Why I’m Thankful I Saw Another Autism Mom in the Parking Lot

The day after the Blizzard of 2015 brought 29 inches of snow, Andrew and I ventured out for a rare mom and son lunch date. He was content, in his unique way, making happy noises and eating with some quiet prompts from me: “Put your napkin on your lap,” “You have to put the fork in the meatball while you are cutting it with the knife,” and “Is your chair pushed in all the way?”

My son has autism. For the most part, the people in his world are kind to him. As we walked out into the parking lot, another boy walked towards us. He appeared to be about Andrew’s age and was also with his mom. He was autistic, skipping and vocalizing like Andrew and he was very happy. An autism mom can spot a fellow autism/special needs mom a mile way; she and I passed each other with friendly hellos, a nod of understanding and knowing smiles.

She’s one of my people. She’s someone in this world who I feel comfortable with even though I don’t really know her.

The acceptance of autism in our community is not as enlightened as I would have hoped it would be in 2015 when Andrew was diagnosed in 2001. For the many kind folks who accept Andrew and don’t really think twice about his stereotypical behaviors at Market Basket or while walking into the mall, there are those who stare and make fun of him. Recently, a local teen and her friend called him the R-word and pronounced him “funny to watch because he’s so stupid.”

I may often sound confident, and even look it, but it’s been a lonely road. Being a single parent with a child very affected by autism is rarely easy, but it has wonderful moments of joy, too. Mostly, it’s a winding path.

Andrew is learning and growing because people around him care about his success. He has started bowling one afternoon a week. He’s gone to a Celtics game and out to dinner, all with the recreation arm of his school programming.

For the first time in many years, he really wants to have friends, yet he’s still learning how that process works, how to be appropriate with other kids, how to take another’s perspective, and, most painfully, that most teenagers aren’t enamored with Build-A-Bears and Snoopy.

The old adage, “If you’ve met one person with autism, you met one person with autism,” rings clearer than ever. Seeing Andrew with his classmates at lunch in the school cafeteria, as I was secretly thrilled to have to opportunity to do, painted a new canvas of the life of my boy. He has finally has found “his people.” These kids sat together, talked a bit, yet were all more interested in their food than chatting about the weather or Patriots. School “lunch bunches” be damned, the boys focused on eating, making a few comments here and there. They were also happy.

Andrew now has peers who he connects with in small ways. He’s working on making more meaningful connections as he learns how to. These teenagers are part of his community. They might even be his friends.

The mom in the parking lot is part of my community. Parents who have walked the path for years, who are confident in their child and their parenting of him to bring him out to lunch, a place where in reality people might stare. We moms don’t care. We want our children to experience the world and for the world to accept our children.

Community. It’s something Andrew has become a part of. As an added bonus, it’s something his mom found, too, even though she wasn’t even looking for it. More importantly, even though she didn’t know she needed it. This mom is so proud of her boy — and thankful for the mom in the parking lot.

Laurel Collins the mighty.1-001


Why I Cried When My Daughter With Autism Got a Home Run

Yesterday’s softball game started like any other we’ve had so far this season. My daughter, Julianna, practiced with her team before the game. She went up to bat the first time and was able to hit the ball off her coach’s pitch and run to first. It was pretty typical, and I was still proud of her for getting out there and participating with a real team. But then things changed the second time she went up to bat no runners on any bases, and the other team up by 10 runs…

She was able to hit the first pitch, but the ball flew up near her face, which scared her and she began to cry. Her coaches came to her aid, and my husband, Joel, and I encouraged her from the bleachers to try again. As this was going on, the other coach ran out to huddle with his team. I just assumed he was getting a few minutes in with his team while Julianna was being helped. So, once Julianna was ready, she hit the ball again, after a few pitches. And suddenly, the pitcher, who had played well the whole game, seemed to have trouble getting the ball, and Julianna was safe. We were proud! It’s not been uncommon for players to do this because they want Julianna to get to first, and I’m totally fine with that.

But then she overthrew the ball, so Julianna ran to second base with her assistant coach at her side. We were even more excited! This doesn’t happen often! And then suddenly, all the girls on the team were having trouble getting the ball to the bases. So Julianna ran to third, and by this time, my excitement instantly changed to sadness. Joel looked at me and asked what was going on. I told him, “They’re doing it on purpose!” And instantly after I said this, I put my head down and began to cry, covering my face with my hands.

