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.  :)

Time In: The Zen of Parenting

We're taking a class entitled "Parenting the Challenging Child," that is being taught by our developmental pediatrician.  It's interesting, actually, because many of the techniques and philosophies being presented in the class are things that he has already presented to us in our appointments with him, but now we are seeing them presented in a much more methodical manner, rather than in the more bandaid-approach we've been getting. 

One of the key philosophies of the course is that techniques like "time-out" and ignoring undesireable behaviors only work effectively if it is time-out from positive attention.  So before adding the negative, reactive strategies to our parenting toolkit, so to speak, we are building our strategies for positive, proactive strategies.  Last week, we talked about the importance of "Time In." 

Time in is much what it sounds like - in many ways it's the opposite of a time out.  It is time spent with your child, but it's more than that.  It's not just ANY time spent with your child.  There are rules, you see.  Time in isn't an opportunity to teach.  It's not a time to discipline.  It's not a time to be a parent, per se.  It's a time to let your child BE a child, and for you to spend time with your child BEING that child.  You don't answer the phone, you don't do dishes or make dinner in the kitchen while you're half-paying attention to what your child is doing in the other room.  You don't ask any questions, you don't give any instructions.  Unless your child tries to do something truly dangerous like lighting the cat on fire, you don't issue any reprimands.  This time (15-30 minutes a day, ideally) is completely child-led play time.  You should try to see the world through your child's eyes for this brief period of time.  Instead of asking questions about what your child is doing, you should comment on, or narrate, what your child is doing, give lots of positive praise, and play along, or take directions from your child, but really let your child lead the way.  Your child should be the one to decide what happens during this time, you shouldn't be the one dictating any of the activities or the nature of the play.  Like I said, hard as it may be, this is not a time for teaching moments, or for interrogations (no questions!!  This is the hardest part!), or for reprimands.  Make sure that you've got a child-safe and child-friendly environment where your child is free to act like a child free from admonishments to not touch that, or not go there, or not do that, or whatnot. 

Get the idea?

This wasn't my first introduction to the concept of Time In.  Several books discuss the concept; most recently when I read Russell Barkely's "Taking Charge of ADHD" I was reminded that we should be practicing the art of Time In.  Dr. S. had emphasized the importance of Time In during our office visits.  But I'm not good at Time In.  I'm okay with generally spending time with my kids.  But this specific kind of Time In technique?  Not my strong suit.  Seth?  Seth is great at it.  He's a natural at this kind of Zen Parenting where you can just let your kid be a kid and let all the parenting instincts and teaching moments and reprimands go.  Seth gets in the moment and crawls around on the floor and builds legos and wrestles and lets J lead the way.  Me?  If you take away my questions, my teaching moments, my ability to lead in any way... I get tense.  There's no Zen of Parenting in Time In for me.  So the whole Time In thing has naturally fallen to Seth, not really on purpose, but because it's his strength and my weakness.  We're a team and we play to our strengths, right?

But that's cheating, according to Dr. S, and we have to learn to share responsibility and share the fun.  So last week, after our class on Time In, our homework was to practice our Time In technique.  Mommy isn't used to not doing well on her homework, so I was determined to make this work!  Thus began my first foray into the world of Time In. 

J was playing with Transformers and I started to play with him.  He didn't like what I was doing, so he switched Transformers with me.  I hate Transformers, passionately, so I was sort of at a loss for what to do or say.  "Golly what a nifty Transformer, and gee, how deliciously violent this game is" somehow seemed terribly inadequate.  I was tense and fairly miserable.  "Grr!" I said.  "My guy is attacking your guy!"  "No he's not," J said, "My guy has a shield and he blocked your guy! Take that! Kablam! Kablam!"  I stifled the urge to remind J that we don't like him making shooting sounds.  "Um, well, then my guy has shields too and um, your weapons can't penetrate them!"  "No, your guy doesn't have shields, and now I shot him," J countered.  This wasn't going well. 

