Tomorrow (specifically evening), Speedy turns 8 years old. It’s hard to believe from his rocky beginnings how far he has come.
This was a child who nearly didn’t make it- when I was 25 weeks pregnant, my husband and I were in a car accident. The van slid on black ice across a T-intersection and went off the other side, over a 12 foot drop. First our van went, and then we watched in shock as three more vehicles slid through the same intersection and were airborne overhead (and luckily off to one side of us).
I spent four days in the hospital with internal bleeding, and there was great concern over whether we’d need to leave our hospital to be transported to a facility with a neonatal intensive care unit.
Speedy had other plans, and decided to stay put until he was full term. Whew. Unfortunately, the damage caused by the accident also caused him to be under great stress during labor, and I found myself watching a nurse who was watching the monitors. “Come on”, I implored her to just tell us what was wrong. The doctor arrived, and went pale when she saw how low his heart rate was. My husband and I all but begged her to just tell us straight what was going on, and she breathed a great sigh of relief when we said that of course we would agree to the cesarean section.
Some amount of time later (I really haven’t the foggiest- those medications they give you are spectacular), my husband was telling me that his first child was here and oh he’s so amazing and beautiful. What I didn’t know at the time was that he was grey and not breathing and definitely not responding. My poor amazing stoic husband, after so many years working in emergency medicine, knew exactly what was happening and wouldn’t tell me. Not then.
It wasn’t until many hours later that I would be told the tale of my not really alive baby who they revived. And even now today I recall the shock and the pain of being so close to losing him. Twice.
I have to think that with everything he’s been facing for the past few years that there must be some connection between in utero trauma and his trouble with emotions, attention, and many other things. And we’re starting to explore ways to support him best, keeping in mind that we may never know if this impacted him at all.
At the end of the day, I see this amazing child, this champion of friendship who loves with his whole being, who smiles with his whole face, who throws himself body and soul into everything he does. He wants everyone in the world to be his friend, and he wants everyone in the world to be happy. And what an incredible gift he is to us, to the universe.
What do a lightbulb, a puzzle piece, and the color blue have in common? Well, nothing actually, unless you’re talking about a potent marketing campaign by an organization who markets autism (Autism Speaks) much in the same way that another organization markets breast cancer (Susan G. Komen Foundation).
It’s March and we’ve made it through another winter full of snow days and illnesses and have come to (almost) spring weather relatively unscathed.
With this warmer weather brings an annual event which makes my eyelid twitch: Autism Awareness Month.
Now, don’t get me wrong- I get the need to raise awareness. Which leads me back to the lightbulb, the puzzle piece, and the color blue. While the marketing is strong, has anyone actually learned anything from the Light It Up Blue campaign, the puzzle piece merchandise, the fundraiser walks? Has anyone not already up to their elbows in autism actually walked away with a better understanding when April slips away and May is in full swing?
I’m going to say NO. Because several years ago, I was among the population of people who knew nothing of autism. Because I knew that people got blue light bulbs and wore their puzzle piece pins, but I had no clue what any of that meant. Because I still talk to families new to the diagnosis who feel lost. And because the organization behind that movement really wasn’t trying to raise awareness- they were (and still are) trying to raise money.
Why are their chosen symbols a problem?
The color blue was chosen because the AS founders had an autistic grandson. They literally chose the color because he’s a boy. That’s the only significance. There is a massive difficulty in obtaining diagnoses for girls and women because the diagnostic criteria only considered this to be something found in boys. Autism looks different in girls and women, and this “blue washing” has basically ignored the girls who are fighting for the diagnosis that will help them obtain supports.
The puzzle piece has left the autistic community feeling as though they are looked at as having pieces missing. This is never okay.
I don’t know about the light bulb, other than it was just a clever piece of marketing at the time.
