Our Story: Part 1

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-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents be the best they can be for their kids. This is Part-1 of a series chronicling their story.

Her Story

Most of 2008 was just a blur. By the fall, my son Aidan was 21 months old, his older brother Bennett had just turned three and I was just ending my first trimester, pregnant, with our third. I was exhausted.

My favorite time of the day was nap time. I woke up every morning thinking, just make it to nap time. Around then, I started to notice changes in Aidan. The first was that he wouldn’t sleep.  He had been an easy sleeper up until then but something changed rapidly. It wasn’t that he didn’t want to sleep. It seemed like he couldn’t. He would stare at me as if trying to tell me something was wrong. His eyes said, I’m so tired momma but I can’t sleep. It broke my heart. I also noticed he was starting to grind his teeth. His acquired language was starting to slip and he had taken to grabbing my hand and pulling me or pointing to the things he wanted. He started calling his brother by his own name instead of the precious Bee Beet he had been calling him for months. He would only occasionally come when I called his name. I was starting to get concerned. But I was also exhausted.

I was on my third pregnancy in four years. We had moved cross country twice. I had recently lost my mother-in-law to ALS and my husband had been recalled into active duty in the Navy. We also found out he would be deploying to Iraq soon after the baby was born. It was a stressful time to say the least. So when the fears that something was wrong with my sweet boy would surface, I would quickly chalk them up to exhaustion or paranoia.

The spring of 2009 brought our third son. Did I mention I was tired? Aidan’s symptoms had become more pervasive. On Easter Sunday my sister asked me, with some concern, when Aidan had started walking on his toes. It had been about a month. By then his jaw clenching and other sensory issues seemed to be getting worse. Then I told my sister and my mom that I thought he was autistic. My mom looked at me like I was crazy. She told me, “don’t even say that”. I thought to myself, why because saying it will mean it is true? It was the first time I said the words out loud to anyone except my husband. Aidan was now 26 months old and I had silently known for months that there was something terribly wrong with him.

I kept checking the autism websites and watching the checklist of symptoms grow and grow. My husband would tell me I was crazy. He would go sit with Aidan and play with him. I would watch him engage with him. They would sit and sing and talk and play and then I would tell myself I really was crazy. But I knew. His speech growth was at a complete stand still. He would open his mouth to say words he used to say and he would look lost. It was like he was a stroke victim. The words just would not come. The darling little “excuse me” he used to say when leaving the table was now “snee snee” and bee beet, Aidan’s word for Bennett, was no longer being said at all. In desperation I would tell him a million times a day I love you, just to hear him say the one phrase he seemed to be able to still manage with ease. He looked lost and confused. He looked scared and there was little I could do to help him make sense of his world.

In the late summer of 2009 my husband left for a six-month deployment to Iraq. I was exhausted and terrified that I would not be able to handle my new reality. I was feeling so guilty that I had still not made the time to get Aidan properly diagnosed. Five precious months had gone by since I first said the words autism out loud. Five months of watching him regress daily. Five months of arguing with my husband that something was wrong. Five months of no early intervention. Those five months are still a source of great guilt for me. I will never get them back.

His Story

Even now, seven years later, I remember the overwhelming feeling of accomplishment I had on the way home from the hospital with my third boy Sean Ryan-called Ryan. We had been pretty busy. He was our third in a little over three years. All three pregnancies had gone pretty smoothly. Annette was a champ through it all. As I drove the minivan out of the parking garage at the Balboa Naval Hospital, I took inventory of it all. We had three healthy boys, a roof over our head and I had a job that provided for us. We’d been through some really rough times, but most of that was behind us now. We’d made it. My family of five was ready to thrive.

It wasn’t easy to get there though. Five years earlier, I had transitioned out of the Navy after back to back deployments in Operation Enduring Freedom. I had a really hard time with the change. My mother had been diagnosed with ALS so we moved back to the east coast to care for her. She died a few months after we got there so we moved back to California less than 18 months after we left. I struggled to transition into a new career when we returned. I was horribly unhappy in my work. Whatever I did felt petty compared to the life in service in a time of war. I was detached. I had been in the Navy my entire adult life. Now I was lost.

With our first two kids, I had a really hard time adapting to parenthood. I had no patience. I was under so much stress trying to balance starting a new career and trying to keep my extended family together while my mom withered away. It felt like I was angry all the time. Bennett, my oldest was a mess. He wasn’t hitting any of his milestones and he was almost impossible to handle. It felt like all I did was yell at him. But then, not too long after Aidan, our second was born, he started to come around. He started talking and then he didn’t shut up.

