I vote for Benjamin.

Just last week I had the privilege of standing with Wade and my friend, Carrie, the social worker for his Cerebral Palsy team, virtually as we recorded a talk on Caregiver Stress for the upcoming American Academy of Cerebral Palsy and Developmental Medicine Meeting.

(Never mind that this meeting was to be held in New Orleans and Wade and I had been planning for years the fun restaurants we intended to take the team to...but alas Covid means the entire thing will be virtual.)

My point is not to grieve a trip to the Crescent City (though I am grieving), my point is that the information on the unique stress for caregivers is fresh on mind. The data, the statistics, the tools for working through and around it. Fresh. On. My. Mind.

Carrie does a beautiful job explaining how in parents of children with special healthcare needs, the baseline mental health level is one of stress. And while I have struggled for years to accept these words, to own them for myself, I think it is important that I say: The baseline level of stress in our home is a high baseline. High.

This does not mean that joy is not pervasive. Oh goodness, we have so much joy. This does not mean that our family doesn't know how to have fun. Do I need to post some Mickey-Mouse-Ear-Clad-Shraders to remind you of the before-Covid times and the fun this family has together?

But the bottom line is that when your baseline is already high, any added stressor can make life feel catastrophic. For example, a tornado ripping through your yard might cause you to be completely stressed out and overwhelmed. A pandemic that kills hundreds of thousands stresses every one out admittedly but for the family with special healthcare needs already, the stress can paralyze.

I am not saying all of this because I need your pity. I do need your awareness. I have threatened to make t-shirts.

All of the data, statistics, coping skills are fresh on my mind. But yesterday, we hit a snag with Benjamin's care team. The details are not important except to say that this is hard. Trusting someone else with your child's care is hard....even when child is a grown adult.  Having care providers in your home several hours a day, often with nothing to do but analyze every move you make is hard. Making sure the young adult who has never done his day to day care himself knows how to articulate his needs is hard.  

And yesterday I forgot all the coping skills as all the hard spilled out of my eyes. And when I had dried them off, when I had received comforting texts from Philly (my Claire), South Carolina, and Mississippi (Thanks, Tupelo Girls!), and when I was ready to go forth again, the hard spilled out once more. And so I pounded out a run on the treadmill, hoping that would be the thing, but the hard spilled out again. And when I cleaned my face and got my shower and dressed to take my favorite 14-year-old to get her ears pierced (Again. You will have to see the PowerPoint Presentation involved in convincing us to do this!), and my new friend said she had heard it was a rough day, stupid hard spilled out of my eyes again.

And then young adult -- who is not stupid and not the reason for my tears -- felt like he was in fact the reason for my tears. And so we talked and discussed and brainstormed. He too feels the absolute weight of trusting people who aren't always trustworthy, of course he does. Of course he feels it more than I can even imagine. He feels the weight of having to count on people who don't always fully embrace the role he needs them to embrace, who can't understand that there is more to this job than simply serving him meals.

I got a call today asking for a reference for a former care attendant during our time in Mississippi. I may have been a smidge over-exuberant as I recalled how this attendant could think for herself in times of crisis, how she had initiative to go the extra mile, to do the task I had not yet realized needed doing, to brainstorm for the most effective manner of providing Benjamin's care. Oh how I miss our Mississippi team. 

But today, I got to serve as Benjamin's attendant as he worked for his Senate candidate during the Delaware primary election. That he was incredible is not a surprise to me. But listening to him as he talked to voters, I was once again reminded of all of his gifts. Benjamin's worth is not limited to his motor skills. His worth is not dependent on an attendant. 

Benjamin is an intelligent thinker, an avid researcher, an articulate speaker, and a charismatic communicator. I watched voter after voter stop and just listen to him today. I watched voter after voter return to the parking lot after casting their vote and thank him for the education he offered. I watched as voter after voter assured him they had in fact voted for Jessica.

After a hard, challenging yesterday I am so thankful that today reminded me of why we fight for Benjamin's rights, why we fight to hire the right team, and why we fight to ensure he gets to chase his dreams.

