August 31, 2010
I am not a “hugger”.
I’ve never been one, either. I’m not sure why. I’m just not a fan. When someone comes up to give me a hug, I can feel my body stiffen. It doesn’t matter if it’s a close relative or an acquaintance, it’s just not something I’m comfortable with. I have learned to cope with it but it’s not my favorite way to greet someone.
I’ve understand now that I’m what is called a “sensory avoider”. I don’t like being touched or standing in a crowded room. Places like Costco and Wal-Mart make me want to run for the hills. I may end up paying more for diapers, but it’s better than having a panic attack next to the giant packages of paper towels.
My son Howie, on the other hand, is a hugger. A huge hugger. I haven’t officially kept track, but there are days when it feels like he has asked for about a thousand hugs. And all from me.
See the tabloid headline now: “Sensory avoider gives birth to sensory seeking kid!”. I don’t remember learning about this possibility when studying genetics in high school. Considering my husband is also a sensory avoider, we must both be carriers of the sensory-seeking gene.
Howie’s been a sensory seeker since I can remember. It started mostly with sleep issues, with a constant need to be next to someone (me) while sleeping. He created a technique he called “tunneling” – meaning he would stick his hands into the side of my neck and ask me to press my head down into his hand. This is how he would fall asleep for about two years until we discovered that weighted blankets, body pillows and 2mg of melatonin did the trick, although I still have to lay next to him at night with my arms wrapped around him in a giant hug as he falls asleep. Sometimes when he has a hard time falling asleep or is uneasy in a situation, he still asks if he can “tunnel”. With me. And only me.
The hugs can interfere with our daily routine. I’m trying to change a diaper, and he needs a hug. I’m trying to make or eat breakfast/lunch/dinner and he needs a hug. There are days when he asks me for hugs for hours straight. I know others see it and think it’s cute. When we had the Children’s Hospital researchers here a few weeks ago, Howie was clearly uneasy about them being in our house. He asked me over and over again “Can I have a hug?”. He would say this as he was digging his legs into my lap and his hands into my neck. The researchers smiled and said “aw, that is adorable!”. It was all I could do not to scream.
How awful is that? My own kid’s hugs can make me want to scream.
But it’s because they are more than just hugs, as I tried to explain to the research team. It’s his cry for help.
I’ve learned to differentiate between different hug requests – ones for when he’s happy and proud, ones for when he’s bored, ones for when his body doesn’t feel right after something he ate, ones for when he’s tired, and ones for when he’s completely out of sorts. Those last ones are the most difficult, because they hurt the most physically and emotionally. When he’s unable to regulate his body, he squeezes me so hard that he actually chokes me. But I know he needs them to make himself feel better, and it takes every inch of my being sometimes to give him the hug back.
But I do. Because I’m his mom. And I know it could be so much worse.
Until he learns how to regulate himself, those hugs are all he has to make him feel right. We’ve tried to teach him ways to help himself – squishing under pillows, sitting in the bean bag chair, climbing in the body sock – and we’re working on giving him better words to use when he’s out of sorts so others can help him. We’re always showing him more appropriate ways to get the sensory input he so desperately craves. My husband will pick him up and squeeze him like an accordion (because if he calls it a hug Howie runs screaming away from him), and Gerry will have a gentle pillow fight with him. My hope is that someday “Can I have a hug?” won’t mean “I need help”. Someday it will just mean “can I have a hug?.”
I can’t wait to write that headline.
“U can’t touch this
Look in my eyes,man
U can’t touch this
Yo, let me bust the funky lyrics
U can’t touch this” – You Can’t Touch This by MC Hammer
August 27, 2010
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: amusement park
, autism spectrum disorder
, bike riding
, Fenway Park
, Sensory Processing Disorder
, summer vacation
I’m not a big fan of what I call “obligation holidays”. I’m talking about days like Valentine’s Day, New Year’s Eve, and even my birthday. Holidays when you feel like you’re supposed to be doing something. Everyone asks what you’re doing on those days, and there’s the expectation that you need to do something great – a fabulous dinner, flowers, a midnight kiss. When it doesn’t happen, there’s a feeling of total failure. The end-of-the-day giant letdown.
Summer has always felt like one big long obligation holiday.
