Cathy B. with her son, Dominic.

3 Words That Helped Me When I Thought I Let My Son With Autism Down

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I got lost heading back home from a meeting recently. It would have been fine, except I had to be home to meet my son Dominic when the school bus dropped him off. I thought about calling my husband, the bus company or one of my friends to help me, but in my mind I thought I could make it home before Dominic.

I knew the bus driver wouldn’t leave him at our house alone because I signed a form at the beginning of the school year saying we wouldn’t permit that.

Cathy B. with her son, Dominic.
Cathy B. with her son, Dominic, who has been riding the bus since he was 3 as seen in this photo. He’s now almost 12.

But what if it was a different driver and he didn’t know to do that? What if the driver didn’t know Dominic is on the autism spectrum and has epilepsy? The feeling of fear was beginning to set in as I continued to drive towards our house. I didn’t have the bus company’s phone number or the bus driver’s cell phone number. I could have stopped on the side of the road to look it up, but again, in my mind, I thought I could beat the bus home.

When I got home, it was a full 10 minutes past the time Dominic is normally dropped off. Neither Dominic nor the bus were at our house. Now panic started to set in. For a split moment, I had no clue where he was. Oh my, that was a feeling I hope to never have again. I ran inside and checked on my home phone for a message from the bus company or the driver, but there wasn’t one.

I immediately picked up the phone, called the bus company and they said, “Is your son’s name Dominic?” I said, “Yes.” They told me the bus driver kept Dominic with her as she finished her bus route and would drop him off momentarily. Whew. I was shaking and had to sit down. As the bus pulled up and Dominic stepped off, all I could do was profusely apologize to the bus driver and tell Dominic, “I’m sorry, I’m sorry.”

I was beyond distraught. I felt like I had let my son down. I spent the next several hours rehashing the event in my head. What kind of mom was I to not have been there for my son with special needs? What kind of mom does that?

During my regular evening conversation with my dad, I kept telling him about what had transpired with the bus. After about 10 minutes, my dad said, “You’re only human.” Wow, that certainly helped me put everything back in perspective.

I try so hard every day to be everything to everybody that I don’t always cut myself enough slack to make mistakes. Just those three words, “You’re only human,” helped me realize I could forgive myself. It’s OK not to be perfect.

Sometimes as a caregiver, it’s hard to step outside of ourselves and realize that, yes, we’re doing a great job, and once in a while, things like not being there for your child’s bus may happen. It doesn’t mean you don’t love or care any less about your children with special needs. It means you’re human.

Follow this journey on Bountiful Plate.

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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What I Want My Doctors to Know as Someone on the Autism Spectrum

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Dear doctors and medical professionals,

There are some things I wish you knew. I have autism. This can make some things more difficult for me. Change, waiting and communicating can be difficult — just to name a few. The medical setting can be intimidating for anyone, but as an individual with autism, I might find it to be even more intimidating sometimes. There’s just so much going on, so many people, etc.

I’ve found that some people in the medical world don’t always understand me or my autism. They don’t quite know what to do, or how to do it; it’s a learning experience for them, too. Autism may be unknown for those not on the spectrum, and anything unknown can be scary. Like my amazing doctor explained to me today, “It kind of makes them anxious and can be anxiety-provoking, similar to how you experience anxiety.” I thought about what Dr. Ann said, and it stuck with me, it made so much sense; yet it still disappoints me that there’s still so much work to be done when it comes to teaching others about autism. But I don’t stay disappointed for too long; I use it as an opportunity to make a difference and a reason to teach others.

Here are some things that I would tell medical professionals:

Please treat me like a person, like you want to be treated. See me for who I am. See my autism as a part of me but not all of me. Support me, but please don’t judge me.

Think about what it’s like in my shoes, and how scary the hospital or doctor’s office can be. Communicating how my body feels has always been difficult for me. When asked if something hurts or how it feels, I may reply I don’t know. It’s just so hard to put my body’s feelings into words. Be patient, give me extra time to type on my iPad. Please don’t rush me.

My parents and caregivers are often my interpreters. Please listen to them. Please don’t argue with them. They simply want what is best for me. Please help us figure out what’s wrong together as a team.

