November 28, 2011
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep. – Stopping By Woods on a Snowy Evening by Robert Frost
A love letter.
Before you, I was lost.
Before you, I didn’t know who to turn to in my time of need.
Before you, I couldn’t find the words to share my pain.
Before you, I thought I was alone.
Before you, the judging looks rattled inside me and left me in tears.
Before you, I stared at pages of paperwork and walked away.
Before you, I was overwhelemed.
Before you, I stayed quiet in the corner.
Before you, I didn’t know me.
Because of you, I found my path.
Because of you, I know that support is just a phone call, text, Facebook and twitter message away.
Because of you, I have a voice.
Because of you, I walk miles with a village.
Because of you, I can minimize the mitigating language.
Because of you, I ignore the judging looks and respond instead with a knowing smile.
Because of you, I can spell out the swear words and know that it feels so much better.
Because of you, I have learned how to be proactive and not reactive.
Because of you, I can sit at a meeting and say “It’s not my child who failed here. It’s all of us around this table that failed him.”
Because of you, I see the path ahead and know it gets better.
Because of you, I can turn to those just starting this journey and tell them that too.
Because of you, I can laugh through the tears.
Because of you, I found me.
To my friends and family, I thank you.
“There’s a new wind blowing like I’ve never known.
I’m breathing deeper than I’ve ever done.
And it sure feels good to finally feel the way I do.
I wanna love somebody, love somebody like you.” – Someone Like You by Keith Urban
If you happen to be on Twitter, there’s a great hashtag running on there right now #YouMightBeAnAutismParentIf. It’s community and compassion all wrapped into 140 characters. The tag has been running for over a week with some incredible comments. A few of mine were:
you look to friends w/older kids to tell you “it gets better” then turn to those w/younger kids to say the same.
you do everything in your power to protect and advocate for your child, and wonder why others don’t do the same.
November 24, 2011
Join me for an 813 mile car trip on this Thanksgiving Day today…my packing list for the big day is over at the SPD Blogger Network.
I only wish it was an exaggeration.
I am most thankful today for my amazing kids, my incredible husband who is in the driver seat on this journey, and for the friends that we have met along the way. Your love and support keeps me going every day. Thank you.
813 Mile Car Trip
November 21, 2011
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, autism spectrum disorder
, Sensory Processing Disorder
, special needs
, wit and wisdom of special needs
|  Comments
Chip off the old block.
The apple doesn’t fall far from the tree.
and my personal favorite, taught to me by a friend:
Cats don’t have dogs.
Because really, they don’t.
All these expressions mean the same thing – our kids are a lot like us.
I’ve written a lot about all the sensory challenges that my son Howie has. But my other two have their sensory “things” too.
As do I.
I’m a clear sensory avoider. I don’t like hugs or being too close to people I don’t know. I’ll be the one to sit across the room on the chair rather than share a comfy couch. I can’t stand it when someone sits right next to me in a movie theater, especially when there are still plenty of open seats. And at a party or gathering, I’ll be the one holding up the wall in the corner, nursing the same drink all night so I don’t lose my spot. That’s just me. And really? Never touch my neck. Or feet. Off limits. I haven’t worn a turtleneck or scarf since I was in grade school, and if I can avoid socks and boots, I’m a happy person.
I have my food issues too. If something doesn’t smell or look right, I can’t eat it. While I am a big fan of food in general, I have some serious texture issues. Like tomatoes. And olives. And a banana that is more than a day ripe. I’m shuddering as I write.
And of course, my fear of failure paralyzes me. I quit softball because I didn’t want to try out. I worked my butt off in school because the thought of a bad grade terrified me. I retreat and read to escape.
My oldest is a lot like that. He likes his personal space, and he likes it quiet. He can’t stand it if his shirt is too tight on his neck. If the house gets too noisy or if someone in his class is clicking their pen, he’s upset. His food needs to look just right or he won’t eat it, and forget about mixing any food together. He’ll play baseball but gets frustrated quickly with team competitive sports. He prefers to play the piano and read. He gets really good grades, but wants more from school than just rote work. He wants it to mean something.
My youngest needs his socks to fit just right and his pajamas to be loose. I used to think that his meltdowns over spilled food were a sensory thing, but we discovered quickly that it was because he was missing out on food.
