To the Director Whose Comment About ‘People Like Me’ Saved My Life

88
88
0

Six years ago, you changed my life. You didn’t know it then, but you simultaneously crushed my dreams, broke an immense part of my core and unknowingly cracked open the door to my ideal life.

That fateful day we met to discuss and plan the upcoming semester courses. We started a conversation about why I chose music therapy. Having disabilities, I already innately knew and understood how music therapy was beneficial. I saw the importance the work has on others with disabilities, and I felt as though I’d provide a different perspective, much-needed value and insight in the field. The only thing I distinctly remember was the blow you delivered: “People like you don’t practice music therapy. Music therapy is done to you.”

It left me in complete, utter shock. Since it’s my nature, I was stubborn and continued to plough through as much as I could. Substantial discord ensued that affected other parts of the school and my functioning rapidly decreased, both from those situations and outside personal events. After a few months, under unjust rationale, the administration felt my involuntary removal was best.

To say it affected every facet of my life and being is an understatement. By the time I could surface from the damage and shock, start to briefly acknowledge it and file a federal complaint for discrimination — four years later — the agency stated the statute of limitations had passed.

I cried a lot that summer. Deep, body-heaving, energy-draining cries for the loss of who I was, the discrimination I received for what was wrongly viewed as my “inabilities,” and not being able to take a stand.

But I’m not one to back down in letting my disabilities ultimately define me.

Self-healing doesn’t happen overnight. It’s a continual, ongoing process. For years there was constant questioning and denial in my abilities and self-worth and numerous struggles and setbacks. I had weeks or months when I felt on top of the world, but as I continued to peel back layers and delve deeper (sometimes without intending to), I’d be pulled down again. And there you still were. Your words tinged and permeated everything, always there, subconsciously whispering behind my shoulder. I refused to see or acknowledge it; better to bury it. For the last year, it’s finally been a twitch.

Then a few weeks ago, it quietly came out of the blue in the recess of my empty mind. The revelation was so clear — I was viewing it completely wrong. I was continuing to look at it from a victim mindset, when really, why and how could I continue to think of myself and live my life in that way? What good did that serve? Instead, those words were truly a gift over the years, leading me to where and who I am today.

Had I continued on the initial path and goal, I might never have known the fire and creativity that lay dormant, hungry for seedlings of knowledge and experience that can only be learned through heartfelt, tough instances. I wouldn’t have realized my soul yearns for and thrives best with an inventive life. I wouldn’t have had the opportunity to know the depth of my strength and resolve that is a crucial, core part of myself. It wouldn’t have given me further gentleness and compassion. I wouldn’t have gained greater patience about how and when things unfold. It wouldn’t have led me to finish my education elsewhere, where by happenstance, I took a class I absolutely fell in love with, becoming so engrossed that it became my foundation. I wouldn’t have been able to take back the definition of who I am and start my healing journey.

Thank you for giving me the opportunity to find and discover my strength, worth and essence. Thank you for your cynicism; it ultimately inspired and invigorated me to tenaciously believe in myself. Thank you for helping me see that I was, can and will be so much more than I could’ve ever been otherwise. If there’s one pivotal significance I’ve gathered, it’s that I need to fully express, live in and be all of me — autistic, hard of hearing and all my other equally unique, amazing and monumental aspects — for me to truly feel alive, fulfilled and real. Anything else would be inauthentic and deceiving. And that’s not how I can nor want to live.

Your words incited me that taking a stand doesn’t always have to be loud; it’s also honoring yourself and making that partnership with yourself a much-needed priority. As a result, my self-worth has grown and multiplied boundlessly. It allowed my true passion and purpose to come through — helping others, with and without disabilities, to realize, embrace and shine their own light as well.

You didn’t know it then. Six years ago, you saved my life.

Editor’s note: A previous version of this story used the word “professor” in the title. It has since been updated to “director.”

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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.

Lead photo source: Thinkstock Images

88
88
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

To the Basketball Team That Made My Son an Athlete

337
337
2

I could think all night about the days when I played softball and even back to my t-ball days if I think way back in time. I have no clue tonight just what my son will remember from his first basketball team, but I hope it goes something like this: “My teammates were great — they all encouraged me to do my best!” “My coach gave me every opportunity to play!” “My teammate’s sister (my new friend) taught me how to get the ball in the hoop!”

