Tag Archives: sleep

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!

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Changing of the knobs

I mentioned before that there used to be a lock on Colin’s bedroom door.  I was the one that pushed to have it removed.

I’m now the one that’s reinstalled it.

He’s never been one to sleep through the night.  I’ve known for a while now that he’s been sleeping on the couch most nights. I’ve begged, pleaded, bargained and threatened him to stop. 

Lately, he’s been doing more than just sleeping on the couch.  In fact, I’m not sure he’s sleeping much at all, despite our medication alterations and attempts at setting the mood before bedtime, etc.  He’s been scaling our entertainment center (a roughly 6’6″ shelving unit) and rearranging games and DVDs. He’s messed with my sewing machine (thankfully he hasn’t figured out how to turn it on yet – it’s an antique). He’s climbed around in the kitchen and played with the toaster (not sure what else, but I know he’s played with the toaster because the toast settings are almost always changed when I go to make the boys breakfast). 

I’m worried for his safety.  I’m worried for the safety of all of us.  He’s a big fan of electricity – what if he burnt himself?  What if that bookshelf came toppling over one day while he’s doing his Spiderman routine?  Even if we mount it to the wall, what if that big screen TV comes crashing down on him?

What if he starts a fire?  What if he gets it in his head to let the dogs out – or leave himself? 

I could go on for an hour with all the worst-case-scenarios I’ve dreamed up.  And these are all based on the few things I know are happening.  He’s getting quieter and sneakier.  He’s doing these things between 1-4am.  I can’t stay up all night.  He’s going to get hurt.  I don’t want him to get hurt.

After his most recent bookshelf-climbing adventure (Monday night), Rick and I decided enough was enough.  I re-installed the locking doorknob.

I told Colin I will only lock it when I go to bed and I will unlock it as soon as I wake up.  We’re talking roughly 7 hours.

I don’t know what else to do.  We’re talking about a boy who can literally climb a door jamb.  He’s 8 years old.  He’s strong and can be amazingly quiet when he’s doing something he knows he shouldn’t be doing. 

After I finished installing the knob, I sat down with Robbie and Ryan to explain what was happening.  I didn’t want them to think I’d lock them up if they tried to do something like use the bathroom at night.  I didn’t want them to think I was just doing this because I’m mean or that I don’t like Colin, etc.

I explained to them that it was for his own safety.  I told them about all the shenanigans that were being pulled during the night.  Robbie’s eyes went wide – these were things that had never occurred to either of them to try.  I told them that most of the not-so-fun things I do are to keep my boys safe.  I make them hold my hand in the street/parking lot, I make Colin and Robbie wear life jackets at the pool because they don’t know how to swim.  And now…now I’ve had to lock Colin’s door.

I hate this.  I hate the idea of locking a child up.  It goes against everything in my heart and my head, but I don’t know what else to do.  I can’t rubberize our house. I can’t put everything on the floor or lock everything up in the office.  I can’t stay awake all night long.

I just don’t know what else to do.

Seroquel

Dr. L called back the other day – Rick left an urgent message. Apparently he’d been out of the office for about a week and no one thought to tell us when we were leaving messages at the front desk.

He called in 25mg tabs of Seroquel (generic = quetiapine). We were told to give him 1/2 a tablet the first three days, then increase to a full tablet – taken at bedtime.

Seroquel is an “atypical anti-psychotic.” It’s used to treat schizophrenia, depression in bi-polar patients, and “to treat or prevent episodes of mania.”  The initial effect is drowsiness – which is why it’s given at bedtime – and then it’s supposed to help with the meltdowns through the next day.

As usual, I did a lot of reading.  There isn’t a lot of information on prescribing Seroquel to children, but that seems to be the case with many meds.  The worst I could find was that it caused nightmares in some and weight gain in most.  (Colin needs to gain weight – he’s incredibly skinny, even though he eats plenty.  He’s in constant movement, so he burns far more than he cares to eat. Being a picky eater doesn’t help!)  Many people compared it to Abilify saying that Seroquel helped with the anxiety in ways that Abilify didn’t – another plus for us.

