Chez Perky

More Than Meets The Eye

J has been doing pretty well on the Clonidine patch/Daytrana patch combination for the past couple months.  It's not perfect, and the mornings and evenings are pretty atrocious, but at least he can function during the day at school or camp and we know he's safe.  But the problem with it was that even without the Daytrana, J's anxiety levels are really debilitating, and the Daytrana is especially bad about heightening his natural propensity for anxiety of any kind.  For example, he has such a severe phobia of bugs that he got to a point that he literally could not walk out of the house at times, could not go to sleep in his room by himself, and could not be left alone in his room, for fear of being over taken by bugs, real or imagined.  (this is but one example).

We have, in the past, tried one medication to help control the anxiety - Remeron, which has the advantage of helping with insomnia and also tends to work as an appetite stimulant - which J needs (his appetite is seriously suppressed on the Daytrana, so we work hard to get calories in him, and, in fact, have started even supplementing his calories with calorie boosters).  Unfortunately, the Remeron backfired and the side effects were awful, so it only lasted a couple days before we had to nix that trial.  That was a few months ago.

But we realized we needed to try something new, because we couldn't be moving into summer with a child who was petrified to go outside - particularly with summer camp starting.  And so Ye Olde Developmental Pediatrician recommended starting him on an SSRI, which might have the added benefit of helping him with mood regulation - another much needed area for attention (but secondary to the ADHD and anxiety, so we just hadn't gotten there yet).  I was skeptical that we would be successful with the SSRI solely on the basis of getting him to take it.  After all, we've got kind of a sketchy history of getting J to take medicine for more than a couple weeks at a time.

To my great delight and surprise, despite the fact that the medicine tastes revolting, we have successfully disguised it in about 3 ounces of CocaCola (aka Nectar of the gods) for about three weeks now, without any complaint from J (he knows he's taking medicine - we're not tricking him about that - but he has consistently told us that he doesn't taste it in the coke).  We started at laughably tiny doses and have gone up in teeney tiny increments (and are still below a normal starting dose for children), but it has, so far, been a real miracle for him.  His anxiety level has gone down significantly and he is completely functional now.  The only remaining anxiety he seems to have on a regular basis is social anxiety based around camp/making friends/etc and we're working with him on that. 

Another interesting side effect is that he's been more willing to take oral medication in general - a day or two after starting the SSRI, he started getting some allergy symptoms and was having difficulty sleeping and Seth suggested to him that he could take some Claritin.  We were both laughing inside knowing full-well that J would never take him up on such an offer, but J said, "Okay, I'll take the medicine."  After we picked ourselves up off the floor from our shock, Seth gave J the Claritin (which he took without complaint) and J went back to bed.  Twice, we've even been able to give J a short-acting ADHD medication when we've needed to extend the life of his ADHD medication into the evening hours - something which we never thought would be possible at this point in time.  Ye Olde Develpmental Pediatrician's hope is that once we get some stability on the SSRI dosing (which should be any day now), we can start working on transitioning J to taking a short acting ADHD medicine each morning to help make the mornings much less difficult for all involved.  I'm hoping this isn't too optimistic a goal.

But we do walk a fine line with the SSRI.  The number one side effect with the kids who take it is hyperactivity/overactivation of ADHD symptoms.  Which is funny, since the ADHD medication can overactivate anxiety symptoms.  It's like putting a dehumidifier and a humidfier in the same room and letting them duke it out.  And people wonder why I say it feels, sometimes, like I'm walking a tightrope - always an impossible balancing act.  For the moment, we seem to have found a reasonable balance, but the balance, of course, gets thrown off as he grows, and we have to continually adjust. 

None of this is perfect, or easy, but I must say - it is so nice to see something working for once.  It makes it so much easier to want to get through each day.  Really. 

Interestingly, J is delighted to be taking oral medication again for one reason - because we're back to his reward chart for taking medication.  He gets X's on his chart for taking his medication.  Each X is worth $0.15 and when he fills up his chart, he gets to go purchase something with his money.   Yesterday we helped him out a bit since he's been so great about taking it and we got him a new Transformer (a metal one in hopes that it won't fall apart as quickly as his plastic ones tend to do).  AND as a special treat from us to encourage him to keep up the good work... we got him the Transformers movie, which he's been begging to see. 

He is in little boy heaven.

What he doesn't know is that we have Star Wars waiting in reserve for him, for the next time I need a motivational treat for him.  He's been begging to see that, too.  :)

Imelda Marcos Would Be Proud

Last month, I picked up a pair of knock-off croc-type shoes for each of the triplets.  A pink pair for Ellie, an orange pair for Abby, and a blue pair for Sam.  The kids were delighted, but there was one problem.  Poor little Sam's shoes didn't fit him.  I had guessed his shoe size incorrectly and althought I'd gotten a full size bigger than the girls, it wasn't big enough. 

My kids don't talk, with the exception of a very few  words, but they sure do communicate.  The girls absolutely knew that they had something Sammy didn't have, especially Abby.  Abby would put on her little orange "crocs" and wave her little feet in front of Sam giggling.  Ellie was equally delighted with her own little pink beauties.  But poor Sam was despondent.  He would pick up his blue shoes, and bring them to me, crying wistfully, holding out his bare little naked toes, asking for goodness to be restored in the world.  But, alas, they did not fit.

