I Get Lonely – by an Autism Mom.

I am not sure about you, but I get lonely. It’s not easy to admit, but it’s true. It’s hard not to get lonely when the normalcy of the world seems to flow around you. Now don’t get me wrong: I love my family and I love my life. I have the two most amazing sons in the world who live daily with challenges due to autism. I wouldn’t trade them for the world. However, due to their special needs, our life has had to change dramatically and, truth be told, it’s not an easy life.

The life that once was does not exist anymore because of autism. I don’t necessarily need to get into every detail of how our life has changed. If you are raising a child with autism, you already know. You know that going out to eat is impossible. You know all about being a prisoner in your home—the sleepless nights, the meltdowns, the judgments that come your way, and so forth.

As parents of children with autism we adapt to our “new normal” and live our life the best that we can. As I like to say, “It is what it is.” You adjust; move forward while helping your children fight their daily battles. However, even if we don’t like to admit it, we get lonely in our new normal.

Before you know it, it has been months—if not years—since you sat down and ate in a restaurant. You may not even remember when was the last time that you went out with your friends and laughed so hard that you peed your pants. Better yet, when was the last time that you’ve even seen your friends? When was the last time you were able to talk to a friend on the phone? The list goes on and on. The point is, if you’re like me, your life took a totally different direction when autism entered it and you have never been able to look back.

Even though you love your children and love advocating and fighting for them, your journey may get lonely. You may not feel lonely all the time, but you are lonely. The loneliness can come out of nowhere. You may happen to look out your front window on a Saturday night and see your neighbors pile into their van and head out as a family to take part in what appears to be a fun, family function. The loneliness may come when you log onto Facebook at 2:00 a.m. because your son isn’t sleeping. As you log on you see nothing but pictures of the life that was supposed to be yours, the “normal” life. The loneliness comes and goes and you just never know when it’ll hit you.

Two Brothers One JourneyAt times you feel so separated from the world that you’re not so sure you fit in anymore. Autism has made you grow and change in so many different ways. Even when you’re surrounded by loved ones, you still feel lonely. The conversations that surround you are full of regular school, t-ball, sports, and the newest entertainment shows that are rocking the world and, before you realize it, you’re lonely. You have no clue what they are talking about because your days are full of therapy, special education, Baby Einstein, potty training for the sixth month in a row, and all the other latest scientific research that’s proving to be a hit in the autism world.

So what do you do? You hide that loneliness.

Even though we are lonely, we learn how to hide it quite well. We fight through it and move on with the world as it moves on. Sure, there will always be times when it is hard, but we adapt. We hide our loneliness behind our smiles and embrace each day for what it is. After all, not everyone can raise a child with autism. Not everyone gets the chance to raise an angel in disguise. We may be lonely but we have our children and we have each other. I am not sure I could get through this journey without knowing that there are other parents of kids on the spectrum that are fighting the same fight as I am.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

One Little Boy and His Three Superhero Pets!

Super PowersAs a child growing up back in the day, I took for granted the fact that I always had lots of pets around the house. We always had a family dog and I had my own rabbit that was my responsibility to care for. Now I am older I realize how lucky I was back then, and actually how much my pets helped me learn about life.  A love for animals is something that I have always carried with me, and when we had kids it was really a no-brainer that we too would have a house full of animals like I did when I was little.

So we have a bit of a madhouse really now. There’s the three kids, two dogs, a goldfish, two chickens, oh and my son has his very own pet tortoise!

Like I said, we were always gonna have a house full of pets, but what we have found over the last few years is how incredible our little furry friends really are. You see, my son has Autism and struggles with relationships, and can often prefer to be by himself most of the time.  But the relationships he has with his pets are simply incredible. He seems to bond with animals on a whole other kind of instinctive level.

They are like little ‘Superheroes’ opening up the world to him with no words required.

Let me explain…..

Meet Charlie

Charlie

Charlie is our old faithful family dog. My son has grown up with him, side by side, together all the time. Every day when my little man comes home from school and dumps his school bags on the floor, he knows that Charlie will always be there waiting for him. No matter what has happened that day in school. No matter how he’s feeling, or what he has done that day. And without fail, every morning Charlie makes his way to my son’s bedroom and plonks himself next to his chair.  My son is always anxious about going to school. And it’s almost like Charlie is there to reassure him just by being there with him.  Like he’s saying, “It’s ok, bud….I’m here for you.”

