Brilliant!

I owe Duhdee an e-mail. Why do I need to e-mail my husband ((Besides the fact that we are geeks and generally communicate electronically even when we are both home? Srsly, he will Skype me from the kitchen. Uh huh, rly. Moving on.))? Yesterday, when Duhdee picked up Monkey from school ((Yes, we sent him to school. No fever, no vomiting, no day off. District policy.)) he was handed a packet. Anyone who has a child on an IEP knows that a packet is never good news. BUT! It was Monkey’s progress reports and he is making progress so what was the issue?

The issue was the short note that was sent to all of the families. Effective this morning (so said the note) we are expected to transition Monkey to a staff member AT THE DOOR OF THE CLASSROOM and walk away.  Brilliant! *Blink*Blink*

Er, no?

We’re not opposed to building more independence into his morning routine. We’re not opposed to changing the morning process. We are opposed to changing a transition process that we’ve been using for 3 years ((With admittedly mixed results depending on the teacher, the first planned activity of the day, the phase of the moon, etc.)) with no time to prepare Monkey.

A sudden change in schedule for Monkey is OK on a one or two off basis, he’ll roll with it…but if it continues the boy knows how to put his FOOT DOWN. And the people who pay for it are Duhdee and I. There was a time we couldn’t leave our house without tears ((Mostly Monkey tears but some of mine too.)) because Monkey was so stressed about school that he cried and carried on until he was 100% sure we were not going to school. Words were not enough to convince him, we had to wrestle him into the car and listen to him stress and cry until we drove away from the school. Since his school was in our neighborhood this made MOST trips hell.

So, this morning we showed up at school with not a single clue as to what to expect. What we were met with was his teacher standing 3 feet inside the door with a piece of paper. On the paper were two PECs symbols. After backpack, water tornados. She acknowledged the need for minimizing verbal instructions during the transition. I think this might work, the issue is where do we transition? Stepping over a threshold is very challenging for Monkey in all locations…I don’t think saying good-bye to us and then asking him to step through the door is going to work.

Back to the e-mail, Duhdee wants me send him my thoughts so he can share them with the teacher this afternoon. We don’t want to have another morning of confused, half measures. Fair enough.

I want the transition to happen at a location where Monkey can have trouble without being an object of intense observation. I don’t want people staring at him when he’s already having a tough time. The door to the classroom is already loaded with anxiety in the morning. Other than that I guess I’m open to it. Like I told Duhdee, I don’t want to be the one to assume Monkey can’t do something. Now if I could just figure out where this mythical location is…

No, no, no, no, no!

We have a snotty, congested little Monkey. It started Sunday evening after our day o’ fun and by Monday night he was sounding like a 50 year old man with a two pack a day habit. Hoarse voice, hacking cough. Nice. Then the nose started to run. OMG, we just may drown in the river of snot!

I calmly chugged a quart of orange juice, sprayed myself head to toe with Lysol and ran shrieking every time Monkey asked for “a hug!” ((No, I did not really deny my boy hugs OR kisses! I just carried bleach wipes and scrubbed the drying snot off my cheeks regularly!)) We can handle this! No big deal!

So whyyyyyyy is my face hot? Whyyyyyy do I have this incessant, cough that is building in both frequency and ferocity?

I guess maybe I should have run…or wrapped myself in Saran Wrap, surely that would have worked *sigh*

One note to the Under Armour post…

We discovered yesterday that it pays to be selective in the style of Under Armour you chose. We always choose the compression styles and, from now on we’ll have a second requirement…no front “pocket”.

The style Monkey was wearing yesterday had a “pocket” in the front to accommodate a cup. Monkey loves putting his hands in his pockets so…yeah. Definitely no more front pockets.

In a sign that I was among my peeps yesterday though, when Monkey put his hands in his pants twice in full view of the brunch crowd, I explained the front pocket and everyone cracked up.

Under Armour and Making New Friends

One of the recommendations from the OT at our last visit to the Fragile X clinic was to consider Under Armour for Monkey. Since he benefits so much from deep pressure we thought it had a chance of being really good for him. Of course, if there is one thing we’ve learned, it’s that Monkey often doesn’t much care what we think so it was really a total cwap shoot but we decided to give it a try.

We found an Under Armour outlet in Kittery and stocked up. We bought short-sleeved shirts, shorts and one pair of pants. We thought the shorts had a better chance of success but we wanted to try the pants too.

Two weeks into the trial, one of his teachers commented how much better he was doing at circle time. Instead of needing constant reminders to stay seated he was able to stay on his own! Circle time has always been a challenge for him because of the need to stay still and the fact that it’s always language based activities…not his strength.

A month and a half month into the Under Armour experiment and Monkey was so relaxed during story time that he began laying down and even staying there for a few minutes once the other kids get up. I don’t think you can explain this huge change in such a short period of time by saying it was just him maturing.

So, what does this have to do with making new friends? The result of a more relaxed Monkey is that he’s better able to make social connections. He is more tolerant of the busy, busy boys so he’s spending more time with the boys rather than his previous preference for the girls and their quieter play. In spending more time with the boys, relationships are developing. He talks more about the boys at home and on the way to school. He goes out of his way to be sure that his friends have what they need in the classroom (gathering lunch bags or other items before they leave the classroom) and he even has requested a play date with a classmate.

This morning we saw evidence of how much this friendship is being reciprocated. We were running late ((How do ALL the alarms in the house fail on the same morning?!?)) so we met two of his friends in the hallway as they took the attendance sheet to the office. They greeted him with big smiles and he returned the greetings. Everyone had moved to “morning meeting” so we had to rush to get Monkey set up to join them. Monkey had a hard time with this change and was really struggling. When it came time to “check in” by moving his name tag onto the wall with all the other kids who were in class, he missed the velcro. The tag fluttered to the floor and Monkey ran into the coat closet. He was stressed out and we knew we had to stop with the verbal prompts.

