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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

If a crisis occurs in the school or anywhere in public, it can be a very daunting experience for anyone, especially if they are not prepared. But, imagine what it would be like for a student with autism spectrum disorder (ASD). Children with ASD have a difficult time responding to changes or interruptions in their schedules. They not only need structure, repetitiveness and consistent schedules, but they also must have access to the resources and tools to keep them safe.

At The Doug Flutie Jr. Foundation, our mission is to help families live life to the fullest. Through our programs and partnerships, people can access the services they need to lead active lifestyles and build their adult independence. Safety and preparation for a crisis situation is crucial for families to consider. This is why it is part of our core mission.

To give parents peace of mind, or at least help them prepare in case of an emergency, we have supported several safety initiatives including ALEC and SafetyNet Tracking Systems. Through Joey’s Fund, we have funded multiple fences for families who are concerned about the safety of their child but cannot afford to pay for one.

ALEC (Autism and Law Enforcement Education Coalition) is a first responder training program that provides an in-depth understanding of ASD to public safety and law enforcement personnel. We have supported ALEC’s Community Days in the Boston area to spread awareness about this safety program. ALEC’s Community Days allows individuals with ASD and their families to meet and interact with police, firemen and EMS in a non-emergency situation in their community. More information can be found through the Arc of South Norfolk at http://www.arcsouthnorfolk.org/alec-first-responder-training.html

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For over five years, we have also partnered with SafetyNet Tracking Systems (formerly LoJack SafetyNet) to provide children with autism GPS tracking bracelets through the Flutie Foundation’s Safe & Secure Program. This service enables public safety agencies to effectively search for and rescue individuals with autism who wander and go missing. SafetyNet not only provides the equipment for local law enforcement but offers a comprehensive training program to first responders. The program allows first responders to become familiar with the communication challenges an individual with autism may have and can adapt their search to rescue and return the individual home safely.

Another great resource to consider is Life Journey Through Autism: A Guide to Safety developed by Organization for Autism Research. It is a comprehensive guide for parents on safety issues and strategies to consider. It includes an Appendix for School Safety and Crisis Planning. You can download the guide for free at:   http://www.researchautism.org/resources/reading/index.asp#AGuideToSafety

Although we cannot prevent every tragedy or prepare for all crisis situations, we can better protect this at-risk population by educating ourselves and taking advantage of the growing number of safety resources that are available for individuals with autism.

Lisa Borges is the Executive Director of The Doug Flutie Jr. Foundation for Autism.

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Additional Resources

The National Autism Association has a lot of great resources and safety products for parents as well as a Safety Teacher Toolkit for educators in need of wandering prevention tools.

The Autism FYI Organization– their mission is to promote a safe environment for the increasing ASD population in their existing communities and is in the process of establishing a national registry for safety.

Autism SpeaksAutism Safety Project

 

 

Screen Shot 2016-04-12 at 10.23.19 PMWe are an autism family.  We will always be.  Our daughter’s short life on earth was a journey for our family—a journey through autism into faith, hope, and compassion.  Through Joey, we learned to look at the world differently, hold onto each other tightly, and love each other fiercely.  Although her journey through autism came to a tragic end on December 14, 2012, we are committed to sharing with others all that she taught us.  In her honor, we share our experiences and support other families on this journey through autism and work to keep ALL students safe in school.

Supporting Children and Families with Autism

Joey’s Fund is one way that we aim to support families and children living with autism.  We created Joey’s Fund in honor of our daughter’s generous and compassionate spirit.  While living with autism, our family relied on the support of many other families—some with autism and special needs children, and many on a more “typical” family journey.  Providing direct support for other families with autism is our way of giving back in Joey’s name and thanking the many people that supported us during Joey’s life and after her tragic death.  We chose the Doug Flutie Jr. Foundation for Autism as the home for our daughter’s fund.  The Flutie family continues their journey through autism and supports many others along the way.  We are proud that Joey’s Fund is a part of their mission to serve some of the most amazing people in the world:  autistic children, adults, and families.  We are honored to remain a part of the autism community in this way.

Autism and School Safety

Our autistic children––with all of their gifts and challenges––are some of the most precious and vulnerable members of our communities.  Most parents find that sending their child off to school alone for the first time is a great challenge.  Imagine how it feels for the parents of an autistic child.  Like many children living with autism, our daughter could not speak for herself and could not communicate her needs without the help of caring adults and peers.  Our autistic children face all of the childhood challenges and dangers of their typical peers—and exponentially more, because of their autism.

We relied on a well-educated and highly trained school staff to keep our daughter safe on a day-to-day basis; but, it was up to us to ensure that her unique safety needs were provided for while she was in school.  Her physical safety on the playground, in the classroom, and in the cafeteria required constant supervision. Like many autistic children, she loved to wander, was attracted to water, and had complex dietary requirements.  Her social-emotional well-being depended upon the facilitation skills of the staff.  She needed trained, caring professionals to help her play and interact with her peers in order to develop relationships and friendships and help her communicate her ideas, needs, and wants.

And let’s not forget her peers. Joey was young and lucky enough to enjoy true friendships with many of her classmates. Friends like Emilie, Jessica, James (and too many others to name!) were the highlight of her school days. There are no words to express the gift that Joey’s friends were to her and the family that loved and protected her in this life. Yet even her exceptional peers needed a great deal of support to understand and safely play with Joey. The safety of her beloved friends required the support of an attentive and caring school community.

Not a day goes by that our family doesn’t think about Joey.  We consider ourselves blessed for the time we had with her and on our journey through autism.  We know we are blessed to have her inspiring us in our missions: Joey’s Fund and Safe and Sound Schools, working to improve the lives and safety of precious people like her.

Michele Gay, Executive Director, Safe and Sound Schools
Photo credit:  Cynthia McIntyre Photography