And my husband…well, this is my post not his. Let’s just say that our two sensory avoiding/perfection seeking trees created some apples that didn’t fall far from us. Or something like that.
It’s clear that somehow our kids got this from us.
Somewhere in the mix, Howie came along as the lone sensory avoider and seeker. He’s the only one with an actual sensory processing disorder diagnosis. And with that also came the autism spectrum diagnosis.
So it was great interest and a knowing smile that I read the essay “Like Mother, Like Son” by Amanda in the book Wit and Wisdom from the Parents of Special Needs Kids (yes, that’s the book I’m in too!). I’ve been a reader of Amanda’s great blog Confessions From HouseholdSix for a while, and was so glad when she agreed to write a post for the SPD Blogger Network on her son’s sensory issues. They received their second autism diagnosis in the their family about a month before we got our second one.
In her essay, she writes:
When I dreamed of what my children would be like, I dreamed they would be like me. They would get good grades in school. They would like to play sports. They would be involved in other academic activities after school as they got older. I never dreamed of the word autism.
Autism has been a funny little word in our house. My oldest son was diagnosed later at age eight and a half. By this point I had realized that this child is me, only more intense. But he is me. Does that put me on the spectrum too? This is a question that my son’s diagnosis has made me ponder often.
She goes on to talk about all the sensory issues that she shares with her son, and they were so familiar. Clothing troubles? Check. Food issues? Check. Desire for perfection? Check.
Her last paragraph sums it up nicely:
Are these all traits of autism? It’s hard to say. Does this mean I’m on the spectrum too? I don’t know. I do know that autism or not, I did get a child like mine.
And this is, of course, what swirls around in my head all the time. Is my oldest on the spectrum too, like his brothers? Are we?
It’s a question that I’m not sure has an answer, nor perhaps does there need to be one. We all know that the spectrum is broad and wide, and that everyone – EVERYONE – has some sensory issues. It’s about how you cope with them. For Howie, he can’t cope with them right now. So we’re teaching him. And in that process, we’re teaching his brothers – and the rest of us – how to cope as well.
I do know that seeing pieces of me in my kids gives me a better understanding of what they are going through, and gives me more patience and tolerance in helping them through the tough moments.
That’s what Amanda’s essay did for me. Seeing myself in her words helped me be a better parent. Just another way that I feel a little less alone in this world.
“As we go down life’s lonesome highway,
Seems the hardest thing to do,
Is to find a friend or two.
That helping hand, someone who understands.
And when you feel you’ve lost your way,
You’ve got someone there to say, “I’ll show you.”
Say you, say me, say it for always,
Aw, that’s the way it should be.
Say you, say me, say it together, naturally” – Say You, Say Me by Lionel Richie
Buy The Book - You'll Feel Less Alone too
November 17, 2011
My husband was away for a week.
My son’s world was turned upside down.
Our servicemen and women are away for so much long.
Imagine their kids’ world?
How can we support them when they are so far away?
Come read how at Hopeful Parents today.
All it takes is one letter. One phone call.
So Far Away
This one is for this friend, and this friend, and this friend.
November 13, 2011
The flame on the memorial candle is starting to flicker.
I lit it last night in memory of my dad. The candle burns for 24 hours. This is the 12th time I’ve lit it, remembering the day he died 13 years ago.
My house is quiet. Everyone is asleep.
This is the first time I’ve watched it burn out alone.
The wax is all but gone. Just the wick remains.
There was never really any time to grieve, even from the beginning. Just days after he died, I was making the decision to step into his seat in the Vermont House of Representatives. My first answer was no, I can’t fill those shoes. A day later, I couldn’t think of anyone else who could. The Governor called a few days after that, appointing me to the seat. I was twenty-six and my days were filled with getting up to speed on legislation and buying fancy clothes.
Each anniversary from there was just…busy. I lit the candle but had my hands full. I went from the State House to marriage to full time parenthood in just a few years. There was never any time to reflect. Or grieve.
The flame gives one last flicker. Then it’s gone.
I am so angry at what the cancer took from all of us. The years that my sister missed with him. She was just 13 when he died.
He called her “his gal”. I was “curly top”.
My heroic mother took it upon herself to be our rock, even though she had never had the time to grieve the passing of her own mother just a year before.
He missed my brother’s graduation from graduate school. His wedding. My wedding.
