With Friends Like These

On July 24, 2017April 29, 2019 By skrosenfeldLeave a comment

Dear Danny,

When I was your age we went to the beach every summer. We went as a giant crew: your Great Grandparents, your Granddad’s brothers and sister and a whole bunch of cousins. We would stay at a house on the beach and spend our days in the ocean and our nights listening to your Great Granddaddy Jack sing songs on the deck under the stars.

I would skip in and out of the tide pools, looking for shells and snails. I would sit and build castles and play with my cousins and will the sun to stay up all day. I was little and the beach was a magical place to me.

Yep, that’s me.

5 years ago, the summer before you turned 3, we took you to the beach the only way we could manage it: we saved up and reserved a beachfront hotel room for 3 nights. We knew it wouldn’t be the same, but we were hoping to give you a piece of the magic that I had saved up in my memories.

From this picture you might almost think it was a pleasant experience.

It was not.

It is something that your Father and I refer to, even now, as one of our biggest missteps in parenting. You didn’t want any part of the trip; not the hotel, not the car ride or the room service food. You screamed when your toes touched the sand, screamed at the ocean waves, screamed at the other guests in the hotel on the elevator. We took you to an aquarium and paid the exorbitant entrance fee, only to walk right back to the car in less than 15 minutes. We considered coming home from the trip early but, since the nights were not refundable, we stuck out every last disappointing day.

I don’t know how you remember it, Danny, but for a long time that trip was a very difficult memory for me. I remember standing on the deck of our expensive hotel room before we checked out to head home and saying goodbye. To the beach. To my expectations.

I was a Mom and the beach was a painful place for us.

It was your Grandma, 2 years later, that convinced us to give it a go again.

It was much, much better without a doubt. For the next 3 years we would travel to the Delaware beaches with your Dad’s family; we grew from a family of 3 to a family of 4. We were able to enjoy ourselves more but we never braved an entire week and we never planned to do much beyond playing in the littlest waves and hanging out at the house. Your interest in the beach had a predictable decay; after the first day we had to work hard to keep you on the beach more than about 20 minutes. On the last day you were happy to load up the car and come back home.

You were a creature of routine and familiarity, and the beach was a complicated place for us.

This year, though. This year.

We almost didn’t go. Being an adult comes with a lot of boring circumstances and predicaments and this year had its fair share. We were ready to scrap the idea entirely but the beach is part of your summer routine now – you started asking about the “beach house” on January 1^st, as soon as the ball dropped. We were out of ideas for how to make it happen when our dear family friends offered the opportunity to travel together. And though I needed to believe it could work, I was so nervous that it would be a total disaster that I wanted to say no.

Oh, but thank God I didn’t.

It got off to a somewhat interesting start, but you impressed me immediately with your ability to cope with a pretty intense series of turnarounds and changes. We met up with our friends and you immediately threw yourself into the mix, running and playing and causing chaos. From the first moment, everything was different.

When we got to the beach, you headed straight into the water with your friends. Just days into the trip you were building sandcastles and jumping into the cresting water like a pro.

Like someone who had been loving the wind and the waves their entire life.

Like someone who would never catch the eye of a passing stranger; like someone who cast Autism and all of its burdens out into the sea and watched it sink into the horizon.

Of course, as impressive as it ultimately was, it wasn’t worries about your behavior on the beach that made me want to bail on the trip at first. It was the idea of living for a full 7 days with another family, even another family that we loved. You are used to being able to run the show around here; that is not a particularly compatible situation to take into a house with 8 other people.

Every day brought a new opportunity for the disaster that never came. There were bad moments of course, for everyone, but there was always recovery. There was always grace and forgiveness and treats and snacks in the kitchen. There was understanding, compassion and friendship.

This is where I struggle for the words.

As of the writing of this letter, we have been home from the beach for nearly a month. I just haven’t been able to put my thoughts about the significance of this trip into words. Even as people have asked us about this vacation, I have struggled to find a way to convey how just a week in that place somehow changed our entire perspective as a family.

I’ve always considered myself to be a powerful advocate for you, Danny. I’ve made no secret of my willingness and desire to fight with you and for you; to leave no stone unturned when it comes to what you need to succeed and be happy. But…this trip forced me to realize that I am not always the believer that I claim to be.