Now, sure, they’ve reworded their mission statement to sound less inflammatory. They’re under new leadership and they’ve even added two autistic people to their Board of Directors. Two. People. But when you dig a little deeper, and I did, you find that their mission really hasn’t changed. They state in their “For The Record” page (I’m not linking here- you can go find it but I don’t want to send people from my page to theirs) that because science tells us that there is no single “autism” that there is surely no single cure. Yes, they actually state this:
So, here is a short list of autism facts and information, to help with understanding/awareness:
Autism is a neurological processing method, not a disease (ergo, no “cure”)
The social “difficulties” that go hand in hand with autism are often a matter of neurotypical people not understanding the many ways in which we communicate (why we need understanding and acceptance)
Sometimes, behavioral issues come about when people are not provided with all of the information they need or the communication tools they need. This can be solved with the help of teachers, parents, therapists, and friends!
Now, did you need a blue lightbulb profile pic frame for that? Would that photo frame on your Facebook profile have done anything to help anyone else become aware? No.
And frankly, when the autistic community continues to very clearly say “AS is damaging and doesn’t speak for me!”, you really ought to listen.
SO. What now? What organizations can and should we support to further autism acceptance and flip the script from [damaging and evil] to [a world of interests, a strong love for friends and family, and an uncanny ability to be open and honest]?
ASAN works to dispel the myths, present the facts, and to help people move out of “awareness” and into #autismacceptance.
I’ll continue the “who to support” conversation in April, but I really needed to get this off my chest.
In April, and every month, I ask you to join me in moving the narrative in this direction. Do you know someone who doesn’t know anything about autism? Help them to learn, understand, and accept the members in their community who are autistic! Get to know the facts, and not the hype. Understand that this is not a travesty, this is not an epidemic, this is a neurological functioning and neurodiversity (the many different types of ways people process the world around them) is a beautiful thing.
It’s been too long, old friend. I’ve been taking a hiatus from, well, everything. If you know me in real life, you know that I’ve been trying to get to the bottom of what’s happening for me medically. Though there aren’t many definite answers yet, I’m working with a great doctor. I can boil it all down to the fact that typing for too long is challenging for me, and I’m working on solutions. Accessibility to the rescue!
Speaking of which, I want to talk today about a really important tool in the world of accessibility. This is the Picture Exchange Communication System, or PECS for short.
PECS are small laminated cards, each with one image and the corresponding word. Typically these are kept in a small binder with the assistance of hook and loop (Velcro®) strips. When someone does not communicate verbally, they can use these cards to request specific items or to carry on a conversation.
PECS have morphed over the years and there are programs and apps on devices which allow people to carry limitless PECS items right on their phones or iPads. For some people, the touch screen of an iPad can be easier. For others, the old tried and true method of holding a card in their hands or looking at the card in their book works best. It really varies, and multiple methods should be tried.
This shouldn’t be mistaken for a Picture Schedule, and I’ll talk about those in the next post.
I am fortunate to work with some really incredible people. One of the people I work with has been utilizing PECS with some people who have limited verbal communication and who often get very frustrated. Well, wouldn’t you get frustrated if you couldn’t express yourself in the way everyone else does, and decisions about your daily life were made FOR you but not WITH you? Yeah. You really really would.
A little exercise: Close your eyes… well read this first and then close your eyes. Imagine that you do not speak. Imagine that you have people come and go throughout the course of your day, all of whom are telling you where to go and what to wear and what to eat. Imagine that these people are not giving you time to make choices- they may ask you if you want to go to this place or that, but they never give you the opportunity to process the question. Now imagine that they get frustrated with you for not answering right away. Imagine how frustrated you might be if they gave up and took you to the place where you didn’t want to go.
Now imagine this: The same person asks you where you whether you want to go to the park or the museum. She also shows you two pictures: one of your favorite park, and the other of the museum. She then waits for you to look at the two pictures, and gives you time to decide. You then point to the park, she asks you again “Do you want to go to the park today?” and you nod. And off you go, to the park.
How different did those two scenarios feel? In the first, you were not given all the tools you needed to communicate- not just the cards, but the time and the patience to consider your options.
In the second, you were provided all the tools. The person giving you the choice allowed you the time needed. She showed you respect and treated you as she would anyone who communicates verbally, she was not impatient, and she reaffirmed how the cards work by then taking you to the park as you’d requested.
