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.....