September 26, 2011
This is a post in two parts.
Part One: September 25, 2011
Watch out. I’m going to whine.
Today was the 12th Annual Flutie Foundation 5K. It’s a race I ran last year. My first 5K ever.
It was also the last time my running shoes were on my feet.
I have a lot of friends who ran today. Friends I ran with last year and some friends running it for the first time today. When they signed up for the race, my name was included on the e-mails about registration, carpooling, etc.
Each time I wrote back that I wouldn’t be there.
My friends were awesome, even threatening to kidnap me out of the house and train with me. I laughed, knowing that they were only partly kidding. I want to, I’d say, but I just can’t.
I had a million excuses. It was too hot or too cold. I had no childcare. I had no sleep.
Truth is, I just couldn’t get myself out of the house. I was stuck. Paralyzed again by everything that had happened this year. Strapping on my running shoes just didn’t seem like the answer. I was just too tired.
I struggled with this every time they would run by the house or saw their daily run times posts on Facebook. These were autism moms too. How are they not tired like me? What is getting them up and out to run when it’s all I can do to just get up and out of bed?
As the race date got closer and closer, I got more and more depressed. Here was a foundation I believed in – an organization founded by Doug Flutie in honor of his son – doing amazing work in our community. They give out grants to school districts and organizations to help kids just like mine. I had even planned to approach our school to help apply for one of those grants to get a social skills group in our community.
I couldn’t even find time to work on that grant. I couldn’t find the time to do anything this year.
Running that race last October was the last thing I remember doing just for me. It was my accomplishment and mine alone. I trained for that run alone. My kids were proud of me, and still talk about it. Like “Remember when Mom ran that race and didn’t win? She still got a T-shirt!” It was my Hopeful Parents post for October 2010.
What have I done since then? For me?
Yes, I know I have been taking care of three amazing children, each with their own demands on my time. Since that race, we received one more autism spectrum disorder diagnosis, transitioned one kid to kindergarten, and discovered new anxieties and worries in our fourth grader. I’ve walked the dog several hundred times, cleaned up the same Hot Wheels cars a thousand times, and stared at piles of laundry for days.
But the only accomplishment that I can point to that was just for me was completing all the levels on Angry Birds. And even that, Tim helped me.
Seeing the race photos today from my friends hit me harder than I thought it would. On each of them I wrote: YAY! Good for you! and So sad I wasn’t there with you today.
I need to get back the “something just for me”. It may not be running at this point. But it has to be something. This “nothing”…just isn’t working.
Part Two: September 26, 2011
I put two kids on their buses. Took one kid to preschool.
I went to the closet and pulled out my running shoes, grabbed my iPod and headphones, and headed out the door.
The air was thick with heat and humidity already. I clicked through to my running playlist.
The opening notes to “Hannah Jane” by Hootie and the Blowfish filled my ears. And off I went.
A jog. A slow slow jog. Down the sidewalk, avoiding the cracks and the acorns and the fallen branches. Behind me, toilets that needed to be cleaned, a floor that hasn’t been washed in weeks, and dishes that needed to be put away.
In front of me, nothing.
I was alone, just me and my music. Together again for the first time in a year.
It’s not the solution to my problems. But it’s a start.
If you’ll excuse me, I have sore feet to soak. And a bruised self-esteem to fix.
Click HERE to learn more about the Doug Flutie, Jr. Foundation for Autism and all the great work they do. They are involved in this cool project called “Hacking Autism“, working together with Autism Speaks and Hewlett-Packard to create new apps for people living with autism. You can send in your ideas for apps right to them.
And definitely click HERE for the most amazing video made by my incredible friend. She’s running in the NYC marathon this November in honor of her kids, my kids, and the thousands of other people with autism spectrum disorder. You may recognize a few incredible cute faces in the video. She is a true inspiration to me and someday I hope to be like her.
“Ain’t nothin’ gonna break my stride
Nobody’s gonna slow me down, oh-no
I got to keep on moving
Ain’t nothin’ gonna break my stride
I’m running and I won’t touch ground
Oh-no, I got to keep on moving” – Break My Stride by Matthew Wilder
September 20, 2011
I am SO excited to announce that I’m in a book!