Charlie teaches my son about love, friendship and trust. Those are Charlie’s superpowers!

Now meet Betsy

Betsy

Betsy is the latest edition to the madhouse and, as you can see from the picture, she is a mischievous puppy! She loves nothing more than to play ‘tug of war’ with my son on the floor, and my heart could melt when he rolls around with her laughing and barking as he pretends to be a dog. Sometimes she’s a bit, well, ’naughty’, but we always forgive her because we love her so much (she’s partial to a smelly old slipper or two). And sometimes she does things she’s not really meant to but it’s our job as her family to teach her the right things to do (like not doing your business on the bedroom landing!!) But we don’t shout at her because it’s not her fault; she doesn’t understand the rules of our world yet. My son is absorbing all this subconsciously. Betsy makes mistakes, but it’s OK. Sometimes Betsy does things without thinking, but no matter what happens we’re all family, and we’re here for each other. We try not to get cross.

She is also a little bit anxious about going to new places like the vet and the park. But my son takes control and scoops her up, saying “C’mon Betsy, it will be fun.” He is learning through her that new things can be OK.

For such a little puppy, her superpowers are pretty big!

And finally, let me introduce you to Turbo-teddy (He has ‘moves like Jagger’, this tortoise. Trust me: He’s fast on his feet!)

Teddy

Teddy is my son’s very own special pet. He’s a bit different from the rest of the pets we have because he’s not at all cuddly like the dogs. And he doesn’t really like to be fussed over too much. But he’s really special in other ways. My son loves to care for him. He bathes and feeds him every day, and talks to him with such love and care when he handles him. Teddy is teaching my son to think about someone else. He has his own unique Tortoise needs, and it’s important that we care for him properly, or he will become sad and unhappy.

What incredible superpowers: to teach someone how to care for others, to think about someone else first over and above what you want. That’s what Teddy is helping my son to do.

So, you see, something magical happens when my son interacts with animals, and I intend to do everything I can to nurture that. I can only imagine what a chaotic and confusing world my son experiences every day and our pet animals help him understand and process that whole heap of craziness.

Children like my son have a lot to teach the world. He shows us that growing and learning doesn’t all come from textbooks and classrooms. It can come from the most ordinary and unlikely of places; like family pets, chewed up slippers, or trips to the vet.

My son is amazing because he can turn the mundane into something wonderful and magical that we could all learn from!

Now that’s a superpower if ever I saw one.

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Read more from Ms. M. by visiting her blog http://asliceofautism.blogspot.com/ or like her Facebook page https://www.facebook.com/sliceofautism today.

Autism Daddy is Out.

Autism DaddyAnyone familiar with Autism has likely heard of Autism Daddy. However, up until today very few people know who was behind this great blog.

Launched in 2011, Autism Daddy quickly rose to the top of reading lists in the autism community from Autism Daddy’s humor, honesty and family perspective.

The boy (commonly referred to as The King) and his Mom (Wifey) and his Dad (Autism Daddy) have added so much joy and knowledge to the community.

Only 4 years in, the blog has amassed over 4 Million views, 120,000 Facebook Followers and who knows how many laughs, smiles and tears around the world.

This week marks a new day however. Autism Daddy outed himself on Monday as a 21-year employee of Sesame Street to help promote Sesame Streets’ new autism initiative SesameStreet.org/autism

You can read more about the man behind it all here.

And in case you are wondering about the people in his journey. According to Frank’s website:

“Wifey will still be wifey… The king will still be the king or his majesty.  You still probably won’t see their faces. And I’ll still be Autism Daddy or AD even though now you know that I’m Frank who works at Sesame Street.”

Kudos to you Frank. You continue to make the world a better place every day.

What Happens to My Children When I Am Gone?

Not a day goes by that I don’t think, “What is going to happen to Trenton when I am gone?” It is a thought that no parent should ever have to think about. Truth be told, if my child did not have autism or any disability, I would not even be thinking about this. However, that question haunts me daily.

Oh sure, there are days that I don’t worry about it as much. Then there are the days where it gets the best of me. It is my greatest worry and fear. Who will take care of my precious child when I am 6 feet under?  Will he be cared for and loved? Will they make sure he is bathed and fed?  Will he be happy? Will he know and understand that I just didn’t up and leave because I wanted to? Will he understand death and know that it is a part of life?

It would be different if I had a neurotypical child.  I would not think about that dreadful thought as much. However, for the families much like mine, who have all of their children on the spectrum, we worry about this to a very high degree.

