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.