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Laura Rossi Totten

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I Hate Summer!

Posted: 06/20/2012 2:07 pm

Today is the first official day of the summer season, also known as the summer solstice.

As a Special Needs Parent, the first day of summer fills 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 full
-time 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 wreak 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. See you at the beach!

 
 
 

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Today is the first official day of the summer season, also known as the summer solstice. As a Special Needs Parent, the first day of summer fills me with a mixture of terror, guilt and anxiety. F...
Today is the first official day of the summer season, also known as the summer solstice. As a Special Needs Parent, the first day of summer fills me with a mixture of terror, guilt and anxiety. F...
 
 
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09:49 AM on 07/02/2012
Saying Amen, Amen, Amen as I gratefully type from my office, dreading this upcoming holiday week. We were kind of in a summer groove, now comes the holiday and guests to boot. Your comment about wanting to love summer sums it up. Trying not to resent my own loss and remember it's hardest for my son.
10:01 AM on 06/26/2012
Thank you so much! To us, the summer is simply a nightmare. My son is regressing, and my neurotypical daughter has to struggle as well. What you said about balancing the needs of both is spot on, and amplified during the summer months. Summer nearly breaks our family's back every year. I, too, work full-time, and it's been nearly impossible to do any work at all. Thanks for the sanity check.
07:57 AM on 06/26/2012
Thanks for coming out and saying all this. Some of the specifics have changed over the years as my Asperger son has gotten older, but the main difficulties are always there in some form. For me and my family, the school year is tough and full of challenges, but summer is just so much harder.
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BookPRGirl
Laura Rossi Totten
09:56 AM on 06/26/2012
Thanks Diane. I agree. Every day I want to LOVE summer and try to, but it is very hard for all of us -- the children most of all.
12:22 PM on 06/25/2012
Can so relate! Try selling a house and moving this summer, anxiety is in high gear.
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BookPRGirl
Laura Rossi Totten
09:56 AM on 06/26/2012
Eeek! Good luck. You can do it!
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Carol B Liu
Children's writer wearing a lawyer's hat--for now.
07:55 AM on 06/22/2012
Great article on an issue too many are unaware of. Working with parents of kids with special needs, I hear often about the summer transition, and it's a real challenge. Thank you for giving voice to it!
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BookPRGirl
Laura Rossi Totten
01:32 PM on 06/22/2012
Thank you for cheering me on -- this issue needs more discussion don't you think?
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Carol B Liu
Children's writer wearing a lawyer's hat--for now.
01:38 PM on 06/25/2012
Absolutely. I think it has become more acceptable to express frustration and fatigue at times about parenting responsibilities, but it still feels a bit taboo to talk about the same regarding kids with special needs. Which doesn't make sense because the demands can be higher! More articles like yours increase communication and support for parents everywhere.
08:13 PM on 06/21/2012
I can relate, Laura! I'm not a Special Needs parent, but I know how much kids thrive on routine. My daughter loves the adventure and spontaneity of summer break, but my son doesn't do off-schedule very well. You're definitely not alone! :)
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BookPRGirl
Laura Rossi Totten
09:58 AM on 06/26/2012
Thank you. Sharing our stories is powerful and healing and inspiring. It renews my resolve to make it work no matter what!
04:47 PM on 06/20/2012
the sensory overlaid one really resonates with me! I can't stand to be hot so I totally get it!

Also, I don't have a special needs child but I do have a highly sensitive child and she does not transition well so I understand how that can be!!
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BookPRGirl
Laura Rossi Totten
04:58 PM on 06/20/2012
Thank you! We all have challenges in different ways and it's unity like this that reminds me I am not alone! Thanks Caroline.
04:09 PM on 06/20/2012
This is my life! My 9-year-old with Asperger's is already regressing and having major sensory issues. You can't understand this until you live it. 70 days and counting until school starts....
02:40 PM on 06/20/2012
I can totally understand where you are coming from. As a teacher of special needs children, I really understand the need for ritual. Summer throws everything off. Much luck to you as you adventure through the next few months!
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BookPRGirl
Laura Rossi Totten
04:58 PM on 06/20/2012
Thank you! Adventure is a good word to use -- starting immediately to call it that!