I Asked if I Failed Her by Spending More Time With My Son With Autism

583
583

Wouldn’t it be great if there were a manual with the exact instructions on how to be an awesome parent? Better yet, I wish there were a parenting college major, and when you earned your degree, you had all the answers. Instead, you run on gut instinct, do the best you can and hope that you’ll raise loving and compassionate human beings.

Throw a child with autism into the mix and the job of parenting can become even more challenging. How do you care for that child and also do right by your other children who do not have special needs?

My child-raising years are complete, but being a parent never really ends. From this new vantage point, my husband and I can see the fruits of our labor in both of our adult children, Molly and Jonathan. 

I was curious to find out my daughter’s perspective on growing up. How did I do as a mother? What does she think about having a brother on the spectrum? And did I fail her as a mother by spending more time on her brother? I thought I’d just come out and ask her, and here’s what she had to say:

How did I do as a mom?

Molly: Well, you’re fabulous. I always have an exceptional role model in you. You follow where your heart takes you, even when the path it takes you down is more challenging. You are communicative, honest and you listen. You’re our mother, friend, advocate, confidante and biggest fan.

What’s it like to have a brother on the autism spectrum?

Molly: It’s a fairly normal sibling relationship, but there are times when I look at other siblings and their interactions that make autism feel like an enormous wall between Jonathan and me.

Autism changes the way you communicate, and the dynamics between people that are usually a given are not necessarily applicable to someone on the spectrum. I’ve learned how to meet Jonathan where he is, and to know that in his own way, he is very present to me as my brother and friend, even if there are times when that doesn’t seem true. And beyond that, it’s exceptional to have a brother on the spectrum. It gives me a lot of permission to think differently, reach out to people and community more openly, and practice compassion and acceptance.

When we were kids running around the house, pretending to be superheroes and ninja turtles, our connection was constant. We’ve always met in a place of creativity and imagination. And now we are learning how to access that space as adults. I would say rather successfully.

Jonathan did take more of my time, but I think I was there for you when you needed me. What were some of the things I did for you that really helped?

Molly: You always listened. Everything I had to say mattered. I was heard. Both Jonathan and I have different ways of expressing who we are, and those ways were encouraged in us, even if they were off the beaten path. We were treated as individuals with things to say that mattered, and we were encouraged to say them in the ways that meant the most to us.

I’m a very introverted person who prefers to share myself through music or plays about strange characters or by diving into some kind of creative world. Growing up and even now, that way of expression has been valued. That’s helped me learn how to embrace who I am and extend that value to other people in my life. And I think the same is true of Jonathan.

Did I fail you as a parent by spending more time with Jonathan?

Molly: No, you didn’t fail me as a parent. Parents aren’t perfect all-knowing humans. They make mistakes like anyone else as far as I can tell. If there is unconditional love, support, honesty and openness that runs underneath the decisions and interactions between parents and kids, then it is very difficult to consider anything a failure. And with you, there was always unconditional love, support, honesty and openness.

If you had a chance to speak to parents who have a child on the autism spectrum and one (or more) who do not, what would you say to them?

Molly: Let your kids be dreamers; let them dream big. Help them cultivate a spirit and drive that just won’t quit. Let them live their truth, even if their truth wasn’t what you planned or imagined. Chances are by meeting them in their place of truth, they will become people who are even more extraordinary, surprising and lovely than a person could ever plan for or imagine.

But I’m no parent. I’m just lucky enough to have great role models in you and Dad. I watched you tell my brother, autism and all, to dream big and to never feel less than. And Jonathan is one of the most extraordinary, surprising and lovely human beings I know.

What would you like to say to the siblings?

Molly: If you’re open to it, having a brother or sister on the spectrum will give you a crash course in seeing the world in a whole different way: a way of deep compassion, acceptance and openness. We have a really exceptional opportunity to understand and appreciate the incredible things that someone who thinks, engages and interacts with the world differently contributes to our lives and the lives of others. I am a better person for knowing and growing up with Jonathan. He teaches me about strength, kindness, fun and openness everyday.

It may not feel like this all of the time as a sibling to someone on the spectrum, but trust me on this one: We are so unbelievably lucky.

Thank you for sharing, Molly. I am so proud of who you are and I am so blessed to be your mother. 

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

583
583
TOPICS
JOIN THE CONVERSATION

Why This Teen With Cerebral Palsy Earned a Standing Ovation at Graduation

386
386

On Sunday, the class of 2015 graduated from Columbia High School in Columbia, Illinois. For Robbie Small, getting a diploma wasn’t the only accomplishment that day.

