How My Sister Went From Illiterate to Becoming a Published Author

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My sister, Amanda, has long been a writer at heart. When she was a baby, she used to climb the stairs and sit with me in my bedroom while I wrote page after page on spiral-bound note paper. I wrote and illustrated hundreds of pages of horse stories while my patient companion was content to just sit cross-legged on the bed near my desk, watching me, quietly coloring or just waiting.

At that time, I didn’t realize the impact this was having. Amanda, who has Down syndrome, was just a baby then. I graduated and moved away to Alaska. In the meantime, Amanda grew up illiterate. When she was around 20 years old, I moved back to Michigan and was spending lots of time with her. I sat with her in the big gold chair in the living room, looking at the back of an Eddie Rabbitt album. Amanda was a huge country music fan. I was reading the words to the song, “I Love a Rainy Night.”

She was attentive as always, and I began pointing out the letters and sounding them out. When we reached the end of each line, we would sing it.

Perhaps it was the simplistic repetition of the song, but I thought she was catching on.

Later, watching a “Hooked on Phonics” infomercial, I noticed they were using music as a foundation for their literacy program. So, I saved my money, ordered it and brought it home, along with a couple of Dr. Seuss books. Mom and Dad wisely sent the program to Amanda’s school. It helped not only Amanda, but other kids in her special ed class learned to read, too. When I asked Dad about her progress later, he said, “Yes, she is learning, but it’s going to be limited.”

I will never forget the first time Amanda stumbled through, “Green Eggs and Ham.” I was in tears. She was 21 years old by then and opening a whole new door for herself.

From that point on, the household exploded with paper. Amanda was filling every spiral-bound notebook in sight, practicing her writing in her shaky, angular cursive hand. She copied pages of old paperbacks.  Eventually she began writing her own thoughts.

A writer was born.

When finally she began journaling after our mom’s death, I asked her, “How would you like to write a book with me? We can write about Mom and Dad and our experiences with the family.”

She loved the idea. We pored over our story, building it one page at a time, editing and discussing and reading to each other. We lost Mom, and we cried and wrote. We lost Dad, and we cried and wrote some more. Our siblings battled over Amanda’s guardianship, and we wrote on in determination. We were partners in a combined effort. This was our project. During our collaboration, Amanda and I agreed on several points:

  1. People with disabilities need to have a voice.
  2. It’s important for people to get their affairs in order, to make their wishes known in a legal, indisputable way.
  3. No one has the right to take your happiness.
  4. Real love can withstand anything.

We hope that our story will help others. When I asked her if she was ready to become a published author, she said, “I cannot wait! I. Can. Not. Wait.”

So the little girl who quietly sat by has become a literary force in her own right. Unencumbered by her disability, she forges onward.

“Limited.” Indeed! If Dad could see her now.

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When My Son With Cerebral Palsy Set Out to Climb ‘the Spider’

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I came early to pick up my son today. I sat on the hard, metal picnic tables to watch Ethan climb the Spider. If you don’t know what the spider is, you most likely have never been to a playground. It is indeed as its name suggests — a climbing apparatus shaped liked a spider. It is a dome with arms like small ladders that shoot out in all directions. The child starts out on the ground and climbs on the curved arms until he reaches the domed top where he is able to just sit, stand or hang out with his friends. I am not sure of its real purpose, other than to be climbed. It is not terribly high.

Ethan had informed me this week that it was his personal challenge to climb this piece of playground equipment. I clearly can see the Spider teeming with life. It’s as if it’s a living, breathing organism because so many children have enveloped it. They race to the top. It’s as if they were born knowing how to climb it. It’s innate to them. They hang by a thread upside down with their eyes closed. Yet, there’s no fear. They trust their abilities to hang on this perilous piece of equipment because they’ve done things like this since the beginning of time. It makes me smile, and it makes me sad.

