Why I Wish There Were 500 Days of Summer

I’d like to say that I have no idea why I’m awake this early, because it is not a humane hour at which to be awake when one doesn’t go to sleep until 2:45 a.m.  But, I know exactly why.  And, it’s only going to get worse.

Summer vacation is about to be over.  I am trying my damnedest not to freak the hell out, but I can feel it bubbling right there under the surface of my very thin veneer of calm.

In rereading my posts of late, I realized that few of them are really about Helene or autism.  Why?  Because, we’ve been on summer vacation.  Because, despite all the articles and evidence and research and results that say that a child on the spectrum thrives in a predictable, structured environment, my little half-pint loves lazy, free-form days.  She gleefully moves about the house on zero schedule, randomly flitting from a television show to the trampoline to the sandbox to singing to playing with her new doll house.  She tells me when she’s hungry, and I feed her.  Sometimes lunch is at 11:30 a.m. and sometimes at 2:30 p.m.  The only time she gets grumpy or pissy is when I’m not paying enough attention to her (with “enough” being decided purely by her mood and whims), or when I announce we’re leaving the house (more on that part in a minute).  Yesterday, without a word, she went into the bathroom and used the potty.  ON. HER. OWN.  She even wiped (with about half a roll of toilet paper) and flushed.

Sure, the beginnings and endings of our days have routine.  We do the same things every morning:  use the potty, brush teeth, have breakfast.  We were pretty good about getting dressed, too, but I admit that we spend a lot of days in our pajamas.  Both of us.  This should be one of the benefits of working at home and it being summer, right?  (Right.  It’s a rhetorical question with only one correct answer.)  And, every night, we start getting ready for bed at 8:45 p.m. with the same flow of events.  But, between waking and bedtime, it’s a free-for-all, and Helene is totally down with that – as am I.

Admittedly, Helene’s willingness to be schedule-free at home has not translated into a willingness to venture outside the house.  Many times, getting Helene out of the house is a project, because she is convinced that we are taking her to school no matter where we say we’re going.  There are certain places we offer that we know she won’t fight – her aunt’s house, her grandparents’ house, Target (??!), the magical place that has frenchfrieschickensapplesmilk.  Other times, though, getting her out of the house requires some serious physical and emotional strength.

Sigh.

In a few short weeks, school starts again, and with that comes the end of the break in Helene’s anxiety and mine.  School ended on July 20.  Every morning since, Helene starts her day by shuffling blurry-eyed to the bathroom, telling me, “Mama, no school, no friend.”  If I don’t assure her right away that – no – we aren’t going to school to see “friends,” she will launch into a meltdown of gargantuan proportions.

I cannot begin to explain how much I dread this.  And, I hoped with all my heart that Helene would be through the Regional Center process and have seen the developmental pediatrician BEFORE school started, but it hasn’t worked out that way.  Her development-pedi appointment isn’t until the end of September, and we just learned that Regional Center accepted Helene and assigned her a case manager.  So, the morning is coming where I have to answer the “no-school-no-friend” statement with an artificially positive, upbeat and comical, “Yes! School and friends! How fun!” while bracing myself for the anxiety that will overtake her (and then me).  I have no better approach to this than I did the day school ended.

My anxiety about this is hard to control, because I am conflicted.  On the one hand, I do believe that Helene benefits from school.  Part of her resistance to school and schedule is because she’s a bossy five-year-old who likes to do things her way, and life just isn’t going to work like that forever.  I know she needs to learn about expectations and limits, and in the moments I allow myself to be objective and honest, I can admit that I am not the best person to teach her those skills.  I cave to her too easily because I don’t have the mental or physical fortitude to resist her for more than an hour or two at a time.  (Of course, I also don’t have four aides here with me at home … just sayin’.)  I also know she’s learning essential skills through OT, PT and socialization with peers.  I love Helene’s occupational and physical therapists — they are really bright, engaged young women, and their attitudes about and approaches to Helene make clear that they have a genuine desire to see her succeed.  And, although Helene’s teacher and I butt heads from time to time, she is very well-qualified for her job and has the absolute best of intentions.  So, there is nothing about the school environment I can point to as harming Helene outside of her clear anxiety about it.

