Saturday, October 8, 2016


Pass or Fail

Dan has a D in his Health and Fitness class! YES. This makes me happy. Let me explain why.

I got a notice today through our school district's automated parent access system which notifies us about grades and missing assignments. Most of the time our weekly emails include a scattering of missing assignments and the occasional alert that our older son needs to work a little harder. 

Dan's grades are usually straight A's. There are never any missing assignments or test scores.  In the few subjects that he actually is truly graded on, he tends to meet the criteria, because his special education teacher is good at targeting and meeting his academic levels, and we do the minuscule amount of homework that comes home (spelling words and adapted projects). 

Dan participates in three "General Education" classes in middle school with a 1:1 assistant. Science, History and "Health and Fitness". For  English, Math and Reading he is in the special education classroom.  This is the inclusion model of his school. 

I usually snicker that my son can probably graduate with a 4.0, which is yet another perk of autism, It's like never having to wait in the rain at a random school bus stop because the short bus comes straight to our house, baby! Haha, you neurotypical families, standing there in the Pacific Northwest rain, we win at bus riding. 
--I like to look for the silver linings, ok?
Dan usually has a 4.0 because most teachers don't know what else to do.

This inclusion model is newish for most of his Gen Ed teachers, and there has been some discomfort in how to manage his participation. He has a 1:1 assistant with him at all times. He does not speak. He makes loud noises sometimes. He has behaviors. It is hard for his teachers to gauge how or if he is participating. It is hard to adapt assignments, and it is hard to determine exactly what he is getting out of inclusion.

But I know, and his special education team knows, that amid all the stimming noises and wiggling, he is absorbing concepts, hearing his peers process, and learning. I'm not about to let him miss out on the experience of a hands on science lab when there are so few of those opportunities in this world that he will be included in. We do what we can. His team adapts in the moment, condensing quizzes, allowing augmentative communication and insisting that the concepts are getting in there. They help, probably too much, in writing answers to questions and turning essay answers into fill in the blanks. He surprises us, sometimes, but he is given the opportunity to learn, just like any kid.

Inclusion research also shows that having kids with special needs mixed in with gen ed classes benefits both the special education students AND the general education students in a number of ways. Despite the stigma and view that our students detract from learning time and instruction, they actually can enhance the process by helping other kids model, process, teach and therefore learn. Not to mention that this models what will happen in the adult work environment, ideally. 
Instead of our kids being sequestered in an "institution" type room at the end of the hall, they are mingling with the rest of the world. Seen, not hidden, where the scary unknown behaviors and appearances become familiar and thus less scary.
This means as adults, typically developing people who have participated in inclusion model programs in schools will be less resistant to hiring, mentoring, managing and providing opportunities to their peers with disabilities as adults. Because it's the norm for them, less intimidating, less alien. They have existed together throughout the lifespan. 
 In the long run, this saves us all money and grief, as adults with disabilities lead contributing and productive lives, paying taxes, earning fair wages, and having happy, healthy community connections. --Instead of sitting on a couch in their elderly parents' basement, or in an institution as in previous decades; Alone, dependent. (This visual is what keeps me up at night.)
So I push at least 50% inclusion for Dan. It's a long term plan. 

So why am I so happy that he was given a poor grade in one of the classes he is supposed to be treated fairly in and adapted? Because to me, this shows someone is actually paying attention. His teacher sees him as a real member of her class. --Not just the kid she's tolerating because she has to. She sees him as someone capable of doing better. Of being a contributing member of that world. Of doing the freaking work.
She has expectations for my son.
Teachers usually just give Dan an A whether he's done the work or not. In fairness, this is probably due to many many years of upset parents reacting to a grade their child has been given by blaming the teacher for not accommodating a disability. I get that. 
I get that most parents would be steaming when a child like mine was given a poor grade. How dare they judge him, when he is so clearly impacted and can't do the work? He is on an IEP! I have heard this many times. I get that, too, I've been there with my other kid. It's hard, and a constant balance between pushing the kid and making sure he's getting support if needed. 
But non-verbal individuals are so often judged so poorly, with so little to contribute,  as "low functioning", with the assumption that communication or behavior is the only indicator of cognition.

