I sat on the edge of my boy’s bed and ran the back of my hand across his smooth, cherubic cheek. At the same age, my older son’s voice was already changing.
Most nights I wait until I know his door has been closed, the light is off and I hear the dog downstairs rooting around his aluminum dish for nighttime grub. I wait until the heft of daylight is tucked neatly beneath his bed and he has held silence for a few moments as it has held him for the last 12 hours.
The shadows and light cast on the walls of his room in the friendliest of ways–not because of the shadowy reflection of Mickey Mouse ears and baseball trophies, but in the way that my sweet boy has never been afraid of the dark.
“Mooo peeeese” he says more as a statement than as a request. I much oblige and ask if he would rather have space than the moon. He always prefers the moon.
I fumble with a cheap plastic rocket ship on his nightstand. I’m always surprised by just how dark it is and how difficult it is to find. It has a clock that forever blinks 12:00. His internal clock is spot on, so I have never bothered to fish out the manual from the library of lost causes, loose change and plastic ware to reset it. Every night, I push a button to reveal a constellation of stars, or an astronaut or a full moon large enough to beckon high tide thousands of miles away and swallow his room in white foam and ocean spray. While sometimes it is “spaceman” who will watch over him after I leave the room, it is mostly the moon he wants before he says “ready” in his polite request for me to let him drift off on his own. If only he could learn to push the moon button by himself at 2:00am to lull himself back to sleep instead of requiring my semi-conscious presence to be his field of poppies.
I finally find the correct button, and even though one of the spotlights has gone dark over the years, the most perfect Supermoon hangs low and flickering in the rotation of his ceiling fan. Maybe it makes it look like the man in the moon is bidding him a fair adieu with the consistency and persistence he likes to wave goodbye to people who don’t appreciate the value of farewell as much as his imaginary spaceman. Or maybe he likes the idea that someone would wave back.
“Bye Mommy”, he pours out in his child’s voice I believe sounds exactly like it did when he was four. Except he could not say “bye” or “mommy” or any combination of that at four.
That rocketship, with the projection of a perfect Moon has been around about that long. Really, probably as long as he can remember. It is only a matter of time before the remaining dim spotlight shines for the last time on his ceiling. I have a hard time imagining what it will be like to have to explain he already had the final night with his own personal moonbeam when I realize it the next evening. He will keep asking for the moon and I won’t have it to give anymore.
So I fumble in that friendly darkness every night searching for the moon button and praying that God takes the dog tomorrow instead.
But tonight, I went online and ordered the last 8 rocketship moon projectors I could find. Hopefully 50 more years and 18,000 Blue Moons. I don’t know how many of those moons he will have to light up himself, but until then, at least I know he is not afraid of the dark.
In U.S. suburbia at Halloween, if you are lucky enough, you get “BOO-ed”.
It is much nicer than it sounds.
Getting BOO-ed means opening your front door to find treats placed anonymously on your doorstep. You…I mean, your child… are to return the favor by BOO-ing another neighbor and so on and so forth. When we moved to our neighborhood 12 years ago, A1 and A2 were a toddler and infant respectively. Our development was full of mature trees, which also meant a neighborhood full of empty nesters. By the time the neighborhood turned over, my kids were much older than the new generation running the streets with strollers and trikes. A2 will watch what he calls “the babies” out our front window. The mothers are young and pretty even in their haze of exhaustion playing in the cul-de-sac and chasing down their little runners. I can relate to their frenzied outdoor fun since even with a 12 year-old, I too cannot just let my child out into the streets without supervision. Autism is an uncomfortable reality for the middle schoolers who in the neighborhood who don’t want me around.
But really, those little kids are functioning in their play where A2 is cognitively and they are at the age of humanness where they are accepting of his differences. For them, the differences are not about intellectual impairment, but rather size impairments as they watch A2 attempt to squeeze himself unsuccessfully into their Cozy Coups. Their questions are genuine and kind and they think nothing of him joining in the digging of dirt.
But most days, he will not join them in play. He knows those are the babies. He knows he is not. This often means I am benched from the cul-de-sac-exhausted-mommy-brigade that stokes glimmers of socialization and connection I had with other mothers when I was also young, pretty and still had energy.
Today, as he is every year since our street started filling up with little ones, A2 was BOO-ed. Twice.
Care packages are silently left at our door and I wonder which of our neighbors were sure to include him. Most know he doesn’t eat many solid foods, knows he might not notice something on our doorstep or spend much time with a special gift. I think despite my smiling isolation, I have neighbors who understand that being BOO-ed is about inclusion and is as much for me as it is for A2. And there is never anything spooky about that.
About a week or so before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself. For many years I thought it possible I could one day be a leader. However, my cherubic cheeks, diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time. I was a cartoon character. An adult who looked and seemed like a child in every way. Even while playing grown up in my power suits and single karat ring, the truth was I worked in state funded nursing facilities selling hopes of a dignified death to desperate families. And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.
