Where to begin? (med change & other issues)

After the most recent issues, we requested an ARD meeting at the school.  The meeting was attended by me, Rick, school principal, diagnostician, psychologist, speech therapist, Colin’s general education teacher and special ed teacher.

When we first arrived, the principal sat at the head of the table, Rick and I sat on one side.  Mrs. E (sped teacher) came in and sat right next me.  That made me happy – she’s so helpful and supportive.  She cares so much about Colin.

During the meeting, we learned a lot.  Colin’s been exhibiting other strange behaviors we were unaware of before.  Seems everyone’s noticed a changes in him over the past month and half. He’s been regressing.  His OCD tendencies have been getting in he way of his school work.  He’s momentarily not recognizing people or places.  He’s seeing people who aren’t there. (When he ran from school recently, he was looking for Pop – my stepdad – in the woods. Another time, he was adamant he saw Rick out in front of the school and needed to go talk to him.)

It was suggested that we take him to a neurologist.  We agreed.

The school maintained that his services wouldn’t change with an autism diagnosis.  The school psychologist also suggested that Colin may actually be suffering from FAS (fetal alcohol syndrome), which can mimic Autism.  He seems to feel that too many rush to label children as autistic (he blames that for the increase in diagnosed cases) because it’s the “in” thing to do.

Here’s the thing, though.  I’m not Colin’s birth mom.  I do not take any diagnosis personally because he was never in my womb.   Rick and I had nothing to do with him until the worst damage had been done. (I say that because I’m sure we’ll mess up our kids in our own way, but it would never be through negligence or anything done intentionally!!)  So, if it is FAS, great, let’s find out and move on from there.  I’ve been reading up and I don’t believe FAS fits.  Sure, he exhibits the behavioral aspects of FAS, but none of the physical characteristics. And all of those behavioral aspects are similar to Autism, so I’m not sure how FAS can be assumed or thought to be more likely than Autism. For all we know, it could be neither – his psychiatrist pointed out that he could just have MR (mental retardation).

How are we to know without testing?

And the school still does not want to test.  They went through the list of 13 items that are to be considered on the IEP of an autistic child and either gave us the info for how to reach certain groups or explained how he could qualify for certain services without a diagnosis, etc.  The school psychologist also said he meets with another boy every other week for 30 minutes to provide behavioral/social therapy. He’s decided to add Colin to the meetings because he feels it would help both boys. (The other child is also in 2nd grade.)

On Thursday, we met with Dr. L (psychiatrist) to discuss the changes everyone has seen in Colin lately.  We brought along a letter from his special ed teacher as well.  I think that really helped some of our concerns sink in for him – a third-party was also noticing issues.

Dr. L started by acting shocked that no one else had mentioned we should see a neurologist before. (Um, HE never said that, either!)  He suggested we speak to our pediatrician and ask her for a recommendation.  He also said we need to submit a formal request to the school asking that they evaluate Colin – no matter his diagnosis, if we don’t know what we’re dealing with, we may be missing something.

He also wanted to change Colin’s meds.  From everything we’d told him and from what he’d read, it just sounded as if Colin’s anxiety level was off the charts.  When the doctor asked if kids at school were mean to him, Colin said no.  He said, “Are they bothering you?”  Colin said yes.  “How are they bothering you?”

“They make noise,” he answered.  That’s been another factor affecting his academics – he’s been acutely aware of any noises in the room and hallway lately.  The diagnostician said she could hardly complete the yearly tests she gives him – in a quiet room – because every time someone walked down the hall or the A/C kicked on, he would stop and ask what the sound was, why it was happening, etc.

We’re back on Adderall.  We told Dr. L that the biggest issue we had with Adderll before was that it helped his attention/focus, but did nothing for his hyperactivity.  Dr. L has had Colin on a very low dose of Clonidine in the AM lately, and said that should help with his hyperactivity.

