Tag Archives: Adderall

Once again, where to begin?

I guess I’ll start where I left off – that’s a good place, right?

We stopped the extra dose of Seroquel and that helped for a bit…but over the past few months, Colin’s mood continued to worsen.  He got into the habit of going to his room to break things when he got mad – usually his own toys, but still not a good habit!  We’ve continued with him going to play therapy every week – we alternate which brother goes with him – and that seems to be helping quite a bit with his verbalization and his relationship with both brothers.  (We’re getting less “I don’t know”s and more “I’m angry because ____.”)

A couple of weeks ago, we told Dr. L about the mood swings – Colin was often angry/sad at the drop of a hat – and Dr. L decided we should take him off the Clonidine and try Intuniv.  We started with 1mg/day for the first week, then up to 2mg/day after that.  As we eased into the Intuniv, he had us ease off the clonidine.  We stopped his morning and afternoon doses immediately and then eased off the bedtime dose. 

His mood improved within a couple of days – he stopped having meltdowns and seemed generally happy again.  His hyperactivity, however, was off the charts again.  After a full week on the 2mg of Intuniv, we called Dr. L and asked what he thought we should do as Colin wasn’t focusing at school and was very hyper.  He decided to up his Adderall XR to 30mg.  He hadn’t prior due to his weight, but considering he was on 100mg/day of Ritalin just last year, 30mg of Adderall didn’t sound quite so drastic.  (They do not make a 25mg of the XR or we would have tried that first.)

So far, things seem to be going well.  To recap, he’s on 30mg Addreall XR and 2mg Intuniv in the AM, then 50mg of Seroquel at night.  He’s still having some issues in the evening, but he’s doing pretty well the rest of the day – no wild mood swings, a LOT less anger…if anything, he’s a little too silly at times – I’ll take it!  He seems happy – that makes me happy.

 

And now… to explain what *I* have been up to the past few months.

Near the end of last year, I started having issues swallowing – food would get stuck on the way down and it was sometimes a bit painful, but mostly just annoying.  By March, I was tossing my cookies a few times/week and could not handle eating if there was even an ounce of stress – I’d taken to eating dinner after the kids were in bed most nights.

Mid-March, I accepted the fact that I couldn’t put this off any longer.  I wasn’t sure what the issue was, I just knew I was tired of this esophagus mess, so I called my GP.  He suggested I go see a gastroenterologist. I actually had one in mind because in 2005 I had some issues and wound up getting a colonoscopy where they found a polyp (benign) and removed it.  I’d been instructed to come back in 5 years…but time had gotten away from me and I just never went back.

First thing Dr. S said when he saw me was, “You’re 3 years late for your colonoscopy, you know that, right?”  Yes, yes…I told him we’d fit that in with whatever was involved in fixing my swallowing issues.

After a few inconclusive tests on my esophagus, I went for my colonoscopy.  They found 2 polyps this time.  One was malignant.  Suddenly I went from having throat issues…to being diagnosed with colon cancer at the ripe old age of 33. 

I went for another throat test that week…and a CT scan of my abdomen.  The CT scan came back showing no other signs of cancer, thankfully.  The throat test concluded that I have achalasia – essentially, the sphincter that connects my esophagus and stomach malfunctions.  (When you swallow, it’s supposed to open. Mine only opens when it feels like it!)  But that would have to wait – I was meeting with my colorectal surgeon the following week.

When sharing my medical news with family, I found out my great-grandmother (paternal) had colon cancer when she was a little older than I am now. She had surgery and no further issues – lived to the ripe old age of 98!  My grandmother also has polyps often, but none have become cancerous.

The things we don’t talk about!  No one discusses medical history that isn’t life-threatening, do they!?

