14 Reasons Summer Sucks As a Special Needs Mom

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.

About the writer

Laura is a blogger, proud Mom of girl-boy twins (one with special needs), social media addict, and a p.r. expert. Laura’s blog My So-Called Sensory Life was recently mentioned in MORE magazine (June 2013 issue) and was named a “Top 25 Most Inspiring Families Blog” by Circle of Moms.

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Julie 3 months ago

I’m so glad I’m not alone. I’ve been feeling like a jerk because we are only into our first weekend of summer and I want to run away. I spent a couple of days googling Schedule Summer Special Needs and activities and anything else I could come up with. While I found a lot of activities, actually implementing them in a schedule is a different story.
I have 4 kids that range from 8 to 1 and the oldest two have Down syndrome. With all their needs for a schedule and a babies demand of a schedule and trying to make sure my typical daughter isn’t lost in the shuffle, I feel a nervous breakdown coming, and this is just thinking about it and trying to come up with a schedule.
And then there still things like the house, the laundry, the meals…

Then I googled hating summer break special needs and there are tons of blog posts. I almost laughed because I realized, once again, that we really do have the same issues and emotions(even ones that make us feel like jerks)regardless of our child’s SN. It makes it not so lonely and makes me appreciate social media more because I can’t imagine how isolating this is without being able to reach out to others.

Thanks for writing this post.

jen 3 months ago

Thank you so much for this! It is SO good to know I’m not the only one. Brilliant! It took me a while to accept the fact that crazy, spontaneous summer days were not in my kid’s best interest, and we are SO lucky that we got ESY into our IEP this year. WHEW.

Thanks for sharing this. And we’ll all toast our sloppy ice cream cones when September comes back! :)

Jess 3 months ago

No one understands how I could dread summer so much…except for a special needs Mom :) Above all else, #8…oh my goodness #8

Laura 3 months ago

I dread summer every year. The older he gets the harder it is to try to get his behaviors under control. The days of attempting to attend summer library programs are over. It’s freeing in a way but sad. I don’t take him anywhere by myself if I can help it. I’m a single mom though so there are times I can’t avoid it. I have 2 other kids and I feel bad about them missing out on things. Sometimes my brother will take the others for a fun outing somewhere so that helps. Glad to know I’m not alone in this.

LeslieKH 3 months ago

Guh! I don’t know how parents do it!! I am a special education teacher and I am shocked that your son isn’t offered extended school year with OT, PT and S/L therapy or a camp specific to your sons needs. Qualifying is based on regression and recoupment – you noted that the regression begins right away. If the team is saying he’s not eligible, fight for it :)

Sheila 3 months ago

I have a different opinion about this article. I have a son with special needs and summer is difficult…that part I agree with. But I love summer! There are so many opportunities to try new things. The schedule is still there to a degree, but because it is lighter, he can cope with trying new activities, venturing out with the bugs, playing outside and entertaining himself. Of course there are struggles, and meltdowns, and regression. But I feel like it is such an opportunity to see him grow and overcome obstacles, that it makes me proud. I sometimes dread the transition back to school, and the explainations to bystanders as we leave a park with a boy having a meltdown but I try to hold onto the positives like; yes we had to leave somewhere, but he did awesome outside with the bugs for the time that we were there. Things like that, the growth from the previous summer, or new adventures that we were able to somehow manage….those are worth more to me than all of the list of reasons why we dread summer. It’s a journey full of setbacks and challenges, so when my son does something that he has never been able to do, even if it’s for only a brief time, I want to celebrate instead of complain.

Stacey 3 months ago

As you said, you can’t relate. Depending on the special needs of the child and the school district, there are services that the school sometimes provides that the parents have to find, pay for, and then shuttle their kids to and if there are a lot of therapies that gets added. Those therapies aren’t every day at the same time for the same length of time, making it hard to develop a routine that is the same every day. For some kids it can take several weeks or a month to just get over the fact that they are no longer going to the school that they went to nearly every day. That’s a good chunk of the summer and then you get to deal with the opposite problem at the end of the summer.

