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.

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.

Misunderstood

My heart is breaking. Again. We are having a really tough school year. Something BIG has been happening with B. I don't recognize the version of him that school is seeing. My sweet, infectiously happy lovable little boy spends at least half (from what I can gather) of his time either crying, yelling or freaking out in ways I had never seen until this year. I have been called 6 times in 13 weeks because his behaviors led them to believe he was sick. And he wasn't sick. Just sick of school.

It's so tough to be on the sidelines. I am not there to see what's happening. I can't jump in and clarify or make suggestions like I did with home therapy. With a kid who can't tell me anything about his day, this is tough. Anyone who knows me knows that I'm not sitting back silently. I call meeting after meeting, ask question after question, escalate, complain, likely drive everyone there crazy. And it's not enough. It's not getting better. I don't know what's going on but my suspicion has been that the people working with him just simply do not get him. They don't know what he's capable of and don't know how to motivate him or how to teach him. He's frustrated and he's acting out.

The amount of communication I get from the school is actually pretty good - much more than I got at his first school. I see pictures almost daily and I get a written synopsis. The synopsis is rarely positive but he looks like he's having fun in pictures. I'm trying to let go a little.

Once in a while, I get videos. This is as close as it gets to actually seeing what's going on. There was one a few weeks back where some huge mistakes were being made. Innocent, well-intentioned but just wrong.

Then there was today. I watched a video of him practicing site words and he was clearly saying "I want bus." Not just once. Over and over. "Bus. I want bus." Then, when that didn't work he switched to "me sick. I want bus." He was completely ignored and the professional continued to repeat the site word as if he was just saying the word wrong. Here's a kid who can barely talk and struggles with meaningful communication in the most severe way you can imagine. And he was trying with words to let them know what he wanted. And it got him nowhere.

He IS sick. He has a cold. I wouldn't have wanted them to send him home. I just wish they would have acknowledged that he was communicating and advocating for his needs. This is HUGE. Stop. Take a break. Let him know that you heard him and understood what he was saying. We have spent YEARS trying to get him to say more than 1 word to request something.  And it really wouldn't take much to teach him that talking isn't worthwhile.  It already is his very last resort no matter how much he wants something. Imagine how that must feel. I know how hard that was for him to come up with words to say and they fell on deaf ears.

I've called the principal and the teacher, the teacher's supervisor and the supervisor's supervisor. But I can't take it back. I'm not sure I can even make them understand why this is such a big deal. What's worse is that I can't talk to B and explain it away or make it better like I would with my other son. I can't fix it. I can't take away his constant struggles.  I can't tell him it's going to be okay. I can't make the Autism go away. Believe me, I would if I could.

Welcome to Holland

Welcome to Holland. Er, I mean Iceland. Wait - did I say Iceland? No, we are actually headed to Hong Kong. You thought we were in Hong Kong? Sorry - this is Germany.  And so on and so forth. You get the point. If you've never read it, there is a beautiful piece about having a special needs child called Welcome to Holland. You can check it out here: http://www.our-kids.org/archives/Holland.html

I think it is controversial in some crowds (what isn't?) but it resonates with me.  Except that as time goes on, I feel like we are traveling to new, completely foreign places more and more often - sometimes multiple times in one day. Just when I think I've sort of got something figured out or at least have a handle on it, B totally changes it up. Right now, this is the most difficult part of parenting our not-so-little dude. I am a type A planner by nature and the unpredictability just absolutely kills me.  For example, sometimes a trip to Target is fun and B. happily strolls about like his good natured self. So I gain confidence and set out to repeat our fun excursion. And the next time, it may start out exactly the same but then all of a sudden, out of nowhere he has a nuclear meltdown. Now those of you with toddlers are probably shaking your heads because this is exactly the way they behave all the time.  However, there are a few key advantages we no longer have:

1) A large majority of people can relate and empathize with the craziness of toddler behavior
2) You are much bigger than said toddler and can pick him or her up and remove them from the situation and
3) The toddler will grow out of this behavior. As sucky as it may be, you know that this too shall pass.