Because when the offer was on the table and the beach trip was suddenly possible again, my first thought was “no”. I didn’t want our friends to see what our world really looked like. What our mornings and mid afternoons and evenings and bedtimes could really be.

For all of my words about putting you on a pedestal and wanting to give you the world…I spend a lot of time trying to hide you. For my own pride, and for yours, I will still choose to sit out a lot of the time. And that is humbling to realize. It is, in many ways, the ugliest thing about Autism: the path of least resistance will almost always sell you short. And we will choose it more than we should.

This trip forced me to allow you to be received into the arms of another family – friends of ours for nearly 2 decades. Friends who have been a part of your life since the day you were born but that I have kept at arms length for almost as long, afraid that the effort that it took to manage your behavior made me a worthless relationship for anyone to maintain.

These friends accepted every part of you; loved and respected you in the highs and the lows. Their children folded you easily into their pack, and being with them made you happier than I ever dared to hope you could be all those years ago when you screamed at the ocean from the balcony of an expensive hotel room.

And, once again, I was taught the lesson that has been in front of me everyday since our journey began: your life changes when mybehavior changes. Not the other way around.

It has taken us 5 years, but with the Grace of God and the love of friends, we have found our way back.

I am your Mom, and the beach is a magical place for us.

For me.

All over again.

Your Best Year

On June 10, 2017April 29, 2019 By skrosenfeldLeave a comment

Dear Danny,

There is boy at my school that reminds me a lot of you.

At least, he did last year when I was in the position to observe him more frequently. He wasn’t one of the students in my class; he was in the general education class and I would see him almost every day when I went to specials with our students.

I’m not sure why he brought you to my mind the way that he did; he was certainly different in more ways that not. Still, there was something so familiar about the way he worked to hold it together in a world that was simply more treacherous for him. In a world where teachers carry clipboards and radios everywhere they go.

Some of his days were better than others.

One day on my way to lunch about 2 months into my teaching job I saw him in the hallway outside of the cafeteria having a truly epic meltdown. He was sobbing and screaming; sending out into the world an assault that was both physical and verbal, firing off in all directions like a loose cannon.

I desperately wanted to help, but even then I knew what I didn’t know about situations like this. I walked past quickly trying not to add to the chaos, knowing that a meltdown outside of a busy café is already bad enough.

But as I passed them I was able to see and hear something that hadn’t been obvious from down the hall; his teacher, huddled down on the floor next to him. Her words firmly but calmly giving him the steps he needed to take to recover, over and over again. Her body absorbing the energy of his panic and the gravity of his fall. Her own lunch and planning time, slipping through the hour glass unnoticed as she dug deeper into her arsenal looking for a strategy that would work.

I left school late that afternoon. On my way out I saw his teachers sitting on the couches in the office with their heads in their hands – well outside of contract hours – still searching for the answer.

And I cried on the way to my car.

Not because you have had days like that, Danny, but because you have had teachers like that.

*****

Today was the last day of your second grade year. It truly doesn’t seem possible: somehow, even with all of the bumps and turns along the way, here you are. Right on time. Right at the end of what was maybe your best year ever.

A year filled with academic and social gains that I would not have thought possible as little as 6 months ago.

A year where one of your biggest behavior challenges was talking too much.

A year where you came home with poetry about math, saying that it made you feel proud.

Today was also your last day with this awesome teacher.

And we are a little nervous about it.

More importantly, you seem to be a little nervous about it. So I think we should talk.

At this point in your education, Danny, you are receiving about 95% of your lessons in the classroom with your peers. You do have a lot of help, though, and that help is what brought Mrs. R to your team. For 2 years she has been a part of your class and she deserves no small part of the credit for the miraculous progress that you have made in that time. She guided you with both compassion and expectation; she held you accountable to what she knew you were capable of and nothing less. She cheered you on in your greatest achievements and showed you grace and kindness in your most blistering falls.

She stood in the gap for us as parents and went out of her way to be sure that I always felt like a part of your life at school. She advocated for you in the moments when I couldn’t.

Amazing photo, courtesy of Mrs. R

And somehow you will move on to 3^rd grade – the grade where “learning to read” becomes “reading to learn” and parents flood social media with questions like “How much homework does YOUR kid have?” – without her.