As of yesterday, he’s taking:

• .05mg Clonidine, 25mg Seroquel and 15mg Adderall XR in the AM
• .05mg Clonidine at midday
• .1mg Clonidine and 50mg Seroquel at night

Yesterday was a pretty good day.  He was relatively calm and collected most of the day.  He even sat down to work on building things with Legos again (something he hasn’t done in quite a while). He slept through the night, but woke up at 5am.

Unfortunately, he also seems miserable.  Ever since our bout with Resperidone back in March, I’ve been more aware of his moods, not just his behavior. (The Resperidone made him absolutely miserable. I hadn’t realized HOW miserable until we took him off of it and saw goofy/happy Colin again.)

He’s not laughing like he usually does.  In fact, yesterday, I only saw him smile a few times.  (Until around 7pm when his meds were wearing off, of course.)

It’s a fine line.  I want him to do well at school and have the tools/meds he needs to succeed, but ultimately…I want him to be happy as much as anything.  Today is day 2 of the Adderall/Clonidine combination and he’s been emotional and moody. (And, as I watch him playing the Wii and lining the stools up just so, I worry that his OCD tendencies will always be an issue.) He’s playing his favorite video game right now (pinball) and looks focused but joyless.

We’ll see how the next few days go.  I agree with the doctor that we need to move away from the Ritalin.  I don’t think it’s helping him any more and the amount he was on was higher than an 8-year-old boy should be taking (80mg of extended release in the AM and 20mg of  quick release in the PM).

This coming week, I’ll get my written letter to the school diagnostician requesting that they evaluate Colin.  If they still refuse, we have a colleague of our play therapist that does academic psychological evaluations and can hopefully help us.  I’m also going to find a neurologist and get an appointment as soon as possible.

All this with the holidays around the corner!  At least we have most of our shopping done and – between the two of us – we’ll be home while the kids are out of school (Rick has off the week of Christmas, I’m off the week of New Year’s).

As I said to Rick when we were both feeling lost and frustrated last week: WE WILL FIGURE THIS OUT.

It’s all about perspective

Yesterday was a scorcher.  By 7am, it was already 85 degrees outside.  (We got up to 106!!)

When I left my cool, 75-degree house yesterday morning, I walked outside and went, “UGH! It’s so HOT out here!!”

Then…sometime between yesterday afternoon and last night, our A/C stopped working.  Lordy.  I woke up in a sweat during the night. Thermostat said it was set at 76 and yet it was 85 in the house.  Not good.  At that point, it was only about 80 degrees outside!

After a sweaty, muggy morning (I opened up the windows, but we don’t have any windows in the living room), Rick arrived home from work and I walked out the door to head to work.

It was about 84 degrees outside when I left this morning.  I went, “Oh my gosh, that feels so good!”  There was a slight breeze and the air felt COOL compared to the couple of degrees warmer it was in the house (and the fact that we had very little air circulation).

Similar weather as yesterday, but a whole new perspective.

 

Our sitter, Kay, has an 8 year old brother that has ADHD.  She thought she knew what she was getting into with Colin!  She’s told us a few times that Colin’s ADHD is much worse than her brother’s.  Rick and I were laughing the other day that she probably goes home from our house each day and hugs her little brother!  He likely seems like a cakewalk after 5 hours at our house.

But, similarly, there are children that I’ve seen that make even Colin seem like a dream.  I may have mentioned before that I was once at an ABA center where a young girl in the lobby could only scream/screech – that was her only means of communicating.  So, again, I’m thankful that Colin can communicate and can usually articulate his needs fairly well.

It’s all about perspective!

 

We have our next psychiatrist appointment tomorrow.  We’ve gone completely off the Adderall – it was just not working out for us.  It seemed to help his concentration but not his hyperactivity.  And the more Adderall he took, the more emotional he became – more outbursts, anger, sadness, etc.  The Seroquel seemed to help a bit, but not much.  The doc agreed with us switching him back to Ritalin.  He’s back on the 80mg of Metadate CD in the AM and then 20mg at noon of Methylphenidate…and another 10mg around 3pm.  Just trying to help him ease through the day and not crash. 

