After a tough day watching Ian, Connor, Ian’s high school personal care assistant (PCA), had this conversation with his mother:
Connor: (frustrated sigh) Sometimes Ian isn’t a very good listener, and it’s really frustrating. When he doesn’t listen, and I say the same thing over and over…I want to scream at him, but I know I can’t.
His Mom: Having kids can be very frustrating. I imagine having a kid with special needs has even more challenges and frustrations. This is the exact reason why kids shouldn’t be having kids and a good reason to use birth control—every time. And just think…you’re only spending a few hours with him, and not even every day.
Connor: Uh yeah. I know. I don’t know how Chad and Lisa do it. Sometimes when he’s having a bad day, the two hours I am with him seems like forever.
His Mom: I bet it does. Something to remember, when you choose to have sex, you’re raising your hand and saying, “Today, I’m ready to be a dad,” and there is no guarantee what that child will be like. Chad and Lisa certainly didn’t plan on having a child with special needs. It’s challenging for them, and they’re ADULTS! And once you’re a parent, you’re a parent every day, 24 hours a day.
We have employed more than fifteen PCAs, over the past nine years. Each and every one of them has greatly impacted our lives and has given us new insights into Ian. I can only hope they have learned as much from us, as we from them. And with Connor, we know he learned more than he expected about the challenges of parenthood–and a child with special needs.
Whether the caregiver is someone already in our lives, or new to us, deeper relationships emerged than I ever expected. This makes sense, considering many are in our house up to 20 hours a week, and some even join our vacations. It is as if we gain another son or daughter in our family, who become connected with Ian, and with us. We have been there to hold their hands, wipe their tears, or simply listen to the challenges in their lives. We do our best to support them, when we know they need it most.
The flip side of having long-term caregivers is that this kind of relationship can be overwhelming at times, especially when we are already tapped out parenting Ian. Despite this truth, I would never trade these special bonds for anything. Emmie, one of Ian’s very first caregivers, texted me this week: “I’m very proud of my time with Ian and your family. You all shaped me to be who I am today, and I owe a lot of my personal successes to it…he will always be my buddy, and you guys will always be my family.” Emmie has a special place in my heart, as she was with us in Florida, the last time I saw my father before he passed. These wonderful memories with my parents will always be cherished, with Emmie alongside us.
The first few years of his life, the only way we felt comfortable enough to leave Ian was to place him in the hands of family. Chad and I were lucky to have both grandparents willing and able to care for Grace and Ian. We even had the chance to travel, just the two of us. Looking back, I am thankful for the special connections they created during these occasions, while we enjoyed much needed respite.
Despite the efforts of family, we always need more than just a handful of hours, or a few days vacation to succeed in our careers, manage the household, and actually be sane parents on a daily basis. We are fortunate to have a supportive social worker who helps us navigate both the county and our state systems. After mounds of required paperwork and visits with nurses to determine the level of care Ian needs, they authorize weekly hours for our PCAs. This time is logged and paid through an agency who employs our caregivers.
The task of actually finding someone–the right someone–to work with Ian is yet another process that takes much time and energy. I post ads at local colleges, ask family and friends, and utilize companies like Care.com. I am always seeking an individual who will love Ian, and have enough patience, day in and day out, to have fun with him, while putting up with his shenanigans. After many Care.com messages, emails, phone calls, in-person interviews, and ‘Ian-meet-and-greets’, we secure someone who we hope will stick around for at least a year. Ian needs that consistency, and to be honest, if I need to hire and train my sixteenth caregiver, I am bound to lose it!
The first day our new hire arrives, ‘Ian Boot Camp’ commences. I am always worried that if I don’t explain EVERYTHING, Ian will outwit the newbie and do something crazy. Even at a young age, he was smart enough to take advantage of a caregiver very quickly. He has been known to lure the PCA into his room, and then proceed to lock him/her in. Turns out, almost every one of them has been locked in Ian’s room at some point. Thankfully, they all came back the next day ready to try again – after they figured out how to escape his room.
For many years I was essentially ‘training new hires on the fly,’ and most likely overwhelming them, while I talked a mile a minute. I finally realized it would be much easier to create The Ian Manual. Typed up, easy to edit, and ready to share. This document, seemingly simple at first, turned into our official employee manual for working with Ian. This guide includes, but certainly is not limited to: house rules, reward chart procedures, meltdown protocols, food options, and tips for decreasing cat harassment. It has proven to be an invaluable reference guide for our PCAs.
This all works great for in-home care, but attending summer camps, after school programs or school sports is another story. Most typical kids simply show up and are adequately supervised by the staff. By contrast, Ian needs one-on-one supervision in these settings, much like during his school day. In this situation, the PCA’s role is more of an observer and facilitator, as the main goal is for Ian to learn appropriate socialization. So, it’s back to the drawing board to create yet another set of instructions for extracurricular programs, and an accompanying reward chart to keep him on track.
These ‘operating instructions’ for Ian can be daunting, so the trick is to make sure that the potential new hire, after reading the detailed documents, still wants to work with him. Some may think that it is easier to be the CEO of a company, rather than work with Ian. Luckily, we have had many amazing people who were ready and willing to step up – some even for several years – before moving on. A few of our past caregivers, like Connor, went on to join the armed forces. So, if I am smart, when I am seeking another PCA, I may ask one of these highly trained soldiers to return to duty at the Witt House. Surely, after military boot camp, they may be better suited to be one step ahead of our 14-year-old mastermind, and perhaps even be able to escape Ian’s room unscathed.
♥ ♥ ♥
Just days after Ian was born, I vividly recall a conversation with my long-time friend and special education director, Jenny. The advice she gave that day was pivotal in my approach to parenting Ian. “Be sure to take breaks often, because parenting Ian will be harder, and will last longer, than any other kind of parenting.” Thinking of her sentiments daily, I give myself permission to accept help, and take time for myself, without guilt. Thank you Jenny.
No words will ever be able to express my gratitude to Ian’s grandparents, and to all of our PCAs, past and present, who love Ian unconditionally.
I would love to hear your funny or challenging caregiver/babysitter stories.
Comment below or email me if you would like to be private: firstname.lastname@example.org