Special Handshake

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I wish there was a special handshake for parents and allies of special needs kids. Something subtle, but noticeable that shows, “I understand what I am witnessing and I am cool with it, and you. I come as a friend.” It would need to be something that is appropriate in all cultures, so it could work on an international scale. Something inviting, like the Star Trek Vulcan salute, or a wink or something. It would really make our lives a lot easier.

This post is a chronicle of a brief social excursion for me, a parent of a child with autism. I write it to commiserate with other special needs parents, and perhaps help others understand (especially teachers and voters) why articles like an entire graduating class giving a silent ovation for a man with autism, matter. If you find yourself rolling your eyes at headlines like that, I definitely get it. I used to be of a similar mindset. I mean, inclusion is cool, but that isn’t how the world works, right? How in the world is not clapping for one kid a big deal? And why should we not clap? Everything is much better than it used to be. This kind of stuff is going too far. What’s next? Who cares?

I want to try to explain why you should care, but it’s a nuanced answer that is best explained with a recent, actual outing. Though we’ve come extraordinarily far, the bar set before things like the Americans with Disabilities Act was set extremely low. If you want to learn more about our country and the world’s relationship with special needs people, please read this incredible book. If you want a quick insight into one family’s daily life, continue on.

Yesterday we went to the library to return some books when we unexpectedly arrived at the exact same start time of the reptile show. Reptiles are a favorite of my kids, but especially RJ, who is on the autism spectrum. Noises, smells, texture, information, etc. can cause sensory overload for RJ and many who have a sensory processing disorder. When you see a person on the spectrum meltdown, it’s not a tantrum, it’s like their processor has crashed because there are too many things running at one time. It looks similar to a tantrum, but it’s very different. A tantrum is a child willfully misbehaving. A meltdown is outside of a person’s control, caused by a myriad of external things.

Since it was a Thursday afternoon, I felt like it was even better because the place surely wouldn’t be that crowded, making it simpler for RJ to succeed in this setting with fewer sensory stimuli.

The room was packed.

I took a deep breath. While I am thrilled that a public library was bursting at the seams, I am still very weary of how RJ will respond to crowded settings. I am not quite as on edge as last year, when he entered mainstream kindergarten. I worried extensively about elopement and social trauma, but it went about as well as it could. Life is starting to get a little easier.

It’s a tricky thing to be a parent of a child with autism. There’s a unique paradox that only the parents seem to know: on one hand we are so proud of our brave, resilient child, but also so fearful of the inevitable cruelty that will cross our child’s path. I find myself on daily alert for cruelty towards RJ, but also remind myself that everything, even cruelty, is a learning experience. I still find myself getting nervous when we attend social events, but am not deeply anxious, like I used to get. This is not just because I am wiser and understand that if I only look for cruelty, that is what I will find, but also because RJ practices a lot with trained professionals outside of the normal school day.

He puts in 15 hours each week at his ABA therapy facility after the normal school day. It stands for Applied Behavioral Analysis, and it’s where therapists track RJ’s behavior and use the data to inform what and how they teach functional social skills. ABA therapy is controversial for some, mainly because it can be done poorly, like any therapy. It has been profoundly transformational for my child because we go to a top notch facility, have consistently attended, and work closely with his team. It’s a huge commitment for our whole family. RJ does not like that he has to go, but he is always ok at the end of the session. There’s no definite end, but this is not designed to continue forever. I digress.

Most kids sat on the floor of the retile show and parents sat in the back. The presenter was pretty funny, and made jokes throughout as he educated kids and parents.

Though nervous to let him be on the floor with his sister, I thought, “I’ve got to learn to let him do this stuff, it’s the only way he will learn.”

The first half of the show he hit it out of the ballpark- I couldn’t believe how well he did sitting on his bottom, listening and raising his hand. “Just like a regular kid”, I thought proudly.

Someone else arrived partway through the show. A beautiful little girl, maybe about 5 or 6, who walked right through the crowd and up front to the reptile presenter. She showed no awareness of the others around her. The presenter frequently had to ask her, in front of everyone, to sit down, to stop touching his reptile containers or the reptiles themselves. She walked around touching other kids’ heads near the end of the show.