Part of me feels like we’ve just gone backwards – we’ve not only gone back to what we were on before, we’ve added to it.  But at least it helps.  And once we know what’s working the best, maybe we’ll try Concerta (still ritalin, but longer-acting) or maybe less Ritalin and add Intuniv or something along those lines.  Not sure.

For now, things are better than they’ve been for a while. I really feel the Seroquel has helped him with his outbursts when combined with the Ritalin. He seems to be in a much better mood.  Sleep is still an issue most nights.  The lock on his door at least provides some peace of mind.  Although, last night – after putting the boys to bed – I went to lay down with Rick for a bit.  I kept thinking I heard a noise, but the dryer was going and we figured that was it.  I was only in our room – with the door open! – for about 30 minutes.  After Rick left for work – around 9:15pm – I discovered that Colin had snatched the Wii remotes and disconnected the Wii cords…and was in his room playing with his Legos instead of sleeping.  So much for leaving his door unlocked until I go to bed.  I guess it can only be unlocked if I’m in the living room, standing guard!

More on Medication

I haven’t offered much of a med update in a while because I’m not sure what to say.  The 20mg Adderall XR doesn’t seem to be doing the trick.  It’s almost as if he’s unmedicated.  I’d say we should increase the dose, but his meltdowns have been coming back more and more – I’m worried that more Adderall will just make that worse.  He goes from manic to angry in a flash.  He moves and talks non-stop. He has zero impulse control. He’s messing with his brothers, the dogs, electronics – anything he can get his hands on. 

And I’m not sure the Clonidine is the solution we were hoping for, either – he’s getting up every night within minutes of us (or me) going to bed and sleeping on the couch.  That means he’s not really sleeping when he goes to bed (there are at least 2-3 hours between his bedtime and mine!). 

Yes, he’s staying in his room because the pill makes him drowsy, but he’s still suffering from insomnia.  And I’m not sure why he wants to be on the couch, but I think it’s likely the equivalent of his old sleep-with-his-face-under-the-door move he used do (it’s been a while since he’s done that). He doesn’t want to miss anything.  I’m not sure if it’s paranoia or anxiety or what it is that causes that fear of missing out.  If someone leaves the room, he immediately asks where they’re going and why. (He’s done this as long as I’ve known him.)

By Thursday last week, we were all pulling our hair out over his hyperactivity, getting into everything, messing with people, breaking things, etc.  Something had to give.

Rick called Dr. L first thing Friday morning and left a message with the receptionist to have him call us.

He never called.

I’m not sure what’s up with that, but it’s incredibly frustrating.

By Friday night, we were trying to think of what to do – we weren’t sure we could deal with another weekend of meltdowns and insanity.  And our sitter Kay was coming back on Monday – he’d driven her pretty insane her first day – so we were worried about her, too.

We decided to go back to something that works better.  I hate changing things around – especially without Dr. L’s knowledge and/or consent – but if he wasn’t going to help us, we had to help ourselves for now.  Ritalin works.  It’s not perfect, but it seems to work better for him than the Adderall.  And we still had a pre-written script from his developmental pediatrician that hadn’t expired.  This was just for his AM pills, so we were without the Ritalin booster for the PM, but we were given some short-acting tabs of Adderall, if needed, to go with the XR capsules (we tried that – didn’t help).

Our short term solution is going back to the 80mg of Metadate CD in the AM followed by 10mg of Adderall in the afternoon. Maybe Concerta will be the long-term solution. I don’t know.  I just know Saturday and Sunday were infinitely better. 

I don’t know what to do, and I hate that feeling of helplessness.  We were ALL miserable – all 5 of us.  Something had to give.  Hopefully Dr. L will have some other ideas to try.  I hate mixing up his meds all the time, but we need to find what works for him.  I don’t want a zombie for a kid – please don’t think I expect him to be zonked out and perfectly obedient 24/7.  I want him to be happy. I want him to have some control. I don’t want him to hurt himself or his brothers. I don’t want him to destroy everything around him (through lack of control). 