I had surgery in April and spent the following 6 weeks in recovery at home. (Gee, Sara – you couldn’t throw together a blog entry during those 6 weeks??  No, apparently I couldn’t! lol)

On the 4th week, I went for an endoscopy with balloon dilation – one of the methods for treating achalasia.  The other option was surgery (overnight stay at the hospital), but I just couldn’t stomach the idea of spending any more time in the hospital at that point, plus my colon surgeon had recommended that I try balloon dilation first.

Thankfully, the first round of dilation seems to have helped about 75%, I’d say.  I’ve only had to vomit twice since the procedure, though I do sometimes feel food get stuck…at least now it almost always goes down.  I’ve been told that I’ll likely have to go back and have the dilation done again in the future, but I’m good for now at least! (The procedure essentially tears the muscle.)

My pathology report came back clear as well, by the way – they removed 19 lymph nodes from around the area where the tumor was and all came back showing no signs of cancer.  Yay!  I’m still waiting on my genetic testing results to come back, but otherwise I can stop thinking about all of this for the next year (I will be back for my follow up colonoscopy next year!!).

As you can see, it’s been a pretty crazy past few months for us.  I’m back at work now and the kids are enjoying their last week of school. I can’t believe Summer Break is almost here!  We were able to push Colin’s week at camp off until late July (he was supposed to go next week originally) so that I’ll have vacation time accrued again by then.  We’re hoping to take Ryan and Rob to CO for the week – a “normal” family road trip, if you will.  I want them to get to experience things Rick and I did as kids and that’s not always possible with Colin.  My mom is local and told us not to worry – she is listed as an emergency contact at the camp and can be there ASAP if anything should go wrong.

 

So that’s me.  Now I just need to find time to read through everyone else’s blog posts!  I’m quite far behind. I’ve checked in on a couple of you here and there, but not as often as I should have.  I spent the first 4 weeks of my recovery sleeping, more or less!

Hope you’re all doing well!

Roller Coaster Ride

what a ride!

That’s roughly what the last few months have looked like.

I logged in to write about it yesterday (as I have a few times before) and once again ran out of time.  However, I noticed something.  Even though I haven’t posted in entirely too long, people are still visiting this blog.  People are still entering searches that lead them here.  Therefore, I should keep writing.  It’s why I started this blog in the first place.  Once upon a time, I was searching for answers and I stumbled upon someone else’s blog.  She was a single mom with an autistic child. And unlike some of the other blogs I’d read, she sounded like me.  But her blog was long since given up.  I wished she’d kept it up – if she had, her son would have been roughly the same age as Colin.  What are they up to now? What have they tried? What worked? What didn’t?  I’ll never know.

(Even as I try to write this, I’ve been interrupted twice already!)

Here’s what I wrote on 12/21, but never finished the entry to post:

This past Wed (12/19), Colin went back to see Dr. L (psychiatrist).  We did something we should have done before, but never had – we took notes almost daily for the 2.5 weeks Colin spent on the new medication schedule.  Mrs. E (special ed teacher) also emailed us a few times, letting us know what she’d observed at school.
The first week, Colin was doing well in the AM, but not so much in the afternoon.  Rick was giving him his afternoon dose of Clonidine at home because we had not gotten the form filled out and faxed to the school yet (this is sometimes a challenge with our doc’s office).  By the second week, he seemed to have issues all day long – the meds were not affecting him nearly as much and he was back to distractions and hyperactivity.
Dr. L has upped his Adderall XR to 20mg/day and upped his dose of Clonidine in the AM to .1mg (he was taking .05mg before).
Yesterday was the first day on the new dosages.  He was downright zombie-like within 20 minutes!  After breakfast, he plopped down on the couch and buried himself in pillows.  When I told him to go get dressed for school, he told me he couldn’t get up.
Yikes!!
I asked him to try and he realized he was fine and able to go about his business, just a little slower than usual.
I got a phone call at lunch from Mrs. E – she wanted to discuss the new medications.  She told me he seemed very disoriented first thing in the morning.  I told her that concerned me, too.
THEN she told me that they’ve been working on double-digit addition for a while now and Colin has not managed to do a single problem on his own yet – he asks her for every step on every single problem, unable to recall what he needed to do each time.  Yesterday?  He sat down and did TWELVE problems without ANY help.
And then he wrote a full-page for an assignment he was given.
I almost fell out of my chair.  I had tears in my eyes, that’s for sure!
Things were good for a bit.  Then the anger started to amp up again.  At our psych visit in January, we expressed concern over the anger and Dr. L had us add 25mg of Seroquel in the AM (he takes 50mg at night).  We hoped that would help.  We also got the form signed and turned in so that he could take his afternoon dose of Clonidine at school instead of after he got home.  I thought maybe – just maybe – we were getting there this time.  Just a tweak here or there!  We’ll be fine!
And then over the last few weeks, school days have taken a turn for the worst.  Episodes of cursing, spitting, hitting, kicking, throwing his shoes, refusing to work, etc.  Yesterday was the worst.
I got a call from Mrs. E (sp ed teacher) yesterday afternoon – she was very concerned.  He’d acted out in the AM a bit, then was throwing food at lunch.  After lunch, they sent him to Mrs. E where he refused to work, kicked his chair, threw his shoes, started kicking the wall, cursed at his teachers and spit.  They took him to an empty classroom that’s sometimes used to let kids decompress.  No stimuli in there – empty room, blank walls.  They hoped it would help him calm down.
Instead, he amped up.  He started running circles and doing cartwheels and literally bouncing off the walls.  He never slowed down, just kept getting worse. After a while, they realized that wasn’t working and brought him back to Mrs. E’s room.  There, he continued to act out and then started hitting and kicking his teachers.  He had to be restrained by one of them until he could calm down.  He’s never gotten that bad at school before.
Once he was calm, he apologized to them.  He said he was sorry for hitting and spitting and saying bad words.  Then he sat down and took his spelling test and made 100.
They thought he might have calmed down enough to go back to the gen ed class room for the rest of the day, but when they went into the hallway, he started spinning and they knew he had to stay in the sp ed room.
Mrs. E knew Colin was listed as a “walker” and said she was going to walk home with him because she was really worried about his behavior today and didn’t think he should be walking home.  I explained that they only go across the cross walk and then Rick meets them and either walks home with them or they ride in the car.  She said, “Okay, I’ll keep an eye on him until he gets to Rick, then.”
I love Mrs. E. I don’t know how she does all that she does every day for Colin (as well as the other kids in her care).
We put a call into Dr. L to see what he thinks about everything – haven’t heard back yet.  I just don’t know what to think. It’s almost as if the extra Seroquel has made him worse instead of better.  Seems to go that way with any sort of mood stabilizing drug we’ve tried.  In the beginning, it seems like a miracle drug… then suddenly he takes a crazy left turn and we wind up worse than we were before.
In better news, we’ve been fighting with the school to get Colin a psych eval through the school system and they have FINALLY AGREED!  The testing will be sometime in the next 60 days.  Long story short, they did not like the testing that we had done 2 years ago and refused to accept his autism diagnosis.  They say they think it could be FAS or something else masking as autism.  I told them I don’t care WHAT it is, we just need answers so we can help him!
As I wasn’t sure whether or not we’d win this battle, I had also been looking for an independent evaluation again.  This time, touching on points that the school said they wanted to see, etc.  Our play therapist the kids see recommended a colleague of hers.  However, she’s out of network and it would have been very cost prohibitive.  That doctor, however, is a professor at TWU as well and she offered another option.  She has 2 grad students that need to complete a psych evaluation for their coursework and said that if we let them perform the evaluation, she will monitor the entire process and it would be free of charge.  We went ahead and jumped at the chance.  We’re meeting with them today for the evaluation.  I was tempted to let Rick take Colin and I’d stay home with the other two, but the more I thought about it… the more I really would like to stay, especially if they’ll let us observe the evaluation.  I’m interested to see if there are any changes in his answers from two years ago… also want to see what exactly they ask him.
Up again, down again… I know this is so hard on Colin, just as it is on us.  I don’t know how to help him, but we’re trying our best.