That third one is a doozy. It seems that our issues will not pass - they just morph into new, more difficult issues. The older he gets, the harder it is. I have always been a bit hesitant to reach out to support groups and families with kids on the spectrum. Each kid is so different and I honestly didn't really want to know what might lie ahead. I think this has actually been a really good decision. Ignorance can be bliss and there's nothing we could have done to prepare for it or change it in any way. I'm glad I didn't know where we were headed. Because let me tell you, it is getting SO.MUCH.HARDER. I actually miss the younger days. Even with all the therapy and chaos and zero time to myself, it was easier in a lot of ways. I felt more of a connection to B. and I felt like I knew how to parent him (for the most part). I used to always say that despite his diagnosis and challenges, "at least he's happy". And that kid is still with us - the one whose smile and laugh lights up a room... the happiest kid in the entire place. But there's this other side now that is explosive and angry and miserable in his own skin. When he is that kid, I don't know how to relate to him. I don't know how to help him. I can feel the stares and the judgment when we're in public and I can't do anything about it. I can't even describe how difficult it is to see him like that and to be completely helpless to make it any better. So I take a deep breath and wait for it to pass - wait to arrive in the next destination. And hope against hope that it's a place where he's happy and okay and that he knows on some level that I would do absolutely anything to fix whatever it is that is making him feel this way.

School Daze

Soooooooo... we started school. And it was what can only be described as an epic. fail. (borrowed this term from a bunch of first graders at a party this weekend).

It started out rough. I got a call the thursday before Monday's school start from B's soon-to-be teacher. She was calling to say that her leave was starting early and that her sub fell through. In a nutshell, there was no teacher assigned. Deep breath. Mini breakdown. And we keep going. We go to the open house that same night. The classroom was empty. No one there to greet us - no one to introduce B. to this new "home".

Monday came and we went to school. B was always so excited to go to this place to drop off his brother. I expected the same reaction. On the drive to school, he was silent. I kept telling him that this was his first day of school, how exciting it was. Meanwhile, I was a nervous wreck and I'm sure he felt it. When we arrived, he refused to get out of the car. Crying, pleading with me with his very limited vocabulary "no walk, no backpack, pick me up". I got him in and we made it to the first day. I think I spent more time at school that day than I did away, but we got through it. There was a sub - hired just 2 days ago and we were "lucky" to have her. B. was happy there. This we could do.

We muddled through. B. had one more rough drop-off and then he was totally on board... excited to be there and his happy, giggly self.

But it just wasn't right. Turns out that hiring a teacher 3 days before school starts does not necessarily lead to the best fit. We tried. Gave it the benefit of the doubt. This was new. It was going to be an adjustment. They were just getting to know B. and it would take time.

So I waited. I tried to believe it was going to be okay. But I kept getting the wrong message... the teacher telling me that he was getting "the cadillac of services" while other students were suffering. Random drop-ins where he was almost always alone, bouncing on a ball. I had no idea what he was doing all day. I volunteered. I popped in. I pushed and I got permission for our therapists to accompany him and train the teacher. I met with the principal. I made phone calls to the district. I talked to other parents to see if maybe it was just me. I felt so disconnected. The only communication I received said things like "happy, ate his lunch". But what was he learning? What was he doing? Who was with him?

In the midst of this, something beautiful happened. I saw B. through the eyes of other kids. Not as the little brother. Not as our kid. But as B., the 1st grader, who other kids wanted to get to know. I was shocked and overwhelmed by this response. Kids wanted to help him. They wanted to know him. They didn't view him as a freak. They were interested in how he communicated. They wanted to be with him, wanted to be his friend, wanted to learn more about him. It kept me there. It made up for the lack of communication, the fact that we were losing skills, moving backward.

And then it got worse. B. wandered off one day - unsupervised. He still had no set schedule and I still wasn't getting any communication about what he was doing. I hit the roof when I found out he was unsupervised. The teacher became the scapegoat and they fired her that day.

So we were back to square one. No teacher. No one to look after these kids. Their solution was to hire a sub who did not have a special education license until they could find the perfect fit. I made it through a couple of partial days of this. How can an untrained teacher be responsible for my mostly nonverbal son? My final straw came when I picked up my boy and he had unexplained and unnoticed blood on his clothes.

I took him out and haven't looked back.

We're at a new school now. It too was a rough start. B. FREAKED out like I've never seen and I chased him in a parking lot, in the snow, for an hour and a half trying to coax him back in.

We've only had a few days so far. Too soon to tell. But I get videos and pics about his day and his teacher cares so much that she notices things like chapped lips and runny noses. I can't fathom that he would ever have blood on his clothes there without it being noticed. He is not only cared for there but he is loved already.

We're in a better place, I think. Thank goodness B. is a resilient kiddo. He has been through so much. It makes me so sad. He is such a great, sweet kid. In fact, his classroom was filled with great, sweet kids. They were another reason I wanted to stay. They deserve more. They deserve better. I hope we have found better. I hope it's better for all of them too.

