Jen holding her son

I still carry my son.

He wraps his legs and arms around me and buries his head into my shoulder, sometimes raising his eyes just enough to watch what is happening behind us.

Jen holding her son

I am a rather petite woman. My son is nearly half my size. We get a lot of strange looks walking into elevators, stores and restaurants.

Sometimes someone will smile at me and ask, “How old is he?”

“Almost 5,” I’ll answer, as their eyes widen slightly. Then I kiss his head, smell his little boy hair and hold him even tighter.

Sometimes I catch someone rolling their eyes or even remarking I’m spoiling him. Maybe I’ll explain my beautiful boy has autism. Maybe I’ll ignore them. Maybe I’ll cut my eyes at them in a way only a special needs mom can.

My son is a “runner.” My son is impulsive and often has little regard for danger. He gets uncomfortable in new or unexpected situations, and when I’m carrying him, he’s less likely to melt down. He won’t jump, he won’t yell, he won’t stim. He’ll dig in and hold onto me even tighter. He feels safer when I carry him. I carry him for him.

woman holding her son Though if I am honest, I carry him as much for myself as I do for him. I carry him because I still can. I can protect him for just a little while longer from this outside world that isn’t made for him, that isn’t easy for him.

The overwhelming fear of not being able to keep him safe from physical harm, from emotional harm, from judgment and from misunderstanding keeps me up at night. It takes my breath away in the middle of the day. It makes me shake my fists and it brings me to my knees.

If I knew, without doubt, I could keep him physically and emotionally safe forever, I would lift weights until I was 80 so I could keep carrying my 50-year-old son.

I know this behavior physically can’t go on much longer – my body won’t be able to handle it. Pretty soon, we will have to figure something else out.

But for now, I’m going to carry my boy everywhere I can and anytime I can because he needs me to – and because I need to.

I’m just not ready to set him down yet.

 

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I have never been into Pokemon. I was an adult when Pokemon came out in the 1990’s, and I remember hearing about and seeing kids play it, but it never really interested me.

Twenty years later, Pokemon is an empire with followers who are as loyal and ardent as any “Star Trek” or “Doctor Who” fans.

And though it still doesn’t really interest me, the Pokemon Go phenomena has caught my attention.

Pokemon Go is a new game, available as a free app for download on smart phones, which encourages people to get outside and find the Pokemon creatures. Here’s a better explanation:

In simple terms, Pokémon Go uses your phone’s GPS and clock to detect where and when you are in the game and make Pokémon “appear” around you (on your phone screen) so you can go and catch them. As you move around, different and more types of Pokémon will appear depending on where you are and what time it is. The idea is to encourage you to travel around the real world to catch Pokémon in the game.

This game is what is called augmented reality (AR), using smartphones and tablets to project an image related to the game into the background of whatever you are looking at, via the tablet or phone screen.

My son had a “Jurassic World” AR app which projected dinosaurs into our living room (at least on the tablet screen). He loved seeing T-Rex looming over our couch and triceratops sitting in front of our TV.

Pokemon Go is also a location-based game, meaning the more the players move around, the further ahead in the game they can get. It is like getting ahead by moving around the Monopoly board, except on your neighborhood streets.

It is unlikely I would have done this for my own entertainment, but what about using it to get my son out of the house every day, even just for short walks?

Bingo.

While he had not heard about the app, to my surprise he was well versed in Pokemon. He knew what Pokemon were, how to capture them, and with his prior AR experience, took to the game as a proverbial fish to water.

The boy who fantasized about his whole summer being in front of his computer was voluntarily outside walking around.

I set up the game so it can’t access things I don’t want it to, and I walk with him to make sure he does not trip or injure himself while playing.

We have seen others out and about on the hunt in our otherwise sleepy neighborhood — kids with their tell-tale phones in hand, stopping to look around them, looking at the phones, and then moving on.

We stop, say hi, share our experiences, and then continue the hunt.

He commented regularly how it would be more fun if he were hunting dinosaurs instead of Pokemon, but he also showed clear signs of enjoying himself. His being willing to leave the house was a huge sign, and to me a big deal.

Thanks, little pocket monsters.


I’m frustrated about a word: behaviors. Many of you may know what I’m talking about and are probably nodding your heads as you read this. You see, if behaviors are mentioned to you by a teacher, therapist, counselor or a parent, it’s probably not for a good reason. You may have heard remarks similar to the ones below:

We’ll work on his behaviors. Here’s our plan …

I don’t understand all these behaviors. What do you let him watch on TV?

His behavior is escalating.

And my favorite of all time: “What’s wrong with him? He’s never acted like this before!” My answer: “Nothing is wrong with him. He has autism and is frustrated/tired/overwhelmed, and so am I because I don’t know how else to explain this to you. But nothing is wrong with him.”

