It's Like This (Audio)

We are caught in a slow-down on the freeway. There's a bottleneck up ahead.My son is in the passenger seat, his lunchbox at his feet. We are heading home from his day program through the heat of the late afternoon.I'm feeling the pressure of cars on all sides of us and watching for an uptick of anxiety from the boy on my right, due to this blip in our expected routine. This is a scenario ripe for agitation, for both of us.Our lane has got to be the slowest. We are an island with everyone else skirting around us, getting ahead while we never seem to move.I smile when I recognize the metaphor.Oh, this is the special needs life – sitting side by side with the person you're caring for, moving at a different pace, bracing yourself for the inevitable bumps in the road, trying to fit in … if others will let you.Instead of this idea sending me into road rage, I am surprised to hear my thoughts – for the briefest of moments – go in a different direction:I can be OK with this.Inside our car, in our bubble, we're fine.He and I are sitting together. His hands are spinning beads. My hands are at 10 and 2 (because that's what my co-pilot prefers).We have air conditioning to stave off the heat. We have snacks to curb any pre-dinner munchies. And we have music playing on the radio.Right now, it's like this. And, we're OK.I guess this is what those mindfulness meditation teachers have been talking about – the benefits of living in the present moment, no matter what that moment looks like.Even when we're stuck in traffic.Yes, it can suck to be in the lane that doesn't seem to be moving.But I could really make this traffic jam worse – by worrying over what we're missing out on in this delay or blaming myself for not taking a different route or thinking about how much I just spent on gas or becoming convinced that, this is it, we are going to be stuck here forever.The simple reality of right now – stripped of all the stress about getting to some future place where things might be different – is usually easier to handle.This doesn't mean denying the suckiness of the current situation, it just means not compounding it with over-thinking and over-worrying.This, too, shall pass, and all that.The traffic squeezes us. My son changes the channel on the radio to a better song. My grip on the steering wheel loosens a bit.Wow. If I can find a hint of serenity in the middle of rush hour on the 101 North, anything is possible.In moments like this, I catch a glimmer of a new kind of hope – it's not entirely clear to me yet, it's still a wavery mirage over the distant pavement.It's different from the fear-fueled hope of my son's early days, when I thought maybe we could still maneuver around this autism thing and race onto some clearer path.This is a more grounded hope. Not that everything is going to be OK, but that we will be OK.Even if we never get out of this lane.This is the road we're on.It's always stop-and-go, it can be sketchy, with crappy signage and endless detours.Sometimes an opening appears, and our pace increases…until, inevitably, we slow to a crawl again.But we will be OK. With time and practice, and a caravan of supports, we can build our capacity to navigate around the potholes that are surely on the horizon.Right now, we are at least inching forward in the right direction.And, hey, there's a good song playing on the radio. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

I mostly ignored April this year.Autism Awareness Month – or Autism Acceptance or Action Month – whatever color we're wearing these days.I know I should use any forums I have to promote awareness and encourage acceptance and demand action for those living with autism.But autism is loud enough here already without that extra amplification.There's only so much I can handle.The April theme around here seems to be irritability.His, and mine.I'm irritated with his health insurance company, who somehow forgot that I am his legal guardian and am, in fact, authorized to talk about his care (no, you can't actually speak to the “member,” although, believe me, I would love it if you could).I'm irritated with pharmacies and prior authorizations and potential drug interactions and doctor's appointments that take forever to get scheduled.I'm irritated that the notes from his dermatologists' appointment say, “Patient was offered full body check and refused,” when they really should say, “Parent/Guardian requested a full body check, but patient was unwilling in the 30 seconds the doctor allotted to give him a chance to agree.”I'm irritated for friends managing very challenging aspects of this disability that are not worthy of any April autism celebrations.I'm irritated by the difficulty of describing my son to potential new providers – how to paint an inviting and positive picture that is also realistic about the ups and downs they might encounter on the job.Because my son is irritable this month, too.He has had some nice moments – time with our extended family, outings with his day program, even trying a few new foods (and he liked the broccoli calzones! Yes!)But in between these glimpses of contentment, he's agitated at things seen and unseen – and his irritation takes over his voice, his body, and our shared living quarters.I've pulled out the blue tape again, to block his perseverations from the kitchen while I'm cooking.I keep my office door closed more often.I've added a “Do Not Touch” sign to the kitchen faucet to remind him that he and I are not in agreement about how the sink should look.We argue over clothes and chores and cleanliness and carbs.I try to choose my battles, still searching for the right balance between his autonomy and my necessary caregiving.Some days, everything is a battle, and I'm waving the white flag over all of it.Sorry I bought you new shoes, kid. How dare I? You just keep wearing your old worn-out ones while I figure out an appropriate “transition” plan…My son often sleeps in late, and is usually agitated on waking, so I find myself in the mornings reciting a variation of this prayer that I've seen making the rounds:When he is snippy, it's hard not to take it personally.I tell myself that I need to have thicker skin. He is allowed to b***h and stomp around if he wants to, and it's not about me.Well, sometimes it is about me. I've kept my hand in my pocket for too long, my hair is not the way he likes it, my sleeves are pushed up, I'm using the wrong pen.My son takes a medication that is approved to treat “irritability associated with autism.”I am associated with autism, and I am also irritable. Is there a pill for that?I worked with a Relationship Development Intervention (RDI) therapist for a few months who reminded me that my son needs opportunities