Author: Melissa

Shifting names.

Melissa

Once upon a time our little Monkey could not call us anything. Eventually, he learned to approximate the ASL signs for Mommy and Daddy and we were thrilled! As his speech has developed, we’ve been called “Ma & Dee” “Umma & Duhdee” and “Ummai & Honey.” This last variant has stuck around long enough that I thought he’d finally made his decision and was intending to stick with it.

It seems that, once again, I drew a faulty conclusion.  Monkey has once again decided to make a slight alteration.  He’s happy with “Honey” ((Or “EWIK” if Honey doesn’t respond promptly enough.)) but “Ummai/Ummy” is on the way out.  There are worse things to be called and it DOES rhyme with “Honey,” which I think is a nice touch…but…I’m pretty sure I’m the only person in my family who has ever been called…or ever will be called… “Money.”  Srsly.

“Honey!  Money! S’go home!”  It’s especially nice when he throws a little whine into it… “Moneeeeeeeeey!”

This is rather nifty!

Melissa

Monkey has still not mastered writing his name.  His teachers have been writing his name on the back of his work in yellow ink and then having him trace the letters as practice.  It’s a good idea but still leaves him dependent upon the teacher and we are all about independence ’round here. 

Last night, I thought, “Wouldn’t it be so cool if someone…” and guess what?  Someone does!  Check it:

Available here.

R you? Are yar!

Melissa

That translates, in Monkey-speak, to “Where are you? There you are!”  We hear this a lot since there is only ONE Eggy and only ONE Science and no bedtime can run to it’s natural conclusion ((Which, contrary to Monkey’s current belief, is not to lay down, get up, lay down, get up, lay down in Mommy’s bed, get chased back to his room, lay down, get up, lay down, beg for water (and the cup next to him DOES NOT COUNT, btw), look at you like you’re a big piece of offal for yelling at him (which then makes me feel OFFAL, heh, get it?  Awful/Offal! Shut up, it was too clever.), wash, rinse, repeat until his eyes are so heavy he trips over those gorgeous lashes and falls straight into a peaceful slumber for 1.75 hours at which time EVERYONE IS SO REFRESHED THEY MUST RISE AND WATCH YouTube!   At 3 AM! Wait, where was I?  Oh, yeah.)) until both are accounted for and clutched in Monkey’s slightly damp little hands.

Every single night, it seems, we run through this little exercise and, without fail, I start panicking after a few minutes because WHAT IF EGGY AND SCIENCE REALLY DID SPONTANEOUSLY COMBUST??  There is only one Grabbit but we can con Monkey into accepting our cheap imitation Grabbits in an emergency but there is NOTHING, NOTHING that will satisfy Monkey’s need for the one and only Eggy.  Today, at the Fragile X clinic OT/PT evaluation, it was used by the evaluators to get Monkey to participate in the evaluations and he did *GREAT.*  Clearly, this is no mere plastic egg!  His entire future could rest on his bond with this darned Egg ((Why, yes, I do tend towards hysteria sometimes!  Thanks for noticing, lol.))!

We have dozens of smaller blue plastic eggs and we even have a green egg in the exact jumbo size of Eggy but a change in size and/or color is fatal.  No go, send those ridiculous Eggy impostors straight to that Easter basket we still haven’t managed to put back in the basement despite the fact that we walk by it daily.  *SIGH*  Next year that stupid little rodent better bring another (dozen) jumbo blue eggs because I can’t take this stress!

And don’t get me started on Science!  We haven’t yet tried a substitute there.  I am NOT buying another $30 LED lit ant farm ((I know, it was way too expensive considering I hated those little creepy buggers…they made me itch everytime I looked at them and Monkey?  Eh.  So unimpressed.   But the cheap acrylic magnifying glass?  Gold.)) to replace a $2, if that, acrylic magnifying glass!  How else am I going to find an exact match?  I think I’m going to try these first.  If it, uh, “works out” as expected…anyone out there have a use for 12 poor, rejected, little magnifying glasses?

Borrring!

Melissa

That pretty much sums up the last week or so.  After a busy July, we went into hibernation mode here at Chez Monkey.  We’ve been bored and boring, gotta love that!  It’s not often families like ours get to indulge in doing NOTHING!

Our hibernation period is over though.  It was killed by guilt and a return of reality. The guilt is, of course, mine.  It suddenly occurred to me that Monkey is on summer break ((Finally!)) and we have done nothing to amuse him in…days!  I am such an awful mom!  I’ve been torturing him by making him stay at home and amuse himself.  I suck 😉  SO, our “do nothing” weekends are over.  It’s time for the activity director to break out the heavy artillery.  We’re talking train rides, walks on the beach and trips to the zoo…maybe even some ice cream cones and bumper boats.  That will all make me feel better and give me something to b*tch about here when it blows up in my face.  Win/win.

