Feeds:
Posts
Comments

This is so messed up.

Since the sleeping medication appears to have worsened Matt’s anxieties and obsessive behavior, we decided to eliminated it.  Behaviors and anxieties have improved a great deal since we’ve stopped giving him this medication.  As far as his sleeping patterns………well, that’s another story. Here is an example of what the past few nights have been like.

8:00pm–Matt is ready for bed.

8:05pm–Matt falls asleep

9:00pm–Matt wakes up. Mom walks him back to his bed

9:05pm–Matt falls asleep.

10:03pm—Matt wakes up. Mommy gives him a melatonin, and walks him to bed.

10:25pm—Matt falls asleep.

1:15am—Matt wakes up and wants to watch a dvd.  Mom says no.

1:20am–Matt falls asleep.

3:02am–Matt wakes up and wants to visit. Mom says “The sun is not up. Go to sleep.”

4:00am–Matt falls asleep

6:45am–The sun starts to rise and Matt is wide awake. 

Good morning to everyone. 

Advertisements

More than autism

About 7 years ago, our family began going through a drastic change. I say began because this change didn’t happen overnight.   7 years ago, our family was thrust into a new world as a result of one word: Autism.  In that 7 years time, our outlook on parenting changed.  Our feelings toward other misbehaving children changed. Our views regarding chemicals, processed foods, wheat, dairy, vaccine…..all changed.  And on some things (vaccines), our views changed more than once.

Our family’s vocabulary changed too.  We frequently began saying things  like “spectrum”, “IEP”, “sensory overload”, “motor planning”, “casein”, “gluten”, “meltdown”, “stimming”, “thimerisal”, “toxins”, “Jenny McCarthy needs to quit beating the dead horse regarding vaccines”………………This is all very common language in the autism community. Except for maybe that last part. The thing about Jenny McCarthy is just  my personal opinion.

So we have come a long way in 7 years and I have a feeling our vocabulary is about to change again.  As I have mentioned before, Matt has been diagnosed with an anxiety disorder comorbid to his autism. In other words, autism is not the only thing going on with this child.  He’s been diagnosed with Autism and Anxiety Disorder-NOS (Not otherwise Specified) . The “NOS” part of the diagnosis is really a way of saying, “we know he has an anxiety disorder, but that’s all we know and we can’t narrow it down for you, sorry.” 

We have discovered this last week that the anti-anxiety medication Matt was taking has not helped his anxiety disorder at all. In fact, his psychiatrist has suggested that it could be making it worse, which would really explain the increase in  aggressive behavior on his part. Since my last positive, sunshine-birds-are-singing-life-is-great blog post, things went kind of downhill for Matt again.  Why would an anti-anxiety medication not help calm his anxieties? Especially after giving him a higher dose?  It’s a medication in the anti-depressant family of meds and the doctor told me “antidepressants can actually increase mania (such as in manic/depressive disorder)”.  So I asked her, “Are you suggesting that he has a bi-polar disorder?”  She answered. “It’s not important what we call the disorder. What’s important is that we find a way to stop these continuous outbursts and the way we might have to do that is by stabilizing his mood.”

I appreciated her response.  I know where she was going with it.  He has a serious mood disorder, but slapping a label on it at this point isn’t what our goal is here.  That’s fine with me.  We have a better goal now.  Stabilize his mood.  That means we jump back on our medication rollercoaster.  I think we are at our 3rd stop.  Since Zyprexa was a bust, we are now on Clonidine.  A high blood pressure medication that is often used off-lable to help with impulsivity and aggression.  So in conjunction with his therapies and help from us, I feel good about the direction we are going.  Its been 3 days since he’s been taking  Clonidine and his obsessive/compulsive behaviors have reduced by quite a bit.   

Here’s the draw-back.  That anti-depressant medication that the doctor suggested was making him worse, was also his sleeping aid.   Since weaning him off, Matt has been waking up several times throughout the night.  Ugh. We are still in the early stages of all this so I still have hope it will get better.  Here’s to a good night sleep…..maybe.

The power of prayer

A lot can be said about prayer.  Most prayers are in moments of crisis.  Even non-believers are said to have prayed to God in emergency situations.  Prayer is simply this:  Talking to God.   I do know that God wants us to talk to Him all the time, not just when we are in trouble.  I have been guilty of only praying when I need something. But that doesn’t mean God doesn’t listen. He does. 

