Jan 11, 2015: It’s My Party and I’ll Cry if I Want To!

Well, it wasn’t the worst birthday I’ve ever had—that distinction goes to my sixth birthday, which I spent vomiting and lying in a stupor on the couch, unable to keep down even water. But this birthday—my 41st—runs a close second in terms of crappiness.

I had been a little down in the dumps in the middle of the week for no particular reason. Those crazy menopausal hormones aren’t always my friend, and occasionally I have days where I cry at the drop of a hat. Wednesday was one of those days, and it wasn’t helped when I posted a note on our local “treasures” Facebook page, asking if anyone had any old art supplies they wanted to donate to my Odyssey of the Mind team, and some woman sent me a message saying basically that by doing this, I was essentially cheating. She meant well (she’s a fellow coach for a different age group and wanted to make sure I understood the rules), but I felt frustrated and disheartened. I am really sensitive to being accused of cheating, because honesty and integrity are very important to me! Plus, waaaaay back when, in high school, one of my best friends and I got accused of cheating when we hadn’t done so, and I’m still touchy about the subject. I mean, it’s laughable because it was such a completely ridiculous situation in high school, but all the same, I did not like being accused of cheating back then, and I don’t like it much better now…even though I know the woman meant no harm.

In case you’re wondering how one “cheats” in Odyssey of the Mind, here’s the story: As I’ve mentioned, the project is entirely done by the kids. As the coach, I’m really only there to drive them places if need be and to make sure they don’t hurt themselves in creating their projects. But I have a very young team—in fact, the youngest team in our school. We have two kindergartners, two first graders (one of which is my kiddo, and he’s not the most mature first-grader on the face of the earth), and two second-graders. They’re tasked with creating a weather map, a weather forecasting device, and a device that viewers can tune into the weather on. Lots of fun, but when I brought this up to them at the last meeting and said, “Let’s start thinking about the map! What do you think you’d like to use to create it?” I was met with blank stares. They had no idea how to begin, and given their ages and the fact that they haven’t yet really had to do big projects in school, I wasn’t overly surprised.

So I had this idea that I’d just gather a bunch of random supplies that people weren’t using—paints, paper, Styrofoam, cardboard, egg cartons, old paper towel rolls, or just anything that had been gathering dust and people wanted to get rid of—and I’d put those in a pile in our garage and say, “If you want to make use of any of this stuff, go to it.”

But apparently that’s cheating. Apparently that is me “helping” the kids. Even if I don’t tell them to use the materials, just by putting them someplace and pointing out that they’re available, I’m helping the kids.

So…feeling frustrated and disheartened, I was back to square one. With a team that had no idea where and how to start, and with no way to even give them a tiny spark of inspiration. I had a “this coaching gig is more trouble than it’s worth!” tantrum to Chris, and then went to bed, figuring that I’d wake up Thursday feeling much better, because, you know, it was my birthday, and I do love my birthday!

Well, Thursday morning wasn’t overly stellar, as I spent much of it filling out autism questionnaires for Theo’s upcoming autism reassessment. Never a particularly fun task. But I had a lunch date with one of my best friends to look forward to! And indeed, that did end up being one of the high points of an otherwise lousy day. I met Jeanette at the Cheesecake Factory, and we split a few yummy small plates and a piece of chocolate fudge peanut butter cup cheesecake. To die for!

Then I picked Sam up, dropped him off at home for a nap (Chris was working at home), and went to pick up Theo, figuring I’d take him to wander the craft store in case Odyssey inspiration struck. (Which is probably cheating too, but good heavens, we have to start somewhere!) While I was sitting in the car waiting for it to be time to go pick him up at his classroom, I got a phone call from the executive director of Sam’s Early Intervention program. I’ve never met him before, but I’ve been told that Sam kind of melts his businesslike exterior. He he he…little kiddo has that effect on people! Anyway, Pete started out the call by saying, “I feel like I’ve met you, but I’m not sure. But regardless, I should probably actually be paying you a cut of all of the money Sam brings in for us! I bring people through to show them the facility, and Sam runs over to greet them, and they immediately write a check for a thousand dollars. It’s amazing!” He was sort of joking, of course, but it was nice to hear that my little charmer makes such a good impression. 🙂

Anyway, Pete wanted to know if I’d mind if he took some pictures of Sam to use for an interview he’s doing with our local Fox affiliate station. I said I didn’t mind at all, so if you’re in the Bay Area and you watch whatever Fox’s Saturday morning local newsy-type show is, you might see Sam there in a few weeks! So that was kind of flattering and neat—I love it when people are proud of Sam, you know?

