Saturday, May 29, 2010

May I...

My family has attended the same annual shindig now for times.

In 2007, we had an out of control 3-year-old not yet diagnosed with autism, and a fussy one-year-old. We had already sold our house, but had yet to find a new one, and we left the party early to go look at the place we now call home. We would have left the party early either way, though, because my kids had too many needs to make partying any fun. Our felt frayed as we met up with our real estate agent, but thankfully at least we found our home.

In 2008, we attended with our newly diagnosed 4-year-old and our toddler. They took turns melting down and having potty issues, as both remained in diapers and lacked communication skills. We stayed as long as we could before making our apologies and beating a hasty retreat, but I doubt we lasted more than 90 minutes.

By 2009, we had shocked ourselves half to death by trying and then liking having our son on the gfcf diet, which helped his digestion incredibly and his daily moods considerably, but made parties a challenge. Even though we brought along a bag full of food just for him, Rooster got angry not to have the same thing as everyone else, and he made some enemies of the other kids whose food he tried to grab and who couldn't understand his unusual language. Our daughter, 3, had developed a sudden and acute fear of dogs, and spent the party shrieking at our hosts' loving and wonderful canine. As we fled the party that year, everyone cleared a path, giving wide berth to my screaming and dysregulated offspring.

That brings us to today. The kids ate a huge meal before the party, and packed special gfcf brownies to take along. We talked in advance about the sweet doggie we would see and how we would be nice to her. Once at the party, my son, now 6, played with the other kids without much supervision or intervention, and sat calmly on a blanket listening to the band play. He only said one thing that caused me to flush crimson and do damage control. He also charmed some grownups who hadn't seen him in a long time. My daughter, now 4, chatted up the grownups, amused herself on her own playing with some toys, and never made a peep of pooch protest. Oh, Peaches had a few meltdowns over this and that - lately my NT girl gives me a harder time than her big brother - but nothing epic. Both kids swam with their dad, used the potty when they needed to, and took the news that we needed to head home without much fuss.

It might be snail-paced, hard won progress we make, but we do make progress.

Tuesday, May 25, 2010

Where I Am

When I get angry, I can shout, and shouting soothes my fury. Cathartic crying ebbs my sadness. But being pecked pecked pecked til I leave a bloody trail of superficial wounds leaves me a kind of numb for which I know no salve.

I've been bleeding in slow drips for several weeks, but you can fill an ocean drop by drop.

It's not any one thing, and it's not everything. It's still just too much though, and I can only sit quietly and nurse my scabs.

Tuesday, May 18, 2010

Two Hands

Even before I had children, it seemed to me that moms should get the gifts on their kids' birthdays!

Well, I don't even like receiving gifts on my own birthday, so I surely don't need any tomorrow, but I do feel a little like it's my special day, too; my boy turns six, and I celebrate the anniversary of becoming a mother.

Six years ago tonight, I had control of the TV remote, an ENORMOUS belly, high hopes, and a little trepidation. Some things have changed, and some have not. I wonder if you can guess which ones?

Six years ago tomorrow, I had a gorgeous, blue eyed, feisty, insatiable baby who wailed heartily most of his waking hours and stole my heart. Again, can you tell what has changed and what has not?

Happy Birthday, Rooster. Thank you for filling my life with gifts.

Sunday, May 16, 2010

Help a Friend

I got an email, friend-of-a-friend style, asking for my advice. I don't have the answers, but I know YOU might...

Can you help my new friend, whose girl has Moebius Syndrome?

"I wonder if you have run across anything regarding enteral nutrition. My daughter is tube fed on Pediasure and it's gluten free/lactose free, but I think it has casein.

I was also considering testing her for GI issues and didn't know where to start a discussion with a Dr about it.

Any advice you might have would be welcome."

Thursday, May 13, 2010


Every day, it comes to me unbidden - several times, every day.
A sentence.
I wake him up for school, I walk onto his campus at the end of the day, I check on him in his room when he's on a time out...and it comes to me...
"I want my boy."
I let it be spoken in the hospital when he's coming out of surgery, when I'm on my way back from a teaching conference out of town, when he's right there beside me but seems a million miles away, a lifetime away.
I reshape the words so his sister feels included, but to me the mantra's still the same when I tell her every day, "Let's go get our boy."
The wanting is there even without the word, there so strong each time I mentally see the sign for want; I imagine my two hands clutching empty air and pulling it toward myself, emphatically.
When he is out of my reach, beyond my circle, the mantra rises up like some inborn reflex, as primitive and essential as breath.
Every day, countless times. My Boy.
I can't always have him though, and sometimes even when I do the yearning goes on.
For me, this is what autism means right now.