Two Brothers One JourneyI tell myself to let go and let God handle it all but that is hard. It is much easier said than done!

No parent wants to close their eyes in death knowing that they are leaving a child in a residential home to be cared for by others. I have heard many comments in my life how there are great workers in the many residential homes. It doesn’t matter how nice the residential home may be or how nice the workers may be, no one can take better care of a person than their mother or family member.

I want to die knowing my child is married and raising a family of his own. I want to know on the day of my death that my child can take care of not only himself, but his family too. Sadly, families raising children with autism very rarely get the reassurance that their child is going to be just fine in life when they are gone.

We often hear how mothers worry about their children even when they are grown. I never understood that until I became a mother. Now I know why my mother always worried about me even after I was grown and on my own. Simply put, mothers never stop worrying.   Therefore, the degree of “worry” is multiplied by 100 when your children have autism.

So, yes, the horrible thought that no parent should ever have to think about weighs heavily on my mind and heart daily. Who will take care of my children when I am gone? The daily stress of this thought will never go away because it is real. It is going to happen whether I want it to or not.

I can try to explain this worry to others but the only people who really understand and “get it” are the other parents of children with autism or other disabilities.  They know what it feels like to have this heavy worry on their shoulders daily.

So, to the mothers and fathers out there that have this worry every single day too, you are not alone. It is real. It is normal. We have many worries and fears in our life raising our children with autism. If you are like me, you don’t want to even think about this daunting thought but how can we not think about it?  So, if you have a day where you shed countless tears over this thought that is okay! We are human. Our journey is not an easy one and it will never be easy.  Cry. Scream. Kick. Do whatever makes you feel better! You are subject to that from time to time.

We just have to take one day at a time even if it is full of worry and heartache.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

There’s This Thing…

There’s this thing.

It’s driving you crazy.

It’s different for every child, of course, but whatever it is your child is fixated on it.

Maybe it’s a favorite TV character or show, watched over and over and over.

Maybe she just won’t…stop…sucking…her…hair…

Maybe he keeps asking whywhywhywhywhywhywhy?

You wake up each morning, ready to start a new day. Fresh, energetic, going to tackle the world. Or at least your small part of it. You swear you will not get upset or frustrated. Not today. Oh no, today is going to be different, better, perfect even. You practice smiling in the bathroom mirror. You take a few deep breaths. Today is going to be the best day ever!

But first, coffee. You pass the family room to get to the kitchen…

And there she is, on the iPad, sucking her hair.

And there he is, watching the same episode of Gumball, for what? The hundredth time?

And what’s that they’re wearing—his bathing suit in the wintertime? Her footed pajamas in this sweltering heat? Is he even wearing anything?!

And just for that moment, you see RED. All that good will you had a minute ago—it’s gone in the blink of an eye. The stress and frustration and despair engulf your entire body, oozing out of your pores. You want to scream, kick the cabinet, tear your hair out, and more. You want to cry—lock yourself in the bathroom, turn on the shower, and just have your own meltdown. Above all else, you want to turn in your Adult card for the day.

I’m the one that gets to tell you: Life doesn’t work that way. Take a deep breath. Suck it up. Dry your tears. Take another deep breath. Relaxxxxxxxxxxxxx. Things could always be worse.

One of the phrases I seem to say the most is “This too shall pass.” But, guess what? This thing might not. It just may be something that you learn to deal with, or at least accept, as part of your life.

More likely, it’s just a phase. And phases do pass. They pass without any warning. One day she’s doing that thing that she’s been doing for what seems like forever, and then the next she isn’t. At first, you won’t notice. You’ll just feel like something is missing. And then you’ll realize what it is. Whoohoo! Finally!

But don’t pop the champagne yet—you won’t have time to celebrate. Because while old habits might die hard, new ones are waiting in the wings to take their place.

Whywhywhywhywhywhywhywhywhywhywhy?

Believe it or not, the things that drive you crazy may just be the very things you miss one day.

Autism. Boys will be Boys.

As any parent will tell you, time flies. My son just turned 10, which means he is now that much closer to being a teenager. When he was 9 years and 364 days old it still seemed far far away. There is something about the number 10 that puts the whole growing concept in perspective.

He’s no longer a kid. Well, he is… but the teenage years are closer now, which means I also need a different perspective.