Wednesday night, we gave him the 1/2 pill along with a now reduced  dose of Clonidine (0.1mg – down from 0.2mg). 

He got downright paranoid.  He kept getting up, telling us there were storms coming (yes, there were clouds outside and some lightning far off in the distance). At one point, he made me come look out his window at the cloud that “looked like a head.”  He just kept getting up. He was so nervous!  At one point, he came out and said, “I can’t breathe anymore and I can’t talk anymore.”  I said, “Honey, you are breathing…and you’re talking to me right now, okay?”  He went, “Oh. Okay,” and went back to bed.

He popped back up around 10:30pm – just when I thought I was in the clear! – and used the bathroom.  He went right back to bed, though, and didn’t get up until 6am. (And he slept in his bed!)

Last night… I honestly just screwed up. I completely forgot about the 1/2 pill to start and handed him a whole one.  I realized what I’d done entirely too late. So he was given 25mg of Seroquel and 0.1mg of Clonidine.

About 30 minutes later, he became incredibly drowsy.  It was almost 8pm (bedtime) anyhow, so I said, “Colin, why don’t you go lay down? You look very sleepy.”

He gave a half-hearted, “I don’t wanna go to bed yet, though,” and then let us lead him to bed without any further discussion.  He laid down and passed right out.

He slept until 6:10am.  That’s over 10 hours of sleep. I think the last time he slept that long, he was sick.  (That’s usually how you can tell he doesn’t feel well – he gets tired and still.)

We didn’t notice much of a difference in him yesterday – it will be interesting to see if the full dose helps at all today.  He woke up bright-eyed and bushy-tailed – his usual spunky, early morning self!  He got in trouble for messing with the dogs and was sent to his room while I made breakfast.  He pouted, but didn’t cry about it.  Otherwise, it was a wonderful morning.  We’ll see how this goes.

Our sitter made it through her first full week!  I handed her a fat wad of cash last night and her eyes lit up. 🙂  I don’t think she’s going to quit on us.  She seems to genuinely like our crazy kids and she’s come up with some great ideas to help keep them in line. Best idea so far?  A schedule.  She thought of that on her own.  Her brother has ADHD as well (though, she admits, far less extreme than Colin) and she understands better than most, although she still doesn’t quite grasp the autism aspect. The only downside I can see so far is that our house is COVERED IN GLITTER.  Covered.  Especially Colin’s room, since he snuck the container of glitter they’d been using for art projects into his room and shook it all over the place.  Our house is very sparkly now!

In other news, my stepdad’s mother passed away yesterday.  She was 102 years old.  Her funeral is on Tuesday.  I’m not sure if we should tell the kids – I don’t know how to.  And honestly, they know her, but she wasn’t a vital part of their lives.  If they never saw her again, I don’t know that they would notice.  Robbie might.  I could see him ask Pop (my stepdad) one day where his mom is.  But even that’s a very slim possibility.  I just don’t know.  Kay is going to come over early on Tuesday to watch the boys so we can go to the funeral without them.

I’m not sad for her.  I’m sad for my stepdad because I know he will miss her.  But she lived a very full, wonderful life.  These last two years have been the worst for her – she had to be moved out of her nursing home apartment and into a full time care room. She wasn’t allowed to leave the room without an escort.  Her few joys were basically taken away – she couldn’t go play cards with her friends when she felt like it, she couldn’t even go to the mailbox on her own.  She went from a cute one bedroom apartment with a balcony and her plants and knick knacks to a hospital room.  I think she was ready to go.

I’m sad for my mom, too, because I think her mother-in-law gave her some sense of purpose.  Mom was the most likely to take her to church or the zoo or out to the park.  If it wasn’t for my mom, the adventures would have been very rare. 

Rest in peace, Lucille.

