Two days in.

Melissa

We all know you can predict absolutely nothing about the school year after only two days.  This is just a mere update.  I don’t consider any of this indicative of how things will progress, OK?  I’m still fully prepared for year two of unabating school hell*.

So.

Day 1.  Monkey refused to walk into the school.  One of the special education teachers, but not one of *his* teachers, violated the no morning greeting policy before we even made it to the door of the school.  Duhdee tried valiantly to get Monkey to put his feet on the ground but basically carried him by his arms into the classroom.  No number of M&Ms would convince him to do anything more than stand just long enough for a reward before he slithered back to the ground.  FUN!

So we entered the classroom all sorts of strung out.  Convinced Monkey to play in the sink for a bit (his transitionary activity from last year) and then to play at the water table.  We snuck off with our tails between our legs and Monkey went on to have the most AMAZING day EVER based on his teacher’s description.  Monkey was very happy, huggy and giggly at pick up so that may even be true.

Day 2.  Monkey took a few voluntary steps toward his classroom today.  Of course none of them were sequential.  Duhdee still largely had to carry him into the classroom.  There were no chipper greetings this morning.  Thank god. 

Monkey played with bubbles at the sink.  If neither Duhdee nor I were physically touching him he would stop what he was doing and grab for us.  There would be no sneaking away today.  He decided he was done with the bubbles and we set off to look for another activity.  He was not letting go of me yet.  We found playdough.  He sat and he used a toy rolling pin and pizza cutter to play with the dough.  Totally appropriate play.  He was at a table with 3 other children and an adult (we still have no idea who she is, we’re awful parents.)  He let me go.  Once I was satisfied that he was engaged I kissed his head and we waved good-bye.  He didn’t cry or try to catch us so I guess he was ready.  *Phew*  And he was set up for another AMAZING day per the teacher report.  He played with paint (red and blue, it’s on his shirt,) he sat for “focused activities” for longer periods than he did last year, he enjoyed circle time because he recognized the games.  Focused activities and circle time were two big trouble spots last year that were used as examples of him needing more supervision.

So that’s it.  Two days in and he’s done OK.

*I either need to consider some happy pills more seriously or I’m just trying to hold my optimistic side in check, you decide.

 

First day of school!

Melissa

We’ve been talking to Monkey for the last few days about starting school.  We’d put it off because of the IEP meeting issue and not knowing what to prepare him for but, obviously, if we’re not meeting until the 2nd week of classes we needed to prepare him for starting in his previous class.  So, we’ve talked it up.  Duhdee took Monkey to the open house last Friday.  Now we just wait and see.

Hopefully he’s matured enough over the summer that we do not hear any more about the substantially separate classroom. After making so many good gains last year in the integrated classroom I’m incredibly frustrated and angry that this is even a topic of discussion.  I don’t think he did as well as he could have.  I’m an incurable optimist and I think there is always room for improvement but I think that means he should get more support where he is.  I do not think it’s appropriate to move him to a more restrictive environment.

I’m sorry his teacher and the classroom aides felt overwhelmed last year.  I also don’t think it was Monkey that was the cause.  They told us, more than once, that they had a very challenging group of kids.  Some of the “typically developing peers” were struggling and acting up.  They told us, more than once, that Monkey was one of the best behaved kids in the class.

The main issues were his eating of non-nutrative items, his distractability/high level of activity.  Monkey likes to eat bubbles, shaving cream and the water in the water table he does it here and he does it at school.  We’ve tried several ways of stopping this but with limited success.  Any ideas?

Monkey does not stay with a challenging or novel activity for more than a few seconds.  Except for a few favored activities (painting, water play and computer play primarily) he will sit for 5-10 seconds and then run off and wander the classroom until someone goes to retrieve him and bring him back.  He will play again for a while and then wander off again.  No one thinks he’s ready for medication, not his teacher (I asked over the summer), not the folks at the Fragile X clinic and not the psychiatrist we consulted with.  So…any ideas?

