What I’ve Learned in My 10 Years as the Mom of a Child With Autism

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I’m not big on anniversaries other than my wedding day.

But this month is a huge anniversary, one that needs to be recognized and shared. You see, this month 10 years ago, my son Justin received his autism diagnosis months after his initial one of pervasive developmental disorder. For the first time ever it was official, written on his pediatric charts, used when charting his future educational course. It was the first time we ever used the word “autism,” said the word out loud, tried it on for size.

His diagnosis coincided with a whirlwind of decisions my husband and I had to make. Although our school district would be taking Justin the following September at the tender age of 2.5, after viewing their program we realized our son would need more, and that he’d never receive it in Virginia. We also had only eight hours monthly of early intervention services that did not include applied behavioral analysis. We were quickly realizing if we wanted to do our best by our son, we needed to relocate to New Jersey, both for its school and early intervention services and proximity to our families. I spent hours researching where to live, going by word-of-mouth recommendations rather than observation as none of the school districts would let me visit prior to moving. We were thrown so many loops, but we asked questions, went online and soaked up as much information as we could.

We learned.

Ten years later, I’m able to look back at so much of what I’ve learned as the mom of a child with autism for a decade — wisdom I’d like to pass on to any of you just starting your journey.

You will learn that no matter how close you are to people, some of them won’t get your life. You will learn to let them go.

You will learn to value your child’s progress in incremental steps without needing boundless leaps.

You will learn you can meet your child’s needs and will exceed your own expectations.

You will learn more about autism than you ever thought you’d know. You will learn to love educating the world about your child.

You will learn you’ll always worry about what will happen to them after you die. You will learn to live with it.

You will learn it is imperative to take care of yourself. Your child deserves a healthy parent, and you deserve to be whole, too.

You will learn that your love for your child knows no bounds. This knowledge will inspire you to do the best you can even when you’re exhausted and afraid. It will carry you through.

You will learn, and your child will teach you if you leave yourself open.

You will learn.

mom and young son on merry go round
Kim and her son Justin.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Dear Target, Please Do This for Adults With Special Needs and Their Families

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I often bring my adult son into the women’s restrooms with me. The most alarming reaction I ever experienced was at Target when a group of red-shirted employees were waiting outside the bathroom door for us when we emerged. It was clear a store alert was issued. I felt like a criminal.

If it sounds like I have an attitude about it, that’s because it’s hard not to. You see, that day I spent 15 minutes trying to find someone to get me the key to the “family” bathroom so I could bring my adult son who has autism with me. I was told the pharmacy had the key. The pharmacy didn’t have the key. In fact, no one had the key. Well you know what they say, when you’ve got to go, you’ve got to go. I had no choice but to bring my son into the women’s restroom. So I did what I often have to do. I walked into the bathroom hoping it was unoccupied. 

On a good day, the coast is clear and we make it out with no one else the wiser and with our dignity intact. However, restrooms are usually occupied. In those cases, I politely explain my situation and ask people for their understanding. Most often, right after their initial shock, they are understanding.

On this particular day in Target, the women’s restroom was occupied by one woman. I immediately explained my situation and politely asked for her understanding. Her response was, “That’s fine, dear.” But somewhere between “that’s fine, dear” and our exit from the restroom, Target assembled a team to address the problem. I thought for sure we were going to be Target-arrested. It was humiliating and the reason I have penned this letter. The red-shirted group learned that my son required my accompaniment. Let’s just say I wasn’t in the mood for shopping after that and left the store. I turned back around to take this photo because I wanted to share my story with you.

Photo of women's restroom sign at Target

Listen, I get it. It goes against all norms for an adult man to go into a women’s restroom. I agree, it’s a problem, especially for my son’s dignity. I’m writing this letter because it doesn’t have to be if leaders like you posted signs that loosened up the limits on the women’s and men’s restrooms. Not a sign allowing a free for all, a sign that allowed for special circumstances.

I am unapologetic over the fact that I simply will not risk that someone could happen along and lure my son away while he waits for me outside the restroom door where I can’t see and hear him. Losing him once was enough for me; I fear my heart can’t take that experience again. I will not take the risk that he may wander off. My son has autism. He is nonverbal. He has many great skills, but he is also vulnerable, especially to someone with ill intentions. So into the bathroom he comes with me. It’s a simple matter of safety, and that’s that! 

Now let me also say that this safety challenge is a top priority in my son’s Transition to Adulthood school program. His school team is practicing diligently on a system I designed out of necessity so I can see and hear that he doesn’t wander off for whatever reason. He’s up to five minutes of waiting outside of a restroom, and we’re almost ready to test it outside the safety of the school. 