I ask you one other thing about this picture that will hang somewhere in our house as a very positive memory: Do you see the kid that fits the description of having an “A” in his or her title? Look close, I’ll wait!

Kids' basketball team and coaches posing for a photo
April’s son posing with his basketball team and coaches

Give up yet? They all do! The “A” I’m talking about is “Athlete!” That’s not the “A” you thought I was talking about, right? Yes, my son has autism, but that’s not the main point here. The main point is how this amazing coach treated my son from the start. This coach treated him just like all the other teammates and thus, in turn, his teammates turned around and treated him the same way. Coach took him under his wing just like the others, drilled him when the others ran drills and gave applause or correction when needed just like he did with the others. My son didn’t have to sink a single basket during a game (although he got pretty good at doing it during practice). He showed up and tried his best, and they respected him for it.

And to you guys, his teammates — you will always be a part of something bigger than you’ll ever know. You made this team sport a success for my son, and your support is a burst of inspiration to us all. It will carry us when times are hard in the days and weeks ahead. It will remind me that inclusion can happen outside of a classroom, where it’s been mandated by a law. All that’s needed is the willingness of a leader who will show his team how. I will think back to when my son was “just one of the boys,” and I will remember that this team made him an Athlete — not because of his ability or disability, but just because he was a kid who wanted to play.

337
337
2
TOPICS
JOIN THE CONVERSATION

Dad Filmed His Lively Conversation With Nonverbal Son With Autism

496
496
0
496
496
0
TOPICS
Video,
JOIN THE CONVERSATION

3 Attitudes I Have About My Life With Autism

1k
1k
13

Hi everyone, my name is Andrew Levin and I am a digital editor interning with The Mighty. I’m very excited about this opportunity, and I hope to do at least one video a week for you all.

If you have any ideas about the kinds of videos you’d like to see made, just email me at [email protected] For now, check out the first video I made about three attitudes I have on my life with autism.

1k
1k
13
TOPICS
, , Video
JOIN THE CONVERSATION

To the Mom Whose Son With Autism Is Just Starting Kindergarten

167
167
4

My husband Sean left yesterday for a business trip.

Basically, in the next month, he will only be home for about five days.

He used to travel like this all the time — he worked in a different state and was gone Monday through Friday. The only difference was that our boys were much younger — this was 10 years ago. And our oldest, TJ, diagnosed with autism at age 2, had just started kindergarten.

His traveling got me thinking how different things are now from that stressful time so long ago. It was hard to hold it together day-to-day back then. And I thought, “What would I tell that Lauren 10 years ago, if I could, to help her get through such a tough time?”

So I thought I would write a letter to 10-years-ago me:

Dear Lauren,

I know how you’re feeling! It’s so hard to send TJ off to kindergarten after three years of all his autism services being at home. It’s hard to let go of that control and not know what he is doing, and how he is doing, throughout his day. And it’s really hard to do this all alone while Sean is working, and with our other son Peter still at home.

But let me tell you something: Everything is going to be OK.

Here’s advice from someone who knows 1. what you find to be the most difficult about all of this, and 2. what will happen in the next 10 years that you can’t see right now while you are so busy….

Breathe. Letting go of TJ is hard, but you are handing him over to the most capable, loving people at school, who will do everything they can to help him learn and grow. And here’s a little secret…. these amazing people will stay in your lives long after you leave this school, and they will love hearing about how TJ is doing, and how he is growing into a capable, flexible, independent young man. He is in good hands. Take the time at home with Peter, and give him the focus you couldn’t give him when you were so busy with all of TJ’s services. This is his time with you, and it will go so, so quickly. You two are about to make some wonderful memories together.

Brace yourself. Now that TJ is in school, a whole slew of new issues will come up that you and your school team will have to handle. But handle it you all will. Try to remember that every new issue that arises is a new opportunity for TJ to grow and learn.  Change is difficult. Struggle means progress. And these big issues now, like TJ learning how to handle the noise of an assembly or the lunchroom, are temporary. I promise. The work you all do now will pay off later. And you will be amazed what this kid of yours can handle.

