Hating Summer as a Special Needs Mom

97 Comments

-1

It’s late June, and most children are on summer break now.   Time to celebrate, right?

Wrong.

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.

Comments

  1. 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.

    • 2

      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.

      • 3

        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!

    • 4

      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.

  2. 5

    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. =)

    • 6

      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!

  3. 7

    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

    • 8

      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

  4. 9

    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.

    • 10

      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….

      • 11

        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?!! :)

    • 12

      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!

  5. 13

    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!

    • 14

      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.

  6. 15

    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

    • 16

      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.

  7. 17

    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.

    • 18

      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.

    • 20

      Laura Rossi says

      Hi Teresa: I’m delighted to be called “eloquent” — thank you! Glad you stopped by. Laura

  8. 21

    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!

    • 22

      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!

  9. 23

    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.

    • 24

      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.

  10. 25

    Sophie says

    Very valid post. I work with kids with special needs in a school setting and see the look of fear in parents faces the last day of school. I also mourn the ending of the school year as I wonder how much the student will have regressed over the summer and what skills will we need to relearn come September. I do find it curious that you address your son’s special needs before you address him….. I have always been an advocate of “people first language” and believe that we are all people first… I am a person with some anxiety issues (rather than I’m an anxious person), your son has autism (rather than your autistic son)… Yes having special needs makes him who he is, but it’s not all he is… Special needs or not I’m sure rainbow sprinkled ice cream would be his favourite ice cream…. Best of luck to you and your family over the summer!

    • 26

      Becky Gaines says

      I am sure the blog author is too polite to say this, so I will… posts with this kind of passive-aggressive tone are not helpful. Parents of children with special needs are the ones who know better than anyone else that the special needs do not define the totality of their child. I understand your advocacy of this issue but it would be better directed towards those who are less intimately involved with special needs. Parents need support and encouragement, not evaluation and judgment.

      Laura, thanks for having the courage to post this blog, and I wish for many happy moments in your summer.

      • 27

        Laura Rossi says

        Becky: you are a kind and brave person. Thanks for taking on the “ouch” factor. You are right in knowing that OF COURSE my son is my son — a unique and special boy first and foremost. But unless folks are parents of a special needs child they will not fully understand our experiences from the first -person perspective. Bravo!

      • 28

        Sophie says

        Thank you Becky for so graciously putting me in my place. I was by no means “evaluating or judging” I was stating my opinion. Of course Laura sees “her son as her son”…. but if parents of kids with special needs don’t address them as person first why should anyone else see them as anything but an autistic kid? I am merely focused on the way he is being addressed. I do nothing but support and advocate for families, not just at my job but personal life as well. I got caught up on the wording rather than focus on what is really being said.

    • 29

      Laura Rossi says

      Sophie: Nice to have a special needs professional weigh in. Of course, this post is about summer and special needs and so I am not getting into the nuances of my child or his whole self but rather dealing with the unique challenges parents face during summer when oftentimes the only part of the child they can see is the needs b/c their child is struggling and not happy. I wish you a happy summer too.

  11. 30

    Anastasia @ eco-babyz says

    Although I don’t have a special needs child and can’t fathom how hard that is, my second – a 19 month old boy is so hard-headed and unpredictable that I find myself enjoying staying home most to avoid the stares when he throws a toddler tantrum in public! I can only imagine how tough that would be with an older child. We get invited to so many parties, barbecues, etc, and I just don’t want to go anywhere more than once a week. We’re taking a family vacation in July, I wonder how that will go!? Thankfully it’s just a 2 hour car ride and we’ll be in our own cottage rental the whole week where we can hide from strangers’ stares if the beach gets to be too much for him.

    Can’t help but notice that this article made me think of another I read yesterday written by a mom of a special needs child: http://bit.ly/1bECvQ6

    • 31

      Jessica says

      Anatasia,

      I can completely relate to just wanting to stay indoors and hide from the masses. I have a 4 1/2 year old and an 18 month old who are renowned for their meltdowns. They have their struggles with language and routine which contributes to their frustrations. Even though my son is 4 1/2, this is the first summer where I’ve actually forced myself to get out and about. I’ve had so much fear for so long about what other people will think as they see me struggling with my kiddos and if I’ll have the strength and cool head to just stick it out. It’s not easy and I find myself excited on days where the weather is bad enough that I have a good excuse for not braving an expedition, but I’ve also noticed that the more I get out, the more confidence I have. Yes, there are epic meltdowns, but if I just focus on the kiddos and surviving that moment, I realize it’s not as bad as I might think. Plus, the more bad moments you survive, the better you get at handling them and you start to build up your confidence.