to just be with us – no demands, no expectations, not even suggestions – to just have someone there, to be with him as he is.He doesn't always want that connection, but when I really stop trying to help or instruct or explain, the irritants fall away on both sides. He doesn't have to hear my annoying requests or questions, and I feel a little less worried about his behavior and health and whatever I'm supposed to be doing for him next.If he's willing, we can just hang out and practice not getting on each other's nerves.I don't always know what is beneath his agitation.But I know what's beneath mine. I am worried for this kid I love, frustrated that there are no easy solutions – and his agitated noises make it hard to think (or make the needed phone calls).All I can do, some days, is step away – put in earplugs, go for extra walks, turn up the music – to try to get myself in a better place in order to help him.And, hey, giving myself a break from him gives him the benefit of a break from me, too.Almost daily, my kid will come close to me and abruptly turn his back – blocking my view of whatever I'm doing. It's not a snub, though.“Itchy!” he declares, demanding my assistance.I can't seem to relieve a lot of his other irritations lately.But this one, I can do.I scratch his back, and – at least for a short minute – we both feel a little less irritated.Thanks for being here. See you in May (and Go Suns!) This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

I made it to my 20th issue! Not the post I thought I'd write, but here we are… Fair warning, this one is about pet loss. If you listen, be sure to scroll through to see some pictures of our sweet Piper. Thanks for being here.When our dog Piper became part of our family eight years ago, we weren't sure our son would tolerate having a pet – he'd developed some fear of dogs after being bitten by one a few years before.But this sweet-tempered, deaf, and already middle-aged dog was a good fit for our family.She and my son had a lot in common.Not long after we had adopted Piper, I found her on the back patio barking at a planter I just had moved to a different location.She appreciated sameness and routine. I would get reminded by both of my “kids” if I was late on mealtime or promised car rides.I had them both hovering for possible treats whenever I stepped into the kitchen.Neither could pass an opportunity to chase a bird into flight if they saw one standing on the ground, at least when they were both younger.And, they shared a similar attitude when it came to physical affection.Piper greeted us warmly and took a good ear scratch or two, but would usually reach her limit and move away to lay just beyond arms-reach, no matter how much we coaxed her to come closer.Just like my kid, she wanted to be near us, but not too near.Last week, when the vet said it was time to say goodbye to our sweet old dog, I tried to prepare our son for the change ahead.My son likes to know where my husband and I are, and will repeat our names often when we aren't in view. He often asks for Piper, too, if she's not where he expects her to be. I knew this could get tricky.Looking at other examples online, I wrote a “social story” to explain Piper's death as simply as I could, without abstract niceties or euphemisms. There would be no “nice farm upstate” or even “crossing the rainbow bridge.”It had to be kind of blunt to give him a chance to understand that she wasn't coming back.Piper has been with us for 8 years… She has been a nice dog for our family. Now Piper is really sick. She is hurting and coughing… She has a tumor in her belly, and the Vet cannot fix it.Mom will take Piper to the Vet today. The Vet will help Piper die without any pain.Dying means that Piper's heart will stop beating. She will not breath, move, or eat anymore.She will not be at our house anymore and we will not see her again.Piper has lived a very long life for a dog.We will miss her.Well, we hoped he'd miss her, at least.We weren't sure how he was going react. He was never affectionate with her, and often seemed irritated by her habits.The closest he came to petting her was to fix her ear if it was flopped the wrong way.Whenever Piper shook her head, like dogs do, it would cause my son to reflexively shake his, too, every time.We were lucky that she rarely barked, something that my son would not have been able to tolerate. But Piper snored louder than most people. We'd have to wake her up to be able to hear the TV, or each other. Her naps were often cut short by my son who would nudge her (sometimes nicely) when she got too loud.He didn't purposely feed her under the table at dinner, but if he got up for seconds, he'd find himself unable to return to his seat until she'd finished grazing for crumbs under his chair.She was a good dog, and she was also kind of a pain in the butt.But I knew I would miss her and I knew he probably would, too.I read him the story and I encouraged him to pet her (a little) and say goodbye.It will feel strange to not have Piper at our house anymore.It will take time for us to remember that Piper is gone.In her final moments, the vet gave Piper forbidden chocolate treats — which was both sweet and sad — and she was happy.And, of course, in the “comfort room,” when she fell asleep under the anesthesia, she started snoring immediately.My son didn't ask for her when I came back from the vet that afternoon, or most of the following day.It was not until her things started to disappear that he began repeating Piper's name.We gave her remaining food and treats away, her bed and her dishes went missing.And that made him uneasy.He may not have pet or played with her, but Piper and her “stuff” were very much a presence in his life.Every morning, he would reset her empty dog dish to the center of her mat and straighten her bed (if she wasn't in it).He'd open her bin of food to make sure the scoop was sitting the way he liked it.Several times a day, he would let her in and out the sliding glass door.Most evenings, after I'd left her kibble on the counter to soak in water (it had to be softened for our toothless girl), my son would set the bowl down for her, shuffling uncomfortably around her jiggling, excited body. He was not really interested in feeding her but was willing to do it so the dish could be returned to its “correct” position on the floor.Now, there are empty spaces where the bed and the dish belong.I keep expecting to see her, too, greeting me in the morning as I pour my coffee,Or clearing her throat at my office door to remind me it's dinnertime,Or snoring under the hall counter among the shoes.I don't have to clean up poop in the backyard anymore.But I have to sweep more under the dining room table.We are adjusting to new routines.I guess that's what grief is: Familiar patterns are broken and it takes time to be at peace with the change.In the last few weeks of her life, Piper seemed a bit more affectionate. She wasn't feeling well and stayed closer a little longer for scratches.Since she's been gone, my son's been hanging around closer, too.He asks for her, and we read the story again, to remind ourselves:It's OK to feel sad or confused that Piper doesn't live with us anymore.We can look at pictures of Piper and remember her.Piper was a good dog. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