There’s the anticipation at the beginning of summer. Oh, we’re going to go on a trip, and go to the beach, and have cook-outs and family bike rides. This will be the year we finally take the boat out again, and…
(that last one is a tough one for me…the boat has been sitting in our garage for six years now. Tim and I used to talk about it every spring, thinking that maybe this will be the summer that we’ll rent a place on the lake for a week and spend the whole day out on the water like we used to do before…well, before everything. We don’t even mention it anymore. We both just stare at the boat in silence as we stack strollers and scooters and trash cans up against it.)
This summer I decided to break the cycle. I know our family better now. I know our limitations and have a better understanding of what we can and can’t do. I set zero expectations for this summer. And as I wrote back in June, I dug my heels in and started counting the days until September.
And now, Gerry starts school on Tuesday, and Howie the week after that. Gerry has a memory bag that his new teacher gave him on the last day of school, and he’s supposed to put special things in there from his summer adventures. I remember getting sad looking at it, knowing that I had nothing special planned, and just hoping we could find a thing or two so the bag wouldn’t be empty when he returned to school.
So here I sit now, the last Friday of August. I’m trying to figure out what we could put in that bag.
The truth is, quite a lot. Here’s what we did on our summer vacation:
-attended a wedding (my mom’s)
-went to Storyland
-went blueberry picking*
-went to the library
-played at the park (not once, not twice, but three times)*
-went to the zoo*
-shopped at the mall
-went to the beach (just me, Gerry and Howie)
-took family walks
-taught Howie how to ride his bike
-played in the backyard
-went to the New England Aquarium
-saw a ballgame at Fenway Park (ok, this was just Tim and Gerry, but still cool)
-went to birthday parties (two of them – both Howie’s friends, first time ever)
-took all three boys swimming in friends’ pools (once even by myself!)
-survived camp/summer school/swim lessons (just barely)
-had a sleepover (Gerry’s first…more on this another time)
-bounced in a bounce house. All five of us together.
note: the (*) next to some of the activities on the list means I did them with the assistance of a mother’s helper. I hired the 15 year old daughter of Howie’s one-on-one aide to help me out two mornings a week on the days when Howie wasn’t at his summer school. The best decision I ever made and worth every penny. I’m pretty sure this summer would have been an even longer one had I not done that. I’m forever grateful for her help.
I’m exhausted just typing that list. Well, I’m exhausted with a smile on my face.
To the average family, that list might not seem so impressive. It’s probably what most families do during those 12 weeks of summer. But for us? Not so average. Getting us out of the house is sometimes accomplishment enough. Getting us anywhere is impressive.
Were there days when the minutes seemed like hours and the hours seemed like days? Absolutely. Were there days when I thought that all the progress we’d made with Howie this past year had disappeared in an instant? Definitely. Were there days when I sat at the computer, trying to hide my tears from the boys? More than I care to count. Were there tantrums, meltdowns, and screaming matches at some of those activities? Oh yes (just ask them at the zoo…)
But there were also mornings that started with laughter, when the coffee pot wasn’t the first thing I reached for. Afternoons filled with baseball, and swings and bike races. Nights when I fell asleep easily, knowing that we had made the most of the day.
That is our new version of summertime. The living isn’t easy, but it’s the best we can do. I know we’re not the rent-a-place-at-the-lake kind of family. At least not now.
Gerry has several things to put in his memory bag now, including one more to be made today with his dad at the water park. They’ve waited all summer for the perfect day to go. Can’t get more perfect than today.
“Perfect song on the radio
Sing along ’cause it’s one we know
It’s a smile, it’s a kiss
It’s a sip of wine, it’s summertime
Sweet summertime” – Summertime by Kenny Chesney
August 22, 2010
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, autism spectrum disorder
, betty white
, golden girls
, Sensory Processing Disorder
, support group
I’ve been thinking a lot lately about the show “The Golden Girls”.
Stay with me for a moment…
I was recently reading one of my favorite blogs written by my new friend Partly Sunny. I call her my friend even though I’ve never met her and have only “conversed” with her through our blogs and by e-mail. She has a perspective on all things autism that is different from mine, and recently she asked me if she was upsetting me with some of her comments. My response was of course not, that I respected her opinions and point of view, and I found her comments to be refreshing and important to hear.
All this started me thinking about my new community of parents with kids on the spectrum and parents of kids with sensory processing disorder (and in so many cases, these parents are one and the same). We listen to each others’ stories, comment on them, and then tell our own and get our own comments. I’ve been lucky enough to meet an amazing group of parents out there in cyberspace and in person. I enjoy hearing their stories and others do me the favor of listening to mine.
