The Arc of Erie is very active in our community. Here in our blog, you can learn about where we have been and what we have been doing around town. We share photos and stories to help others understand our role in the community, and to improve support services available for individuals with intellectual and developmental disabilities.
July 2019 – Hello superheroes! We are so excited to continue this blogging tradition getting ready for our Step Up Erie Race 2019! We have so many wonderful, inspiring, and heartfelt stories to share with you this year that you will not want to miss. Thank you for visiting our blog and supporting our families.
7-15-2019 Meet Karen Morahan and her son, John. Karen was a longtime board member and at one time, the Arc’s president. Her story of her son, John, is heartfelt and inspiring to read. Thank you, Karen, for sharing your story with us. We agree that John is an incredible superhero who has won the hearts of many.
John: Captain Authenticity, Persistence and Empathy
A superhero is a person who does heroic deeds and has the ability to do them in a way that a normal person could not. So in order to be a superhero, you need powers that are more exceptional than any power a normal human being could possess. Ultimately, you need to use that power to accomplish good deeds. Like every superhero, John has super powers that make him who he is.
John is the purest, most genuine person you will ever encounter. To be around John, you must accept straightforward, unfiltered commentary and discussion. He speaks without regard for political correctness and cannot candy-coat his thoughts and only knows speaks truthfully. Knowing his penchant for brutal honesty can make it a bit uncomfortable at times but then again, the world would be a better place if we all could speak with such candor.
John’s super power is authenticity.
To understand what getting around in daily life is like for John, you must understand the physical challenges he faces. Imagine what it would feel like to move around every day as if you were going through water. John’s low tone makes all physical activity hard. Despite this, John pushes himself to keep up, try his best and please. If we could harness a fraction of that tenacity, could you imagine what we would be capable of?
John’s super power is persistence.
John inspires, makes you cry through joy and gives unconditional love. John feels deeply and emotionally connects to people. He senses sadness, understands frustration and freely consoles anyone needing comfort. John will be your biggest supporter and champion. He may not always have the words to say what he is trying to communicate but you will always know what he means.
John’s super power is empathy.
Authenticity, persistence and empathy are John’s super powers and he has taught us so much in his 12 years. You need to ‘experience’ John to understand the full extent of his powers. He has brought many other superheroes into our lives and we are truly blessed. I could not imagine a world without Super John and the world is a better place with him.
Meet our very own Karen Potocki, one of the Arc’s board members and chair of the LEADS (Lake Erie Area Disability Support) Group. She shares her story of her son, Ethan, and his “supernatural ability to disarm people of a bad mood and protect the public from the evil walls that divide them, while battling the super-villain of epilepsy.” We loved learning about Ethan and his army of superheroes that surround him, and we know you will, too!
Ethan: Captain Joy
Wikipedia defines a superhero as a “type of heroic stock character, usually possessing supernatural or superhuman powers, who is dedicated to fighting the evil of their universe, protecting the public, and usually battling super-villains.
Ethan’s most notable superhuman power is his supernatural lack of inhibition, which gives him the ability to disarm grumpiness. He does this to his closest family and friends on a regular basis, making us bust out laughing at the most unexpected moments.
On a walk around our neighborhood, EVERY person who is out of their house gets the same exuberant greeting at full volume, “Hi! I Ethan! I nine! Nice to meet you!” While driving through for a quick meal, his enthusiastic greeting from the back seat can transform the mood of even the most stoic of fast food restaurant employees. Wherever we go, he is constantly bringing smiles to faces like no one else I know. Before departing an airplane, he bear hugged a middle aged man who was on his way home from a bachelor/golfing weekend. While we were eating in the food court at the mall, he hopped down and ran over to greet the person who was clearing tables and sweeping the floor on the other side of the eating area… clearly transforming the demeanor of a person the rest of us hadn’t even noticed. Sometimes we wonder if he has a sixth sense about who really needs a greeting, hug, or high five that day. But on any given day, couldn’t most everyone benefit from a cheerful, uninhibited greeting from a cute kid with freckles and curly red hair?
In addition, Ethan can powerfully break down the walls that separate groups of people. He doesn’t care or even seem to notice what people are wearing, how smart they are, how rich, how educated, how attractive, the color of their skin, their sexual preference, etc. None of that matters to Ethan. People are people, and he loves to talk to anyone and everyone.
He’s extra thrilled if the person smiles, says something (it doesn’t matter what) in return, or gives him a high five or fist bump. Walls crumble immediately with one of his boisterous and cheerful greetings.
