14 Reasons Summer Sucks As a Special Needs Mom

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It’s almost June, and most children will be on summer break soon. Time to celebrate, right?

Wrong.

As a Special Needs Parent, I find myself hating summer; the first days 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 full time and don’t have a degree in special education.

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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 risen 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.

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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.

Comments

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  1. Anita@ Losing Austin says

    I never saw it from that side and am glad I have now. My kids are typical, but as a full time working mom I don’t have the summer freedom that comes with summer for so many and can sometimes be a bit bitter towards the people who seem to enjoy it so much. I just end up with guilt.

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    • Kat says

      I’m in exactly the same position as you and, I agree, it sucks. I see Facebook updates from others about what wonderful days they had going to the beach, amusement park, hiking, parks, etc….. and feel huge envy. I do my best with the weekends and try to feel better knowing that my job keeps a roof over our heads and food in the fridge.

      I have great respect for parents with special-needs kids. They have my issues plus ones that I can’t imagine. I will never be one of those people that gives you “looks” in public places.

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      • Laura Rossi says

        Kat: Thank you for saying you will never be the one to give looks or stares as we struggle. I don’t know you but this touched me deeply. Everyone has struggles and thank god we don’t have to perfect and we can say it is hard. Keep on keeping on!

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    • Laura Rossi says

      Thanks for your honest comment Anita. Appreciate your taking the time to write here. I love this community – we are all different but we can relate to one another thanks to Scary Mommy.

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  2. Angela LaRoche says

    In regards to number 14, anyone who has their summer ruined by coming in contact with or observing yours is the source of that problem…not your family.
    Thank you for such a well written, eye opening post. =)

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    • Laura Rossi says

      Angela: I am printing out your comment and keeping in my purse to read and remember when I’m in the midst of a tough moment in public. THANK YOU for making me smile and most of all for reminding me that good people (friends and strangers alike) are silently cheering and supporting me and us. That’s a gift to remember and it’s not easy but your note will help. Cheers!

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  3. Sara says

    Thank you for saying this … the weight of filling the summer is sometimes unbearable. My constant need to explain why we have to have breaks at home, or days where we don’t leave the house, no matter how beautiful it is out, have me on the verge of tears constantly. ~ Peace

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    • Laura Rossi says

      Dearest Sara, Bravo for YOUR honesty and for your putting yourself out here, too. The word unbearable is so relatable. And you are right — it’s hard to have to take those breaks, keep a schedule, and have days where you can’t leave the house. Stay strong. xoxo, Laura

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  4. Betsee says

    Thank God my son M has a “year-round” IEP. His classroom starts back for summer July 2nd! Yes, it’s only 3 days a week, and yes, it’s a shorter time, only 8:45 a.m. to 12:45 p.m., but he regains some schedule. Oh, and I live a couple hours from the beaches of Lake Michigan. Guess who NEVER goes to the beach? We stay home. All the time. It sucks for me and for my other two kids, but I do NOT have the patience to deal with the behavior issues in public anymore. Nor do I have respite care so… We stay home.

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    • LBM says

      We got ESY (extended year services) as well and they’re from 8-12 Tues, wed, thurs starting the 9th and ending the 1st week in August.

      We live near VA beach, but we never go either. We stay home too…all. the. time. But what is worse? Staying home where you can at least have some semblance of normalicy, or sensory overload at the beach and danger at every turn (for us at least….H has a tendency to run first and look later). No respite care here either…..

      This piece is 100% spot on….

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      • Laura Rossi says

        LBM: You are an angel. Thank you so much for saying my piece is spot-on. That means a lot. We all sound like we are dealing with similar situations and I agree that home sometimes is the only solution. My first day of summer break includes scratches, tears, overflowing tiolets, blood, and more “fun” — so home isn’t easy either! Haha! Trying to smile and laugh — who wants a perfect home, child or family anyway right?!! :)

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    • Laura Rossi says

      Hi Betsee: We do get some ESY support but it’s very minimal, too. I love your beach comment — my M has decided he hates the beach now and so I’m at a loss b/c it used to help us with sensory needs (water, sand, etc) and now it’s a fight I can’t face picking with him. We do not have a home program either so like you, it’s all me. Let’s stay strong together!

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  5. Amanda says

    Yes to all of this! My son hasn’t been diagnosed with a special need yet (we’re on the way to a diagnosis), but the lack of structure during the summer is horrible for us and for him. I hate summer break with a passion because of the tantrums that start at 8 am and don’t end until he goes to bed. Forget about taking him anywhere spontaneously, the entire day is ruined because it’s too much for him. Thank you for this post!

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    • Laura Rossi says

      Amanda: I’m not sure how old your son is but know that there are pockets of time that are good, even great, and I totally embrace them. Small miracles I call them. Thanks for sharing your story. We all feel the same way.

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  6. Vickie says

    I have been struggling with my special needs 4 year old since the beginning of June (school let out end of May). The tantrums have intensified and it’s hard to stick to a routine when every day is different. I have dr appts but they’re not everyday, the library has activities thru the summer but again not everyday. I feel bad keeping her in front of the tv, but she’s so quiet and content watching it LOL

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    • Laura Rossi says

      Vicki: do what you can and have to do my friend! We use visual schedules, written schedules, and social stories but school is very different than home so keep it the great Mom-ing! Thanks for sharing your experience here, too.

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  7. Jen says

    I’m so glad I’m not alone in this one. My 8 1/2 year old son is diagnosed with severe Autism. Summers can be rough around here because of the lack of an all-day, filled, routine schedule. Even as a SAHM, whose majors are in teaching (Special Ed birth-5 yes. & Reg Ed K-3rd), it’s hard for me to fill his day. Like your child, he has long days, too, that start at 6:20 a.m. & go until 6 pm. Maybe if he were an only child, but his 5 siblings have needs, too. I love my son but hate the tantrums, fits, etc summer time can bring.
    Lately he has decided to add eloping back in the mix again. He decided to do so this past week while his Dad & a couple neighbor friends were with us out at lunch at the park. Fortunately he decided to play in the muddy volleyball pit rather than try & leave in some stranger’s car. (Eloping is wandering off.) Scarily enough he’s very good at sneaking off. So now he’s back to wearing his harness every time we go out, which brings on more tantrums because he hates not being able to walk unattached.

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    • Laura Rossi says

      Jen: you sound like you have your hands full and are handling a lot. Kudos to you. Tantrums are better than safety right? But balancing special needs and typical children and LIFE isn’t easy livin’ ! Thanks for giving us all some perspective and glad you are using the harness to keep him safe from wandering — that sounds so scary.

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  8. Elizabeth says

    Wonderful take on a not so wonderful experience. I get it and I hope fervently that you find at least some moments of traditional summer fun! My best!

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    • Laura Rossi says

      Hi Elizabeth: We do have fun — dancing, being silly, eating lots of ice cream and watermelon and loving our special family. And sometimes I hide in the bathroom for a few extra minutes of me time or go for a very early morning run! Happy Summer!

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  9. dlt says

    As a working mom, a mom to two special needs kids, one now a young adult, one just entering his teenage years. I have and do walk in your shoes. Angela LaRoche said it in a nutshell. Don’t apologize for ruining other people’s time. Strangers are not someone you will meet again. They are owed no explaintion either. Making your kids life a happy and fun and loved is all you are suppose to do.

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    • Laura Rossi says

      dlt — words to live by “They are owed no explaintion either. Making your kids life a happy and fun and loved is all you are suppose to do.”
      Thanks for taking time to inspire me here.

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