School

Well, that sucked.

Melissa

We just dropped Monkey off for school. I commented last week that Mondays are generally a little tough because he, quite frankly, doesn’t want to go back to school. He would much prefer to stay home in his PJs with his dogs and…I can’t argue with him. I’d rather do the same. BUT, we joyfully head off to school each Monday with a grumbling, unconvinced Monkey in tow.

This morning we had the added fun of a nasty winter cold. He has a cough and a runny nose but no fever. He doesn’t feel great but he doesn’t meet the school’s guidelines for staying home either which are fever, vomiting or diarrhea…so. Off to school he went. I did mention to the teacher that conjunctivitis is apparently making the rounds since Monkey is prone to it and to please watch him for any symptoms but I don’t think that’s an issue…and trust me when I say that he was so upset about going to school I would have jumped at a chance to take him straight home.

We eventually left him and I made Duhdee sit in the car out in front of the school for 15 minutes. Another mom who had been in the room when we left came out and reported that Monkey was fine, he’d gone to sit on the couch with a blanket. Uh, have you met our hyperactive Monkey? That is not a good sign! After she left I ran in to the school office and asked them to call the classroom to check on him. The assistant who answered said he was fine and was playing in the sand table ((Oh, that’s going to go well with a runny nose!!!)) so I could do nothing more but leave.

Now, I’m at work and still worrying about my guy. He’s fine. I know they wouldn’t have kept him if they thought he wasn’t but…my Mommy guilt doesn’t seem to be accepting this today. *Sigh*

A delicate balance.

Melissa

We’ve been walking a really fine line here at Chez Monkey for a while now. Since Monkey’s AT specialist passed away, actually. We’ve been trying to deal with the sadness we feel at having lost someone we really liked. Someone who was always such a huge advocate for Monkey within the IEP meetings and, also, with our insurance company. She managed to get my insurance company to pay for a $7,000 device for Monkey when the policy stated they’d cover $750. After our deductible. So…she was pretty much a miracle worker. AND she was nice and funny and so completely dedicated to her students. She would e-mail us at all hours of the day though we tried very, very hard to respect her “non-school” hours.

On the other side is this, Monkey has a $7,000 voice output device that is nothing more than a weight in his backpack. The AT specialist passed away just a week after she locked down the device so thoroughly that we could not even turn it off. We had not received any training on the device at all. The teacher and classroom assistants had not received any training on the device at all. There is no plan to integrate it into his day. The district had two AT specialists but we found out after E’s passing that the other, had quit, possibly weeks before. No one will say.

So.

Monkey has AT services written into his IEP. The district has no one trained to provide this service due to this terrible loss we’ve all suffered. Currently, the inclusion specialist is taking the 30 minutes a week that belonged to the AT but she has no idea what she’s doing. The device maker did set up training for yesterday (which I couldn’t make) so that is a step in the right direction but that is the result of Duhdee taking the lead, not the school.

I’ve been waiting for the district to come up with a plan but so far nothing has been put forth. I don’t want to make this into a “thing” but it’s quickly headed in that direction and it makes me sick to my stomach. I don’t want to have to call my advocate and call an IEP meeting to work out compensatory services. I don’t want to have this fight when there is a much bigger fight looming this spring over placement…there is no inclusion classroom in the district for 1st or 2nd grades and that is where Monkey belongs.

I guess this isn’t really about what I want though, is it? This parenting gig never is. It’s about what Monkey needs. I’ll be making that call to the advocate now :-\

He’s ahead of schedule.

Melissa

Monkey is ahead of the game this week at least in regards to his weekly fade. He typically starts the week a little rough, it is hard to go back to school after a weekend, right? But he’ll rebound and have a good Monday (minus the AM transition), Tuesday, Wednesday and Thursday. By Friday, he’s tired and it shows. 

It’s well documented that he doesn’t get as much sleep on school nights as he does on vacations despite the fact that we keep the same sleep schedule and routines day after day after day. He just DOESN’T sleep as well. He has trouble falling asleep despite the medications and he has trouble staying asleep. So. Friday mornings are a whiny mess but he makes it through and generally does OK…maybe resting a little longer at story time than normal but nothing outrageous.

Today, you may have noticed, is only Thursday.

Today should have been an easy, peasy drop you off and “see you later” kind of morning. Unfortunately, Monkey was whiny and dragging asp. He wanted me to carry him to the car. “Not today, we’re going to ….?” “School.” He wanted to ride the train, pweeease?? “Where are we going?” “School.” He wanted me to carry him to class. “Monkey, you’re too …?” “Heavy.” (Not really but I only carry him as a very special treat when he’s being very good.)

Once we got to class he was tearful, wanting lots of hugs, wanting us to stay. He’s exhausted. I really just don’t know what to do. He’s on meds for his ADHD that typically results in drowsiness but it doesn’t seem to help him fall asleep. We use melatonin sometimes but he gets used to it after a while and we have to take a “drug holiday” because it no longer works. The Dr. we see will just have us chart again and the numbers aren’t awful. He loses 30 minutes or so of sleep but that ADDS UP and by the end of the week he’s wasted again.