And for some reason, all of my new friends reminded me of the show “The Golden Girls”.
Still with me?
“The Golden Girls” was a show back in the mid to late 1980′s about four older women living in Miami. Each woman had a distinct personality and role on the show. I’ll out myself as a faithful watcher those Saturday nights through high school (now you know how exciting my life was back then). There was Dorothy, played by Bea Arthur, the voice of reason in the group and clearly the one in charge. Her mother, Sophia, was played by Estelle Getty, and was the wise-cracking sarcastic one, yet lovable in her own way. There was Blanche, the sassy southern belle man-chaser with a heart of gold played by Rue McClanahan. And my favorite, played by Betty White, was Rose. She was naive and took everything literally. She was the sweetheart of the group and the one they protected the most from the outside world.
So on Saturday nights for seven years (and for decades in syndication), these women entertained America. On the surface, they had very little in common and disagreed on a lot. Yet they had a formed a bond stronger than those disagreements, and at the end of every episode there was some sort of group hug.
That’s what this amazing community feels like to me.
I read a lot of blogs and websites and have the good fortune to have people reading mine, and have made many friends along the way. We have our voices of reason like Dorothy who guide us in the right direction. There are the wise-crackers like Sophia who are always there with a joke or comment to make us laugh. There are the sassy Blanches with the heart of gold. And of course, our sweet Roses who will always say the nicest things to make us feel better, even when the situation is dire and sad. We disagree on a lot – the causes of autism, what treatment methods to use, and whether or not we should look for a cure. In many ways we have almost nothing in common. To extrapolate on a saying “if you’ve met one parent of an autistic child, you’ve met ONE parent of an autistic child”. Yet remarkably we have one strong bond: the desire to be there for each other in whatever way we can. Because we “get it”. Because we’ve been there. And because we need people to be there for us.
Just like the end of every “Golden Girls” episode, each night before I go to bed I feel like I’m getting a big group hug from everyone out there. Every comment that I read, either on my blog or on others, reminds me that people care. Every text or e-mail I get from my friends shows me that I’m not alone. Each day my faith in humanity is restored by the Dorothys, Sophias, Blanches and Roses out there in cyberspace and in my daily life.
Thank you all for being my friends.
“Thank you for being a friend
Traveled down the road and back again
Your heart is true your a pal and a confidant.
And if you through a party
Invited everyone you ever knew
You would see the biggest gift would be from me
And the card attached would say thank you for being a friend.” – Thank you for Being a Friend by Andrew Gold (Golden Girls Version)
August 20, 2010
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: ADI
, autism spectrum disorder
, interactive autism network
, Sensory Processing Disorder
, simons foundation
I am completely exhausted. All in the name of science.
About three weeks ago, I received a letter in the mail from the Interactive Autism Network, asking if we’d participate in a research project through Children’s Hospital. The study, sponsored by the Simons Foundation, is looking at families with just one child on the autism spectrum in attempt to understand if there’s a genetic or environmental link to autism. All participants receive an autism evaluation for their child for free. My family fit the research criteria perfectly : only one child with an ASD diagnosis aged 4-17, one or more typically developing sibling older than 4, two biological parents willing to participate, and no other cases of ASD in the immediate or extended family (that we know of).
At first, I put the letter into the recycling bin. I wasn’t all that interested in putting my family through some research project, and I was somewhat skeptical of the study as a whole. But something kept bringing me back. We fit the criteria perfectly. What if by gathering data on our family, we were able to help scientists find a cause for autism? What if we were able to help identify ways for earlier detection, and thereby earlier intervention? I did a little research into the Simons Foundation and the project in general, talked to Tim about it, and decided to give them a call.
I asked all the appropriate questions, and got all the acceptable answers. Yes, it was all anonymous. The blood samples and questionnaires were all assigned an ID number so we could not be identified. The information from the assessment would be ours alone and we could choose to share it with school and/or our doctor if we wanted to. The blood draw would be handled by Children’s Hospital by a team comfortable working with kids on the spectrum (and 8 year olds who are terrified of needles). They would even send us a practice kit and a social story for the blood draw. The kids would be compensated for their participation, and the researchers would come out to the house for the interview portion of the study. After getting the ok from Gerry about the blood work (five minutes of torture equaled a new Star Wars Lego set in his mind), we set up the appointment.
