Wednesday, April 10, 2019

I don't know how you don't. Spending time with Parker.

We are just a couple of days away from what *fingers crossed* will be Parker’s final high school prom. While he technically can attend 2 more, his friends will be too old to go with him and the next 2 years will be Allison’s junior and senior proms. We have worked really hard over the years for Allison to have moments that are just hers, just as Parker has moments that are just his. Our goal is that this is his final prom which was a hard decision because Parker really loves school dances. But we will cross those bridges when we come to them, for now – we are soaking in every amazing minute that is this year’s prom.

For me to really do that though, I need to get past something I’ve been holding onto. (I tend to do that… hold onto things and let them eat at me until I take the time to face them head on or write about them. *My preference is always writing). I didn’t want to hold onto this one, I also never wanted to hear it and I certainly did not want it to cut through me like a warm knife through butter, but it has and it’s time to let it go.

I’ve been told a lot of hurtful things over the years and I’ve overheard even worse. This is pretty common for all special needs parents (and if you wonder why we tend to isolate ourselves and be over the top momma bears… back up a sentence).  While I know this wasn’t intended to be brutal (is it ever?) it absolutely was. I also know it wasn’t meant for my ears but people are not as quiet as they think and, like Parker, I’m always paying attention.

Gah. I just need to spit it out. That’s how much this has bothered me. Not only have I held onto it internally but I’m stalling at even sharing it and my thoughts.

A couple of months ago we had a Rylee night. We had plans to see a show at the comedy club (Heywood Banks) then dinner. Parker looks forward to Rylee time more than anything – even more than Cubs games. Of all of his friends from growing up, Rylee is the one who always makes time. Always. That is what you do for your friends. You make time. Time doesn’t just happen or magically become available – we are all busy. You make time. It is a choice.  Rylee could make time to spend with Parker or she could make time to binge watch Netflix or go on a date with her boyfriend or take a nap or work overtime or go shopping or … I think you get the point. Each is her choice. Each requires her to make a decision on how she spends her time, she chooses to spend time with Parker just as she chooses everything else in her life. It is a choice she makes. She doesn't have more time than you. She simply makes a different choice than you so that she can be there for him.

I’m ahead of myself, I need to slow down and back up.

Our evening out with Rylee went not quite according to plan. Yes, we saw the show at the Jukebox and Heywood Banks was awesome as always. That said, that show ended up sold out, I ended up working through it and I had to move Allison and her friend to another table to make room for a reservation I had overlooked away from Parker and Rylee. So, while the plan was that I would sit with the kids and their friends and watch the show, that totally did not happen but Parker rolled 100% with the changes and loved every minute of the show.

After the show and pictures with Heywood, we went to Steak N Shake – Parker’s choice. When we arrived there was no one else there – thankfully. We were led to our table and Parker buckled. He wasn’t having it. There was no way he was sitting in this location. The waiter told us we could sit literally anywhere we wanted, together or apart, whatever worked for Parker. So, Parker picked a new table and we moved. And Parker buckled again, he didn’t want to sit there either. (Welcome to the world of anxiety.) He wanted back to the original spot so once again, we all moved back. Shortly after the place filled up and our food took forever (truly, over an hour) but once we sat and were situated, everything was fine. We had a good dinner.

On the way home I had to stop for gas. It was convenient because Parker also needed to go to the bathroom. No problem. I took him in with me planning for a quick in and out to use the bathroom and pay for gas and go. Only after Parker went to the bathroom – he wasn’t leaving the gas station. He wandered every aisle as they were minutes from closing. Absolutely not leaving. My phone was in the car so I couldn’t even call for help. After I knew there was no way for me to get him out of the gas station (even with every single thing I bribed him with) I was able to make my way past Parker (who would kick me anytime I tried to go by him) to the counter and asked the 2nd person there to please go to my car and ask Rylee to come inside. They happily did so. Rylee came in and I went to hide out of sight. Within a minute, Parker and Rylee were happily walking to the car, I followed, and the ride home was uneventful.

So, while it wasn’t our best evening, it wasn’t our worst and, hands down, Rylee was the reason we survived it.

So… what was it about that night that bothered me?

It was this…. At one point during the evening, someone said something to Rylee that I just can’t shake. They said to her, regarding her spending time with Parker, “I don’t know how you do it.”