Fortunately, just two days later, I had to take the triplets in for hearing tests at the hospital, so I had the morning off anyway.  Afterward, the nanny and I went to the store and I ran in to exchange the little shoes for slightly bigger little shoes and I put them on Sam's little feet in the car and he was ecstatic!  He shook his little feet and touched them and showed them off and giggled and laughed all the way from the store to the restaurant where we grabbed lunch before I headed back to work. 

And all was right in the world again. 

It doesn't stop there, though.  Our three little Imeldas are so shoe-obsessed and were so delighted by their new brightly colored shoes that they wouldn't take those little shoes off for several weeks.  They wore them day and night, literally, and if we took them off to do something drastic like change their clothes or give them baths, the temper tantrums were phenomenal.  It was delightful.

But lest you believe that it is just the brightly colored, rather unnatural looking (and feeling) croc-like shoe things that my children are obsessed with, here is evidence that, in fact, it is purely a generalized shoe obsession...  in fact, their preference is for Mom or Dad's shoes - and J's shoes are a close second choice.  They are frequently found stomping (or stumbling) around in our shoes, and the first thing that they do when we walk in the door at the end of the day is race over and start pulling at our shoes desperately trying to get them off our feet. (Interestingly, they are also nearly always offended to find me in my stocking feet and will race over with my shoes and push them onto my feet!)  Enjoy:

     

It's Just a Matter of Priorities

I love* it when people tell me that making things happen in my life is just a matter of prioritizing and "making the time" to do things.  Take, for example, the fact that I really need to see a dentist.  Really, really need to see a dentist.  I also really need to see my neurologist.  But I really can't find the time to make either one happen. 

"Oh," they** say, "You have to make the time.  You need to reprioritize."

And: "You make time for your kids anytime they need an appointment, you must make the time for yourself."

Or then there's this gem:  "If you don't take care of you, you can't take care of anyone else."

As if anything is as easy as any of that.  Sure, I can make the time.  But the only time left to make is taking time out of sleep - and, um, there's not a lot of that time left, because I've already taken a lot of that time out for other stuff.  And, um, hello?  My dentist isn't open at 3am.    It's super-easy to say "just reprioritize" ... but go and try to do it.

The fact of the matter is, I'm extraordinarily good at setting priorities.  How else would I survive as the fulltime-working-mother of a special-needs ADHD 5 1/2 year old and nearly 2 year old triplets?  How else would I manage to juggle speech therapy for three toddlers, speech/language therapy for the J-man, developmental ped. appointments for J, parenting classes, two board memberships, NICU support groups, managing a household, my job, and the myriad of other things I juggle?

My life consists of nothing but prioritizing and reprioritizing every single minute of every single day.

What I don't love about "You just need to reprioritize" is the implication that I'm the one at fault for not making things happen.  The fact is, there are only so many hours in the day, and there is never going to be a way to add more.  Until I find a way to reduce the expenses in our lives by about $20K - I'm not going to be able to quit working, and until I can quit working, I'm not going to be able to make more time for things.  Certainly not for things that have to be accomplished during business hours.

I just wish that people could understand this; but so few people seem to get it. 

----------------------------------------------
* and by "love" I mean "loathe", "detest", "hate", or "makes me want to bludgeon with a candlestick"
** You know about they (or them), right?  They always know what's right for us, don't they?

How Our Phone Conversations Sound These Days

Seth went to give platelets early this morning. While he was gone, I got J's daily medication taken care of, got the babies out of their cribs, changed them, and made everybody pancakes. All four kids were eating their pancakes when Seth called to say he was on his way home. Our conversation went something like this:

Seth: Good news! I'm on my way home.
Me: Great! Happy Father's Day! I've got pancakes waiting for you - J! Do not drink off the chair! Turn around, sit properly, and drink appropriately! Sorry, honey. So, um, I'll see you soon?
Seth: Yeah, I'm leaving [city] now, so I'll be home shortly. Anything you need me to do on the way home?
Me: No, there are some things we need to pick - Sam! Don't throw your plate on the floor! Ugh. Of course, right after he threw his plate on the floor, he did his little mumbly-giggly thing and proceded to eat the pancake he still had in his hands. Um, right. So there are some things we need to pick up for the nanny for the week, but we can get them later.
Seth: Okay, I'll just come home then.
Me: That would be good. This hasn't been a great morning, what with whiny boy and all. He got mad at me for giving him strawberries with his pancakes. Ellie, SIT DOWN! Sorry honey. How'd things go this morning?
Seth: Fine. It was pretty uneventful actually -
Me: Get the strawberry out of your nose!
Seth: [laughing]
Me: Sam! No pancakes in your hair! I am not washing your hair today!
Seth: [still laughing]
Me: Yes, very funny.
Seth: It is!
Me: I am so blogging this.
Seth: You should!
Me: Yes, Ellie, that's Ellie's nose. Good job, Abby, that's Abby's nose! What's your ETA?
Seth: About 15-20 minutes. I'll be home soon. Did you remember to change J's weekly patch?
Me: No, I didn't have any whole ones upstairs, but I'll do it when I go downstairs again. Abby, do you need a new diaper? Yuck! Hasn't mommy changed enough diapers today?
Seth: Sorry, sweetie.
Me: It's okay. I'll see you soon. Wanna say hi to Abby?

