Friday, April 25, 2008

A Different Kind of Soccer Mom

This isn't about the traditional soccer mom, or even the non-competitive soccer mom, as I see myself. It's just about a mom who brought her son to Harrison's soccer class last week, and returned this week.

We were excited to see another child, Harrison and I. I was hoping she wouldn't be a camcorder-wielding crazy, which was fortunately the case. Unfortunately, her child was the one whose behavior had me worried.

I was worried because I saw AUTISM written all over the situation. The mom introduced herself in broken English (she's Chinese, and is still learning English, but did very well) and asked about Harrison and told me about her son, who is 3. She told me her son didn't really understand English, and that he'd been kicked out of the preschool class he was in. I watched him on the field, thinking at first, "Well, if he doesn't understand English, how can he be expected to participate in preschool? Why would they kick him out?" But as I watched him, I saw Hutton's behavior from three years ago. Not paying attention to the teacher or Harrison, or even looking at them when they talked. Running around instead of sitting in the middle when the teacher showed him how and where to sit. Not participating in any of the activities the teacher and Harrison did, but running around or throwing things instead, screaming randomly.

I started trying to talk to the mom about school, and mentioned that there are special preschools where her son could get speech help. I didn't want to come right out and tell her I thought her son had autism, but I mentioned Hutton and how he had attended a special preschool which offered him speech therapy. I found out where the mom lived, and unfortunately she is not in our school district, so I couldn't tell her, "Go here. Talk to this person. They'll help you." And since her son is three, the early intervention program won't cover him, though I did mention it and she wrote it down when I told her they would have some ideas of preschools for her son. I go her name and number, and figured I could ask other Autism mom friends where kids go for special education preschool in her district.

The situation is even harder because of the limited English the mom speaks, as well as my not knowing any Chinese. Wait, I know a few phrases I learned from my best friend in high school: Woo ya se fain (I'm hungry); Woo ya nuau-nuau (I need to pee); woo ya dabien (I need to poop). Yes, those are spelled incorrectly. And they're not exactly going to help me converse with this mother about her son's possible Autism diagnosis.

At the last class, I asked her about preschools, and she said her son is signed up next fall at a co-op preschool. She liked that it goes at the individual speed of each child, and I nodded, thinking that did sound good. She said they didn't recommend starting school in the middle of the term. I nodded, but thought, "Wow, five months without school." I reminded myself to call my friend who lives in the same town as the mom and find out about special education so maybe she can get help before summer. (I had called another friend, but she's not in the same school district, even though technically she lives in the same town. Confusing stuff.) And then I have a Chinese friend who lives in a different school district too, but at least speaks Chinese and can maybe talk to this mom about Autism and being new to the area.

During class, I noticed more autistic behaviors, and felt bad for the other mom when her son knocked Harrison down at one point. That's not something you normally feel when it's a neurotypical kid, believe me! ("Man, that kid just grabbed my child by the neck and pulled him down. That poor mother!") When you have a feeling Autism is involved, on the other hand, and you've been the mom apologizing for your child's behavior, it's much easier to put yourself in someone else's shoes. The mom had her son apologize to Harrison which was very nice. The class instructor seemed very frustrated with the situation, however.

Sigh. This very nice woman is new to the area, is still learning English, and has a three-year-old who very possibly has a life-long disability, and it's hard enough to figure out services when you are a life-long English speaker. At least she'll have good insurance, as her husband works for a certain large software company out here. We do have that in common!

Saturday, April 19, 2008

The Ides of April

Geez, is the month already half over? How did that happen?

I went to Philadelphia last Thursday to see my college girlfriends. The seven of us took over K's townhouse and kept her husband sufficiently annoyed, I'm sure. He stayed in his office on the third floor most of the time we were there. Also, since there was only one bathroom and all of us glorious women, three of whom were also gloriously pregnant, things got a little crazy, and I'm sure K's husband was rethinking saying yes to letting us all stay there!