Jessica 3 months ago

In regards to the people who stare. Some people might think that the ones staring are judging, criticizing, or getting angry when a special needs child is acting in a way that isn’t “typical” tantrums, etc. However, not everyone who stares is being negative. Maybe they stare because they sympathize with you, or empathize. Maybe they have a child who is special needs, or knows someone who does and can relate. Maybe they are just curious as to what was going on. It’s hard for people not to look when a child (of any age and needs or not) is acting out. When moms of special needs kids get stared at, they tend to think everyone is thinking negative thoughts, when it’s possible they are just looking to see what the fuss is about or want to send good thoughts your way. Some people are cruel and may think or even say you’re a bad parent for ‘letting’ your child act that way, but I would rather think that they are just trying to understand, instead of judging you for the actions of your child. Just a thought.

Lisa 3 months ago

I dread summer vacation. I love my kids they are my world, but I struggle with bipolar, I have an almost 11 year old son who falls just shy of an aspergers diagnosis and a six year old with sensory processing issues who has thoughts of hurting herself that we are still trying to get help for. For me it is scary because they both run off usually in two different directions don’t understand stranger danger and have social skills delays. If I can’t find a friend to come along them I usually stay home which results in frustration tantrums melt downs and sometimes my children rolling on the floor trying to beat on each other. It leaves me feeling trapped and I often find myself alone and depressed because most of my friends don’t get it. I hide from them and have automatic responses to invitations that I already have plans and I’m sorry I can’t make it. If I hear one more time I don’t know how you do it because I would have already given them up or beat the crap out of them I am seriously going to snap. I don’t know how I do it I just do they are my kids and they need me case closed. And as for the stares and rude comments, some days I just want to sit on the floor wherever we are and join in on my child’s melt down because it is such a frustrating feeling that I can’t even put it into words. Some days I wish I could just curl up in a ball and cry. It is a very lonely world raising our special children especially when you are surrounded by people who don’t understand…..

Christine Bush 3 months ago

I hear you on the structure, fellow Mama. Thankfully (as another parent mentioned above) our 5-year-old has a 12 month IEP, so (with the exception of a couple of weeks off in June and August) he’ll be in his regular classroom environment.

We see this a lot on weekends, though. I’ve always been a very relaxed, let’s just see what happens with the day type of personality, so it’s been a real struggle for me to switch over to a more regimental way of operating. We’re finding our groove, though!

Thanks for sharing your world :)

Gen 3 months ago

I’m just curious, if schools went to a year-round schedule, would it help? I’ve always been supportive of the idea of year-round school because the current schedule seems so inefficient to me. My kids do not have special needs, but they do crave the regularity of a schedule (unless I want my entire house destroyed because they are “bored.”). So, guess who gets to homeschool them for three months! lol I keep fantasizing about a day when kids and teachers in school don’t get burned out and summer slump is a thing of the past.

LLL 3 months ago

I kinda get what you’re saying. I’ve worked with children and teenagers with spectrum disorders and had personal contact with kids with various special needs and, honestly, the ones that cope better as they get older are the ones whose parents say to them “sometimes you will have to do things that make you uncomfortable, that’s life, we will figure out a way to deal with it when it’s really bad but sometimes you will just have to be uncomfortable. I’m not going to make you do anything dangerous. Trust me.” And also the ones with other children do have to say “There are other people in this family, they do stuff that they dont like to make you happy, sometimes you will have to do stuff that you dont like to make them happy. It’s part of being a family.” Autism and all the other spectrum disorders are a challenge and obviously there are varying degrees of severity but with low to mid-range sometimes a tough approach is needed to help them learn to cope with later life. They aren’t going to have a million people guiding them through every single facet of their life and buffering them from the things that cause them anxiety.
Obviously I don’t know the severity of this lady’s sons condition, and her sons specific issues so can’t comment on what I think she should or shouldn’t do, that’s not my place. I just mean in general.

Suzi Austin 3 months ago

Summer is a cruel joke for working parents of special needs kids. After a certain age finding a place for them during the day is hard. Finding activities means getting adjusted to new people and a new routine. It’s more than I ever understood before I adopted my son.

Bellum 3 months ago

I have 3 kids, two with special needs. I detest summer. Trying to schedule summer programs so they have a somewhat predicatable day is so hard, especially because they all have such different needs. Plus therapies and trying to fit in the fun stuff is overwhelming. The only consolation is that they are no longer little, and won’t run off anymore. Thank you for telling it like it is!

