who are here to have birthdays, that we live in a beautiful and peaceful place, that we can afford to throw them a party, that we have people who love us.

But for me, loving my kids means wanting people to see the good in them, including wanting them to have friends.

I don't really know if Rooster has friends at his school.
I know he has enemies. I know he has people who tolerate him. I know he has frequent conflicts. But I don't know if he has friends. And this year, it makes me sad. It makes me especially sad as my husband pays the park rental fee and tries to make a celebratory plan. It makes me sad because I don't know if anyone will show up. After all, his birthday is the end of May, not long before school gets out, and he has not been invited to a single party all year. Not by a kid at school, and not by a kid outside of school.
And I somehow doubt it's because all those other kids' parents conned their kids into foregoing parties to hide from social ostracism at Disneyland. Wish I could.

Monday, April 9, 2012

April

A woman sits in front of her computer, trembling.
She can neither focus on what she wants to Google, nor can she stop vainly searching.
She tries every combination her rattled mind can make using the word autism, until it's too late to sleep and too early to rise, but never finds her way in any clear directions. So much for a degree in tech.
I want to reach her and tell her that the reason none of those digital pages have any answers is that the answers are just down the hall, where her son is in his bed. He is the answer, himself, to the question: Who is my child? Where is my child? He has been her question and her answer, and she should rest easy knowing that nothing anyone else ever says or does will change that he is her beautiful boy.
I cannot go back and help myself, when I was that woman trembling in the face of a word -- autism -- and the fear that the word was enough to destroy a family's hopes and dreams.
But I sit now in front of my computer, determined to find some path to other mothers, other fathers, who sit in front of their computers in despair; determined to tell them, I know, I know, I know. Hope, hope, hope. Sleep, sleep, sleep. Your child is your child. Autism is just a word. Be where you are, with your child.

Sunday, April 1, 2012

Learning

What is better than having the world's most talented educational therapist?
Having the world's most talented educational therapist who also is gifted at ABA.

Yesterday my son was working with the genius S, his ed therapist, on math, his nemesis. But it wasn't his complete lack of number sense troubling him. "We ran straight into his diagnosis today," S told me. He got very rigid about a set of directions, and he became extremely agitated because he thought he was going to be able to write a story, and then it turned out he was actually working with word problems. Perseveration, anxiety, impulsivity -- wham.

At the end of the session, S told me something like: Sure, we didn't get as much math covered as I would like, and as an ed therapist, that could bother me. But as a behaviorist, oh my gosh, this was big. He learned how to stomp through something, to stick with it, to calm himself down when he was in sensory overload. He got through the work! That is a big deal. I am so proud of him, and I want him to know that being able to do that is important.

When Roo finishes all his work and does it calmly, he gets a reward. He definitely lost his cool for part of the time, and he didn't finish everything. I was tempted to give him the reward anyway for trying so hard. But together we decided that he would get a reward -- just not the same reward he gets when he finishes all his work calmly. Instead, I took him to the library to get a card and check out 10 books. He tried to talk me into both rewards, but when I talked him through it, he sighed deeply and put his hand on my cheek.

"Okay, mommy. Next time, I want BOTH prizes. Now, let's go get some BOOOOOKS!"
I love that kid.

Wednesday, March 28, 2012

IEP Genius

If you ever have to go into an IEP meeting that might be in any way contentious (I probably could have stopped after "IEP meeting" to avoid redundancy), I beg of you, for the sake of your kiddo: Take a page from my husband's genius book - or should I say notebook? - about IEPs. Seriously, this is priceless advice.

See, we had our IEP today, and given the fraudulent and unscrupulous treatment our family has received previously, I went in with low expectations and high preparations. Three hours later, my husband and I emerged, weary, but satisfied, to drive to our separate jobs. I called him from my car.

"I just wanted to say that we did a good job for our boy today," I told him. Then I said something like, "I felt like our concerns and our son's needs were taken seriously today. I felt like the people in the room understand now that they can't mess with us and expect us to tolerate less than our rights. And you handled yourself very well."

And my sweet and wonderful husband laughed in a way that told me he had a story to share.

He asked me if I had noticed his notebook. I had seen it - I noticed he took careful notes, but I didn't read them, as I busily wrote my own notes. "Why?" I asked.

Just before the meeting began, he explained, he had grabbed his pen and scribbled a named in large letters on his pad. Underneath, he wrote a phone number. Then he casually left the writing in plain site for the duration of the marathon. I mean meeting.

