When the ‘Basics' Are Difficult for My Son With Autism

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My son showed me exactly how he planned to install a CPU into his computer yesterday. If you don’t know what that is, don’t worry. You are in good company.

He walked me through it step by step, explaining in painstaking detail how to install it, and how the actual device functions. The way it communicates, what one set of cords does vs. the other, why the motherboard goes in this spot, and so many more things that I did not understand.

I sat there in awe, so proud of the man he is becoming. He is realizing his strengths, and using them to compensate for the difficult aspects of his life. It is exactly what he has been working towards for almost four years now.

I also couldn’t help but feel a pang of confusion and disbelief. He can do all of this, but he may not be able to navigate dinner tonight.

It’s something I don’t think we talk about as much as we should. A child on the autism spectrum may master outrageously difficult things, such as building a computer without ever being taught how to do so. But it can be the basics that are difficult. Eating. Sleeping. Drinking water. Shopping. Taking medicines. Showering. Getting dressed. Playing. These areas of my son’s life can be the most complicated.

Eating and sleeping are basic life requirements, and yet they can be the most challenging aspects of my son’s life. “I’m hungry, but I can’t eat.” “I’m tired, but I can’t sleep.” “I want to go to the store and look at air fresheners, but I can’t be in the store.” Some days he can’t eat the first breakfast I cook because the texture bothers him, or sit at the table because his brother is tapping his feet on the floor, or handle a shower because it’s too much for him after a long day. He has learned to better communicate what is happening. I feel so grateful at how adept my son has become at communicating his needs.

Our life necessarily looks different. My son spends more time learning the basics, like eating and hygiene, than he does with subjects like science and math. And I am 100 percent OK with it.

What makes it complicated is the rest of the world not understanding, assuming he is “spoiled,” and questioning why I allow him to make his own decisions instead of demanding obedience. Doctors, other kids, and even his own brother don’t understand why he can’t just do these things.

He doesn’t have an answer. But I have an answer.

Everyone is different. Everyone has strengths and weaknesses. My son is stronger in his strengths than any 13-year-old I know. He also works harder, every single day, on the things that are tough for him. Sometimes the basics are the most difficult. Sometimes “simple,” isn’t simple. Sometimes development looks wildly different for one child versus another. And sometimes, we just have to proceed at the pace that is right for our children.

I don’t think the basics will ever be easy for my son. But I have seen enough progress to know this:

He will figure out how to best approach eating, sleeping and shopping. Until then, I will help him. I’m his mom. It’s my job, and one I feel lucky to have.

Shawna and her son, standing outside, view from the back. Her son has purple hair.
Shawna and her son.

Follow this journey on Not the Former Things.

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? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I've Learned About Supporting My Grandson With Autism

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I pen this as an observer; I claim no expertise. I’ve never parented a child with autism spectrum disorder (ASD). I don’t go to therapy appointments, I don’t visit the neurologist or the behavioral specialist and I don’t deal with the inevitable daily challenges that a child with a neurological disorder may face.

However, I love a child with ASD. He’s my grandson.

I also don’t have Type 1 diabetes. I don’t prick my finger eight or more times each day to test blood sugar. I don’t position a spring-loaded device on my belly and push the button to insert a cannula to deliver insulin — to literally keep me alive. I’ve never woken from a diabetic coma, surrounded by paramedics and feeling rotten. I’ve never been hospitalized with diabetic ketoacidosis.

But I love a man who does, who has. He’s my hubby.

It’s been a journey. So here I am, 20 years after his diagnosis, still clumsily discovering how to be an encourager and advocate while maintaining my primary role as wife and lover. I avoid being the “diabetes police,” but I’ve said the wrong thing and responded in the worst way when he most needed compassion.

I cannot express the highs and lows (no pun intended) of dealing with diabetes. You can do the same things day in and day out and get wildly different results. Just last Saturday, the excitement of finishing a 5K was clouded within minutes when his blood sugar reading was high. There is big potential damage to vital organs from exercising with high blood glucose. But there are so many factors outside of his control, and virtually none within mine. There were many emotions that surged, from aggravation to fear, but the truth is that you just deal with the present. Adjust, course-correct where possible, and keep living life with this person I love with all of my heart. I wouldn’t want it any other way.

ASD can make everyday things hard for our boy. He has difficulty with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he doesn’t usually show affection. Many times he’d rather play alone than with his siblings. Some days are just hard.

He’s learning and developing skills to cope through therapy and the efforts of his parents. They are his champions.

