Wishing you and yours a happy and safe Halloween.
“If you ever see a monster, a monster, a monster
If you ever see a monster, well here’s what you do
Make this face and that face and this face and that face
If you ever see a monster, well here’s what you do
Yell Boo!”
“We shape our tools and afterwards our tools shape us.”
~ Marshall McLuhan
I often talk about how we strive to give Kendall the tools that she needs to mitigate some of her challenges. You might recall the story about our first interaction with her preschool team. At that meeting I told them that I knew that the doctor who had looked into her crystal ball of arrogant idiocy and told us that Kendall was likely to live a solitary life was wrong. I’ll never forget saying through the hot tears on my cheeks, “I know she just needs the right tools. She is so motivated to interact. She just doesn’t have the tools. I know it.” Nor will I ever forget the preschool team speaking up and saying, one by one, “Oh, we have a whole shed full of tools – tons of em. Just you wait.”
Well, guess what? Kendall left that preschool armed with her own little tool belt and she continues to fill that damn thing each and every day. And her latest is a doozey! It’s like one of those multi-purpose Swiss army knives that can do everything but the dishes. It slices, it dices, it cuts a can and then a tomato! But wait, there’s more.
It buys her TIME.
One of Kendall’s most constant causes of anxiety has always been an internal pressure to answer questions without hesitation. Since she has trouble with both receptive and expressive language, this is a Herculean task. Hell, it would be a Herculean task even without the added challenges.
Think about it. If every single time anyone asked you anything you had to answer without taking any time to think, you’d be under pressure ALL THE TIME. Especially if you’re in kindergarten, where you’re being asked questions constantly. It’s confusing, exhausting, and frustrating.
And then, if heaven forbid you answered incorrectly, what then? With no means of retraction or method for correction, you’d very often be put in positions you don’t want to be in.
Think of the simple stuff – you’re playing quietly, enjoying some time to yourself when your Mom comes in and says, “Would you like to come with me to the store?” With no time to think and the feeling of a gun to your head, you blurt a quick, “YES.”
But then you realize that no, you don’t want to go to the store at all. As a matter of fact, you have to go to the bathroom and then you were planning to keep playing in your room where it’s nice and quiet. You really needed some down time away from the demands of social interaction. You’re pooped and don’t want to go anywhere. But now Mama is standing there with your jacket, expecting you to put it on and well, you really have to go to the bathroom and Mama is sticking your arm into the coat and talking about how much fun we’ll have on the ride to the store and – well, there’s a good likelihood you’re going to cry out in frustration now that you feel like you’re in over your head.
Enter the Swiss army knife. One arm of the knife has this fabulous two word tool – ‘I think,’ one has this nifty word, ‘Ummmmm,’ another one has ‘Hmmmm,’ and then there’s the Big Gun – ’I mean.”
Back to the trip to the store – now you could grab your handy dandy Swiss army knife and say, “Ummmmm … I think … Hmmmmm … no thanks.” And all is well. You go off to the bathroom and Mama says, “Ok, maybe later.” (Big sigh!)
Or, should that method fail, there’s a back-up plan! This tool stuff is nearly too good to be true! If you were to say, “Yes” by mistake, you could then say, “I mean no.” and all is well again! (Blessed calm!)
This is HUGE. Kendall’s life is changing dramatically thanks to her new found ability to stall for time – time that she so desperately needs to process the information coming at her, to determine what is expected of her, and to formulate and verbalize a response. All of those things are hard enough to do without feeling that you have to do them IMMEDIATELY.
Day by day, Kendall’s tool belt is filling up. It is such a joy to see her using each and every new tool to find her way through the minefield that can be her day. Kendall’s life isn’t easy, but with every addition to that tool belt, it gets just a little bit easier.
I am so proud of her.
I think it’s about time that my computer got on board with the lingo of my life. How many times do I have to write IEP and deny said computer’s attempts to automatically spell check it before he gets it? I MEAN what I type, Mr. Computer. Yeah, my computer is male. No, I’m not going to explain why. You can figure it out.