Look people, I know he doesn't earn an A in science all year. Come on. I would love to see a B or C for once, if he did a crappy job participating that day. Just to show you are paying attention and that this whole inclusion thing isn't something you just tolerate to make us happy. Like a pat on the head for delusional moms. I'm not stupid. I know.

But I tend to rely on what I also know for sure:
My son picks up concepts, he is listening. His receptive language skills are good when given repetition and processing time.  
When he can communicate his thoughts, they are complete, thorough, detailed, and most of the time, beautiful.
I know he's lonely and wants to be with his peers, even if he can't navigate how to interact with them.
And I know he can meet expectations that most people wouldn't even dream of for him.

So I'm not about to let him miss out, or let them miss out on him. 

I don't know why he has a crappy grade.  Maybe he's behavioral or too loud and stimmy and she hates it. Maybe he doesn't do the work. (Maybe she remembers his brother also didn't do the work.) Maybe he refuses to do push ups. Maybe it's a typo. I don't care. 

On Monday, I plan to go in, find the principal, the special education teacher and the H&F teacher. I will hug her and thank her. I will ask her what any parent would ask her. 
"How can we help him get his grade up in your class?"
Like any parent, of any typical kid. 
Do you know how how rarely I get to say things like that? I relish it, every time. I let the words roll around in my mouth because they feel so good.
Like any parent would. I'm not missing out on THAT opportunity.

I'm hopeful that we will be able to use it as a teaching moment;  a tool for increased awareness and understanding of what inclusion is really about. It's not a black and white concept or formula that can be defined by numbers of minutes on the back page of the IEP spreadsheet. 
It's not the same for every child, teacher and subject. It's a fluid, changeable process, that has to adapt with the child. 
--Kinda like development, really. Kinda like learning. 


P.S.
Ms. S, if it's a typo, I don't want to know. Just go with it. 






Thursday, June 30, 2016

Ideas for summer play


Just a few ideas to follow up on my summertime post from a few weeks ago. 
Here are some ideas to fill those days where your kiddos are bouncing off the walls and it's really hot out and September seems eons away...

•    You don’t need a therapy room devoted to mats, balls and swings, there are all sorts of activities to get the same input. Try games such as Twister, sack races, whiffle-ball in the yard, or even a trampoline –the mini or large kind.

•   Hiding under cushions, making forts, obstacles or crash pads in the living room is always fun.  Rolling up in a big blanket together to make “body bagel dogs” or under a bunch of pillows to make “human fruit salad” on the couch or floor is always fun. “Toss” the salad by having the child pile up with pillows and stuffed animals on a big blanket, then you gather up the corners of the blanket and shake and pull them around. Then change places. Be brave! Wrestle, roughhouse, break a sweat together. Put on fun music and dance.

•     If you have a/c on very hot days, play in the kitchen. Make fruit kebabs or no-bake cookies. Baking bread can build arm and hand muscles getting movement and heavy work. Stirring the dough, kneading, using cookie cutters and rolling pins are all great for this. There are even quick breadstick mixes in the grocery store. Make breadstick letters and then try different dips. Put on favorite music in the background.

•        For picky eaters, get that vinyl tablecloth out for a picnic on the porch with the lure of water play. Throw both new and loved foods into a bin of water; watch, touch and talk about what happens. Do those foods float, sink or dissolve? Do they do the same in our mouths? Watching what happens can help reduce anxiety about how it feels in our mouths where we can’t see it.

·        Freeze small toy “prizes” in ice and chip it out with tools and basters filled with salty water. Lots of work and a prize at the end to play with! The Dollar Store is your friend.

•   Go old-school! Get a little spinning sprinkler that attaches to a hose. (Dollar Store again) The combo of spinning water and sun is an awesome, stimmy visual.  Throw a plastic tablecloth down by the sprinkler, add soap and turn on the music for some slippery dancing or add a beach ball and some shaving cream.
         
·        Speaking of the Dollar Store, that’s a great place to practice social skills and money handling skills for an air conditioned, cheap outing. --And seriously mamas, I totally promise yours will not be the loudest or most disruptive child they’ve ever seen in there. You know I’m right.

•    Visit a u-pick farm. Great for tactile, fine motor and heavy work. Squish those peaches! (the ones already on the ground and mushy!) You know you’ve always wanted to do that.

·        Check out the many free outdoor summer concerts in the area. There are lots of kids at these, dancing away. Music is a great stim!