You can imagine that this past year I’ve been doing a lot of praying.  It seems like we are always struggling with” Matt” issues.  Most of my prayers went something like this:

 “Please, God….please help Matthew.”

“Please help our family”

“Please help him to have a good day at school.”

“Please help him to sleep through the night.”

“Please help him get through the morning without an outbust.”

“Please help him walk to the school bus without an outburst.”

“Please give us strength to survive the weekend.”

Please give us strength to survive the next hour.”

When times are dark, its normal to feel as though God is at a distance. It’s also normal to feel as though He isn’t even there.  Seeds of doubt are planted, and hope is lost. 

Deep in my heart, I know that hope is not lost. Hope is what gets me up in the morning.  Hope is what gets me to church even though there are many times I don’t feel like going.  Like this last Sunday for example.  Matt had a tough weekend. We were unsuccessful getting the meds down him, he didn’t like what was for breakfast, and he became enraged several times because Alec looked at him weird. I just didn’t feel like going to church.  I didn’t feel like seeing happy families with their happy children walking together happily into the sanctuary. Nice christian attitude of mine, hu?  Truth is, I don’t believe that there is one christian in this whole world who can say they haven’t felt that way once or twice. But after the sermon is over, I always feel better. I am always glad that we came. 

Our pastor’s sermon was about prayer.  It was about praying during all seasons of our lives. Not just the season’s of strife, but also during times when things are going well.  He said “praying should be like breathing”. Yes, it’s that important.  After church, I took inventory of my priorities.  Prayer didn’t land very high on my list of priorities. I just did it when it was convenient for me.  I also realised there was a small part of me that doubted God was even listening.  I mean, if He was, then why hasn’t He answered me by now?  He knows what I want. Why do I have to keep telling Him?  After giving it a lot of thought, I realized how ungrateful that sounded.  Throughout this past Sunday and Monday, I prayed.  I praised God for all the blessings that we have. I prayed for other people, not just me.  I asked for forgiveness for doubting Him and trying to control everything.  And of course I prayed for our family.  When I started praying for Matthew’s outbursts to settle, I felt the doubt creep in.  As if Matthew can go an entire day without freaking out at home.  Yah, right! It’s been almost a month since Matt went a whole day without a meltdown and that was because he was sick! But I prayed anyway. I prayed that Matthew would have peaceful days at home. Yesterday was Tuesday.  Matt did not have one meltdown at home yesterday. Not one. He hasn’t melted down today either! Haven’t heard the day care report yet but he did great at school! He even played with his brother for an hour! I can’t remember the last time that has happened! Some peopel might think this mellow behavior is a result of the new medicine he is on.  I dont’ think so because we’ve had little success getting him to actually ingest the stuff.  The taste is nasty and he gags and spits it up.  Never underestimate the power of prayer!  I know I won’t!

More medicine fun

It may be obvious, but the title of this blog post is completely sarcastic. 

So the doctor prescribed Zyprexa for Matt. In a recent post, I went on about how I was reluctant in the past to give my son medication.  It has come to the point where it is very necessary. These expensive little yellow dissolvable pills are supposed to have a sweet taste to them.  This is clearly so it is easier to administer to young children, right?  Not my young child.  The first time I handed him the little yellow pill, he asked me what it was. “It’s your new medicine”, I said. Matt held it in his hand.  He stared at it. He sniffed it.  He squished it between his fingers (it’s a texture thing).  “Go ahead and eat it, Matt” I said. “It tastes kind of like candy”. I also handed him a glass of water in case he needed to help chase it down.

 He looked at me and then  placed the smushed pill in his mouth.  He swished it around in his mouth a little.  The pill must have some type of obnoxious aftertaste because moments after putting it in his mouth, he leaned over and spit it out in his water. Hmmmm, well that’s $2.33 worth of saliva in his glass. Sorry, thats Matt’s dad in me talking .

 “YUCKY!!!!!!”  he screamed.  Matt was upset with me for two reasons:  1. Because I told him it tasted like candy and it clearly did not.  2.  Because I had the audacity to suggest that he drink up the water that he just spit his yucky pill in. 

I chose not to  bribe or threaten right away.  For a kid with this amount of anxiety, such a tactic will usually trigger a large meltdown.  I did not want Matthew to associate taking his medicine as a negative event.  I decided my time and energy would be better spent finding ways of camouflaging the offensive tasting medicine.  Coke.  Matt loves Coke. I crushed the pill in to a powder and stirred it into a small glass of coke.  Here’s the problem with dissolvable tablets.  You can crush them, but once mixed with liquid, these floating granules have a ways of finding each other and clumping.  Added to the fact that these pills are florescent yellow, I am sure you can see the that the task of camouflaging was not easily accomplished. 