* I would've (just barely) made my monthly deadline if February wasn't such a short month!Thanks for being here for another issue of It's Like This. It feels a bit oblivious to write about my little life when there are massive things going on in the world. I'm worried about war and refugees and all kinds of things. And our life here is still, like this. It helps me to write about it, and if you feel inclined to read or listen, thanks.I walk around the park near my son's day program, forcing myself to take a little time off, instead of running errands or checking things off my “to do” list.It's hard to stop thinking about autism, though, and everything my 22-year-old son needs.One word in particular is weighing on me.Profound.This can mean “demanding deep thought,” so that's appropriate.Profound also means strongly felt. All-encompassing. Deep-seated or severe.It's heavy, this word.The medical journal The Lancet recently published a report on the state of autism research and clinical practice to provide recommendations for how to better serve the 78 million individuals with autism around the world.They are calling for more targeted research and a stepped care approach to support the immediate needs of those living with autism all across this wide spectrum.In one section of their 64-page report, they describe a subset of autistic adults who require 24/7 supervision and who have very limited language, intellectual disability, or both. They suggest the term “profound autism” to identify this population.This description – a need for constant monitoring even as an adult, and a communication impairment that increases the risk of abuse or maltreatment – fits my son like the pizza-stained T-shirts he insists on wearing every day.It shouldn't surprise me that my son shows up on this page of the report. We've been here for a while.But I guess I'm still getting used to it.When someone gets diagnosed with autism at around 3 years old, there are very few indicators of their ultimate outcome – those who will still have “substantial delays” in adulthood “are not clearly distinguishable” from those who develop more typical speech or functioning levels.The Lancet Commission stresses that it would not be appropriate to use a “profound autism” label for very young children, given the variability in the way the disability manifests in the first few years of life. But they show evidence – reviewing the admittedly few case studies available – that the majority of adults who meet the criteria for “profound autism” had settled into this category of the spectrum by their middle elementary years, around ages 8-12.Man, does that pattern sound familiar!That timeframe for my son, from 3rd grade through middle school, was full of struggles about his placement – in school, in the general community, and even in the “autism” world.Inclusive schooling began to give way to more segregated classrooms. His typical peers were leaving him behind, but so were many of his autistic peers.He lasted less than a week in an “autism” classroom at a charter school. They couldn't accommodate his lack of language and emerging maladaptive behaviors - he didn't have the “right kind” of autism for that class, I guess.All of these “autism-friendly” events that were cropping up were not always welcoming to kids like mine.Psychiatrists, even those with autism caseloads, often had nothing to offer my nonverbal child.  At conferences, we were all enamored by adults on the spectrum who spoke – verbally or in alternative ways – about their early non-verbal years and how they “made it” into independent living and colleges and careers.Meanwhile, I was fighting with a middle school psychologist who believed there was no need to assess my son's academic progress because he was headed for a future in a “sheltered workshop” anyway.Now, that guy was a jerk. Not to mention he didn't know the world had moved on and there was this thing called home and community based services.But my son's autism was shifting into something all-encompassing by that age.It's no coincidence that I started writing publicly about my kid during this transition. I kept trying to explain to myself and to others just what this “autism” life was about.Because it's certainly not the autism of the quirky mathematicians or socially awkward scholars you see on TV or in movies.Since the Lancet report came out, some advocacy groups have been profiling individuals in a #ThisIsProfoundAutism campaign to help the outside world understand what autism looks like on this side of the spectrum.   There is a lot of variation, even within this population, due to add-on medical and neurological conditions, from gut issues to epilepsy. And like my son, the level of care needed often depends on the day, the situation, the access to proper services.But I can see my son clearly in these profiles of “profound autism” – individuals who are sometimes joyful and often hurting, who can be charming and are resilient, who have unique interests that are both endearing and exasperating to their families, and who have profound 24/7 needs.My son has a beautiful, bright grin and an infectious laugh, an incredible visual memory, and a way of drumming complicated beats on his belly and chest that is quite danceable.And, he has struggled with self-injury and meltdowns, can become trapped by his own obsessive rigidity, needs support to learn basic daily living skills, and cannot describe his pain.He spends much of his time spinning his beads and pacing, alone in his thoughts.But when I take him to his day program, he waves his hand at the ground and mumbles “Bye, mom” as soon as we walk into the courtyard. I do not have a role in his routine here and I am expected to leave quickly.He climbs the stairs by himself and soon I hear him open the door to the activity room.His peers greet him with shouts of camaraderie like he's a regular at a bar.We have a community here, and that's a very good thing.I head to the park nearby to walk, read, and recharge.I have a lot of deep thinking to do.The Lancet Commission's report: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltextThe Autism Science Foundation's profiles of Profound Autism: https://www.facebook.com/hashtag/thisisprofoundautism This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

