Angela Ashton Smith's husband, David, and their daughter, Piper

When Special Needs Parents Have Unexpected Needs of Their Own

Two weeks ago, I kissed my husband, David, goodbye and looked on as two nurses wheeled him back to the operating room for surgery on his spine. Years of being rough on his body through athletics and other adventures had left David with chronic back pain.

In the weeks preceding the surgery, I had watched his quality of life deteriorate as the pain became more persistent and severe. His right leg had become weak; just walking up or down the stairs was causing him to fall. It wasn’t emergency surgery or even altogether unexpected, but everything had unfolded much faster than we had planned.

Angela Ashton Smith’s husband, David, and their daughter, Piper.
Angela’s husband, David, and their daughter, Piper.

As the nurses and David turned the corner towards the unknown, I felt helpless and uneasy. I settled into a seat in the back of the crowded surgical waiting room and gathered my thoughts in an effort to get to the root cause of what was making me feel so overwhelmed.

First, I recognized I was worried about my husband, which was reasonable, given the circumstances. My background as a medical professional in the specialty of pain management afforded me a reasonable amount of knowledge, so while this was major surgery, it wasn’t foreign to me. I knew what to expect physically in terms of his recovery. There had to be something else making me feel so unprepared.

I began to recognize I was carrying a tremendous sense of guilt. This was the first time in months that I’d actually sat down and simply considered David! In the time that had passed since our youngest daughter, Piper, was diagnosed with autism, life had been a steady stream of appointments with specialists, therapy sessions and IEP meetings. I hadn’t failed to consider him out of a lack of empathy. I had just been so busy living life one day to the next that the significance of what he’d been feeling physically had been lost on me. Until his pain became unbearable, I think it had been lost on him, too.

Finally, I realized what was truly terrifying me. It was the uncertainty surrounding the next two months of our lives as parents of a child with special needs. I previously shared a story about how David’s strength made him a catalyst in our family’s journey. Everything we’d accomplished had been the result of teamwork. What would happen, then, with the team captain on the sidelines? I was overcome with fear because I was second-guessing my ability to fill the void during his period of recovery. I was scared I lacked the physical strength to handle Piper’s meltdowns. I was frightened we wouldn’t be able to connect with her emotionally in terms of this transition. How would I reach out and explain to her, in a way she’d understand, why Daddy couldn’t hold her?

Instead of continuing to question my abilities, I resolved to conquer this challenge the way we’ve approached each challenge to date — one day and one situation at a time. We’ve learned through Piper that daily life often doesn’t go as planned. I couldn’t expect this situation to be any different. Ultimately, I gave myself a pep talk, and I felt confident in my resolution that the only way to face uncertainty was to take it in stride.

As I reflect on that day two weeks ago, I see my worries were mostly unfounded. Life hasn’t fallen apart at our feet, and David is recovering well. While I worried Piper would have a hard time adjusting, she’s actually taken to having Daddy here at home after school. He can’t lift her, but he can cuddle, and she’s soaking up every minute of it.

The most valuable lesson I’ve learned is that parents of a child with special needs can sometimes have unexpected needs of their own. We spend so much of our time advocating for our children that we forget they need, more than anything, for us to be at our best. I know this has been difficult for David, physically and emotionally, yet he’s demonstrated, once again, that he has more strength than I may ever truly realize.

We weren’t any more or less prepared for this surgery than we were to be parents of a child with special needs. In that statement lies an important message for all parents alike. You don’t have to be able to predict the future to make it beautiful.

Follow this journey on drivingthestrugglebus.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.


Woman watching Tokyo cityscape from high rise

When I Realized I Didn’t Need to Fit In as a Person on the Autism Spectrum

After I was diagnosed as being on the autism spectrum when I was 15, my entire life began to change. People understood me better. And once I looked into the diagnosis, I understood myself better, too.

The diagnosis came when I was in the middle of high school, and I ended up having to transfer to a school that could better meet my needs. I didn’t graduate with my friends from the old school, which I had grown up with and knew very well. And by the time I entered the new school, I didn’t get much of a chance to form close relationships with the kids there before it was time to graduate.

