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Posts Tagged ‘Anxiety’

There are many misinformed and judgmental people that Matt and I have encountered in his 7 1/2 years of life.  There will be more.  Most of the time, these people will catch you off-guard. Often times I will say to myself, “If anybody has any problem with my child, I dare them to bring it on! I dare them! They will be sorry!”  I am finding more often than not,  it’s not necessary for me to carry that chip on my shoulder.  It’s not my personality either……..most of the time. But when I do find myself in a situation where there is insensitivity and ignorance, I freeze and shut down.  Kind of like this computer does. Then after processing the events, I have all these clever things I wish I would have said during that time.     Here is a story Iwould like to share. Sure, it might be a little lengthy but you better read it! There’s a pop-quiz at the end 😉

A few years ago I took Alec and Matt to a pediatric dentist.  Alec had been there before but this was a first for Matt.  I spent weeks preparing him for the visit because I knew it would be a very difficult thing for him.  I also called the dentist’s office to explain the situation with Matthew.  “He has autism and high anxiety issues.”  I explained his sensitivities to lights and noise. The receptionist said that she would arrange for him to be seen in a quiet isolated room in the corner so that he wouldn’t be overstimulated by all the other children and  the noise.  I was thrilled with the idea.  I asked her if she could please prepare the doctor and the hygienists who would be working with him.  She said she would. 

Four days before the visit: I called the office to ask if they might have any questions about Matt so that we could  make this visit as successful as possible.  The receptionist (a different one, I assume) replied “Questions regarding what?”  I went over the story again about Matt with her and asked her to please prepare the staff for him. 

The day before the visit: I received a confirmation call regarding the appointment.  I asked what the small examination room that they were going to provide for Matthew looked like so that I could prepare him.  The receptionist replied. “I don’t know anything about that.”  I was surprised but then again….not so much. After patiently explaining things for the 3rd time, I was sure everybody was on board.

The appointment:  Alec was first to be seen.  The pediatric dental office looked like a fun children’s museum.  100% dedicated to kids.  The examination room was an impressive large bright room with dental chairs lined up next to each other. The walls were splattered with colorful wall art. And mounted on the ceiling for your child’s viewing pleasure was a flat screen tv.  One for each chair. The children even get to choose the movie that they want to watch.  A perfect place for kids like Alec.   I sat there with Matt on my lap as we watched them work on Alec. I explained to Matt step-by-step what they were doing.  Matt was  nervous. Matt repeatedly would say “I don’t want to!” I provided him with a squishy sensory toy but he wanted nothing to do with it.  Instead he squeezed my hand. I noticed the hygienist would look back at him several times.  She didn’t really say anything to him. I explained that he was over-stimulated because of the lights.   I felt he was getting ready to panick. 

Matt’s turn:  “Nooo!  I don’t want to!”  Matt yelled in a panick when the hygienist tried to coax him into the chair. “Matthew, look! You can watch ‘Finding Nemo’.”, she said pointing up to the tv on the ceiling. “Noo! i dont’ want to!”, he screamed.  She kept looking at me and appeared helpless. I told her,  “The receptionist told me by phone that he could be seen in an isolated room.  I think that would calm his nerves.”  The hygienist replied that the room was unavailable. Hmmm, what a shock. 

Matt’s crying was getting louder.  Then he began kicking his legs. “I want home!”, he wailed.

“Matthew, I will sit in the chair and you can sit on my lap.” I said.  He didn’t protest as I picked him up and sat him on my lap.  The hygienist was ok with this but she did mention that he would not be able to sit on my lap when the time comes to do x-rays.  I looked at her and said “I think its safe to say that he won’t cooperate with the x-rays.”  She nodded in agreement.  We were barely able to get him to open his mouth. 

“Matthew, we’re going to clean your teeth.”  She told him as she held up the spinning toothbrush.  “Do you want to cherry or cinnamon?”

“I want car!”, he shouted pointing in the direction of the parking lot.  I couldn’t help but notice the other compliant children quietly sitting in their examining chairs looking at him. So were their parents. Matt’s crying was becoming even louder.