Please, try to connect with me. Try to help me. If you are unsure, ask. Please don’t give up on me.

I can teach you a lot as we travel along the medical journey. Sometimes it may not be easy, but it is rewarding. You will likely look back and know you made a difference. You might learn that I taught and helped you as much as you taught and helped me. Please know I’m grateful. I’m thankful, and I appreciate those who go the extra mile. You matter, you make a difference in my life. Thank you for being a part of a medical family I never expected to have.

Thank you Dr. Ann, and the rest of the clinic staff who have truly connected with me and helped me in so many ways. Thank you, from the bottom of my heart. Together we will teach others that anything is possible.

a woman with her doctor and two other members of her medical team
Chloe and her medical team.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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When My Father Finally Accepted That I Have Autism

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I was first diagnosed with autism nearly four years ago at the age of 22. I started to figure it out when I was about 14. That was when I realized I had been having trouble in school the past few years, although not academically. I identified eye contact as difficult and uncomfortable and began to realize how much I disliked being touched. I realized how much I was bothered by little sounds that no one else seemed to notice. I remember going to a brand new high school and saying that the lights were loud and no one voiced their agreement. I remember the stress I would feel when the bell would go off to switch classes. It wasn’t the bell that bothered me as much as the impending overwhelming walk through the hallways that would take me most of the next class to recover from.

It didn’t get better in college. With stress, my symptoms and experiences continued to intensify. Away from the comforts of home and small-town family connections, I struggled. I remember taking one of those Facebook quizzes. It was something like, “Are you autistic?” I scored very high. I would get so anxious with the start of a new semester because of the new routine that came with it. I loved my routine and hated any change that came. About the time I would get used to my new routine, it would be a new semester. I’d sit in a corner and rock for as long as I could.

Finally, after I graduated college, my new psychiatrist mentioned autism. I did more in-depth research and realized that I identified strongly with this diagnosis, as opposed to some of the others I had been given.

A few months ago, I met a new psychologist who put me through a battery of tests to confirm the autism diagnosis. It was confirmed along with a couple other diagnoses.

In the two years between my first diagnosis and my confirmed diagnosis, my parents said very little on the subject. Despite my identification with and acceptance of the diagnosis and my siblings’ acceptance of autism, my parents seemed to disagree. Even after my mom met the new psychologist, I got the same vibe. A couple weeks ago, my dad called after attending a continuing education session on autism. He said he was sorry.

He said that he got it and that he was sorry they had missed it but that he saw it now. He said he wished they had been able to provide the appropriate support that I needed. He also said that he was even more proud of me now that he understood I was autistic, because of everything I had done without the help of my parents.

When I hung up the phone after talking to my dad, I cried for a while. I don’t cry often, but I could do nothing else with the overwhelming relief I felt knowing that my dad finally got it. My dad agrees with the diagnosis now. He accepts my autism diagnosis and loves and accepts me for who I am. He is proud of me. Since that phone call, I have felt so much lighter. I didn’t realize the weight I was carrying as a result of my parents’ lack of acceptance.

So for others with autism looking for your parents’ acceptance: Don’t give up. Be you, believe in yourself, and believe that you are deserving of the support and accommodation you need to make it through the daily demands of this foreign world.

For parents who don’t believe their child or adult child has autism: Listen to your child first and the medical professionals second. You may think that you are the only expert on your child, but the reality is that your child might be the expert, and you the invaluable assistant. Your child has likely felt your disapproval and has certainly felt a lack of belonging in this world. There is no shame in an autism diagnosis. Your child wants nothing more than your love, acceptance and support.

Follow this journey on Erinmmckinney.com.

Lead photo source: Thinkstock Images

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A Child Doesn't Need Words to Say 'I Love You'

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Another Mother’s Day has come and gone. My children have long-since drifted off to sleep, and I’m quietly reflecting on the many ways they brought joy to me today. Some of this joy was the result of intentional acts of kindness, including a beautiful bracelet made by my oldest daughter, and a heartwarming “All About Mom” book, filled in by my kindergarten-aged son. These were gifts that my children made in advance and gave to me with great anticipation. They knew it was to be a special day for me. From the moment their feet hit the floor, they were active participants on a mission to make Mom feel extra-loved! Their mission was a great success, and I took every opportunity I had to let them know it.