The Wit and Wisdom of Special Needs Bloggers is out today! It is edited by the amazing Lynn of Autism Army Mom, and it stems from a project that she put together with Big Daddy Autism. Many of my favorite special needs bloggers have brand new essays in this book. It’s available today from amazon.com. You’ll laugh, you’ll cry, but most of all you’ll come away with a better understanding of what goes on behind the closed doors of a special needs home. Click on the photo below to go right to the amazon page, and I’ll also have a link to the book on my home page.
A HUGE thank you to Lynn for including me in this awesome project.
If you’re a blogger and you have your story in this book, please leave your blog address in the comments so we can all find you!
As I have mentioned before, in addition to this amazing book, I am lucky enough to have an essay in the incredible “Sensational Journeys“, edited by Hartley Steiner. I now have a permanent link to that book on my home page as well. There are 48 personal stories of living with sensory processing disorder, and I am so happy to be a part of that project as well.
September 19, 2011
I found my place yesterday.
For a long time I’ve been searching for that one special place. Somewhere where my kids could just “be”. No judging eyes. No sideways stares. They could run and play and laugh and spin and be themselves without any worry or thought about who was around them.
We found that yesterday at Colt State Park in Bristol, RI.
We were there for the Southern New England Walk for Autism Speaks. Our team of 22 – 13 adults and 9 kids – came together for a cause: to raise money to support research and awareness for people living with autism spectrum disorder.
What we came away with was so much more.
The one mile loop took us through this magnificent park on a trail that started in a forest and ended along the ocean. We walked at first as one big group, taking pictures and remarking on the beauty of the day.
We chased after each other’s kids and held their hands along the ocean rocks. The kids ran and then stopped to pick up seashells. Our kids could walk beside us. Hand in hand if they wanted. Or not.
hand in hand - no complaints!
We stopped when our kids wanted to stop. We did what they wanted to do. We were on no one else’s time schedule but our own.
At the halfway point, we were cheered on by some local high school boys. They gave our kids high fives, handed them each a lei, and told them they were doing a great job.
Our kids high-fived them back, accepted their new treasure, and ran on. Free.
It was at that moment that I knew I’d found it.
This was the place.
No judgement, no worries. Safe and secure but free to be themselves. Jumping, stimming, yelling, running, dancing, spinning, signing, scripting…laughing. Siblings, parents, uncles, cousins, and friends – all together in one big group watching out for each other. Having fun.
Dancing to the band
quiet sibling times
so much room to run and play
Just being ourselves.
For me, it quickly became one of the best days I’ve ever had.
We arrived separately :
my friend who came with her two boys just because she cares,
my uncle and cousins and their daughter who where there to support us,
my mother who would do anything for her grandsons,
my friend (my son’s former teacher) who understands our kids better than any person I have ever met, and
my three autism mom friends and their boys …who spent the whole day smiling…
Our team of 22 became a family of one.
The day was no longer about the disorder that can pull our families apart. This day was about hope, friendship, and creating a family that supports each other no matter what.
I walked that day wearing a pin given to me by one amazing friend. It was from the Brady Rymer Band. It said “Love Me For Who I Am“.
In this place, our kids – ALL of them – were loved for who they were.
love me for who I am
That gives me a new spring in my step.
I've Got A New Way To Walk
Already planning for next year.
“It’s a little bit of strut and a lot of smooth
And a little bit of bouncing fine
My chin is up, my feet don’t stall
When I walk my walk, I walk real tall
I got a new way to walk
I got a new way to walk
I got a new way to walk
And it shows how good I feel ” – I’ve Got A New Way to Walk from Sesame Street (performed by Destiny’s Child)
September 17, 2011
“I’m good enough, smart enough, and dog-gone it, people like me.” -Stuart Smalley, character from Saturday Night Live.
I’m at Hopeful Parents today, because for one night last week I finally felt “good enough”.
Click HERE for Good Enough at Hopeful Parents
and to read why I’m walking tomorrow for Autism Speaks, click HERE
September 15, 2011
At daycare, he was the one I brought in clinging to my leg. The one crying, asking me not to leave. The one the teachers said would stand outside the circle of kids, watching, until he was ready to join in.