So I went to Theo’s class feeling as if the day was perking up. I collected Theo, and we headed over to the shopping center near our house to make copies of the zillion pages of questionnaires I had filled out that morning so we could get it all sent off. While we were there, I got a Facebook message from the woman who was supposed to be Sam’s preschool teacher starting in three weeks. She apologized and said she wasn’t going to be able to have Sam at her school after all. She was dealing with a particularly difficult infant and she “just wouldn’t be able to give him the time and attention he needs and deserves.”

I was floored…and here’s why. When I first met with this woman, she was quiet but friendly, and she warmed very quickly to Sam and he to her. She was the first preschool I visited, and I was honest about the fact that I was checking out several. We left on good terms, and in fact she insisted on giving Sam a hug when we left. I felt like she really liked him, and I liked the preschool environment. Plus, she had come highly recommended by two of Sam’s therapists, who work with another child in her program (who has some mild delays as a result of being a twin/preemie).

I talked to some other programs and did some more visiting and looking around, and in the end I decided I liked the first program best. It seemed to fit exactly what we wanted. So I called the woman (we’ll call her L) back and said we’d like to have Sam start with her in mid-February, after he ages out of Early Intervention. She said great, and that she currently had two spots in her program open, and she’d call me if it looked like they might fill up. Otherwise, we’d talk in January about doing the enrollment paperwork.

The day after Christmas, she called me and said she had people interested in the spots. She kind of hemmed and hawed, and I couldn’t figure out what exactly she wanted from me. She finally asked if I could fill out the enrollment paperwork then, even though he wouldn’t be starting until mid-February. I said I needed to check with our attorney (everything has to be done very precisely and on a particular schedule because we are likely taking the school district to court), but that I would call her back ASAP with an answer.

I called the attorney, who was working that day, and she confirmed that I could indeed fill out the paperwork—I just couldn’t have him physically start her program until mid-February (10 days after the “unsatisfactory IEP,” which is scheduled for January 27th). So I called L back within the hour and left a message that yes, I could do the paperwork, and I’d be happy to do so, because I was certain I wanted Sam to be in her program come February.

And then I waited. And waited. And waited. And waited some more. And I never got a call back. One of my big flaws is that I hate talking on the phone, so I put off calling her back. I figured since it was the Christmas holidays, perhaps she was taking time off. But when I still hadn’t gotten a call by January 7th, I called her again. I told her I was following up, and when would she like me to do the paperwork? She replied that she felt she couldn’t keep holding the spots open, as she had been under-enrolled since August…and she hemmed and hawed.

Chris and I had already spoken privately and agreed that if we had to, we’d pay out of pocket for the January to mid-February tuition, which would run about $1,200, because we did not want to lose the spot. That money wouldn’t be reimbursable by the school district, because Sam wouldn’t be attending the school yet, but it was worth it to us to keep the spot. The program seemed perfect for Sam, and it was very close to Theo’s school and to our house.

So I assumed L’s hemming and hawing about holding the spot open had to do with tuition. She kept mentioning being under-enrolled, and if she had people wanting the spot immediately, obviously that would mean immediate money…versus holding a spot for Sam and bringing in no money for it. So I offered to pay the tuition to hold the spot open. She immediately replied, “Oh, I hate to ask you to do that…” and I assured her that I knew she was just trying to run a business, like the rest of us, and it wasn’t a problem—more than anything, we just wanted to ensure that he’d have a spot. She said, “Okay, well then, I’ll get the paperwork together tomorrow and call you.”

“Tomorrow” would be Thursday—my birthday—and I was planning to take the day off, so that was perfect. I could drop by and sign the paperwork and drop off a check any time.

But I couldn’t shake the feeling that something was up. In fact, I started to cry when I hung up the phone, and I told Chris what had happened and that I somehow felt like she was trying to get out of having Sam in her program. He said he didn’t think so—that it sounded like it was just a money issue. She’d been short money for a few months with the under-enrollment, so it was probably hard for her to turn down guaranteed income from an immediate enrollment in favor of a kid who was supposed to start in mid-February. And that did seem sensible—and in fact my Mom thought the same thing when I told her about it. So I convinced myself that I was just being silly and overly protective of Sam—imagining rejection where there was none.

And then Thursday came, and I got the email claiming that she had a difficult infant and thus couldn’t give Sam the time and attention he needed and deserved.

Um…as my dad would say, “Bullshit.” Complete, utter bullshit. She never once mentioned a difficult infant to me—never once! It was always just about under-enrollment and someone else wanting the spot. And then when I offered a solution, she came up with the “difficult infant” story. And this woman has had her preschool/daycare for something like 20 years—I’m sure that if she does have a difficult infant, it’s certainly not the first one. And because she is a daycare, she has a number of infants/toddlers, as well as the preschoolers. So I find it very hard to believe that suddenly she’s just overwhelmed with the infant and can’t take Sam.

