Well, folks, we have a kindergartner among us. Young Theodore has officially left the protected world of preschool and entered the big, wide world of kindergarten! And I’m pleased as punch to say that overall, it’s going very well! In typical Theo fashion, he did not enter this brave new world quietly. No, instead, at our meet-and-greet on Tuesday, he strolled up to a group of his classmates and their parents and loudly announced, “Well, these kids might not like to drink wine, but I do!” No, I have no idea why he said that, and yes, I am now that mother—the one whose kid claims to have a taste for alcohol. Good lord, Theo!! I think my face turned as red as a nice merlot. 😉
Wednesday was his official first day of school, and Chris had the day off so we were all able to go for drop-off. Theo was nervous on the way there—he didn’t say so, but he talked incessantly, in a stream-of-consciousness babble about everything and nothing, which is a sure sign he’s nervous. But he did great—no tears from him or Mama. (Okay, I felt the sting in my eyes as he marched into his classroom with the other kids, but I valiantly held them back!)
All seems to be going well. Theo won’t tell Chris or me what he does at school, but he will tell Grandma Kathy, in a daily 5:00 phone call. So we try, during the afternoon, to get out of him what he did at school, but he just changes the subject. And eventually, at 5 p.m., we eavesdrop on his call to Grandma Kathy and hear that he listened to a David book, listened to the story of Goldilocks, built a “huge hotel with four elevators—two to go up and two to go down—out of blocks,” had a snack at recess, has a friend named Noah who cries when his mom leaves, and on and on. Not sure what magic Grandma Kathy possesses that makes her worthy of hearing about his day when we aren’t, but we’ll take it!
Theo talks a mile a minute before school and all afternoon afterward, and I have a hunch that he’s working so hard to be quiet during class that it all comes pouring out afterward…for hours. Ha! He did ask me, “Why do I have to turn my voice off in kindergarten? At preschool I could talk all day, all day!” I have a hunch the teacher must ask the kids (and perhaps Theo in particular) to “turn your voice off” when they are supposed to be working quietly. I suspect that and sitting in his chair will be the biggest challenges for my talkative, always-in-motion little boy.
I got a great surprise when I went to pick up Theo on Friday. His teacher, Mrs. Jacobson, asked me to stay behind after class so she could talk to me about a couple of things. In the past, this has never been a good sign, so I was rather nervous. But it turned out to be a minor housekeeping issue (Theo’s beloved belt clip is distracting him, so she asked me to have him leave it at home) and…get ready for it!!…a suggestion that we drop Theo’s shadow aide for the time being!
Let me explain… As part of Theo’s IEP, he was assigned a shadow aide for his transition from special ed into mainstream kindergarten. This aide (I think her name was Diane, if I recall) would be in the classroom to help Theo manage the transitions and essentially “learn the ropes” of kindergarten. Transitions have always been a real challenge for Theo, so the district felt that having someone help him learn the routines and expectations of kindergarten would smooth the transition into mainstream kindergarten and help set him up for success. However, Diane was known as a “shadow aide” because no one except the teacher—not even Theo—would know she was there specifically for Theo. Instead, she would be introduced as a “class aide,” and when Theo wasn’t requiring assistance, she’d be helping out with the other kids, helping the teacher, etc.
I liked this idea because it didn’t set Theo apart as the “weird kid who needs an aide”—even in his own mind, because he didn’t know she was there for him! In his mind, all he knew was that Diane (who he knew from his social-skills class) was helping out in his classroom. Cool.
But it turns out that Diane and Mrs. Jacobson both felt, after the first three days, that Theo was adjusting so well that he didn’t need the assistance! Mrs. Jacobson told me, “He’s doing great! He’s struggling a bit with standing in line and with using a loud voice in class, but we’re working on that, and it’s not anything big that requires an aide.” In fact, she said, his ability to stay in line with his classmates had already improved exponentially in just his first three days! And she seemed completely unconcerned about the loud voice in class—said they’d just keep working on it on their own. So, Diane is, for the moment, phased out—and waiting in the wings just in case Theo starts to backslide after the initial “I’m in a new place, so I’m on my best behavior” phase is over. We are so proud of him—and I was delighted to hear how well he’s doing!
