My autism acceptance in practice

 

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Last Monday morning.

I shuffle into the boys room to grab them something to wear for the day as always. I’m not a morning person. The cogs in my brain grind slowly in the morning, but I begin to put together the pieces of what I see. Charlie is still peacefully wrapped under his pile of blankets sound asleep.

Charlie. Time to get up, my love. You’ve gotta start getting ready for school. You must have slept in today.

Charlie is a morning person. He happily springs out of bed everyday at some horrid hour. He usually just gets his iPad and hangs out in front of the heating vent until I get up and start the Let’s Get Ready For School band wagon rolling.

This morning a combination of the time change and a lingering chest cold have erased his morning iPad time. We need to start right into getting ready if he is going to make the bus.

But, this is not what we do.

Charlie heads downstairs and slumps in front of the heating vent.

I didn’t get my iPad time. It’s not fair. He repeats over and over, not moving.

I tell him he can use it now while he eats his breakfast. We have some time for that. He sits, motionless, the iPad I try to hand him lies unclaimed on the floor between us.

It’s not really about the iPad time, of course. It’s about Routine. Predictability. It’s about the beautiful ever flowing and repeating patterns of life.

Spring. Summer. Autumn. Winter.

Red. Orange. Yellow. Green. Blue. Violet.

Ipad time. Breakfast. Brush teeth. Clothes. Shoes. Coat. Backpack. Bus.

It is creating order from chaos.

I’m sorry, my love. I know it’s disappointing. I will make sure we do better tomorrow. But, today I really need you to start getting ready.

I didn’t get my iPad time. It’s not fair.

I hear the clink of Tommy’s cereal bowl as he places it in the dishwasher and feel my anxiety rise as Charlie is clearly not moving.

Listen, Charlie. I will make you a deal. I don’t have a way to give you back time this morning, but I can give you extra screen time after school. That way everything will be equal just in a different order. Deal?

“Deals” are what we have done with Charlie as long as I can remember. We find a middle ground. We each have a stake and a responsibility in the outcome. It’s worked really well until this year when someone involved in his care seems to have made some poor decisions.

Charlie’s eyes widen at me in annoyance.

I don’t do deals anymore. Deals are what adults say to get you to do what they want. Deals are lies.

I can see I am not going to solve this right away. I stand up, take a deep calming breath, and walk away.

I can yell, scream, or threaten punishment to get him to do what I want. But, it won’t really work. I know this, not because I have some deep soul connection to my son, but because I have done it. I have parented the way I thought I was supposed to. I have laid down the law. I have bullied my son into compliance. In doing this I have managed to deliver an emotionally distraught child to school on time. I have also manged to teach my child that when I tell him it is not okay to threaten people to get his way, I do not apply that same standard to myself.

It’s not even remotely who I want to be. And more importantly it is not what he needs.

So this morning I rise from the floor, take a deep calming breath, and walk away. I remind myself of the simple yet sage advice an autism mama friend, whose children are further down the road, gave me a few years ago.

Some mornings he won’t get on the bus. It’s okay.

Whenever I write about autism acceptance, I inevitably hear from someone either telling me how sad it is that I have given up on trying to help my son or how nice it must be to live my hearts and flowers version of autism. I struggle most days to find the right words to respond to people’s comments, but I admit these ones always really throw me because both ideas feel so far removed from what I believe autism acceptance means.

One of the beautiful things about acceptance is it’s pure simplicity, really.

To me, acceptance simply means I work with my son, not against him.

It means I don’t get to decide what the standard is for what is an acceptable reason to be distressed. I don’t get to decide that because the routine being out of order wouldn’t bother me that it shouldn’t bother him. I don’t need to share his views on this event being upsetting. I don’t even need to fully understand why it is. I just need to accept that for him the change in routine is simply not something that he can get over just because the bus is coming. I need to accept that he needs to have the time and space to right what feels wrong before he can move forward.

So this morning I rise and walk away. I busy myself with getting Tommy out the door and give Charlie what I hope is the space to work through this himself. The bus comes and goes and Charlie remains curled in front of the heating vent.

I squelch every urge I have to push the issue with him. I want to tell him it’s not okay to miss school. I want to tell him we all have our responsibilities in life. Instead I plant myself in front of my laptop and read a few blog posts and out of the corner of my eye I see him dart to the refrigerator and grab a loaf of cinnamon bread and head back to the heating vent.

Quiet. Quiet. Stay the course, I tell myself. I start paging through the New York Times online, distracting myself with the news of the day, until eventually I hear the rattling of Charlie’s dresser drawers upstairs. A few minutes later he finds me at my laptop. He is fully dressed and has his iPad in hand.

I’m going to watch Mythbusters the mysterious exploding boom episode. A boom doesn’t just have to mean a sound. Then I am going to go to school.

He retreats to another room at this. I follow him. I am feeling anxious again. I need to get started with my workday. I know better but I say it anyway.

Can you watch something shorter than Mythbusters? School has already started and I really need to get to work Charlie.

He does not look at me. He continues towards his heating vent and says softly to me or maybe just to himself.

I’m going to watch Mythbusters the mysterious exploding boom episode. Then I am going to go to school.

With that, I know this is the wrong battle to wage. I retreat. I head for my laptop and log into my work network beginning my workday to the background sounds of what I assume to be the mysterious exploding boom.

Soon enough Charlie appears before me dressed in his coat and backpack.

I’m ready to go to school now, Mommy, he says with the sweetest smile. Do you need some kisses to start your day?

I think I do, Charlie, I say as we head for the car. He will squeeze me tight around the waist, planting loud smacking noised kisses all over me.