I don’t know this child, but I’ve seen this kind of behavior before. RJ has a motor that keeps him from being able to stay seated very long (though it’s gotten much better), sometimes he gets lost in his thoughts, and his compulsive need to touch interesting things make for some very awkward apologies when I explain to the middle-aged woman standing in line why my kid put his hand up her shirt. The way this little girl was behaving was not that of a naughty child, it was of a person who has special needs. I suggest this explanation because of my personal experiences. Without having a child like RJ, I know I would have judged this mother to be negligent and this child to be willfully disobedient. In fact, even with my personal experience, I began to wonder why she didn’t just grab her kid and hold on to her after the fourth or fifth warning by the presenter. This was social suicide for her kid, and frankly, a bit disruptive.

The mom stayed in the back and watched this happen. I must give kudos to the presenter, because he had every right to ask the mother take her disobedient kid out. He didn’t do that, but I could understand how he probably wanted to. I wonder how many times this mother and child got dirty looks and judgmental phrases hurled at them.

I couldn’t help but wonder if she knew she could get help, like ABA therapy, to allow her daughter a better life experience. Maybe she did know and this is just what it looks like right now. Maybe she is in total denial? No, I saw how this little girl was dressed and groomed; this is a devoted, engaged mother who does understand society. But when I looked at the mom, she didn’t look disappointed in her daughter. She saw everything her child was doing, and didn’t spend her energy attempting to look disappointed to please the people she knew were looking at her, like I usually do. I was equally impressed by her, and ashamed of myself.

I was then brought back to the thought I had only moments earlier about RJ and wondered if she had the same thought about her child: “I’ve got to learn to let him do this stuff, it’s the only way he will learn.” Maybe that’s where this mother was, too. If so, she had way more grit than I have. I would have pulled the plug on the social outing way sooner.

We have come a long way from the old days of locking up children with special needs, or attempting to beat their “bad” behavior out of them. It was not that long ago where society as a whole believed children could be born defective, and though we didn’t murder them, we found it socially acceptable to lock them up in facilities that would halt anyone’s progress. If you do not believe me about our history with people with special needs, please read In a Different Key. We still have a long ways to go before we can say we are a totally inclusive society, and even though it doesn’t always feel like it, our culture has made tremendous strides in the right direction.

This child’s behavior was really hard to watch; it’s tempting to want to remove her. But each time we remove someone with special needs from the group, we prevent social progress because we prevent inclusion. At the reptile show, her awkward interjections made us go a bit more slowly, but there was a lot of learning happening. No, not just for this one child, but for the entire group, though I am not sure if the entire group knew. We were learning not just about reptiles, but also about patience, compassion, and empathy. As a teacher, I now think about how often we stop learn “in the moment” learning because it’s awkward and feels super slow and off task. But I sure realize it now that I have my own special needs child, and I definitely noticed it each time the presenter politely asked the little girl to sit down.

Deep down, and I am ashamed to admit it, but I was a little relieved that it wasn’t my kid this time. This behavior is what RJ’s social outings used to look like, though he still does socially inappropriate things. It is not as severe as it used to be. However, for the first time in a long time, I got to be the objective onlooker. This child didn’t hurt anyone. She responded to the presenter each time. It was awkward and slowed us down, but we all still enjoyed the show, and she got to be a part of the group. There were lots of awkward, cringe-worthy moments, but it all worked out.

One interesting fact: to date, nobody has died of an awkward situation.

Sometimes I wish I could just go places with a big, light up billboard right over my head that said, “My son has autism, so that’s why”. I would turn it on whenever that cringe-worthy thing happened. Like when RJ raised his hand to go up and hold the python with a group of kids. I noticed he put his hands in his pockets, which was probably because he really wanted to hold up his shirt and bite it (but I told him earlier during the show he cannot do that and have told him this what feels like millions of times). I was proud of him for finding something else to do with his hands, but then the presenter told him to get his hands out to hold the snake, he wouldn’t do it. We made eye contact, and I gestured for him to put out his hands. Reluctantly, he took out his hands. RJ held up the end of the snake with glee, but I know he was mitigating the desire to squeal, flap his hands, and probably bite something because he was so elated. Though it took him a bit longer, he responded to the request. His progress makes me proud and breaks my heart. He has to do this every single day.

