Monthly Archives: December 2013

Little Old Lady

Miley can be a little old lady sometimes. When Alex wakes up crying for me all night long I hear Miley saying, “shush!! Mommy is trying to sleep, Alex!”

When playing with his cousins at Christmas I heard him scolding them, “guys, it’s not safe to run because you really could fall and hurt yourself!” Or else “I think it’s time we cleaned up these tiny pieces before some of them go missing.”

Of course most of these phrases are straight from my own mouth. Is he just repeating what he hears all day long? Have I placed all this worry on his shoulders or is it just something he’s taken on as the oldest child?

Obviously he’s not saying or thinking these things all the time. He ran on the ramp at the zoo the other day and fell and wrecked his lip. I’m looking across a sea of his tiny piece toys strewn about the living room and I lie awake listening to his own nighttime ramblings plenty of nights.

I suppose I find it interesting how comfortable he seems to be in his role of mother hen. Much more comfortable than he is just playing with other children. I wonder if this is some sort of coping mechanism for him? He’s not quite certain of appropriate social interactions so he defaults to rules and nagging when he’s in a group?

I was just so happy to see him running around right beside his cousins instead of lingering back alone. Perhaps the scolding is a small bit of progress!

Peanut Challenge

We had our long-awaited appointment with the allergist at Children’s Hospital last week. I spent a long time preparing Mikey for what to expect–needles. Of course, he felt anxious about the appointment. He even told me he actually didn’t really want to eat peanuts. Just kidding! He swore up and down he would never, ever touch a peanut, even if Phinneus put another one in his lunch box.

So, with sad faces, we went to the appointment. Right away I loved Dr. G, who immediately began referring to Mikey as “Obed” just as instructed. It turns out Dr. G’s college roommate went to Botswana for the Peace Corps or something and had sent Dr. G a nice basket from that country. Obed and Dr. G had a very nice conversation about meerkats and sub-equatorial climates.

At the end of all this, we got a scratch test, which turned out NEGATIVE! So, Dr. G ordered some bloodwork.

Now, bloodwork. Oy! The phlebotomist got the needle in his cooperative arm, and then he immediately jerked it away from her and that was the end of that peaceful endeavor. He probably screamed for 30 solid minutes, his eyes wide with fright. He was cold, clammy sweating, like a rabid beast.

For the first while, I tried a gentle approach. We let him “poke” me with a capped needle. We let him poke himself with a capped needle. The phlebotomist gave him all the toys and marketing crap in the room, plus a pack of fruit snacks from her own lunch box. Then, we had to get a little mean and I climbed on top of him to hold him down while she stuck the needle in.

The anticipation of the thing was so awful for Mikey, but he really didn’t seem to even notice when the needle was in his arm. He kept thrashing until he observed that his blood was very red, which made him stop to comment on red as his favorite color. Then came all the questions about why blood is red.

All the while, he was spurting blood all over the place. Evidently because he was so worked up, he became a gusher.

So all of that was very stressful, and Dr. G told us it would take about a week to get the results–which would be Christmas Day.

Cody was beside himself to get a call two days ago from Dr. G personally. Mikey’s bloodwork was clear! We were approved for a home peanut challenge. Not even in the office with nurses and epi pens at the ready!

With excited hearts, we rushed to Trader Joe’s to buy all the peanuts. Peanut butter cups. Peanut butter pretzels, peanut butter cookies, and peanut trail mix. I opened the box of peanut butter crackers–the very same type of crackers Mikey got exposed to last summer with no reaction, spurring the long-awaited appointment with Dr. G–right in the parking lot and we all stood around watching as Mikey slowly ate the cracker.

Nothing! He observed that he became very thirsty and that peanut butter is hard to swallow. But no reaction. No hives, no redness, no swelling, no itching!

And we haven’t looked back. My boy is allergy free, and we bought peanut butter and have been eating it like people do. What a gift this was for our family. Mikey is among the 20% of children who outgrow peanut allergies. As Cody predicted years ago, Mikey “beat this thing.”

So if you’ll excuse us, our family will be spending the holiday gorging on peanut butter everything. Thai food! We’re going to eat Thai food!

Book Store

This week was the Scholastic book fair at Mikey’s school. I signed up to volunteer, so I didn’t bother to send in any money with Mikey because I figured I’d just buy him whatever he picked while I was in there. Of course, I neglected to tell him this. He came home from school enraged on Tuesday when his class went shopping. “I didn’t have any money for the book fair! I was the only one.” 

While I’m sure this wasn’t true, he’s right that I should have prepared him. I was probably just so busy preparing him for everything else, like the weather forecast and lunch routines and supper menu for the week and on and on and on…

Today his class did round 2 in the book fair, and he forgot I was in there. He came sauntering in with his classmates and froze in his tracks when he saw me. Horrified! Embarassed. Like, oh my GOD my MOM is HERE AT SCHOOL!” 

But then he thought really hard and picked out a National Geographic animal book for his brother because he knows how much Alex likes animals, giraffes in particular. The two of them are right this minute curled up on the sofa “reading” the book together. Worth it!

“Where Can I Pee?”

We have a wooden, child-sized rocking chair that a relative made for me when I was young, so it’s over 30 years old. It’s in great shape and, because there’s only one, the children fight over it mercilessly. Part of me wonders if they get up so early in the morning in a mad scramble to claim the rocking chair first.

My mom keeps offering to buy a second chair, maybe a recliner, for the kids. I keep telling her it won’t matter unless it’s an identical chair. It could be a piece of paper and if there’s just one, the kids will fight over it until someone bleeds. Whoever is NOT sitting in the rocker just sits on the stool or the couch, crying for the rocker.

Mikey likes to pull the rocker an inch from the television and sit in it so he’s blocking the buttons on the DVD player, so Alex can’t interrupt whichever video he’s scripting that week.