And even though Theo won’t tell Chris or me what he does in school, he has said several times that he “loves” Mrs. Jacobson and Miss Kathy (a grandparent aide who helped out in class the first day).
As for my impressions, I’m feeling very optimistic about his school and teacher! It’s a beast to get there in the mornings—it’s eight miles from our house, but it takes me about 45 minutes, due to traffic. However, I think it’s going to be well worth it. I actually talked to a couple of parents who bring their (older) kids from farther away, and they both said the program is totally worth the long drive. Our school district has done away with gifted programs (as most districts in this part of CA have, unfortunately), but this school is as close to a gifted program as you’ll find in a public school around here, I think. It’s a district program and considered a public school within the district, but it’s structured a bit differently from the rest of the public schools. Our district offers four such “different” schools—two are for parents who want rigid academics for their kids, one is for parents who want a lot of arts and crafts for their kids, and then there’s ours. Our little school is called an “enrichment program” with “parent participation.” That means two things: First, it’s like a co-op. Parents have to volunteer in the program. That said, there are numerous volunteer opportunities and a lot of flexibility in when/how you volunteer, so it’s not as daunting as it sounds if you’re trying to balance, say, work and two kids. 😉 Second, the “enrichment” part means that in addition to all of the standard public-school curriculum, our school offers enrichment in the form of additional field trips (most of the public schools do one or two a year, and I think ours tries to do six or eight) and enrichment activities every Friday. The enrichment activities depend on the parents’ strengths for that year, since parent participation is a big part of what enables the school to offer this component. So this year, the first Friday of the month is art day—they do art enrichment. The second Friday of the month is science day—they’ll do all sorts of science activities and experiments. The third Friday is team sports day—they’ll learn about and participate in different team sports. And the fourth Friday is cultural cooking day—they’ll do a cooking project related to a different culture’s cuisine each month. I think these extra enrichment activities are going to make things a lot of fun for the kids!
The other bonus to the program is that it’s very, very small: There are only 10 kids in the class. It’s a combo K/1 class, so there are 10 kids in kindergarten and 10 first graders. But that’s still only 20 kids in the classroom, as opposed to the 32 in the regular kindergarten classrooms in our district. Whew—much better numbers for a kid like Theo, who gets overwhelmed in large groups.
I really like what I’ve seen of Mrs. Jacobson, too. She is friendly and very down-to-earth and warm with the kids, but she also appears to take no crap. And that’s a good thing, because Theo likes to dish out crap whenever possible. 😉 I overheard her handling a disagreement between two kids on the playground, and I really liked the way she handled it. I’m very impressed so far—and feeling very optimistic!
I’ve also had a chance to meet several of the other parents, who seem like really nice people. I’m hoping to gain some new friends from this group!
So, it’s all good…so far! Fingers crossed that it stays that way….
Aside from kindergarten, what did we do this week? Played with Gavin…a lot! His mom was off work for a few days this week, so Courtney and I got the boys together several times. We met up for burgers after the first day of kindergarten, and then they came over to the house for a couple of hours. (Gavin goes to a different school from Theo, unfortunately, but it does happen to be quite close to our house, which is nice for play dates!) Then we met again on Friday for an afterschool park date—and Slurpees, because it was beastly hot out! I don’t think I’ve had a Slurpee in about 20 years, but man it tasted good! I may be hooked…. 🙂 And last but not least, Gavin and his parents came over Sunday for a swimming date. So Theo and Gavin got to see each other a lot this week, much to Theo’s delight. He has informed me that he “would like to play with Gavin every day…but sometimes I have to do other things, instead.” He’s pretty much decided Gavin will be moving into our house with him. 😉
On Saturday, we went up to Elk Grove to see Grandma Diane. We went out for burgers (are you sensing a theme? Lots of burgers! But I can generally eat them without getting sick, so I’m all about burgers!) and then hit a local park that has a huge sprayground, because it was really hot. As it turns out, Theo took several passes through the sprayground but was more interested in playing on the playground and with the exercise equipment at the park, so I broiled in the sun while he played. But it’s all good—I sent Chris and Sam off to air-conditioned Nugget (Chris’s favorite grocery store in the whole world) while Grandma Diane and I stayed and broiled with Theo. Chris was happy and content that he got to hang out in his favorite place—ha!