"Gosh, J, this is a really neat Transformer!  Can you show me how to make him back into the sports car??"  Whoops!  The Time In Purist would be tapping the table to remind me that I'd just broken the cardinal rule of Time In... not only had I asked a question, but I'd redirected the play.  Fortunately, it didn't backfire this time.  "Oh yeah, look at this, Eema!  It is SO cool!  You do it like this, and you move that around, and then you..."

 I gradually became more comfortable playing with him, and we chased each other around the living room.  I became a giant transformer-eating monster, waving my arms about and stomping my feet in Frankenstein-like movements toward him. 

And then it happened.  I finally experienced the true moment of Zen Parenting:

J jumped up onto the couch, bounced over onto the chair, jumped to the automan, bounced back over to the couch and climbed onto the back of the couch and declared himself the winner (winner of what?  I'm not really sure).  J knows that my absolute most non-negotiable rule in the living room is that he may not climb up on the furniture and bounce around on it as if it is a playground.  He knows it is a sure-fire way to test what kind of mood I'm in.  But just as I was about to remind him to get off the couch, I remembered that would be against the rules.  Not only did I not have to reprimand him right then and there, I wasn't allowed to.  He wasn't in immediate danger, the cat wasn't about to be set on fire, it was time to just let this one go. 

In that moment I felt like all my tension just went out of my body and I was free.  Finally I could just let J be J.  I could just be with him and see the world from his perspective - perched upon the back of the couch, and you know what?  It looked really nifty from up there.  I understood what drove him to be up there, for just a moment.  For that moment I didn't have to be the mean old mom who has all these rules.  I got to be the cool mom who overlooked that relatively minor infraction in the grand scheme of things.  And then?  The giant transformer-eating monster scooped in, picked him up off the back of the couch, tickled him, and wrestled him down to the floor, giggling madly, with nary a reprimand to be heard.  Mission accomplished.  No arguments.  No fighting.  No pushbacks.  And without missing even a second of quality time with my son.

Since then, I've made it a point to spend time differently with J, even when it isn't specifically Time In time.  I try to be more animated while I'm talking with him, I let him lead the discussions more, I respond to the things that he's saying and I try not to just say, "uh huh" when he's talking about something I couldn't care less about (like transformers).  Even if I'm feeding the babies and he's standing there talking to me, I can still make him feel like he's got a few minutes, or even seconds, of my absolute, undivided attention.  And it's making all the difference in the world.

The Punchline

I forgot to include the punchline in last night's post.

My head spinning with visions of CPT codes, diagnosis codes, claim forms, and murder plots, I told Seth he would have to take these claims to EAP which is a whole different process including a whole different set of information.  I would do it myself, except that the EAP office is an hour away from MY office and only feet from his office.

Yesterday, my beloved husband went over to the EAP office for me, armed with copies of all our invoices and claim forms.  He had a lovely conversation with the EAP representative, who was extremely helpful but could not process the claims for him.  Why? 

Oh, see, according to the lovely woman at EAP, the CPT code on these invoices is a - wait for it - medical procedure code.  Since it's not a mental health procedure code, it doesn't need preapproval from EAP, so there's nothing to be done on the EAP side.  This is, apparently, something the medical side gets wrong.  Often.

She called over to the medical claims department and explained that she was sending back these claims and that they needed to be processed and approved.  Needless to say, I'm not holding my breath.

What "They" Don't Tell You About Raising A Special Needs Child: The Insurance Edition

There's a lot "they" don't tell you about life.  Especially life with children.  And when you throw in triplets and an ADHD five year old?  Well, there's a whole lot that "they" edit out for fear of you running screaming from the room.  Today's topic?  Insurance companies. Today's blog subtitle?  Don't let the bastards get you down. 