PECS provide not just a method of communication, but they also provide information. By showing a picture and a word, and by being followed up by the thing being requested, the cards teach that the person using them has autonomy. And I don’t mean that the person using them is the only one who learns this. The people working to support that person also learn it, and this is important.
So back to the person I work with… I got a little bit derailed there in an effort to get you to see and feel what I’m talking about.
Recently I watched the almost instant success that PECS can bring (again, not necessarily for everyone, but if an iPad app has not been successful then they’re worth trying!). One of the people visiting our office reached a point where he was feeling upset and a bit cornered and definitely overwhelmed. There was work that could have been done ahead of time that might have prevented his meltdown, but that work had not been done to prepare him for what was going to happen. So we worked with him the best we could, and my coworker grabbed his PECS cards. She showed him the one for his house and the one for the building where we work, and asked him where he wanted to go (she used the names of the places as well). We gave him time, and we let him start to calm his body and mind. She asked him calmly one more time, and he pointed to his house and off they went.
That was a really important moment, for all of us. The person who brings him out into the community was amazed at how quickly we were able to help him regulate and calm his body, and how the cards worked despite the fact that the same question had been asked multiple times (without the cards). They work, simply put.
And yet, they’re an under-utilized, under-appreciated tool that supports people with non-verbal communication as well as supporting those who are working to give people the tools they need in order to communicate.
We must meet people where they are, rather than expecting them (unrealistically) to come to us and then getting mad when they can’t. Sorry, sweetie, life doesn’t work that way. Let’s make communication more accessible- the tools are there, we simply need to try them!
Oh- and by the way, this is how Wonder Boy communicated for a couple of years. It changed our world.
I remember a time in the not-so-distant past when I wondered to myself when or if I would hear my youngest child speak in sentences. If I’d ever hear the soft “I love you, mommy” or have a conversation in spoken words with him.
It took me a great deal of time and effort (and study) to come to the realization that communication can happen in many forms, and that you can never truly know what the future may hold. As it turned out, he would speak, and there are days now where I wonder if I’ll ever enjoy silence again…
Part of communication is advocating for one’s needs. We’ve become quite accustomed to the ways in which he advocates, and today provided a perfect example.
He walked across the living room today while the room was mostly silent. He grabbed his headphones, a pair of black and white noise-muffling over-the-ear headphones which do a fairly nice job of reducing nose levels in a room. In this case, the room was already pretty quiet, so I’m going to assume that he was seeking the gentle squeeze, the proprioceptive input that the headphones also provide (his first method of advocating for what he wants and needs).
The headphones have a panda face on each ear, and are just so sweet that I asked him if I might take a photo. “No”. “No?” “No.” And that, my dears, is that. No. He did not wish his photo to be taken. (his second advocacy)
He then asked for a snack, and guided me through exactly what he wished for. This isn’t so much advocating as requesting, but you could count this as well.
It takes being truly comfortable with your space and who it contains to be able to do what he did, and I am forever grateful for the fact that he knows without a single doubt that his voice will always be heard, his communications will always be taken into account, and his requests always considered.
Yesterday, I took both boys to their first dance class- a movement class for kids with special abilities. I was so excited that he wanted to try it out, and they had a wonderful time. We saw a girl who had been in Wonder Boy’s preschool and it was remarkable to see how much she’d accomplished since those days.
When we were getting ready to leave, WB said that he did not want to sign up to return. While I was saddened by that, I also have to respect that he made his wishes quite clear to us.
We must always consider people’s needs, no matter how they communicate but especially those who are not able to communicate verbally- look for other ways in which someone is speaking to you, whether that be in actions or in response to your actions. Take time to meet people where they are, rather than force your methodology and your ideology on them. And for the love of pete, respect people.
I used to have a very idyllic view of winter break. That glorious bit of time when the kids are out of school for a week or more, with the days spent sledding and sipping hot cocoa and making snow people and snow angels and having snowball fights. The very idea of ending each day by a cozy fire with the kids all tuckered out brings a smile to my face.