I don't know how his candidate will fare across the state -- she is the underdog for sure. But I do know that I will cast my vote for Benjamin all day long in the race against all the hard things this life has to offer. 

And any other race he chooses to run.

Real Super Heroes: Personal Care Attendants!

Benjamin was 15 the first time we hired a personal care attendant to assist in his daily living routine. Our dear Zack had no prior experience with such a position and of course, we didn't have any experience with the position either. 

The whole thing was such a learning curve for both of us. Zack was a rock star though. A few years older than the triplets, he treated them with respect, and even as we were easing him in to the daily care (trust me, the easing was for my sake....I had the hardest time letting go of my daily routine!), we all jumped in to a friendship with this amazing guy that makes us miss him like crazy every day. I will forever be grateful to him for setting the bar high in what to expect and truly holding our hand through the learning process.

Visiting with Zack on a visit to AZ a couple of years ago!

Since moving from Arizona, graduating high school, and desiring and requiring more independence from me, Benjamin has needed a team of personal care attendants.

We looked long and hard for that team for a while and I won't lie, we hired some that in hindsight we can see clearly desperation had colored our discernment skills! But ultimately, the team we assembled were some of the most amazing young adults I have ever met. They were going to college full-time and working around Benjamin's schedule to also be his PCAs.

Isabella traveled with us -- giving up some of her off-time to help Benjamin volunteer and reach his dreams. Christian planned taco nights weekly during his shift -- a shift he maintained even after he graduated and got a full-time job! Kaitlyn conscientiously did Benjamin's typing -- never acting impatient with his creative process and helping him accomplish all his goals! Dillon was his friend before he was his PCA, so Benjamin enjoyed having him assist on campus. Jadee took time to help Cate with softball pitches -- over and above her position with Benjamin. Terez had been his classroom "secretary" before becoming his PCA and between she and Mary, I knew I could call on them to run to his dorm on campus with any emergency! Nakembe walked with us as we figured out the dorm process for the first time -- his quiet confidence giving us the confidence to move forward. And Luther never failed to walk in convincing Benjamin and us that there was no where he would rather be. Honestly, this team. There aren't enough words to praise them.

Benjamin and his amazing team -- who all showed up to support
 him during the senior reading of his script.

Today, post-college graduation and move to Delaware, Benjamin's PCAs are provided through an agency. Well-trained women who already know the ropes of the job. We have an amazing weekday morning attendant, and although she is new, a great afternoon attendant. But our evenings haven't worked too well, and only recently have we had a weekend attendant.

But what we are finding is that even with trained-professionals there can still be a steep learning curve. I vacillate on whether or not I am assuming too much knowledge, or patronizing by trying to teach skills they have known for years. Finding the balance is hard.  And so as the weekend provided another new attendant, I have been pondering what things are my must-knows....and missing our amazing AZ and MS peeps...

So far my list is fairly short though infinitely important:

1. Keep Benjamin safe. Really -- this is your #1 job. Do not act like you know how to work the lift if you don't. Bravado is not called for. If you don't know how to safely care for him -- ask me. Do not try to fake it.

2. Respect Benjamin. Do not speak to him as if he is a child. He is not. He is bright and articulate and no offense, but he can probably write circles around you, show him that respect. Talk to him. You will learn he is a brilliant conversationalist.

3. Do not laugh at him -- or me. Ok. I get that maybe this is a nervous thing but man it is awkward. You need to either stop it or get in front of it and explain it because when he asks for help and you laugh, he is not inclined to ever ask again.

4. Those amazing young adults who have worked for B for years can tell you that I am a crazy woman about presentation...when Benjamin rolls into a room, all eyes turn to him. He better look his best!! Fix his shirt so that it is neatly tucked in, collar correct, sleeves buttoned. Do not put the seat belt around him with shirt shoved down under it. Make it neat. Pull his pants' legs down so that they look like they would if he were standing. Do not strap his feet straps ON TOP of his pants. That looks terrible. Fix his hair. I am happy to teach you how to do it -- he has great hair. Don't give him a slicked down comb over. No food on his shirt. And for Pete's sake, no food on his face! Wipe down his chair, I don't want food there either. Goodness, use your eyes to see if he looks like you would like to look when going out in public.