I have to admit, when I got called back into the Navy just before Aidan’s first birthday, I was relieved. The boys were doing great, work was going to be stable again and things all felt like they were starting to come together. When we found out we were pregnant with Ryan, even though we didn’t plan it, I was excited. So when the pregnancy went without a hitch and he was a healthy fat blonde baby, all seemed right with the world. Which brought me to that memorable minivan ride as a first time family of five.

I found out shortly after that I was going to have to deploy to Iraq that summer. I knew I would eventually have to go and that it would be tough for Annette with a four-year old, a two-year old and a six-month old, but I also knew it was time for me to get back into the fight. I hadn’t felt whole for a long time. I was back where I belonged. And I was ready to get through another tough trip out to the sand box.

Before I left, Annette told me that she was starting to worry about Aidan. He wasn’t really talking any more than he had been for a few months. I noticed that he stopped running over to me to greet me at the door when I got home from work. She was worried something was wrong. But she was always worried something was wrong. She spent years being worried about Bennett, and he was turning out fine. It always bugged me how much she seemed to blow that kind of stuff out of proportion. Every headache was a sinus infection. Every bruise was a broken bone. And now around every corner, our kids were messed up in some way. Things were getting better and we just needed to get used to things being ok again.

Leaving them on the tarmac in San Diego to head off to Iraq was one of the hardest things I’d ever done. It broke my heart. I’d never deployedscreen-shot-2016-09-27-at-9-11-54-pm with kids. And I didn’t know how to shut off the sadness. All I could do was go numb. My friend Dan, who had left on the first flight a few days earlier had gotten his legs blown off that morning. They let us know in the ready-room for the flight. I couldn’t tell Annette. It just would have worried her. The last thing I remember was that Aidan kept trying to run away from us, out to the flight line where the planes were landing. He wouldn’t stop until we closed the door to the plane and rolled off. It was a tough day.

Part 2–>

What I found along the way.

Today is my son’s 10th birthday. And this is my gift to him: A message to the universe about why it’s better for having him in it. And not by a little.

Seven years one month and 19 days ago, my son Aidan, my second of three boys, was diagnosed with autism. I got the news from my wife by phone while I sat in one of Saddam Hussein’s abandoned guard houses on the banks of the Euphrates River in Iraq. If you follow any of my writing, that’s an old story. But it’s worth saying out loud from time to time. Because it’s important to stop, take a breath and turn around to look at the footprints behind you and remember just what you’ve walked over and through to get where you are.

People don’t ask me what it’s like to have a child on the autism spectrum. Just like people rarely ask someone what it’s like to have lost a child. It sounds like a bit of an extreme comparison to some of you I’m sure. But if I showed you a video of Aidan at two, talking, smiling,interacting, and then I showed you him at three, you would understand. Because he was gone. Most of the last seven years have been a journey to find him again. I wish we could tell you that we found that little talkative, smiley two year old. We haven’t. He’s not gone any more. But he’s different. We’ve long since come to terms with it. While we were looking though, I found a few things along the way. And I think they’re worth sharing. So here they are. I hope they help.

My job.

Something happens when you realize that the burden of resources that your family requires to get through the day increases near exponentially overnight. It makes you look at your career differently. Do what you love and you’ll never work a day in your life. Find something you’d do for free and find a way to do it. That’s the type of sage career advice you find out there in TED talks and on Linked In. Here’s what I use to guide me now. Do what your family needs you to do to support them. Nothing else matters. And once you get there, you’ll find how much of the job dissatisfaction crap that we’re fed today is an unnecessary luxury that gets in the way of doing what you agreed to do when you decided to be an adult and support others. It’s an unconquerable realization.

My Marriage.

Every once in a while, I’ll run into someone from the old days that I served with. Someone I’d been through hell and back with and lived to laugh about it over beers. No matter where I am, it always brings me a unique kind of affection. Simply seeing them puts a smile on my face that can only be explained by the fondness that replaced the fear and dread we both once lived through together. I’m married to that now. I’ve always loved my wife. That’s why I married her. But we’ve been to war together now. And back. And what comes with that is a deep friendship and loyalty that wasn’t always there. Raising a child with autism will be the violent reaction that blows you apart or binds you together at a molecular level. We found the latter. And no one can or ever will come between that.

My faith.