My youngest daughter, on the other hand, didn’t appear to understand it was Mother’s Day. She’s 3 years old and on the autism spectrum. To her, it was probably just another day. Still, she, too, managed to make me feel loved beyond measure.

There are so many ways in which every child on the autism spectrum, verbal or nonverbal, is capable of saying “I love you.” What they need is for us to realize that we can listen with more than just our ears!

Many moms of other children with autism have opened up to me and have shared their stories. I’ve heard the heartbreak in their words as they have described how it feels to know they may never hear the voices of their nonverbal children. It’s humbling, to say the least. I’m incredibly grateful that I have heard my little girl’s voice say, “Goodnight! I love you!” From those mothers, I have learned that children with autism can express love in a multitude of ways, often without ever uttering a word.

When a child with autism has a great day, socially, yet breaks down the moment she is in the safety of her own home, she may be saying, “I love you enough to let you see this. I feel safe with you.”

When that same child clings to you and sobs over the most seemingly trivial change in routine, she may be showing that she recognizes security in you. She isn’t just being difficult or finicky. She can be saying, “I love you, and I’m not letting go, because right now, you’re the only one who I know can make it better.”

When a child with autism smacks you in the face as you pretend to cry during play, he isn’t being cruel. He can be expressing distress over seeing you distraught. He can be saying, “I love you, and I can’t stand to see you sad, Mommy.”

Yes, my daughter can speak, but she also does each of the things mentioned above. Instead of being hurt by her behavior, I’ve learned that I need to look beyond the surface and listen to what she’s telling me with her actions. They’re all rooted in love. This is not always easy to do. I’m far from perfect and often become frustrated during these outbursts, but I am learning to hear the things she’s not saying in times like these.

On Mother’s Day, her actions said “I love you” incrementally louder than any words she’s ever spoken. I put a different spin on Mother’s Day, this year. Since my children are what make me me “Mommy,” I gave each of them a gift — a small wooden photo of them with me. At bedtime, I found my youngest daughter in her bed, snuggling with hers.

In so many situations, you can feel an overwhelming expression of love without having to hear it expressed verbally. There is no greater feeling than looking at my little girl and knowing that I am loved and adored, just for being me.

young girl lying in bed looking at frame photo of her with her mother
Angela’s youngest daughter.

Follow this journey on drivingthestrugglebus.

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When My Son With Autism Melted Down on a Plane, We Got a Surprise Ending

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I did not see this coming. I should have, but everything had been going so well. I was not prepared for it. We had just found our seats, and I was already mentally organizing our bags and figuring out what needed to go in the overhead lockers and what I needed to take out for use during the trip. Our seats were the four middle ones, nowhere near a window like on the last flight. His meltdown started. My son was screaming, kicking, hitting and doing everything he could to get away. I dropped everything I was holding and focused on confining him to the small space of our seats. I was struggling to hold on. He may be a skinny kid, but he is strong.

I call them “Bugatti meltdowns.” They go from zero to roaring past you at full speed leaving you wondering what just happened. Then you realize you have to catch and calm them.

My immediate thought was that we were going to be kicked off the plane. My biggest fear in planning this trip was suddenly looming over us.

A few weeks before, I’d seen the news about a girl with autism and her family allegedly being kicked out of a United Airlines flight. Being our first trip on an airplane with our boys, who are also on the autism spectrum, I was really afraid of the same thing happening to us. Especially since we had six flights to take. Six chances to get booted off. At least the family on the news was flying within the U.S. We were a continent away from home and still one more continent and yet another flight from our final destination.

One passenger walking past interrupted my thoughts by yelling even louder than my son, enough that everybody could hear: “You should know better, you are old enough.” The woman sitting behind us laughed and nodded in agreement. The mother bear in me wished I could let go of my son and tear into them for being so ignorant and judgmental. I could feel the anger rising from my belly.

That momentary focus on the two passengers and my own anger gave my son just enough leverage to shove me backwards into the aisle, smacking onto the man shuffling past. He responded by spewing F bombs and other profanities. I’m not sure if they were directed at me; it could have been just how he responds to everything, but each one landed on me like a guided missile. I felt angry and deflated.