It’s ten a.m. on the dot when we arrive at school. We walk in the main doors to find his class in progress to the auditorium for an assembly. I look towards his teacher to offer an explanation for our tardiness, but she is not looking at me. She is beaming at Charlie and he at her. She pulls him into a hug and tells him she had missed him last week when he was home sick. He happily begins to tell her there are rules about being fever free for 24 hours before you can return to school that he had to follow. They head off, arm in arm, neither looking back at me.

Charlie missed an hour and a half of school when all was said and done. But, in that hour and a half he figured out on his own how to right himself when something unexpected was thrown at him.

This is what we say we want our children to learn. Problem solving.

“Great Day” was the note that came home in his communication log at the end of the day.

The next day I would wake up early to be sure Charlie was up and got all the time he needed.

But, that would be the next day. This day, this was a great day.

 

 

 

 

Planning

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We’ve had a week that has been marked primarily by battles for independence. A week in which the reality that a family is simply not a democracy in which everyone always gets an equal say in decision making is not sitting well with Charlie.

They are in so many ways the typical, epic battles of growing up. Battles for control I remember all too well being on the other side of as a kid. I remember thinking how unfair it seemed that my parents got to do whatever they wanted and I had to always do what they told me to do. I suppose the ironic ins and outs of these arguments might almost be comical if they weren’t so darned draining now that I find myself on the parental end of them.

Amidst this backdrop, perhaps not so coincidentally, we have begun the process of transition planning for Charlie to move on to third grade next year. In our school district this will mean a move to a new building and an entirely new team. It is a system that seems absurd, if not down right cruel for a child, like Charlie, who struggles so profoundly with change. But, it is the system we have to work with never the less.

I sent an email to an administrator at the new school yesterday requesting we meet informally, not to plan transitions or goals or supports, but just to get to know each other. A meeting to let her see who we are as a family and to talk about who Charlie is outside of the list of assessments and reports that would soon land on her desk. I was at my laptop, busily wordsmithing the email in an attempt to strike the right balance of friendly and open yet resolved in 5 sentences or less when Charlie came over to ask me about something.

I took the moment to remind him about the new school next year and let him know we were starting to plan all the ways that we could make sure he would feel comfortable there. I asked him what he thought was important to make the new school work for him.

I am not sure what I thought he would say. To be honest his feelings about school these days are a bit of a mystery to me. I know his relationship with his teacher and a couple of other adults at the school are very important to him. I know the structure and routine of the school day are very comforting to him. I know he takes a lot of pride in his school work and gets very concerned about things that might keep him from being able to complete an assignment once he starts it. I know recess is his favorite time of the day, but that he does not feel he has much in common with any of the other kids and prefers to keep mostly to himself.

As if he had been waiting for me to ask him all along, Charlie did not skip a beat in answering me. I’m going to need someone to be my helper like I have now, he said. Then he proceeded to name the three 1:1 aides he has had over the last three years. I’ll need someone like them to help me with things.

I was struck by his deliberate naming of them all as he has vastly different feelings about each of them on a personal level. But, it was not the people or his relationship with any of them he was referring to. It was my boy, the same one whose quest for independence has been on warp speed lately, letting me know that navigating his school day was still more than he felt able to do on his own.

As I always do when I get a kernel of insight from him, I pushed for more. I asked him in as many ways as I could think, to tell me what specifically they did for him that he wanted to be sure carried forward. Charlie replied each and every time that he did not know how to explain it.

We had purposefully asked his aide to stand back this year and give him more leeway to function independently. Independence, of course, always being the goal. Being able to remove the 1:1 assistance has always been the goal.

There is so much of what I don’t know of how school feels to Charlie tied up in his request to continue his 1:1 aide. I want to spin through a bunch of possibilities of what I think it could mean, but at the end of it all, I am still left with the reality that I truly just don’t know what a school day feels like to him.

What I do know is that when he has been able to articulate what he thinks he might need to make a situation work for him he has never been wrong. I know that eliminating the need for that support will continue to be the goal. I know independence will continue to be the goal. But, I also know that Charlie will continue to take the lead in letting us know what that independence needs to look like for his success.

Two sides of the coin

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Just before the boys turned two a local friend dropped off a mini van full of hand-me-downs for us. Amongst the boxes of clothes and toys was a tiny plastic training potty. Charlie latched onto it immediately. Assuming we were nowhere near ready to attempt potty training yet, I explained to him the best I could what it was.

He was not speaking yet at that point but he was quite proficient with grunting and pointing. He began excitedly dragging the little potty back and forth between the bathrooms repeatedly pointing between us and the toilets and then him and his diaper and the tiny potty, grunting wildly to illustrate the connection he had made.

We praised his discovery and assumed he would move on to exploring the rest of the boxes in search of new treasure. But, Charlie had different ideas. He set about immediately to potty train himself. Over the next month, The Professor and I stood by rather awe-struck as we watched Charlie tenaciously, methodically rid himself of diapers for good.

Now before those of you who did not have potty training quite so easy throw something at me, let me tell you why I tell this story. Before Autism was ever a word that was spoken in our home, The Professor and I would make note of this determination and drive Charlie had and remind ourselves of how it had two sides. It usually went something like this:

After what felt like the millionth time of finding a heating vent unscrewed from the wall and asking Charlie not to do that anymore, we would turn to each other, take a deep breath, and say, Tenacity! That will be a great quality when he is an adult! It’s a good thing. Right?

Over the weekend I took the boys to a hotel for the night, just to shake things up a little and get out of the house. We’d gone swimming in the hotel pool for the evening. I’d even gotten in the pool with the boys this time. We’d raced each other, they’d hung onto my arms as I ran them back and forth across the pool and tossed them through the air repeatedly.