College didn’t pan out at first. It reminded me of the days I struggled at my old high school. So I waited quite a while before I was ready to return. I just started studying Early Childhood Education in the fall of 2015, but I’m only able to manage one class at a time. It’s a community college, so I’m not living on campus, either. It’s difficult to find people to hang out with, especially when I’m focusing more on my work.

I’ve tried connecting with parents in the autism community. Some are open to hearing from me. I’m so grateful for that. However, I’m not actually a parent. So I’ve found some parents don’t want me to be a part of their groups.

Although I respect the views of others, I find that I can disagree with many others on the autism spectrum. I just seem to have a different opinion. I don’t feel like I fit in well with those groups, either.

For a long time, I have felt like I don’t really fit in anywhere. But then I started to realize that maybe I don’t need to fit in somewhere. Maybe I’m supposed to stand out and go my own way.

I have a job making picture communication icons for a special needs organization. I love it. It’s something I’m capable of, and I know that I’m making a difference. I’m working on my own, but I’m working. I’m also volunteering my time whenever I can. I help out in special needs classrooms, as well as a local sensory friendly program.

I’m not really a part of just one group or organization. I suppose I don’t really need to be. Sure, it’s tough when you choose to go your own way. It’s hard when you don’t feel like you belong. But I suppose that’s what being different is really all about.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

How Doctors Can Make Appointments Better for People on the Autism Spectrum

A reader recently sent me a question about meltdowns. Mary, a healthcare professional, shared that one of her patients had experienced a meltdown while she was working with him and she wanted to know what she could have done to help.

She was worried she had somehow contributed to it.

Meltdowns often stem from overload. Meltdowns are different than temper tantrums because they are generally triggered by something —  sensory, transitions or anxiety, for example  —  and reflect an emotional overload response.

They can appear to take place without warning (because others are not aware of the emotional build-up prior to the meltdown). They can be violent and long-lasting.

In Mary’s situation, the overload could have been from something touching her patient that made him uncomfortable, a persistent unfamiliar sound some might not pay attention to, a strong smell (maybe an antiseptic cleanser), his not knowing what to expect next in an unusual situation, difficulty in being responsive to someone he didn’t know, or some or all of those things combined at the end of a long day.

After explaining to Mary there was likely nothing she could had done to end the meltdown, other than first ask how she could help (which she did), and then quietly support both the child and parent while the meltdown lasted (which she also did), I suggested a few things she could do for her patients on the autism spectrum to help prevent meltdowns.

For example, a visit to the office before the appointment day might be helpful to instill familiarity before the date of the exam appointment.

Other suggestions included:

  • Scheduling appointments for patients on the spectrum for times when there are no other people in the waiting room
  • Not keeping the patient waiting, even for a short period of time  —  if there is paperwork to be done, have it done via mail or email before hand
  • Staff being thoughtful of their sensory impact while the patient is there  —  being aware of the sounds they are making, their movement, the smell of food they just microwaved, wearing perfumes, etc.
  • Reducing or eliminating fluorescent lighting (the flickering and hum can be aggravating)  —  maybe adding some incandescent or LED lamps available to be turned on when patients who need them were there

author's child at doctor After the patient is brought into the exam room, the healthcare professional can:

  • Explain the exam in detail before starting  —  let the patient explore the room, touch things (as appropriate) and ask questions.
  • Ask the patient or parent ahead of time what comforts them (I used to have my son sit in my lap for eye exams to reassure him; at the dentist we sometimes use the lead apron for x-rays as a weighted blanket during exams). Invite them to bring comfort tools and to use them.
  • Take your time  —  some people on the spectrum can sense impatience or being rushed, and it can add to the overload.
  • Ask the patient how they are doing and if they have any questions. Don’t be dissuaded if the patient isn’t verbal  —  many nonverbal people on the spectrum can still communicate very clearly.
  • Wait for an answer  —  use the 8 second rule to allow the patient a chance to engage the speech centers of the brain.

