Tag Archive for: family

Suddenly Schooling from Home for a Family With Autism

Q and A with Michele Gay

I overheard a conversation the other day in the grocery store (from a distance of course) where one well-intended shopper said to another “We’re all in the same boat.” The other shopper replied, “I don’t think so. Maybe the same sea, but way different boats.”

One of our favorite team members, Susan Parziale, has been especially on my mind this month. It’s April and this month is special to both of our families because it’s Autism Awareness Month, time to celebrate our children and families, and so many inspiring individuals with Autism. Having daughters with Autism is what brought us together years ago.

Sue and I sat down recently to check in and talk about the unique challenges in her “boat.”

From left to right: Jonathan, Jenna, and Susan.

MG: What’s going on in your world right now?

SP: Well, “my world” is now “my house!” Here in Massachusetts, we have been in full “stay home” since the beginning of March. Our daughter attends a full day, year-round school to meet her needs. Under normal circumstances, any interruption to school is a challenge for us, so as you know, this long-term shutdown has hit us especially hard. Like most children and adults with Autism, our daughter thrives on daily structure and consistency. Services after school for life skills, swimming and outings in the community are also essential to her progress and stability. Of course, none of those things are happening now and her daily routines have been upended. We are seeing difficult behaviors–that we had conquered in the past–rear up again. Normally, school and support staff would do a home visit to assist, but obviously that’s just not possible now.

MG: So what kind of support can you get from school right now? What does schooling from home look like for you and your family?

SP: We start each morning with a parent/teacher consult via Zoom to discuss a daily program. Because my daughter is a teen, we are focusing on life skills (e.g., laundry, trash, making the bed, preparing small meals, etc.). There is sure a lot of time to reinforce those skills at home right now! A few times a week have a 1:1 Zoom call with one of her teachers to work on a task with her iPad program L.A.M.P. (Language Acquisition through Motor Planning). We are lucky to be able to do at least some programming this way. I am grateful that the activities are still set by the school staff, but obviously I have to work on all of the programming with my daughter throughout the day. This means taking turns with my husband to do our own work–often at odd hours!

MG: What’s been an unexpected benefit?

SP: I am an organized person by nature so staying on task and focused has come in handy with keeping a daily schedule for all of us. The family walks have been a nice benefit too. Like most families, we only had time on the weekends for walks and weather was always a factor since we live in the Northeast. Before COVID-19, we would have never gone for a walk in cold
weather, now we do not bat an eye because it is an essential part of our day—and our sanity!

MG: What’s been the hardest?

SP: The hardest part is the Autism meltdowns. We have created a safe calm-down space where our daughter is free to go for breaks, but I feel so helpless in soothing her through these. We just have to ride it out, but it is incredibly stressful as a parent. She also has been exhibiting perseverating behaviors [repeatedly asking] for certain places and people. It is very difficult for her to understand that we can’t go to these places and see these people that are normally part of her life.

MG: How have you had to adjust expectations for yourself and your family to make this work?

SP: We get up at the same time each day; start home school and then take our afternoon walk. It’s a little like Groundhog day for us! But we know that it’s just what we need to do for our daughter. We give her a daily printed schedule each morning to show her the plan. We try our best to keep to this schedule but have learned that we have to roll with the unexpected. I’ve also learned to give her breaks whenever she asks. It’s a give and take.

MG: How are you taking care of yourself so that you can be the best version of yourself for your family?

SP: To deal with stress, I exercise each day with online classes by my local gym, I have Zoom meetings with other parents of children with Autism and we discuss our challenges and give suggestions to each other. I also call my family each day to check on how they are doing. And my husband and I are watching a lot of comedies!

MG: I know you are still working out! I can tell—even on Zoom. I’m so glad you are finding ways to stay connected with other parents too. The support of your “Autism tribe” can be literally lifesaving. It makes such a difference. You’re one of the most positive, forward-thinking people I know. Before I let you go, will you share what gives you hope for the future?

SP: Now that we are 30+ days in with our focus on life skills and home schooling, I find I’m more confident that I can handle teaching my daughter all sorts of skills that she will need when entering adulthood. I guess I am more capable than I thought. For lots of parents supporting a child with Autism, the transition to adulthood is daunting to say the least. Somehow, I feel a little more ready to face the challenge…An unexpected silver lining in all of this.