And that pretty much sums up our week! I’m diving back into work (blah!) as is Chris, so real life is returning. And I’m working on our team T-shirts for the Step Up for Down Syndrome walk. I was trying to find a quote to use on the shirt, and I came across one from actress Patricia Heaton that really bugs me: “It’s hard enough to work and raise a family when your kids are all healthy and relatively normal, but when you add on some kind of disability or disease, it can just be such a burden.”
Now, let me say that I don’t know what context she said this in—I only saw the quote out of context and couldn’t find where she originally said it. And I happen to agree that trying to work and raise a family is tough. But the burden part really bugs me. Here’s why: I know we are very, very lucky because Sam is healthy, and although he is delayed, he is progressing and will continue to progress. I know it is a different story for every family who has a loved one with a disease or disability. I won’t pretend that our reality is the same as any other family’s. But I worry about what someone who is in the process of building their family thinks when they read/hear a quote like this. I mean, imagine if you’re a young mother, starting to have kids, and this is the message you hear—that disability is “such a burden.” And naturally, you probably think that is indeed the case—because if you’re on the outside looking in, that would appear to be the case, right? Before we had kids, didn’t almost all of us look at families with a child with a disability and think, “Oh boy, I hope that never happens to me! I don’t think I could handle it.” And then, what if you get a prenatal test result that says your child is likely to be born with a disability? As that young mother, who has read and heard things like this, about disability being a “burden,” you probably wonder if you can handle it. And maybe, if you’re like a lot of people in that situation, you decide you probably can’t handle it. And maybe you choose to end the pregnancy. Or you keep going, but you feel incredibly depressed and disheartened about your fate, and about this “burden” you’re carrying. How sad…how very, very sad to be faced with negative thoughts and emotions about a situation that may not be anywhere near the “burden” you hear it’s going to be.
So let me say this, on the record, though all of you who know me already know how I feel: Sam is not the least bit of a burden on our family. On the contrary, he’s an absolute joy to the three of us—and to people outside of our little core. He’s fun and sweet and smart and funny…I could go on and on. And I wish people would hear more about that side of the “disability” equation—more about that it’s not necessarily a burden and can be a real blessing. I think some believe that those of us parenting kids with special needs put on a good face and spout “blessing not a burden” because it’s what we should do, but for any lurker reading this blog who doesn’t know me personally, let me tell you that I never say things because I should say them—I speak from my heart and my mind. In our house, in our family, Sam’s “disability” isn’t a burden. I’m not saying disability is never a burden, because every situation is different and I can’t know the particulars of each family’s situation. But I am saying that you can have a child with a “disability” and not have that child, or his/her disability, be a burden in the least.
Now, dealing with insurance companies and state services and such…well, that can be a burden. But not the child himself, and not his disability. At least not in a case like ours.
Anyway, this is one of my soapboxes: the fact that the community at large presents a lot of negative information about Down syndrome but not the positive. And specifically, the medical community can be very guilty of this, with an attitude of “your baby will be born with Down syndrome—when would you like to schedule your abortion?” So what am I doing about it, other than expressing my views on this blog? I’m getting involved with a group through Down Syndrome Connection that is going to provide outreach to local medical communities about Down syndrome, in an effort to get them to present parents with a prenatal diagnosis with all the information about Down syndrome, and not just the potential negatives. We have our first meeting later this month. Don’t ask me how I’m going to fit this into my already crammed schedule, but I’m going to do it…because it’s incredibly important to me. 🙂 I’m all about giving people the information to make informed decisions, and that isn’t currently happening in the medical community. I want to be part of helping to change that.
With that, I will segue into a reminder about our Step Up for Down Syndrome walk, which benefits the Down Syndrome Connection and programs like the one I’m going to be a part of. If you wish to donate, click here. And if you wish to walk with us, I’ll get you a nifty shirt like this!:
To end on a happy note, in my search for quotes for the shirt, I did find a few positive ones I liked, including “The only disability in life is a bad attitude” (Scott Hamilton) and “We, the ones who are challenged, need to be heard. To be seen not as a disability, but as a person who has and will continue to bloom” (Robert Hensel). But ultimately, Chris and I decided that our team slogan this year will be one I came up with: “Super Sam: Inspiring Smiles Since 2012!” Because yeah…he really, really does. 🙂