When I write documents referring to prep for our upcoming IEP meeting, I mean exactly this- angst ahead of the team meeting that will determine and document Kendall’s current Individualized Education Plan. In other words, torturously detailed preparation that will leave me completely certain that we have overlooked some vital aspect of her education (social? academic? emotional?), endless research that will get me no closer to believing that we’ve struck the appropriate balance between challenge and accommodation, sleepless nights that will get me no further toward believing that we actually have the slightest grasp of what an effective education for our daughter should really look like.
So, Mr Computer, please, please listen up. Stop spell checking IEP. I appreciate your suggestions. Really I do.
But no. I don’t mean imp, though Kendall really is the cutest little rascal isn’t she? When I say, “C’mon, love, it’s time for bed” and she responds with, “I would tickle you instead.” Imp indeed. But no.
I don’t mean ape, though that is where we start isn’t it? Imitation, integration, generalization. One skill at a time.
I don’t mean inept, though God knows that’s certainly how I feel walking in.
I don’t mean pep, though I do play the role of the cheerleader, don’t I? Goooooooooooo Team Kendall! B-E Aggressive! BE AGGRESSIVE! Oy.
I don’t mean i.e. though I do spend half the meeting citing the copious examples that I’ve gathered. For example ..
I don’t mean yap, though heaven and my mama friends know I’ll keep on yapping as long as I need to to make sure my baby has what she needs. You know, when I figure out what that is.
And ripe, wipe and pipe? Well, let’s keep this a family show, shall we?
Point is, if you’re going to be on this train, you’re going to have to get up to speed with the alphabet soup that is our life – IEP, ABA, RDI, SPD, ASD, OT, PT, SLP, BCBA, HWT. Mercy, you get the point. Thank goodness we haven’t gone GFCF. Heaven only knows what you’d do with that one.
Warning, dear reader. If you’re the type who comes here for a daily dose of optimism, feel free to skip this post entirely. No, seriously, just move right along and we’ll pretend you were never here. Please, you won’t hurt my feelings; I promise. I won’t hold a grudge.
Nothing to see here but a whole big basket of ‘waaaaaah.’ I’m cranky. Like really cranky. And tired. If you decide to keep reading, I make no apologies. You were warned.
I’m tired.
I’m tired of my friends losing their jobs.
I’m tired of keeping my possessions in a bag inside my desk drawer in case I lose mine.
I’m tired of politics, both presidential and personal – and the merging of the two.
I’m tired of the talking heads berating half the country at a time.
I’m tired of waking up in the middle of the night terrified of .. something.
I’m tired of watching the market bleed – and everyone wanting to talk about it – all the time.
I’m tired of the involuntary math in my head .. that the 40% of my net worth that has evaporated is the rough equivalent of 5 1/2 years of my career essentially adding up to naught – all that time away from home – for free.
I’m tired of feeling different.
I’m tired of never, ever, ever being able to be on autopilot.
I’m tired of wishing that my love for my girls could be enough.
I’m tired of constantly thinking about the opportunity cost of everything I do. Time with one of my baby girls is time away from the other. Time for myself is time lost with everyone else.
I’m tired of explaining.
I’m tired of preparing.
I’m tired of fighting my weight.
I’m tired of trying to figure out when to use a semicolon.
I’m tired of feeling like I’ll never catch up.
I’m tired of my daughters asking, ‘Why is Mama crying?’ when I thought they didn’t know.
I’m tired of trying to look like I have it all together.
I’m tired of running my life like an ER triage.
I’m tired of feeling like I have to beat the clock.
I’m tired of knowing how short time really is.
I’m tired of needing a vacation I can’t afford to take.
I’m tired of short changing the kids at bedtime because I have nothing left to give them.
I’m tired of trying to convince people to do something – anything.
I’m tired of autism.
I’m tired of talking about it – all the friggin time.
I’m tired of making decisions.
I’m tired of thinking big.
I’m tired of the paperwork – and the details.
I’m tired of staring down a thirteen mile wall and wondering what the hell I was thinking.
I’m tired of knowing that I won’t give up.
I’m tired of being tired.
