How to use this strength?

After a brief flirtation with Chuggington, Monkey is, once again, obsessed with the Penguins of Madagascar.   This makes me very happy because those pen-gu-ins1 are hysterical.  Duhdee and I quote them.  A lot.

Monkey also quotes them.  A lot.  Right now his favorite episode is “Hard Boiled Eggy.”  We hear a lot of “Mort!” and “My eyes!”  Personally, I can’t wait for him to break out the “I want to fight some Ninjas in a chain saw factory!” 

We’ve all heard about turning the child’s interests into a strength, that we should find ways to incorporate their interests into educational opportunities.  Here’s the problem…I’m not that smaht.  OK, I am that smart, I’m just not that CREATIVE. 

I’d love to hear ways people have used this sort of thing to create learning opportunities.  Right now I’m just grateful for all the vocabulary he’s learning but it would be nice to find ways to use it for other things too.  Exactly “what” those other things are is my problem and so I throw it at the feet of my internet peeps and hope ya’ll are more creative than I. 

Not that thatis such a great feat, lol.

  1. in my best Dr. Blowhole voice []

It was a big day here!

First, Duhdee totally broke my heart when he said no to this…

I don’t understand how anyone could say no to an 8 month old Australian Shepherd mix.  Sure they are flipping INSANE but they’re insane in that “OMG, let’s do it again” kind of way.  There are very few dog breeds that I’m willing to add to the family that I think could keep up with our little Monkey and an 8 month old, cracked out Aussie just might be the perfect solution.  But *sigh”

To salve my wounded heart we decided to go to the fish store to add the new angelfish I had been wanting for a while.  We’d had 3 at one point but one had a fin deformity and passed on after a few months to no one’s surprise (she had a Nemo fin, come to think of it.  Poor thing.)  Then the large male just died.  He was fine when we went to bed and when we woke up he was dead.  He was the big guy in a tank of Tetras.  The water quality was fine.  We were very sad.  That left one lonely girl in the tank and she has ruled the roost uncontested since but they do well in groups and the tank seemed so empty.

So, we went to the fish store and bought 4 more!  They’re very pretty, I wish I’d mastered the art of photographing fish tanks but, alas, all you’d see is the reflection of my flash and the flash is not nearly as beautiful.  They look basically like this, 2 are mostly silver and the other 2 are more black.

Monkey HATES the fish store and there are probably a thousand reasons but the ones that I suspect rank highest on the list are:

  1. It’s hot and humid;
  2. It smells funny;
  3. It’s always crowded;
  4. It’s tiny;
  5. The lighting is weird; and
  6. There are 90 billion tanks of fish that he wants to pet and all he hears is “Monkey, don’t touch!” and “Hands OUT!”1

After the fish had been bagged, Monkey immediately started asking to carry it and the teenage boy who’d helped us even managed to put one bag in his hands before I realized what was happening.  I startled him a bit when I snatched it out of Monkey’s hands and said, “I don’t think that’s a very good idea.”  Which, I think, should qualify me for an award of some sort…the understatement of the year, perhaps?

All through the check-out process and the 30 minute ride home Monkey asked to hold the fish repeatedly and we stuck to our guns and said no every time.  He was not a happy camper.  Of course, after we got home he jumped on YouTube and immediately pulled up this video:

See how smart we are?  After the fish were in the tank he grabbed one of the empty bags and acted out part of the scene…the bit that starts at 1:45.

Yeah…really glad I grabbed that bag from him…

  1. Also, “Uh, yes, that is a FROG!”  He pronounces it F*ck, loudly…repeatedly. []

This entry is brought to you by one adorable Monkey.

I am laying in my bed with my laptop on my lap.  My son is laying next to me using my shoulder as a pillow.  He is sleepy as sleepy can be but he’s still awake.  So much for T.enex helping him sleep.  He wants me to type, he loves watching the letters crawl across the screen.  I really and truly have nothing to say except that I hate how much he’s been struggling lately and if my typing nonsense and throwing it out there on the internet makes him feel even a little bit better then you all get to read WORTHLESS (thanks for the caps lock, bud) drivel.  Sorry.