The name? On his notebook? The name was of the attorney made famous in these parts over the last four decades for representing people with special needs, and successfully fighting to ensure that private and governmental agencies provide the services to which they are entitled by law. No one has fought harder or to greater avail to ensure compliance with IDEA, ADA, or the Lanternman Act, that this woman. She pretty much calls the district on their shameful acts, makes them straighten up and fly right, then sends them a hefty bill for her hard work, and says, "You're welcome." She says to the world: You will not abuse or neglect the vulnerable and the innocent. I think she probably has a fan club, and I would like to join it.

My husband never threatened legal action with my son's current school or district (yet), though parties withing the district have admitted to actions that would likely justify it; it didn't (yet) seem to be in Rooster's best interests, and right now, what is best for our boy is our top priority. Nothing is off the table - we just want what is right and what is fair, and we are committed to do what we need to for our adorable Rooster.

I am very proud to say my husband speaks quietly and carries a big notebook.

And so can you.

Saturday, March 24, 2012

Listen! Or Don't! For Your Own Protection!

I asked a woman recently to describe a time she thought she dealt well with an interpersonal conflict.

She said that once she had to deal with a special needs parent. She told the parent what needed to happen for the child but the stubborn parent wouldn't listen to her.

Something happened to my ears. Only for a minute, but it was surreal.

Have you ever had this happen?

My ears picked up an entirely different channel. For a minute, I could not hear this woman's story, which had started to demonstrate serious flaws in her reasoning and judgment.

Instead, my ears picked up on a drum circle. And a hazy radio signal that was going in and out of channels.

I refocused. Once again I could hear the interviewee tell me how this unreasonable parent had wanted her child to have "special" treatment and how that isn't fair to the regular kids, and I saw her catch herself and realize to some degree her answer was not a good one. It wasn't linear, coherent, or applicable, and it didn't demonstrate empathy or skills. I was clear as a bell as I watched the woman reframe and ramble back toward a semblance of an answer.

There were other, good conversations with different people that day, and in the days that followed, and never once did my ears do that funny thing again.

I wondered what had happened to me for that minute. Was I going crazy, hallucinating drums and hearing voices? Should I talk to my doctor about my ears?

Then, even more recently, I listened to people talk about a new movie that is coming out, a movie that is supposed to be funny. In fact, my husband's work even has a connection to this film, so I was listening carefully when the autistic jokes ensued. My ears did that crazy business again.

Oh, wait. It isn't drums. Wait! I figured it out. That is my heart. It beats loudly, into my ears, sometimes when my feelings become so big and crash so loudly on the shores of my being that I am too flooded for words. Usually somewhat articulate, when my system short circuits like this, I can't speak or hear momentarily, and I think my automatic response is to try to hear all the little voices inside me -- thus, the static of the untuned radio.

I am a firm believer in non-violence. I hate weapons. Sometimes words are weapons, though, and sometimes they feel like sticks and stones.

This thing my ears do? That is what I call self-defense. Not the kind of self-defense claimed in the news lately, used to justify murdering an innocent child. No, this is the self-defense against verbal attacks against innocent children.

I don't want to fix this thing that happens with my ears. I want to market it. Let's all tune out the words that hurt, and listen instead to our hearts, until we can regroup enough to voice our articulate counter attacks.

Sunday, March 4, 2012

Thinking of Sandra Cisneros Again

Today, I was six years old. We all are sometimes, but today transported me to a very particular summer day at a campground in Virginia in ways that have me once again staring, mystified, at the concentric circles of life and family.

I am at the playground, granted permission by my mother to play unsupervised until lunch time, when I will make my way back down the winding lane to our 40-foot-long air-conditioned "camper" where she is watching television as she cooks. Only the girl playing on the merry-go-round tells me she has the Barbie Dream House (the one with the elevator) that my mother refuses to get for me. The next thing I know, my father is angrily retrieving me from the girl's Jet Stream, dragging me back to our site, where my mother abandoned her mini-television a few hours ago and has locked herself in our station wagon to rock, somewhat-catatonic, back and forth, hugging herself. It seems lunch came and went but I did not, and the men had begun to discuss searching the water, calling the sheriff. She sees me through the window and moans and moans as my father opens the car and pushes me into it, into my mother's rocking.

If she never entirely forgave me, I get it now. I get it in a way I wish I didn't.

The situations are entirely different, and exactly the same. My mother believed in benign neglect, and in the 1970s I had free reign of a large campground from the time I started kindergarten. Today, driving to the park, I explained to my daughter that she had to be where she could see me at all times, because last time at the park I got nervous when she played hide-and-seek with her friends too close to the busy urban streets and the crowded parking lot filled with strangers. I do not so much as leave her in our own front yard unattended.