Where to begin? (med change & other issues)

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

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

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

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

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

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

How are we to know without testing?

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

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

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

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

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

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

As of yesterday, he’s taking:

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

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

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

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

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

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

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

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

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

It’s all about perspective

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

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

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

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

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

Similar weather as yesterday, but a whole new perspective.

 

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

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

It’s all about perspective!

 

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

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

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

More on Medication

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

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

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

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

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

He never called.

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

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

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

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

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

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

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

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

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

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

I just hate not knowing what to do.

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

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

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

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

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!

Words words words

Words are failing me lately. I have thought of so many things to blog about that I don’t know where to start. None of these things go that well together, yet on their own, they would each make for a pretty lackluster blog.

And yet… I feel odd not writing for days on end. 

We’re still struggling with medication issues.  Colin seems to be sleeping better, which is good.  He’s still wandering out at lord-only-knows-o’clock to sleep on the couch, but at least he’s sleeping.  He seems – to me – quite out of control on the 20mg Adderall XR and yet he’s having “green” days in school, so I’m not what we should do.  Mornings and evenings are more of a terror than usual.  Even sending him to his room doesn’t work, because he physically can’t stay in there for more than a few seconds at a time – door open or shut, it doesn’t matter. He will pop his head out or ask a question or tell you something every flippin’ 30 seconds.  I would honestly say mornings are better than evenings, but even that’s a struggle.  Within 5 minutes of waking up (if you’re lucky) he’s at 10 on the hyper scale. 

Evenings? He’s on 12.

The mixed blessing is he’s become a bottomless pit.  He’s out-eating all of us at most meals and constantly asking for snacks!  Hopefully he’ll gain a few pounds!

We won’t see the Psych until 5/31 due to scheduling issues.  Phone calls haven’t seemed to cut it – again, I never feel like we’re explaining things quite right.

 

Last Friday was Robbie’s Kindergarten Graduation.  So much cuteness.  I wish I could share some pics without violating the privacy of others, but I’ll just keep them to myself for now.  They put on a little production to show off what they’ve learned this year.  This school has been so good for Robbie. He’s learned a good bit of Spanish as well as improved his handwriting and spelling. He’s learned dance, theater and art basics.  He’s just blossomed in ways he never would have at the daycare we had him in last year. 

I was surprised to learn that most of the other parents are holding their kids back and repeating kindergarten in the fall – even kids that are technically old enough to be in 1st grade without any testing.  Here I am testing to push him ahead.  I don’t feel that my choice is any better or worse than those parents holding their kids back.  Sure, he may mature a little slower than the other kids in his class, but what about the ones being held back? They’ll be hitting puberty before any of their peers.  I have to imagine that it all evens out somewhere along the way.  As long as he’s capable, I want to give him opportunities to excel.

 

The other thing that’s been weighing on my mind…is me. In fact, I’ve been pretty self-absorbed lately.  Not entirely a bad thing from time to time.

I was going through the process to get the Lap Band procedure done.  Rick had it done almost 2 years ago and has just done great.  I even started a little side blog about it – http://eyeononederland.wordpress.com

Today, I got the call that I don’t meet insurance requirements.  No lap band for me.

However, through the past two months of working on the insurance requirements (the ones I was able to meet), I learned a lot about myself.  I’ve had a mental switching of gears and – lap band or not – I’m ready for change. I’m taking better care of myself and I have a goal in mind.  I want to lose 70-80lbs over the next 12-18 months.  Not unrealistic. 

I have studied nutrition so much over the past 15+ years – I know the ins & outs, I understand why I crave the things I do, etc.  I have always approached this part of my life scientifically – I’m not one for “fad” diets or insane exercise routines.  I love attending boot camps when I can afford to, but we also have a regular gym membership and my office building has access to a great walking path with shade that winds around a pond.

