Tag Archives: adhd

Quitter (or “Understanding Your Limits”)

I could come up with a dozen different titles for this blog entry.  I wonder if any of my old blogger friends will see this – I’ve poked my head in on this site a few times in the past year, but I haven’t been diligent about reading like I should…and I’ve clearly stopped writing for over a year.

As usual, I’m not sure where to begin. (I seem to start all my blog entries off that way.)

I mentioned my health issues from last year in my last journal entry – swallowing issues, colon cancer, etc.  I took all of that as a sign that my body was telling me I needed to make changes.  I was under a lot of stress. I think the swallowing issues are closely related to my stress levels.

I was not being a good mother to any of our children. I don’t feel I was being a good wife, either. I was finding any way to escape that I could.

So much I want to say here, but when I’ve looked online for women in similar situations, all I’ve found are throngs of posters discussing what horrible people they are for not only having negative feelings towards their special needs kiddo, but – God forbid – discussing those feelings publicly.

Maybe I just wasn’t meant to have three children, period. Forget the “step” and the “special needs” labeling – three children can be a handful. Many of you know this.  I don’t know how some women do it alone. (I’m looking at you, Rose!!)

Late last year, I started asking myself the hardest questions of all:  Can I do this forever? Can I continue living my life the way I have been? Can I get past the anger, frustration, anxiety and stress I feel as a mother of a child with special needs?

One morning – following an especially trying evening where Colin had peed on the floor in his room for no apparent reason – I lost my cool.  I was exhausted. I was tired of being disrespected. I was still angry from the day before.  A million excuses come to mind, but none of them is legitimate – none of them excusable.  I grabbed Colin by the back of the neck, got in his face and yelled. I made him cry. The bus had just shown up and – without apologizing or trying to calm him or myself – I sent him on his way and slammed the door behind him, then burst into tears myself – right in front of the other two boys.

By that point, I realized I was just angry all the time.  Just seemed like every day, something was setting me off.

Later that day, I got a call from CPS. When Colin got on the bus crying, they asked him what was wrong.  He told them I choked him. (Not what happened, for the record – but I understand that “grabbed the back of my neck” isn’t a phrase that would spring to mind for him.)

We went through the CPS process – we were interviewed, Colin was interviewed, the other boys were spoken to and photographed. In the end, they agreed that this wasn’t an issue of a child in danger – this was a mom who had a bad day and knew she’d made a mistake.

Though, at that point, I was already considering leaving. I’d done some soul searching and wasn’t sure I could handle staying – this CPS incident scared me even more.  What if one day I lost my cool with Colin and it cost me Ryan and Robbie as well?  What if one day he pushed me so far that I did something I wouldn’t be able to take back?

But these are things we can’t discuss.  These are thoughts you can’t even talk about with your psychologist.

My stomach is in knots sharing this, but I feel it needs to be said.  How can someone get help if they’re not even allowed to discuss it?

I remember the first time I made Robbie cry.  He was maybe a year old, sitting in my lap… he reached for something dangerous – hot coffee maybe? – and I raised my voice at him for the first time.  It shocked him and he started crying. I felt like a monster making this poor baby cry! I held him and apologized.

Aside from the occasional hand pop as a toddler to keep him from touching something he shouldn’t, I never hit my child. Never hurt him intentionally.

When I moved in with Rick, I didn’t know how to handle older kids.  I went from mom of a 4 year old to mom of a 4, 5 and 6 year old.  I went from someone who had only a very loose understanding of autism and ADHD to someone who’s world seemed to revolve around these diagnoses.

A friend said to me recently, “I don’t think you really understood what you were getting yourself into.”  I think he’s right. I thought I could swoop in with my patience and research abilities and find a way to “fix” things.  I tried so many things, and while I believe I did a lot of good…there are some things that aren’t “fixable” – they need to be accepted. Maybe acceptance is where I’m struggling.

I’m not trying to blame everything on Colin. Or Autism. Or ADHD. Trying really hard not to blame myself – I was doing that for months. Still do.

At the end of the day, you have to understand your limits. I don’t know what the answers are, but I decided that leaving was what had to happen.  Rick and I have separated.  I signed a year lease at an apartment complex not too far away – I didn’t want to move Robbie around during the school year, no matter which way we decided to go in the end. Ryan comes and stays with us every other weekend, which I love – I’m so thankful that Rick agreed to that.