Don’t get me wrong, Ethan’s lack of inhibition can be problematic and cringe-worthy (and exhausting) for those of us who care for him. For example, in his eagerness to greet neighbors walking by (especially if they have a dog with them), he will eagerly bound out of the house at a run, but he doesn’t always stop to make sure he has on his shoes or … um … pants. Similarly, on a few occasions while swimming, he decided that his swim trunks were uncomfortable and simply took them off and tossed them aside, much to the dismay of the kids swimming near by. If he’s recently been to an arcade, where there has inevitably been a shooting game, for days afterward, he will eagerly announce to perfect strangers, “I shoot a gun!” Most of the time he just wants to talk to people and engage anyone and everyone, and it is endearing but also exhausting for those of us tasked with helping him navigate social cues. He has no filter and no sense of social norms, which can be his greatest gift and asset, yet those of us who have to act as his filter sometimes have a tough time deciding where to draw the line… when has his boisterousness crossed over from endearing and disarming to annoying and literally in your face? It’s like having a perm-a-toddler who requires constant vigilance and makes adult conversation a rare and special treat.
Ethan’s been battling the villain of epilepsy since he was an infant. When he was 2 months old, he started having these little cringes or sudden jerks, almost like a stomach crunch. Looking back, my Mommy gut was telling me that something wasn’t right about these movements, but they didn’t seem to bother him much, and I prided myself in being a super-chill Mom. It never occurred to us that they were seizures. We had no idea that there are dozens of types of seizures. When Ethan was 5 months old, he was diagnosed with a very rare type of epilepsy, called Infantile Spasms. A quick internet search lead us to discover that the tag line for this “catastrophic” type of epilepsy is “little seizures, big consequences.” The seizures themselves are subtle but the related brain wave pattern, called hypsarrythmia, is damaging to the brain at a critical time of development, and about 70-90% of the babies diagnosed with IS experience moderate to severe developmental delay and impairment.
Since his diagnosis 9 years ago, Ethan has endured dozens of EEGs (which involve having 26 electrodes cemented to his head so that they can record and monitor his brain waves for 1 hour, 24 hours, or even a few days), a lumbar puncture, 3 MRIs, 2 PET scans, genetic testing, and countless blood draws, therapy sessions, and doctor visits (in four different cities). He’s been on nearly 20 different medications, and for 6 months, he was on a very strict Ketogenic Diet, during which every bite he took was carefully calculated and weighed so that exactly 80% of the calories he consumed came from fat.
However, the beauty of Ethan’s battle with epilepsy is that he doesn’t really know any different. He doesn’t think of it as a battle. It’s just his reality.
During the periods of time when Ethan was having more frequent and intense seizures, it became clear that they were bothering him, and he would tell us that his head hurt. They would sometimes cause him to fall and get some pretty serious bumps and bruises and a few stitches along the way. And then life would go on, and he’d be back to his cheerful, seemingly unaffected state. His superhero attitude helps us also to accept our reality and choose our attitude about the challenges we face.
Ethan is certainly not alone in his battle. As I’ve mentioned, he has an army of superheroes who have battled alongside him and us: friends and family, perfect strangers, doctors, therapists, teachers and aides. The examples of superheroes that have inspired us in Ethan’s lifetime are countless, but a few are worth mentioning just to give you the idea.
When Ethan was first hospitalized as a baby, we were flooded with messages of support and thoughtful gifts. Our church set up 6 weeks worth of dinners to be delivered to our house, each one prepared with love by a different church member. Then when his seizures came back just before his brother was born, another group of superheroes from our church got us a freezer filled with dozens of frozen meals.
Because of the persistence of a few superheroes, Ethan was granted a wish through Make-a-Wish, which was a life-altering experience that powerfully affected the spirit of our family and will forever be a force that reminds us of the good in the world and keeps us in the fight.
Some of our superheroes are family members of children fighting similar battles of epilepsy as well as developmental challenges. I cannot describe the relief and comfort of connecting with other parents who “get it” when you have been thrust into a set of challenges you didn’t expect. We have met the most remarkable people because of Ethan, people with whom we have this immediate, indescribable connection. The Arc and LEADS have been a big part of helping us connect with other families. When we participate in activities with Arc and LEADS, we can relax and just be ourselves. We feel so much less stress from constantly helping Ethan monitor social cues… everyone at those gatherings gets it, appreciates us as we are, and goes out of their way to help when a new challenge arises.
That’s not to say that we haven’t made friends outside of the special needs community who make us feel at ease exactly the way we are. Heroes, every one of them. Ethan’s teachers, aides and therapists care for him day in and day out at school with a heroic amount of patience and care, and the growth we see is remarkable.
