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.
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.