Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Progress: Yes!

One on my peeves in life is that every generation wishes they’d been able to fight the fights of generations before. Some won’t even acknowledge progress because that might somehow diminish what they are trying to achieve now. I disagree. Praise the work done and build on it.

“The cherry blossoms are blooming, the daffodils are bright, and it’s getting just warm enough to enjoy an early evening walk without a jacket. It’s April in Bethesda, time to dust off the outdoor furniture, put away the winter clothes, and... focus on autism. That’s right: April is Autism Awareness Month, time to take stock in where we’ve been, figure out what we’ve accomplished, and think about next steps.

First, we must recognize that for most individuals and families impacted by autism, though research has resulted in many positive changes, we still have a long way to go. In this spirit, it is worth spending a little time thinking about what the state of autism research and knowledge was approximately 20 years ago, how that has changed, and what we hope to know 20 years from now.”

This is taken from an article from April 24, 2019 by Joshua Gordon at the NIMH. I encourage you the read the whole article.

“What will the state of autism research look like twenty years from now? It is incredibly hard to predict, but knowing the work we’re doing now, I’m optimistic that we will make important strides in the coming decades. I am hopeful that in the next 20 years, we’ll have thoroughly defined the genetic factors, and many of the environmental factors, that underlie the biology of autism, including the variations we observe across the spectrum of ability, gender, and the lifespan.”

So, whether you are team blue or red, put down your weapons of division and join together for a “future with optimism and commitment.”

We’ve come a long way, baby.

https://www.nimh.nih.gov/about/director/messages/2019/progress-and-priorities-in-autism-research-its-beginning-to-feel-a-lot-like-springtime.shtml
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Celebrate the small stuff. Be flexible. Laugh.

I would like to preface this article by saying I love my son, with all my heart, but to describe my interpersonal relationship with my son can only be summed up as challenging. From the moment he was born, he was a pretty easy baby. I remember the periods watching him stare at sunbeams flowing through the windows and wondering what is it that he is looking at? As a father with a child, particularly a son, you have many wishes and fantasies of camping, fishing, sports, and masculine ideals that quicken your heart in anticipation of the joint participation with him. That was not what was going to happen.

Despite the diagnosis, I didn’t believe it for quite some time. My son was quirky and had particulars that I never recognized as anything that was an alternative thought process. I just went along as if everything was OK, even though my other older son never displayed the same behavior. I remember calling home from work to hear my wife crying. My 4-year-old son punched his mother’s stitches that she had from a recent surgery. It wasn’t that the act alone was the catalyst for a change in my attitude; it was several events that made me see that my son was not normal. I relented to my wife’s pleas, and joined her at child psychiatrist, and agreed to have our son try some medication. What I was hearing from them began to crush those dreams I had for our son. I started to believe that he would never lead any kind of healthy life and would live with us for the rest of our lives.

At the time, and in my immaturity, it was devastating. I was angry and sad at the same time. Kaylynn and I spoke a lot about it. She tried to share what she was learning. I just went with the flow. As the saying goes, “fake it till you make it.” That is what I did. Our son scared me a lot during his growing years.

The many dangerous things he did were oblivious to him. Our family tells stories about what our son has done, and many of them are humorous now, but back then, they would make you turn white with fear. I do have good memories and favorite things that happened with our son.

My son did something that made me angry, and I chased him out of the house. As he took off running away from me and around the other side of the house, I was in his dust. We went around the house running full speed at least three times. By the 4th time, I couldn’t see him anymore. I thought he was still just ahead of me because he was running slightly faster than me. I thought if I could catch him, that would be quite the accomplishment. My son was speedy. I ran faster after him, and next thing you know, the little squirt came up behind me and was on my side. We looked and at each other. My son laughed and took off running again, believing this was a fun game, and he was playing with his dad. I was fuming, but after I saw the joy on his face, I realized this was a game. That child-like characteristic continues to this day.

I couldn’t see it all the time he was growing up, because I had a certain way I believed he was supposed to be, and I was wrong. Little moments like that with my son reminded me how much I love this boy. My son helped me learn unconditional love, and for that, I am grateful. Due to the stable and dutiful efforts of Kaylynn, our son surpassed many of the psychologists’ expectations and ours.

He graduated from High School, he met and married an excellent companion for him, and he learned a valuable skill and trade that will help sustain him and his family for a very long time. These things were not what I thought and planned in my dreams for him, but he accomplished them on his own (with a little prodding by his mom) and has become someone that his brother and sisters fiercely defend.