Alex likes to set it up in the middle of the room the way a person might typically use a rocking chair, actually rocking while he either watches movies or reads a book. Both of them love to snack while they sit in the chair.

Yesterday, Mikey was camped out in the chair for really quite a long time. We were watching A Charlie Brown Christmas (or maybe the Grinch…), when he suddenly turned around and wailed:

“I don’t want to leave here! Where can I pee????”

Cody and I were stunned. What was he talking about? And then the realization dawned on us that our son was looking for a piss jug to use rather than pause his movie, relinquish the rocker, and use the toilet. I was reminded of that awful episode of South Park, where Kartman’s mom walks around with the bed pan so her son can keep gaming.

It did no good to point out that Alex didn’t actually care about the video or the rocker at that time. He was totally doing something else, but of course got more interested the more Mikey freaked out about not wanting to give up the chair. Eventually, to his sobs and protestations, we insisted he pause the movie and use the toilet. And by insist, I mean we had to threaten him–threaten to take his fluffy pants, threaten to take away his stuffed bear.

He’s so stubborn sometimes. I hate it when we have to apply these ridiculous consequences, but it’s almost like he needs something nonsensical to jolt him into awareness that he really can’t just pee on the rug.

The whole thing was a non-issue in the end. He peed, he came back, he sat in his chair and the movie continued. I worry, though, about where he’ll pee in his college dorm room.

The Next Frontier

I wanted to write about so many things last week.

I wanted to write about how Mikey loves The Mystery of Meerkat Hill, a book set in Botswana, so much that his make believe play is almost entirely centered on the plot. He, in fact, refuses to answer to any name other than Obed Ramotswe and is very upset that his teachers and classmates won’t call him Obed.

I wanted to write about how Mikey and Alex are sharing a bedroom now, and the first thing they do when they wake up is ask for each other–only if Alex wakes up first and says Mikey’s given name, my elder son corrects him. “Obed! Call me OBED!”

I even wanted to write about the winter activity countdown we’re doing, first because it’s a fun way to count down to Christmas and second because it’s been helping Mikey accept winter’s arrival. We made borax snowflakes yesterday and hung the sparkling finished products from the blades of the ceiling fan. Both children love to watch them twinkle in the lights from the wee Christmas tree we decorated. We’ve been visiting the Spirits of Giving from around the world downtown, reading Christmasy/wintry books, drinking cocoa. We’re just having so much fun getting ready for winter and Christmas!

But I haven’t paused to write about any of that, because I’m so sad. We got a call last Wednesday that school can no longer handle Mikey’s behaviors–they want to get some more help in the classroom.

The first step in this process has been to gather data to present to the insurance company who would pay for the TSS to be with Mikey during the day, and the first piece of data was a long letter from Mikey’s teacher. That was a hard letter to read. While this year has seemed better than last, the letter reminded me how relative a term “better” can be. There, in bullet points, was a list of all the reasons my son really isn’t doing so great–in all ways apart from academically–in his classroom.

I think the most difficult news to read was that other parents have been writing/calling in to express concerns about my son’s physical impulsivity. That took some wind out of me. I fought back tears as I pulled Mikey into my lap and rubbed his hair until he told me I was messing up his detective work.

Tomorrow is Mikey’s psych eval and meeting with the insurance folks, where we’ll make our case for TSS at school. Our last meeting with the insurance folks didn’t go so well, but we’re with a new agency now, and I feel confident we’re better supported.

BUT! Then came a casual discussion with our pediatrician, the one who thought perhaps a rocking chair was the ticket to solving Mikey’s behavior challenges. I had Alex in for an ear check and the pediatrician asked how Mikey’s been doing. Upon mentioning these struggles, our ped said…our pediatrician BROUGHT THIS UP. He said, “Maybe it’s time to talk about ADHD medication.”

Whew! Flabbergasted again. I felt the weight of the world sink onto my shoulders. My pediatrician! Who doesn’t believe in occupational therapy. This man thinks Mikey might need to take medication. He wants me to make an appointment after the New Year to discuss it with him in more detail, but he was as troubled as I was by the news of other parents expressing concern.

Mikey is so young. He’s 4.5 years old. I feel sad to think that he might need this sort of medication just to be calm enough to put the lids on all the jars in his work basket. I feel grateful such a medication exists, but I worry about my wee son and his still-developing ability to tell me about things like side effects. There is so much responsibility in the decision to medicate. I don’t feel up to making it right now.

I’d like to think a TSS can be beneficial to Mikey at school. For now, I’m waiting and watching and gathering information.

Have any of you readers used medication for your kids? At what age did you begin?

Anniversary

Yesterday was the day, one year ago, where I heard my son’s diagnosis. I still remember that day as one where I felt light-headed, relieved, and extremely hopeful. I left the meeting utterly overwhelmed, but thinking help was on the way! Help was going to come and turn my life around and my son would stop seeming impossible to parent. Life was going to get easy!!

It’s been a tough year. Things are better, for sure, but I know now that there is no magic therapy that’s going to make life “easy” for us. Things will always be tough. I mean, life is tough. But parents of kids on the spectrum know a particular kind of toughness that (this time last year) I thought might go away.

On the anniversary of our diagnosis, Mikey had his first meltdown in 4 days, and it was short-lived–he really just needed a nap. I see how differently we speak to him and plan out our days now. He’s come a long way.

That night for dinner, Mikey set the table all on his own. He chose Graceland to play on the stereo (turned it on himself) to set the mood, and he counted out enough placemats, silverware, and napkins for 7 family members. He even set out wee dishes of applesauce for everyone to enjoy with their latkes.

I felt so proud of him. I’m excited to see what growth this next year will bring.