This is about the closest that I ever get to a fireplace.
And frankly, if you’ve met me, you know that my actual idea of winter fun has nothing to do with being outside in the cold. I’m freezing if the temps dip below 75 degrees. But here we live, in the frozen Northeast, and it snowed early this year. And then the thermometer bottomed out, providing us with wind chills that brought frostbite warnings. Guess what? No sledding. No angels. No snow people. No snowball fights. And I’m really okay with that. I’m not sure where I got that “idyllic” view of winter. It’s not my reality.
When I was young, I could stay out in the snow all day, or so my mother tells me. I think I’ve blocked out this memory to protect myself. I hate the cold so very much.
So what do you do when you have two very rambunctious kids in the house for a week? Let your husband take the week off to be home with them while you go to work.
Okay, I’m kidding. Sort of. I did that, but mostly because he had the vacation time to use, and I did not.
The fact is, it can be really challenging to have any kids home for the week and have it be too cold to send them out to play. The already small apartment starts to feel reeeeeeallly tiny. Have you ever seen Willy Wonka and the Chocolate factory? Think shrinking hallway.
Solution: We can’t let them have too much “tech time” as it’s known in our house, or they start to have pretty bad responses to various things (anything from being asked to take a bathroom break to eating lunch). We tend to restrict tech time anyway, so instead the tactic over Christmas break was to have activities in rotation. I imagine my husband feeling like the entertainment director on a cruise ship: “Okay, everyone, now it’s time to build a pillow fort! At two o’clock you’ll be reading in your room, followed by thirty minutes of video game time on the Lido Deck!” This rotation of things to do really helps prevent the boredom from settling in. Combine this with a lot of sensory activities and opportunities, and I think we all survived it pretty well.
And sure, there was the daily (hourly) argument to break up, and there were good breaks in the middle such as Christmas Eve (lots of baking) and Christmas Day, and spending time together as a family.
Still, I think that after nine days at home with the kids, he was quite ready to return to work yesterday. CubicleLand must have been a welcome sight.
It’s fair to say that Speedy and Wonder Boy, for all of the ways in which they drain us of energy, have also worked really hard and have come a long way developmentally. It’s also fair to say, though for different reasons, that Wonder Boy has been more excited about Christmas this year than he has ever been in his entire life. Since Thanksgiving he was asking when we would decorate for Christmas, and luckily for him we tend to do just that the day after Thanksgiving.
He has been walking around singing Christmas carols and has learned about Chanukah and Kwanzaa, and wants to know why we aren’t Jewish (we aren’t Christian either, but I’m not here to go into the derivation of most Western Christmas traditions…). He has watched all the movies about Christmas, and has visited with Santa three times so far. Let’s just say, this kid is super stoked.
A few weeks ago, my husband came to me and asked me to take December 15th off of work. I looked at him and said “We’re going on the Polar Express, aren’t we?”
I love doing that to him, I won’t lie. Not taking away his chance at a surprise, but being able to guess the secret. He does not like this as much as I do, I promise you.
A mix of incredulity and humor washed over his face, and he asked me to please keep it a secret from the boys. We invited my mother, who has really been our anchor, to join us.
If you’re not familiar with the story, The Polar Express was a book written by Chris Van Allsburg, and it was published in 1986. It tells the story of a boy on the brink of no longer believing in the magic of Christmas. As a 43 year old who still believes in this magic, I have a hard time understanding his viewpoint, but whatever. I believe in Santa and I always will, and you will never tell me otherwise. This holiday, and others like it, bring out a magical love between family, friends, and even strangers. Our homes glitter with lights and kindness and good smells of things that we share with everyone. We open up our homes and our hearts.
In 2004, The Polar Express came out as a movie and many were captivated once more by this beautiful story. Tom Hanks voices several characters, and you can even see a little of him in each of the characters faces.
Across the country, there are towns with active train stations and some of them host “Polar Express” excursions.
