Apraxia, You’ve Stolen My Son’s Words, But You Can’t Steal Mine

2k
2k
12

Hello, Apraxia.

Caught you off guard, didn’t I? You’ve stolen my son’s words, but you can’t steal mine. He goes to therapy three times and week and conquers your overwhelming, destructive word-stealing ways. He speaks his own lingo, and though it’s nothing you haven’t heard, his loss of words challenges him daily. It’s a challenge he’s accepted and is ready to face. Apraxia, you got nothing on this little guy.

At first you scared us with countless specialist and lots of the unknown. Although apraxia isn’t incurable, it’s definitely hard on the soul. You see, when other kids are playing and talking to each other, you steal the joy and leave my son silent. When he tries to talk, the other kids don’t understand, so he quickly realizes the only safe people to talk to are adults who will listen even if they don’t process a word.

Apraxia, you’ve changed the way we live. We can’t just ask what you want; we have to figure it out! But don’t worry — we’ve embraced our daily game of charades and added more hugs then you can imagine.

Screen Shot 2015-01-15 at 12.08.36 PM

Apraxia, you have challenged me as a mother and made me slow down and enjoy every sound. For that, Apraxia, I thank you.

Thank you for making me record every word and enjoy every hug, even if it’s a last-ditch desperation to get his little mind known. Thank you for forcing me to slow down and listen because this might be the time he says something.

Apraxia, you will soon be a distant reminder of where we began and how far we’ve gone; but for now, you’re part of our family, and we’re better because of it.

Thanks, Apraxia. But we can’t wait to say so long.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

2k
2k
12
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

I Have a Message for All My Son’s Labels

39
39
0

Dear Down syndrome and autism,

I love learning new things.

When I found out about you, I took on the challenge of learning everything I could about each of you.

We’ve been on this journey together for 21 years. First, I read everything I could find on Down syndrome. Some things didn’t seem to fit, but then the autism was uncovered. So I started learning about autism, but that didn’t quite fit, either. Then I found out Down syndrome and autism could exist together, and it became a whole new ball game.

Somewhere along the way while I was busy learning all these things, my younger son was calmly and steadily teaching me something much more important. I learned that you, Down syndrome and autism, are just labels. Now, labels are practical and helpful: hot, cold, danger, stop, walk, don’t walk. There’s nothing wrong with labels — for things. But when it comes to people, labels don’t fit.

That’s what my son was teaching me about you, Down syndrome and autism. You’re nice, helpful labels that point me toward research, advocacy and finding appropriate services for my son. But, no offense — you’re limited. You can’t describe my son. His name is Joe. He’s a unique person. Down syndrome and autism describe him in the same limited way blue eyes and 5’3” describe him. That description helps you pick him out in a crowd, but it can’t tell you who he is.

Joe.CU.2

But I do want to say thank you for all I’ve learned about you both. Learning has made me a better advocate. When I talk to new parents meeting you for the first time, I always share what my nonverbal son told me: “Look beyond the label. See me.”

Sincerely yours,

Barbara Carson

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog [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.

39
39
0
TOPICS
JOIN THE CONVERSATION

The Choice I Make When I Start to Compare My Special Needs Journey to Others’

113
113
1

I’m constantly overwhelmed by what my son’s future will look like. He requires daily emotional and physical work like I’ve never known. Now, this is no pity party; I’m forever grateful for my son’s life, and I know parents that carry a much heavier load than I do. But I guess that’s where the story begins…

There are special needs parents all over the world doing what I do without a washing machine or running water. There are single parents, I know personally, who have kids with more severe disabilities. Then there are parents of typical children. My son has an intellectual disability. I guess I fall somewhere in the middle? I have trouble connecting with them all!

My heart breaks for the parents in other parts of the world with little or no resources. And when I’ve had the pleasure of being around those people, I’m consumed with guilt for all my silly complaints. My dear friends who do it on their own without any help from a spouse or partner — I’m in awe. Who am I to complain when I have a husband to share the responsibility with? I sometimes have trouble appropriately empathizing with parents of typical kids or of kids with a mild disability, because their struggles seem “less” than mine.

I guess what I’m saying is, we all don’t fit in. We can constantly feel guilty and humbled around those in extreme circumstances. Or we can love them harder, lift them up, support them to the best of our ability and let them know we’re thinking about them. Same goes for typical parents. We can feel superior with our struggles, or we can listen and share advice and perspective. We can let them know their fears and problems matter to us too.

Being caught in the middle has given me a great perspective, even if I feel a bit left out at times. I’m constantly rendered speechless by the brave parents I meet, affected by all types of disabilities. And I’m so grateful and honored to know so many compassionate and loving parents of typical kids; they so often ground me and bring me back to earth.

We all have a story. We all have struggles. We all matter, and we all deserve to be loved and cared for, no matter the degree of our circumstances.