(speaking of Gerry, we included him fully in the discussion of whether or not to do the study. His participation was important and we thought he was old enough to understand the purpose of the research and how he could be helping scientists discover the cause of autism. He thought about it for a long time, as he is apt to do. He came down on the side of helping kids like his brother. Couldn’t have been more proud of his thought process. The only exception is when I told him that the criteria involved having one kid who is on the spectrum and his other sibling not on the spectrum. His response to me: “well, I know I’m not. But we don’t know about Lewis yet.” Ugh. That was the kick in the gut that I didn’t need).
So today two researchers came out to the house and spent four hours with me and Howie. One researcher administered the ADOS (Autism Diagnostic Observation Schedule) to Howie, and the other one went over the ADI (Autism Diagnostic Interview) with me. Howie did great – he spent almost the whole four hours at the table with the woman with just a few short breaks. On the other hand, I was a wreck. The questions were incredibly comprehensive and detailed, asking me to recall a million small details of the last four years of our lives. She asked about his speech, social interactions, and what developmental milestones were met or not met. She asked for specific examples of speech patterns and moments of aggression. She asked when we first noticed problems. She asked four straight hours worth of questions.
I tried really hard to focus. In so many ways, it was as if I was reliving those years all over again. I could feel myself starting to fidget, and my body language was clearly showing my discomfort. I know this because the whole interview was videotaped, and the little screen was turned around facing us at the table so my crossed legs and arms were staring right back at me. It didn’t help that every question that I answered out loud for Howie I was answering in my head about Lewis. A little bit of knowledge is a dangerous thing, and I was diagnosing Lewis along the way.
After finishing the ADI, we went through two more questionnaires – one about Howie and one about Gerry. She gave me a few others to complete before our blood draw day at the hospital, including one social behavior questionnaire that I answer about me and one that I answer for Tim (and vice versa – that should be interesting). They closed up their video cameras and went on their way around 2pm. Thirty minutes later, Howie was out for a nap. He was done. And so was I.
I’m still having some mixed feelings about the whole thing, even after today. We’ll finish up the study at the hospital in a few weeks and get the complete report from the assessments in about 6-8 weeks. I’m not really sure what we’ll do with the information we get. The scientist in me says that I should just file it away, that the point of participating is to help gather data with the hope of discovering a cause of autism spectrum disorder. That’s pure science.
Then I remember there is no scientist in me. Just a parent looking for some answers and some hope for the future for myself and my family. Just like so many other families.
“She blinded me with science!”
And hit me with technology” – She Blinded Me With Science by Thomas Dolby
August 17, 2010
I am honored to be writing over at Hopeful Parents today. If you haven’t looked at the site before, check it out. It’s a great place for parents with special needs kids to meet, chat and learn from each other.
I will be writing at Hopeful Parents once a month, adding my small voice to the many amazing voices sharing their stories.
Click below for the link to my post
The Wheels on the Bus
August 12, 2010
(my oldest has become quite interested in what I’ve been writing on my blog, and asked if he could write something sometime. He was having trouble getting started, so we thought we’d begin with me interviewing him. These are his responses – some he wrote down himself, some he told to me – but ALL his words. The boy is wise beyond his years. I hope he’ll be a frequent guest writer here.)
(and yes, I know he doesn’t have any sisters. I just love this song from Free to Be You and Me and I thought it fit.)
Interview with a Big Brother
Tell me about yourself
I’m 8 years old going into 3rd grade. My favorite school subject is reading, my favorite sport is baseball and my favorite video game is Lego Star Wars.
What’s the best thing about being a big brother?
The best thing is that your little brothers are looking up at you as a role model.
What’s the hardest thing?
The hardest thing is that my 4 year old brother can be a little annoying sometimes.
What’s your favorite thing to do with your 4 year old brother?
I like it when my room is clean enough and he can come in and play.
What’s one happy time together with him?
He likes to run and jump over a small couch, so most of the time I do it with him.
What was an unhappy or hard time?
When he is eating he chews with his mouth open which annoys me.
What does it mean to you that your brother is autistic?
It means that his brain developed differently than normal people.
What’s the hardest thing about having a younger brother with autism?
He can’t really control certain situations. It’s hard for me because if I’m sitting in the green chair and he wants to sit there, he pretty much gets his way, otherwise he goes off screaming or unhappy.