And on and on...

Broken

We had an appointment with Ye Olde Developmental Pediatrician this morning, ostensibly to talk about the status of the J-man's medications.  I kind of left you hanging on that one.  Well, we had a great couple weeks, actually.  We were giving him Focalin in the cream of Oreos, of all things, and that worked GREAT.  For 13 days.  The thing is, he's a "fast metabolizer", and since he refuses to take any extended release medications, that meant he was eating 7 Oreos a day.  Even a kid can get sick of Oreos after a while.  And so, the Oreos were doomed from the start.  I gave it 10-14 days and he lasted 13.  Did I call it, or what?

Two days off of medication and we knew he wasn't safe.  I called YODP that Saturday night and left a message saying it wasn't urgent, but if he could please call me sometime Sunday to discuss options, that'd be great.  His return call couldn't have been made with more perfect timing.  An unmedicated J-man is a sight to be seen, and he proved once again that he simply isn't safe without medication - not to himself, nor to those around him.  He is simply too impulsive.  Just before YODP called back, J had impulsively pushed a chair out from under Ellie who was otherwise calmly eating her breakfast.  We are so lucky she was able to catch her balance and I got to her before anything dreadful could have happened.  And then the phone rang. YODP and I are nearly always on the same page, medication-wise.  I had already given J a Clonidine patch on Saturday in hopes that would be enough to help keep things at bay until we could find other ways of helping him, but clearly that wasn't enough.  So YODP and I agreed that, side-effects be-darned, safety was paramount.  At least as a stop-gap measure, J had to go back on Daytrana (patch). 

Though not ideal in terms of side effects, it has the advantage that J will take it, so at least we know he's safe. And that's where we've been holding for the last few weeks.  It'd be great if we could get other medication into him to help with the beginning and end of the day.  Or if we could get something into him to help with appetite stimulation, or with the anxiety side effects.  But right now?  He's safe.

So we went for an appointment today with YODP, ostensibly for a talk about medications - but we know where we are on the medications.  We'd like to increase the Clonidine, but we won't without getting a baseline EKG, which we've got scheduled for  tomorrow.  We talked about that, but we'd already talked about that last week over the phone, so that was nothing new and didn't take long .  We talked about J's appetite and strategies to get calorie-dense foods into him (the world's pickiest eater) .  And we talked about how to proceed with speech therapy for the summer (probably taking a break). 

For the first time ever, we found ourselves out of things to talk about ... with 20 minutes to spare. And the Good Doctor put his keyboard aside and danced around for minute or two with a few sideways questions, but I knew where he was going.  And finally, he simply came out and asked me directly:  "Do I need to be referring you for therapy and/or medication?  Are you feeling overwhelmed?  Depressed?  Anxious?  All of the above?"

Sure, Doc.  But let's be real - where is the time to deal with any of that going to come from?  I have to work; I have to make face-time at work.   I have four kids.  I have no wiggle room left on my work schedule because the kids have therapy on both ends of my work schedule.  My husband has a totally unpredictable work schedule which means that I never knew which days I have flexibility in the morning and which days I have flexibility in the afternoon, and I just... can't miss any more work.  (Evidence?  I'm sitting here hacking out a lung today, but can I go to the doctor?  NO.) 

"A good deal of my job is to make sure that parents get through these very difficult early years without breaking."

Broken. That's what I feel like.  I feel broken.  I feel like I'm in a million tiny pieces and I can't find them all even if I thought I *could* put them back together.

And I feel sort of wimpy and dumb.  Because there's nothing really wrong with my life.  I have four beautiful children, the best husband in the universe, a job (I mean, I hate working, but at least I have a job in this troubled economy, right?), a house.  The things that go wrong are things that I have a perfectly legitimate reason to be stressed out about.  So what on earth am I whining about?  HONESTLY?

But he's right.  I'm not coping.  I'm miserable.  I'm constantly scraping the bottom of the barrel on my reserves.  I have nothing left.  I'm crying all the time, usually for no good reason.  I don't enjoy things anymore.  I don't want to do anything.  I don't want to eat most of the time.  I don't sleep well when I do sleep, but mostly all I want to do is sleep.  This whole year has sucked.  Royally.  And while I have legitimate reasons to be at the end of my rope, that doesn't change the fact that I've truly lost my ability to recover from the things that happen to me.  That's the difference between the me of today and the me of this time last year is my recovery time. 

All right, doc.  You win.  I left a message for the therapist he referred me to.  I don't promise that we'll actually FIND a mutually agreeable time, but I left a message.    That's something, right?

(Update - the therapist did call back the next day and we scheduled a lunchtime appointment for Tuesday the 23rd.  Now that it's scheduled, I feel like it can't come soon enough, and it's like I can barely hold myself together enough to make it there.  Probably doesn't help that I'm really sick and it's nearly "that time of the month" but still...  Anyway, YODP's whole idea had been that maybe she would have a lunchtime appointment available for me, but I had been skeptical.  Turns out he's just as smart as he looks - maybe Michigan State isn't so bad after all.)

"The Duct Tape is in the Linen Closet"

My husband is (jokingly, I hope) writing a parenting series entitled "The Merciless Discipline Guide to Parenting."  Book One is to be entitled "Duct Tape:  The Only Parenting Tool You'll Ever Need"...  well, I don't know that it's the only tool that we'll ever need with four little monsters ruling our roost, but we're certainly finding more uses for duct tape every day, that's for sure.