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I watch Ethan circle it, like a lioness circling her prey. He’s trying to find the perfect place to attack his nemesis. He needs space, so he waits for everyone to move. Yes, he needs the perfect moment for a climb such as this. For Ethan, it’s not innate. It might as well be Mount Everest. He takes the first shaky step… up. He places his hands on the bars and ever so carefully, he pulls his body… up.

If you look closely, you can see his feet turn inward as he climbs. The reality is most people never look that closely. They don’t look at him with the scrutiny and intensity that I am at this moment, studying his every move. I study it because I am his mom. I watch from afar.

I hold my breath as he climbs. Will he make it? You know, to the top. I don’t know. So far, he has only made it a few rungs. Will he fall? I know he could be seriously hurt if he falls. His reaction time is poor. Plus, he falls often because he has cerebral palsy. Therefore, it’s always a possibility. I hold my breath. I want to tell him to not do it. I don’t want him to climb. He’s safer on the ground with me. His balance isn’t very good. His hands are not always sure.

I want to rush out there onto the playground and push all the other children out of the way and just place him on the top of the spider. I know his teachers wouldn’t mind.  They’re great with him. They would understand. After all, he has a disability and it’s not too much to ask to provide a push for someone such as Ethan.

I want to explain to Ethan in the nicest way possible that he’s different from all the others. Thus, there are just some things in life he may not be able to do. I question: why does this harsh reality have to happen so young? In my heart I imagine me telling him that his spider may be one of those things.

I just can’t do it. I’m a good mom. So, I sit back and watch him climb. He climbs slowly, carefully, almost methodically. Will he reach the top? I don’t know. He’s never even tried a climb such as this before, and he’s never gone this far up. Will he fall? I don’t know.

Then, I’m struck with the notion that much of being a mother consists of the following skills: Love, Fear and Letting Go. With a child who has special needs, these fears are amplified. It’s as if you turned the volume up on your feelings.

I can remember when he was less than 3 pounds in an isolette. I would place my hand on his tiny body. He was so fragile that the nurses would not even seal his diaper for fear that the tape could damage his paper-thin skin. Ethan was wearing the tiniest diaper that I’d ever seen, and his eyes were covered to simulate being in the womb. However, at this moment, I had the pressing urge to feel him — his skin — to know he was indeed breathing. While watching him, I saw that his tiny being possessed so much determination and tenacity. I’d almost lost him at birth. Yet, there he was. I couldn’t help at that moment feeling he was destined for greatness.

I knew his respiratory stats on his monitors showed he was indeed breathing. However, I had to prove this obvious fact to myself. So I would place my weathered hand on his little chest and feel his body rise and fall. I would feel him breathe. It would make me feel as if everything was right with the world. I could just live in that moment forever, touching Ethan’s skin.

However, while placing my hand on his tiny chest, I knew at one point I would have to remove it. Yes, let go of my baby. If he lived or died, it was not up to me. I was just a spectator in his world. He was my champion. All I could do was love him from afar and have faith that he would indeed be OK. In turn, I would be OK. I would get through this.

I’ve done this throughout his tiny life. This feeling is an old friend to me. I recognize it and acknowledge it. It’s always there.  t was there the day I dropped Ethan off at school for his first day of Kindergarten. I can visualize that day — Ethan wearing his new shoes that glow and carrying his brand new book bag. He was smiling. Would he be OK in this new environment? Would these individuals recognize his strengths and work through his limitations? Would he survive here in the perilous world of school?  

I know I will do this again in the future. I will have this feeling again and again. If I’m lucky, I know one day he will drive out of my driveway alone with some used car that only a teenager would possess. I will stand in the driveway and wave as he leaves. I might take a few photos just to remember this moment of letting go. Then, I will return to my home and wait to see what will happen in my son’s life. Just like I’ve done since the moment he was born.