So.  Earlier today Monkey made a really awesome discovery!  He can reach the M&Ms we keep on the top of the refrigerator if he grabs his stool.  Yay!  Now he’s constantly running around the house with hands covered in candy coating (aren’t those supposed to NOT melt in your hands, btw?) and a mouth covered in chocolate.  Which is exceptionally nice when he still sometimes shows his affection for me by WIPING HIS MOUTH ON MY CLOTHES!  I know he’s not the only one, do they ever outgrow this though?  I’m really going to miss that bag of M&Ms on the refrigerator.  Walking by and grabbing two or three is a nice little pick me up.  But I guess it’s time we give them up anyway…they were potty training rewards and we’re a good year past being potty trained now.  I think the lesson has stuck.







nnnnnnnnnnnoonoonllnnnnnnnnkkkkkkknnllllllll    ttttttttttttttttttttttttttttttttttttttttttttttt





Errr..sorry about that, he decided I wasn’t doing it right.

So, where was I?  Oh, we have no where left to put the M&Ms and unless we are willing to spend the next bit of time covered in candy coating and chocolate spittle we have no choice but to give them up.  The child is just way too tall.  *Sigh*

He’s wandered off again.  He’s asking for “covers” but he doesn’t want to go to bed?  WTH?  Anyone got any brilliant ideas?  Besides duct tape…because that’s all I’ve got…

One Day Fragile X Conference in Connecticut

The Fragile X Society of Connecticut is hosting a one day conference again this October!  Marcia Braden, Ph.D. (Colorado Spring, CO) Karen Riley, Ph.D. (University of Denver), Don Bailey, Ph.D. (RTI International, NC), Sharyn Lincoln, M.S., CGC (Children’s Hospital Boston) and Jonathan Picker, MB ChB, Ph.D. (Children’s Hospital Boston) will all be presenting.  See the attached poster for more details and also the attached registration form.

Conference Poster

Conference Registration Form

Duhdee and I will be spending Friday night (October 15th) at the hotel.  If anyone else is there and wants to grab dinner, drinks (or dinner & drinks *ahem*) drop me a message through the “Contact Us” form so we can arrange a meet up.  I’d add coffee on the 16th but early risers we are not 😉  There is a break for lunch though so we could do a lunch bunch!  Do I sound desperate?  I do, don’t I?

A conference call.

Tonight Duhdee and I had a conference call with the developmental pediatrician.  We caught up on what we’ve been seeing from Monkey over the last med-free week, none of which is particularly great.  His sleeping which had been tanking continued to do so with a vengeance.  Not only were the night wakings continuing but we had the new and added issue of not being able to settle down to sleep.

During the day he was…intense.  Busy, busy, busy with an extra helping of busy.  For those of you who’ve met him and marveled at our ability to keep up with him?  We lost the battle this week.  Duhdee has his own issues going on with back pain and sciatica but even still…Monkey has been an unstoppable force.  He was a whirling dervish of motion.  A Massachusetts Jumping Bean.  An Umma-wearer-outer, squared.  It’s no wonder I’ve had near constant headaches since last week, we get no sleep and we are constantly in motion.

The only not-awful part of the week of no meds was the deep pressure Monkey has been craving.  That has resulted in a lot of hugs, including some of the full body hugs that Monkey specializes in1.  Of course, with me enjoying all the extra hugs I was also very aware that I was only getting all these hugs because my little guy was holding on by a thread and all that loving was really his desperate attempt to self-sooth.  So, if I let myself think about it, yeah, that part was awful too.  Disregard.

Earlier this morning I took a picture of Monkey just before he woke up.  He was sleeping with his hands under his bum and his legs crossed tightly2.  When I showed the picture to a co-worker she commented that it looked like he’d put himself in a straight-jacket.  And it kind of did.  Even in his sleep he was still trying to self-soothe.  My poor babe.

