Thursday, September 6, 2018

Who knew?

You should know that I have made a huge discovery. I actually can't believe that it hasn't been uncovered sooner. Shocked that no one has ever written about it.

Are you ready?

When people say, "Oh of course, that is just Murphy's law." You know that saying right? You wash your car and it rains? You don't wear make-up to the grocery store and see fifteen people you haven't seen in months? You leave your snow gear in your home state of Minnesota and travel to the usually-warm Louisiana for a ballgame and it snows? (Ok, you might need to be a Mississippi State bulldog fan to understand that one!)

Well, clearly, I mean CLEARLY, Murphy is a special needs mama. And I had no idea.

I made a last-minute house-hunting trip to Delaware this week.  Benjamin has been doing so well in the dorm, and I had coverage for Cate (Thanks to sister Claire and dear friend Suzy!), so we bought a flight and I flew up to attempt to suppress the panic we are feeling that our housing options aren't going as we hoped. I was gone 54 hours. Just.

The day before I left, my phone blew up with hurricane warnings. I was notified by the National Weather Service, each of my children's schools, and our electricity provider. One by one they wanted to ensure I took precautionary measures for food and shelter.

Oh yes, sure I did, I just bought a plane ticket and now won't be able to sleep at all for worrying I won't be able to get home to my children in a hurricane. I wasn't going to be defeated by Gordon (the hurricane) or Murphy (the law) though -- I tracked that blasted hurricane all night before getting on a flight hours before it made landfall, hoping and praying that it had in fact weakened.

I had barely landed when a personal care attendant reported car trouble. I took a deep breath and began to brainstorm solutions -- thankfully his car cranked as I brainstormed. Crisis averted.

But I will tell you, my first thought before I could even THINK of a solution was "Of course there is car trouble, I have left town. Murphy's law." Sigh.

But whew, that had an easy solution and as I gave thanks for this amazing team of personal care attendants, and continued giving thanks for a less-severe-Gordon than they planned for, I felt this strange sense of awe that things are really running pretty smoothly in my absence.  I wasn't proud but maybe just maybe a smidge sure of myself in regard to the way we have navigated Benjamin's move to the dorm.. But JUST a smidge.

And let me assure you that it's a good thing it wasn't more than that. A really good thing.

Because by the next day -- day two of my days away, hour 28 maybe -- Benjamin called and the first words out of his mouth were:

"Mom, I am in my dorm room and I am ok."

And I braced myself.

"But Mom, a tree has fallen on campus and taken all of the electricity with it."

Of course it did. Of course. I left town. A hurricane hits. A tree is downed. Power is out. Blast it, Murphy. Blast it.

We scrambled a bit. We discussed options. We waited an hour to see if power might be quickly restored. But in the end, his PCA drove him to our home where his sisters were staying the night. Those three had some sushi and family time and all was well.

But the best part of the story occurred today when I returned from house-hunting and went straight to Benjamin's campus (he had an appointment that I needed to be at too.). He began to recount the story of being in the dorm and the power going out. He told me about wanting to send his attendant to check out the rest of campus but then realized the locks on the doors for both the building and the apartments inside are ID badge swipe-activated. He said he knew they required electricity. He walked me through his solution.

"Mom, I know I am just not great at handling these crises."

What, are you kidding me? I asked him if he had been listening to himself talk -- did he hear that he had thought through the potential problems of being in an apartment alone when the other roommates and his attendant might be locked out due to the power-outage? Did he hear the solution he came up with? Did he realize how calm he was when he called me?

And let's be real, having the presence of mind to start with "I'm ok" was pure genius when talking to your mother!

OH my Benjamin, I think you are really pretty great at handling crises. And though I know I have little power to change Murphy's Law, tonight I am confident that you will be able to handle whatever ole' Murphy throws your way!

And son, I will always be in your corner.



Carol - The Blessings Counter

Thursday, August 30, 2018

Writing with a gentle grasp....

I'm not a hundred percent certain I want to type yet. I don't want to disrupt the flow, or ask for trouble, or jinx anything, not anything at all.

And it is not that I am superstitious. I'm not. But I do know that pride can be the downfall of many a successful plan. Oh, I don't want to appear proud.

But I want to praise. I want to give praise. I want to shout my praise.

Benjamin has been on campus since Sunday and four nights in, all is well. Maybe not yet terrific. But minus a couple of hurdles, he is making it and even enjoying some of the late evening campus activities that he has never been able to participate in before....

There was a time when I would proudly proclaim my opinions to anyone who would listen -- part of the college experience is living on campus. I was adamant that a huge part of the education college kids receive happens in the dormitories as they learn to navigate the differences of the students all around them.

I lived in university housing at Mississippi State University for three years and deeply regret I didn't continue on campus for my fourth year. I had the privilege of working as a resident assistant for one of those years.

When Wade went to medical school, we worked as resident heads (dorm parents) for an undergrad dorm at the University of Chicago. The triplets were literally born into campus housing life. We ate meals with our students in the hall cafeteria. I clipped little chairs to the big circular table and our earliest family meals included three teeny tiny babies and a table full of brilliant college kids.

So, I am not kidding when I say I LOVE on-campus housing.

But a few years ago, I realized I should turn my opinion-volume to low. I should stop proclaiming how integral ON campus living was to the college experience because frankly I didn't think it could happen for Benjamin.

Mason has been on campus all four years -- as a matter of fact he is serving as an RA in his dorm for the third year in a row.