As an Autism Dad of a son it’s challenging. I know Moms have challenges also but this is only from a Dad’s perspective since I won’t pretend to relate to how a Mom thinks.

Autism is a challenge that I never dreamed of but you learn to do the best you can. Sometimes I fail. Sometimes I fail miserably. And sometimes I exceed all my expectations and learn more than I ever thought possible. Autism is not just a diagnosis but also a teacher. It has taught me patience, understanding of others and so much more.

However, today I need to remember and incorporate a quote almost every parent has heard.

“Boys will be Boys.”

Autism is a 24/7 challenge but all kids (with or without autism) at 10 years old are now starting to grow into their teenage years. Last week there was a “playground incident” and when I found out what happened it was simply two boys frustrating each other. Nothing major happened and I really don’t think Autism played much of a role in the “incident.” When he was 9 I may have been more defensive, but let’s be real.

Kids play together. Kids push each other. Kids tease each other. Kids make up fast.

“Boys will be Boys.”

I have to remember this. We live in a world where people cry disability, religion or race way too often when all the situation really is about is two people having a moment the same way we all did as kids. Thirty seconds later they have forgotten about it; so should we.

In a strange way, these incidents also make me proud that my son continues to interact and learn with typical children. I may not be here forever with him but even if I am, lessons learned from your peers are often just as strong (or stronger) than what parents tell you.

Let’s not forget we were all kids once upon a time.

An Open Apology to a Special Needs Parent

Sorry.

I am less than perfect. I have no difficulty admitting that although, I confess, it wasn’t always so easy. But parenting does that to you. Among other things, it continually smacks you in the face with the fact that there is so much you just don’t know (and never knew that you’d need to know), as well as the fact that you’re not only not perfect, but all too often you’re just barely adequate. Once you recognize that you’ll never be perfect as a parent (and that’s okay, and likely a blog post for another day), it’s not that big a leap to admit you’re not perfect as a person.

Oh, don’t get me wrong. I try—I’m always trying. And really, isn’t it the striving for perfection that brings out the best in us?

My confession to you is that, in recognizing my imperfections, I recognize the occasions that I’ve been THAT person. It wasn’t intentional, but I’ve done it. I’ve judged you.

Not so much for the meltdown in the supermarket. Screaming children having some sort of episode–I have experience with that. I understand being mortified among strangers and also how difficult it is to not always have control of what happens when you leave the relatively safety of your own home. I’m also sympathetic to the fact that some things are just beyond a parent’s energy to deal with. My hand is raised: Been there, done that.

If I see it happening to you I will offer my help, in whatever way you can use it, though I know you will likely turn me down. We will share a smile that’s more of a wry grimace. The battle-weary always recognize one another.

But I have judged you in the restaurant and the mall, and whatever other place that you’ve sat down to enjoy a quiet moment—by yourself, with your spouse, with a friend—and you’ve handed your phone or other electronic device to your kid so that they’re quietly entertained and, more importantly, leaving you alone.

Oh yes, I’ve judged. Because, while I freely admit that I’m not a perfect parent, I do take immense satisfaction in the fact that my family can go out to dinner unencumbered by electronic devices, and actually talk to one another while we eat. My husband and I have, in the past, commented on people around us who let their kids play on their phone or tablet during the meal, appearing to not actually want them there, but perhaps stuck with them because they didn’t have a grandparent, babysitter, or other person to watch them.

I had never before considered that the device was for the benefit of the child, and not the adult. That without it, he or she might not be able to sit still, settle in, acclimate to a strange place, keep from freaking out. In essence, the device is giving your child a tool with which to self soothe. This means that, far from being a “bad parent,” you indeed have your child’s best interests at heart.

And, so, I apologize. You might not even care: You shouldn’t care about the opinions of others when you’re doing the best for your child. After all, parenting is a highly personal thing.

But I’m apologizing anyway. Because I was wrong. Because it wasn’t my business. Because this parenting thing is hard enough without having to deal with the scrutiny of others.

Because not one of us has the right to judge another.

5 Tips for Planning a Special Needs Birthday Party

Birthday Cake

Planning a special needs birthday party is really not that much different than planning a birthday party for a child without special needs. For either child you should take into account all of their likes and dislikes, with the goal of having as many of their favorite things and as few (if any) of the things they don’t like, as possible. If you can, involve your child in the planning so that they can help you make decisions related to their big day.

