Squeaky Wheel

I guess late August into early September will just always be my season of squeaking until I get grease.

Today, the bus came…20 minutes late. I called the garage about 10 minutes before school started and they assured me the bus was on its way. I opted to just wait for it since by the time I walked home and got the kids in the car and drove to school, Mikey would be late anyway.

Of course, the later the bus is, the more Mikey chews the crap out of his hands. He’s been nervous about chewing his gum because he has a classroom rule about no gum. Well, if the school would set a meeting to discuss his 504 plan, we’d be able to discuss this with his teacher!

And so, I have to send emails and make calls. His plan hasn’t even been distributed to his teachers, which doesn’t surprise me. I can’t decide whether I should email my photograph of the plan (my only copy of it) or just wait for school to be deeply in non-compliance so I can report them to the state.

Of course, I don’t want to deplete the school of precious resources. But I also want the damn social worker to be a little more competent. Cody and I looked up her salary online. She earns $80,000 a year. I’d like to hope that’s enough compensation for someone to at least distribute paperwork properly.

I’m going to operate under the assumption that the bus will be late this afternoon and just won’t head out to the stop until much later than Monday.

How many years will my stress level be like this in autumn? At least a few more, it seems.

Back Into the Fray

We moved into the new house, unpacked our stuff, lived around construction workers, and are as settled as we’ll ever be here. So that means it’s time to get back to school. I’ll tell you what, it’s getting harder for me to champion our public schools.

Mikey has been amazing, resilient, and flexible amidst a sea of unacceptable snafus.

The district evidently got a “new system,” and so transportation letters were never sent out. So hundreds of thousands of students were left with no idea which bus stop to go to, which bus might come, or what time they should be there.

So, hundreds of thousands of parents were calling the central transportation office…all at once. I managed to get through and find out some bus information. Ok, fine.

Then, because of the “new system,” our school (and presumably all the others) weren’t able to send out teacher letters. So kids had no idea who their damn teachers are!

Our family is so privileged: we have an adult at home who can dedicate time to hunting down these answers. We have transportation. We are able to get to Open House Night to figure out the teacher situation, at least.

So, enter the first day of school. Of course, Mikey and I waited and waited at the bus stop for a bus that did not come. He bit his nails to the quick, worried he’d get in trouble for being late or not have a chance to locate his new locker. I gave up after a half hour and drove him.

I was able to walk him to his classroom, where his teacher welcomed him warmly and showed him to his locker and just wrapped him right into their activity. He seemed ok when I left, which is a relief.

On top of it all, the “new system” uses e-fax or something so if we fax something, it goes directly to the recipient’s email address. Which is great, except the school nurse doesn’t yet have access to her email, and so she doesn’t have written permission to give Mikey his medication today.

Even though we faxed her all the appropriate paperwork on Friday.

I give up on today and am just eating bowl after bowl of Cinnamon Toast Crunch and watching reruns of Survivor. 

The bus company, who *whoops!* only realized at 10am that the driver for Mikey’s route hadn’t shown up for work, assures me someone will be bringing him home from school. We’ll see. I’ll be standing there in the sun with some mini-lads waiting for him.

Mr. Maturity

the neighbors have had contractors at their house for months. They are doing a total gut/remodel and we’ve been living with construction noises since early spring. Today I felt frustrated because the moment I got Alex down for nap, they started in with the table saw. Ugh! Of course Alex came downstairs crazy eyed and awake. 

Not to fear! Mikey said, “don’t worry, mom. I will put him back to sleep.” And he did! He walked his brother upstairs and told him to get in bed. Alex complied and went back to sleep. 

Stunned, I asked Mikey what he’d like for a reward treat. He asked to watch an episode of Blues Clues and to eat a cucumber. Done, buddy. Done. 

  

Eyes

As you can see in the cover photo for this blog, Mikey has always tilted his head to the side to play with wheeled toys. Therapists tell me this relates to executive function, and it’s something common among kids with ASD. He continues to do this, but I’ve also noticed a ton of squinting lately.

Really, the past five months. He squints when he’s building with Lego, he squints looking at screens, he squints when he reads. He keeps passing vision tests at the pediatrician and screenings at school, but worry simmered just beneath my surface.

Just when I had decided to call an eye doctor about it, the school nurse called to tell me Mikey failed his stereo/depth perception screening. She said she administered it several times, because she’d never seen a kid fail just that and not the other aspects of the vision screening.

