An Autism Parent's Worst Nightmare

B - at Legoland on the day we lost him

Oh Maddox. Sweet, innocent, beautiful Maddox. I feel like your little face is burned into my retinas. I can't stop thinking about you and the tragedy that just unfolded. What it must have been like to be alone, hungry and scared for days, having no idea or understanding of the hundreds, thousands of people who were looking for you, praying for you and hoping against hope that you'd be found safely.

And your parents. Your poor, poor parents. My heart breaks for them. Of course, I relate to your mom who just wanted to hold her baby again. How unbearable her pain must be. She will never be the same.

But I want to focus on your dad in this story. I've seen him vilified and condemned for his actions. By clueless, judgmental people who have no idea what it is like to live in his world or walk a day in his shoes. And this both stings and infuriates me. IF something comes out and there was any foul play, I will be the first one to say there is a special place in HELL reserved for him. But for now, what I see is a broken man whose life will never, ever be the same. A man who is a victim of a horrible, unforeseeable tragic ACCIDENT.  A man who blames himself and who has been blamed and attacked in social media. Someone who will forever live with the guilt and torture of being unable to keep his little boy safe.

And I see myself. This could so easily have been me. It has been me. We have experienced firsthand what it feels like to lose track of a child and to wonder if he will ever be found.

When B was 2, we took him on a family trip to California. We went to Legoland with 4 kids and 6 adults. My husband and I were alone with him at a small, enclosed play area. TWO adults watching ONE child. To this day, I have no idea how it could have happened but in a matter of seconds, he vanished. Gone. It is the most terrifying thing we have ever experienced. Strangers saw the look on my face, the panic and terror, and began searching with us. Someone notified the staff and they were on it too. At the time, not only was he nonverbal (which is still true today), but he also would not even answer to his name. And we were in a huge, crowded amusement park. It felt very possible that we might never see him again. I would not wish this feeling on anyone. No parent should ever have to experience this level of fear and anxiety.

Our story had a happy ending. I think it was less than 10 minutes that he was gone. I'm actually not sure how long it was because it felt like a lifetime. But along came little B., being led by a stranger toward us. He was crying - not out of fear but confusion. He had wandered off to a toy store and was looking around. Oblivious to anything other than the desire to see what was inside.

And that's the thing about Autism. He never once considered that he shouldn't have wandered off alone or that we might be worried about him. He acted on impulse. With no regard for safety.

This was the scariest time we've ever lost him and the time it felt most likely that we might not find him. I remember going to dinner with my husband that night and we were so shaken that we could barely speak. We talked about what would have happened if we hadn't found him and how we didn't know how we would have ever moved on. We were lucky. We came so close to the worst pain a parent could ever imagine.

This was the scariest time. The closest call perhaps. But it was not the only time. Not even close. Recently, he went outside and was ultimately found innocently playing on a trampoline in our neighbors backyard. Meanwhile, I frantically ran down the street and evoked a small neighborhood search. My heart has stopped many times until we've been able to locate a curious kid who is known to elope or wander. It has happened at home and it has happened at school. And we are not negligent or carefree when it comes to keeping him safe.

This is the reality of the world of Autism. The terrifying reality. These kids act on impulse. They don't understand danger. Most of them would be unable to tell a stranger their name or how to contact their parents. It happens in an instant and it has nothing to do with negligence or bad parenting.

It's a delicate balance to know this reality and not live life in fear.  We are as proactive as we can be. But there's no easy solution. B has taken swimming for years but I don't feel remotely confident that he would be safe in or near water. We have a gps tracker but we have to systematically teach him to wear it and that's not yet a reality. We have an alarm and door chimes in our home and he still gets away from us. We are fortunate in that we have had years of amazing therapy and resources but he is still, at the end of the day, the same vulnerable child he was at age 2. And we still live in fear of losing him.

So to anyone out there who is blaming Maddox's dad and questioning his every move, wondering how a child could outrun him and assuming there is more to the story, I hope this gives you pause. This could happen to any one of us who parents a vulnerable child. It is a haunting, terrifying reality. Until you have walked in our shoes, let's reserve the judgement and focus on the tragic reality of this situation. Grieve for sweet Maddox who never had a chance in this life. And for his parents who will forever be tormented and live with the pain of losing a child and not being able to prevent this outcome. And all the caregivers who would do anything, everything to protect their precious babies. If you still can't comprehend how this could happen, don't judge. Be grateful. I would give anything for this to be an unfathomable story.