Small, 19, was born with cerebral palsy. His parents were told he would never recognize them, let alone attend and graduate high school, according to KSDK News. But on May 18, despite having used a wheelchair all through high school, Small, with a little assistance, walked to the podium to receive his diploma. The whole crowd gave him a standing ovation.

Small had an important reason for doing this.

To show people that you can accomplish your goal,” he told KSDK News, “even though it’s hard for you.”

Watch Small’s triumphant moment at the 1:40-minute mark in the video below:

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

386
386
TOPICS
JOIN THE CONVERSATION

When My Son’s Barber Gave Us a Gift I Might Never Be Able to Repay

1k
1k

If you are an autism parent, you might already know how difficult and utterly exhausting getting your child’s hair cut can be. My son, Michael’s, first cut was a horrible experience for both of us. After that first cut, we were both ruined for a while. I decided I would start cutting it myself. He still cried. It was still exhausting, and it still took the rest of the day for him to recuperate every single time.

Over time things got better with me cutting, but I am no barber. It always looked OK, but it definitely could have used professional help. One day driving through town, I noticed a barbershop I’d never seen before. I took my other son, David, first. I met Freddy. He did a really good job, and David was comfortable. I thought for a bit and decided I would take Michael. I expected to walk out in tears. When we got there, I explained that Michael has autism and really didn’t like cuts from anyone. Freddy talked to him. He joked with him and made him comfortable. I was in shock. We have always gone back. Michael actually asks to go back.

So when we decided we were going to move, it hit me. I would have to find a new barber for Michael. The thought turned my stomach. The level of trust he built with Freddy doesn’t come easily. Now we would have to start all over. Last time I got Michael’s hair cut, I jokingly (but seriously too) wrote on Facebook that if I had unlimited funds I would fly Freddy back and forth just to cut Michael’s hair. Freddy and I are friends on Facebook, and he saw that post.

Well, this weekend I went to get Michael’s hair cut. As we were getting ready to leave, Freddy asked when we were moving. I told him in the the beginning of July.

He said to me, “My wife and I talked. We will go down to Virginia before the school year starts so I can cut Michael’s hair.”

I thought I was hearing things. I must have looked like a deer in the headlights and I obviously thought that he was joking. As a matter of fact, I must have asked six or seven times if he was. He was not. He was serious. He also was not already planning to go to Virginia. The purpose of his trip, from New Jersey to Virginia, would be to cut Michael’s hair.

How do you thank someone for a gift like that? How do you make them understand just how much the gesture means? I still am not sure. Dinner? A gift certificate? A kidney, maybe?

For now, this post is my thanks to you, Freddy. You have no idea what this means to me… what it will mean to Michael. You have shown a level of kindness that I don’t know I could ever repay you for.

Both of those pictures were taken after Michael’s very first visit to Freddy’s.

autism and haircuts

A version of this post originally appeared on This Ausome Family.

The Mighty is asking the following: What’s one moment someone in your life performed an act of kindness for you or your loved one with a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

1k
1k
TOPICS
JOIN THE CONVERSATION

Is My Marriage Different Because We Have a Child With Special Needs?

560
560

I’ve read blog posts about how the dynamics of a marriage change when you have a special needs child, and it made me wonder: Is my marriage any different because we have a child with special needs?

Rob and I fell in love fast. We knew we were committed to one another before we even knew each other’s quirks, habits or deep dark secrets. People often told us we would have beautiful babies, and in my heart, I believed that to be true. And they were right — we brought two spectacular human beings into this world.

Our daughter, Lola, who happens to have special needs, is our first child and was also born in Costa Rica. I would say our foreign location actually put our relationship through more turmoil than the medical circumstances that surrounded our daughter. Doctor visits, hospital stays, medication administering and therapies were just part of our life and, truthfully, I’m glad we didn’t know any different.

Rob and I became a team in a way we hadn’t envisioned when we were preparing for Lola’s arrival. But I believe life’s curveballs have brought us closer together. Sure, we’ve had emotionally trying days due to the stress of diagnoses as well as the unknowns of Lola’s future, but this can be said about our “typically developing” son as well. We worry about both of our children just as any other parent would. Yet knowing we have each other helps the dark days seem that much more bearable, and the bright days seem that much more joyous. We truly are in this “for better or for worse.”

