Monthly Archives: April 2012

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.

Blog Spotlight: Life With Clay

I found this blog today and had to share.

Life With Clay

In his entry Wrestling with the tough questions, the author links to an article he wrote for Philly.com. What a wonderful read.  This boy’s story is inspiring.

I always love reading about parents of children near my son’s age, but lately I’ve found myself looking for blogs from parents of older spectrum kids.  A glimpse into the future, perhaps – a sign of encouragement.  Our journeys are all so different, of course.  Unlike Clay, Colin can speak fairly well. But I still have concerns about the future.

Please share your favorite blogs on Autism, if you will. I’m always hungry for more.

Animusic and Obsessions

Colin is absolutely obsessed with Animusic.

Animusic is a series of computer generated instrumental music videos. There are flashing lights and CG versions of different instruments… as well as fanciful instruments that don’t exist in the real world.  Robots with panels that they tap to produce sounds are surrounded by machines that spit out balls that land on marimba keys that go flying along a train track.  It’s visual splendor. Watching how all three kids react to the different songs and visuals is very interesting to me.  There’s one video on Animusic 2 called “Fiber Bundles” that our boys refer to as “The Monster”.  To me, there’s nothing scary about this video at all, but they are all a tad on edge when it comes on.  Sometimes Ryan will just leave the room.

Animusic 2 - "Fiber Bundles"

We borrowed Animusic 2 from my parents, and not a day has gone by since then without Colin bringing it up.  If we ask him to stop talking about it, he tries to be slick. “You know that new DVD? That one from Memaw’s? What’s it called?”

That’s his way of talking about things that he’s been told not to talk about.  I have trouble not laughing when he does that.  (Unless it’s been a particularly trying day, and then…well… then it’s pretty aggravating!)

When he watches it, he’s fairly calm.  Focused, even.  He mimics some of the instruments, while rocking to the beat.  Sometimes he snaps his fingers along with the music.  Occasionally he’ll freak out at others in the room if they’re not as enamored as he is.  Because if Colin is obsessed, he assumes everyone else is, too.  He can’t understand why we wouldn’t be.

He’s gone through so many obsessions since we’ve met.  Whenever someone meets him in the middle of one, they tend to guess that he has Aspergers rather than Autism.  But he alternates obsessions. They never completely leave him, but they become ancillary to the #1 obsession of the moment. Disco balls, car washes, sprinklers, roller coasters, tornadoes – he’ll still point these out and beg, borrow, and plead for them, but I think he’d trade them all in for another viewing of Animusic at the moment.

Removed posts

I know I don’t have a lot of followers, but for those of you that have been reading… I’ve taken down any posts regarding the recent drama. I felt it was for the best.

To the fellow blogger that responded to my last entry – thank you.  I probably should have let it go sooner. I’m trying. 

At the risk of “vague-blogging” (my husband recently accused me of “vague-booking” on facebook!), I’ll just leave it at that.

I love all my children – even the furry ones.

“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.

 

Siblings

No matter what the challenges, I’m so very glad Robbie has brothers now. Having siblings can be such a rewarding, maddening, wonderful experience. I should know! I was also one of three kids. I have a sister that’s 4.5yrs younger and a brother that’s about 6.5yrs younger. Our parents divorced in 2001. Since then, the relationship with our dad has been tenuous at best. About a month ago, he let down his walls and met us halfway. He finally opened up.

I got a call a few days ago from my sister asking if I could meet up with family on my dad’s side in a town about 5 hours from where I live. My dad was in town helping his mom move and we all wanted to meet up for dinner on Friday. Afterwards, my brother, sister and I would go stay in my grandma’s vacation home nearby. None of us could remember the last time just the three of us spent time together. No kids, no spouses, etc.

The drive was beautiful. Central Texas in springtime can be breathtaking. Wildflowers and green pastures in all directions. Winding through the hills on two lane highways going 70mph. Occasionally the speed limit drops as you pass through a town that time’s forgotten. Those towns tug at my heartstrings. Dilapidated houses and abandoned stores line the streets. Some towns have fared better than others. The town we were staying in falls in the latter category. Unfortunately, my grandma recently decided to sell this house and the surrounding land, so we’re trying to get some final visits in.

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Brother's puppy in front of grandma's house

When my grandma bought this house, we all thought she was nuts. This house was a disaster. She completely restored it. Furnished it with antiques, replaced broken windows with antique windows from other houses – the whole nine yards. This house is beautiful now. The land around it has been tamed so hikes to the pond are easy and beautiful.