Mrs. R is almost irreplaceable.

Almost.

The thing is, dude, you have never had a bad teacher. Not once. And trust me buddy: for being 7 years old you have had A LOT of teachers.

You’ve had teachers in their first year of teaching, and experienced veterans. You’ve had men and women and many different nationalities and not a one of them has left you unchanged. Even in the last two years, as you connected to Mrs. R and grew under her mentorship, you have had 2 other teachers and a team of aides that have become like family to you. This year you defined yourself by whose class you were in and cared so deeply for your teacher’s opinion of you that even on the weekends when things went wrong you would say: “Mommy, please don’t tell Miss S.”

(And oh, Miss S. Gosh, we are going to miss her too. The 2nd grade teacher I wrote to at the beginning of the year when I only knew her name. Who was everything I prayed for. Who went so far above and beyond when it came to you that she would have needed a telescope to see where her efforts could have ended.)

It is an unfortunate side effect of your emotional growth that you are now aware of “good-byes” as they happen. There was time not that long ago that people could come and go from your life and you would just barely take note: the loss would be unexpected and give you a bit of an emotional limp for a time, but you couldn’t anticipate the feeling.

Now, with your words and your heart more in sync than ever, you know when you are about to “really miss someone”. And while it will always break my heart to know that you are sad, I will never take for granted the opportunity it gives me to see how you love.

In the last week of school, Mrs. R gave you a book. A beautiful book, full of words you can read and concepts you understand. But she also wrote you a letter.

And while what she wrote to you is beautiful, it isn’t what she wrote that stands out to me. It is that she listened well enough to our story to know that I keep this journal of letters to you and wanted to join the conversation, whenever you are ready to have it.

So believe me kiddo. Mommy is going to “really miss her” too.

*****

That boy I told you about at my school? The first interaction I had with him this year was better than the best conversations we’d had the prior year. He told me he really liked his teacher and that they were doing cool things in class. From what I can tell, he had a great year.

And of course he did: he has a great team behind him.

And Danny, so do you.

We are going to have a great summer kiddo. And then we are going to kick 3^rd grade’s butt.

From This Valley

On April 3, 2017April 29, 2019 By skrosenfeldLeave a comment

Dear Danny,

Today is World Autism Awareness Day, yet again.

The first time I wrote to you about Autism was this day in 2013, and while that seems like it has to have been a lifetime ago, the math doesn’t lie: 4 years. An eternity and yet an instant; minutes and days gone in the blink of an eye.

4 years ago I knew what to say on this day. I was new to the conversation, and I felt a sense of community in the puzzle pieces and blue lights. As the years went on and I found other resources and more authentic voices to rally behind, I tried to adjust my words and my actions based on what I had learned. I follow blogs and websites and journals; I am invested deeply in the lives of children I will never meet. I gain perspective and hope as I read the writings of autistic adults; some who have made a way in the neurotypical world, and others who have not. Or will not. Or can not.

And if there is any one thing – one common thread that seems to run through all of these writings it is this: I am doing it all wrong. One day you will grow up and be angry with me for the way that I have documented your life. I don’t understand, and can never understand, anything about what it is like to be you.

So, you know, #parenting? Or something like that. I’m pretty sure that much is true for all of us.

When I started writing my thoughts down for the invisible audience on the other side of the screen, my only intention was to help the world see you the way that I see you. I wanted to make it clear that we were absolutely in love with our little boy – that the challenges we were facing and the joys that we were experiencing were one in the same. Not one without the other.

But soon into the endeavor I started to see this as something more. Because I know – I know – we are doing many things wrong. I know that there are gaps in your understanding of the changes that you have faced. You know whatwe’ve done, of course. But when you need to know why…maybe you can start here.

I could no more tell you what it is like to be autistic than I could tell a bird what it is like to fly. Your story is yours alone to tell. But for now, these are my words. And I am not speaking for you, Danny. I am speaking to you.

So today, on our 4th time experiencing World Autism Day together, I want to tell you the single greatest thing I’ve learned in the years that we’ve been on this journey. It isn’t any single thing that we are or are not doing or any one decision that we’ve made.

It is the shape of the path, and how to pace myself to walk it with you.