When we arrived at the cavernous marble train station, two hours from leaving our house, I was hit with blaring music of the holiday variety. There were so many people- a mix of pajama-clad Polar Express riders and regularly-clothed people about to embark on a trip to New York City. There were people in wheelchairs. There were children with Down Syndrome. There were autistic children, including my own. There were -gasp- people without any disability whatsoever! This was a truly inclusive environment.
Wonder Boy quietly took it all in, as he does, and Speedy happily chattered about this person and that person and OHMYGOSH there’s a mechanical Santa! As we rode the train, Wonder Boy discovered that if he flapped his hands, the lights inside our train car looked very interesting, indeed. Speedy listened for the train whistle and his eyes widened whenever he heard the sound. Actors playing the parts of the characters in the book came around and chatted, letting Speedy chatter at them and kindly answering their questions. Wonder Boy barely said a peep for two hours, and even turned down the cocoa that was offered.
After a two hour ride, Santa finally arrived in our train car, with his elves giving out the “first gift of Christmas” (one of the reindeer’s bells) along the way. The tension was palpable for the boys, and they seemed about to pop when he finally reached our seats. He asked my mother if I’d been good, and then asked me if my husband had been good. He never asked if the kids had been good, because he KNOWS. He always knows.
After the ride, we stopped for a quick bite to eat on the way home. Being the very literal person that he is, and a person who only eats in the restaurant or at home, Wonder Boy refused to eat in the car, insisting on eating when we got home. There is no point in forcing a child to eat in a way which makes them uncomfortable, so I said okay. And at nine o’clock at night, tired and happy, he ate cold nuggets and cold french fries. And you know what? That’s totally okay.
For the last couple of days, a sadness has washed over me. More than washed over me- swallowed me whole and left me feeling like someone had opened me up, removed my insides, and stitched me back up again. To the point where when someone asks me how things are going, I plaster an empty smile across my face and do what I’ve done for years, I pretend. I often get sad during December, but it typically hits me mid-month so I was surprised by this.
Yesterday at work someone asked me “How are you always so put together?”
When I finished laughing thirty minutes later, I admitted to her that my “together” is a facade. I appreciate what she was telling me- I’m glad that my total hot mess of an existence isn’t utterly obvious to everyone- but I had to share with her that this is NOT “put together”. Here’s why I didn’t just simply say “thank you” and move on with my day: so many of us are walking around telling everyone that everything is fine and plastering a big fake smile on our faces and presenting a filtered Instagrammed version of our lives. The result of this is that so many people are sad or struggling or suffering or all three, and are also assuming that everyone around them is perfect and happy and put together. She and I connected over the fact that we really struggle to put ourselves together and get kids out the door each day, let alone accomplish anything above and beyond that.
Later yesterday afternoon, someone else in my office asked how I was doing. “Stressed, actually. Really stressed.”
While that change in approach didn’t take away my sadness, it did something more: validated it.
Sometimes, we are sad. Sometimes we might be struggling. And it’s really vital to acknowledge that, and to go forward from there.
Last night, my husband turned the tables on me, saying to me what I so often recently have said to him. “I’m worried about you” he said, as he rubbed my back. I was in bed at 7:30pm and crying. “Will you please call your doctor on Monday to talk with her about this?”
With that conversation, and having finally opened up to him about being sad and not knowing why, I felt the 1,000-pound weight lifted off of me. Suddenly the loneliness was replaced by the sense that I have someone with me to get to the other side of this. It didn’t remove my sadness, but at least I knew that I had an ally.
As we plow headlong into the holidays, it’s important to acknowledge and validate when you are sad. So many people feel that they are all alone, particularly at Christmas. If you are feeling alone, if you are in crisis and need emotional support, please consider reaching out to the National Suicide Prevention Hotline at 1-800-273-8255 or use the Crisis Text line by texting HOME to 741741.
By the way, the National Suicide Prevention Hotline website (linked above) has something called the “Safe Space”, a series of YouTube videos meant for helping you find calm and get back to center if you are feeling particularly anxious.
And remember, it’s okay to admit that you are sad.