B is for Boredom: 2020 Autism Acceptance Month

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Many hours spent on bridges and docks and piers. Don’t be confused by his face. You are not looking at boredom.

The topic of boredom for A2 has not dissipated for us since I first wrote about it in 2015. Instead it has become far more complex and it has teased out some things I have always known and some things I never realized.

A2 still desires socialization. He will still stand at the back window looking through the trees to see if the neighbors are out playing basketball. He will sadly ask to go over, reflecting he is already aware of the answer. At 14, play dates with adults present are no longer planned. Other kids really like A2–he is friendly and sweet and makes anyone near him feel special. But they are no longer referred to as “friends” like they were when they were nine. Instead, they are now “peers”. While in 2015, that would spark a bit of resentment, today it only makes me just a little bit wistful while I wait for the existential slide of middle schoolers through their developmental rite of passage of becoming their own person in a social world. They might soon recognize just shooting hoops without playing a game is ok. A shared popcorn in a movie theatre side by side is ok. Cheering on the Buckeyes or the Clippers and high five-ing is ok. We can wait. That is hope.

A2 still cannot initiate or maintain a leisure activity at home other than switching out screens and still will pace anxiously asking, “Wha’ is da schedule?” until we show him that we indeed have a schedule and potential order to the day, even if he cannot read it. Even if we don’t follow it. (Side note: I have recently had the notion that A2 thinks there is some magical schedule every single day that somehow everyone around him is aware of but him. We all know know what comes next and we are just holding out on him). In the last 5 years though, I realize he asks more for activities than he does people. And when he does ask for people, he asks for me or his dad. And sometimes his grandparents or uncle, which I always found unusual since he spends very little time with any of them.

You see, I now recognize I cannot untangle the wiry, rat-king ball of Christmas lights to always determine what strand is boredom and what is loneliness. Let’s face it, I think most parents are ok with their child being bored, but rarely are any of us ok with them being lonely. I have had to tease out what just LOOKS like boredom or loneliness. Which wires are behavioral challenges and which are moments he is attempting to communicate or capture the attention of someone else. Maybe it is not boredom at all. He may be in deep contemplation of some visual detail around him and as he sits and stares off, he may not be waiting for his personal conceierge, driver or tour guide to whisk him to the next place or engage in discussion over what he sees.

Sometimes this is hard to see too because A2 is so joyfully involved in so many things. He plays baseball every summer for the Miracle League. He is a state champion bowler with the Special Olympics. He loves the zoo and the science museum and Chuck E. Cheeses. A2 lives for summer for crowded festivals and concerts and baseball games. In the winter, he figured out how to find the movie theatre app on my phone and has actually purchased seats to movies (unbeknownst to me). He lives for Columbus Blue Jackets Hockey but seems ok with defaulting to OSU hockey or women’s basketball (which is $100 less a seat!). We are groupies one Friday night a month at a local bar where his favorite band plays and they keep the french fries coming. There are times we are surrounded by so many people, yet we are still experiencing all this excitement completely alone–shared just between the two of us.

I have realized my boredom and his boredom are not intertwined. We have stood on docks of piers in major cities and watched the boats and barges and helicopters fly overhead for hours at a time. We have sat on similar docks with still waters at the end of quiet meadows watching the ducks drift by. We have paced the length of regional airport lobbies watching single engine planes take off and land. We have spent countless hours of outings like this for years, where even during extended family visits, they will choose not to attend because these ARE the activities that he wants to do. I have learned to let go of sadness of not feeling important enough to share the space of our leisure or the recognition I have spent 1000 afternoons bored and lonely and might want some company for my overactive amygdala and ADHD brain.

Instead, I learned to Just. Be. Present.

And just like that, I recognized A2 is not bored or lonely in those long afternoons. It is me. And he and I are not the same person. I started noticing the art and details and patterns around me. I started noticing when the light was “just right”…or when it was about to be. I started noticing ambient noise that is drowned out by attention grabbing sounds (which, by the way, are typically man made). I also started noticing when I was not in the right mindset to go sit for so long and started teaching A2 to be considerate of my feelings time to time in those moments and how to compromise. He is empathetic and has the capacity to learn that and should, just like every other teenager.