4 years ago when your Dad and I first stood in the valley and looked up at the mountain of uncertainty that had formed in front of us, we could only see the rocks right before our eyes. On that first climb we were lucky if we ever saw further ahead than the next step.

You qualified for services.

Step.

We met the teachers and the specialists.

Step.

We had the meetings and the observations and the interventions.

Step.

We found the first thing that worked. Really, truly worked.

Step.

And before we knew it we were standing at the top. And it was so beautiful and clear. We let out the breath we had been holding since the foot of the mountain and lifted our eyes to look around for the first time.

That is when we realized what should have been obvious…there is more than one mountain.

And we would need to climb them all.

Now, 4 years later, it is easy to love the ascent. There are difficult moments in these times, but they pale in comparison to what we gain. Milestones are met, goals are set and achieved; relationships and friendships are formed. We’ve learned not to care how long it takes us to get to the top as long as we are still moving.

But at the peak…we want to stop time altogether.

It is the easiest to love the peaks. Those all too brief times when everything falls into order. When we look at each other and exhale, realizing that even now we still hold our breath the entire way up. We see the other mountains in the distance and we know they are spectacular but we just want this space to last forever.

So when the first rocks start to fall, we speak quietly…trying not to set off the avalanche we know is coming. We whisper excuses and pretend not to see the ground shifting beneath our feet.

It is the hardest to love the fall.

The fall makes us question everything; makes us wonder if we have ever done anything right or if we will ever make it up the mountain again. While I will never know exactly how it feels for you in these periods, I know that for me it is suffocating. It is isolating. It is being blanketed in doubt and turned around so many directions that I am not even sure which way is up. It is weeks where the days are long but the pace is frantic. It is uncertainty – expecting the phone call, waiting for the other shoe to drop.

This is the secret though, Danny. This is the simple truth that gets me through the fall:

We are always moving forward.

We start at the foot of the mountain and we load up all the equipment that we’ve accumulated over the years and we set out for new and great heights. And when we get there, it is so easy to want to stay. But when you have reached the top of the mountain the only way to stay there is to stand still. Even on the way down, even as the avalanche sweeps us up in its power and we feel helpless and hopeless, we still end up further down the path than we’ve ever been. And when the other shoe finally does drop, you might just find that you have both feet on solid rock again.

Powerful things happen in the valley. My decision to change careers came during a complete free fall. Our decision to seek help for you, the help that became the foundation of every mountain since, came from the lowest point of them all.

It is hardest to love the fall, but it is the most important part.

In recent days, we have been in a bit of a slide, culminating in you bringing home the worst daily report of your 2^ndgrade year. When I received the details via an email from your teacher, I was disappointed but not surprised.

I came home and asked you about it, expecting that you would “shush” me, or otherwise let me know we were not going to discuss it.

I could tell that is what you wanted to do.

But instead you told me the story. You told me what you did, and what some other kids had done. It was immediately obvious to me that you had lost it in class because you felt unfairly punished for something that you felt everyone was doing, but when I asked you why you didn’t tell your teachers everything that you had told me, you didn’t have an answer.

The next day at a birthday party two of your friends got into an argument. Quickly and without hesitation you flew through the door to call for help.

As we talked later about what had happened at the party, I told you how proud I was that you asked for help. I reminded you that you can always use your words to advocate for yourself.

Calmly and confidently, in the way that you that you sometimes talk to me with striking clarity, you told me that you only “tattled” at the party because you thought someone might get hurt. No one was getting hurt at school.

I flashed back to the guidance lesson you brought home several weeks ago about tattling. A lesson that I am certain the counselor thought was way beyond that red head shifting in his seat, ignoring the directions and coloring the cheerful “No Tattle Tongue” worksheet into rainbows. A lesson I have to admit that I would not have attempted with you myself.

And just like that, from this valley, we start to climb.

We’ve seen the heights and the depths of what this life can throw at us, and we are just getting started. But knowing the shape of the journey has allowed me to see, over and over again, that every peak has been worth leaving; to remember that no valley has ever been permanent and that every climb has been worth the fall.

And one day we will have climbed enough mountains to be able to write this story together, kiddo.

Just you wait.