We did stay, though. And baked. The first day, A made some lovely lemon cakes and buttercream frosting. JS and I frosted the cakes for our Friday afternoon baby shower activities. JS's was a ducky on blue frosting; mine was a frog (my favorite!) on pink frosting. Good stuff. We did iron-on onesies with some cool images D found and printed. Then we played some baby shower games that JD thought up, and they were sufficiently challenging, but not so much that the never pregnant among us (still two of them!) couldn't play, too. I won, because I'm awesome. Well, my teammates helped on the first game we won (a password type game involving baby words), but my second win, on the word scramble, was all me. The three pregnant ladies opened their gifts, then we took the beautiful singing plastic travel mug I won for my hard work in the baby shower games, and we walked to a coffee house nearby so I could annoy all in my surroundings with the mug. Really, it only plays just enough of the song ("Don't Worry, Be Happy!") to be barely annoying. The song is fitting, since JD sang in an a capella group in college. And it does cheer me up, because if nothing else, at least I don't have a landlord kicking me out of my home and I have a bed. (Seriously, if I were in the same situation as the person Bobby McFerrin is singing to, it would be a wonder I hadn't found a loaded gun already. But, then again, "when you worry, your face will frown, and that will bring everybody down!" Don't want that to happen! It's all about you, worrier, isn't it? How selfish of you to be frowning about not having any money, love, or a bed. You're bringing us happy people down!)

Anyway, after our coffee trip, we rested a bit, then got ready for dinner out. We walked to a tapas restaurant (visiting friends who live within walking distance of restaurants is always fun for those of us who live in the suburbs, or in sub-suburbs, in my case) and had a wonderful dinner and sangria. Well, the non-pregnant ones got sangria. The four of us were not very thoughtful in that we still drank even though our friends couldn't.

Saturday, we headed to the Philadelphia Art Museum in the minivan D rented for the weekend. Some of us ran to the top of the steps, ala Rocky. Then, we waited in a long line to get into the Frida Kahlo exhibit, which was very crowded, but still very much worthwhile.

I love seeing art in person that I've seen in books. Seeing "The Two Fridas" in front of me was amazing. I had never realized how big it was. The exhibit didn't include several of Kahlo's well-known works, and didn't have my favorite work of Frida's from the modern art class I took in college: What the Water Gave Me. It did have many works I had forgotten about that were wonderful to see, in that "Geez, that is sad!" sort of way, like The Broken Column and Henry Ford Hospital. (You'll have to Google those. I'm lazy and need to take a shower now!).

Off to shower. I'll post more later.

I'm back. It's now Sunday. It's snowing. Big, giant, fluffy flakes. It's been snowing/sleeting off and on the past three days. I would have really loved this snow in November, December, January, heck, even February. It snowed a little in March. That was fine. But come on, Weather Gods! It's APRIL! April SHOWERS bring May flowers. Remember that little rhyme? It wasn't April SNOW showers. Come on! The boys and I are signed up to go on a little sailing day trip Thursday afternoon. When I signed up for the late April date last month I wasn't thinking it would be freezing cold. Well, it's not quite freezing, at the very least. The snow is slowly melting after it hits all my pretty green plants and new flowers. We'll see what survives.

So, back to my trip. Saturday afternoon we did the fabulous "Bachelorette Party" part of our weekend (the original sole purpose of getting together in spring to celebrate, until all the friends started getting knocked up!). JD opened gifts and played Madlibs -- yes, we still do that. There was a great catch-phrase we were saying all night from the Madlibs, but of course I forgot it. We also did the pre-wedding game of the Newlywed Game, which we've done with each bride-to-be since I married back in 1997. One of the friends calls the groom-to-be and asks assorted questions about the bride and their relationship, and then we ask the bride-to-be the questions in person. It's fun and you get to know more about the groom, which is nice, since most of us don't really know each others husbands as well as we know each other. After games, we went to dinner, and then had a lovely time in a private room at Fuji Mountain, a Japanese bar, where we sang Karaoke, or rather screamed it, as we were all hoarse after two hours of that. A room full of Japanese college kids joined us at one point, and weren't driven out by our singing, but actually said, "You guys are choosing great songs!" Ha. The highlight for me: Dueting to the super-cheesy "Never Been to Me" with K, and of course singing it the way K learned it, substituting the line "sipped champagne on a yacht" with "sipped champagne on a rock." I also got to sing "Take it to the Limit" as my four-year-old version, "Take it the Liver." See here for that. I just realized we forgot to sing Journey's "Open Arms." Damn! We did sing "Don't Stop Believing", though which rocked. And we actually knew the words since they were right in front of us.

