When did you first realize you were not just a parent, but also a caregiver?
For most parents, children become more independent as they grow, and parents can reclaim bits of their freedom. But for parents of a child with a disability, independence looks very different and does not have a predictable timetable. Parents realize that they often have less free time as their child ages because structured programming, school, and therapies which occupy so much time (and relief for parents) end at age 22.
Special Needs parents provide support and care far beyond what they anticipated, and often with more complexity as time goes on, not less. Caregiving is forever. The roles of parenting and caregiving become very blurred because the blend is what they have always known. It’s important for parents to acknowledge the extra demands parents face for several reasons. By acknowledging these demands, we can give ourselves permission for respite, identify the right outside caregivers, reduce burnout, and recharge our batteries.
Beyond the Basics of Parenting
Here are a few great examples of the additional and complicated efforts a caregiver must undertake, execute and monitor that is beyond the basics of parenting:
“Parents take their kids to soccer practice and drink coffee on the sidelines. Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet with the people running the program, go over accommodations needed, and are on high alert monitoring their loved one, often jumping in to help.
Parents see their child gain more and more independence with each passing year. Caregivers see their child move closer to the edge of the transition cliff. From early intervention, to preschool, to grade school, it is hard. The tween and teen years hit, after school programs are no longer offered, and most students are able to go home solo. There are no supports. Adaptations and modifications are few and far between.
If caregivers want their child to do something with their friends or peers, they must do the work. Even for something as simple and seemingly inclusive as a non-competitive swim team, caregivers have to contact the organization, ask for modifications and adaptations, and if they get the go-ahead, the caregiver must find support staff and likely pay for it too. Caregivers are forced to either find a caregiver or be the caregiver. Equity and inclusion for our most vulnerable children is not a given. It is something we must advocate for, fight for, create, and often pay for.” (Erin Croyle, “Caregiving and Parenting are Not the Same” November 22, 2019)
Sound familiar? While we do all of this and more for our child, it can take a toll. We don’t complain because, well, it just feels wrong to complain about caring for someone you love so deeply and who needs you so much. However, it is essential that we find respite for ourselves, even small amounts, to maintain good health and reduce burnout.
Help and Hope is on the Way!
Respite can come in many different forms and blocks of time: self-care, exercising, quiet walks, time with friends, short weekends away, friends and family watching your loved one for short periods of time, hiring outside caregivers, using an out-of-home drop off program, outsourcing other household tasks (like house cleaners, lawn care) that others can perform, or attending support groups.
More formal respite programs and services are also available, and we’ve gathered and listed several below. Many of these organizations provide vouchers and financial support for caregivers of your choosing. The key is to start creating respite opportunities for yourself, no matter how small, and build them into your schedule as you become more comfortable.
While we may never completely eliminate caregiver stress and exhaustion, the good news is that we can take deliberate steps to carve out time for rest in whatever form helps you, in whatever quantity available. You can do it!
Respite Resources
- The Illinois Respite Coalition offers services, vouchers, referrals and support. https://www.illinoisrespitecoalition.org/home.html
- Jewish Child and Family Services (JCFS) provides support and short-term relief for families caring for children with disabilities and special needs. https://www.jcfs.org/find-help/disabilities-services/respite
- Little Friends of Naperville, Illinois offers an on-site weekly, free program for children 3-17 and their siblings. https://www.littlefriendsinc.org/children/respite-family-services/
- Good Shepherd Center of Hazel Crest, Illinois, provides In-Home Respite and an extensive referral list. https://www.gscenter.org/programs/respite-services/
- The Department of Human Services offers In-Home and Residential Respite services for children and adults. https://www.dhs.state.il.us/page.aspx?item=139146
- The Division of Rehabilitation Services offers Home Services and Respite. https://www.dhs.state.il.us/page.aspx?item=29736
** Please let us know about other respite services so we may share with our families by sending us a note through our firm’s contact link.