I don’t believe in the term “behaviors.” I don’t really believe in the idea of a behavior plan. I think it’s demeaning and inaccurate. My son is communicating, but people aren’t listening. And the technique of using candy to “teach” him to react in a way that the neurotypical world deems more appropriate creates a Pavlov’s dog scenario. My son is not a dog.

Do I want him to run out of a room crying because he is so upset? No. Do I want him to yell “shut up” to an authority figure? No. But I don’t think these are “behaviors” in the mainstream sense of the word. My son’s actions have meaning. He’s frustrated. This is the only way he knows how to communicate in that moment. For him, it’s fight or flight because he’s overwhelmed, having sensory overload or doesn’t understand an assignment. It’s a combination of things. Even he may not know the reason, but there’s a reason.

Over the years, I’ve been told to scold him. I’ve been told to take away privileges and give him consequences. For what? For becoming overwhelmed, scared and panicked? Because four hours after the event, the consequences mean nothing. And with moderate autism, sensory processing disorder and severe ADHD, the impulse control isn’t there. I won’t punish him, but I’m sorry he felt that way. I’m sorry he was so immensely upset that he acted out physically or lashed out verbally. My heart breaks for him in that moment because as a mom you want to prevent pain, fix it and make people understand.

When he says “I can’t do it” or “I give up,” it’s because the concept is hard for him and he’s panicking. When you add all the sensory stimulation, it’s a recipe for a meltdown. A meltdown is not negative, attention-seeking “behavior.” It’s his physical body and mind imploding and beginning to shut down from total and complete suffocation — he’s trying to escape to survive.

At that moment, he feels like he can’t do it. He doesn’t understand what’s going on or has some problem he can’t express. He doesn’t want to have a meltdown. His behaviors aren’t something to “deal with” or “get under control” — they’re something we should try to understand.

His feelings are important. He is asking for help at these moments. A break. A time out. An escape. An explanation. Reassurance. A way to help him de-escalate. A hug or other physical outlet to free him from the fight-or-flight feelings that are taking over.

I believe my son’s behavior is communication. We all need to start listening better.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


For John, my younger brother with autism, death is his biggest fear. He’s afraid of what will happen when to him after Dad, Mom, Joe (our older brother) and I die. We’ve tried to assure him he will always be taken care of either by a family member or by the state. But his fear of the unknown frightens him to tears.

Throughout John’s life, family members have passed away. Since John hardly knew them, their deaths were sad but not emotionally impacting. But this all changed after Grandpa died in April 2015. This was the first death of a close relative. Through our experience with our grandfather’s death, our family learned how to help John cope with death and grief.

1.
 We were careful of what we said.

Grandpa died as a result of compilations from a fall. From the time of the fall to his death, we watched everything we said about the situation. With John’s intense fear of death, we didn’t want John to hear the details of Grandpa’s fall. He knew Grandpa was in the hospital, but that little information deeply affected him.

We decided to share as much information about Grandpa as possible outside of our home or when John was in school, at a friend’s house or when he was asleep. If information had to be shared when John was around, we would text, go to another room or speak in Spanish (John isn’t fluent in Spanish).

2. We monitored our mourning.

From the day of Grandpa’s death to the day of his funeral, we kept a close eye on our mourning. Mom didn’t want John to be more upset than he already was. We did cry in front of him to show him crying is a normal part of mourning. But we did our best not to lose control of ourselves. The last thing we wanted to do was to make John even more afraid of death.

As difficult as it was for us, it was even more difficult for John. He was trying to make sense of what was happening, as well as dealing with the multiple feelings brought up by Grandpa’s death.

3. We encouraged John to ask questions.

To help John cope with Grandpa’s death, we told him if he had any questions, we would do our best to answer them. By allowing John to ask questions, we felt it would help him understand and better deal with the grief of Grandpa’s passing.

Two days after Grandpa’s death, John felt ready to ask questions. The questions varied from “Why did Grandpa have to die?” to “What will happen to me when everyone dies?” This a hard conversation to have, but it helped him cope with the deep loss he felt.

4. We allowed him time to cope.

Two weeks after the funeral, Grandpa’s headstone was installed at the cemetery. The family went to go see it. I asked John if he wanted to come. All he said was, “When I’m ready.” We left it at that.

Later, on the first anniversary of Grandpa’s death, John went with us to visit him. After looking at the grave, he rushed back to the car and stayed there until we left. The reality of Grandpa being under the ground was too much for him. I give John credit for going to the cemetery and facing his fear.

5. We let him know he’s safe.

John went to the cemetery because he felt safe. He knew if he had an issue there, we would help him work through it. Before John could feel safe, he needed to feel he could trust us. It took many years to build up the trust John has with us. Now he knows he can come to us with a problem, and we will help him.

We have no control of what will happen tomorrow. That’s the cold truth. Currently, we’re taking legal steps to ensure John will be protected, whether it’s a family member or the state.