Saturday upon returning to K's house, D showed me this great clip, which I drunk-emailed Hubby. He emailed back that he still prefers Yacht Rock. Yeah, I'll give him that.

Sunday we went to lunch, then all headed our separate ways. And this past week I had a slow recovery. I arrived home at 12:30 a.m. Monday, and wasn't too surprised to find the house messy. I was tired and jet-lagged and really didn't want to get back to normal life. Oh well!

Thursday, April 03, 2008

Uh Oh! It's a Soccer Mom!

Soccer Mom - n. a middle-class or upper middle-class white woman who drives her children to soccer practice in an SUV or minivan.

Hmm. I fit that description, right? Even better, I play soccer myself! I'm a soccer-playing soccer mom! Except I realized I'm not a real soccer mom. I mean, I now drive a station wagon instead of the SUV. And when I came across a real soccer mom, I hoped I didn't appear that way to others.

I came across the titular person the other day at Harrison's soccer practice. We walked in, and lo and behold, there was another boy standing on the field with Coach Mike. Yay! Harrison was excited, as he's been the only child in class this session, and he said he was sad about not having any of his "soccer friends" in class with him. Today there was another boy. This would be a great class!

Or so I thought. I walked over and sat down next to the other child's mother and said hi. I didn't introduce myself, as she had a small, hand-held video camera in hand, and I figured I didn't need to be caught on camera. She would yell out encouraging things to her child every so often. Ah. Cute. Or so I thought.

It wasn't so cute when the boys started doing warm-up drills, consisting of running to the wall and back. Soccer Mom called out encouragingly, "Run, Son of Mine, it's a race! Yay, you won!" I sat silently watching, just thinking, "Hmm. OK, lady. It's not really a race. They're doing warm-up drills." It continued while the boys did some side-skipping. "Go, Son, go! Yay! You won!" I wondered if the woman thought I should be yelling to Harrison, "Hurry up, slowpoke loser! You're LOSING THE RACE! You must win to ensure my love!" No, I didn't, but sitting next to her made me feel obligated to call out encouragement, too, when I would have preferred to sit quietly watching, you know, the THREE-YEAR-OLDS learning about soccer.

I took out my knitting, but was already thinking better of it when the Soccer Mom said, "Geez, I sound obnoxious, don't I?" I smiled politely, and replied, "Oh no! Not at all!" Then I quietly put my knitting back in my bag, stood up and walked over to a couch on the edge of the field where I could watch in peace, on a more comfortable surface, out of earshot of Soccer Mom. I called out encouragements to Harrison once in while about the over-the-head throw-in techniques they were working on, and when he kicked a very nice shot into the corner of the goal, and I didn't yell about Soccer Mom's little pig precious angel when he tried to wrestle with Harrison and was lying on top of him on the field. I mean, Harrison likes to wrestle, too, but he does it with Hutton at home, not during soccer practice. Did I mention my feelings of smug superiority whenever Soccer Mom's Precious Angel picked up and carried the ball and had to be reminded to use his feet, while Harrison dribbled the ball? Yeah, it looks like competitive soccer moms bring out the worst in me. I really, really, really hope that Soccer Mom and Precious Angel were only at practice because it's spring break, and that they won't be returning. We shall see.

The soccer mom thing is interesting to me, because it reminds me of what I might have become had Hutton not regressed into Autism. If Hutton were neurotypical, would I be videotaping him in soccer practice, yelling out to him to go, to win that race? I really can't say. I mean, I'm not that way with Harrison, but I might have been, had I not realized that life isn't all about making it to the wall fastest in a soccer drill.