On the other hand, Helene clearly HATES school.  What we discovered over the summer – quite by accident — is that what she may dislike most about school is the other kids, because it wasn’t until this summer that Helene added the “no friend” to her “no school” statement.  I arranged a play-date for Helene with a girlfriend from high school who also has a special needs child a little older than Helene.  When I was getting Helene ready to go, she kept at me with the “no school! no school” chant, and I said, “No.  No school.  We are going to the park to meet a friend.”  You would’ve thought I whipped her with a switch but for the scream that she unleashed from her toes.  “NO FRIEND!  NO FRIEND!”  I had some kind of out-of-body experience that let me get Helene out of the house, into the car and to the park.  She ended up having a great time as soon as she was visibly convinced that we were NOT going to school.  In the process, I discovered that Helene is less than thrilled by her classmates (a/k/a “friends”). What to do about that?  I cannot control who is in Helene’s classroom.  Helene also needs to develop social skills with peers (although she does pretty well with most people who are at least a few years older than she).

Also, Helene’s verbal skills seem to have exploded this summer.  We get “yes” and “okay” now in response to questions, instead of just “no” or “nope.”  She rarely pulls me to what she wants anymore; instead, she tells me or uses a combination of words and gestures.  She is frequently using verbs now.  She’s starting to get a handle on pronouns.  She’s even started putting (appropriate) words to some of her feelings, especially mad and sad.  A couple of days ago, she had a four or five-sentence conversation with the Hubs.  It was astounding.

So, here I am at this crossroads again, the person charged with making decisions about what is in my child’s best interests.  And, yet again, I feel completely ill-equipped for the task.  I don’t know.  I know what’s easier.  I know what’s less stressful.  But, I know that sometimes what’s best for you is what is hardest to do.

Where an I going with this?  Maybe I want advice.  Maybe I just need to write this down and get it out of my system.  Maybe I just want someone sending positive thoughts and energy for me and for Helene out into the Universe.  And, at least there’s this: my anxiety about Helene going back to school allows me not to think too much about the fact that Nate starts high school on Wednesday.  Yep.  One in kindergarten and one in high school.  Because that’s the way I roll.

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29 comments on “Why I Wish There Were 500 Days of Summer

  1. Flannery says:

    I’m sure you must have already considered this, and discarded it for some very good reason, but the first thing that comes to my head is “home school.”

    I’m not saying I could do it, because it just seems to damn hard to me, but if she hates school that much, and she’s progressing at home, then maybe, maybe it’s something to consider??

    • ProfMomEsq says:

      I do think about that a lot, especially given my teaching background. I probably need to talk more to some who have done it, because I think a lot of my indecision comes from fear of unknowns …

  2. akbutler says:

    I totally get this. For my middle guy, this has been his best summer yet. Yes, he’s had ESY but it’s limited and for the first time in 3 years he’s done so well there. We’ve gone with the flow – same thing of eating when hungry, wearing what we want, getting dressed if we want. My oldest has flowed with it too. But the anxiety of school starting has happened here…and I’m not ready to send him back.

    • ProfMomEsq says:

      Helene did much better with ESY than she did with regular school. Her ESY classes are with the same teacher she has during the regular year, but it’s on a different campus and some of the kids are new/different. I think the class was sparsely attended, and Helene’s favorite aide was there, so that made it less difficult. But, yep, not ready. Do you guys do anything in particular to work through the morning-routine anxiety?

  3. blogginglily says:

    Lily is almost the same. It’s been a nice summer. Not looking forward to “No want school.”

    • ProfMomEsq says:

      When does Lily go back? Do you start talking about it before the first day of school comes, or does that just make her anxious?

