Tuesday, November 19, 2013

Rooster Says...

My son, aka Rooster, dictated this to me:

"Autism is like a fog that clouds your brain but you can fight that fog with learning. Autism is simply a hard thing for most kids. It does not make life hard it just makes learning hard. Autism makes you special with all the rich imagination in your brain. My experience with autism is very hard. I tend to do strange things. I tend to talk about strange things that no one wants to talk about. Autism makes it hard to make friends. Autism does not make families sad, it makes them happy to have their own special kid in their life. Autism does not make people’s lives too hard, it makes their lives lighten up a little bit. They can be proud how much their kids are learning and how they are managing life with autism. It can be hard when you have a life with autism but you still can make friends."

I don't yet know how I feel about WHAT he said, but I know he has a right to his own feelings, and so I felt like I had to share. 

Friday, June 21, 2013

Where Are They (Ahem, We) Now?

Right now I am imagining someone just stumbled on this blog.

This new reader knows a child who sounds like my Rooster did several years ago. Reader wants to know... how have the recent years been for Rooster?

Of course, Rooster is a case of one, and the child Reader knows might have a very different path, or a similar one... we all have unique journeys.

But I was once like this Reader, and I found similar stories to my own, and wanted to connect.

So, Reader, if you know Rooster and his family (my husband, J; my daughter, Peaches; and myself) struggled substantially through the difficult years when he was diagnosed with autism and began school, let me tell you a little about our trajectory from then to now, the summer before fourth grade. But I will work backward.

As I type, my kids are pretending to run a dance studio. Peaches, who happens to be typical, plans, naturally, to be the star. She has hired her brother to be her bodyguard, dressing him in almost all black, including the large, oversized shades. The one exception is the pink and green bow tie she insists he wears. She pays him from her piggy bank, knowing he is motivated, as he is saving to get his own talking toy like the one she purchased from her savings. Today, the toy that has a voice I found grating, came on in the other room. Rooster told Peaches, "I think you are neglecting your toy. Clearly she needs more attention."

Rooster's sister is his most accepting and inclusive playmate, though they fight like siblings do. Looking back, finding friends has been the hardest part of our journey with autism. They are few and far between, but there ARE friends, and they are rare treasures. Rooster still has unusual expressive language. He still processes slowly, has somewhat restrictive interests, and can melt down. However, the fears I had that he would never take turns, share, express empathy, engage in imaginative play, or sustain a conversation proved unfounded. I would have loved him with all my heart no matter how he developed, but he has continued to show me that he is full of surprises of many kinds, and while he is on his own unique path, it's a path of certain growth.

Rooster continues to struggle academically. He has dyscalculia, a math disability, and ADHD, in addition to autism. He needs an aide in the general ed classroom, and a resource support and a gifted ed therapist for math. Reading appears to be his greatest gift, and today we will go to the library to wallow in the wonders of words. Our family shares a deep, abiding joy in books.

If, Reader,  you are wondering what tools have proven most useful to our boy over the years, my opinion is that we benefited tremendously from (not in this order necessarily, except the first one, which has been, beyond any shadow of a doubt, the key that unlocked all the other resources time and time again):

  • the blogosphere (other blogging families have been virtually lifesavers)
  • families we have met in waiting rooms and autism meet-ups
  • social stories
  • ABA
  • gfcf diet (NEVER in my wildest dreams would I ever have believed that until we tried it)
  • time, patience, hope, love
I have said it before and I will say it again: doctors never provided us much value, despite going to the ones with the best reputations and highest bills. From general pediatricians to a variety of specialists, their advice and tools were mostly mediocre and sometimes wrong, painful, and detrimental. We do have a good developmental pediatrician now, but the best doctor we have ever seen is the one whose doctoral program focused on special education, not medicine. Other things I wish we had skipped: speech therapists provided by schools, ADHD medicine (we did a few trial runs before realizing they were NOT right for our Rooster), and osteopathy. We would never advise others against anything (see the unique path philosophy above), they just didn't fit our needs.

Now, if you will excuse me, I need to check on the bodyguard and the diva, and get us ready to pick up some amazing stories in the library. Amazing stories are like life blood for this Roostery clan. 

Thursday, June 6, 2013

Seize the Brutiful

My son's recent birthday has me thinking about milestones and landmarks and such.

He turned nine -- halfway grown. Halfway grown, going in to fourth grade. For the better part of two decades I worked in a school that held K-3 in one building and grades 4-6 in another, so I always thought fourth grade meant "big kid." 

I'm forty-one, I've lived close to half the length of my grandparents' lives. They were my heroes and I miss them.