Our son has had additional health conditions over the years. He created a school lock-down situation in elementary school. After our son had calmed down, and we were able to retrieve him, we took him to the University of Utah Pediatric Psychiatric Care hospital, and he was institutionalized for a couple of weeks. You would have thought that we had abandoned him to the Edwardian orphanage, according to my other children.

They were very upset at Kaylynn and I. (Once our son returned home from the hospital, the stories he would tell about his experience sounded very medieval, but we knew only to believe 50% of what he told us. And they doctors knew to believe only 50% of what he said them about us.) I knew that day, that the bonds between him and his siblings were going to be very strong, and that in all of this adversity, that my children love and like each other and are genuinely friends with one another, and they know no other way.

They were also there for him when another medical issue came up. This one was even more scary and dangerous. His adrenaline would spike, causing him to have amnestic rages. These were terrifying, and I couldn’t help because I was in Korea again. They helped Kaylynn care for him and helped him with his schoolwork while he was having school at home.
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My son continues to struggle, and to this day, we do not agree all the time, but he has accomplished so much, and I am very proud of what he has done. Every day is something new, every day is a small victory for him, and we celebrate the small stuff.

As you guys know, my Mom has been writing every day for Autism Awareness month. She asked me to write up something too as a brother, so I did... It's kinda long. I'm sorry about that, but I am passionate about all of it... So buckle up!

- Autism from a brother, who is also an ally, playmate, babysitter, protector, and friend.

There are lots of things that I wish I could express. Reading what my Mom has written over the course of this month has caused a real swirl of emotions. She asked me to write something too, and I kinda shrugged it off, until I read what she wrote and I relived those days. And I have to say as a brother; I truly would have never had it any other way. Sure I've never not had an autistic brother. But that really only means that I've never missed out on being loved by someone so fiercely that even with the cognitive restrictions and walls autism places on emotional connection, they were able to find me within themselves and make me a part of them. It's hard to describe, but you almost feel like you've never known love until that person decides to cuddle with you because you to them are safe. And in turn, it makes you feel safe.
I'm only two years older than Matt. Much of what I know as a brother comes from the perspective of a child who also was growing up. But I can do my best to speak to those with autistic siblings.

1. DON'T MISS OUT. Younger sibling , older sibling, still children, or adults, don't miss out. You have one of the greatest and most gratifying opportunities for love and development of human compassion that mortality can give you. Don't let it go. Don't wall off your awkward, violent, sometimes gross, and often embarrassing sibling to try and spare yourself. You will feel a lot of things, and that is OK. It is OK to feel embarrassed; it is OK to feel like it's hard. But the reward in love trumps every downside, even if it goes un-reciprocated. You may not understand it yet, but you will if you try. You will learn that the love you have for this other human IS the reward. Having them being able to say it back is that extra piece of eternity that you get to have now.

2. Protect them. I have always and will ever be my brother's keeper. Your sibling may not understand what is happening all the time. Other mean kids or adults will, at some point, take advantage of this, and you will feel the pain in your heart as you see others mistreat them. Stand up, do not accept it, even if it puts you at risk. In most cases, the other people will back off. Luckily and unluckily, my brother could protect himself physically; he didn't need me for that. But he needed me for support and to show he had a friend who was NEVER going to turn on him that his family was there for him always.

3. Play. Play a lot! Do what they want to do! Play the games they want to play the way they want to play it. Be yourself and be safe, but connect. They struggle to connect, but when they do, boy do they! My favorite times growing up weren't with the neighborhood kids, they weren't at school, they were in the corner of our shared bedroom by the Lego table where we would play for hours and hours our own little Lego Sci-fi. So go make movies, have dinosaurs attack your GI Joe's, just be a better sibling than me, and lose the game from time to time. But know, however, it's always better when you play on the same side.

As they get older, listen to their interests with interest. My brother loves video games more than a Mt. Dew fevered 14 year old at a Halo Lan party in 2005. I don't play hardly at all anymore. But I love listening to my brother tell me all about his Minecraft server. And when I'm home, and I have time, I make sure we play something because that is how we connect.