RJ loves to make jokes and he knew that this presenter was very funny. When his time was over, the presenter told the kids to sit down. RJ wanted to be silly with him, but struggles to know when and where this is appropriate. After a few failed attempts to make the presenter giggle, RJ finally took his seat. At least he wasn’t doing what the little girl was doing, which was getting up again and attempting to touch his basket containing a lizard. I believe the distraction helped people not judge RJ so harshly for doing “weird” things.

After the show, we went to the children’s reading area where I ran into an administrator in my school district. He was there with his four perfectly behaved children. I introduced him to my kids, my neuro-typical daughter said “hello”. RJ reached out to shake his hand, then told him he doesn’t shake hands, then offered “knuckles”, then shook his hand, then told him to do knuckles, then he closed his hand over the administrator’s hand, then he wandered to the back of the reading room.

*cringe*

I wish I had that light up billboard right then. But awhile ago I decided to no longer explain to people that RJ was on the autism spectrum whenever something like this happened because: 1. I don’t think many people actually know what that explanation means and 2. I know that RJ notices EVERYTHING, even things cannot be seen. When I act disappointed in something he cannot help, I am sending him a powerful message that who he is isn’t right or good. I know I get a lot wrong, but I’ll be damned if my kid gets this message from his mother. That’s what advertisements and social media are for.

We finally went to the back of the children room where the mother with her little girl were reading. The mom was struggling to get her to hold onto a book and look at it, something RJ still struggles with but is getting much better at. I noticed the mom spoke to her in Spanish, and the little girl answered in English. I was impressed by her dual language. I wanted to go say hello to the mother, but I didn’t know how to do it and wondered if she was fluent in English. I knew some Spanish, but if I was going to connect, I feared my Spanish skills wouldn’t get the job done. I wanted her to know I understood the behaviors I was witnessing and that I thought her little girl was great. I tried to make eye contact to at least offer a smile, but it seemed the mother either didn’t notice me, or didn’t want to even go there, which I totally understand.

Social outings are extremely exhausting for me even now with how much progress we have made. I know they are exhausting for RJ too, and usually he goes to his room and lays down with his animals when he is done.

This mom would have no way of knowing if I was friend or foe. I’ve been chastised by a perfect stranger for “neglecting” my child who was behaving in a socially inappropriate way. I’ll never forget it and would never want someone to experience that either. I suspect this mother has had this happen to her more than once.

RJ tries so hard every single day, and succeeds a lot. And he fails sometimes, too. Because he is 6. Because he has special needs. Because he is a human being. We push him harder than any other kid I know. Could you imagine if someone tracked every one of your behaviors and made you work on the aspects that caused you personal or social distress? I would hate it, but it might also be awesome. But I would also wonder what gives this therapist the right to make the rules on “what’s allowed”. I might understand I need help, but might also be frustrated I have to make adjustments to who I am because society as a whole will fundamentally misunderstand me.

This is the paradox of raising a child with autism: you know they are brilliant and awesome exactly as they are, but they do need to respond in a socially appropriate way to the world around them if they ever want to thrive and have a chance at independence. There needs to be a way to explain briefly to people what sensory overloads are so people quit judging behaviors. Their judgement seems to be the ultimate factor in determining if a child like mine is worthy of inclusion. This fact is why you see autism awareness stuff EVERYWHERE. Because parents like me are scared. And tired. And we are dependent on you to help our kids.

I wish people could also consider what happens before the odd behavior, or at the very least what the function of the behavior is before they determine a person to be “bad”, or “weird”, or “naughty”. Right now, this is not considered to be relevant in the general population. Until that kind of thoughtfulness is pervasive in our society, kids like mine will live on the fringes. Until that day of sincere daily inclusion comes, I will keep writing to try to make the world a better place through education.

On a more basic level, I wish we had a special handshake or signal for the day to day activities to help families move through the world of parenting a child with special needs. Something that says, “I get it!”. It would help me so much.

Any ideas?

The Getting Your S*$@ Together Series

Day 1

Is this scene the height of my madness or glory?