I decided to call a developmental optometrist whose office is about a half hour away. I’m not entirely sure what that means, to be honest, and I already know the person will suggest a vision therapy not covered by insurance. I also know that I won’t be making regular drives up to this office to receive expensive vision therapy not covered by insurance. And maybe I don’t believe in the therapy?

Basically, I’m a little worried about voodoo pseudoscience, but I also know there’s something going on with my son’s eyeballs, and I want to learn all I can and try to help him.

Thankfully, the doctor had an opening on a day my mom is in town to stay home with the other boys, so I’ll just have to pull Mikey out of school early and he and I will get a special date together as we trek up to Wexford to learn about his wonky eyeballs.

Hovering

The weather has turned warm again, and this means outdoor recess at school. I imagine Mikey’s teacher is most appreciative of this! I had to drop off a refill for his medication and I arrived when Mikey’s class was out to recess. I may or may not have planned it this way so I could hide behind a bush and just watch him.

How delicious! To secretly watch my little boy playing with other kids while he didn’t know I was watching. I didn’t stay long, but I saw him acting like a troll on a bridge, moving his body, laughing. That was good for my soul!

Bus Boycott

So we haven’t put Mikey on the bus for a month. Not because of the bully. That seems to have been taken care of. Oh no. We’re boycotting because the bus is so damn unreliable. One morning, it came at 8:37 and we missed it. The next, not until 8:55. This means I had 3 kids (one, an infant) out in the 7-degree winter air for over a half an hour, including walk time, to be down at the stop by 8:35.

Not to mention, Mikey was getting home from school at 4:45 pm. School is over at 3:30 and is 1.73 miles from our house if you go the long way.

It’s insane to me!

Sometimes, if I could get through to a human at the bus garage, we’d learn the bus had broken down and the kids were sitting in the hallway at school waiting. Sometimes, we’d learn it broke down en route and the kids were sitting in a frozen bus on a hill somewhere with no heat.

So, now we carpool with the neighbors.

That’s not entirely true, because we were carpooling. Another kindy kid from down the street would ride with us in the morning and his parents would drive both boys home. Observing that I’m a bit of a trainwreck trying to get my feral sons into the van in the morning, the other boy’s parents called. Apparently, they drive by school anyway. Us giving their son a ride in the morning saved them 15 total minutes. And they offered to drive Mikey both ways if we could just give them a booster seat.

Um? Yes please! It’s probably the nicest thing someone has done for us in a long time. And people do a lot of nice things, because we live in such a wonderful place.

We are hoping to go back to the bus in the spring, but for now, it’s too unreliable.

Re-Sensitized

Ever since getting the all-clear from the allergest, Mikey has been a cautious peanut eater. By this I mean that once every few months, he will agree to eat something that’s been near a peanut.

Yesterday, he sat with Cody on the couch and asked to share his snack–peanut butter pretzels. These, Mikey quickly realized, are delicious. He started scarfing down the peanut butter pretzels, maybe eating a cup? Maybe a cup and a half of them.

And almost immediately, he broke out in a bright red rash all around his mouth and complained of itching. We gave him Benadryl, and he pretty much talked about itching until bedtime 2 hours later.

A call to the on-call allergist fellow (how awesome is it that we live in a place that has pediatric allergists on call??) revealed that apparently, kids can get re-sensitized to peanuts even after passing a scratch test. Even after getting bloodwork that showed no allergy to peanuts.

The current thinking is that kids need tiny, frequent exposure to peanuts (she said something like one peanut a week) to maintain…I can’t remember her word. Immunity doesn’t feel right, but I’m in a dither.

Anyway, we ran in for an emergency epi pen prescription and I’m back on red alert. I’m to maintain “strict avoidance” until we can get in with Dr. G. This means school is a minefield again. We have nothing in place anymore!

Our cupboards are filled with peanuts. I freaking subscribed to peanut butter on Amazon. Most days, the only food Alex will agree to eat is peanut butter sandwich. I’m not ready to go back to scrutinizing labels, keeping an epi injector on me at all times, harping on school to get kids to wash hands after lunch and before touching communal materials.

And, of course, Mikey has gotten used to eating school lunch, which I can never guarantee is peanut-free. So I’m anticipating meltdowns over packed lunch. Which, of course! I have to PACK.

Lesson learned: There’s always another shoe and it’s always going to drop.

Bus Bully

The worst thing in my world happened last week. Mikey came up to me after breakfast and said he doesn’t want to ride the bus anymore. This seemed jarring, because my kids love vehicles and public transportation. Mikey was way into the bus prior to this. I began to question him. Did someone say something? Did something happen? Was there a MEAN PERSON????