      • blogginglily says:

        whether it makes her anxious or not, we’ll probably start talking about it the weekend before. . . she may be anxious, but it’s nothing i want to spring on her the morning of. . . “Okay Lily, bus is here. . . see ya”

        • ProfMomEsq says:

          Does Lily have any concept of time (yesterday, today, tomorrow, etc.)? (And, it’s not at all nice, but I am ell oh elling a little at the WTF look I imagine on Lily’s face when the bus pulls up. You bastards!)

          • blogginglily says:

            I think she gets the concept “a bit”, but not much.

          • Leah Kelley says:

            Hmmmm… I am thinking that a count down calendar might be something to consider – sometimes this helps – perhaps rings of paper glued together (like a Christmas paper chain) and you cut one off every day…. or move a school bus/or image of your child one day closer to the school in a very visual way… to assist in building the understanding that school is starting again along with a sense of the passage of time and that the event is approaching….

  4. Jennie B says:

    I’m not exactly sure what to say here, except kids shouldn’t have to hate going to school so much! A few thoughts (and please excuse me if I’m way off the mark on any of these). Have you observed her in school? Moe was so grumpy for a while and I realized that they weren’t feeding him enough. I asked them to make sure he ate more at snacks and lunch and his mood improved so much.

    If it is anxiety, can you start back gradually? Maybe just an hour (or less) the first day? Then work your way up. Or give lots of breaks where she gets alone time doing a favorite activity? Are there special snacks or toys she can only have at school (this would never work for Moe, but maybe for some kids)?

    As for friends, is there maybe one in particular who she does or doesn’t like? Maybe her teachers have an idea about that. Or maybe she is being pushed to interact more than she’s ready to? Or perhaps she just can’t keep up with their energy/noise/etc.? Maybe a 1:1 aide for the first few weeks or months can help the transition back and help ease anxiety, plus give you some more insight into what is going on? Once you figure out the cause, solutions can sometimes be really easy (i.e. noise canceling headphones).

    Good luck. Hope it goes smoother than expected.

    • ProfMomEsq says:

      Not off the mark at all, and I really appreciate the suggestions.

      I have observed Helene in school, but in a very limited way. This is hard, because my presence alters her behavior, making my observation not “organic.” So, I rely a lot on the behaviorist and her teacher to help me decipher what’s making her most anxious, and I think they’re pretty candid with me. So far, no mention of any aversion to a particular child, but they have told me (and it’s not surprising) that Helene gets very upset when a classmate has a tantrum/meltdown/anger fit. I have only to use a stern voice to bring Helene to tears, and if we are out somewhere and she hears a baby crying … game over.

      We do have her on a “flexible” schedule – at least through kindergarten when attendance isn’t compulsory — where we just get to school whatever time we get there, Helene is picked up from the office and slowly integrated into the classroom. This is actually both for her and the other kids, who are easily distracted if she comes into the room like a Tasmanian devil. 😉 We did ask for a 1:1 aide in her last IEP meeting – denied. We are hoping the development pedi / Regional Center will provide some support for revisiting that issue.

  5. I really get this too. It’s heartbreaking. I’m so sorry she gets all that anxiety about school. At the same time it makes me happy to read what a lovely summer you guys have had. My son is the same way, he doesn’t really care for routines. He also hated school for a while (he got physically bullied so we pulled him out) and I am freaking out about him starting school in a few weeks. Good luck to you. I really hope it goes well.

    • ProfMomEsq says:

      Ugh – bullying; one of many reasons I am in no hurry to mainstream Helene. Is your son going into a school with different kids now? I am sending positive thoughts and wishes into the universe for you. Let’s hope we make it through the first week! 😉

  6. Oh sweetie. ((hugs)) and more ((hugs)). I don’t have any ideas or really any insight into what you’re going through – but I do remember being SO anxious and bullied through middle school myself, and how that stomach-pit feels.

    Do know that if you decide to go the homeschool route that someone mentioned above that I am ALL OVER the math for you. Like white on rice baby.

