Becoming, Finding and Appreciating Caregivers

If you thought the autism world wasn’t stressful and complicated enough, just throw in the obstacle of caregiving. They say it takes a village to raise a child, but what does it take to raise a child with autism for their lifetime? It takes caregivers. 

I thought I would take some time to write about the many obstacles of not only being a caregiver to your child, but also the never-ending battle of finding a caregiver that is compassionate, experienced, qualified and that sticks around. 

Let me first back up and say I am not talking about babysitters; I am talking about someone to care for and protect your loved one. My adult son with severe autism, OCD and seizure disorder not only needed caregivers to bridge gaps while we worked, but—as a family—we needed caregivers to provide us respite and to care for Dylan when we couldn’t.

Sometimes it was for a date night, to go to mass, attend a school function for our daughter Anderson or simply to go to the grocery store. Other days, it was just to survive another day.

Caregiving is a very challenging career that doesn’t necessarily provide the highest pay. I have so much respect and actual admiration for caregivers. (And believe me, I have met them all.) The ones that you know right away you can’t live without; the ones that are brand new but you know they have what it takes; the ones that show up and you can see the fear; the ones that don’t care; the ones that you know will quit on day 2; the ones that have compassion and empathy…and the ones that just don’t.  

We have had caregivers show up for work high, with an attitude, defeated and downright mean, but we’ve also had caregivers show up and take over for me when I couldn’t give one more minute to Dylan because I had nothing left to give. Caregivers have become my friends, sometimes even more like family than some actual family. They have also broken my heart when they quit. I have poured everything into certain caregivers foolishly thinking I could “buy” or “bribe” them to stay only to learn that it doesn't work.

I have had caregivers poached by other families in this tight-knit community. I never wrote about that until now because that wound was deep, fresh and almost took me down. It involved so many people that I honestly thought cared about me and more importantly cared about Dylan, but does it make me bitter to realize that people only care about their own agenda? It’s a hard truth, and I’m always reminding myself that not everyone has your heart.

I have literally co-signed and even purchased cars for caregivers, given them crazy amounts of money and supplemented what they made to keep them. I have learned (the hard way) that they don’t stay no matter what I do. People come in and out of your life and that’s just life, right? 

I think that it is really hard to understand the panic of finding someone that you can trust with your child, especially when that child doesn’t have the language skills to express things to you.  Some of the most amazing caregivers I ever had were young girls in high school and college that “grew up” with Dylan. They went on to become nurses, NPs, psychologists and successful professionals. They were young and vibrant and they treated Dylan as if he had no diagnoses and they loved him. It was that simple! Even on his hardest days, they loved him.  

I have had caregivers tell me off in my own home, tell me I’m a terrible mother, selfish, careless and even that they should turn me in to children services. (This was for an incident where Dylan fell down the steps when he was under her care, by the way.)

I have been told I care more about my career than my children, that I’m so self centered for going on a date with my husband every Saturday night and I’ve been made to feel guilty since Dylan has moved out for going on vacation for a week. No one gets my constant worry. They don’t know that my vacations aren’t the vacations they think because of my guilt and stress. It is pretty hard to truly unwind and enjoy vacation.  It is as if I shouldn’t get to have vacations because I have a child with autism; as if I am held to different standards and judged by so many.  

I share all of these hard truths and stories only for awareness, acceptance and empathy. However, I love to end on a positive note because there is always a lesson and there is always a reason to be thankful.  

Today, I have a thankful heart for those caregivers that love my son every day. Currently (and it can change tomorrow), we have an amazing group of all male caregivers that work at Dylan’s. They show up, they give it their all, they love Dylan and they take my place. I try to do all the little things to show them how much it means and I try to do the big things without getting carried away because I don’t know their journey: Is Dylan just a stop along the way? Is he a forever destination? I know—and I hope they know—that my Dylan loves deeply like his Momma. He thinks of them as his friends, his family.  He wants to be treated just like them and hang out with them. He wants to feel that he isn’t just a paycheck, but a human. 

I will forever thank all of the caregivers—the ones we loved, lost, taught, cherished and forgave. It’s often a thankless job and it’s a job I did and will do for a lifetime. I’m grateful, thankful and blessed to have known every one of them. 

“The closest thing to being cared for is to care for someone else.”

Carson Mcmullers