Or, maybe I just have PMS.
Same difference.
A friend wrote to me yesterday to ask my advice. She recently made the decision to disclose her son’s disability to his sister and she was looking for any helpful hints I might have from my own experience.
I don’t think my advice was quite what she expected.
Just over a year and what feels like a lifetime ago, I had ‘the autism talk’ with Darby. It was not long before last year’s Autism Speaks Walk and it became obvious to me that we needed to address the issue with her.
As we sat over yet another game of Disney Princess kill me now not this again Monopoly, we chatted about some of her sister’s particular characteristics, behaviors and challenges and the fact that there happened to be a name for them collectively. We talked about what it meant to support her little sister (and other children like her) and why we believe so fully in supporting research and advocacy and awareness efforts. We talked about what it means to have autism, or, as I put it then, to be autistic.
Shortly thereafter, Darby began to make connections. A couple of days after our conversation, Kenz got ’stuck’ in a perseverative circle. Who knows what it was after all this time, but you know the routine. She repeated the same sentence for ten minutes straight. Darby looked at me knowingly and said, “Mama, it’s OK. That’s because of her being artistic.”
I couldn’t help it; I laughed. And the poor kid looked so confused when I did. “What on earth is funny, Mama? This is serious! Kendall is artistic! We have to help her. And all those poor other kids who are artistic too. We need to help raise money for them.” She looked so earnest.
And I’m wondering, ‘Does she think we’re organizing a walk to buy paint brushes? Canvases? Easels? For all those poor artistic kids who need our help?
So, if you’re looking for help disclosing your child’s challenges to a sibling, I offer you the one word of advice that I offered to my friend.
Enunciate.
Since the walk was on Sunday, and all of our attention (and Mama’s emotional energy) would likely be focused on all things Kendall, I made a point of sneaking out for an hour on Saturday with Darby. I desperately wanted some Mama and Darby time, and it was important to me to show her that our life is not all about her sister.
We hit our local coffee shop and ordered up a cinnamon scone and a couple of decaf lattes. Yes, she’s seven. Yes, she drinks coffee. It’s decaf. It’s a treat. Shut up.
We carved out a little space for ourselves among the coffee shop dwellers and began chatting.
I love talking to Darby. I could spend hours bathing in her laugh, her raw, unfiltered enthusiasm, her generosity, her spirit, her utter Darby-ness. I am in awe of this amazing little person who calls me Mama.
She wants to know everything. Not a single thing in her universe makes it by her without inspection and dissection. We made our way from “How many boyfriends did you have before Daddy?” (I’ll buy you a pony of you never ask me that again.) to “What did you do with your boyfriends?” (Oh Lord, seriously?) to “Why does the ocean look blue when you look at it when the water is really clear?” (Huh?)
We thought about it for a while and we each offered up our best theories. I loved her attempt to explain that it must be because the water is reflecting the sky, so it picks up the blue. She even offered wonderful evidence – on hazy days when the sky is grey, so is the water. “Get it, Mama?”
I tried to come up with a plausible explanation of my own, but I ultimately did what I always do when faced with anything related to science. I said, “Let’s ask Daddy. He’ll know.”
Matt is Mr. Science. The way I see it, when we got married we each essentially doubled our collective store of knowledge. We have almost no overlap in our individual spheres of reference. None. I may be able to sell ice to Alaskans in the winter, but I can’t answer a science question on ‘Are You Smarter Than A Fifth Grader’ to save my life. He can engineer a weight bearing bridge out twine and a paper clip, but negotiate a contract or pick shoes to go with an outfit? Not so much.
So I commented to Darb that I think it’s pretty cool that her Dad and I have such vastly different kinds of knowledge. ”Don’t you think, baby? That it’s neat that Daddy knows some stuff like science and Mama knows totally different stuff?”
She scrunched up her little nose and licked steamed milk foam off her finger.
“Yeah, I guess. Like he knows math and science. And you know, um…”
Her voice trailed off. As she searched the room for clues, I started to get a little defensive. I know stuff! Lots of stuff! I do!
Don’t I?
And then she said it.