  7. Such a thoughtful, loving post! You don’t need advice. You know in your heart what to do.

    I’m the last person to recommend homeschooling because I dread the possibility of having to do it myself. I admire those who do it well. If I had to, I would be fine I’m sure, but perhaps there are alternatives – says the mom who enrolled her kids in 5 schools in 6 years.

    You have such smart readers. All great suggestions!

    It’s hard for any parent to watch a child navigate the complex, social web of school, but, with children like ours, don’t we have just a little more justification for helicoptering, probing and asking questions?

    You know, it does sound like the volume and stimulation in the classroom are negatively affecting her. We once paid a one-time fee for an education consultant to observe a kid in the classroom (mitigating the parental spy factor for both child and teachers) and assess whether the teachers had a clue how to help him succeed. (They did not.) Would something like that be worthwhile? They would look at the entire environment and perhaps suggest some tweaks to make it fit her learning and sensory needs a bit better. Whether the school is willing to implement, is another question…but it does seem like a good idea to identify the specific issues, no matter what you decide to do next! If you’re hesitant to homeschool (I certainly am), perhaps a hard look at why she’s so miserable might uncover some creative classroom solutions.

    Still, I probably should have just stopped blabbing after my third sentence. I think you know in your heart what to do. Best of luck!

    BTW, I’m so glad you had such a lovely summer.

  8. So many things to respond to in your post. You know your child best, but we all stumble onto the path of least resistance sometimes without even realising it (I am most definitely guilty of that) and that may not be the best thing for our little darlings. You may have tried all the things I’m suggesting, so ignore me if that’s the case.
    Stop pretending to Helene that YOU think going to school is fun for her, it’s not true and she knows it. Doing that will prolong her anxiety. Helene is totally following/mirroring your genuinely happy, easy, relaxed attitude to the holidays and the no schedule schedule. Try to ‘be with’ her in her anxiety around school, friends and going out. Try to give her the words to help to explain how she feels about these experiences and when it’s time to go to school. Your authentic support and understanding when she is feeling so vulnerable and afraid will help her to get through those feelings faster. I know that’s hard when they are thrashing about on the floor and screaming blue murder.
    Maybe you could make a visit to the school when there are no kids? I would be trying to get some video of her (taken either by you or someone at the school) of the times when she is coping/doing well/having fun at school. She needs to be able to see herself coping etc. If you can, make an edit to create a quick overview of the school day – getting up, getting dressed, getting in the car, arriving at the school, saying goodbye etc. If she is aurally sensitive, have you tried noise cancelling headphones or an ipod?
    Gotta go now, but I am sending those positive, you can DO IT thoughts your way.

    • ProfMomEsq says:

      I love this idea of a video. We tried social stories, but she was uninterested. She loves her iPad though, and I wonder if a combination of sound and video will help her. She really does love to watch video of herself (because she’s so humble …), so this may be a great idea. Thanks so much, my dear. You always have such marvelous suggestions!

      • I’m just happy there’s something that might, just maybe help a bit! They say that it doesn’t matter if there’s bits from different days, different clothes etc. just to show them doing something in the way you hope/want them to do it. You could add music that she likes etc.

  9. gkinnard says:

    I feel for you guys. It’s murder to endure a Monday through Friday fight & fear interaction with your child—especially one so young.

    For the most part school has gone extraordinarily well for our Sam. One exception involves a small, sweet boy Sam is terrified of. The boy has Cri du chat syndrome. The young man (same age as Sam) makes a cry/sound that Sam is terrified of. The sound the boy makes results in Sam either fleeing the classroom, or going after the boy to try to get him to stop. The child involved is less than 5’ tall; Sam is 6’ and 230lbs. Sam is scared to death of being in the same room, bus, or activity with this peer. Try as one might, there’s no way to completely avoid interaction—even though they’re both out of high school, they’re in the same 18-21 program. . . .

    I wonder if there is an option for Helene to go to another school—or possibly another classroom within the same school? I hope something about the school/classmate environment can be manipulated enough that she’ll grow to accept and enjoy school.

    I’ll be thinking about you guys.