One thing we are insisting on this year is that they actually develop a sensory diet.  It was in his IEP last year and they blew it off.  Not this year.  It’s too important.  I’m hoping that will help.  Otherwise I’m just not sure.

I feel as though figuring these things out is their job, this is their chosen career.  They’re supposedly highly qualified to teach in special education classrooms.  But ultimately the responsibility for educating Monkey falls on us.  We’re his parents and we love him more than anything…I just wish I had a ton of experience and training to fall back on here.  I’m feeling a bit alone and overwhelmed here.

Great way to start off a new year, eh?

Just a jam packed day ahead here!

Melissa

First, we need to get out and run.  We took a few too many days off while I was on vacation so now we have to stick to the every other day plan to stay on track.

Then, we are having a cookout with a few neighbors.  There are about 15 of us total.  I made cookies yesterday.  Duhdee needs to prepare shrimp skewers and veggie skewers.  Everyone is bringing something so we should have plenty of food.  Around noon we’ll start setting up tables, grills and the TV so we should be well under way by the time the Patriots game kicks off at 1.  Yay!  Go Pats!  Monkey LOVES football so that should be a big hit.

Sometimes we have trouble convincing him to go into the neighbors yard for these sorts of things but I think the Patriots will be a strong enough lure.  I doubt anyone is going to be able to hear the announcers over his screams of “Yeah! Yeah! Yeah! Balllllll!” though.

Hello Hanna!

Melissa

It’s been a while since we’ve had a serious storm here but that should change today.

An outer band of Hanna was expected to reach the Massachusetts coast this morning, dumping up to 3 inches of rain. That band will move, allowing for a clear day before the body of Hanna reaches the area in the evening, dumping another 3 to 4 inches overnight. The storm is about 310 miles long.

The area will see a sustained wind of 30 to 40 miles per hour, with gusts as high as 60 miles per hour along the coast, said Nicole Belk, a meteorologist with the National Weather Service in Taunton.

We’re under a Tropical Storm warning now.  Joy.

Delayed.

Melissa

The IEP is now scheduled for the end of the 2nd week of school.  I have nothing nice to say about this so I’m just going to change the subject now, OK?

Duhdee and I are now in our 3rd week of training for that Fragile X 5K and I’m feeling really good about it!  The first week was the hardest, not in terms of the training but in terms of the soreness I experienced for days and days after each run.  It’s gotten progressively more difficult in terms of training but easier in terms of how I feel.  I’m never sore anymore.  I’m STARVING the day after a run but other than that I feel great.  Sometimes after we finish our training session we’ll add another sprint just for FUN…isnt’ that crazy? 

Our garden is producing tomatoes like mad right now.  We are using the slicing tomatoes for Caprese sandwhiches and Duhdee copied the Olive Garden’s Caprese pasta dish (DELISH!)  I think next should be Caprese pizza.  I really need to start making my own mozarella.  The cherry tomatoes are eaten straight off the vine or from the bowl on the counter as snacks.  They’re so sweet!  The paste tomatoes are being frozen, Duhdee is going to use them to make pizza and pasta sauces (and maybe even ketchup) this winter.

This was our first year with a real garden, we only did containers before, and it was planned as a container garden so I’m pleased with how it’s turned out.  We have figured out which of the tomatoes we want to keep and which to drop.   Next year is the year of the peppers.  I have Red, Yellow, Green and Purple varieties to try.  I’m excited already!  We’re also going to grow a few different types of lettuce and beans to experiment with.  The year after that we’ll have to try a bunch of peas and carrots…I’ve got two standard varieties for next year but there are so MANY types of everything to try.  It’s going to take a while to find all our favorites.

Just another day

Melissa

I stayed up too late.
I woke up in the middle of the night and did not fall right back to sleep.
I woke up late.
My favorite shirt, the one I had planned to wear today, had a mysterious hole in it.
I had to go to work.