The other bit, the return of reality, is less fun.  First, it’s time for our annual visit to the Fragile X clinic at Children’s Hospital in Boston.  That right there is a solid 3 hours of good old fashioned Fragile X fun.  We have to discuss the whole ADHD medication thing.  We saw some improvements when we started but whenever we try to increase the dosage at all we get lots of side-effects and a loss of the improvements.  It occurred to us, while we were sitting in one of the sessions at the conference, that we maybe should be looking at anxiety over ADHD or at least anxiety in addition to the ADHD.  I don’t know.   It’s a discussion.  Otherwise, I’m pretty darned happy with Monkey’s development.

The other piece of the return to reality is that although summer break has just really started for Monkey, it doesn’t last long.  We only have a smidge over 3 weeks until Monkey goes back to school and we are starting from scratch once again.  New school, new classroom, new teacher, new aides, new classmates, new therapists, new therapy rooms, new cafeteria, new playground, new commute, new e.v.e.r.y.t.h.i.n.g.  And that is always so exciting and positive for Monkey.  *Ahem*

Over the weekend we all drove to his new school to play on the playground.  We thought it would be a fun/non-threatening introduction to the building.  We didn’t want to just take him straight inside because the only other time he was in that building he had a hissy fit ((Duhdee and I were at a parent’s meeting and left Monkey with the free childcare…big mistake.  The provider was actually a familiar person but Monkey did not enjoy the experience.  At all.)).  We played on the playground, they have a very cool water park feature that will be turned off when school starts ((Monkey is not going to like that, lol.)), and I video taped all of it…the trip and the playing…once he stopped freaking out about being in a new place.  Srsly, what parents have to force their children to go to a playground??  Anyone else??  *Sigh*

So with that fun experience in mind we decided to meet with Monkey’s new teacher in his new classroom.  It was really, really hard for him to walk through the door to the classroom, I think it took about 45 minutes for him to manage it.  We sat with the teacher at a table for another 45 minute so he could explore on his own after that and he seemed to enjoy himself.  He’d brought 3 Matchbox cars with him and he played on the rug where they’ll do circle time after he did a few circuits of the room.

The teacher has said we can come back again whenever we want.  We’ll probably take another trip or two in the next weeks.  There will also be two days when school will be in session and the room will be fully set up but *before* the kindergartners start officially and all of the kids in the class have been invited to stop in to visit.  Basically, a 2 day open house.  We’ll be there both days, most likely.  We really, really, really want him ready to learn that first day if at all possible.

Tonight we need to get started editing all the videotape we’ve gathered over the last two visits ((We even had the poor teacher tape a quick greeting, lol)) and create a video for Monkey to watch.  It will show everything from when he walks out the door of our house until he walks into his new classroom.  If anyone has suggestions on songs for a soundtrack that would be super. I don’t really listen to music and this is killing me.  We can’t leave the natural soundtrack because Monkey was whining just about the entire time, of course, lol.

It explains a lot.

Melissa

Yesterday I had the privilege of spending some time with my extended family.  I know I’ve mentioned more than once that my grandfather was one of 12 siblings.  That tends to result in a fairly large extended family.  Once a year, at my Uncle Dave & Aunt Carol’s house, we are all invited to gather to share food, memories and catch up on all the happenings of the previous year.  When I was younger we did not always make it to the event but since Monkey was born we’ve attended each year though it seems we missed 2009.  We can’t let that happen again!

It’s so nice to be able to sit back, look around and realize, “Oh, hey, that’s where I get that from!”  For instance, I know my tendency to say things just to get reactions out of people, preferably to make their jaws drop in shock, comes from my Papa.  He didn’t say this around me but I heard after the fact that he was telling someone about giving his lawn tractor “bl*w jobs ((He was talking about blowing into the gas tank to get it started.  No, I don’t know why this would work or be necessary but there it is.)).”  The question seemed to be, did he know what he was saying or was he trying to get a rise out of people?  If you know Papa, you also know…he totally knew.

It’s also a chance to pick the brains of the older generations.  I picked up a couple potato growing tips from a couple of experts that I’m sure will pay off next year.  Seriously, if they can get 100 lbs of potatoes out of a bag of potatoes going soft and sprouty in the pantry there is no excuse for my pitiful little hauls of 20 lbs based on 10 lbs of fancy pants seed potatoes.  Do you want to hear the biggest tip?  Fertilizer.  Seriously.  It seems like the farmer gene in my family tree has completely atrophied in me.  *Sigh*  Next year.

Monkey really seemed to enjoy himself once he had a chance to settle in.  There were some rocky moments because he’s not always able to join in and play with other kids appropriately but when he stuck to playing ball with some of the adults he did great.  He was happy, talkative and relaxed. The best part of the reunion for me was when one of my cousins ((second cousin, I think)) approached me.  He will be 30 this year and he has full mutation FX.  First,  he told me that he and Monkey both have Fragile X, which I knew.  He asked if he was going to have anyone to help him in school so we told him what sorts of help Monkey gets.  Then he said to me, as he watched Monkey playing, “Don’t worry.  He’ll be fine.”  It’s always good to hear and I know he’s right!

