Monthly Archives: October 2013

Raising the Bar

This morning, Mikey had a wet bed. So wet that his socks were saturated. He’s pretty fixated on his new pink fleece pajamas (they’re my cozy snowflake pajammies!!!!) and was quite upset at 5:12am to have to remove them. I promised him that if he put them in the wash and went back to sleep, they’d be ready to wear before we had to leave for school.

And darn if that little booger didn’t do the wet laundry! We help him put the soap in the washer, but he can do all the rest of it. He’s so motivated to do the laundry because he has exactly two outfits he loves to wear, and so is always very eager to move the process along when his Wizard of Oz shirt and fluffy pants are on the line.

He goes into the basement totally on his own, moves the laundry into the dryer, starts it. Then, when he hears the buzzer, he gets the wash out and even carries the basket upstairs. I was flabbergasted to discover that my four-year-old even empties the lint trap.

I can remember in college going to Cody’s apartment to investigate a broken dryer, only to discover the gang of college boys living there had not emptied the lint trap in months. But Mikey remembers!

Like his father, Mikey is a meticulous person. Once he knows the steps in a task, he will follow the steps in the prescribed order and make sure the task is done properly. It shouldn’t surprise me that my four-year-old empties the lint trap. Once he can read, I’m sure he’ll separate the clothes and adjust the settings for knitwear and delicates!

This morning was just another reminder that Mikey is a brilliant person. I say this not to brag about my child, but to remind myself that my kids are capable of so much more than I consciously think about. I’m often in utter survival mode, total tunnel vision, and I just grab things and do tasks. Of course, my son has been watching me and paying attention and knows just what to do.

What else have I been doing for  him that I should be trusting him to do all on his own? How else can I empower him to do things himself? I’m so glad we have him in a Montessori education setting. “Teach me to do it myself” is a motto I should hang above every door frame in my house!

The Peanut Meeting

Monday afternoon, I met with the school about the peanut incident from last week. This meeting also transformed into Mikey’s IEP review meeting. Good thing I brought along our BSC!

The principal called me in the morning to follow up and to let me know who would be present from the school: Mikey’s early intervention teacher, her boss, a family advocate, the occupational therapist, and Mikey’s classroom teacher. The principal herself would have attended, but she was meeting with the school board in the same time slot.

I was absolutely impressed and thrilled with the meeting, from start to finish.

We had gotten an email of the IEP (individualized education plan) over the weekend and read over it. Mikey has 2 goals outlined in the plan: to complete given tasks without additional prompting/pay attention to a task for up to 5 minutes, 80% of the time AND to interact appropriately with peers 3 out of 5 opportunities.

I felt pretty happy about the assessment of his progress, the action plans in place to keep progressing and I loved how the table asked our BSC for input. Last year, there was some sort of odd resistance to our BSC even coming into school to observe, which was troublesome but at the bottom of a very long list of “things” I had to deal with every day.

So it was great for the BSC to participate in the conversation, talk about strategies we use at home, and really map out a way to have continuity.

My favorite part of the meeting was when early intervention whipped out some data about Mikey’s behaviors at school, complete with comparisons to last year’s data. I had no idea this data existed! Nobody even mentioned it last year, let alone showed it to us.

Cody and I have bar graphs and plotted points on paper to show us how Mikey acts when the EI staff are observing/working with him. This feels amazing to me. Objective data! Someone who sees my son and helps me to interpret what she’s seeing!

Very quickly, we moved to discuss the peanut incident. I felt so happy with the collective sense of horror at what happened. One person at the meeting touched my hand and asked me whether am ok, and it felt really fucking good to say, “Well, I sure wasn’t this weekend!”

I had printed a bulleted list of the things I would like to see in place at school to ensure Mikey’s safety. I spent the weekend talking to other allergy parents and reading, reading, reading the entire Internet. When I made the list I really tried to think about his safety, the medium-severity of his allergy, and the reality of the situation at a short-staffed school cafeteria with about 60 preschool kids eating lunch at the same time.

I was simultaneously happy and disappointed to learn there are actually federal guidelines in place (not local, not state…Federal!) for school cafeterias in regard to students with anaphylactic allergies. Disappointed because these measures should have been followed all along, but weren’t. Nearly every thing on my list is actually defined as a standard operating procedure for allergic kiddos.

Stuff like clean the lunch table/bench before Mikey’s class comes to sit there or ask classmates to wash hands before working with shared materials in the classroom. Make sure substitute teachers know about Mikey’s allergy. Make sure all his regular teachers know the location of his epi injector and have easy access to his emergency instructions from our pediatrician.

My action item from the meeting was to bring home more copies of the emergency action plan and medication paperwork I’d filled out at the beginning of the year. Of course, this time when I fill it out, I’ll be making digital copies so I don’t have to schlepp all over the place getting doctor notes if the forms should get misplaced again.

I feel really energized to see the school taking swift action to keep my son (and all the other allergic kids! Surely there are many more!) safe. I also got a follow-up call from the principal that she pulled another grownup from somewhere else in the building to add another set of eyes in the lunch room while the preschoolers are eating. Seems like everyone wins with more eyes in the lunch room.