When I wrote back to her later that night, one of the things I told her was that she should’ve asked me what Sam’s “needs” were, rather than just assuming they were something above and beyond what any toddler needs. Her note to me implied that she felt Sam would require a lot of attention, and in reality the exact opposite is true. Here’s what Down syndrome looks like in Sam: He’s about to turn three years old, but he is at the developmental level of about a typical two-year-old. So he may be three years old, but he’s doing everything a two-year-old does: learning to talk; learning to run; learning to do self-care routines; learning to potty; learning his colors, numbers, and letters; and so on. He is pretty much no different from a typical two-year-old…except that chronologically he’s three. And in fact, he’s actually easier than most typical two-year-olds, because his personality is pretty laidback and easygoing. Really, he’s a teacher’s dream, which is probably why his teachers at EI tear up every time they talk about him leaving in three weeks!

But L never gave me a chance to tell her any of that. Instead, she just made an assumption about his abilities and the level of care he would need based solely on his diagnosis. And that made me incredibly angry and also incredibly hurt. It made me angry because no one should be judged simply by a diagnosis. And I was also angry because she didn’t have the courtesy to call me, or to give me any sort of heads up about this supposedly “difficult” infant when I called her—instead, she just sent me a Facebook message a mere three weeks before he ages out of Early Intervention, which leaves me in a very difficult situation. It’s already hard enough to find a preschool with an opening mid-year; it’s even harder when I have to find one that is willing to take a child who is designated as “special needs.” And simply having him wait until September and the next school year to start isn’t a good option, because it means he’s without a program for six months, and the progress he’s made may be set back.

But aside from all of that, I was hurt because my precious little boy was being judged based on his diagnosis. The very same thing that made me angry also made me hurt. Sam doesn’t deserve to have his capability judged by someone who hasn’t even taken the time to get to know him—he deserves a thousand times better than that, because he gives a thousand times better than that in return. Sam accepts and loves everyone, and to have someone dismiss him simply because he has an extra chromosome…well, it hurt. It’s not like I didn’t know it would happen someday—it already has before, and I know it will again. But it doesn’t mean it hurt any less.

I managed to hold it together for an hour, because right before I got the message, a couple of the Odyssey of the Mind parents had spied me and Theo in the copy center and insisted that we join them for an after-school snack at the restaurant next door, since it was my birthday. And I knew Theo would love it, and I really like the mothers, so I agreed. But it took all I could do not to just break down and cry right there in the restaurant. Instead, I held it together, had a nice time with the ladies while purposely not thinking about it…and then drove home and completely fell apart.

Honestly, the day was ruined for me. I cried on and off for the rest of the day—tears of anger but also tears of hurt. And I was worried, too—would I be able to find anything for him with this short of notice? And every time I looked at my sweet-faced little boy, so innocently happy and unaware that he had just been negatively judged by no fault of his own, I’d start crying all over again. By the time evening came, I had a wretched headache from all of the crying.

I know, I know—I need to toughen up. But I spend a lot of time being tough, and everyone’s allowed to fall apart now and then. I just ended up doing it on my damn birthday…thanks to L, who reminded me of the way so many people see those with disabilities. I exist in this nice little cocoon of people who love Sam and see him as every bit as terrific as his big brother and everyone else…and then sometimes I step outside that cocoon and get sucker-punched. Such is life, I guess. But I don’t really like that part of it.

Anyway, I pulled myself together so I could watch Sam while Chris took Theo to Cub Scouts (where my elder was awarded his very first badge, the Bobcat badge!), and when all was said and done, my birthday dinner was an egg sandwich made by a sweet hubby, plus a chocolate-peanut butter Cold Stone ice cream bought earlier in the day. A good way to end a crappy day….

The story has a decent ending, I think. I spent Friday morning calling every preschool I could find in the area, and I found four possibilities. They require a fair bit of driving, which I’m not thrilled about—we switched Theo’s school in part to avoid commuting, and now I’ll be back to commuting in the godawful morning traffic. UGH! But at this point, I have very few options. Sigh…

And because my birthday was an epic fail, I decided that this year, instead of January 8th, my birthday was January 10th. Which is the day we dropped the boys at Auntie Lynnie’s house and had a lovely date afternoon/evening consisting of a little antiquing, some bowling, some video games (I remain undefeated at air hockey—woohoo!), and a delicious sushi dinner. Now that’s a birthday! No tears and no shitty people making judgments about what my son can and cannot do based on his chromosome count!

Anyway! I’ve rambled long enough. Pictures…enjoy! 🙂

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