4. Be proud and be proud of them. As an example, my brother just got made a manager at his work, he lives in his own house, and he has been married to his beautiful wife for some years now. I fly airplanes for a living. I cross the country at 38,000 feet, and I think that is pretty cool. But I could be an Astronaut, and that wouldn't be enough to compete. Because there is spacewalking Astronaut cool and then there's my brother cool. He went from non-verbal, violent, bullied, and low functioning to the social, intelligent, witty, strong, loving man he is today. That's not even the cool part; the cool part is whatever he can and will CHOOSE to do and be in the future! This because he is invariably and irrevocably himself. He found himself behind the walls of his cognitive and emotional barriers and grew in authenticity unashamed.

"He ain't heavy; he's my brother" (check out the lyrics)

Now not every case is like his. And yet, every case is.

I'll try to elaborate. Every single little victory, every single little defeat, every up, every down, every battle, every peace made me grow, made him grow, made my family grow, and, most importantly, made the love grow. The reward is the love. And that is how all the autistic brothers in the world are the same, in spite of differences, severity, or situation, Love is required. The love I have for my brother, and in turn all my siblings, taught me, through the schoolhouse of autism, is the only gift, the only lesson, the only choice that if I go to the grave with nothing else, I'd have lived a good life. Because he is my brother forever, and I'm thrilled.
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5. so, love them with everything you've got!

Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

Autism and Romance.

Autistic people have hearts, hopes, and want to love and be loved, just like everyone else.

Over the years, my son has had amazing friends (and some not so amazing friends), been hurt, and even traumatized. But he has only had one girlfriend!

When my son turned 16, he decided he was going to take a date to every “big” dance. He would listen to his friends and classmates and determine who really wanted to go and plan a personal invitation. The thought he put into his choices was truly remarkable. He showed incredible empathy.

I have to tell you I was way more nervous than he was the first time he asked a girl to homecoming. I was sending my “special guy” out in the cold, cruel world. And I wouldn’t be there! I was terrified!

But, he chose young ladies who treated him with as much kindness and respect as he treated them.

Then he met “Her” at an after school club. He was smitten. They married two years later. It has been a challenge. Navigating marriage is hard even without autism. But, “She” is excellent with him. (Her older sister has autism.) She has a tremendous amount of patience. And my son has an unlimited amount of unconditional love. Almost a decade later, and they are still working, living, and loving together. They are indeed perfect for each other.

Happy Anniversary, you two.
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Restraints: Sometimes it’s Necessary

De-escalate, redirect, mitigate; try everything you can. But when there is nothing left to try, what do you do? You can’t let your child hurt themselves or others. Restraint is an intensely controversial subject. I get that, and you may disagree with me. This is my experience. My son could get violent, and he was insanely strong even at a very young age.

I learned several forms of physical restraint using my body to protect my son from himself. And to protect others from my son. His psychologist taught me; he knew my son well, and the violence my son was capable of. There are many other places you can learn them, schools, therapists, and online.

I would sit on the floor behind my son. I wrapped my arms around his upper body and my legs around his hips and over his legs. I spoke in a soft, quiet voice, explaining what I was doing and why. As his muscles relaxed, I would begin to stroke his arms and legs as I released the pressure. When he was older, I noticed that he would do this to himself, using heavy blankets or small spaces to calm and soothe, to help center himself in space, and to cut out stimuli.

I pray you never have to restrain your child, but if it is necessary, I hope you know how to do it safely.
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Stimming: Is that even a real word?

“Stimming” is the term used for “self-stimulatory behavior” and is sometimes also called “stereotypic” behavior. Stimming usually refers to behaviors used by a person with autism that can include hand-flapping, rocking, spinning, or the repetition of words and phrases.

Most children will practice stimming at some time or another. It is quite common and necessary for childhood development. Many children suck their thumb or rub their fingers on a favorite blanket as they learn to self-soothe or to distract the mind. It is only when they are, or become repetitive, dangerous, or socially unacceptable that they need to be addressed.

Some examples of stimming for our son where boinging the doorstop springs, pushing buzzers and bells, hand flapping, turning in circles, running into the wall with his head, and putting his finger in his belly-button. Each child is different and will find their ways of blocking stimulus and/or self-comforting.

With physical objects, it is easier to avoid or remove them: take off the doorstop springs, put bells and buttons out of your child’s reach. When it comes to their own body, it is much harder to mitigate or redirect. We found that warm blankets, firm stroking, and full body wraps helped. There are many tools specially designed for comfort available now. Try, experiment, find what works for your child.
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Celebrate the small stuff. Be flexible. Laugh.