Eventually, he said that yes, a girl was saying unkind things. He refused to elaborate, but when I asked him if he felt embarrassed to talk about it, he asked me what “embarrassing” meant.

“Well, embarrassing is…if you think about it, you get hot and there’s a lump in your throat and you feel uncomfortable.”

“Yes. Then I’m embarrassed about it.”

Killed me! Just killed me dead. Of course, this happened on a Saturday, so I couldn’t really do much but simmer about it over the weekend.

I did, however, call up the parents of another kid from the bus. I asked these parents to ask their son E if he saw anything. Well! E was relieved to be given permission to talk about it. He offered up right away that some big girl was saying mean things to Mikey.

E couldn’t elaborate entirely, except he did say she teases him for picking his nose. But he was very worked up telling his parents how uncomfortable it was to have this older girl saying mean things to Mikey.

We spent all weekend assuring Mikey that telling a grownup was just the right thing, that he has every right to be on that bus and to ride safely. We also talked about how bullies often feel bad inside (their love lights are dim, to use Montessori lingo) and they think being mean to other people will make their love light burn brighter, except it doesn’t work that way. But we should feel sad for this bully.

Monday morning, when the bus arrived, I marched right on board and looked pointedly at the row of faces and told the driver, “an older girl on this bus is saying mean things to my son. Please keep your ears tuned!”

Then I started a series of fruitless phone calls…people at the bus garage just were NOT listening to me (kept assuring me my daughter was in good hands), the social worker at Mikey’s school wasn’t returning emails or calls. Distraught, I got Cody involved.

He contracts with the bus garage for some of his really, really big events for work and he has a “guy” high up. Cody’s guy took our concerns very seriously, and said he’d drive Mikey’s return route that day personally and find out what was going on.

Meanwhile, Mikey got called to the office to tell what happened. We’d prepared him that this might happen. He thought maybe the bully was named Lucia, so Lucia was hauled in to the office. Mikey said, “she’s not the bully!” but Lucia corroborated Mikey’s tale and told them the name of the actual bully, who was then off the bus for a few days.

So far there haven’t been more incidents, but it still rattled my kid. My five year old kid. He won’t wear certain hats because “the bully doesn’t like those,” like he doesn’t want to provoke her.

I’m just so, so angry that some asshole kid took some of the sparkle out of my son’s eyes. Mikey is a nerdy, smart kid. He’s going to be teased mercilessly, I’m sure. You should see him running in gym class wearing a necktie. I just didn’t think it would all start so soon. He still sometimes sleeps on his belly with his butt up in the air. But I know he’s no baby, not anymore.

Air Cloud

Mikey and his friend have invented a new unit of measure: air cloud. Air cloud is more than infinity, you see. Because infinity can’t just be infinite–there MUST be something more. Thus, air cloud.

A grownup friend was at our house the other day discussing how her son has a gazillion Legos. Mikey said, “Oh yeah? Well I have air cloud Legos.”

For homework today, Mikey had to write a number sentence (whatever the hell that means). His was, “Mikey had air cloud Legos and someone gave him 7,000 more. How many Legos did Mikey have altogether?”

In sort of related news, Alex calls the plows “snow clouds,” so when one rumbles past, Alex yells, “there’s the snow cloud.”

And Mikey counters, “No. Air cloud. Air cloud is more than infinity.”

“No! It’s a snow cloud, MIKEY!” And then they hit each other while I hide in the kitchen eating chocolate chips.

Discharge

Mikey has graduated from wrap-around services. Officially, they use the term “discharge.” It didn’t feel like a discharge, though. We had a party! His last home visit with our BSC, Mikey was in charge of the whole plan. His ideas ranged from a trip to the bowling alley to “let’s sit on the couch and watch Lego movie.” Ultimately, we went to the grocery store and bought some fancy cookies and then played Guess Who.

Oh, and then we went out for hibachi.

At school, he barely noticed that S was gone, although he had started talking to her when she was there and deigning to suggest he was happy to see her. In front of other people, even!

Part of me was terrified of this day, that as soon as it happened we’d experience a dramatic setback and I’d be on my own. But now I know that even if something happens, I have a wonderful support system I can rely on.

Plus, any time in the next year, I can call up our agency for booster sessions with our BSC if necessary.

Truthfully, things have just been fine. Meeting with our wrap-around team is now one less thing we have to do each week. The void has been filled by Mikey having to read out loud for 15 minutes each day. And that? Well, the other day he said, “Did you know I can read inside my head? I just look at the words with my eyes.”

Next chapter, indeed.