Summer is here, embrace it!


For each of us, summer can be a fun-filled sun-drenched dream, or it can be a free-fall into endless days without structure, causing us to already begin counting the days to school resumes.  With some planning and forethought, it can be a good time for all!  While most families can be free and whimsical, we often feel tied to the continuous work of therapies and an ESY program that may seem to barely know what I.E.P. stands for.  The summer slide takes on a different meaning for our kids who have big goals, so let’s mix our work with play!  Here are a few ideas:

Get on the road and seek adventure!  With some pre-planning and extra packing of clothes, essentials, snacks, videos and music, your child with Rett syndrome can enjoy outings to the park, zoo, lake, mall, pool, museum, library, beach, sports field, movie theater and more! 

 

Recognize that many of our girls won’t enjoy a frantic pace, which means neither will you, so go easy on yourself.  Plan just one thing each day, or even one per week, to a place that you, she and her siblings will all enjoy.   

 

Think through the day and incorporate some “therapy” into the adventure.  Don’t let yourself think of it as work!  Suntan lotion, splash zones, and cooling towels are sensory fun for everyone. 

 

Swimming, bike riding on a summer evening, and chasing a soccer ball down a field in a wheelchair can count as PT.

 

Mix up your eating and nutrition goals by slowing down the pace, setting up backyard picnics, trying some new recipes.  Summer is a great time to challenge new textures and foods with lots of fresh fruit and vegetable varieties, whether orally or blended for a g-tube.  Stroll around farmers markets and let her touch, feel, smell and taste.  Let her pick a new item for the family menu!

 

Summer is also a great time to test out new caregivers.  Have someone come to your home while you’re there so that you can be caught up on housekeeping and paperwork.  Take them with you on adventures so you have extra eyes and hands so you can be free to play with your other children, or just close your eyes or read a book. It’s your summer too, recharge!  Hopefully, during the summer you can find someone you trust to do more caregiving so that you can have a much deserved respite. 

 

Remember at all times that it may be tough for her to regulate her body temperature or take shade breaks on her own. Lather on the sunscreen, rig up misters and cooling towels for the car seat and strollers, pack up sunshades of all types, and hit the road.

 

Don’t get bogged down in what you “think” summertime should be all about, and frustrated that yours is not “all that”.  Instead, celebrate what you and she can do.  It will leave you feeling refreshed and proud of the goals you accomplished! 

 

Secret to summer success:  planning with a lot of liberty to accommodate the unexpected!

 

Enjoy your summer, stay tuned-in to Rettsyndrome.org for more fun and enjoyable tips, and don’t be afraid to let your foot off the gas pedal just a bit.  We’ll all get busy again in the Fall with fundraising, IEP goals, and hopefully some new treatment trials that are in the works!   And feel secure that all of us at Rettsyndrome.org won’t slow down at all this summer, so you can!