“You know that you’re really short.”
Yes, Dad, I know. You live for these stories. And I deserve every last bit of it.
“You may be right. I may be crazy.”
~ Billy Joel
I can’t say no to Judith. Trust me, if you knew her, you wouldn’t be able to say no either. There’s still time for you. Save yourself. Me? I’m cooked.
It happened before I could stop it. Tell me I’m insane. Actually, don’t bother. I’ve got it covered.
From the moment I saw Judith at the Autism Votes table at the walk on Sunday, my fate was sealed. “Hey, were you serious when you said in that post that you wanted to run a marathon?” she asked, looking all innocent. “Let’s do it!”
I, um, hmm, oh geez. Pretending to hear my phone ring, “Mom, is that you?”
Shoot. That’s not working. “Hey, wow, look over there!!!”
Dang, she’s still looking at me, all cute and earnest and anything is possible and all Judith-y. “We don’t have to do a full one. We can start with a half marathon!”
“Is that better?” I wondered. ”Is swimming only half the whole ocean somehow less daunting than swimming the whole ocean?”
“Think about it!”
Thousand watt smile. Look at her there, all sweetness and light.
Crap.
And so I thought about it. A lot. As I laid on the couch after the walk on Sunday in a useless heap of exhaustion, I realized that I need a goal. I have done so much over the past few months, but I haven’t taken care of myself worth a damn. I feel awful. I’m pushing maximum capacity. Something has to give.
So I googled half marathon Boston and the next thing I know I’m sending Judith a link to the Hyannis Half Marathon in February and saying, “what do you think?” and she’s writing back “Eye of the tiger. Let’s do it.” (No, seriously, she talks like that. I told you the woman was evil.) And then I’m registered and well, OH, GOD. WHAT HAVE I DONE?
Did I mention that I don’t run? I mean, I DON’T RUN. You know that expression, ‘this body’s made for comfort, not speed’? Whoever said that knows me. No one will EVER mistake me for a triathlete. I’m soft. Cozy. Cuddly. Cushiony. I need a highly engineered, steel reinforced sports bra. Lean and mean? Not so much.
But I was on a roll so I went online to research a training schedule.
I found one that looked like a good place to start and went to the ‘beginner’ page.
“Yippee! They have beginners! That’s me! This will be perfect. Maybe there will be advice on buying the right running shoes.”
The top of the page said ‘Profile – you run 18-20 miles a week and can run five miles with ease’
Hmm, I must have scrolled to the intermediate page. i’ll just go back to .. Oh, wait, that is beginner. Sh!t! I’m screwed.
Ok, don’t panic.
Do.
Not.
Panic.
I can run five miles with ease. (Over ten days or so.) But I get the feeling they mean all at one time, so I’ve got some work to do. You know, to get to the point where I’m READY TO START TRAINING. Oh God.
Eye of the tiger. Curse that woman.
Want to join us?
“I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in.”
~John Muir
I underestimated the cold as we headed to Suffolk Downs Race Track for the Autism Speaks Walk on Sunday. It wasn’t breezy or chilly. There wasn’t a nip in the air. it wasn’t one of those mid autumn days here in New England that hints at winter but just as quickly turns back to remind us of late summer. No, it was none of those things. Instead it was just plain cold. And bitterly windy.
Courtney, one of Kendall’s former ABA therapists (and newly minted BCBA – Hooray for Courtney!) had t-shirts made for the walk. In the interest of team unity (and gratitude to Courtney) I didn’t want to bury the t-shirts under layers of winter clothing. So, despite the reading on the thermometer (a balmy 34 degrees as we left the house), I opted against jackets and instead decided to rely on layers of long sleeved shirts under the Courtney’s Crew/ Team Kendall shirts. Oops.
We had planned to meet everyone there. As we headed into the building for registration (which it turned out we didn’t need to do) and to walk through the resource fair (which turned out to be far too chaotic to even contemplate) I could see that it wasn’t going to be easy.
There was a CRUSH of people funneling in through the gates and into the hallway that would wind around to the track. It was incredibly crowded. It was loud. It was chaotic. It was unpredictable. Did I mention that it was loud?