•        Find a log and help kids pound big nails in a pattern with a hammer, use a screwdriver to put screws in, and then take it all back out. Kids love real, grown up tools.  For older kids, woodshop and mechanical activities are awesome for fine motor, visual motor, and sequencing skills. Not to mention following directions and reading plans –challenging for many of us!

•   Crafts are great and there are a million on the web with any kind of theme you want. Dinosaurs, ladybugs, garage doors, Blue’s Clues, whatever makes your child go up on the toes, it’s there.  
--There’s a DIY guide to making a Star Wars AT-AT walker planter on Pinterest-- For REALS people!
 Google  “(whatever theme) crafts” and you’ll get tons of things your kiddo will be all stimmy for.

•        Ask for help with dinner. Not only does cooking provide a sensory bonanza, but it introduces kids to all the types and layers of foods in their lives, and exposure is a huge part of building increased food tolerance. Look at measuring rice, chopping carrots, mashing potatoes, using tongs to flip burgers, toss salad etc. for upper extremity and fine motor strengthening. Eating with chopsticks can be fun.
***HINT:  Go old school again –put away that electric mixer for extra muscle building, our grandmas didn’t use them and their cookies and pies were amazing!!!


  •  You can use pretend food —or play-doh—to achieve the same movements/activities during play if your kiddo really likes the cooking theme but you surprisingly don’t have the desire to cook all day.
•        Find what your child likes to do and adapt it to build his strength and ability. Repairing bikes or cars with a parent or building wood projects are great for a left-brain kind of kid. Art/pottery classes at the community center or YMCA are also good for your creative one and staff usually will adapt if you prep them.

•   At home, kids who are motor driven and sensory-seeking really benefit from activities such as climbing at a rock wall gym,  a jungle gym or even *gasp* a tree! Hiking, biking, gardening are also great to provide movement, heavy lifting, digging, etc. Martial Arts, Gymnastics and swimming lessons would also be wonderful options.  Even fishing requires postural stability, shoulder, arm strength and bilateral coordination. Kickball is a team sport that anyone can play!

•        Of course, there’s always housework. You never run out of it. Kids never guess that folding the laundry or helping you carry the heavy laundry basket up and down stairs is therapy!
--And yes, bribe. I need a bribe to do housework myself, so I believe it goes for everyone. Pay them in money, screen time or trips to the Dollar Store. 
Mopping and vacuuming are more fun with music. Gardening, weeding, raking and watering also count and getting dirty is ok when you are doing these!
Washing dishes, cleaning the tub, carrying the dog food in or groceries from the car for you will not only build strength and be organizing through heavy work, it will make them feel good about helping you do something you have a hard time with.

•        Another alternative is just plain strength training. Go work out with some dumbbells together, swing and climb to the top of a rope swing, or take a nightly walk. Get a large therapy ball and have him sit on it and maintain balance, lift it overhead ten times. Toss it back and forth, kick it, get creative.

If you can’t find anything that looks like it’s going to work, just keep trying, remember repetition is key to building tolerance in those little rigid minds! 

You can’t go wrong with any activities involving:
Heavy lifting, pulling, pushing, climbing; Using one’s own body weight to propel themselves; or manipulation of tools, crafts, food or objects.
It doesn’t need to feel like a chore or “therapy homework”. Make sure it’s something your family can take on without setting you all over the edge.
Find what interests your child, run with it and above all have FUN! There are a million different ideas out there on the internet: Pinterest, Sensorysmart.com and Thealertprogram.com are great resources and have a ton of ideas.

Everyone needs a little down time to let their brains rest and integrate, so remember T.V. time is totally okay for a little while mamas! Don’t beat yourself up for getting a little break here and there, life is short, and you need rest to be creative too, right? Go ahead and pop in that Weird-Guy-at-a-Construction-Site video they love and sit down for a minute. 

Stim on, my tribe, stim on.



--Joanna Blanchard, MOTR/L
Everybody Stims Pediatric Therapy
Copyright 2016 Everybody Stims, LLC


Saturday, June 11, 2016

Autism Awareness Cards or Go Namaste yourself.

I've never made cards like this or handed them out before.

