Firsts

 

When your child can't communicate, you have a lot of "firsts" and they all feel as monumental as the first day of preschool or the first time you are away from each other - the first time you trust someone other than yourself to care for your baby. I know - he's almost a teenager but it doesn't get easier. If anything, it's harder the older he gets. I am used to being his voice and his advocate and anticipating his needs. And he's unbelievably awesome but he does comes with some challenges. I want other people to see the awesome - not the challenges. I want them to know him like I do and to care for him and protect him and really SEE him.

Today was a big first. He went in-person to 7th grade. Brand new school for him where he doesn't know anyone and they don't know him. And he has been home since March 13th. Almost SEVEN entire months where he has not left our sides. No separation. No independence. When you factor in a a scary health pandemic, it was more than a little nerve-wracking to let him go. 

But this kid - this amazing Rockstar of a kid walked straight into school without looking back. He slapped on a mask and acted as if he'd been doing this every day of his life. SO Brave. So incredibly resilient. I don't know how he does it - how do you face a world that doesn't understand you? I don't think I could. And he didn't just face it - he rocked it!  He came home with the biggest smile - full of  giggles and JOY.

It's strange and a little hard not knowing what he did all day after all this time together. I'm paranoid and overprotective and I guess I need to work on getting over that because there are no limits to what this young man can do. I am learning. He teaches me every day. Every single day. More than I could ever dream of teaching him. 

Autism & A Pandemic

In my wildest imagination, this is a title I never, ever could have dreamt up. As an Autism parent, I plan. Prepare. Plan. Practice. Plan. Repeat. And plan some more. The very simplest things require an obscene amount of preparation in an effort to prepare for the worst but hope for the best. We don't do anything on a whim. Something as simple as a haircut takes an exorbitant amount of preparation. And bigger things like swimming, traveling, even showering - well, we've been chipping away at them for years.

Lately, I've been prepping for a huge change for B. He was accepted into an Autism Charter school for next year. It's a lottery - only about 20 spots and it starts in 7th grade. I put him in the lottery knowing that if he were to ever get in, this was the time. But to be honest, I was kind of hoping he wouldn't get in so that I wouldn't have to make the decision. He has been doing so well and why rock the boat? His current "school"/therapy center has been his home for 4 years now. It's not perfect and this last year has been filled with many, many frustrations for me but he is HAPPY. He is happy to go every day and happy when he comes home. And I've let that be enough. We can't ask him how he feels about it so it also feels kind of mean to rip him away from everything and everyone he knows.

And then in January, we found out that he did, indeed get into this other program. And I was weighing the options. My biggest concern was that it doesn't go year-round. The primary selling point of his current program is that it is year-round. He never has more than a day or two off at a time for 365 days a year. The last time he was home in the summer was after 2nd grade and he ended up in the hospital. The lack of routine and structure was too much for him and he stopped eating and drinking and was hospitalized for dehydration. I'll spare the details but suffice it to say it is the single worst experience we have ever had with him. I still have some PTSD and nightmares.

But he's a different kid now. And I thought maybe we owed it to him to give this a shot. I've been planning and prepping - looking into summer programs he could do this year before it becomes a necessity. Making contingency plans. Timing when and how to notify his current program, how much to tell him and how etc. etc. Planning and worrying and losing sleep.

And then along came a pandemic. And B. is home with literally NOTHING to do. None of the normal things he does every weekend like swimming, going to Target, playing on the playground. And none of the extra things that I was planning for summer like camps and extra OT and speech and maybe even some fun new adventures.

And he is doing amazingly, shockingly well. Not without some tears and frustrations but I think we can all relate to that. He has never, ever in his life had this kind of unstructured time. It's unsettling for all of us and I thought it would be devastatingly hard, maybe impossible for him. He was my number one fear in this whole thing. I have no idea what he understands. I keep telling him we are trying to keep him and other people from getting sick and that this is TEMPORARY and eventually, life will go back to normal. At least that's my hope. We are on week 3. It has been 18 days since anyone besides us four have been in this house and 20 days since he last went to school...or anywhere at all for that matter. 20 days! He seems to have kind of settled into this new lack of routine. He is still finding and bringing us joy. He now can enjoy taking a very short walk around the block even though he can't go on the playgrounds. He has done 3 sessions of telehealth speech and OT with limited protesting. He is loving the extra baths - it fills some time and it's something he enjoys. He is still giddy for every meal even with the limited variety. He is watching movies, doing huge 1,000 piece puzzles and figuring out how to fill the time. Am I worried about regression and getting back on track? I'd be lying if I said no. But I'm not paralyzed with fear that he won't make it through. And I feel like he can absolutely handle changing schools and not having a year-round program. I actually think he will thrive. And that, my friends, is my silver lining to this whole crazy COVID-19 experience.