When the time finally came to leave he was very, very specific about where we were supposed to go and how he was supposed to get there.  Fortunately, Grammy and Grampa had no issue with him riding to “Grammy’s house” in “Grammy’s van.”  The only cwappy part of the day was when it was time to leave Grammy & Grampa’s house to go home.  When I told Monkey it was time to say good-bye he said “See ya!” to ME…and then waved me off.  Umm, nope, you’re coming WITH us little man.  That’s when he got mad, burst into tears and stomped out of the house.  Way to make Mommy & Daddy feel good, jeeze louise!

Grammy made some noise about not liking to see him cry but we all know she is thrilled he likes spending time there so much, lol.  Of course she had to admit that aloud too because there was no hiding the smile as she’d said that bit about the crying.  Now Duhdee and I are left wondering how on earth we can manage to give Monkey and Grammy this much needed time together.  It looks like Duhdee and I might have to plan some additional overnights.  Oh, woe is me!

It looks like we finally did it!

Melissa

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?

He’s a sick little Monkey…

Melissa

My poor baby has a slightly red eye and it looks like conjunctivitis, again.  Ugh.  We’ll see what the doctor has to say tomorrow.  I asked him if his eye hurt and he said yes.  I then asked him if a bunch of other body parts also hurt and he said yes, so, either he’s really sore all over or he’s playing me.  Given the fact that he was laughing at me, it could go either way.  What I do know he isn’t faking is the low grade fever.

It’s all just enough to slow him down and make him cuddly.  I hate that he feels badly but … cuddling with my son while watching cartoons in bed isn’t exactly the worst way to spend an afternoon.  Bad momma!  Bad!

I must apologize…

Melissa

I feel as though I’ve given you all the blog equivalent of “Someone I love went to Detroit and all I got was this lousy t-shirt.”  I can do better than that.  I did actually learn stuff.  I did not spend the entire conference at the bar, I swear!

One of the sessions I attended was called “Maximizing the Educational Experience for Children with Fragile X Syndrome by Developing an Appropriate Individualized Education Plan.”  It was presented by Vicki Sudhalter, Ph.D.  She is with the NYS Institute for Basic Research in Developmental Disabilities.

First of all, she is hilarious.  If you ever get a chance to hear one of her presentations, go!  She would be at the top of my list of FX experts to bring into the school should we ever run into a wall that our advocate couldn’t bring down.

Her 3 main topics for discussion were:

  1. Accommodations for Hyperarousal;
  2. Appropriate Assessment Methods; and
  3. Appropriate Goal Creation.

I was mainly focused on part 1, we’ve had very good luck so far with our school district on parts 2 and 3.

Often schools will target behaviors such as hyperactivity, impulsiveness, distractibility, anxiety (covering eyes/ears), aggression, self-injury (hand biting), “autistic” behaviors (flapping, rocking, etc.) to name a few.  Her point was that, for our kids, all of these behaviors stem from hyperarousal.  The school should not be targeting these behaviors and the IEP should not have goals targeted to these behaviors.  The school should be dealing with the underlying issue of hyperarousal through accommodations.

What types of accommodations?  Classroom design and management are both prime areas to target to help deal with a child’s hyperarousal.  The following are some of her suggestions:

Classroom Design:

  1. Lighting –
    • Natural lighting is best unless it is too direct or too bright.  You should pay attention to the lighting throughout the day to be sure the child isn’t being blinded by afternoon sun. 
    • Incandescent lighting is the next best alternative.
    • If neither is possible there are covers that can be put over fluorescent lights to diffuse it. (Sample here.)
    • Minimize or eliminate shiny surfaces that reflect light.
  2. Acoustics –
    • Sound dampening to reduce echos.
    • Dampening of fire alarms and/or loudspeakers
    • Avoid classrooms near the gym, cafeteria or playground.
  3. Decorations –
    • Avoid busy, colorful or complex wall decorations.
    • Use muted colors.
  4. Workstation Layout –
    • Provide visual and acoustical barriers to increase focus.
    • Allow for side by side seating during direct instruction.
  5. Provide a cozy corner/safe place.

Classroom Management:

  1. Follow a routine, provide visuals.
  2. Don’t force/train eye contact.  Don’t mistake looking away with not  paying attention.  Consider sunglasses as an option for the child to allow them to have the correct orientation (face on) but still not force eye contact.
  3. Have a sensory diet.  The sensory activities need to be accessible to the child throughout the day. 
  4. Consider a sensory choice board. 
  5. Don’t use food as oral stimulation.

Then, very quickly, a couple notes on assessing a child with FX.  Rather than standardized tests try for teacher observations.  If your child is doing or saying things at home that he/she won’t do at school or won’t do well at school and you can’t convince the school of that…videotape it.  Give the team a copy of the videotape(s) prior to the meeting.

SEE?  I really did more than relieve the hotel of their riesling!