Why I’m Congratulating Myself After My Son’s Public Meltdown

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I haven’t always been vulnerable. Autism made me this way. It’s not a complaint, just a fact.

A week into his summer vacation, my son, Jack, told me he was bored. Well, he typed to me that he was bored. On November 7, 2012, our world was been turned upside down when our otherwise nonverbal son spelled out on a stencil board, “I am trying” and “I am really smart.”

Jack has progressed to typing on an iPad, and we can have some pretty productive conversations some days. It’s not, however, all rainbows and flowers now that Jack can type. He still has autism. And, quite frankly, it affects him tremendously. It sucks.

He types that he wants to learn on a regular basis. I appreciate his eagerness to learn, but when he typed he was bored, I decided we needed an adventure. Adventures in “autism-land” require a lot of patience and time. I need to be mentally ready for the stares. (We attract a lot of attention just with a service dog. But add in headphones and a kid who weighs 115 pounds and still holds Mom’s hand? People stare.) There’s also always the potential for aggression. This is just a part of Jack’s autism, and it ebbs and flows depending on a long list of items that may or may not be present. I need to be ready to have Jack’s impulsivity take over just when I think everything is going smoothly.

He likes history and battles, so I thought a trip to the Gettysburg Battlefields, only an hour away, was perfect. I enlisted the help of his amazing sisters. They were dead to the world in a teenage slumber when I happily announced, “We are going on an adventure!” Kudos to them — they came with little to no complaining. I was pumped. I could do this!

I was immensely proud of how the girls handled the stares and mumblings from bystanders. The “special” attention we get is a bonus from my perspective — preferred seating, fast service and going to the front of most long lines. For my teenage daughters, however, it just makes us stand out even more.

Our afternoon is going along swimmingly when, just like that, it starts. The aggression. Hair pulling, pinching, grabbing and screaming. Imagine the scene. It doesn’t look right when a kid pulls his mother’s hair. It doesn’t look right when a kid grabs his sister’s face while the other family members quietly try to pry his hands off her. It doesn’t look right when a big boy is having a tantrum equivalent to that of a 4-year-old.

Herein lies the vulnerability. To be in public, I have to admit we are a different family. We are louder than most, and sometimes, our behavior makes people stare with crazed eyes and mouths agape.

But today, I am congratulating myself for doing it. Our day ended a bit earlier than I predicted, but I put us out there, and we all handled it like champs. Autism might suck some days, but my family rocks every day.

This post originally appeared on Hardly Getting By

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10 Reasons You Should ‘Light It Up Blue’ on World Autism Awareness Day

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In 2007, the United Nations declared April 2nd of each year as World Autism Awareness Day. A few years later, a global autism awareness initiative to honor the day was born — Light It Up Blue. Every April 2nd, people all over the world “shine a light” on autism by wearing blue, making their social media profiles blue for the day or shining bright blue lights outside their homes.

My personal connection with this day started almost 23 years ago when I was diagnosed with autism. I dealt with countless obstacles. I wish I’d had a “Light It Up Blue” campaign to start a pivotal conversation about how to improve the lives of those with autism.

Today, I can say I’ve overcome many of my obstacles. I’ve become a national speaker, a bestselling author and an employee with Autism Speaks. I now work closely with the Light It Up Blue campaign, and it’s been a dream scenario in many ways. I’m proud to report that for the third year in a row, the city hall in my home town, Jersey City, New Jersey, will be “lighting up blue.”

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In honor of the day, here are 10 reasons I believe you should go blue on World Autism Awareness Day.

10. More than 3.5 million Americans and counting are living with autism. This year, in all our materials we’re making it our mission to tell people that we’re dedicating this campaign to helping them as much as we can.

9. To help encourage our politicians to enact legislation in all 50 states that will help people living with autism. By “lighting it up blue,” we can raise awareness about autism to our public officials, which will hopefully initiate more of a push to help our community.