This week is probably worse because he did have last week off. It’s just so sad to make this little guy chug through a day when I know exactly how miserable he is. No one ever promised it would be easy though.

Where’s Karen? I need a “suck it up, buttercup.”

Tada!

Melissa

On Monday Duhdee reported at dinner that Monkey’s teacher had needed to use a “very firm voice” with Monkey that day. Uh oh.

The “firm voice” is a big deal. It, the promise of a time out and, on very rare occasions, an actual time out are the only disciplinary measures we’ve ever needed with Monkey. They’ve only ever used the “firm voice” at school. Each time we get a report, it’s that rare.

Duhdee told me that Monkey had gotten a mouthful of water from the water fountain and then SPIT IT on the floor! Fortunately, Monkey was staring at his plate and didn’t catch my struggle not to laugh. WHY would I be tempted to laugh?

We watched this on Sunday…this scene in particular…twice.

All I wanted to know was, did he say “Tada!” too? ((Of course we did NOT laugh and we did talk very seriously about the fact that we do not spit water at school.))

Have you heard of the Logo Reading System?

Melissa

We’ve had the pleasure of attending several Fragile X related conferences over the years and the Logo Reading System developed by Marcia Braden has been mentioned more than once. I’ve looked at it but we’ve never gone any further than that, Monkey was still pretty young. Now, however, I’m thinking we should ask the school to consider it. Why the change of heart?

Monkey has demonstrated before he recognizes logos. Dunkin Donuts for instance, but really, that’s not a shocker…we are frequent fliers at Dunkins! But over the last two weeks we’ve been hearing more and more from him. He’s “reading” logos. Yesterday alone we heard Geico, Bank of America, Fox, CBS and Sprint…also a bunch of numbers. Seven! One! Nine!

Anyone want to guess where we saw all these? Hmmm, this last one will tip you off. NFL.

LMAO, who said football wasn’t educational?

If only T K was this easy.

Melissa

We are not fans of Mondays here at Chez Monkey. I was in super-duper, extra slow-motion because I was up until 2 AMchatting with some WICKED awesome friends, two of whom seem to live in this place called C-A-N-A-D-A. Neat, eh? ((Don’t be jealous, they’re teaching me to speak Canadian.)) And, yes, even the morning after I can say it was sooooo worth it! I highly encourage other moms raising kids with FX to set up Skype dates with other moms. It is a great, FREE way to connect with other parents when you might be isolated either by distance or some other circumstance. You can even set up group chats.  It’s tons of fun. Do it!

Monkey was in super-duper, extra slow-motion because…that’s what he does when he doesn’t want to go to school. Which is daily so not really that big of a deal because we build time into our morning to accomdate that ((Please don’t tell him that or he’ll find some new way to derail the school plans!!!)) but on days when I’m running slow too, suddenly all that built in time disappears…and then some. I wish I knew how that happens because it sucks!

Anywho, we were both moving slower than molassess ((Much, much slower than molassess in January for sure.)) which ratchets up the stress in the household. Perfect for a Monday, eh ((SEE, I’m practically Canadian already!))?

When it came time for putting on shoes and jackets he was starting to get worked up. The faster we move the more upset he gets, sound familiar? I finally have everything ready. His hat and gloves packed because it’s 51 degrees here this morning but it will cool off later, his Vantage Lite, his BEE folder, his jackets…let’s go, let’s go, let’s go.

Then he stopped moving. “Money, skart?”

“What? We have to get going bud, let’s go.”

“Monneeyyyy, SKART?”

“Uh?” (thinking WTF is a damn skart??)

“Money, skart? Wrap up?”

Ohhhhhhhhhhhh! “OK, Monkey, I’ll put your scarFFF on. Ready?”

And, he was. So, fine, it is 51 degrees out but check out them mad vocab skillz!

Now they are in for it.

Melissa

Yesterday, during free play time, Monkey made a major discovery. He is tall. Tall enough to open the latches on the supply closets in his classroom where the teacher just happens to store all sorts of really cool craft supplies and snacks…

This might not not have been a huge deal if his teacher had noticed first and redirected him but noooooo…his classmates were the ones to notice this new development and they quickly decided to exploit it for all it was worth. “Hey! Monkey, get me the ____!” And Monkey, obediently got the _____. “Monkey, can I have the _____?” Yep, sure looks that way!

The teacher allowed the game (also referred to as “controlled” chaos) to continue because she didn’t want to break up the social interaction. SUCKER! There is NO way Monkey or the other kids are just going to forget about this. Here’s hoping she spent last night practicing her “firm” voice or she may discover she’s lost control of her classroom.

Loss.

