Monthly Archives: May 2012

Little things that make you melt

Colin brought this home from school yesterday.  (Ryan made one, too – I’ll probably post that tomorrow as I don’t have a shot of it on hand and it requires a little more translation!)  Obviously Colin didn’t write all of this – you can tell where his teacher helped out – but the words were his. 

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“One day”

Colin makes a lot of requests.

He could put the demands of celebrities to shame, if given the chance.  He always wants more.  He’s not ungrateful – not in the typical sense of the word.  He just always wants to know what’s next.  And if something’s good, of course he wants more!  It’s a natural impulse.  Most of us are just raised that it’s impolite to ask for more – you should just say “Thank you.”  We’re trying to help Colin with this, too, of course – it makes for less awkward social situations – but it’s a bit of an uphill battle.  On the best days, we might get the oh-so-polite, “Thank you for frozen yogurt – can I taste yours?”  Or a thank you followed by, “Can I have the last bite?”  (What he really means is “can I have one last bite ” – typically the “last bite” he’s requesting doesn’t exist because it’s all gone!)

You could tell him we’re going to Disney World, and the minute you arrive, he’d ask if he’s going to get to go to Sea World next (hypothetically – not sure he knows either place exists!).  If you said no, he’d have a meltdown.  This can be really frustrating for parents trying to give their kids everything they can.  We’re not wealthy, but we try to make sure our kids have fun.  Whether it’s a trip to the park (free!) or finding discounted tickets to the zoo, kids’ museum, etc – we try to get out and do a little something fun at least once every weekend.  When you walk into a fun place that set you back a bit and the first thing your son does is ask for something better, it can really be a blow to the ol’ ego.

And “No” can set him back or throw him completely off into a tailspin, depending on the time of day, tiredness, and so on.

Colin has come up with an interesting alternative to “No.”

When you say, “No,” he often counters with, “One day? We can go there one day?”

“One day” brings hope and allows daydreams.  “One day” doesn’t let him down the way “No” does.  “Maybe” doesn’t even hold the same power.  If it’s not “Yes” then it has to be, “Yes, one day.” 

Some days I envy his optimism. I need to stop thinking that I’ll “never” do certain things and tell myself that “one day” I will.

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?

Tattling

When you have three kids – especially aged 5-7! – the tattling can get to be a little out of hand.  The most frustrating part for me is what they choose to tattle over.

“Ryan’s copying me!”

“Colin said ‘nanananana!’ in my face!”

“Robbie’s biting his fingers!” (And by this, I mean he’s biting on HIS OWN fingers, not someone else’s!)

But when Colin decides to rewire the bedroom TV, does anyone speak up?  When Robbie pees on the floor, do I hear about it??  No.

I’ve developed a new response every time someone starts to tattle and it sounds like nonsense. “Is someone hurt?  Is something broken??”

If the answer is “no” to both questions, I probably don’t want to know!  Especially if I’m in the middle of my 5 minute long morning shower. Those are MY FIVE MINUTES. Unless you are on fire or bleeding, please go away! (I’ve actually said that to my kids a time or two before!)

We’ve been trying to instill a sense of responsibility in Ryan and Robbie (our “neurotypical” kiddos, for those just joining this blog).  Yes, Colin should be – and is – held responsible when he breaks things or potentially does damage to electronics, someone’s bedroom, etc… but ultimately, you should have some level of responsibility for your own room.  I will set ground rules to help – Colin is rarely allowed in Robbie and Ryan’s room if they are not present – but you can’t claim blind ignorance if you sit back and let something happen. 

A month or so ago, there was a day when the boys were all home from school and Rick (who works nights) was trying to catch a nap on the couch.  While Rick was napping and Ryan and Robbie were watching TV in the living room, Colin walked through the living room to the master bedroom, collected a handful of various cords and cables… walked back through the living room (in front of R&R – this is not a big room or a big house!) and then into Robbie and Ryan’s bedroom where he proceeded to plug things in wherever he could – mostly in the back of the TV and into the wall.  His brothers didn’t say a word.  They swear up and down they never saw anything.

I discovered this when I went to get the boys ready for bed that night. I noticed the dresser that the TV sits on was pushed out a bit. I looked behind it and noticed all these cords and wires that weren’t there before (the only thing that’s ever plugged into the TV is a Leap Frog gaming system – and that plugs into the front). At the time, Rick and I had a box full of spare wires, cables, etc, in our room, and I knew that’s where they came from.  I called all three boys into the bedroom for an inquiry.  Colin confessed (he’s the one obsessed with electricity, so I assumed it was him anyhow).  The other two claimed complete ignorance of any misbehavior.

