This week I learned about a service run by a group of volunteers at BYU called Athletic Connection. Every Saturday morning during fall and winter semesters they have BYU athletes come meet with special needs kids for an hour. It sounded right up Wesley’s alley. Wes LOVES anything to do with balls. ANYTHING. He is always asking to watch football on TV (too bad the season is ended), or to re-watch the YouTube video I have of him bowling, and he loves shooting hoops and hitting baseballs. He has a good arm, and good aim, too.

I checked to see how old kids need to be and was told that they have kids as young as five and as old as 41. So I thought Wes, age 4.5, would do OK.

Today the BYU women’s soccer team was scheduled to be there. We showed up a few minutes late, but the team wasn’t there yet. There was a good group assembled, a mix of moms and their kids (all the special needs kids, as far as I could tell, had Down syndrome like Wes), the kids’ siblings, and BYU volunteers.

The volunteers did a great job with the kids (I use that term loosely; there were adults with Down syndrome present, too). When the soccer team didn’t come and didn’t come (they never showed up!) they got the kids involved in a game of duck duck goose. Wes was happy just running back and forth endlessly in the big gymnasium, but once the game got going he joined in. This video shows Wes just as the game is breaking up to start a new game of hide-and-go-seek, but Wes didn’t catch on that the game was ending and he merrily continued anyway. I’ve never seen him play duck duck goose. He says, “Duck, duck, duck, duck, DUCK!” and then runs. He can run around that circle forever!

After hide-and-go-seek ended they started football drills. Since the soccer team never showed, they called in back-up: the uncle of the one of the boys with Down syndrome. Vic So’oto played football at BYU and now plays NFL for the Green Bay Packers.

He was great with the kids. First he helped them do some warm up moves, involving high stepping…

…and then they did some stretches in a circle.

They lined up against the wall and started football drills.

They did some drills involving running from the wall, across the gym, around a person, and back to the wall.

Then they repeated the drill, only they had to shuffle sideways.

Yup. Wes had a good time.

Twice a year I’m supposed to get Wesley’s blood drawn to test his thyroid. Thyroid disorders are highly common among people with Down syndrome. They take one single blood draw and test for two things: Free T-4s and TSH.

The first time I had it done I was hit with a shocker bill: about $500.

Our insurance didn’t cover the tests, it turns out. I decided to only get his blood tested once a year, but the last time it was tested it came back inconclusive and they told me to go do it again. I just couldn’t bear to spend the money and didn’t think it was necessary.

Fast forward at least a year. Maybe two. How long has it been? I decided it was time to take the doctor’s order off my fridge and go get Wesley’s blood taken again.

But this time I used my head and called each lab in the area to see how prices compared. I learned this trick when I found out that the cost of prescription drugs can vary hugely among pharmacies, and if you’re paying for it out-of-pocket, it’s smart to call around first.

Turns out this was a good idea. I had been getting Wesley’s blood taken at the lab in the hospital that’s on our insurance plan. About $500, like I said. No discounts if you pay up front. The hospital that’s closer to us charged only about $150, and they give a 40% discount if you pay right away.

It cost $96 to get Wesley’s thyroid tests done. Still $$, but next to $500 I can’t complain.

So that’s one hurdle cleared. The other was handling both kids while a nurse stuck a needle in Wesley’s arm to draw blood. I knew that would not be fun.

I took the kids on Saturday. The lab was new and really nice. They had a spacious lobby with dozens of (empty) chairs and a three-story tall ceiling. Wes enjoyed running from one end of the lobby to the other (which ended in a set of closed doors). The receptionist waved her hand and said, “Oh, he can’t get past those doors.” I took that to mean, “They’re locked.”

Wrong. Wes trotted over and pushed the giant round handicap-access button, and suddenly he had a whole new long hallway to run down. Good thing I can sprint pretty fast.

Once I had him collected and it was our turn we met the nurse and her assistant. As soon as we walked back to the lab area both kids turned suspicious and started whining/crying. Kids are smart; they know when something’s up.

Both nurses were both very nice, which was a relief. Occasionally we’ve had nurses that are kind of abrupt with kids. The head nurse held up the rubber band for Wes to touch and told him she was going to put it on his arm like a bracelet. He was OK with that. I warned the nurse that he has small veins, since the last time I had his blood taken it took three tries in one arm and then another in his other arm before they got what they needed. (Which might be an unconscious reason why I postponed getting the test done again for so long.) But today Wesley’s veins looked great. “Anatomically correct” is what one of the nurses said.