Item the first?  I am *still* getting bills and EOBs for the triplets NICU hospitalization.  Note:  They were discharged from the NICU 1 year, 14 days ago.  I am still getting bills from the company that we rented Ellie's heart monitor for.  I'm getting these bills because the insurance company won't pay for them.  The insurance company won't pay for them because the bills are in Abby's name.  Abby never had a heart monitor.

But that's not what this post is about.  That's just an illustration of how stupid the insurance companies can be. 

Today's post is about ADHD and insurance companies.  You see, when you have a child with special needs, you're bound to run into all sorts of fun with insurance companies.  Insurance companies prefer you to have children who never get sick and who have no special needs.  They make money off of members who pay their premiums and never go to the doctor.  But when you have a child who starts going to a developmental pediatrician, a speech pathologist, a neuropsychologist, and heaven knows who else, well, the insurance company doesn't love you QUITE so much anymore.  

Here's the other fun part about ADHD:  ADHD is considered a mental health diagnosis, not a medical diagnosis.  Insurance companies don't really feel the need to cover mental health diagnoses without a lot of hoop jumping.  I guess they think you might abuse the system or something.  Because my favorite thing to do on a Tuesday morning is go see a therapist, or, say, a developmental pediatrician, just for kicks. 

Oh, and did I mention that most developmental pediatricians don't accept insurance?  At least not the ones in this area.  The ones that do are the ones that are affiliated with large hospital systems, but they have long waiting lists and aren't as good with personal followup.  My doctor is phenomenal about personally following up with everything and I get a call back within hours every time I call him for ANYTHING no matter how trivial.  He coordinates personally with every member of the J-man's team.  I wouldn't get that from any of the major medical centers - plus if I went to them, I'd STILL be waiting to get in for the initial intake appointment because their waiting lists are so long.  So no insurance.  We pay out of pocket, submit the claims to our insurance company ourselves and hope that they will reimburse us. 

For medical claims that are out of network, the insurance covers 60% of the allowable fee.  For mental health claims, the claims must be preapproved by the Employee Assistance Program (EAP), and are covered at 40%.  Mental health claims are also limited to 10 visits per year.  Each invoice includes a diagnosis code (J's is DSM IV's 314.01) and a CPT code (this is a procedure code).  The diagnosis code translates to ADHD, combined type.  The CPT code usually translates to "50 minute office consult", but has occasionally been "school assessment" or other things.

After our first several appointments with the developmental pediatrician, we submitted several claims to the insurance company, not knowing whether it would be covered as medical or mental health claims.  Astoundingly, the claims were covered as medical claims, at 60%.  It was easier than we thought!  Hooray!  After several more visits, and about $1500 in bills, I submitted another pile of receipts and waited.  And waited.  And waited.  And waited.  And waited.  No check.  No explanation of benefits (EOB).  Nothing.  Seth called the insurance company (it only seemed fair, since it's HIS insurance) and they said, "Oh, those claims SHOULD have been processed, but we accidentally denied them saying that they should have been submitted to EAP for preapproval.  We'll re-process them and you'll receive a check in 2-3 weeks."  Three weeks passed and we heard nothing.  So I called them this time, and I had the most infuriating conversation I've ever had in my life:

ME:  I'm trying to find out the status of these claims.
THEM: Oh those claims were denied.
ME:  I haven't received any EOBs.  Can you tell me why they've been denied?
THEM:  We denied them because they're mental health claims.  They need to be preapproved by EAP.
ME:  No, my husband spoke to you a few weeks ago and was told that they were mistakenly denied for that reason, but were being resubmitted for approval because they should have been approved.
THEM:  No ma'am. These are mental health claims, so they have to be submitted to EAP for preapproval.
ME:  I don't understand... in June you approved a claim with the same CPT Code.
THEM:  It doesn't matter, ma'am.  We don't use the CPT code, we use the Diagnosis code.  The diagnosis code on this claim is a Mental Health Diagnosis.  So it needs preaproval by EAP. 
ME:  But the diagnosis code last month was also a Mental Health diagnosis. 
THEM:  But last month, the CPT Code reflected a medication check, so it was a medical claim, not a mental health claim.
ME:  I thought the CPT Code was irrelevant?
THEM:  What is relevant is whether it is a medical procedure or a mental health visit.
ME:  Okay, so the CPT code drives whether it is covered or not, then?
THEM:  No, if it is a mental health diagnosis, it has to have preapproval by EAP.
ME:  You're not making any sense.  June's claims had the SAME Diagnosis code AND the SAME CPT code as this month.  The only difference is that in June you approved the claim and this time denied it.  Can you explain why? 
THEM:  Yes, it was denied because it's a mental health claim.
ME: No, it's a medical procedure, per the CPT Code.
THEM: No, it's a mental health claim, per the diagnosis code.
ME:  You're not understanding me.  Three weeks ago, my husband spoke with you and you explained to him that these claims were accidentally denied, but that they shouldn't have been.  They were to be reprocessed for approval because they should have been approved in the first place.  What you don't seem to be understanding is that you literally owe me thousands of dollars at this point, which prevents me from continuing to guarantee that I can afford appropriate medical care for my child when he needs it.  Can you at least understand where my frustration is coming from?
THEM:  Ma'am, the diagnosis code is a mental health diagnosis code, so the claim needs preapproval from EAP.
ME:  Then why did you approve an IDENTICAL claim in June?
THEM:  The procedure code in June was a medical code.
ME:  The procedure code on these claims is a medical code as well.  That's what I've been trying to tell you.
THEM:  Ma'am, as I've already told you, the procedure code has nothing to do with whether the claim is approved or denied; the diagnosis code drives whether it is considered a mental health claim or a medical claim, not the procedure code. 

I swear to you, I almost threw the phone across my office.  If it hadn't been the middle of the work day, I might have been driven to drink.  Except that drinking leads to more migraines, and that's no fun at all.

Studies show that the stress levels in parents of kids with ADHD are as high as parents of kids with autism.  I believe it, but sometimes I wonder if it's because of the ADHD, or if it's because of the insurance companies.  (It's both)

Here We Go Again

I haven't written about all the ups and downs, backs and forths, various changes we've made in the J-man's medications, because, really? What's the point? I'd just be writing the same post again and again. He'll take a new medication for 5, 6, 8, maybe even 10 or 12 days. And then, he'll start refusing to take it. And he'll lose privileges. His beloved Bionicles will go into the attic. His legos will be put away. His rights to use the computer will be taken away. And those threats will work for a day or two. Until they don't work anymore.

But this latest medicaton? Oh my gosh! It's been working so unbelievably well! I didn't realize how incredible life could be until we switched to it! Life was beautiful. But it was an extended release capsule that we had to open up and break into J's food... and, well, THAT didn't go over well. Because the capsule contained these little teeney tiny beads. And the beads... well, J's super-sensitive to food textures. And whenever he decides he doesn't like a food texture, he starts freaking out. So we were putting the beads in yogurt, or ice cream, or pudding, or applesauce. And that worked. For a while. And then we had to start disguising it by putting sprinkles in with the beads. And that really worked. For a while. And that stopped working. And nothing, and I mean NOTHING, was working.

Today he simply wouldn't swallow any bite he put into his mouth. He spat it out. Today was not the day for him to refuse to take his medicine - he had an appointment scheduled with a neuropsychologist to have some testing done. He didn't know about the appointment, so I know his refusal to take the medication today wasn't just acting out to get at me. Plus, he'd told his teacher yesterday that he doesn't like his morning medicine and he's not going to take it anymore. So it's been coming.

