June 29, 2011
It’s my son’s “Happy Place”.
For the past seven years in June we’ve been taking the kids to Story Land amusement park in Glen, New Hampshire. Our first year was with just one kid. Now we’re a loud and rowdy family of five.
Story Land has become Howie’s place. Something clicked with him and this park when he was two. Before I even knew what a stim was, he would sit hunched over the map on our floor, rocking back and forth. He knew where every ride was, where the eating places were, and where the exit was (“X marks the spot”). He would talk about it constantly. And those nights before we discovered melatonin – when Howie would take hours to fall asleep and wake up at 2am screaming – Tim would take out his phone and scroll through the pictures of our previous trip. “See, that’s you on the flying shoes! And that’s you and Mom on the train. Look, that’s you driving a car.” Quietly and slowly, Howie would fall back to sleep again.
Every day he asks how many more “sleeps” until Story Land. And when I say every day, I mean every day. Three hundred and sixty days a year for the past three years. I’m subtracting out the days that we’re actually at the park. In the winter he asks how long before the snow melts and Story Land is open. In the spring he asks how long before the workers open up the park. In the summer he asks to show him on the calendar the number of the day that we’re going. And when we return, he asks when we’re going back.
Our trip up there was last week. Maybe it’s because I’m starting to understand him better, but I finally could see what he sees.
I saw a place where all three of my kids could ride on every ride.
I saw a place where stories come to life – not in a scary way with lots of people in costumes (because we don’t do people in costumes) – but in a nice gentle approach-if-you-want kind of way.
I saw a place where the kids didn’t have to hold my hand, but they could hold each other’s hands.
I saw a place where kids could drive their parents around in cars.
I saw a place that had food that was safe to eat, because they publish all of their food’s ingredients online so we knew what we could buy.
I saw a place where all three of my boys were happy. No fighting. No complaining about stimming or verbal outbursts. Happy. All at the same time. For three days straight.
I took a moment to look through the eyes of my five year old. What I saw was magic.
You can have Disney. We’ll take Story Land.
Three hundred and fifty five days until we go back.
"The sun will always shine where you stand
Depending in which land
You may find yourself.
Now you have my blessing, go your way.
Happiness runs in a circular motion
Thought is like a little boat upon the sea.
Everybody is a part of everything anyway,
You can have everything if you let yourself be.
Happiness runs, happiness runs.
Happiness runs, happiness runs." - Happiness Runs by Donovan
June 24, 2011
So, how much sharing is too much?
It’s Wednesday morning, and my family was in the lobby of our hotel. We’re on our annual trek to our favorite place on Earth: Storyland in New Hampshire. We’ve come down for the hotel’s free breakfast, and we’re crowded around the tiny table.
Well, not all of us. I had removed Howie from the sitting area because his behavior was becoming quite disruptive. I plopped him down in the chair in front of the reservation desk, handed him a Storyland map, and told him to plan out our day. I strategically placed myself halfway between him and our table, so I could keep an eye on everyone. And suck down my free coffee at the same time.
At that moment, a mom and her son came in. He looked to be about seven years old or so. She asked if I was waiting for a table, and as I gestured to my left and right I explained that I was keeping track of my crew. She smiled and grabbed a table in the middle of the room. Her husband and daughter came in behind them.
A few minutes later, I heard her tell her son to “just go out and ask them what they like about Storyland. He has a map right there.” Her son comes right out, glances back at his mom, and turns to Howie.
“So, what do you like about Storyland?”
Howie’s eyes lit up. It was like asking Dino Dan what he likes about dinosaurs.
(in case you don’t know, Storyland is Howie’s second obsession after Hot Wheels cars. He asks almost every day “how many more sleeps” until we’re going. And on the days when he doesn’t ask, he talks about his favorite rides. Constantly.)
For a good ten minutes the conversation flowed. “I like the polar coaster!” “I’m going on the Flying Fish!” “Do you like the train?” “I’m going to ride on the green one!” “Did you know there’s a circus”…and on and on and on…until:
“Mom! I made a new friend!”
