I haven’t written here in a few months. Why? Because I have been doing what you are doing. Special needs parenting, at home, no respite, no school. For MONTHS.
What is happening in our world? Well, we are all still here. My atypical 8 year old son is happy and, actually thriving. My typical-brained 10 year old daughter has been designing her own upcoming YouTube channel so she is engaged and working every day. Everyone is healthy, COVID-free. But we are also self-quarantined all of the time. My husband is a fragile person, a recovering liver patient. So we are home almost always. We have our groceries put into the back of our car in the store parking lot. We pick up our medicines in the parking lot as well. And every day we go for a drive to nowhere, for about an hour. The kids bring their tablets, we bring a hotspot and we just drive. We pass by lakes that we won’t be swimming in any time soon. We drive down country roads. We listen to the radio.
And then we head back home. And the next day, we do it again.
We have a swimming pool underneath our car port and most days we spend about 45 minutes playing in the water. Both kids love it. It is our daily diversion.
So why haven’t I been writing?
Simple. Time.
My husband and I are ON. There is no down time. Even when we are “relaxing,” we need to be available for our son in a way that we don’t have to be for our daughter. We need to make sure that he is safe, keep track of what he’s getting into around the house, change diapers, and try to figure out his needs and wants when his speech is emergent but not even close to consistent. Also, he is not sleeping through the night again. So when we lay down to sleep, we may be getting back up again in 3-5 hours. There is no diversion. They don’t go to school. We are fragile so we can’t have a baby sitter. Can’t have our adult kids help when we need a break. There is just… us.
Honestly, sometimes I feel like I am living in Groundhog Day.
Yet, surprisingly, I am also enjoying this time. They are minutes and hours and days that I wouldn’t have gotten with them otherwise. Extra cuddling, extra love, extra affection, extra… them.
But I miss ME time too. And US time with their Dad. And because we are so strict about isolating away from the virus, there is no change in sight as we start online school in a few days. I miss CrossFit, which I was just starting to adapt to. I miss shopping for thrift stuff, coffee out, not being nervous just passing by someone in our small town. I miss the travel that we usually do in the summertime (not this year).
So, yes, I am affected, as I am sure that you are too. But, especially for us caregivers with lower functioning kids, time at home can also be the norm. So it’s different, but it’s not. Except for the respite. I could really use a day off.
But we are making it through. We talk about what we are going to do when the pandemic ends, the things we will make up for. We talk about places that we want to go, adventures we want to have, foods we want to eat.
I think about the goals for my son (and also, my daughter). His speech is flourishing, his OT skills not at all. PT is something he could really use right now. We need to get more focused, work on specific skills, read more, get off the tablet more.
And we will.
But for now, we are just us, at home. We are doing what works to get us through.
And that’s OK.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!