I called the developmental pediatrician in desperation at 8am and left him a message. "What do I do? Do I cancel the appointment with the neuropsychologist that I'm paying thousands of dollars to? Or do I put a patch on him and hope that does enough to get him through the appointment? Help!" He called back at 8:30 and told me to put a patch on him. He sounded defeated. I hope he was just tired and rushed. I put a patch on J and tried to get him to calm down. The appointment was at 10am. Plenty of time for the patch to work... Turns out, the new medication works a LOT better than the patch. In comparison, the patch made it seem like he was nearly unmedicated. Sigh.

Sometimes these unmedicated (or in this case, undermedicated) days are a good thing. They give me a sanity check and remind me that the medication (the one he was SUPPOSED to take, but didn't) DOES work. It reminds me that I AM right to be medicating my child, despite how unpopular a choice it is. When I see how out of control my child is, how incapable he is of controlling even his most destructive impulses... it reminds me how desperately he needs the aid of this medication. When I see how crazed and wild he becomes without medication, I am reminded that his behavior was NOT all in my head, that I was NOT making it all up or exaggerating. I was not crazy, or just completely incapable of handling it. It was not normal behavior that I was simply intolerant of. Sometimes the unmedicated days are vindicating.

Today, however, is not one of those good days to be unmedicated. Today, J needed to be focused. Today, J needed to be optimally medicated. Today, J was not. Nevertheless, the neuropsychologist did the best that she could do, and said she'd do the rest at the next appointment in a couple of weeks. She's very flexible and she'll work within whatever limitations she can. And I got to read a good deal of a terrific book: ADHD & Me: What I Learned From Lighting Fires at the Dinner Table. Maybe I'll finish it at the next appointment.

I took the J-man to school and had a long talk with his teacher on the playground. His teacher has the advantage of having an ADHD son of her own, so she can give me a lot of her own perspective on this stuff. And we decided that if the developmental pediatrician is okay with it, we can try moving him to the short acting version of the medication. He already takes the short acting version of the medication on Mondays and Tuesdays at school in the afternoons so that he's focused for speech therapy. He doesn't mind the short acting medication because it's not little beads, it's a pill crushed into powder, so the texture doesn't bother him (...yet). The disadvantage to the short acting version is that it wears off in as little as 3 hours (versus 8 hours), so it has to be given pretty frequently, which means having the teacher give it to him at least twice a day, but she doesn't mind. And so prompted my SECOND phone call to the pediatrician for the day, making my fifth phone call to him in two days. I wish I could have frequent flyer miles with him or something. Sheesh.

And so... That's what we're doing. Switching to the short acting medication, which he'll be taking at 7:30, 11:30, and 2:30 (he'll get the 2:30 dose only on Mondays and Tuesdays... the other days I'll give him a dose when he gets home ONLY if I feel he needs it - otherwise his appetite gets suppressed too much. SIGH.). And really? If anyone thinks this is all too much for a little kid? They should take him for a day. UNmedicated. Because it may be too much for a little kid, but it's DEFINITELY too much for his mommy.

Did I mention I have a full time job in addition to being a full time mommy? Did I mention I'll be working on that full time job into the wee hours of tonight to make up for the time lost this morning trying to take care of him? Did I mention that I DESPISE that people try to suggest that mothers either work full time or they parent full time? I DO BOTH. I am home for all of my triplets' therapy appointments. I take J to ALL of his therapy appointments. I coordinate with all of the teachers, doctors, therapists, psychologists, and caregivers that function as part of J-man's team. I feed them, I shop for them, I love them, I hold them, I parent them. I do all of the things that a full time parent does. And I still have to fit a full time job in between all of that. For that matter, my wondermous husband also is a full time parent and works full time, so don't go thinking he's a slacker either, because he's not. So there.

Incompetence

Some days I feel absolutely ill-equipped to be a parent of an ADHD child. 

I would elaborate, but really?  Is there anything more to say than that?  I don't know that I was cut out to do this, but then again, I wouldn't trust anyone else to do it better.

