To the Parents Who Ask ‘When’ About Their Kids With Autism

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“My son is 4 and he still refuses to even try to use the potty and I was wondering when…”

“My kid started OT three months ago and my husband and I still haven’t seen any improvement so when…” 

“When did your Kiddo start eating? I swear I could deal with the picky eating if I just knew when it would end…” 

Every time I see “when” in a sentence about autism and a young child, I sigh. Not a “Gee, these people are so clueless” sigh. More like “Oh yeah, I remember when I still couldn’t let go of those milestone moments, too” sigh. Oh, newbies. Welcome to #TeamQuirky! A life where you learn schedules really can help your child with autism, and yet there’s no real set standard of one to follow. Come sit by me at this lunch table. I am part of your tribe.

I get it. Your little one is in front of you and you’re still consulting all your parenting books about what they should be doing at that age. You see the time slipping away from you. Why aren’t they following the instructions? You want to fix the problem. You’re running out of time!

Here’s the thing, sport. You must chill out. There’s a person who needs a time-out right now, and it’s you. I know, I know. You’re rattling off the screen right now about the importance of early intervention and how your child is falling behind and you have a limited window of time and yadda, yadda, yadda… I hear you. I know that song. Hell, I wrote that song. The milestones? The benchmarks? Guess who’s in charge of that? I’ll give you a hint: not you!

It’s your kid and yes, I know it’s super frustrating. They are the ones who ultimately decide anything. Any progress or growth, it’s all them. Pretty much the only thing you have control over is you accepting you don’t have control. So hang on to that if it makes you feel better. Otherwise, buckle up; it’s a hell of a ride.

The time you’re so hung up will go at the pace they set. Some of it will be fast. (Like my son, the Kiddo, figuring out how to scale the baby gates like it was his job.) Other times, it will stand still. (Usually mid-meltdown, when time stands still.) If you’re lucky, you might even get a sweet spot of time when they do stuff just like a typical kid their age. (Kiddo took to bike riding like water off a duck’s back.) Of course, the double-edged sword of that time is you will start to compare and contract everything else they can and cannot do and when they did it. Time is a real mofo like that.

There’s no set schedule to when things are going to happen for your kid and this life. I can’t tell you when things will happen for your kid like it did for mine. I also hate to tell you some of the stuff my Kiddo does, your kid might never do. However, that might be both good and bad depending on how you look at things. (Maybe your kid won’t think screaming like a howler monkey for fun and pleasure is good idea. I say you’re winning if that’s the case.) Likewise, I bet there will be things your kids will do that mine cannot and I’ll find myself wondering, “What did they do? If only I knew what it was so I could go back in time…” Yeah, ’cause that’s doable.

I think the band Styx said it best about time:

Is it any wonder I’ve got too much time on my hands
It’s ticking away with my sanity
I’ve got too much time on my hands
It’s hard to believe such a calamity
I’ve got too much time on my hands
And it’s ticking away, ticking away from me

So try not to get so caught up on the time factor and your kid. It will do you in. The only thing it’s time for is another side of fries.

Follow this journey on Autism With a Side of Fries.

Lead photo source: Thinkstock Images

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People Living With Chronic Illnesses Break the Silence in Intimate Photo Series

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When Allie Cashel and Erica Lupinacci became friends while working on a middle school play, they had no idea how much they’d end up having in common.

The girls, both from Westchester County, New York, continued their friendship through high school where they were both forced to confront their own chronic illnesses. Cashel has chronic Lyme disease and Lupinacci has Lupus.

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Erica Lupinacci and Allie Cashel when they were in high school together.

As seniors in high school, the teens faced many medical complications and treatments, however, they rarely spoke about their challenges to one another — or to anyone at all. Then, years later, they opened up to each other and decided to start a social media campaign to help others break the silence and stigma surrounding chronic, often invisible illness.

“I have a few memories of being aware that Allie was sick — she took a leave of absence from school for a while and we visited each other in the hospital a few times — but we never sat down and talked about what we were scared of or what was hard,” Lupinacci told The Mighty. “And I think that’s pretty consistent of young people going through this.”

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Lupinacci and Cashel recently.

“Many young people don’t know how to deal with a chronic or persistent disease at that age,” Cashel told The Mighty. “You don’t want to be a downer and you already have to miss out on sleepovers and other things that are big parts of growing up, so you just don’t talk about it.”