Thinking about it as we leave our sweet, safe little Vancouver community nest to travel a bit this summer, I'd like to be uber-prepared, just in case.
Starer-ers, snickerers, and pointers are not my favorite people but I usually ignore them or try to give them a straight on for reals, Namaste-yourself-I-see-you-and-I-still-love-you smile saying we are just fine thank you. Happy, even.

However, as we venture far out into areas unknown in challenging new ways, I want to make sure Dan has backup, and if I don't have the emotional (or sleep) resources to bring forth my namaste-self, then I might need to just hand out a card --really it would be to make myself feel better.

But families, just so you know, I have mixed feelings about these things...

Part of me is like; "It's no one else's business and effing back off if you are disturbed by my obviously struggling child or I will shank you." We're here, we're weird, get used to it. If your child is being rude that's not my problem, really, why does it become your business when mine has a meltdown?

But the other part of me is like, "Well, I get that it's weird, and sometimes watching this stuff is scary if you've never seen it.  --So you should probably learn about it so that the next time you run into this you aren't going to be a judgy jerk. Here is my helping you do that."

I don't want the extra attention, and I don't want to make excuses.
Maybe I just know I'll be tired at some point and not have the energy to fight for my son's dignity in the way I like to best, modeling with grace and pride, humor and love. If I have a card to hand out maybe it'll keep me from being snarky back, which is not what I want to do.

Anyway Stimmers, I'm prepared for the worst, hoping for the best! Either way we are doing this thing.If you print out double-sided they're a little off, but close enough for horseshoes and autism.

Autism Cards PDF

Please feel free to share, print and use, and please let me know what your experiences have been with this kind of thing.

 or cut and paste:

https://drive.google.com/open?id=0B_GdNeCgDvH-dWJuREM0em8zY00



Friday, June 10, 2016

Those No Good Down Low Stimmy Summertime Blues

Every year, after the initial excitement and novelty of mornings with cartoons and pajamas wears off, usually just after the 4th of July, I often get the question:  

“Help! What can we do to fill up our summer days?”

Good question. So many of our kids enjoy highly structured lives. School, therapies, doctor appointments, and activities typically fill our days. Often we feel we have to fill the empty spaces during summer months to keep our kids from stimming the day away and getting very bored or behavioral.
However, we can only go to the zoo or Children’s Museum so many times before we want to poke our own eyes out, so what to do?

These days, spontaneous individual play is a challenge for many kids, but it can be doubly challenging for us, especially when nostalgically thinking about the “typical” summers of our own childhoods. Those long, unscheduled hours of grimy, sepia-tinged adventures we  remember, glorified in movies like “The Sandlot” with sleep overs and camp outs. 
Maybe we even get a little down thinking that summer is will never be like that for our kiddos and that we just have to white-knuckle it until September.

--Oohhh my mama friends, I beg to differ! 
Summer can indeed be fun, spontaneous, and unstructured, just with our own stimmy flavor! 

Here are some thoughts to chew on before you Netflix "Stand By Me" again.  

Summer is full of opportunities we don’t have time for in the school year.

Most seasoned Autism Mamas will tell you they have had their kid’s summer fully planned and color coded on the calendar since April 1st. 
 -- You see, it’s for our own sanity after several cranky, sad summers of hot, sweaty, crying afternoons at the zoo.
Many families cope with the change by increasing therapy hours, scheduling camps and getting more involved with activities, and this is great.  
But don’t forget, summer can also be a great time for much needed rest, down time and open-ended opportunities.

Next post I will give you some activity ideas, but for now, remember these things and be nice to yourself:

Unstructured play time is necessary for growth, too.
It’s difficult for many kids to play by themselves with no guidelines, friends or rules. It can be agonizing to teach this to a child on the spectrum who has difficulty playing in general.

You can try some open-ended Floortime-type play. What’s your cutie stimming on? What’s his/her passion? Can you go join in? Maybe there’s more play happening than it looks like at first and just maybe over time you can expand it. A fascination with spinning things can be encouraged by spinning wheels on toy trucks together, eventually modeled to push the trucks, and some day perhaps you’ll see your child playing with cars independently.

Or maybe, you just build your relationship by just joining your kid in their own beautiful world. My philosophy is that the relationship comes first, then functional behavior, so get on the floor for a while, join them, and before you know it an hour will have passed. They will love you for it.