Is there anything you would change about your relationship? What would you keep the same forever?
I wish he could control certain situations, so if he was making his silly noises, and someone asked him to stop, he would and ask where he could make those noises.
I would keep what he likes – his Hot Wheels cars and the food he likes – the same because I like them too. I don’t really want to change his personality.
Imagine it is 20 years from now. What do you see you and your brothers doing?
I would be 28, and my brothers would be 24 and 21 years old. So we’d all probably have a car. I think we’d be sitting on a couch – well, one of us sitting on a chair – watching baseball together.
“Brothers and sisters, sisters and brothers
Each and every one
Sisters and brothers, brothers and sisters
Every mother’s daughter, every father’s son
Ain’t we lucky, everybody
Bein’ everybody’s brother
Ain’t we lucky, everybody
Lookin’ out for one another” – Sisters and Brothers from the Free to Be You and Me soundtrack
August 10, 2010
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, autism spectrum disorder
, sensory breaks
, Sensory Processing Disorder
I had a horrible horrible dream last night. The kind that wakes you up with a start in a cold sweat – the bolt upright in bed kind of dream that you see in the movies. The kind where you’re afraid to go back to sleep, because you fear the dream will start back up again where it left off.
I won’t go into the details, but it was in the genre of “every parent’s worst nightmare” kind of dream. I laid there in bed for a while wide awake, mostly because I was afraid to go back to sleep.
For as long as I can remember, I’ve always had anxiety dreams. My college roommate’s dreams were these grand “good versus evil” extravaganzas, where the players dressed in medieval garb and fought with swords and serpents. In my dreams, the players are familiar faces, acting out some twisted scene from my subconscious. I’m a firm believer that my dreams have some sort of message to me, something I’m supposed to do or understand. It was clear this particular dream was sending me this message:
It could be so much harder
Let me be clear, I am in no way minimizing how hard life is with a kid on the autism spectrum. I know that every day, and even every moment, is a struggle sometimes with our kids. I know that many of us live on the edge, waiting for that moment when our kids will say their own name or give us some recognition that they understand the world around them. I know the fear and worry that so many of us have about the future for our children, wondering if they’ll be able to grow up and survive in the world without us someday. But this dream reminded me of the alternative – the horror of making life and death choices about our kids and the unspeakable pain of outliving them. I know there are parents out there that suffer with this everyday – holding their own lives together while they care for their children who can’t walk, or eat, or breathe on their own.
So there in bed I laid with all these thoughts swirling around my head. I spend hours of my day in constant active autism mode. From the moment we wake up (and even during the night) I’m managing, planning, scheduling, observing, re-planning, and organizing our lives around Howie’s sensory needs. Activities are planned and timed with these needs in mind in order to minimize tantrums and outbursts. We avoid certain foods and smells so we don’t set him off. Our house is full of timers and schedules and body socks and social skills scripts so we can always bring him back to the moment when he’s overloaded.
While these are all things necessary to help him cope and understand his world, there are days when I feel like it’s all we do. When Howie’s running through the house, jumping over pillows with Lewis chasing him, in my head I say “he’s getting his energy out because his engine is running high”. When Howie asks to be pushed higher and higher on the swing, in my head I say “he’s getting the sensory input he needs”. When he’s sitting at a table with his friends having a snack and telling jokes, in my head I say “he’s developing good social speech skills”.
Why can’t I just look at these situations and in my head say “Look at my Howie. He’s having fun being a kid”? Is it because I know too much now? Have a become so mired in all-things-autism that I can’t look at a situation without identifying what IEP goal is being met at that time?
If my dream was showing me anything, it was that I need to be more appreciative of the moments that I have with him and all my boys. I need to stop always focusing on how Howie’s interactions with us all meet his sensory needs, and just let us…play. I need to laugh along with Howie and Lewis as they run and crash into the pillows with reckless abandon. I need to push Howie as high as I can on the swings because he wants me too, and because it’s fun. I need to sit down at the table with Howie and his friends and tell jokes that only make sense to four year olds, because that’s what four year olds do.
My dream showed me that the alternative is unimaginable to me.
I finally calmed myself down and fell back to sleep around 3am, about 30 minutes before Howie tried to climb into my bed as he has done on so many nights. Usually, I take him back to his bed and lay there with him until he falls back to sleep, and then I return to mine. This time, I pulled him into bed with us. Tim told me this morning that when he left for work at 5am, I was snuggled up tight against Howie with my arms around him.