Dianne Hansen 3 months ago

Thank you so much for this. This afternoon as my eight year old son was laying in front of the local grocery store refusing to move because ?, the thought passing through my head was omg, soon it will be summer and this will be a daily occurrence. I love to do things with the kids in the summer but the energy and effort required are exhausting and finding respite is often more difficult than usual. We love to do things outside but my son is often a runner and he loves to challenge. I am an ‘old’ mom and most days I feel even older.

Alyssa 3 months ago

Yup.
Yup yup yup yup yup yup yup yup yup.
Both of my kids are on the spectrum, and they LOVE school. Summer is hard for them, too.
Luckily my husband’s family live in an apartment complex with a pool that they let us use, and many of the other families have kids with special needs, as well.
(The pool we used to go to was frequently occupied by nasty, judgmental parents and they’re equally nasty, judgmental children.)

Jessye 3 months ago

I am a mother of a special needs child, not autistic, but an actual mentally and physically handicap child and I don’t have these issues. I have several friends with children with special needs and different disabilities, those of which also have tantrums, and I consulted with them on this and they don’t have these issues. Maybe it is a parenting issue…. I’m not trying to be ugly, but it sounds as if u r being that way, they r ur children how can u talk that way?

Katie 3 months ago

For us it’s fall. Because 1 back to full time tell that to time expectations . and demands 2. New, new teachers classes people. All with a new set of expectations. 3. Time changes. 4 less outside free time. More outside time equals more inside time kids inside in than places equals more noise and sensory overload and false lighting. Fall is by far worse for us

Kerry 3 months ago

I also dread summer. ESY…hahahahahaha!!! I actually “declined” this summer because 3 weeks for 3 mornings is not worth the hassle of transitioning him. I think this is a tragedy for our special needs kids as well as general education. Year around school just makes so much sense for every body…but I digress.

We are at the pool and instead of swimming, my son is trying to find a way to throw dirt from the flower pot in the pool. I love summer! LOL

Thanks for the great post! xo

Maria 3 months ago

We became a special needs family of sorts 6 years ago when our 4th and 5th children were diagnosed with multiple food allergies. So many people don’t see the need because they look like typical kids. The hardest part about summer is the foods and gatherings. We lug along coolers full of special snacks, hot dogs, buns, dips and ice cream. Along with an arsenal of Benadryl, EpiPens and inhalers. The idea of going out for ice cream or to a new restaurant are so overwhelming that we just don’t do it. The older boys miss the surprise of those trips but cope and support amazingly. While our children have become very aware and independent with their restrictions the same bagged lunch 180 days out of the year is easier.

Melanie 3 months ago

This is by far the most touching and heartfelt article I have read on SM. While I do no have a special-needs child, I work in the field and have met many truly amazing children with special-needs. In the two years I’ve been in this field, this has never crossed my mind. Kudos to you for bringing it to light. Keep up the great work momma!!

Meg 3 months ago

This. All this, and also the loneliness of not having people to talk to who understand your minion and all his quirks. The inability to say “Hey, why’s he doing this? Can you bring the behavior analyst in and see what she thinks?”
Ds5 (ASD/Sensory) has 2 days left of Kindergarten and I’ve been panicking for weeks. I’ve copied down his daily schedule from school so we can (try to) emulate some of the structure. I bought workbooks for him to reinforce what he’s learned this year, and flashcards for sight words. We’ve got play dough, shaving cream, and will be getting a sand/water table for sensory play. Oh, and I’m buying blackout curtains, because he already won’t go to sleep “because it isn’t outer space yet and the sky is still awake.” Unfortunately he doesn’t really get much social interaction at home aside from Ds13 and Ds1, who both have their own needs. It goes without saying that I can’t even begin to match the level of care he gets at school with his different therapists. I’m hoping we’ll qualify for some kind of ESY next year.

Keep your head up. All you can do is your best.

Lora 1 year ago

Sorry, I hit post too soon :). I think summer is easier for me because we homeschool year-round. So there are no changes to routine, schedule, and little transition. I will admit that as a homeschooler, winter can be brutal, especially when we can’t play outside (my son has little tolerance for cold and I have to force him with a timer to get some outdoor time in the winter). So I love it when summer rolls around!

