I am happy to report…

that school drop offs continue to improve!  He’s still not quite getting to his classroom but he is walking to within 20 steps of the classroom door before he needs to be carried the rest of the way.  We’re working at it, hopefully we’ll be in good shape within a week or two.

Of course, our IEP isn’t until Thursday and he may have to change classrooms after that meeting but…let’s not think about that right now!

Tonight we have a meeting with our advocate to prepare for the IEP.  Tomorrow I will be attending a school committee meeting.  Wednesday Monkey goes back to the toileting clinic for a follow up visit.  Thursday is the IEP meeting.  Friday Monkey goes to Maine to spend the weekend so that Duhdee and I can attend the Fragile X related conference in CT on Saturday.  It is a jam packed FX/special ed. related week ahead and I’m surprisingly calm about it.  Weird, but I’ll take it!

So, you’ll never guess what I heard today!

Monkey said “Bear”  several times.  He’s been saying an approximation for some time, generally “Bee” or “Be-ah” but clear as a bell this morning we heard him saying “bear!”  We excitedly told the teaching assistant and she went over to speak to him.  He was, at that time, playing with blocks.  When she asked him if he was playing with blocks, he repeated “block” to her.  She then told us that yesterday, on their way to the park, she had told him not to drop the loop yet (the loop on the rope they hold when out walking off school grounds) and he replied “loop yet.”

Woot!

Two days in.

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.

 

Delayed.

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.

Anxiety levels rising again.

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.

Is Monkey very odd?

So many speech and learning activity suggestions for kids seem to focus on ryhmes and songs.  Monkey is not a big fan of songs though.  He will tolerate my “singing” to some extent but it’s never been his favorite activity.  I’ve noticed that songs on typical pre-school programs (like Backyardigans) seem to trigger him.  He loved the show for a very long time but he began running from the room whenever they sang (which is a lot) and then he decided he didn’t want to watch the show at all anymore.  In his classroom, the singing and movement activities really upset him and he would have meltdowns.  Gradually, he stopped doing that but he will not participate, he will grudgingly stay within sight of the kids as they sing and/or dance but that is it.

It’s not all songs that bother him though.  He listens to music at bedtime each night.  He listens to music in the car (grownup music, we own a few lullaby CDs but that’s it…he listens to what we listen to.)  Last night he had trouble falling asleep and eventually ended up crying.  I let him get up to calm down and he sat on my lap while we watched this, not your typical toddler music.  I was familiar with some of the songs b/c my parents listend to them when I was growing up.  He was fascinated and relaxed in my lap.

I wonder if this is something I should try to “fix.”  I don’t particularly see anything wrong with it but I know it would make his pre-school teacher happy if she could do movement activities with her class without having Monkey protest.  There is no guaruntee that anything I do at home will help in the slightest bit because there are, quite simply, different rules and allowances for Umma (even Duhdee doesn’t get cut quite as much slack as I do, lol.) 

Are there any 4 year old appropriate CDs that your kids like(d) that won’t make my ears bleed?  I’m resigned to the fact that whatever CD we pick we will be bombarded by ear worms (I’ve been singing “Baby Beluga” for 5 days now, ugh)…I’d just like them to be slightly pleasant for a grownup to listen to.  I’ve heard They Might Be Giants have a couple good CDs, I’m not sure who else is good though.  Bonus points for any songs that are standard pre-school fare.  I’m definitely deficient in this area since my parents didn’t play “kid” music for us as we grew up either, I don’t even know what I missed!

I know you are all DYING for an IEP update.

Heh.  I’m so sick of this.  I cried at Duhdee the other day “And he’s only FOUR!” I cannot believe we have…uhhh…too many more years of this ahead of us.