Doesn’t surprise me. My dream told me to savor any and every minute I have with my kids, no matter how hard it is in that moment. Because it could always be unthinkably and unimaginably harder.
“These dreams go on when I close my eyes.
Every second of the night, I live another life.
These dreams that sleep when it’s cold outside,
Every moment I’m awake, the further I’m away.” – These Dreams by Heart
August 7, 2010
I just registered to walk for our local “Walk Now for Autism Speaks“. I’ve known about the walk for a while, but just today got up the guts to actually register for the event.
The guts, you say? It’s a one mile walk around a race track. What guts does that take?
Well for me, a lot. When I first read about the event, I decided we weren’t going to participate. I had a million reasons as usual. I would have to schelp the whole family into Boston early in the morning. It’s the week before my first 5K and I didn’t want another thing to have to think about. I hate asking people for money. There would be a lot of people there, and I’d have to manage my family with the crowds. I hate porta-potties.
Of course, as usual, these weren’t the real reasons for my hesitation. I just wasn’t sure if I was ready yet to do it.
When my son was first diagnosed, we started getting a lot of information from our local autism resource center. One of the events they were promoting was a race/walk to raise money to support that center. Feeling bombarded and overwhelmed by everything, my husband and I decided we weren’t going to participate. The fact that it was happening on a weekend that we were going to be away helped that decision, but truthfully we couldn’t have done it even if we were around. It wasn’t that we were in denial, although there were still a few doctors questioning if our son had been misdiagnosed (our pediatrician thought he had ADD, our GI thought maybe it was bad reflux or an allergy). I think we just weren’t ready to announce to the world that our son was autistic. Or at least it seemed like that’s what we would have been saying if we participated in that fundraiser.
Fast forward to now, several months later, and it’s clear our son wasn’t misdiagnosed. Along the way our family has slowly come to terms with what his diagnosis means for him and for us all. Hiding in the shadows of our pride didn’t help anyone, especially our son. While still attempting to maintain our privacy, we’ve opened up more to family and friends about what his autism means and we’ve met some amazing people along the way. I’ve helped start a support group to reach out to other families in our town so we all feel less alone.
I write this blog, for goodness sakes. Can’t get more public than that.
But still the hesitation came when I saw the e-mail about the Autism Speaks walk. Why was it that I was still so uncomfortable about signing up?
It’s taken me until today to figure it out. As “out there” as I thought I was, through our group and through this blog, it’s still been within my comfort zone, surrounded by people I know or anonymous people in cyberspace. By participating in the walk, by asking people for money, by actually walking that day with my kids, I was no longer going to be a just a quiet voice in the corner. I would be out there with the potential to be photographed, interviewed, and questioned about my son. It brought me back to that first day when I walked into the gymnastics class just for kids on the spectrum. I spent that whole time wondering if we were in the right place until the end when I realized that we belonged there.
And it hit me. We belonged at the walk just like we belonged at the gymnastics class.
The Autism Speaks walk is the perfect place for us to feel like we’re among friends. It’s a one mile walk followed by activities and entertainment geared towards families like mine. No one there will care if we get there late because we couldn’t get out of the house on time, or have a meltdown on the track, or a tantrum leaving. I’m guessing we won’t be the only ones. This is also an organization that has given our family so much – it was the first place I went for information after my son’s diagnosis, and it was the place that published my essay about that gymnastics class. That essay is now included in their 100-day kit, which is sent out to families all over the world to help them understand what to do after receiving their child’s autism spectrum disorder diagnosis.
Now that I’ve registered for the walk I’m hoping that a few friends will join me too. If they don’t, I understand completely. If someone had asked me last week if I wanted to walk with them, I might have said no. We all need to get to that place in our own time. I don’t want anyone to feel like it’s something they have to do. For me this is something I finally WANT to do.
If you’re looking for me there, I’ll be the one trying to blend in with the crowd.
“Walk on through the wind,
Walk on through the rain,
Tho’ your dreams be tossed and blown.Walk on, walk on
With hope in your heart
And you’ll never walk alone,
You’ll never walk alone.” – You’ll Never Walk Alone by Rodgers and Hammerstein
August 3, 2010
I had a post all set to go. And it was ugly.