On this particular September morning I whipped into the parking lot just like I did every morning at about 8:45am. It gave me just enough time to put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am. As I dabbed the black goo onto my lower lashes, the goofy morning team people were on that local station and broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it. I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing. It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions. There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.
At just after 9:00am, as I was thinking about cutting the engine, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine.
“Another plane just hit the 2nd tower. I don’t understand what’s happening.” And neither did I. And neither did the rest of America.
I sat in my car and for the next 20 minutes listened intently to verbal chaos.
I walked through the day room where there were two TVs on different stations but both were playing the same footage over and over. There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with regular people, that tore into the middle of the North Tower and immediately turned to smoke. People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.
“Becky….Becky…can you turn this crap off and put on my shows?” Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning. My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand. Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm. She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country. I wondered if this is what dementia must be like. I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea. Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist. Camera crews live filmed authoritative sounding officers standing in the lobby and strategizing their plan. Community servants looking for leadership while nodding heads with axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon. But then came the first BANG. loud enough that it was audible on the crappy 20 inch TV. The workers stopped talking and looked around.
And then there it was again BANG. And again. I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably. It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows.
They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness. And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right. Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.
And then life went on.
I had a meeting the very next day with a former employer who wanted to me to come back to them and pay my tuition for graduate school which started the following week. I spoke nothing of 9/11 again. An old colleague was sitting at her desk and I waved to her smiling. She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River. But see…that was the thing. I thought no one knew how to act because I didn’t. It still was far enough away that we could all go on like normalish. I was aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so much more valuable as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing. I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war.
And that is what I told myself.
And then life went on. And eventually it did for everyone else too.
Life wondering exactly how a loved one died or if maybe they would show up some day. Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds. Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another. Life of knowing just how horrible people can be to one another. And life went on.
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.
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?”
“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.
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!
My beautiful boy wandered into my room tonight. His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose. He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king. I can’t say I hate it when that happens. He is warm and cuddly and doesn’t thrash and kick like he used to when he was little. To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why. As he gets older, he seems no worse for the wear for it either. The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed. He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.
The thing is, my husband and I never wake up fully refreshed. There are Things That Keep Me Up at Night. Who will hug him when we are gone? Who else will find his sweet smile so endearing even at 3:00am? We try to be optimistic about his future. A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is. We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future. Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him. I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can. We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services will help house him, feed him, care for him. We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears. So we plan as best we can knowing surely, there will be some kind of services for him.
But tonight there is no sleep because now I am not so sure. I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb. My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults. I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”? What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult? There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.
The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle. Perhaps I truly believed all that because I see the innocence in his eyes. He is a pure soul who has helped me see good first and maybe I can spread that message for him.
So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you. While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby. But don’t worry….A2 won’t judge you. He is forgiving and will love you anyway.
Until it is hunted, killed, braised, barbecued and eaten.
Ok. Emily can only take credit for the first part….
One year ago this week, I was given the honor of speaking in front of my religious congregation during the High Holidays on the topic of hope. I stumbled on the video link a few weeks ago….and found the old me…the me speaking from my heart a year ago to be jarring and familiar. This is the (abridged) transcript from that speech. I am posting this so I can link to it in the coming days….to tell you of the what-came-next…..
I’m here to share my story of hope. My family and I have been congregants of BT 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 out here in the audience who feel the same way that they can recognize that 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. And it shows a side of hope that’s hidden away that only parents with children with significant disabilities can understand. That 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 that 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’s not optimism. Its not about expectation. I have realistic expectation for my child. Its 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. Its part of our human condition. It 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 even his driver and he wasn’t sure what state he was going to find him in. 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 I 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 who are 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.
…..stay tuned for part 2…one year later…
*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)
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…..
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…
One night as I was plugging in my son’s iPad, I noticed he got a text. Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me. My child at 11 years old is completely illiterate and he had never gotten a text before. I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.
Hi A2. This is Ryder
Are you in bed?????
If you aren’t what time do you go to bed???
Maybe I have been wrong! Maybe school has been helping him truly cultivate and explore friendships after all! Real ones! A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls. Could he be a child from the resource room? I could not know that either because the school will not tell me the names of any of the children in that room due to “privacy”. The kids he spends the majority of the day with. The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.
My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago. A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it? Does this child comprehend that A2 can’t read? Could this be an adult? A teacher? A predator? My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!
As it turns out…..Ryder was trying to get in touch with A2. Just not MY A2. Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends. A2 was contacted by a ghost. An illusion of a promise of the world to come.
The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach. One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment. While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute. It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad. It would mean he was growing up.
Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes. One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall. “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”. I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.
These things. These little things that give us a perceived sense of value–that we anchor to other things and make them into something more. Ultimately, the text itself was probably meaningless to A2. He however does very much care about all those things that receiving a text implies. Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays. My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all. I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages. No girlfriend break up text. No secret texts between friends who are standing right there with him, exploiting his trust. No anxiety over the three dots or “read” receipt. No. None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.