We are an anomaly, but we are not crazy.

We visited with the developmental pediatrician this morning.  I spent last night poring over the daily reports we get from the teacher.  I had been a little worried that maybe we were only seeing a change because we expected to, you know?  I always second guess myself 🙂

Our daily reports are a chart, Monkey is rated on a scale of 1-4 on his participation and his regulation for each part of the day.  Participation captures things like how focused he was and how on topic his words and actions were.  Regulation captures his flapping or other stimming and his emotional stability.

So, we get two numbers for circle time, art, gym/playground…even lunch.  A 1 means he is participating or regulated 0-25%, 2 is 25-50%, 3 is 50-75% and 4 is 75-100%.  The teacher also has space to fill in details about what they were doing during each period and how he reacted to it.  It’s an awesome tool, our Ed. Advocate is brilliant.

I used the numbers to get an average of how he did before he started medication, when we were on the 2x a day med, when we were on the XR med and how he’s done since.  Then I charted them because I’m visual like that.  And we get this:

OMG, living with a geek has rubbed off! 

I did not realize how much he had improved, even on the XR formula.  I think his teacher would be surprised too.   I also expected his regulation to drop off more sharply than it did.  I’m thinking that his negative behaviors (whining, jumpiness, racing around) were so much more noticeable that we focused on them more and didn’t recognize that he was making progress still.

So.  The last time we doubled the dose and switched to XR, we’ve decided to keep the higher dose but try the 2x/day formula again to see if we see less of the side effects.  The Dr. told us that he has seen another boy that reacted to the XR formula just this way.  His theory is that some kids need that sudden jolt of medication to calm their bodies down, that the slower time release just doesn’t have enough kick.

We’ll gather more data and go back in another month to discuss the results.  If we’re still seeing the side effects on the 2x/day formula we’ll probably switch to Focalin.  My insurance company doesn’t like to pay for Focalin because it’s so much more expensive but I think we’ll have a good case for it if we try this and it doesn’t work.  *Fingers Crossed*

***

Also, (yeah, there’s more) the teacher’s notes on his daily chart noted a “significant decrease” in eye contact when the XR release started and an increase in off-topic language.  In looking at them I noticed an increase in the number of comments that he was emotional or distracted and a change in how she described them.  We went from “a little” emotional or distracted to “very.”

Tomorrow…

Tomorrow morning we have yet another follow-up appointment with our developmental pediatrician.  We’re going to have to tell him that…oh, wait…did I forget to mention this?  We stopped giving him the medication weeks ago. 

Once we switched from the initial twice a day formula to the extended release formula all the benefits seemed to die off and a major drawback emerged.  Monkey was noticeably less focused in group activities and very, very, very, emotional.  He would sometimes cry to the point of nearly vomiting.  Not good.  So, we stopped.

I have lots of information I need to put into my excel spreadsheet so I can graph it for the doctor.  I guess I better get started on that.  I can’t believe I may be pulling an all-nighter1.  *Sigh*

  1. See!  NOT a grown-up 🙁 []

Fragile X Conference

I wanted to be sure no one missed this.  I don’t think many people go back and read the comments to old posts!

Susan says:

As a native Detroiter I am thrilled to welcome all of the FX community to our area. I would like to make a few suggestions if you find yourself with time to step out of the awesome conference events.

  1. Check out the Detroit Insititute of Arts – it is magnificient. I loved it as a child and appreciate it as an adult.
  2. Lots of great expensive and not restaraunts around downtown including Greektown.
  3. Eastern Market is a Detroit insititution and really fun; farmers, music, food and people watching.
  4.  The Detroit Zoo is about a half hour from downtown and is one of the best.
  5. The Henry Ford (you’ll have to look at the website; too much to list here).
  6. The tunnel to Canada; the bridge back.
  7. Walk along the Detroit River front and you will see Detroit around you and Canada right across the river.
  8. There are several entertainment venues downtown; check for who/what is happening.

Much more but you’ll be kept pretty busy with the impressive conference offerings and again. We’re exciting you’re coming our way.

Thank you Susan for the suggestions!