While Matt was in the living room watching Bugs Bunny, I turned the lights out so he wouldn’t notice the bright yellow specks in his Coke.  Then I handed the small glass to him.  He looked at me and smelled it.  Uh-oh! He suspects. He looked at me again with suspicion.  But he drank it.  Success.  That was day one.  Day two was a bit more unsuccessful.  He hates Coke now because he decided it tastes like “dog poop”.  Grr stupid medicine. I think I got 1/2 down him yesterday.  It’s too early to tell if it works.  He still has outbursts. A lot of his outbursts are now triggered by me trying to get him to take his meds. The only difference I see so far with the Zyprexa  is that he is a little more tired in the morning.  I had zero success getting him to take the medicine this evening. 

I will continue to brainstorm ways of hiding the meds.  Plan B will be having a reward for him if he takes it.  Sounds like a no-brainer-type plan but when you are dealing with high anxiety kids such as Matthew, it can actually be a recipe for disaster if the expectation is too much for the child.  I’m thinking of calling his doctor Monday to see about getting the medicine in a different form. 

“Matthew may benefit from taking prescription medication.” 

Always such fun words to hear.  I believe the first time we heard those words was when Matt turned 3 1/2.  His pediatrician was the one who suggested it. But she didn’t strongly suggest it.  Was I completely against the idea of medicating Matt?  No.  In fact, I was a little glad that we now had something to put in the “Plan B” file.  As I have said before, I always prefer to have  other plans on file in case plan A falls through.  But when Matt was 3, plan A was still in effect.  It was working…..well sorta. As a 3 year-old he exhibited some explosive behavior but he was small at the time and I was always able to restrain him if I needed to.  As we all know, that’s not the case anymore.  His outbursts are way more frequent than they used to be. 

It wasn’t until Matt was 4 years old when I decided that he wasn’t making any improvements with plan A. He was becoming more difficult.  By the way, plan A was the gluten/casein free diet.  It’s always worth a try.  It worked well for Matt’s brother.  The diet wasn’t hurting Matt, but it wasn’t helping him either.  I was still very nervous about starting him on any medications.

It wasn’t the doctor that convinced me to try pharmaceuticals, but it was Matt’s occupational therapist  who convinced me.  He said, “If your son had diabetes or cancer, wouldn’t you give him medicine then?” I never thought about it that way. I guess a part of me felt as though we were giving up if we put Matthew on medication.  I know now, that is not true.  Not even close and I’ll be damned if anybody tries to convince me otherwise. 

That was 4 years ago when we first got on the medication rollercoaster.  The very first medication Matt has ever taken (besides antibiotics)is called Risperdal.  Risperdal is an anti-psychotic drug that is often used to treat kids with autism.  Its main purpose is for treating adults and teens suffering from schizophrenia but research has shown it seems to help some children with autistic behaviors as well.  There is a great deal of controversy in medicating children with antipsychotics but I won’t go into that today.  Maybe in a later post.  After being on Risperdal for 1 week we noticed a huge change in Matt.  The outbursts reduced by 80%.  Happy ending?  Well Risperdal, like most medications, tends to lose its effectiveness overtime.  The only answer is to increase the dose or find another medication.   Increasing the dose equals increasing the side effects.  Bad side effects, such as weight gain, tremors, and a higher chance of developing diabetes. 

A few months ago, we decided take him off Risperdal since it appeared to stop working.  The doctor put him on Mirtazaphine (an anti-depressant) to help him sleep.  Matt lost weight (in a good way, he was 8 pounds over). Matt gained sleep.  Our hope was that the Mirtazaphine would help his anxiety and calm behaviors but it did no such thing.  This past Monday, I frantically called Matt’s psychiatrist to inform her that the explosive behaviors were not improving, and they were beginning to spill over into school and daycare. He now needs a personal assistant during daycare.   “Lets try Zyprexa”, the doctor said. Zyprexa is an anti-psychotic much like Risperdal.  Same ugly side effects.  “We’ll try it for 30 days,” she continued. 

I came home and googled “Zyprexa”.  Bad move.  Nothing positive being said about this drug. But then again, nothing good was said about Risperdal either.  I started to doubt myself and the guilt set in.  But I just reminded myself that it’s not long-term. Maybe it will help him get over this hump. Or maybe he’s dealing with a bipolar disorder and this is what he needs to function.  Maybe I’m just a bad mom. That last sentence was Satan chiming in so I told him to shut up!