I could feel the other parents staring at me. Joel began to show some irritation toward the umpire, who apparently thought this little home run was not a good idea, and she smirked and rolled her eyes at the other team’s parents. I never saw Julianna run over home plate because I couldn’t stop crying. All around me, I could hear some cheering but also a lot of confusion, like people weren’t sure what just happened or why. I couldn’t control the tears and had to step down from the bleachers and walk away to regain my composure. I’m sure most people thought these were happy tears. But they were not happy tears…

So why would I feel this way after just witnessing my daughter with special needs get her first home run? Simply put: she didn’t earn it. It was given to her, like a gift of charity from the other team who wanted to do a good deed. No doubt the coach wanted to teach his girls to show kindness to someone who is different. And I know that that is a noble thing to do. It might make him feel like he’s created one of those movie moments, where everyone in the crowd is touched by this kind act of selflessness. And I’m certain some were. But you know what? Not every kid gets a home run, special needs or not. And if they do, they earned it, fair and square. That’s when the real magic happens.

Julianna has earned every single skill she’s accomplished thus far in her life, and most have been through tears, tantrums and screaming. She’s learned things I thought she’d never learn, like how to ride a bike. Joel taught her to ride about two and a half years ago. She lacked motor skills and coordination, but Joel didn’t give up on her, and neither did I. We simply believed in her. And she did it, and it was a breakthrough.

People don’t always see that she has amazing potential. That coach has no idea how much progress she’s made during this season. He only saw that she was a little shy and uncomfortable and needed help playing. But the fact that she is playing at all is so huge for our family. And that she’s hitting the ball by herself, real hits. That’s what we celebrate. That’s what brings me joy. What she does, not what is given to her. We want to teach her to fish, not just give her one. We want her to be treated like the other girls on the team. What this little home run did was only accentuate her differences, while some might not have even noticed any before. Her teammates might not look at her the same now. Even her teammates have never gotten a home run! Not one single girl this entire season on any team has scored a home run. So why did this coach think he needed to do it for Julianna?

This coach taught his players how to be selfless and show kindness to a child who might not always fit in with the other girls. I completely respect that. However, because Joel and I had no idea it was going to happen, and neither did anyone but the girls on the team, it created a strange feeling in the crowd. It was like we wanted to cheer, but it was only half-hearted. At least that’s what it felt like to me. How can you cheer when you know it’s not real? Julianna had been playing just fine, hitting the ball on her own. But don’t get me wrong, I do feel grateful for the kindness of this coach. I just would’ve appreciated him letting our team’s coach know and then he could get our approval before doing something like this. Then at least we could have been prepared.

After I gained some composure, I went to talk to Julianna’s coach, and he said, “Some home run, huh?” as he rolled his eyes. I could tell he wasn’t happy they did this. The other coach disagreed and said it showed good sportsmanship, and will help her try harder because now she’s experienced a little bit of success. I told them that I didn’t want anyone making things easy for her, and that I just wanted her to be treated like the other girls. I wanted her to earn everything she gets, and that the other coach should’ve approved this with them, and her parents first. The head coach agreed, and I had to walk away in tears again.

When I was crying behind a tree, one of the moms from our team and also a member of my ward at church came over to see if I was OK. She told me not to worry about that mean umpire, but focus on how this home run might have made Julianna feel. Until this point, I had only really considered how it made Joel and I feel. But once I thought about Julianna’s feelings, I realized she was right. Does how I feel or Joel feels really matter at all? Yes, I think to a degree. But what matters more is how Julianna felt in that moment, because this moment was mostly created for her. I asked Julianna how she felt when she got a home run. She said she liked it and didn’t say much more than that. Not the answer I was looking for, but this is typical Julianna. She’s just going through the motions of the game. I think she knows she got a home run, but really, it might not have been that life-changing for her.

I guess what I’ve learned from this experience is that I still have lots of hope and faith in what Julianna can do. That’s why I wasn’t happy this home run was fabricated for her. It would be different if I knew she wouldn’t progress more than a certain level, but I know she will continue to progress. I know people will not always understand her and will do charitable things, and that’s fine. But as her parent, I have a completely different view. I know she’s capable of doing and learning many things, and I have pride and joy in seeing her accomplish them. I will try my hardest to help her learn everything she possibly can. And when she does, these will be the movie moments for me, because they will be genuine. And as for her, maybe she had her own movie moment while running those bases. But I will never truly know because she often can’t communicate her feelings.

Regardless, Julianna doesn’t need to get a home run for us to be proud. All we care about is that she does her very best. What she has done during this softball season has been inspiring to us.

Follow this journey on The Special Reds.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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 Share Your Story page for more about our submission guidelines.

7 Things You Can Do When Your Therapist Is On Vacation

Dear patients,

I’m a therapist and sometimes I go on vacation. When I do, here’s what I want you to know and some things you can do while I’m gone. 

1. Know I still care.

I know this can be a tough time, but I need you to know I still care about what happens to you even when I’m not there. Please don’t feel abandoned or rejected if I need to take some time off. My positive regard for you never changes, whether we’re in the therapy room or not.

2. Take this as an opportunity. 

When I’m not there, you have a fantastic opportunity to show me how you cope on your own. This helps us discover the areas where you excel and narrow down where the biggest challenges lie. It’s an opportunity to get a good look at how things might go once therapy ends, so let’s make the most of it.