In this series of “getting your s$#@ together”, we will refrain from leveling our homes, and instead determine three things we are just going to do and that only cost time and effort, not actual money. 

As I take this picture, it’s 11:24pm on a Tuesday night. Alone, I’ve moved both of the couches as well as the bookshelf to new locations, and taken almost everything out of my cupboards.

Only time will tell how I will be remembered in the annals of history. 

“How did she get here?”, you might be wondering. 

Perhaps it was the several cups of coffee I drank around 4pm that caused me to fully accept that summer will soon end and I must carpe diem. Or perhaps you might say carpe noche. Carpe nochem? In the times I am living, my knowledge of Latin is of little consequence. 

I need to tell you something precisely because it is 11:24 pm on a Tuesday night. It’s a desire that dwells deep within my suburban soul and gets highly aggravated whenever I watch HGTV or go to someone’s house who looks like they know what their doing. (Spoiler: this is one of those shallow/deep shares.) 

Here goes…

I desperately hate many things about where I live. For example, this awkward, too small rectangle living/dining room doesn’t quite fit our needs but maybe could if I had like $10,000 to “do it right”. I despise the (not pictured) tile on the ground juxtaposed to the peeling laminate. The half-painted bannister mercilessly mocks me on a daily basis as I enter and exit the building. The carpet in my bathroom is absolutely repulsive. There’s also a tile that falls off the side of the bathroom vanity every day. I dutifully place it back on because I sincerely feel like this experience is somehow the universe teaching me a lesson. The white caulking on the kitchen sink is tinged black with what I presume to be mold and I frequently wonder if maybe it is silently killing us. We might have termites. Or definitely ants. I could go on but I won’t. This is our house, and I am supposed to call it a home. 

I just don’t know where I need to start. And over a short period of time, I fall down the rabbit hole of one project inevitably leading to a bigger one, until I get so overwhelmed I quit trying all together.

I dream about knocking it down with a wrecking ball. I dream about it daily and I go pretty deep. It’s like a trashy romance novel that you hate but you can’t put down:

She sits on the hot wrecking ball machine seat, smoking a cigar, tugging the joystick to and fro with reckless abandon. And then she suddenly realizes it’s too much work to knock it down in this way. Exasperated, she reaches into the chest pocket of her overalls, searching her heaving bosom for a single stick of dynamite. Finally, she finds it and grabs one stick from the bundle. “Nay!”, she reconsiders, and grinning devilishly grabs TWO sticks. Lighting them both with the end of her cigar, she throws them through the open front door, and blows it all up. 

The end.

(I need to do a fact check if it’s possible to light a stick of dynamite with a cigar end and if two sticks would get the job done. Remember there are no bad ideas in brainstorming). 

Or even better than my trashy homeowner-romance novel- a brief poem of sorts

One day she learns that only her house

Has mysteriously burned to the ground. 

No one is hurt 

and 

The insurance company is extremely generous in the reparations. 

The end. 

In my highest highs, I recognize that it’s mainly my attitude and the food I produce that make any place I live a home. In my lowest lows… well, you actually read what plays through my mind. 

But there’s a sweet spot. 

You know what I am talking about- where you are so antagonized (and maybe kinda jacked on caffeine) that you determine around 10pm  on a Tuesday you’re just going to “do the thing” and clean/organize/build/demolish whatever the hell is on your last nerve. And then you go all in and pull all the crap out of the cupboard and finally get started instead of hating/dreading/avoiding whatever the thing is. This post is about how you get to the sweet spot, but try to avoid all the aforementioned drama and anguish.

Now listen. I am an all-or-nothing kind of gal. If you tell me there is a half of a pizza left, in my mind, that’s more a challenge than mere information. I’m an “eat the whole sleeve of cookies” type of person and I am not one of those people that pretends to be that way and then is really not. Those kind of people are the worst people. I have no middle ground on these kinds of issues, so if I am ever with you and refrain, please know I am definitely not being coy or modest, but attempting to avoid the sorrow that inevitably follows eating the sleeve of cookies. I digress…

In this series of “getting your s$#@ together”, we will refrain from leveling our homes, and instead determine three things we are just going to do and that only cost time and effort, not actual money

I’m no expert, but I’ve followed enough social media people to know that if you call anything a “series” the gravitas of the occasion goes up at least tenfold. If you could amp up the gravitas of “getting your S%$# together”, why wouldn’t you? 