I have so many more thoughts and concerns about the topic of Boredom and how it manifests in our Autistic Family in 2020, but during this global pandemic that has moved from social distancing to sheltering-in-place to quarantines, I recognized that there are many, many folks out there that are experiencing boredom or loneliness on a level they never have. For those of you who that description fits the bill, look to your autistic friends or caregivers. We all still have the capacity to be entertained and to communicate and to keep busy. I find people are not sure what to do with a slower pace, a smaller world filled with uncertainty or with believing their time is being spent without the perception of productivity or an end result. Us Autism Families live on a higher plane of living than what modern society has sold us all. Ask us. Most of us are happy to include you on how to navigate this much more familiar place.

2015: B is For Boredom

While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.

2020: B is For Boredom

The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

Happy National Dog Day! (And Happy 6th birthday to our Wally-Woo…King of all Dogs. Master of Me). What would we do without you?

Running through Water

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Originally Published as The Tail Wagging the Dog 9/2015

Our dog is playful and fun and sweet and well behaved.

Until he is not.

And then, he is a bit of a sonofabitch.

And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog.

The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea…

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Days of Awe. Mostly Without Feathers

Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for only part of this….

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Three years ago this week, I was given the honor of speaking in front of my congregation during the High Holidays on the topic of hope. When the rabbi approached me 4 months earlier and told me the topic, I was sure I could pull SOMETHING together. I was flattered and thankful for the opportunity.

And then I fully realized my task.

Asking for five minutes of my time to convey what hope was like for me…in what I assumed had to do with parenting a child with a disability, suddenly morphed into the equivalent of digging for research for a dissertation. I was not sure what hope meant at all, though in fairness, I am not sure I ever fully understood what hope was.

I stumbled on the video link a year afterward and found the old me. Hearing this stranger speaking from the heart was jarring, yet familiar.

This is the (abridged) transcript from that speech.

I’m here to share my story of hope.  My family and I have been congregants here for the last 10 years.  I have two versions of the story I was going to tell today and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So, I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability, I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people sitting here who feel the same way, they can recognize they are not alone. 

You see…sometimes its not about being hopeful or hopeless. Sometimes there is this vague middle ground, if that exists, in hope. 

I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence. 

I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence. 

Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community, and because of that I sometimes feel like I am the “Autism Representative”. 

So, Side A is extra-super truthy.  It shows a side of hope that’s hidden away. That only parents with children with significant disabilities can understand. We hide away. But by sharing this truth of hope, I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. 

Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you, Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope is not optimism.  It is not about expectation.  I have realistic expectation for my child.

It is definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me. 

Hope just is. 

It’s part of our human condition.  That quote captures the vulnerability of hope as well. 

Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and his driver and he wasn’t sure what state he was going to find his grandfather in the first time he saw him after she died.

So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”

 The grandson says, “That’s great grandpa.”

And the grandfather says, “So, went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven.’” 

The grandson sits back and laughs and says, “Grandpa, you always help me see the glass as half full.”

The grandfather sits back, looks at the grandson and says, “No….its a beautiful glass.”  

So, my moral obligation today was not to make you think that those of us who have children not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

On this Kol Nidre, if you observe, may you reflect on what hope means to you in a finite and fragile world also full of love and optimism and come out the other side recognizing the glass.

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

Edited and rewritten from 9/2016

 

 

Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

Day 2 2016: B is for Behavior

Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

IMG_2885B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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It’s Not Your Mother’s Mother’s Day

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(originally posted Mother’s Day 2016)

To my children on Mother’s Day:

You did not ask to be born.  You did not ask to walk this earth and you certainly did not create your own realities and struggles….at least not yet.  You did not get to choose me as a mother.  I can guide you in ways that I think will ease your journey but ultimately your external successes and failures will be YOUR successes and failures.  You get to have those on your own and I will rejoice and celebrate and swell with pride as if I created those monumental moments but I do not get to take credit for those.  I will feel guilt or shame or sadness in your failings or perhaps I will distance myself from them for those same reasons, but ultimately I don’t get to take credit for those either.   Whatever respect or love you have for me through each stage of your lives is created, taught and fueled by me and  while those things feel like an expectation when it comes to a mother, in every other situation those things are earned….I will assure you it is the same in our case. It is not my expectation that you celebrate me today.  If anything, the onus is on me to celebrate you.  You made me a mother and by proxy after 35  years I was given the gift of the ability to feel love unconditionally.  I don’t choose to love you…..I have no choice.  What I do with that part is up to me. You do not owe me for being attentive to your needs, by making you a priority.  That is my contract with you regardless of circumstance.