The patient may stim to help manage feelings  —  this is an important self-management tool. Don’t stop them from doing it.

If the stimming interferes with the exam, ask if you can trade off  —  a few minutes of stimming, then a few minutes of exam, then a few minutes of stimming, etc. This cooperative understanding might even reduce the need to stim.

I strongly suggest reaching out to adult patients on the autism spectrum and asking for their advice on how to make their healthcare appointments more comfortable.

Other healthcare professionals who specialize in serving patients on the autism spectrum can also be a resource to learn how they structure their practices, set up their offices and generally support their patients.

What suggestions would you make to healthcare professionals to make appointments better for people on the autism spectrum?

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness?  Check out our Submit a Story page for more about our submission guidelines.

jenga game

The Game I Use to Explain the Challenges of My Son With Autism to Those Who Don't 'Get It'

I was talking to some friends the other night, and we were discussing my son and his autism. They were trying to figure out why Soren knew certain things one day but not the next, or why he would progress in certain areas and fall behind in other areas. I explained in the technical terms, and they didn’t quite understand. So I gave them my best analogy for it, and it seemed to help them understand a lot, and so, I would like to share it in hopes that it may help some of you.

Do you remember the old game Jenga? The one with all the little wooden, rectangular pieces you would stack in a tower, then have to remove one from the bottom and put it at the top without making it fall? You can think of my son like a human Jenga tower. You see, Soren is a very smart boy and is eager to learn. He wants to be able to do all the things his peers and elders do, even if it can be difficult for him. So he will practice and practice until he learns a new “trick.” (That trick may be running, learning how to throw a ball, learning how to make an unscripted sentence, etc.) Then, when he masters this new trick, something else may fall behind, or he might forget things he already knew. This is the metaphorical removing of the lower block and replacing it on top.

And along his way to learning new “tricks,” we encounter lots of meltdowns. Maybe he can’t master the art he’s going for, so he melts down. Maybe he did it incorrectly and someone corrects him, so he melts down. Maybe on the process of learning this new trick, he forgot something important to him that he once knew, so he melts down. These meltdowns are the tower shaking, that heartbreaking, breathtaking moment when you know it’s about to fall, and you panic. Do you try to fix it? Do you let it fall? Or do you sit there and watch as the tower shakes and leans?

Then, after he’s learned so many new things and forgotten so much old information, he can plateau or appear to stop learning anything. This is like the time when the tower falls. You see, all that information has fallen away from him, and he has to shut the world out. Then, he can relearn the things he needs to know in his own time and rebuild his tower, and then the game starts over again.

This may or may not be true for you, but this analogy helped my friends to understand so much more about what it is my son goes through on a regular basis. I only hope this helps someone else to understand as well.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

Why I Write as a Person on the Autism Spectrum

Growing up, I was always writing little poems or stories and even some songs. They weren’t always the best, but I enjoyed it. Writing was fun. It continued to be a creative outlet until one year in high school.

I was still undiagnosed as on the autism spectrum, but the teachers and staff were aware something was different. Everyone — except for my English teacher — realized I was beginning to struggle. This person just didn’t get it. I was so intimidated. Instead of learning, I began to fear writing.

In fact, I stopped writing. I stopped enjoying it. Every time I went to type, the page remained blank. I would see red marks all over every paper, picking apart each error until there was nothing left of my own but my name at the top.

I eventually got through this class but not without scars. I continued to dread writing. I saw it as a chore and something I was “obviously” incapable of.

Then I was officially diagnosed as being on the autism spectrum. And although at first I didn’t really think much of it (I hadn’t changed), I noticed others began to understand me more. They began to listen when I tried to tell them I needed help with things. I looked into more of what autism was about and something clicked. I wanted to help people understand what my life was like as someone on the spectrum.

Finally, after a few years of being afraid to write, I was about to explode inside with all of my thoughts and feelings about autism that had been building up. I went to my computer and created a website. Then, I decided to make it a blog. At first, I was worried I would make mistakes or it wouldn’t be “good enough.” But my writing didn’t have to be perfect like my teacher had wanted it to be. It just had to help people. I started to write about what my life on the spectrum was like. I continued this blog for about two years… and then turned it into a book.

