Finding the Joy in Routine as the Mom of a Teenager With Autism

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Most days we manage to stay on task and in the moment. We get up, brush our teeth, find or don’t find our shoes and clothes and favorite hat. We catch the bus and the carpool, go our separate ways for a few hours, and regroup for the afternoon’s festivities of snacks, sports, homework, dinner, showers (maybe), sleep and the dream of doing it all over again.

It’s our very own version of the movie “Groundhog Day,” in which Bill Murray gets stuck repeating the same day over and over again. But for our family of four kids and a dog, as long as we stick to the schedule and no one gets hurt, I have come to realize Groundhog Day has its perks.

Many parents will report that kids thrive on a predictable routine. As a parent of a teenager with autism, I know some kids take “routine” to a whole other level.

In our kitchen we have a dry-erase board, and every night at my daughter Erin’s prompting, I write the schedule for the next day. She smiles and claps her hands in delight as I record what time the bus will arrive, what time it will deliver her home, what classes or activities lay in store, will there be visitors or guests, will there be a trip to the library or CVS or the grocery store. A regular routine brings comfort and joy — and there is magic in the mundane.

I’m not a planner by nature. In fact, in my former life there was nothing I relished more than a day that held nothing more than possibility. Erin, 14, and her younger brothers to an extent, have conditioned me to understand and embrace the merits of routine, and have taught me how tricky life can be when we veer off course.

While other kids celebrate a snow or vacation day, Erin, and I by extension, grow anxious. I frantically scribble a list of the minutiae: wake up, feed Pablo (the dog), eat breakfast, brush our teeth, watch a show, read a book, go for a walk, bake cookies. I insert a lot of smiley faces throughout in an effort to reassure this uncharted terrain is OK, it is manageable and we will get through.

But unavoidable are the days and moments that defy routine and my smiley faces.

Last night, the boys brought up “the future.”

mom and daughter hugging each other
Eileen and her daughter Erin

In some families, I imagine this is an easy topic. Kids everywhere like to ponder: Where will I live? Who will I be? But in our home, this line of hypothetical questioning inevitably leads to shaky ground.

While there’s a possibility my son Jay may not ever play in the NBA, there’s also a possibility that Erin will never live independently. With the boys I feel confident in my hopes that they will one day find a job and friends and live on their own or with someone who loves them. Erin — I don’t know and I have no real answers to her brothers’ questions: Who will she live with? Who will take care of her? Will they be nice to her?

She will be safe and happy and cared for,” I tell them — but I don’t know if this is true.

What I do know is what Erin asks me to see and to celebrate every day: the sun comes up, the sun goes down and in between we have a day.

We have our routine. We have our dry erase board. It keeps us in check and keeps us contained. Thankfully, there is space for so much: four kids, one dog, one mom, one day. Let’s stick to today. And repeat. Repeat. Repeat.

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 community@themighty.com. 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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The Question That’s Helped Me Over the Years as a Special Needs Mom

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Years ago, when my oldest two were around 5 and 2 years old, my good friend and old college roommate came to California with one of her sisters to visit. They live in Tennessee, so it was a real treat to have them. We met up at a nearby mall and walked around, me with my two kids in a double stroller, talking and enjoying being together.

At lunch time, we headed to the food court to eat. After sitting down, my good friend, who knew a little about my daughter’s recent autism diagnosis, asked me how she was doing. Next, she looked me right in the eyes sternly and I’ll never forget what she asked:

“OK. But how are you doing will all of this?”