I actually signed Hutton up for a spring soccer class, his first foray into sports since his diagnosis. We'll see how it goes when class starts in a few weeks. See, I am a soccer mom!

Jenny on Larry King Live

Wow! Just wow.
(Here's a transcript of the show if you didn't see it.)
That was wonderful to watch, though I felt my anger rising whenever two out of three pediatricians did any talking. Maybe you can pick out which ones I didn't like.

As I was watching, Harrison was talking loudly, and I had to rewind several times to listen again. At one point, I had to rewind to hear the amazing, "Bullshit!" one more time. You said it, Jenny! How many times have I yelled that at the doctors on TV shows like this? Thanks for taking the words out of my mouth (at home where they can't be heard) and giving me and other parents like me a voice!

As the show was ending, and I was reveling in my feelings of excitement about the truth finally getting heard, Hubby came in and said something snide, along the lines of, "Those poor doctors, they spend years in school, only to appear on a show alongside a former centerfold." He was attempting to be funny, but I immediately whipped my head around in a Jenny-inspired tirade. "At least she's doing something! She's getting the word out about Autism! No one listens to regular parents! Jenny knows more about Autism and vaccines than those stupid doctors do, and they chose to be on the show with her. If they can't handle the truth, they shouldn't be on the show!" I don't remember what exactly I said, but it was something like that, and there was steam coming out of my ears when I said it. Hubby was smart enough to not say anything else.

Now, Hubby has his good qualities (I mean, I did choose to marry him and bear his children! I'd hope I could see his good qualities!) but on the Autism front, he's been less than supportive of late. Back when Hutton was diagnosed, four long years ago, Hubby was actually reading about Autism. He bought the books on it, and handed them along to me after he read them. I was glad he was doing the research, since he double majored in computer science and CHEMISTRY in college, and might actually make sense of the science involved. But then, it stopped. Hubby stopped reading the books, and seemed to give up on finding ways to help Hutton cope with Autism. Instead of perhaps, getting his younger sister, who happens to be a pediatrician, involved in the study for causes and therapies that might help, he gave up, and I became the parent who read everything I could on Autism, even when I don't understand the science most of the time. I don't want to be responsible for causing any family rifts, so I don't even bring up Autism with his sister. I'm weird that way. I also have never discussed it with my MD-PhD friend from college. I don't want to have a falling out with her, as I don't know which side of the issue she'd fall on.

Anyway...Hubby doesn't help on the biomedical front. He doesn't really help with anything Autism-related. He's a great dad, but I suppose he doesn't want to get his hopes up that Hutton will recover and have his hopes dashed if Hutton doesn't recover. I don't know. I'm OK with being the "Warrior Mom" who does all the work with Autism. With taking the poop samples (which, by the way I got FedExed yesterday! Yay Me! See Tuesday's post if you don't know what I'm talking about!). With getting Hutton to take all the supplements (this is almost, dare I say, easy now that Hutton can swallow pills! Yay Hutton!) And giving the B-12 shots every three days.

However, I do have issues when Hubby attempts to belittle my efforts or those of other Warrior Moms like Jenny. A month or so ago, Hubby said something about the many supplements Hutton takes, along the lines of saying to Hutton, "I don't know why your mother tries to get you to take all those vitamins. They don't do anything!" Steam shot out of my ears, but I simply did the "ignore Hubby for a long time" rather than yell at him in front of the kids. That sort of thing really pisses me off. Hubby may have lost his hope, but I have not. I will do everything in my power to help Hutton. If giving him B-12 shots in the middle of the night when he's asleep helps his verbal skills (and they appear to do just that) I will give them. If I have to sit beside him, holding a cardboard box under his bottom while he poops so I can take stool samples to check for yeast problems, I will do it. I'm not giving up, and that won't change.

Tuesday, April 01, 2008

April is Autism Awareness Month

And I'm adding this little gem to my blog in honor of that!

Of course, around here, every day and every month I'm more than aware of Autism. My life practically revolves around it. It influences what I read, what I eat, what I watch (that's the only reason I can think of for watching a 2006 conference on Pediatric Bioethics regarding vaccines on cable earlier this evening!), what I spend way too much time researching online....