A version of this post first appeared on PRIDE Coaching.

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.

113
113
1
TOPICS
,
JOIN THE CONVERSATION

We’re Facing Autism’s Challenges the Way Our Favorite Team Faces March Madness

15
15
0

Last week I was challenged to answer this question: “If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it?”

My first thoughts?

  • “Expletive you.” (“You,” being as a personified version of autism).
  • “Expletive off.”

Let’s be honest, though. I’m not the cursing kind. I don’t really care if others do – but it’s not my thing. So, then I thought about,

  • “I will not let you take my child.”
  • “You will not win.”

Let’s be honest, though.  There are days when autism does win and takes my child. Although these days seem fewer and far between, they still exist, and the memory is not too distant.

It seems obvious to use competition metaphors in March. I’ve always loved March Madness. Even if I don’t watch basketball the rest of the year – March is awesome. Stories like my beloved University of Northern Iowa Panthers (my Alma Mater and current workplace) are inspiring. The year was 2010. They were an underdog — a nine-seed playing Kansas, a one-seed. The score was 63 to 62. UNI had the lead with the ball and 37.1 seconds left.

What a player should do in that situation is run down the clock, attempt to draw foul and make their free throws. Not Ali Farokhmanesh. He caught a pass, was outside of the three-point line, and took the shot. The shot went in and made it a two-possession game, thereby all but sealing the win. Watch:

The shot defied all logic.

My son, Tucker, defies logic.

My husband, a sporty spice dude, came home recently and was excited about a fellow coach’s motivational speech. The coach had a tattoo that read, “WE.” Not we as in you and me. WE as in Win Every day.

That’s what I would tell autism, the divine madness that is our life.

I will Win Every day.

Cancel that.

image (21) No competition is won by an ‘I’ – even in individual sports there are a team of people behind the competitor. Our team? Our we?  Teachers, cousins, coaches, friends, family… everyone.

We’re underdogs in this battle, no doubt about it. But I know that we will Win Every day

So, here is the official letter I would write to autism, if autism was a person.

Dear Autism,

You cause him to be ultra-logical. That’s fine. We will find ways that he can teach us; we will find ways to teach him. 

You cause him to be bothered by loud, sudden or high-pitched sounds. That’s fine. We will not raise our voices.

You cause him to have difficulty making eye contact. That’s fine. We will be patient and remind him. We will find other ways to make sure he is listening.

You cause him to lose his words. That’s fine. We will be patient and wait. We will wait until he finds the words.

You cause him to not understand conversation rules. That’s fine. We will allow him to talk and then calmly remind him it’s someone else’s turn.

You cause him to cling to people he trusts. That’s fine. We will hold him as tight as he needs. 

You cause him to be fearful of stairs and walking on uneven surfaces. That’s fine. We will hold his hand. We will reassure him that we will be beside him every step of the way.

You cause him to bump into things, knock things over and appear clumsy. That’s fine. We have all kinds of Band-Aids and forgiveness for mistakes.

You cause him to have poor fine motor skills. That’s fine. We have amazing occupational therapists.

You cause him to have serious sensory issues when it comes to his clothes. That’s fine. We will turn his socks inside out and allow him to wear sweatpants wherever he goes.

You may stand in the way of processing emotions. That’s fine. We will remain calm in the face of his reaction.

We will Win Every day. Period.

Then I will celebrate those wins. No matter how small.

So bring it on because we’re used to defying logic.

We’re the underdog.

The year was 2010, Tucker was in second grade. Ali Farokhmanesh made the shot. Later that year Tucker received this award.

photo-9 (1)

He will never give up. We will never give up. We will Win Every day.

Sincerely,

Team Tuck

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

15
15
0
TOPICS
,
JOIN THE CONVERSATION

I Took This Photo for My Best Friend’s Family. Then I Found Out Why.

269
269
2

Dear breast cancer,

You’re a bully. You walk around like everyone is afraid of you. You think because you’re unpredictable everyone will cower in fear.

Sure, you’re scary now, but your days are numbered. There are teams of researchers across the world funneling thousands of hours and millions of dollars into curing you. What will you be then?

You really can be a jerk sometimes. Late in December, my best friend’s mother asked if I would take family portraits for them. Naturally, I agreed. Only the next month, on January 7, did I learn why I’d taken those pictures. My best friend asked me and one of our other friends to meet him for dinner. I drove over, confused as to why he would call us, seemingly on a whim, to dinner on a school night.

His mother had you, breast cancer.

Photo for The Mighty

Triple-negative. She started treatment shortly after I took those family portraits. Those pictures were for the bad times and the worst case.

She lost her hair. So what? Now she’s joined me in wearing baseball hats. She got to pick out a wig in her favorite hairstyle. Breast cancer, you lose. She’s fighting with every ounce of her immense strength.

