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 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
Don’t delay! The Arc’s Step Up Erie Race is August 18th! Register now at https://runsignup.com/Race/PA/Erie/StepUpErie. Last day to guarantee a t-shirt is July 20th!
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
Check back often for more info on our 1st Annual Step Up Erie Race.