So when I read headlines that say, “Beating the Odds of Divorce When Your Child Has Special Needs,” I often wonder what makes the marriage we share so different than the rest of the world?

My husband’s response: “Two people who are on the same page. Even more important, when you aren’t on the same page, you discuss the issue so at least it is out in the open, and you know how the other feels. Love is respect. You do each other a great disservice by keeping issues or feelings bottled up. Also, for men, don’t be a dumb ass.”

Smart man.

I see my friends who have typically developing children, and to be honest, their marriage looks just as stressful. There are bills to be paid, mouths to feed, baths to give, chores to be done and homework to be checked. I can’t see much of a difference from my own marriage.

Lola’s life is a little bit different in that her after-school activities are sometimes therapy-based, and she definitely needs to start holding her own in the chore department. So she may need a little extra help with her self-care, but that’s just part of our normal day.

Of course, we have moments when we wish she could put her own pants on, but dang it, so does she. She’ll get there in her own time just like all of her other milestones. But rarely are our arguments ever ignited because of Lola, Lola’s diagnoses, Lola’s care, Lola’s future or anything even pertaining to Lola. We bicker about the dumb stuff like who is going to clean the kitty litter or why our house is in constant shambles every second of the day.

So I guess what I’m saying is that I’m not too worried about Rob and me beating the odds. Our marriage will continue to be a work in progress every single day like any other marriage would be. We will have good days and bad days. We will have days when we need to be reminded that our love did bloom in the quick and breathless way it did, but in my opinion, I think that makes our marriage fairly normal.

A version of this post originally appeared on Say Hola, Lola.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

560
560
TOPICS
JOIN THE CONVERSATION

How Our Lives Changed After This Photo Was Taken

50
50

They were happy back then and enjoying a relatively carefree life.

Together for years but recently married on a whim, they could have had pretty much whatever they wanted, go wherever they wanted … without ever having to think twice.

But look closer into her eyes, and you’ll see there’s something missing.

Something that money couldn’t ever buy. It was something she so desperately wanted. She’d hidden the feelings so well that no one could have ever known. She never spoke about it, because it wouldn’t have made any difference even if she had. It was pointless.

The medical profession had made things very clear: This couple would never be able to have a child. So they just got on with their lives and made the most of it, because that’s all they could do. They didn’t have many options. And life was good.

However, little did they know that there were actually three of them in that photograph.

Their little girl was waiting to meet them.

The medical profession had got it so wrong.

Several days later, they found out that they were going to become parents. To say it was a shock would be an understatement. So after a relatively easy pregnancy, Hannah arrived. Minutes later, their lives were flipped upside down and they were thrown into scary and uncertain world (you can read more about it here).

Plan A would have been the usual scenario for most average couples enjoying the glow of an impending birth. After maternity leave, mama would go back to work, baby would go to the nursery and things would be relatively the same as they were before but with more responsibilities. There would be children’s parties to attend, ballet classes and sleepovers. There would be a quest to find the best education possible and to save up for college.

Dreams and aspirations were now shattered into tiny pieces. There was no Plan B. None of this had been anticipated. So what happened next?

Once life had settled down to their new “normality” (the word “normal” isn’t usually used in their house), they just got on with things and made the most of it. Nothing and no one could have ever prepared them for caring for a child with profound additional needs. It would put immense pressure on their relationship. This little bundle of gorgeousness would completely dictate their lives, probably for the rest of their lives.

There would be no more going out for evening meals, and trips out would very much be limited. Finances would need to be reviewed. They would need to tighten their belts, but they’d always lived within their means anyway. There would be no ballet classes or sleepovers. But there would be different opportunities ahead.

There would be no spontaneity whatsoever to do anything at all. Life would move at an entirely different pace … a very slow one.

There would be no more drinking wine and listening to music into the early hours. Bedtimes were strictly adhered to because nasogastric feeds would need to carried out throughout the night. Because of the unpredictability of nighttime illnesses, sleep would become immensely precious. Every outing would be planned like a strategic military exercise.

There would be no “date nights” because there would be no babysitters able to care for Hannah. Relationships would be strained because life would be cluttered with appointments, tests and meetings. There would be no emotional energy left to rekindle the relationship they once had. Any holidays would initially be on hold. Later, they would need careful consideration, and cases would be packed to cover every eventuality.

When she looked in the mirror, she didn’t recognize herself. She had lost her identity, but eventually she got some of it back.