Lora 1 year ago

I was intrigued by the title of this article because as a special needs mom, summer is my favorite season! The energy burned off outside, the healthy fresh air and sunshine, the beach (fortunately my son tans well so he doesn’t need a lot of sunscreen which he HATES – and he can handle sand as long as we don’t try to eat on the beach – that’s just going too far lol). We also have a pool so that really helps regulate my son in the summer.

Catering finger food 2 years ago

Will you let us more about this? I’d want to discover more data. Much obliged!

Mapril 2 years ago

Thank you for this post. I have three special needs daughters and three “typical” daughters. I also run a business. I feel do incredibly guilty when other moms talk about summer and I have the first day of school circled on my calendar. It’s very difficult.

Tina Brown Harris 2 years ago

What a WONDERFUL post! I am a Mom of 3 boys 16, 11 and 4. I have been struggling with my 11 year old since he was around 2. I knew something was different about this child and everyone including several doctors kept telling me "oh he's just a boy". Yeah right, so many of the things you talk about here are what we go through on a regular basis. It took me YEARS for him to be diagnosed with ADHD and he's been on med's since he was 2 for severe eczema. I don't know if it's society or just how I was raised, but I'm looked at like a "bad parent" with an out of control child, he just needs a good beating…or whatever stupid remark you can think of. What I mean is that he looks like a "normal" child that is until he goes into meltdown mode. There have been so many other contributors to his "special needs" that I won't write a novel here-daddy issues. I suppose the biggest point I was trying to make is that we all have "issues" whether we have a special needs child or not and it is SUCH a breath of fresh air to hear that there are those out there that are supportive. So very often I get those looks, stares and comments. Sometimes it takes every last ounce of me to not go off on the ones that are so judgmental and ignorant. BTW- we JUST came back from a 5 day trip and I can say it was AWFUL! He whined and complained the entire time, carried on every night, even threw a chair at one point, just made for an really CRAPPY vacation.

Sophie 2 years ago

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.

Laura Rossi 2 years ago

Thank you for taking the time to write here Yvonne. Your words are so inspiring and knowing there are kind and smart and generous people like you out there supporting others is very inspiring and comforting. Cheers to you! Laura

Laura Rossi 2 years ago

Susan : You Rock! Love what you wrote “I appreciate your honesty, people think having a special needs child gives us some ability to never feel or show the stress and trepidation that accompanies simple things other people may take for granted. Here’s a newsflash, sometimes having a child with special needs sucks…” and I, too, would not change ONE thing! Your fan, Laura

Laura Rossi 2 years ago

Dayna,
You are SO right about the babysitter — it is so tough for special needs parents to get the right person and we can’t always rely on family members. Keep up the great work. Thx for taking the time to comment.

Aimee 2 years ago

Ouch. I think that Laura IS being the very best parent that she can be, but being a parent, and being a professional teacher with specific skills, are quite different. Even with a “typically developing” child, my son’s educational desires have outgrown what I can offer him all on my own…sports, music…. I can’t even help him with his math homework anymore! And it’s wonderful if you can be with your children all the time, but many parents MUST work. My son is now beyond the age of day camp but too young to have a summer job. He is enrolled in quite a few sports & activities, but there’s a lot of free time in there too. He’s a good boy, but I still worry.

Dayna Jennings Camp 2 years ago

I can definitely relate. And to top it off, getting someone to stay with your special needs child isn't like just finding a babysitter for a typical child. Our son is in a wheelchair and is older now. I can't think of 1 person I would call upon to stay with him. We go through a caregiver company and usually have to ask in advance. No room for spontaneity at all. Taking David anywhere is very difficult so we usually don't go anywhere. He is out of school now and we have that "summer feeling" all year, although we have come to create our own new routines. Thanks for sharing! I don't feel as alone.

Laura Rossi 2 years ago

Thanks for all the comment love here. I’ll be replying to each and every one of you after the holiday weekend. It means so much to me to hear from you here on Scary Mommy and I can’t wait to write you back. Enjoy the day.

