My 4 Words for the People Who Doubted Me Because of My Autism

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I wrote this letter in 2011 the day after receiving my college degree. So many people told me it would never be done in my life, and I wanted to share it with the people at The Mighty to inspire hope that our kids are capable of amazing things. This one’s for you…

Yesterday was my graduation from Seton Hall University. Because this has been one of the most emotional and happiest days of my life, I’ve taken some time to reflect on my journey and get my thoughts down on paper. Many people told me my road toward a good education was going to be rough. The word “impossible” was a word I learned very early on in regards to people’s opinions about whether or not I could get to college, let alone graduate from college. Now I just have to say…

To the physician who told me when I was 6 that I would be lucky to get to high school, this one’s for you.

To the special education teachers who looked down at me like I was broken, this one’s for you.

For the years of being taunted and bullied by kids, saying I can’t and wouldn’t achieve greatness, this one’s for you.

To the people who helped me through physical therapy, occupational therapy and speech therapy until I was 14, this one’s for you.

To my parents, friends and relatives who see me as an individual first who is/was never broken, this one’s for you.

To those teachers who said I could do it, this one’s for you.

To the countless other individuals out there who are autistic or love someone who is autistic, this one’s for you.

To the people who say you can’t do something even though you can, this one’s for you.

At the end of the day, the influences in our lives send us on our path, either good or bad. When I was 4, I was diagnosed on the spectrum. Now 18 years later I’m a college graduate who will be going to graduate school for a Master of Arts in Strategic Communication and Leadership. For all those people, again, the good and the bad, thank you. You’ve made me who I am today, and I wouldn’t have it any other way.

This one’s for you.

A version of this post originally appeared on Kerrymagro.com.

Kerry contributed a chapter to a new book titled “College for Students with Disabilities: We Do Belong” where Kerry talks more about his pursuit of becoming a national speaker and getting through college with a learning disability. The book was authored by Stephen Shore and Pavan John Anthony with the forward written by Dr. Temple Grandin. You can learn more about the book here.

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Joy Spreads Across This Girl’s Face as She Uses Her Prosthetic for the First Time

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The look on 8-year-old Isabella’s face when she uses her 3D-printed prosthetic arm for the first time is like Christmas and her birthday all rolled into one.

Isabella’s cool new purple, pink and green arm was built and delivered by a man named Stephen Davies who volunteers for E-NABLE’s Team Unlimbited, according to the YouTube video below. E-NABLE is a global network of volunteers who use 3D printing to create prosthetic arms and hands for kids.

It wasn’t until Isabella successfully picked up her first object with it, at the 1:40 minute mark, that the joy really spread across her face.

Watch the video below to see Isabella get her new arm:

h/t Reddit Uplifting 

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To Everyone Who’s Helped Me Through My Mental Illnesses

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I am alone.

I am scared.

I am worthless.

I am unlovable.

My depression starts out as a soft whisper. So soft, I can’t hear it right away. But it waits. My depression is patient. The longer it waits, the louder it becomes. So loud that I can’t do anything but listen.

My depression wants me to hide.

My head is spinning. An endless sea of thoughts swirling through my head. Thoughts of yesterday, thoughts of today, thoughts of tomorrow. Random thoughts. Thoughts of you. Thoughts of me. Thoughts of us. Thoughts of them. More random thoughts. Thoughts trying to make meaning of other thoughts.

Just stop thinking. I can’t stop thinking. My brain won’t stop. The thoughts are getting louder and spinning faster. Why can’t I stop thinking? I have to find something to stop these thoughts.

My anxiety needs me to hide.

Ouch, that hurt! Oh, it was just the wind blowing, I’m OK. I’m safe. Wait a minute, why does the wind hurt? Why does everything hurt so bad? I’m not safe. Someone stole my skin. All of my nerve endings are exposed. I’m feeling things I’m not supposed to feel. I’m in pain. I have to stop feeling.

My post-traumatic stress disorder is forcing me to hide.

So I hide. I hide behind the bottle. I hide behind the blood. I hide behind the scars. I hide behind the pills. I hide behind the food. I hide behind the empty stomach. I hide the way I’m hiding. I hide the monster I think I’m becoming. I hide.

But you see me. You see the empty bottles and unkempt hair. You see the fresh scars peeking through the tightly wound bandage. You see the mess that I’ve created, the mess I’ve become. You see me. And you’re still here.

You see past the disheveled look and confused gaze. You see past the thick walls I build up around me. You see past the depression and anxiety. You see past the pain. You see past the ugly ways I cope with the pain. You see it all, you see past it all and you see me.

Thank you for seeing me.

Thank you for looking in when you wanted to look away. Thank you for reaching out, even if you knew I wouldn’t reach back . Thank you for staying when leaving made more sense.

Thank you for giving me life when I was so close to death.

It was you. You were the one who saved me. You saw me when I couldn’t see myself. You walked in when I shut the world out. You believed in me when I had no faith in myself.

You loved me when I felt unlovable. You breathed for me when I had no breath. You lit the way when I saw only black.

You cried for me. You cried with me. You fought for me. You let me go.