But when I turned around and found the backseat of my Prius empty today, maybe three minutes after parking and gathering our gear, I knew my mother's heart in the back of that old station wagon. When I forced my brain to accept that, indeed, my child had suddenly vanished, and I was not asleep, having an illogical dream, many thoughts pin-balled through my head all at one time, none too productive:

Had I, when adjusting my parking in the space to get maximum shade, run over my child as she silently slipped from the car? Four times I bent and peered under my vehicle, pointlessly. Had she, as a joke, hidden in the far back of the Prius, under our earthquake blanket? Thrice I flung around the blanket. Did the car next to us grab her just before pulling away? WAS SHE PULLING A STUNT? Did she head for swings, to the left? To the playground, to the right? To the stores, behind us? IF SHE DID I WAS GOING TO PUNISH HER LIKE SHE'D NEVER FORGET. Where was her school's event, the reason that we came to the park? Should I go look for it? But what if she came back? How many minutes had it been already? Why hadn't I agreed to bring my husband and son? Why were there no police nearby? Why were there so many people nearby? Why were there so many tragedies in the news lately? Why hadn't I been paying closer attention? How did she shut the door without my notice? Had I zoned out? Had I .... had I? Lost my mind?

And the whole time, my scream: PEACHES! PEACHES! PEACHES! It wasn't a call, it wasn't a question mark, it was an exclamation each time, unmistakable terror tinging the edges. It was my mother, rocking.

After at least five minutes, a pink blob comes into focus, quickly cresting the hill toward the parking lot, and I become certain over slow, drawn out moments you could count on your fingers that a little girl needs one tremendous, gigantic, enormous punishment for torturing me, for abandoning me in a station wagon, borderline catatonic.

She is so sorry, so sorry, so very sorry, when she sees my face. She had followed friends to play, she cries, only to realize she'd gone without me when another classmate arrived and announced, "There is a mommy in the parking lot yelling PEACHES, PEACHES!"

She sits in the grass where I have crumpled and begs me to be happy again, to take her home, to forgive her. I am fury, I am fear, I am forgiveness, and as much as I want to punish and shake her til her teeth rattle, I simply talk, and kiss her, and tell her she has to stay where she can see me, where she can see me, where she can see me, like I told her, like I told her, like I told her. I tell her most of the people in the world are good, but that I was so scared, so scared, that someone not good had taken her, or that she had walked behind a driver who could not see her little body. Her little body.

I do not tell her I had done the same thing at almost her exact same age. I do not tell her that all I had wanted today was to go to this typical school event and do our best to fit in some and connect a little and get some volunteer hours and not stick out overmuch for once. I do not tell her that I know exactly how she feels -- sorry, guilty, responsible, scared, vulnerable -- that I know exactly how my mother felt -- sorry, guilty, responsible, scared, vulnerable.

We dust ourselves off slowly, and walk back down the hill, around the corner, to raise money for her charter school, running laps along with everyone else, but not really.

This post, this day, these experiences and feelings, had nothing to do with autism, only that is never really true.

Saturday, February 25, 2012

This is How We Roll

I have the best and most generous husband.
He loves me, supports me, puts up with all my craziness, and also deserves a dad of the year award. He is so great that he will not mind me telling a story about him; he knows we laugh with him, not at him.

So he calls me from the store today, and it goes like this.

"Hey, honey," he says. "I heard you say we needed bread for the Rooster so I stopped at the store to get it. Do you need anything else?"

"Oh, thanks, J. No, I just really needed the bread. Feel free to pick up some protein the kids will eat too, if you see something good, but bread is the only thing I really needed urgently."

"Okay, bread and protein, and we will see you soon."

He comes in with four bags of groceries. I put them away.

Later that day, he says, "I'm glad I stopped at that store." Shopping is not his usual thing, and he's feeling good about his efforts. "Did it help you out?"

I say yes, it did. "Thank you," I say.

He says, "We should be okay for the week ahead now, right?"

I go to about 4 grocery stores a week, but I don't want to sound unappreciative. I say, "Well, I might still need to shop a little. Because... did you get any bread? Because I didn't see any."

He scratches his head. "Yes, I did. I bought bread. Didn't I? I mean... I went for bread right? I thought I... wait. I will look. Let me check the... I ... no. I didn't get any bread."

He did buy chocolate muffins. He did buy donuts. He did buy pizza.

Mind you, none of those are for himself, or for me. They are free of gluten, dairy, nuts, and soy, from the ridiculously expensive specialty store we consider ourselves lucky to have in the neighborhood, where we go especially to make sure our Rooster always has his favorite, beloved, Udi bread.

