Testimonial: "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." Parent
It’s not all sunshine and rainbows
3 April 2020
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?
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 son 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 two other children that need to be 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 the fear of my son 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 my son 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.
I will probably fail at something every day, but I promise him that I am doing the best I can for him and his brother and sister.
And we will get through this TOGETHER.
Christina AbernethyRead more Real stories