The only thing that Matt would allow the hygienist to do was brush his teeth with a regular toothbrush and floss his bottom teeth.   He was on sensory over-load and terrified.  He knew everyone was staring at him which made him feel even worse.   But that wasn’t the worst of it.

 Doctor’s turn: So in walks the dentist, Dr Wonderful (We’ll just call him that for now). He’s the same friendly guy who worked on Alec.  He is quite a charmer, this dentist. The kids seem to love him. Clearly he has a gift working with kids…………working with neuro-typical kids.

By the time Dr, Wonderful walks over, Matt’s face is streaked with tears and he’s doing that hiccup thing that babies do when they cry hard. 

“Hey Matthew, what’s wrong, buddy?”  He asked.  The crying starts up again. The hygienist is clearly looking flustered.  “Where do you go to school, Matt?”, the doctor asked.  No response.  “How are your teeth, Matt? Does it hurt when you eat things that are cold?”, he asked.  No response.  Dr. Wonderful looks at me.  “He’s pretty shy, isn’t he?”.  Here we go again.  “He has autism”, I said.  Dr. Wonderful looks at Matt’s chart.  “Oh, ok. I see now”.  He said.  Does this office lack communication skills, or what?!

The hygienist filled Dr. Wonderful in on what we were able to accomplish with Matt….which wasn’t much.  “Ok, Matt let  me look in your mouth.”  The crying starts up again.  Dr. Wonderful puts his fingers in Matt’s mouth and Matt’s crying turns to screaming.  I repeatedly tried distracting Matt by reminding him of the yummy french fries we were going to get at McDonalds when we were done.  It didnt’ work. He became louder and louder.  Dr. Wonderful was getting pretty frustrated.  “At this point, all I can do is count his teeth.”, he sighed. ” He won’t even let me examine them.”

Then it happened. As Dr Wonderful removed his hands out of Matt’s mouth, Matt slowly bit down on the tips of Dr. Wonderful’s gloves. I saw the latex material stretch as he moved them away from Matt’s mouth. It was like extreme slow motion.Then Matt let go.  Dr. Wonderful put his face in Matt’s face and yelled, “DON’T YOU TRY TO BITE ME!!!”.  This wasn’t a stern scolding voice. This was yelling. The room got quiet. Matt got quiet, but for only a second. He began wailing. Dr. Not-So-Wonderful excused himself to help another patient because apparently we were taking up way too much of his time.  “I will be back in a few minutes.”, he said and walked off.

Matt was shaking by this point.  The hygienist didn’t say a word to us. She left to do something else.   Matt’s screaming out of control, despite all my efforts to calm him. People were staring and the staff practically disappeared.  What am I suppose to do?  I was so shaken by the Dr. Not-So-Wonderful-Jerk-Face screaming at Matt.  I felt frozen.  I felt sad.  I know that it has to be very frustrating for doctors when the children attempt to bite.  Nobody wants to get bit.  Truth is, Matt didn’t even bite down on his fingers. Just the tips of his gloves.  Did he have to scream at him?  I looked around the large room.  There were several kids in it with their parents.  There were several hygienists and dental assistants in the big room helping other people. I felt so completely alone.  I picked up Matthew and turned around and grabbed Alec’s hand.  “Come one”, I said.  “Let’s go.”  I walked at a fast pace with the boys on the way to out of the lobby.  “Ma’am!”  said the receptionist.  “Don’t you want to schedule a follow-up?” 

I couldnt’ even get the words out right away.  I stuck my sunglasses on, turned around and to face the receptionist.  “No, I don’t.”, I said.  And I walked out.  Matt was still crying and I was too. I remember passing this lady on the way out of my car.  She could tell I was upset but she offered me a very sympathetic smile.  I will never forget that.

Once we got in the car, I bawled for probably about 10 minutes.  Matt was done crying at this point.  Then Alec spoke up.  “Mom, will it make you feel better if I share my McDonalds french fries with you?”

………Ok so there’s no pop-quiz.  But thank for reading anyway!  🙂

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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. 

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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.

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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.

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