It was the kind of memory I had been hoping to make on the outing. When we finally left the pool a couple of hours later we were all smiles, but I was moving pretty slowly. Charlie was what felt like only a few steps ahead of me. But, as I walked out of the pool entrance into the elevator  lobby I saw the doors of an elevator closing behind Charlie, while Tommy stood staring at me with a look of pure terror on his face.

Mommy, he got on the elevator. I told him to wait and he got on anyway.

My heart leapt through my throat. I stood in front of the elevator for a moment hoping he wouldn’t push a button and the doors would open any moment to reveal him standing inside. But, the lights over the elevator showed it was slowly climbing. 12th floor, 13, 14…..

Crap.

17,18,19….

I began to pace, trying to part the fear clouding my head and figure out what I should do next. There were 45 floors in the hotel. There was no way I could find him easily if he left the elevator. Should I run for hotel security? Should I wait here in case he remembered the floor where he left us and came back? Should I go up to our room and wait and call security from there?

22, 23, 24……

Tommy was tugging on my arm begging me to find Charlie. I tried to seem calm, as I know how much anxiety Tommy has when he doesn’t feel I am entirely in control of a situation.

Think.

28, 29, 30……

The elevator stopped at 30 and stayed there.

30 was our floor.

When the light continued to stay on 30, I realized he’d purposefully gone back to our room.

Of course.

After what felt like a millenium another elevator finally showed up. Tommy and I hopped on and I stood, furiously tapping the 30 button as if my very tapping could propel us up the shaft.

When the doors finally opened, there he stood, waiting for us, grinning ear to ear at his own independence. The second I saw him the dam burst for me. I grabbed him. I hugged him. I screamed at him. I hugged him some more. I stumbled through a whole bunch more What were you thinking….. Don’t you ever, ever again…… I hugged him some more. I cried. I told him how scared I was that something might have happened to him. I reminded him of all the discussions we had had about him never walking onto an elevator until we were all ready to get on together.

At the end of it all, however, Charlie remained steadfast in his conviction that my worry had been unfounded because he knew exactly what he was doing. The fact that he had in fact ridden the elevator alone without anything going wrong was to him proof positive that he had been correct and I was simply being illogical in my fear.

So, here we sit, two sides of the same coin.This independent, tenacious boy of mine. The one who has initiated every step towards independence on his own. The one who potty trained himself, the one who long ago insisted on dressing himself, picking out his own clothes, showering himself, using the microwave on his own. These are wonderful things.

But, the last two days, like so many in our community, my heart has been heavy with thoughts of Avonte Oquendo. I think of the times like this one at the hotel where Charlie has taken it upon himself to be more independent of me then will ever be safe for a seven-year old, no matter how logical, smart, and mature he may be. I think of how I have yet to find an argument for why he can’t do these things that he will accept as valid.

I think of all the things we have taught him to do if he does get separated from us in public. I think of how none of it feels proactive, it feels more like acquiescence.

I think of these things and I worry.

I know the way to solve this is to work with his need for independence and logic. We certainly give him free rein to exercise his independence in any situation where it is safe. But, we don’t yet seem to have gotten the right answer.

 

A little thing that is an every thing

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I haven’t written here for a while.Whenever I go a bit without posting I start to feel, for some reason, like I should have something momentous to share when I finally return, which sort of compounds the whole not posting thing.

But, then today there was a little thing. A little thing that is an every thing. A little thing I knew I had to share here.

I was dialing into a conference call for work today when I noticed a call from the school on my other line. Seeing the name of the school on my caller id never ceases to strike fear into my heart so I immediately hung up and answered the call.

It was the school social worker, who by now has learned to start these calls by saying Everything is fine, I just wanted to let you know…….

Relieved, I asked if I could call him back because I needed to be on a conference call. He said there was no need to call back he just wanted to update me that he had a boy he was working with, a grade younger than Charlie, who was struggling with fitting in at recess and he had asked Charlie to help him out.

Suddenly I wished this 5 minute call could go on forever. I had so many questions. I wanted to hear all about this. But, with the second ping from my boss asking me where I was, I hung up in a daze and went back to work.

I tried to not make it my first question when I saw Charlie, but I may have not succeeded fully in that.

Is there a boy at recess you are playing with now? Did Mr. H ask you to play with a boy? 

Yes.

Can you tell me about him?

He is a boy and he feels like no one wants to play with him and no one likes him. But, I like him. So, I play with him. And he is a nice boy. And nice to play with.

What do you play?

Mostly we collect ice. That’s all about that.

Oh. Okay. I’m really glad he has a friend like you, my love. You’re a good friend. You know that?

I know.

And that’s all about that.

Oh, except that it’s this great big ball of awesome beautiful.

And my heart feels like it just might overflow and break at the same time trying to take in this whole great big ball of awesome beautiful.

Our kids have a lot of strengths. A lot.

All of them.

And if we are doing our jobs as parents, as educators, as human beings

Then we are using those strengths to build our kid’s self esteem.

But this…

Pulling something out of the deficit column…

Twisting it, turning it, looking at it from another angle

And saying no, I don’t buy it, there is more here than meets the eye.

I don’t accept that this kid is lacking in social skills.

Not being able to read social cues and experiencing and interpreting the world differently is not the same as not being able to be a good friend.

Here is a kid who is friendly, who does not judge, who has empathy (yes, I said empathy) for what it feels like to be an outsider.

Here is a kid with a lot to offer socially.

Imagine what it must do for the self esteem of a child who has been told his whole life he is a failure at a thing to be given a way to shine and to lead at that very thing.

Imagine that.

Hands

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If I have a farm when I grow up, I’m going to do the real work. I’m not ever going to cook for people.

I am eight years old. I am full of eight year old wisdom, which I share generously with my grandmother as I set the lunch table for twelve.