8. It helps support autism research. Autism Speaks has been around for 10 years now and has put $525 million dollars toward our mission. We want to help find out what causes autism so we can help people with autism progress.

7. It’s a great way to meet new people in our community. This April 2nd, you’ll probably find one or two people who are either wearing blue, posting about blue on social media or lighting their houses blue. When you do this, you open yourself up to engaging with our community in a unique way.

6. The blue lights look amazing. Buildings and events all over the world went blue last year. Some of the most iconic landmarks in the world have gone blue, and it’s a beautiful sight every year. Using blue Phillips light bulbs at your house looks just as cool.

5. It’s fun! This year, Autism Speaks came out with a Light It Up Blue “selfie sign” that people can use to tell us where around the world they will be going blue.

4. It shows those in our autism community that they’re not alone. Many times when I consult with parents who have loved ones on the spectrum, they mention they feel alone or not part of the community. Even if you’re not personally affected by autism, you can show your support with Light It Up Blue and give people who are affected a light to look toward.

3. It supports people like me. I wish more than anything that Light It Up Blue existed when I was diagnosed with autism at age 4. Now when I see people go blue, I see that there’s so much awareness being spread around to help those who know or are personally affected by autism.

2. Approximately 500,000 individuals with autism will reach adulthood within the next decade. When we “light it up blue,” we have the opportunity to share with our community that autism is a lifelong disorder and kids with autism are growing up before our eyes.

1. It can help start a conversation. More than anything else, we hope Light It Up Blue will give us the opportunity to educate the world about autism and help better our community.

Need help getting started? Click here to learn five ways you can Light It Up Blue on World Autism Awareness Day.

Register here to tell us where you will be “lighting it up blue” this year.

This post originally appeared on KerryMagro.com.

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When Someone Told Me I Had the ‘Good Cancer’

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Good and cancer shouldn’t be used in the same sentence, period. Yet I heard it multiple times last summer after being told I had cancer. I sat there in disbelief. Not because I had breast cancer (I have been waiting for that shoe to drop for a while), but because there was absolutely nothing good about having it.

My experience has been that some doctors and medical professionals might use this phrase in an effort to soften the blow. Saying you have the “good cancer” is a way to make you feel better about where you fall on the spectrum of survivability. But for me, being told I had the good cancer diminished the disruption to my life, and the permanent changes to my body, that this disease would bring. While the intentions are good, it is misguided.

Does that mean that my mom had the bad cancer because she eventually died from it? Let’s say for argument’s sake I have a better type of breast cancer than she did. After all, my diagnosis revealed that I was only stage I and although my cancer was invasive, it was relatively small. I also have tubular cancer, which is a slow grower. The chances of it having spread outside the breast were pretty minimal. I was even told I could get away with a lumpectomy and only six weeks of radiation.

I suppose that is all good, but I still wouldn’t say I have the good cancer. For treatment, I elected to have a double mastectomy. Some might say that was a pretty aggressive choice. However when my mom was diagnosed 20 years ago with breast cancer, I was bumped into the high-risk category. Since then, every four months like clockwork, I have been checked. It has been a never-ending cycle of mammograms, ultrasounds and MRIs. In recent years, instead of feeling like I was taking care of myself, I began to dread these appointments. I worried that this would be the time my ticket was pulled.

When my last biopsy came back positive, honestly, I wasn’t surprised. My doctors had been watching that spot for a while. Having this cancer diagnosis finally gave me the permission to put an end to the routine check-ups and the worry that came along with each and every one of them. Choosing a lumpectomy would have still caused me to look over my shoulder. I would have always be waiting for the report to come back telling me I had another tumor. I have sat in the radiology consultation room enough to know that I just wanted to be done.

It has been six months since my life-saving, life-altering surgery. A double mastectomy with immediate reconstruction is no walk in the park. Despite lengthy discussions with my physicians, I was in no way prepared for the way I felt in the weeks and months post-surgery. Cancer wreaks havoc on your whole being, your life and those closest to you. It has no mercy. It doesn’t matter that I have the good cancer.