  Is stimming all that bad?
Give your child a little extra time to just “stim”. We certainly did when we were kids: We were looking at clouds, counting blades of grass, riding fast down that big hill and feeling the sun and wind on our faces. Yes, mamas, it was more sophisticated stimming than flapping hands at the CD player, but it was still stimming in a way. See if you can re-frame a stim your child likes to do as a play activity.
Oh Sand, how I love that you are so wonderfully stimmy. 
Do they like to swing? Let them swing without stopping to see how long they’ll do it (and check out if they are super organized afterwards!). Sifting dirt through the fingers and watching it float on the wind? That’s someone’s version of a mud pie. Can you add water to keep it novel? Can you join in without bringing your own judgments? Yes you can. Find out the secret that makes it awesome and it will open doors for you both.

Screen time doesn’t have to be all bad. We all need to veg some times. If you feel like it’s too much, have the kiddo take a break during a commercial to have a tug-of-war, or stand on a bosu-ball or trampoline during TV time. Lying stomach down on the floor to watch TV or play a game works on getting input to the body and pressing up through the elbows and shoulders, like the cobra pose in yoga. That way you have less guilt but still can get dinner cooked!

Bottom line; our kids work hard at school. Everyone needs a break. If you can handle the stimming or modify it so both of you can be satisfied and it feels somewhat like functional play (hey, dirt is great tactile input and crumbling it helps develop arches of the hand) go with it. 

 Use the extra time to do things you can’t get to during the school year.
No school means skip the shower and get dirty outside first, then come back in and practice bathing and dressing skills mid-day. 
As a bonus you’ve already prepped with outdoor sensory play to support fine motor and focus for these challenging tasks.

My mama friends, this is the time to learn about shoes and socks; When there is no bus driver honking at you! Take a breath, sit down on the floor, and give your child the space to practice and problem solve without the pressure of time. Put on some music, take a deep breath, and give them time to figure it out! 

You can’t go wrong with sensory play.
Give your child a chance to find something they just love to experience but that also is a bit of a challenge and run with it. 
During the summer months we can actually take time to do the things we love to do for hours, rather than the 15 minute snatches of pleasure allowed during "breaks" allowed at school. It will seem like heaven to be allowed to swing/crumple/cut/spin long enough to finally reach their internal sensory threshold! 

Give the space and time to process;  Prep THEN push!
Don’t be surprised if you get resistance to some or all of the above. Your child may prefer to stim alone, so start in parallel. Entice them with your body language that you are having the most fabulous time with your own sand pile. They might want to join you, they might move to another pile. Persevere, parents!

Remember that open ended activities can be anxiety producing, so this is a great time to practice conquering anxiety and letting them know that you will, indeed, wait them out 
“We will go do that when we finish here, for as long as it takes…Don't worry, I can wait.” is one of my favorite obnoxious parenting things to say. 
Just make sure you try to be patient and calm when implementing so they don’t pick up on your stress level. (I know, easier said than done. Fake it ‘till you make it, peeps. )

Prep them (with a social story etc.) and help them follow the activity all the way through, especially when there’s no pressure to be anywhere next. That’s a perfect time to slow down, breathe, let them process their anxiety and hesitation, and then WIN the battle against it!

In the end, if that one activity is all that you get done that day but you conquer it, then THAT is the best therapy session you could ever achieve. --Not in a clinic, not at a table, but living  the life you and your kiddo are meant to live together.

Stim on, families, stim on.

Next post, I’ll have more concrete activity ideas for your days at home or out and about!

 --Joanna


Monday, August 18, 2014

Let Go or Be Dragged.


"Let Go or Be Dragged."
(Attributed to a Zen proverb)

As the youngest child in our family gets ready to attend middle school in the fall, I want to post and re-post this video until everyone sees it and internalizes it:  Ethan and I put this together one day, years ago when he was home sick in the third grade.

(https://www.youtube.com/watch?v=W6Zs8DS2wBE)


Despite this big, looming transition in September, this summer has been one of our best ever. But it has also been one of the hardest.

I find myself internally clinging to the last weeks of carefree, total abandon that comes with having to answer to no one about my children's participation in school. No homework due, no missing art fees, no IEP meetings, no phone calls about missed meds, no emails about what to do when a new behavior crops up, not even a measly picture day reminder slip.

Freedom. 