He missed knowing the three most precious boys who all have names after him. He missed watching his grandson pitch his first game. Their first steps, their first amazing words.
My boys want to know him. Gerry asks about his political career and talks about the injustices in the world. Howie told me “It’s too bad your dad is dead. He can’t make Hot Wheels tracks with you.” I know my dad would see the humor and love in that.
I am filled with such anger at the stupid cancer that took him from us. Pancreatic cancer is the same killer it was 13 years ago. A survival rate of just 5%. I’m angry at all cancers. Too many members of my family have been in a battle against this indiscriminate disease: my mother, my mother-in-law, aunts, uncles and cousins. It’s not fair. I hate you, cancer. You rip the innocence right out from underneath us all.
I stare at the candle. I never know what to do with it once it’s out. It seems weird to throw it away, but just as weird to keep it.
I still have dreams about him some nights, thirteen years later. Sometimes I’m talking to him. Sometimes it feels so real that when I wake up, I wonder if the whole thing is just a dream. There is still so much unfinished business between us. So many things I still need to know. So many stories that I need to hear again. I’m starting to forget the little memories and I want to pass them on to my own boys. There is a piece of him in each one of them. I want them to know their history and it’s getting harder for me to remember it all.
I pick up the candle. It’s still very warm.
My dad had these big giant work boots that we used to walk around in when we were kids, like most kids do. In the Legislature, I never felt like I fit those boots. It never felt like it was mine. More like I was there to close a chapter for him, rather than start my own.
Those boots have always been so hard to fill. I think of all the things he was in his short life: a child, a spouse, a teacher, a counselor, a community leader, a first responder, an advocate for children.
The candle stays warm in my hands. But I am shaking.
I realize that I am all of those things now, in my own house. I am still my mother’s child. Tim’s wife. A teacher, counselor and first responder for my own children. And as I find my voice in advocating for my own children, I am helping others in my community speak for their children too.
I have become my father’s daughter. I have found my place.
I am alone with the candle. I can finally grieve.
And now, perhaps, move on.
“When the night has been too lonely
and the road has been too long
and you think that love is only
for the lucky and the strong
Just remember in the winter
far beneath the bitter snows
lies the seed
that with the sun’s love
in the spring
becomes the rose” – The Rose by Bette Midler
November 10, 2011
I really really needed something good this week.
Who knew it would come in the form of homework?
Howie’s first homework assignment was a family project. “The turkey needs a disguise so he doesn’t get caught for Thanksgiving! Return the disguised turkey by Monday, November 14th. “
Knowing that we had a hectic week coming up, I figured we should get this done sooner rather than later. And by “we” I meant my husband Tim and Howie.
I figured that the vegan in the family would enjoy keeping the turkey from becoming table food. In reality, he’s much better at all-things-crafty. And all things cooking, cleaning, folding, etc.
Tim took one look at the turkey and said “I bet Howie wants to disguise him as a racecar driver.”
Sure enough, that was the plan.
The two of them sat down at the table and planned out their turkey costume. Tim looked up pictures of racecar drivers on the internet and together they picked which one to copy. A red helmet. Checkerboard shirt. Green pants (Howie’s favorite color). And black boots.
They went to work.
Cutting out the shirt
Here was a kid who until just recently couldn’t sit down to do…much at all. A kid who couldn’t cut along a line without getting frustrated. A kid who couldn’t even hold a pencil the right way, let alone scissors.
The turkey gets "dressed"
I sat at the table with them, biting my tongue and fighting back tears. They were working so well together, like a finely tuned car. Tim was anticipating Howie’s every stumble and would head it off at the pass. Howie reminded Tim of all that he could do and wanted to do by himself.
"You don't need to draw lines for me to cut the squares. I know where to cut"
Back and forth they chatted about the project, working as a team to decide where the next piece should go and why.
Now smash that glue!
Finally, the turkey was properly disguised.
Hey...where did the turkey go? Just a racecar driver here...move along...
That smile says it all. Actually, both their smiles say it all.
Howie loved doing homework so much, that he asked to do more work at his work table before bed. Could we say no?
Happy Veteran's Day!
It wasn’t that long ago that I thought he’d never write his name, color a paper, or cut with scissors. And I know that it isn’t long before homework becomes a fight and a struggle, and not a joy.
