The nights you rise up out of your bed and wander our dusty floors? Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?
Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?
Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?
What do you dream about sweet boy?
Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets? My soft words are not your anchor. You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.
How do I teach you to breathe when you emerge from the black water instead of screaming?
You wake gasping for air.
What do you dream about sweet boy?
When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand? You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.
You drift safely on your back.
Do you know you dream sweet boy?
Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?
Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day? Are those birds the thing with feathers? Do they chirp the same songs they sing to me?
Do you not dream at all sweet boy?
Perhaps instead you play with angels who speak your native tongue. You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.
Because no matter the circumstance of night, in the morning you wake wide eyed and blinking and peaceful.
The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy. I would imagine it’s the bittersweet joy of having children, watching the transformation from innocent angels to inhabitants of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!” I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer. As those other children blossom from midlings to Ivy League applicants, A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child, but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.
Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)
Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.
“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”—On the Origin of Species, Charles Darwin.
A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I was not in the mindset to answer that question but quickly realized I could NOT answer because in all the years I’d not only never been asked that but also never considered it either. It was the kindest thing anything had ever asked me about A2 and perhaps it was the somber tone of the day that rendered me without speech (which if you know me well does not happen often) or maybe I had always been so caught up in the action oriented nature of having a young child with autism that to contemplate that would stop me in my tracks and make me crumble….or perhaps in the moment I felt guilty for even thinking I would crumble and considered myself so lucky to still have those I loved around me regardless of circumstance while my best friend was grieving the loss of his partner……so I excused myself instead. What I have decided over the years is that it is a bit like A2 contemplating this fountain. It is weird and fascinating and wonderful and I have no idea how it really works or how it got there. I notice every single droplet from the ones that predictably slide down the posts to the ones that spit out to collectively leave me standing in a cold puddle over time that leave my toes numb without notice until its too late. There is no warning when the water will turn to an exciting spout of beauty creating a soft rain and visible rainbow or when it will create bursts of rainy arches that I cannot immediately escape leaving me far more drenched and colder than I want to be and on opposite sides of the fountain from whomever was standing near me. So Trevor…..that is what it is like……Thank you for asking
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.
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 with whom he spends the majority of the day. The kids who also probably never get or send texts or receive invites to play. The kids 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 area code was from a city we lived 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 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 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.
Many years ago when A2 entered the public school system, we moved him from a private school with a peer program and an ABA focus. He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young. It was no small decision and perhaps ultimately made under the haze of Xanax.
I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!)
The desks were so small and facing each other. Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling. Not at all what his ABA classroom looked like…way too much to distract..but it was all good. He will learn to adapt to this no problem. The neighborhood kids are all here! Someone took the time to take all the crayons out of the boxes!
I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.
There was an envelope on his desk with all the “getting to know your child” papers like everyone else.
There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.
Sure, my mother hips were hanging over both sides of the tiny chair. And sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me, but that’s what we do here in public school!
Normal, regular people stuff.
Then the teacher started talking. And talking. And asking us to turn pages in our packets. And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.
The road map to get there sure as hell was not the road map to get to Italy or even Holland for A2. Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot. But it’s a dry heat.).
I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out. That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.
A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around.” She meant well, but he could be a rock star at his other school.
I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of Stoli while listening to other parents ask questions like, “What if my child is above the standard for reading?” or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac, but the vodka would probably be frowned upon at the administrative level.
Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%) I don’t fit a mold and when I realized I was going to be a mom 13 years ago, I had no expectations my kids would either. I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.
I’m ok with all that.
What is hard is that the rest of the world generally is not.
While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask other kids if they will Facetime or text him later.
Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.
He doesn’t get detention for talking out of turn or showing up to class late.
He doesn’t trade carrots for cookies with the kids at lunch.
The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.
And curriculum night? Well…all those things are written in the blank spaces between the lines on the syllabus. The syllabus that is only visible to certain parents. Not just like everyone else.
The tiny desk is like a mirage. Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him. Goals are set to reflect the things A2 CAN’T do rather than what he CAN, whereas the curriculum for the rest of his peers are focused on what they WILL do. And not just at 80% accuracy in 4 out of 5 observed opportunities. I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.
And I won’t sit through that.
So tonite, the very last curriculum night of elementary school for me ever….like a pro, I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.
The bottom line is I would rather have heartburn and a hangover than go to curriculum night. What would you rather do?
There are some days that my heart breaks selfishly a bit.
Days like today.
As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.
Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit on sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns.
There are days….just like every other chubby middle aged mom, I just miss my youth.
I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same.
There are days….like every other mom of little ones, I wish I could lounge near a pool instead of being on high alert waiting to save my kid from drowning.
I see the moms with wee-ones on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy, not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads since my guy is now too old to place on a changing table.
There are days….like every mom of little ones, I just wish we were out of the diaper stage.
Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand.
I feel conflicted by my own selfishness.
I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not, then we are still golden. And yet I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling. I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences. I hope not. That way I can keep my selfishness where it belongs…to myself.
But here’s the thing.
Don’t ALL moms go through this?
We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day. Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot.
No. I will never worry about my kid having a psycho girlfriend.
I will never worry about my child’s heartbreak of being socially brushed off because he is wearing the wrong logo on his sneakers.
I will never worry that I did not raise him with morals or respect for adults.
I will never worry about whether or not weed will be his gateway drug to heroin.
Those things are equally as important even though there are days I would rather worry about those things. Somehow it became not OK to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways.
See…because you know what I miss too some days? My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about skin cancer. I miss not having to hire a crane to hoist my chest up in a bathing suit. I miss drinking beer all afternoon in the sun and flirting. I miss working full time and then actually being bored in the evening when I couldn’t find someone to go to the coffeehouse to see some local guy playing acoustic. And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day only to realize there would be no way in hell. Because we will never be the same and for that the world will never be the same. This is the backward legacy that our kids give to us….as we gave to our parents.
I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately, autism or not, I really don’t think I’m so much different from any other mom.
These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.
Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home. I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view. But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.
So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. #onepulse