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Special Needs Advocating During the Pandemic

A mom of a teen with autism shares what she’s learned about supporting her son’s needs during the pandemic.

Special Needs Advocating
Eileen Shaklee

As a parent to a teenager with autism, I’ve become used to the fact that even the most mundane tasks have a tendency to be slightly more complicated to figure out. After many years of parenting with these conditions, I had figured out the tricks that worked. I knew what accommodations would suit my son the best. Then COVID hit and everything I knew about parenting a special needs child went right out the window. Here are some of the things I’ve learned from this and how it changed my autism parenting experience.

No one knows what they’re doing.
I had to accept there needed to be a learning curve for everyone. Let’s remember none of this is normal. Teachers are teaching while their own children are being taught on laptops by other teachers. Teachers, therapists, students and parents were all learning how to use new computer programs together at the same time. The standard household WiFi is suddenly screaming for mercy. I had to expect and accept that there will be bumps. (And that our pets would make cameo appearances.)

Emails, texts and classroom messaging apps became my receipts.
That’s not so much to catch someone dropping the ball but to make sure that everyone was on the same page. I realized within the first week that I needed to get them organized into categories (academics, therapies, Zoom/Google Hangout invitations etc…) because suddenly my inboxes were exploding. It’s great to have the facts on file when you need to point out an issue. If you can’t find it because it’s buried in an inbox with hundreds of emails about sales at Old Navy or CVS, it’s not going to do you much good.

I heart virtual meetings.
Throughout the year I’ve discovered I absolutely love the virtual meeting experience and frankly, I don’t see myself ever going back to an IEP or a parent/teacher meeting in person ever again. My son is a teenager and I’ve never seen meetings be so efficient in my life. Every single one of them starts on time. Every person in them gets right to the point. There’s little to no “chit chat” or veering off topic. It’s all business and it’s fantastic. Virtual meetings are time savers for everyone. Plus, hello, I’m in my slippers at home while my child is doing his own thing on the couch next to me. Comfort and not having to figure out child care? Priceless!

Schedules are life.
It’s not just my autistic child that loves his routine. I realized during all of this that a schedule is very important to me as well. It can be easy to feel overwhelmed and out of control during all of this, so I eased my own anxiety by following my son’s lead. I made a schedule, right down to when we would eat lunch and have “free time” where I allow myself to do something frivolous like watch Netflix or play a game on my phone. Somehow checking things off the list became comforting and helped make me feel like time was going by faster.

Never underestimate what your kids can handle.
My kid loves to prove me wrong and this pandemic experience has been no different when it comes to what he can and cannot handle. I wasn’t sure how my son would take to “laptop learning” but I guess I forgot this is a child who has never not had computers in his life. While it isn’t always smooth sailing and I know he will always prefer the in-person experience to the virtual one, I know he can do it when necessary. Same with masks. I didn’t think he’d wear one but then he saw everyone else putting one on and he just accepted it as his new normal. If your child still has trouble with this, keep trying every day because he or she can do it.

I had to make my peace with days that are less than perfect.
There are days where my son gives “kitchen school,” as he’s dubbed it, a serious case of side eye. There are topics that just don’t translate over a laptop. For us the biggest challenge was art class. He wanted nothing to do with it and it became such a source of stress for us. One afternoon I just thought “enough” and wrote a “come to Jesus” email to his art teacher explaining what was going on and what would not be anymore. Believe it or not, she totally understood and was able to make accommodations that were a much better fit. It’s important to communicate what is and isn’t working at home to the teachers. They won’t know until you tell them.

This was the year of life skills.
At the start of 2020, kiddo was going off campus at various job sites as part of his pre-vocational training for school. I really didn’t want him to miss out on those valuable skills. Even though he can’t work in the retail spaces at the moment, we can continue to work on the skills at home. If he had time to lean, he had time to clean. My kiddo became the master of the vacuum, helps out with the laundry, wipes down the kitchen table, helps organize the pantry and can now make a mighty fine cup of coffee. These are all skills he can use when it’s safe for him to return to his job training and life as we once knew it.

—Eileen Shaklee, aka Mama Fry, lives in Wall Township and blogs at autismwithasideoffries.blogspot.com

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