Watching him run and play outside makes my heart soar. He’s brilliant, this little guy. He loves books — he will sit with anyone who is willing to read. When he is having a good day, he is delightful. His joy is pure and wild and unfiltered. I have high hopes for this boy, confident that he will reach his potential because he is surrounded by people committed to building a strong foundation.

So here I am, clumsily discovering how to be an encourager and advocate, while maintaining my role as his grandma and my daughter’s mom. I am not an expert on ASD, and I’ve said and done the wrong thing. I’ve responded with impatience when I should have been compassionate. I’ve already made some monumental blunders with him. Without a doubt, I’ve annoyed his parents by saying the wrong thing or reacting inappropriately to his behavior. I’ve misunderstood and been misunderstood because I didn’t know enough about his challenges. We’ve learned to extend grace to him and each other.

I don’t know what our sweet little grandson’s experience will be. I’ve read lots about autism, pretty much everything I can get my hands on; I listen and ask questions of his parents. And what I’ve learned is to expect the unexpected. The things that worked yesterday (or the last time that we were together) don’t always work today. Regression can occur and expectations have to be adjusted. But at the end of every day, the little boy who lies down and sings himself to sleep is, I believe, a gift from God, fearfully and wonderfully created.

May we ever grow in compassion and joy for every life.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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5 Things I Want Everyone to Know for Autism Awareness Month

Hi Everyone! This is Andrew Levin, Production Intern at The Mighty. In honor of Autism Awareness Month, here are 5 things I want everyone to know about autism.

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Jim Lichtenstein's Act of Kindness for My Son With Autism Made Me Want to Cry

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The Henry Ford Museum/Greenfield Village complex in Dearborn, Michigan, has been a large part of the growth of my son with autism. When CBS started producing a show there, my son and I were excited. I started stalking @cbsinnovationtv on Instagram. We enjoyed looking at behind-the-scenes photos on Instagram and watching the show. Perhaps someday we’d get a chance to see them record live.

Well, last July the crew spent time taping at the complex, so off we went on an adventure to stalk, I mean watch, them tape. After some paparazzi-like behavior, we finally found a spot to watch the recording. It was fun, but we couldn’t get close enough to hear well, and we eventually had to go. I left them a comment on Instagram that we got to see them but couldn’t stay long enough to introduce ourselves. 

CBS producer Jim Lichtenstein replied that they’d be back in September and to look for him and say hi. You bet your bottom dollar I’d do just that! In September I watched the Instagram account to see when Innovation Nation came back to town. This time we found the crew more quickly. In the midst of historical cars, I walked up to Jim Lichtenstein with my boys and introduced myself. He recognized me from Instagram. Then the magic began.

First he walked us over and introduced us to Mo Racca, the host. He snapped a picture for us. Then Mo and Jim took time to talk with my son. I tried to contain my excitement for him. What a gift to give a child who has social challenges!

When it was time to start taping again, we dutifully moved over to watch with other spectators. Imagine my surprise when Jim walked over to us, inviting us to stand with him behind the recording table. My son the gadget guy got to watch from behind the monitors and see all the equipment being used.

standing behind the tech table with Jim Lichtenstein

Then Jim started explaining to him how things worked. He took out his producer’s notebook and showed my Aspie the scripts, telling him what happens, etc. I was so touched. The tech-loving boy didn’t seem to be paying attention, but I knew he was listening. I leaned over and explained, “My son has Asperger’s syndrome, which is on the autism spectrum. It may seem like he’s not listening to you, but he is.” Jim didn’t bat an eyelash.

This autism mom almost cried when Jim offered his headphones to my 9-year-old. That is not something you see every day. He allowed my son to listen in, to stand there like one of the crew members, to experience the making of a show he enjoyed watching on TV. 

wearing headphones with Jim Lichtenstein

When the taping session was complete, we followed the crew to the next spot. Unfortunately, it takes much longer than you realize to set up a scene for taping and we had to leave before they started. We walked over to thank Jim and say our goodbyes. Jim opened his notebook, dug out a special laminated crew card, and presented it to my son for a souvenir. I might have fallen into a puddle of tears if we hadn’t been in public. My son walked out of that museum a happy kid. 

son holding crew card from Jim Lichtenstein

I must admit, when I see those “CBS Cares” commercials on TV, I respond rather cynically inside with, “Yeah right. What a bunch of political mumbo jumbo.” But on that day in the Henry Ford Museum, one CBS producer really did care. He reached out to my son and gave him an experience I doubt he’ll ever forget. I know I won’t forget. Thank you, Jim Lichtenstein!