Of course, don’t involve your child if you know that they’re going to ask for something totally unattainable. You know, like having Taylor Swift or a real dinosaur at their party. Or “tie-dyed” cupcakes that involve separating the batter into six different bowls, coloring them with different food dyes, layering each color into each individual form in the cupcake pan, and then baking them, all the while muttering that you’ll never, ever do it again—this may or may not have been me.

I’ve learned over the years to think about my kid’s personality and come up with a potential theme that I think they’ll like, and then run that by them. Some kids like choices and some don’t, so factor that into consideration too. You can easily make the choice for them if they’d prefer that. However, don’t make it a surprise if your child absolutely, positively panics in the face of surprises.

Here’s some more advice for throwing a party for your special needs child:

#1 – Keep the Party Small

If your child gets easily overwhelmed in crowds or has sensory issues such as aversion to a lot of noise, it’s best to keep the party small. Depending on the type of party you have, more children can also mean more waiting, as in waiting their turn to play a game, waiting in line to get food, etc. Most children, on or off the spectrum, hate waiting.

There’s no need to make your special needs birthday party into the social event of the year. Keep the guest list simple and invite only your child’s close friends and/or extended family members. I’m sure that if you ask your child who they want at their party, the number of names they mention could be counted on one hand—possibly two.

#2 – Ask Parents to Stay

Along with inviting just a handful of guests, ask parents to stay at the party if their children also have special needs. This will not only keep you from being outnumbered by kids, but will also prevent you from having to be in three places at once. Well, in theory at least.

Problems and meltdowns can happen in an instant with children, so it’s better for all involved if a parent is there to help out if their child gets upset or needs help. If a child decides that they’re no longer having fun at the party and want to go home right away, you can circumvent any potential tears or fits that would happen if they needed to wait for their parent to come by simply having them there already. Parents of kids with special needs usually won’t just drop them off at a party anyway, so this shouldn’t be a problem.

#3 – Think about Gifts

It may sound strange, but not all kids like presents. I know a little boy who doesn’t like change, including new things. Birthday presents are definitely new things!

If you have a child like this, and you think they’d do better not receiving birthday gifts, feel free to note that on the invitation to your child’s special needs birthday party. If your child merely gets anxious and would rather not open the gifts in front of other people, don’t make them. Instead, set aside time after the chaos of the party is over and the guests have gone home for them to have a quiet moment to look through the presents.

#4 – Monitor the Menu

Kid’s birthday parties are usually a time for serving up all kinds of foods that they’re not allowed to eat on a daily basis. Typically, these are sugary foods like cotton candy, cake, and all things chocolate. Kids who digest too much sugar tend to get hyperactive, and if they’re already hyperactive to begin with, you’re setting them up for behavior problems that they can’t control. Instead, consider party foods with low sugar contents, or only feature one food–such as birthday cake–with sugar in it. After all, it’s a party—you don’t want to kill all the fun, right?

#5 – Play to Their Strengths

If your child is highly energetic, do NOT plan a sit-down, make-quiet-crafts kind of party. Remember, the goal as a parent is to always try not to set your kid up for failure. Instead, a highly energetic kid will benefit from a highly energetic party—think about a sports party or keep everybody busy with lots of games. I’m talking about Musical Chairs 2.0, at the very least.

On the flip side, quiet, introspective kids will appreciate a low-intensity party. Ideas for this include tea parties and parties where it’s just the birthday child and a couple of friends out to the movies. My son loved a party where a local “reptile guy” came to the house and just quietly discussed and showed off his scaly brood.

Above all, birthdays are times for celebration, whether low-key or over-the-top. Do what will ultimately make your child happy while at the same time causing you the least stress.

I Have Autism, I Am Extraordinary

Extraordinary

Scrolling through my Twitter feed with a cup of coffee firmly in hand is the usual way I start my mornings (a benefit of working from home). This morning I stopped short at a tweet from @HopeandHaven in answer to somebody else. The other person appears to have a wide spectrum of disorders, including autism, and obviously intended to make a positive sentiment about optimism and strength, but tagged autism under the umbrella term “Mental Illness.” HopeandHaven’s reply was simple and beautiful:

I agree with your sentiment but I don’t agree that autism is a mental illness. I am not ill. I am extraordinary.

“I am not ill. I am extraordinary.” Truly brave words. Have you looked at your autistic child and thought how extraordinary they are? Or have you been so focused and bogged down by the daily issues of raising a special needs child that you’ve never taken that step back to truly see them as they are?