In preschool, he stayed next to me and the other parents while his classmates ran around on the grass, chasing each other before school started. Eventually, he’d join in, but stopped immediately when the teacher came to the door, calling the kids inside. He was also the one reading the books aloud with the teacher at circle time. The one who brought in a globe for show-and-tell.
In kindergarten, he was the one who cried when he was the last one to complete a paper because he had to get it just right. He was terrified of raising his hand for fear of giving the wrong answer. But he was also the one who gave the right answer all the time. The one who had the glowing report card from the start. The model of good behavior for the other kids.
In first and second grade, he was the one who wowed his teacher with his knowledge. He read every book she offered to him, and encouraged his love of history and science. He mastered every subject with ease. But he was also the one who obsessed on his handwriting and not the content of his work. The one who played with a friend or two at recess but didn’t join in the group. The one who needed his dad to coach his baseball team to build his confidence.
In third grade, he was the one who was happy about the extra work sent home from the teacher. He did math puzzles and read extra pages at night and wrote about them in his journal. He was the one who taught the other kids how to make origami Yodas during inside recess. But he was also the one who had an anxiety attack about the school’s standardized assessment tests, to the point where he needed to meet with the guidance counselor. He obsessed over not getting every answer right. And he was also the one with a just few very good friends. The one invited to only a few birthday parties.
He’s shy. Brilliant. Quiet. Sensitive. An old soul. The kid every parent wants their kids to be friends with.
We are now here in fourth grade. Things are a little different.
Last night before bed, Gerry told me he couldn’t go to school. I have a stomach ache, he said, and my leg hurts.
Having been there before, I asked him what was really going on. Every night since school finally started, there has been something new keeping him awake. Up four times a night. Hot and cold. Worried about this and that. Confidence in the toilet. Unsettled. Unable to complete his homework or piano assignments unless either Tim or I are in the room with him.
I’m bored in school, he said.
I pressed him further, knowing this was far from the truth.
Sigh. I can’t focus, okay? I sit there. I want to pay attention but I can’t. I start to daydream and I’m thinking about the Star Wars Clone Wars website, and then about Open House night and then picture day. I go deaf. I don’t hear the other kids around me anymore. When I come back, I’ve missed the whole math lesson. I can’t tune in to anything around me. I have a very full life and my brain can’t shut it off to concentrate on magic math squares.
And up go my red flags.
I know the kid has a lot on his plate. To say things around here are anything but stressful would be a lie. Back to school has been a challenge for us all. His brother is in his school for the first time. Rides in on a different bus. Runs in different circles – literally. Our house has become a revolving door of therapists for both his brothers.
His anxiety about everything is not new. If I can be honest, he’s a lot like me there.
But the focus thing is completely new. This is the first time he’s expected to really pay attention in class. There’s no hand holding anymore.
I had a brief conversation with a neighbor about it this morning. Her middle son started having his attention issues in fourth grade as well. He was so smart, she said, that he had been able to get by on his intellect up to that point. But fourth grade, everything changed. Add in hormones and friend issues…these kids have a lot going on. We’ve started now with anger management problems too. He thinks that his youngest brother gets everything and he gets nothing.
Yes, my neighbor’s youngest son is on the autism spectrum. Just like in our house.
I don’t know where this will all go for Gerry, but I know that I owe it to him to find out. He needs a safe space to go to get it all out. To figure out what is real and what is perceived worry. To get his focus issues under control before they throw us all out of control.
My friend wrote about worry in her post over at Diary of A Mom. It hit home. Hard.
So today we have an appointment with our pediatrician to get things started. And tonight’s at his school’s Open House, I’ll feel out the teacher to see how she can help in the classroom. Immediately.
I worry about all my kids, but Gerry… I need to take his troubles away. To get that shy, brilliant, amazing kid back out.
I’ll help you figure this out, I told him last night. Don’t worry.
I love you, Mom. Thank you.
Even though he's not a little kid anymore, I can still try to take away his tears (picture from December 2004)
“Let me have a look inside these eyes while I’m learning.
Please don’t hide them just because of tears.
Let me send you off to sleep with a “There, there, now stop your turning and tossing.”