I want us to be a happy family.  I want to be able to take my kids out in public without worrying about the meltdowns (I know this might never change and I understand that). 

I want Ryan and Robbie to have things that are special to them without worrying that Big Brother will ruin them.

Ryan and Robbie’s play therapist told us last week that she gets the feeling Robbie is afraid of Colin.  I’ve worried about that myself, but it hurts to hear that from an outside source.  I don’t ever want my children to feel afraid in their own home.

On that note, I don’t want to feel the rage Colin can induce in us all through his lack of control.  I’m tired of the yelling. I’m tired of yelling. I’ve been trying to stop.  I don’t want my kids to think I’m angry all the time.  I’m not an angry person.  I’m just frustrated. 

This started as a med update and has turned into me whining. 

I just hate not knowing what to do.

In happier news, I’ve been scouring the internet for any kind of assistance – classes, groups, etc – for parents and siblings of autistic and ADHD kids.  The coolest thing I’ve found so far is a sports league for special needs kids!  They have bowling, soccer, baseball and basketball leagues.  For the kids that need it, they offer a league level with buddies – a volunteer stays with your kid through the games, etc.  They have altered versions of sports where everyone gets to play and no one’s left out.  I’m really excited about this.  Sadly, we missed the bowling cut off by just a bit – Colin LOVES bowling.  But now we can let him get involved in sports without disrupting an entire team. (We tried soccer last year and it was a pretty dismal failure!)

I need to just step back and take everything one day at a time. I know this.  Deep breath. 

So many people out there have it harder than we do.  I know that. My heart aches for them.  At least my kid can talk. At least he CAN run and laugh and interact with others.  He can (usually) convey his needs to me. 

And he hasn’t scared off the sitter yet! 🙂

Adderall Update #2

At Colin’s school, they give you a daily conduct report by way of a color scale – green is best, then yellow, orange and finally red.

Monday, Colin had a red day.

Tuesday, Colin had an orange day.

Wednesday, Colin had a yellow day… but he lied to his dad and told him he had a green day, so we recorded it (I have an incentive chart at home) as red (lying is not tolerated).

Today, he was already at “orange” by lunch time when Rick went to give him his afternoon pill. He hit another student.  He hasn’t hit in a very long time.  He also misspelled every single word on his spelling test.  He’s having control issues.

Yesterday, I called Dr. L for advice on what to do.  I had to leave a message and wait for his call back.  During that time, I did some online research.  I was aware that Adderall is considered a more potent drug than Ritalin, but I wasn’t sure what the dosage comparisons were.  I found a study online that shed some light.  It seems the general consensus is that Adderall is approximately twice as potent as Ritalin. 

Colin was on a hefty dose of Ritalin.  As I read more yesterday, I came to realize just how hefty.  I read that the maximum recommended dose of Ritalin is 60mg/day.

Colin was taking 80mg in the AM and another 20mg at noon.

He’s now on 10mg of Adderall in the AM and 10mg at noon.  If you do the math based on the 1:2 assumption of potency, that means he’s currently on about 40% of the stimulant he’s been on for the past year. Our hope (and our doctor’s hope) is that the Adderall will prove to be more effective as well as more potent.  Time and trial will tell.

The upside to less stimulant is his appetite has increased.  He’s become a bottomless pit!  He eats dinner – possibly seconds – maybe dessert after…and then asks for a snack.  Of course, we don’t just allow free range feeding at our house, so he understands that meals are at certain times and I try to offer healthy options.  He can definitely stand to gain a few pounds, but I won’t impair his health by giving in to his carb cravings 24/7!

When Dr. L called me back yesterday, we had a good talk.  First, he said that Adderall can cause insomnia, but that would affect him falling asleep, not waking up.  He falls asleep fine (thanks to the clonidine) but has been waking up entirely too early.  He also confirmed that – for Colin – 10mg twice/day is a fairly low dose.  He suggested that we try 15mg twice/day if we don’t see an improvement.  He also reminded me that we’re using the IR (instant release) medication to determine dosage and once he can be put on the XR (extended release) form, we will see less ups and downs in his mood/behavior/etc.  We have a follow-up appointment with him a week from tomorrow, so we can talk about the next steps then.  He told me to give him a call in a few days with an update and we’ll see how things go.

