5 Things I Wish Parents Knew About Respite Caregivers

I have a voice in the special education community that is not heard from as much. That could be for a lot of different reasons, but mostly because respite care looks different for every family.

For the readers who don’t know, respite care is free government-funded childcare for children with an intellectual or developmental disability. My job includes specialized care for children with low-incidence disabilities, basic house cleaning, providing an empathetic ear for stressed-out parents and a being confidant for siblings of a child with a disability. 

• The Mighty’s Caregiving Toolkit

Parents are allotted a certain amount of free childcare hours a month, depending on the disability and other factors. Sometimes respite can happen at a facility such as the Arc or another local non-profit, or it can be an individual provider. Me? I’m a senior in college learning the ropes of special education.

My first job out of high school was as a respite caregiver for twin boys with high-functioning autism, and I immediately got hooked into the special education community. I take my job very seriously. Since then, I’ve worked with more than 75 children with disabilities, ranging in everything from autism, Down syndrome, cerebral palsy, epilepsy, OCD, bipolar disorder, fragile X syndrome and many more. 

I’ve seen families go through extreme hardships, clients gaining communication skills and everything in between. Bruises and tears are regular, but seeing a client hit a milestone makes up for it. My boss put it perfectly the other day; my four-hour shifts are equivalent to an eight-hour shift. I give my 110 percent every day, and I wouldn’t change my job in a heartbeat for a regular “college job.”

With that said, here are five things I wish parents knew about my job:

1. I’m not a babysitter.

This is a big one that always comes up in conversation. I may change diapers, take my clients out on community adventures and administer medicine, but in no way does that make me a babysitter. A babysitter might put on a movie and play with their phone until the parents come home. I do my best to make sure my clients are actively engaged in goals that are supplemental to their IEP or IFSP goals. I’ve taught my clients how to use ASL as a communication tool, how to use the restroom correctly and neatly and how to participate in community events.

2. I may teach, but I’m not a teacher.

A special education teacher works with multiple kids at a time, not just one-on-one. A special education teacher stays after school long after his or her shift is done for IEP meetings to ensure her students are getting the education they deserve. A special education teacher is an advocate outside of the classroom as well, educating the public about eliminating the R-word. But most importantly, a special education teacher works with a broken system and bends the rules as far as they go to get progress due to limited funds. I haven’t earned that privilege of becoming a teacher yet, but I’m working really hard to become one.

3. Your joys are my joys, too.

When your child is sent home from school after having a meltdown, I’m feeling your pain right there with you. When your child communicates his first word, I’m jumping for joy with you. This isn’t just a regular 9-to-5 job for me. I think about your kids all the time, whether or not I’m working that day. I wish the absolute best for you and your family, and I’ll do whatever I can to make your child as successful as possible.

4. I don’t know everything about special education, but I’m learning quickly.

I got thrown into the world of special education at a relatively young age very quickly. There is still a lot I don’t know about special education, such as how to advocate during IEP meetings, how to use “first, then” language when transitioning to new activities and how to de-escalate a meltdown. I’m learning as fast as I can, just as you had to do when you got the diagnosis. Think of respite as a “paid internship.” Teach me the ropes, and I’ll learn with you!

5. Parents: You deserve a break!

I know, one bad respite experience can ruin any chance of asking for help ever again. I’ve heard of so many poor quality respite providers who don’t have the passion, the drive, the energy or the stamina to do this challenging job. But just as the saying goes, it takes a village to raise a child. Let us help you. I get the privilege to go home at the end of an especially hard day — you don’t! The least I can do is let you escape to a movie every once in a while and know your kids are in good hands.