I wrote about how frustrated I was with myself and my world. Back in May, I had set a goal to run my first 5K in October for the Flutie Foundation. I have never been a runner, but I thought this was an important step, an attempt to get healthy and do something for me while helping to raise money for a worthy cause. I got my running gear (translated: new sneakers for the first time in 5 years, my first iPod, and my first sports bra), joined the “couch to 5K” program, and started running. My pace wasn’t great, and I was doing more walking and jogging than running, but at least I was out there. I was able to run a few times a week after the kids went off to school with the baby in the stroller, and at least one weekend morning through May and most of June. Summer was approaching and I had a grand plan of getting up before everyone else did and getting back in time to get the kids ready for camps or summer school.
I wrote that then July hit and everything fell apart.
My hope that I would be able to run more when the kids were out of school was quickly squashed. I had a thousand excuses as to why I didn’t run all July. It’s been hot and humid. At least one of the kids has been up until 9 or 10pm each night and then another one up by 6am in the morning. My sports bra wasn’t clean. And in the chaos that has overcome our house this summer, I couldn’t find my iPod.
The real excuse is the harder one to admit of course. July had left me physically and emotionally exhausted. It is the first summer that all three boys have been completely mobile so I have been breaking up arguments, monitoring pillow fights and running back and forth from the front yard to the back yard to keep an eye on whichever kid decides to be where at that moment. This is also the first summer after Howie’s autism diagnosis, and I have schedules and routines and therapies to plan. I have become quite good at making things run smoothly around here, but it takes an enormous amount of time and effort to do that. There’s no sitting in the yard in a lawn chair sipping ice tea while my kids play. It’s constant hands-on parenting, twenty-four hours a day.
I wrote how upset and frustrated this all left me. The one thing – the ONE thing – I set aside for myself to do I couldn’t seem to get to it. Running was just mine, just me and my “Glee” songs on my iPod and 45 minutes of alone time. But I was spending so much energy planning and putting out fires before they started I was left feeling like human flame retardant. Sure, I could have set the alarm for 5:30am. But in so many cases, I had just crawled back into my bed after getting someone back to sleep an hour or so earlier. I was so…tired.
I wrote how this was all contributing to me being in a dark place. I was resenting the fact that I couldn’t just take off and run, or even shower, without the “permission” of four other people. I wrote that I had come to the realization that this was just how things were going to be, that right now everything and everyone else had to come first for our lives to feel like there was some order. I wrote how I had just stopped trying to find my missing iPod.
And, just as I was about to publish that post, this was in my e-mail inbox:
Be selfish (click on the words to see the link)
I follow Luau’s wife’s excellent blog, and she had linked to his running blog when he wrote how living with autism is like running a marathon. I had commented on that post, saying that it helped me realize that I need to take care of some things around here before I can start running again. And then, this new post from him arrived. He wrote about how important it is to take care of ourselves, that being selfish isn’t a dirty word although so many of us think it is. That if we aren’t a little selfish, then we aren’t any good to the people that we are trying to care of. And at the top it says – to me – “you will run that 5K“.
I stopped writing my ugly post and wrote this one instead.
He’s totally right. I need to be a little selfish. I need that time to make me a better parent and wife. Not only does it give me a few minutes away from the chaos, it also shows my kids that taking care of myself is important. It doesn’t have to be running for everyone – as he wrote it could be just getting a haircut or a evening out for dessert and wine with some friends. We all need to find that one thing that is just for us and stick with it. Otherwise we could fall apart and be of no use to anyone. However, what was most remarkable to me was that here was someone who doesn’t even know me reminding me that I needed to get running again. It just shows how well this community supports each other. Because if we don’t pick each other up, no one else will.
His post was the kick in the butt that I needed. I finished reading it, closed my computer, and looked for my iPod. It was right where it should be, but I wasn’t able to find it before behind the mess. My alarm is set for 6:30am tomororw, and I plan to run even if the whole house is already awake by then. Every day in my life may feel like a marathon, but to get to that finish line I need to be in the best shape of my life.
I have eight weeks until the day of the Flutie Foundation race. And Luau is right. I will run that 5K.
“It was a beautiful day, sun beat down.
I had the radio on, I was drivin’
Trees went by, Me and Del were singing
little Runaway, I was flyin’
Running down a dream.
Never would come to me.
Working on a mystery.
Going wherever it leads.
Runnin’ down a dream.” – Runnin’ Down A Dream by Tom Petty
August 1, 2010
Something happened yesterday that hasn’t happened in a very long time.