Monday, May 10, 2010

Making a Wave When We Can

I have a Master's Degree, four teaching certifications, and a list of professional development courses and workshops that goes on for pages and pages. A voracious reader, I consider myself a lifelong learner.

Nothing has taught me more in my 38 years than the boy about to turn six and the girl who just celebrated her fourth birthday at Disney Land. Everything else I ever learned fit inside a water bottle. My children teach me as much as the Pacific Ocean they love so much. It is tumultuous learning, fraught with frustration, and I fail all the time.

But I am a teacher, and I preach the value of failure, the merit of "discovery learning." I yammer on to anyone who will listen that lessons that stick present challenges, that nothing valuable comes easy.

So I'm trying to learn in concert from my kids and myself. I'm trying to value process. I'm trying to keep growing, and to keep going.

My brain cells don't multiply like they used; these synapses slow down sometimes. I miss the plasticity of my college mind. But much more rides on my knowledge acquisition these days. I am no longer learning for the sake of my future, but for theirs.

And so I keep plugging away, doing my homework, listening, learning. Trying to keep my head above water.

Sunday, May 9, 2010

Random Thoughts

It used to be that Father's Day depressed me -- when I was a kid.
Now Mother's Day makes me melancholy.

Tomorrow is IEP day. Thus I spent a fortune at Target and have many new accordion files and organizers in my possession.

My son asked me to read him an abc book about heroes today. R was for Rain Man. After I finished I said I liked Upside Down Man the most because he was funny. He said, "I want to be Rain Man!" He said it about 10 times and I finally distracted him with another book.

Does anyone else describe their weekends as survival? My mom asked me what we did today. "Just tried to keep our heads down," is how I put it. It wasn't a bad day, not by our standards. We spent it trying to minimize meltdowns and make time pass.

I really want to be a better adjusted, more content person. If you have a reading list that might help, I'm ready for some homework.

The keyboard on our new netbook sucks. Or my hands are just huge.

That's all.

Thursday, May 6, 2010

Laying Down the Law

Sometimes I get fired up and a dash off upset letters to the president. Usually it's about education. Oddly, I have never written to him about autism. I thought about that today, and it turned into me dashing off this post. (I wish I had the time to research a more in-depth, journalistic piece. My To Do List cracks up at that mere thought.) Maybe you will consider writing a similar post, and link to it in the comments:

If I could talk to President Obama, Congress, or other influential leaders, what would I tell them about autism?

- Autism is not just one thing. It's not easy to define. To know one child with autism is to know one child with autism. You could have 20 autistic people in a room and they could have very little in common. Some would look you in the eye, some would carry on a conversation with you, some would hug you, some would have special talents, some would have very high IQs, some would spin or flap, some would have more than one diagnosis, and some would not -- but every single person in the room would have value, importance, significance and worth.
- Even the undisputed stats tell us autism in an increasing concern. It is time to make this a priority of our surgeon general and our Secretary of Health and Human Services. I see the military getting behind the cause of fighting obesity because they see the national importance. Well, obesity is a real concern. But it has taken us far too long to realize how important. Let's not be so slow to help families who deal with autism - who deal with inadequate resources, discrimination, health challenges, and economic struggles.
- Like obesity, autism becomes more expensive when ignored. It is not just right and ethical to provide support to children with autism, early intervention is actually quite cost effective. We need to act to ensure equal access to early intervention regardless of geography, ethnicity, class, or anything else.
- The education system, in vast need of reform, must differentiate for the diverse needs of all learners, but particularly kids on the autism spectrum. This requires differentiated instruction, adequate resources, and better trained educators. Public officials need to think about how we can make this happen, and how they can influence teacher preparation institutions to take on these challenges as well.
- Parents with kids on the spectrum face struggles financially and in maintaining their careers. Their circumstances vary as widely as the kinds of autism that exist. Some parents of kids with autism are blue collar and some are white collar, some are famous and some are very private, some are married while others are divorced, some are CEOs, some are teachers... Tax breaks could benefit many, and job flexibility could benefit many, but the important thing for our leadership to grasp is that by helping families cope with challenges brought by autism, those families have more to offer the country as well. Everyone benefits.
- Families with autism are vulnerable. Because autism has so many unknowns, there are those who would exploit parents to make a quick buck. How can Congress encourage innovation and supports for families but also act swiftly to put a stop to those whose snake oil would do financial or physical harm?o
- INCLUSION, INCLUSION, INCLUSION. There is no where, no reason, and no benefit in hiding away the ever growing population of children and adults with autism. Segregation benefits no one, and inclusion benefits everyone. We need to support the inclusion of kids on the spectrum in schools, clubs, teams, and we need to extend support beyond school age years. The children diagnosed every 20 minutes today are the adults, the VOTERS, of tomorrow. Some might still need supports into adulthood, but the more we help early, the better off they will be.
- Promote volunteerism. People who spend time helping those who have autism will learn, dispel myths and ignorance, build community, make a difference, and reap their own rewards. People with autism have a lot to give, too.