We're dancing through this life as best we can - hope you all are, too. Thanks for reading and/or listening!“30-Second Dance Party!”I overhear the techno rhythm begin to pulse on the other side of the house. But I know the announcer with the German accent is incorrect.This party will be more than thirty seconds – more like 2 1/2 minutes. It is nice to see our kid enjoy this silly gift – a battery-powered speaker that plays short clips of up-beat music, a clever, funny way to shake up your boring life for 30 seconds. The kid figured out pretty quickly that the button plays five different 30-second clips in a cycle, so he likes to hit the button repeatedly to hear them all in a row.He doesn't dance too much - unless his goofy parents jump in to show off their highly embarrassing moves. But I'm glad he likes it – there aren't many gifts we can offer that keep his interest. I'm also grateful that this Dance Party button can live on his side of the house—Most mornings, the first words I hear from my son are not, “Hi,” or “Good morning,” or even a request for breakfast.Whenever he gets up, my son comes to find me at my desk, and declares his intention to make his bed.“My bed!”He wants his bed to match the photo that I've hung up in his bedroom – my solution to his previous habit of leaving his bed not just unmade, but with the blankets and sheets untucked and balled up in the center of the mattress. The photo reminds him how his bed is “supposed” to look when he's not in it, and it is working amazingly well. He makes his bed every day. But since I labeled the photo “My Bed,” that's how he tells me what he's doing.In return, our son has trained us to make our bed, too - because if he discovers that his parents' bed is unmade, he will continue to announce, “My Bed!” until that chore is also complete. Yeah, working on adding verbs to sentences and using proper pronouns, and keeping him out of my bedroom… that's one of the songs that never ends around here—My son has tentatively agreed to small changes to his wardrobe of worn-out t-shirts and athletic shorts, at least on a temporary basis. Up north over the holiday, he actually wore long pants and a jacket for a walk around the park on a brisk day. He caved to my pleading - there's snow on the ground, son, please cover your legs – with the promise that he could change back into his regular shorts when we got home. Which he did, the second we got back inside.I took that successful outing as a model and got him to wear a new t-shirt for an afternoon out of the house the other day. Again, as soon as we returned home, he made a beeline for his closet - comfortable, ratty t-shirt restored.So, we may be heading toward a dress code for “at-home” vs. “out and about.” It's a bit more laundry, I suppose, but I can groove to that—One of the newest “out and about” activities for my son is a fitness program led by a couple of brothers (young guys not much older than their clients) who are combining their speech therapy and physical training backgrounds to get kids like mine moving and socializing. Exactly what my boy needs.The first few times we met them, I was reminded that my son can be both eager to try a new thing and highly anxious for the same reason. I showed him photos, described the class, and he excitedly got ready to go…but his attitude soured by the time he had his shoes on, and he morphed into one super-worried kid on our short drive to the park.In the past, I've interpreted his pre-event anxious behaviors – stompy feet, pissy attitude, teary eyes, or hyped-up verbal stimming – as a sign that the outing was too much for him and I should lower his discomfort by allowing him to stay home. I thought I was “listening” to his needs. But cancelling would often result in an upset, disappointed, and still highly-agitated kid (and a frustrated mom – well, what do you want?!?).Now, I've learned that his behavior isn't necessarily saying, “no” – it might simply be saying “slow down, let me get my bearings, I want to try this but I'm scared.” It is hard to watch him work through his anxieties – I still feel like, if it's causing you this much stress, forget it, it's not worth it!But after just a few sessions, that nervous kid is grinning and enjoying his time with his new friends. Practically dancing through his workout—As it happens, my kid is less anxious about getting a vaccination than he is about trying out new activities or wearing new clothes.I took him to get his flu shot at a local drug store, and after a brief visual summary of what we were doing, he jumped in the car without a problem. We had to stand in line for longer than I'd hoped, but my kid was fine, bouncy and chatty and fine. The pharmacist seemed more nervous, concerned that my boy might give her a hard time. He did not. Easy peasy.The wait had been long, and I had snacks waiting in the car to reward us. As soon as we were done, I moved swiftly to get out of the store before his good mood dissipated. But as we stepped outside, my son stopped short, causing the automatic sliding door to bounce in confusion. He half-turned his body and gestured with his open palm back toward the store, his eyes wide and insistent above his mask.Ah, right. I forgot – his dad let him buy some candy the last time we did this. That's why you've been so chill today! It was fun to see his self-advocacy – in an earlier time, he may have just returned to the car and I wouldn't know why he was suddenly so grumpy. But he “told” me, and I was paying attention enough that day to hear his nonverbal request. We returned inside to pick out a Snickers (and practice making a purchase, too), and we did a happy dance back to the car—Speaking of rewarding yourself with candy, we've got a sweet fundraiser going on for my son's day program. Click here to indulge in some See's chocolates for yourself or your loved ones, and a portion of the proceeds will support our beloved Pathway to Work. Open through January 28th. Thanks!And here's how you can shake yourself out of your mundane daily existence, 30 seconds at a time: 30 Second Dance Party!Icons made by Freepik from www.flaticon.com. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