Just then the boys returned from their errand and one of them took a look at Monkey, stressed out and hiding in the closet, and then he noticed Monkey’s name tag on the floor. He didn’t ask what was wrong. He didn’t seem concerned at all. He just decided to help. He picked up the tag and put it on the last open spot on the check-in board, smiled at Monkey and moved on giving Monkey the space he needed to join the class. Just then, from the circle, we heard the teacher ask if the class had any questions they’d like to ask about a classmate. One of the boys raised their hands and said he had a question about Monkey.

I turned to look at the group, prepared for the obvious questions about what was wrong with Monkey, why was he upset, why was he in the closet, etc. I was preparing myself mentally to step in and explain how changes in the routine were very hard for him and why, when the question popped out. It was from a little boy in the class who is fairly significantly affected by autism so the question was a little garbled but the teacher was able to get the question out of him. He wanted to know…what Monkey had done yesterday.

That’s it. He didn’t particularly care that Monkey was making a very small scene not 10 feet away. He just wanted to know how his weekend was. I’d tell you how much it means to me to know that these kids just accept Monkey, quirks and all, but I think you all already know.

FWIW, Monkey’s weekend was *great.* It was no big deal, we just went on a successful play date in a new house with all new kids and all new adults. It’s not like that was THE MOST AMAZING THING EVER or anything *SQUEE*

My job for the next hour.

We have a play date this afternoon! I know, traditionally, the play date is for the kids but this one is as much for the parents as it is for the kids. I’m trying to manage my expectations so I can manage my anxiety over this whole thing.

  • Today, I am hoping Monkey will walk into a new house without tears.
  • Today, I am hoping he can find some enjoyment in playing with some new friends.
  • Today, I am hoping my nervousness about how he will do won’t show.

So, my job for the next hour is to be calm, cool and collected. That’s realistic, right?

Quick, someone toss me some coping skills!

Happy Saturday!

This morning around 7 AM my little Monkey woke up and, of course, he came and woke us up too, he’s sweet and generous that way! After we made eye contact, and I think I probably used some sounds that resembled English, Monkey wandered off to his laptop to enjoy some early morning YouTube. I closed my eyes briefly because they were so, so heavy still.

A moment later Monkey came running back in and told me “Money, sweater?” and pointed at my “Walk for Fragile X Syndrome” hoodie that sweet Holly gifted me back in July ((And she did it because she is a kind and loving and generous woman, not at all because she still had boxes of 2010 shirts and hoodies left over, ahem ;-))). I sat up reluctantly because I just don’t wake up that fast, it’s hard to go from drooling to wide awake at…and then I glanced at my clock…HOLY SHIP! It was 9 AM!!!

Monkey had checked in with us at 7 and then amused himself for 2 hours on YouTube!

King of the House.

Normally, Fridays are a little rough. Monkey doesn’t sleep as well during the week and by Friday he is just d.o.n.e. with school. By Fridays, I feel the same. This morning, however, he was just full of it ((Me, not so much.)).

When the time came to put his socks and boots on, he and Duhdee sat on the couch. Duhdee handed him his socks then turned to put his own shoes on. Monkey ignored the socks and started to put his boots on his bare feet. Duhdee interrupted and told him to put his socks on…

“Monkey, can you put your socks on? ((Duhdee never learns! We do not ask him if he *can* do something, he will always say NO!))”

“No! Boots on!” As he struggles to get the boot over his foot.

“Monkey, you need socks. Put your socks on silly!”

“No. No.” Then Monkey picked up a sock and tossed it at Duhdee!

“Put your socks on!”

“No. No.” And this time Monkey adds a little head shake (and a mischievous grin) to the mix.

“What are you doing?? Put your socks on!” and Duhdee handed back the socks that Monkey had tossed in his lap again.

“No. No.” Now add giggles to the whole mix from above.

Then Monkey lifts his feet up and puts them into Duhdee’s lap so Duhdee can put the socks on for him.

“Excuse me, who do you think you are? King of the house?”

Monkey’s whole face lit up and he chirped “Yes!”

Duhdee put on one of the socks for Monkey and made him do the other. See, I’m not the ONLY sucker in this house.

It turns out, I’m a sponge too.

I’ve started a ton of blog posts lately and they’ve all been relegated to the draft bin. I may finish them some day but I hope I never do. They’re depressing, maudlin pieces of garbage with no redeeming qualities whatsoever. They’re self-indulgent to the extreme. I feel so guilty and it’s all my fault and WAHHHHHHH! Someone slap me would you?

I really hate when I get into these moods. I gradually lose my ability to let negativity bounce off me and I have realized recently that, somewhere along the line, I started sucking it up and absorbing it and making it mine. And? I DO NOT WANT.

There are a couple ways to handle this, my normal withdrawal and hunker down until the mood passes or I can fight back. People who are having a bad day don’t want to hear that they’re dragging the hive mind down, they’ll just think I’m being an insenstive birch ((And, they’d be right!)). So, what to do?

If you haven’t made the connection yet, I’m one of the co-founders of that LINKS group over there on the left, the Fragile X LINKS Group of Eastern Massachusetts. What I’m going to do is plan a series of events to get my Fragile X peeps together…our first is a night out for parents and it is on March 5th. That is a full month away. Take a few hours off, you deserve them. Find a neighbor or friend or family member to sit with the kid(s).

If you’re in the area and have not already signed up for the mailing list, you should because I’ve got big plans for that group. The draft blog posts over there are much more fun than the ones here!