I know in my heart it will be ever so difficult waiting, watching as Ethan navigates the harsh roadways of life. However, a child will never have the opportunity to reach his full potential — his destination in life –unless I, as his parent, am willing to take the risk of letting go. Can he handle this responsibility? Will he get hurt? Will he go far?  I don’t know. But I’m excited to be a part of his journey, and in turn, his journey becomes a part of my journey.

Today, that image is far, far away, because today, I just watch him… climb.

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When I Thought Our Diagnosis Was the End of the World

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“Your son meets the criteria for Autism Spectrum Disorder.” 

Night of diagnosis Those were the words an evaluator had the nerve to tell me in my own living room on December 12, 2014 at 10:45 in the morning. I’d expected to hear those words for months but even so, my world came crashing down. The two evaluators explained that my then 22-month-old son now qualified for ABA or more hours of speech and occupational therapy through early intervention. Selfishly, in the back of my mind, I wondered how I was supposed to live with this for the rest of my life.

Would he ever speak? Would he be able to play team sports, have friends, get married and lead a fully independent life? Would we be able to do all the things we wanted to do with him? Would this diagnosis all of a sudden change who he is overnight? I couldn’t stop my head from running wild with irrational thoughts. I wanted to take my little boy and just hug him and never let him go.

The day after was the hardest day of my life to get out of bed. It was our first day of living our “new normal.” What would that Saturday morning bring? We got up that day and went about our day as usual — going to Target and then coming home for nap, lunch, etc. — all the while I was trying to hide my tears. From that day on, I began doing my research on ABA and other types of interventions we could do with him at home. I looked at adding more vitamins, going to a gluten-free diet and adding a probiotic. I immersed myself every waking moment in blogs, learning how experienced parents had made it through their first days, weeks and months. I allowed myself to cry and be sad about it, to mourn the childhood I’d dreamed of him having since I found out I was pregnant. I was mad, sad and determined. I knew the first two emotions would eventually subside. But our determination to ensure Michael would do everything any other child would do, would not. My husband and I promised we’d support each other and stand strong together instead of letting this break us down. We had our support system in place, but it wouldn’t be until about a month later when I began to realize that this lifelong diagnosis we’d just received was not the end — in many ways he was born again. 

After his diagnosis, there was a three-week transition period from early intervention to the new autism-based agency. We began to receive ABA almost immediately. We are very early into this, but in the two full weeks his new therapists have been working with him, he already has the hang of phase one of PECS, gives us high fives and looks for us to praise him. He sometimes joins us in clapping for him when he does a great job. He also can now follow simple directions — something we worked on for months prior. I know  we have a long and arduous road ahead of us, where things can change in the blink of an eye, but if I could go back to even one month ago, I would tell myself that an autism diagnosis certainly isn’t the end of the world — not even close.

Michael is going to have the awesome childhood I’d imagined for him and more important, he’s still the same loving, cuddly little boy he always has been. If possible, our love for him has grown. Through therapy and working at home with him, he’s going to be taught everything he needs to know but somehow, I believe he will end up teaching me more. 

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10 Inventions Revolutionizing the Lives of People With Disabilities

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Robot-takeover aside, we’re all for more technology — especially tech that helps make life drastically better. Here are a few examples of incredible inventions making the lives of people with disabilities easier all over the world.

1. This piano that can be played with your eyes:

Eye Play the Piano is a system that allows a person to play the piano without the use of the hands or arms. An eye-tracking device mounts on the player’s head and allows them to select keys to play using eyesight, blinking and head movements. Watch high school student Kota Numajiri using the system to participate in a school Christmas concert in the video below.

2. This anti-tremor spoon that helps people with Parkinson’s disease eat on their own:

The Liftware Base Stabilizer spoon was recently acquired by Google, according to The Associated Press. The utensil allows people who live with essential tremors or Parkinson’s disease to feed themselves and more comfortably eat on their own.