Of course, he didn’t know the kid’s name or anything about him. They just connected on Storyland and that was enough. Frankly I was surprised he didn’t say “I made a new best friend!”
The rest of us finished our breakfast and headed back up to the room to get ready for our big day at the park. Our new friend Gabe (yes, we now knew his name) and his dad rode up with us. And they were still talking about Storyland.
We said our goodbyes at the elevator and the perfunctory “see you at the park”, gathered our things and went our separate ways.
In the parking lot, I realized I had forgotten something in the room. I headed back to the lobby, and ran into Gabe’s dad outside of the door.
Something overtook me at that moment. I don’t know what it was. For some reason, I was compelled to talk to him. To thank him. So I did.
“I just have to thank you and your son. He’s a great kid and my boys had a nice time talking with him about the park. My five year old…um…he has high functioning autism, and it’s hard for him to relate to kids sometimes, so…um…that was really great for me and him. Thank you.” And I turned and walked into the hotel. His wife was walking out right then. She looked at me quizzically and said “I guess I’ll have him fill me in.”
I have never shared that information with a stranger. A complete and total stranger. There was no immediate reason for me to tell them any of that. The only time I’ve ever told anyone about Howie’s autism was as an explanation for his behavior. And it’s only to a person who we already know. I’ve never considered it anyone’s business before. And clearly, they didn’t need to know it. They came into breakfast five minutes past the verbal outbursts, the refusal to eat, and the inability to sit still. All they saw was a perfectly behaved five year old, talking about his favorite vacation spot.
But I saw something different. I saw my son connect with another young boy – one that he had never met before.
A boy that seemed a little like…mine.
What was it that got my radar up? Was it the excited way that he talked too? Or was it the fact that his mother asked me twice if he was bothering my boys? Or was it the little tears that welled up in her eyes when I told her that Howie said that he made a new friend?
Something compelled me to tell that family our story. It was the thought that maybe we shared something else besides our love for the Whirling Whale ride.
We saw the family two times at the park that day. Once they were getting off one ride, and we were getting on. There was a quick hello, and that was it. Later on, I saw the mom. She was walking alone, talking on the phone. She glanced at me, and looked away.
I’m guessing now that my radar was off that day. I was wrong. And I scared her.
I expected a teary “yes, us too!”. What I got was a “I don’t know you.”
I spent the rest of the day thinking about this encounter. What did I expect to gain from sharing, or in this case, oversharing? Why did I need them to know? Why did I need to connect with this family? They were strangers then and are strangers now.
Why did I need to make my son the topic of her next mom’s night out?
I guess it’s that feeling of not wanting to be alone. I thought she’d be a mom who “gets it”. Instead, she was a mom who didn’t want to understand.
I’m not sure I’d do anything different any other time.
You just never know when you’ll get that teary “yes, us too.”
That moment can make all the difference.
Let's get together at Storyland
(more about our actual visit to Storyland in my next post. As soon as I finish unpacking…could be weeks…)
“And the trouble I find is that the trouble finds me
It’s a part of my mind it begins with a dream
And a feeling I get when I look and I see
That this world is a puzzle, I’ll find all of the pieces
And put it all together, and then I’ll rearrange it
I’ll follow it forever
Always be as strange as it seems
Nobody ever told me not to try” – Talk of the Town by Jack Johnson
June 19, 2011
Sometimes, words do speak louder than actions.
Last month, my husband was away on his annual business trip. I know that we’re lucky that he doesn’t travel that often, but when he does, it takes its toll quickly. On me and the boys.
It was Tuesday evening – the third night into his trip. It had been a long difficult day up to this point. I was clearly at the end of my rope with the boys, and them with me. The “good night” phone call was hastily arranged across two time zones, with an attempt to fit it in between bedtime for the kids and dinner time for Tim.
Howie got on the phone first and I put it on speakerphone. His ability to communicate on the phone is a relatively new phenomenon, but he was excited to talk to Daddy that night.