Welcome to It's Like This Issue #17. Thanks for reading (or listening to) my musings about life around here. I know I sound a bit grumpy on this one, but I shake it off by the end, I promise… :)We tiptoe into the holiday season around here.We decorate, just a little. We find a present or two, maybe. We socialize, in moderation. We bake, a lot.When your only child dislikes change, could do without crowds and noise, and has no interest in gift giving or receiving, finding joy at Christmas can be a challenge.In my Scroogiest moments, I say we'd do better to just fast forward to the New Year. Adding extra “to dos” to my everyday responsibilities, not to mention still living under this never-ending pandemic and feeling heavy-hearted for friends who are missing loved ones this year? Bah-humbug, indeed.And it doesn't help me get into the spirit that my son's autism makes it difficult for him (and those around him) to enjoy many of the holiday traditions that once defined the season for me.He has become less tolerant of Christmas decorating in recent years. Making too many changes in our home makes him uneasy. He's much more likely to participate in the un-decorating in January, happy to restore order to the house.When he was younger, my mom and I hoped to pass on our tradition of a special night out to see the Nutcracker ballet. He didn't feel the magic as much; the first act was an exercise – literally – of holding my left leg askew, a barrier protecting the patron in front of us from my son's jiggling feet. My boy opted not to return to his seat after intermission, content to leave Clara still in her dreamland, waiting forever outside the Sugar Plum Fairy's castle.The other hallmark of my childhood Christmases – a modest church hall transformed into beauty with fragrant pine wreaths, candles, and incense, and filled with the fellowship of strangers singing carols together – doesn't hold the same mystery for a child who is hyper-sensitive to all those sights and sounds and smells.Likewise, a boisterous family gathering – with many cooks in the kitchen, rearranged furniture, and loud conversations competing with the football game on TV – is less than merry for someone who wears earplugs to tolerate everyday noise levels. My son loves to see his family, but he flits in and out of the group, appearing briefly to snag a cookie or a grandpa tickle before retreating to turn down our volume.Buying gifts for my son is both difficult and easy. He does not ask for anything and is rarely interested in receiving new things. He isn't eager to participate in a Christmas morning gift exchange – my husband and I will open a few presents, and our son will hover to make sure we clean up the wrappings quickly. Any gift I still insist on wrapping up for my kid (it's just a hard habit to break) will linger unwrapped into the New Year, or at least until he gets tired of me pleading, “What is it? Open your present!”‘Tis the season. We make it what we can. Like most special needs families I know, we find ways to make joy accessible and drop the rest.Each year, I'm hopeful my son might be interested in helping to decorate for the holiday. He will even begin to say things about Christmas as Thanksgiving arrives. Although he no longer plays with the toy nativity my Godmother gave him when he was a toddler, it's sweet to hear him recite the names he learned: “Mary. Joseph. Baby Jesus. Sheep. Shepherd. Donkey. Camel. Wise Man. Wise Man. Wise Man.”But when the bins of decorations come out, he's not a willing participant, so I settle for a few hints of Christmas and leave most of it packed away. Ah, less is better, really, anyway…We won't take him to church, or to the ballet. Even the “special needs night” at the local train park that was our annual tradition for years has fallen out of favor.His need for quiet reminds me that I also crave simplicity away from most of the hustle and bustle, especially as public spaces get noisier at this time of year.We'll take a drive together, or walk in our neighborhood, to see everyone's light displays. We can “go” to concerts or see movies on our TV at home, and if he wanders in and out of the room, that's OK.We won't ask him to pose in fancy holiday attire for family photos, but I can be assured of some level of “dressing up” when he agrees to wear a new-ish jacket or hoodie over his familiar t-shirts.When we gather with family, I'll be reminded that we have the most supportive, kind, accommodating family that we could ask for. They all accept him as he is, offer love in fidgets and food, and welcome him at whatever level he can attend. That's such a gift to us, really.And, I'll fill the void of a mutual gift exchange with my son by indulging him in the one holiday tradition that he truly loves.Here come the Christmas cookies.In the spirit of the season, I will set aside my relentless quest to clean up our diets and encourage healthier eating.I'll play the Nutcracker Suite or other holiday music to set the mood while we follow our family recipes and make a mess of the kitchen. My son will help some, and supervise more, and taste-test every batch.We will practice gift-giving by sharing cookies with our friends and neighbors, my boy always wary that we don't give away too many.We'll gather in small doses with family, wear comfy clothes, and balance out the stress of the season with sugar.We'll head into the New Year fatter but happier.There's certainly some joy in that!Thanks for reading It's Like This! Subscribe for free to receive new posts and support my work. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

Welcome to another issue of It's Like This. If you have a chance, please take a listen to the recorded version by clicking play above - this one includes a snippet of my son's beautiful voice. A rare treat! Thanks for being here.I could hear my son singing from across the house. I recognized the song and couldn't help but smile.My twenty-two-year-old first heard this song well before he could speak or sing the words.I picture him, just two years old, at our “Mommy and Me” Gymboree class, his face glowing and grinning as he scrambles with the other children under a huge brightly colored parachute. We parents form a circle and shake the parachute over the kids to simulate a storm. As the song ends, we raise the parachute up high and drop the sides quickly behind us, scooting under to sit on the edges, creating a bubble of safety and silliness with everyone underneath.Come under my umbrella Umbrella, umbrella Come under my umbrella It's going to storm.There's thunder and lightning And wind and rainCome under my umbrella It's going to storm.While my son was singing of thunder and lightning, I was in my office preparing for a rainy day of another sort.That day most of us avoid thinking about, but for which planning is necessary – especially when you've got a special needs child. Yeah, I've been in that spooky territory of estate planning, re-grouping on all the paperwork we need to have in order – just in case.Included in all the financial, legal, and healthcare-related documents, I'm tasked with updating a “Letter of Intent.” Essentially, this letter is an instruction