Home Schooling and Home Therapy During COVID-19

It’s April 4, 2020 as I write this and COVID-19 continues to spread. Schools and day-care establishments are closed. Personal interaction with persons outside your household is dangerous. All of which means that we autism grandparents who do a lot of caretaking of our autistic grandchildren have one more thing added to our plates: how to contribute to our grandchild’s continued “progress” – her education and therapy.

Of course each of our situations is different. I’ll share a bit about mine. I take care of 4-year-old Angelina while her mother (Kelly) is at work as a full-time nurse in a COVID unit of a major hospital. This means 50 or more hours each week. Prior to COVID-19, Angelina was a student making wonderful progress in an ABA program at the Faison Center, so now our concern is for her progress to continue. 

I still don’t have my act quite together regarding schedule, structure, and curriculum, but I've done three basic things in preparation. 

1. I’ve searched the Internet for advice and have determined that an article published on the website of Autism Speaks, “How to cope with disrupted family routines during COVID-19,” provides good fundamental advice for my situation. I’m so glad the article includes this final paragraph:  “Try to be patient and realistic as you adopt a new schedule. Getting consistent with a new routine, particularly when things are quickly changing day-to-day, means things won’t be perfect. Start small, with more loose structure, if that feels less overwhelming. Involve your children in planning for their learning and the work of the family. That may help them cope better if things change over time. And, remember to schedule breaks – for everyone – throughout your day.”

2. I’ve made a list of a few of the things that I’d like to see Angelina involved with during the coming months of COVID-required home schooling: learning to dress/undress herself, drawing letters and numbers, enunciating, reading to her, keyboarding (learning to use mouse, press keys, etc.), music, physical activity (both indoors and out), cooking, and household chores. 

3. I’ve asked the folks at the Faison Center to send recommendations for home schooling and they responded with a wonderful 10-page document with illustrated and outlined suggestions. For example “Two-step Instructions” is one area for concentration. For example, “Put the toys in the bin and put the bin on the shelf.” This page lists several examples of such two-step instructions and how to respond when Angelina responds correctly and when she doesn’t. 

Now my job is to sort through all of this, evaluate my energies and abilities, and then construct a program and give it a try. Then modify things as I determine even better content and methods. But most of all, remember that last paragraph of the Autism Speaks article:  “Try to be patient and realistic as you adopt a new schedule. Getting consistent with a new routine, particularly when things are quickly changing day-to-day, means things won’t be perfect. Start small, with more loose structure, if that feels less overwhelming. Involve your children in planning for their learning and the work of the family. That may help them cope better if things change over time. And, remember to schedule breaks – for everyone – throughout your day.”

I would LOVE to hear YOUR thoughts about your own home-schooling/therapy methods/programs!

Grandparents and COVID-19

As I write this it’s March 28, 2020, and COVID-19 has caused all of us to take a new look at everything in our lives. And we autism grandparents of course have special challenges. What can we do to be most helpful? And what SHOULD we do to prepare for today and for the weeks and months ahead? Each of us has a unique set of circumstances. I wonder if my own four areas of priority attention match those of other autism grandparents. 

First, a brief reminder of my situation. My granddaughter, Angelina, just turned 4 years old. I keep Angelina when her single-mom mother, Kelly, is working at her full-time nursing job in a major hospital. Angelina is generally happy and healthy and is currently predicted to be high-functioning. Angelina is enrolled in an ABA “school” but it has closed due to the virus.

COVID-19 is not yet experiencing a major eruption in my city, but it’s coming. 

Here are my four basic areas of fundamental focus right now.

1. Communicating constantly with Kelly to determine plans for now and for the forthcoming virus-influenced months. Plans that involve a variety of questions. Given that Angelina will be away from school for awhile, should we put in place school-like things for her at home? What is the protocol for OUR social distancing within our family? Etc.
   