The break is welcome and happy, the kids are tan from playing outside and snuggly with sleeping in daily. Yet I have an underlying feeling of dread that casts a cloud over all of this fun.  
Normally by mid-August I am so ready for the short bus to come on up the drive and start a comforting routine. However, this time I am not.

In fact, I'm sort of a mess.

I wake up with sore jaw muscles that come from clenching my teeth as I sleep. I find it hard to focus on my work. I cry easily and am cranky with family. I'm not living in the moment as much as I am holding on to it as tightly as possible before things have to change.

Just a few weeks ago, we hosted a small party to say thanks and goodbye to special education staff at Dan’s elementary school—some of whom have worked closely with us for the past nine years (since Ethan was in preschool). Now that we’re moving on, my husband and I wanted a chance to convey our gratitude, pamper them with gourmet food and chat informally outside their professional "roles."

I was also hoping it would help me feel better. 

It was a lovely evening with some of the nicest people I will ever have the chance to know. When they arrived, Dan started running happily around the living room. When his teacher left last, he quietly watched her car disappear down the driveway. And then he whimpered, leaking a few tears. And then so did I.

I thought: "Who will ever love him like that again?" This staff and I have been through so much together. We've cried on hard days and celebrated so many milestones, years of notes, pictures, stories, and laughter—like a family. I am sad to say goodbye and scared to let go.

I worry that middle school presents opportunities to practice "grown up" social norms, which is important but challenging as even typically developing kids face frequent drama and heartache during this time of life when they are figuring it out. (Do you remember middle school? You couldn't PAY me enough to go back there.) How on Earth will Dan survive with any social success? That video was really cool in 3rd and 4th grade classrooms, but will it have the same reception with the older kids? Will they be more worried about "fitting in” or more sophisticated at hiding cruelty?

And I worry that new staff and teachers won't "see" Dan for who he is. Will he be able to become part of the larger community as he was in primary school? Will he be included and appreciated in his home room AND his special education room?

I also am beginning to realize that my ambiguity about this transition is about so much more than moving schools, leaving old friends behind and new challenges.

It's about beginning to let go of our "little boy". The new school seems daunting, so much less nurturing. I know this is appropriate and that it's time for Dan to need less nurturing.  The things that are acceptable and maybe even “cute” in an elementary school kid are often "weird" and unacceptable as kids approach puberty. We must begin to learn to see Dan as someone who belongs in this new setting and not try to protect him from all of the world's scary things. This is part of growing up for all of us.
It's just so much easier to think of having him as a child forever.
We know this life. We are (most days) competent at this life. But life with a teenager or adult with Autism is uncharted for us. This transition is just the beginning, a symbol of the impending future. How will I make that transition as more questions about Dan’s future emerge?

As summer progresses and I continue to lay awake nights, I talk to a friend who can relate, as her now-teenager with autism is moving into high school this fall.
"We’ve had several people along this 'journey' that we've had to say goodbye to." Kari texts in response to my sad little text bubbles.  "Feels like a break up."
As usual, she nails it. It totally feels like a break up. A type of deep ache I haven't felt in a long time.
And with a breakup don’t we always wonder how a new relationship could possibly compare to the one that has just ended? Will I be able to build meaningful relationships with new people, teach and then trust them to really “see” my kid?
Kari knows the amount of emotional energy and time it takes to forge ahead with a new group of people who don’t know Dan. She texts: "Dan's got the magic. The new people are gonna fall under his spell too. " We've found that we always seem so crazy to people at first as we impatiently wait until our child chooses to show his internal brilliance. The look on their faces is always vindicating when it happens.

No matter how much angst I feel, I have to move on, as does he. I have to accept that he is growing up, and that things will get harder before they get easier and that we will run into misunderstandings, bullies, puberty and heartbreak. I have to let go and since I'm not the kind of person who can stand back and be hands off about it, I'd better just put my big girl pants on and get going.  And I will.

But for the moment, how can I keep this from killing the rest of the summer?
I go back to the breakup feeling. I think back and remember what I've said to the multiple 20-something sitters and therapists who've cried in my kitchen:
Take some time to be by yourself.
Journal, play, fill your time with meaningful work. Heal.
Then go out, open up your heart again, because it’s totally worth it.
Don’t compare. 
Learn what YOU need in a relationship and be honest about it.
Find out what they need.
Don’t rush it.
You’ll know when it’s right, it shouldn't be too hard to make it work.