She refuses to let me help her out without paying me — believe me, I’ve tried. She agreed to drive her son and me to a leadership conference all the way in central Oklahoma. Just the other day, I helped her ready her backyard for spring. She was before and remains today one of the strongest and most inspiring people I know.

Nothing will get her down, not even you, breast cancer. She will persevere, and you will be banished from her body. It’s a lose-lose situation for you.

There are good days and bad days for everyone involved. There are noticeable downswings in my best friend’s mood. Those are the days I redouble my efforts to help. There are certainly days when my friend’s mother feels down for the count. And there should be because aggressive treatments can be hard to take. But she always gets back up, unbroken by your petty attempts.

You must have long arms, breast cancer, because you seem to impact everyone you come into contact with. But not a single person will be beat. Everyone remains strong, even through the dark days. My friend’s mom does not fight alone. She’s surrounded by a loving and caring family, a tight-knit group of friends and a supportive community. We will not be beaten.

What are you anyways? You’re an accident of gene mutation. Something gets messed up, and then you arrive. You’re a programming error, and it’s only a matter of time until that programming is debugged. Breast cancer, you’re an insidious creature instilling fear into all sorts of people. That’s just not fair, and it will not be tolerated any longer.

My friend’s mom will beat you. People as a whole will beat you. Your days without a cure are numbered, so enjoy them while you can. You’re going down, breast cancer.

Sincerely,

Stu Mair

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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 celebrate the human spirit? Like us on Facebook.

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

269
269
2
JOIN THE CONVERSATION

This Mom Is Creating a Documentary That Asks What the Future Means for Teens With Autism

150
150
0

Melissa Collins-Porter is a filmmaker and film studies professor in La Costa, California. Her son, Liam, is a 14-year-old high school student with autism. Liam lives a fulfilling life at home with his parents. But what will happen when he turns 18 and finishes high school?

Collins-Porter set out to to help answer the question on her and countless other parents’ minds — what comes next for young people with autism once they reach adulthood? She teamed up with Craig Young, a local filmmaker, to develop “Aging Out,” a documentary that explores new ways young adults can lead productive lives after graduating from high school or outgrowing their support networks, U-T San Diego reported. The film will examine what the high rate of autism diagnoses in California and limited state social services means for families living with autism. It will also feature interviews with teens with autism who are nearing their 18th birthdays, parents, social workers, advocates and caregivers.

The Mighty had the chance to reach out to Collins-Porter about her project in an email interview. We asked her about the story behind “Aging Out,” what she hopes the film will accomplish and what we can do now to help adults with autism lead meaningful lives once they reach adulthood. Take a look:

1. Can you describe the moment you first knew you wanted to make this documentary?

It was more like an evolution than a moment. I knew since my son was diagnosed that I wanted to make a documentary about autism; I just wasn’t sure what the focus would be. When my son reached his teens, I started to think a lot about what adulthood would look like for him and all of his peers with autism. Stories about the issue were starting to appear in the media as this population ages, and I realized the time was right.

2. What do you hope this film will accomplish? How will it differ from other films about autism?

We hope to ask questions, raise awareness and generate hope. Our film will be different from other autism films in a couple of ways. First, we plan to focus on the community, not the disorder itself. We approach this issue with a challenge to society — how do we support and encourage adults with autism to live meaningful lives in our communities? What are we doing well, what are we doing not so well and what can we do better?

Secondly, we plan to approach adults with autism as people who live with some challenges — not patients who need to be cured or fixed. We hope the stories we tell will empower adults with autism to design the kinds of lives they want to live and ask for the help they need to do that.

IMG_3277
Melissa Collins-Porter with her son, Liam.

3. What do you hope other affected by autism will take away from this film?

We hope families living with autism will be inspired to take the individual needs of their child or adult into consideration and work with him or her to make decisions about what they need to have fulfilling lives. And then to maybe let go… at least a little bit.

4. What are some steps people can take to help young adults with autism succeed?

Presume competence! Don’t make assumptions about what people with disabilities are capable of based on their communication, social interaction, appearance or diagnosis. They have been judged their whole lives by criteria that never applied to them. They have intelligence, skills and abilities that often don’t show up on standardized tests.

Also, be direct. In my experience, most children and adults with autism appreciate direct speech and clear expectations.

To learn more about this project, check out the “Aging Out” Kickstarter page, which wraps up fundraising on March 19 at 4:00 p.m. PST. The Cynthia Norall Foundation is matching donations through the end of the campaign. If the campaign is successful, Collins-Porter and Young will use the money raised to create the documentary trailer during the summer of 2015. They plan to shoot the film throughout 2016 with an anticipated release date in May 2017.

*Feature image from the “Aging Out” Kickstarter page video.

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.

150
150
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.