Susan Parziale, Administrative coordinator for Safe and Sound Schools, NAPO professional organizer, owner Organizing Offices and Homes
Michele Gay, Co-founder of Safe and Sound Schools
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Love Note to Josephine Gay on her 12th Birthday

12.11.17

Joey,

Happy 12th birthday, my little love.  I celebrate you today—and every day–here on Earth, knowing that you are alive in heaven.

I imagine you playing with so many of your friends and favorite teachers, eating cupcakes and pizza, and living a life more full than I can imagine.

I miss your kisses and snuggles, your hysterical belly laughter, and how you pestered your big sisters–and your daddy–without mercy.

I miss you. So much.

Life is not easy without you here…but as I promised you once, I won’t give up.

I will love openly, share generously, speak boldly, and walk bravely—toward a better, safer, and more compassionate world.

Do not worry. I am not alone. Many good people walk with me.

I keep all of your gifts close to my heart. I use them to heal our family and in service to others. Your gifts continue to prosper, making schools safer, providing for families with autism, and reminding others of God’s presence in their lives.

You continue to make your mark on this world—and the next. I am sure.

I still hear your sweet voice and feel your warm presence. I know that you are with me in all that I do.

My love for you is like yours for me. Always.

Love,
“Mama”

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Why We Send Our “Thoughts and Prayers”

As another community reels from tragedy, terror, and grief, many of us are at a loss of our own: What should we say? What do we do? How can we help?

We too are in shock. We grieve for these families and this community. We want them to know that we care. That what they are suffering is unacceptable to us.

So, many of us send thoughts and prayers–some of us quietly, in front of the news unfolding on TV, as we wake or climb into bed, in our homes or houses of worship. Others take to the airwaves, social media, and vigils to send support in the form of thoughts and prayers.

Is this wrong? Is it presumptuous? Is it “not enough?”

The truth is, it’s not for us to decide. Ours is to offer and wait.

There’s a reason our nation has taken to the time-honored tradition of offering thoughts and prayers in times of suffering and loss.  We are a nation of many beliefs and different faiths, but we are all American. We care deeply.

What’s more, the offer of thoughts and prayers is a simple one, a quiet gift that requires absolutely nothing of the recipient. A gesture that says we see you. We care about you. We send our love and support from near and far, in the only way we know how.

Today some people argue that thoughts and prayers are not enough. That now is a time for action. In the weeks and months following the tragedy in my community this was the case for some. For our families, it was not.

We are all different.

Perhaps for some in the community of Aztec, New Mexico, rising up and making change at once will be the way. For others, giving back or finding faith will help. Some will choose a quiet retreat, some will focus on family, and others will return to work right away. People will choose a path of their own. Few will carry on in the same way or in the same time.

For our families “thoughts and prayers” made all the difference.

Our daughters were murdered nearly five years ago, along with 19 of their first grade classmates and 6 of their beloved teachers at Sandy Hook School. The thoughts and prayers of our friends, family, and strangers sustained us like nothing else could.

We took your love in its many forms––your cards and works of art, your poems and songs, your afghans and quilts, gifts, donations, and lovingly baked lasagnas, each making its own kind of difference. Yet it was the steady stream of thought and prayer that buoyed us through the long nights, heart-breaking decisions, and harsh realities that we had no choice but to face.

We felt your love and it made a difference.  

The simple offer of thoughts and prayers meant that we needed only to receive, that we could reserve what energy we had to bear the weight of our loss, knowing that many good people stood beside us, waiting for us to determine the way forward from our deeply personal losses.

When the thought of taking another breath or moving another step was overwhelming, this simple gesture meant the world to us. We were not alone.

We cannot know with any certainty how our thoughts and prayers will be received by these families, or this community, or the next; but one thing is certain: Taking the time to think of and pray for them before taking action may better prepare us to listen and follow their lead, to respect their unique wishes, needs, and individual journeys forward.

Though we may never come to know a soul from Aztec, New Mexico, we know the power and beauty of the thoughts and prayers of others, so we openly choose to send ours. We know for some, they will make all the difference.

To the families, friends, and community of Aztec we send our thoughts and prayers.

May God bless you.

Michele Gay and Alissa Parker, Founders of Safe and Sound Schools 

 

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Remembering Josephine Grace Gay

This post, written by Michele Gay and her family, originally appeared in The Newtown Bee on November 17, 2017. 