I was told to hold Wesley’s left arm while they poked the right in case he tried to push the needle away. But Wes was as passive as a patient could get. He cried, but he never once tried to move his arm or struggle in any way. (I told this to John afterward, and he shook his head; we both want Wes to be LESS passive, so as to stand up for himself more. But it came in handy for getting his blood taken.)

As soon as the the blood was drawn (quick), the nurses opened the Prize Drawer and Wes got his very own balloon bouncer, and Carissa (who was crying when Wes cried) got a sucker and rubber ducky. And Wes additionally got a red bandage on his arm that he was very anxious to show Daddy when we got home. Overall, it couldn’t have gone better.

After that was over I took both kids to the BYU Bean Museum to see the (dead) animals. (I’ve always thought this place is kind of weird–dead, stuffed animals everywhere–and it smells funny, but the kids like it.)

Wes is making the sign for deer while saying, “Deeeeer!”

“Growl!” Both my kids can imitate a bear nicely.

There was a documentary about flying snakes and squirrels. Carissa is a TV junkie already.

Then we stopped at a bakery for a cupcake and ice cream.

Last week I took Wes and Carissa bowling. The second we entered the bowling alley, Wes went nuts. He knows about The Ball. And he LOVES rolling The Ball down the alley.

Cheering for himself.

He actually did pretty good. (Both scores are Wes, by the way. Carissa maybe touched the ball twice.) His best score was 96.

Maybe it’s my fault that whenever we near Costco’s parking lot Wes starts saying, “Ice cream! Ice cream!” I think he’s only had their $1.50 gelato cones three times, but I guess it’s made an impression.

The rule is, he gets the cone, Carissa gets a spoon.

Why you shouldn’t leave your kid unattended by the sink for very long:

We tried out a new jumping place that opened recently. It’s small (three bounce houses, one inflated slide, and a giant jumping pillow) but it was good for Wes. We went just as it opened. It wasn’t busy, and the kids who showed up were about his same age or younger. There were a couple balls he could play with. He went on everything, including the jumping pillow. He had a really good time.

Wes is so smart and loves counting. He can count to 20. Here he is counting to 16…

This week I got to sit down with Wesley’s preschool teacher and see how he’s doing. I don’t remember doing this last year, and I’m not sure why I didn’t. Parent-teacher conferences are optional unless your child is preparing to enter kindergarten, but I really wanted to talk with his teacher and know how he’s doing. I can tell Wes loves school and that he is progressing, but he can’t tell me what’s going on at school, and the pictures and crafts he brings home only say so much.

Wes is 4. It’s his second year of preschool and he has one more year to go after this. His birthday is right after the cut-off date for school, which is fine because I think he’ll benefit from being one of the oldest kids in his grade.

He attends a preschool at a nearby elementary school that is taught by a fantastic teacher who specializes in special ed. His classes are a mix of typical and and special needs kids.

First, his teacher gave me a sheet listing Wesley’s strengths and areas in need of more development:

STRENGTHS
* Names all colors and shapes
* Names all numeral and letters
* Counts 1-10
* Beginning cutting skills: snipping
* Beginning to trace his name
* Plays independently

NEEDS
* Tell personal info: full name, gender, age, parents’ full names, etc.
* Cut on a line and simple shape
* Write first name independently
* We are encouraging play and interaction with peers

Wes is doing so great with his letters, colors, shapes, and numbers. Every day in school they count one through twelve. I was surprised to learn that many kids can only count to five. His teacher said that sometimes if they’re counting and the kids are having trouble getting the numbers they’ll actually look to Wes because they know he knows his numbers.

I asked his teacher if she had ever heard Wes count to twenty. She said she hadn’t and was impressed that he can do it (although you have to use your imagination a little on the teen numbers…they all kind of sound the same when he says them).

Wes is always counting at home, everything he does. He’ll count out the crayons he’s putting away, or the light switches he’s turning off, or the blankets we pile on him at night. He loves to count.

He also loves his letters. Watching “Super Why!” on PBS helps. Every day at school they sing the alphabet song together, and his teacher said he belts it out. Wes loves the alphabet song.

I was watching videos of Wes from one year ago. He seems so different now. In the videos a year ago he used only a few words, like “no” and “more.” He used more signs. He even sounded more like a toddler than a boy. Now he is much more chatty and talks quite a lot. I have no idea what he’s talking about most of the time, but sometime I can pick out words I recognize.