Soon the men will come in from the field for lunch, in a rush of noise and commotion, consuming everything we have spent the full morning preparing. Then, as quickly as they came, they will be gone, leaving in their wake the scent of wet earth and tobacco and a pile of dirty dishes.

I’ll just hire someone else to cook for me. I’m not going to have a husband. I’m not ever going to wash anybody else’s dishes when I grow up.

My grandmother softly sings the German songs of her childhood,  patiently listening to the proclamations of the thirty fifth of her thirty eight grandchildren as she rolls out the dough to make noodles.

I watch her hands, the ones I had seen hours earlier snap the neck of a chicken and pluck it’s feathers before I even had a chance to bemoan the origins of our dinner. I watch as her hands guide the rolling pin across the dough, the muscle and sinew of her forearms popping up with each press forward. At eight years old her hands seem, to me, a mass of gnarled bone and veins under the thinnest paper layer of translucent skin.

Her hands tell a story of a lifetime of hard work spent in the care of others. It is a story, the depth of which, at eight years old I am not yet ready to see.

I thought I might be a secretary once, she says finally.  I went to business college for a bit….when there was money. I liked to type. I was pretty quick at it.

Gramma, you should’ve done that. That would be cool if you’d had a real job. I’m not ever going to be a secretary. Somebody else can be my secretary someday.

She lays a calloused and flour-dusted hand gently over mine, guiding my path as I gingerly run a knife down the length of the dough.

We all find our place eventually, my love, the Lord sees to that. You’ll find your place.

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I’ve sent the boys into their play room to pick up. There is plenty of banging and crashing which denotes our version of cleaning. Despite the fact that the cleaning lady religiously comes every other Tuesday, each week I manage to forget until the last minute when there is no hope of putting things away correctly and cleaning simply ends up meaning getting stuff off the floor so she can vacuum.

Charlie isn’t doing any work!!!! Tommy calls from the play room.

I sigh and head off to intervene. I find Charlie sitting on the floor with a pile of blocks stacking them neatly on a shelf in categories of size and color.

He’s just sitting there doing that and I picked up half of the whole room already and he isn’t even helping or doing any work and it’s not fair that I have to do everything and he isn’t even helping.

Charlie ignores him and methodically continues his stacking.

SEE MOM! SEE! He doesn’t even care.

Hey Charlie, we don’t really need it to be in order. We’re kind of in a rush, can you just throw the blocks in a bin and move on so we can finish, my love?

Charlie ignores us. He continues with the blocks. Red. Orange. Yellow. Green. Blue. Purple.

I tell Tommy he can be done and I will help Charlie finish the rest of the cleaning. I sit down on the floor, watching Charlie for a second, as his long thin fingers trace the grain of each block before neatly placing it in it’s proper place. Red. Orange. Yellow. Green. Blue. Purple.

He turns to me at last, joy beaming from his every feature, See how nice it looks now, Mommy? Everything is in order.

I sit back for a second, smiling, as I watch his tiny hands slowly, patiently creating order out of chaos one block at a time. Red. Orange. Yellow. Green. Blue. Purple. This is what he needs to do. This is what we will do. Each block in it’s place.

I think, as I watch him, of all those who came before him. I think of the things their hands longed to be doing. I think of the flapping, the snapping, the finger flipping, the sorting, the organizing, the pencil twirling, and the fidgeting so very many Autistic hands have sought out. I think of all the ways the world has discouraged these needs. I think of quiet hands. I think of table ready. I think of all the ways we tell people the things their hands need do not matter, are not important, are not okay.

I think of my grandmother ripping the feathers from chicken flesh with fingers that once longed to dance across the keys of a typewriter. I think of how fortunate I am to never have had to choose. I think of how I live in a time and a place where I can be farmer or be a secretary or I can have a secretary. I can have a husband or I can have a wife. I can choose to wash the dishes of the people I love and I can choose pay someone else to vacuum the floors.

I think of how I live in a world where my needs are generally accepted and accommodated. I think of how my autistic son and my autistic friends deserve this too. I think how if we are willing to accept, to listen, to learn, then yes, there is room for us all to find our place eventually. I think of how Charlie will find his place eventually. I yearn for my grandmother’s faith that the Lord will see to that.

Red. Orange. Yellow. Green. Blue. Purple.

You’re right, Charlie, that does look better when it’s organized. Thanks for showing me.

Safe

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For months Charlie has been struggling.

Months.

There were issues that started in summer camp. Issues that brought about a return of Charlie’s flight and fight responses to anxiety. Issues that carried over into his after school program once school started. Issues that were spilling full force into his school day and our home life.

Months.

I have questioned. I have worried. I have agonized over what was the right way to help him.

For months.

Each day, each incident, always coming back to the same explanation from Charlie.

I’m afraid.

Afraid because it’s different. Afraid because it’s a change. Afraid because the rules are confusing. Just afraid.

A few weeks ago the boys and I took a trip to Boston for the weekend to meet up with their grandparents. Charlie was excited to go. I was not so excited. I pictured all of the difficulties we had been trying to manage at home lately played out in a big and unfamiliar city. The thought terrified me.

But, Charlie wanted to do it. And I promised myself long ago that I would not let my fears of the possibility of a meltdown rule our lives.

So, we went.

And it was amazing.

There were still moments.  Hard moments. But, unlike much of our lives lately, they were the exceptions, because as the weekend progressed I saw a peacefulness returning to Charlie that I had not seen in what felt like a very long time. I saw him managing situations with grace that I would have sworn to you he was no longer in a place to manage.

As I began to see Charlie feeling peaceful, I began relaxing again as well. I began trusting he could handle things again. I even went out with friends leaving the boys in the hotel for the evening with their grandparents. When I realized halfway through the evening that the battery on my phone was dead, instead of panicking and rushing back to the hotel, I chose to assume they were going to be fine and stay out. When I returned the boys were curled up together asleep, the world apparently not having collapsed in my absence.