December 14, 2017, will mark five years without loved ones for families of children and educators killed at Sandy Hook Elementary School. The Newtown Bee will share remembrances of victims of 12/14 throughout the fall, written by family members or with the assistance of staff at The Newtown Bee. Not all families care to participate, and we respect that. This week, the family of Josephine Gay shares these words.

Joey GayDecember 2017 brings the fifth anniversary of losing our daughter and sister Josephine Grace at Sandy Hook School. The youngest of three daughters and the center of our family’s life, she was born on December 11, 2005, in Columbia, Md.

Just a few months after Josephine’s birth, our family would move from the bustling Baltimore-Washington suburbs to the small Northeastern town of Newtown. After months of house hunting, phone calls, and research, we settled on the quiet little village of Sandy Hook.

Josephine lived most of her life of 7 years and 3 days as a Newtown resident, among some of the finest friends, neighbors, and community members that we could have hoped for. Those closest to our family knew her best as “Joey.”

She was affectionate and friendly, determined and hardworking, mischievous and fun-loving. She was the “girly-est” of our girls. Joey adored her older sisters and worked hard to keep up with and direct them whenever and however possible.

As she grew, we watched her closely, noting great differences between her development and that of her older sisters. Close to her second birthday, she was diagnosed with autism, and later with global apraxia and apraxia of speech. She worked very hard to learn to move her body, communicate, and meet the milestones that had come so easily to her older sisters.

Her indomitable spirit, determination, and desire to connect with others would ensure that her family and friends understood her and looked out for her, going to great lengths to share in and celebrate her accomplishments. Her classmates eagerly learned sign language and encouraged and included her whenever they could. She was blessed with true friendships and loved by many of her peers, neighbors, and teachers.

Yet the gap between her growth and that of her peers would increase as they progressed through preschool and kindergarten. The resources of our small town school system could not fully support her learning and development, so she would spend hours after school and on weekends at occupational, physical, speech, and behavioral therapy, her sisters tagging along and participating wherever they could.

As she approached first grade, our family had to make a difficult decision: continue this challenging routine or search for a community with the resources to more fully support Josephine. We labored over the decision, knowing that life in Newtown had provided a safe, supportive, and compassionate community for Joey and our family. We wondered if we would find another place on earth like this.

We found our new home in nearby Sudbury, Mass., and we began to prepare for our move in January 2013. We looked forward to this new chapter and the new opportunities that awaited our family, and took comfort in the fact that we would never be far from our Newtown friends and neighbors.

Despite our hopes and dreams, plans and preparations, Josephine would never move with us. She was killed in her classroom along with many of her beloved friends and teachers at Sandy Hook School on the morning of December 14, 2012. The loss of Josephine is still unimaginable and as difficult to understand as it is to bear.

Yet our love for her never ends. Our faith that she lives in heaven sustains us. Our friends and family are ever mindful and prayerful for us. Somehow we are moving forward with her.

Carrying on with our move only one month after her death was an overwhelming undertaking. It was difficult to imagine how we would survive without the love and support we felt in our Newtown community. Nevertheless, we made the move with the support of many Newtown friends and neighbors and were received with open arms in Sudbury.

Only a few hours away from our Newtown friends and neighbors and the families of loss that we clung to, we made frequent trips “home” for support, meetings, and difficult decisions. We chose when to come and go and which events we had the energy to attend and support.

Living outside of Newtown, our family was free from many of the difficult pressures and challenges now facing the community. We resolved to build and protect our daughter’s legacy ourselves and in our own time.

We chose to create a legacy for Joey that focused on her extraordinary life, not her tragic death. As her family, we are honored to be the custodians of her voice and her legacy. Although it has been both eye-opening and heartbreaking to witness the efforts of others to use her memory and our tragic loss for their own politics, purposes, and pursuits; many friends, neighbors, and perfect strangers have rallied around and alongside us with unconditional and unwavering support, helping us build and protect a legacy fit for Josephine.

Joey loved school, her friends, and teachers. She lived a wonderful life both gifted and challenged by autism. She thrived in our family of faith. These are the pillars of her legacy, the legacy that we have built with the support of so many generous hearts and hands both in Newtown and nationwide.

We started building Joey’s legacy first with the Doug Flutie, Jr Foundation for Autism. As donations from friends, family, and strangers poured in following her death, we opened Joey’s Fund for families with autism. Joey’s Fund has granted more than $55,000 each year since the tragedy to provide direct support to families with autism. We see the generous spirit and smile of our daughter alive and well in the faces of these exceptional children.