We had an almost perfect day.
It was a day when there was much potential for things to go badly. With the exception of swimming lessons for the older boys in the morning, I had nothing planned for the day. And in many many cases that is a recipe for meltdowns, arguments and disaster in our house.
But it didn’t happen.
We started to have some trouble brewing just about lunch time. The boys were hungry and wound up from swim lessons, and the doughnut snack on the way home probably didn’t help. We had all just come in from being outside in the backyard so I could put Lewis down for his nap. The potential for mischief was running high. But right then, a plan popped into my head.
“Howie, you sit nicely while Daddy gets Lewis to sleep and we’ll switch your car seat for Gerry’s old booster seat.” He had been asking for months if he could finally have a booster seat. I told him that he needed to be in underwear full time before that was possible. Really, it was a way to buy time so he could finally meet the weight requirements for the booster. Plus, I liked that he was completely strapped in, unable to escape his seat by himself. But since diapers were now a thing of the past (yea!) and he had cracked that magic weight number, I figured it was time follow through and make the switch.
“Really? I can really have Gerry’s old black and gray booster seat that is in the garage?” Nothing is cooler to Howie than his older brother’s stuff, and he was making sure we were talking about the same seat.
Gerry, Howie and I went out to the car to get the old seat while Tim put Lewis down for his nap. Howie helped me carry the old one into the garage, and put the booster into the same spot in the car. Gerry told him to try it out, and we buckled him in with the real seat belt. Howie started making all sorts of faces in the mirror in front of his seat in the car. We’ve had that mirror there since he was an infant and just never bothered to move it.
“What are you doing? Are you uncomfortable?”, I asked.
“Nope,” came the answer. “I’m just seeing how much older I look in my new seat.”
We took a drive around the neighborhood to test it out. Throughout the whole ride he was quiet, staring at himself in the mirror. When we pulled back into the driveway he proclaimed “I am SO OLD now!”. He wasn’t lying.
Buoyed by that success, I decided to take it one step further and pulled out Gerry’s old bike with training wheels from the back of the garage. All summer Howie’s been afraid to try it, preferring instead to stick with his Little Tykes bike that is lower to the ground. I convinced him this time that since he was big enough now for the booster seat, he was big enough for the real big boy bike.
“Ok, I’ll try it, ” he said, “But only if you hold on.”
And it didn’t matter. Because within a minute he was pedaling himself around the driveway as if he’d been riding that bike all summer long.
“I’m SO BIG NOW!”, Howie exclaimed. “I am going to ride my bike all day and all night!”
I’ll admit, I got a little teary. I spend so much time focusing and obsessing about what he can’t do, and how hard things are and will be for him in the future. It was about time I stopped to celebrate what he can do now and what he might be able to accomplish someday.
While he didn’t ride all day and all night, he did ride in a circle in the driveway for two hours straight. He got good enough to avoid Lewis running after him, and could get himself over the cracks in the driveway. We took a break for dinner (out to Pizzeria Uno’s where everyone ate their dinners without complaints – another miracle of the day!) and played outside until the mosquitoes started to bite. There was no whining or tantrums about showering or teeth brushing, and all three boys ended the night together in my bed laughing hysterically watching an episode of “Wow Wow Wubbzy”.
The day was not without its bumps in the road. Gerry and Howie argued over which one of them would get to be the police officer on their bike and which one was the bad guy. They cut each other in line climbing up on the swing set to get to the slide first. But these were, dare I say, “typical” sibling interactions. There were no complaints from Gerry that Howie was making his “annoying noises”. Howie wasn’t running laps in the house trying to get his energy out or crashing into his brothers. It was just a regular beautiful day.
I’d like to chalk it up to the fact that I’m finally starting to understand Howie’s needs more and anticipate them, and the strategies and therapies that we’ve worked on are starting to kick in. More likely it’s the fact that this was the first Saturday in weeks that it wasn’t 90% humidity and 95 degrees outside. And I’m guessing that the large Dunkin’ Donuts iced latte I had on the way home from swim lessons helped as well.
Whatever it was that made the stars align as they did, I’ll take it. These have been rare days this summer and they need to be celebrated. It was an amazing way to end what had been a very difficult month of July.
Time to go. We’re riding bikes again today, and I don’t want to waste a single beautiful minute.
“It’s a beautiful day
Don’t let it get away” – Beautiful Day by U2