FaceTiming (or Zooming or Skyping) with Our Grandchildren

Those of us who are long-distance grandparents have to rely on remote methods to communicate with our grandchildren: snail mail, audio-only telephone, and visual methods such as FaceTime. The visual methods can provide the most rewarding interactions.

It is important that we realize that children on the autism spectrum often have challenges interpreting cues such as tone of voice and facial expressions. Nonverbal children may use sign language and/or language devices that we don’t know how to use. BUT it is possible for us to have meaningful FaceTime interactions.

Just three rules:

1. PLAN THE CALL IN ADVANCE. Just the normal “How are you doing?” or “Tell me what you did today?” or “When are you coming to see me again?” types of random conversation often don’t result in engaging conversation. Our job is to plan something that is immediately engaging. (More about this later.)
   

2. HAVE LOW EXPECTATIONS (but high hopes). Our call may well result in zero interaction, so we don’t want to set ourselves up for major disappointment. We should understand that it often takes time and persistence to develop a strategy for meaningful FaceTime interactions.
   

3. MAKE IT SHORT. A one-minute happy and engaging interaction is cause for celebration; a five-minute, one-sided silent “conversation” isn’t cause for celebration. Once we establish a strategy for meaningful engagement, we can expect future conversations to be longer and longer.

How do we plan for a FaceTime call? It’s often best to base the call on something that our grandchild likes: a favorite movie (”Frozen”?), a favorite topic (dinosaurs?), a favorite activity (bowling?), a favorite celebrity or group (the Wiggles?), a favorite relative (his mother?), etc.

My granddaughter loves Peppa Pig, so I gain her immediate attention and interaction when I begin a FaceTime session while holding a Peppa Pig figure and having Peppa “talk” to my granddaughter.

If your grandchild likes cooking or helping you cook, perhaps the following would be a successful 3-minute FaceTime experience. “See this carton of eggs? I need your help. How many eggs should I crack so I can cook scrambled eggs? Ok, now watch carefully so you can give me advice on how to crack them . . . And I want to add some milk. I’ll start pouring and you tell me when to stop . . . You tell me when it’s time to scoop them out of the frying pan . . .”

Making silly faces can be a way to both entertain and engage our grandchildren. “Let’s see who can make the happiest face.” “Let’s see who can make the angriest face.” “Let’s see who can make the silliest face.” You get the idea.

At the bottom of this article is a list of ideas that you can consider when planning for FaceTime with your grandchild. But again, it is important to MAKE IT SHORT.

You may also want to consider making your FaceTime interaction a part of your grandchild’s ongoing routine: “FaceTime with Nana” – Thursday afternoons at 4pm. Or “Silly Faces with Nana,” or “Peppa Pig with Nana,” or “Storytime with Nana,” etc.

OR, perhaps you have a grandchild who is a talker, but who likes to talk about his own special interests. This may well provide your opening for wonderful FaceTime interactions: “Hi Devon! I’m calling because I need you to give me an update on your dinosaur collection.” Or, “I called to hear your latest song.” Or, “I need to find out what your dog has been doing.”

You’ll likely find that once you find a successful strategy, you’ll be able to gradually increase the length of the call and make it more and more interactive. The important thing is that you and your grandchild will have ongoing and endearing interactions.

Additional topics/strategies for FaceTime:

ARTS/CRAFTS – “Cut a Snowflake With Nana”

FAVORITE TOYS– “Toy Time With Nana”

PACKAGED GIFTS – Fill a box with a toy or toys and wrap and address it on FaceTime. Then FaceTime again when he receives and unwraps it.

STARING CONTEST – Sometimes children on the autism spectrum enjoy staring back and forth with the other person on FaceTime. You can have a visible timer or clock to help count how long.

FUNNY NOISES – See who can laugh the loudest or make sounds of farm animals or make clicks and gurgles etc.

EXERCISE OR YOGA – My granddaughter likes to copy my wife’s yoga exercises (often engaged for as long as 15 minutes).

DANCING – You can copy each other’s dance moves.

TEA PARTY – Get out your cups and saucers at both ends of the line.

MEAL – Eat together.

I SPY – Move your camera around your residence to “spy” things.

PUPPET SHOW – Use toy animals or figurines.

STUFFED ANIMALS DANCE TO MUSIC – Favorite songs.

And finally, if you’re not successful at first, keep trying. Don’t give up after one or two or three tries. Often it takes several attempts before arriving at a successful strategy for meaningful FaceTime. But it will be worth it!

What Grandparents Should Know About Profound Autism

The term “profound autism” was introduced by Dr. Catherine Lord (UCLA’s Center for Autism Research and Treatment) in September, 2021 at the Autism Science Foundation’s “Day of Learning.”

The term is offered as a substitute for other terms such as Severe Autism and Level Three Autism. Simply put, profound autism is a condition that requires 24/7 care, support, and supervision.

