Autism x 2 in Isolation - Autism Awareness
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What to do with your autistic child during corona virus isolation

Autism x 2 in Isolation

I am the parent of two children, now adults, on the autism spectrum. Marc is 23 and Julia is 21. They’ve been out of school for almost 3 years now. We’re constantly at work building skills, expanding interests, exploring new recreational activities, volunteering in the community, exercising, cooking, and furthering their education. Things were moving along quite well, then COVID-19 hit and our world became a different one. I’ve started to do some writing on the subject of being at home, living in isolation, and how to keep things on an even keel and moving forward, if possible. My emotions seem to be all over the place – one moment I am fine with these changes, the next I am worried. I fluctuate between anxiousness and calmness, energy, and extreme fatigue.

I think we’ve been doing as well as we have at our house because we had so many systems and a way of living in place which are compatible with this new and uncertain world we are living in.

What are we doing to cope with our isolation during COVID 19?

Structure and Routine

We’ve kept Marc and Julia’s day as close to what it always has been to keep things predictable. Julia rises at 8 am each morning; Marc at 9 am. Mealtimes, bath time, and bedtimes have remained the same. Marc has an “at home” outfit that he wears when no activities are on – sweatpants and a white t-shirt. He changes into this every morning; however when any online class happens, he changes into his going out outfit which is jeans and a t-shirt. This is because he knows there are social rules that guide his dress code. If he will be visible on camera, he knows he has to be presentable.

Julia has experienced a higher level of anxiety around COVID-19, so we’ve said it’s fine to have some days that are pyjama days because she finds that comforting. She has still retained the flexibility to get dressed for some at-home activities like baking.

Meals

Marc has wanted to be more adventurous with eating new things at dinnertime. I ask him in the afternoon if he wants to try what I am going to make and if he says yes, then he eats the new dish with great enthusiasm. I still go back to his old dinner favorites to keep him anchored – that way he knows the old favorites are always there to fall back on. His newest eating adventure has been salads – why? Because he makes a salad with his online horticulture class every Wednesday afternoon, then he wants to eat it that night. I’ve talked about this buy in to new foods which can happen when the individual is part of the preparation and cooking process.

Julia wants no changes in her diet as she would find this stressful. My concern with her is food shortages because some stores are frequently out of her staples such as rice pasta and plain pasta sauce. I try to have a few backups of alternate foods that she will eat such a chicken noodle soup. I find the key to keeping meals stress-free is letting her know ahead of time that her meal will be different and I explain why that is.

Adorable little toddler girl with rainbow

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Exercise

We’ve had an unseasonably cold spring with lots of snow and below-average temperatures. My two won’t go out in this kind of weather and have never been walkers around the neighborhood. We came up with a Wii Fit workout plan for Julia since she loves the Wii. Julia was anxious on the first day because she didn’t know how long to workout. We agreed on a time of 20 minutes and set the alarm on her phone. Not knowing when an activity will end if often anxiety-provoking so it’s important to have some way to define the beginning and end of an activity or task.

Marc is doing Wii Fit Plus and loves to jog. He began jogging in an adapted fitness course he took through the city. On Wednesdays, Marc does his yoga practice which he has done with an instructor for years. These two activities work for him because they are familiar and he has had previous instruction in order to be independent.

When the weather gets nicer, I hope we can add biking to the weekly roster. Using the bicycles built for two will ensure safety and social distancing which the kids would have some trouble doing on their own and quickly which can happen in a cycling situation.

Leisure Activities

Once a week on Thursday mornings, the kids play board games like Kerplunk, Guess Who, Mouse Trap, Trouble, and Don’t Wake Daddy. Julia really talks a lot during this time and loves cause and effect games. Card games are fun too. Marc will only play certain games like Kerplunk and then he wants to go. He doesn’t enjoy many board games and prefers more solitary pursuits like coloring and reading aloud. We respect that and let him pursue what makes him happy.

We do allow computer access all day. Marc limits his screen time; Julia does not. We found a writing site for Julia to create stories. She enjoys sharing her stories on a platform and the feedback she gets. Julia also checks in with her cat charity every day to see what new cats have come in and who has been adopted or which cat had kittens. This keeps her connected to her volunteer job.

Marc reads aloud every day for about 4 hours a day. Right now, he is reading about Johnny Cash. He adds to his experience by listening to Johnny Cash CD’s. Julia won’t read on her own, but we worked together to choose a book that I will read with her each day. She wanted a simple book so I suggested one that also had a cat in it, her favorite subject matter. I am sticking with her interests but am looking for ways to engage with her away from the computer.

Julia and her dad spend some time each day playing Wii games together. They talk a lot during this activity and Julia has success with these games. It’s fun to beat dad!

Julia also enjoys baking so we bake simple things for the family like muffins, squares and cookies. She feels great pride in helping to feed the family. This has been a regular weekly activity since school ended so we’re just keeping it going. I’d like to try bread next.

