A Bigger Slice of Time

Time is an interesting thing in that we often have to spend time doing things we don't want to do and not enough time being with those we want to and doing things that are fun or fulfilling.  The pandemic has definitely warped time into really long weeks filled with hyper-productivity.  Seriously, have you evaluated or reflected upon how much you've actually gotten done?  Our pandemic life wasn't all about throwing dog food around the laundry room or spilling food out of the pantry everywhere while our Mom worked, it was a major lesson about slices of time with those we love and occupy time and space with.

Particularly striking was the difference in Alex, and my perspective of him.  Alex would leave early for school, spend all day working hard at things we all might take for granted, then come home.  Alex would blast through the door looking for any available tablet...he would seek multiple tablets.  This was his outlet and reprieve from his day.  He would be loud or quiet, it would all depend upon how much energy his day required.  Sometimes he would be loudly talking or what others might think of as yelling out as he decompressed.  He'd retract and sink into himself, soothing out the day.  Alex wouldn't really want to interact with you much other than wanting you to get his snacks and get out of the way as he flew past you to a room with privacy.  In contrast, when he didn't leave the house for months it was extremely different.  

In the pandemic life, I saw a sensitive, thoughtful, smart, kind and loving person.  I saw the whole person.  I saw Alex's dependency on other people to get things done he wants to do and when you didn't do what he needed or when you had to do something else before you could help him it felt like ignoring his most immediate needs. I found myself saying, "You do it.  I know you can."  I seriously found out during this time that he knows how things work - like the TV Remote - I know you can do it, Alex! Alex would press buttons when he would get impatient with me. I saw his intelligence in a 360 degree view.  He really understands everything going on around him.  He feels everything going on around him.  Like a middle child, he can feel ignored in the hustle and bustle of the house.  Alex hugged me in relief when I just did what he wanted me to do.  He needed breaks from our house.  He'd go to the garage each day and want a drive around the block to get outside and observe the world outside of our house.  The swingset was his favorite place in our yard and he peppered our patio and sometimes the siding of our house with unique chalk drawings.  Using chalk is so soothing to him.  Alex would play YouTube videos in the kitchen and I would question whether he was trying to send me some sort of message because he's non-verbal.  Paraphrasing the videos, they'd be about being not being jealous of a friend who got a puppy, or your annoying brother biting you, or snarky clips from "Garfield".  All of these clips were things you'd just expect from an 11 year old boy!

There was less yelling, less running around, less of an outlet of decompression.  There was more of a window into Alex and who he is.  The bigger slice of time really showed Alex's abilities and brought a more positive focus to light - less of what he can't do, or how different he is and more of him - he's human, he's smart, he's loving, he's complex, he's there, he knows what surround him and that he is loved.  He's like us - he's human but better.  He's better in the sense that his life is fine tuned - he's humble and grateful.  

We can help you

We can help you.

We understand if you don't understand a lot about Autism. We're all continuously learning. We understandable if you don't know a lot about rare disease. We're all continuously learning. We understandable that when you've raised your own children you might think you understand raising three sons. It's understandable to think that one might compare their own experiences and think ours are the same. It's possible that in being helpful someone might think they know what our family needs.

It's very probable though that you might be wrong.

It's not a bad thing to be loved. It's a very good thing. It's not a bad thing for family and friends to invite us to things, or to want to see us. Often times, I am very relieved when you want to come to us instead of us coming to you. I've often told people thank you for forcing us to have you over (LOL). But honestly, it's a relief.

Picture you're a child with Autism or a rare disease. You spend all day "working".  Working hard to comply and behave, working hard to get out of your car and go into school without issue. Listening, trying to communicate, being out in public with people all day long. You're working hard at things people "just do". When you're done working, you want to rest, maybe be alone, maybe do things like run or a preferred activity like watching a show, and you want to do as you choose, and not have a lot of "work" associated with it. You have to work at being brave. You have to work at tolerating things no one should have to tolerate. You comply every week with a treatment that lasts hours. That's your work. Then your parents in their effort to do things want you to go to the grocery store, want you to ride along while we take your brothers to something, or want you to go to a party or event. But, that's not your thing.  You'll have to work at it. It will be work. Now you're working all the time, and it's exhausting.

And the parents are working a lot too - working here, working there, working with you, working out there, all over the place working. Often, to make your thing work we're offered babysitting or time away from our kids.  That's not what we want. It also ignores our basic needs to spend time together, get basic things done without having to work at it and replaces it for where you want us to be. That's great for you but not for us.

We don't want to work hard at living. We just want our downtime to be less work.  Hopefully this helps you understand what happens when you ask us to be somewhere, and why we don't attend much when it requires one of our kids to work really hard. We just want to relax in our downtime and enjoy life with you in it but let's just curtail the work!

XO