We grandparents of persons with severe autism can be helpful in five basic ways. First, we can learn about profound autism. (This article is a good start.) This will enable us to better talk with and commiserate with our grandchildren’s parents and providers. Second, we can modify our homes so that our grandchildren’s visits can be as safe and enjoyable as possible. (More later in this article.) Third, we can give time for caregiving so our children can have breaks. Fourth, we can give money; every lifetime of profound autism is expensive. And fifth, we can join a support group. Such groups provide learning, networking, commiseration, and friendships.

One learning tool is the 2020 book, WE WALK: Life With Severe Autism, by Amy S.F. Lutz – mother of a profoundly autistic son. Already embraced by glowing reviews, the book’s New York Times review by Judith Newman, concluded with this: “WE WALK clears a path for us toward kindness and understanding.”

Profound autism is clearly all-encompassing for the family, and lights at the end of the tunnel are rare.

Profound autism often manifests in infancy and becomes more and more noticeable through pre-school. Symptoms can include absence of verbal communication, extreme sensitivity (crowds, lights, noises), low IQ, repetitive behaviors such as violent rocking and door slamming, moaning, sleeplessness, self-injury, hitting, biting, kicking, fecal smearing, wandering, running away, inability to self-soothe or form bonds, inappropriate responses (laughing when someone is hurt), limited eye contact, no acknowledgement of others, blank facial expression, inability to communicate hunger or pain, intense fixations, and on and on . . .

Usually a variety of professionals are needed: pediatrician, occupational therapist, speech therapist, psychologist, psychiatrist (to prescribe medications), behavioral therapist, and perhaps a music or art therapist. All of this is expensive, and often there are intense negotiations with insurance companies regarding who pays how much for what.

If our profoundly autistic grandchildren visit us, we can make our home safer by locking or removing hazardous things such as medicines, cleaning materials, knives and forks, and even glass picture frames. If our grandchildren exhibit head-banging in our home, we can put padding on those areas. And we can arrange for a safe room or space for open play – perhaps a room with such items as a yoga-type ball, a weighted blanket, and favorite toys.

Unfortunately, the long-term future for our profoundly autistic grandchildren isn’t bright – thus the need for as much therapy and love as possible as early as possible. Hospitals and jails are being used more and more as “residences” for persons with profound autism when their behaviors are too severe or dangerous for family members or other caregivers. When social services and other programs fall short, profoundly autistic teens and adults are routinely spending weeks and months restrained, sedated, and/or confined to mesh-tented beds in hospitals nationwide.

“There is no safe place for the client to go,” is a recurring lament among public agencies. There are waiting lists everywhere for programs, services, and residences – waiting lists that are growing.

While there is no cure or silver bullet for profound autism, intense therapies do help, and usually the earlier the better. And we autism grandparents can be helpful in the five ways mentioned earlier.

Website Treasure-trove for Autism Grandparents

I have discovered a wonderful website resource for everyone involved with autism: the Virginia Commonwealth University Autism Center for Excellence: www.vcuautismcenter.org. I attended a recent Zoom meeting during which the Center’s Technical Assistance Coordinator, Dr. Staci Carr, provided a tour of the Center’s website offerings.

Although it is common for autism parents to be so consumed with daily challenges that they don’t have time to explore autism books and websites, we autism grandparents often do have time for that. And such research is something that we can contribute to our grandchildren’s families.

My five-year-old granddaughter still has trouble washing her hands correctly and thoroughly. Among the 34 “How To” videos on the Center’s website is one entitled, “Teaching Handwashing.” Other How To videos include “Asking for Help,” “Saying No,” “Transitioning,” and “Visual Supports” – all of which are relevant to my granddaughter.

The Center’s website offers twice-monthly, Zoom “Lunch and Learn” sessions. A forthcoming session is likely relevant to all autism family members: “Understanding Autism as an Information Processing Disorder.”

(And by the way, everything offered on the Center’s website is free. And there are no sales pitches.)

The Center offers a lot of online courses – many geared especially for educators, but some specifically for families. One that I recommend for grandparents is entitled “The Parent Playbook.” It’s a self-paced course that provides an extremely comprehensive introduction to autism.

The Center also offers online seminars – all presented by experts. Two that caught my eye are entitled, “Autism Spectrum Disorder and Employment,” and “Communication.”

And there are webcasts. One that all of us autism grandparents should view is entitled, “Introduction to the Hidden Curriculum.” It addresses many of the social skills that are not taught as part of the formal curriculum in schools: taking turns in play, understanding body language, etc.

And finally, in the Research section of the website are scholarly articles by noted experts, such as “Teaching teamwork to adolescents with autism: the cooperative use of activity schedules,” by Write, Hoffman, Hoch, and Taylor.

Dr. Staci Carr, with nearly 30 years experience working with autism, is one of 28 professional staff members listed and described on the website. (And she responds to e-mails!)

I suspect that all autism grandparents will find information of personal benefit on the website of Virginia Commonwealth University’s Autism Center for Excellence: www.vcuautismcenter.org.