3. This app that’s helping kids with autism learn to make eye contact:

Some people with autism struggle to initiate and maintain eye-contact, so reading emotions of the people around them is more difficult. To help combat this problem, Samsung and a team of scientists developed an interactive camera app called Look At Me. The app encourages children to make eye contact with a parent or guardian through the use of the smart phone camera and helps keep them motivated through a points system, themed missions and various sound and visual effects.

 4. This car that wheelchair users can roll right into:

Having spent her whole life in a wheelchair, Stacy Zoern, a former intellectual property lawyer in Texas, understood the need for increased mobility and independence. So she quit her job to start the Kenguru car company, which sells electric, lightweight cars that wheelchair users can easily wheel into. The small electric car is designed to go around 25 miles per hour, making it ideal for getting around town but not for busy highway travel.

5. These iPhone and iPad apps that help people with nonverbal conditions communicate:

Apps like Assistive Express by Assistive Apps can be life-changing for those who can’t communicate verbally. It gives them a voice by allowing users to express themselves in a simple and efficient manner — keystroke. With these types of apps, people can participate in conversations, perform transactions with strangers or simply get their needs across to a loved one. They feature word prediction to make typing faster and a selection of natural sounding voices for the user to choose from.

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6. This font that’s helping people with dyslexia read more easily:

A Dutch graphic designer named Christian Boer created a font that makes reading easier for people, like himself, who have dyslexia, according to his website. And, he’s letting people download it for free. The font makes reading easier for people with dyslexia by varying the letter shapes of similar looking letters, such as “b” and “d.” This makes it easier for people with a language processing disorder to distinguish between them.

7. This app that allows strangers all over the world to assist the visually impaired:

A nonprofit called Be My Eyes has created an app that allows people with visual impairment to take live video of objects and writing they need help deciphering and send it to sighted volunteers who can describe the objects or read the text aloud, according to the app’s description on iTunes. A person with visual impairments can request help for anything from reading a label to identifying dangerous objects in their surroundings, all using the camera on their smartphone.

8. This belt that can detects seizures:

Created by students at Rice University and called The SMART (Seizure Monitoring and Response Transducer) belt, this device uses electrodes on the torso to sense electrical conductivity and a different sensor to monitor breathing. When the electrodes and the sensor pick up signs of an incoming seizure, a transmitter sends a signal via Bluetooth to a computer or smartphone. While it cannot prevent a seizure from happening, The SMART belt can be worn under clothes easily, making it ideal for parents of children with epilepsy to monitor their child and help keep them safe.

9. This device that can teach the tongue to ‘hear’ sounds:

A research team at Colorado State University has developed a process for using the tongue’s nerves to interpret electrical signals which represent sounds. Here’s how it works: Audio, the word “cat,” for example, is taken from an earpiece microphone and turned into electrical signals that are sent to a mouthpiece using Bluetooth technology. The mouthpiece then creates a signal or pattern on the tongue that represents “cat.” Eventually, the brain will subconsciously identify that pattern as meaning the word “cat.”

10. This harness that allows parents to walk with their children with disabilities: 

Called the Upsee, this harness system was invented by a mother so she could walk with her son, who has cerebral palsy. The Upsee is great for children with neuromuscular disorders and limited mobility because it allows them to walk with the support of another person right behind them.

Do you use a piece of technology that makes life easier for you or a loved one with a disability? Let us know about it in the comment section below. 

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What I Wish I’d Known the Day My Twins Were Diagnosed With Autism

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My twin sons were diagnosed with autism almost 12 years ago. If I could go back to that diagnosis day, I would tell myself this:

The diagnosis won’t change your kids. They are the same wonderful children, but now they have a diagnosis. The diagnosis will open doors for therapy, respite and Medicaid-waiver programs. Autism will never define them.

You will feel isolated socially. It will be difficult to take your kids to playdates or to the local shopping center. One day you will notice that many of your friends are fellow parents of differently-abled kids. They understand in a way nobody else can.