While I was in the meeting, Mikey was in class sharing his copy of Allie the Allergic Elephant to help build awareness with the other students. He also took in his epi injector tester and demonstrated. Perhaps his classmates will be less likely to have their peanut butter sandwiches anywhere near Mikey’s lunch bag.

In the end, I’m glad there was a catalyst to increase attention to these sorts of medical issues at school. I’m more glad that Mikey was safe despite the rogue sandwich infiltration.

Renewal!

Hurray! It’s time to renew our medical assistance application! We got our big packet in the mail, 12 days after the date at the top of the letter. No matter–I set aside my Friday evening to review the information online.

At first I thought I’d have to do the whole thing on paper, because the computer insisted it needed either Firefox or Internet Explorer, but we were able to fool the state website into thinking Safari was IE. I think I would have rather taken all my crap to the library to access IE than to do it all on paper.

I spent a really long time looking up all the phone numbers I’ve ever had in order to answer their security questions–which of these numbers is one you’ve had in the past 12 years? I envied my parents, who’ve had the same phone number as long as I’ve been alive. Who even knows which phone numbers I’ve had?

I then spent eons answering questions about Alex, telling the state he is not a student, nor is he unemployed. Or is he unemployed? I mean, he’s not employed…but doesn’t unemployment imply an involuntary removal from the work force? These are the sorts of questions I juggled while I tried to also make the system understand why my toddler doesn’t have a state identification card.

I will say that the renewal seemed much easier than the initial application for the benefits. Hopefully, after they receive my email with our federal tax returns and Mikey’s latest psychological eval, we’ll be renewed with no hassle. I’m not anticipating that, though–the greatest predictor of future behavior is past behavior, right? (I learned that on Boardwalk Empire this week)

Past behavior indicates this shit will take me 2 months and at least a dozen phone calls. Good thing I have a light-ish work load in November!

Lunch Dangers

My Mikey has a peanut allergy. I mentioned this before. There’s a severity scale for anaphylactic allergies, and Mikey is a low-medium right now. We haven’t done a peanut test yet (our pediatrician wants to wait until he is 7), so we don’t know if he’s gotten better or worse since being tested at 14 months old.

We know that peanut allergies involve a cumulative response, which means that each exposure he will have a more severe reaction. He’s had 2 exposures since the one that tipped us off to his allergy, although we reacted SUPER quickly to the most recent exposure and I’m not sure if it counts.

I carry 2 epinephrine injectors with me everywhere I go–I find peanut shells on the playground at school and grubby kids eating peanut butter put their hands on all the toys in all the universe. And of course they do! My kids touch stuff with food on their hands and Alex regurgitates nuts and other foods everywhere he goes. But, really, I live in a constant, simmering fear of peanut exposure for Mikey.

So please understand my blood-freezing fear when I opened Mikey’s lunch bag yesterday to discover another child’s lunch container inside…holding a peanut butter sandwich. A PEANUT BUTTER SANDWICH. In my son’s lunch bag.

I almost vomited, I was so upset.

Two phone calls to Mikey’s teacher resulted in an underwhelming response. I learned that the cafeteria is “chaotic.” Well, yes. Exactly. Hence the life-threatening sandwich in my child’s lunch bag.

After not sleeping a bit, I called the principal first thing in the morning. She was horrified. She gasped when I told her. I felt immediately validated. I learned that students with food allergies are supposed to have 504 plans in place. Mikey does not have this. At the beginning of the school year we filled out paperwork, which is kept in the nurse’s office, with instructions for how to respond to a peanut exposure.

This is all well and good, but the school nurse is only on site 2-3 days per week.

I now have zero confidence that any other adults in the school understand my 4-year-old’s peanut allergy or what to do if he should, say, reach into the container in his lunch bag and take a lick.

I’m very glad we have a meeting with school on Monday to iron out the plan–since Mikey has an IEP, we’ll be adding the allergy information to that. We’ll talk about things like where Mikey will sit at lunch, who can join him, and under what conditions. We’ll talk about plans for letting substitute teachers know about Mikey’s allergy, and the plan will include language about staff members being educated on how to use the epi injector, as well as where it will be kept.

I ordered an additional injector pack to be kept in the main school building (Mikey’s injector lives in his classroom, where his teacher knows how to use it–I know because I showed her myself).

I feel like I’m able to see this situation with some perspective–I understand our governor has crippled public education and the school has zero dollars. I know this, because I help buy soap for the bathrooms at school. So I know there’s no money to get additional staff in to help monitor lunch.

But I also know my son could have died if I’d tossed his lunch bag into the back seat and told him to help himself, as I often do on the drive home from school. He could have died. So, somewhere in the budget that doesn’t work, the school must find a way to keep my Mikey alive. We’ll hammer out some action plans on Monday.

On the Move

We traveled to the Southwest to visit my sister for her 40th birthday celebration. My entire extended family rented a big, old house together in the desert. It was pretty exciting–my boys got to spend time with their cousins and see grandparents…even meet an uncle they’d not yet met.