Ellie, for example, has taken to removing her pajamas after we've put her to bed.  And hey, once you've removed your pajamas, well, you may as well remove your diaper, right?  Ah, sweet freedom!  Who wouldn't want such luxurious freedom?  Most nights, we would find her like the picture below, diaper discarded with wild abandon:

If you look closely enough in this picture, you can see that Ellie not only took off her pajama bottoms and diaper, but she also peed all over her crib sheet and accoutrements.  Poor baby; we had to wake her up and change her crib and her clothes and take her beloved bear away from her to be washed.  She was sleepy, though, so she cooperated really well.

This happened a couple times before we broke out the duct tape to tape her diapers on during bed time. 

Unfortunately, it didn't *quite* occur to us that naptime and bedtime are roughly equivalent in a toddler's mind.  And yesterday I went into the nursery to rescue the kids from naptime.  I walked in and Abby giggled and handed me a diaper.  Huh?  A diaper?  Where did this come from?  *Gasp*  The girls were wearing little sundresses yesterday - easy access to their diapers.  Drat.  Clearly, Abby had learned to take her diaper off also!  Ah well.  

I pulled Abby out of her crib and went to put a new diaper on her when I realized...  she hadn't just pulled her diaper off... she'd pooped in her bed!  Gah!  This was something Ellie hadn't managed yet.  Le Sigh.  I got a new diaper onto Abby and moved on to the next baby.  Ellie grinned up at me and dropped a sopping wet diaper over the side of her crib.  Thud.  Thanks, Ellie.  At least *she* contained all of her bodily functions to the diaper.  Sam, bless him, was still fully clothed and diapered when I got to his crib.  Whew.

When I called Seth (he was working) to tell him what I'd discovered at the end of naptime, he chuckled as he said:

The Duct Tape is in the Linen Closet! 

Just a Spoonful of Sugar...

 

Just a spoonful of sugar helps the medicine go down
In a most delightful way

Growing up, Mary Poppins was one of my favorite movies to watch, over and over again.  I loved the magic Mary Poppins could spin, the order she created from chaos, the cheer she instilled in the gloomiest of gloomies.  Chief among my favorite songs in the film was "A Spoonful of Sugar."

In ev'ry job that must be done
There is an element of fun
You find the fun and snap!
The job's a game

I loved the idea that something so simple, a spoonful of sugar, could make something so yucky (medicine), suddenly palatable.  I loved the way that everything fell into place within the course of that song.  Why, she was right!  If we could just find the fun in each chore, life would be so much more enjoyable, wouldn't it?  Toys would pick themselves up, or at least, it would feel that way.  Dishes would wash themselves, or at least we wouldn't mind washing them. 

And ev'ry task you undertake
Becomes a piece of cake

But today?  Today, I feel like the song is mocking me.  Why?  Because of the chorus.  Because, "It's very clear to see that..."

A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

Of course!  Why didn't I think of that!?  If only I'd been giving J his medicine with a spoonful of sugar for the past 11 months, he would take it with a smile!  What was I thinking?  Riiiight.  Well, the spoonful of sugar may work wonders for polio vaccine, but it sure doesn't work wonders for the myriad of ADHD medications we've tried for our Tasmanian Devil.

Obviously, there's a small hint of sarcasm in my voice right now.  I haven't been writing about it so much, because it seems so darned redundant to do so, but we've really been struggling with working out a medication routine for J that will work.  Or that, you know, will work for longer than two weeks.  Because two weeks of working just doesn't count, in my book. 

So in the last 11 months, we have tried:  Adderall XR, Focalin XR, Focalin, Daytrana, Methylin liquid, and Tenex.  

Bear in mind that prior to starting ADHD medication, we had never, ever been able to get J to so much as take cough syrup or an antibiotic under any circumstances.  "Not to worry," Dr. S. assurred us, "I've never had a patient that I haven't been able to get to take medication.  I have lots of tricks up my sleeve."

J had side effects from the Adderall XR, so that was quickly dismissed and we moved on to the next option.  "Don't worry," soothed Dr. S., "about half of the time we don't have success with the first medicine with a child like J, but we usually have success within two tries."  He also hated taking it. 

So we switched to Daytrana, which is an ADHD medication that is delivered via a transdermal patch.  We had some difficulty getting the dose of the medication correct - it's limited in the dosing - 10, 15, or 20 mg patches, and he really needed 12.5 mg, so we had to cut the patches to give him the optimal dose.  The patches also really irritated his skin and the medication overall didn't work so well for him.  Eventually, due to the side effects, and the fact that it wasn't working so well for him anyway, we decided to try another oral medication:  Focalin XR.

He wouldn't take the Focalin XR after a few weeks because of the texture (it was a capsule with little beads inside - we broke the capsule open and mixed the beads into yogurt, ice cream, pudding, applesauce, whatever....nothing worked... once he'd decided he didn't like it, he was done).  While taking the Focalin XR, we added some regular release Focalin to give a little extra help during th latter part of the day on Mondays and Tuesdays, just so he could focus at Speech Therapy.  This worked for a bit, until he stopped taking the Focalin XR all together and we moved on to just the regular release Focalin 3-4 times per day.