New School

We're changing the J-man's school this fall, did I tell you that?  I lose track, you know.  It's a weird situation, because in our county (and even the private schools follow the county rules), to start kindergarten, you must turn 5 by September 1st.  J turns 5 September 16th; therefore, he does not qualify for kindergarten this year.  This is probably for the best, considering that he is behind in pre-reading skills, has the AD/HD thing going for him, and frankly, he's a boy.  He could use the extra year before being pushed ahead.  So we expected he would spend an extra year in four-year-old preschool this year and that was great. That's what most kids in his predicament do.  We love his current school and we love the teacher he would have next year, and it was all good things. 

And then we started seeing this developmental pediatrician.  He's been a miracle worker so far, you know, and hasn't led us astray yet, so we certainly can't complain.  And one of the things that he recommended was that we consider moving the J-man this coming fall into a "transitional kindergarten" program nearby.  The particular program that he was recommending is very good with working with children with special needs and especially children with J's profile.  They are actually better in terms of my commute (slightly).  They have an amazing facility, a fantastic teacher, and have been working with our developmental pediatrician for ten years, so they already have a system established to handle the J-man's special needs.  It's perfect, right?

It's still not easy, you know?  It was a very difficult decision to make.  Just as we'd decided to make the change, we found out who J's teacher would be at his old school next year and that made it a heart-wrenching choice to make, because she would be AMAZING with J - and a known commodity.  Changing schools also means it will be the fourth school in four years.  On the other hand, changing schools has never bothered J before, so why should it now?  Change really bothers ME, but it's never seemed to bother HIM. 

After weeks of deliberation, we finally decided that we have this developmental pediatrician on our team for a reason:  he is an expert.  He is here to guide us, to inform us, to teach us, and to help us.  He has not led us astray yet.  He has given us incredible referrals so far.  He is accessible.  He is sensitive to our needs.  He has never marginalized our emotions or our experiences.  But he has also been there himself, as a parent and as a professional.  So the best thing we can do is trust in him.  Not blindly, of course, but trust is important.

And so, we are changing schools.  And when I told his old school we weren't coming back - well, they didn't take the news well, let's just put it that way.    I know we're making the right decision, at least I hope we are, but I'm still broken up about it.  But J?  The J-man is NOT.  "When am I starting at my new school?  Do I get to go there today?" he asks me every morning.  He is so excited, he can hardly wait.   

My little tiny boy?  That baby boy that came to us at just 13 months old?  Golly - he's starting KINDERGARTEN next week.   *sniff*  Can you believe it?

Medication Changes

We saw the developmental pediatrician today.  We were going to spend about 10-15 minutes talking about medication and the rest talking about behaviour managment issues.  That was the plan.  But we've been trying to sort out the dose on the patch, and not been having QUITE as much success as we'd like, so we ended up spending the entire 50 minute session working out medication ideas.

Essentially, the patch is working really well.  But not exactly the way we'd like.  At the lowest dose the patch comes in, his hyperactivity/impulsivity was still not controlled quite enough.  At the next dose (50% higher), his hyperactivity/impulsivity was totally under control, but he became melancholy, lethargic, disinterested, and sad.  So we moved him to 1 1/4 patches of the lower dose, which is a pain in the neck, but doable.  Unfortunately, we still saw the mood side-effects, though to a lesser degree,  which is just not okay.  It's very difficult, this balancing act.  It breaks my heart.  I don't want to lose my vivacious little boy who is so full of life and love and energy and hope and beauty. 

Switching to another stimulant isn't really the answer, because we've been there, done that, and getting him to TAKE it is impossible, plus it would be just like using the patch - they're all closely related.  We know the patch is working, using more of another stimulant isn't going to change what the patch is doing at this point. 

