Reunited

Today I went to see an old friend
Years had passed and I wasn’t sure
Why I’d taken so long to visit

Familiar scent filled my nostrils
Hushed voices in quiet corners
Everyone is welcome here

Walking down the rows of pages
I lost myself as I used to do
In the hope of every tale not yet read

Judging them by their covers —
And by prose from random pages —
I found myself again

Anxiety, Achalasia, and Lynch Syndrome

Three years ago – while dealing with my cancer diagnosis – I was also diagnosed with achalasia. Essentially an esophagus disorder that causes difficulty swallowing either due to motility issues (food not going the right direction at the right times), stricture (tightening/narrowing of the esophagus), issues with the esophageal sphincters, or some combination of the three. The doctor who conducted my first barium swallow described it as someone squeezing the tube of toothpaste in the middle instead of from the end the way it should be done. 

While waiting to go into surgery for my colon resection, I asked my surgeon – someone I’d grown to trust quite a bit in a short amount of time – if he thought I should try the balloon dilation or go ahead and have the Heller myotomy. The former is a procedure where a balloon is inflated in the esophagus, stretching it and (hopefully) widening the esophagus where it has tightened to allow food to pass more easily.  The latter is an overnight hospital visit and involves cutting the lower esophageal sphincter (LES). I didn’t like the sound of either.  He strongly recommended I start with the balloon.

I had the balloon dilation done while I was on leave from my colon surgery. It was similar to going in for an endoscopy, I was just a little more sore after. Once the soreness subsided, I felt some relief – food was going down more easily again, I was throwing up less. But the change only seemed to last for a month or two. I started getting the chest pains again, food was getting stuck more often. But after recovering from the resection surgery, the last thing I wanted was another hospital visit. I decided to put off surgery for as long as possible.

I’m a fairly self aware person.  People have actually picked on me for how self aware I am at times – I know where dang near every freckle is on my body, I am rarely blindsided by illness. Perhaps I’m a bit obsessive/compulsive. When I ask someone how they got a scratch and they don’t even realize they have one, it confuses me – I can count on one hand how many times I’ve found an injury (bruise, scrape, etc) and not known its origin. Maybe it’s a touch of paranoia – not sure how or when it started, but I’ve always been this way.

Therefore, when it came to my own body turning against me twice in one year, I had to ask myself what I could do differently.  I went to visit a psychiatrist to discuss the possibility that my swallowing issues were caused – or at the very least, exacerbated by – stress and anxiety. I started noticing triggers – both psychological and physical – and planned my meals around them or avoided them when possible. Ice cold water causes physical stress and makes me lock down, for example – drinking anything too cold with a meal is a bad idea most days. Certain voices put me on edge. I tend to internalize my stress.

The psychiatrist prescribed dissolvable Xanax tabs. She suggested I put one on my tongue just before a meal. The first time or two, I was amazed. I could feel myself relax and I could eat!  But she told me this was a temporary solution – she wouldn’t be writing me prescriptions for Xanax long term. I also didn’t want to take them long term, so that was not an issue to me.  Instead, I tried to focus on how it felt to really relax my body the way the tabs helped me to do.  I saved the tablets for really bad days – anxiety-ridden days when my chest would hurt so badly that  nothing else would do.

After the resection surgery, my doctor tested me for genetic mutations – polyps and colon cancer in your 20s and 30s tends to be a red flag for mutation. I tested positive for a mutation of the MSH6 gene – one of the 5 gene mutations associated with Lynch Syndrome.  I’ll talk more in depth on this in a future post, but for now I will say that it carries a 70+% (above the general population) increased risk for colon and uterine cancers.  I had a full hysterectomy in July 2015 to remove that cancer risk and now go for a yearly colonoscopy and biennial endoscopy.

I bring it up now because I’m having a rough week. I’ve been tossing my cookies almost daily. I wasn’t sure why at first, but with a little introspection, it hit me: Monday is my colonoscopy/endoscopy.  I’m thankful my doctor scheduled it pretty quickly and I didn’t have to feel it looming over my head for weeks on end. Every year I feel I’m emotionally holding my breath from the moment I schedule to the moment he comes in and tells me how it went.  Each year they’ve found polyps. Last year my doctor found them on the opposite end from where they’d been found previously. He mentioned that I may one day want to consider a colectomy (colon removal).  That’s something I can’t even fathom right now.

I’m full of hope this year. I see some positive changes on the horizon, but I can’t even attempt making them a reality until I have a clean bill of health in my hand for another year. So while I’m full of hope, I am also ridden with anxiety. The “What If”s pervade my quiet moments and I find myself subconsciously adopting a holding pattern in almost every aspect of my life – I have to push myself to remember that yearly testing has been nothing but beneficial for me so far. An ounce of prevention and all that…

As someone who is painfully self aware, I almost look forward to drinking that horrible liquid and then going in for my yearly medically induced nap. Not knowing scares me infinitely more.

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.

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

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.

Dear Santa…

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.

Today Only: $21 donation per item purchased – Sevenly.org

I have so much to say right now – I swear I’ve written 3 blog posts in my head, just can’t find the time to get them on “paper.”

But right now, I just wanted to share this very quickly:

Sevenly.org is sponsoring a different charity each day this week. Today’s charity is Autism Speaks.  With every t-shirt, sweater or hoodie purchased, $21 will be donated to Autism Speaks!

Rick and I each grabbed a sweater and we bought one of the t-shirts for Colin’s special ed teacher.  What a wonderful gift to give someone that not only spreads awareness but also supports the cause through the donation. The more basic shirts are $22 – and with that purchase, $21 is donated!  You can’t beat that!

 

LIVE LOUD!

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.

A really interesting read – blogger summarzing the book Wheat Belly.

The Healing Project

For those that would love to read this book, but don’t have the time … I’ve summarized it for you!  Some very interesting information indeed!

“Wheat Belly is a provocative look at how eliminating wheat – even so-called healthy whole grain wheat – from our diets is the key to permanent weight loss and can offer relief from a broad spectrum of health and digestive problems.

Drawing on decades of clinical studies and the extraordinary results he has observed after putting thousands of his patients on wheat-free regimens, Dr. William Davis makes a compelling case against this ubiquitous ingredient.”

Chapter 1: What Belly?

• A wheat belly represents the accumulation of fat that results from years of consuming foods that trigger insulin, the hormone of fat storage.  Unlike fat in other body areas, it provokes inflammatory phenomena, distorts insulin responses, and issues abnormal metabolic signals to the rest of the…

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