When Ethan tried out cross country through school, we met countless superheroes of all ages and species (including dogs) who patiently encouraged him to accomplish more than I imagined. I will NEVER forget the first time I watched him finish a 1 mile race and the overwhelming emotions I felt as kids and adults from both teams cheered him all the way to the finish line, despite the fact that he finished last and had taken twice as long as most of the kids to finish the race.
There are countless superheroes who volunteer for the programs that Ethan loves: Special Vibe dance, Gliding Stars adapted skating, Challenger baseball, Shining Stars Special Needs Talent Show, church choir, Hope on Horseback therapeutic horse-riding lessons, and more! It’s humbling to see that every activity Ethan participates in, requires a lot of volunteers, a lot of people sacrificing precious time to help Ethan and his friends to be able to have these experiences. I know that volunteering is always a give and take, and some of these folks are getting just as much as they’re giving, but I won’t ever take for granted the sacrifices they’re making and what it means to Ethan and those of us who love him.
Speaking of those who love him, the biggest superheroes of Ethan’s life-long battle are those who love him the most. I could write paragraphs about the closest members of Team Ethan, about how much his grandparents and aunts and uncles and other family members have done for him and for us, but I hope a few words will do the trick: we could not do it without them. My Mom has come to nearly every doctor’s appointment and hospital stay with me. She’s my rock and my sounding board as I navigate all the information and tough decisions about Ethan’s care. Andy’s parents have helped keep things normal for our other two kids during many of those appointments. They too have been an incredible support to us emotionally and financially. All four grandparents and all our siblings repeatedly show up to help, support, and cheer on our kids time and time again. We are beyond grateful. They are our biggest superheroes.
And I would be remiss if I didn’t mention that our other two kids have their own supernatural abilities, which stem from their own hearts but are also shaped by having Ethan as their brother.
In typical oldest-sibling fashion, Katie is incredibly nurturing and caring. She has been a superhero to her classmates who have special needs because she understands how to relate to them and include them in class. She is also a superhero to many younger kids of all abilities because she treats them with such kindness and love. One of her favorite activities is being a demonstrator at her dance studio, and many of the little dancers flock to her. Parents have sought me out to tell me how sweet Katie is to their daughter. And she is a powerful advocate for her brother. For three years in a row, she has done an informative presentation to her classmates on Purple Day for Epilepsy Awareness. And when there is a fundraiser or opportunity to spread awareness about The Arc or The Epilepsy Project, she shines brighter than I. If you ask her what she wants to be when she grows up, she either wants to be a dancer or a neurologist. (She was relieved to learn recently that she could be a neurologist and help kids like Ethan without having to be a brain surgeon because the idea of brain surgery grosses her out.) No matter what, I know she will break down walls like her brother and spread kindness and love to all people.
Colin has the incredible challenge and honor of being very close in age to Ethan (only about a year younger). As a toddler Colin would sit down with Ethan and mimic the therapists in helping Ethan to do a puzzle or play with a toy. Having recently learned how to talk and do puzzles himself, I would hear Colin ask, “Where’s the circle Ethan?” And then he would use hand-over-hand to help Ethan find the circle and place it in the right place and praise him for it. This past fall, after giving it their all in cross country races, Colin and his friends would jog back and run along side Ethan, encouraging him all the way to the finish line. Occasionally throughout the year, Colin’s teacher sent me pictures of him and his buddies playing games and organizing races with Ethan and his classmates from the Autistic Support classroom during recess. Colin missed a birthday party because he wanted to be Ethan’s helper at a Challenger baseball game.
Colin and Katie are Ethan’s biggest fans when he is playing baseball or performing a dance or skating routine, and then Ethan is the most exuberant fan when it is their turn to compete or perform. In addition, when Ethan is resisting some task, such as brushing his teeth (ALWAYS a struggles and sometimes more than others), they will frequently come help without being asked, trying to distract Ethan or make him smile or laugh until the task is complete. Katie even made a mini toothbrush so that she could model brushing the teeth of Ethan’s favorite stuffed animal while he was getting his own teeth brushed.
Parenting is wonderfully rewarding and challenging and humbling no matter what, and every family has their own set of unique challenges. If I’m asked to describe what makes parenting Ethan different or special, the words I say are the same words that could be used to describe parenting every child: rewarding and challenging, highs and lows, needs consistency and routine, tests boundaries, best and hardest thing ever. It is really just a matter of degree. Our highs with Ethan are really high and our lows are really low. He can bring out the best and the worst in people. All three of our children can drive us crazy and test the limits of our patience at times. Ethan does it more intensely and more frequently than our other two. One of our lowest of lows occurred within the last year, when Ethan’s school van driver was charged with harassment for slapping him in the face. Most of the time he brings out the best in those around him.