2. Searching the internet for helpful information. I’ve learned that the Autism Society of America’s website (autism-society.org) has a COVID-19 Toolkit that’s organized into the following six topics: “Mental Health & Respite,” “Modifying Routines,” “Lifestyle Supports,” “Education,” “Public Policy,” and “Facebook LIVE.” The Mental Health & Respite section, for example, provides a link to a site that lists organizations that can provide respite support and that can be searched geographically. It lists 53 organizations that are within 50 miles of my house. The Mental Health & Respite section also provides a link to the AARP’s Family Caregiver Hotline. The Facebook LIVE section, for example, is offering a March 31 meeting on “Continuing School Work and Education at Home.” My local Autism Society ’s website also provides helpful resources, including offering “Virtual Support Groups” for various categories of autism caregivers. And the website of Autism Speaks (autismspeaks.org) of course offers important resources. For example, there’s a 3/24/20 article entitled, “Priorities for the Autism Community During this Time of Crisis,” a 3/13/20 article entitled, “How to cope with disrupted family routines during COVID-19,” and another entitled, “How to handle school closures and services for your child with autism.”
   

3. Preparing my household for much greater visitation by my granddaughter. Now with Angelina’s school closed, she is at my house at least 50 hours each week - including overnight whenever Kelly works the night shift. Prior to COVID-19 Angelina was in school 6 1/2 hours every weekday. School is now closed for an undetermined number of weeks/months. I’ve bought additional clothes, groceries that Angelina likes, and other staples that help care for Angelina - all to lessen the burden of Kelly having to bring a big bag of stuff each time she brings Angelina. I’m slowly transforming the areas of our home where Angelina spends most of her time - transforming them to be less boring, more engaging, even more educational. And I’m doing the same with our tiny yard.
   

4. Being proactive on how I can further lessen the burden on Kelly. JC and I are already very supportive in lots of ways, but are there additional things we can do? Buying additional clothes for Angelina to have when she’s at our house is something we hadn’t done before. Offering for Angelina to stay overnight sometimes even when Kelly isn’t working the night shift is something we’re now doing. We’re trying to think of more as I write this . . .

COVID-19 will result in a fundamental change for our society. We autism grandparents can provide significant assistance and resources to help our children and their children adjust and even thrive.

John's Story

My daughter Kelly, a full-time nurse at a major hospital, and her 4-year-old daughter, Angelina, who is autistic, lived with me and my wife from Angelina’s birth until just a few weeks ago. I’ve been Angelina’s primary caretaker when Kelly is at work.

Angelina was a micro-preemie — born at 25 weeks and weighing 1 ½ pounds. She spent her first 130 days in the NICU and survived lots of bad stuff. When she came home she was tethered to one wire and two different tubes, but all of that is gone now and she’s healthy and happy.

I suspected autism at about 10 months – no eye contact, no smiles, and other things. She was officially diagnosed the week she turned 2. A few months later she entered a school that provides ABA therapy. Her developmental pediatrician currently predicts that Angelina will be what they call “high functioning” but of course it’s only an early prediction.

Angelina sleeps well, eats well (after initial years of troubled eating), is beginning to talk in full sentences, and continually makes progress. Yesterday, for example, she started saying and gesturing “rock, paper, scissors.” I asked her if she’d learned that at school and she said yes. This sort of thing is a big, big progress step for her.

Angelina has so many good qualities. She is generally happy, is able to play by herself for extended periods, is very social (she loves to engage with others, especially children), and enjoys learning. (And she’s making great progress on being 100% potty trained!)

My wife, JC, is a full-time artist with local teaching responsibilities and annual international residencies. JC’s chemistry enables her to give Angelina unconditional love and attention and hugs and kisses and understanding. My chemistry is a good fit for the need for timing and details: how to deal with Angelina’s medical needs, how to get her in and out of her carseat and deliver her on time to school and appointments, remembering to include all the right stuff in her bag, and myriad other details and procedures. Thus JC’s most valuable role as a grandparent is providing love, and one of my valuable roles is providing attention to detail.

As I write this, Angelina has just had her 4th birthday and there is bright hope for her future.