School

Monkey’s assistive tech device, the Vantage Lite, will be shipping early next week!!  Our insurance company is paying for the device (about $7,300) and the school system is paying for the carrying case and the software (about $500).  I am in shock.  After 2 years, 2 insurance companies and countless forms…he’s got a voice.

A tip for any of you out there who need a device and haven’t yet been able to get it covered…it’s being covered as a prosthetic device, not durable medical equipment.  Neat little trick, eh?

Yesterday was Monkey’s end of the year celebration even though he’s not actually finished school for the year.  It marked the end of the year for the peer models, the kids on IEPs will reconvene for summer session in July.

Duhdee and I managed to miss the kids’ performance.  We tried to squeeze too much in too little time and then traffic stopped us in our tracks.  I did not cry but I wanted to.  One of the other parents taped it and is going to send us a copy.  *sigh* 

Duhdee pointed out that Monkey probably did so well, per his teacher and all the assistants and a few parents,  because we weren’t there.  If he’d seen us he would have done what he always does which is to demand to “go home!  Mommy change!”  I still hate that we missed it but what’s done is done.  On the bright side we did get gorgeous sunflower bouquets for the teacher, the assistants and the therapists.  End of the year thank-you’s get expensive when you have teams of people!

The teacher had posted all of the pictures that she’d taken of the kids over the course of the last year on the walls and invited parents to take whatever they wanted.  After a few minutes Duhdee and I realized that if we took all the photos with Monkey in them we’d be taking 3/4’s of the photos, lol, and most of them were of him alone.  Monkey loves, loves, loves his teacher and it looks like the feeling may just be mutual based on the photographic evidence!

Jokingly, we asked her if she’d come with Monkey to kindergarten and she told us that she had, in fact, considered applying for the job but decided her passion is for pre-school.  Darn it!  We are all going to miss her tremendously.

This morning a copy of Monkey’s ABLLS results were in his cubby at school.  I definitely agree with our advocate that it provides great visual evidence of Monkey’s skills.  I also agree with his teacher that it shows his strengths and weaknesses very effectively. 

So what’s the problem?  We were just given the score sheet (not the technical term, I’m sure) which is what we had asked for.  So, again, what’s the problem?  The score sheet doesn’t tell us what questions were asked for each skill so while I know what categories the results are for I don’t have specifics.

I should have known better.  When have I ever been satisfied with anything less than alllll the information I can get my hands on?  The answer to that, should you be new here, is never.  Duhdee’s going to have to ask for the full test results.  All ninety-six pages.  At least I know what I’ll be reading for the rest of the week…

Sometimes when we talk about Monkey with co-workers or other parents it’s really clear that we reside in a totally different world.  Sometimes it makes me a little blue to be honest. 

On Thursday, I was quickly wrapping up a project meeting so I could leave for Monkey’s IEP meeting when a co-worker asked if it was like a “PTA meeting.”

Heh, no.  So, while I stuffed papers into my bag and thanked people for coming, I explained what an IEP is and she said…

“Oh!  How cute!”

I stopped in my tracks, turned to look at her and…laughed.  Several people stared at her like she had two heads but how can you not laugh at that? 

My response was, “Not really. It’s kind of a pain in the ass, actually.”

So, the IEP meeting we expected to be “meh” was anything but.   The biggest piece of news came about 2/3’s of the way through the meeting when the AT evaluator arrived with The Device.  ((FYI, it’s the SpringboardLite, he will get the VantageLite in July.))  That’s huge but the other parts of the meeting were even better and I am saying that sincerely not sarcastically, as I am wont to do.

We did not spend hours going over the reports that they had written which is typical of these meetings.  I’ve never really understood why they would write a report, present it to us 48 hours in advance and then proceed to read it to us at the meeting.  I know they have to do the first two but it seems like such a waste of time reading them aloud at the meeting.  It is primarily why our IEP meetings tend to stretch unnecessarily into 3 hour marathons.  So we skipped it.  They assumed we’d done our homework and we had.  We’re suck-ups that way.