I realize as I write that last bit, it is so much the stuff of everyday life it might sound ridiculous to remark on it. But, trust me it is not the stuff of our everyday life. Not even close. I don’t think I even have the words to tell you how incredible it felt to know Charlie was not in my presence and to not be terrified about whether or not he would be alright.

You’re happy here aren’t you, Charlie? I asked him one afternoon as we headed out on the train for some sightseeing. He was snuggled against his grandmother in the crook of her arm listing off the train stops between our hotel and our destination.

Yes. I’m not even scared at all.

You’ve been handling a lot of new places and people and crowds and noises really well, my love. I’m impressed. Do you know why you are feeling less scared here?

I’m not scared because I feel safe.

It was a moment in time that would not leave me. I would replay that conversation over and over in my mind. The answer I had been so desperately looking for becoming clearer with each replay.

It’s what we’ve always known about Charlie. It’s what I feel so incredibly blessed that his school really and truly gets about him.

It’s always been about relationships with Charlie. When he feels a bond of trust with someone he is able to manage the constant level of anxiety he lives with and roll with change and uncertainty. When he does not have that trust with someone, there is not an autism therapy in the world that will make things better. It’s that simple with him.

I realized when we returned from our trip that Charlie had been telling me my answer all along. He is afraid in after school care. He does not feel safe. That is all that really mattered. The fact that he had been able to manage it last year or that they were more than willing to accommodate him in anyway we could give them didn’t really matter.

In the end it just mattered that he needed to get back to a place where he felt safe. And I could give that to him.

So, a few weeks ago, I pulled him from his after school program. I am privileged to be able to work from home, which allows me to have the boys come here after school instead. Charlie has made a quick return to his former self.  The day in, day out issues that seemed to rule our lives for months are simply gone. Life is peaceful.

While there are some obvious reasons this isn’t ideal, as Charlie has gotten more peaceful, I too, once again feel peaceful in a way I have not in a very long time. So, while this won’t work forever, for right now it couldn’t be more perfect.

sitting out for a turn

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I’ve been struggling for several months now. We’ve been on a roller coaster of sorts around here. The highs have been breathtaking and the dips have been some of the steepest I have seen in a very long time. It’s left me, more often than not, without any idea how to describe life moment to moment. Most days, I can’t find an answer to someone asking me in passing how I am. I am neither good nor bad nor just fine. None of it feels particularly sincere because to claim any adjective as true feels like ignoring so much else.

I haven’t been able to find a consistent enough theme to put together a simple 500 word blog post. So, I have struggled to come here, this refuge I have held sacred for years (I can hardly believe it’s been years). When I have put the finishing touches on a happy post I’ve felt overcome with the dishonestly of what it is not saying. Likewise, when I write about the hard stuff I feel a betrayal of so much that is simply incredible in my life.

It’s a dissonance that so perfectly encapsulates the larger struggle I have felt. The ups, the downs, the no meeting in the middles.  It has been my task of the last few months to find ways to disentangle my emotional state from each and every up or down that happens with Charlie. I’ve got a lot of things I know to do to take care of myself at this stage in the game. I am doing those things. Mostly.

I wish I could tell you that those things are working. I can tell you they are helping. I can tell you I keep trying. Harnessing and controlling my emotions and not taking on the emotional state of those that I love as my own is a life long struggle for me. The Professor often reminds me of how much good comes from my being so tuned in emotionally to others. It’s the balance of staying tuned in for when it matters against being pulled under by every fluctuation that I am striving to find.

As I was driving on Friday evening to pick up the boys from their after school care program, I was taking note of just how giddy with anticipation I was to see them. There is an all too quick moment after I first spot them and before they notice me there. I get to just stand and admire them as they go about whatever project they are engaged in and it is delicious. That moment of reunion is always the sweetest part of my day. Friday pick up is always particularly wonderful. Without the grind of dinner, homework, and showers to rush through, I get to say yes far more than I say no for what can feel like the first time all week.

We will usually stop at a park on the way home because we can. The boys will run around and I will sit and watch and feel the stresses of the week draining from my body and relax into the feeling that we are all together again and we are okay.

I was thinking of this as I drove on Friday. The utter joy of these moments of anticipation. My mind turned to how often I rob myself of them. I thought of how often I spend this ten minute drive with my hands gripped tightly to the wheel, a pit in my stomach, in fear of what stories I may hear about what Charlie did when I get to the day care.

The reality is that sometimes Charlie has great days there and sometimes he has really rough days. Unless they have called me to come in early to get him, which happens at least once a week, there is really no way for me to predict what state I will find him in when I arrive. The ten minutes I spend in the car driving there are mine. What I do with those ten minutes are purely my choice. I can choose to spend them reveling in the delicious joy of getting to be reunited with my boys after a day apart or I can spend them in turmoil worrying what Charlie may have done.

Neither of those choices changes one bit of the situation I will find when I arrive. But, one choice is me deciding to stand on the platform and let the roller coaster head out without me for a turn.

The Next Right Thing

I’m composing myself as I leave the director’s office at Charlie’s after school care today. My head is in a daze. I’m trying to think of my tools. I’m pushing back the emotion, flipping through my mental lists of what needs to come next.

The other parents are just starting to show up now fresh from work. I just want to get out of there. I’m trying to remember I need to pick up some paperwork for Tommy in another part of the center before we go. I’m trying to remember something. There is something else. It feels like I’ve forgotten something else. What was it?

