Special Needs Parenting

Respite Retreats for Parents and Caregivers

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?! 😉

xo, Sarah

It took 14 years, but
I was able to get a vacation
last Fall and
enjoyed every second!
Special Needs Parenting

Easy Beach Vacation Spots for People with Special Needs/Developmental Disabilities

Spring has sprung in the Midwest (finally!) and Summer will be here shortly, prompting us to think seriously on how we will fill the warm days and nights of summer break from school. For those of us with kids with developmental disabilities, we exert a significant amount of energy into planning! (Anyone else get exhausted with the mere thought of planning.so.much?!) Therapy, camps, appointments, & summer school classes if you’re lucky enough to receive services year round (!) all play a role in breaks from the routine of school.

My daughter, Miss M, is 14 and for the first 9 years of her life, we really didn’t know how to travel with her. Between medical concerns (she has seizures in heat and also low muscle tone, causing her to not have enough stamina to walk normal distances), behavioral issues and just the change in routine, we were fearful that any vacation would be too much effort and too stressful on her, so we didn’t attempt it. Something changed as her needs became more predictable to us, we felt ready to try it and hit the ‘abort mission’ button if it didn’t go well!

We live in Ohio, so for our first trial run, we went to St. Joseph, Michigan because it was a short drive and family had visited previously and said great things about it! Part of my planning was literally figuring out where the closest hospital was and how it was rated, in case Miss M had a seizure and we needed help! #nervousmom Our 3 night stay ended up being wonderful, although traveling with a picky 3 year old who refused to eat anything other than yogurt was a true joy (Miss M’s little bro, Mr.D was the culprit!). St. Joe is a LOW KEY (read: easy for a kid who can get overstimulated!) town on the West coast of Michigan with the gorgeous Silver Beach and Lake Michigan as its draw. The sand is clean and white, restrooms are easy to walk to, there is a ‘sand’ wheelchair for use (only one), handicapped accessible parking right next to the beach (with a pass you pay for), and a concession stand where all my kiddies enjoyed snacks. Miss M is a movement sensory-seeker, so swings directly on the beach are a huge plus for our family. The downside is that Silver Beach doesn’t have any handicapped accessible mats going from the parking lot to the beach, so in our case it took Miss M awhile to walk in the sand because that is difficult for individuals with low muscle tone. St. Joe is an adorable little town with friendly Midwestern folks, cute shops and eateries, a lighthouse with boardwalk, a carousel on the beach (seriously!), world famous Silver Beach Pizza and attractions like sand dunes really close by (Warren Sand Dunes: gorgeous dunes, park, restrooms, access to the lake). St. Joe worked out well for our family with younger kids, but if you have teenagers who are looking for more things to do, it may not keep them occupied for a week.

We decided to expand our family vacation to the ocean a few years ago when we felt brave in traveling a further distance from home with Miss M and our boys were getting older and easier to travel with too (read: my picky eater was eating better!), so after researching (of course, we research for F.U.N, right?!) we tried out Hilton Head Island, SC.

We were ELATED to see that the beach we were staying close by had HANDICAPPED ACCESSIBLE mats! Wahoooo! It felt like we won the lottery being able to use Miss M’s Convaid Cruiser to get her from the parking lot to the ocean. This is a huge deal for anyone looking for a family vacation if you have a family member in a wheelchair or with mobility issues. The coolest part for me, besides watching Miss M’s enjoyment of course, was seeing ALL the other FAMILIES with individuals with disabilities, enjoying themselves. (Honestly – when as a group do we get to watch other families like ours having FUN?!) I may have gotten a little teary-eyed at the whole scene, as it felt very inclusive to us! HHI is a very family-oriented atmosphere with amazing restaurants, entertainment and shopping. Miss M can make noises that typical people aren’t used to, yet we never feel uncomfortable when we travel to Hilton Head (you allllll know the stares I’m referring to, right!?). Everywhere we went with Miss M in her stroller, we could easily navigate, which is important for us. VRBO makes it super easy to search for handicapped accessible rentals, if this is needed. HHI also has its own hospital, which takes a weight off my mind when we travel there. I suggest if you’re planning a family vacation with a person who has a difficult time waiting in line, just be aware that restaurants are extremely busy at typical dinner hours, so try to go early or make reservations. This piece takes a bit of planning but is very much worth it, to have a more optimal experience without meltdowns! Our favorite on the island is The Salty Dog Cafe, as you can eat outside under umbrellas and see the harbor (they have a QUICK dining option here), and One Hot Mamas for their AMAZING, melt-in-your-mouth BBQ. If you have a water-lover, check out the water fountains in Coligny Plaza (Miss M gives them 2 thumbs WAY up) and for swinging, we recommend the bench swings also in Coligny – because you can get ice cream WHILE you swing, so how much more perfect can that get?! HHI also has horse stables, the usual mini golf and arcade options, an amazing outlet mall just north of the island and multiple areas where kids can swing/play on playgrounds. Now that we have it “down” and know what to do and where to go (meaning: mom doesn’t have to plan so much), it has become our family favorite for a vacation spot!