Let me know where the hurt is and how to heal.
Spare me? Don’t spare me anything troubling.
Trouble me, disturb me with all your cares and you worries.
Speak to me and let our words build a shelter from the storm.
Lastly, let me know what I can mend.
There’s more, honestly, than my sweet friend, you can see.
Trust is what I’m offering if you trouble me.” – Trouble Me by 10000 Maniacs
September 10, 2011
Really? I should know better by now.
Yesterday at school, Howie fell down at recess and tore up his knee. According to the school nurse (and his aide who carried him off the playground, to the nurse’s office, to lunch and back to the nurse), it was bleeding pretty heavily, and understandably Howie was very upset. Every time they tried to come near him, he let out blood curdling screams (no pun intended). I picked him up just before noon and brought him home. To scream here.
Thanks to some incredible TLC from Tim, we were able to remove the band-aid to determine that it didn’t need stitches. Tim wrapped it up with gauze and tape to make a better feeling – and less sticky – bandage to protect it. Howie called it his “cast”.
He seemed in good spirits this morning, so we continued with our plans to attend our town’s “Day in the Park” celebration. It’s an annual event in our town park with music, food, games, crafts and lots of activities for the kids. This year, our town was having a birthday parade as well.
And again I say to myself: Really? I should know better by now.
The five of us trooped to the park and within minutes I realized I’d made a mistake. Three bounce houses. A playground full of kids. All things that Howie couldn’t do with his bad knee.
Cue meltdown in 3…2…1…
The first one came as we walked past the bounce house. We’d managed to do one quick tractor ride and a game before we walked by it.
The explanation of “you could hurt your knee again” was met with “but it doesn’t hurt now.” Howie just does not get the cause and effect relationship, especially when it comes to pain. If it is not happening in the moment, it can’t happen. It just doesn’t compute to him. I led him away as he was shrieking and hitting me.
The only way we moved on was by me telling him that if a kid fell on him in the bounce house, he could start bleeding again like at recess. I basically scared the crap out of him.
I tried to redirect him to activities we could do. When we stopped to talk with one of his new kindergarten aides, he spied the playground.
I let him go on some of the equipment, but tried to keep him off anything he had to climb or run on. You know, about 90% of the things there. Once I saw him attempt the rope ladder and shimmy his way across the platform to the monkey bars, I knew he had to come down or risk more injuries.
Cue meltdown #2 in 3…2…1.
With him yelling and kicking and jumping, we made our way over to a shady tree so we could watch the parade. He couldn’t sit, he wouldn’t stand, he wouldn’t leave.
The parade came in three waves down the street, starting with the fire trucks and police motorcycles. Howie couldn’t understand why some kids were in the fire trucks and he couldn’t.
I was trying to talk to the mom of one of Gerry’s best friends. Howie head-butted me in the stomach.
Then the marching band came and he was upset that there was no tuba.
Howie whined that he was thirsty and wanted juice. I offered lemonade. He didn’t like the smell. I started to talk to one of Howie’s former teachers. He turned around and tried to poke me in the eye.
Finally, the Boy Scouts and Girl Scouts came by. When he recognized some kids from his school walking by, he asked why he couldn’t march as well. When I explained that the scouts were part of the parade, he completely fell apart.
Punching me. Kicking me.
Gerry went off with his friend. I turned to Tim and said we had to go.
I carried Howie from the shady tree around the park and back to the car. I’m sure half the town heard him scream “I HATE YOU MOM!” while he hit me on the shoulders. If the Beatles revival band hadn’t been singing “She Loves You Yeah Yeah Yeah” at the time, every eye in the park would have been on us.
Thing is, I’m sure he just looked like a spoiled kid who was mad that we were leaving the park before he was ready.
I knew he was in full sensory meltdown mode. There was no punishment necessary. His body was punishing him enough.
Once we were home, in the comfort of his green chair, with juice and “Rio” on the TV, he was calm. He sat sideways on the chair with his leg up. He asked for more juice about 4 times. And about 30 hugs.
He’s resting comfortably now.
Again, I ask myself : really? I should know better by now. I forget sometimes because we have come so far. The things – like Day in the Park – that we used to avoid, we can do now.