My daughter turned just turned seven.  My grandma has been gone now more than half my little girl's life, and she never met my grandpa.

In a year my son will be the age I was when my father left my family for good. Unthinkable to leave my babies... and they are still, for sure, my babies. 

In college I dated a boy who made the mistake of wondering aloud what if we got married? I laughed without thinking and hurt him when I said I had no intention of getting married, and certainly not so young. He married the next girl he dated, and now has a son about to go off to college. I see his son's photo on Facebook and cannot grasp it. At all.

This weekend my husband and I will celebrate eleven years of marriage and thirteen years as a couple. He looks, to me, pretty darn close to the way he looked the day I met him. Okay, so he's a little bit cuter now. But he was plenty cute then, beautiful enough in looks and in spirit, that I thought, ever since the night we met, he might be the perfect person at the perfect time to ask me, "What if we got married?"

And when he did ask me? You know I couldn't trust that much goodness without double checking it, and so I negotiated, and I said, "You know I want kids, right? You know I want more than just one, right? You know I'm complicated... " And he told me, as he has since the beginning, "Oh, I know all about you..." And he does. And he told me, as he has since the beginning, "Why don't you just let yourself enjoy the happiness? It's okay! Let's enjoy it together!"

J has always said, "Enjoy the vigor of your youth! Enjoy your vigors! You will never be younger than you are today!"J has always said it's okay to be happy, and he has always offered to hold my hand if being happy scares me too much.

In our early days, we used to hang out in front of mirrors and smile at the reflection of our arms around one another, the way we kind of resembled one another in a way, and how we could never stop radiating our joy at finding one another. We held hands as we walked ourselves down the aisle.

Now we sit and marvel that we aren't those young twenty-somethings anymore, as we exchange neck rubs and swap complaints about our aches and pains. It can look, for all the world, like I'm disgruntled. I totally get that. I can appear ungrateful and negative and very, very tired.

Because it's been nine long years helping our son navigate autism, asthma, ADHD, ocular torticollis, night terrors, and food allergies. It's been harder especially since I haven't had my heroes, my grandparents, to guide me through life's challenges anymore, challenges of raising a little diva, or going three and a half years straight without any sleep. I'm road-worn.

But at the same time, my son's recent birthday has reminded me, as birthdays do, of the gratitude I feel for every candle on every cake, gluten free and otherwise, and every day, good or otherwise, in between. Glennon Doyle Melton of Momastery says life is brutiful. I get that, I really do.

(Recently I stumbled across a blog post by someone all full of self-righteous indignation toward Glennon, taking her to task for not wanting to be all cheerily carpe diem 24/7/365. I think that blogger really just wanted to feel superior. Who knows, maybe I'm being very ironic and superior myself, calling out someone else here, but that's not my goal.)

What I'm trying to say is that my son's recent birthday didn't have me thinking life is perfect, or life is terrible. It has me agreeing with Glennon that life is brutiful, and we can do hard things.

Sunday, May 26, 2013

To think that I am enjoying a wonderful weekend and actually feeling guilty about it, you might need to read this for context:
Yes, long weekends are good things. Also, I am filled with gratitude for heroes -- so many, many kinds of heroes.

Friday, March 22, 2013

The Heart Is Searching

I don't share much about our little home, but I love it very much. It is a home to us, while so many places I lived were places I lived.

Tuesday I plan to talk to a realtor about selling our house. If we move two streets over or more, we move into a district that we can only hope will treat us better than the one that serves our cozy, sweet, homey home (with the lovely trees and shady street and indulgent bathroom and best neighbors).

My boy comes in and says, "Mommy? Can I get cozy with you? Can we cuddle up and watch storylineonline.net?" My boy says, "Can I kiss your cheek, mama?" So where he goes, where he finds joy, where people welcome him, that will be our home. My family is my home.

And so many places where he's gone to school have been just places where he's gone to school, and I want him to have a learning home.

Wednesday, February 20, 2013

Media Alert: I Declare WAR

I have contacted the media.

Tonight, my children and I played a modified version of that good old standby card game, war.

We played for 15 minutes, taking turns, cheering for one another. We all understood the game, and we all had fun.

Never have I experienced this as a parent. I am not sure I can really believe it happened.

My daughter will be seven next month and my son nine shortly thereafter but multiple challenges stand in the way of something as simple as playing a card game together. Tonight, we declared war on those challenges. We achieved a million miles of success.

I have no idea who won the game.

I am pretty sure we all did.

Thursday, February 14, 2013

Valentine's Day in the Life

I share this because I welcome any suggestions. 


