Author: Melissa

Follow-up visit.

Melissa

This morning we had a follow-up visit with the developmental pediatrician who has prescribed Monkey’s medication. 

He looked at the weekly reports that the teacher has been filling out.  He was impressed with the depth of information that his teacher provides, she adds explanatory notes rather than just rating Monkey on a scale of 1 to 3.  He asked us what we’ve seen at home and it matches up with what the school has seen.  Monkey is making more sustained eye contact and his verbalizations are clearer, more on topic and he’s combining them in new and longer variations.

Monkey hasn’t exhibited any reactions to the medication.  He is, at times, more emotional at transitions but not terribly so.  He’s still sleeping well, except for this week because he has a cold and wakes up coughing at least twice a night, ugh.

We had him on a “tiny” dose, we’re going to double it and switch to the extended release formula.  We didn’t start with the extended release form because it’s a capsule rather than a pill and we needed to split the pills.  Next week is April vacation week so we’ll have lots of time to observe him for any changes in behavior or appetite. 

Though the changes we have seen are not earth shattering they are worth celebrating.  The increased eye contact has been particularly nice, I didn’t realize how little true eye contact he made with us until we saw the change.  It still startles us at times to find him looking at us so intently when we are talking or playing.  I’m excited to see what happens next!

The budget passed!

Melissa

The new integrated kindergarten classroom will be established in September of this year!  Nothing is official until we have that IEP in hand with the placement but since the room was sort of designed for him, lol, and he’s been on the list since the fall of 2008…we’re feeling really good about where he’ll be spending next year!  Woot!

Yet another episode of “What is he saying?”

Melissa

Monkey has a new word or phrase that he is trying very hard to get me to understand.  When he’s on YouTube he will put the cursor in the text search box and ask me to search for…I kid you not… “pissbear.” 

He can’t show me a picture of it, I’ve asked.  When I say “Pissbear?” He just says, “Yes, please” and smiles at me.

I really can’t wait until he masters this one, lol.

Oh, lookee lookee!

Melissa

I’ve mentioned this company, I See Me!, a of couple times (here and here.)  We love their books and they totally won some customer loyalty with the ABC book they made just for Monkey.  I just saw that they have some new ones.  Just in time for Monkey’s birthday, lol.  Yippee!

And, to be clear, I’m not affiliated with the company in any way and I am not being compensated for this post.  🙂

Busy, busy weekend.

Melissa

This past weekend was easily the nicest weather we’ve had since last summer and we took full advantage of it!  We really needed all that sun to dry up the 12 inches rain that fell in March.  I thought we might start growing gills if it hadn’t let up!

Saturday was supposed to be a “lay around and be lazy all day long” sort of day but Monkey had other ideas.  Almost from the moment I woke up he began asking to go for a ride on the “blue train.”  Normally if he asks to go someplace he will quickly change his mind once I agree but I didn’t want to risk it this time so instead I gave him lots of reasons why we couldn’t ride on the train.  And he kept eliminating those reasons while continuing to pester me, lol.  He showered, he got dressed, he ate lunch, he put on his Crocs and grabbed my sandals even.  D.E.T.E.R.M.I.N.E.D. 

Duhdee thought this was hilarious and blamed my family for the behavior.  He is kinda right on this.  I think my mom would agree that there is one particular member of my family who, once he gets an idea in his head, is relentless in pursuit of it. *cough*Dad*cough*  This is one reason Duhdee rarely tells me no when I want something, he’d rather not listen to months of reasons why we should do exactly what I want.  He just skips to the inevitable.  So, you can see why he thought this was so funny 🙂

We had a few errands to run and I hoped that I would be able to convince Monkey he would enjoy our plans just as much.  You probably won’t be surprised to learn that after our first errand of the day (dropping books at the library) we found ourselves being dropped off at the nearest T station while Duhdee did the rest of the errands by himself.

The subway system in Boston has 4 lines, the Red Line, the Green Line, the Blue Line and the Orange Line.  We rode ALL FOUR.  It didn’t take as long as it might seem, we were able to do a loop in about 2 hours.  We then caught a bus (another favorite of Monkey’s) home.   He loved every minute of the trip.  He was saying “Hello, how you doin’?” to everyone, lol.  He sat in his seat with a huge grin on his face and kept telling me what train he wanted next.  Fortunately, his plans matched up perfectly with the route I wanted to take.