Kendall was on high alert, but she was hanging in as we met up with the first of our friends. We gave her her iPod and I put her on my shoulders as we found our way through the worst of the crowd.
We ran into my very first bloggy Mama friend Judith, who was running the Autism Votes table. Just as I saw her, Kendall yelled out in distress. The crowd was just too much. Judith didn’t flinch as she said, “You go.” A friend who gets it is such a treasure.
I kept thinking that we’d be fine outside. Kendall loves the outdoors. She loves the wind in her face. Outside, outside, we’ll get outside, Baby. Just a couple of minutes and we’ll be outside.
We made our way through the doors and Matt took Kendall on his shoulders as we met up with four more friends. Darby ran off with an older buddy to check out the bouncy house.
I tried to keep it together, but I was starting to feel lost. I went and took Kendall back onto my shoulders. A purely selfish act. I needed her close. I needed to be grounded.
I am always overwhelmed by the emotion, as my friend April put it, ‘of that kind of a day where people come together for a common purpose.’ It’s an incredibly powerful thing. According to one of the walk coordinators, there were 20,000 people there. When you stop and look around the crowd, it is truly awe inspiring and incredibly humbling. That’s an awful lot of manpower working to make life better for our children.
Our friends were amazing – Ramsey and Mike who drove all the way up from New York to be there. Our dear friends, Stefan and Carole who carved time out of their crazy schedules to walk with us. Their twelve year old daughter who won the ‘what will make Jess cry first?’ award when she told me that she has decided that her Bat Mitzvah project will be dedicated to Autism Advocacy. My dear friend, Megan, who single handedly juggled her three kids schedules so that she could be there with her sweet little daughter. You all make our lives so much richer for your friendship. Thank you.
To all of those who gave your hard earned money, thank you. Because of your generosity Team Kendall was able to contribute over $20,000 to the $1,000,000 (and counting) raised that day. I am grateful beyond expression.
Kendall squirmed off my shoulders halfway around the track. “Mama, get me warm,” she said as her little teeth chattered. I tried, but the tailwind was becoming a headwind as we rounded the track. I held her tightly against me, but it wasn’t enough.
“Boots, do you want my scarf?” (our neighbor’s loving nickname for her, from her favorite Dora character)
“Kendall, take my hat.”
“Kenz, you want my vest, honey?”
“Here, little one, take my fleece!”
One by one, our friends offered up their clothes. They dressed my baby in a colorful tapestry of loving warmth. It said it all.
We made it as far as we could until Kendall just couldn’t do it anymore. We found the quietest place we could, just inside the doors, away from the madness outside. Everyone finished the walk and we did our best to cheer them in.
On the way out, my dear friend Megan enthusiastically said, “Same time next year!”
And it all came together – why I felt so empty, so lost, so sad on such a hopeful day.
BECAUSE WE WILL NEED TO DO IT ALL AGAIN NEXT YEAR.
Because the fight is not a sprint, it’s a marathon.
Because I felt like I was running as fast as I could.
Because my friends still long for words.
Because advocacy doesn’t get to rest.
Because, as much as I know it, I still have to be reminded that Kendall won’t outgrow Autism.
The walk was beautiful and wonderful and fruitful and rewarding and fulfilling. And it was hard. I laughed heartily and I cried quietly. I was overcome by emotion. I was at once exhausted and energized. We were surrounded by the selfless love and unflagging support of an incredible group of people.
In short, it was a perfect metaphor for the whole journey.
People often ask me how I do it. As in, “How do you do it all?”
Well, usually my answer is, “My husband makes dinner.” Seriously, that’s BIG. The fact that I find myself inside a grocery store maybe once a month and the additional fact that I get to come home from work and plant my butt at the table without a second thought about what we’re eating, well, my friends, it contributes a lot to “how I do it all.”
However, even so, sometimes the answer to “How do you do it all?” is “Not very well.”
Case in point: the following e-mail that I sent out in a panic on Saturday night to all the parents of the children in the choir.