I’m not sure what the future holds. I’m not sure that we’ll ever be able to go back to the way we were.  But I know that my son needs his mom to be happy and healthy. (I could/should write about how the whole situation was affecting him as well.) He needs the mom he remembers that loves snuggling and singing and playing games with him. Not the mom who is always angry or tired or stressed out.

I still worry about the selfishness of this decision. Rick thanked me at one point for acknowledging that I felt the way I do and for speaking up and leaving vs. bottling it up and/or becoming abusive.  Leaving is never easy – doesn’t matter what the situation is.  I’ve had people tell me I’m brave, but I feel like a quitter.

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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.

A complete 180

I know I haven’t been around much – I’ve had plenty to say but just haven’t found the time to put it all out there. 

Today, I’m frustrated.  Really, I’ve been frustrated for a couple of weeks now.  Colin’s been out of control and I just don’t know what to do – again.

We haven’t changed meds, we haven’t changed routine.  Everything is pretty much the same at the Crazy Antelope House.  Only Colin’s suddenly acting out at every. single. opportunity.

The moment an adult back is turned, he’s up to no good. In the last two weeks he has:

  • bitten Rodeo on the penis
  • spit on his brothers’ food
  • stolen Halloween candy from the kitchen
  • stuck a pair of tweezers in an outlet and blown a fuse (thank god nothing worse happened)
  • stolen a STEAK KNIFE from the kitchen and hid it under his nightstand (which we had turned around to face the wall because he kept hiding things in the drawer)
  • stolen a handful of straight pins from my sewing table and placed them in random places around his room
  • ran AWAY from Rick as he was picking them up from school (he was chasing a friend)

And the latest… today he ran away from school. (more on that in a minute)

We’ve gotten to the point where he has to be in our line of sight during every waking moment.  He’s not allowed to play in his brothers’ room at all and now he’s not even allowed to go to his room, either, unless its bedtime.  So now, it’s almost as if he’s sitting in wait… all I have to do is turn around to pack up leftovers and he’s biting the dog or messing with his brothers, pocketing something that isn’t his, etc.  It’s exhausting.

Today, about 20 minutes before school let out, I got a call.  Colin had run from the school.  I found out later that he was in his special ed class and just out of control.  The Special Ed teacher called the school counselor and asked her to come help.  Shortly after, Colin was spinning and dancing and refused to settle down…then bolted out the door.

He ran out of the school, across the basketball court…and into the woods behind the school.  He refused to come out.  Five different staff members tried to reason with him, but he wouldn’t give in.  Finally, they agreed to let Rick come get him if he’d just come back to the school.

(Rick’s phone went to voicemail so they called me next.  Rick and I then proceeded to try to call each other at the same time!)

Colin’s been suspended for a day.  Rick tried to reason with the staff members, explaining that keeping him home is just reinforcing the bad behavior.  Oh!  If I act like THIS then I get what I want – which is staying home!

Last week, he spent a good 2-3 days pretending he was sick and had lost his voice because he wanted to stay home.  I left work early on Monday to get him and take him to the doctor only to find there was absolutely nothing wrong.  No redness, no drainage, no fever, no strep.  Thursday he went to the nurse again and they called me. I told her if he wasn’t sick (he wasn’t) then he needed to go back to class.

He went back to the classroom and told his teacher that the nurse had told him to get his backpack and walk home – that I’d said it was okay!  Thankfully everyone at the school knows Colin well enough to double-check a story like that.

I don’t know what’s going on.  He does NOT want to be at school, which is obvious.  I don’t know if he’s starting to realize he’s different or what.  That seems to be the case at home – his brothers are definitely noticing more and more.  They have friends; Colin doesn’t really have friends. They’re allowed to go to play at someone’s house for an afternoon; Colin doesn’t get invited. 

I don’t know what else it could be.  Aside from the craziness at school today, he’s been fairly calm when making these horrible choices.  Rick noticed that today – he isn’t manic and impulsive like he used to be during the worst offenses.  In fact, he’s pretty dang calm.