There’s no easy way to talk about or prepare for post-death arrangements, but we need to prepare for the inevitable.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


I’m tired. I’m tired of faking, pretending, masking and being in pain. I’m tired of not being my truest self for the sake of being my worldliest self.

I’m tired of sitting on my hands, planting my feet on the ground and letting all the energy build up. I’m tired of telling myself, “You can do it. Just a couple more hours.” I’m tired of coming home just to rock, spin and flap until late into the night to settle down from the day. I’m tired of exploding at the end of a busy couple days and shutting myself in the bathroom with my weighted blanket, the lights off and fan on to make it go away.

That’s what my life has been the past several months — spending the whole day trying to look like I’m looking at people’s faces only for the back of my eyes to be blank. Forcing myself to be engaging, to spit the words out, to look like I’ve got it all together. Second-guessing everything I say and do to make sure it is “neurotypical” enough. Qualifying statements not to go all the way to what I actually think, not to give my truth. To act like I’m not autistic. No more. I’m tired.

A few weeks ago, one of my mentors and one of the greatest human beings on the earth told me if she didn’t know better, she wouldn’t guess I was autistic. At the time, I was relieved. I was so proud of myself. It was working. I was “normal.” It was worth it. But nothing is worth locking my truest self away. Nothing provides the same reprieve that being the best version of me provides. It isn’t about being the best “normal” version or the best friendly person. It’s just about being the best me.

For me, that means flapping my hands. It means listening intently and listening best when I’m not looking at you. It means rocking in my chair while I work and humming while I concentrate. It means chewing on things — ice, fidgets, straws, anything but gum.

Not being my true self has had drastic consequences. And yeah, acting neurotypical may work for a while, but that’s not how I believe God made me. That’s not how my brain works. No matter how your brain works, you should be free to be yourself. I believe God made me this way and made my brain this way. I am gifted. My brain can see numbers and patterns. My brain struggles with sarcasm, sensory input and social interactions. My brain struggles in certain areas and excels in others, just like the rest of humanity. It just happens that autistics tend to struggle in areas neurotypicals often find easier.

There are definitely days when I wish I didn’t have autism, when I wish I was “normal,” whatever that is. But then I knock out a season’s worth of stats in a couple hours to look for trends and ways to make our team better, and I remember I am who I am. I am who I believe God made me, perfectly me.

So if my hands are flappy, just let me be. Nothing has changed.

I’m tired of being tired. It’s time to embrace me.

Erin posing with someone in front of a photo of the Space Needle

Follow this journey on Erinmmckinney.com.


Every person can experience fear and anxiety; it’s part what makes us human. Sensory issues mixed with obsessive thoughts from my autism cause my fears to be heightened.

Five things I fear, which may seem irrational to the typical mind but produce a fight-or-flight response for me, include:

1. Driving long distances in my car.

My savant mind keeps track of statistics. In 2014, there were more than 32,000 deaths caused by motor vehicle crashes, according to the Insurance Institute for Highway Safety, Highway Loss Data Institute.

I fear becoming one of these statistics. My autism also causes me to become easily distracted, and I fear driving out of state and getting lost during the night on a dirt road surround by cornfields.

2. Change in my daily routine.

One of the main characteristics of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders is repetitive behavioral.

I follow the same rigid pattern every work day. I get up at 5:55 a.m. and head to work. But an infant baby has the power to change my rituals. I fear waking up at 5:30 a.m. and driving my daughter to my parents’ house. I fear being late for work due to a new pattern.

3. Meddling with my toy collection.

I have a $6,000 Calico Critter collection kept in unopened stacked boxes and also animal toys from around the world stored in my former bedroom (or man cave) at my parents’ house.

After my daughter was born, my parents wanted to remodel my old bedroom into a nursery. The honey badger came out of the burrow ready to fight. Needless to say, the collection stayed, and my parent’s guest room became a nursery.

4. Abnormal phobias.

When I was 6 years old, we went for a family vacation. During the vacation, we visited a farm in Missouri. The farmer’s wife had mud-stained, long toenails. For the next seven years, I would experience a meltdown with just the sight of bare feet. This phobia kept me from swimming at the beach.

Two years ago, I read an article about a homeless man who froze to death in an outhouse and his body wasn’t discovered until summer. As you can guess, I won’t be using an outhouse anytime soon .

5. Supervisors and job performance reviews.

I’ve experienced both underemployment and unemployment. I fear having a supervisor call me into his office and stating, “Things just aren’t working out here” or “You’re just not the right fit.”

I’ve learned not to allow my emotions or fears control or overwhelm me and instead move forward. When I experience fear and anxiety, I can talk with my family,
friends or co-workers and evaluate if the situation or problem is something I should fear. I also can take three deep breaths to release my anxiety.

Follow this journey on Spectrum Inclusion.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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