In my last blog post, which was about 10 days ago, I said:
"Today's post has a more 'upp' tone...
This is the term I began to use because it's what I see, when I see the word 'support'... after I really allowed myself to embrace the fx community..."
The uppdate was about H's recent interest in Play-Doh (& why that is so very significant in our fx-sensory-processing-disorder world).
Although this post is completely unrelated to that, it is still pretty upp there...
So overall this school year has been rough-- one new challenge after the next. I would say that grade 2 has had a lot of number 2 because unfortunately it has been sort of shitty.
If you are a follower of our online world here, then you already know about the significant number of school staffing changes this year & how that alone is enough to throw Hayden off... & you probably remember the new transportation issues... & you are likely familiar with our on-going quest to find an appropriate treatment balance for H. This is something that is trial & error for all people with fragile x.
Well last week we had our first progress meeting of 2014. The participating team members included his Gen Ed teacher, the Special Ed teacher, the ST (although OT & PT were not available), a familiar behaviorist, & the case manager.
Lately, trending topics of concern have included gym, lunch, & recess: 2 out of 3 are part of his daily routine, & even more noteworthy, 3 out of 3 are among the various settings where he is integrated with the other children (so need I spell-out the importance of that).
As luck would have it the issues with gym are different than the issues with lunch which are different than the issues with recess... but one consistent descriptor is agitation. That is definitely a frequently used word in the parent-teacher communication journal: "H was agitated during..." or "H was agitated when..." or even the occasional "H was agitated for most of the day..."
This breaks my heart & I am not going to pretend otherwise. However, we are working on various techniques to remedy all of the above mentioned, & I am grateful that during Thursday's progress meeting we had a productive discussion of ideas. I am typically happy if I can walk away with one positive note when we have these meetings... that's all I hope for.
Well, within the first few minutes of the meeting there were two positive notes. By the end of the meeting, a whole friggin list:
1. He volunteered & correctly answered a question during science
2. For the first time this school year he called the Gen Ed teacher by his name
3. He is now answering questions with the speech therapist 75% of the time
4. He is beginning to participate during hands-on science activities
5. He is able to respond to category questions. So for example, off the top of his head he can appropriately name 3 things that are the same color
6. He is beginning to finish sentences & social stories accurately, as they are read to him in the book
7. When offered a description (similar to 'I Spy' style), he will usually guess what the teacher is describing
HOLY NUMBER-TWO, RIGHT?!
But in order for you to even begin to understand the way my heart felt by Friday afternoon-- I need to recap what his week looked like:
Monday: This was Day Three (following Saturday & Sunday) of easing into the new medication regimen. But no school that day due to MLK holiday.
Tuesday: Day Four: Early dismissal due to the weather. Plus, he was definitely under-the-weather as well, with a lot of congestion. Both factors likely contributed to his agitation.
Wednesday: Day Five: His day was off-schedule again (an easy behavior trigger), because more bad weather meant school was on a delayed opening. He had a tough time during lunch & recess.
Thursday: Day Six: This was the first time in a week that he had a regular full day. They reported that he seemed a little tired but more so in the morning, & the afternoon was OK. But just a side note, the fragile x community lifted my spirits on Thursday anyway because a little something was published on the NFXF site :) (The link will open in a new window but you can check it out after... I'm almost done here...)
So anyway, that was how things stood through Day Six. I was anxious to see how we would close out the week.
Friday: Day Seven: Instead of recapping, I'll just show you what it said in his Parent-Teacher Communication Journal:
"Today's post has a more 'upp' tone...
This is the term I began to use because it's what I see, when I see the word 'support'... after I really allowed myself to embrace the fx community..."
The uppdate was about H's recent interest in Play-Doh (& why that is so very significant in our fx-sensory-processing-disorder world).
Although this post is completely unrelated to that, it is still pretty upp there...
So overall this school year has been rough-- one new challenge after the next. I would say that grade 2 has had a lot of number 2 because unfortunately it has been sort of shitty.
If you are a follower of our online world here, then you already know about the significant number of school staffing changes this year & how that alone is enough to throw Hayden off... & you probably remember the new transportation issues... & you are likely familiar with our on-going quest to find an appropriate treatment balance for H. This is something that is trial & error for all people with fragile x.
Well last week we had our first progress meeting of 2014. The participating team members included his Gen Ed teacher, the Special Ed teacher, the ST (although OT & PT were not available), a familiar behaviorist, & the case manager.
Lately, trending topics of concern have included gym, lunch, & recess: 2 out of 3 are part of his daily routine, & even more noteworthy, 3 out of 3 are among the various settings where he is integrated with the other children (so need I spell-out the importance of that).
As luck would have it the issues with gym are different than the issues with lunch which are different than the issues with recess... but one consistent descriptor is agitation. That is definitely a frequently used word in the parent-teacher communication journal: "H was agitated during..." or "H was agitated when..." or even the occasional "H was agitated for most of the day..."
This breaks my heart & I am not going to pretend otherwise. However, we are working on various techniques to remedy all of the above mentioned, & I am grateful that during Thursday's progress meeting we had a productive discussion of ideas. I am typically happy if I can walk away with one positive note when we have these meetings... that's all I hope for.
Well, within the first few minutes of the meeting there were two positive notes. By the end of the meeting, a whole friggin list:
1. He volunteered & correctly answered a question during science
2. For the first time this school year he called the Gen Ed teacher by his name
3. He is now answering questions with the speech therapist 75% of the time
4. He is beginning to participate during hands-on science activities
5. He is able to respond to category questions. So for example, off the top of his head he can appropriately name 3 things that are the same color
6. He is beginning to finish sentences & social stories accurately, as they are read to him in the book
7. When offered a description (similar to 'I Spy' style), he will usually guess what the teacher is describing
HOLY NUMBER-TWO, RIGHT?!
But in order for you to even begin to understand the way my heart felt by Friday afternoon-- I need to recap what his week looked like:
Monday: This was Day Three (following Saturday & Sunday) of easing into the new medication regimen. But no school that day due to MLK holiday.
Tuesday: Day Four: Early dismissal due to the weather. Plus, he was definitely under-the-weather as well, with a lot of congestion. Both factors likely contributed to his agitation.
Wednesday: Day Five: His day was off-schedule again (an easy behavior trigger), because more bad weather meant school was on a delayed opening. He had a tough time during lunch & recess.
Thursday: Day Six: This was the first time in a week that he had a regular full day. They reported that he seemed a little tired but more so in the morning, & the afternoon was OK. But just a side note, the fragile x community lifted my spirits on Thursday anyway because a little something was published on the NFXF site :) (The link will open in a new window but you can check it out after... I'm almost done here...)
So anyway, that was how things stood through Day Six. I was anxious to see how we would close out the week.
Friday: Day Seven: Instead of recapping, I'll just show you what it said in his Parent-Teacher Communication Journal:
(When I got to the part about the hugs I needed to wipe my eyes.)
There was also a P.S.:
I think if I get a note next week saying that he did well in recess, too, I will probably sob altogether. But for now, like I said, this is pretty upp there.
I know next week is going to be crucial as far as continuing to track his progress & we could very well get hit with another snow storm & therefore have more disruption in routine... but if a little motivation can go a long way, just think how far this could take us.
And not for nothing he was pretty great today despite being snowed in again while Dan was sick, so therefore 1/2 of the parental committee was stationary on the couch & under a blanket all day (which does not help things for anyone).
But overall this polar-vortex-insanely-snowy winter... is definitely beginning to look upp.
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