Author: Melissa

It’s time for a cuteness dump.

Melissa

I was telling a friend of mine some Monkey stories yesterday and she advised me that we should just follow the boy around with a video camera so we could share the cuteness. She is a wise woman. I wish it were possible, I would do it in a heartbeat if I didn’t have to, you know, work.

Speaking of work. The new job is responsible for the lack of posts these days. I love it, the work is challenging and actually makes a real difference to my clients. It’s not endless busy work that was made up to satisfy a client that can never be satisfied. It’s amazing. I no longer hate going to work everyday…just some days…but that’s normal…I think. Anyway, the result of all this challenging, meaningful work is that I have so much less time for sharing all the awesome things my Monkey says and does! For that, I apologize.

OK, enough about me! No one comes here to read about my exciting life as a paralegal! Moving on now…

We are big, big Christmas people. We started decorating the day after Thanksgiving and, as of Sunday, I think we’re finished ((This is assuming I don’t see anymore Christmas decorations that I just MUST have. Sometimes that happens. Actually, that happens a lot soooo we’re probably not done but let’s just not tell Duhdee or he’ll take away my debit card!)).  Everything will stay up until New Year’s Day unless our tree decides to shrivel up into a pile of twigs and needles ((Please don’t do that!)).

Since we have been decorating we’ve been talking lights and ornaments and trees but we haven’t talked a lot about Santa yet. Monkey has been filling in that gap for us. There is a Santa that my amazing mother-in-law gave us that Monkey had, in the past, eyed rather suspiciously. You see Santa has this big fuzzy beard and, wait…let’s throw in a visual.

Here he is:

So, with Monkey’s sensory issues, you can see why this guy might be eyed suspiciously. I mean, that beard could jump out and touch him at any second! This was not Monkey’s favorite decoration but this year he’s warmed up to the big guy! First, he started out saying, “Hi, Santa! Hi!” every morning…he still does this. Then he started sometimes yelling out “Hi, Santa!” from other rooms. He’s just a friendly kid that way.  Last night he walked by Santa and said “High five, Santa” and he TOUCHED Santa! He high fived him. Unreal.

Ugh! I’m out of time…now I feel like a tease promising a cuteness dump and only getting ONE of the four cute stories from the last 3 days out. Next time, less talky, more bullet points!

It’s kind of hard to follow a post like that last one.

Melissa

Things aren’t much changed. We still don’t know why and likely never will. We’ve talked with Monkey about it but it’s hard to know what he understands. We’re trying to be careful to use very precise language so we don’t inadvertently scare him. We have discussed how sad we are. He has listened and offered no comment. I think it’s time we leave the topic alone now unless he brings it up. We’ve kept the teacher updated on what we have told him just in case she hears something from him at school.

We’ve moved on to preparing for Christmas over the last week. The house is almost completely decorated. Duhdee has a couple little things to add to the outside decorations but I’m flat out of places to hang lights. We have gone completely nuts here decorating. The last two years we ran out of time and energy and just never seemed to get it all together. This year we started the day after Thanksgiving and by the end of the weekend we were 80% done. I started my Christmas shopping Thanksgiving day too. Instead of venturing out on Black Friday I took advantage of the online sales and got the worst of it done. (Yes, worst, I hate shopping!)

Monkey, as usual, has been a huge fan of the Christmas decor. He’s all about “Santa” (last year it was just “Ta”) and the “Angel” (last year I don’t think he even had any word for it!) Earlier today, he and Duhdee were playing with an app on Duhdee’s new Android phone, that interacts with our home automation system, and turning the lights on the Christmas tree on and off. Geeks. Then Duhdee showed him that they could ALSO turn on the lights in the front windows too. Monkey took one look and said, clear as day, “Would you look at that!” which was then followed by a series of “Yay!”s which we could mostly hear over our own laughter. This boy is just full of surprises.

We’re so lucky.

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.

I am thankful…

Melissa

…for parents who taught me that rewards come to those who work hard and sacrifice in the short-term.

…for in-laws who love and accept me unconditionally.