Anyway, I spoke to our advocate and she advised me to call (and e-mail) his team chair.  I don’t know why I didn’t think of this before!  She was not present at the last meeting and I think that’s the fastest way to cut through the BS.  So, I called her and told her that the meeting got off track, that we had agreed to update his goals and add a summer program to his IEP, then reconvene in Sept. to discuss the rest.  I also told her we still haven’t seen an IEP that meets these two (and only these two) requirements.  I told her that I don’t want to sign it until we go back to his February IEP with ONLY these two changes.  I also told her that I don’t want to reject in part, which is our other option if they can’t give us what we had agreed to sign, because we don’t want the Department of Education getting involved (which they would automatically have to do if we reject.)  So, that’s where we are at.

If his team leader can get us the report we want quickly enough we’ll sign it.  If she can’t, I have a list of issues so I can reject it in part and we’ll have to let the DOE get involved which I don’t think any of us want at this point.  There’s no reason we can’t handle this ourselves without mediation.  Either way, we’ll be signing something and returning it to them so that he can go to the summer program.  It’s up to them to decide which route we take.

Our advocate also is now up to speed on what went wrong last week, what we have coming in for reports/information from the Fragile X clinic and I think she understands how far apart we are right now on placement.  I’m glad we have the summer to plan for this, I need a little time to recover from the stress of last week!

***CUE THE ANGELS**** We have an IEP we can sign!  WOOT!  WOOT!

The Fragile X Clinic (Day 1 of 2)

On Thursday and Friday we went back to the FX Clinic for Monkey’s yearly evaluations.  Thursday was the long day, he had a psych evaluation and his OT evaluation, the two were scheduled to last for a total of 5 hours combined with a break for lunch in between.

The fabulous Dr. G conducted the psych evaluation again this year.  Monkey hadn’t seen her since March when it was decided that we had the tools we needed to continue with her behavioral plan.  We did update her in May when the plan finally reached it’s primary goal of Monkey walking into his classroom under his own power.  The room she uses is really, really small.  Monkey normally doesn’t mind it but he was struggling on Thursday for some reason.  I left the room to fill out REAMS of paper evaluations while Duhdee stayed with Dr. G and Monkey.  After she had finished I went back to the room and we discussed current issues and concerns.

We gave her copies of the various reports and IEPs that the school has provided recently.  She had some concerns with the goals that were proposed (and those on his last IEP) because they were too vague.  She wants numbers and measureable goals, not language like “will improve self-regulation.”  She also wants to see academic readiness skills on there, colors, numbers, shapes, recognizing the letters of his name, etc.  She feels like this year was a bit of a waste for him.  He DID make progress, of course, but she feels that if he had been given the proper behavioral supports that he could have done so much better.  She doesn’t want to see that happen again. SO, her report is going to include a lot of very specific goals and behavior related suggestions.

Our meeting with Dr. G ran over so we had to ask the OT to delay the evaluation until we could eat lunch.  Only in Boston is it going to cost you almost $30 for 3 sandwiches, 2 drinks and fruit.  Oh my.  Monkey did eat the tuna salad though which is nice, he’s never been a fan of sandwiches (besides PB&J) so we weren’t sure what to expect.

After lunch I had to go back to work.  The evaluations and the IEP happened at the very worst time possible from my perspective.  I am basically doing the job of two people last week and this coming week.  Ugh.  Duhdee took Monkey to his OT evaluation and he did GREAT.  It was the same OT as last year and she could not believe it was the same kid.  Duhdee left the two of them alone for the evaluation and sat in the waiting room and it seemed to work wonders for Monkey.  One of the goals on last year’s IEP was to build a tower of 6 blocks, the OT left it on the IEP for this summer/fall because he hasn’t met it yet.  He did during the evaluation so I guess we can update that one now.  He has made 5 months of progress in the last 12 months which is a bit discouraging but he is showing so much more maturity.  There are a couple of skills that are holding his score down that were not put on his IEP previously so she is going to recommend those goals for next year.

So that was day 1.  He had a rough AM session but bounced back for the PM session.  We are going to get some great, specific goals from both evaluators in their written reports which we’ll provide to the school.  We should be in good shape for our next meeting.

Day 2 up next but we have a family barbeque today in New Hampshire so I need to get motoring 🙂