In anticipation of getting lap band, I had Rick take “before” pictures for me.  Front, side, back… the view from all angles were such a painful reality check.  The next day, I renewed my vow of fitness and nutrition.  I’ve been journaling my food and exercise – today is just day 4, but I already feel a difference.

I’m rambling. If you want to know more about all that, please take a look at the other blog… I ramble there even more. 🙂

 

I’m feeling a bit deflated at the moment.  Stress with Colin, summer approaching, lap band denial… I’m ready for that week in July when Rick and I can just relax and escape from everything for a bit.  I need to recharge.

My kingdom for a nap right about now. 🙂

Another Medication Update (and a visit from Aunt Missy)

Our psychiatrist’s mother passed away over the weekend.  We had an appointment this past Friday morning and got a call late on Thursday saying Dr. L had to leave quickly to help his mother and would not be there on Friday. They rescheduled us for Tuesday morning. 

Late Monday night, we received another call saying Dr. L had to reschedule again.  Poor doc – I can only imagine how stressful that all must be.  During it all, he still managed to return our calls and offer advice, etc.  He wrote us a prescription for 20mg of Adderall XR (extended release) and for clonidine – 0.2 mg this time.  He said if the XR didn’t last long enough, we might have to give him a booster in the afternoons. We’ll see how that goes.  He also said that if the 0.2mg of clonidine doesn’t do the trick, we’ll need to try a sleeping pill instead because he does not want to give Colin more clonidine than that. 

So far, the Adderall XR seems to be working out fairly well.  He’s still adjusting to it – and we’ve had family visiting, which can add to the chaos – but so far, so good.  And the 0.2mg of clonidine seems to help him fall asleep easily.  Unfortunately, he’s still not staying asleep, but I’m not sure if anything can be done there.  He has – twice this week already – gone back to sleep after waking up too early.  That was completely unheard of before.  The fact that he can do this now makes me think this is a good fit for him.  Of course I think it would be better for him to sleep through the night, but going back to sleep is a pretty wonderful alternative!

My sister is in town this week!  To the kids, she’s Aunt Missy.  And boy do these boys love their Aunt Missy! 

She may not have any of her own kids, but my sister’s done more than her fair share of babysitting over the years.  She’s great with kids.  Our boys go nuts when she comes over. 

For the last few years, she was living in Hawai’i and we didn’t see much of her.  She’s always been the cool aunt that sent the kids presents and the times they did get to spend with her have definitely left a lasting impression.  My sister is FUN.  She has ten times the energy I have and can just about keep up with these crazy guys.  They had her playing in the sprinklers, hiding in closets, picking them up, snuggling, etc. All three have been vying for her attention at the same time – it’s both hilarious and maddening to witness.

Ryan and Missy playing in the sprinklers

She’s so patient with them. I love that.  There aren’t many people who can stay as calm as she does around our boys – they could stress out Mother Theresa after an hour or two!  Whenever someone new comes around, Colin goes into hyperdrive – he has to share everything  he’s ever thought was neat or different in 10 minutes or less and ask at least a million questions.  The other two pick up on this and generate their own brand of crazy/silliness.  It’s mostly just them wanting the attention, I think, but it can be incredibly frustrating when all three peacocks are flaunting their feathers at the same time.

Monday night was insanity.  She stayed with my mom on Tues night…and thankfully things were a little calmer when she came back last night.

I wish I knew how to help them calm down in new situations.  The way they all start spazzing out at once makes me dread visitors and/or visiting others sometimes.  This is one of those moments when I think it becomes an extra challenge to have the oldest child as the one with special needs.  He’s the big brother – he’s “supposed” to set the example.  But that’s not possible.  And it’s not easy to explain to little ones why acting like your big brother isn’t always the best idea.

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?