But in the meantime, I know I am not the only woman in the world who is out and about with an adult son who requires one-on-one attention. I can’t be the only person who feels this way when I have to use the traditional restroom. I know that’s what family restrooms are for. But family restrooms are hard to come by, and when there is one, they are likely under lock and key.

So why am I targeting you, Target? Besides the fact that you’re one of the largest retail operations, I really like your store and I want to feel good about shopping there again. I am customer reaching out to you to with a solution. Instead of relegating people like me, and others, to the back-of-the-store family bathroom under lock and key, place a sign that allows some reasonable wiggle room for people like me and others with special circumstances into the restrooms. If you lead, I believe others will follow. I promise that you will win big points with me and many others. You hold the key.

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. 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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5 Things I’ve Learned About Blending a Family With Special Needs

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I was a single mom with a tenacious 4-year-old. He was tall, dark and handsome and came along with two of his own. We were divorcees, cautiously optimistic that true love was still alive and well somewhere beyond our pasts. He didn’t tell me at first that his son, Austin, was autistic and nonverbal. It took a few dates for him to open up about Austin and his diagnosis.

At that time, I knew nothing about autism. It has been three years since then. We live together, and now we have a child of our own. Our brood has grown to four, ranging from teen to teether.

Here are five lessons the process of blending a family with special needs has taught me, and we are all better because of it.

1. We can only offer guidance and support.

At first I imagined myself to be the new hero of Austin’s life, but I was wrong. This is my stepson’s journey, and I am here to guide and support, just like I must guide and support my own son. I needed to let go of my notions that I could make everything great all the time and accept him for where he was at — and we would move forward at his pace, not mine.

2. We are a team.

My partner and I have to divide and conquer to keep everyone calm and collected. We look out for each other, and we are proud to be different. We have strength and resiliency in our uniqueness.

3. I come last.

This one was hard. Here is the man I love, we are all together on a weekend, it is bedtime for the kids and I’m ready to snuggle and chitchat. But the children need baths and their own bedtime routines, and one of us is always attending to another. Our children need attention, and I need to understand that the beauty and strength of the man I love is best utilized when I support him with the children rather than vying for his attention. My support makes our relationship flourish in those times we actually are alone.

4. We have to commit to the unknown.

I had to realize that in this relationship, if we were going to work, I had to commit to the unknown. We do not know how my stepson will be five or ten years down the line. And if I put myself in his father’s shoes, that has to be quite worrisome. I had to accept that this is a commitment not only to the man I love, but to his child. We also needed to educate our other children on their commitment to each other, each person playing a role in one another’s protection and support.

5. We teach one another.

Blending a family is hard on its own; everyone comes with a little baggage. But when special needs are involved, we can all learn to see the world through a different lens. Austin teaches us not only to see, but to sense. He teaches us to be alert, brave and kind in the face of criticism. Our love has grown, all thanks to the way this little boy has taught us to see the world.

Father and son playing in a park playground

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Father and Son With Autism Share Touching Moment in Video Interview

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There’s nothing quite like the love between father and son.

Bill and his son, Chris, who has severe autism, sat down to share their story. In the video below, from Upworthy, Bill discusses his son’s multiple diagnoses, his family’s commitment to getting Chris the therapy and schooling he needed, and most importantly, his unconditional love he has for his son.

The love between the two is evident in the video below, especially at the 2:08 minute mark when they share a sweet moment. Bill tells his son, “Yeah so I’m going to just talk about you, because I love you.” To which Chris responds by inclining his head forward for his father to kiss it.

Son with head tilted forward so father can kiss it

The touching video has been shared more than 15,000 times since it was posted to Facebook on February 3, and many people posted comments praising Bill and Chris or relating to their situation.

A special child requires a special kind of parents to understand, love and care for them,” Layla Bella commented, “and you Sir, you are an awesome father and same to your wife.”

I too have an autistic child,” Sharon Lawson Montenaro wrote. “We did ABA therapy at home with her and she now reads and writes… I love her so much and wouldn’t trade her for anything. She laughs or smiles and suddenly everything is alright with the world again.”

Hear more from Bill and Chris in the Upworthy video below: 

Bill and his son, Chris, are challenging the stereotypes of autism and bringing hope to other families coping with the disorder.(Via andrewsolomon.com)

Posted by Upworthy on Wednesday, February 3, 2016

Related: Father and Son With Cerebral Palsy Show Skaters How It’s Done

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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 [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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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

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