I should take my own advice.
I'm starting by writing this. I’ll spend these precious last weeks playing, and being by myself when I can. Then I promise to give it time and be honest as possible about what we need to make it through the next year. I will try not to compare. I will ask what they need. I will be patient and I will open my heart to new, awesome people in our lives and the changes coming for Dan.
I’ll be thankful that this is just one anxious mom's "first world problem", and recognize it as a rite of passage for many, many parents out there. I will remember I’m not alone.

We will be all right. We’ll rebound. 

( a shorter version of this blog post is also on Spectrumsmagazine.com)





Tuesday, August 5, 2014

Helen Keller and Annie Sullivan; Who's next for me?

These two. They just blow me away. With their two brains working together they were unstoppable. 
Thank you, Annie and Helen. You showed 'em.

Helen and Annie


When I was 16, I auditioned to be Helen Keller in our high school's production of  The Miracle Worker, a beautiful three-act play by William Gibson based on Keller's autobiography: The Story of My Life.

It literally changed the path of my entire life, thanks to a brilliant teacher and director, LouAnne Durham, who could both 1) Manage to organize the circus of hormones called Teenagers in Drama, and 2) Create something beautiful out of our chaos using a great script, her own skill, extreme patience and sheer tenacity.

 She made us do more than just recite lines and learn blocking. She talked to us about the relationships between characters. In preparation even before practice she challenged me to experience life in different ways to get a hint of what Helen may have felt. She had me wear vision occluding goggles to navigate the high school halls during practice, watch T.V. with the sound off, load the dishwasher at home with my eyes closed. She also had an O.T. visit during practice one night to teach us finger spelling and talk to us about working with children with disabilities.
"This is it." I thought that night sitting in the front row on the creaky, faded, patchy velvet seats of the Little Theater listening to the occupational therapist talk. "That's what I want to spend my life doing."

And so I did.
It's funny how life comes in circles. I've been several characters in that play now. As an awkward teen I played Helen, stumbling blindly and impulsively to adulthood. Then fresh and green out of grad school I worked in a school with a little girl who was visually impaired. She hit me during lunch, poured her milk on my new sweater and it went right up my sleeve as we struggled to sit at the table together and eat with a spoon.
"Wow!" I thought. "This is just like Helen and Annie! I've made it! I've come full circle!"

Yeah, it's funny how life comes in circles and bites you in the butt sometimes coming around that back curve. Now much of the time I'm playing the role of Kate Keller, Helen's mom.
Kate's character in the play is anxiously protective of  her child but desperately trusts in Annie's --and Helen's-- abilities. She finally learns to relinquish control of Helen's life and let someone else be "that person"  who is the bridge to the world for Helen. As she internally struggles, she gently and firmly leads the rest of her family down this path, which they are totally guarded against for fear of being hurt once again.
Ultimately, no one believes in Helen more than Kate, who didn't take no for an answer when "experts" told her not to bother. She appears wispy and emotional, fluid and meek, but is in reality a quiet rock as Annie struggles, Helen rages, James skulks and "The Captain" blusters around her. (Aunt Ev offers advice, a lot.) She enables the rest of the story to move forward, even though it breaks her heart.
In theory she knows what Helen can be, but in practice it is scary for her to let her child struggle to get there.
As I learn to let go and trust those who can help Dan to be everything he can be, I have to relinquish control of some things. Okay, Lots of Things.  So now I aspire to be Kate. She was a brave lady and a quiet leader.

 I can't say that I've ever really been or ever will presume to be an Annie Sullivan. I've helped a lot of kids in my career so far, but that relationship, those two together is a mighty force of nature. Watching the two of them, so brilliantly play off of each other, so aware of their mutual mission and presentation, it is just humbling.
It's true also that their magical pairing was a perfect aligning of the stars involving many factors such as the timing in Helen's development, family financial support, emergence of societal change for women, and two people with the brains and drive who were compatible. Both of them deserve the credit of Helen's success, as does everyone in Helen's complex family.

Which character will I play in the next round?
Maybe the next circle around I'll be Aunt Ev, shaking my finger and eating pickles, offering lots of advice. She's not so bad herself.