It’s late June, and most children are on summer break now. Time to celebrate, right?
As a Special Needs Parent, the first days of summer fill me with a mixture of terror, guilt and anxiety.
For the record, I used to love summer — no schedule, vacation, spontaneous outings, beach days, ice cream, long days and even longer play dates.
Now, I find myself wishing away the entire season.
Special Needs Parenting is challenging 365 days of the year. Unlike the shorter winter break or spring vacation, summer is unique because it is long and most special needs children now expect the routine, support, predictability and familiarity of the school year. Frequently, school-age special needs children struggle with the concept of time and that contributes to the confusion and anxiety many children experience during these three months.
In a word, summer is anything but easy living for us.
And so, here are the reasons I hate the lazy, hazy, crazy days of summer:
1. Transition — Summer marks the biggest transition for my son and therefore, my family. School is predictable and his expert team deftly supports our son M so that he can be his very best.
2. Structure-less — Compared to school days, summer days have almost no structure. Of course, we have a schedule and we mimic what works during the school year, but it isn’t the same thing and no matter how hard I try I’m not Mr. J or Miss K.
3. No Schedules — During the school year, M has a very specific daily schedule. His day starts early (6:00 am) and ends late (6:00 pm). Filling 12 hours isn’t easy when you work fulltime and don’t have a degree in special education.
4. New Everything — Camps, summer school, tutors and lessons all mean new teachers, staff and childcare for our kids. Not to mention new and unfamiliar experiences and venues. For parents it means giving crash courses to all these folks in order to make them experts in our son M.
5. Social Skills — The built-in opportunity to mix and mingle with different children five days per week disappears. In addition, regular schedules for karate and other lessons turn to summer schedules and these offerings can be too much or too little.
6. Regression — The sun has just rose on Day 1 of Summer and already the sneaky, silent tentacles of regression are pulling at M. He wants TV all the time, he’s throwing tantrums again, he is having meltdowns and it’s only 7:00 am.
7. Lack of Resources — Summer means the daily support M needs disappears and the pressure to channel the expertise of professions (including his teacher, his O.T., his P.T., his social skills coach) fall to the parents.
8. Guilt – Whether you are a working parent or stay – at- home parent, the guilt about keeping your child happy and progressing can be crippling in the summer.
9. Unpredictability — From fireworks to thunderstorms to oppressive heat and humidity, almost everything about summer can be unpredictable and often frightening for special needs children (especially young kids).
10. Sensory Overload — Sand, sunscreen, traveling, melting ice cream, condensation on water bottles, crowds, screaming babies, sunburn — need I say more?
11. Sleep Changes — It’s tough to stick to the same early to bed and early to rise sleep schedule during the summer. This is impactful for typical children but for sensory children and special needs children, it means the day starts with a deficit that will impact everything.
12. Spontaneity — The secret summer lover in me loves the spontaneous and unpredictability of summer. I love nothing more than grabbing a pizza for dinner on the beach or going to a last-minute BBQ. But the special needs parent knows that change isn’t a word or concept easily embraced by our children.
13. Sibling Battles — We have twins but whether it is a twin or a brother or sister, siblings have to compromise and adjust to one another during the summer often on a daily basis. In a special needs family, the battles are that much worse and balancing the needs of the typical children is as important as meeting the needs of the special needs child. It is a lot of pressure and there isn’t a manual to guide use.
14. Stares, Pointing, and Worse — You’ve seen me and my family and my son on your vacation or in town. We are the ones with our 9-year-old on the beach or at the ice cream shop. He might be throwing a tantrum because his cone is melting or because he thought we were leaving the beach at an exact time and we are late. Please don’t judge us! We don’t mean to wreck your summer — we are counting down the days until school reopens…
Of course, many parents of typical children also look at summer with some trepidation. But usually a few ice cones with rainbow sprinkles, movie nights, extended curfews and trips to the beach and they are humming “Summertime.”
As for us, at least we can eat ice cream for breakfast, watermelon for dinner and dance to our own summer theme song.