You held my hand when it was shaking. You were my feet when I couldn’t stand. You lifted me up when the world crumbled beneath me. You gave me hope when I was hopeless.

You are my mother. You are my father. You are my sister. You are my brother. You are my husband. You are my friend. You are my son.

You are my therapist. You are my teacher. You are my doctor. You are my coach.

You are the woman who sat next to me in the waiting room. You are the stranger who smiled as we passed on the street. You are the boy at the checkout who asked about my day. You are the mom whose nod said, “Me too.”

Thank you to all of the beautiful souls in my past, present and future who give me moments of connection that make life worth living.

I am me because of you. I am alive because you looked a little bit deeper, leaned in a little bit closer, loved a little bit harder and held on just a little bit longer.

You are the pieces that keep my heart beating.

Thank you.

It wasn’t just one person who helped me through my mental illnesses — it was several. Some I know well. Others crossed my path once. Still others continue to help me on a daily basis. My mental illnesses try to rob me of the one thing I believe humans are wired for: connection. Someone looking me in the eye when I feel invisible gives me strength to get through just one more day. Connecting with a friend in a deep, intimate way gives me worth when I feel worthless. Hearing someone say, “Me too,” when I feel like no one understands heals me in the most profound way.

Human connection.

One moment is all it takes.

Be kind. You never know when your smile could save a life.

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How a Dental Visit Inspired My Son With Autism to Ask This Question

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“Mom, why can’t everyone be kind?”

That plaintive question had been prompted by, of all things, a visit to the dentist for my son’s semi-annual teeth cleaning appointment.

While our family has been blessed with some pretty incredible people in our lives, there are always those whose words and actions wound deeply. Unfortunately, when public excursions are involved, you never know what sort of response you’ll receive.

Our dentist’s office is chock-full of amazing professionals, all of whom regularly go out of their way to accommodate the extra time and effort that may be needed for caring for a person on the autism spectrum. Even though I knew I could expect an overall pleasant reception when I brought my son for his appointment, I wasn’t at all prepared for what we encountered.

Less than a minute after we had arrived for my son’s appointment, a sweet, grandmotherly-type woman came into the waiting room, introduced herself to us and then sat down in the chair opposite me. With a giant smile wreathing her face, she asked me if it was OK if she chatted with my son.

Slightly surprised, I gave my assent and then watched in awe as this amazing woman brought my son out of his shell.

Overlooking his constant jerky movements, she asked him the perfect questions about himself — what games he liked, what Lego creations he had built recently, what his favorite foods were and who he thought the best Marvel superhero was. I watched my son come to life, speaking with such excited animation that I initially moved to give him a shoulder pat, which is our signal in public for him to calm down. The sweet lady saw this and put her hand out to stop me, telling me that it was perfectly OK, and that she was happy that he was happy.

She then told my son if he was ready, it was time to go back for his teeth cleaning. As my son happily started to walk away, this incredible lady leaned closely to me and whispered, “It’s OK. My grandson has autism, too. Aren’t they the sweetest kids?”

And with that, she smiled once more at me, patted me on the shoulder and walked toward my son.

On the ride home, my son asked me, “Mom, why can’t everyone be kind?”

The kindness he had received from a stranger made such an impact on him that he asked me to write and tell everyone they should be kind to other people because everyone deserves to be shown they matter.

What if we all made a pact that we would go out of our way to show kindness and exhibit grace in action to other people?

What if we use the knowledge we have gained through walking through our own experiences to help other people?

What if we decided to knowingly be “that” person who gives hope to those who are struggling and provides words of encouragement to people who are starving for any indication that they’re doing well?

What if we showed love to the people who don’t go out of their way to show love to us?

What if we chose to speak an encouraging word, telling someone they’re doing a great job?

What if we chose to smile at strangers, rather than just go about our daily tasks in our always-hurried fashion?

What if we provided a helping hand to the mom struggling to calm her child who is experiencing a meltdown in public or to the individual in crutches struggling to carry packages?

What if we simply chose to be intentional about showing kindness?

We all know what it’s like to be on the receiving end of unkind words, actions and deeds, some intentionally delivered and others delivered out of ignorance. We hopefully also all know what it’s like to be treated with kindness and dignity and to be shown love and grace. Where the first experience wounds deeply, often leaving lifelong scars, the second one provides a healing balm for the heart, soothing hurt places we might not have realized were damaged.

I know that those who may be facing challenges brought on by illness, limitations or disabilities — or who have the dual task and joy of caring for others with those life-challenging situations — often feel like we are scraping the bottom of the barrel ourselves and have nothing left to give to others. But if we only took a moment to remember how it felt when someone else went out of their way to be kind to us or to our loved one, then we might just be able to reach down and tap into some of that incredible strength we never knew we had until life’s circumstances caused us to reach new levels of endurance and perseverance that we wouldn’t have thought possible.

My son wants me to ask you to accept the kindness challenge, choosing to show kindness to others, because each person matters.

I am accepting the challenge.

Will you?

M3361S-3034

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The Most Powerful Word to Me as a Special Needs Mom

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My daughter, Afua, doesn’t walk…yet.