So, it sounds like the start of another typical day, right? Right. And then…

I asked for a kiss from Monkey, and got a great one.
I got another kiss from Duhdee, also a great one.
I blew a kiss to Monkey and said “I love you!” He responded with a wave (typical) and “BYE-BYE” (a first).

Suddenly it doesn’t feel like just another day after all!

Anxiety levels rising again.

Melissa

We have our follow up IEP meeting on Friday.  Why a follow up?  Because the team couldn’t get on the same page at our last meeting in June!  Ugh. 

We are supposed to get the results of the assistive technology evaluation…well, we should have them today, right?  We’ll see, Duhdee reminded the teacher today.  We are supposed to set goals and discuss classroom placement.  On Friday.  He starts school on Monday, I’m so glad we have time to prepare him for this.  His teacher seems to be working on the assumption that we’ll be back in her classroom this fall but at the last meeting that was not what they were saying.  So, it’s anybody’s guess really what will happen there.

We’ve already been informed that his OT, PT and ST are all changing.  The new providers and the old providers are all supposed to be at the meeting.  Plus the teacher and the school psychologist and us and our advocate and…MONKEY.  No childcare available.  So.  Should be a blast.

We have a meeting with our advocate on Thursday evening so we can make a plan.  That’s just about the only thing keeping me from totally panicking.  It really shouldn’t feel like this.

Bee Bo!

Melissa

Monkey has suddenly decided that The Belly Button Book by Sandra Boynton is his favorite book but he has very strict rules for how it is to be read.  First, Umma, Duhdee and Monkey all need to be present.  Duhdee needs to lay on his back on our bed with the book held over his head.   Monkey needs to lay on his back next to Duhdee.  Umma lays on her belly close enough to Monkey so that she can participate in the game.

Once we are all positioned, Duhdee begins to read and Monkey starts the game.  He will alternatively shake his head “no” and nod his head “yes” and Umma is expected to copy him.  He quickly dissolves into giggles and I’m not sure he’s listening to the story at all really except that he does notice if Duhdee stops reading.  I have no idea why it’s so amusing but his giggles are hard to resist.

So are his orders to “lay down!”

Fairly well.

Melissa

So, the trip to the fair went fairly well (awful, I know.) It was a very small affair (ok, I’ll stop!)  There were cows and Monkey did get very excited about them.  He even petted one.  He was a very big fan of the bunnies and even said “bunny” when prompted.  Last year he was very excited about the quads at another fair that a dealer brought to show off but this year he only had eyes for three National Guard vehicles.  When we first arrived I motioned towards them but Duhdee was not interested in being recruited.  I told him all he needed to do was violate the Don’t Ask, Don’t Tell policy and he’d be fine but he wasn’t biting.  Turns out they were not very actively recruiting, I guess they must have met their quota for August! Monkey crawled all over those vehicles and had a grand time.

There were two things about this fair that bugged me…the petting zoo and the elephant rides.  I’m fine with a petting zoo of domesticated animals, I’m not so fine with a petting zoo of what should be wild African animals and I’m also not fine with a petting zoo with primates.  The monkeys were out of reach so really it was just a chance to see them.  The poor things were in a small cage, holding the bars and just staring out.  Awful.  Then we left that area to see a poor, dead eyed, lone elephant being led around (with prompts from the handler’s hook) in circles carrying load after load of kids.  UGH, UGH, UGH!  It should be illegal.

Why is this sort of thing at an agricultural fair anyway?  Aren’t there enough domesticated farm animals to teach about?  Isn’t the whole POINT to show off local agriculture?  Anyway.  We won’t make a return visit to that fair again.  We’ll stick to the true ag. fairs thank you very much.

Oh, I guess there were three things that bugged me.  One of the most popular activities at the fair appeared to be karaoke. I really admire the bravery of folks who get up on stage and sing for hundreds of strangers.  I could never do it.  As a listener, though, alcohol would have helped I think but, alas, it was a dry event.