He took the regular release Focalin for a little while, but it had two problems.  The first was that it was blue.  This wouldn't seem like a big problem, but he's ... well, he's unique.  And if you mixed a crushed up blue pill into, say, vanilla yogurt, well, it turned the creamy white yogurt blue.  And then he wouldn't eat the yogurt.  But he didn't like it in anything else.  Soon he started complaining that he didn't like the taste.  I had to admit, it was a little bit bitter tasting compared to several other medicines.    We tried yogurt, pudding, ice cream, whipped cream.  I tried mixing it into simple syrup before mixing it into anything else to try cutting the bitterness, on the theory that a spoonful of sugar might help the medicine go down.  Nothing helped.  Finally, he flat out refused to take it.

While he was taking the Focalin, which (by the way) was doing a SUPER JOB, we added in Tenex to help with the beginning and end of the day troughs.  The Tenex has no taste, and we crushed it up, mixed it into 1ml of simple syrup and served that up with a spoonful of whipped cream. This worked fine for a while.  Until it didn't.  Then we started putting it in mango sorbet, which worked for a long time.  Until it didn't.  Then vanilla ice cream.  Which worked.  Until it didn't.  Then for a few short lived days, Lemon Sorbet (specific brand, mind you).  But that didn't work more than a day or two.  Then back to vanilla ice cream.  Which works.  Except now?  It doesn't.

With all of the difficulty getting J to take medication, we devised an elaborate reward system to encourage compliance.  From the start, J received a "special treat" immediately upon taking his medication.  This could be a treat of his choosing - M&Ms, Hershey's Kisses, a little bit of soda, Marshmallows, Fruit by the Foot, Twizzlers, Candy Rings, Gummy Bears, Oreos, Jelly Beans, whatever worked.  He got to choose what he wanted for his special treat - because that gave him an element of control over the whole affair. 

In ev'ry job that must be done
There is an element of fun
You find the fun and snap!
The job's a game

In addition to the immediate reward, we worked out a system of long-term rewards as well.  First, I took a picture of a Transformer he wanted and I cut it up into puzzle pieces.  Each time he took his medication without a fuss, he got to glue a piece of the puzzle onto the colored paper backing I'd made for him.  When the puzzle was finished, we went and purchased that transformer.  We did this exercise several times.  Each puzzle took about a week to finish, if he took his medicine every time he was supposed to.  Shortly thereafter, he told us that he wanted to have money of his own to buy things.  An allowance.  While my heart skipped a beat at the thought of my baby growing up enough to be ready for an allowance, we worked out a system wherein he could earn his own money.  We created a grid with 64 boxes on it.  He would earn X's (which we would mark in the boxes) for taking his medicine.  4 X's for taking his medicine without argument, 2 X's if he argued about it, 1 X if he wouldn't take it for me, but took it at school with his teacher instead, and 0 X's if he failed to take it at all.  Each X was valued at $0.15 and the total chart was worth $9.60 - roughly the cost of a small Bionicle or a medium sized Transformer.  If he received the maximum number of X's he could for every dose of medicine he was scheduled to take, it would take him approximately one week to finish the chart.  (He nearly never finished in a week).  While I chafed at the idea of giving a 5 year old a $10/week allowance, the truth was, we were giving him that indirectly with the toy rewards anyway, plus he was rarely earning the full $9.60 per week regardless.  Plus, let's be real:  the quality of his life and the quality of our lives is drastically better when he takes his medicine.  So whatever works, right?

This system worked for a while.  Until it didn't.  (we still do it and it has various degrees of success depending on how much J feels like being motivated on a particular day - but he's just not that motivated by rewards.  If he doesn't want to take medicine, no reward is going to be good enough, period).

The honey bee that fetch the nectar
From the flowers to the comb
Never tire of ever buzzing to and fro
Because they take a little nip
From ev'ry flower that they sip
And hence (And hence),
They find (They find)
Their task is not a grind.

When he stopped being willing to take oral medications, and we realized that every single day was a struggle (and worse: when he stopped taking it even for his teacher), we put a moratorium on all oral medication and put him back on Daytrana.  But this time we also used a cream to relieve the itching from the patch, and were very careful to rotate the placement of the patch (as we had been last time.  The Daytrana simply doesn't work as well for J as the other medications, and we soon found new side effects creeping up - moodiness, anxiety, phobias.  All of which were unacceptable.  We also found, quickly that he still needed the Tenex in the morning and evening, so we quickly got that back on board, which he was blessedly willing to take.  But the side effects from the Daytrana were just too frustrating, and lowering his dose didn't help and reduced the effectiveness of the drug, so we moved on to...

Methylin liquid.  We had had this sitting in our cupboard for quite some time, but I had always thought there was no way J would ever try this.  But I was desperate and the taste wasn't so offensive.  It couldn't hurt, right?  I put some in a an ounce or two of orange juice and asked him to drink it and he loved it.  And... it worked!  It wasn't quite the miracle drug that the Focalin had been, but it was a reasonable substitute.  The Methylin and Tenex combination was a good fit.  You know, for the 10 days that he was willing to take it.  And then he stopped.