The autism diagnosis was still so new to our family. I didn’t talk about it much because I was still trying to come to terms with it. It was the first time one of my own friends had really wanted to know how I was doing with all of this. I can still picture myself sitting there at the booth next to my kids in the stroller, eating some food court item like corn dogs or soft pretzels. I remember my friend staring into my eyes for a response. Though we hadn’t seen each other in a few years, she knew me. She really wanted to know how I felt, and I honestly didn’t know what to say. But I knew it was something I needed to process. I don’t remember what I responded, but it probably went like this:

“I’m not sure yet. I’m still trying to figure that out. It’s been an emotional time and I’m still coping. I don’t know what the future holds. That’s probably the hardest part. Not knowing how far she can go or what she will accomplish, and also knowing that how far she does go largely depends on what help I’m able to get her and how dedicated I am to this. Everything is up in the air.”

She’s not a special needs parent like me. But she was a new parent. And she sensed that I needed to talk about what I was facing, and I don’t think I even realized I did. Sometimes just talking to a person is what helps you realize where you need more strength.

When is the last time you have sat down, in person, with someone, and they have asked you how you are doing with everything? And they really meant it? How did it make you feel? Did you feel better after talking about it? When is the last time you asked someone the same question, and really meant it?

I know that talking to people over the years, on the phone or in person, about the challenges I’ve faced has been a lifesaver. Keeping it all inside was not an option for me. Talking helped me get through the trying years I’ve faced. And now writing has connected me with even more great support. Talk about it — with a friend, a therapist, a doctor, a family member, your child’s therapist, anyone who is willing to listen. It’s important that you know how you are doing, too. Sometimes you don’t know until you let it all come out.

Two friends with baby

Follow this journey on The Special Reds.

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16 People With Autism Describe Why Eye Contact Can Be Difficult

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For some people on the autism spectrum, making eye contact can be a stressful, distracting and sensory-taxing experience. Far too often, though, outsiders view avoiding eye contact as “rude” or “antisocial,” when this isn’t the case at all.

In an effort to better understand how this experience feels for many on the spectrum, The Mighty asked our readers with autism who find eye contact difficult to share a description of what it’s like.

This is what they had to say: 

1. “It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It’s a constant stream of extra sensory or processing information on top of what I’m already trying to sort through in my head. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

Quote from Laura Spoerl that says, "Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded."

2. “My eyes take pictures of the things I see, and I can mentally go back and revisit these pictures in my mind for a very long time. If I look into your eyes for too long, I become overcome with so many pictures of your eyes. It is overwhelming, and I have to look away to give my mind something else to process.” — Sydney Brown

3. “It’s just feels yucky.” — Tom Bowes

Quote from Tom Bowes that says, "It's just feels yucky."

4. “To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety. It’s just too much pressure, and I can’t keep eye contact for very long unless it’s with someone I trust… But despite how my eyes may wander, or if I’m even looking in another direction, make no mistake; I am still listening, and I am still interested in what you have to say.” — Emma Wozny

5. “It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. My trick for making eye contact more bearable is to make ‘eye contact’ with peoples’ eyebrows. Nobody ever knows the difference.” — Megan Klein

Quote from Megan Klein that says, "It can feel like you're standing there naked."

6. “As a child, I didn’t give any eye contact at all, but I now give it (or let people believe I’m giving it) in certain situations but not in others. If I’m stressed about something, I likely won’t be giving any eye contact, and in general I’m not a fan of it. It’s hard to explain why eye contact is difficult, but a lot of the time it feels spooky. It feels as though someone is looking right into your very soul. That’s why it used to be absolutely unbearable and still is in certain circumstances.” — Alex Lowery speaks about autism Facebook page

Quote from Alex Lowery that says, "A lot of the time it feels spooky. It feels as though someone is looking right into your very soul."

7. “For me, it’s difficult because I feel like the person I’m making eye contact with may be able to see just how socially awkward and odd I am. I force myself to make eye contact when speaking to a person, but it can actually make my eyes burn or water while doing it.” — Jill Toler

Quote from Jill Toler that says, "It's difficult because I feel like the person I'm making eye contact with may be able to see just how socially awkward and odd I am."

8. “When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

Quote from Lucy Clapham that says, "When I make eye contact, the world around me blocks out."