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Side porch

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Pond

We headed to the house after dinner (which went very well) and had a few drinks while catching up. My sister’s boyfriend of seven years recently broke up with her. I didn’t know before last night. She’s crushed, but trying to keep her head up and she’s not really ready to talk about it. Just being together in that house – joking around together and having fun – seemed to be good for all three of us.

We crashed around 2am. At 7am, my sister woke me up. When I laughed at her for doing that, she said, “I wanted to spend some time together before you have to leave!”

The three of us went for a walk down to the pond with my brother’s pups. We each had a camera in hand – the flowers were in full bloom and the doggies were extra photogenic.

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My lil sis

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We walked into town for coffee, then back to the house to pack up and head out.

Through several moves, divorces, fights, parties, ups, downs and sideways changes…my brother and sister have always been there for me. I know they know that I’ll always be there for them, too.

I love my crazy siblings.

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Our Autism

I have goosebumps on my skin, tears in my eyes and a lump in my throat.

This is beautiful: Our Autism

This is our autism.

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Colin in his disco ball costume, Halloween 2011

“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.

 

Proin (and how we almost lost our pup)

Soon after we adopted Miss Chloe, we noticed this…dripping of liquid around the house. Chloe’s pretty much always got her tongue hanging out and she drools a bit, so we just thought that was it. Then we found puddles. And that’s when we realized the dripping was (primarily) coming from the other end.

Seeing as how we’d recently spent a big chunk of change on new laminate flooring, this was possibly a deal breaker. She was ruining boards left and right. We consulted our vet and he suggested it might be spay incontinence. Apparently it’s common for spayed dogs to have some incontinence issues. There are a couple of treatment options, but the most common – and cheapest – is Proin.

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Essentially, it’s a decongestant. Our girl was prescribed 75mg twice a day. It worked like a charm! We were thrilled! As a result, we were able to keep our sweet Chloe!

Today, however, Proin almost cost us Rodeo.

We were naively keeping the pills on the kitchen counter. Chloe hates these things – we pretty much have to put the pill in her mouth and stroke her neck until she swallows it. No amount of trickery has worked.

That’s why I knew what had happened the minute we saw the bottle. Top was chewed off and about 30 pills were missing. There was not a doubt in my mind as to which dog they were in.

I called our vet’s after hours number and told him what had happened. He solemnly told me there is no way to reverse the effects and we would have to rush him to the emergency clinic for a dose of valium if he started seizing.

I just broke down.

I love this stupid dog SO MUCH.
He’s the best dog I’ve had the pleasure of knowing in years. He’s my protector and my snuggle bug.

All I could do was cry.

I sat on the floor by him and stroked his fur. He was panting hard and the hair along his spine was standing straight up.

My phone rang.

It was our vet.

“I just called the CDC. They said epsom salts might work to induce vomiting. How long ago did he eat them?”

“I don’t know – we’ve been gone for about five hours. I don’t know when he ate them.”

It was worth a shot.
Rick ran to Walgreens and bought a box. I made a pitcher of warm water and found the turkey baster. We mixed the salts in and took him out back.

Rick held Rodeo’s mouth open as I squirted salt water down. After four or five basters full, he heaved…and threw up three barely digested pills. I’ve never been so happy to see anyone puke.

He stumbled into the yard and threw up a handful more. I started bawling the happiest tears I think I’ve ever cried. I think he threw up 15-20 pills in all.

I’ve been monitoring him since. His pulse is normal though his breathing is a bit fast. About an hour ago he threw up the most foul-smelling liquid!! Since then, he seems to have calmed down. He’s laying down and breathing a bit slower. He may actually sleep yet.

Maybe I will, too.

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My poor baby

Happy Easter!

Our boys woke up this morning full of excitement to see what the Easter Bunny had hidden in our yard. They were convinced the eggs were hidden out back, however Mr. Bunny was worried the dogs would get to the eggs before the kids ever did, so he hid them in the front yard.

We let them check out back first anyhow.

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Excuse the state of our fence...we've had to do a couple of quick patch jobs recently due to a neighborhood dog busting in

It only took a minute for them to realize there were no eggs out there. They headed back through the house and out the front door.

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I’m amazed I got any pictures considering how fast they swooped in.

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48 eggs found in less than 5 minutes.

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Robbie's haul

We went back inside and each kiddo got to pick out four eggs – the rest went into one bucket for sharing later.

Now…off to do the family thing and have lunch with my mom! I’m so very blessed to have a husband that loves – or at least tolerates! – my family.

Happy Easter, everyone!