So on this Mother’s Day, I celebrate you both.   The loves of my life.  May you:

–Never feel as if your existence was a burden to me.

–Always feel like a joyful priority, even when I have forgotten to appreciate that myself

–Recognize that you are separate from me….that my sadness is not your sadness…my expectations should not be your expectations, my disappointments are not your disappointments.  If I am doing this right, I will not feel like your obligation.

–Know that in my humanity the above might not feel that way because nothing makes me feel more joy than your joy….nothing makes me feel more worry than your worry…and unfortunately there is not much I can to about that.

–Never feel less because I acknowledge your differences.

–Always feel safe in telling me your thoughts and ideas no matter what.

–Know that when I don’t understand your needs that you may not be able to change that but you can ask me for more patience

–Always feel the love and respect I have for you and I hope that I have done my job in teaching you how to have the wisdom to distinguish and create healthy distance as you grow when others are not treating you with love and respect who should be.  Including me.

–Know that if I am feeling selfish or if I cannot manage something when it comes to you I will protect you from that by being honest so you never misunderstand my intentions.

If I am raising you right, for me every day should feel like the holiday we are told is Mother’s Day.  But for today, I celebrate and thank you for being given the privilege of being your Mom. Now let’s get to the Zoo.

xoxox

 

 

 

Why we do the things we do. The trauma edition.

After seeing a thread from another writer today about the topic of trauma response in reference to the state of hypervigilence as special needs parents and all of the universal agreement, I thought I would share this again as winter break winds to a close…..

Running through Water

-font-b-Handmade-b-font-mini-kraft-paper-font-b-envelope-b-font-5-8x9cmThere is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I…

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Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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Days of Awe. Mostly Without Feathers

Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for the first part….

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Three years ago this week,  I was given the honor of speaking in front of my congregation during the High Holidays on the topic of hope. When the rabbi approached me 4 months earlier and told me the topic, I was sure I could pull SOMETHING together. I was flattered and thankful for the opportunity.

And then I fully realized my task.

Asking for five minutes of my time to convey what hope was like for me…in what I assumed had to do with parenting a child with a disability suddenly morphed into the equivalent of digging for research for a dissertation. I was not sure what hope meant at all, though in fairness, I am not sure I ever fully understood what hope was.

I stumbled on the video link a year afterward and found the old me. Hearing this stranger speaking from the heart was jarring, yet familiar.

This is the (abridged) transcript from that speech.

I’m here to share my story of hope.  My family and I have been congregants here for the last 10 years.  I have two versions of the story I was going to tell today and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So, I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability, I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people sitting here who feel the same way, they can recognize they are not alone. 

You see…sometimes its not about being hopeful or hopeless. Sometimes there is this vague middle ground, if that exists, in hope. 

I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence. 

I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence. 

Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community, and because of that I sometimes feel like I am the “Autism Representative”. 

So, Side A is extra-super truthy.  It shows a side of hope that’s hidden away. That only parents with children with significant disabilities can understand. We hide away. But by sharing this truth of hope, I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. 

Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you, Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope is not optimism.  It is not about expectation.  I have realistic expectation for my child.

It is definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me. 

Hope just is. 

It’s part of our human condition.  That quote captures the vulnerability of hope as well. 

Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and his driver and he wasn’t sure what state he was going to find his grandfather in the first time he saw him after she died.

So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”

 The grandson says, “That’s great grandpa.”

And the grandfather says, “So, went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven.’” 

The grandson sits back and laughs and says, “Grandpa, you always help me see the glass as half full.”

The grandfather sits back, looks at the grandson and says, “No….its a beautiful glass.”  

So, my moral obligation today was not to make you think that those of us who have children not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

On this Kol Nidre, if you observe, may you reflect on what hope means to you in a finite and fragile world also full of love and optimism and come out the other side recognizing the glass.

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

Edited and rewritten from 9/2016

 

 

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Running through Water

halloween

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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