SUsan 2 years ago

WOW. Someone was able to put it into words for me. I am with you and I completely get where you are coming from. I appreciate your honesty, people think having a special needs child gives us some ability to never feel or show the stress and trepidation that accompanies simple things other people may take for granted. Here’s a newsflash, sometimes having a child with special needs sucks, there I said it. But if God himself came down and said he would change it all for me, I would tell him to take a hike. Be well.

Julie 2 years ago

I hate summer break. I am a working mom with sons 11 and 8 and a daughter who is 5. The boys fight A LOT and my daughter gets bored. I have to pay a babysitter (extra expense). I understand kids need a break but we are out before Memorial Day and don’t go back to after Labor Day. I feel guilty that I am not creating wonderful memories for them

Laura Rossi 2 years ago

Gina, I agree about small miracles and it makes me SO happy to hear you had one last night. It’s so inspiring to hear how you and others here keep trying no matter what and that they work hard and have beautiful family moments because of their deep love and commitment to their children. My personal blog is about celebrating one special and unexpected gift every single day! So thanks for sharing yours. Laura

Laura Rossi 2 years ago

Karen, that does sound hard. Hang in there. Poor guy! I know how you feel. Thanks for writing and commenting. Cheering you on, L

Morgin 2 years ago

As a special educator of children with severe/profound disabilities this breaks my heart to read. Someone has faltered at assisting you with summer transition. As a eat practice every May before school is out we try and get our parents together to talk and brainstorm summer activities and way to involve the community (because as we know it truly takes a village). Next year at his annual IEP (or even well before then) get his team together an start asking questions about summer activities and easier ways for your son to adjust. There may be more resources out there that you aren’t aware of for your son so he is able to enjoy “free time.” Ask the staff to assist you in making a leisure visual schedule and to incorporate summer social stories in to his curriculum. This is supposed to be his time to enjoy ( and teachers time to relax and plan, plan, plan for the next school year). I think a little more help with transition and getting teamed up with other families in our same situation may make a worlds difference. If you haven’t already try finding people in your same shoes on sites like myautismteam.com or org i cant remember etc. Raising a child is tough enough, raising a child with varying needs is even more challenging! Get involved with the community so you don’t have to do it alone! Best Wishes- M.C.

Danielle 2 years ago

Oh darling I feel your pain. I share with you the same struggles, Although I only have one child. He is on the spectrum with sensory integration processing disorder, And the summer has to be the most difficult time of my life

karen 2 years ago

I can so relate working full time and being a mother of a child with special needs summer is hard. I worked hard to find childcare for him. So far we are in week 4 and he has been sent home 1 day a week 3 weeks in a row and I didn’t even leave him yesterday because he arrived there with issues and I knew it would be a matter of time before they asked us to pick him up. It is so hard.

Gina 2 years ago

What a great blog. My thoughts are with you. We have a daughter that is 17, she has DS and autistic tendencies. We are in the middle of our only summer vacation. I totally understand where you are coming from. Most people don’t “get it” – that comes from experience =) Even eating out a place to eat is tough, we have to pick a restaurant that has booths. And if we happen to sit by a crying baby the meal is over. We have started splitting up, and taking turns at activities because she would be happy to stay inside at the condo every day. That has worked in the past but I noticed everyone has been sad this trip – it’s just not the same. The pool used to work for a short period of time but that has been a joke. The way people stare you would have thought we ruined their whole vacation. I totally understand and you are not alone. But we did have one great night last night. We went to Footloose at the Playhouse. Now of course, we had to find the perfect seats, to the side. There is a procedure for everything we do. But small miracles do occur – she LOVED it!!! Didn’t hurt that she fell in love with the main character (hormones and being a teenager is another book!!) it is small moments of time that give us hope.

danijus 2 years ago

Thanks for sharing! I have been sleepless wondering who the school system is actually serving between working parents and special needs family. Our ESY is 3 days a week for 5 weeks from 8:00 am to 11:00. To top it all off, it is not at the usual school, they centralize it in a different school each summer?! Hello!?! I want to scream… “Are you joking?!?” It’s very hard to explain over and over that we are not going to the circus, the summer theater, the beach….

We have had big gains this year and, for that, I am so GRATEFUL. Now everything revolves around not losing ground.