The next chapter

In just a few short days, our little B-man is starting first grade. He'll go 3 days a week for the first month and have a little bit of therapy on his off days. And then he goes full-time and the therapy fades out over the next 2 months. After 4 years of full-time therapy in our home,  it's a whole new world for him and for our family. And frankly I'm terrified. I remember when I first dropped my kiddos off at a  Friday Morning Out program. They were not quite 2 and 3 and it was the first time I formally separated from them. And I was nervous, worried and apprehensive to be away from my babies. It was tough. But we did it! Everyone was okay.

Here we are now 5 years later with more parenting experience under our belts, more of an understanding of our kiddos and in B's case, his special needs.  Not to mention we have MUCH bigger, older, less fragile little people. So this should be easier, right? I've been down this road... I eased in to part-time preschool, then half-day kindergarten and last year, the real deal: first grade with our older son. And sure it's hard for any parent to let em go as they start to gain their independence.

But this. THIS is so much harder. Because truly there is no one quite like B.  I honestly believe that. For six and a half years, he has been under my wing. I am almost always with him and if I'm not, I know exactly what he's doing and I know the people he is with. I know what challenges he might face and I know how it will be handled. I have been trained to do all of the same programs with him. I get it. And we've created an environment where we celebrate him constantly. It's a bit of a bubble, yes, but here we focus on all that he can do and every single day he has cheerleaders. His therapists are the closest thing he has to friends. They are his buddies. They know how to play with him. They can understand (most) of what he says. A lot of them have gotten very attached to my sweet little boy. He is loved. Their boundaries are different than what I expect them to be in school. He gets hugs, piggy backs, snuggles, tickles and lots of physical attention that I don't see being equal at school. How can we take that away from him? This bubble is a lot easier than when we take him out in the "real" world and see how others react to him and how different he really is. Are they going to see the real B at school? Will they appreciate how special he is?

What he doesn't get at home though is other kids. And, let's face it, reality. There is a whole world out there that he is itching to experience. That part I think he'll love. Here's a kid who gets excited to go no matter where it is: the Dr., an errand with mom, dropping his brother off at school. As the other kids would march in to battle with solemn faces at the elementary school, B would skip in with absolute glee -  singing. A couple of times last year, he cried when we left for the parking lot. On that front, he is more than ready. He has spent way too much time confined to this house. I am excited for him to get to experience what other kids his age experience.

B is ready. And I will get there. Just like 4 years ago, we are jumping in with both feet. So if you see me next week (or let's face it anytime next year), I will be the mom beaming with pride and blinking back my tears. Look out first grade - here we come!

Love/Hate

I love my child. Fiercely. In a way that I have never loved any other person in my life. He is amazing, beautiful and pure. But I hate his Autism. Hate it. I would give just about anything to just make it go away.

This may not be a popular point of view. People who have Autism want to be accepted and I've read countless articles about how we as parents should embrace the whole person, shouldn't try to change them, etc. etc. And, while I do try very hard to find the positive in B's diagnosis (there are definitely some pros), the truth of the matter is that it sucks. It has such a huge impact on our world and our family and has changed everything about it. These are just a few of things in no particular order that are on my mind lately. I should also point out that this is all from my perspective... I hate it times a million for B. I can't imagine how horribly frustrating it must be to be him - unable to communicate, in therapy 40+ hours a week, so different from other kids, without friends. How lonely he must be. Here's what keeps me up at night:

1) Sleep - literally and figuratively. It used to take B. two or 2.5 hours to fall asleep at night. Now, with the help of melatonin, he falls asleep almost instantly. And some nights, he sleeps all night. Other nights (lately pretty much every other night), he sleeps until about midnight and then he's UP. The boy throws a party in his room for as many as 6 or 7 hours at times. He very loudly sings, laughs, yells and RUNS on his bed and God knows what else. The house shakes sometimes. I guess we're lucky because he does not require us to actually get up. It's just not easy to sleep through and I usually lie awake worrying about the fact that both he and I should be sleeping. When we visit family or take a vacation, it's worse because if he doesn't sleep, nobody sleeps. Nothing puts a bigger damper on a "vacation" than 3 or 4 people (my other son blessedly sleeps through it most of the time) who are so sleep deprived, they can barely function.
2) Not being able to do things as a family. We usually have to choose whether to do something the way most families would or whether to try it with B. It's not his fault (obviously) but it is very tough to go places and do things with him. Sometimes it goes smoothly and sometimes he sits down at the base of an escalator and refuses to move. It is completely unpredictable. This is getting MUCH harder the older he gets because he's too big to pick up and I literally can not make him do things a lot of the time. In fact,  most things are getting harder instead of easier. We are supposed to be moving in the opposite direction. So we do a lot of things as a party of 3 - going out to eat, going to movies, birthday parties, playdates, even vacation sometimes. It's easier that way and yet it's so much harder to leave him behind.
3) The crying. I listen to B cry at least 5 or 6 times a day. Think about that. He is 6. How often do you have to hear your 6 year old cry? For my 7 year old, I'm thinking it's maybe once a month. And B's cries are heartbreaking because most of the time I don't know why and I can almost never make it any better. He pushes me away and tries to make the tears go away too. This is true whether he is hurt, sad, mad, sick or frustrated. I can only guess the reason and I'm pretty sure I'm wrong a lot of the time.
4) Our lifestyle that no one can truly relate to. For three and a half years, our world has revolved around ABA therapy. We have a team of 6 people (give or take) in our home 40+ hours a week. While I am grateful that we live in a place with such great resources, this way of life is not easy. It means never being alone, always having an audience while you eat, clean, parent, live. It means 10-15 hours per week of parent training and meetings. It means playdates where you have to play in a limited space so as not to disturb "teaching". It means having all of your toys taken apart and repurposed and often times missing or misplaced. It means extra coats, extra shoes, extra coffee cups and a house that can never be as clean as I want it to be. It means never having a weekend off and always opening our door at 8 a.m. ready to start the day. And it's something you have to experience to understand which can feel very isolating.
5) Communication. I remember sitting in an ECFE class when B was not yet 2 and expressing concern about him being a "late talker". And I remember saying that we felt like we didn't really know him without it. And I still feel this way today. I know B, better than anyone really, but I don't really know him. I know who he is in spite of his Autism. I know what he seems to like to do and what makes him seem happiest but I don't truly know him. I have never been able to ask him a question. He has never told me anything other than a simple 2 word request. He has never called out to me or showed me something of interest. As grateful as I am to get to experience being a parent to a "typical" child, it makes it so much clearer what we are missing. Every single word B. has ever spoken has been hard work. I remember the magic in watching my older son learn to talk, how cute his early speech was and how fast his vocabulary evolved. With B, language development & communication has only been work, confusion, frustration and despair. You don't realize how important this is until you don't have it.
6) Uncertainty about his future. This is the biggie. All of this would be a lot easier to handle if we knew how it turned out. If we knew we were doing the right things, working toward the right goals, doing what's best for B. If we knew he was going to be okay. Of course we don't know the future for any kid but we do know that they will grow up and be independent some day, however that may look. With B, we don't have that same certainty. It's terrifying and I can only allow myself to think about it once in a great while or it is just too much.

I'm not looking for a pity party. I know that you don't ever have to look very far to find someone who has it far, far worse. This is just how I feel lately and it has kept me from wanting to blog and share our day to day experiences. I'm burned out. I'm sure B. is too. It is painfully hard work.

Food Glorious Food

Here is a looooong overdue update... have 3 months really gone by since I last posted??

Good things are happening in the food department. It's not a fast or easy process but I am so proud of how far B-man has come and so hopeful for where he's headed.

There was a time when just one bite of something he didn't like would cause him to reject the entire meal. A time when he went for an entire day without eating because we told him he had to have 1 bite of a chicken nugget first. His Mac & Cheese could only be a particular brand. His food had to be cut up and presented in the same way every time or he freaked out and/or refused to eat it.

I won't go into all of the details because it is tedious to say the least. Honestly, I burned out on it before B. ever seemed to. For over 3 months, we have been writing down every single thing he eats and strategically planning every single meal and snack. And he has gotten very little food for "free" without having to try something else first.

We're not quite to what I'd consider "healthy" eating but he is eating a HUGE variety by comparison. And most importantly, he is willing to try practically everything. One of our therapists has taken a particular interest in this program and tries new things every time he works with him... crazy things like tacos, spinach muffins, edamame, dried mango, sunflower seeds. And B. is trying them! Some (oddly enough the spinach muffin) have even become preferred foods. Today, he ate 1/2 of a peanut butter and jelly sandwich for lunch and spinach quiche for dinner. I can't express how extreme of a change this is!

We still have a ways to go but these are great strides and I feel like we'll get there. B LOVES to eat and this opens up a whole new world for him.