But not today.
If I could, I’d rewrite today’s plan. I would have sent just Gerry to the park with Tim or maybe called a friend. I would have stayed home with Howie or gone for a ride to a place where he didn’t have to use his leg. I would have ignored the voice in my head saying “everyone in town will be there, we can’t miss it” and gone with “it’s just not right for us today.”
But I can’t go change it.
Instead, I’ll go with next time I’ll know better.
“Yeah I’m workin’ on my rewrite, all right
Gonna change my ending
Throw away the title
Toss it in the trash
Every minute after midnight
All the Time I’m spending
Is just for workin’on my rewrite.
Gonna turn it into cash ” – Rewrite by Paul Simon
September 7, 2011
Within minutes of each other, I had a kindergartener and a fourth grader whisked off to school. And one screaming two year old at the window, desperate to go with them. – My personal Facebook page status today
I put my son on the van this morning at 7:35am for his very first day of kindergarten.
We took the obligatory pictures in the rain to document this momentous occasion.
I went back inside to post them on Facebook, like everyone else was doing.
And I couldn’t do it.
My son’s first day didn’t look like the other kids’ first day. There was no walk over to the big yellow school bus, no wave from the window as he drove away.
We were on the van.
Last year, I wrote a post for Hopeful Parents called “The Wheels on the Bus“. It was my first post about my public acceptance of my son’s diagnosis. I said “I’ve grown comfortable sharing our story in town and now I am happy to have The Van pull into my driveway. Just like every other new specialized service we’ve added to my son’s routine, it has only made life better for him and for all of us.”
And all of that is still true. But today, I felt a little sad.
Years ago, before everything, I promised Howie that he could ride the big yellow bus like his brother. As time went on, it became clear that he just couldn’t do it. The sounds, the smells, the noises and the long ride to and from school would just be too much for my little guy. Putting him on the bus would be setting him up for failure immediately.
So we’re on the van.
I put the memory card away with all the pictures, and focused on having my alone time with Lewis. As he and I vacuumed together, I had a 180 degree turn.
I’m proud of those photos. And I have to post them.
He’s on the van with his friends and a driver who loves him. He’s traveling to school in the way that is not only appropriate for him, but perfect for him. He’s greeted by his aide when he arrives at school, and sent on his way home the same way. He is taken care of every step of the way from the moment he steps into that building until he walks in our house. We have worked incredibly hard to get to this point, and I’m not going to let some silly notion of what things are “supposed to be” stand in our way of celebrating this day.
This is our normal. I have one son on the bus and one on the van. Our first day pictures may look different, but it doesn’t make them any less amazing and important.
So here, for the first time, is my son going to kindergarten.
I am so proud of him.
“The wheels on the bus go ’round and ’round
’round and ’round
’round and ’round.
The wheels on the bus go ’round and ’round
All through the town.” – The Wheels on the Bus (children’s song)
September 6, 2011
(the following is an edited version of a photo book that I put together for my son’s preschool teachers. it was my way of thanking them for everything they did for us since we walked through those doors. here’s the story…)
I started at my preschool in March 2009 when I was three years old. When I walked through those doors for the first time, I was a little boy.
This is my story.
When I started at school, I looked like this:
and now I look like this:
When I started, being in the classroom was very hard for me.
But I learned to use my ready body
and do my work nicely.
At first, I had a hard time using a pencil and crayon to write and draw.
My teachers taught me how to “pinch and pull back”. I can write and color perfectly
It was hard for me to figure out how to join in with other kids.
But now I can spend more time working with my friends in the classroom.
Controlling my emotions was very hard.
But now I can have fun at the playground and meet up with my friends there.
My teachers helped me every day. They taught me how to use my brave words and how to solve my problems myself.
My teachers held my hand so I would not fall. They taught me how to try new things. They loved me for me.
When I started at preschool, I was a little boy.
But I have grown so much.
I have learned so much.
I’m now a big kid.
My tool box is filling up every day.
Thank you to all of my teachers.
Because now I’m ready for…
My little guy starts his first day of kindergarten tomorrow. The teachers are ready. He is ready.
And I’m finally ready too.