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! 🙂

The Good, The Bad and The Ugly

The Good

It’s summer! Yay! (I don’t care what the calendar says – school is out, so it’s summer!)  The kids can sleep until whenever because I no longer have to rush to get them dressed in the AM – Rick can dress them when he gets home if I don’t get around to it.  And the only lunch I have to make is mine!  I left the house at my usual time this AM and got to work almost 20 minutes early – hurray for no school zones!  Also…it’s time for my favorite “sport” of the year – swimming. (I say “sport” not because swimming isn’t a sport…but because it’s not really a sport when I do it.)  I love going to the pool, lake, river, beach – wherever.  I just want to be in the water.  When I was younger, my sister could always outrun me, but she couldn’t out-swim me. (Pretty sure this has changed now that she’s gotten into surfing.) The water is always the one place I feel remotely athletic.

 

The Bad

Whew, boy, is it HOT by the end of the day!  Mornings are fantastic – 70’s and a bit breezy.  But by the time I get to my afternoon break and go for a walk, the air is so thick with humidity and heat, I get winded by the time I’m back at the office.

And the kids don’t seem to realize they can sleep in!  (By “sleep in” I mean 6:30am – that would be heaven!)  Colin was up at 5:30 this morning – he was sleeping on the couch again.  Not sure what to do about that. 

We also had a series of storms sweep through recently that left our fence in quite a state. Thankfully, no other damage was done, but now we have to figure out what to do with the fence on our own because our insurance deductible is too high to even bother going that route.  Rick has a friend from work that’s going to come out this weekend and hopefully not charge an arm and a leg!

 

The Ugly

The church-sponsored day camp (free to the public – donations only) that Colin and Ryan went to last year is not happening this year.  I was really worried this might happen.  It was such a blessing last year.  Colin was kicked out of daycare the summer before that. 

The 2nd day of camp last year, someone walked up to me and said, “Are you Colin’s mom?”  My heart sank.  Please, don’t kick him out, I thought.  Instead she said, “I wanted to ask you something, but I hope I won’t offend you.  Is he…autistic?”  I was still worried.  “Yes,” I said.

“My daughter, is, too, that’s why I was wondering,” she said.  “Don’t worry about him.  I will keep my eye on him.”  I just started crying.  I don’t know what we would have done last summer without that camp.

And now this year…we have to figure it out.  The good thing is that Robbie is out of daycare now, so we can afford to hire a sitter for the summer.  Just someone part-time so Rick can get to bed – he can continue sleeping when I get home.  We don’t have anyone lined up yet, but have a hopeful or two.  One lady was recommended to us by a good friend, but she flaked on showing up yesterday as we’d agreed to and she currently doesn’t have a phone – she calls from her mom or brother’s house.  And she’d have to bring her 8 yr old and newborn baby with her.  Just…so many red flags.  Still not counting her out – she’s supposed to come over today for us to meet.

Last night, after she flaked on me, I posted on FB asking friends to let me know if they knew anyone interested in a 20hr/wk babysitting gig.  One of my local friends gave me the name/info for a local high school girl that she’s friends with!  I’ve messaged her – hopefully if she doesn’t want the job, she will know someone who does. 

The Ugly, though, is going to be most of this week.  Rick is home with the boys today – no sitter or other means of distraction for them today.  Colin had everyone in the house on edge by 7am with his antics – he woke up full throttle today and was still bouncing as I left.  We’ve tried adding an Adderall booster (short-acting tablet) to the XR capsule, but giving him more Adderall just seems to make things worse.  His meltdowns increase and it doesn’t seem to do anything to put a damper on the ADHD.  Adderall seems to help his focus, but not his hyperactivity. 

Thankfully, tomorrow my mom (who just had surgery this past Thursday) volunteered to take them from Tuesday afternoon until Wednesday afternoon.  I hope she doesn’t regret that!  My stepdad is pretty good with them – he has an amazing amount of patience.  That will just leave us Thursday and Friday to get through.  Then, hopefully, we’ll have something in place starting next week.

Fingers crossed!

Otto Learns About His Medicine

Last night, I read Otto Learns About His Medicine to Robbie and Ryan. 

Colin was sitting on the floor nearby, putting a puzzle together.  He rarely sits with us when we read together, unless I’m reading Where the Sidewalk Ends (that one is my favorite, too).

Ryan and Robbie are always very excited when a new book turns up.  And this one’s bright red, so it was hard to miss that Mom was holding something new when they finished with their showers.