Just this morning, we started having him meet with the play therapist (Dr. H) Robbie & Ryan were going to.  Our plan was to let Colin go every 3rd time, then every other time… slowly phasing R&R out of the therapy sessions.  We explained to them that they are doing great and we are SO incredibly proud of them.  They understand that Colin needs more help.  We also told them the door is open for them to go see Dr. H if they ever feel the need.

Today was his first day of therapy.  I wish he could go back sooner without upsetting the other two, but I don’t see how.

The school also seems to FINALLY be willing to do a psych eval and possibly accept the ASD diagnosis that we’ve had for 2 years now.

I sense some bumpy patches ahead.

And…we’re back!

What a great week!  (Can I go again? Please??) 🙂

Where to start?  I only have one kid back so far, so we’ll start with him!

Colin was so excited about camp – we’d been talking about it since the Open House in April.  For those who didn’t see my previous post, the camp I’m talking about is Charis Hills.  We arrived and were sent to check in Colin’s meds as he was swept away for a mini-physical and picture-taking.  While in line, we got to speak to a couple of other parents – their kids had been campers there before.  They raved about how much fun their kids had and how much they loved this camp and everyone involved. It was really nice to have people set our minds at ease right away!

In the medication line, I couldn’t help but notice the bags other kids had.  Our doctor had told us that Colin wasn’t on as many meds as we might think, and maybe he was right. Some of these kids had enough to fill a gallon sized Ziploc bag.  Colin’s four medications didn’t seem like much in comparison!

We double-checked his activities – apparently he and one little girl named Emily were the only ones signed up for dance!  I tried to sign him up for activities that didn’t involve sitting quietly or shooting anything (boating, fishing, archery and riflery were OUT!).  When we turned around, he was already on his way to his cabin! 

In the cabin, we helped him make his bed – top bunk! – and then it was time to change into his swim clothes for a swim evaluation.  He was pretty much pushing us out the door.  I think he must have said “Bye, Dad!” at least three times before we left!

One of my favorite things about this camp is that they have their own shutterfly account and they post pics daily!  That was really nice – we’d check out the site each night and see what he’d been up to.   Here are a few:

in class – they had study time!

Testing out the water

Swim lessons! Colin earned an award for putting his head under water before the week was over!

I found it pretty funny when we picked him up that one of the first things his designated counselor mentioned was how early he would wake up.  Apparently the kids were supposed to sleep until 7:30am – yeah right!!

 Otherwise, they said he did pretty well.  They sent home a little evaluation sheet that discussed how he did at meeting the goals we’d asked them to help him work on (assessing dangerous situations, developing a less inflated sense of self, etc).  They essentially said what we knew – that he doesn’t think before acting and will apologize after the fact, so he knows wrong from right, he just doesn’t have the impulse control to stop himself.  He got in trouble mid-week for touching/taking other people’s things, but he gave them back immediately without argument, so that’s good. All in all, he had a blast.  He can’t wait to go back again next year!  We will probably hear about “sleep away camp” (as he calls it) for months to come. — As this blog has gotten fairly long-winded already, I think I’ll save my yabbering and pictures on our kidless vacation for another post!  I need more pictures from the camera anyhow.  It’ll be like one of those old slide-shows your grandparents made you watch as a kid!  (I know, you can’t wait, right??)

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!

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.

Dealing with the darker side

I understand impulse control. I have a hard enough time controlling my own impulses and I do not have ADHD. There are times, though, when I worry about Colin because I don’t know how you separate impulse control from just plain bad behavior.

Impulsively pushing buttons, I understand.  Yanking the wheel out of his brother’s really nice pop-up Lorax book because he has to know how things work… that makes sense (even if it frustrates me).

Picking up our 65 lb dog by her collar and throwing her to the ground? I can’t comprehend that.  What makes a child – any child – think that’s remotely okay?  (Let’s not even think about how Chloe outweighs him by at least 10lbs. How he managed to lift her up by the collar – even with her back legs still on the floor – is beyond me.)

This is what I walked in on after leaving the room for a few minutes last night.  We were going to head to the gym after dinner – I went to wake Rick up – and I told the boys what the plan was.  They were all excited (there’s a Kids Club at the gym). I told them all they had to do was behave for a few minutes while I went to get Rick and change clothes.