Also, the preliminary agenda is available, there are now tentative days/times for each of the conference sessions.  Check it out here. (pdf file)

I’m not a grown-up.

I am not going to provide links, you can pretty much read any of my entries and you’ll see that I speak the truth.  I’m overly emotional, I throw hissy fits and my sense of humor is decidedly juvenile.  SOME day I’ll be brave enough to post this colon cancer article I saw ages ago…no, colon cancer is not funny but the picture they included?  Hilarious! At least to someone who’s sense of humor is remarkably similar to her teenage nieces and nephews.

Anyway, what I am intending to confess is this, last week I posted this entry.  And I said…

The ride up was fun.  Monkey was in the back seat chattering away to himself.  Once in a while he’d direct a comment or question to one of us.  The general theme of the conversations centered on the fact that we were going to “Grammy’s home!” 

What I left out was the parts of the conversation that had me laughing so hard that I was shaking.  I nearly cried from the effort to keep Monkey from seeing my reaction.  The parts of the conversation that all started “God!  Holy CRAP!” (exclaimed with perfect intonation, no less.)  He was one very happy Monkey.  Everything was so amazing and so exciting to him, I just couldn’t find it in me to correct him for his language. 

Also, if I’d turned around he would have seen how hard I was laughing and he would never have stopped saying it.  He did eventually stop, once some of his excitement wore off, and there have been no repeats.  *Pout*

All good things must come to an end, unfortunately.

**No, this is not a post about the Lost series finale!  I stopped watching Lost 4 seasons ago because we missed recording ONE episode and I didn’t want to skip it.  Then, they never replayed it so…no more Lost for me.  OK, that’s kind of weird, isn’t it?  It seemed perfectly logical at the time.**

Anyway, I’m speaking about this past weekend.  It was very, very good. 

We enjoyed the great weather, worked in our garden, played in the yard and generally lazed about.  Although, I’m pretty sure planting a garden does not count as “lazing,” it is tremendously relaxing for us so I’ll go with it.  Monkey, of course, is a huge fan of anything that allows him to spend hours and hours in the yard playing ball, digging in the dirt, watering anything that holds still long enough (actually, it doesn’t even need to hold still based on how wet his cloths were…he sure as heck never stopped moving), playing with ants and with worms (which he pronounces with his own unique accent…woym or woim is the best I can do to spell it.)

All of our much loved seedlings are now tucked among a layer of straw, happily spreading their roots in the garden.  They seem to grow as we’re watching, it’s amazing.  Our peas, which we planted weeks ago, grow inches every day.  We had to redirect them back onto the trellis twice yesterday to keep the vines growing up and not grabbing on to their neighboring vines!

The only part of our weekend that wasn’t exactly pleasant was Sunday morning.  It started Saturday night, I filled the dishwasher and turned it on.  It made an odd noise, as if there were air bubbles in the line but it seemed to be otherwise OK.  Sunday morning I put all of the dishes away so we could have french toast (mmm, yum!) and then I realized that the bottom of the dishwasher was full of nasty, nasty water.  Cwap!

I had to wash almost all of our dishes and all of our flatware by hand because I couldn’t remember what I’d taken out of the dishwasher!  Gah.  Caffeine and then chores in the future. 

We wasted way too many precious Sunday minutes debating whether to repair the 5 year old, loud asp, cheapo dishwasher or to buy a new one.  The repairs won out because I am incapable of making a commitment to a new dishwasher when I cannot find a single model that doesn’t simultaneously get reviews of “Perfect!  It changed my life forever!” and “It plunged our house into the Pit of Despair!”  Add in the fact that I’m so cynical that I nearly always convince myself that the positive reviews are most likely posted by the advertising department of the manufacturer and…fine, we keep the piece of cwap we know rather than buying an even more expensive piece of cwap.

To cheer myself up I bought eight 6 packs of Impatiens while we were at Home Depot.  That’s 48 plants.  It was maybe a few more than I needed but they were on SALE and on SALE always wins over NEED and SPACE.  Always. 

They’ll be gorgeous though.

The homevisit.