Most of the time I feel this overwhelming sense of gratitude because I get to have this superhero of uninhibited joy with me nearly everywhere I go, and I get to witness his amazing powers every day. The tears well up in my eyes as I type these words. All three of our children are our greatest gifts in this world, and Ethan’s supernatural ability to connect with others and break down barriers between people is truly a blessing to witness.
Meet Stacey Randall and her son, Liam. Stacey told us that her family sat down together to write this blog post on Liam. They wanted to share the lighthearted side of Liam and all his hidden superpowers that many people would probably not know about. Thank you, Stacey, for sharing Liam’s and your family’s story with us!
Liam: Captain Tolerance
So, when you look up the meaning of hero in the dictionary it says someone one who is admired or idealized for courage, outstanding achievements or noble qualities. When I think of Liam, hero isn’t the first word I think of. For those who know Liam you think of stubborn, strong willed, happy, and he has a ferocious appetite.
So as a family we sat and discussed what a hero is and why we think Liam is a hero. In all honesty, Liam isn’t a hero at all; he is a Superhero.
A Superhero is someone who overcomes great odds and we agreed that is Liam.
So, his brothers said that he is their superhero because he doesn’t give up, his daddy said because Liam has endured so much and for me, he is a superhero for overcoming all the obstacles thrown at him.
We are blessed to have Liam in our little family of boys and through the chaos, loudness, excitement and love we are one. The 5 of us travel as a team and Liam is the team leader. We know that if he can tolerate it and do it, then we all can too.
He has shown us daily that no matter what happens in life you just need to smile and keep going. With life comes obstacles. Liam has shown us how to reinvent ways to overcome them and face them with strength.
He has over come 32 surgeries in 8 years, 2 of which were brain surgeries, countless hours of therapies, 1,000’s of seizures and months of hospital stays. Never once did he quit. Instead, he would dig deep and keep going even when the rest of us were wary, tired and hopeless. Liam persevered.
So, I guess he is a Superhero, and as any good Superhero he would need a superpower, right? The five of us sat down and considered what Liam’s superpower would be. Landon, his little brother said power hitting. Logan, his older brother said blocking out people who are annoying him. Daddy said staying awake all night (we all agreed on that one). I said being able to puke at the most inconvenient times. However, in all seriousness we agreed that Liam has taught us so much and teaches others too. With that said, we concluded that Liam’s superpower would be Tolerance. Teaching people that acceptance of others through his big blue eyes, amazing giggles, and absolute adorableness.
In 8 years, Liam has met thousands of people young and old, rich and poor, near and far, many say the same thing – he is a blessing. They thank us for introducing us to him and I feel many of the people who have met him feel for a moment the happiness he exudes.
To teach others tolerance is not something that is easy for us to do. He has been met with looks, comments, and harshness, but he doesn’t not see that, nor does he understand it. Instead he is teaching us to accept them for their misgivings and embrace the opportunity to show empathy for their closed-minded views.
He gives us opportunities to show others that he can do everything they can do, just differently. Liam talks with an eye gaze device, he moves with a wheelchair, he eats with a spoon. and he plays just like other children. When you speak to him, he understands and listens. Liam enjoys movies and being outside. He also does naughty things and gets scolded for kicking his brothers, knocking toys over, and having temper tantrums when told no.
So, what I’m saying is that superheroes have faults, and many have crippling disabilities, but they learn to move forward and rise above these difficulties. I’m not saying Liam is the next spider-man, but he too overcomes great hardships to wear the title of a superhero.
July 2018 – Meet Holly Mathe and her son, Max. Holly shares how her son Max is a superhero. Thank you for being a part of The Arc’s superhero blog, Holly, and for sharing your story with us.
Let me be clear, I never wanted to be the Mom of a superhero. No, when I was pregnant with my first child, a boy we found out, I imagined a perfectly ordinary little boy. One with blue eyes and blonde hair with his Dad’s calm nature and my belly laugh. I imagined an ordinary life for him with ordinary friends and teachers helping him become an adult where he would either choose medicine like me or perhaps he would decide being an engineer like his Dad would be a better fit. He would be happy and successful but no superhero cape in sight.