Back to the Daytrana.  For all its faults, the Daytrana has the distinct advantage that J is willing to take it.  He doesn't (usually) argue about it.  There's no compliance issue.  There's minimal struggle.  There's little stress.  And though it's not optimal medication coverage, it works to a point.  And this time?  It really did seem to be working...  the moodiness seemed only intermittent and the drug effect seemed fairly consistent.  We were pretty happy.  Until we started noticing that he was paralyzed with anxiety about bugs and other creepy crawlies.  He saw them everywhere, even when they weren't there.  The last straw was when we were at a park and he was literally paralyzed with fear of the bees.  Even when there weren't any around.  We tried adding on a medication to help the anxiety, but it completely backfired with side effects that were far worse than the original problem, and we had to pull him off of it immediately.

***

I will pause here to answer the inevitable question:  with all this struggling, didn't I ever consider simply not medicating my child?  Side effects, frustrations with compliance, changing medicines and routines all the time... is it worth it? 

Let me tell you about J without medicine.  Without medicine, J cannot concentrate in school.  He cannot function in his speech therapy sessions.  He is so physically unaware of his space that he is not safe around his siblings.  He throws fits of epic proportions because he can't keep his emotions in check.  He can't organize his space or his mind.  Last Saturday he wouldn't take his medication, so he was unmedicated when we sat down to lunch.  I placed a plate of strawberries in front of him for the first course because he doesn't like the fish that everyone else was having as a first course.  He was near tears because he was so energized and disorganized in his head that he literally could not figure out how to decide which strawberry to eat first.  He needed an adult to intervene and help him organize his thoughts enough to understand which strawberry to choose.  Without his medicine J cannot have a successful playdate.  He cannot choose a book to read.  He cannot find a toy to play with.  He cannot hold a conversation.

Not medicating J is simply not an option.

***

So Daytrana?  Not an option anymore.   So we tried, again, to do the Methylin/Tenex combination.  It worked relatively well for about 10 days, but in that period, we realized that J is a "fast metabolizer" of Methylin and needs it every 2 hours.  This proved too much for his delicate constitution.  While he happily took it every three hours, in Root Beer only, giving it to him every 2 hours put him over the edge.  Switching him back to every 3 hours was a disaster, the rollercoaster up and down as he came on and off the medication were terrible, and he quickly moved to the point of refusing to take the medication all together. 

Now we're on to a short trial of getting him back on Focalin, which will fail.  And after that we'll be experimenting with a new medicine, which I don't expect to work either.  Hey, I'm not a pessimist, but look, after all that, would you have high hopes either?  Even the doctor doesn't have high hopes.  I called him Monday and reminded him that last year he promised me that he'd never had a child he couldn't get to take medication before.

"And he's my first."

 

 

A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

Family Ties

One thing I can tell you about our families is that we're very consistent - we're all certifiable.  And those of us who claim not to be?  We're either in denial, or we just haven't fallen off the cliff yet.   

One of the reasons I always craved a large family was because my own family was very small, and very dysfunctional.  My mother is an only child, her mother was an only child, her father had one brother. 

My father has one brother, with whom he does not speak.  His father had two brothers, one who died in the Second World War, and the other with whom he was surprisingly close.  My father does not speak with his mother.  His mother has a brother who is not usually on speaking terms with her and a sister with whom she as not spoken in over half a century.

I'm 33 years old.  For nearly half of my life, my brother has not spoken to me.  For about two thirds of my life my brother has either not spoken to me at all, or he has not spoken civilly to me.  Indeed, most people who have only met me in the last ten years don't even realize I have a brother - because functionally?  I don't.  

In fact, if you ask him?  I don't exist.  Literally.  He will tell you he has no siblings.  No sister.  Nada.  I never existed, as far as he is concerned.  It is as if my 33 years on this earth were entirely inconsequential.

I suppose, if I am entirely honest with myself, in the grand scheme of the universe, my time on this early probably is inconsequential.  But people (myself included) do like to delude themselves into believing that there is some meaning in their lives and that at least the people in their families will find their lives worthwhile. 

Frankly, my husband's family isn't much more functional.  One example:

My MIL has a sister who did not speak to her for several decades.  I doubt either of them really knew why E wasn't speaking to my MIL after all those years, but she harboured so much bitterness that she cut my MIL off entirely - to the point that she even cut her children off from my MIL's children and allowed no contact between the cousins.  Until, suddenly, a couple weeks before our wedding, I received a phone call from an elderly relative of my husband's saying that as he was getting on in years, it was his deepest desire to repair the broken branches of the splintered family tree.  And he was planning to use our wedding as the vehicle to provide that repair service.  He wanted us to invite E to the wedding.  I refused, believing it to be wholly inappropriate, and frankly unfair to my MIL.  It simply was not the time nor the place for such a gesture.  He said he understood and we thought that was the last of it.  Until three days before the wedding, he left a voice mail stating, "I'm bringing E.  I expect you to behave maturely and appropriately about this matter.  Please seat her with us at the reception."  I might have thought it was worth it, had E made any overtures toward peace-making at the wedding.  Instead, she told my MIL flat out that she didn't want anything to do with her and wanted her to stay away from her. 

Good heavens, do I have a point?  Why yes, yes I do.

In February, E wrote to me and asked me if I could get her in touch with my MIL.  She was beginning to feel her mortality looming and thought perhaps it was time to put the past in the past, despite decades of not speaking to my MIL.  My MIL is a better person than me, you know, and she agreed to get back in touch with her sister and they've been exchanging email ever since. 