In the spring of 2013, we founded Safe and Sound Schools with the Parker family [whose daughter, Emilie, also was killed during the tragedy] to help school communities build and ensure the safest possible learning environment for children and teachers. Traveling the country advocating, speaking, and teaching with the guidance of national school safety experts, we’ve watched this grassroots effort blossom and grow, helping thousands of school communities striving for safety.

December 14th is always a difficult day for us. This year, like every year since 2012, we will attend early Mass, spend the day together sharing memories, and thanking God for His steady presence in our lives.

We will celebrate Joey’s 12th birthday this year on December 11th, wearing purple in her honor, tying purple balloons on the mailbox (a tradition started by our Newtown friends and neighbors), and accepting donations in her memory for Joey’s Fund for families with autism. To learn more or support Joey’s Fund please visit: http://bit.ly/2AlbSUF.

We continue our work with Safe and Sound Schools, sharing our message of hope, education, and empowerment with school communities across the country. To learn more about Safe and Sound Schools or to support or join our national effort, please visit safeandsoundschools.org.

We are grateful for the many thoughts, prayers, and acts of humble service that have lifted us up and helped us carry on in memory of our precious daughter and sister, Joey. We eagerly wait for the day that we can see and hold her, not only in our hearts and minds, in our arms once again.

With love and gratitude,
Bob, Michele, Sophie and Marie Gay ?

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An Unseen Angel: A Mother’s Story of Faith, Hope, and Healing After Sandy Hook

What inspired you to write and share your story?

The shooting at Sandy Hook Elementary School affected so many people, and I felt like there was this whole other side to the story no one even knows about. Losing my daughter Emilie completely paralyzed me. I felt such a great loss. In my search to find and understand my daughter’s “new life,” if you will, I was able to also find forgiveness and peace. Sharing that journey with the world was not an easy decision, but I felt like it was the right thing to do.

This book is incredibly personal, filled with private, painful, but also very precious memories of you and your family. Throughout the process of writing this book, what did you learn about yourself?

I learned a lot actually.  When I began writing, I had no idea what story I was going to tell through my experiences. I knew that we had had many unique experiences that were important our family and I wanted to record them for my young daughters. But as the story began to unfold on paper and I began to connect the dots, I saw for the first time the whole story. I was stunned.  The picture before me was so beautiful! To see how all the pieces connected together was amazing.  I felt very humbled by the many blessings our family had been given and how far we had come in the years following Emilie’s death.

In the book, we learn from Emilie that “Everything is connected!” This is one of the themes in your book. Can you talk about the connection between forgiveness and healing? What role has forgiveness played in your journey of healing?

In the beginning, forgiveness wasn’t even something I was thinking about.  I wanted to focus on my family and our healing, and the forgiveness part would come later.  But, of course that is not what happened. I found that healing and forgiveness went hand and hand and I couldn’t do one without the other.  

After Sandy Hook, you reveal that you struggled with your identity, the idea of being defined by tragedy. How important has this book been in helping you own your story, in helping you define you and/or your family’s identity?

Emilie was so much more than the tragedy at Sandy Hook.  Her life was full of color and light! I did not want her identity to be defined by someone else’s actions. This story gives people a look at the whole picture of what her life looked like, before and after.

You share many sweet stories of Emilie. It paints a colorful picture of Emilie’s personality. We learn that she was and continues to be a source of inspiration for many. How do you want your daughter to be remembered?

I guess I would want her remembered the way our family remembers her.  As a chatty, colorful, messy, caring, emotionally sensitive little girl that always put others before her.  She was a loving leader and playmate to her sisters, and an example of Christ-like love to my husband and me.  

How did you decide what stories you wanted to share and what stories you wanted to keep private for you and your family?

Oh, there is a whole additional book of stories we didn’t end up using for the book.  Some were by choice and some just didn’t fit the main thesis of the book. This is Emilie’s story and we had to use that as a guide to decided what stories needed to be told.  

For those who haven’t read the book, what are some of the themes readers can look forward to?

I hope people walk away understanding how connected we all are to the ones we love and that those connections are never truly lost. There is a lot of hope in knowing that. In the darkest of times, it can be hard to see the light. I learned through this experience that the light is all around us, we just have to choose to let it in.

What do you hope people will take away from An Unseen Angel ?

There is so much despair and darkness associated with the shooting at Sandy Hook and I hope this story will show people the other side. The side that can inspire us to look at the world in a different way… the way Emilie saw it. It’s a world full of color and hope and above all else, goodness.  