Before I started, I said, “While we’re reading this book, I want you to think about whether or not this story reminds you of someone you know, okay?  When I’m done, we can ask questions about everything and talk for a bit.”

The story tells of a little car named Otto (whose last name is “Mobile”).  Otto’s engine runs too fast.  He gets distracted by every little noise in the classroom. He speaks out of turn too much in class. He can’t hold still and sometimes runs into other cars without meaning to.  At one point, he ran off from a gas station while still getting filled up because he saw a friend with new racing stripes – gas wound up going everywhere. 

Otto’s teacher suggests to Otto’s parents that they take him to see a “mechanic” for a check up.  The mechanic decides he should go to another mechanic for more help.  They explain that the different mechanics, family members and teachers are part of the “pit crew” that is there to help Otto.  The new mechanic (specialist) suggests that another helpful member of the pit crew might be medicine.  He explains that medicine can’t make you learn or focus or behave.  It is there to help Otto – just as the rest of his pit crew is also there to help him.  They even discuss that sometimes medicine can have side effects and that this special medicine may make it hard to sleep and make Otto not as hungry. [I was a little surprised at the mention of side effects! But I feel they did a good job explaining what they meant.]

When the book was over, I asked the boys if the story reminded them of anyone.  I had a feeling I knew how this might go.

Robbie said, “That sounds kinda like me!  Like when I get distracted at school!”

I was worried he would relate to the book.

I said, “You’re able to sit down and focus when you want to, though, right?” He admitted he could.  “Does this book make you think of anyone else?”

Ryan quietly said, “It’s like Colin, right Mom?”

I told him he was exactly right – the little car Otto was a lot like Colin.

When I said that, Colin perked up – suddenly he wanted to know what was going on.

“This book is about a car that’s just like you, Colin!” Robbie was so excited. “It’s motor runs too fast, just like yours does sometimes! And he takes medicine like you do to help!”

Rick chimed in, “What part of your body is like a motor?  Can you think of a body part that’s similar to a motor in a car?”

The boys thought for a moment, but couldn’t come up with anything.

“How about the brain?” Rick asked.  They all agreed – a brain is like a motor!

Rick explained that sometimes Colin’s brain runs too fast and it makes things very difficult for him.  His brain tells his body to do and say things even when he knows he shouldn’t.  We explained that we’re trying a new medicine that can help.

“Can medicine make Colin behave?” I asked.

“Noooo!” answered the boys.  “It just helps him so he can try to make good choices!”  (I was really glad the book explained this aspect of medicine. Before, Robbie kept thinking that the different doctors and medicine were going to somehow be a cure-all for Colin – I think he’s been disappointed that we kept saying we were trying different things and yet Colin was still…well.. Colin.)

“Remember that part in the book where Otto couldn’t sit still?” I asked.  “Remember how he ran into the other cars and they got mad?  What did they do?”

“They pushed him back!” said Robbie.

“Is that what they should have done?” I asked.

“Nooo!  He didn’t mean to run into them – it was an accident. He couldn’t help it because his engine was running too fast!” Robbie answered.

“That’s right.  And sometimes Colin does things he can’t help, too. We need to remember that.”  I hugged my boys.  I think this book has helped some things about ADHD click for them.

Meanwhile, Colin had the book in his hands and was looking through the pictures.  “I want to read it now. Can you read it, Dad?”  It was already after 8pm – bedtime, for sure.  Rick promised Colin he’d sit down with him tomorrow and read it with him.

I’m thankful for this book.  It’s a bit wordy, but not too bad.  The only thing I’d change are the illustrations.  The cars stand up on their back wheels and start to look a little creepy during the “mechanic” sections.  I think the car metaphor worked well because our boys are big fans of the Cars movies and understand what a pit crew is. 

—-

Colin is definitely having issues sleeping.  Last night, he was still up at 9:30pm and I couldn’t keep my own eyes open any longer.  I was reading in bed and kept nodding off.  I finally called it quits around 10pm and shut off the light.

At around 1:30am, Chloe started pacing.  When she does that, it usually means she really has to use the bathroom. If you don’t get up, you’ll find a present in the house later.  I decided I’d take the dogs out.