Rick and I have both been doing a lot of reading and wonder if adding Intuniv along with the Adderall might help. My worry about Intuniv alone was that it can lower blood pressure. However, stimulants raise the blood pressure, so the result may be the drugs counteracting each other in that department.

Of course, the idea of adding another pill makes me a bit ill.  But it doesn’t seem 100% stimulant is the way to go if he was able to take 100mg of Ritalin/day and still manage to be more hyperactive than just about any child I’ve ever encountered.

 

On a happier note… Colin has a birthday coming up.  I can’t believe he will be 8! He’s changed his mind a million times as to what he wants, but I believe he’s settled on a Wii Just Dance game (he loves this game).  I’m also thinking about making him a fuzzy blanket.  He loves smooshing his face on the dogs and rubbing on them at all the wrong times/places.  A friend suggested a furry blanket that he could use as a release for that impulse. Nothing too big, but something that’s just his that he can run his fingers through and rub his face on, etc.

And of course, there will be a mad dash through Chuck E Cheese.  All in the name of getting that glorious 10 seconds inside the infamous ticket blaster!

We discovered last year that you can have a birthday party of as little as 4 children at CEC.  We have 3, so we just booked the 4 kid party and called it good – Rick and I shared the 4th kid’s pizza slices and soda and we gave the extra tokens to the kids!

This year, I’m going to invite a new friend I made recently. We met at the park and her son is also a spectrum kiddo – he has Aspergers. Hopefully they can come and he can be our 4th!

Psych Visit #2

I’ve been a little lax on posting because I haven’t felt well most of the week. Yesterday, I finally called into work and went to see a doctor.  Everything checked out – just a bad case of allergy issues – so I got a shot of steroids and an Rx for antibiotics should things not improve.

The upside of being off yesterday was that yesterday was our follow up appointment with Dr. L, so I was able to go with Rick and Colin. Our appointment was at 12:45pm. Rick and I picked Colin up from school at noon and he wound up eating most of his lunch in the car on the way there.

Unfortunately, the good doctor was running about an hour behind, so we had some waiting to do.

Colin got anxious. He kept tightening his lips and looking around. He’d press his fingers on his throat and say he was thirsty. He wanted the TV turned off. He took about seven trips to the bathroom. Rick offered to take him outside for a bit, but Colin declined. He was very quiet…and incredibly nervous. He finished his juice box and wanted more to drink. The water fountain was back by the doctor’s office, so we told him he had to wait.  He stayed quiet, still looking around, wide-eyed, pressing his throat.  I’m wondering if he was having flashbacks to his butterscotch swallowing from the last visit.

The TV show that was on ended and a soap came on.  I could tell the voices on the show were starting to stress him out further.  At one point, someone on screen yelled at someone else and Colin’s eyes went wide and he rocked a bit.  I went to the receptionist and did something I rarely do – I asked her to change the channel.  If anyone should understand, a psychiatrist’s office should, right?  She glanced up and told me someone must have changed it because they never allow soaps. She quickly changed it to PBS.  I asked Colin if that was better.  “I just want it off, please,” he said, so politely.  I explained I couldn’t do that.  He asked a few more times over the rest of our wait, but never got upset.

After our hour of waiting – and a few more trips to the bathroom with Rick – we were called back.

Dr. L asked how the clonidine was working for us.  We explained that the .05mg dose wasn’t working, so we went up to the full .1mg dose after a couple of days and that seemed to help.  For a while, he was waking up earlier and earlier – as early as 4:30am!  But now that seems to have tapered off.  He’s waking up between 6-6:30am, which is wonderful.  I need that 15-20 minutes on my own in the AM.  Before, if I woke up earlier, so did he.  The slightest sound woke him.  He seems to sleep more deeply now. I can shower, let the dogs out, etc, and he doesn’t wake up.

