It’s Not All Sunshine and Rainbows
Times are hard right now. For everyone. And if you’re a parent of a child with a disability, being off school isn’t as “cute” and “pretty” as it may seem across social media.
I’m not saying every minute of every day is hard, but it’s not all fun crafts and cookie baking either.
As I sit and reflect after a very difficult day, I want to express my feelings and the reality so many families are facing right now.
You see, cancelling school doesn’t just mean no school for a few weeks…
No school for our son means
-No speech therapy
-No physical therapy
-No occupational therapy
-No ABA
-No routine
-No structure
-No consistency
AND no school.
Sounds like a lot right?
It is.
Our son gets medically necessary supports and therapies every single day. Some of them are multiple hours per day or all day long.
And when you take that away….
The fear of regression starts creeping in.
Our Bubba has worked so incredibly hard to be where he is today. And he would not have the skills that he has WITHOUT all of the services I listed above.
This is more than just “social distancing”.
Trust me, we are pretty good at social distancing when we have to. We’ve been doing it for years because…well, autism.
But this is different.
This is life altering.
And it is now my job as his mom, to become
His Teacher
His Occupational Therapist
His Physical Therapist
His Speech Therapist
His ABA therapist
AND continue to be his mom, his caregiver and his advocate.
Oh, and don’t forget we have 2 other children that need supported and loved through all of this too.
I am extremely grateful for our school district and the supports they are providing during this difficult time.
But this is HARD my friends.
And we are all doing the best we can.
I want you to know that you are NOT alone in this.
My anxiety is at an all time high and my fear of Ethan regressing is real.
It’s scary. I know it. You know it.
But what I’m trying to focus on is to control the controllable.
There are so many things out of our control right now and it makes things really intense.
If I allow myself to feel too overwhelmed and sink down into the rabbit hole, then my kids will too.
So, instead, I take control.
I may not have the same education and experience as all of the wonderful people who work with Ethan every day…
But I what I CAN do for him is support him.
I can encourage him.
I can help him.
I can provide the tools that he needs to continue to learn.
I can teach him kindness, patience, and strength.
I can demonstrate how we get through hard times as a family and especially when things are scary and unknown.
And I can be here to love him through it all.
Bubba, I will probably fail at something every day, but I promise you that I am doing the best I can for you and your brother and sister.
And we will get through this TOGETHER.
Written by, Christina Abernethy
Christina is a dedicated wife, mother of 3, and passionate advocate for people impacted by disabilities. She has served on local committees, coached an adaptive cheerleading team, and won awards for successful fundraising endeavors including those for “Team Bubba,” honoring her son with autism. She is the founder of Love, Hope and Autism and is proud to be the coordinator for Changing Spaces Pennsylvania, a movement to build accessible restrooms with powered height adjustable adult sized changing tables across communities to promote inclusion. She is working with legislators to pass a bill in Pennsylvania that would require such facilities in hospitals, airports, museums, rest stops, malls and more. Christina is committed to spreading a message of heightened awareness and acceptance of differences, ultimately inspiring hope. She is also a coauthor of the book titled “You Are Not Alone: Stories, Resources and Hope From Autism Moms”
Interested in writing for Finding Cooper’s Voice? LEARN MORE
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