The first 3 days we were gone, Mikey behaved like some sort of dream child. It was unnerving! He didn’t even spazz out at the airport when TSA tried to take away his bingo dabbers.

As Alex wailed in my arms, “Dabby! DABBY!” the agent inspected my clear, quart-sized bag and grilled us about the bingo dabbers. He even took them off somewhere to “measure” them. Meanwhile, Mikey’s 3 injectable epinephrine syringes? Didn’t even warrant a glance. I just don’t get it. I mean, I could have stabbed a flight attendant in the neck with the injectors. What was I going to do with the bingo dabbers other than stain the airplane seats?

I digress! We dealt with the time change by reverse-meltonin usage. Mikey stayed up as late as his energy allowed and when he woke for the day at 2am, we gave him his chewy medicine and back to sleep he went.

He threw a few rocks in the heated pool and pretended to sit on a pokey cactus, but really he was a delightful person.

Then Tuesday happened. Ugh! It was just one thing after another, one meltdown leading into the next. The meltdowns were just so much worse away from home, under the gaze of our relatives. A hard part was when his cousin (also 4 years old) looked up at me and said, “It’s just not ok to be that kind of naughty.”

I don’t blame him–Mikey had been kicking him and physically harming him for about an hour. I just feel sad when other kids his age notice Mikey’s “other-ness” even if they don’t quite have the right words to discuss it.

We made it back home ok in the end, and I must say I’m enjoying the jet lag this direction. My little dude slept until SEVEN THIRTY this morning. I don’t think this has ever happened in the history of his external existence. Not even when he was super sick with a lung infection.

Not even that day where he fell asleep in the basket of a shopping cart at the pharmacy waiting for his medicine–not even then did my Mikey sleep past the songbirds.

Maybe it will last a few days longer!

Superhero Resolution

We ended up not going back to superhero class. I bit off more than I could chew this week in terms of work on top of preparing for a family trip, and when Wednesday afternoon rolled around, I didn’t have it in me to deal with even a marginally stressful session. So we didn’t go!

Mikey at one point said, “Oh no! It’s Wednesday! I have superheros on Wednesday. We need to go or I’ll be LATE!” And I just told him we weren’t going to go.

So then, of course, he was upset, but I think that’s mainly because I changed his routine on him and didn’t give him fair warning. He was over it pretty quickly.

And just like that, I felt a million times better! My shoulders aren’t up at my ears. My back isn’t clenched. My arms don’t ache from carrying both of my children across the building repeatedly.

It might be true that he could have come to love it given one more chance, but it’s more likely true that Mikey just isn’t ready for these sorts of classes yet.

Once I decided I no longer cared about the tuition we paid for class (started instead thinking of the money as a downpayment on a peaceful afternoon), the choice to stop going to class was obvious.

So yay! We have more unstructured family time Wednesday afternoons. Maybe we’ll retreat to the woods and hike.

Conferences

Woah! I just had a wonderful parent-teacher conference with Mikey’s teacher! Since he’s come off the antibiotic, he’s been in a much better place–back on par with the developments we’ve made over the summer using PCIT.

How wonderful it was to discuss his academic work at school (I mean, I know he’s 4, but there are still academics) instead of just his behavior.

I learned that Mikey loves math and science, which I knew, but was excited to have that reaffirmed. He’s desperate to do some of the different math works, but can’t write numerals very well yet and so has to keep working on his fine motor skills. I guess he has a good rapport with the Montessori tutor in the room and they work on the dry erase board drawing and tracing numerals a lot.

Mikey is HOT to work on this addition project. How interesting that the addition is not a stumbling block for him, but just the ability to record his work.

He’s fascinated by some of the works about the human body and his teacher tells me he follows the older children around and sits in on their science lessons, learning about organs and the circulatory system. This I suspected, because he’s been coming home and talking a lot about bones and muscles.

I asked what she (his teacher) does in response to Mikey selecting the same work again and again. I know that in a “pure” Montessori school, the teacher wouldn’t intervene because repetition like that teaches children order and really allows for a deeper understanding and concentration. But this is a public Montessori, and so she said she usually tries to steer him to do something he’s maybe struggling with (like a handwriting work) first and then work on his favorites.

I was really thrilled to learn what strategies are working well for Mikey–he paces back and forth on a line of tape by the cubbies when he feels restless, and this has inspired his teacher to add a yoga work to the classroom. She’s going to bring in a mat and some yoga pose cards for all the children to use when they need to move their bodies!

Mikey now washes down the tables if he’s restless during circle time. He gets a wet paper towel and scrubs and walks, still paying attention and participating.

He’s also unofficially allowed to have gum at school, which I know makes a big difference, at least in him not destroying all his clothing by chewing holes in it. Plus he might not have wet sleeves if he’s chomping his gum!

Word on the street is that he’s made peace with the gym teacher this year, too, although I haven’t spoken to her directly. Hopefully things will keep on working out for him. I sure could get used to those sorts of teacher meetings!

What fun it must have been for my mom to go in and speak with my teachers. Except for the teacher who didn’t like me because I “made up stories.”