Special needs or not, we are all extraordinary in our own way. We each have strengths and skills and good things to offer the world. It takes courage to not just recognize it in yourself but to declare it proudly and loudly to all that will listen. Because this world can be tough, and individuality and uniqueness are not always valued the way that they should be. But they should be, and you can help.

How? As with most things, by starting locally. As in, locally in your own household. By raising a child whose individuality is celebrated and not criticized. By recognizing your child’s successes and not giving too much weight to their failures. By using teachable moments and emphasizing learning experiences, but not overusing or overemphasizing them. Because everybody makes mistakes, and not just people with autism.

Autism is not an illness or a disease; your child is not a punishment or a curse. They are not ill; they are extraordinary.

Can you see that? Have you ever stood in wonder as your whiz kid performed complex equations in their head? Do you ever take for granted that your ultra-shy child can sit down at the piano and play any tune by heart? Does it matter that he can’t tie his shoes or that she only wants to wear the color blue? Are you so happy with the rules that life has made you follow that you want your own child restricted too?

Sure, society has guidelines and it’s our job as parents to prepare our children to live within them. To a point. It’s also our job as parents to teach our children to find happiness, isn’t it? So perhaps it’s time to leave our own ideas and expectations at the door and understand that their happiness will not come on our terms. Instead, their happiness is deeply rooted in the things they love to do and their ability to do them. Help clear their road of obstacles to reaching that happiness.

Make sure they know that they are not ill—they are extraordinary. And they can accomplish anything.

Parenting: The Hardest Thing You’ve Ever Done.

Parenting

What’s the hardest thing you’ve ever done as a parent?

It’s not an easy question, is it? Your mind races back through so many snapshots; a fast-flipping Rolodex of moments and memories.

I remember my first (but far from only) hard parenting moment as if it was yesterday, and not already 13 years behind me. We’d just brought home our firstborn, a nearly ten-pound boy who emotionally enlarged my heart and physically exhausted my spirit. The staff at the hospital had intently focused on nursing and diapering to, I’d discover, the detriment of other little, important parenting things. Such as swaddling.

How hard is it to wrap a blanket around a newborn? you might ask. Well, let me tell you. I was close to freaking out when it was just the three of us at home–no nurses, no grandmoms–and I realized I had no idea how to wrap the baby and tuck those corners in so that the baby package stayed together. I laugh at it now–because, c’mon, anybody who has made a wonton, blintz or spanakopita can swaddle a baby–and know it’s a skill you never lose once you learn it. But there I was, an avid puzzle and game player, nearly brought to tears by one squirming baby and the blanket that just WOULDN’T STAY WRAPPED.

Of course, there have been many more difficult parenting moments in the ensuing years. Life has a way of throwing curve balls with no hints to warn of upcoming meltdowns and misadventures. Good intentions only get you so far, and usually that’s not nearly far enough. There are days when parenting is simply a minefield and you’re out there on your own, tiptoeing around, never sure if you’ll successfully avoid disaster.

Autism itself is a giant curve ball, but that doesn’t mean you can’t adjust your stance and master your swing. Parenting is compromise, revision, modification. I’ve learned to stop focusing on the home run—whether it’s the desire for a day out to go as perfectly as planned or a kid to have any interest in my favorite childhood book—and instead celebrate the times the bat simply connected with the ball. (Pardon the baseball imagery; themes crop up occasionally). After all, parenting is in the small things.

Of course, I miss those days when the worst I could do wrong was not correctly wrap a blanket, or warm a bottle, or answer a distress cry quickly enough. That 13 year-old is currently at sleep-away camp. It’s his second year and I’m the one who championed the experience. After all, children need space sometimes to discover who they are and who they can be. But I miss him. Daily. As we sit down around the kitchen table for dinner each night, there’s an empty space at the table that both tears at my heart and makes me thankful that it’s temporary. For now.

Because I know we likely have more years behind us than ahead of us in which either of our children will still be sitting around that kitchen table, telling us knock-knock jokes and testing out their newly acquired semi-raunchy vocabulary on an always-responsive and always-supportive audience. I also know that our protective control over their lives is slowly eroding as they grow and move on. At some future point, we’ll have to let them fly away, hoping to God that the world is kind and we’ve prepared them to adequately navigate through it.

The end game is always independence, is it not? The irony is that we are the ones who help them gather the feathers and teach them to make the wings that take them away from us. And that, my friend, is truly the hardest thing about parenting.