They chatted a bit about Howie’s day at school (a tough one) and then the conversation turned to Hot Wheels, or more specifically, my inability to create a decent Hot Wheels track.
“Dad!”, he said with pain in his voice. “Dad! When are you coming home? I just really really miss you!”
My eyes welled up with tears. There was a brief silence on the other end of the phone. Across 2000 miles, Tim and I were processing the same thing at the same time. This was the first unprompted expression of affection for his dad. Ever.
I’m the one who is usually on the receiving end of what’s perceived as affection : the hugs, the desperate searches through the house when I’m in the shower, the person he demands in the middle of the night.
But his dad is the one who connects with him on the “important” things. The one who lets him help fix the broken shower pipe and takes him on a tour of the basement to follow the path of the water. The one who hands him the screwdriver as they replace the burnt out bulb in the brake light of my van. The one who works with him to create the most elaborate and most awesome of Hot Wheels tracks.
But until this point, he had never been able to verbalize it.
Tim and I talked about it later that night. We were both still a little shell shocked.
“I guess absence makes the heart grow fonder?” Tim said.
Something like that.
They say that women tend to marry their fathers. On paper, it would look like the complete opposite for me. However, I married a man who puts his family first above all else. A guy who understands what it means to be a dad, whether it’s playing ball in the yard or reading a bedtime story or…crawling around on the floor racing Hot Wheels cars. That was my dad too. Exactly.
Happy Father’s Day to my amazing husband and to all the fathers out there who go above and beyond for their kids.
Happy Father’s Day to the fathers-to-be…and the fathers-that-should-be. You deserve to feel the joy of watching your children grow before your eyes.
And Happy Father’s Day to my dad, who I miss more with every passing day. Absence really does make the heart grow fonder.
“I learned from you that I do not crumble
I learned that strength is somethin’ you choose
All of the reasons to keep on believin’
There’s no question, that’s a lesson, I learned from you
I do not crumble
I learned that strength is somethin’ you choose
All of the reasons to keep on believin’
There’s no question, that’s a lesson, I learned from you
I learned from you.” – I Learned From You by Miley Cyrus
June 17, 2011
It’s not you, it’s me.
I’m at Hopeful Parents today. Sort of.
You're So Vain
Click HERE for You’re So Vain at Hopeful Parents
(and while you’re there, click around. There’s some great posts by some amazing special needs parents)
June 14, 2011
If life had a “rewind” button, I would have used it today.
The day started out as an exercise in logistics. Gerry woke up with ear pain, which I knew was serious considering his class was going bowling this morning. Somehow I needed to get him to the doctor after driving Howie to school and before Lewis’ speech therapy appointment at the house. Already late for preschool, I was on the phone with the doctor’s office while simultaneously trying to get out the door with three non-compliant boys. And my car keys? Nowhere to be found.
Yes, for the second time in 48 hours, I had misplaced them. Completely.
I found my spare keys by some miracle and pushed the kids out the door. We had to be on time. Howie’s class was going up to kindergarten for the last visit, and he was taking the big yellow bus. Since he won’t be taking it in the fall, we didn’t want to miss this.
I quickly dropped Howie off and flew to the doctor’s office. An hour later, we were out the door with “it’s just a virus” and made our way back home with 30 minutes to spare before Lewis’ speech therapist arrived. Just enough time for a snack and a very quick house cleaning. By that I mean I picked up all the Hot Wheels track in the living room so they had a place to sit. I do not mean that I cleaned up anything else.
About 30 minutes in to the speech session, the phone rings. It’s preschool. My heart jumps into my throat.
It’s Howie’s teacher. They’re just back from their kindergarten visit and she wanted to fill me in. For this visit, they purposely went when the cafeteria would be busy…and smelly. They wanted Howie (and the other kids) to experience this first hand to see how they would react.
Apparently Howie reacted by stopping in his tracks halfway down the hall, and covered his nose. For the whole hour. The smell of bacon and french toast cooking hit him hard.