The Next First

On August 23, 2016April 29, 2019 By skrosenfeld1 Comment

Dear second grade teacher,

Today I learned that the mail is not delivered to our end of the development until almost 4:00 (a time that I would almost consider evening, and not afternoon). I learned this today because I joined with the other parents in Loudoun County in anxiously awaiting the arrival of a letter from school; a letter that promised all kinds of important information about the first days of the new year.

And so it was today, at almost 4:00 in the late afternoon, that I saw your name for the first time at the top of a generic form letter. A generic letter in an envelope with 3 pieces of paper – none of them truly specific to my child. Just another PID invited to the school’s open house. Just another kid with a bag full of composition books and Kleenex, making his way to a second grade classroom.

And something about the sight of that thin envelope against the backdrop of IEPs, FBAs, BIPs and all of the other acronyms that accompany my child into this adventure, made my heart sing and ache in the same beat.

So…hi!

I’ll give you a minute to catch your breath; I know you are busy and everyone wants your attention. You won’t see us grappling for face time with you this week – we’ve got a whole year before us, and this isn’t my first rodeo.

I know; he’s a lot (and he comes by that honestly, you’ll find).

I know; you don’t even know what questions to ask yet (you probably like to get to know the students before you go through all the paperwork).

I know; you think you’ve got it all squared away (and I like that about you!).

I know; you’ve taught lots of kids like Danny over the years…

(But you haven’t. You really haven’t.)

I know you’ll know how to reach me when the parentheses catch up with you and the strategies stop working and you are left with this spicy, brilliant boy, who will be rewriting the rules faster than you can learn them.

I wonder how much you may already know about Danny. This will be his 3^rd year at this school and he doesn’t fade into the background easily. I wonder if you are excited to have him in your class or if you are a little panicked about it. I certainly wouldn’t blame you if you were…I panic sometimes when I take him to Target and all I’m trying to do is get out of there without him touching the bikes. He is a handful no doubt about it and, even better, he is a handful that I am pressing right into your palms by requesting that he attend your school even though we don’t live in the neighborhood. In these first days he will make your job harder. He will make your days longer. He will make your lessons less effective. He will bring out the worst in his classmates. You will question at least once a day if he is really in the right class.

His Dad and I…we know this. We’ve been down this road before. I’d shove a flask for you in his brand new Mario backpack between the boxes of sharpened pencils if I didn’t think we’d get arrested.

This will be Danny’s 8^th First Day Of School (I count the summers, because he does) since he qualified for the county’s preschool when he was 3 years old. For SpED parents, these First Days pale in comparison to the weight of eligibility determinations and IEP meetings. We know better than to hang our hopes on an amazing First Day, or to believe that those 6 hours matter much at all in the long run.

We know that we don’t always make great first impressions. We know that we have to give it time. We know that this partnership is unlikely to hit it its stride in the first sprint.

As we prepare for this next first, I want you to know that I get it and I am in your corner. I will read your emails, I will fill out the forms, I will come to the conferences and I will answer the questions. I will trust you. If you tell me about it, I will talk about what happens in the classroom at home so that Danny will know his Dad and I are serious about his relationship with school and with you. When you are frustrated, we will listen. When he is lost, we will help you find him.

I also want you to know that, though I only know your name, I am grateful for you. I am grateful for the calling on your life and how it has caused our paths to cross in this moment.

Thank you for reading all those packets of paper that are always inconveniently stapled and double sided. Thank you for writing sub plans for all of the meetings we are going to need you to attend; for writing emails in all caps when he blows us away and for speaking gently when the words are hard to hear. Thank you for the breaths you will take to keep your cool when Danny’s calm explodes in tears and stims over something you can’t understand.

Thank you for listening to the journey. Thank you for celebrating with us when he says something wonderful because you remember how I told you about those years with no words. Thank you for acknowledging our history; for seeing that we what we have given Autism over the years is directly proportional to what we have been unwilling to let it take.

Thank you for understanding that I am not sorry – not the least bit sorry – for what Danny is going to bring into your class and into your life. Thank you for making a place for him in your class and for helping us make the most of this thin moment in the wide, general education, world.

He will make your job harder, but brighter. He will make your days longer, but richer. He will bring out the worst in his classmates, and then you see them find compassion and friendship where they had first found only frustration.

He is one of a kind.

He is our world.

And he is so excited to meet you.