As a result, we’ve been watching a lot more Animusic. Small price to pay!

Next up during our visit was discussion of his ADHD meds.  Rick and I both would like him on something longer lasting.  One of the biggest issues Colin faces are the highs and lows.  He’s on a roller coaster all day – he gets his morning pill…crashes…slowly amps back up until noon when he gets his afternoon dose….back down again…slowly amping back up.  Repeat. 

Therefore we discussed what we and the doc felt were the best options – Concerta or Adderall XR.  Concerta is essentially the same medicine he’s on now (a methylphenidate stimulant – i.e. Ritalin).  Adderall is an amphetamine stimulant.  Dr. L said that with the high dose of Ritalin Colin is already on, it may be a good idea to try a stronger drug like Adderall. He suggested we start with the short acting medication so that we can determine where he needs to be, dosage-wise, and then change over to the XR once we know how he reacts, how much he needs, etc.  We’re making the change this weekend – Saturday will be his first day on Adderall.  Fingers crossed. We’ll start with 5mg in the AM and then 5mg at noon.  If that doesn’t seem to be helping, we’re to give him a full 10mg in the AM and another 10mg at noon. The only real concern I have is that Dr. L said the crash from Adderall can be worse than that from Ritalin. I hope it’s not too traumatic.  I hope he reacts well and that this is a good change.  I’m nervous as hell.

As a side note, I think it’s interesting that Dr. L seems to possibly be on spectrum himself.  His mannerisms and the way he presents things… little things make me think there’s a high probability that he might be.  What really convinced me was yesterday during our session when Colin said, “What’s that noise?” 

I didn’t hear anything.

“It’s the speakers in the hallway playing music,” Dr. L answered.

I listened closer – oh!  I could hear it if I really concentrated!  But to Colin and Dr. L, I have a funny feeling it was the most annoying sound on earth.  He knew exactly what sound Colin meant.  Little moments like that make me feel like this is a good doctor for us. He’s not just someone who’s read a thousand books… he may very well be living through it as well.

Fingers crossed for this weekend.

“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” – unknown

After the whirlwind of a weekend we’ve had, I need to take a moment and recap our psychiatrist visit on Friday.  It was interesting to get another doctor’s opinion on everything.

While in the waiting room, filling out paperwork, Colin and Robbie (he was off school that day and had to tag along) wanted a candy from the candy dish.  We said okay – just one! – and they each grabbed one.  The choices were peppermint and butterscotch.  We told both boys to suck on the candy – don’t chew it.  In hindsight, it might have been better to just let them chew!  A few seconds later, Colin began freaking out.  He’d accidentally swallowed his butterscotch candy.  Panic ensued.  Screaming ensued. Rick kept his cool while I lost mine. He tried to talk him down, got him a cup of water and soothed him.

The beginning of our session with Dr. L was frustrating. I never feel like we’re able to convey the story of our days concisely or accurately when talking to someone new.  Colin kept wanting to play with anything but the toys in the office.  The doctor seemed very reserved and I almost felt as if he just had no idea what we were talking about at first.

Then something clicked and I suddenly felt like the doctor got it. 

He basically suggested a medication overhaul, but asked us where we would like to start.  We had no desire to change more than one thing at a time – otherwise, how would we know what was really helping?

We decided that what we really wanted for him first was more sleep. If he’d sleep more, everything else just might fall into place.

Dr. L prescribed clonidine – 0.1mg tablets – and told us to start by breaking this tiny pill in half to see how he does.  This is essentially a blood pressure medicine, so I’ll admit this makes me a bit nervous, but the doctor said it’s often used in ADHD kiddos to help calm them in the evening, wind down, etc.  (Click the word “clonidine” above to read an interesting article about it’s use.)