3. Focus on your skills and strengths.

You might be tempted to focus on what’s going wrong. I’d like you to focus instead on the parts of your life that are working well. We can deal with the heavy stuff when I get back. For now, practice what we’ve been working on and hone your strengths and skills.

4. Make use of your wider support network.

I’m only one part of your support network. If you know I’ll be away, then please make sure you have supportive people around you. That can include other health professionals, family, friends and even pets.

5. Schedule yourself a self-therapy session.

For each session we miss while I’m away, I want you to schedule yourself a self-therapy session. Here’s how it works: set an agenda (what you’ll be working on in your session), reflect on how things have gone since your last session, start going through your agenda/problem list and think of one skill you could apply to help with each problem. Then, have a go at it. Think about what I would say if I was there if you get stuck, then at the end of your session choose a homework task you could work on before your next one. It’s particularly helpful for me if you can write this all down and bring it along next time you see me.

6. If you need more urgent help, then please seek it.

If a crisis occurs while I’m away, please seek help as soon as possible. Options include contacting your nearest emergency mental health service, seeing your doctor, going to a hospital or calling an ambulance. Please don’t wait until I am back if you’re at risk of hurting yourself or someone else — seek help immediately. You can also always call the National Suicide Prevention Hotline.

7. Please remember I’m human, too.

When I tell you I’m going on vacation, I see that look in your eyes — the disappointment, the fear — and it can make me feel guilty. The only way I can care for you is if I care for myself, too. I have a responsibility to look after my health and well-being, and that’s what I’m doing when I go on vacation. Rather than feel badly about me not being there, instead celebrate the fact I’m showing you I value my own mental health.

Why Raising a Child With Autism Is a Lot Like Practicing Yoga

I like to use exercise as an outlet for some of my daily stress. While most days, I just have time to push my little guy’s stroller around the neighborhood, I love to practice yoga. Of course, I don’t get to practice it nearly as much as I’d like to, but I always feel great after I get the chance. Sometimes I take classes, and sometimes I get to take 10 minutes (in a row!) to get quiet, stretch out in the living room and even try a new pose or push myself further in another one. It recently hit me — mid pigeon pose — that raising a child with autism is a lot like practicing yoga.

First of all, no one masters yoga, that’s why it’s called a practice. That’s how I feel about motherhood in general — not just parenting a child with a disability. Sometimes I need to take pressure off myself — the pressure that I should have this down by now and be able to cope better during the difficult hours or days or weeks. My daughter is 10, so I have been at this autism parenting thing for a while, and it’s a constant practice for me.

I believe yoga and autism parenting both require four things: flexibility, strength, the willingness to modify and the understanding that everything is temporary.

Most people who practice yoga don’t start out standing on their heads or even being able to touch their toes in a forward fold. It takes time and patience. Flexibility isn’t something that comes naturally to us all. Little by little, with practice, flexibility can grow.

No one is expected to understand everything about autism or even about our own children. We bend and flex and change and grow alongside our children. I’ve had countless beautiful and special moments raising my daughter, though it’s been hard and painful at times. It’s hard to see my child deal with challenges; it’s hard to see other families not experience all that my family has had to gone through; it’s hard not knowing how to help my child or make her feel better in her own skin. It’s hard. There’s not much room for weakness.

On my yoga mat, I’m always reminded of my strength. Feeling like I can hold a pose past what I thought was my “edge” or balancing while twisted up and on only one foot proves to me that I’m stronger than I think I am. When I feel strong, I’m always more patient because I believe in myself and in the process. Taking the strength I feel while I’m on my mat out into my world off the mat is always my focus in yoga; that’s always the goal for me.

Being willing to modify is the name of the game in raising a child on the spectrum. You can be all set and ready to walk out the door to an event you’d been planning on for weeks, and boom, a meltdown occurs. Change in plans! Raising a child with autism requires a willingness to modify, to go with the flow and to be OK with expectations not being met. Modification is not failure, it’s simply an adjustment and adaptation. A headstand using the wall for support or a headstand in the middle of the room is still called a headstand.

And finally, yoga and autism parenting both require the understanding that everything is temporary. Meltdowns are temporary. Behavioral flare-ups are temporary. Periods of plateau in progress are temporary. Sometimes even regressions are temporary. I can move my body into some very strange positions and be just fine and comfortable — even if for just 10 seconds! — while others are incredibly unbearable and uncomfortable. Just when my body starts screaming to get out of a pose, it’s time to change positions. It’s been invaluable for me to learn that if something doesn’t feel right, it’s a temporary feeling. I don’t have to be stuck there. I can modify my position, my attitude, my behavior. Of course, just because I know I can doesn’t mean it comes easily. It’s a practice.