Tuesday, May 4, 2010

Grab Bag

People with inquiring minds have been asking: So what happened next at school? What about the bullying and teasing?

And I want to answer, because I so deeply appreciate the concern. Thank you for thinking of us. Only that part of my brain, that section of my voice, has gone AWOL. I would post about school, but I just can't yet.

Instead I bring you my first ever ADHD-style grab bag of thoughts I've wanted to share.

A little bit of Notable and Quotable

Peaches: Are TOES private parts?
Daddy: No, toes are not private parts.
Peaches: Well, then, WHY do I HAVE to wear closed-toe shoes to school?!!!!

Me: Rooster, did you have a good day?
Roo: YES! Just only one little time out.
Me: Why did you get the time out?
Roo: Because I told the teacher, "You can run, but you CAN'T HIDE!"

Next, an epiphany and a question:
Since my husband's grandmother recently passed away, a few people wanted to make donations to a cause in memory of her. His aunt asked, "What autism charity would be the best choice?" Amazingly, we don't know. We were stunned to realize we know very little about nonprofits that help families with autism. It made us wonder: Is there some amazing charity that helps kids with special needs get services? Preferably one that doesn't care about anything else but helping kids like ours experience things like classes, camps, horseback riding -- whatever makes kids happy while relieving parents a bit. (We would prefer an apolitical charity, as we at Casa del Rooster don't really have the oomph left over at the frazzled ends of days to contemplate any political matters beyond voting in elections.) If you know of an organization like that, let me know. If not, hey, let's start one!

Oh, my. Guess what we discovered? I feel like I just clawed my way to the best dress in Filene's (sp?) Basement or something. We found ZPizza. Not impressed yet? Listen to this: ZPizza is in our neighborhood. They sell organic pizza and related good stuff. They sell healthy salads. And. They. Sell. GFCFSF pizza made with daiyana cheese. And it does not cost a whole paycheck. And... are you sitting down? They deliver it. Wait: They are also VERY NICE and extremely considerate. My whole family can eat there happily after catching a movie next door, or call 'em up and tell 'em what to bring us. I'm thinking if we ever adopt a child or a puppy I will name it Z. I'm a little excited. I receive no kickbacks whatsoever, but I am telling you to find a ZPizza and eat there, pronto. See you there.

Saturday, May 1, 2010

Who Are They?

I am conscious of my sensitivity to words. I try to be mindful of it, and to realize that people, including myself, have slips of the tongue, moments of being inarticulate. I try to be less sensitive.

But I feel a little chafed lately by a four letter word.

We see a dentist who performs miracles with my son, because he loves his job, loves kids, and specializes in pediatric dentistry for children who have special needs. When his nurse accidentally gave the Roo a flouride treatment his chart said he should not have, the dentist blanched. Reading a scary look on his face, I asked why that was such a big problem. "Well," he said, "THEY, you know, with metals, THEY..." and he cocked his head toward my child. "We try not to give THEM those treatments because sometimes severly autistic kids..."

For some reason, I reassured him. I think I wanted him to simply stop talking. What was done was done. There was no point to saying my son is not "severly autistic" because I don't even really know what that means, and thanks to Christine I understand how objectionable and ambiguous terms like "high functioning" sound. I could not undo what the nurse had done, and I didn't really even know how a big a deal it was - I'd have to figure that out later - I just wanted the dentist to stop talking because his pronouns made me feel a little novicained and queasy.

I like our dentist, and I like the teachers at my son's school. I know they try hard to help my boy, and they value inclusion of all kinds of kids. But when Roo got hurt at school last week, a teacher called me very worried. "I think his nose is bleeding because he banged it, but since they don't feel pain like other people... I mean, I just don't know how badly he is hurt because I know they can't feel pain, and I just want to be sure he does not have a head injury."

At the phrase "head injury," I flew out of work to go to my boy, no time to explain that my son, and many kids with autism, feel pain, and made sure my boy's nosebleed was just a nosebleed. It was. I found him weeping, because it hurt. I wanted to cry too -- the "theys" were getting to me.

They say April is the cruellest month, and I have to say our April of dentists, dramas, disasters, bullies and booboos lived up to that. On the one hand, I was probably too sensitive amid the chaos. On the other hand, April was autism awareness month, and I'm not sure I was as good of an advocate as I should have been. Next time, I want to do better. Next time, I hope to embrace the teachable moments better, not let the "theys" slide.

Is it me, or sometimes is "they" is a four letter word that hurts?