    • ProfMomEsq says:

      Thanks, George. I feel for Sam; how scary and frustrating for them both! (Also, this is the first time I’ve ever heard of Cri du chat syndrome. Had to look that one up.)

      My gut tells me that changing schools won’t solve Helene’s problem. The question is whether she’s getting enough educational benefit from her classroom (despite the anxiety) to make it worth working through this. That’s not something I can really assess on my own; I need help from a developmental pediatrician and a therapist to interpret the source and best remedy for her anxiety.

      Yes, please keep us in your thoughts. In the meantime, we are going to do our best to enjoy these last two weeks of summer!

  10. Suzanne says:

    Oh Dear. As a public school teacher, I am opposed to homeschooling – I mean I need those kids to show up in my classroom so I have a job – and I know that I couldn’t do it myself. Wait. Scratch that, I know that I could do it if I had to, even if I personally feel like I would be awful at it. When my oldest (aspie) was in the 3rd or 4th grade, I remember having a meeting with the principal about something that wasn’t working for C, and she said “You can’t walk on eggshells around her forever. No one else will either.” And I thought, God, she’s a bitch…but then it sunk in…and from that moment on I tried to be a little less careful of orchestrating her environment. I wasn’t always successful, but what resulted is an ASD child who, like your daughter, does pretty well with loosey-goosey days, days without a schedule at all. Do you have a therapist that specializes in children with autism? There have been some pretty rocky times for my daughter and our family that we really needed an outsider to help us pinpoint the issues. Sometimes we could do it on our own (we’re a bit slow – we used to go to our local Pizza Hut all the time and she would PITCH A FIT – it wasn’t until our 25th visit that we realized the door squeaked…duh!), but with serious stuff like you mention in your post, we needed help.

    So as a public school teacher and a mom whose heart is breaking for you guys, home school her. Find a great local network for social interactions, co-teaching opportunities and field trips. I know you mention “the easy thing to do” and I assume you must mean that would be taking her out of the school she’s in and homeschooling, when actually I think that’s the hardest thing to do. Don’t label anything hard or easy, just label it what is right or wrong for your family, your daughter and you.

    • ProfMomEsq says:

      Thank you so much for this really thoughtful comment. I appreciate your insight. I absolutely know the “easy” thing ISN’T homeschooling Helene. The “easy” thing would be just to let her run the show. She’d gladly do it! 🙂 But, I also understand what you’re saying about labeling, and I agree. Thanks again.

  11. Heather says:

    I don’t have advice. I wish I did. I’m dreading the return of school for other (silly) reasons, but not because either of my kids doesn’t want to go.

    So, instead of advice, I give you support and an open ear. 🙂

  12. elaine4queen says:

    firstly, i don’t care what you write about, i like your writing so i’d read whatever you wrote.

    secondly, as a kid i hated school. i don’t think i am autistic, but i am socially awkward, and being at school didn’t really help with that. my strategy was just to survive, and i did that by staring out the window daydreaming. i could read before i went to school, so i came out of school with more or less what i went in with – english and art.

    i did go to art school, and then i did a post grad in cultural studies and taught for 12 years. i think i could have done all that without a day in school.

    i suppose what i am saying is that if she is stressed out, and since you certainly are, by SCHOOL and FRIENDS then why not see how else you could do things? i am certainly in no place to offer advise as such, but my only coda would be to say to build in some time to yourself in whatever you plan. there’s no point driving yourself into the ground, no one would benefit from that.

  13. Mama Meerkat says:

    I found you through Jill’s blog, and this reminds me so much of my daughter. She’s a bossy 3.5 year old who is very happy to putter at home or a couple safe zones does not want to go back to school. Her biggest objection is the other kids. She’s been saying she doesn’t want friends and just wants to play alone. We keep running into friends from her ESY class at one of her favorite places, and each time we see them she gets more upset. At first she ignored them, and now she starts scripting “I live alone!” over if they try to engage her. That doesn’t bode well for school starting back up.

It's boring when I do all the talking around here. Speak now, while you can get a word in edgewise.

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