So, here is where I tell you all that it wasn’t that bad, everything was fine and I made myself anxious over nothing.  And you can all roll your eyes and think that I totally overreact to everything, God!  I’ll grin sheepishly at you and mentally make a note to do better next time.  I won’t do better next time, you should know that by now, but at least I am aware that I should, right?  Do I at least get credit for that?  **begin school flashback** Do you offer extra credits?  I make awesome custom roller shades1. **end school flashback**

Uh, what was I talking about?  Right, the home visit.  So it wasn’t that bad, it was actually rather funny.  The psychologist is a lot of fun.  She has had some contact with Monkey and knows of his “quirks,”  she thinks he’s funny and she really, really likes him.  Anyone that really, really likes my kid and sees him and not his Fragile X symptoms is awesome. 

The Vineland questionnaire is tedious and it takes forever but it can also be rather funny when you’re scoring a 6 year old.  Some of the behaviors, which would not be funny at ALL if he were older and exhibiting them, are amusing now.  We actually had to answer yes to some of the “maladaptive” behaviors and we still thought it was funny. 

For instance, swearing.  That’s a yes.  But he does it only at home and he uses them appropriately so we don’t make a big deal out of it.  Besides, he doesn’t use the biggies…I don’t even really consider “crap” to be a swear but apparently, it is.  Justify, justify, justify.  In our defense, she was even cracking up when we were telling her the stories.

By the time we hit the end of the survey she was reading all of the questions just because it was funny.  We may have all been a little punchy by then too but there are not a lot of laughs in IEP related meetings so we’ll take what we can get.

Obviously, we don’t have any results yet but Monkey did score above his age range in certain daily living areas.  She told us that she’d never even gotten to ask some of those questions before.  He also scored below average in some areas, fine motor skills still give him grief and probably always will.  I think what we’ll see in his scores is exactly what you’d see with any kid with Fragile X…uneven skill development with some areas of particular weaknesses and others which will be more advanced.

She also showed us a couple of questionnaires she wanted to have his teacher complete.  At the last full team IEP meeting I brought up the fact that there were certain tests I didn’t want done.  Essentially standard format IQ tests.  He won’t do well, it won’t show his strengths and weaknesses and the number that comes out will not give you a complete picture of who Monkey is and what he’s capable of.  Most reasonable people understand that but there are some who latch onto the number and can’t see anything else. So, I’ve clarified my position, I don’t want to micromanage the evaluations.  Questionnaires are fine.  I trust the reports of his teachers and therapists. 

While I was explaining my issues with IQ tests I brought up the fact that Monkey had been given one and that one person (I didn’t even hint at who this person was because it’s one of her colleagues and I don’t do that to people.  I didn’t even tell her it was someone at the school, I totally get extra credits there!) had latched onto a number and challenged everything we’ve worked so hard to get for Monkey educationally…just out of ignorance? stubbornness?  a pure hatred for being challenged in any way??  Probably some of each.

It turns out that I didn’t need to be so circumspect in my explanation.  I had totally forgotten this but she was at that meeting.  Ha!  Her comment on that whole exchange was “I couldn’t believe that was happening!  It was awful!”  We didn’t imagine it.  We were being attacked.  Yay, I guess?  It’s nice to have someone confirm that we weren’t being over protective and overly defensive.  So.

One last thing and I’ll stop because my fingers are tired.  When we talked about “The Number,” she told us that it clearly doesn’t apply to Monkey’s abilities.  And all this drama aside, The Number isn’t even that bad.  It put him in the “mild” category.  It was just killer for us to hear “mental retardation” applied to our baby.  Even though we knew it was coming…the first time was devastating. 

In fact, I don’t really care about that label anymore except for the ways kids will use it to hurt him.  The things I care about, his happiness, his fulfillment, his ability to be as independent as he wants to be…can’t be quantified.  No one can perform a test and tell us what the future will bring.  We have to assume he will do and be everything he wants to do and be and then do whatever it takes to give him the opportunity.  Even when it means swimming upstream against the doubters.

  1. At least one of my HS peeps will remember this brilliant idea. []

Fun, fun, fun!