So we're going to augment with another medication entirely and work with that.  We'll give it a few days and see how it's going and adjust the dose as necessary.  Dr. S. is going to Ocean City this weekend and into next week.  I feel like my lifeline is going away, even though he told me not to hesitate to call if I needed anything.  I don't want to call him on vacation.  He reminded me that he knew when he decided that he would not sign over his practice except if he leaves the country, that this means that he gets interrupted on vacation for five minutes several times a day, and he's okay with that.  Still, I don't like it one bit.  That being said, we'll probably NEED to be in touch, since we're moving into starting a new medication and will need to be monitoring J pretty closely. 

We're starting at a teeny, tiny, ridiculously small dose.  0.2 ml of the medication (there are 1mg/ml).  I'm hoping we can get J to even take it.  Really, really hoping.

I feel this tremendous responsibility to J through all of this.  I feel like we are manipulating him, in a sense.  I suppose in a way, we are, though we are doing so to help him be able to function in a positive way.  We want him to be able to learn optimally in a classroom, function socially like a normal preschooler/kindergartner, behave appropriate as a  typical  child in society.   We want him to feel like he is in control of his little world, and like he has a positive effect on the world around him.  We don't want him receiving only negative feedback from  teachers and friends.  We don't want him to be ostracized for his inability to control his impulses.  Still, this manipulation is a tremendous responsibility.  It's difficult to know that we're always making the right judgments.  I wholeheartedly believe that we are doing the right thing by choosing to medicate him, as we are also choosing a behavior management approach in tandem with the medication trial.  I just sometimes wonder if I'm adequately assessing the effects of the drug.  What if I had a bad day and I'm looking at his behaviors through tinted glasses one day?  What if I'm being unfair or biased?  What if I'm not the RIGHT person for this job?

People see me with my triplets and they say, "You must be so tired" or "It must be so hard to parent triplets."  But they never consider that the triplets are the easy part.  They practically parent themselves right now.  But every time I turn around, I feel like I'm doing the wrong thing with J.  What if I accidentally yell at him and scar him for life?  He's so sensitive.  What if I don't give him enough positive feedback today?  What if I don't choose the right routine for him?  What if I can't find the right scenario to help him control his impulses to avoid the temper tantrum or conflict in the store?  What if I make the wrong parenting choices today?  What if I give the wrong input to the doctor and we choose the wrong medication based on faulty input from me?  What if this has long term consequences that we didn't know about?

These are the things they don't tell you about in the parenting manual.  These are the things I'm kind of glad I didn't know about ahead of time.  If I had, I might have chickened out and missed out on all the fun stuff. 

Moments in Motherhood

We're having a bit of a rocky time getting J's medication dosage set.  It's a fine line between hyperactivity and listlessness.  Frustrating, you know?  We don't want to lose the beautiful, full-of-life boy that we love so much, but we do want him to be able to control his world a little better than he had been before.   A fine line, you know.  Still, he's so yummy...  after all, who can pass up the opportunity to love this little boy!

He had a speech/language assessment this morning and apparently did very well with the therapist.  I don't know the results yet, but I'll keep you posted.  For all we're paying for it, it better be one thorough report, that's for sure.  He had a complete meltdown in the car as we were leaving and I felt terribly for him.  I wish I could do more to help him.  I fear that part of it is the medicine making him a little melancholy.  We might have to make another switch.  No one warned me about this part of motherhood.  The choices we make for our children.  The balancing act between helping them find control over their bodies, but keeping the happiness within.  I know we'll find the right answer.  I know we'll find the balance.  Right now it feels so out of reach, but I know in time it will feel within reach again.

Sunday I took two of the babies down to VA to meet up with Jessica and Pam and one of Pam's yummy triplets, Oliver.  Or was it Miles?  Or Linus?  Just kidding.  It was definitely Oliver.  Or Linus.  Or, um...  No, seriously. It was Oliver.  He was even wearing  a shirt that said "Oliver" on it.  A good time was had by all.  I brought Abby and Sam with me.  Jessica was sans children, which left her able to hold babies and feed them and love them and all sorts of good stuff.  We got lots of attention from other patrons at Starbuck's which is a bit ridiculous, don't you think?  Three women, three babies.  Doesn't that seem totally normal?  We told a few people that between the three of us, we actually have 11 12 children and that turned a few heads.  Imagine if we'd brought all 11 12 children with us!  Sheesh!