This series will last until August 19th, the day many return to school. 

I am here to tell you that I have learned from a lifetime of an all-or-nothing mentality. I’ve evolved from dozens of failed DIYs from all nighters beginning in the third grade, to dying my eyebrows alone with no real sense of how important timing is, to landscaping hardpan with no motorized tools. 

All or nothing doesn’t get me very far. It takes me to a deep, dark place of self-loathing, but it doesn’t really get me what I want.

I get so overwhelmed by my “blow it all up” mentality- when I want to do something extreme in order to make myself feel better “quickly”. For example, an actual, real thought that I genuinely ran through my brain today was when I began to believe that I could actually hand paint my entire exterior in the four days my husband is on a trip whilst I am at home with my 5 and 6 year old.  “I shall surprise him”, I whisper to myself as I clean the bottom of my pint of Ben and Jerry’s with my spoon.

This is the point of my delusion when I usually begin to accept that I am in one of my “all-or-nothing” spirals, and I need to transform that energy into something more manageable (and that will also keep my important relationships in tact). 

So like the ancient Greeks- at least in the circumstance of homeowner tasks, not in their position on women’s rights- I will adopt their fervent devotion to moderation when it comes to the tasks I take on.

Yes, this single act of discipline, this hedged attempt to slowly conquer my house into something I eventually will be proud of, shall serve as the tiny pebble that will become an avalanche of productivity and organization! This is merely step one!

*crowd cheers*

We shall call this step the “Get Your S$%#! Together Series” wherein you pick three realistic things to complete by August 19.

I guess what I am trying to say is that the day you dynamite your house is never going to come. Quit wanting to blow it all up or for the “day” to come. It never just happens. This truth doesn’t just go for shallow DIY homeowner stuff. This is also weight loss, relationships, work issues, social justice, educational reform, etc. But that’s another blog post all together.

We will never have three magic wishes from the Genie, either. You think one day you’re going to roll into Agraba on an elephant with music blaring and an entire city admiring you? No ma’am. 

Not today. 

Not ever! 

Look, maybe one day you will get the magic genie. And by that I mean you get on Ellen. She’ll unexpectedly call you up and tell you she’s going blow up your house for you, and that you and her and Portia get to pick out all new things. But I am not holding my breath for that day to come- (but Ellen and Portia if you’re reading this please know I would love nothing more and this is my expressed written consent…)

Here’s what we can actually do today: start small. Pick three things (right now- don’t worry- you can do more later) that are manageable and that you could complete in a month. Let’s commit and check in on each other in the comments. Here’s mine:

  1. Reorganize the living/dining room (so that it doesn’t look like the above photo)
  2. Paint the entire stair rail (it doesn’t cost me anything because I already have paint and tools needed)
  3. Organize the linen closet

I end this post at exactly 12:30am and I realize that I still have the living room as a complete disaster. I need to finish before everyone wakes up tomorrow. Since my glass is now half full, I don’t think of this as a total disaster, rather, I am getting a really early start on this whole “get your S$#@ together” thing.

Best wishes my friends! I will see you on August 19.

“Tiger Livy” is Available Now!

Thank you for all your support! The e book, paperback and hardcopy are now available on Amazon or your local bookstore can order for you. If you’re in Central California, consider supporting Petunia’s Place or Vivily Vintage Handmade, as they carry the book there.

This book was inspired by my niece, Livy, who was diagnosed with a rare disease known as juvenile dermatomyositis or JM. But this work was also designed to help all children and their families struggling with chronic illness. To make this book, I worked with Livy’s family, doctors,  and some perfect strangers in order to provide a small bit of hope. Here is a media segment explaining more or go to tigerlivyproject.com to see more.

To our team’s knowledge, this is the first children’s book that attempts to discuss the mental, physical, and emotional challenges that come with any serious disease. The magic of this book is that it also touches on how one heals. Livy’s grit, imagination, medicine, nutrition, and love restore her health and transform her into a leader.

Thank you for all your support. It means the world to us!