When I walked into the living room, I saw Colin was asleep on the couch.  I’d bet he came out there as soon as he thought I was asleep.  I woke him up and sent him back to his room.  My guess is he’s sleeping on the couch more than I care to admit – that’s probably how he’s waking up within seconds of me in the morning. 

Thankfully, once he was in bed, he crashed pretty hard.  He was the last one up this morning at around 6:10am. 

The 20mg twice/day of Adderall has done wonders for him at school – two green days so far this week!  But it’s making sleep very difficult.  I feel bad for him.  Not sure what we can do to help.  I’m going to call the doc today and see what he thinks.  We have an appointment on Friday, too, but maybe he can suggest something in the meanwhile.

Adderall Auction

[No, no, I’m not actually auctioning off Adderall…hold your horses!]

I almost feel like this is an auction.  5mg! Do I hear 5mg?!  Okay, 10mg, 10mg? 10! Can I get 15mg, 15mg, anyone? You! 20mg – do I hear 20mg? SOLD! 20mg!

We went up to 20mg, twice/day, over the weekend and saw such an improvement!  Midday report from school also came back saying he was having a wonderful day today.

Yesterday, Colin did something I haven’t seen him do in months.  He sat down and completed a puzzle.  This used to be his favorite thing to do – he can knock out a puzzle faster than just about anyone I’ve ever met.  And then a few months ago, he stopped enjoying it as much.  When he would sit down with a puzzle, he’d get frustrated or distracted when he was part of the way through and give up.  Yesterday, he picked one of our more difficult puzzles – a map of the world – sat down and knocked it out.  He was so focused!  He even sat down and read a book at one point this weekend – without any instruction or guidance to do so.  He wanted to. 

I was worried that the meltdowns would return in the evenings when the meds wore off, but so far so good. What little anger/upset he’s had, he seems to be able to control fairly well.  I’m still worried about his sleeping.  I wish sometimes that we could rig a camera in the living room with motion detection.  I could have sworn I heard him up around 3am this morning, but the dogs didn’t budge or notice at all, so I figured I was dreaming.  He can be pretty sneaky when he wants to be.  He was up entirely too early over the weekend, too.  6-7 hours of sleep is not enough for a 7 year old.  (It’s not enough sleep for Mom and Dad, either!)

I ordered some books this past weekend – I’m hoping they may help us explain things better to Ryan and Robbie.  I’ll do a full review once we’ve tried them out, but here’s what I picked out.

Otto Learns About His Medicine by Matthew Galvin – A story about medication for children with ADHD.  In this book, Otto is a little car whose engine runs too fast and no matter how hard he tries, he just can’t stay on track and keeps getting in trouble at home and in school. Otto finds a special mechanic that helps him by giving him medicine for his engine.

Why Does Izzy Cover Her Ears? by Jennifer Veenandall – This is a story about a little girl named Izzy who is often misunderstood as she attempts to deal with sensory overload.

I found a few others that I want to try, but thought I’d start with these two.  I’ve tried in my own words – Rick has, too – to explain what Colin goes through to our other boys.  Best we’ve come up with is that you shouldn’t judge people – or make fun of them – for being different…and you need to have patience and be kind. We’ve explained that Colin can’t always control himself and that he says things he doesn’t always mean.  I’ve tried using the word “autistic” a time or two, but those conversations never seemed to go smoothly. We want them to understand him so that they can learn how to have their own relationships with their brother.  I read through probably two dozen book descriptions trying to find ones that matched our boy.  A lot of the Autism acceptance books out there deal with the non-verbal side of the spectrum, it seems.

I also bought a book for myself.  I’m hoping the boys will enjoy it in a few years – I’m not sure they’re ready for it yet.  I couldn’t pass it up.  They might be ready sooner than I think.  The boy in this book sounds a lot like Colin.

Rules by Cynthia Lord – “Twelve-year-old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “keep your pants on in public”—in order to head off David’s embarrassing behaviors.
But the summer Catherine meets Jason, a surprising, new sort-of friend, and Kristi, the next-door friend she’s always wished for, it’s her own shocking behavior that turns everything upside down and forces her to ask: What is normal?”