Then came that fateful day in September when we were told our ordinary boy we had been dreaming about would not be ordinary after all. He would be born different. We were terrified. We grieved for that boy we had created in our minds. We fretted over whether or not we were strong enough to raise this child who would not be ordinary. Questions like “Will he go to a regular school?” “Will he have friends?” “Will he walk and talk and read?” swirled in our heads and made it difficult to fall asleep. Our superhero was born in January. We were so scared of being new parents and new parents to a superhero nonetheless it took us a little while to recognize him for the superhero he is. As a newborn he endured a couple major medical issues including a major surgery but despite that exceeded the expectations of all medical staff and was discharged in record time. Once home he slowly worked his superhero power on our everyday lives.
He forced us to re-examine how we had been living. We decided to jump off the rat race track. You know the one, where you work long hours and climb the ladder so you can buy a bigger house, a nicer car, and have a collection of designer bags but you are stressed and hardly ever see your family and thus you spend your days unhappy even though by American standards you are “living the dream.” So, we learned to place value on spending time together and enjoying the everyday moments rather than valuing things. He exuded a wonder at the world that was darling to see and through him we learned to once again enjoy and appreciate the small things such as the bloom of a flower or splashing in puddles. Even though he is a superhero he has to work hard to do things that come rather easily to ordinary children. Thus we learned patience and the value of perseverance among other things.
You may not know this but when you have a superhero in your life they attract other superheroes. Because of our son we have known so many superheroes in the form of therapists, teachers, teacher aides, and people involved in non-profit organizations like The Arc of Erie. Family members became extraordinary swooping in and taking care of our superhero (it’s tough work this parenting gig) when my husband and I needed to recharge. Many of these people have become part of our tribe and are integral parts of our daily lives and for this we are thankful. We have also had to learn how to stand up for ourselves and how to fight for our superhero. Some people are scared of those who are not ordinary and view them as less than because they do not fit the ordinary mold they are use to. We are learning how to educate these people and try to cultivate a form of acceptance and understanding.
I’ll be honest it’s not easy work and not for the faint of heart. There are nights we fall into bed battered, bruised, and feeling defeated wondering if the world will ever see our superhero for the wonderful being he is and respect him in his own right. We wonder if our weary bodies can get up and do it again the next day.
And we do because when we wake up our superhero is there smiling at us, telling us he loves us, and is eager to see what wonderful things will unfold this new day. So let me be clear, I never wanted to be the Mom of a superhero but I am so grateful I became one
June 2018 – Meet Sheryl Brown and her daughter, Lauren. Sheryl and her husband Brian are our 2018 Arc of Erie Host Family and we are so excited to share with you Sheryl’s story in our June blog. Thank you, Sheryl for sharing your story with us.
She is healthy, brave, funny, sassy, beautiful, smart, loving and fiercely independent. It’s not easy to live in the shadow of our superhero…but somehow, we manage!”
My husband and I met later in life and we were anxious to start our family. After a couple miscarriages, we found out we were pregnant and we were so happy. However, our dreams took a sharp turn when we learned our baby would be born with Down syndrome and in addition to that, she had a heart defect that would most likely need repaired in her first year. Somehow, we thought that meant the healthy baby we wished for was now going to suffer with a genetic condition that has no cure. We thought we would suffer as well. Little did we know that what we thought was devastating news, would turn out to be our greatest gift.
I knew a little bit about Down syndrome, but never thought about the life changing implications it would have on a family. What would our life be like? What is her life going to be like? Not just from a medical and developmental stand point, but would she have friends, get married, go to college? Would she get bullied at school? Would our family and friends accept her? Would she be a difficult child to raise? It took a couple months to get over the initial shock of her diagnosis. We decided that if our child was going to have Down syndrome, then we are going to make sure she has the best life possible and we will help her to explore all the good things life has to offer.
Lauren was born in June of 2013. She spent 2 weeks in NICU and was finally able to come home. She did have open heart surgery at 5 months. Her tiny little body hooked up to all kinds of wires with a huge incision down her chest just broke this mamma’s heart. While at the hospital we met other families whose children had just had surgery too. Some were doing well, others were not. Lauren came home after just 7 days in the hospital. It wasn’t until we got home that we experienced a kind of survivors guilt. Our daughter was home and doing well while some of the families we met were still in the hospital with their child. In this lesson, Lauren taught us life is fragile. Treat it with respect and be helpful to others even if all you can offer is a smile.