You will worry if it’s too late to start a therapy. You will worry if you can afford it. You will research, ask questions and wonder if you will ever see progress. You will discover to trust your instincts.

You will laugh out loud when your son wonders if a rude girl at school is related to Al Capone. 

You will learn to speak up and ask questions. You will learn not to care what people think of you.

You will be surprised when you discover you are pregnant again. You will wonder if it’s a singleton or twins. You will worry about where to put the baby (or babies!) in your modest home. (Can the baby live in the garage?) Everything will be chaotic, but you’ll survive. You will have gray hair and bags under your eyes. You will learn about hair color and makeup.

You will meet people who will amaze you: teachers, principals, associates and kind-hearted students. You will appreciate the work of SLPs, OTs and PTs. You will be grateful for the many people who will enter your family’s life. Without autism, your paths would never have crossed. You will be convinced that many of them are angels.

You will nearly lose your mind when you and your husband decide to drive cross-country to visit family. Your son will play the same Elf movie clip for hours on the portable DVD player. You will have car trouble. Even though your nerves will be shot, you will call the trip a success because you made it there and back without losing anyone. Plus you will still have your sense of humor.

You will laugh when your son wears his Mickey Mouse ears on top of his winter coat hood while waiting for the school bus. It will be his way to say, “Mom, take me back to Disney World.”

You will understand that your husband is the best father in the world, and you can’t imagine being on the journey with anyone else.

You will cry when your son says his first words, even though they are not intelligible to everyone he meets. You will be delighted when he gets his own AAC device and can push buttons to say, “I love you” and “I want some ice cream.”

Your heart will nearly burst when you see your sixth grade son on stage at an all-state choir, one of the few students chosen as a solo finalist. You will wonder how the world can get any better or more beautiful than it is at this moment.

You will learn that some people will never understand autism, nor will they try. That’s OK, too. You don’t need them in your world. They might get there someday. Or not.

Your son won’t always be getting up at 2:00 a.m., ready for the day. You will meet a holistic pediatrician who will help your family in many ways with diet, sleep, transition and anxiety. Some people will think you’re nuts. Trust your instincts.

You will not work a full-time job. Your children need consistency and comfort, and you give them both by being there when they go to school and arrive home.

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You will laugh when your son says he wants to go sledding because he has always liked gravity and acceleration.

Every morning you will wave goodbye to your son when he gets on the bus. One morning several years from now, he will wave back. It will be the greatest feeling in the whole world.

You will lose your patience. You will yell. You will think you are going off the deep end because raising kids with autism is difficult. You will learn to take deep breaths and go for long walks.

You will be very pregnant, shopping in Target. One of your sons will lie on the floor and scream. The other child will start crying. You will hear people whispering that you shouldn’t have another child if you can’t control the ones you have now. Continue to take your kids out in public. Eventually it will get easier.

You will be proud of your son and his athletic ability. He’ll attend Special Olympics events (even overnight events with school staff) and will come home happy and tired – with a few medals buried in his suitcase.

You will learn that despite both of your boys having autism, they are as different as night and day. One will excel in mainstream classes and will be discharged from special education. One will be enrolled in a special school for students with disabilities. People have all kinds of opinions about these decisions, but it’s none of their business. You will do what is right for your sons.

You will discover autism isn’t the end of the world; it’s just a different one.

Even when they are teenagers, you will go into their bedrooms for a brief moment in the night and watch them sleep. You will marvel at what amazing kids they are, how much progress they have made and how lucky you are to be their mom.

You will be on a roller coaster ride for years, likely the rest of your life. The highs are exhilarating, and the lows are disheartening. You’ll hold on for dear life during the sharp curves. You’ll scream. You’ll experience the thrill of wind whipping through your hair. You’ll be scared. You’ll laugh. The next day you’ll brush your windblown hair and start over again.

At times, especially in the beginning – you will feel lost. Eventually you will discover you’re exactly where you need to be.

This post originally appeared on Turn Up the V.