9. “I find direct eye contact too confrontational, and I don’t handle confrontation well.” — Liz Stanley

10. “It’s sometimes physically painful trying to maintain a constant stare straight into someone else’s eyes. It does not mean I’m not listening or have something against the person talking to me, it’s just an uncontrollable struggle to maintain eye contact.” — Chris Amor

A quote from Chris Amor that says, "It's sometimes physically painful trying to maintain a constant stare straight into someone else's eyes."

11. “If I try to look at you when I’m trying to say something I have a hard time getting what I want to say out because I can’t separate the processing that takes place with both tasks.” — Nell Rus

12. “For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

Quote from Rosie Howard that says, "It feels like burning with too many emotions, and I just can't take it in all at once."

13. “There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird, told The Mighty in an email

14. “It is a very uncomfortable feeling. It feels like a threat, like an invasion. I find it much easier to make some contact with people I am familiar with.” — Deidra Tucker

A quote from Deidra Tucker that says, "It feels like a threat, like an invasion."

15. “Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney told The Mighty in an email

16. “For me, it just feels unnatural.” — Emilyanne Wachter

Quote from Emilyanne Wachter that says, "For me, it just feels unnatural."

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The 3 Words I Wish I Could've Told My Parents When I Was Nonverbal

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The day my parents were told I had autism was one of the scariest days of their lives — not because I wasn’t capable of doing amazing things in this world, but because of the uncertainty that an autism diagnosis can bring to families.

My journey with autism started when I was 2 and a half. I was nonverbal. There was no explanation for why I hadn’t spoken yet. Some of my earliest memories are of my parents trying to get me diagnosed.

While my parents took the initiative to find out more about what was going on with me, I would lash out because I couldn’t communicate my needs to my family and friends. Coupled with the onset of extreme sensory issues, it was one of the scarier times of my life.

I look back at that kid, completely terrified of where the world was going to take him. For so long I thought about what that experience meant to me. I rarely thought about what it meant to my parents. After knowing my parents now for 28 years of my life, I can tell you they’ve loved me unconditionally every single day of my life.

Looking back now, there is something I wish I could have told them. While I lashed out when someone would try to touch me, or when it started raining and I felt the water on my skin, I’d act out, most of the time toward my parents.

I wish just once while this was happening, I could have said to my parents these three simple words:

“I love you.”

Today, because of my parent’s love for me, I’ve been able to overcome most of my sensory issues. I no longer have any sensory overloads, and I travel across the country as a national motivational speaker who one day hopes to learn a second language to boot.

Now when I think of my childhood, I thank them for everything they’ve done and continue to do for my life. Their love has made me a better and stronger person today. It has made me not only able to tell them how much I love them but countless times how much I love my family and friends as well.

My one hope in the future is to start a family where I can tell them these exact same words every single day.

For those reading this, I hope you know about the impact you have in your child’s development. You are their best advocates. Tell them how much you love them every single day.

Baby looking to the side

A version of this post originally appeared on Kerrymagro.com.

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5 Ways Our Family Has Learned to Navigate Life on the Spectrum

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Nothing prepared me for the first time the word “autism” was mentioned during my daughter’s second year of preschool. I realized she was dealing with some challenges, but this meant she would need support in school. Over time, however, we have learned that just because her needs are not the same as those of her peers, that doesn’t mean her life experience is any less valid. It doesn’t mean we have to put our plans on hold. We have learned to dance the dance of autism.

When our daughter was 4, we began sailing during the summer. We lived aboard a 29-foot boat and cruised the Great Lakes for 93 days. Armed with her iPad for use during long runs and her much-needed quiet time, she could enjoy every day of our journey. Ultimately, we were able to adapt our drive down to Houston, and this dance has continued into our life on the marina, where we live aboard full-time. Life is structured with a predictable routine consisting of homework, piano practice, quiet time, reading to therapy dogs at the library and even special needs competitive cheer.

