boy with hands on either side of his head

10 Things Parents of Kids With Apraxia of Speech Wish You Wouldn't Say to Us

81
81
10

My son has childhood apraxia of speech (CAS).  These are the top 10 things, from my experience, I wish others wouldn’t say upon meeting children like mine.

1. He will grow out of it. 

Really? Are you sure? Google “CAS,” and get back to me on that.

2. Oh, you know Einstein didn’t talk until age 3! He’ll talk when he’s ready…

Refer to answer #1.

3. He’s shy and/or rude.

No, actually, he can’t talk.

4. He just needs a little spank. [During a major meltdown]

No, you need a little spank! He needs some words and a hug — and someone who read #1 again!

5. He’s a what? Apraxic? Don’t you mean autistic?

No, I don’t.

apraxia
Photo credit: Gina Larum

6. Yeah, I’ve heard of it… my brother’s aunt’s cousin’s uncle had it. He’s fine now though…

Great, that’s a relief…

7. But I heard him say, “Mom.”

Yes, he’s capable of saying a lot of things and sounds. He simply can’t talk.

8. I heard *insert odd idea* works.

Thanks for the thought, but I’ll stick with the countless doctors and professionals currently treating my child.

9. When will he be able to talk?

My Magic 8 Ball isn’t working today, so let me get back to you on this.

10. He’s still not talking?! 

Trust me, we’ve got this under control. Just read #1, please. Thanks!

If you would like to learn more about CAS, here are two great resources:

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and 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.

81
81
10
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

40 Boys Put on Suits to Stand Up for Their Friend. It Worked.

112k
112k
95

Jennifer Keefe’s 10-year-old son, Timothy, came home from school last November and asked his mom to take him out to buy a suit.

Keefe was taken aback. She was used to her 6-year-old son, Danny, wearing suits — he’d been attached to them since the Christmas before, when his mom bought him a red shirt and black jacket. But Timothy never showed any interest in dressing up.

“Ten-year-old boys like to wear Under Armor and sweatshirts,” Keefe recalls. “I asked him why he needed a suit.”

“We’re all wearing them,” he said, “to show Danny we support him.”

Screen Shot 2014-05-09 at 11.04.24 AM

Kids at school often bullied Danny — they didn’t understand why he wore a dress shirt or fedora each day, and they didn’t understand why he couldn’t talk. Danny has apraxia of speech, a motor disorder that makes it difficult for him to communicate. Kids would go up to him and ask, “Why can’t you talk? Just talk.” He’d come home from school distraught.

But a group of the boys on the Bridgewater Badgers’ football team, where Danny is the official water manager, wouldn’t stand for this. Their solution? A “Danny Appreciation Day,” where they would all imitate Danny’s suave style and proudly go to school. In the Life Is Good video below, you can watch scenes from that day — more than 40 boys wore suits. Danny led the march.

Screen Shot 2014-05-09 at 11.06.13 AM

“It could have turned ugly. The boys could have gone to the playground and said, ‘Who’s doing this to you? Where are they?'” Keefe told The Mighty. “But instead they responded in this very adult-like, peaceful way. It was all about love and support.”

Nearly six months later, Danny confidently walks around the school hallways. No one picks on him anymore, his mom says.

“It’s kind of the opposite now,” Keefe told The Mighty. “Kids go up to him and say, ‘Hey, you’re the kid from TV!'”

Family friends have also started a fundraiser to help the Keefes afford Danny’s expensive speech therapies. Out of the 100 sessions he needs this year, insurance will only cover about 15, Keefe says. It’s a battle she downplays, though — her son’s happiness is a priority.

“Danny started crying when he saw everyone in suits that day,” Keefe recalls. “He was only 6 but it was like he understood the magnitude of what happened. I’m just so thankful the parents in my community raised such kind young men.”

Watch Danny’s story in this Life Is Good video, directed by Tim O’Donnell:


112k
112k
95
TOPICS
Video,
JOIN THE CONVERSATION

An Open Letter to a Child With Autism, From a Teacher

568
568
6

Dear ________,

You may not know it, but you are on my mind more than you may think.  I think about you all the time. I see you. I want to help. I try to honor your inner landscape and intervene, not overpower. I try to talk with you, not at you. That’s why I do what I do; for you, with you, and with the others who care so much about you. Just like I do.