      Hang in there. I can’t say it will get “easier”, but you’ll get better. :)

      • 32

        Laura Rossi says

        Jessica: it’s great that you shared your experiences here for all of us esp Anastasia. Knowing we are not alone is so important. You are right about building our own confidence up and knowing that we can survive a tough moment as Moms and that the next one may be better. LOVE the concept of us getting better and stronger as Moms b/c our children are so sensitive that they pick up on our energy and nuances. I’m going to remember this and try to take on new challenges (one every day this summer). Bravo Mrs Brave!

    • 33

      Laura Rossi says

      Anastasia–sounds like you are doing a great job b/c you are doing your very best. The gift of parenting changing all the time helps many tough situations and so hopefully this summer will have bright spots for you. I find that even parents of typical children can learn from special needs parents — things are less difficult but can be very similar to our kids’ issues so I hope my post empowers you! Good luck with the 2 hour car ride — the cottage will be a safe haven and special for your family I’m sure. Thx for writing.

  12. 34

    jasbeeray says

    I always thought that all children look forward to summer break. This is the first for me. I totally understand.with the structured-less and no schedule problem. Things sometimes gets all tipsy turvy with my kids because they are creature of habits and must have certain amount of ‘sameness’ or connection to what they had been doing during school days.

    • 35

      Laura Rossi says

      Jasbeeray: I thought the same thing until I entered the special needs world. Thanks for trying to understand this and also appreciate the fact that sometimes we take things for granted but others can’t. We do manage to have fun and lots of ice cream and watermelon here though!

  13. 36

    Kathy Radigan says

    Thank you for this!! You are right, summer can be a challenge for so many families, but for a special needs families everything is intensified. My daughter’s program starts in another week, so far our first week was not so bad, but it’s not easy. We just can pack up and go to the beach, or a movie. And, we are dealing with behaviors that can really get 20 times worse when the schedules that are so helpful to so many special needs kids are changed. I also so relate to feeling like the odd family when on vacation. It’s so nice to know we are not alone! Thanks for this post, and for all the great comments it inspired! Great post!!

    • 37

      Laura Rossi says

      Kathy: I love all the comments too. Everyone here has spoken honestly and share so much. It’s brought tears to my eyes. I am going to be really mindful of other families when we travel and go on vacation even more — a knowing look and supportive smile go a long way and it’s a small thing we can all do that has huge impace. Happy Summer. Thanks for telling me you liked the post. It’s such an honor to be on Scary Mommy.

  14. 38

    Brenda Dion says

    Wow. Your succinct description really said it all! I think all parents can “relate” to the unstructured days and new experiences of summer but you made me see if from a whole new perspective. I get it. Hopefully you can find a way to be a little more lazy and not as crazy this summer.

    • 39

      Laura Rossi says

      Brenda: I’m also going to make this my summer motto “little more lazy and not as crazy” — that’s inspiring. I’m glad I have given you a window into a different parenting experience. I think when we can really relate to others, we can really support each other in a deeper way. Happy summer to you!

  15. 40

    sharon stewart says

    How very very glum this picture is, lifes what you make it , special needs or not,everything mentioned above can be overcome,I don’t hate summer at all, I don’t believe its that much different for all parents , there will be parents loving the freedom of it all, and those longing for school to begin again so it’s less work, nothing really to do with whether their child is typical, or special or whatever,I am a special needs mum, and have a son who isn’t special needs aswell,they both enjoy summer because as a family we’ve always made it a time to celebrate, just relax and go with the flow time, clearly more effort is required and priorities re examined here.

    • 41

      Sally says

      Problem is, Sharon, we would LOVE to “go with the flow”. My autistic son doesn’t understand, no matter how I put it. Maybe with you having 2 kids it’s easier. From what I can tell it seems as though the author has 4 and might just have a bigger plate. Don’t judge. Don’t be that mom that makes other moms feel bad. Your special needs child might be very different from her child.

    • 42

      Laura Rossi says

      Sharon: Sally is right — we can’t all go with the flow. I live thinking the glass is half full and parenting is a gift BUT I wanted to shout out the truth about summer and special needs families in this post. It was hard to write, raw and honest and daring for me. But true and honest and real. If you saw our situation you would not be so quick to judge and I hope you will remember this is a community of imperfect parents telling their truth and cheering one another on and saying it’s ok and safe to let it all out. This post is in keeping with Jill’s spirit and message. Thanks for taking time to comment though.