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Alissa Parker is the mother of one of the 20 children who died tragically in the Sandy Hook Elementary School shooting in Newtown, Connecticut, in 2012. After Emilie’s death, Alissa began TheParkerFive blog as a tool to express the emotions she and her family experienced throughout the grieving process. She is also the cofounder of the Emilie Parker Art Connection, a charity helping local community arts programs for children, and Safe and Sound Schools, a touring national advocacy group that helps people take action to make schools safe.

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A Father’s Day Message from Emilie’s Father, Robbie Parker

4-12 Boston Trip (44) Sometimes as a father of school aged children I feel like I spend a lot of my time on the sidelines. Whether that is cheering them on at a sporting event, nervously watching them in a recital, or complimenting them about a school project I didn’t know was due last Friday.

I often wonder: Do my children know how much I care about them? And, what else can I do to be more involved in their lives? And how can I keep them safe when I am not present?

Of course these questions are natural for fathers. We, like our counterparts, are required to sacrifice so much for the overall benefit of our children. As a parent –a father–there is nothing more important than the well-being and safety of our family.

After my oldest daughter, Emilie, was killed at Sandy Hook Elementary school, my wife Alissa and other grieving mothers from Sandy Hook met to support one another. As their relationships grew, so did their focus: ensuring the safety of children in school. The women started Safe and Sound Schools.  I am so impressed with what they have accomplished.

Like many of the other fathers, I supported them–from the sidelines. That was until I realized that this is a game I can join. This is a game I need to join.

Our children spend about the same amount of time at school each week as we parents do at work. As fathers, our responsibility to ensure our children’s safety and well-being goes beyond the walls of our own home.

As I have met with teachers, administrators, safety and security experts, I have found a group of people who genuinely care about my children’s safety as much as I do. Together we have recognized problems and found solutions that have benefited thousands of children.

If you want to know how to be more involved in your child’s life, in their safety, explore the Safe and Sound School site to access free resources. Get involved, your children will benefit from your love and hard work…whether they know it or not.

___________________________________________________________________________________________

Robbie Parker is husband to Alissa and father of Emilie, Madeline and Samantha. Robbie, is a Neonatal Physician’s Assistant, a contributor to Safe and Sound Schools and co-founder of the Emilie Parker Art Connection, founded in honor of Emilie’s love of art.

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Out of the Mouths of Babes…

Recently, one of my daughters asked me why I’ve been traveling.  I rarely left our home during their little sister Joey’s lifetime.  Naturally, this change has taken some getting used to for my family.

Thinking this was where she was coming from, I started explaining that traveling was an important part of my job at Safe and Sound…I travel to talk to people and work with experts and professionals on making schools safer.  I reassured her that our family still comes first.

I was headed down the wrong cul-de-sac, though…

“It can’t be a job, Mommy.  You’re not getting paid any money.”

I just about spat out my coffee.

“Well,” I stalled, “not all jobs pay in money, Sweetheart.  Nobody pays me for doing the laundry, cooking, or grocery shopping, right?  It’s just part of taking care of our family.  The pay off is a happy, healthy, well-fed family.”

I paused to study her face and see how I was doing.  I had her attention…

“Safe and Sound is like a home, a gathering place for members of a bigger family.  People who visit our site, or invite us to their community, or help us learn and teach others, are working for the same pay off:  safer schools.”

“Well, who’s in this family?”

Detecting a little jealousy, I said, “Well, you are, of course! You want schools to be safe, happy places, right?  That’s why you work on safety all the time at school.”

“Well, yeah.  But who else is in this family?”

Fair enough…

“Teachers, Counselors, Principals, Firefighters, Police, Moms, Dads, Students, safety experts–anybody who wants to make schools safer,” I answered.

“Like the Colonel?”

“Huh?  Oh, you mean Col. Grossman?!”  Determined to keep a straight face and NOT laugh out loud, I realized she meant Lt. Col. Dave Grossman, who I had just met at his Lynchburg, VA seminar.

“Yes, he’s one of the people working hard on making schools safer.  You know who else was there?  A whole lot of students.  They were all college students at Liberty University who want to learn too.  In fact they ran the whole day and got “The Colonel” there!”

“And they’re all in the family?”

“Yep. All of ‘em.”

-MG

I’ll post more soon on my travels and the inspiring folks I have been meeting and learning from!

 

 

 

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