Dining at One Hot Mamas on HHI

Wherever you decide to travel, it’s important to consider the following items when traveling with your child with special needs:

  • Accommodations: Does your child have mobility issues that need to be accounted for? Behavioral issues that mean he/she needs a quiet place to rest or a noisy room by a pool? Sensory issues impacting the environment where he/she can be content? Think about what makes your kiddo happiest at home and then try to find a rental to meet these needs.
  • Traveling to your destination: If you are traveling by car, how can you make this easy for your child? We map out our stops and have DVDs lined up with snacks to tide everyone over in between stops. Are you traveling by air and does your child need a social story or preparation to assist in this? Many airports offer programs to assist with those who need a ‘trial’ run to be prepared. How can you make this easy on yourself AND your kiddo when getting from point a to point b (other than wine for you..hehe)?
  • Medical concerns: Where is the nearest urgent care center/hospital? Do you need medication refills? Where is a pharmacy? Make sure to put doctor’s phone numbers in your contacts on your phone. If traveling by car, consider having a list of medications, doctor’s names and emergency contact information in case a first responder would need this information for your child.
  • Supplies: If you’re like us, Miss M travels with a LOT of extras – from special ointments we have to use daily to extra clothes and socks for under her orthotics and everything in between, she has her own suitcase (or 3 !) for all of her needs. Make sure you make a list of what you use on a typical day with your child so you don’t forget anything you might not be able to buy in your destination.
  • Food Issues: If your child has allergies/intolerances/preferences, see what grocery stores are local to your destination if you can buy specific products when you get there. We plan on using the Kroger Clicklist this year on Hilton Head for consistency. The year that Mr. D would only eat one variety of Organic yogurt, I packed a cooler with 3 gigantic tubs to take with me, in addition to paper products and disposable spoons and napkins. (That was suuuuuper fun traveling everywhere with our cooler that week, ha!)
  • Itinerary: What would vacation be without a fun list of things to do and see? Making this list and researching while you’re at home will take the pressure off of you while you’re away, especially if you have to plan for accommodations for your kiddo’s needs.
Enjoying the sunset on an accessible path overlooking the marshes

Being flexible isn’t necessarily my forte – that’s putting it lightly – because I am by nature an organizer and planner. I want everyone to have the optimal amount of fun on vacation because we only take one a year and it isn’t the easiest to get away! But, when on vacation, I remember this:

If the plan doesn’t work, change the plan!

Looking for something more exotic than Michigan or South Carolina as your family beach vacation? Please go and then report back to me how it all worked out so we can try it too! We are hoping to take the family truckster out West on a tour of national parks in a few summers….definitely NOT ready for this until we get seizures under control though. (Individuals with disabilities can get a free national park pass for their CARLOAD!)

Did you know that there are resorts in Jamaica that cater towards families with special needs or cruises just for families touched by Autism? Not ready for Jamaica but looking for other fun places like amusement parks catering to your needs? Erika at Family Vacation Critic has compiled a fantastic list of options that you can see here.

Here’s an excerpt from Erika’s post: The Tradewinds Island Resort in St. Pete Beach, Florida, is CARD certified (Center for Autism and Related Disabilities), which means its staff is prepared to assist families with special needs. “Upon check-in, I asked about the amenities available to us and was told about the ‘Safety Kits’ — corner cushions, door alarms, outlet covers and more,” says Carrie McLaren, whose daughter has Down Syndrome. “They also had a great Social Book that we were able to download from their site before our arrival, letting Molly know what to expect during our stay. It was comforting to her, but also to me as a parent.”

Please share with me in the comments below where you have traveled with your child with developmental disabilities or other special needs and how it worked for YOUR family. We can all learn from each other!

xo, Sarah