Rylee was caught off guard and honestly, I don’t think before that she ever put much thought into “how she does it” because she simply just does it. Or, it could be she has been told that before a time or two or ten over the many years she has been friends with Parker and already knew the answer. She shrugged it off with something like, “I just do, he is my best friend.”

I don’t know that it bothered her or that she thought about it, we never discussed it but it cut me to my core. It was one of those reminders that my son is different. That for some he isn’t just a friend you go to hang out with because you enjoy his company. That for some, you go because you feel obligated or you go because he asked or I asked and you felt like you had to.

I cannot even begin to explain how much it hurts to even just type that. I've heard this a million times as a special needs mom but never in reference to being someone's friend. That stung.

My sweet guy is going to be 20 next month. His entire life I have advocated for him. His entire life I have taught people how to be his friend (let that soak in for a second). I have encouraged people to spend time with him and promised them they would be better for it. And they are. He has always been surrounded by people who love him and a good size group of friends who I am pretty certain simply enjoy being with him. But this was a reminder that not everything is how I choose to see it and, that hurts me in the moment and crushes me for the future.

From 2nd grade on (and even recently in a blog), I have repeatedly talked about the importance of friendship – to everyone. That everyone includes my son and every person living with a disability. It isn’t just in school; it is after school and throughout life, too. You don’t just stop wanting to have friends when you graduate high school. You don’t stop wishing your friends would come to hang out with you after you no longer see each other daily. Friendship is something everyone needs throughout their entire life. Not just you. Not just my son. Literally every single person.

I won’t say being friends with Parker is easy. He is very, very limited verbally. He will likely drop to the floor or go to the other room when you arrive until he is past the anxiety. He functions at a level significantly lower than his peers. He still loves Paw Patrol, he loves the “Don’t Step In It” poop game, he can’t talk politics or current events with you (although he can tell you almost any sports score)… he lives with significant challenges. That is his life. It isn’t going to change. It is his life. If it isn’t yours, count your damn blessings. Really, right frickin now. Count them.

Can you go to the store without being overcome with anxiety? Can you go to college? Can you get a job? Can you drive a car? Can you eat more than 5 or 6 foods? Can you call your friends and talk endlessly? Can you text more than the words “Yes” an “Ok”? Can you go see your friends whenever you choose? Can you say your friends would do the same? COUNT THEM. EVERY SINGLE ONE OF THEM. Not everyone has those blessings in life. They don’t. So stop taking them for granted. But more so – stop looking at people who DO take the time to include individuals with challenges into their lives and as their friends as though they have taken on some extreme challenge that would kill you. They haven’t. They have just made different choices that make a huge difference to the people they make time for.

People make choices every day. This isn’t limited to Parker’s peers. I see people daily – of every age - who make it a priority in their life to spend time with people with disabilities. Not because they have to but because they want to. They want to get to know these amazing people for who they are. They want to see them happy, hear them laugh, and encourage them to do more. They do this after work in the evenings, on weekends or during holidays. I’m sure people look at them as they do Rylee and think “I don’t know how you do it.”

Let me share a secret with you, I don’t know how you don’t.

I don’t know how you don’t make other people a priority in your life. I don’t know how you don’t make time to do something good for someone else. I don’t know how you don’t make the choice to include people who are different than you, especially when you have known them the majority of your life.

I get it. He’s my son. I'm prejudiced. I think he’s pretty awesome to hang out with, he makes me laugh, he makes me want to be better to learn more to do more to be more. But I get it. I’m his mom. I’m sure I am supposed to feel this way (although believe me when I say I’ve met parent’s who don’t). But I don’t understand the “I don’t know how you do it” mentality over spending time with another – incredibly good – human.

So, this weekend, when I flood your newsfeeds with prom pictures – do not, not even for one-second look at Rylee and think “I don’t know how you do it.” Instead, stop and look at yourself and ask yourself why you don’t.

Life is about choices. We all make them every day. You can choose to see the good in others and you can choose to spend time with them. Or you can choose not to. But when you chose not to and question how others do… they are not the ones missing out on life, experiences, or friendships… you are.

No matter your age, stop and think about who you know whose day would be completely made if you decided to take the time to visit with them. I can tell you that for Parker’s entire life, his day will ALWAYS be made when the people he knows, respects, and loves take the time to spend with him.

Stop wondering how someone else “does it” and just do it, then you’ll understand.

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