Hand to Hold's Official Blog: Written by Parents for Parents

Balancing Summer Activities for Siblings with Different Needs

The Eppele Family

The Eppele Family

If you are a parent like me, summertime brings with it mixed feelings. On one hand, I am so thankful to have the opportunity to spend some “lazy” days with my children enjoying the lack of routine and hurried days, but summer for parents of both typical children and children with special needs can be extremely tough. Finding the time to balance the needs of all of our children during the regular school year is challenging enough, but adding days filled with hours of non-structured time proves to be difficult at best. As most parents of children with such extremely different needs are aware, we lead different types of lives than our neighbors and most of our friends. We parent differently not because we want to, but because we have to.

Our lives are very opposite from our “typical” family friends and even some of the daily tasks that would otherwise be simple, end up being enough to zap our energy for an entire day. Everything we do takes extra planning and even tasks such as a trip to the grocery store or to get ice-cream at the neighborhood parlor has to be timed just right. We plan ahead for everything, decide who will stay at home or take care of our children with special needs if he or she can’t handle the outing, and we do our best to make sure that our “typical” developing children participate in functions and events, while also realizing that at any given moment we might have to cut our activity short.

We worry about our children with special needs, but we worry just as much if not more about our typically developing children. We feel guilty or regret the time that we are not able to spend with them and guilty about the time that we do spend because it never feels like enough. I have lost count of the times I have promised to play with my son, only to find myself having to care for our daughter with CP because her needs are more prominent at that particular time. I regret the times I promised my son I would bake brownies or read stories and have ended up not doing so because my daughter’s feeding lasted for an hour instead of the 30 minutes it should have.

Balancing the needs of both of our children is a problem that most parents in my world face. Time is precious and it always feels like time is being taken away from my typical developing son because the needs of my daughter with disabilities are so great. If we are lucky, we have family and friends who are willing to help. We have many wonderful neighborhood friends and family who stepped in and allowed Cameron to have a place to go to get away from the stress involved with living with a sibling with special needs. We have also been blessed to have many opportunities to spend time with Cameron alone, doing things together that his sister is unable to participate in. These things have made the world of difference in our lives, but I still struggle with days like summer or any kind of extended break from our normal routine to find activities for both of my children to participate in and places that we all can go together.

Most of my “typical” family friends have children who can play together for ample periods of time, children who can have conversations with each other, and children who are capable of keeping each other company during errands or trips. For our family these kinds of luxuries are limited, leaving me caught in a situation where I feel like I am constantly choosing which child will get my attention. I am also not afforded the luxury of spending a short chunk of time with each one of my children engaged in the activities that they each love and enjoy because my daughter requires assistance with every aspect in her life.

So how do you balance the needs of both children during the summer or any other time when routines and structure are more lax and children seem so much more demanding of your time and attention? I asked my fellow “special” mom friends to help me address this problem. While not fail proof, these suggestions will help turn what would otherwise be a very frustrating time into a time filled with wonderful memories and great sibling bonding time.

Summer is filled with plenty of opportunities for our “typical” developing children and our children with special needs alike. Like most families, our therapy schedule continues during the summer months. Our daughter Brooklyn participates in all of the “traditional” therapies, but is also involved in horse and water therapy. These two therapies I consider her recreation, and in summer I liken them to a camp that she would be participating in if she were “typical.” Cameron chooses one or two camps each summer that he would like to participate in as well, and we always try to make sure he has at least one friend participating in each of the camps. During Brooklyn’s traditional therapy appointments, Cameron and I use the time she is in her session to get ice-cream together or walk around the hospital grounds exploring and talking. Every moment that Brooklyn is occupied is an opportunity for me to spend some quality time with Cameron.

Even though routine and structure are hard to maintain during the summer months, I try to create some kind of plan (semi routine) for each week. My goal is to plan one “big” outing per week and many small mini-outings in-between to keep the kids from getting bored. One important tip is to plan activities that encompass the needs of all of your children, taking them to places that stimulate the mental and physical abilities of each child.