After our ride we played in the yard which, I have to say, I had promised him 4 hours earlier for AFTER we ran our errands.  Punk, didn’t run any errands and got to play in the yard.  Who told him I’m an easy mark? 😉 We all went to the local farm store where we visited with the llama (with severe dental issues, you just have to enlarge that photo, lol) and the chickens, including peeps!  Very exciting for both Monkey and I.  After dinner we walked the dogs.  Unsurprisingly, Monkey was out like a light shortly after we got home.

Sunday morning, around 5:15, we were woken up by a little Monkey standing by our bed with an egg.  “Look!  Egg!  Awwww!” as he hugged it to his cheek.  Duhdee managed to get him to go back to bed but 30 minutes later he was back again and we knew we were beaten.  Monkey was thrilled that the “bunneh” had been to our house and hugged every single egg.  When we asked him what was in the egg, thinking he’d open the egg to see, he told us “baybee pen-guin!”  He wasn’t too disappointed to find that it was “only” candy and no baby penguins, lol.

Sunday afternoon, Great Grampy came up for a roast.  Monkey was a little anxious about Grampy being in our house but the second Grampy left to go back downstairs Monkey was hot on his heels, lol.  He and Duhdee hung out downstairs just long enough for me to clean up all the left-overs and dishes…hmmmm…that sounds a bit suspicious now that I think about it!  Bums.

Sunday night was another walk with the dogs but this one was interrupted by a nasty encounter with an off-leash lab.  Copper took the worst of it but he seems to be mostly OK, a little sore.  Monkey was terrified.  I think we’re going to have to find a different walking route, I don’t see how we’ll ever be able to convince him to walk past that house again.  Bugger, it’s the nicest way to get to the pond :-\

I think that’s it…well, except for the cleaning but no one wants to think about that part now, lol.  I’ll upload more pictures once I convince Monkey to share “his” laptop with me.  *Ahem.*

We got the IEP and it’s good!

Melissa

I read through it carefully last night and there was not a single unexpected item in the entire document!  So very exciting! 

The bestest thing?  In every location where it was appropriate, it was marked that Monkey be in a regular education program with special education supports.  He’ll be pulled out of class no more than 20% of the time for ST, OT, AT and PT.  By making one of his OT sessions a push-in session instead of a pull-out he moved from the 40-79% tier to the 80% tier. 

This is important only because the district has poor record of including special needs students in the regular education classrooms.  There is a disproportionately high number of students placed in out of district settings and in substantially separate classrooms given the district’s size.  They are trying to make changes but not everyone is on the same page and as we move from IEP team to IEP team we’re going to need to be able to prove that he’s progressing in these settings. 

We’re going to get resistance from the administration and from teachers at times because we aren’t interested in taking the “easy” route.  I am sympathetic to the fact that teachers don’t always get the supports they need to be successful but we also know that there are ways to make this work.  I believe that our doing whatever we can to get the teachers the information and support they need is a vital part of our fight to keep Monkey in an inclusive setting.  I don’t think its fair of us to sit at the table and make demands of the district if we’re not willing to work just as hard as we are asking them to work to make this all happen.

I am so glad we’ve fought as hard as we have to keep him in an integrated setting, clearly he is making progress (and lots of it.)  He has a lot to learn from and to share with his peers.  I don’t want any of them to miss out on the opportunity by putting up any unnecessary barriers between them.

Does this pattern sound familiar?

Melissa

I finished charting all of the data that Monkey’s teacher tracks for us on our daily sheets (See HERE if you want a visual) and I’m seeing an interesting pattern.

His “regulation” and “participation” generally rise and fall together throughout the day, as you would expect.  When he’s not self-regulated he can’t fully participate in the learning activities, totally makes sense. 

What isn’t making sense to me is the bigger pattern.  When you look at the data between September 2009 through March 2010 you see 4 or 5 days where he’s on an upswing and then 4 of 5 days when he tanks.  It’s up and down, up and down…and it doesn’t line up with school breaks or anything that I can identify.

So, out of curiosity, do you see this with your children?  It’s remarkably consistent, there must be something behind it.