People, this is just who we are. A rooster who has special bread needs. A somewhat organizationally challenged dad who always, always helps his ornery family. A peach who spent the day trying to negotiate her way into a donut or a muffin (to no avail). And a mom who blogs about it.

Sunday, February 19, 2012

Facebook Wisdom

Right now, my son is sitting on the sofa with an apple in his hand listening to Greek mythology on the iPad. He will be eight in about three months, and he has autism.

Right now, my daughter is in the bath tub playing with toys. From my spot in my bedroom, I can see her through the French door to the master bath, talking to herself, acting out some kind of scene. She will be six next month.

Today I really liked it when some of the mama's I adore in the blogosphere posted this on facebook: "It's hard having an autistic child. It's even harder being an autistic child." I think it's true and valid. I feel like I could see my son posting it when he's old enough, if fb is still around in another five or six years.

I also think it's valid to post this: "It's hard being an autistic child. It's even harder having an autistic child." It might seem impossible to think both are true, or it might make me sound obnoxious to say it. But that's okay. I also liked it that some friends posted this Dr. Seuss quote: "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."

When it comes to the question of autism's difficulty, what I feel is this: it's all about perspective, this life of ours, and along with it, this business of "harder." After all, can you really compare? Is suffering really measurable? How many of you believe that those pain-o-meter pictures in the hospital that ask you how to quantify your distress really mean that the doctor understands what you are going through when you tell him you are at level 3 or 5 or 7?

I can't speak for my son, who has autism, about how hard his life is or isn't, from his perspective or my own. I can't really compare my challenges to his. But I value the reminder in the facebook post that he very well might have the perspective that autism is harder for him than it is for me. I know that there are days his sister would likely argue it's no walk in the park for her, either, that her brother has autism, and I think she'd have a valid point, a right to her perspective and to some kind of fb quote all her own. I'm okay with anyone who wants to say they have it rough, who want us to know their perspective on how hard things are. Difficulties come on a spectrum.

I'd argue, too, that there could be a lot worse things in our lives than having autism in it. One would be not having autism in it, if it meant that there would not be a little boy sitting on the sofa with an apple in his hand listening to Greek mythology. Things at our house seem pretty hard through some looking glasses. But warm baths and juicy apples and learning and imaginative play and love look pretty beautiful too. I know my mama friends would agree with this without even asking them.

I just saw yet another quote on fb that resonates for me, and with this post, and so I will leave you with that: "Feelings are much like waves, we can't stop them from coming but we can choose which one to surf."

Thanks, friends. See you on facebook.

Sunday, February 12, 2012

What Next?

My husband and I often talk about what to do with what we have learned about autism.

I hope the metaphor doesn't offend, but I tend to call it "making lemonade."

We have no desire to profit from autism by exploiting our son or our story. We have no desire for anyone else to exploit our family. We do have a desire to change the world.

My husband is a writer, director, and producer. I am an educator. We ask ourselves should we write a book, design a web site, make a movie, start a school, begin a revolution? Are these crazy impossible dreams?

Maybe we should just keep putting one foot in front of the other. Or maybe there is an incredibly satisfying lemonade stand in our future that can make a difference in the autism community.

Any thoughts?

Sunday, February 5, 2012

Good Stuff

Today I am faking it til I make it.

In other words, I'm not going to tell you how sick we've all been, or stressed, or about the battles.

Nope! Here is what is going RIGHT:

  • Rooster came home the other day and said, "Let's practice math now! I want to earn my reward!" The school has also agreed to increase his math support and stop forcing him to do the grade level work he just is not ready for yet. Yet, right? Yet.
  • My husband wants to help me with my work so I get to watch part of the Super Bowl. Love that guy.
  • I met an awesome mom at Social Skills the other day. She promises to hook me up with some resources I didn't know about before.
  • We went on a date last night! Our former aide came to babysit at 7 so we could catch a movie for the first time is a couple years. The Descendants was sad but good, and my friend Grace is in it!
  • My mom and step dad are coming to visit us and my in-laws for a family weekend in April!
  • I have some new ideas. Some crazy, some great, some scary, some all of the above.
  • I'm still standing.

Share your good news, if you don't mind. I'd like to celebrate you too.

Friday, February 3, 2012

Says it All

I have written 505 posts for this blog. I just saw that number for the first time and can't quite process it. I write ten times that many in my head during my commute. I have so much to write about - just not enough to say. I really only have about 3 things to say. I just have endless ways to say it.

I think things are getting harder.