Whoops. I think I might overwhelm with number 4. But honestly, I think those things are important and set a good attendant apart from a great one.

Benjamin's personal care attendants change the world -- not just for him, but for me. We are better, stronger, safer, with the right team in place. And though my number 4 is long, I know that number 1 is far more important. (I really do.) But that doesn't mean I won't be here harping about tucked in shirts.....

Working at Camp Shrader. Or you know, how to hire the best Personal Care Attendant!

I was a camp counselor during my college years. Besides considering those some of my best summers ever, I also know that it was in the those summers that I grew up, that I learned what it means to available 24 hours a day for someone -- or in the case of camp, 14 someones!

I developed a rather quick reputation during camp orientation for being the one who asked all the questions. I wasn't sure what to expect and really wanted to be prepared for anything and everything. And it was a good thing I did -- because every crazy scenario I had come up with to ask about during that training, pretty much happened to me my first week of camp! Oh my! I learned how to do tasks that it would never (and I mean never ever) have occurred to me to do for someone -- and smile about it. I learned to face flat-out hard issues and love my girls through. I learned that if woken in the middle of the night, I had a soft, calm voice apparently -- who knew! I learned how to get up close and personal with complete strangers and serve them for a full week.

Sigh. I love camp.

We are almost a year into the tenure of hiring a team of personal care attendants for Benjamin. We had a team of three for many months and recently added a couple new members. I am fairly certain that it is safe to say these last 10 months have been quite a learning curve for our team, for Benjamin, and perhaps most of all, for me the mom.

I expect a lot.

And yes, those of you who know me in real life are nodding your heads as this is a general description of my personality. My expectations are always -- regardless of whether we are talking about vacations, friends, work, whatever -- super high. Always.

And so, going in to what this new team would mean for Benjamin was no different. I expected a lot.

If I am honest, I expected the team to fall in love with us like I fell in love with 14 campers every single week of summer for years. I expected relationships to be forged and frankly, I expected a delight in caring for my son (Ok, so this one seems a bit rose-colored-glasses I know, but Benjamin is an amazing young man!). You know, I expected camp in my house. Every day.

Really. Is that too much?

There are so many problems with this approach. The obvious being that I am fairly certain not one of the team members was expecting camp. Oh.

We were a few months in when my feelings were hurt because an attendant canceled their work day from the calendar with too little notice for a replacement. My wise-much-less-emotional-husband reminded me that this was a job to our team and that I needed to treat it as a job as well. Ugh.

To be fair -- and by fair I mean I am totally defending myself here -- Benjamin's personal care attendants are in our home for most of their work shift, every single day. We eat our meals together often. We watch tv together often. We spend a lot of time together.

So here is what I am saying -- the role of personal care attendant is much like the role of camp counselor. You are up close and personal with your employer -- in our case Benjamin -- and the relationship that develops DOES in fact require you to cross over the lines from work-focused employee to work-focused caregiver. I love that word.

Caregiver. A personal care attendant's role is far more than employee-employer -- it is some one who gives CARE, who helps Benjamin through the everyday living skills required to reach his goals and dreams. And when you care, you don't let him go out in public with food on his clothes, or a dirty wheelchair. As a caregiver, you make sure he is hydrated. You check for pressure sores.

And as the name implies -- you care.

One of our team members has served as Benjamin's scribe all year. She barely gets in the door before he has laid out the plan for their day ahead. He dictates, she types and that has allowed him to write some amazing pieces this year! (Sorry. Rose-colored glasses again.)

One of our new team members shows up for work every day and immediately starts talking with Benjamin. If you know my son in real life, you know that he loves to talk. They are engaged in conversation from the time she walks in the door. 

They both show they care.

My expectations are still high. I recognize that. But when you are trusting the care of your child -- and let's face it, no matter his age, he will always be my child -- with someone (or in our case a team of someones) I think high expectations are imperative. I believe this team can rise to the challenges for the job, I believe they CAN eagerly provide the care Benjamin requires and I am determined to make it feel like camp around here!

S'mores anyone?