Be safe. Wash your hands. Love your people and give yourself a whole lot of grace right now.  And be like B. - find some joy in this weird, abnormal time. We will make it through.

SLOW but steady progress

B. started adaptive swimming lessons when he was just a little tyke. I can't remember the exact timing but it has definitely been at least 5 years. Five Years of various types of 1-1 lessons and/or aquatic therapy.

He is terrified of water but also loves it at the same time. He has never, ever, not-once, put his head under water. Even showers and baths are a challenge since he doesn't like water on his head.

But he LOVES to be in the water. Not at first. In the beginning, we would spend the entire half hour lesson just sitting on the steps because that's all he was comfortable with. Gradually though he has come to love it and it's one of his very favorite things to do.

Along with his newfound love comes newfound, very real and very paralyzing fears. I don't think he has the awareness to know when water is safe or when it gets too deep.  And he definitely doesn't know that he shouldn't go in it alone. Since we are walking distance to both a lake and a neighbor's swimming pool, this is terrifying. Don't look up the statistics about kids with Autism who drown. Trust me.

So we keep up with the lessons which to be honest sometimes feel like a waste of time. Hours and hours of him walking around the pool, playing and maybe trying a little bit of floating with a noodle. Every week. For YEARS.
But sometimes patience pays off. Just last weekend, for the first time ever, he "swam" the entire length of a pool by himself. Again, his head is above water and it doesn't look like swimming the way we think of swimming. But he is keeping himself afloat. He has learned how to stay above water. From a safety standpoint, this is HUGE progress. And hope. And just enough of a push to keep going. Week after week. Month after month. And year after year. Who knows - maybe someday he will be swimming circles around me. Take a peek - SO proud of him!

Family Photos & Autism

I love my little family and I treasure these years when the boys are young and at home. They go so fast and I want to remember them. Although we are constantly taking pictures, we don't ever have opportunities for shots of all 4 of us. We definitely haven't done it every year but most years, I coerce 3 somewhat reluctant family members into a family photo session. These aren't easy with any family so you can imagine what it's like with a kiddo on the Autism spectrum. I have some doozies!

We just had this year's taken and I'm thrilled to say that we have several that I absolutely LOVE. We are usually lucky to get any that are decent and lots of times, they are just individual shots - not the 2 boys together and almost never all 4 of us. We've come a long way. B tried SO hard (too hard). I almost want to frame these instead of the good ones though. They make me giggle. Hope they bring a smile to your face too.

No Filter

"Look at Dad"

"smile"?

Autism & Travel

B looking a little nervous before take-off

Traveling with kids is hard. It takes a lot of planning and preparation. Traveling with a kid on the spectrum takes "hard" to a whole new level.

All of our family lives out of state. So travel has always been somewhat of a necessity. On average, we go once a year - with a few additional trips over the years. I'd estimate B has been on an airplane at least 20-30 times. Our experiences have varied and although he has done it often enough to have some routines developed, it doesn't get any easier.

Preparation begins early. We have to try to make it as easy on him as possible - only direct flights and under 3 hours is about his limit. We sit in 2 rows - with B and I behind his dad and brother in case he decides to kick the seat. With him in the window and me in a middle seat so he is never sitting next to someone we don't know.

We've practiced as much as possible. An at-home simulation in therapy isn't quite the same but we've done it. We took 2 classes at the airport (Navigating Autism) which were AMAZING but again, not quite the same as the real thing. I talk to him in the days leading up to the trip and explain where we're going etc. We look at pictures. I have no idea if this helps him or makes him more anxious but I feel like it's better to warn him.

We have a strategy for our time at the airport. We try to make sure he has enough to eat that he isn't too hungry but not too much so that he won't want any of the snacks I bring since that's one of the only ways to keep him busy and quiet (at least for a short while). We have a prescription for anxiety medication above and beyond the daily dose he already takes. We time it so he has it as close to the flight as possible - enough time for it to hopefully kick in but not too much so that it wears off mid-flight. To be honest, I'm not sure if it has any effect.

We have TSA pre-check to try to minimize waiting in lines as much as possible. Security has been a source of stress (meltdowns) in the past. We inevitably will have to wait anyway because his weighted blanket always triggers a second security check.

I pack 2 carry-on bags stuffed full of things for him. I put a book in there for myself but I have never once even taken it out of the bag. My attention will be laser focused on him.