Colin’s probably twice as likely to tell on himself than he is to tattle on someone else.  If you ask him if he’s done something, he almost always answers truthfully. (Sometimes he’ll even confess to things he didn’t do, which is very frustrating.  I’m getting better at filtering out the false confessions.)

At the end of the day, if he’s done something ridiculous that no one has discovered, he’ll likely point it out.  Thank goodness.  Often, it’s a pile of parts to something he’s disassembled.  One time it was all his bedding stuffed inside a pair of underwear. 

Does your autistic and/or ADHD child hide his/her bad behavior? Or is s/he open and honest about it?  How do you deal with excessive tattling from your “NT” children?

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!

Robbie’s Trip to the Allergy Center

Robbie has always suffered from allergy issues – sneezing, coughing, runny nose, itchy eyes. About a year ago (yes, ayearago), our pediatrician gave me a list of pediatric allergists that might be able to help.  I filed away in my black hole (aka “my purse”) and forgot about it.  Each time I’ve cleaned out my purse (honestly, only about twice in that year!), I’d see the papers and think, “I should call one of these doctors and set up an appointment. I’ll do that this week.”

And I never did.

Well, I didn’t until about a month ago.  I knew Robbie and I had a couple of days off together, so I tried lining up doctors appointments. I scheduled him for allergy testing on April 30th (yesterday).

Robbie and I showed up yesterday and checked in. I’d filled out all the paperwork online, so we didn’t have long to wait. He’d just settled in with a tablet when they called us back.

The nurse was very friendly and took down his information. The doctor came in and we talked for a bit while Robbie wrote out various messages for her on a magnetic tablet they had in the room (just like the one that was in the waiting area). His handwriting amazes me more and more every day.  His spelling does, too.  I’m constantly amazed by how smart he is – sometimes I forget he’s only 5 years old.

She decided that allergies were definitely a possibility, based on the info we’d shared.  Another nurse came back in to prepare us for the testing and answer some questions.  They used a plastic device like this for the testing:

Robbie was able to touch it beforehand and see that it wasn’t anything terribly scary.  He’s so much like me at times – he wants to really know what’s going on.  Once when I was a kid, a nurse gave me a TB test…but instead of saying that, she said, “I’m just going to put little bunny prints on you!” She grabbed my arm and I FREAKED OUT!!  I was maybe 7 at the time. I already knew what a TB test was and if she had justsaidthat, I wouldn’t have gotten upset.  I wanted to make sure Robbie understood everything we were doing.  He also knew that we were doing this so we could help him feel better.

They set him up nicely with a little DVD player and some books.

He started to flare up on some patches almost instantly.

Ten minutes in, I knew that whatever was in “B” was to be avoided!

I didn’t get a chance to photograph after the full 20 minutes, but you can imagine it was just a more extreme version of what he looked like at 10 minutes.

As it turns out, A was trees, B was grasses, C was mold, cockroaches, dogs and cats.

My poor kiddo is allergic to the outdoors…mold…and cats and dogs.  For those of you just tuning in – we have two dogs.

The doctor said, “Obviously I would tell you to get rid of the dogs, but I’m sure you won’t.”  How could I? They’re like extra kids to us.  I love our pups.

She explained how we can help minimize exposure.  Robbie already has top bunk, so the dogs are never in his bed.  That night, I changed his sheets while he had a nice bath.

that's a Mario in his belly button, in case you're wondering

We’re going to do nightly baths (we typically follow more of an every-other-night-unless-needed routine) – that will keep him from tracking dog dander up to his bed. I explained to him that he needs to try not to snuggle with the dogs any more – no more rubbing his face on them, laying on them, etc. We’ll bathe the dogs more often, too.

As for the grass/tree issues… I think this will be his last soccer season for now. He’s not crazy about soccer anyhow.  (I’m guessing part of his lack of focus has to do with the allergies, too.)  I told him maybe he can try karate next – he liked the sound of that.

We’re going to give him either Claritin or Zyrtec and a dose of Nasonex every morning as well. Today was his first day and he took the nasal spray like a champ!

I’m hoping that his behavior at school might improve as he starts to feel better. I know I’m out of it when I don’t feel well, so I can’t imagine it’s helping him to be all stuffy and sneezy.

I feel like a horrible mom for not doing this sooner.

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.