Dear Principal, Teacher, Aides, and Resource Teacher, and After School Teacher

Tonight, as usual, we sent Rooster into the bathroom to brush teeth. In a few minutes, we heard sobbing. We found Rooster curled up in the empty bathtub in his pajamas inconsolable. Below are some of his comments, with hesitancy about using names but I think open communication is important and honestly Rooster appears to be in a crisis:

“When I was born, I wanted to be appreciated. At my school, no one appreciates me. I hate it there! It’s not fair.”

“V tells people I’m not smart.”

“I have friends but I lose friends.”

“My aides and my classmates make rules that are not fair.”

“[My aides] are like bystanders! They don’t help me!”

“I don’t have any friends and the people at school are cruel to me! And no one cares!”

“I want to be accepted but no one will be my friend.”

“My school is full of bullies! No one will play with me! It hurts!”

"I feel so lonely and I don't get any respect from anyone!"

He has never expressed these sentiments before, and self expression has long been hard for him. Rooster tends to put on a lighthearted expression at all times at home and to keep conversations brief. This outpouring of emotion and details shocked us. We don’t simply take all the comments at face value, but we certainly respect that this is how he truly feels. We do not know what brought this on, but we are determined to support him however we can. Today is Valentine’s Day, and our son went to bed talking about being heartbroken, and how he wished he could never speak to anyone again at his school.  He used the word cruel a half dozen times, sobbing and clinging to us, which we have never seen before.

We need to meet as soon as possible. We need a plan to support our son and help him feel safe at school. We need a team of support for Rooster. We need it soon.

Please let us know the first available opportunity to meet. Also, please let us know if there is a counselor or school psychologist who could meet as well. 


Rooster's Family 

Tuesday, February 12, 2013

On We Go

If you asked me this morning how I feel about the frequent news stories about what might or might not cause autism, I would have told you I don't listen to those anymore.

I have two great kids, autism is part of our deal, and on we go.

For some reason, this afternoon while driving I heard that pregnant women who take folic acid blah blah blah, and my stomach soured.

For a moment, the insidious guilt and worry and insecurity wriggled its way through the crevices around my logic and strength and did a sneak attack on my nervous system.

And then? The rest of my brain mooned it. Just took the low road and one-upped that fearful stuff. Said, "Nuh-uh, you stinkin' drama. Git. OUT."

Ask me now. Ask me how much I care that you could Google up six trillion dozen ways from Sunday how I might have invented autism.

What's that? I am sorry, I can't hear your silly question, I'm going to hang out with two great kids (kids I love and who love me, kids who have a good life and kids I wouldn't trade or change) and autism is just part of our deal, and on we go.

Thursday, February 7, 2013


I have a new job, and it frightens me how much I like it.
But before I go off on a superstitious rant about that, I have a reason for mentioning this...
Recently as part of my job I had the opportunity to lead a service learning trip to a school for children with moderate to severe autism.
I felt too many things all at one time to know how to explain it all, but some things rang out loud and clear:
I like to be around people who want to treat everyone they meet with dignity.
I like to help people.
I like to learn, to teach, to lead, to grow.
And I love to know there are others who share those passions.

One thing I've been mulling over a bit:
The people at the school we visited said that originally they saw a small population with autism and a large population with Down Syndrome, but that has dramatically flipped, and our group saw only adults with DS who worked there, only children with autism in the classes.

As I said to my group, since there are more and more kids who have autism, in the future there will more and more adults who have autism. We owe it to our entire society to do a better job making the future for ALL OF US the best it can be. We need to invest in education to make the future brighter.

And those are my inarticulate thoughts of the day.

Sunday, January 27, 2013

In My Expert Opinion

When I hear people talk about "autism experts" the phrase always gives me pause.

I find myself thinking first about what makes an expert. The dictionary says something like: A person with comprehensive and authoritative knowledge in a particular area.

My mind immediately goes to people who HAVE autism. In a way, to me, THEY are the experts. I am a mom to a boy on the spectrum, and I am nowhere near being anything remotely like an expert even on my case of one. 

Then I find myself wondering, can you be an expert in something you do not have? I always answer myself: Okay, I agree that you can, because doctors are experts in all kinds of things they don't have, like cancer and heart disease...

But inevitably I then consider if you can be an expert -- have comprehensive and authoritative knowledge -- about something that is so large scale and yet so ill defined.

I mean, what IS autism? I know my son has it, I know the boy at the park has it, and yet they are not the same at all. We don't know why they both have autism. We don't know what to predict about their futures. Is there someone with comprehensive and authoritative knowledge about both these boys?