Claire has been on campus -- this year she is technically across the street from campus in an apartment, but it is still university-owned housing.

But Benjamin lived at home for the first three years. His freshman year, we didn't have a choice. The existing men's dorm was not accessible and he didn't have a staff of personal care attendants yet. Home was his only option. And really, being on campus and navigating classes, buildings, etc was a huge change for him. It was ok that he came home at night.

By sophomore year, we were so proud of the system that we didn't hesitate to continue doing what we had already done the year before -- except now, with some help from personal care attendants.

By junior year, we knew the new apartment had an accessible room but neither of us were too eager to discuss it. Dad however, began to talk about the opportunity to try independent living on campus. Dad began to plant the seed in both our minds.

And so, we jumped the hoops, made the calls, did all the leg work -- and met some amazing people along the way -- and this year, Benjamin is living on campus. He had an elevator snafu his full day living there and injured his foot painfully. But he kept going. He has been to several events on campus. He has learned to navigate for meals, for studies, and to all his classes. And he has faithfully called to let me know he is ok.

As for me, I am sleeping for the first time in 21 years in my bed without hearing him breathe over the intercom system he uses at home to communicate with me from bed. Rest assured I am still listening. But I can not hear him from here. I fret about his hair looking good. And I worry that no one is checking his posture in his wheelchair. I worry about this and that and the other and really just need to lay down my need to be the only one who can get his care right. It isn't true.

We are four days in. And I must say, I am hopeful for tomorrow.

Image may contain: Benjamin Shrader, sitting and indoor



Carol - The Blessings Counter

Monday, August 20, 2018

Thank you, Mrs. Ernestine.

My first word of advice when parents ask me about college choice is always -- always -- look more at the heart of the school than at the architecture.

My trio all chose old, well-established universities. They all chose schools that were built before the Americans with Disabilities Act (ADA), and small enough liberal arts colleges that big overhauls have not been made in accessibility.

Loudly, I want to proclaim that overhauls are necessary on all three campuses. There are things that need to be done -- physically, and policy-wise to make those campuses more accessible. Period. (And rest assured, all three are doing what they can to get awareness raised on their respective campuses.)

But today, I was reminded of just how right I am when I say the heart of the campus is the biggest thing. The very biggest thing.

Almost four years ago now, Mason and I visited Millsaps College for a Welcome Weekend event. He went to his information sessions and I went to the parent sessions. In one session, the speaker introduced himself with a myriad of titles but one -- Accessibility Director -- caught my attention. I sought this administrator out following the session to introduce myself. I told him about Mason and what he needed to be successful in college. I asked if Millsaps could provide these things. He assured me they could as we walked across the campus. When we ran into Mason, I was thrilled to introduce the two of them. And then promptly realized how different college-life would be, when the director looked Mason in the eye and asked:

"Mason, I know what your mother thinks you need to be successful in college. What do you think you need?"

It won't surprise you to know that Mason's list was only a fraction as long as mine had been.

That was the day Mason took ownership of his college career -- months before he actually moved onto campus.

Today, I was at Millsaps for the semester ritual of Mom and son going together to purchase his textbooks -- for our next to last time. My mother-heart was happy enough watching the mini-reunions with everyone we ran into in that bookstore. As he begins his senior year, it is so clear that Mason has  a community.

After paying for his books, I started making my way out of the student center only to be stopped by one of the custodial staff, Mrs. Ernestine. "Are you his Mother?" she asked, nodding her head towards Mason. I smiled and said that yes, I am. 

She returned my smile, "Everybody on this campus loves your boy," she said. "You don't have to worry about him. We are all looking out for him."

I thanked her -- and tried not to cry. She went on, "Come here. Look over there. He is surrounded by his friends. I told you everybody loves him. Now you go on and don't worry."

Mrs. Ernestine is part of the heart of that campus.

Last week, Mason called concerned about some construction fencing that was blocking his accessible path for his scooter. I urged him to stop by and talk to the head of security, a college friend of his dad's, John Conway.

Mason called me back in minutes. "Mom, Mr. Conway is already on it. He has a plan and has instructed the construction team to move the fencing to make a path for me. I didn't even need to ask for it."

John Conway is part of the heart of that campus.

Benjamin has similar stories with a dear lady, Mrs. Elle, on his campus. Mrs. Elle has stopped me on numerous occasions to assure me she can get the doors for Benjamin and I should go on. She worries about him when he doesn't stop for lunch and she is always there with a hug when I am on campus. Mrs. Elle works in multiple buildings on Belhaven's campus but she always seeks out Benjamin to say hello. She is part of the heart of that campus.

I talked to my girl today, too. Goodness, she doesn't need the accessibility, and yet she actively fights for it for those that do. I told her about my conversation with Mrs. Ernestine and she laughed and told me that she was walking to campus for the first time from her just-off-the-edge-of-campus-apartment and one of the security officers saw her and offered her a ride in his golf cart today. We laughed that even she is well taken care of on campus.

As my trio begin their senior year of college (SENIOR YEAR!!!), I have learned so much about college choices, campus accessibility, and the ability of my children to overcome and persevere. I am not going to sugar-coat it and pretend that all of it has been rosy. And I am keeping notes in an effort to help those who come behind us.

But we were spot on when we said the heart of these three schools was exactly what we were looking for.

Mrs. Ernestine was a perfect reminder.



Carol - The Blessings Counter