Suddenly I feel Charlie’s hand in mine. I’m struck by it, pulled momentarily from my haze. I hadn’t realized how cold my hands were until I felt the warmth of his lacing gently through my fingers. It had been cold in the house today. I couldn’t seem to get warm. I’d just put on a pot for tea when the director had called and said he needed me to come in and get Charlie right away. The tea. Was that it? Was that what I forgot? Did I remember to turn it off as I rushed out the door?

I turn to Charlie and give his hand a light squeeze.

I missed you today, my love. We have to go to the second floor and get some papers I need before we go, okay?

Okay, mommy. He replies gently, his hand still in mine and follows along quietly.

We wind our way through the halls and I wonder about the tea pot that may be burning on the stove at home. I hope the steam does not run dry before we can get home.  I try to settle myself into the notion that it may. I remind myself there is little I can do about it in this moment. I try to remember to breathe. I try to remember it may not even come to pass. Perhaps I turned it off after all. Perhaps all my worries are for nothing.

It’s just the escalation in the violence lately that has me concerned, the director had said to me in our talk moments before. All the while Charlie played calmly and happily in the office next door with a staff person. I could see in the director’s face how hard it was for him to be having this talk with me. I thought of all the talks like this I had had before. Too many, really. I thought of how much easier they were when the person on the other end of the table was unpleasant about it. It’s easier to leave feeling angry than like this. Like I’ve failed Charlie.

I search my brain for what to say. I want to offer something. I want to fix it all. I suggest a few thoughts about changes we could try to make. They are small. They could help. They likely won’t be enough.

I reiterate what I have been telling him for the past few months about why Charlie says he is having a much harder time here this year than last. I tell him how every time I ask, Charlie just keeps telling me he is afraid. He keeps telling me how they are in a different room this year than last. He keeps telling me the kids are different from last year. The teachers are different from last year. He tells me how afraid he is about this. He tells me how he is nervous and he misses when things get explained. How he doesn’t know what he is supposed to do and he thinks he gets in trouble for not knowing. How he tells me he is afraid of getting in trouble so then he gets really, really scared and how he somehow always makes it worse then.

I offer up some solutions around this. Again. But, my confidence is failing. I say it, I think, because I feel like I should have more to offer than I’m sorry.

The director begins to relay some of the recent incidents to me.  I tune it out. I’ve heard them all before. The specifics have changed over the years, but I know how the stories go. I know there is nothing I can do but say how sorry I am.

My mind wanders back to years gone by, when I worked as a child abuse/neglect investigator. I remember how sometimes I would walk into a situation so horrific I would feel an initial reaction akin to o my god, this is horrible. someone should really do something about this. This would be followed immediately by the panicked realization that I was that somebody and that I was the person who was here to do something about this.

I remember how I would then take a deep breath.  I would remind myself that I did not have to solve every problem before me in that moment. I just had to, moment by moment, keep looking for the next right decision that needed to be made.

I left the director’s office with a handshake, though I can’t honestly say I fully remember what we’d agreed to or if either of us really believed we could patch things together.

There are forks in the road where the choices feel overwhelming at times. I don’t fully know why this program that Charlie handled with ease last year seems out of reach for him now. I don’t know if the answer is that he just can’t be in an environment without substantial supports at this point and I should pull him out. I don’t know if we should continue to tinker with the supports he is being offered and hope his anxiety abates.  I don’t know if I should fill either of the two prescriptions for new medication his doctor advised we try on our last visit.

The decisions feel hard and heavy and so much bigger than me that I feel that I can’t possibly be the somebody who is supposed to do something about this.

It’s Charlie’s hand in mine that pulls me back. It’s the soft, steady warmth of it that centers me. It reminds me that I don’t need to have all the answers right now. I just need to make the next right decision.  In this moment I just need to love him. That is all.

I remind myself to breathe. I remind myself that all the big emotions that are about to wash over me are about me and not him. I remind myself that a child who lives with the constant crushing anxiety that he does deserves to have a steady hand to hold. He deserves a mom who is a safe harbor.

That is the next right thing.

Three years later

-

Jess at Diary of a Mom wrote a post this morning about coming to terms with a child’s diagnosis that got me thinking. I started to leave her a comment but as it got longer and longer, I realized it belonged here instead.

It’s been three years since Charlie was diagnosed. We waited a year to get in to see a developmental pediatrician. I thought I was more than ready to find out what was “wrong” with him. I wasn’t.

The night we found out, completely overwhelmed by my feelings, I did the only thing I’ve ever known how to do when the feelings are too big. I sat down and wrote and rewrote until the wee hours of the morning when I had pulled all the things rolling around in my head into a narrative that felt full and real to the moment. The following is what I wrote and posted that night to Facebook because I needed people to know, but I knew I couldn’t speak it yet. A year later, I would use it as the first entry on this blog.

On Saturday I took my 4 year old son, Charlie to a movie at the planetarium.  A special outing, just he and I.  As we sat in the lobby waiting for the movie to start, we looked at the pictures together of the stars.

“Mommy, Do you know how the stars were made?” he asks me.

“um. well. It’s kinda complicated,” I stammer.  At this point he launches into a detailed explanation of the big bang theory.  “like dynamite, Mommy, think of it like dynamite,” he finishes and looks at me with his beautiful blue full saucer eyes. I feel my heart swell with such love and pride for my sweet brilliant little son and can’t resist wrapping my arms around him and squeezing him tight.

“Does he have any strong interests, things he knows a lot about, things he obsesses about?” the doctor asks me today.

“Well he likes science a lot,” I say.  “But, not obsessively, he’s just interested in it, memorizes things.”  I tell her my Planetarium story to illustrate.  She smiles a knowing smile and scribbles furiously.  Suddenly, I want to grab her notes, rip them up.  Take my sweet memory back.  It’s not a symptom, I scream in my head.  He likes science, stars, dinosaurs, he is mechanically gifted, he is fascinated by types of good and bad bacteria.  These are not symptoms, they are gifts.  See him.  Why can’t you see him.