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To Those Who May Question Why We Try Therapies for Our Son With Autism

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I love the autism community. I love the passion, enthusiasm and commitment parents, caregivers and therapists have for the children and adults on the spectrum.

However, I find that same community can be a much-divided one, too. Pick an issue and there seem to be two opposing sides. ABA therapy is good, ABA therapy is bad. A biomedical approach works, a biomedical approach is a waste of time. On any issue, it seems lines are drawn in the sand, and that same enthusiasm and passion can quickly turn into a debate.

Michael Hollenbeck and his sons
Michael and his sons.

Even the most basic issue, such as whether or not to do any therapy, can cause disagreements. Across message boards and at conferences, I have encountered many people who have told me, “Why do any therapy at all? You should just love your child the way they are.”

I’m very fortunate to have a wife who asked the same question I did when our 2-year-old son Cameron was diagnosed with autism: “What do we need to do for our son so he can live on his own terms?” Our family set out on a journey to leave no stone unturned.

During our four years on this journey, we have tried different therapies and different biomedical approaches. Some have been amazing and some haven’t worked at all. There have been a lot of tears and challenges along the way for both my wife and me and our son.

The message I have for people who say, “Stop trying to change your child and love them just the way they are,” is this: It’s not about changing our child, it’s about giving him an opportunity.

My worst fear as a parent of an autistic child is who will take care of my son when my wife and I aren’t able to or when we pass. We don’t want our son to spend what should be the best years of his life living in an institution on someone else’s terms. We want him to live a life where he can support himself, make his own choices and see what this amazing world has to offer.

Of course, none of this is guaranteed, and he may have to live with assistance anyway. Because of some of the therapies we’ve tried, he may grow up being upset at my wife and me. He may grow up and thank us, or the truth may be somewhere in between. Either way, my wife and I can look him in the eye and say, “We did this out of love, so someday you can live the life you want to live and give yourself every opportunity to make choices that make you happy.”

Our son is now 6 and his progress has been amazing. He’s becoming more verbal and social every day. My wife and I feel confident we’re on the right path for our family. Even though some people may disagree with that path, I hope people will come to respect it as much as we respect whatever path others with opposing views choose.

Maybe we have wasted time and money, but one thing for certain is that we aren’t on this journey for change but for opportunity. As the old saying goes, “You don’t love your children because they are bad or they are good. You love them because they’re yours.”

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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For the People Afraid to Ask Questions About My Child With Disabilities

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I recently had a friend tell me she was not sure it was OK to ask me questions about my child who has multiple disabilities. In fact, she told me she wasn’t even sure the right questions to ask to begin with. And it got me thinking…

When we see something we don’t understand or is different we feel compelled to want to know the “why” or the “what happened.” Perhaps it’s part of the survival instinct. So, often times when someone approaches me and says, “What’s wrong with him?” my instinct is to say back, “Rude people are what’s wrong with him.” When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. If someone were to asks, “Why is he making that hooting noise over and over?” I might have absolutely no idea myself in the moment.

bracelet that says just ask

Parents, whether we like it or not, we are the conduit to bridging our children with this
society. Even if one person out of 10 who ask, are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “what’s it to you,” I try “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior you would like to know more about. He has autism and maybe one of us can tell you more.” Pollyanna much? Yes. But I believe it’s the only way we will truly build awareness.

On occasion, people want to ask how they can help. A lot of times people don’t realize we need help. And frankly, many of us have no idea what to say when you ask if you can help. Sometimes we feel our honest requests for help would be too much to ask of a family member or friend. And sometimes people just don’t want to do what you do need… so their perception becomes that you are are not taking their help when they offer up something unuseful. All can serve as barriers to asking the right questions… or giving the right answers for assistance.

People often make assumptions instead of asking at all. A young woman I know asked for advice in a situation about a member of her youth group. This teenager has autism and when the entire group is together she tends to get loud and runs out of the room.  This young woman sighed and said, “She only does it in big groups… attention… We are thinking of ways to let her know that maybe this group isn’t a good fit for her.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.

Let’s face it… it’s uncomfortable to ask about people who are different than we are. We may be curious, afraid of coming off as rude or have misread others cues. We may not want to know the answer; we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable or frankly, some of us… we may just not care.

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it. We may not want to be reminded. We may not want to be rejected.

So, let’s all agree on something: asking and telling can be difficult.

Let’s move past it.

Families like mine… we are the awareness. How you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you.

Follow this journey on Running Through Water.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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