I think Lauren’s super hero powers are sharing her zest for life and putting a smile on everyone’s face. She definitely lives out loud! I’ve seen her turn a grumpy old man into a smiling gentleman with the wave of her little hand and the warmth and sincerity of her smile. If we are out shopping, its like being with the prom queen, whose job it is to wave and greet everyone with a “Hi” and prompting them for a fist bump or high five. If a child is crying she wants to comfort them, if you cough she will ask if you are ok and hand you a Kleenex. She waves hello to everyone we pass and when we leave she says goodbye to random strangers walking by. She leaves them all with a smile.
She loves to dance. She dances like no one is watching and encourages us to dance as well. “Up, up” she says and waits for us to stand and join her. When the music ends she says “Ta da” and then asks for you to clap. Every morning she wakes up with a smile and greets me with “Oh, hi Mommy” and when her feet hit the floor she’s off and running to say good morning to the dog.
Every day is an adventure and every day is filled with love.
She is healthy, brave, funny, sassy, beautiful, smart, loving and fiercely independent. It’s not easy to live in the shadow of our superhero…but somehow, we manage!”
May 2018 – Meet Brianne Vogan and her son Noah. Brianne is our first guest blogger for the 2018 year. We will be featuring two other parents sharing their superhero stories leading up to our 2018 Step Up Erie run on August 18th!
Noah is my superhero, my world, my love.
He will always be my heart; I will always be his voice.
Throughout a total of six years of trying to get pregnant, three miscarriages, and being told I would never be able to naturally conceive, Noah became my miracle baby. Noah was born into our lives in March of 2011. Noah was born with Down syndrome and a few years later also diagnosed with Autism. He is my excitement and my joy every day. I often wonder how I got so lucky to be his parent. My prayers for a baby were answered ten-fold.
I often feel pride walking into any public place with Noah. While eating out at restaurants, I wonder how many people see how well behaved and loving my child with special needs is and if it fills their hearts with joy like it does mine. It seems to be a common occurrence to have someone come up to me to say something to me about Noah. Either they have a child or family member with Down syndrome, or how only special parents get special children. Most times the conversation ends with me telling the person how lucky I am to have him.
Noah touches lives that I don’t even know about and some I do hear about. I hear stories of kids at daycare who ask their parents at home if Noah can come over and how much they like him. I hear stories of caregivers who may have never heard Noah talk because he is non-verbal, but hear him belly laugh at something, and that brightens the rest of their day. Noah can melt away anyone’s bad day. In that moment, he is their superhero.
I know Noah’s bus driver loves Noah. I hear how if she is out sick, other drivers fight over who gets to drive him to school that day. He is their superhero. They feel privileged to take care of him. And what a relief that is for a mom of a non-verbal son to hear.
Noah’s teacher at the Barber National Institute is one of my superheroes. She loves and takes care of Noah. She pushes his limits to develop him to his greatest abilities. Since he started at BNI, his development has skyrocketed. His communication is being fine-tuned and his world has opened. I am forever grateful for such an amazing school and the people that work there.
Noah is my superhero. Noah lives in his own world. He does not care what others think of him. Noah laughs at whatever makes him happy. Noah does whatever makes him happy. Noah loves to impress people and show off his abilities, to family, friends, and even strangers. I wish I could live my life like Noah; in pure happiness and free from peer pressure.
Noah is my superhero. Noah learns new concepts quickly, even if they are a struggle. He doesn’t yet fully understand potty training, for example, but he tries. And if he hits a milestone, we praise him like he won the lottery. Noah fully understands when he is praised and then tries even harder to commit to the new concept. Noah does not understand failure. I wish I could live my life like Noah; free of the fear of failure and defeat.
Noah is my superhero. Noah loves to his greatest ability. Noah knows no stereotype or judgement. Noah will hug anyone with arms wide open. Noah gives the best kisses with his tongue hanging out. My favorite time of day is when I can snuggle with Noah and he puts his arm around my neck. I wish I could live my life like Noah; full of love for everyone without judgement or criticism.
Noah is my superhero, my world, my love. Noah has taught me more than any school could. Noah teaches me patience, resilience, acceptance, and love. He teaches me to push through the hard times, laugh at the silly times, and rest in the peaceful times. I will always advocate for him and seek out the best care for him. I feel privileged that I was chosen to take care of such a sweet, loving young man who has so much to offer. He will always be my heart; I will always be his voice.
Thank you, Brianne for sharing your story!
“Welcome to Holland”
“We had planned a trip to Italy but landed in Holland but it is okay Holland has lovely things. It`s just not as flashy as Italy, it has windmills and tulips. We have learned that Holland is a beautiful place full of many superheros.