“His anxieties at preschool come from his inability to read social cues,” the Doctor tells us later in the appointment.  “He can’t understand what each different person expects from him and so he can’t figure out how to behave.”

“MOMMY,” Charlie screams as he comes running over to me on the playground one afternoon, “I made a friend!”  He is referring to an older boy I just witnessed give him a turn throwing a ball before going back to play with his friends.  He is beaming at me, again with the big saucer eyes, because he so desperately wants to interact with kids, but knows he often fails at it.

“Wonderful!” I cheer and smile the biggest smile I can muster to hide the aching in my chest. “I think that is wonderful, my love.”

It is painful and I am angry that so often no one seems to see the beauty of this boy that I see.  But, I don’t grab the doctor’s notes or storm out of the office because she is right.  I know she is right.

And I remember, the last time I sat in this hospital with my precious then 18 month old son and heard grim news.  Flesh eating bacteria in his neck.  80% mortality rate.  Don’t get your hopes up. We don’t know if he’ll make it.  In the quiet of the night, I held Charlie’s lifeless hand, while the ventilator pressed his chest up and down.  And I, the ever doubtful general non-believer, dropped to my knees and pleaded.  God please don’t take my child.  PLEASE. Please don’t take him.  I can accept anything that follows this.  ANYTHING.  I will deal with it, just please please please don’t take him from me.

and my sweet boy fought, survived the unsurvivable.

So, here is the ANYTHING I prayed for.  Aspergers. o.k. We will deal with it.

He is still here and I know he will fight.

I had so much anger that day towards the developmental pediatrician and what I perceived to be the smug smile on her face as she noted things about him that seemed to support the diagnosis. I explained to her in great detail how I had looked into aspergers on my own as a possible diagnosis and all the reasons I had decided it was not true. She listened stoically and then reiterated that my son had aspergers.

She also told us about her husband who had aspergers and how the diagnosis just meant Charlie’s life would look a little different than we expected, and maybe even harder than for most, but that college, a meaningful job, a family, all of it was still possible for him.

Compared to many diagnosis stories I have heard our doctor could not have been more gentle and giving with us. But, at the time, all I could feel was her reducing my son to a pile of symptoms and believing she had any clue about who he was or would be because of it.

But, here is why I need to write this morning. Two days ago we returned to that same developmental pediatrician for an annual check in. Three years later I see that smile of hers, the one that once felt so damned smug, for what it truly is. I see it because I have seen it on the face of so many people who have come into our lives since. I see it because it’s the same one I have now.

This week, I saw she had that smile when Charlie put his eyes a few centimeters from his iPad and then started moving it around saying he was watching the little squares. Visual stim she had said to none of us in particular as she beamed at him.

I saw she had that smile when Charlie dumped out her toy chest and then proceeded to reorganize it more neatly by subject and color. She reached out and gave him a big hug and said, I just love you, Charlie, you are really something special.

Three years later, I recognize that smile for what it always was, the sheer delight of watching someone being their purely, authentically, joyful autistic self.

Three years later, the fear I felt on that day of diagnosis about how my son would find his way is still with me at times. It comes and it goes, but it no longer rules our lives.

Three years later, there are still challenges. But, they have changed over time and now they sit on a base of accomplishment and they ride side by side with unending hope and promise.

Three years later and I understand there was never anything for my son to fight.

Three years later and I smile at all the things our doctor smiled at on that day. All the perfectly common and beautifully unique things that make up my son’s autistic self.

Three years later and I smile because I too now see the joy of autism.

Different

-

Last Week

“This. This is the one.” Tommy tells me, running his finger slowly over the seem of a translucent purple glass bottle he has pulled off the shelf at the craft store. His grandmother had given him some money to spend as a reward for a great start to the school year. There was never any question where he would go to spend it. The craft store.

“Mom, we can put some of the purple cone flowers we still have growing in this one. And then some of the purple bell flowers from the Hostas. Do you think that would be pretty, Mom?”

I was the girl who eventually gave up on understanding what colors matched and just memorized the combinations I saw others wearing. I’m all about solids and neutrals. So, it continues to baffle me how I could have given birth to a child whose world revolves so fully around the aesthetics of design.  But, these are the moments when I just sit back and enjoy getting to watch Tommy being Tommy.

He puts the bottle in our basket with the assorted candles and other pretty glass decorations he has decided to purchase.

“Oooohhhh, Mom!” His face lights up with an idea. “Mommy, we have that blue ribbon with the polka dots at home. If we tied that around the bottle it would really look nice with the bell flowers. Do you thinks so, Mommy? Or we could put a white taper candle in the bottle! Would that look nice on the table for dinner?”

Over and over, I will nod and beam the biggest smile I’ve got cause I haven’t got a clue how it will look, but god do I love just getting to breath in the creative energy that oozes from this kid.

All the way home from the craft store he is bubbling with ideas of how he will decorate the house with his new purchases. We pull into the driveway and Charlie is out front playing with the neighbor boy. They rush over to greet us.

“NO!!! MOM, NO!!!!” Tommy screams at me as I grab the bag of crafts from the front seat. “Leave it here, mom!”

I see the look of desperation on his face in the rear view mirror. It’s a familiar one. He doesn’t want the neighbor boy to see his glass decorations and candles. At seven he has drawn a line around what he thinks boys are allowed to enjoy. Many of the things he loves don’t fit into that category.

I hate it. But, I follow his lead. We do what we can to make our home the place where he can feel safest to be fully himself. I have to believe if he can build his confidence here he will start to feel safer bringing his whole self to the rest of the world eventually.

At least I have to hope because his whole self is really something special.