Erin with her book, 'I Have Asperger's'

I am a writer. I may not write in the way my teacher had wanted me to, but that doesn’t mean I can’t write. I’m a published author. And the best part is that I use my writing to help people.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

Kathy Hooven’s son, Ryan.

When My Son With Autism Said, ‘I’m Not Very Good With Words’

My son Ryan is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain.

These files of his seem to be scattered in no particular order, which makes retrieving the information within the files an arduous task. More often than not, he gives up, but on this day, he kept searching. As the words scrambled and cluttered on his tongue, I reminded him to take his time and that I wasn’t going anywhere.

Kathy Hooven’s son, Ryan.
Kathy Hooven’s son, Ryan.

Ryan finally found the school file and shared what happened in school with me. Then, exasperated by his efforts, he looked out the window and sighed, “I’m not very good with words.”

I quickly assured him he’s awesome with words. I reminded him how amazing his brain is and how he can find the right words from a movie, television show or YouTube video and make those words fit just the right conversation.

I told Ryan that although my brain files seem to be more orderly and “words” seem to come more easily for me, my brain can barely remember what I ate for breakfast that morning, let alone repeating the perfect phrase (or script as we like to call it) for a conversation.

We’re both good with words in our own unique way.

Ryan didn’t look convinced. I wanted him to understand that even though he may have heard those words somewhere else, they’re still his words and part of the way he communicates, and he is indeed good with words. So I gave him some perfectly awesome examples.

I asked him if he remembered when we were driving around Grammy and Pappy’s town, looking at all the old Victorian-era mansions, and I was “oohing and ahhing” about the size, and in his best Shrek voice, he said, “Sure, it’s big enough but look at the location.” We all laughed until we cried (him included). His words were so good that I almost wrecked the car into one of those Victorian mansion’s fences, which wouldn’t have decreased the value of the mansion since, according to Ryan (and Shrek), it’s all about location, location, location.

He smiled. A little.

Then I reminded him about the time we were eating dinner and asked him if he liked the cake I made for dessert. In his near perfect Cousin Eddie impersonation from “Christmas Vacation,” he shouted, “This is goooooood!” Again, he finds just the right words at just the right time.

He smiled again. Bigger.

I asked him about the time at the beach when we couldn’t decide where to eat dinner, and we wondered what he wanted to eat. Suddenly, Jim Carrey’s Fire Marshall Bill character was in the car with a “He’s cooking fishsticks!” quote. And then we knew just what you wanted to eat. Those were good words that made us all giggle.

He laughed. Quietly.

My favorite was when we saw a rainbow and my daughter Emma said, “Water plus sun equals a rainbow.” And Ryan piped up and replied, Rainbows are a result of refraction of moisture and light in the air,” sounding just like his favorite cartoon character at the time, Gumball. Those words were so good that Emma and I had no words, which never happens.

He laughed. Louder.

And then I reminded him of something he was too little to remember. Once when we were snuggling in his bed, he wrapped his arms around me and told these words that were so good they went straight from my ears to my heart: “I wish you were a human who could live a thousand years.” Those were his words, and they were beautiful. You are good with words, Ryan.

He grew silent. Again.

Worried I hadn’t proved my point, I continued with more and more examples of times he was good with words and how those words — those scripts — were his way of communicating and that my words are no better, no more effective, than his.

Ryan perked up. He sat up higher in his seat. Then suddenly, it seemed as though his brain files had order. Ryan gave me this script and that script. He used this voice and that voice. He smiled. He laughed. He believed.

As we approached the house, knowing the ride and this conversation were quickly coming to an end, Ryan never said, “Thanks, Mom. You’re right, in my own way, I am good with words.” But he didn’t need to because his smile and his Fire Marshall Bill voice as he opened the door and yelled, “Let me tell you something,” said it all.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.