Back to the beginning - our confusing path to an autism diagnosis

I read a lot about Autism. An awful lot. I have read countless stories from parents about their kids on the spectrum and what led them to an Autism diagnosis. How they always knew or suspected that something just wasn't right. A nagging feeling. An explanation for why their kid seemed so different from all of the others. Why they never slept. Never ate. Never seemed content. How they were on a quest to find answers and that they weren't really surprised when the answer came.

Our story is a little bit different. One that I haven't really come across much even though I know I'm not the only one. See, no one (including me first and foremost) thought B had Autism. No one. Not family. Not friends. Not even his own pediatrician who had cared for him since birth. Someone who referred kids for evaluations all the time and knew firsthand what Autism looked like at all different ages. Her exact words were "I'm not worried about Autism with this one". She even went so far as to send us to an ENT, who then immediately diagnosed fluid in his ears and scheduled surgery. They believed maybe his hearing was causing his one and only delay. Still at this point, I had absolutely NO clue. None whatsoever.

His Autism just didn't present itself in a typical way.  There weren't any glaring signs. Easy, no- complication pregnancy and easy, quick delivery. Heck, we went home after less than 24 hours in the hospital. And then once we were home, he was an easy kid. Laid back. Ate like a champ. Slept (as well as any other newborn sleeps anyway). Smiled. Constantly smiled. Coo'd. He was so stinkin' adorable. Perfect. I didn't see it. Met all of his milestones on time. Rolled over. Sat up. Crawled. Walked. Grew. He was 100% healthy and thriving. So I never suspected. Not once. And I honestly don't think it was denial or a defense mechanism. He just didn't look like a kid with Autism. Not one that I'd ever seen or heard about anyway.

Take a look a couple of photos from that time -  tell me he doesn't look like he is engaged, social and just a typical (albeit over-the-top adorable), kid? It sometimes pains me to look at these pictures. Before we knew. Before our lives were turned upside down. When we were a normal, busy family with our two perfect little boys.

And wow were we busy! Our boys are 15 months apart. We were flying by the seat of our pants - in survival mode just to meet their very intense, very different-staged needs. It was organized chaos.

So believe me when I tell you I was completely blind-sighted. I will never, ever forget the day the Autism word was first uttered.

He was meeting all of his milestones. Except one. And that one turned out to be everything. He wasn't talking. At 18 months and then almost 2, the language wasn't developing. He had words - here and there but no real progression. Just a late talker. Not uncommon. And it made sense - his brother never stopped talking. Why did he need to? Also it didn't seem fair to compare the two - of course they would be completely different kids and develop at different rates. I really, truly wasn't worried.

Just to be on the safe side, we were referred for an evaluation through the early intervention team at our local school district. A routine visit in our home. Where they interviewed me and observed B. I couldn't tell you one single thing they asked me or a single thing they did but I can tell you exactly how I first heard the word Autism in connection with my son.  It went like this: a simple, loaded question -  "What do you know about Autism?" ... and at that point, I think I went into some sort of self- preserving shock because I don't remember another word. It felt like the biggest punch in the gut I have ever experienced. Still does.

It only got tougher from there. One of the absolute hardest times we've ever had on this journey were those months when we didn't know. When we wondered. Analyzed each and every thing he did. Is that Autism? Or is that just being a 2 year old? He just did x,y,z - see? He's fine. Definitely not Autism. But wait - that does seem like one of the characteristics, so is he? Look at that other kid - he's doing the exact same things as mine. We're good. Unsure of how to move forward - not wanting to waste time if he needed help but not wanting to put a label on something that wasn't there. In Limbo.

Do yourself a favor - if you've never had to look at the list of autism traits and characteristics, DON'T.  I promise you will see the signs and question so many people you know and probably parts of yourself. We ALL have them. Some of us have lots of them. And yes, B had several. In hindsight, maybe some of them should have been obvious. He didn't really point, didn't bring things to us and show "joint attention". I didn't know that term at the time but it's a huge piece of reciprocal communication and his wasn't typical. His eye contact was apparently more fleeting than I realized. And he was hard to teach. He would do something one day (like waive or say a certain word) and then we could never replicate it. There were signs. Just really subtle ones.

No one was on board with this news. I remember my parents' reaction - no, no. definitely not. And if, by some chance, they're right than he has the absolute mildest form I've ever seen. Personally, I was a mess. All I ever wanted to be was a mother and this constant internal struggle was robbing me of the joy I should have been experiencing. It was such a confusing, gut-wrenching time. Pure torture.