The Arts

My husband, Ron, is a professional pianist who plays a concert on the piano for us every single day. Marc’s way of connecting with this is to go into his room and pick a CD by the same composer and listen to that while Ron is playing a different work. These musical interludes keep the house feeling very alive each day. There is nothing quite like music to soothe the soul!

Julia sings 30 minutes of karaoke every night. This is done in my office with the door closed which is everyone’s signal not to enter. She is starting to explore musicals online and adds new songs to her singing repertoire every week.

Saturday night is Netflix night; Julia looks for a new movie to watch. Marc watches DVDs throughout the week but chooses ones based on the cast. This is often related to watching a celebrity interview from an Oprah Winfrey show on YouTube. Speaking of YouTube, Marc has been revisiting old documentaries that he watched when he was in elementary school like Floating Palaces and Transatlantic Liners. He has fond memories of these programs and they are giving him comfort right now.

Self-Care

As a full-time caregiver with almost no breaks now, taking care of myself is more important than ever. I go for a walk 3 – 4 days a week, read (something not autism related), take webinars, do free online courses on fun topics through Future Learn, cook, keep up with friends, write, workout online with my figure skating group, attend online socials with friends, and find interesting things to stream in the evening. There is no TV on before 5 pm and there are quiet times throughout the day. The kids start getting ready for bed at 9 pm and retreat to their rooms after baths until lights out at 10:45 pm.

No one knows how long this isolation will last. While living like this, it’s important to maintain a structure to the day, uphold routines, and engage in activities that are comforting. It can take weeks for a new routine to become a habit so be patient with the changes and wait for new patterns to take hold. Some days will be better than others. Be kind and gentle on yourself and your loved ones. This too shall pass.

 

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6 Comments Moderation Policy

  1. Colleen says:

    Like always, I learn so much from you. Thank you for letting me know how you & your family are doing. God bless you! Stay amazing!

    • Thanks for your kind words, Colleen. You always encourage me to keep going and appreciate what I am trying to do. It means a lot to me, especially during this time of isolation. I hope you and your family are well too.

  2. Heather says:

    I love reading your blog posts! You are very inspiring and have such a wealth of knowledge on this subject matter. I’m sure your journey as a parent to two children with autism wasn’t easy, but you sure make it look that way! You sound like you are all doing very well during this pandemic 🙂

    • Heather, thank you for your kind words and encouragement. I really appreciate it! There is not one things I’ve done that has been easy. It’s all required a consistent effort and hard work, but it also has to do with what my children see every day. They see their parents work hard, are respectful to each other and they live in a lovely environment with no TV on and live music. We took our cable out years ago. My daughter is actually doing better in this pandemic than she was before because she doesn’t have to go out every day and navigate the outside world. Her anxiety levels have dropped significantly. Marc needs more of the outside world so we are bringing that to him with online classes in music, horticulture and private tutoring. He continues to thrive in spite of this isolation. I hope you are doing well too. I do worry about the future, particularly with my conferences, but if I need to adapt, I will. I am a survivor, always have been. Have a wonderful day and thank you for taking the time to write.

  3. Lynn says:

    Hi Maureen,
    Thank you so much for sharing your routine–it is so encouraging to see how the structure you have in your home is so soothing for your family.  The nice days are easier because my son loves to play outside–even in the cold weather.  The homeschooling is going well and I am grateful for this.    I need to do a better job organizing the day and will use your schedule as a starting point to introduce some more structure.  I am also working full time, which is a challenge, especially with the on-line meetings.  It is also great to see that you are taking time for self-care–often neglected, but so important.  Thank you for starting my day with such an inspiring email.
    Take care,
    Lynn

    • Lynn, thank you for taking the time to write. It’s nice to hear from you. I, too, am still working near to full time hours. I literally have to hide in a room to do online meetings and have a few of those every week. Since I work in the field of autism, everyone is understanding if I have to cut something short or if there is noise in the background. I asked my daughter to leave me alone in my office a few days ago to be able to write and she was back in 15 minutes, saying she was lonely. I am trying to look upon this pandemic as giving me a special opportunity to be able to live in a way that would never be possible, take extra time with my children, and produce as much writing as I can while in this bubble that has very little distractions. Self-care is very important and I learned that the hard way years ago after suffering a nervous breakdown when my children were little. I was no good to anybody in that state so now I schedule time for myself. It also teaches my kids how important it is to take care of themselves. Marc does his yoga all on his own and developed his own meditation routine to classical music. He’s been going back to past things from his childhood that he hasn’t revisited in years which is giving him great comfort. He even does little Thomas the Tank Engine quizzes every day.

      I wish my kids were better at getting outside, but I think we can get the bike riding going pretty soon which will be great for them. We had such established home routines before the pandemic because I am here on my own most of the time with my husband rehearing and playing recitals all the time, so the routines just needed a little tweaking – hence that predictability stayed in place. You have a great day and stay safe and well.

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