This wouldn’t be such a big deal if, of course, his new kindergarten classroom wasn’t directly across from the cafeteria. This smell aversion will be a daily occurrence once school starts in the fall.
On the phone, we immediately brainstormed some plans of action. Social stories about smells. A “smell desensitization” program starting this summer at home, with us cooking different foods. Buying stock in Yankee Candle.
I hung up the phone and my wheels were spinning. Just like any autism parent, my brain immediately went into fix it mode. I sent out e-mails asking for advice from my fellow autism moms. I was on it 100%.
Then, from the other room…
“Alysia, do you have a minute for a question?”
It’s Lewis’ speech/language pathologist. Who I adore. And this sounded bad.
“How do I ask you this without stressing you out?”
“How long do you think it would take you to get a full developmental evaluation set up for Lewis?”
What? You mean like the one I canceled back in March because I thought everything was fine? Say that again?
“I’m seeing things that worry me. More, I’m NOT seeing things. Have you noticed that when he plays he gets fixated on one thing? I kept trying to move on from the fruit but he won’t change gears. And he’s only imitating me with play, he’s not initiating the play.”
I don’t know. I was so focused on the fact that he was “pretend playing” at all that I never noticed HOW he was playing.
“Does he make eye contact with you when he asks you for things?”
The better question is, do I make eye contact with HIM? I don’t know. I usually have one eye on his brother making sure no one is getting into trouble…
“I just thought it was best to talk about it now, and not 5 months from now, in case it takes you a while to get an appointment. He’s a big imitator. I’m not sure how you run your house in order to help your other son…”
You can stop right there. I don’t run my house at all. Clearly. And yes, I have no idea what’s going on either. Is he imitating his brother or is this his behavior? He’s the polar opposite of Howie. Receptive language is right on target, expressive language is behind. Howie was the reverse. With both, behavior is a struggle.
And no, I have lost all concept of what is “normal” anymore.
I e-mail my friends with this update. One friend writes me back “Deep breaths. And chocolate.” I reply that I’ve already inhaled an entire box of cookies.
I make two quick calls to “reschedule” the appointment that we canceled back in March. But no time for tears or wallowing, because I had to pick up Howie for an appointment with a pediatric urologist. An hour away.
I run out to the car. Tim has thankfully come home to be with the two other boys. Turn the car on, warning bells ring. I have a brake light out.
I call to Tim: “My left brake light is out. Will that be okay?”
His response: “It’s going to have to be.”
We were, of course, late for the appointment, partly due to traffic and partly Howie became fixated on the revolving doors at the hospital. In the waiting room, the questions became repetitive. “Why am I here?” “Remember when it hurt when you peed a while ago?” “But I’m better now. Why am I here?”
The doctor’s exam was quick and he was quite good with Howie. He turned to me and we began to chat about how to keep this from happening.
“With kids like him, this could be a recurring problem.”
Kids like him?? What does he mean?
I turned and looked over at my son. Spinning, pacing, rocking back and forth on his legs. Flicking his fingers. Babbling nonsense words.
Oh. Kids like him. Kids with autism.
I wanted to cry.
I thanked him for his help and told him we’d be in touch for our next steps. The ride home was an exercise in perseveration – there was a bridge at the doctor’s office near the parking garage. He wanted to run on it. I had no idea until we were already on the highway. Forty minutes of “Turn this car around!” and “I’m going to ruin your life!” and “Mom, you’re so ANNOYING!”
(chances are, this won’t be the last time I hear that.)
The next several hours were completely unsettled. I lost track of how many times time outs I issued.
I’ve been spending the rest of this night eating my mint chocolate brownie (graciously delivered by my amazing friend) and thinking over the day. Everything just seemed to pile on. But I kept going back to what Tim said about my brake lights when I asked if it was going to be okay.
“It’s going to have to be.”
And that’s what I have to remember. That no matter what comes our way, we’ll figure out how to make it okay. Whatever steps we need to take to make things right, we’ll do it.