Knowing that even two close friends didn’t feel comfortable talking about their medical issues inspired Cashel and Lupinacci, now both 24, to give people a space to talk about these experiences. They created a website called Suffering The Silence, which gets its name from Cashel’s debut book about her experience with Lyme disease (launching September 8).

“The main focus of the book is Lyme disease, but one of the things that it also does is contextualize that conversation in the social conception of other chronic illnesses,” Cashel told The Mighty. “One of the cool things about sharing our experiences was that there is a huge overlap in the experience of living with different chronic illnesses. Just because you have one disease doesn’t mean you can’t relate to people who are suffering from illness in general.”

They recently launched a photo series  called “Suffering the Silence: Portraits of Chronic Illness,” where they asked 11 New Yorkers, including themselves, to pose with a hand over their mouth and the name of their disease written on their arm.

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Erica Lupinacci / Amanda Crommett Photography

“We’ve both been vocal about our conditions, but there was still something really scary about having the name of the disease on you,” Lupinacci told The Mighty about posing for the photo series. “I think there’s something really brave and unique about sharing it in that way and having someone see the name of it on your body.”

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Allie Cashel / Amanda Crommett Photography

“What I really wanted to call attention to is the idea that the silence surrounding it is one of the major struggles of illness,” Cashel told The Mighty. “We don’t often think about it as one of the hardest things to overcome about disease.”

The project is dedicated to breaking the silence and stigma around chronic and invisible illnesses by allowing people to boldly showcase their diagnosis to the world. You can read a short blurb from each person about their condition on the website.

See the photos from the series below:

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Visit the Suffering the Silence website for more information and use the hashtag #SufferingTheSilence to add your voice and photo to the conversation.

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Why I Cried After My Son With Autism Pulled Me Into the Kitchen

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My son, Owen, pulled me abruptly off the couch by my arm. Just because he can’t talk doesn’t mean he can’t get his point across. He made it clear he wanted my attention, and anything I was doing needed to wait.

I had my headphones on and was watching a YouTube video explaining the fundamentals of meditation. I set it aside and followed him into the kitchen, feeling only slightly bothered.

“What’s up, buddy?” I asked him.

He climbed on top of the counter and sat on his knees — his favorite way to eat — and pulled over his plate of pizza. Before taking the first bite, he made one of his sweet cooing sounds, reached his arm around my neck and put me in a gentle headlock.

I was surprised at first. My nose was pressed softly in the nape of his neck. It was then he picked up a cheesy slice and took a bite. I could feel the muscles in his jaw moving as he chewed. I stayed perfectly still.

He picked up his cup and took a long drink of water. I could hear the liquid swish down his throat. I dared not move.

He set the cup down and loosened his grip on me just enough to get a good look at my face. He gave me a calm, comfortable smile. He continued to eat and drink, and I continued to savor the moment. I kissed his neck softly, and he smiled as he chewed.

Shelly Fraley the mighty.3-001

There are so many children with autism (and without) who don’t desire physical contact or cuddling. When Owen was diagnosed that was my biggest fear. Would my child want me to hug him or not? I didn’t think my heart could handle it if he didn’t. Sometimes I remember that feeling of fear when he blesses me with moments of physical affection. This was one of those times.

A rush of emotions flooded over me, and out of nowhere, tears streamed down my face and onto his bare shoulder. I whispered, “I love you,” in his ear over and over. He continued to eat.

I finally pulled away to wipe my tears and gather myself. He reached for the dish towel next to the sink, dried the tears from his skin and continued to eat.

I smiled as I watched him. I wondered what it was like to not subscribe to any of society’s norms. He didn’t feel the pressure to ask me why I was crying or if I was OK. Was there a blessing in that?

This beautiful soul, who has brought me to my breaking point and back, is paradoxically also the greatest gift. I have screamed at the top of my lungs with him. I have cried with him and alone. I’ve made bargains with God that I wasn’t even sure I could keep. And through it all, this boy has been my greatest teacher.

To learn to fully appreciate every act of love is one of life’s greatest lessons. Owen taught me how, and I’m forever grateful.

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

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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

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

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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.

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7 Things You Can Do When Your Therapist Is On Vacation

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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.

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