Tuesday, September 16, 2014

Too Much Homework

I enjoyed teaching Rooster to spell beautiful with the trick "be autistic, it's beautiful," but we had a new list yesterday and it included the word disorder. I called it out, he wrote it down, then he looked up at me and said, "disorder, like when you have Asperger's Syndrome or autism." Then he wrote: not in order. This time, my chest knocked a bit, and I needed a big yoga breath.

"Yes, when you have a disorder, you might learn things in your own order. Just like you learn lots of things differently than the way I do. You learn them! Sometimes you learn them sooner than I do, and sometimes you learn that later, but you certainly learn them in the order that's right for you!"

Today is IEP day. I feel so tempted to tell the school exactly how I'd define their IEP. When we got the notification last week, it looked different, and it said they were required to let us know that they would be requesting a change in eligibility, to emotionally disturbed. Naturally, I felt confused, and upset. With shaking hands I called the school, and I was told, "Really? Ooops, that was just a clerical error. We don't send our own forms any more, some secretary in another office does them and she makes mistakes." Sometimes I have an urge to tell my son he does not have a disorder, that everyone in the world has their own order to things, and sometimes it is all I can do to resist telling him it seems to me his educational system and his school are in disorder, while he is perfectly fine just the way he is. But I realize that saying this would not serve us well.

The class can move along to "disorder" if they must, We are just going to concentrate on beautiful.

Friday, September 12, 2014

My Beautiful Speller

Last night I called out spelling words to Rooster. He kept missing the same one every time: Beautiful. I said, that one is tricky, let's see if I can help you come up with a trick.

It starts with Be, right? Like, "To be, or not to be."

And see the "aut" part? That is the same way we spell autism, and you know how to spell that.

So here is the perfect way to remember: Think: Be autistic, it's beautiful.

He smiled, and he got it right.

First thing this morning I asked him to spell beautiful. He said: "B-E..."

He paused a long moment, cocked his head.


Long pause, and a smile.


Monday, July 28, 2014

Listen To The Story

Peaches is listening rather patiently as Rooster tells an involved tale of conflict and chaos in the car. All of a sudden she interrupts. "I don't get it she says." We have a long pause. Then, "The bad guys are trying to destroy the good guys. And the good guys are trying to destroy the bad guys? But if they are trying to destroy, aren't they bad guys? How can you be the good ones if you are trying to destroy?"

My child. She speaks truth. I think about this, about how I want to keep thinking about this, how I want to explore it more, wrestle with the ideas she is surfacing, and I think: I might need to start blogging again.

I have always been a selfish blogger, in what I think of as the "healthy selfish" sense of things. I have not really blogged FOR anyone else. For me, it's not about audience, except for myself as audience.

Blogging helps me process, and knowing I am blogging helps me listen.

I realize this was never a blog about autism. This is a blog about my family. Autism is a part of my family, and I am no longer sorry about that.

And I don't want to destroy the autism in my son! I love him exactly the way he is, just as I love Peaches the way she is, knowing autism has been an important part of both of their lives. Our lives.

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.