It was just one bad day, right? Just one bad day.
“Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong
Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
You’ve seen what you like
And how does it feel for one more time
You had a bad day
You had a bad day” – Bad Day by Daniel Powter
June 13, 2011
“Mom! iPad Angry Birds?” – my two year old this morning
I remember the first time I played Angry Birds. I was on the floor next to my two year old’s crib, hoping he’d fall asleep fast. I had so much to do, but he won’t fall asleep without me laying there. I borrowed my husband’s iPhone to check Facebook. Up to this point, I had avoided playing Angry Birds. I’m not a fan of video games, mostly because I’m not very good at them. But it was a quite night on Facebook, and I was desperately trying to stay awake in the dark. So I played.
I stunk at it.
So I played again. And again. And again until I beat that first level.
An hour passed. My son was long asleep. I was still playing.
The rush I felt that night was one that I had not felt in a while. It wasn’t addiction or compulsion. I could walk away.
It was more a sense of…accomplishment. For the first time in a long time, I was feeling like I finished something.
A lifetime ago when I used to work outside the home, I had that feeling all of the time. I would start a project and see it to completion. The accolades and rewards would come in with a “job well done” from my boss. Then I’d be assigned a new project, have more responsibilities, and see that through as well. The reviews would come in, and I’d feel great.
At home, my sense of immediate accomplishment is non-existent. Yes, I know I’m raising three incredible boys. All this hard work will pay off many many years from now, when they become great citizens of the world. But right now, there’s no instant feedback loop for me. I do a load of laundry, there’s four more right behind it. I clean one room, there’s five more that need attention. I pick up 50 Hot Wheels cars, and in 10 minutes I’m stepping on them again. I cook one meal, and there’s four people complaining about it.
But with Angry Birds? I knock down those towers and crush those pigs. I get a “yippee!” from the remaining birds, three bright yellow stars, and sometimes if I’m lucky, a new high score. And a new level unlocks with a new challenge, and I do it all over again. (more…)
June 10, 2011
I’m having a hard time figuring out how to start this post.
Probably because my emotions are all over the place. Today is the last Friday of preschool, and I’m just back from our final monthly parent meeting at the school.
Next stop, kindergarten.
There’s no question that Howie’s ready. We went over his last preschool progress report and reviewed all his goals and objectives. He’s where he needs to be. His teachers have created a fantastic transition plan for him, and the staff at the elementary school is well aware of his challenges and his strengths. They are ready for us to be there.
But I’m not ready to leave this school.
This is the school where it all started for us. The school that took us in when things were going so wrong. The place where we realized that we needed to get Howie evaluated and get him services. The staff that held my hand every step of the way during all those evaluations. The people who introduced me to the words “social story” and “applied behavior analysis” and “sensory diet”. The teachers who became partners in ensuring Howie’s success.
We were at a breaking point when we started two and a half years ago. Things could have gone so badly. But instead…
Everything has gone so right.
Clearly, I fear change. I’m not afraid to admit it. And it’s not that the new school is bad. In fact, it’s wonderful. My oldest goes there now. I know it will all be okay.
But I’m so comfortable in my preschool bubble. I know who to call when I need help. They know me and understand me.
In our meeting today, Howie’s teacher reminded me that “change is growth”. She was talking about Howie, of course, but she was speaking to me as well.
When Howie started at the school, he looked like this:
And now he looks like this:
My friends and I joke that we’re in a constant state of being proud and scared with our kids. With every accomplishment they have, it leads to the next stage of challenges and hurdles. I’m so proud and amazed by all that he has done in these few short years. I’m also scared out of my mind about what comes next.
I’m preparing myself with my timers and my visual schedule. Just don’t be surprised to see me having a meltdown on the driveway come August 30th.
Time for you to go out to the places you will be from
This room won’t be open til’ your brothers or your sisters come
So gather up your jackets
Move it to the exits
I hope you have found a friend
Every new beginning comes from some other beginning’s end.” – Closing Time by Semisonic
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