Recovering has been difficult both physically and mentally but I am healing and adjusting to my new normal. In all likelihood, I will live a long life and die of something other than cancer. That is good, but I will never accept that I had the good cancer. There is just no such thing.

dana freeman the mighty

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How I Learned to Stop Being My Son’s Nurse and Start Being His Mom

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I’m a nurse and a mother. For many years, I prided myself in keeping the roles separated. Sure, both are caregivers performing tasks… but as a nurse, I distanced myself emotionally from patients. It was a form of self-preservation, a manner of coping that enabled me to help people. I felt like a superhero by day and vulnerable mother by night.

My worlds collided on December 9, 2014. My third son, Donovan Grant, was born with Pierre Robin Sequence. Donovan was briefly placed in my arms before he was taken to the NICU for respiratory distress. I was robbed of my bonding moment.

I quickly transitioned from vulnerable mother into nurse mode and emotionally distanced myself to cope with his diagnosis. I put my game face on and prepared for battle. I became task-oriented and introverted. I avoided contact with friends and family. I turned away visitors and opportunities for “company, a listening ear.”

I said I needed to focus on Donovan’s health, but I was afraid. I feared I would see pity in their eyes. How often had I, as a nurse, done the same when caring for families of special needs children, looking at them with pity? I feared they would see the flaw in my armor.

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I buckled down and consumed myself with Donovan’s biggest hurdle: eating. I obsessed over small volumes. I found a sense of calm in my focused state. I was a great nurse and we were rewarded with an early discharge from NICU in time for the holidays. As the NICU nurse walked us out with Donovan’s apnea and cardiac monitors, I lost it. The wall I had built up began to crumble… reality settled in.

I wasn’t clocking out of a shift; I was taking this patient home. He was my son.

Fast forward to three weeks later when we had our first appointment with Donovan’s craniofacial team. I fully anticipated we would schedule Donovan’s cleft palate repair by 3 months of age, after which he would be “fine” and we could get on with scheduling summer vacations and “normal” family life.

Reality check…

We left the appointment with an open-ended plan to “tweak” Donovan’s feedings and return to the clinic in a month. I cried. I was disappointed. I was confused. I was selfish. I’d invested so much hope in this follow-up. I had been naive. I thought we’d be rewarded with an “end in sight,” a scheduled date I could mark on the calendar as the return to normalcy for our family. January 6th was a memorable day; it was the day I grieved the normalcy that “had been” and realized life would never be the same.

I’d been shell shocked, and the days that followed only got worse. The ENT called us the next day to check on Donovan. He said he was genuinely concerned and advised that we admit Donovan to the hospital for airway management.

We packed for a weekend getaway. Donovan ended up in the hospital for thirty-five days. The initial intervention was unsuccessful; Donovan needed surgery. Our ENT proposed a procedure that was fairly new and innovative; he said he had discussed Donovan’s case with his mentor after our first meeting. He said when he looked in Donovan’s eyes he saw fear; Donovan couldn’t breathe. He deserved a better quality of life.

I was overwhelmed with fear and guilt. The past three weeks I had been Donovan’s nurse; I’d been task-oriented and emotionally distanced. I felt I’d failed him as a mother. I’d been in denial, too scared to tear the wall down and connect with him. I allowed his condition to obstruct our relationship. I was afraid to feel, afraid to be vulnerable in the face of something I had no control over. I was afraid of his diagnosis. I was afraid to be his mother.

Donovan was on a ventilator for 6 days. For what felt like an eternity of time I sat vigil at his bedside as a mother. I could no longer provide him the nursing care he needed. I jumped headfirst into the tide of emotions. I cried, I questioned, I bargained, I cursed.

I grieved everything that was and everything I had envisioned our future to be. I forgave. I accepted.