manual for my kid. It should include everything his team needs to hold this umbrella over his head, to keep him secure and protected throughout his life.The logistical parts of this are tedious but straight-forward. Pages and pages of names and phone numbers, member IDs, account numbers; which medications, what services, where to buy beads and earplugs in bulk.This letter is also supposed to describe our hopes and expectations for our son's future, where he'll live and what will occupy his time, along with anything we know about him that someone else should know: his current likes and dislikes; the meals he's eating (or not); his ways of communicating; and the patterns he expects around the house.Now, I am notorious for leaving overly detailed instructions if my husband and I get away for even one night, writing down everything his providers might possibly need, as if I'm not also a phone call away.But when someone reads this Letter of Intent there will be no option for a beyond-the-grave phone call. So, it feels pretty impossible to include everything I'd want his future caregivers to know.Some things, they'll just learn over time.They'll figure out that he won't wear long pants or shirts with buttons.They'll see that he always keeps a cup of water in the center of his placemat, except if food is present.They'll find out that his amped-up, agitated state one moment doesn't mean he won't be in a great mood in another hour. And vice versa.They'll learn that if there are leftovers in the fridge (especially pizza), he'll likely be up early the next morning to ask for them, first thing.But there will be mysteries.They won't understand why he answers the question, “What does Cookie Monster say?” with a laughing growl of: “Eat your chicken!”They won't recognize the origins of the phrases he says on repeat, like “Give the dog your food!” or “Ernie! Turn the fan off!” or “There she is!” or “But he jumps off.”They won't possibly appreciate the true beauty of a nonsensical phrase cobbled together from picture books and food labels, like “Oreo Cookie doesn't want to come inside and go to beach” (a very rare 11-word statement said very clearly, but only once, despite his mother's repeated attempts to record him later).I want our Letter of Intent to help his future providers see our son the way we do.Not just so that they can better manage his day-to-day needs or be in on the jokes.I want them to know him.I want to tell them about the pre-teen who would roll up the passenger side window to stop his mother and aide from talking across him at school pick-up; and the boy who bounced on an exercise ball through the halls of his elementary school.They'll hear the few words he speaks with intention; but I wish they could hear his first “guh” (for “go”) at three-and-a-half years old, as we lifted one side of the comforter to roll our giggling kid across the bed and back, over and over.I want to show them, even as they watch his stress build up, how much worse our son's rage once was, and how far he's come to pull himself together.When a favorite song plays and they see him shuffle his feet in a hesitant dance, I want to remind them of the little guy who would boogie with his reflection in the sliding glass door.And when my adult son sings of umbrellas and rain, I need them to picture that sweet boy, wide-eyed and laughing, under a parachute.I hope his future providers can feel a connection and an intimacy with my child, understand his backstory, how he learns, what makes him panic or smile or sing.I want to leave my son in the comfort of a circle of caregivers that know him enough to not only provide shelter over him but be willing to tuck in beside him under that umbrella, to ride out together whatever storms may come.How do I communicate the heart of who he is in one Letter of Intent?This letter is going to be the length of a book… This is a public episode. 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Welcome to another issue of It's Like This. Today I've got a throwback for you, a slightly revised version of a piece I wrote 7 years ago, when my son was a young teenager. It's still so reflective of our spoken (and unspoken) interactions today.So, thanks for reading - and please click the play button above to listen, too!(And for anyone who is keeping track of my every other week-ish schedule, I've decided to “officially” scale back to once a month going forward. So you'll hear from me again at the beginning of November…. because, you know, life around here…well, it's like this.)He remembers the paths we walked the year before, along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.  Each day, my teenaged son speeds down the beach, twirling two small rubber snakes in his hands. I stop trying to keep up, but hold back to see how far ahead he will get before he notices I'm not with him. He goes, and goes, and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns around, never coming all the way to me, but just enough so that we are close again, walking on together in the same direction.I spy a tiny speck of red and black crawling up the sand and I pick it up to show him. He labels it quickly –ladybug – apparently unimpressed, and moves on.While he's still close, I point out the dolphins who have arrived again, just offshore, their dorsal fins cresting the waves in twos and threes every few yards. I can't tell if my son looks out long enough to spot them.Two rubber snakes spin over every surface along the beach, the road, and back at our oceanside condo.He declines to come near to the surf when I try to show him the huge crab claw washed ashore, looking unnatural, as if someone on a dinner cruise tossed the carcass overboard after dipping the meat in melted butter.My child – who swam nonstop in the freezing water every spring vacation trip before this – won't go near the waves this time. He is uncharacteristically hesitant and unsure at the water's edge. He still loves to run on the beach, chase seagulls, walk and walk and walk – but he won't get his feet wet.I don't understand his change of heart; no amount of coaxing is getting him back in the water. He says nothing until we are back home after our trip, looking at photos. Then, a song emerges quietly: People swimming in the water, people swimming in the water.... shark coming in the water, shark coming in the water...Because of his autism, my son can't always find the right words at the right time, if he can find them at all. He is often limited to body language and gestures to communicate with us, which we try to interpret the best we can. When verbal language does come, it is often coded and masked. I have to truly pay attention to hear what he's wishing to say.This vacation gave me time to practice