Melissa

When Monkey returned to school on Monday after his Thanksgiving break, we were told that one of his specialists had passed away very suddenly, and completely unexpectedly, last Wednesday. She had been scheduled to see Monkey that day but she’d called to inform the teacher that she was sending a substitute because she wasn’t feeling well. Even as she was headed to the hospital she was concerned about my little Monkey and how this change would affect him. She wanted him to have advanced warning that a new person was coming to see him. That’s a perfect example of why this amazing, kind-hearted woman will be so sorely missed by my family and hundreds of others in the school district.

She first evaluated Monkey when he was 3 and she has been on his IEP team ever since. She has been at almost all of our IEP meetings and we knew we could always count on her to be sensitive to us as parents of a child with special needs. We knew, without a doubt, that she always had Monkey’s best interests at heart. At some of the worst IEP meetings, she was the only person I could stand to make eye contact with and address directly. She knew way deep down how hard all of this was on parents but she never let us skirt the difficult issues. She was, in fact, the only person at the school who was ever willing to bring up the possibility of Monkey never learning to talk. She did it in a way that was so kind that I wasn’t able to get even a little bit angry or defensive. When we acknowledged that it was a possibility but that we wouldn’t let them give up on it yet she smiled at me in a way that made me feel like she was proud of me.

As sad as this is for us, it’s so much worse that she left behind a small child. My heart is breaking for her son and for the rest of the family she left behind. I wish there was a way to convey to them how very much she meant to us. She gave Monkey a voice. How can you ever truly thank anyone for that? I hope she knows that she changed his life. I hope she knows how much we love her for that.

Sure, a school performance sounds just *perfect*…

Melissa

When I was younger I hated school performances. I always felt a little sick to my stomach before any school concerts and I once passed out on stage during an performance of one of Aesop’s fables. It involved me wearing a hairy ape glove/mitten. I really just don’t know. All I do know is I was carried/dragged out of the assembly, up the stairs to the principal’s office and left laying on a cot until my mom showed up. It felt like a lifetime.

But, I hear you all saying, who cares? This is about Monkey, right? GET TO THE GOOD PART! And I am, geeze, I’m just saying I have more than a little sympathy for my Monkey and his dislike of performing.

Anyway, this morning was the Thanksgiving performance for the kindergarteners at Monkey’s school. The first I had heard of it was yesterday and I woke up in a cold sweat last night over it. Srsly. When we dropped Monkey off at school today we told the teacher we would be at the performance but we were going to try to hide so Monkey didn’t see us, it just makes him anxious. It took all my willpower not to tell her to let him skip it.

We’ve seen this type of performance in the past on a much smaller scale and it never goes very well. Monkey hates to be the center of attention and his reaction to praise is never what people expect…and clapping…fuggedaboutit. And this is what happens when he performs in front of a dozen parents in his classroom. This time they were performing in front of several dozen parents in the school auditorium. See why he should have just skipped it??

But, I bit my tongue and sat in the darkest part of the auditorium with Duhdee hoping he didn’t see us, that he didn’t scream when they had to force him into the room, that he didn’t cry and fall to the floor when he got to the front of this huge, scary space filled with strangers who all had cameras and cell phones and who were snap, snap, snapping away and moving around and talking and laughing and *sigh*.

Then the other classes came in. Every child was wearing a paper hat of some sort to correspond with their song or skit. The parents were nuts, clogging the aisles taking pictures and standing up and yelling at their kids to get their attention. Yeah. This is going to go soooo well. I had to force myself to stay in my seat and not run out to the lobby, where I could hear his class as they prepared to enter the auditorium, and tell his teacher to let him skip it.

His class entered last and it took me a while to find him in the group because I was looking for the screaming kid with amazing curls and no hat and there WASN’T one of those. There was, however, an adorable boy holding hands with his OT, wearing a feathered hat and looking around with BIG eyes. Huh. That one was mine alright. They all took their seats on stage with as little fuss as is possible when you’re dealing with kindergarteners and Monkey was doing fine. WTH?

The teacher took all the kids to a “pen” on stage and they recited a poem about 12 little turkeys. The first little turkey ran away. As soon as the words were out of her mouth Monkey broke away from the group and went tearing across the stage as fast as his legs could carry him. Uh oh. Oh, wait, that’s what he was supposed to do! He even got a few laughs because, really, he is that damn cute. Also, he looked scared…and his eyes get really, really big when he’s scared. He looked more like an owl than a turkey to be honest.

During the rest of the performance he sat nicely with his OT and cat called his teacher. He kept yelling “Miss. ___, c’mere!” Fortunately, in a room full of rowdy kindergarteners he didn’t stand out at all, lol. By the end of all the performances with all the singing and clapping and waiting he was ready to go home but he seemed to bounce back once the popsicles started flowing.

I’m glad I managed to ignore my “sympathy stage fright” in the end and let him do his thing with his buds. I wonder if I’ll remember this next time we have he has a performance?