On the Autism front, I got a call on my cell phone this morning when I was watching Harrison's soccer practice (I'll be blogging about that later!). It was the school nurse. Hutton was complaining about his tummy hurting and he wasn't getting on well in class. So, I went to pick him up. I figured his "tummy" issues were related to...any of you Autism parents have a guess? That's right, CONSTIPATION!

This starts some real "Autism Awareness" for those of you not in the know about some of the ways Autism plays in the bodies of some of those affected. If you're not really interested in reading about poop and gut issues, here's a great place to stop! Wait, one more thing: watch Larry King Live tomorrow. It's an Autism show, since April 2 is World Autism Awareness Day.

Now, where was I? Oh yeah. Constipation. Everyone's favorite in the gut issues game. Diarrhea gets all the good jokes, but constipation really is so much easier if you're going for gut issues. Well, maybe not "easy."

I have to get Hutton's stool and urine tested before his next doctor appointment anyway, and we need to go back before May so I can get a new script for B-12 shots, so I was ready for poop. I had been putting off the testing forever, but I knew Hutton was constipated, and needed to poop, and I needed the poop to send to the lab. I had the little poop containment device (just a cardboard box, really), the 4 vials to be filled with poop, the oh-so-important latex gloves...but no poop. I told Hutton to relax and we'd try again later. His tummy would feel better soon.

We ate lunch. I gave Hutton a laxative. We went to the bathroom for round 2. No poop. I told Hutton to try some grunting noises. That always does the trick, right? Nope.

Let's see. Found some suppositories. Read on the stool sample instructions NOT to give suppositories. Ahh, screw it. I told Hutton what was going to happen and did the deed. About five minutes later, back to the bathroom. And finally...poop. Ahh, relief for constipated boy and mother. Well, not really relief for me. I had to don the rubber glove and start taking samples of the poop. (I avoided the "sample area" touched by suppository so as not to mess up the lab test. And really, I never thought I'd be writing those words. Ever.) But then, I realized I am supposed to fill two vials from today's poop, and two more from tomorrow's poop. So, I have to make sure Hutton poops again tomorrow, and that I'm there to catch it in the other cardboard box. Wow! Is this sounding fun or what?! See, if he doesn't poop tomorrow, I'll have to get another test kit from the lab, because you have to FedEx your poop samples Monday through Wednesday, only. No poop from Thursday on. I really, really, really don't want to waste my, and Hutton's, hard work on today's sample. He must poop tomorrow. Oh yeah, and I have to get a morning urine sample, too. Sigh.

Many with Autism also have intestinal dysbiosis. Bacteria and yeast out of whack, poor digestion, food allergies, and the dreaded "leaky gut", or alternating constipation and diarrhea. Did you know that? I didn't, until I had a child with Autism. Now I know. I'm very, how you say, oh yeah, AWARE!

Hutton is on a gluten, casein, corn, and egg free diet to help heal his gut, and he takes many supplements to help as well. However, he still has yeast overgrowth, I'm sure (one of the things we're testing for in the above mentioned sample), as it's a side effect of oral chelation. In the past, he had yeast from use of antibiotics to heal ear infections, before I learned the trick of using warm garlic oil drops or grapefruit seed extract (which is also helpful for killing yeast in the gut, go figure!) in the ear to help heal ear infections. Hutton's ears and "tummy" are the cause of the two times he's had to be picked up from school at the nurse's office, in his four years of school. (He's had to be picked up early from "normal" daycare places, a few times over the years, too, but that's always been for behavioral issues. We rarely use daycare anymore. He used to go the gym daycare a lot, pre-diagnosis, but now I just go to the gym when he's in school. I managed to get almost an hour of free daycare at Ikea this past winter before they paged me because Hutton was "ignoring them" and not following directions. I know, almost an hour! Wow! I didn't tell them he had Autism. A little experimental and it could have really blown up in my face, but still. I needed my almost hour of power.

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