You are not Superwoman, and you’re not fooling anybody. This is a really hard time. There is extra pressure on you to be everything for everyone with Sean on the road. It’s OK to ask for help, and it’s OK to not always be OK. It takes a strong person to admit she needs help.  You have three wonderful personal care assistants (PCA), hired by me and paid for by the state through a grant — use them. They are wonderful ladies — they love your boys and they love you. They see your struggle. They can help. They are there for you to take time for yourself, so you can be the best mom you can be. You will lean on them, you will rely on them and you will love them, as they will become family. Like TJ’s teachers, they will remain in your life, even as they leave to start new lives of their own.

These relationships you are making today will last a lifetime. It will be hard to say goodbye to them, but more wonderful PCAs are waiting for you to open that door to them. You won’t always have these wonderful people, so enjoy the time they give you, the help they give you and the love they give to you and your boys. Learning to take care of yourself now will help you farther down the road.

Take a lot of video of these growing boys! I know you are overwhelmed a lot of the time, and with Sean gone so much, time seems to drag. Trust me, it will soon fly by and you will soon look back in amazement at how much time has passed. These boys won’t be little forever, and you will miss those little voices. Before you know it, they will be teenagers with huge feet, deep voices, and they will be taller than you! I know it feels far away, but it isn’t. Cherish these little guys while they are little. Play. Laugh. Sing those annoying little songs. They will be happy for those childhood memories you give them. And you will be amazed at how much and how fast TJ will progress — you will need that video footage to remind you of how far you all have come! I know you can’t see it now, but trust me, it will happen.

And finally, 10-years-ago-Lauren, don’t forget to take chances. Push TJ to do things you don’t think he can do. He may struggle at first, and you may doubt yourself, too, but in time, he will be capable of things you never thought he could do. He will be able to walk home from school all by himself one day. I know! It’s hard to believe, right? Seems impossible? It isn’t. And all the work you all are doing now will make things like this possible. Oh, and those kids in his class? They like TJ now, but they will love him when he is older. Yes, social things with other kids will remain something he has trouble with. But it’s made easier by these kids who will remember being in kindergarten with him and learning with him. They will take him under their wing and give him a confidence that will serve him so well. He knows they enjoy him, and he enjoys them too, in his own way. He will even make new friends in middle school! You know, that really scary time you are terrified of? These amazing kids will make it so much easier on him. Trust me.

It’s a lot of work, 10-years-ago-Lauren, but please know it is worth it. You all will get through this difficult time, I promise.

With love and all the energy I can muster for you,

Older (and wiser, let’s face it) Lauren

mom, dad, and two boys outside
Lauren, her husband Sean and their two sons TJ and Peter

Follow this journey on Laughing… Like It’s My Job.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

167
167
4
TOPICS
JOIN THE CONVERSATION

Futuristic Robot Ball May Be the Next Big Toy for Kids With Developmental Disabilities

430
430
0

Meet Leka, a motion-sensitive ball designed specifically for kids with with developmental disabilities.

Leka lights up, vibrates, moves and makes noises to stimulate senses, all of which are designed to help with social, motor and intellectual skills, according to the company’s website.

The company notes that Leka “doesn’t replace therapy;” rather, it’s a tool for parents and caregivers “to teach through play and make therapy easier, more efficient and constant by bringing therapy home.”

The toy is not yet on the market, but a prototype made its debut at the annual Consumer Electronics Show (CES) event in Las Vegas earlier this month.

Leka co-founder/CEO Ladislas de Toldi chatted with BBC’s Leo Kelion about how he hopes the toy will help children with Down syndrome, autism and other developmental disabilities.

When asked why this was better than any other toy, de Toldi replied:

Robots are very fun, very cute and they really get the children interested. Children with disabilities are still children — they want to play, they want to have fun and the robot allows that. If you use the robot as a learning support, for learning activities and playing activities, children get more engaged in those activities.

Primary research for the toy was done in Paris, and product development was based on studies in the United States and the United Kingdom.

h/t The Autism Site

430
430
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.