Not to leave my other darling child out of the picture.  After I came home from meeting up with Pam and Jessica, Seth and I went out to the container store for the aforementioned trip to the Container Store (rock on!).  And then we came home to feed the babies dinner.  When I cleaned up the babies with a washcloth, I couldn't help but use the damp washcloth to give her the trademark mohawk!  So fun!  She's such a happy baby, and here she is.  Finally, we scoff at "failure to thrive" diagnoses!  She's healthy and beautiful and just... perfect.  We worked hard for this and I'm loving every second of it.

Does motherhood get anymore perfect than this?   Really?  I don't think it does.  I waited so long for moments like these, and I'm so grateful for every one of them.  Thank heaven for digital photography, so I can capture so many of these moments.  I wish I were better about capturing more of them.  I've missed so many of them already.

In other moments in motherhood, ones that I'd rather not live through... my nanny asked for a raise today.  She asked for a good enough reason... that is, her rent is going up exponentially, and she simply needs more money in order to be able to afford it, plus she's taken in her 5 year old niece just this week and will be taking care of her indefinitely (possibly forever) just as she's found out about needing to change apartments to the higher rent (her landlord has decided to sell her current place, so she's stuck moving - no choice).  Unfortunately, we honestly can't even afford her salary now.  We've paid her out of money that has come from random sources, like our tax refund, Seth's father's (small) estate,  etc.  But we don't know how we'll pay her once we're through with that (soon).  If we were to pay her any more than we are currently paying her, it would make more sense for me to just quit my job and stay home with the kids, but we can't afford for me to do that either.  We pay her more than any of the other neighborhood nannies are making (admittedly, none of the other neighborhood nannies are watching triplet infants).  Sigh.  I hate that money ever comes between people.  She did call me later and tell me not to worry about it and that she'd work something out and figure it out, that she loves these babies and that she doesn't want me to think that she's going anywhere, because she's not.  That reassures me, but I feel badly.  I wish I could give her the world, because I love her, but I can't. 

No one tells you about this part of motherhood, either.  The part where you become this attached to their caregiver, because you know that you're trusting this person with the most important things in the world - your children, and you know you want the best for them.

Success? Or, Too Good to Be True?

The skeptic in me says it's too good to be true.  Last night, before stories and bed, I reminded the J-man about today's new morning routine.  A few of you asked me what the new morning routine is, so here it is, in a nutshell:

1. Get Up
2. Put on "sticker" (patch - his medicine is now contained in a patch delivery system rather than a pill/capsule)
3. No Milk Before Breakfast (this is a change and we expected this to be the first fight today, because he customarily had a cup of milk waiting for him in the fridge first thing in the morning)
4. Pick Out Clothes
5. Get Dressed
6. Use the Bathroom (he's the one who insisted that this had to be in this order, even though it flies in the face of logic to have this after getting dressed and not before)
7. Eat Breakfast / Have Milk (breakfast time is nearly always a fight in our house)
8. Brush Teeth (I expected a fight here, too, since brushing teeth is always a fight in our house)
9. Choice: TV / Read Books / Play Time
10. Get Shoes On (Getting shoes on is nearly always a fight in our house, so we always leave it for last)
11. Go by 8AM (this can vary, but our average is 8AM)

Astoundingly, none of the fights that we anticipated materialized. J didn't actually eat his breakfast, and was dismayed later when I wouldn't let him have it, but there were no tantrums, no arguments, no tears, and nothing but smooth transitions. Go figure. Somehow I get the feeling not every day will be this easy.  But for today?  I'll take it.

Of course, one of the reasons today worked so well is I wasn't planning on going in to the office, so I didn't need to get myself ready, but it was still good to know that it CAN be done.