this listening—to slow down, just be with my son, and see where he takes me. It helped me notice what I am often missing in our busy, hurried life—that he is throwing me little sparkling clues to what he is thinking.Within his daily babble – streaming scenes from his favorite movies or books or computer games – I begin to notice small words that don't fit in the script, but align perfectly to the situation at hand. When my mother joins us at our condo one morning, I hear the word “grandpa” sneak into my son's rambling soundscape, and I guess that he is wondering where my father is. With his question acknowledged, my kid is visibly happy to have been understood.This pattern repeats in other situations – I start to listen more closely to everything we believed was only “verbal stimming” before. Is his awareness and connection stronger this week? Is it the ocean air, the outdoor exercise, the absence of our usual routine? Or am I just now slowing down enough to hear him?On the beach, I catch sight of a seal bobbing in the waves just beyond where some boogie boarders float. He disappears and reemerges several times before the swimmers notice he is there. When they finally see him, their attention is newly focused, their experience made brighter, more memorable. All they can do is watch and wait, let the seal choose to be near them – if they try to approach him, he'd be gone.Each time I hear my child express what's on his mind – in clips of song or a re- engineered phrase from a movie or book – I catch a fleeting glimpse of all that is just below the surface. In my eagerness, I tend to jump at it too soon, too forcefully, and his silence returns.But if I stay still, listen – float – his words appear.I returned from that vacation recharged to cultivate the patience I need to support my son's still-emerging voice. As much as I yearn to know what he is thinking right now, to have a discussion with him (even about the most mundane things), to ensure that he has the skills to be safe and understood when he's not with me, it is hard and treacherous work for him to find the words.To support him, I have to slow down – channel my relaxed vacation mode mindset – to gain his trust in me as a communication partner, even if we never share anything approaching a “typical” conversation.I will walk the beach with him, or hike the desert back home, following his lead. I will point out what I see, despite his lack of response, hoping he's soaking in the language he can retrieve later.When he's ready to look back, I will be here, believing that he understands and that he wants to know more even if he can't yet form the questions.I will watch for the creative ways he is communicating – at that moment or in the hours or days later – and show him that I'm listening.I will offer what he needs to build his voice and his confidence: more patience, more time, more assurances that someone will hear him. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

On that Tuesday, my two-year-old son woke me around 6:00 a.m., and I groggily turned on the TV in our living room to pop in one of his favorite VHS tapes.He had quite a collection. Bear in the Big Blue House, Baby Mozart, VeggieTales, and loads of Sesame Street. It would still be eight months before he received his official autism diagnosis, but his repetitive interest in these videos was already very apparent.That morning, I was grateful for his avid interest in those tapes so I could catch a bit more sleep before the true start of our day.Before I switched the television's feed to the VCR, the screen filled with an image of smoke billowing from a tall building. It was after 9:00 a.m. on the East coast, and reporters with anxious voices were saying something about an airplane, possibly two. The newscasters were clearly caught off-guard and trying to understand what was happening.I started my kid's video on our only TV set, moving quickly to replace the real-time view of New York City with the bright neighborhood of Sesame Street. I went to my room to turn on my bedside radio, telling my husband that something had happened back East. I laid on our bed to listen, more sleep no longer an option.It was unsettling to hear the radio announcers' fear and confusion as they struggled to keep their voices steady. Within a few minutes, I listened in shock as the newscasters reported the South tower collapse, while the cheery sounds of Elmo's World came from the other room.Later, of course, I would see the replays of the planes crashing, the imploding buildings, the rubble and dust and terror, along with footage of the wreckage in Pennsylvania and at the Pentagon – but I got a reprieve from the visual stress of the live coverage thanks to my kid's videos.I still didn't grasp the full scale of what was happening, and tried to continue our day as planned.  I got our son ready and took him to his new “toddler preschool” at a nearby Montessori school. He'd just started there at the end of August, his first experience in a structured setting away from mom. We were still in that early phase of adjustment that left us both crying at drop-off (and through a good part of the morning). An experience that with hindsight I know was more than just typical separation anxiety.On returning home that Tuesday, I found myself standing in front of the TV, watching the news coverage in disbelief. I called my grad school history department – yes, my afternoon class would still be held – and tore myself away from the television long enough to finish and print out my assignment, a paper that was feeling more and more irrelevant.My son's school called soon after, cutting the morning session short. They were asking everyone to come pick up their children, they would be closing the school for the day. Everyone was on edge, unsure if our country was under an extended attack, worried for relatives in New York and DC. It was best for all the children to be at home, for now.My son's abbreviated daily progress sheet for that day is blank under “Activities.” A scrawled note at the top reported: “Did pretty well. Settled down within 15 min!”Later that day, I walked across an eerily deserted university campus under a deathly quiet blue sky. That silence – all flights still grounded and most people hunkering inside to watch the news – shook me more than anything else I'd yet heard that day.In class, our planned discussion of 20th century American history – which stories should be told and how best to bring them to a general audience – had been upended by the morning's tragedies. We shared what we knew so far, trying to piece together what it all meant. There were still rumors and fears of more planes, more attacks.I wondered aloud why we were there, sitting in class, and not home