Trips to the pool are a must during the summer, and really help to pass the hours in the day. We try to plan trips with friends so that Cameron has kids to play with and I have the help that I need for Brooklyn. Many pools in the Austin area have great pool attractions such as water fountains and beach entry access for the little ones (or the ones with limited abilities). We enjoy visiting pools like these because I can sit in the beach access entry area with Brooklyn enjoying the fountains while Cameron swims in the deeper waters. Two recommendations for the Austin area are Veteran’s Memorial and Brushy Creek Splash Park.

Zoos and aquariums are great ideas for trips that all of our children can participate in. There are some great museums in Austin, Dallas and Houston that are easily accessible and make for a great day or overnight trip.

There are many bounce houses in the Austin area that are great places to meet the needs of all of our children. Rolly Pollies in Bee Caves has open gym times that are great for allowing all children to play. Cameron runs around and plays while I help Brooklyn play. They have lots of great climbing and therapy equipment that can be used during this time. Hoppin House in Lakeway is another one of our favorite places to go. The owner has always been very sensitive to Brooklyn’s needs and has even gone as far as to give us our own bounce house for a short period of time so that Brooklyn and I can bounce without worrying about being trampled or bounced on. Cameron and Brooklyn both love to go here.

Many parents use errands to create simple “field trip” opportunities. One mom I know, Jamie Eppele,  loves taking trips to Target during the day because it “gets everyone out of the house and is social for all three of her boys”. She states that “getting ICEEs are a treat, and that they will walk around looking at and playing with various toys.” This mom finds that if she needs something to do, even a small trip to Target keeps her “typical”developing son going.  She feels that her son is alone with two special needs brothers and that taking small trips like this can help with the loneliness this situation can bring.

There are also many great walking trails around Austin that are accessible for both biking and walking. Cameron loves to ride his bike around the trail at Lady Bird Lake while I push Brooklyn in her stroller. One of my plans this summer is to buy a bike and a trailer that we can place secure Brooklyn’s Tumble Forms Seat in for bike rides together around the neighborhood and other flat surface trails in Austin.

The Barkhizen Siblings

Finding places to go is a bit easier than finding activities at home to keep both kids occupied. In our family, we take lots of walks (in the early morning hours during summer). Dancing, singing, reading books, painting, creating art projects and baking are choices for daily activities that we can do together. Another mom I know, Rebecca Barkhuizen, has “picnics in her backyard, movie days or nights where everyone sits on the floor together, and we go for walks in the neighborhood or in the mall.”

One of our favorite activities during the summer is the Slip and Slide. Cameron runs and slides and we both take turns placing Brooklyn on her back and pulling her legs so she slides down. Brooklyn and Cameron love this and it gets them playing together.

Balancing time between both children is hard, and finding time to spend with both of them together seems like an endless chore, but the end result is priceless. This struggle comes with its fair share of exhaustion, worry and sometimes sadness (when we can’t just pick up and go like many other families we know), but it is also filled with great rewards and more opportunities for our children to enjoy their time together rather than having their time together ruined by the bickering that occurs with many siblings who are lucky enough to have the ability to do anything and everything together, but tire of one another because they are always together.

For all of the parents out there who find themselves asking the question “It’s summer, what do I do now?”, take a deep breath and take it one day at a time.  We are not expected to be perfect, and we certainly are not expected to know all of the answers or to promise that there will not be days where our typical children are feeling like we aren’t spending time with them. This is going to happen, but it happens in families who don’t have children with such extremely different needs. We need to give ourselves a break, give ourselves a pat on the back for making it through each day, and remember that our children have an advantage over children in the “typical” families we know. They will grow up to be helpers; they will be the understanding boyfriends, girlfriends and spouses; and they will grow up knowing not to take anything for granted.

Special thanks to Jamie Eppele and Rebecca Barkhuizen for their contributions to this post.

Laura Romero About Laura Romero

Laura Romero (TX) is the mother of two children, including a daughter who was born at 33 weeks and diagnosed with cerebral palsy at six months of age. She spent a little over a month in the NICU. Laura is a passionate advocate for children with disabilities and for the support of the siblings of these children. She is currently a Family and Sibling Support Navigator and Helping Hand Volunteer Program Coordinator for Hand to Hold, a national NICU family support nonprofit.

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