The day Donovan came off the vent was like a rebirth for us. Donovan took his first breath, I heard his first cry, and they placed him in my arms. I lived in the moment. I took him all in. I embraced the fear of uncertainty. This time I was ready to battle disability and disease, not as a nurse, but as Donovan’s mother.

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What My Son’s Misdiagnosis Taught Our Family

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The day Ezekiel was born, the neonatologist warned us he probably wouldn’t come out breathing. We were going to see him and say goodbye. But to everyone’s surprise, he took his first breath.

His initial diagnosis, based on his brain MRIs before and after he was born, was the severest form of muscular dystrophy. For the past year, we have been on an online forum with parents, especially moms, and have mourned with them the loss of their children who have this diagnosis. We have had this dark cloud over our thoughts for a year and have thought each day that Ezekiel’s life may be his last.

We recently discovered that he was misdiagnosed. We went to a NIH pediatric neurologist who is an expert in different disorders. We also had blood testing done and found the answer. Ezekiel doesn’t even muscular dystrophy. He does have brain issues, but his muscles are normal. The doctor explained that his brain doesn’t send correct information to his muscles on what to do. He also most likely won’t have breathing problems, according to this doctor. We asked the NIH specialist what his life span would be and he said he doesn’t know, but it could be a much longer time than what we had thought for this past year.

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Ezekiel has taught us so much over the past year. If we didn’t experience his birth and life, we wouldn’t have learned to value the frailty, and miracles, of life. We now see suffering people and children much differently… with a truer compassion and empathy. Things that used to concern us are not very worrisome anymore. Much anxiety and fear have left us because we let go of the control we never had in the first place.

If we heard this news 10 months ago, any news would be devastating. This has brought us a new peace. We know he may not live many many years, but we believe that God allowing us more time with him is such a blessing. It may not be a smooth journey, but we believe it’s what God planned for us and we are privileged to walk this path, with his help.

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The Scary Moment That Made Me Stop Hiding My Epilepsy

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Dear Juvenile Myoclonic Epilepsy (JME),

I don’t know where to start when I begin our story. It’s so personal that sometimes I feel like I’m talking about an old friend more than I’m talking about… well, you.

It took me so long to talk about you at all, that there are still times I don’t even know how to talk about you at all. When you first came to visit me, I didn’t know you were there at all. I just remember the feelings of frustration and extreme irritation, which were completely normal for a 14-year-old girl.

All the doctor’s appointments that were confusing to me, but seemed so completely necessary to everyone else in my life, I tried to keep them a secret. Just like I tried to hide you. I was a child still, not ready to accept that I was changing in yet another way. I only wanted to focus on what I could control, and I definitely had zero control over you and what you were doing with my mind and my body. I ached for some type of normalcy in my life, but you were just not going to allow that to happen.

The doctors diagnosed me with you, but they didn’t know the type until much later. Sleep studies, EEGs, and more tests. Different medications when one didn’t work the right way and my life began to seem like an upside-down merry-go-round. My high school was notified about you and I looked for a hole to crawl into, hiding you from my friends, hoping that my teachers were unaware.

In 2005, long after being diagnosed with you and finally given the type for quite a few years, I was on my way to the hospital in an ambulance in a state far from my family. They didn’t know I was on my way there and they wouldn’t know until I was out and back to where I was staying.

That woke me up: being far from my family, and having one of your appearances. I hated you for so long; I hid you from the world. Then I realized if I kept on like I was, that you could do far more than just “embarrass” me a little to someone who was uneducated about you. I finally found a better doctor, moved back to where my family was, and got medication that would help me properly. Since then, I haven’t had but a few minor appearances from you. But I know you’re still there.

suzette gorrell the mighty

You’ve been with me for 22 years now, almost 23, and I’ve learned a lot about you and from you.

Thank you for allowing me to do all I have with you. While I could do a lot without you, I do plenty with you as a part of who I am. Let’s keep our relationship just the way it is now. I’ll do my part, and you stay just how you have been.

No rearing up to remind me you’re there… I can feel you there.

Sincerely,

Suzi

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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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