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A Decade With Down Syndrome: What a Difference 10 Years Has Made

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This past Saturday, we had an opportunity to see what a difference a decade makes from the day you receive the diagnosis that your child has Down syndrome.

This past Saturday, our friends Jim and Mynique McDonnell threw a birthday party to celebrate their oldest child, Parker, turning 10. It was quite a celebration.

Jim and Mynique have regularly played the hosts with the mosts over the years. Fortunately, my family is on this invite list. Indeed, we were one of the first in this circle of friends.

This is because, Parker’s parents learned he had Down syndrome, like our daughter, Juliet, when he was born. Parker’s aunt and I worked at the same law firm, and she connected Jim and I. Soon, my wife and I were visiting Jim and Mynique in their home, holding Parker and sharing what we’d learned up to that time, with Juliet being six months older than Parker.

In those early days, every parent wonders what this life holds for them. Other parents have shared their concerns of when/if their child would walk, talk, run or play with other children. It’s just such a time of the unknown and every concern imaginable can cross a parents’ mind. This is not to say that these were Jim or Mynique’s concerns, but they are common concerns.

Fast forward ten years to the scene this past Saturday, and you will see how those concerns can make us parents shake our heads almost in disbelief.

In disbelief because at this party — held at one of those jump-house indoor places — you saw boys and girls with Down syndrome ranging in ages from 6 to 10 running, climbing, shooting baskets, scaling a ladder to then slide down a huge slide, and talking, laughing and carrying on with each other and the siblings without Down syndrome.

I don’t know how many others took a moment to take it in — because this really is just the life we’re all used to at this point — but I sure did.

I remember just five years ago when I would have been moving through the same obstacle course to help Juliet wind her way through the tubes and slides, her mother ever watchful, noticing every move to make sure Juliet didn’t take a tumble. Now, five years later, her mother went out with her girlfriends to a nightclub while I barely knew where Juliet or James were throughout the whole party.

This is not to say each of these kids have not faced their own challenges. Juliet is unfortunately in what seems to be an every-other-year down cycle at school; another little girl had to travel to a specialist to disconnect a tethered spinal cord; some of the other kids have behavior issues that are being addressed; and Parker has received special instruction and hearing aids to minimize the effects of congenital hearing loss.

But, even listing those conditions would ignore that Juliet’s brother, James, had a down year at school last year and had an MRI as an infant because of a possible tethered cord. I spoke with a mom there who would be a teacher for a close family member of mine who is attending the mom’s school for children with behavioral issues (and this family member only has 46 chromosomes). And during the time for pizza and cake, I saw a fellow father sign to his daughter some words, not because his daughter was hearing impaired, but because she had learned sign language as a child and that is an effective means of communicating across a loud room.

So, some of the same challenges faced by those children with Down syndrome have been faced by their siblings and family members without Down syndrome.

This group of parents used to meet once a month at Down Syndrome of Louisville (DSL) when our children were just babies. We would sit in a circle and exchange tips on therapies and share concerns. Then, our children attended weekly group developmental intervention therapy classes, readying them for preschool and kindergarten. Now, they attend school-age programming once a month.

None of this – absolutely none of this – could’ve been envisioned when Juliet and Parker were born ten years ago.

At that time, the concerns outweighed the dreams, at least for me. I worried about Juliet meeting developmental milestones as a child, thriving in school, having true friends. I couldn’t see that Juliet would introduce me into an entire circle of friends I probably would have never met otherwise, or that those friends would be some of the strongest friendships because they were forged during times of trials with each of us supporting the other.

And, I couldn’t have envisioned that it would be my son who chose to play with Parker almost the entire evening and on the ride home, say more than once:

Parker’s awesome.

Indeed he is.

Happy birthday, Parker.

What will the next ten years hold for all of us?

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James, Parker, & Juliet

This post originally appeared on Down Syndrome Prenatal Testing.

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