What other people think

Yesterday, I took the boys to see a movie. This sounds like such a simple, menial thing but when one of your kids has Autism, trust me, it's not. I didn't intend to go it alone. We were going to go as a foursome for a change. But then big brother said he didn't want to see it so it was going to be a date for just me and B which seemed manageable. I was looking at it as a test. We'd see how it went and leave if it wasn't working. After all, it'd been over a year and a half since he'd been to a theater. When we did go to the theater, almost without exception, he'd fall asleep part way through. It might be some sort of response to all of the stimuli. He also used to fall asleep at "school" when he was little. But now he is much too big so there would be no lap sleeping. And also, B. has been totally conditioned to watching just parts of movies. They use them as reinforcement in therapy so he never gets to sit all the way through. He works for a few minutes, watches a few minutes and so on. You can see how this might backfire.

So, as we were packing up to go, big brother had a change of heart and suddenly really, really wanted to see this movie. And Daddy was no longer available to go. I had a big talk with him and told him that we'd have to leave if it didn't work for B. and not to be upset etc. etc. To be honest, I really was trying to talk him out of it. I was pretty confident that a) we would not make it through the whole movie and b) his brother would embarrass the you-know-what out of him and c) I wasn't sure I could handle both of them.

But he wanted to go and it didn't seem fair not to take him so off we went. Well first, I had to pack an entire backpack of "supplies":
-popcorn containers because I knew B. wouldn't be able to share from the same bag and likely wouldn't touch the popcorn at all if it wasn't in his familiar popcorn container
-cups for water because B. does not know how to drink from a water bottle or straw
-a chewie that I HOPED would keep him quiet and busy for at least a little while
-sweatshirts for all in case it was chilly (which came in handy to prop up behind B's back)
-2 stuffed animals for him to play with
-3 packages of fruit snacks that are usually reserved for bribery (ahem - rewards)
-a last resort bag of toys that I thought he might play with if he got bored and ready to leave before the end of the movie

And the backpack was so I could be hands free to keep a firm grasp on each kid's hand. Of course, I didn't factor in the addition of popcorn and water which required both of my hands and a drag along effort on big brother's part.

The parking lot was packed when we got there. I could feel my anxiety rising. Fortunately, it was just the theater as a whole that was busy and our movie wasn't that bad.

I purposefully got us there about 2 minutes before start time so we wouldn't have lost precious attending time from B. before the movie even started. I didn't want to walk in the dark though so it had to be earlier than start time. And still it was FIFTEEN minutes before the actual movie started. I don't get this - kids do not need to see 15 minutes worth of commercials and previews and short films before the actual film you are there to see!

If I could have fed him popcorn for the entire time, we'd have been golden. He munched through 6 refills of his popcorn (probably half a medium sized bag) and was *almost* just like everyone else. The legroom was roomy enough that he could kick his feet and not hit the seat in front of him. So we were good. BUT... there was a family directly in front of us and behind us. As B's noises escalated and when he started quoting a line from the movie Bolt of all things (Bolt, really?), I decided we needed to be considerate and move. I had been eyeing the end of the row because it was completely empty all the way down and even part of the row above it. I whispered to my big kid that we needed to move down. This was a huge gamble. Moving might have made B. think it was time to leave or upset him. And it definitely could have upset big brother. But we did it and it was a saving grace.

From then on, when B. got louder and louder with uncontrollable bursts of laughing, singing, jumping, rocking etc. etc., I felt like we were far enough away from everyone and that the movie was loud enough that he wasn't disrupting anyone else's experience. And after all, it IS a kids movie so you have to expect a bit of noise.

I chose this movie (Monsters University) because B. LOVES Monsters, Inc. He can probably quote or act out the entire movie. Loves the characters, loves the music, loves it! So I figured that might buy me a little bit of his attention. And it might have... tough to say. He did well overall. We worked through all 3 packages of fruit snacks and he asked for more and searched my bag a couple of times. We used the chewie, we used the stuffed animals, he did sit on my lap for about a half an hour (I couldn't see but that's beside the point) and he stood for a little bit too. BUT he didn't try to leave. He was happy to be there. He didn't ruin it for his brother. I think he had fun.

It was a LONG movie for me. I think it was cute but honestly I was so focused on getting through it that I didn't take the whole thing in.

This is a very long winded way of describing what it takes to do the simplest things with a child like B. In a couple of weeks, I am FLYING with them ALONE so you can imagine the planning and preparation THAT will require. I'm officially insane.