But for right now, homework is a pretty cool thing in our house. Inspired by a dad who knew how to make it fun, and not a hardship. A “father and son thing”. Pure cutting, pasting and coloring joy. In my book, that’s all sorts of awesome.
I’ll take that today.
“There’s a man at my house he’s so big and strong
He goes to work each day, stays all day long
He comes home each night looking tired and beat
He sits down at the dinner table and has a bite to eat
Never a frown always a smile
When he says to me how’s my child
I’ve been studying hard all day in school
Tryin’ to understand the golden rule
Think I’ll color this man father
I think I’ll color him love
Said I’m gonna color him father
I think I’ll color the man love, yes I will” – Color Him Father by The Winstons
November 6, 2011
It’s not you, it’s me.
If I don’t exchange in small talk outside the preschool at pick up, it’s not because I’m standoffish.
If I don’t return your phone call or respond to one of the 500 e-mails in my inbox, it’s not because I don’t want to talk with you.
If I say no to the playdate or birthday party, it’s not because we don’t like you.
If I say yes to the playdate or birthday party and we’re 30 minutes late, it’s not because I’m rude.
If I forget to send the thank you note, it’s not because I’m ungrateful.
If I haven’t read or commented on your most recent blog post, it’s not because I don’t care.
I just don’t have it in me right now. I can’t do the small talk. I can’t respond to the e-mails outside of the most urgent. I can’t get anywhere on time, mail anything on time, or read the articles I want to read.
There’s too much noise going on inside my head.
I’m thinking about my friends who have been without power for more than 9 days, and about how their kids’ lives have been in chaos since the crisis began.
I’m thinking about my amazing friend who just ran her first marathon in New York today. Running with my kids’ names on her back. How proud I am of her and how honored I was to have my kids with her.
I’m thinking about members of my family who are too young to be in a battle for their lives.
I’m thinking about the instant changes we’ve seen in Howie’s plan for school since my presentation. I’m so happy that things are better but know that it shouldn’t be this hard.
I’m thinking about the moms and dads that wake up every morning, wondering if this will be the day when their child will talk.
I’m thinking about my friend who husband is home on leave from Afghanistan, and how happy and rested she looks. I’m thinking about how to support her when he returns to his base.
I’m wondering how I’ll get through the next day, let alone the next week or two.
I’m missing my dad.
I’m struggling with the fact that I’m seeing the “autism” more and more in my two youngest, and I don’t know what that means for them. I’m also wondering if we’ll be adding another diagnosis to the mix for my oldest sometime soon.
I’m looking ahead to January, when all three kids have appointments with developmental specialists.
I’m terrified of not being here for my kids, so much so that it paralyzes me. I don’t like to travel far from them without them in case something happens.
When I am in chaos – when my brain is overloaded – I retreat. I wall myself in and protect myself from what I can’t be right now. For better or worse, I need to keep my kids close to keep me from breaking down.
You have to understand that there are times that I want to be like you. I want to be able to chat about the weather and make playdates on the fly and comment on every awesome blog post that I see.
There are times when I want to be you.
I’m thinking that the best sound is my three boys laughing together. Their sweet voices complement each other in perfect harmony. And I hold on to that for dear life, praying it will never change.
And that’s when I just want to be me.
So please remember:
It’s not you. It really is me.
“Words are flowing out like endless rain into a paper cup,
They slither while they pass they slip away across the universe
Pools of sorrow, waves of joy are drifting through my opened mind,
Possessing and caressing me.
Jai guru deva, om
Nothing’s gonna change my world,
Nothing’s gonna change my world.
Nothing’s gonna change my world.
Nothing’s gonna change my world.” – Across the Universe by The Beatles
November 3, 2011
I’ve written a lot about my “village” – the amazing group of friends that I have who walk in my shoes. The ones that nod knowingly when I talk about my struggles, the ones that make me laugh with a crude joke, the ones that pull me out of bed when I can’t find a reason to on my own.
I know that I’m lucky to have this group. Many special needs parents walk this journey alone. I am grateful every day for the moment that these women came into my life.
I am lucky in another way as well.
I have these three friends, you see. Through some sort of luck, they came into my life and have stayed, even when others have left.
They are not special needs moms. But they still “get” me.
Let me tell you about them. I will call them Friend One, Friend Two and Friend Three.