…for grandparents who have always made time for me even though I’ve not been very good about doing the same for them.

…for friends who have known me for years and still like me.

…for friends who are just getting to know me and still like me.

…for amazing neighbors who’ve made this corner of the big, bad city a home.

…for my husband who is my everything.

…for my son who brings me such joy every day.

…for each and every one of you reading this.

Your support has gotten me through some really awful moments and made sweeter moments that much sweeter…thank you.

I hope you all have an amazing Thanksgiving.

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?

We have the coolest teacher!

Melissa

Monkey’s teacher is the bomb. She was the perfect person for this new pilot classroom! Not only does she have the required dual certifications, that was a given, but she has something else that’s not something you can be taught as readily…she is flexible. Of course she has her lesson plans and a schedule for how a day will go but she recognizes spontaneous learning opportunities and jumps on them eagerly. Very impressive in a teacher who’s leading her very first classroom, no?

This morning, Monkey wanted to bring a ball in the truck. I asked him if he wanted to show it to his best bud and he ignored me. That is generally as good as a “No,” so when we got to school I was surprised to see Monkey getting out of his seat clutching the ball. He told me “bounce” and said his friend’s name! OK!

I had to carry the ball into the classroom because the temptation to throw it during that transition would have been too much for him to resist. I wanted to encourage this social exchange but I did want to stop short of creating a circus. Like I said, I LIKE his teacher, lol.

We realized that his friend wasn’t yet there so I continued holding the ball while Monkey checked in to class. One of the other kids asked why I had a Buzz Lightyear ball and I explained that Buzz was Caleb’s favorite cartoon character. Any chance to teach them about my little guy is taken advantage of!

Just then, Monkey’s friend ((I really need to give him a blog name!)) arrived! Monkey’s teacher, to whom I had already explained what was going on, was so excited by all of this that she decided to reward Monkey and his friend with some impromptu ball play in the small, fenced yard they have attached to the class! I asked the teacher if she wanted to keep the ball for the day and she was thrilled.

When we left they were going out the door together and I heard her telling the other kids they would ALL get a chance to play with Monkey because he is “such a good sharer.”

So, yeah, I think I sort of ended up creating that circus after all but, fortunately, his teacher was willing to embrace her inner Ring Master. I love that in a teacher!

OH! Another reason I love his teacher? Yesterday, at the PARENT TEACHER CONFERENCE, when Monkey was walking around with a sandwhich bag on his hand talking about picking up “poot,” she suggested we give him some fake poop for Christmas, LMAO. How could I not love this woman?

The PARENT TEACHER CONFERENCE.

Melissa

You know how sometimes I let my excitement or, more frequently, my anxiety get away from me and I build up these totally innocuous occasions into SITUATIONS and then I come back here and just say, “Meh”? This is totally not one of those times!

This morning we had our first ever official PARENT TEACHER CONFERENCE! I did not cry and I did not hug the teacher, I was way too mature for that. Nope, not me. I simply GUSHED over how excited I was and how I couldn’t believe we got to attend a PARENT TEACHER CONFERENCE and how cool it was that there was no attendance sheet! I’m such a smooth operator. Everyone was laughing at me but I so don’t care!

The teacher waited me out (she was just sitting and nodding and smiling at me with her BIG eyes on) have I ever mentioned how much I love her? Not nearly as much as my little Monkey but I think she’s just super.  Anyway…once my verbal barrage slowed to little squeals of excitement she shared her thoughts on Monkey and how he’s doing. Do you want to know how he’s doing? OF COURSE YOU DO! ((Wheee, I may still be on a bit of an adreneline rush!))

He’s doing awesome! They can’t believe what big changes they’ve seen in him since school started. He’s settled into the routine, he knows all the kids names and at circle time he’s the one whispering the answer behind his hand to the kid who can’t remember, lol. At lunch time, he knows everyone’s lunch boxes and distributes them appropriately. He was the first kid to master standing in a line (this is one of those skills he demonstrates at school and not anywhere else that I would LOVE to see him generalize!)

