mom and piper

The 'Ah-Ha' Moment I Had When My Child With Autism Cried Over a Lost Blanket

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Today, like every Monday and Tuesday, I picked my daughter Piper up from school to take her to therapy. I’ve grown to love this routine for many reasons. I love the one-on-one time we share in the car. I love how proud she is when she finishes each session with Kate, her speech therapist. More than anything, I cherish the look of elation on her face when she spots me walking toward her. She hugs me with every ounce of love inside of her, and leaves her friends and teachers with a smile, an emphatic wave, and a heartfelt “Goodbye!” She brings light and pure, innocent happiness whenever she goes.

mom and piper

Today, though, something just felt “off” as soon as I laid eyes on her. Almost immediately, guilt set in. A rainstorm had slowed my drive. I was five minutes behind, and instead of sitting in her normal spot by the front entrance, she was with her teacher, loading her friends into the vehicle that takes them home. Her teacher reported that she’d had another fantastic day, but I could see she was hurting. I assumed by being a few minutes late, I had thrown off her routine and had been the cause of her melancholy spirit. She didn’t say goodbye to anyone. She clung to me and stared over my shoulder at the school.

As I carried her towards the car, she let out a whimper I’d never heard before. I stopped walking and attempted to meet her gaze. “I’m sorry, sweetheart,” I said. “Are you sad because you didn’t get to ride home with your friends?”

Her eyes were still fixed on the school. “No. I don’t want that.”

With a heavy heart, I buckled her into her seat. It was when I fastened the last clip that I saw large tears rolling down her cheeks. My sweet child was crying, silently. She looked completely heartbroken. I tried to hide my own heartbreak and once again asked her what was bothering her. Because she still struggles to consistently carry on conversation, her direct response stopped me in my tracks.

“I want my MiMi, and I can’t get her!” (MiMi is her baby blanket, her security.)

Not fully expecting her to further respond, I asked if she had left MiMi in the car with her friends.

“No, Mommy. In Rachel’s room .”

Relief washed over me. I quickly unbuckled her and reassured her. “Come on, P. We’ll go get her.”

We didn’t even reach the door before her teacher rushed up to us and offered her apology for not packing the blanket in her backpack. Another teacher overheard our conversation and offered an apology of her own. She explained to me that when Piper had tried to tell her she needed to take MiMi home, she had mistakenly thought it was just a blanket for rest time and denied her request.

“She really did try to tell me, over and over. She’s a smart little girl. I’m sorry, Piper.” Her apology was heartfelt.

Piper relaxed and offered up the goodbyes she had withheld just moments earlier. My child’s sweet demeanor returned. I got her situated in the car one last time, and we set off to therapy.

While I waited in the therapist’s office I had my “ah-ha” moment.

To many moms, the above exchange might have been received in a whole different way. Instead of feeling guilt over throwing off my child’s schedule, I might have been annoyed that my own timeline had been interrupted. I say this not to pass judgment; I say it because I’ve been that mom in the same type of situation with my older children. In my head, I might have said to myself, “Are you kidding me? We’re running late to begin with, and now we have to go all the way back into the school for a blanket?”

Not this time, though. This time, as I sat there, the significance about what had unfolded at school that afternoon washed over me. That small exchange left me in complete awe of my little girl and all she has accomplished.

Six months ago, a moment like that would have been a complete disaster because six months ago, my daughter could barely communicate basic needs. She would have felt lost and scared without MiMi and would have had no way to let me know. I wouldn’t have realized MiMi wasn’t in her bag. The further away we got from school, the more terror she would have felt. Undoubtedly, it would have quickly turned into a full-on meltdown.

Not long ago, Piper could barely find the words to tell me she was thirsty. Today, we made a true connection, she was able to show me she was upset, and using the words that were trapped inside of her head for so long, she clearly and concisely communicated to me what the problem was. Even more, she had communicated it to her teacher. I can’t even begin to imagine the relief she must have felt.

It’s amazing how empowering an exchange like the one we had today can be. It’s something truly worth celebrating. She’s had to work incredibly hard, hours on end, just to get to this point, and I’m not ashamed to tell the world how proud I am.

When you have a child with autism, like Piper, these are the exact victories that demand to be celebrated. In failing to do so, we would be failing to recognize the hard work and sheer determination of our children. If we didn’t celebrate these breakthroughs, we would be failing to recognize the therapists who dedicate their lives to helping our children find their voices and in turn, change our lives, as well.

There is no shame in making mountains out of molehills. In doing so, we are showing our gratitude and building the confidence of our children, who will undoubtedly move those mountains someday.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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The Day After Your Child's Autism Diagnosis

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son walking from behind Your child is on the autism spectrum. No matter how you try to prepare, even if you already “know,” going through the diagnosis of your child is hard. What does this mean for my child? How is this going to affect our family? Can we afford what he’s going to need? How do I help him? Am I strong enough?

Twice, I’ve sat on that couch and heard an autism diagnosis and twice I’ve stood right where you are today… wondering what the future holds for my child. My first son was diagnosed in 2003. I was a young mother, scared, exhausted and totally ignorant to this word I had only heard in movies and books. Through tears, I remember asking if he would ever get married, graduate from high school, live a “normal” life. They promised me nothing, patted my back and handed me a packet of information. My husband was silent except for an “it’ll be OK,” but I didn’t believe him.

The next few days can only be described as mourning. I mourned the baseball games I thought he’d never play, the first dates I thought he’d never go on, even the words “I love you” that I might never hear. I was sad and angry and hurting. Self-pity and depression had become my closest companions, but 3-year-olds have a way of reminding you that you aren’t the star of this show!

Although friends tried to comfort me and family tried to help, that little boy was the only one who was able to teach me how to get up and breath again. He needed me. The pity party was over because every day after that was his life! So we worked and we prayed and we played and we lived.

It wasn’t the life that I had “dreamed” of, but it was something more amazing than any generic cereal commercial I was hoping for. Progress was slow, but we celebrated every single milestone. Words weren’t annoying; they were gold. Little things became big things. He was the teacher; I was just along for the ride.

There were still hard days, lots of hard days, but doesn’t every parent have hard days? There were tears, happy and sad… sometimes his and sometimes mine. I started dreaming new dreams… big dreams, and though they were different, they were in no way less. I no longer longed for “normal.” I wanted extraordinary. That was the life he deserved.

Looking back today, I wonder if I should have reacted differently. I wonder if I was a “bad mom” for being sad, for wishing his life could have been “easy,” for wanting “normalcy.” I’m still not sure. I don’t think there is a right or wrong way to accept and digest a diagnosis for your child. We are all just parents who want the best for our kids and are doing the very best we can to give them the life they deserve.

So, Mom and Dad, if it’s the day after diagnosis or the 901st day, I want you to know you’re doing an awesome job. I know it’s scary and confusing. I know it feels like nobody else can possibly understand how this feels. But I promise you aren’t alone. I also promise one day you are going to look up at that baby and realize you are the lucky one because they just make us better than we are. I truly believe our kids were created for more, something bigger than we can imagine, to influence the world around them to see differently, to love deeper and to push us out of our boring and tidy comfort zones.

And if you are wondering how I handled that second diagnosis… not much better. Hey, I never claimed to have this all figured out. But if it makes you feel any better the first kid just got his driver’s permit, so yeah things just got real. Remember that life I was feeling so sorry about? Well now it flashes before my eyes every time I get in the car with him! And I must say… it’s kind of amazing.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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When Special Needs Parents Have Unexpected Needs of Their Own

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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.

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

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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

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

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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.

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

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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.

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