Two thousand years ago a man taught the world a way to live. He taught that there was more to us than this life. And he taught that love and generosity towards every and all was required. And he taught that being grateful for all of it was the only way. And every day of my life and what it takes to get through it is testament to the truth and power in his words. And to me, they are proof that there is a God. And that he loves me very much.

My purpose.

Once you stabilize the ship in the storm, it’s time to get the engines back up and go searching for others in need. I was never a cruel or unkind person. And I wasn’t particularly self serving. But I never once felt the burning need to help others until I felt what it was like to hit the bottom, bounce off it and start to climb out. If you’re reading this and you need help, go ahead and ask. This entire site is for you.

My son.

We never found that two year old we were looking for. Because the truth was, in hind sight, he was never really there. But who was, and who is, is a wonderful, loving, smart little boy full of life and effort. He tries harder to overcome worse problems by 9AM every day than most of us will ever face in a lifetime. And every morning, when I hear his little sing song happy noises from his room, and I know he’s up and ready to get after it again, I know that I’ve found him, my son, Aidan.

Today, he’s 10.

 

What’s Wrong With Your Good Kid?

I hated school. Actually, that’s not entirely true. I liked being with my friends and playing on the basketball team and being in the band and recess and talking to girls. I liked learning too. I liked learning just about anything. Math, reading history and science-especially science. I liked all of it. I just hated class.

From about the time that I was ten to the time I reached high school, the most common thing that happened to me in a classroom was that I was thrown out of it. It happened at least once a day. There were days when I was thrown out of every class that I was in. That’s not easy to do. I was told to wait outside in the hall until class was over or sent to the principal’s office. I had my own desk there. I never got a detention. I was never suspended. I never got in a fight. And I never picked on or bullied anyone. Even my teachers, the ones that threw me out of class everyday would have admitted, I was a pretty good kid. So what was the problem?

Me in a classroom was the problem. I never shut up. And I could never keep still. And I was a nightmare for every teacher I ever had who tried to get through a lesson with a couple dozen other kids to tend to. I drove them crazy. I called out. I cracked jokes, usually on the subject. I talked to the people around me. It never stopped. If you ever taught me, and if you’re still with us and if I didn’t send you to an early grave, I’m sorry.

Things eventually turned out OK for me. But not until I pretty much quit on school.

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That’s my high school freshmen year report card. Notice the hand written notes from my mother, God bless her. Mostly F’s,  a few C’s. Because after years of getting thrown out of class, I just stopped going. Which is why I’m writing this now. Because there’s no reason it has to end the way it did for me. But you also need to know, that even if it does and even if your kid is as big a nightmare as I was in the classroom, it’s probably going to be OK. But there’s a few things you need to know that can help.

There actually is something wrong with your kid.

I know that’s a taboo thing to say these days. But there’s something wrong with everyone’s kids. It’s just that the something wrong with your kid, the same thing that was wrong with me, makes classrooms and then school a disaster. If you’re interested in helping though, it’s an important thing to come to terms with. It doesn’t mean he or she is a bad kid. Or that you’re a bad parent. Or that they’ll be labeled for life with a stigma. It just means there’s a cause here. And causes are good. Because you can usually do something about them. Chances are, if your kid is like I was, he or she  has some function of neurological developmental disorder, likely Attention Deficit Hyper Activity Disorder or ADHD.  ADHD is not an excuse or something people these days say because we are allergic to discipline. It’s a real live disorder that’s always been around. And it makes it really hard for your kid to handle the classroom environment.

Just like any other part of the body, the brain develops as your kids grow up. In kids with ADHD, the parts that manage impulse control, focus and executive planning are underdeveloped. The good news is, eventually they get somewhat or completely better just by growing up a bit. The bad news is that pretty much no matter what you do, your kids often literally can’t control themselves. Which makes it near impossible to exist in class. And maddening to be their teacher.

There are tons of treatments and therapies and even medications that can help. There’s lots of options. But it starts with coming to terms with what’s going on with your child. It’s not going away. And “getting tough” alone won’t cut it.