Each of the evaluators started by asking us if we had any questions about what they’d provided.  We didn’t really have any questions.  The reports were all very well written which shouldn’t be noteworthy, given the fact that they’re written by teachers, but it is.  I’ve been shocked by some of the reports and IEPs we’ve seen in the past.  Hello, spell check anyone?  (Cheeses priced!  My thoughts always run this way…as do my conversations…another reason that our IEP meetings tend to stretch unnecessarily into 3 hour marathons, ahem.)

Back to the subject at hand.  The reports were well written.  They started with the assumption that we’d read them and we just jumped right to the question and answer sessions.  They each made sure to hit the highlights of the reports.  We asked his teacher to take some additional notes and write up yet another letter for our developmental pediatrician.  I think we’re going to try to skip to the Focalin sooner rather than later since Monkey’s emotional fragility has not eased.  In fact, he was so emotional last Friday that the teacher worried about him all night.  She called us on Saturday to check on him.  I love her.  He was fine.

I mentioned that the reports were a bit depressing, the numbers are not what any parent wants to hear.  1 percentile ranking in skills is heartbreaking no matter how many times you’ve seen it.  What was amazing to us though was the reason for this.  Want to know why the numbers were low?  Because for the first time ever, in his life, he was able to tolerate standardized tests.  He sat through entire tests and remained focused.  He didn’t melt down.  He sat down for long periods of time and responded to direct questions.  Totally unprecedented.  They didn’t even plan on using standardized tests when we talked in April because no one thought he’d ever be able to handle it.  And he DID IT!  I am so amazed and proud of him.

They also used observations of him in the classroom and knowledge they possess because they have been working with him directly for 2 years now and included that information in the reports as well to give a more accurate picture of his abilities since the standardized tests did not.  Both the ST and the OT commented on the fact that there were lots of times when they couldn’t give him credit for an answer because he didn’t quite do it correctly even though he understood what they were asking.  For example, there was a picture of a kitchen with lots of forks hidden in it.  He was told to circle the forks.  His fine motor skills are enough of a struggle for him that drawing the circles was taking up way too much of his focus so the OT had him POINT at the forks and she marked them.  Twice she had to mark him as giving incorrect answers because he pointed to a knife once and a spoon once but she didn’t want to mark it down because even though he’d pointed at it, he’d done so while shaking his head no.  He told her they weren’t forks but because he touched them she had to record them as incorrect responses.  See why standardized tests suck?

The teacher had also administered the ABLLS, we’ll be getting a copy of the results soon…she forgot to bring them.  She was AMAZED by how well he did.  He is showing huge gains in his skills in all areas and there are a lot of “emerging” skills that we’ll work toward mastering.   She also noted that he’s made huge gains in his pre-academic areas.   His pre-literacy and math skills have made big jumps in the last two months so she had to re-write some of his goals. TWO MONTHS!

So, the percentile rankings…meh…we knew that they wouldn’t give us a good picture of his abilities but the very fact that he could sit and take them is amazing.  He’s showing huge gains everywhere.  He’s even started talking in SENTENCES this week.   I wish all our IEP meetings went like this!

Monkey has a freaking assistive tech/voice output device.  Holy crappen!

We have been discussing this issue since…hmmm, let’s see…June, 2008!  TWO YEARS!!!  Several times we thought we were close only for it to continue to drag on but at today’s meeting the Assistive Tech trainer/evaluator had  a “loaner” device for him to use, until his device arrives in July, IN HER HAND.  An actual, honest to goodness device…I was so shocked I didn’t even look at what it is, lol.  She did say that it’s the older model of the VantageLite which is what he’ll be getting.

AND, AND, AND…my insurance company is paying for it.  Stunning.  Simply stunning.

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 shades ((At least one of my HS peeps will remember this brilliant idea.)). **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.