All these things — flexibility, strength, willingness to modify and knowing it’s all temporary — increase over time. Sometimes quickly, sometimes slowly. Practicing yoga and raising a child on the spectrum take perseverance. We fall eight times and get up nine. We keep practicing over and over and over, and sometimes, if we never give up, we can totally nail a pose!

Dani Gillman the mighty.1-001

A version of this post originally appeared on Birdhouse for Autism.

A Dad’s Response to ‘How Can I Minimize My Chances of Having a Disabled Child?’

When a 16-year-old asked a hypothetical question reflecting his terror at the thought of having a disabled child, one father gave him a not-at-all hypothetical response.

How can I minimize my chances of having a disabled child?” the user asked on Quora.com, a question-and-answer website. He followed up:

I don’t want an autistic or Downs child, for example. I am planning on having a strong career in computer science or medicine, and I want to marry someone who is doing the same and have kids some day, but I’m terrified that they’ll be severely disabled, and my wife won’t agree to abort the fetus. I (maybe naively) believe in love, so I wouldn’t necessarily be able to leave my wife if I truly loved her and she refused to abort.

Note that this is purely hypothetical. I am only 16 years old at the moment, but I have thought about this a lot.

Quora offers users the ability to both respond to questions and “upvote” responses they like. In this case, the response with the most amount of votes came from Matthew Might, a professor of computer science and medicine who’s also a dad to a boy with disabilities. Might’s been in the news before — in July 2014, The New Yorker published his piece, “One of a Kind: What do you do if your child has a condition that is new to science?” detailing his family’s search for another patient with the genetic disorder his son has.

In response to this teen’s question, Might told a shortened version of his family’s powerful story (below). In it, he discusses the success he’s achieved in computer science — not in spite of, but because of his son.

“I am grateful to my ‘disabled child’ for teaching me one of life’s most valuable lessons: the importance of using our hauntingly brief time on this planet to do the things that matter, the things that will make a difference,” Might wrote, “the things that are inspired by love and guided by knowledge.”

Read Might’s full response below:

Read Matthew Might‘s answer to How can I minimize my chances of having a disabled child? on Quora

What I Wanted to Tell the Grocery Clerks About My Nonverbal Son

Among other things, my son is 4, very tall, autistic, handsome, affectionate and nonverbal. His sweet smile and fierce hugs endear him to everyone he meets. His autism is a full-time job — most days he’s out the door by 9 in the morning and doesn’t get a break until after 4 p.m. I act as the dutiful shuttle bus driver for school and all of his therapy appointments.

As a result of this packed schedule, we frequently end up running errands while in transit from one place to another. Inevitably, the cashier or someone in line will comment about how quiet and well-behaved my son is. Often, it’s someone apologizing for their own child’s behavior while thinking I’m some kind of disciplinary super mom. They imagine a halo over my gorgeous blonde little boy’s head as he stands there silently, looking at the floor, holding my hand.

Occasionally, they try to talk to him but he’ll turn his head away. Then comes the comment, “Oh, he’s shy, huh?” Sometimes I say yes, because he can be. Sometimes I’ll point out that talking to strangers isn’t a good idea. Sometimes I offer a smile and remain as silent as my son. It isn’t that I’m embarrassed of him or his diagnosis. I try to think what my son would want — would he want all these people knowing? Would it make it better or would it just make him feel even more isolated and different? He offers no explanation so usually I don’t either.

There was one exchange, though, that I will never forget. We were at a packed grocery store right before Christmas. The bagger and cashier were complaining because their kids were going on and on about what they wanted for gifts and had no respect for the meaning of the holiday. I fought back tears as I put my items on the belt. My son was sitting in the cart, his eyes downcast to avoid the bright fluorescent lights. He had my phone and was listening to music to help drown out the overstimulating sounds of the conveyor belt and the beeping of the register. The cashier glanced at me, looking for some commiseration. I couldn’t meet her gaze. I felt embarrassed because I never have any idea what my son wants for Christmas. As with every other holiday and occasion, I have to guess. Sometimes I guess right and sometimes I don’t.

I wanted to tell them how lucky they were that they could hear their children’s voices. I wanted to remind them what a gift it is to be able to know, for certain, what their children need at any given time. For the ability to be told what their children like for dinner or what they wish for on their birthday. My body started to shake with all the unspoken words threatening to pour out of me. I wanted to tell them the greatest Christmas gift I could receive would be for my son to tell me that he loved me. I would give anything to know what he was hoping for on Christmas morning, so he could feel like a regular kid and get something he wanted. I said nothing because I knew telling them all this wouldn’t change anything, but after it was time to leave, I sat in my car and cried.

My son may never talk. I have made peace with that. However, I’m going to continue to find a way for him to communicate not just for his needs, but also his wants. Because every child deserves to receive a gift that they’ll love.

Andrea Manson the mighty.2-001

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