What do I do with you? I work to create a breadcrumb trail for you to follow, each and every day. Even if it seems unnecessary or confusing. Even if the intervention is “repetitive” or “not working”. I eagerly count each success and fiercely guard each disappointment I feel, so that you don’t get discouraged when things are hard. I’m aware of your attempts to reach out, to learn, to understand, and to make sense of the world around you. I’m aware that it can be a fun yet scary place, and that it’s hard sometimes to “fit in”. I try to watch out for you and cater to your strengths and preferences, while being mindful of your challenges and dislikes. I cherish our time together and each triumph, each smile, laugh, and word. I relish the unique mindset and skill set you demonstrate, and each opportunity to help you expand your horizons.

That’s why I use a combination of toys and technology, of free play and structured activities, and spontaneous conversation and elicited question and answer sessions, at different times, to help you learn to:

  • Better orient to person/place/time so you can stay “grounded” longer and more frequently and learn to sequence events and anticipate outcomes
  • Develop a sense of humor so that you can take constructive criticism and transition better, and “bounce back” more easily when things don’t go as planned
  • Categorize and group like/unalike objects and pictures and explain why? so that you get “organized in your head” and understand what “a place for everything and everything in its place” really means
  • Manage your stress levels and sensitivity to things like texture, sound, light, changes in routine etc. so that you can communicate your wants/needs and displeasure in a way we can understand and accept, and you can better problem solve how to “talk yourself away from the ledge” and let others know how you feel.

So I make seemingly random comments and suggestions to you and your family. I suggest that you do things you may want or not want to,  like (under supervision!)

  • Spending time playing with other children outside in a playground
  • Spending time reading books/stories about others and their feelings
  • Spending time learning to use specific iPad Apps
  • Spending time completing chores at home
  • Spending time with animals and/or caring for a pet
  • Spending time taking mini-road trips and outings around the neighborhood

I know, I know, you may think I’m pushy. I admit that I’m trying to teach you lots and lots. But I have a secret to share…..you have already taught me so much more than I could ever teach you! Each and every encounter I have with you enriches my life, and makes me realize things about myself, about the world, that I never knew! I also never knew how much patience and love my heart could hold, or how creative I can get with my lesson and daily planner!

Thank you for being you, and for giving me the opportunity to see who you really are. Thank you for trying so hard and for not giving up on me. I won’t give up on you. We’re in this together, and I can’t wait to see what you do next!

Love,
_________

This post originally appeared on Friendship Circle.

568
568
6
TOPICS
JOIN THE CONVERSATION

Couple With Cerebral Palsy Finds an Awesome Way to Get to Prom

255
255
0

Why take a limo to prom when you can arrive in this fashion?

When Kelsie Levad and her boyfriend, AJ Novotny, couldn’t find a vehicle that accommodated wheelchairs to bring them to their pre-prom dinner, the Arvada Fire Department in Arvada, Colo., stepped in.

Firefighters offered to take the teens, who both have cerebral palsy, in a firetruck. Neither AJ, who volunteers at the station every week, nor Kelsey knew the plan until the night of prom. They’d shown up thinking they were just taking pictures in front of the trucks. Afterwards, the Arvada team broke the news.

“It was exciting for all of us to see the joy in his face,” AJ’s para-educator, Dianna Boyer, told TODAY. “They were beside themselves.”


255
255
0
TOPICS
JOIN THE CONVERSATION

Man With Down Syndrome Sings National Anthem at Red Sox Game, Knocks It Out of the Park

962
962
4

Michael Mullins is moving up to the big leagues.

For the last 10 years, Mullins, who has Down syndrome, has been performing “The Star Spangled-Banner” for the Pawtucket Red Sox, a minor league baseball team in Pawtucket, R.I., according to The Metro West Daily News. Finally, with the help of the Michael Carter Lisnow Respite Center, the Boston Red Sox gave Mullins, now 38, the chance to sing the national anthem at Fenway Park. On Thursday, May 1, in front of more than 35,000 fans, Mullins put on the performance of a lifetime (below).

“No, I’m not nervous,” he told WCVB before the game. “Piece of cake.”

He certainly didn’t make it look hard.

962
962
4
JOIN THE CONVERSATION

High School Bat Boy Has a Truly Perfect Game

277
277
0

Eddie Gordon has been the Timberline High School baseball team’s bat boy for the last two years. But for senior night, he found his name on the lineup.

In the clip below, Gordon, who has Down syndrome, steps up to the plate as players from both teams cheer him on. He doesn’t disappoint.


h/t NESN.com

277
277
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.