Our next blogger is Kim Serafin, mother to Mathew Serafin. The Serafin’s were The Arc’s host family in 2016. In Kim’s blog she tells a heartwarming story about her son’s journey thus far. Kim describes how Mathew is a superhero in his own right, as well as the many people who have been superheroes for Mathew. Thank you Kim for taking time to share your family’s story.
“The name Mathew means Gift from God and he truly is a gift.”
November 7, 2000 our superhero was born. At the time we did not know how much of a superhero he would be. He was born appearing very healthy with no complications. Mathew was quite a fussy baby and we noticed around 3 to 4 months he wasn’t gaining head control or grabbing for items. He was then diagnosed with a developmental brain abnormality and was given the diagnosis of spastic quadriplegic cerebral palsy. We were then welcomed into a whole new world which was very scary at the time. We were very fearful of the unknown. After Mathew had some treatment for reflux and became more comfortable he was a very happy baby. He has the most beautiful smile that will light up a room. He had to work very hard to achieve even simple motor movements such as waving or clapping and picking up items. I can remember when he first learned to wave and clap how excited we were.
Mathew taught us to slow down and enjoy the simple moments in life. He taught us not to take anything for granted. Mathew`s determination and motivation is so strong. He never gives up.
We met many doctors and therapist along the way who were also superheroes. They gave us support, hope and knowledge to help Mathew meet his fullest potential.
We had hopes that he would be able to talk, sit up, and maybe walk. He tried very hard but was not able to meet those milestones. We then realized we just wanted him to be happy and healthy and we would help him to reach his maximum potential. At 3 years old he started preschool at the Barber National Institute. I can remember when we first met his new teacher and she introduced herself to Mathew, called him by name and shook his hand. She treated him as Mathew a 3 year old boy starting preschool. She became our superhero.
She had high expectations for him. She saw him first and not his disability.
He was pushed in a gentle way to become the best he could be. While at the Barber National Institute he learned to drive a power chair and to use a communication device learning to become as independent as he could. He showed us that he had a strong drive to be successful and fought for every accomplishment like a superhero would. He would surprise us every day with new things he was able to do and increased intellectual understanding. He has a good sense of humor and truly loves people. Mathew had to endure some very tough orthopedic surgeries and deal with pain that I could not even imagine but always came through very quickly with a smile and ready to work again. He did not let anything stop him. He learned very quickly to adapt and overcome.
Mathew`s big brother Nathan is also a superhero to him. Nathan has always remained by his side and has never thought of him as different. Mathew has been Nathans number one supporter in all his sporting events. Nathan accompanied Mathew to many visits to Pittsburgh Children`s Hospital and has been there through all his surgeries. Mathew truly loves his family and is very happy when everyone is together. They have never had sibling fighting. They have a very special bond.
Nathan sees Mathew as his superhero as well, helping him to grow into the man he is today. Teaching him to slow down and enjoy the little things. He has taught Nathan to be accepting of other people`s differences and see their abilities and not disabilities.
Mathew was ready to spread his wings and fly out of the Barber National Institute to the public school system in the middle of first grade. The public school was a little hesitant but he quickly showed them he could do it with the right supports in place. He then needed a home health care nurse to accompany him to school. This was put in place due to a medical setback he had. He now had to be completely G-tube dependent but do you think he let that stop him. No he did not. He adjusted very well probably easier than we did. We then received a gift of his nurse Randie. She is our superhero. She has become a member of our family. She treats him as if he were her own. This has allowed us to work without worrying about Mathew. Mathew was then introduced to new teachers and therapist.
Mathew is now 16 and successfully went from elementary school to middle school and is now in his first year of high school. We attribute his success thus far to all the many organizations and people that have helped along the way. Mathew, our superhero, has introduced us to a whole new world we would of never known if it weren’t for him. The name Mathew means Gift from God and he truly is a gift. As stated in the poem “Welcome to Holland” by Emily Perl Kingsley we had planned a trip to Italy but landed in Holland but it is okay Holland has lovely things. It`s just not as flashy as Italy, it has windmills and tulips. We have learned that Holland is a beautiful place full of many superheroes. Mathew always sees the good in people and truly enjoys life to the fullest. It is hard to have a bad day when you look at him and his smile. He loves to be very active and involved. His true love is sports. He plays baseball soccer and wheelchair basketball. He ice skates in the winter and sails in the summer. If there is a way to do something he will do it. He doesn’t let anything stop him. He has recently taken a liking to the superhero Ironman. Mathew wears AFO`s and has to wear a hip brace at night so he can relate to Ironman. The ARC has been a big support for him in the last year providing him with more leisure activities and meeting new friends. We would definitely encourage others to seek the ARC for support and to meet many superheroes.