After dinner we sat down and paged the pediatrician as instructed.  He’d had Duhdee give Monkey a single dose of the A.dderall to see if it helped alleviate any of the symptoms and it did to some extent but he was still rather intense.  After a lot of discussion we’ve decided to go with T.enex. The Dr. is still trying to decide if we’re seeing symptoms of ADHD because of anxiety or if we’re seeing anxiety because of the ADHD meds.  Treating the anxiety could take weeks for the medication to kick in and show a changes, we should see some immediate changes with T.enex though so, ultimately, that’s why we’ve gone this route.

You know, this really just sucks.  Fine, he needs medication to be the very best Monkey he can be but it just plain sucks that we’re “hoping” most of the time when we have to make these calls.

We kept Monkey up until the pharmacy could fill the prescription and started him on it tonight.   Here goes another ride on the medication roller-coaster!  Wheeeee!

  1. He latches on to me so tightly with his arms and legs that I don’t need to hold on to him, he’s like a little…uh…Monkey. []
  2. It’s on Facebook. []

A morning interlude.

This morning, as he was getting dressed, Duhdee grabbed a belt.  Monkey loves belts though he won’t wear one himself.   As Duhdee threaded the belt through the loops, Monkey grabbed the buckle and said, “Pull!”  And he did.

Duhdee, understandably, exclaimed, “Heyyy!”1

Monkey looked up at him, grinned and replied, “Oh, dear!” à la Winnie the Pooh.

I suspect he was not being sincere…especially since he did it again not a minute later.

  1. Monkey loves it when we exclaim “Heyyyy!”  It is his raison d’etre and he will do anything he can think of to get that reaction.  Then, of course, he laughs hysterically. []

A few thoughts from our clinic visits.

I feel as though we’re in a pretty good place.  We may not know exactly how to address the issues we see but I think we’re getting close.  As we all know, how to treat an issue varies greatly from individual to individual.   I think we have come quite a long way this year in figuring out what doesn’t work, which has value.  We’re narrowing down the multitude of options and based on what we’ve been seeing from Monkey, we are making progress.

Thursday was our OT/PT evaluation and our meeting with the developmental pediatrician who is supervising Monkey’s medication.  We sat down with the OT and the PT and chatted for a while about our impressions of Monkey, what concerns us, what the school does and what we do at home.  Using our tips on deep pressure (and some assistance from Eggy) they were able to get Monkey to complete the Peabody evaluation.

We’ll get a much more detailed report in the next week or two but we did sit down briefly to discuss their “impressions.”  They were very pleased with his progress.  He was cutting and using markers in ways he was not able to do last year.  He was problem-solving.  The OT demonstrated a lace-up activity, Monkey replicated the activity but not on the first attempt.  When he looked at what he’d done he knew, without being told, that it wasn’t right.  He took it apart and fixed it.  Very, very impressive.

They were able to see the huge benefits that Monkey gets from deep pressure.  The PT held Monkey on her lap and squeezed Monkey tightly while the OT demonstrated activities1.  His ability to attend to the activity was greatly improved.  It took them a little trial and error to start but once they made the connection it worked amazingly well.  The PT would loosen her grip on him so he could complete the tasks.

Suggestions that came from the visit:

  1. Under Armor (wear under his clothes to school)
  2. Sensory interventions should be accessible to Monkey (they suggested a bag hanging over the back of his assigned chair where they could keep his wrist weights or chewy tubes within easy reach)
  3. One staff member should be identified for Monkey for requesting sensory interventions.

The second part of Thursday’s evaluation was more of a medication review than a true evaluation.  First, the Dr. was very impressed with Monkey’s IEP.  He loved the social goals but is concerned that 1. there is no specified person to supervise/target his social skills, it’s all just “throughout the day” and 2. that there is no board certified behavioral analyst anywhere on his team.  He is going to suggest that Monkey may need a one-on-one aide to target social skills but I think Duhdee and I are leaning towards keeping the staffing the same but pursuing some outside social skills therapy.  This is the exact class type we wanted, I’m not ready to throw up our hands before school starts!