with our families.Then, fueled by my growing unease and guilt, I committed the ultimate sacrilege, voicing doubt that any of this history we were studying mattered at all, when the world outside was on fire.I remember my professor and classmates looking a little stunned and not knowing how to respond to my heretical language. I'm sure a few of them spoke about the critical place for history, and historians, in helping us understand our past so that we can better shape our future.Which I, of course, believe as well. I was in this program to learn how to collect, tell, and honor peoples' stories. At that moment, I didn't grasp that this day, and the days and months to follow, would be exactly the type of event that historians would be documenting to pass down to the next generation and the next.On that Tuesday, I just wanted to be home with my family, watching Sesame Street.On this 20th anniversary of the 9/11 attacks, the essential work of historians, archivists and curators continues – to preserve, record, and interpret our collective memories of that day and the months and years that followed. You can share yours (and read others) at the Smithsonian's National Museum of American History. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com

Hi, thanks for joining me for another issue of It's Like This. In the previous issue, I was remembering one of the first autism conferences I attended and some advice I was given as a new parent. That reminded me of a more recent interaction – when I was sitting in the other seat. Click the play button above and I'll read this to you!When my son was 10 or 11 years old, I stopped going to most of the autism trainings that I'd been so gung ho about in those first few years. This was due to a combination of financial needs (those conferences can get expensive) and a growing fatalism that there was nothing new being offered.At that time, school was particularly frustrating and home therapies seemed to be stalling. I had watched many of my son's special needs classmates make progress in integrated settings while our child moved in the opposite direction toward needing more individualized and isolated instruction. And as family, we were taking on a whole new area of study – the behavioral health system – as my son's pre-adolescence brought with it some new and not-so-fun challenges.But by the time my son was in high school, I came back to those conferences. I could skip the tracks meant to help the newly diagnosed “catch up” with their peers, but I needed the sessions that could teach me about adolescence and transition to adulthood and well, what now?I was just beginning to recognize that we were in this for the long haul. My son was now at a private school that specialized in teaching students like him; and I'd begun to find a community of folks who were down in the trenches with me – not the ones scrambling all the time to dig their way out, but families who were hunkering down in the dirt, bringing in blankets and wine, and finding ways to get comfortable.I didn't fully grasp how far I'd grown in my identity as a special needs parent until I stepped into the lunchroom at one of those conferences.I grab a chair at a table where a couple of other parents are already seated. I can tell by their piles of handouts that their kids are younger than mine. They are probably suspicious of my slim little notebook. We introduce ourselves by way of the standard parent bio – kids' names, ages, genders; which schools, agencies, doctors.Once they hear that my kid was similar to theirs as a toddler or a first-grader, the questions begin. They are eager to know what “worked” for us – did my son respond to the strategies all these experts are talking about? Well… Yes, at three, my son started talking a little; yes, at four, he did finally get potty trained; yes, in kindergarten, and through second grade, my son was mainstreamed with an aide. They seem relieved to hear from an older parent who can remember the days they are facing right now, and still appear (mostly) sane. But once they start asking about my son's current status, I have to tread lightly. The question of “How's your son doing now?” is code for “Are we going to be OK?”And, if they're anything like I was, their definition of “OK” involves some level of their kids being “indistinguishable from their peers.” My kid is quite distinguishable. They may not be ready for this reality check. I describe how much progress my son has made. I praise him for how hard he's worked and is still working. I check off a list of approaches that seemed to help, and a few that haven't. I skirt around the craters of mental health and social isolation.I walk that line. I'm not going to tell them to “just love” their kids. But I'm not going to give them the doom and gloom either. I smile and say that my son is doing “OK.”These new parents are not satisfied with my vague responses. They probe for some glimmer of positive they can grab onto. It's that old “Rain Man” dance – what is he good at? What's his interest? – because there's got to be something. Right? I respond with caveats: Well, like any teenager, he's very motivated by eating and sleeping and being left alone.No, he's not going to earn a diploma, but his school is wonderful. No, he doesn't have many words, but he's still working on it.  No, he doesn't have any friends, but his laugh is…I see the awkward shift in their gazes. Now they are glancing down at their conference programs, looking for presentations that might offer them more hope than what I'm giving.Of course it stings to see such a negative reflection of my child, how easily he can be seen as not measuring up to some ideal we've created. But I'm not surprised by this reaction – wasn't I in their shoes not so long ago? Hoping my son might have more brag-worthy outcomes? I can't explain to these new parents that their ideas about disability and inclusion will likely change, and their definitions of a safe, happy, and healthy life will broaden.That someday, time will have rushed forward, and they might find themselves in my seat, making the case that their far-from-typical kid has value, too.They might even realize — as I am in this moment — that if we say it enough, it really does begin to ring true:We are doing OK.As we head back to the afternoon sessions, I give these younger parents genuine assurances that many of these interventions they are hearing about will make a difference and I wish them good luck. (I don't add “you're going to need it.”) One dad shrugs as he shakes my hand and says, “Well, you seem to have a great attitude about it.” I laugh. “Well, yeah,” I shrug in return. “What else am I going to do?” This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com