One of my very oldest and dearest friends happens to have a daughter who has Autism. I remember calling her and how she just listened as I went over all of my confusing signs and lack of signs. She, with the wisdom gleaned from a few years of living in the world I live in now, offered up some very simple yet very profound advice. Having never met my son, she didn't try to diagnose him for me. Instead, she told me that as he got older, it would become obvious and there would be no doubt. Either the gaps would close between him and his typical peers or they would widen. She was so right.  Boy was she right. And let me tell you, they have WIDENED more than I could have ever imagined.

Yes. There is no doubt. His Autism is real. And it's anything but mild. And most of the time, that's okay. It's easier to move forward when you know a little bit about what you're facing. There is nothing worse than ambiguity.

I wish I could get inside your head

You fascinate me. Truly. As your mom, I know you better than anyone. And yet I am completely dumbfounded by almost everything about you. I can't understand how your brain works and despite all of my efforts, it is so hard to relate to you. Why you do the things you do. Why you are how you are.

Let me count the ways.

Why, when you have one of the best beds in the entire house, do you choose to sleep on the floor in your closet, buried underneath as many blankets, books, stuffed animals, clothes and whatever else you can find?

Why do you refuse to speak when you are able to say pretty much anything we ask you to repeat?

What is so amazing about Thomas the Tank Engine and friends? Or Toy Story? Elmo? SuperWhy? Your favorites have lasted your whole entire life.

Why are videos in foreign languages just as good as in English? And what makes certain parts of them so hilarious to you?

How do you flick your wrists with such force that they make a clicking sound? Both your brother and I have tried and failed.

How can you navigate your speech device faster than I can even find the words but not ever consider using it to communicate unless prompted?

Why do you turn on every single light in every single room and then leave the room without turning them off?

Why is it fun to watch the same 3 seconds of a video over and over and over? Or watch in fast forward? Or have 2 iPads going with different videos at the same time? Under a fitted sheet. In a pile of blankets.

Why, when you LOVE to eat and food brings you incredible joy each and every time it's presented, do you REFUSE to eat anything new or take a bite of something you haven't had before? Why won't you eat ice cream when you love all things sweet? Why won't you drink anything other than water?

How can you be so full of joy and laughter when this world is so obviously not designed for you?

How can I love you so deeply when we have never had a single conversation?

And yes of course, I do actually know the answer to each and every one of these questions. It's the same one every time. Because Autism.  And though I may never truly relate, I will never stop marveling at all the things that make you uniquely and wonderfully YOU.

Family Vacations

We just got back from a wonderful "family" vacation in Vancouver & Victoria, B.C. We had a full week of sight-seeing, relaxing, spending quality time and making memories. It was great. Only one thing was missing. One very important thing. This was a family vacation for three - our sweet B was back home the entire time.

You see, we have a choice when it comes to vacations. We can either choose an exercise in tolerance, resilience and exhaustion or we can leave B behind. It's not an easy choice. Neither feels exactly right. We know that this was the right decision - there is absolutely no way he could have made this trip. We were continuously reminded of that: 3.5 hour flight, 1.5 hours in line at customs (NO WAY), crowds, restaurants, quiet, adult-oriented pools & hot tubs, tours, and then topped off with a 12 hour overnight delay coming home. Honestly the list is endless. He would have been miserable and 90% of what we were able to do would have been impossible. And we know that we owe it to our other son to get to experience what a vacation is supposed to be. One where we don't have to leave early, stay in a place as far away from other guests as possible, be kept up all night, and skip most (maybe all) of the tourist attractions.

And let's be honest - we NEED it too. We need the respite. A break. A break from the constant noise, the unexpected, the need to always keep our guard up, the meltdowns, the crying, the food battles, the meds, keeping track of him at all times, remaking beds from under the stripped down piles of his treasures, bathing him, wiping his hands, therapy, paperwork - all of the extras that life with B entail. And while I don't really miss any of these things when we're away, boy do I miss him. I miss the laugh, the smile, his joy and most of all, I miss feeling like a complete family. While we were gone, he was in the loving care of his saintly grandparents (a total Godsend). He went to school, followed his regular routine, was loved and spoiled and perfectly happy. He was exactly where he needed to be.

But here's the truth - he's getting robbed. Autism robs us of so many things and this is one that hurts a lot. While we may have long ago reached acceptance and love for the boy we have, there is a grieving process that happens recurrently and probably always will. We grieve for the things he can't do and the things he misses out on - the things we miss out on as a family. The things he may never do. The family life we thought we were getting vs. the one we are living.

And there's guilt. Always guilt. B is better off at home but that doesn't mean he doesn't feel like he's missing out. There have been several painful reminders of this. Like when he was around 3 and I took his brother to see family. B. carried a picture of me the entire time. I'm not sure he understood that I was coming back. When I did return, he launched into a long string of babble that, although completely incomprehensible, felt like he was telling me all about what I missed.