It's sad that it takes this much effort to do things like other people. But aside from common courtesy (it really wouldn't have been fair to let B. make noise over the movie directly in another family's ear the whole time), I really was more focused on the experience for B. and his brother. I am learning to care a lot less what other people think. We have just as much right to be there and to get to enjoy the movie and if that enjoyment looks different for B., then that should be okay. He is teaching me that. It's a great lesson for both me and his big brother. I think parts of my life could have been a lot easier if I had learned sooner not to care about what other people thought. But I also want to be a people pleaser and that doesn't compute. I'm not there yet - I have a LOOOOONG way to go but I'm working on it. And B's going to give me lots and lots of practice.

Time to Testify

Tomorrow night, hubby and I get to go speak to the chamber of commerce and beg for funding to cover B's therapy. The insurance mandate passed (woo hoo!) but we are part of a loophole and our coverage is still in jeopardy. Can I tell you how much I do not want to do this? I'd rather do just about anything than speak in any type of a public setting. It's just too important not to. Here's my spiel:

My name is (me) and this is my husband. Our son B. was diagnosed with Autism when he was just 2 years old.

We have 2 boys who are 15 months apart. B is our youngest. He was and is the happiest kid you’ll ever meet. His laugh is infectious. But he is not like other kids. At the time of his diagnosis, we were told that he functioned at the level of a 3-6 month old – a full 2 years behind in development. He constantly jabbered but he had no functional language. Not only was he unable to express himself, but he seemed to have no understanding of anything we said to him. In the community, he would bolt with no regard for his safety. One of our most terrifying experiences was when he wandered off at an amusement park and was lost for what was only a few minutes but seemed like an eternity. We were very fortunate to find him nearby as he would not have known that he was lost, could not have asked for help and wouldn’t even respond to his name if called. It was terrifying to have such a vulnerable child and we feared for his future and the future of our family.

We were told by every medical professional we met that we needed to get him early intervention therapy as soon as possible and that it was the only proven therapy to address his needs.

And then we were told that this therapy was not covered by insurance, was very expensive and that we would have to jump through hoops to get it. In as expedited a manner as possible, we were able to get started in intensive ABA therapy. It took 8 months. And in that excruciating waiting period, we tried our only other alternative for treatment which was Special Ed services through the school district where his development stalled at best.

We are now in our third year of ABA and B is not the same kid.  Today, he is fully potty trained and able to perform the same self-care rituals as his older brother. His receptive language has grown leaps and bounds and he can understand and follow commands. His speech is still significantly delayed but he is able to communicate his wants and needs with simple requests and has shown tremendous potential for reading and typing. He has already exceeded his brother in learning sight words and we have great hope for how this can help him find his voice in the future.

We initially used TEFRA (Medical Aid) to help pay for this essential therapy. But when my husband became self-employed, our parental fee TRIPLED to a monthly payment that exceeded our mortgage. His income is variable and my full-time job is taking care of our kids so this is not a sustainable price for our family. I’m not sure that it’s attainable for any family.  We looked to MCHA and for 6 months, we paid the steep TEFRA fee and the MCHA premium AND the monthly premium for our private insurance plan for the other members of our family. After the 6-month waiting period, we were able to drop our TEFRA coverage but we still pay for MCHA and very pricey private insurance.

You can’t put a cost on this kind of benefit. Without it, our son’s future and our family’s future is grim. But we can only sacrifice so much and there comes a point when the money is simply not available. Without MCHA, we don’t have another viable option.

Unfortunately, the Affordable Care Act seemingly makes this coverage unnecessary since our child can no longer be denied insurance because of his diagnosis. We are told that MCHA is going away because we don’t need it anymore. This is simply not true. Insurance companies continue to deny coverage of the ABA treatment we depend on and at this point, the ACA does not cover intensive ABA. Therefore MCHA is still necessary until ObamaCare includes behavioral health treatment.   If MCHA goes away before families like us have other viable insurance, the consequences are very, very high. Without it, the state will have to use Medicaid to pay for this treatment which will cost taxpayers much more and will be unaffordable for many who desperately need it.

But it’s more than money – it’s the future for these kids and their families. And it’s even bigger than that. The state as a whole will be greatly impacted by every child who is denied the treatment that could enable them to become a contributing member of our community rather than a drain on our taxpaying dollars.

Please confirm MCHA’s commitment to cover ABA and other autism treatments until they are included in Minnesota’s ACA essential health benefits set.  The stakes are simply too high. Thank you for your time and attention.