The classroom is a miserable place

If I jumped into my time machine and traveled back a hundred and fifty years, grabbed someone off the street and jumped back to today, there’s not much that person would recognize about the world we live in. Cars, plains, electricity, internet…radio. Everything is different. The one thing that would make sense to them, would be the classroom. Because it really hasn’t changed that much. There’s a teacher and a lot of people sitting there watching them talk or point to things. It’s a lousy way to spend your day, especially if you’re a ten year old boy. And if you’re a ten year old boy whose brain is developing differently than others, its a miserable experience. I’m 40, and the times when I’ve had to jump back into learning environments like that for training at work or other projects, I’ve wanted to stab myself in the eye with my number two pencil. We’re overdue for massive changes in the modern classroom. But that revolution probably isn’t going to help your kid. Because it’s not getting here fast enough. So, try this instead:

Talk to your child’s teacher, and see how you might be able to adapt the classroom to help. If he has a diagnosis related to his issues, use an Individual Education Plan (IEP) to ensure that it’s formalized and constant. For me, either sitting in the very front of the classroom or very far in the back was actually effective. Simple geography took away most of the temptation to act because my issue was my inability not to engage those around me in conversations. If your kid can’t sit still, maybe he doesn’t need to during lectures. Maybe she can stand or pace in the back. There’s lots to do in that space that can help. There’s lots of new project based schools that are starting to spring up too. See what you can do to break the cycle of acting out, punishment, diminished learning and then acting out. Because if you don’t, the teacher can’t teach, and your kid can’t learn. It’s a partnership with the teacher, who hopefully by 2016 gets it that is the key to adapting to the classroom.

Punishment isn’t going to work.

The science behind punishment is pretty clear. In order to punish your kids out of impulsive behaviors, you have to punish them so severely, you create trauma. And unless you’re interested in sending your kids to rehab before they get their drivers license, you don’t want to mix impulse control issues with childhood trauma. It’s not pretty. All that throwing me out of class ever did was make me feel like a misfit. And it never stopped me. And at the end of the year when everyone went on a class trip, and I wasn’t allowed to go because of my poor conduct grades, I was left behind with a handful of kids who felt the same way. That group of a half a dozen kids included me, someone who is now a convicted serial murder and another kid who eventually killed himself in a hostage standoff with police. I’m not saying things would have turned out better if we got to go on the trip. But holding them out of it clearly wasn’t the “tough lesson” they needed to straighten themselves out. As for me, I felt like I was a bad kid for a long time. And it never made me better. So just skip it.

Stop telling your kid and yourself that they’re just too smart for the material.

I was told over and over again that I was too smart and that the curriculum just wasn’t challenging enough. If only there were a way to make it more challenging, I would be forced to pay attention and would therefore behave. They’d point to my test scores as proof. And both myself and my mom would feel better, no longer burdened with the accountability of my actions. It seemed like a fair explanation. But it was nonsense. There were scary smart kids in my class who played a half a dozen instruments, spoke French and could do sixth grade math when they were in preschool. And none of them were getting thrown out of class because they couldn’t behave. Because none of them had the problem I had.

Do keep your kid engaged at school

This is probably the only part that matters. It matters more than keeping up skills at grade level. It matters more than their “citizenship” grades. And it matters more than their test scores. You really don’t get anything for winning 7th grade. The world doesn’t care what your fifth grade report card was. None of it matters. What matters is that when you get to high school, that you wake up in the morning and you don’t look at the day ahead of you with a sense of horror and dread because school has been a miserable experience for you. That’s where 15 year old me was. But a change of environment and some mentoring fixed it pretty quickly, because I didn’t hate school. I just hated the classroom.But I stayed engaged outside the classroom and when I got in the right environment, it was a quick turnaround. The classroom was always going to be hard for me. It was all the way through grad school. But school wasn’t. I went to dances and played in the band and played sports and participated in the gifted and talented program. And all of that eventually saved me. Put your parenting energy there. And do what you can to manage the rest.

There are actually good things about how your kid is different.

I have more ideas than any two people I know-more good ideas, more bad ideas, more average ideas. It never stops. It’s a constant flow. And as I got older, it got easier to focus that mental energy. Part of it was because, just like my body,  my brain filled out. The other part was because I’ve learned tools to help like meditation and mindfulness. But that focus just sits on top of a basic mental energy that is really powerful in many environments but disastrous in a classroom. When I worked in the Navy’s branch of the Special Forces, I was surrounded by crazy ADHD adults, moving at a million miles a minute, full of creativity and energy, capable of intense situational focus. Now, I run a team at a world class software company and write a blog that over a million people read last year. At work, I’m surrounded by weirdos that exist on a different mental plane than anyone I know. None of them could sit in a classroom for five minutes. And they make amazing things and more money than you can imagine. Because there’s value in the dynamic mind. I don’t know how any of them were in fourth grade. I don’t even know where most of them went to college-if they went at all.