All,.I am sooooooo sorry, but as it turns out, we won’t be able to make it to choir tomorrow, no less get there early to talk to the kids..I feel terrible, but I had my dates mixed up! Tomorrow is the day of the Greater Boston Autism Speaks fundraising walk. We have been working for months to raise money for Team Kendall (well over $20,000 already!) and there’s no way that we could miss it..I am so grateful to all that planned to get there early tomorrow, but unfortunately we’ll have to impose even further by asking to do it another time..Thanks so much for your understanding and hopefully your patience with this scatterbrained mom..Warmly,.
Jess
Bach gave us God’s Word. Mozart gave us God’s laughter. Beethoven gave us God’s fire. God gave us music that we might pray without words.
~ author unknown
Last year, I was walking down the hall of Kendall’s integrated preschool after a team meeting. I was hurrying off to work when I nearly bumped into a mom taking her daughter to class.
She was pulling her in a wagon that contained far more than just the little girl. She had what appeared to be some kind of breathing apparatus, its various tubes snaking out of the wagon in different directions. Whatever space would have been left was filled with a coat, a scarf, mittens and a backpack.
As they passed, a mitten fell out of the overstuffed wagon. Without a moment’s hesitation, the mom, whom I had never met, asked me to grab the stray mitten. She didn’t stop moving or wait for me to catch up, but continued on her way and nonchalantly added, “Just throw it in the wagon. Thanks.”
Of course I did what she had asked, and she went about her business without looking my way again.
It was a small interaction; surely one that she never gave a second thought to. But that tiny moment of grace is still with me four seasons later. The ease with which she had solicited my help took me back. I was in awe of the way she had approached a total stranger and without a second thought, asked for a hand when she needed it. Surely, there was a huge lesson in this for me.
Ever since childhood, I have been annoyingly independent. “I do it myself,” I told my parents as they offered guidance and assistance. I have always been bound and determined to take care of myself. To this day I remain hell bent on ‘doing it myself.’ I can just see my husband’s smirk as he reads this. Yuck it up, babe.
But once in a while, the wagon spills over. Sometimes, we all need a hand.
Like her older sister, Kendall loves music. When she sees a live band, she makes her way into the middle of it. She stands in the center of the instruments. She comes alive with the sounds and the vibrations. When she hears singing, she joins in, whether or not she knows the words.
Darby has been singing in our children’s choir for a little over a year now. She loves it. She loves the singing. She loves performing for the congregation. She loves being with the other kids. She sings the songs in the car and Kendall sings along.
I cannot think of a better way for Kendall to feel like a part of our congregation than by singing with the choir.
It won’t be easy. There’s a lot going on. The choir director is ambitious. She likes to choreograph movement and orchestrate complicated arrangements. The littler kids tend to get confused. Even Darby doesn’t always remember what part she’s supposed to be singing or where she’s supposed to be standing at any given time. It can be loud. It can be chaotic. It can be confusing and unpredictable.
But Kendall wants to sing. So sing she will. I brought her to her first rehearsal last week.
She needed breaks – a lot of them. She cried out a couple of times when she was overwhelmed. We walked the halls. We got fresh air. We came back.
She walked up to kids, got a little too close and said, “What’s your name?” over and over again, often while they were singing. Not one of them ever answered her.
She covered her ears when they blew a train whistle that will be part of the song. One little boy looked over at her with a furrowed brow.
When we left, I asked if she liked singing with the other kids. “Yes I did.”
I asked if she’d like to do it again. “Yes I would.”
I turned the question on its head and asked it seven ways to Sunday. No matter how I phrased it, the answer remained the same. She wants to do it again.
The choir director sent the following e-mail today.
I would like everyone to come a bit earlier this week. Jess Wilson will be talking to the kids for the first 5-10 minutes about Kendall Wilson, our newest choir member. Jess will explain a little bit about who Kendall is and why her behavior is sometimes different than the other choir members. She feels it would be easier for everyone if they knew a little bit about what to expect.
This isn’t a wagon that I can pull alone.
I am so glad that the mom at the preschool helped to show me that I don’t have to.
Powered by WordPress.com