I met Friend One right after we moved here. Her oldest and Gerry were in the same preschool class. She knew a lot of the other mothers in town and was very outgoing. I, of course, knew no one. Somehow our kids gravitated towards each other in the classroom and became friends. I invited her over for a play date and we hit it off right away. We had similar parenting styles and sense of humor. It helped that she lived just around the corner. We watched each other’s kids, and she quickly became a second mom to Gerry in his second home. Her son and Gerry have been in the same class together every year since the day they met. They complement each other perfectly, as my friend does to me.
She was the first person that knew I was pregnant with Lewis, outside of my family. She was the first person I told that Howie had autism. She loves my kids because they are my kids, and she loves them without judgment or pretense. This year, when things were getting hard at home with Gerry, she invited him over a lot. Helped him with his homework when I could not dedicate the time to it. Her house is Gerry’s safe haven, and it’s mine as well.
I met Friend Two on a warm day in June. Howie was starting his first day in the toddler room at daycare. I was pregnant with Lewis. We had just started early intervention with Howie for his sensory needs but I was feeling ill-equipped as a parent to handle him. I needed a break, and we enrolled him in a three mornings a week toddler program. She stood right up and welcomed him into the room. Her love for the kids in there was apparent. Howie left me with no problem, not even a look back to say goodbye. She took an interest in him immediately and would share with me the “special” things he’d do during the morning. She got him to try watermelon. And fingerpainting. And a whole host of other things that I couldn’t even imagine he could do. She left the program a few months later to become an ABA tech at the preschool. Our paths crossed there again when she was Howie’s aide last year. She “got” him right away, and made efforts to really understand his quirks and interests. We call her “The Howie Whisperer” because she can get him to do things that no one else can.
When school ended, our friendship did not. This summer, she took us out of our comfort zone and we went to the beach for the first time successfully. When I was spiraling down the rabbit hole during the week we had off for Hurricane Irene, she took Howie out to the beach ahead of us. When we arrived, he was sitting in her lap, calm and quiet. When I was in a deep despair over well, everything, she swooped in and sent me and Tim out on a date. She put Howie and Lewis to bed – something only Tim and I had been able to accomplish before. She played board games with Gerry until we came home. In one night, she gave the five of us the attention we needed. She loves my kids for who they are and brings out the best in them and me.
I’ve known Friend Three the longest. We met our junior year in college in a History class. She liked to doodle on her paper as much as I did. Again, somehow, we hit it off. We were both Geography majors. We both had a love for orange food. We both hated the same teachers and loved the same wine. It was a friendship that was meant to be. Over the years we stayed in touch. Months – years – could go by without seeing each other, but somehow we’d still connect. She’s that friend that even if you haven’t seen her for years, you feel like no time has passed. Now, we connect almost every day through Facebook chat as she kicks my ass in Scrabble.
She’s a single mother of four incredible kids, and I consider her my parenting role model. She is the bravest, strongest woman I have ever met. She is my sounding board for all my venting, and we share the most personal of details over chat. She came to visit with her oldest son two weeks ago. We took her son and Gerry out for the night – to dinner and to the New England Patriots Hall of Fame – and it was the easiest night I had had in months. Years. The conversation between her son and mine flowed. We laughed like I hadn’t laughed in a long time. They stayed overnight, and the next morning she was on the floor with Howie and Lewis, playing with their Hot Wheels cars. Not pretending to play, but actually playing. Howie designed a car for her on his “Create-A-Car” app, and she hung it on her fridge when she returned home. And sent him a picture of it. She connected with my kids – all three of them – instantly, again without judgment.
She has a big birthday coming up. A big party. I can’t go due to circumstances beyond my control. Because that’s the way it is with me – always circumstances beyond my control. She’s not mad. She gets it. Without explanation, she gets it.
These three incredible women have pulled me out of the deepest holes more times than they probably know. These friends may not walk in my shoes, but they walk beside me along the path. Just as I would be lost without my village, I would be lost without them as well.
If they ever need me, I’m here. With my glass of wine and my listening ears.
“A good friend and a glass of wine
Someone to say it’s gonna be alright
A good friend and a glass of wine
A little pick me up to get me through the night
We talk trash n’ we laugh and cry
That kind of therapy money can’t buy
Every now and then, every now and then
Every girl needs a good friend and a glass of wine” – Good Friend and a Glass of Wine by Leann Rimes