“Believe in yourself, and all that you are. Know that there is something inside you that is greater than any obstacle.” ~Christian D. Larson
Meet The Scavella Family
2017 Arc Family of the Year
The Scavella’s are our 2017 Arc Family of the Year! To help get to know our new family, we asked them to tell us how their daughter, Lina, is a superhero as well as who has been a superhero for their child. As we all know, superheroes don’t always wear capes, and they come in all shapes and sizes! Our children who have been touched by a developmental disability are often the strongest and most amazing people you will ever meet and show us every day just how “super” they are! Read their story below, contributed by our very first guest blogger, Emily Scavella.
On Tuesday May 10th 2016 a superhero was born. Our family was graced with the arrival of a chubby cheeked, dark haired, bright eyed, beautiful baby girl, who after a day of serious debate, was given the name Lina Grace. The morning after she was born we were informed Lina was healthy and that she had Down Syndrome. At this moment we knew this feisty, cuddly little girl would change our lives in ways we never imagined. At first there were a whirlwind of emotions ranging from fear and anxiety about Lina’s future and our future as a family, a little bit of disbelief but mostly an extreme sense of love. In the short 10 months that Lina has been on Earth, she has taught our family what the true essence of life is about.
The first lesson our superhero taught us was the power of acceptance.
The first lesson our superhero taught us as we lay cuddling her in the hospital room was the power of acceptance. Accepting every situation and every person regardless of their differences. Whether someone has blonde hair or brown hair, likes sports or prefers music, has freckles or an extra chromosome, these differences are what makes each individual unique. This uniqueness is what makes each person truly beautiful. It is important however to remember that as humans we are more alike than different no matter our genetic make up or our beliefs or disbeliefs. We all desire to love and be loved. Lina will always be accepting of everyone without judgement and with unconditional love. This is a strength that only a true superhero can possess.
Like a true superhero, Lina has powerful determination to achieve things that don’t always come easy. Due to her low muscle tone it is more difficult for her to achieve developmental milestones. It may take her longer to sit, crawl or walk but she will achieve these goals with hard work and determination which makes the victory that much sweeter. Lina has taught us to stay focused on our own dreams and goals no matter the challenges that may be presented along the way. She has taught us to celebrate achievements no matter how big or how small and to always show gratitude to those who help us along the way.
The life of a superhero isn’t always easy. Sometimes the fight is hard and reinforcements are needed. Many other superheros have been brought into our life thanks to Lina. She has many doctors all who help keep our baby healthy. Lina also has very educated and compassionate therapists that have granted us the ability to assist her in achieving her goals. All of her therapists have creative methods to help keep Lina motivated and focused which isn’t always an easy task. We will forever be grateful to her therapy team and hope to remain friends long after her goals are met.
Most superheros are known for their speed, but Lina has positively impacted our lives in a different way. She has taught us to slow down and appreciate every day God gives us.
The Arc of Erie has been on inspiration in helping us advocate for Lina and others who may have special needs. The Arc helps Lina and other children and adults who may have special needs reach their fullest potential and become contributing members to society. It is comforting to know The Arc is there for us when our adventures in life require additional support (they often do). Through the Arc we have forged numerous relationships and met other families who have superheroes in their lives. We have found the other families to be very informative and encouraging and cant imagine our life without them.
Most superheros are known for their speed, but Lina has positively impacted our lives in a different way. She has taught us to slow down and appreciate every day God gives us. We have learned to live in the present rather than constantly be rushing to the future. She has taught us to enjoy the snuggles, the giggles and the beauty that the present has to offer. We have been blessed to know this is what life is all about. God made Lina with great purpose in his own image and likeness.
As parents, our purpose in life has shifted in a much greater direction since the birth of our two children. We believe our purpose in life is to help our children grow in a world that accepts people for all of their abilities and to help people reach their dreams. We are blessed to know that every person Lina meets including big sister, Tessa, will be infected with pure unconditional love. Lina has the power to brighten the room and bring a smile to a strangers face with her warm giggle and super-friendly smile. She will even try and kiss your entire face and suck your cheeks if you let her. In our eyes, the world is now a brighter place because of her.
Our superhero was perfectly and wonderfully made and there is no doubt in our mind that she will be a superhero to many other people throughout her lifetime and that she bring many other superheros into our life as well. We are so blessed! Our hearts are full.
“Every good and perfect gift is from God.” -James 1:17