We have a home visit tonight for the 3 year IEP evaluation. The school psychologist, who chairs Monkey’s IEP team, will be coming over to administer the Vineland.  90 minutes of pure fun, I tell you!  Gah.

The whole home visit thing cheeses me off, actually.  First, the school psychologists do not do home visits for all of the kids in the district, just kids on IEPs.  I wonder what people would say if they started doing home visits for all the kids in the district based on other criteria, like socioeconomic status, for instance.  I’m thinking that wouldn’t fly. 

Second, the idea may be to have a chance to observe Monkey in an environment where he is most comfortable but his comfort level drops to ZERO when there is a stranger invading his space (and she is a stranger to him.) 

Third, and finally, duuuuude, I don’t like strangers invading my space either.  I want to go home, put on my ‘jamas (to stop Monkey’s inevitable freak out) and chill.  Instead, I get a stomachache all afternoon because of the anxiety over the whole deal.  Some of the anxiety is the social anxiety I deal with all the time but add to that my deep-seated need to excel in all tests…

I get freaking test anxiety and I’m not even the one being tested.  Pitiful.

Fun with YouTube.

I’ve mentioned it before, Monkey is a fan.  A big, BIG fan.  We started with a few favorite clips and then he taught himself how to navigate to other, completely unrelated, clips.  Most of them have been appropriate…trains, cartoon clips, kid’s movie clips, people riding in elevators, monster trucks, etc.  Lately he’s been asking us to search for specific clips and his latest search request is… “Mommy.”  How sweet is that?

What I love most about that search is that this is the clip he is looking for…

You can’t say he lacks a sense of humor!

So, we had this “thing” yesterday.

We didn’t call it a party.  It was simply a gathering of family and friends sharing presents, snacks and cake (with 6 candles on top.)  I did ask him a couple times if we could have a party (while in the midst of one, shhh) and, as my nephew can attest, Monkey walked away without giving me the satisfaction of a response.  Dissed by my own 6 year old, nice.

The ride up was fun.  Monkey was in the back seat chattering away to himself.  Once in a while he’d direct a comment or question to one of us.  The general theme of the conversations centered on the fact that we were going to “Grammy’s home!”  That was a new phrase, we called Grammy from the parking lot of Dunkin’ Donuts so she could hear it herself 🙂

The not-a-party went great!  Monkey was amazingly social, chatting and interacting with lots of people.  Everyone was amazed with his improved vocabulary.  He was happy and mischievous…basically your average 6 year old boy.  Yay!

I got to visit with people I hadn’t seen in a while.  Monkey was so good that I was able to relax and just let him be.  In past years one of us has had to shadow him constantly to keep him from doing or grabbing something he shouldn’t.  There was none of that this year.

Monkey got a little overwhelmed on the 2 occasions when all of the attention was directed at him…the opening of presents and the blowing out of the candles.  He was able to pull it together pretty quickly to finish opening gifts.  We did let his 5 year old cousin, Munchkin, open the last two boxes of clothes we’d bought because he was NOT impressed by clothing, lol.  It took him a little longer to bounce back after blowing out the candles (and we didn’t even sing!) but once Duhdee slapped a piece of cake in front of him, he was happy.

The ride home was also fun!  It was nearly bedtime before we left for the 2 hour drive home but Monkey did not get fixated on whining “Home! Dogs! House!”  Noooo, instead he spent the ENTIRE ride yelling “Mac!  Wait!” at all of the 18-wheelers we saw on the highway.  There are a lot of 18-wheelers on the highway, btw. *Twitch*

We finally bought a new digital camera so I will have lots and lots and LOTS of photos to share.  I do need to go through the hundreds of photos and pull out a few dozen.  I let Munchkin use the camera for a bit and Grammy W. made me promise to delete some of the tons of photos she had taken of her, lol.  There’s also a really flattering one of my butt that needs to go…that was actually my cue to take the camera back.  I may have a totally inappropriate sense of humor but there will be no butt-shots shared here. 

If I had managed to get one of my niece’s butt when she MOONED me, at my 6 year old son’s birthday not-a-party, in front of her grandparents and her great-grandmother…I would have had to share that one…on Facebook at least 😉  I love my family.