“Keep movin’ on, keep movin’ on
life is this way
Keep movin’ on, keep movin’ on
everyday” – Keep Movin’ On by Sam Cooke
September 2, 2011
This week has been…hard. Very very hard.
My kids were supposed to start school this past Tuesday. But Hurricane Irene left her mark here, knocking out power to most of my town and dropping trees and power lines across roads and bridges. The buses simply could not get through, and so school was canceled on Tuesday. And Wednesday. And Thursday.
Each day we shuffled around our planned “getting ready for the first day of school” activities, and each afternoon the call came in that school was put off for another day.
I hit the parenting wall. Hard.
My kids were becoming difficult. Lewis had become quite aggressive and impossible to manage around his brothers. Howie’s stimming and crashing and smashing was hitting intolerable levels. Gerry was at the end of his rope with his brothers. And no amount of extra beach trips and surprise playdates made any of it easier or better.
I was done. I had lost control of everything in the house. I had lost control of my ability to function.
Enter in my lifelines. My autism mom friends.
I’m lucky enough to have met some incredible women over these past few years. Some of them I’ve met through my son’s school, some I’ve met through reading their blogs. Some I just know through Facebook and Twitter. Each and every one of them is just…
Beyond nice. Instantly supportive. Every visit and conversation is easy. Like we’ve been friends for years.
I know how cliche it sounds. But it is so very true.
They just “get it” without explanation or judgement. I don’t have to pretend to be some strong “I-can-handle-anything” mother with them.
I can send an e-mail saying “I’m losing it. Sitting at my desk trying not to cry.” They don’t think I’m on the verge of a nervous breakdown. They say “That was me last week.”
I can write that “the hurricane is wreaking havoc on all three of my kids and I don’t know what to do.” They don’t wonder why the weather is affecting my children. They say “it’s happening in my house too.”
I can send an instant message that “I’m struggling. Losing myself and my family in the process.” They don’t question my parenting ability. They offer to babysit, tell me to set up a date night and help me feel human again. And when I tell them how bad it really is, they say “I can handle it. You need the break.”
I can ask for their support and strength as “I’m trying not to cancel our babysitter for the night because my kids are so volatile I’m afraid of putting our friend in the position of policing them all night.” They don’t even ask what is going on with my kids. They tell me “You need this night out. Get out of your house or I will kick your a**.”
And I can post on my Facebook page that I’m looking for ideas to entertain my kids now that we’re delayed for a week, and a mom invites me to their swim club. To get out for the day. Without ever having met me or my children before.
They were the ones to lift me up and pull me out of the rabbit hole.
Without these women, I wouldn’t be the advocate that I am today for my children – all three of them. Without them, I wouldn’t be the parent that I am today.
Without them, I’m not even sure I would have made it out of bed this week.
They not only get my kids, but they “get” me.
A while ago, my friend Jess wrote a post called “Autism Street” about how different autism can be from one house to another. She reminded us that what happens behind the closed doors in my house on autism street is very different than what is behind my neighbors’ closed doors. And with that, we need to support each other no matter what.
It’s a phrase I’ve used often since in an attempt to describe an “in real life” version of this virtual autism community. Online, we are instantly there for one another without judgement or qualification. My parenting struggles in my house are just as valid as the parenting struggles faced by another. Our children are all different and on different “places” on the spectrum, but as a group we celebrate our huge successes and cry at the bittersweet.
We are in this together.
In real life, I can imagine this “place” where we watch each other’s kids with no questions asked. A park where our kids could roam free and be free without the “look”. A gazebo where the siblings could hang together, swapping tunes on their iPods and gaining strength from each other. A place where the virtual “hugs” could become real and the doors are always open. A welcoming village for anyone who “gets” our kids – autism parent or not.
A bridge over that troubled water for us all.
This week will be better for my house on autism street. It has to be. Then it will be my turn to open my doors for my neighbors, to give back what they have given to me.
“When you’re weary
When tears are in your eyes
I will dry them all
I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down” – Bridge Over Troubled Water by Paul Simon
As hard hit as my town was by Hurricane Irene, it does not compare to the devastation that occurred in my home state of Vermont. Please click HERE to donate to the Vermont Food Bank’s disaster relief and help those in need.