I spend $20 or $50 beforehand buying novel toys, fidgets or whatever else I think might possibly keep him busy. And for 2.5+ hours, I will hand him things and try to keep him occupied and reasonably quiet. And I will be on pins and needles and holding my breath. We usually go through 8-10 brief clips of dvds (rewind and repeat over and over) and a variety of toys and fidgets that he will use to stim for a minute or two at best. Sometimes a puzzle will work. Or putty or stickers. Nothing lasts. He will eat lots of carefully planned snacks to keep his ears from popping and for one other way to keep him busy,

Having just gotten back from a weekend trip, I thought I'd share what a "successful flight" looks like when autism is part of the picture:

On the flight out, we were delayed 30 minutes. I walked all over the airport with him in an effort to burn as much energy as possible before he had to sit for so long. Sitting and Brady don't really mix. I had 2 different tracking devices with me but I couldn't get him to keep either one on or with him so I clung to his hand tightly and hoped he wouldn't let go. I am only about 20 lbs heavier and 4 inches taller so he will soon surpass me in size. A scary thought. My stomach was in knots.

We went to a McDonald's in another terminal because I was reasonably certain he would eat that and we wouldn't have to be in a busy restaurant. We were both hot and sweaty before we even got on the plane. I took him to the women's restroom twice. We were lucky that there was one with a huge handicap stall and a separate sink - usually we cram into one tiny stall together and I remind him over and over not to open the door before I'm finished. I have to make sure I don't have to use the bathroom on the plane because that would be impossible. He would never understand if I got up and left and I could never leave him in a row with a stranger.

We sat at the gate until he got antsy and started being loud and then we were on the move again. It's funny - in all the times we've been in airports, I have never once seen another kid with disabilities. We always seem to be the only ones. And we always get a lot of strange looks and glares.

Once we got on the plane, he pulled out his weighted blanket, headphones and dvd player before I even sat down. This is good. He knows the routine. On this particular flight, he fixated on the window. It became an obsession. He opened and shut it every 3-10 seconds for the entire duration of the flight. Thankfully, we were sitting by the kindest grandma who understood when I told her there was no way for me to stop him. She complimented him several times on the flight and told me at the end that I was an "awesome mom". I felt like a warrior.

Upon landing, I let out my breath. We were lucky. We have had many flights that didn't go so smoothly. It's not easy being under a microscope in a confined space with someone who is not skilled in self control, completely unpredictable, never still and never quiet. We've had dirty looks and one unforgettable time where the flight attendant comped drinks nearby and where he and I both cried - him because he wanted to be anywhere but on that plane and me because there was absolutely nothing I could do to make it any easier for him. We've had trips where we thought we'd never make it and swore we could never do it again.

And that's just getting there. Once at our destination, we face new challenges. It's so hard for him. I think he wants to go because he always seems excited but then the reality of so many different experiences and none of his usual comforts and routine are often too much. We've had trips where he didn't eat, many where he (and us) didn't sleep and lots of meltdowns and uncharacteristic behavior. This time, he curled up in a fetal position in bed in a back room for hours after we arrived. He was shivering at times and crying at others. I thought it was due to the medication he'd taken but he has never had that reaction before and he was fine when we came home so I think it was just how the anxiety and stress manifested.

We do it because we will never leave him behind for a holiday even though holidays themselves are super stressful for him. And because he's part of our family and we want him to be part of our extended family. I do often wonder if it's all worth it or if we are just torturing him. With a child who can't communicate, you never truly know.

On the return flight, we left on time but had less time at the airport so that was stressful. Another full flight with another stranger next to us. A lot of times the return trip home is the harder one because I feel more confident after just having traveled and because we're a bit tired and worn down and sometimes my bag of tricks isn't as carefully thought out and fresh.

This was another overall good experience. Our only issues were that he spilled an entire cup of water on me. I should have known better -  I usually never get a drink (that whole no bathroom break issue) and now I have another reason why I should just go thirsty. Also he was determined to destroy a stress ball that I bought for the trip. He was ultimately successful and there was a white, sticky mess everywhere. But that $10 ball bought me a good 30 minutes of entertainment between the two flights so that was money well spent. I'm used to cleaning up messes.  I did almost have a panic attack when the battery was dead on the dvd player but Dad saved the day by finding a power outlet.

This is how we travel. We plan for the worst and hope for the best. It's all we can do.

As we landed and I finally exhaled, I looked over at the woman who was sitting next to me. She had been engrossed in a book the entire flight and never said a word. So it surprised me when she smiled and spoke to the little boy across the aisle from her. He was maybe 7 or 8 and apparently he was her son! What a crazy different experience. I never even knew she was traveling with a kid and for me, my kid was all I was able to focus on the whole time. I might have been jealous in the past. This time, I was just relieved that she was able to sit next to US and READ and be undisturbed. In the world of Autism, this is a victory. We are warriors.

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.