If so, where are they, what do they cost, and what do they have to offer?
Can't these experts get together and do something to contribute meaningfully to the community?

I am not saying that there are not autism experts, but I can't help feeling like there are more people claiming that title than makes sense to me.

Thursday, January 17, 2013

Nowhere and Everywhere

I have always had career interests and dreams, and I have pursued them. I did not put those away when I had children, or when we found out my oldest had autism. Two incomes always felt necessary for my husband and myself, for one thing, though I realize we could find ways to live more simply, but also work feels like part of my needs.

Which needs? Stimulation, socialization, satisfaction.

And one more: Usually, work is where things seem to make more sense to me, and I can feel competent.

So today's post is about how awful it feels to have a bad day at work. Not because I have a fragile ego, or because I think one bad day is the end of the world, but because of that otherwise unmet need to feel competent.

I became a mom nearly nine years ago, fulfilling a dream, and bringing joy to my heart. But I feel as though I have been waiting ever since to hit some kind of stride, to feel successful. My children are wonderful, beautiful, lovable people. I am proud of them and I cherish them. Around them, though, I feel so incompetent. So incompetent that reassurance does not help. Logic does not help. It's a feeling I have to own and continue to try to work through inside my own self, and I work on it, and ponder it, every single day.

Last night I had an important event at work, and I did not do as well as I would have liked. I got nervous, my voice squeezed out -- tight and weak -- in a way that embarrassed me, making it worse. It was not a disaster, but it was not what I had hoped, and the disappointment I feel in myself is bitter. I disappointed myself, and possibly others, too. I have to get dressed now and go back to work and face that.

I imagine it would be easier if I started off my day at home feeling strong and capable and successful as a mom. I got up extra earlier, made my kids a great breakfast, wrote necessary notes to teachers, set out warm clothes, and gave them wake-up kisses, but now I am going to try to wrench them from their beds for the third time and I feel sad about it because as wonderful as it is to start my day with my beautiful, growing children, I know that I had far more confidence about last night at work than I do about this morning at home, and look how that turned out.

Saturday, January 12, 2013

Big and Little

I used to teach in an elementary school with a few different buildings; after preschool, students moved to the K-3 building, and "big kids" filled the 4-6 building.

My son's school has only one building, but it hit me today that next year, when he goes to fourth grade, he will be a "big kid." I imagine some of my feelings match those of typical kids' parents. Because my Roo has autism, I feel acutely aware of the milestone in so many ways.

Will he still need a full time aide when he's "a big kid" next year? Probably.
Those suggested age ranges on toys -- do they match him now? I don't care, but I notice, and I am not sure.
Will the gulf continue to shrink, as it has, or will it start to grow? This scares me.
When is the best time to once consider uprooting him in the endless quest for a "good fit" in a school? We never stop looking.
When hormones kick in, what can we expect? Max on Parenthood comes to mind...

I adore my son, and he adds new kinds of joy to our lives each year, but I've often said we have never had an "easy year." He came into our lives in a bit of chaos with his 32-hour, vacuum-assisted labor, and almost nine years later our heads still spin, even as he becomes a big kid.

Okay, I spent fifteen minutes writing this. That is all the time I am going to allow for getting ahead of myself. I see the sun emerging on our Saturday morning, and I'm remembering to just be here, right now. Tomorrow has never offered guarantees of any kind. This day is an opportunity. I am ready to experience it with my husband, daughter, and my little boy.

Thursday, January 3, 2013

Look out World, Here We Come

We venture out more and more these days, emerging bit by bit from our self-imposed isolation, finding our way more into "The World."

I struggle with this.

My control issues, my insecurities, my fears about US and autism and "shoulds" cause the struggle, as much as I want to turn my back on these things.

I brought the Rooster to my office a couple of times when I was short of babysitters and he was off school for the holidays. I tensed, cringed, held breath, loved him, hoped, explained, tried not to apologize. I exercised my weak trust muscle, even though it twinged and shook a bit.

We did okay. I got my work done. Rooster connected in his own way.

A friend and colleague gently described the Rooster as "the happiest drunk at the party" and I willed myself to get what he meant and not turn it in to a reason to suffer unnecessarily.

We took the kids to more parks and parties and stores, and I exercised my weak patience muscles, including the one that smiles. 

I read about another mom honestly sharing her similar-but-different struggles in "The World" and had an epiphany --- realized how I have often silently and unfairly judged: "WHY don't you JUST STAY HOME? WHAT ON EARTH could you be thinking, taking your family out into the WORLD so much?"

Why should we cower? Who does that benefit? How can we grow in hiding?

I think 2013 is going to be our Roostery Family's year of Hello, World.