He has an infectious laugh and the kids are drawn to him. When he starts laughing everyone stops to see what he’s laughing at because it’s going to be good.He’s so sweet and gentle that the typical kids in the classroom have no reservations about interactingwith him. Some of the other kids with disabilities in the class are not quite so calm and collected so there’s a bit of anxiety and uncertainty over engaging in play with them. The staff is working on this and are very aware so I have a lot of hope that allthe kids will be more fully integrated and accepted by the end of the year but it really, really, really made my heart soar to hear that the other kids like Monkey and want to be around him and engage him on their own. Yay!

She had two pieces of work to show his current level of functioning. One involved tearing paper, gluing it to a picture and then coloring the rest of the picture and the other involved matching pre-cut shapes with shapes printed on the page and gluing them in the right spot. Would you be shocked to hear that Monkey doesn’t excel at either of these activities? He did fine, both were done appropriately but he needed a LOT of teacher support. Gluing and coloring and matching…sure he is physically capable of doing those things so theoretically he should be capable of doing those things on his own but here’s the question…why? What is the point? Monkey, like most boys with fragile x, need activities to have a meaning.

We tried to convey this by telling her that Monkey prefers real-life activities…cooking, cleaning, fixing things. Monkey himself was demonstrating his love of real life situations by walking around the classroom with a small baggie of “poot.” He was talking about walking his dogs and he was pretending to pick up dog poop using little (clean!) baggies he found in the truck that we use for just that purpose. I think I need to find a way to more clearly convey this message to her. I don’t care if he can glue blue triangles onto a piece of paper. He’s done it dozens of times, we know he can…let’s move along. Let’s find richer activities to build skills on.

So, to sum up, Monkey rocks. He’s doing great, learning new stuff and making friends and now I’ll shut up about the PARENT TEACHER CONFERENCE. Mebbe. Hee.

GUESS WHAT! GUESS WHAT! GUESS WHAT!

Melissa

Guess what we’re going to do tomorrow for the first time EVER?

Duhdee and I get to go to our very first…PARENT TEACHER CONFERENCE. Not an IEP meeting! An honest to Betsy PARENT FREAKING TEACHER CONFERENCE! There will be no attendance sheet, no progress report to add to his monstrous IEP file, no one is going to try to pull our placement out from under our feet, no one is going to talk about f*cking measurable annual goals…HECK, there won’t even be a TEAM.  It’s just us and the teacher!

We’re going to be normal parents. Except for the part where I CRY and hug the teacher because I’d totally given up on ever having a normal damned PARENT TEACHER CONFERENCE.

I’m pretty fricking excited about it too…srsly. It don’t take much to excite me these days, does it?

It’s a DOVER!

Melissa

Monkey is going through a very intense YouTube phase. Obviously, YouTube itself isn’t the phase. The child has been obsessed with YouTube for ages, it is what motivated him to learn to use a computer in the first place. The clips he watches on YouTube change as his interests change.

Right now we are in an intense elevator period. I’ve asked before how to use these interests to teach him but it suddenly dawned on me yesterday that I don’t need to do anything to make these educational. He’s learning without any added input from me. Why make flashcards and pester the boy when he’s learning so much, including how to read, just by watching fun videos on YouTube?

What finally made the lesson stick is that Monkey called me over to the computer yesterday, “Money, look! Look!” As I stood next to him he maintained an excited monologue, “It’s a Dover! 23!” (and the elevator was a Dover…the clip title said so…and it did go to floor 23.) “Otis! Parking garage! To 4!” (and it was an Otis elevator in a parking garage…the clip title said so…and it went to the 4th floor). It was this way for clip after clip after clip.

I’ve been listening to him perfect vocabulary words over the last couple of weeks and a lot of them are words he’s heard on these clips and is now motivated to learn. He’s still learning from us, we repeat the words to him over and over and over again in conversation helping in the process, but the motivation to learn is coming from YouTube. I feel so fortunate to live in a time when we have so much technology to help our kids. Even the seemingly pointless technology like YouTube has been such a gift for our boy.