Or another time when he had to ride along to bring the 3 of us to the airport. And he excitedly unbuckled his car seat - ready to hop out - only to be told he wasn't coming. I remember handing him a pack of starbursts as if this was somehow a consolation and fighting back tears as we turned our backs and walked away. I couldn't look but I'm pretty sure he had tears too.

He has 2 personal suitcases that he packs with random treasures and puts in the mudroom, the garage, even the back of the car. He may not know what he's missing out on or realize that he wouldn't enjoy what we're doing, but he definitely does know he's missing out.

One of his favorite pastimes is looking through family photo albums. I cringe every time there are pictures from vacations he wasn't part of. He knows. I know he knows. And it isn't fair. It's just not. Yes, there are families who can't afford a vacation. There are kids who have never been anywhere. Not once. Not ever. But for most families, this is a highlight. Not always perfect- not even always easy (yes, I get that vacationing with little kids is an entirely different kind of vacation). But intentionally leaving out part of the family for the sake of the others - that's Autism. The part of Autism that we don't like to talk about - the darkness that we fight against every day. It isn't fair - not to us and especially not to him. But that's Autism. Fair isn't part of the equation.

Becoming Brothers

First Published on Finding Cooper's Voice  https://www.findingcoopersvoice.com/2018/08/17/becoming-brothers / AUGUST 17, 2018

We have two boys – just 15 months apart. Usually when I tell someone this, I get comments like how lucky – they will be BEST friends. Do they get along? Do they fight a lot? I bet they keep you busy.

Well, the last of these statements is certainly true but the others – I never thought it was possible but I think maybe we’re getting there.

They are now 12 and 10. Our younger son has pretty severe/ nonverbal autism and his big brother is as “typical” as a kid can be because really, what qualifies as typical?

Autism has been our world for over 8 years now – our official diagnosis came when B was 2 and big brother D was 3. And let me tell you we DOVE in.

We did full-time, in-home therapy for 40+hours a week for 5.5 YEARS. My sweet firstborn grew up so differently than your average family. Our small home was filled with therapists –sometimes as many as five or six people in our house at a time.

From our older son’s perspective, his brother had super fun playmates giving him undivided attention at all times. He couldn’t possibly understand that this “play” was actually very, very demanding and difficult work for a two-year-old. Yet somehow, he has never once seemed resentful. This is all he has ever known.

Still, the parental guilt was and is so real and so strong. We overcompensate – never wanting our older son to feel the weight of responsibility for caring for his brother. It’s been pointed out to me that it’s common practice to ask an older sibling to “watch out for your brother while I run upstairs”, “make sure he’s safe”, “can you help him do xyz?”.

Not in our house. We never asked. It didn’t seem fair.

Whenever I’m asked about their relationship, I’ve always explained it as raising two only children. The two of them function independently of one another and their worlds rarely intersect.

Big brother is so busy learning, growing and figuring out his world and little brother is immersed in therapy and his autism world. The two worlds don’t really collide. Although B always seemed to have a special affinity for his big bro, they truly did not have much of a relationship.

In fact, our older son never even spoke directly to his brother – it was always “mom, can you get B to move?” or just no acknowledgement whatsoever.  Dad and I tag team and try to give our older son as many “normal” experiences as we can while managing our very challenging (albeit amazing) youngest guy.

There’s a lot of stress and a lot of isolation and we just do the best we can.

In the last year or two, something has changed with my firstborn and it happened independently of us and in a magical, beautiful way.

All of a sudden, he started showing a strong interest in his little brother. Practically overnight, he became empathetic, watched out for him and even started talking to him. I’ve heard some wonderful things like “B, your smile lights up a room. Don’t ever change”.

And he’s asked more questions about him like “what do you think he’s thinking?” “Do you think he’s happy?” He is also interested in teaching him and in playing with him on his terms.

One time, I reminded him that sometimes B can decide he’s done and it can look like a shove or total meltdown. His response was “we’re brothers. that’s kind of what all brothers do mom”.

What is even more amazing is that he includes him even when his friends are over. He doesn’t seem embarrassed or ashamed in the slightest. I can’t tell you how amazing it is to watch. I stare in awe with a tear in my eye on a regular basis these days.

I have no idea what changed – something just seems to have clicked.

Are they best friends? No, I wouldn’t say so. But I think what they share is even more special and remarkable. They are both teaching each other in ways we never could and for that, I believe they (and we) truly are so very lucky.