Chad and I were out for a walk when we first learned that school was closing for a few weeks. I can still feel the sick wave that came over me as I thought about having Ian at home ALL DAY! You know that feeling, right?  A mix of the unknown, paired with a little ‘that makes sense,’ while still thinking ‘how the hell are we going to do this?’

And it has proven to be a huge challenge where we have needed to change many things in how we relate to Ian and our expectations. I have to be honest, even though I love spending time with Ian, fourteen hours a day is beyond exhausting. Then there is the ongoing guilt that I am not doing enough schooling, or playing enough games, or just meeting his needs in general.  After all, his whole world has been taken away, and he truly doesn’t understand. The problem is, my whole world, as I knew it, is gone too.

The first few weeks were a blur as we stumbled through just trying to create a plan that worked for Ian. I knew for sure he needed an hourly schedule, and quite honestly, so did I for my sanity.  I quickly searched for my big 3M wipe off poster that I could stick up in the kitchen. Yep, complete with this lovely new decor, we started planning what our days would look like.

After the first week or two, the schedule began to take form. Not surprisingly, it did not end up including our original ideal schedule or the same amount of time on each subject as his regular classes had entailed. As much as I would love for him to do more schooling with me, it is not worth the battle.  He refuses to work much with any of us–not me, my husband or his sister Grace, because he does not view us as ‘his teachers.’  I cannot blame him one bit.

I suppose I could forge ahead with mighty determination and set up yet another elaborate reward chart if he sits down with me to do his multiplication, but quite honestly I am tired.  Maybe I am copping out, but I figure there is a lot of learning just being at home, and that may be as valuable as anything learned from a book, right?  Sanity Saving vs. Battle of Wills?

Eventually, it became clear that maybe with a little planning [and wine], we could get through this together. With all of us at home now, each of us helps with Ian on and off throughout the day, taking turns playing games, preparing his lunches, and supervising him every minute.

Yes, though he is fourteen, his extra chromosome often causes many aspects of his brain to be more like that of a four year old.  Leaving him alone often results in rough play with cats [which they very much dislike], cutting a hole in his bedroom window screen out of anger, or Facetiming a family member again and again.

As the few weeks turned into a month, it then turned into the kids not going back to school at all. My emotions are now running high.  Ian has lost the end of his 7th grade year, which was going so amazing, and Grace’s senior year has abruptly halted with no warning. It has started to feel to me like the world is coming to an end. My world at least.

One morning after having stopped my workout for the tenth time (I am not exaggerating!) Ian finally went upstairs and was behaving.  I sat down, looked around to make sure I was alone, and just started to cry.  Why does every single thing always need to be so hard?  No matter what I concoct at home, the bottom line is that Ian thrives on the school environment with all of the kids and the activities. We cannot mimic that at home to any degree.  He simply misses his amazing special education teacher, his friends and his routine.

Of course, I had only a few minutes to wrap that crying jag up, wipe my eyes, and pull it together.  Typical motherhood, huh? My friend Teresa hit the nail on the head when she shared how she was handling being home with her son Nick, who also has Down Syndrome.  Ian and Nick have been good buddies since they were little.

“I think it’s just a balance issue. At school Nick has five to ten adults guiding him through his day and assisting him one on one. Here, it’s just me, trying to be a patient teacher and working at the same time. Not enough of me to go around.“

I never thought about it this way, but it makes perfect sense. School provided so much wonderful support throughout the day helping kids like Ian and Nick navigate from one activity to the next, stay motivated and stay on track. They often have a new aide every hour who is fresh and ready to motivate them.  After starting my day at 6 am making Ian’s Big Nasty (a quesadilla with everything in the fridge), I can tell you I am not ‘fresh’ at 4 pm. No wonder I fall asleep at 8 o’clock on the couch.

As each day comes to a close, which I am thankful for at this point, I have often been puzzled why I am feeling  so tired.  I suppose the emotional energy that goes into all of this takes its toll. Unlike many others, I am not working full-time from home.   My company, WittFitt, provides active furniture for schools, so we are quite slow with the schools shut down across the country. I also miss connecting with teachers and feeling financially secure, of course. Even so, I am thankful for this extra time  since my days are now full managing the little fires with Ian that arise almost hourly.

Though I am trying to enjoy each day and the special time with both kids, I still look forward to the day Ian walks out the door to hop on the bus waiting for him at the end of the driveway. Off he will go, with his backpack on, wearing a big smile on his face while jamming on his iPod to Taylor Swift!  While he may not be able to articulate it. we are both excited for that moment!

When that bus drives off…a celebration with some of my close friends will be in order.  Complete with Mimosas and Bloody Marys! Anyone want to join me?

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We would all love to hear about your challenges during this time.  And any tips of things that worked for you or counsel on how you have adapted and survived, and maybe even thrived in COVID. All ideas are very welcome! We are IN THIS TOGETHER!

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