Afua isn’t communicating with signs…yet.

Afua is not drinking from a cup…yet.

I find myself using these phrases at doctor’s appointments, school meetings and discussions with friends or relatives. I can’t seem to say the first part without adding the word “yet.” I wonder if my “yet” is viewed as a mom who is unhappy with the way things are or if they truly understand my feelings behind using the word.

Right now, the word “yet” gives us power to hope for Afua’s future. It gives us permission to say that we know more miracles are around the corner. That the hours she works so hard in therapy each week are for a purpose. And we hope she will get to experience new things as a result of that hard work.

Yet, if nothing changes, if nothing improves, if life tomorrow is exactly as the days before, she is loved just the same. Her performance is not a measure of her worth.

So I guess this is really the heart of parenting a child with special needs. We live in the moment, we hope for the future and we constantly worry that our moments with our kids will be cut short. Balancing all these feelings is 90 percent of my journey.

Follow this journey on Joyful Journey.

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Deciding When Not to Treat Our Child With a Degenerative Disease

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In most areas of my life, I prefer to regret something I have done rather than regret something I haven’t done. But when it comes to my 6-year-old son with Menkes disease, this — like so many issues — doesn’t fit the norm. When you face a degenerative disorder in your child, a lot of measures get turned on their heads. The expectation can’t always be to make things better since we know the longterm path involves things getting worse. Things are going to stop working as they should. So how do we decide which of those things are preventable or can be stalled, and which medical interventions are not worth the risks?

Recently the problems with Lucas’s hips and spine went from minor to severe. The hip that would chronically dislocate was now permanently dislocated, and the previously normal hip was chronically popping out of place. His spine curvature had greatly increased, and we began to fear his positioning due to a question-mark-shaped spine might compress his internal organs.

Two surgeries were recommended: one for the hip(s) and then later for the spine.

Most parents think they’d do anything to help their child. My wife and I think so, too. But we had a gut feeling that maybe the treatment would be worse than the problem it would fix.

We think Lucas has a diminished sense of pain; he rarely complains from any discomfort. Maybe his nerve receptors are under-developed along with his brain, muscles and bones. (If so, what a welcome silver lining to this horrible disorder.) So his hip, despite being visibly “wrong,” wasn’t uncomfortable to him. He doesn’t walk, or sit unassisted, so he doesn’t absolutely need the hip to function normally. As for the spine issues, we checked in with his specialists and each told us that so far, it wasn’t impacting the function of his organs. The curve happens low on his spine, so his lungs, bladder and kidney are all so far so good.

If Lucas was constantly crying out in pain, we might have rushed him into surgery. But the surgery recovery can be long for patients in normal health. Lucas tends to recover three times more slowly than normal. For a child expected to have a short life, did we want him to have several months of it spent in hospitals?

Add in the risks of any surgery  maybe it goes badly, maybe an infection sets in — and we were not just afraid to move ahead but also questioned the value of these interventions. We didn’t want to kid ourselves either. Would we stick our heads in the sand and hope for the best despite being told things would get worse? But by now, we take it as given that some things will eventually get worse. Should we fight to stave off all of them?

We did not decide this lightly. We switched our insurance so that we could visit other doctors at a different hospital for additional opinions. We drove hours and spent nights away from home to make those appointments. Some doctors said yes, some said no to surgery. Many more remained neutral, reminding us it was our decision.

Lucas can’t talk, so he can’t tell us his choice with words.

What haunted us (and still does): would we kick ourselves more if we did nothing and eventually saw things get worse, or if we did the surgeries and things got suddenly worse?

We have been extremely fortunate that for nearly two years, Lucas has been in great spirits and good health (his version of good health). He’s had nothing worse than common colds and flus to contend with if you discount the hip issue. Hospitalizing him, with risks of aspiration or ending up with a tracheotomy, seemed so much harder a decision given how happy he’s been lately. I began to imagine an outcome where we’d trade a bad hip he didn’t really need for a bad windpipe he really does need. If fixing the hip left him with a trach, was that a good trade-off? Was that progress toward a healthier boy? Never mind that the day will likely come that Lucas does need a tracheotomy; I just didn’t want to cause that day to be tomorrow.

We wrestled the pro and cons back and forth for several months, gathering more medical advice along the way. Eventually we both found some peace in the decision that doing less would help him more. Early on after his diagnosis, my wife and I decided we wanted greater quality of life for Lucas, not necessarily greater duration of life. We also told ourselves “no extreme measures.” The catch there is that those measures creep up incrementally and don’t often seem extreme in the moment. Sure enough doctors tell us this surgery is a risk but not an extreme measure; they do it all the time on kids more fragile than Lucas, too. I believe that. But “extreme” is still subjective. A day may come when we face more pain for Lucas and regret not intervening earlier. Maybe by then it will be too late to attempt some of the options for treatment we have now.

Deciding not to “help” our son has tormented and terrified us. But watching him live each day pain-free and happy, we can’t take the chance of changing that. Not today anyway. As always we’ll face tomorrow, tomorrow.

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