Most conversations held would revolve around Hannah. They would both need to review how the family unit could function effectively and then try to muster some semblance of the life and relationship they once had.

They’d learn very quickly who their true friends were and who they could rely on for support — and they were few and far between. They would see, with much sadness, other people’s relationships fall apart through the stresses and strains of caring for a child with additional needs. They’d prioritize their child. Nothing and no one would ever be able to sway them from that. Together they would make decisions and comfort each other on the dark days.

No one could have ever prepared them for any of this and no one would ever understand unless they’d walked in their shoes. But they adapted, not just because they had to, but because they wanted to.

And while their lives have been flipped upside down, their hearts almost broken several times and their previous life now unrecognizable, we are still happy now and we make the most of the time we have with our extremely precious and inspiring little girl.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

50
50
TOPICS
JOIN THE CONVERSATION

The Selfless Way He’s Dealing With the Drunk Driving Accident That Changed His Life

145
145

When his family perished in a car accident that left him paralyzed, Jimmy Anderson’s life changed in an instant. But the same tragedy that took so much from him also led him to dedicate his life to preventing others from experiencing that same pain.

It was August 24, 2010, and Anderson was home in Patterson, California, visiting his family between semesters of law school at University of Wisconsin, Madison. Two days before his 24th birthday, he went out for a celebratory dinner with his mother, father and brother.

unnamed-1
Jimmy Anderson with his mother, Emma Anderson.
unnamed
Jimmy Anderson with his father, James, and his younger brother, Andrew.

On the way, a drunk driver who’d gone through a stop sign at 60 mph, crashed into the side of their vehicle.

unnamed-1

unnamed

Anderson was the only person to survive the crash.

“I was trapped in the back of the vehicle, and I can remember banging on things and yelling at [my family], ‘Tell me that you’re OK, tell me that you’re OK,'” Anderson told The Mighty. “There was a lot of blood, and it was very quiet except for the sound of the engine ticking. I remember feeling deep down that I knew they were gone.”

Anderson then passed out from blood loss, and the next thing he remembers is waking up in the hospital with his wife sitting next to him. She had to explain to him that his family didn’t survive the accident and that he was now a quadriplegic.

unnamed-1

After six months of intense rehabilitation, Anderson left the hospital and returned to law school in Wisconsin. He says the support from people in his hometown and schoolmates that helped him get through the difficult time. Many people pitched in to help him purchase necessities like his wheelchair, a wheelchair-accessible vehicle and a ramp for the front of his house.

“I was so lucky in that I had some supportive communities behind me after the accident,” Anderson told The Mighty. “Not everybody has that.”

unnamed-2
Anderson with his wife, Ashley.

In 2012, Anderson graduated from law school and began working at the Department of Justice in Wisconsin. Although he enjoyed his work, he soon realized that there was something else he wanted to do.

“I needed to do something to bring attention to the problem of drunk driving,” Anderson told The Mighty. “Being a lawyer has been great for my mind, but I needed to do something for my soul. I have a story, and I knew I could use my story to make a difference.”

Anderson and some colleagues launched a nonprofit called Drive Clear, an organization that provides a way for the victims of drunk driving to raise the funds they need for medical expenses, disability resources and other financial obligations.

Drive Clear hosts “Recovery Campaigns” — individualized fundraisers for victims that help free them from financial stresses while they focus on recovering. The nonprofit also works with BACtrack, a company that makes breathalyzers, to put these tools in the hands of as many people as possible. That way, people can ensure they are safe to get behind the wheel after consuming alcohol.

“I don’t want my parents to have passed away in vain,” he told The Mighty. “And I know they wouldn’t want anybody else to have to go through what I went through. They’d be really proud of the fact that I started this and that it’s in their memory.”

Recently, Anderson was speaking at a high school event about the harmful effects of drunk driving when a young woman asked him a question. She wondered if he blamed the man responsible for the accident that took his family and his ability to walk five years ago.

“I was surprised by my reaction,” Anderson told The Mighty. “I told her we’re all responsible for the actions that we take, but I also feel sympathy for him. I don’t know his circumstances, I don’t know what made him drive drunk that day. I could get hung up on anger and hatred, but I doubt wherever he is now that he’s proud of what he did. I bet he would take it back if he could because you never want your memory or your last act to be what that guy did. I’m trying to provide people with the tools to prevent that.”

Drive Clear is a volunteer run site where 100 percent of the donations go to the cause. To donate to Drive Clear, go here

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

145
145
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.