We also decided to make some changes to Monkey’s medications/supplements which was not unexpected.  He has been taking A.dderall plus we’ve been supplementing with l-acetyl carnitine and folic acid.  Both the folic acid and the l-acetyl carnitine were geared towards the ADHD and attention.  We never really saw any major improvements with the l-acetyl carnitine.  It’s been about a year and we still ended up having to pursue a prescription for the ADHD so that is done.  We did, however, see improvements after a few months on the folic acid…way back when.  We’re going to keep that for now but we will revisit it down the road.

The A.dderall is a different situation.  We did see gains when we started on the R.italin and those gains have been maintained on the A.dderall *but* Monkey’s sleep is a problem once again.  He is frequently waking in the middle of the night and unable to fall back asleep.  This makes life very troublesome for him.  While we were talking to the Dr. he asked if this is how Monkey is on the A.dderall…it would have been massively impressive if we could have said yes because he was sitting very quietly in his chair.  I, unfortunately, had to point out that Monkey was very nearly falling asleep sitting up.  He was doing those 10 second blinks and rubbing his eyes trying desperately to stay awake.

I broached the subjects of anxiety and the mega-melatonin dose he’s on and the Dr. decided that we should stop the A.dderall.  Huh.  He wants to figure out if it’s the A.dderall that is causing the sleep issue or not.  I wasn’t 100% sure about this plan but he has way more experience than I do, lol, so we’ll go with it.  He also wants to keep the melatonin in place for now but maybe do a drug holiday after a couple of weeks without the A.dderall potentially interfering. OK.

Then on Friday, we met with Dr. Picker and Sharyn Lincoln (if you’ve met them you’ll know why this is always our favorite part of the clinic!).  They were both at the conference and we’d sat in on a couple sessions that overlapped.  It was nice to be able to refer to the sessions as we discussed Monkey and what direction to go from here.  The short version is that, at the team meeting, Dr. Picker was going to suggest we switch to T.enex to simultaneously treat the ADHD and the sleep issues.  We should hear the team decision within the next week and we’ll implement the new plan.  Yay!  The whole time we were talking (probably an hour) Monkey played with his “Cars” matchbox cars.  He stood by Dr. Picker and even used him as leverage to climb onto the exam table so he could play with all the interesting medical equipment on the wall.

So, to sum up.  He’s making gains in every area but he’s falling further behind in play/social behaviors.  His attentional issues are a concern.  His poor sleep is a concern.   We have identified a medication that should help with both.  And, of course, Monkey rocks…but we didn’t need a clinic visit to learn that!

  1. Face-to-face, not side-by-side, which impresses me even more considering these were both complete strangers to Monkey and he’d been crying when we left him there to do the evaluations alone. []

The baby question, again.

Since Duhdee brought up the topic on Facebook…

A little over 2 years ago Duhdee and I made The Decision.  We weren’t terribly happy with the outcome, we still wanted more kids, but it was a decision and there was some relief in having made it.  We were ready to move on and see where else we might end up now that we’d decided that road was not for us.

So, I’m a little annoyed, quite frankly, to be standing at that crossroads again.  I thought we had moved on and, despite some twinges of regret, I like black and white.  I like decisions.  I don’t like possibilities.  I don’t like uncertainty.  I especially don’t like uncertainty when no amount of Google searching will help me make up my mind!

The facts, such as they are:  I’m having night sweats, I know the biological clock is running down for me way too early.  I really, really want another baby but wanting another baby doesn’t seem like a good enough reason for having another baby.  Another baby means splitting resources, resources that we don’t have an endless supply of but, really, who does?  Every reason I come up with for having another either makes me think that Monkey isn’t good enough or that the new baby would be for him.  And it that’s NOT it.  He is enough.  I would be lucky to have him and only him.  My heart will not break if there is never another child.

The other issue is trickier.  Is it wrong to have another so he has a sibling to learn from and to play with?  Is it wrong to have another so he won’t be alone when we’re gone?  It feels wrong, it feels calculated.  It feels like that other child would be a means to an end. After having met some amazing FX siblings in Detroit we really want that for Monkey.  We want someone who looks up to him and looks after him, someone he can look after since he’s such an amazing caretaker of all the little kids at school.

Is deciding to have a child always a selfish act?  I wish I knew how other people decided to have kids.  If not for FX it seems like this would all be so much simpler…