Autism can have its challenges — I’m certainly not trying to minimize that. But it does not have to seem like a roadblock. Here are some ways we navigate life on the spectrum.

1. We’re mindful of our daughter’s tendencies.

We know our daughter needs a somewhat predictable routine and she needs downtime between her adventures. For example, when we go on vacation, we know we will not be able to pack our day with sightseeing excursions. We will do one activity, then retire to our hotel room for a couple hours before going out again.

2. We take advantage of school resources.

Our daughter enjoys school, and we have encouraged her to become involved in school activities. She formed a strong relationship with her music teacher and joined a keyboard class after school. The teacher knew our daughter well enough that she suggested she join the older kids’ beginner class because it is quieter. We take her to after-school family nights and encourage her to make projects for after-school activities. She created a Pokemon stage for her school’s “Cardboard Carnival.” It was uniquely hers and she was proud of it.

kids practicing cheerleading pyramid
Bethany’s daughter practicing cheerleading.

3. We don’t shy away from opportunities to socialize with friends.

We always encourage our daughter to see her friends after school. She always has a good time and her friends are very accepting. Often, she needs to take a break by herself during a party, and one time she spent the entire party inside the bounce house!

4. We also participate in activities for children with special needs.

I remember when we attended our first sensory-friendly movie. Our daughter was able to sit through the movie without covering her ears, and the low-pressure atmosphere allowed me to relax. Our daughter participates in special needs competitive cheer and has attended a special needs princess ball. Next weekend, she and I will spend two nights sleeping in a cabin at Camp Be an Angel, and in August our family will spend a weekend at an autism resort. The special needs community can be a tremendous source of support, and it is a chance for our daughter to participate in activities that are ordinarily less accessible and to develop strong friendships with kids who share her interests and experiences.

5. We’ve learned to let go of comparisons.

The reality is that all kids face challenges, and there is no mold into which every human being must fit. Yes, we have friends whose children talk more than our daughter and may not need sensory breaks. These kids may be able to sit for hours in a desk in a classroom, but they, too, will eventually have to make decisions about their lives  and they have no more of a guarantee of an easy ride than our daughter does. We do things differently, and there is absolutely nothing wrong with that.

Autism has done nothing to stop us from achieving our dreams. Learning to navigate our family’s challenges has not only been possible, it has ultimately been rewarding.

girl standing in front of school holding project
Bethany’s daughter showing off her “Cardboard Carnival” project.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. 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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Parents Are Developing This Neighborhood to Be a 'Utopia' for Adults With Autism

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Parents in East Tennessee are working to create what they hope will be a “Utopia” for adults with autism who have aged out of the school system.

Autism Breakthrough of Knoxville provides many services, including in-home supports, personal assistance, job skill development and more, but its largest undertaking is the construction of a neighborhood in South Knoxville.

The neighborhood consists of seven homes on Thurmann Lane in South Knoxville and an additional six supported homes in and around the Knoxville metro area where staff transport and provide 24-hour support for residents with autism to the degree they require assistance.

This neighborhood is a safe and economical housing option for residents with autism to live independently from their parents. The organization provides a full range of services for residents of this neighborhood, including community living, services, recreation and employment.

“We sat down and kind of dreamed what would be Utopia for our kids, and Breakthrough was born. Is it Utopia? No, not yet, [but] we’re trying to get there,” Beth Ritchie, Executive Director of Autism Breakthrough of Knoxville, told WBIR News. “People think of autism more with little children but little children grow up and autism does not go away.”

The nonprofit was started 17 years ago by parents as a way to provide for their childrens’ futures. State and federal money, as well as private donations, help fund Autism Breakthrough of Knoxville.

Lance Fisher has autism and has been a resident in the South Knoxville neighborhood for the past four years.

“The reason why I moved here is because it’s a much better place to stay with roommates and a house manager and all that good stuff,” Fisher says in the video below.

Get more on the story from the video below: 

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