So I just picked up the prescription for Zyprexa at the pharmacy. The pharmacist looked at me strangely and so did his assistant.  “This is for your boy?” he asked.  “Yes”.  I said.  “How old is your boy?”, he asked.  “Seven”, I answered.  He and the assistant exchanged looks and then he looked at me.  “Ok, I hope he doesn’t gain too much weight”, he told me.  I responded saying , “I understand how this stuff works and its only temporary”.  The pharmacist and his assistant exchanged looks again, almost like they were smiling.  “Ok, have him take one at bed time. Have a nice day. ”  I grabbed the medication bag…….JERKS!! Have a nice day? I just purchased $70 dollars worth of ANTI-PSYCHOTIC medicine for my 7-yr-old!  Do I look like a person who’s been having nice days?!?!  The  mom guilt set in again.  I put the medication in my purse and drove home. Tonight Matt takes his very first dose of Zyprexa.  Hang on tight we are about to start the next ride on the medication rollercoaster. 

The Evaluation

 

So, I have been putting off blogging about Matthew’s big Autism evaluation.  In my very first blog post, I mentioned a long anticipated autism evaluation was going to be preformed on Matt  scheduled  February 9th.  http://mygreatvillage.com/2009/11/19/hello-world/.

Well, that day has come and gone. In fact two weeks have gone by since the appointment.  The long 9 hour appointment that we were blessed to have his teacher and a family friend attend.  What was the big reason for this appointment?  To find out if he has autism?  Well, that is a given.  We know he has autism so why waste the money and the long drive to be told something that we already know?  It’s because I felt there was something more than just autism going on.  There had to be! If not, then why is it that in spite our efforts to help make Matt’s world more predictable, he still rages.  Several times a day even!  I have constantly been told, “Identify his triggers.”  Everything is a trigger! I don’t say that as an exaggeration.  

So what did this 9 hour long evaluation consist of? It consisted of doctors, therapists, surveys to fill out, interviews, and lots and lots of waiting.  At the end of the day, all participants of the evaluation–minus child and parents–gather together with their notes and come up with a result: The report.   This report, which is a rough draft, is then shared with the parents during the final meeting.  This is what I have been anticipating for the past 4 months. “Your child does indeed fit the criteria for PDD-NOS (Pervasive developmental disorder-not otherwise specified.)”  I am shocked. “But isn’t that the higher-functioning end of the Autism spectrum?”, I asked. “I always thought of Matt as being more moderate because of  his behaviors.'”

The doctor explained that when  adding up everything Matt did in fact meet the criteria for autism.  But at the higher functioning level.  She said the reason he appeared to be lower functioning is because of his explosive behavior.  She also said his explosive behavior is the cause of another disorder, not just autism.  Anxiety.  I told her I thought  that all kids on the spectrum have anxiety.  She said that while yes, this is true, Matt’s anxiety issues are much more severe and at a level that doesn’t match typical autism anxiety. 

This took me a while to process as you can imagine.  I felt a tiny bit of relief.  Relief that we weren’t failing Matt.  We were doing everything we could to help his autism…….but it’s his anxiety that overpowers everything.  Soon relief turned to grief.  Now what?  Modify his medication, of course.  What else?  The doctor STRONGLY suggested Intense Behavior Therapy. Hmmm ok, I will just go shopping for some of that as soon as we get back into town. I asked her what that was?  She really didn’t offer anything.  She suggested I check around our community and see whats available.  In her defense, she doesn’t realise we live in Hicksville USA.  Not a big city like Portland. 

So, that is where we are today.  Matt is now taking a whole Mirtazapine tablet instead of just 1/2. Thats Plan A.  We are still making phone calls and trying to figure out where the heck to find an Intense Behavioral Specialist.  That is also part of Plan A. 

 Those who know me well know that I usually like to have a plan B in case plan A falls through.  Plan B will be Prozac instead of Mirtazapine and maybe even a MORE intense behavior specialist (haha).  Plan C will be Valium…..thats for me. Stay tuned.

The Guilt Factor

This is a great article that I found posted on Twitter.  I think this speaks to all parents of special needs children.  If you are not a parent of a special needs child, please read anyway. This will give you an insight to what goes through our heads on a daily basis .  Please check it out:

http://www.nlconcepts.com/articles/guilt-factor.pdf