I realized that by the time I am 65(ish) (my MIL's age), my brother will have not spoken to me in nearly half a century.    Would I be as good a person as my MIL, I wondered?  It's a terrible exercise to take myself through.  I used to wonder all the time what I would do if my brother suddenly changed his mind and walked back into my life.  But the fact is, he didn't just stop speaking to me.  He erased me from his life.  He erased me from the planet - from existence.  I don't exist in his universe. I never existed.

It made me wonder how he deals with the web of lies he must weave.

He was married once - for a year and a half.  I met her, so she surely knew I existed.  But he was pissed as hell at her for talking to me, I know that much.

But I wonder, you know?  If he meets a girl and she's asking about his life and his family and whatever and he says, "I don't have any siblings" that works fine for a first date or whatever.  And it never comes up again, right?  But what if she starts asking more questions on subsequent dates... like what life as an only child is like, or "did you ever wish you had a sibling?" or something like that? 

And what happens if he and this woman were to become more serious and whatever and ... you know ... he thought about maybe marrying her or something.  Suppose, he took her to meet his father.  His father who also happens to be my father.  I can only assume my father does not feed my brother's pathology by taking down any pictures of his four grandchildren throughout the house just because my brother visits (though it would certainly be MY preference for him to do so - I have no desire for my brother to have any glimpse at my life any more).  But suppose this woman sees all these pictures of all these kids and asks who all these kids are?  "Why, those are my grandchildren!"  "Grandchildren?  But your only child has no children!" "Those aren't my son's children, they are my daughter's!"

Can you imagine? 

Surely he can't let things get that far while still being in that lie, can he?  Because, I can tell you most definitely, if my husband had lied to me about something that fundamental and I found out about it before we got married?  I would have called the wedding off.  How could I ever trust him again? 

So how do you wipe someone out of existence?  Really?

I don't know.  What I do know is that I decided several years ago was that the only way that I could cope with my brother's treatment of me was to get him out of my life, too.  He had been so disgusting to me and my family at a family reunion several years back that I told my father that I didn't want to hear anything more about his life again.  And I told him that I didn't want him telling my brother anything more about my life either.  Nothing.  If my brother didn't want to know about my life, then dammit, I certainly didn't want information flowing toward him.  I have since done my best to insulate myself from as much information about him as I can, and yet?  It finds me. 

It shouldn't be hard to cut myself off from information about him - he doesn't speak to my mother.  He doesn't speak to my grandfather or my grandmother.  I rarely hear from the few relatives that he's in touch with other than my father who has respected my wishes and never shared another detail about my brother's life with me since that day I requested it.

And yet.

Well, it turns out my brother had a daughter sometime last year.

And he's getting married next month.

It shouldn't hurt me to hear this (I heard it from my grandmother, don't ask how she heard it, it's too complicated).  And I really wish I didn't know it.  I spent a couple hours shedding bukets of tears over something that shouldn't matter to me.  It shouldn't matter to me, really, but it just emphasizes the fact that my brother would never tell me these things. 

It emphasizes his rejection.

I don't know why it should bother me so much after all these years that my brother doesn't talk to me.  That my brother is such an asshole.  That my brother has never treated me like a human being.  But my dear friend, B, put it very succinctly and really got to the heart of the matter, I think.  And it's true:

No one likes to be rejected.

Smoochalicious!

All of my kids love to get smooches these days, and they are so fun to love.  They are huggable and snuggable and kissable and lovable.  They are perfect little angels (um, most of the time). 

Julian gives lots of hugs and kisses and will even just randomly say "Eema?  I love you so much!"  He is so loving and kind.  He never hesitates to stop and give big bear hugs to the people he loves, and he hasn't yet gotten to an age where giving mommy a kiss is icky (though he won't share a plate with me, because he might get my "cuties" if he does!) 

Abby loves to be held and will giggle if you give her kisses.  Occasionally, she'll turn her cheek toward you if she realizes you're trying to give her a kiss.  She gets extremely excited when either Seth or I walk into a room, and she'll come bounding over to be picked right up.  Alternatively, she'll lift up her shirt to expose her little belly to be tickled and then she'll giggle wildly when you do tickle her.  If you don't oblige her in the tickle-fest, she gets quite upset.  She's the most prone to sudden bouts of anger and a temper tantrum, but also easily consoled, because you can swiftly pick her up, give her some kisses and she's off and giggling again. 

Sam is my mama's boy, and a real snuggle-bunny.  If he sees me walk into the room, nothing can stop him.  He will be on a mission to get across the room to get to Mommy!  He'll come running over, arms wide, ready to be scooped up into the air.  His belly-laugh makes my heart skip a beat, and his smile could light up a whole city.  He takes longer to warm up to other people than the girls do, and he is more likely to run to me if there are other people around than he is likely to run to them, but he does eventually warm up to people without too much of a problem.  He's a sweet thing.  When I ask him for kisses, he puts his forehead toward me to get a kiss - proof that he does understand some things!