Yvonne 2 years ago

Thank you for sharing this. I am a stay-at-home mom with two regular toddlers, and quite frankly, sometimes don’t feel so good about being with my kids all the time. Reading this and the comments have helped me gain a better perspective. I still can’t imagine how it is to walk in your shoes but I have a lot of respect for you and everyone out there with a special needs child because your challenges are so much greater. I admire you for your choices to give up a lot of things that are taken for granted in other families in order to ensure the happiness and well being of all of your children.
I hope that I will never judge anyone coming along with a child who is throwing a tantrum, not knowing what their background is.
Thank you for helping me keep things in perspective.

La Tonya 2 years ago

I understand what you are saying 100%. I take care of my brother (profound intellectual disability and autism) who is 26 years old ( I have been caring for him since he was 8 years old) and he use to have have the worse tantrums. He couldn’t tolerate loud noises, crowds or changes in his schedule. But, I refuse to become a hermit and give into the stares of others. So, I began to embrace and look forward to the summers. I started taking him on the bus early, but headphones on…took forever to find music he enjoyed…this way before for the Ipod! But, overtime I found the right formula that worked for us….eventually we were able to take him to Mexico and even Las Vegas! Now, I have a four year old with a sensory processing disorder…and have found a way to make an 8 hour schedule that works for him and still get home in time to get my brother off of the bus. So, I say it might seem challenging…but given time things can get better and forget the people who stare and focus on the people who are smiling cause they understand!

Siobhan Green 2 years ago

Everything you said, plus one more element – cost. As my husband and I work full time, we need full time childcare for both kids. We have tried all sorts of summer childcare arrangements and camps and activities, and they are really hard to get for special needs kids. When you find them, they are often 2-3 times as expensive as non-special needs programs, and there can be waiting lists. When we have tried to use non-special needs programs, we have run into lots of issues with the limitations of the programs to be able to support my kid (he has been expelled more than once from mainstream programs).

This year, we just bit the bullet and got a full time nanny who has experience with special needs kids (she is getting her Master’s in special ed, and is a teaching assistant in the special ed classroom at a local elementary school). It is costing us a fortune, but this is the absolute best approach to summer childcare for both my kids.

But I know this is not an option for most families. We are insanely lucky to even have her.

Stacey 2 years ago

I have two boys, both with sensory issues. Thomas (who has autistic tendencies but not enough to fall on the spectrum) will be five next week and Isaac is thirty-two months. Thomas has been in day care since September 2010 (three months before his brother was born) and we learned our lesson last year when we took him out for a six week break. We did not know then he had sensory issues (that came soon after we started him back), but taking him out of a routine and putting him back in one didn’t set well with him. He starts kindergarten this year and we were going to keep him out for the summer, but decided to let him go twice a week (the day his speech therapist visits). We are also sending his brother twice a week.

It has been a crazy summer already, and it’s only been a month since he went from five days to two days a week at day care. Summer birthday parties are in full force, with bounce houses and water (and water bounce houses/slides), two things Thomas does not like. We get stares at the birthday parties since he sticks to me, but hey, it’s their problem, not mine, that you think something’s odd about my kid. Thomas has had several shining moments (like at Vacation Bible School this past week, when he actually went on stage for the closing program, albeit with his dad within an arm reach away); I wish more people could look at that and not his quirks (I try to emphasis his triumphs on Facebook as much as possible because of that).

That being said, the daily fights with his kid brother (Thomas loves provoking him, and Isaac has meltdowns over every little thing as it is) are driving me crazy!!!

Stan 2 years ago

It’s so very sad that this mommy sees summer as a hardship — and it sounds like her entire family’s activities revolve around her son’s special needs. It makes me sad that the rest of the family and their other kids aren’t able to do fun, spontaneous summer-y things lest it throw the kiddo with autism life. It sounds like in becomes almost a self-fulfilling prophesy — fun activities are halted in deference to ONE family member, ONE family member doesn’t even get the chance to DEVELOP the go with flow skills that would make everybody else’s life more pleasant. It would be so very sad if by catering to one particular child (he’s autistic!! He shouldn’t be required to suck it up and go to the park at the last minute!), you alienate and create resentment from his siblings/rest of your kids