I saw the flight attendant talking to my husband, no doubt telling him we would have to get off the plane. We couldn’t possibly expect go through the next 12 hours with our son screaming like that. I accepted our being kicked off as the inevitable ending, but until the police escort arrived, I had to focus on one thing, helping my son calm down. The only way I could do that would be to calm myself down first. I’ve had plenty of practice getting meltdowns under control over the last eight years. I have a method that works well. I simply had to trust it would work on an airplane too.

I took a couple of deep calming breaths and continued to focus on my breathing while I escaped to my paradise — my beautiful beach where I could no longer hear the rude remarks of fellow passengers and not feel the fear of our impending ejection from the airplane. I needed to focus on my son who desperately needed me. He had lost complete control and needed my help to get out of the storm he was swept up in. I went from barely hanging on to him to hugging him tightly and finally to having him sit on my lap while I rocked him. The tears and the sobbing finally ended. The storm of the meltdown had gone on for “hours,” but the end was finally in sight.

By the time the flight attendants started their familiar mime of the onboard safety rules, pointing out the emergency lighting and doors, my son was fast asleep. He slept for almost 10 hours.

I learned from my husband that during the meltdown, comments from many of our fellow passengers suggested they couldn’t wait to see London’s bobbies escort us off the plane.

I also learned the flight attendant I had been so sure had already given the bobbies a call, had actually been working on a plan to move us to window seats once boarding had completed. This meant four strangers had agreed to give up their seats for us so my son would be more comfortable. In addition, when we landed several hours later, a kind grandmother who had been seated close to us stopped to chat. After confirming that my son has special needs, she was particularly concerned about his education. She wanted to know if we had managed to find a good school for him because he needed a school where people would understand him. Only after she heard that he was indeed in a good school did she gather her belongings and leave the plane.

My son’s meltdown in an airplane did not get us kicked off the flight; instead it moved complete strangers to acts of kindness. They did what they could to show us their support and humanity.

This experience was a reminder that I need to trust myself more. I actually sometimes know what I’m doing on the parenting front. And for all the judgmental people out there, there are some who are accepting and supportive. They are the only ones I have to focus on, the rainbows in whatever storm I may find my family caught up in. To all the rainbows out there, thank you!

The Mighty is asking the following: Describe a moment you were traveling that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. 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 It's Like to Deal With Eating Issues as Someone on the Autism Spectrum

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Some people say that when a person is hungry enough, they will eat. But this statement is not true for me. I am on the autism spectrum myself, and I have had an issue with healthy eating habits my whole life. I take a multi-vitamin daily. But I also try to find healthy foods that taste good. For example, breakfast drink powders, or juice instead of soda. Also, I’ve noticed that the more I’m around food that is cooking, and the more I smell the food, the more I’m willing to try eating it. However, when I’m stressed out, I find it very difficult (sometimes impossible) to eat. It’s easier to sip a drink than it is to chew and swallow an entire meal. It literally hurts to put food in my mouth at these times. Both my mouth and my stomach hurt. My jaw tenses up, along with the rest of my body. And if I try to swallow, I may gag or even throw up.

I was definitely more restricted as a child. As I have gotten older, I find I have tried more foods — but it has been a very slow process. As I said before, when people cook foods I know I’m not going to be forced to eat, I’m much more willing to try them because I smell the foods cooking around me. However, forcing me to eat foods is a very traumatizing experience. I would honestly rather not eat than eat foods that I don’t like. I have nearly passed out because of that. No, I don’t like feeling that way. But it’s still better than putting foods in my mouth that I don’t like.

It’s not that I don’t want to eat healthier foods. It’s that it can hurt to do so. Forcing me to eat something that hurts me is only going to traumatize my eating experiences and make me want to eat less. Again, as strange as it sounds and as hard as it is to believe or relate to, I’d rather pass out from hunger than eat something that hurts me to eat it.

What helps me is to have people always offer foods and cook foods that are better options (but not the only option!) just in case. One day I may surprise you and ask for a bite! But I appreciate so much that my parents respect the fact that I literally can’t eat some foods.

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.

Lead photo source: Thinkstock Images

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