*

Three years ago.

Tommy and I are walking Charlie to his class at the integrated preschool he attends. We see his OT walking down the hall first as we do every morning. Charlie runs over to her, holding out his hands proudly for her to see the blue, purple, and green sparkle polish covering his finger nails.

“THAT IS AWESOME, DUDE!” She tells him with a high five. Charlie beams at the praise. Tommy buries his similarly painted nails into his shirt and hides his face from her as she passes us. We leave Charlie in his class showing all his admiring classmates and staff his crazy colored finger nails and head to drop Tommy at his preschool.

The boys had always watched me painting my toenails with great excitement. I let them pick out some crazy paint colors of their own one day at Target. We had been making wacky creations on their toes ever since. But, it had finally occurred to them that, even though I didn’t paint my finger nails, they could paint theirs.

So, we did. Because they were four. And it was cute. And really who in their right mind would tell a little kid that there were rules for creative expression based on gender. Or so, I thought.

Tommy started balking as we walked into his school. He started asking me to take him home and take the polish off. I should have done it then. I wish I had respected my son’s wishes. But, this was new to me and I thought telling him to feel proud of himself was the right thing to do.

I pulled the teacher aside. I informed her he had really wanted to wear the polish but suddenly he was feeling nervous that kids would make fun of him. I told her how I had assured him that would not be the case. I told her about all the excitement Charlie had gotten for his nails.

She scrunched up her face at me and told me the kids might make fun of him and was I sure it was such a good idea for my son to go around wearing nail polish.

“He’s four. It’s just nail polish. Are you kidding me?!?!?” I was incredulous, but saw I was getting nowhere. I went to Tommy, took him home, and took the polish off his nails. I told him I was sorry I hadn’t listened to what he wanted.

So, now I follow his lead. He gets to decide his public and private behaviors. Just like the rest of us do.

But, our home will always value acceptance.

*

Today.

I wake from a nap on the couch to the sounds of bird calls.  I look around in a sleepy confusion to see Charlie and The Professor hovered over the iPad. They are playing bird calls and imitating them.

“Oooooh, ooooooh, I have one,” I tell them in my still half asleep stupor. “Do that one bird from Botswana!”

“I wasn’t in Botswana with you.” The Professor reminds me patiently.

“Well, yeah, I know that. But, I told you about it. You know the one that sounds like it’s saying something but then I thought it sounded like it was saying something other than what it’s famous for sounding like it is saying? I think it was supposed to sound like it was saying a name or maybe it was a phrase or something.”

The sound of a Cormorant call plays as they try to ignore me babbling on.

“Oh, I remember now! It was the Lilac Breasted Roller!” I say triumphantly.

“No, it wasn’t,” The Professor says between bird calls. “The Lilac Breasted Roller is the national bird of Botswana. That’s why you are thinking of it, but it doesn’t have a distinctive call. It’s known for it’s coloring.”

“Seriously?!?!?! You happen to know the national bird of Botswana? But, you can’t remember that I told you about a bird that sounded like it was saying something, but I thought it was saying something different?”

Charlie and The Professor exchange a look that in non verbal vocabulary loosely translates to It must be really sad to not remember everything you have ever learned EVER in your entire life.

I sat sulking on the couch because yes, it is rather sad sometimes really. I imagine I must have learned some really interesting things over the years. Like the name of that damn bird.

“Okay, Charlie. I think maybe doing bird calls should just be something we do here at home. Okay? I don’t know if the other kids would really like it as much as we do. Okay, Charlie?”

I shoot the Professor a dirty look because I am still sulking and feeling a bit feisty at this point. A look I hope she can translate to say How dare you tell him not to do something around the other kids.

“Charlie, you do what you want.” I tell him.  “But, mama is right that some of the kids might think it is a strange thing to do. But, you do what you want. Okay?”

“I know, Mommy. I will.”

*

I don’t know all the answers when it comes to teaching either of my children how to embrace and accept all the unique and amazing things about themselves that fall outside of what the world expects a seven year old boy to be like. I’d like to follow my gut, which says to tell them to be proud and open with all of themselves. I want to tell them of the shame that living a double life breeds.

But, the truth is there are still times when I take advantage of the fact that I know people will not assume I am gay when they look at me. I certainly correct people’s assumptions most of the time. But, there are times when passing just allows me to more safely maneuver a world that doesn’t always care how much I believe in embracing who I am. I also know this is not an option for many, many LGBT people.

Tommy has learned this trade off. I hate watching it. I’m never sure if I am supporting him in the right way. But, I know he sees the rules much of society functions by. I know when he shares his passions with people it is based on understanding when he might be stepping outside of societal expectations for his behavior. I feel there is power in him making that choice for himself.

One of the things I have loved so much about Charlie is how he is really authentically just who he is at all times. As someone who has struggled to feel comfortable in my own skin for one reason or another all my life, I can’t help but feel inspired when I watch him move so happily through life asserting his right to be himself without a second thought. This is a gift. There is so much for all of us to learn from him.

He is who he is. You are who you are. Why would anyone be any different than who they are? It’s really that simple for him. I want that.

But, I get The Professor’s hesitation. She is also a person who doesn’t always see the rules of expected behavior until she has crossed over them. It’s a very different game to play when you don’t know the rules. She wants to teach Charlie the rules.

We both do.

But, Charlie has something really special in his lack of guile. I have seen how infectious it is for people to be around. We should be moving towards being more like him not trying to take it away.

I wish writing this post had clarified the answers for me. Sometimes I get to the end of writing and I find what I was looking for, but not tonight. Tonight I am left where I started.  We are making our home a place where acceptance and celebration of who you are is a must. We are letting our boys take the lead in who they want to be in the world.

After that, we’re just here feeling our way through the best we can.