Suzanne Perryman 2 years ago

yeah hard work it is .. the ipad is great fun until you are competing with it… lol. I just posted today how Pinterest is helping me parent this summer. Has been a major help to keep my girls busy especially when it’s 119 degrees out, I am guessing boys can be a bit more complex -especially if you throw in the special needs sensitivities.. Good luck! I found a great summer sangria recipe that is helping me get through too!:)

Laura Rossi 2 years ago

Blair: my heart is FULL after reading your comment. It’s having an open mind and being thoughtful, loving, and understanding that makes the world a better place. I am SO happy this post helped you. I think when we tell the truth without sugar coating it, the others around us (friends, family) can “get it” more and see why sometimes we can’t be spontaneous or why a melting popsicle can ruin a day…thank goodness you car so much about your family and about embracing your brother in law. :)

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

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.

Blair Francis 2 years ago

I can’t relate to raising a special needs child, but this article gave me perspective into my brother-in-law’s life (He has Aspergers). My in-laws family situation is soooo different from my own and it is sometimes hard to understand why things are, the way they are… but this post clicked with me! Thank you! I believe this will help our relationship going forward.

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

Alison, I’m so glad the post resonated with you and touched you. It feels good to feel a community here and around our unique challenges. I loved hearing about your ideas and suggestions — I love Michelle Garcia Winner and I’d love a camp based on her curriculum. It’s so hard to have non-professionals try to be in charge of our kids during the summer but at least ESY and IEPs help. Keep up the great work Mama!

Laura Rossi 2 years ago

Hi Shell, Yes change / transition — those are the conditions that make things so hard. The unpredictability of life outside of school. But we do our best every single day here and that’s rewarding.

Laura Rossi 2 years ago

Thanks, Suzanne. You “get it” I know. And I have vowed to have a great summer no matter what! We’ll just have to work hard at it! Cheers, Laura

Laura Rossi 2 years ago

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

BmoreMom 2 years ago

I don’t have special needs kids so I can’t relate.(I do however, have a son labeled Special Ed that has “psychological issues”. But this article makes me mad. Why is it such a problem to actually PARENT your own kid? This writer is upset that she doesn’t have strangers (teachers) taking care of her kid all day? Teachers are NOT babysitters.. Put your kid on a schedule.. be a parent and take care of your kid! Quit complaining.

Marie 2 years ago

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. :)

Suzanne Perryman 2 years ago

sharing this! Love the honest and real approach to parenting through the summer as a special needs mom. It’s tough for sure, but rewarding when you have those awesome moments shining through. Thanks for the real glimpse of those times we all experience.

Jessica 2 years ago

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. :)

Becky Gaines 2 years ago

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.

Laura Rossi 2 years ago

Mama D: I’m going to start using a board too. We do individual schedules on paper but I think he needs a board too to glance at. Thanks for sharing.

Shell 2 years ago

Summer is rough, for sure. My son needs routine and as much as I try to come up with one for summer, it’s more likely to change than during the school year.

Mama D 2 years ago

Oh, I have so been there!! My son does much better with a regular routine and summer always (always!!) throws him off. I have a big whiteboard in my kitchen, and every Sunday I write the schedule for the following week on it (camps, events, classes, doc appts, etc.) My son knows that he can go and look at it anytime he wants so that he can wrap his head around whatever we are doing that week at his own pace and ask any questions he needs to. The no-surprises approach works for us.

sharon Stewart 2 years ago

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.

Alison 2 years ago

I rarely comment on blog posts, but WOW this one spoke to me. I was in tears when I read this – I identify with almost all of your comments.

My son had the most amazing school year (with a WONDERFUL caring and structured teacher and a great support staff at his school), but day camp is a different story. Last summer I prepared a one page summary about what kinds of behaviors to expect from him and how to help him if something triggers him to become upset, but the kind and well-meaning high school and college aged counselors just don’t have the experience to really address his needs. The regression this summer is noticeable. Even though my son says that he enjoys camp and doesn’t fight me in the mornings to go there, he’s one of the only kids I know who can’t wait for school to start again in the fall.

In addition to a regular day camp we’ve done for the past few summers, I found a sleepaway camp for him this summer that integrates Michelle Garcia Winner’s “Social Thinking” curriculum into every day. They don’t allow electronics (which he was VERY concerned about) but they have a very structured schedule that doesn’t vary from day to day, and a staff who are all trained to understand and care for the population of kids they serve. He’s only been gone for 2 days but I’ve found 4 pictures of him on the camp website – ALL with smiles! I’m hoping I will be able to relax a bit for a few weeks (if relaxing can include obsessively stalking the camp website for photos of him). Thank you for your post – it helps to know I’m not alone!