Friday and Saturday nights, we gave him 1/2 a pill.  We saw no results whatsoever.  He was still up until 10 or 11pm, still freaking out about every noise outside (and inside!).  Saturday night he even tried to tell us there was a scarecrow outside his window.  (Admittedly, whenever he says something like this, I tend to panic a bit, too!  What if there’s actually a man standing outside his window??) We checked – no scarecrow.

Last night, we decided to try a whole pill.  We also gave it to him earlier, hoping that might help him wind down for the night. Around 6pm, he took the pill.  We ate dinner shortly after.

I’m not sure if it was because it was taken on an empty stomach or if a whole pill just hit him that much harder than half a pill, but it definitely worked.  He was almost loopy, though.  I kept asking him if he felt okay and he’d say yes.  Asked him if he was sleepy and he kept saying no.  He was moving a lot slower and seemed almost tipsy. 

When bedtime came, he only got up once.  He slept from about 8:30pm until 5:45am. 

We’re going back to the psychiatrist in about a week and a half to discuss how this treatment is going and possibly move on to phase 2 of med changes.

 

The next phase he suggested was changing from Metadate in the AM and Methylphenidate in the PM with just one Concerta in the AM.  He said even Metadate CD (which Colin takes) only lasts for 4-6 hours.  Concerta has been shown to last for 10-12 hours because it is a slower release.  It’s still the same medicine – Ritalin – so I don’t think he’d react poorly or anything to the change.  And having a slower, steadier release of ritalin throughout the day might even out his highs and lows as well.

The last change – and the one we may or may not resort to, depending on how everything else goes – is adding Zoloft or another antidepressant.  I honestly think if he’s getting more sleep and has a more steady stream of ritalin througout the day, the meltdowns and depression might clear up on their own.  If not.. an antidepressant might be something to consider down the road.

 

I’m glad we’re making small changes.  I get knots in my stomach just thinking about it.  I hate trying to explain medication changes to any of my family/friends. Surely they must think we’re just doping our kid up. Do they think we’re crazy to try something off-label on a child? Even if it is FDA approved? 

But who do you trust? Who do you listen to?  If not the doctors and any/all publications you can get your hands on…who?  What can you do?  I don’t feel like we have the option to notmedicate him. I feel like we’re just trying to find the best options for him and everyone around him.  I need to drown out the noise in my head because a) it’s not fair of me to give voices to those I love when they haven’t actually said anything and b) they really have no idea what we’re going through, for the most part.  All Rick and I can do is work together to do the best we can for Colin.

As for the quote in the subject line… I know it’s one that’s been around the block a few times, but I saw it for the first time in a while when I was at Kroger yesterday. (We have one of those big, fancy Krogers that sells everything from steaks to couches!)  It made me smile.  Life isn’t about waiting for everything to be perfect…it’s about enjoying every imperfect moment. We may not have it all figured out – we may never get it all figured out! – but we’re doing our best to have some fun along the way.

 

“Is it wake up time?”

I feel strongly that medication is a personal choice every parent has to make.  There is no right or wrong – there is just survival and trying to do what’s best for your child, your family, and their future.

I recently made a friend whose son was diagnosed with ADHD and Aspergers. She has decided to go the med-free route because the meltdowns caused by the ADHD meds were too much.  I understand that.  I understand the worry, the anxiousness, the fear these meds can cause.

What I also understand is the way Colin behaves when he’s unmedicated.

He can’t sit still.  At all. Mornings are definitely the most challenging part of our days. When I first moved in, mornings were almost my undoing. 

We have a routine.  It’s pretty simple. Nothing that happens the night before seems to change the morning routine – we’ve tried it all.

Sometime between 5-6am, Colin stands in our bedroom doorway and watches for a moment before saying, “Good morning, Mommy!” (We had to create a rule of announcing yourself because one morning I woke up to his breath on my face and almost decked him!) The closer to 6am it is, the more likely I am to respond with “Good morning, Colin!”  Our rule – that we try ever so hard to enforce – is that it’s completely unacceptable to wake up before 6am.  Colin, however, will point out a 6 anywhere on the digital clock by our bed and say, “See? It’s 6! It’s wake up time!”