Wes isn’t really conversational yet, but he is getting closer. You can ask him a question like, “Do you want more milk?” and he can say, “Yes” or “No.” This is great progress! He learned how to say “yes” and “no” sometime in the last year and it is so nice for me, because before I’d have to just guess. At school he learned how to say, “Hi” or “Hello” and “Bye, see you later!” It’s part of their routine when they get off the bus upon arrival and again as they load up to leave. I think it’s awesome to hear him come up to me and say, “Hi, Mom. How doin’?” I usually say, “I’m doing great! How are you doing?” He doesn’t say anything back yet, but maybe someday he will.

He is making phrases that resemble sentences, like “Issa seeping” (“Carrisa’s sleeping”). When he wants something he’ll still just use the single word: “Milk!” or “Pretzels!” We try to get him to say, “More milk, please” but he ends up just saying the last word we say: “Peese!”

I’m so happy he calls me Mom. It took a while; he probably started saying it sometime in the last year (Carissa is already calling me Mom, and she’s 16 months old). I try to remember how glad I am to hear it when he’s yelling at me from the other room to get my attention. My next big dream and hope: To hear him say, “I love you, Mom!”

His teacher asked me if I’d ever heard Wes say the Pledge of Allegiance. That one caught me off guard. No, I haven’t! She said that every day the kids stand, put their hand on their heart, and say the Pledge together. She’s been meaning to videotape it and send it to me, because apparently Wes does a really great job saying it! I’ll have to get us a flag so I can hear it in person at home.

We talked about how easy going Wesley is, and that sometimes that leads to being an easy target for bullying. His own sister beats up on him sometimes (hitting him) and he sits and takes it meekly. We’re trying to teach him to say, “No!” or “Stop!” or to run away, or something, and his teacher is doing the same at school. I think it will take some more time for him to get his self-defense skills more honed.

Wes is great at playing by himself. They want him to interact more with his peers. Right now he’s just starting what they call parallel play–he’ll take a toy and sit near another child, still playing independently but doing it next to someone else. So that’s progress.

His teacher said Wes likes to throw toys. I just laughed. (If you’ve met Wes, you know this about him.) He doesn’t throw them at people. He just likes to toss. She said that sometimes he’ll take a bin of toys and sit down with it, and she’ll look at him and say, “Now, don’t throw those toys, Wes.” Wes clearly understands what she’s saying and looks very humble. And then when she’s not looking he’ll carefully scoot around the corner where she can’t see him, and then she’ll hear the sound of toys being thrown. Sneaky kid. Does the same thing at home.

Wes loves singing time. He loves music, and lately I’ve noticed him actually singing along to songs. This is great progress! He used to just listen because he didn’t even talk much. Then after a while he started to repeat the last word of a phrase along with you as you sang. Now I’m noticing him in church singing along with hymns, even drawing out the sounds of words long when we’re holding a note. He’ll also kind of “scat” to instrumental songs–go “bah, bah, da dum” or something along with the sound of the music.

His teacher knows he loves music, too, because when they’re taking turns picking songs for singing time at school, if he’s not called on pretty quickly for a turn, he’ll point at himself and say, “WESLEY!” and then jump up to take his turn. His teacher will ask him to sit down, have quiet lips (he puts his finger over his lips), and to raise his hand. And THEN he gets his turn.

Wes is doing well overall. We can’t complain. His teacher loves him and he feels safe and welcomed at school. There was a period a while ago when Wes cried and didn’t want to get on the bus when it was time for school. It was weird. I thought maybe he was sick or something. After talking to his teacher I realized that this probably happened when there was a substitute filling in for his teacher, and her aides reported that the sub was pretty ornery with the kids. They told her that Wes, in particular, didn’t do well with the substitute. His teacher, to her credit, got that sub blacklisted from her classroom and is no longer allowed to teach her kids.

The teacher is a huge factor that determines whether a kid loves school, likes it, tolerates it, or hates it. We talked a little about Wesley’s future schooling experience. It will be different after preschool. He’ll probably be in a regular classroom with 25+ other kids. He’s so easy-going that both his teacher and I can see him getting lost in the shuffle easily. We’ll cross that bridge later, I guess. I hope he will always be in a good, safe, loving environment so he will like school and love learning. For now he is having a prime experience in school, and I am so glad.