      • 43

        sharon Stewart says

        Hi, I wasn’t judging anyone,I just commented because I got such a glum message reading this, that just says basically how awful and life changingly difficult it is to have a special needs child,that even summer’s all but ruined .The whole thing clubs special needs parents into one pile and of course all special needs children and their needs are different just like typical kids, it would be awful for a pregnant mother expecting a special needs child to read how negative it CAN be, with no mention how wonderful it can also be. For me ( and I guess I’m obviously a bit odd here) the worse bit about having a special needs child is all the health care professionals telling me what my 7 year old son can and can’t do, will and won’t ever do, and what feels like a hundred billion checkups a year.He has overcome so much and mostly with very little possitive input from therapists, I think maybe things might be slightly different here in the uk and our system may not be as good as in usa.Yes my son can be a challenge in any situation,and because of that I stopped working and we made huge life changes to accomadate that,it does make it easier being able to have a life whilst he is as school but also look forward to when he’s home.We incorporate all his little quirks into our “normal” routine and maybe I don’t notice them as much,I also had a special needs sister whom sadly passed away aged 26 so I grew up in the 70′s with all the negative out look families had towards their child back then, so maybe I developed a thick skin to the stares and any nagative opinions.I don’t want anyone to think that my life is rosie times can be very hard,I have terrible early onset arthritis in both hips and one knee making it difficult and painful to walk, and a heart condition.The only thing keeping me awake at night it not being here to enjoy summmer with my kids,I guess I’m just thankful my son’s not in hospital or worse,and that I’m here with him to enjoy another summer with both my sons.Don’t think I don’t understand other parents point of view though,I guess everyones outlook is individal, I hope you all have a great summer.

        • 44

          Laura Rossi says

          Thanks for clarifying and wishing you a great summer too! We are all doing our best and that unites us. Thanks again, Sharon.

  16. 45

    Samantha says

    I totally understand! I have an 8 yr old daughter with Down syndrome and she LOVES school. But she thrives on routine. I am a stay at home mom and I also watch my 2 nephews and 1 niece all age 4. So things get pretty hectic. I try to plan fun and educational activities but Fl. weather and child meltdowns can make it difficult. So I am in complete agreement with you, I love summer and would love to enjoy it with my “monkeys” but I do crave the structure and help of school and teachers and therapists.

    • 46

      Laura Rossi says

      Samantha: Wow you are amazing. Those children are lucky to have you — I’m sure you are loving and calm even when it is hectic. I try to use all the tips teachers and therapists give us at home and shower my son with love and then the rest I have to just deal with right?! Haha. Stay cool.

  17. 47

    sharon stewart says

    I just think it sounds a bit like, ” its not fair, I prefer it when they’re at school” and believe me, you here LOTS of parents saying that in summer holidays,nothing to do with the special needs aspect of it,After reading this post and some of the comments I find that as a mum that loves the freedom,the break,and manages to free up summer from any appointments of any kind, so we can kick back from all the routine side of things,maybe I’m the strange one here.

    • 48

      Laura Rossi says

      Thanks for taking the time to comment Sharon. I prefer to be around my children as much as possible and miss them deeply when they are at school and I love them very much and yet “kicking back” and “relaxing” and having “freedom” are things my son can not do. He needs a schedule, the exact routine, and the opposite of freedom, kicking back, etc.

    • 49

      Marie says

      I can see both points of view here, I think the term special needs parent is being used in this post to describe mainly parents of children with mainly sensory and behaviour issues, so its not going to apply to every one.I think a lot of the sensory issues etc apply mostly( not all) with autism and not all special needs moms have a child with the same problems and so alot of it won’t apply to them and would come across as quite negative. I think it’s better not to assume all special needs parents have the same experiences and we need to welcome different parents with their differing experiences and points of view, after all we are all parents of children that have differing special needs. :)

  18. 50

    Kristen Mae at Abandoning Pretense says

    My 3-yr-old, who is sitting with me as I read this, just saw the photo and said, “Awww, his ice-cweam fewll on da gwound!! …Dat’s why you don’t wawk and eat at da same time.”

    Stay strong, momma. You got this.

    • 51

      Laura Rossi says

      Kristen: your 3 year old is wise. You are right – no one can do it all. So I’ll keep focusing on one task at a time and eating lots of ice cream, too. Thanks for making me smile!

  19. 52

    Laura Rossi says

    I am humbled and inspired by all of your comments and contributions here. Thank you Scary Mommy community. I’m taking the time to reply to each one of you b/c your words mean so much to me. It’s slow going b/c I will get back to all of you! Thank you again! Gratefully yours, Laura

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>