I groggily rub my eyes and look at the clock. “It’s 5:26, Colin.  It’s not wake up time.  It’s still bed time.  Please go back to bed.”

He leaves the room…and does God knows what. 

I call out, “Please go to your room and close the door, Colin!”

***SLAM!!***

(Slamming doors has become a great pastime for him lately.)

I rub my eyes and wander to the bathroom.  I flick on the closet light, hoping he won’t see that there’s light on in our room.  I email my husband to say good morning (he works overnights). I hear breathing that doesn’t sound dog-like coming from our bedroom.

“Colin?”

“WHAT?!” Copping an attitude whenever you call his name has become a routine I’d like to put an end to.

“Please go back to your room. I will come get you in just a minute, okay?”  I try with every ounce of patience in my being to not sound angry or frustrated.

“Okay,” he responds.

When I leave the bathroom, I hear him scamper across the living room. ***SLAM!!***

I grab his pills and head to the other side of the house. I let the dogs out.  Before I get to his room, Colin’s door swings open – lights are on inside – and he appears. “Is it wake up time?”

“Yes, Colin, close enough. Come on – let’s take your pills.”

He takes his medicine and then runs to the living room, throwing himself on the couch.  Somewhere between somersaults, he says, “I want frosted mini wheats.”

“Can you ask nicely?”  I’d say maybe once a week he actually does not need this prompt.

“May I please have frosted mini wheats?” Another flip. Maybe a headstand.

“Yes, you may – thank you for asking so politely.”

As I make his bowl of cereal, I hear him flailing about on the couch.  Sometimes he just sits and rocks, but usually it’s acrobatics.

“Please go sit at the table.  Please.”  It’s maddening – even after all this time – to see someone throwing themselves around like that when I can barely get one foot in front of the other.

I bring him his cereal. I let the dogs in and give them their food. One of them finishes up and goes to say good morning.  He’s swinging his spoon around in the air between bites – I can just picture all the drops of milk flying, even if they can’t be seen. I stop making my breakfast half a dozen times to tell him to leave the dogs alone while he’s eating. “That spoon belongs in your mouth or in the bowl.” “All four legs of the stool need to stay on the ground!”

Several questions are asked through a mouthful of cereal and milk, milk dripping down his chin.

“Please stop talking with your mouth full – I can’t understand you.”

Cereal is swallowed. “Are we going to school today?”

“Yes, Colin. It’s <insert day of the week here>. You have school today.”

“My brothers are sleeping?” (He often makes statements that sound like questions.)

“Yep! They sure are.”

“Why are they sleeping?”

“Because it’s not wake up time yet.”

“How do you spell <insert any number of random words – real or imaginary – here>?”

About 75% of the time I humor him. I won’t spell imaginary words.  I won’t spell BUTT (his favorite word). Or any other word I know he knows how to spell!

He finishes his cereal and by now at least one of his brothers is awake, sitting on the couch, rubbing his sleepy eyes. Usually it’s Robbie.

Within seconds, I hear, “COLIN!!!!!!!”

Colin’s back to doing acrobatics on the couch and/or has his head/leg/foot/hand/etc touching some part of Robbie’s not-quite-awake body.

“Hands to yourself, Colin!”

That never lasts more than a few minutes.

 

My point is… he wakes up full throttle. This is Colin as unmedicated as he ever gets…and he’s a firecracker. He can’t focus. He can’t sit still. His mind and body are both going a mile a minute. He has a million questions and a million compulsions all at once.

If you don’t give him his medication, he actually requests it. 

In the afternoon, when he’s almost due for his smaller dose, he asks for that, too.  I think he feels himself losing control. I don’t think he likes feeling that way. He’s also more prone to accidents, which scares me.  Early in the AM and late at night he’s far more likely to do a spin and slam himself into something (or someone).

I don’t have all the answers. I don’t even have a few of them.

I’m anxious for our psychiatrist appointment on Friday. I don’t know what I expect, but maybe having no expectations is best.