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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

As parents of children with autism, we already know firsthand the many challenges associated with keeping our kids safe, both in and out of school. The nature of our child’s disorder often presents a wide range of behaviors that can make their safety our full-time job. Wandering/elopement, PICA, choking, water fixations, inability to communicate in an emergency, and general situational fearlessness mark a few of the many things we face (or simply worry about) on a daily basis.

The statistics from the National Autism Association speak for themselves:

  • Approximately 48% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • Two in three parents of elopers have experienced a traffic injury “close call”
  • More than one-third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number

I know how easy it is to become consumed with debilitating fear every time your child is out of your sight. When my daughter, Jenna, was younger, I often felt powerless to protect her – or, to even be able to predict how she would react and respond in any given situation. Now, as she’s approaching 15-years old, I understand that while parents of children with autism have to be exceptionally vigilant at all times, we do have resources and options available to support us in our efforts to keep them keep them safe.

Create Your Safety Plan

Every family has their own safety routines for their child with autism. Over the years, my husband, Jonathan, and I have learned and implemented various tools, tips, and technologies into a cohesive safety plan for Jenna. For example, we know that every time we enter a room, we assess available exits and create a strategy that ensures Jenna is continuously monitored by one of us. We keep a window decal on Jenna’s side of the car that alerts first responders that Jenna is unable to communicate her needs in the event of an accident, and we take photos of her, almost daily, in case she wanders off and we need to tell responders what she was wearing.

Aides

Often, parents assume that a 1:1 aide will be able to handle whatever safety issues arise and make modifications on the fly. It is important to be sure that the aide is well trained and equipped to support your child in a variety of emergency situations. Does your child’s aide carry emergency essentials that your child might require (lollipops to stay quiet during lockdown, fidget toys to stay occupied, first aide items)? Has he/she been trained in all safety protocols and equipped to carry them out? Does he/she have keys to the classroom door? What about communication capability (i.e radio, cell phone, office call button, access to the PA system)? Or a wheelchair or “stair chair” to assist in transporting or evacuating your child if necessary?

Other useful resources we’ve incorporated into our safety routines include:

IEP’s

Most parents don’t realize they can have safety goals and emergency plans outlined in their child’s IEP. Always discuss your child’s specific needs with the school administration and Special Education director to put a detailed plan in place.

Tracking Device

We use the SafetyNet tracking device to help keep our daughter safe. Worn on a child’s ankle or wrist, this device ensures that should she wander off while wearing the tracker, police/fire department can quickly locate her.

Similarly, many parents use the Life360 app for children who have their own smartphone.

Alarm System

We installed an active alarm system in our home that instantly alerts us whenever a door or window opens. The alarm enables us to respond quickly should Jenna wander off.  There are many low tech ways to alarm the doors of your home, from hanging bells to installing individual door alarms that you can find at your local hardware store.

Car Locks

Keep those “kid safety locks” on at all times to ensure your child can’t open the car door while the vehicle is in motion. Yes, you will inevitably inadvertently lock your adult friends in your backseat at some point – they will forgive you.

Partnering with First Responders

Our town offers the Erin Program; a program created specifically for special needs families. Parents create an emergency profile for their child to help first responders in the event of an emergency. All personal information is securely stored and not made public. Contact your local police or fire department to see if your town offers this program or something similar.

No matter how many apps we download or strategies we implement, we will always worry about our children and their safety – as all parents do. However, for parents of children with autism, continuously tapping into the resources available to us can deliver the much-needed peace of mind that we are doing everything we can to advocate for and protect our kids at all times.


Susan Parziale is the Administrative Coordinator for Safe and Sound Schools and lives in Boston.