Laura Rossi 2 years ago

Kim: your post grabbed my heart. Such eloquence “I think what I find hard is that there are no bike rides, no playmates, no basketball – he’s in the house with me, all the time, and we can hear the sounds of “normal” summer going on around us.” Wow. Stops me in my tracks. The key for us all, perhaps, is in the line that your son does not seem bothered by it all and as parents if our children are happy then we have succeeded (I hope). Stay the course Kim. Your young man is very lucky.

Kim 2 years ago

My special needs son will be 18 in two weeks. Lucky for us, he has ESY, so he only has two weeks’ free time at the beginning, and another two weeks’ at the end of summer. He’s home from the summer program at 2:00 each weekday.

I think what I find hard is that there are no bike rides, no playmates, no basketball – he’s in the house with me, all the time, and we can hear the sounds of “normal” summer going on around us.

It makes me sad, but it doesn’t seem to bother him as he goofs off on the computer or watches DVDs.

I wonder what his adult life will look like – and it’s a pretty scary thought.

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

Prim: you are not alone. I forget this fact all the time but today on Scary Mommy we are united and supporting one another and when a dark day or hour arises this week let’s all remember we can do this and we are an invisible army of brave and tough and loving Moms. Cheers, Laura

Laura Rossi 2 years ago

Maggie: You are right and so spot on plus you are an angel….love you. Thx , xoxox Laura

prim 2 years ago

I relate to all of this and I am so grateful for your honesty and candor. It helps to know I’m not alone with these feelings and that summertime can be a particularly challenging time of the year for parents with special needs children.

Maggie May 2 years ago

Honesty makes hard things better, and is the only way to create change. xo

Laura Rossi 2 years ago

Chelley: you are a Mom that inspires me every day so this comment means A LOT to me. Thank you. xoxox, Laura

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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

Laura Rossi 2 years ago

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.

chelley/aisforadelaide 2 years ago

Beautiful piece, Laura! You’re doing a kick butt job as Mom, and I promise, if you ruin someone’s vacation with one tantrums, they’re the ones who have the problem <3 you!

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

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.

Laura Rossi 2 years ago

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?!! :)

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

LW: You nailed it my friend. You have a great way of explaining the dilemma and since my children are twins I have to balance both. Special needs parents and children and families are all trying so hard — every day of the summer all day long. My children are gifts (both of them) and I try to be the best Mom I can be every second.

Laura Rossi 2 years ago

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.

LW 2 years ago

It’s the structure that many kids thrive on, so Sharon, when you say that you can kick back from the routine, that is exactly the problem. Many kids need a routine all year around, and when they don’t have that routine, it causes stress for all, including the child. We can try to duplicate the schedule to a certain extent, but change in the schedule during summer is expected. And this is very hard for some kids to handle. Throw in typical kids that just want a laid back summer and vacations, etc. and extra stress is inevitable. It’s not that parents of SN and typical kids are not trying.

Sally 2 years ago

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.

Laura Rossi 2 years ago

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

Laura Rossi 2 years ago

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

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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!

Laura Rossi 2 years ago

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.

Kristen Mae at Abandoning Pretense 2 years ago

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.

sharon stewart 2 years ago

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.

Samantha 2 years ago

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.

sharon stewart 2 years ago

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.

Brenda Dion 2 years ago

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.

Kathy Radigan 2 years ago

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!!

jasbeeray 2 years ago

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.

LBM 2 years ago

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….

Anastasia @ eco-babyz 2 years ago

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

Sophie 2 years ago

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!

dlt 2 years ago

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.

Elizabeth 2 years ago

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!

Kat 2 years ago

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.

Teresa 2 years ago

Thank you for putting it in such eloquent words.

Jen 2 years ago

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.

Vickie 2 years ago

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

Amanda 2 years ago

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!

Betsee 2 years ago

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.

Sara 2 years ago

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

Angela LaRoche 2 years ago

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. =)

Anita@ Losing Austin 2 years ago

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.