PARENTING A SPECIAL NEEDS CHILD DURING QUARANTINE
Originally published with the Local Mom’s Network https://thelocalmomsnetwork.com/quarantine-special-needs/
Sara Hood has met many challenges over the course of her life. Born into a Sudanese refugee camp, she recovered from a heart attack at age 23 after the birth of her first child, Josiah. Now 9, Josiah has autism, and she is a fierce advocate for him and other children with special needs. (For more, read our Meet a Mom interview with Sara.) We spoke to Sara about quarantine challenges, particularly in terms of Josiah’s needs—and how she has adapted and help her family thrive during this stressful period.
Can you share a bit about how Josiah’s autism and how it presents itself?My son Josiah is 9 years old and has non-verbal autism. He also experiences epilepsy, challenges in fine motor skills, and developmental delays.
What has the quarantine and coronavirus shutdowns been like for you and your family?It was terrifying initially and sheer panic. The ultimate fear was regression. We did years of work, and I was afraid it could all go down the drain because any regression could be so detrimental and have a lifetime effect.
We can work 6 weeks on a skill, and if we don’t work on it for 3 weeks he could lose it and it takes 2 months to regain it. The key to success for parenting special needs children is structure and routine, which the pandemic quarantine completely disrupted.
Due to the quarantine we lost daily on-site access to our entire team ABA, occupational, physical, vision and speech therapists – most of which were accessible through the school Josiah attends which is great. This team deactivated immediately due to the quarantine, which is scary as hell for a special needs parent. It sent me into immediate panic. I’m a planner, but suddenly there was no plan for one of my worst fears, regression for Josiah.
How are you dealing with these changes for Josiah?Each one of Josiah’s therapists had one-on-one instruction with him, but because of the quarantine all those responsibilities and the weight of maintaining his development fell on me. I’m only 1 person with the support of 2 others in our family at the most. Plus, I work and have another child, so I had to figure out how to split myself to do online schooling for both sons, while giving 100% to Josiah so he doesn’t regress.
There was a 2-3 week delay initially with the school putting together an online curriculum. So those first 2-3 weeks were horrible. I’m sure my form of teaching was wrong. Josiah is non-verbal so he was restless and frustrated with the change in his routine, but unable to fully express it.
But after 3 weeks I figured out a plan. For each week I have an entire curriculum and schedule that we follow from 7:30am-2:30pm. We have a morning virtual meeting every day with his teacher to go over the daily schedule and finalize what should and should not be worked on.
We also put a massive calendar on the wall, that everyone in the family has access to. We engage Josiah and have him pull a tab off the calendar for each class and activity once it’s about to start. It’s so much easier to work with him without him being frustrated if he knows it’s coming, versus throwing subject after subject at him. Plus, we engage the entire family, so it is a team effort. I try to channel the Bulls championship teams during the 90s with a triangle educational effort, ha!
I’ve also been taking online classes late at night via Google & YouTube University to enhance my teaching skills for Josiah’s developmental needs.
That’s amazing, and inspiring. How have you talked about COVID-19 to both your kids?My 8 year old son Jeremiah asked why we can’t go anywhere he likes to go, like the park. I told him there’s a virus that’s making people REALLY sick, and it’s making them have to go to the hospital. It happens from not washing your hands and going out, so we have to stay at home and wash our hands often to stay safe. They had no problem after the explanation, and said ok…and went off to play.
When we turn on the TV they can see all the talk about coronavirus. My boys also know the power of Amazon, because they know anything they want that we order is coming via that Amazon box.
Ha! How have you dealt with your own stress during this time?WINE, ha! The first 3 weeks I did not do a good job of coping with stress at all. I wasn’t eating or sleeping right and fell off. I normally go to the gym 5 days a week, but had to stop immediately. But once I recognized that, I adapted to the new stay at home normal. When the kids go to bed by at 7:30pm, from 7:30-10pm is me time. I also do daily walks around lunch time.
Do you have any advice for anyone who is struggling with all this extra responsibility and “to-do’s”?My advice is to DO YOUR BEST, AND KNOW THAT IT’S MORE THAN ENOUGH! Relinquish control and the desire to be perfect at everything, and it will all begin to workout. No human is built to wear all the hats we’re asked to wear during this time (Parent/Teacher/Coach/Therapist/Chef/etc-etc). So manage it all the best way you can without trying to force everything single thing to work out to perfection.
You also have to take at least 30 minutes of me time to be silent, exercise, meditate, write, create, journal or whatever it is that puts your mind, heart and spirit at ease.
You can’t parent at your best if you’re not ok, so self-care. Also don’t sleep on the value of a Zoom call or chat with a friend, relative, or other Moms that you can bond with during this time. You’re never alone.
And be present with your kids. You have so much time to spend with them. If you can make it through quarantine without anyone needing therapy, that is the ultimate win!
That’s great advice. What is your favorite at-home workout lately?I created this for my personal influencer brand and am following a 30 Day workout challenge to hold myself accountable, even going on Instagram Live on Saturdays and doing them. Here’s my fave routine:
– 4 Sets of 12 Rows (if no weights use detergent or anything in the house)
– 4 Sets of 4 Sets of 15 Squat Jumps
– 4 Sets of 15 Donkey Kicks (per leg)
– 4 Sets of 45s Planks
– 4 Sets of 12 V-Sit Ups
– Walk or Jog 1-2 miles
Has anything positive come out of this strange time for you?ABSOLUTELY! It forced me to expand what I’m capable of!
I love what I do as an influencer, and found that when I’m not creating, giving, or living on purpose – I’m not fulfilled. I was stressed because I wasn’t focused or productive. But once I realized that all I can do is my best, and my best is more than enough, I was good.
When I took that load of stress off my back I was able to create 2 e-cookbooks I gave away for free, a 30 Day workout challenge e-book, I began doing IG Live interviews with other influencers, I did my first cooking class, countless TIKTOK videos, haha – and for ordered food to feed 3 entire hospital staffs during the quarantine. I found a way to live my best life by continuing my Lovestyle of living on passion and purpose, and giving from the heart in even more ways that I enjoy.
I’ve also found ways for my kids to thrive during this strange time, because I understand their learning styles even more and what works best for my personality. I can uniquely teach math & science through cooking and gardening while also having fun. And the most beautiful part is we’re creating memories!