I heard her yelp and came in to see Colin holding Chloe up by the collar. Before I could get to him, he threw her to the ground.  I lost it.

I’m fiercely protective of my children – even when it’s one against the other.  Even when they’re “fur” children.  I completely lost it.

And then I just started crying.  I cried for about an hour. We obviously didn’t go to the gym. I felt awful for Robbie and Ryan – they’re constantly being punished for things that Colin does and that’s not fair to them.  I was too upset to go and too upset to be left at home with Colin.

Rick blames himself, which I tell him doesn’t make sense.  He’s not to “blame” for Colin – he saved Colin from a far worse fate.  If anyone’s to “blame” it’s that b—- that gave birth to the poor kid and likely messed him up for life by how she mistreated him in those first fragile few weeks.  (For anyone just joining us, Colin was adopted through foster care – taken from his birth mother at 5 weeks old.)

Rick called Dr. L’s office again last night. Hopefully we’ll hear from him soon.  Something has to give.

ETA: I am not saying that all kids with autism/adhd were mistreated at some point. I hope it doesn’t come across that way – that’s not my intention in the least. Colin may very well have issues beyond the autism/adhd diagnoses he’s received so far. He was malnourished and mistreated as a baby – peanut butter shoved in his mouth to keep him quiet and never held or loved for those first five weeks. I know that irreparable damage was done to him – physically, psychologically, emotionally – before he was even 2 months old.

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! 🙂

Holding my breath!

We found a sitter.

Holy smokes! We found a sitter!!

Where?  Craigslist.  I know. I know.  I thought the same thing, too, but I was kinda desperate and our other efforts were leaving us fairly empty-handed.

I posted an ad Monday night.  We’d just met another potential sitter – the only one at that point – and I just didn’t think there was any way it would work out.  a) She doesn’t like dogs. We have two, so they would have to stay with Rick in the bedroom. b) She has an 8 year old and 1 month old that would have to come with her.  I didn’t think that would be a big issue until I saw it in action.  Our house was complete chaos for the 30 minutes she was there.  The 8yr old was adding to the silliness of our boys and the baby would have been a complete distraction had Rick not been helping.  And  c) She doesn’t have a phone…and she’s staying with her mom while she and her baby’s father work on things.  (What if they made up and she moved back in? She has no car and wouldn’t be able to continue working for us!) Just too many red flags for me.

So… I posted the ad.

I mentioned we needed someone energetic and patient and mentioned one of our sons is autistic and has adhd.  I posted the pay rate (which boils down to roughly $7/hr).  I know it’s cheap, but it’s just 4.5hrs/day and 4 days/week… no meals need to be served or anything.  Just give them a snack around 3pm and keep them from burning the dang house down. 

About an hour after I posted my ad, an ad went up from a sitter looking for work.  She listed the same area we live in and put that she has experience with ADHD children.  Her number, however, was an out of state number.  I thought (in my paranoid brain) this had to be some kind of lure.  I didn’t answer the ad.

Another hour passed, and I received an email – from the same girl who had posted the ad after mine!  She gave me her number and attached a picture.  I still thought this had to be some kind of a joke, but maybe not…? 

We exchanged a few emails – she’s relatively new in town.  17 and graduated from high school early.  She lives very close by and her younger brother – who is Colin’s age – has ADHD.  I decided to throw caution to the wind and have her come over.

She showed up and she’s REAL! 

We talked about what’s expected. She loves dogs – her family has 2 of their own.  We joked about how we were a little scared of this whole CL deal – she was, too!  She was great with the boys.

After talking, we asked when she could start. She said any day was fine.  Then she confessed that she’d had another interview earlier that day.  “I’m totally picking you over them, though, I just want you to know that!”  She said not only was that job a little out of her comfort zone – they had a baby, a toddler and a 9 year old and wanted her to work about twice as many hours – but our family reminded her of her own. 

Wait, what?  Did she just say that?

I guess maybe we’re a little more “normal” than we thought we were.  🙂

She starts today – a little trial run before she has 4 full days in a row!  She arrived 10 minutes early and ready to go.  I’m holding my breath, hoping the day goes well. 

Mostly, though, I’m just incredibly relieved.