Here’s the truth. Your kids are going to live most of their lives outside of school and outside of your direct protection. We tend to evaluate our whole parental experience on how they work in the classroom. It’s not fair to them. And it’s not fair to us. So take a deep breath, work with your kid’s teacher and keep them engaged and feeling as good about their experience as they can. Because it matters a whole lot more that you don’t get it wrong than it does that you get it exactly right.

Liking school is more important than being good at it. And it’s not close.

Adaptable Me

You’ve heard it before. From the mother with older children or the grandparent waxing reminiscent about her parenting years. They see you with your handful of young kids and tell you, “Cherish this! It will be gone before you know it.”  Or, “wait til they’re in high school…then it gets really hard.”

There’s something to it. Each phase of parenting has its ups and downs. And we tend to remember the ups of the past fondly-especially if we’re smack in the middle of one of the downs in whatever season of the journey we’re in. But the progression in parenting seasons is an evolution thousands of years in the making. We start off with the vigilance of safety. They can’t protect themselves from anything, not even themselves, so that’s where our energy goes. Then it shifts to behavioral vigilance. They’re relatively safe in their world, but they need to understand how to behave in it. So we spend our time there. Once they’ve figured that out, our parenting shifts to intellectual vigilance-how to do what’s right and use good judgement.

Each phase is a monumental task that takes very different tolls on the family. Safety vigilance is physically exhausting. Behavioral vigilance is maddening. Intellectual vigilance is, well, it’s just hard.  The good news is there’s a progression that lasts about as long as it needs to and then you’re free. The drum beat of development goes on and right about the time that you can’t take any more of one part, it starts to wane.

Unless you’re a special needs parent.

For us, the progression doesn’t really work the same way. We can be perpetually stuck in safety vigilance. Or we can be stuck in all three at once. Our children can be intellectually capable, yet physically incapable-or vice versa. Sometimes they can do everything, except behave themselves. The hardest part, is there’s no road map. We don’t have an expiration on things the way other parents do. When will they be potty trained? Sometime. Maybe never. When can we leave them home for a weekend while we jet set to Europe-or for ten minutes while we walk the dog-we don’t know. We’re feeling around in the dark for the keys that open up the door to the next phase. And sometimes we never find them.

Which is why when something does actually progress, we become deeply attached to that progression. Long ago we likely surrendered to the reality we might never get there-potty trained, sleeping through the night, left with a “normal sitter”-so when they do, it’s such a triumph, it defines part of our happiness. Which is awesome.

Until they backslide.

It happens. Something that you thought you’d killed off long ago, that you’ve looked back with horror on since, comes back-remember when he wouldn’t go bed unless I laid with him for two hours or when we couldn’t leave the house until he went potty? For us it was sleep. Getting our boy to sleep was killing us. My wife or I had to lay for hours after we got the other kids to bed. It was exhausting- and killing parts of our marriage. Until one day, it stopped.

A few weeks ago we changed some dietary supplements that our doctor recommended. And our sleep nightmare returned. We were back in bed with him until the wee hours of the morning for about two weeks. In the past, a relapse like this would have had a terribly unhealthy impact on me. I would have had this crushing feeling that we were back at square one-and that this was our new permanent reality-crushed.

I’ve learned two things that have helped me through these backslides that I’ll share.

  1. This probably isn’t permanent. It might be, but it probably isn’t. Just like progress isn’t always permanent, regression isn’t either. In fact, regression, in my experience has usually been temporary. It will probably pass.
  2. If it doesn’t, we can adapt and overcome.

My house is full of special needs hacks. I’ve got low cost cameras, special locks, weird climbing structures and a homemade ball pit. All of these things were adaptations. We humans are poorly equipped to survive in this world on our physical attributes alone.  We have no claws or sharp teeth. We’re slow and weak. But we put a man on the moon before we had color TV, because when we have to we figure out a way. Don’t forget that. No matter what your kid throws at you, you can get it to some level of normal by adapting.

Keep that helpful thought in your head as you slog through whatever ridiculous problem your wading through now. It will save you.

Where’s Aidan?

“Where’s Aidan?” It’s a question that gets asked out loud or in my head hundreds of times every day in my house. Aidan is my nine year old, highly energetic, happy, beautiful son. He’s also my minimally verbal, constant flight risk, moderate to severely autistic son. And not knowing where he is for too long usually doesn’t end well. Seven years into this journey, my family looks very different than I would have expected when we started this whole thing.

