If you are the primary caregiver for an individual with special needs of any type, you are likely mentally and physically exhausted a significant portion of your life.
I don’t think I slept more than 4 hours nightly, in broken segments, when Miss M was a baby and toddler due to her seizures (she had Infantile Spasms) and undiagnosed acid reflux making her miserable. The lack of restful sleep takes a toll on the caregiver! I remember waking up feeling like I immediately needed more sleep, or ingesting heavy amounts of caffeine or sugar to get me through the day. It wasn’t healthy in any way! Although Miss M is 14 and now sleeping better (I’m totally knocking on wood as I type this!), caring for her is a 24-hour-a-day job and is exhausting. Due to her medical needs and her physical size and strength, I am usually fried by the end of the day. I have a bit of guilt in admitting this, as if stating the facts somehow make her seem like a burden, which she is absolutely not! Although I wouldn’t trade her for the world and I believe she was truly meant to be my child, it doesn’t change the fact that our job as caregivers is tiring! It’s okay to admit this and to recognize the fact that we need breaks from caring for our child(ren).
If you are new to parenting and have a young child with Developmental Disabilities or other medically-based special needs, definitely check with your county board of Developmental Disabilities to see if your child/family qualifies to receive any respite services. We have lived in 2 different counties since the birth of Miss M and both offered similar versions of “family resource” funds that *may* be able to be used to give you a parenting break for a bit (this can vary).
I realize this is easier said than done, as getting time to get away is oftentimes difficult or nearly impossible if your child has significant medical conditions. (For the first several years of Miss M’s life, I trusted NO ONE to give her seizure medications but myself, so I understand if you’re reading this thinking ‘but I can’t leave my child!’) A break, even a small one to go to dinner with friends, hit the mall, or read a book in a coffee shop, makes a HUGE positive impact on our emotional health as caregivers. After being nervous the first time of leaving Miss M with a sitter, I quickly realized the benefits to my emotional health outweighed my trepidation.
“You can’t pour from an empty cup.”
If you’re ready for a laid-back weekend getaway, I was amazed to read about the offerings from A Mother’s Rest: Respite Retreats for Parents and Caregivers! This nonprofit organization’s mission is to improve the emotional and physical health of caregivers through affordable and restorative respite opportunities. One of the moms in my 2q support group (Miss M was born with 2q23.1 MDS or MAND), mentioned A Mother’s Rest a few months ago and just recently went on her first respite weekend. They offer retreats across the country and even a cruise, all geared for families with “extra” needs. Not JUST for families with individuals with intellectual or physical disabilities, the organization strives to support families facing injury, trauma, medical crises, abuse, abandonment, neglect, children who have been adopted or been through the foster system, and MORE. They also support special educators and caregivers of disabled SPOUSES, such as wounded veterans and victims of illness and injury.
When I searched their site for respite weekends close to the Midwest where I live, I found several within driving distance at small B&Bs…one offering spa services…AND a cruise to the Bahamas! (Sign me up…. who is going with me?!). It’s important to note that the respite offerings are not free, but rather offered at a reduced rate through corporate and personal sponsors.
Respite retreats are not just for moms! There is a retreat for dads, one for couples, and even a “Mommy & Me” weekend for moms to enjoy time with their ‘typical’ kids. I can’t wait to delve into the retreats and find one to try, hopefully with other moms from my special needs community! A weekend coming up that caught my eye includes caregivers of children with Down syndrome PLUS another diagnosis. Because the Ds community is near and dear to my heart, I was excited to see this!
From their website: A Mother’s Rest is a network of non-profit, respite retreat inns created exclusively to serve mothers & other caregivers of loved ones with disabilities. AMR coordinates affordable, 3-night bed and breakfast respite retreats, providing caregivers with adequate time to decompress in an intimate, therapeutic environment. This extended in-person fellowship with other parents who “get it” simply can not be duplicated in online Facebook groups. As a non profit, we plan these retreats all over the country, year-round. With the help of generous inn discounts, corporate sponsorship, small business support, church and civic group donations, and individual giving, we make these trips affordable to ALL parents.
If you know other organizations offering retreats similar to these, please let me know in the comments below so we can continue to share this info within our communities!
So….who wants to watch my kiddos so I can try one of the respite weekends?! 😉