 

Do you have books that you’ve used to help others – your other children, classmates in your child’s school, family members, etc – understand your child’s disability?  What words do you use to make sense of it to siblings?

Adderall Update

It’s not going very well, in my opinion.  Saturday was our first day.  We gave Colin 5mg in the AM, but I wasn’t with him all day. Rick took him out to Charis Hills for an open house. I wanted to go – we were going to take all three boys – but my sinus infection had taken me down and I could hardly get out of bed.  Rick decided to take Colin and left Robbie and Ryan at home with me for the first half of the day.

Colin did fine at Charis Hills, but he also had plenty to keep him busy. So many new sights and sounds – people to meet, things to touch!  This is a camp for ADHD and Autistic kids.  We’re hoping to scrape enough together to send Colin there for a week in July.  (This is a pricy camp, but I think it would do him so much good.  He’d be surrounded by kids like him, counselors that are trained to work with special needs kiddos, etc. I think it will be good for all of us, really.)

He took another 5mg around 11:30am.

Saturday afternoon, he was a handful.  Bouncing off the walls, driving everyone crazy. He was pretty out of control. Saturday night brought a few meltdowns, but the clonidine helped him mellow out and get to bed. He was asleep by around 9:30pm, if I remember correctly.

Sunday, he was up at 5:30am. Rick let me sleep and got up with him. After shattering a pill in an attempt to break one in half (we were given 10mg pills and told to try doing 5mg first, then up to 10 if needed), he gave Colin a full 10mg. I don’t know that the morning really went any better. I wasn’t up until 9am (I love my husband!) and wound up passing out again around 11am for an hour. (I try to listen to my body – when I can! – in an attempt to really heal when sick.) We gave him 5mg at noon.  The rest of Sunday was very frustrating. He just couldn’t control himself whatsoever.  Beyond just body movements, he was doing things heknowsaren’t allowed (ex: locking the dogs in his bedroom with him). I tried to keep my cool. We tried our best to explain to his brothers that this wasn’t Colin’s fault and we needed to show some patience.  For me, being sick wasn’t helping.  By Sunday night, I was starting to feel human again, though. 

Colin couldn’t sleep Sunday night.  I felt bad for him. I don’t know if the extra medicine in the AM was messing with him or just the Adderall in general was an issue. At one point, he was standing in his doorway and I asked what was wrong. “I just can’t fall asleep,” he said. He never speaks that plainly. I told him if he’d lie down, eyes closed, in the dark…sleep would come. I think he finally fell asleep around 10pm. Maybe.

Yesterday (Monday), he was up around 5am. He might have been up earlier, but that’s when I heard him. He kept sneaking around the house, into our bedroom while I was in the bathroom – anywhere but his own room. I got very frustrated and read him the riot act, even though I knew I shouldn’t and I knew it wouldn’t help anything.

I gave him 5mg of Adderall.  We went into the living room and he didn’t say a word.  I let the dogs out and came back in…fed the dogs.  Still nothing.  I asked him if he was okay – he looked awful.  “Yep.”  He always says yes.

I sat down on the couch and called him to me.  I put my arms around him.

Me: Did you sleep at all last night?

Him: Yes. I just had to poop a lot.

Me: You had to poop during the night?

Him: Mhm. Can I have breakfast now?

I knew insomnia could be a side effect – it’s the same with all stimulant drugs. Rick checked and found that diarrhea can also be a side effect of Adderall.  Normally, Colin has the opposite issue since we have such a hard time getting him to eat fruits and vegetables.

Yesterday at school, he had an awful day.  The teacher said he was just hyper all day long.  He was given another 5mg of Adderall at noon, but that didn’t seem to help.

Last night, he slept.  Oh thank goodness, he slept – from about 8:15pm-5am. A decent night’s sleep.

This morning, we tried a full pill – 10mg.  I hate yoyo-ing like this, but we want to see if that helps at school. I’m worried he won’t sleep tonight, though.  I don’t think Adderall is going to be our answer.  We’ll probably give it a few more days, but so far this week has been rough and we’re only on Day 4.

“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.