According to data from 2012, the CDC tells us that one out of every 68 children born today is diagnosed with autism spectrum disorder. More boys than girls-four and a half times more to be exact. One out of every 41 children born in New Jersey, where Aidan was born, are diagnosed. Those are concerning numbers for prospective parents, even more for those who have kids and are starting to get that dark, alone feeling that their kids are different. Dark and alone are important words when it comes to Autism-it’s where we all start, and some of us stay.

Most of the energy around the autism discussion is around finding “the cause” or “the cure”. And that’s good energy because if we can spare people the outcomes of autism, we should. My boy is not perfect in every way. I’ve been up since 3AM, because that’s when he got up. You can’t get someone back to bed when they don’t understand time or are episodically detached from the fact that they are going to get in trouble if they don’t. And you can’t go back to sleep because he’s smart enough to go get dressed and take a walk, to Mexico if you let him. I love him unconditionally, but I would fix him in a second if I could. So finding causes or cures are important. Except that it’s probably not a cause, or a cure.

If you spend enough time around the autism community you start to realize that it’s not one problem. There’s all kinds, with all kinds of causes, and all kinds of treatments. So the angry vaccine debates and the frustrated food additive advocates can rage on. That energy will ultimately lead to something good. But it’s actually not why I’m writing this, sitting on my son’s floor, now just before 5AM, as he rewinds the same part of The Land Before Time over and over again to watch it, giggling with delight. I’m writing it because it’s Autism Awareness Day. And I’d like to offer a call to action, not for a cause, not for the kids. I’m offering a selfish call for help to the selfless-the parents of autistic children.

Seven years ago this fall, I was deployed to Iraq when my wife sent me an email telling me to call her. I had been gone three months. She usually didn’t do that so I knew something was wrong. I got to the nearest phone and when she picked up I could tell she’d been crying. She told me she had taken Aidan in for an assessment, and the doctor told her, with cold certainty that he was autistic. The lights went out in the building I was in with the word still hanging in the air. Our generator had died. Talk about timing. I ran to another part of the camp where I knew I could find a phone. We talked for a bit, she gave me the details, about how he had stopped talking shortly after I left about how she knew something was wrong before but I wouldn’t listen. I hung up and hurried out of the building as quickly as I could. I had to get back to where the lights were out quickly before I lost it. When I did, the flood gates opened. As I walked back to our side of the camp, I mourned the life that I just lost along the banks of the Euphrates, where men had carried dark, lonely thoughts for millennia.

A mentor of mine once told me that the richest parts of our life are the walks back to the path we were on when something knocks us off it. And he was right because the walk back for me and my family has been a rich one. But it’s also been a long one with lot’s of tail winds. My wife and I have a strong relationship, but the diagnosis and my response to it almost drove our marriage off a cliff. When autism families are open and honest, most will tell you some version of the same thing. We have three graduate degrees between us and an income that allows us to live in a gated community. We can close the resource gap for things like house cleaning laundry, yard work and specialized childcare through money. We have a great school system in our neighborhood and a strong church with a special needs community walking distance from our house. And here’s the message I want you walk away with. We have just about every advantage you could think of as a family with an autistic child. And we barely get by. I have no idea how in the world a family with any less resources than us has any chance at all. Yet somehow, they find a way, sometimes. But sometimes they don’t.

So here’s my call to action. Someone somewhere in your life is struggling with some function of this journey. I promise you. If you don’t know anyone, then you’re not paying attention. So that’s my first ask. Pay attention and keep an eye out for someone somewhere who may be in need. Here’s my second ask. Help them.

What does help look like? It’s not much. Ask them how they’re doing. And listen. If you want to get your family’s together, offer to do at their place, it’s easier. And show up on time to things. We have windows for recreation that open and close on their own. Teach your kids how to engage with theirs so that one day they might be able to help care for them, give them a break once in a while. Remember, we’re likely going to be parenting for 50 or 60 years and leaving our kids to someone else after we die. That mountain is best climbed with others.

If you’re a grandparent or an aunt or an uncle, don’t tell them that they’re over reacting and that things will just be fine. They might be-but probably not. They’re not looking for a life’s lesson or hard love. They’re about to get a lifetime of both. And the things parents and siblings of autistic parents say in the minutes hours and days after a diagnosis can be either a great source of strength, or pain for years to come. If you’re a husband and your wife is telling you something is wrong and she wants to get your child tested, listen to her. And support her. I didn’t and the fact that I left her to do it alone, is a regret I’m not putting down any time soon. The great thing about helping autism parents is it really looks a lot like being supportive, and available and loving. And that’s not hard.

What better day to start than Autism Awareness Day…or Saturday…as we call it in our house.