Yeah, I know I already had a picture of Ellie, but I'll be honest, I couldn't pick one.  This picture is the "after" picture, so to speak.  This is what happens to her hair after a nap, if it's been up in a ponytail like in the previous picture!  Ellie has really caught on to the whole smoochapalooza idea.  Yesterday, I gave Ellie a kiss and she made a "mwah" sound while I was kissing her.  I thought it was a fluke, but I was delighted!  I said, "Will you give me a kiss, Ellie?" and she leaned over, puckered her little lips and gave me a kiss, complete with "mwah" sound.  And then she giggled, and so did I!  For half an hour, we played the smooches game and she giggled as we showed off her new trick to Abba when he came home.  And this new skill was not a fluke - she still does it today!  Hooray!

There's a whole lotta lovin' goin' on in Chez Perky!

 

Conjunction Junction

Well, we may not be up to conjunctions and grammar yet, but I would be remiss as a mother if I didn't mention the huge strides that my kids have been making in the speech/language development department.  Especially the girls, as has been the trend, of course. 

On March 2nd, Ellie was in the hospital (as many of you may recall) and I was talking to a nurse or doctor and Ellie (who had been refusing food most of the time she was in the hospital) was standing in her crib reaching out toward the bedside table where there was a sleeve of Ritz Crackers (one of her favorite snacks) saying "Cacka! Cacka!"  She said it in such a soft, sweet little voice that it took a couple minutes for me to realize what was going on.

"Oh my goodness!  You want a Cracker!  You can have all the crackers you want, little girl!" 

And she did gobble down those crackers, like a ravenous little fiend.   She knew what she wanted, and she clearly communicated it.  And thus, a first word was born. 

Well, that's not really fair.  I'd posted before that she had said "mama" before.  And it's true, she had.  But just as quickly as she started saying Mama, she stopped (a few days later).  And she hasn't said it since.  It took Ellie a long time to say anything other than cracker, in fact.

But Ellie does now have a nice little array of words - "Cracker", "Cup", "Up", "Abba" (meaning "father" in Hebrew - though I'm not sure she really knows what that one means, she does seem to use that one rather randomly), "Ball", and um, that might be it.  I'm sure Seth will let me know if I'm missing any.

In April, Abby started to follow suit.  The difference between Abby and Ellie, though, is that Ellie speaks extemporaneously - if there's something she wants she says the word (assuming she knows the word).  But she never imitates sounds just for the sake of imitating sounds.  She's not a mynah bird the way a lot of children are when they first start talking.  Abby's first clear words, however, were obviously imitation, though, as you'll see...

Each day, when I walk in the door, the triplets are usually playing in the sunroom with SuperNanny.  When I walk in, I am generally accosted by three loving babies who are eager for a hug, a kiss, or (most importantly) my cell phone or car keys.  I always exclaim "Hi Babies!"  One day in April, Abby whispered (with a devilish little grin on her face), "Hi Babies" after I greeted them. 

Wait, what?  Did she just say what I think she just said?

"Hi Babies!" I said again.
"Hi Babies!" she whispered with a grin.

Whoa.  Seriously?  That's your first word(s)?  Neat!

So Abby imitates, but for a long time would not say anything extemporaneously.

Ellie started doing this thing where every time she had a ball she would throw it up in the air while saying "Up!" (something her speech therapist taught her) and Abby started imitating that.  But now Abby will casually say "Up" whenever she sees a ball.  Once Abby said Piglet (but that was, again, imitating us calling Piglet by his name). 

The girls are definitely improving on receptive language skills as well.  They will point to their noses (or mine) if I ask where their nose is.  Abby will point out Piglet's nose as well.  They will follow very, very simple instructions ("bring that to mommy!").  And Abby (and to a certain extent Ellie as well) is very receptive to the emotional needs of her siblings - if they are upset, she will bring them their loveys. 

Sam?  Well, Sam's not talking.  But he lets us know what he needs.  He's taken to SHRIEKING (make that SCREAMING) in the middle of the night if he wakes up and discovers that his pacifier is missing.  This is a new and definitely undesirable behaviour, as far as I'm concerned.  Gah.  If he wants to be picked up, he'll stand there with his arms raised grunting.  No question what he wants.  But if you want him to follow a simple instruction, you must use far more visual cues with him than the girls need.  The girls still need more visual cues than other kids their age, but Sam needs visual cues for virtually all instructions.  Still, he has definitely made progress - it used to be that he couldn't follow an instruction even with a visual cue.  And he is now responding to his name (he turns his head) and will stop what he's doing if you say, "No, Sam!" in a stern voice.  Whether it's the words or the inflection he is understanding, I'm not sure, but either way, it is progress.

We are still getting their hearing checked on May 20th, because they are still behind on receptive and expressive language, and while no one believes there's anything wrong with their hearing, it's a good rule-it-out step and it is non-invasive.  So we'll have all kinds of fun with that.  Umm.  Yeah.  Something like that.

Some day, I'm sure I'm going to wonder why I ever wanted them to talk.  :) 

I do remember that at their 18 month appointment, the pediatrician remarked that it was probably a testament to their underlying personalities that they aren't having far more temper tantrums and fits, because with the language delays that they're having and the fact that they are otherwise developmentally on target, this can be very frustrating for them to not be able to communicate their needs.  While they DO throw fits, they aren't constant and they are very predictable and generally happen not as a result of communication failures, but as a sign that bedtime/naptime is looming.

Yep, I just have really, really good kids.  I'm one lucky mom.