Neighbors

Just the other day, I was having a conversation with a friend who was telling me about all of the interesting things that go on in his neighborhood. He mentioned how he liked his neighborhood and all the quirkiness that comes with it. Such as a gentleman neighbor on the corner who wears spandex all the time. Or the girl from across he street who is always barging in my friend’s house forgetting the fact that it’s important to knock first. And lets not forget about the 60 yr- old woman from 3 doors down who is always chasing her disobedient puppy down the street while in her underwear. There were many other interesting features about my friend’s neighborhood. Features that actually have a resemblance of an episode of “Desperate Housewives”, but I won’t go into that. Sorry 😉

I said to my friend, “Wow, my neighborhood is dull in comparison.” I added, ” There’s nothing all that entertaining going on in this cul-de-sac”.  Then I pondered a little.  Well, there is that one gray house with the Christmas lights still up.  Yes!  That gray house with that family of 4!  One of the little boys in that family likes to walk this red bike around the cul-de-sac over and over again. He doesn’t even ride it! Every once in a while, you will see this same little boy run out in the front yard in nothing but his boxer shorts and socks! Sometimes he’ll do this in the dead of winter! Then his poor mom ends up chasing him all around the front  yard untill he jumps into the back seat of their car and locks the door so his mom can’t get him.  The mom just shrugs her shoulders and walks back in the house. As soon as the mom does that,  this boy will jump out of the car and run back into the house….but what happened to his boxer shorts???! Did he take them off in the car?  Sometimes I notice them in the driveway the  very next day. 

I notice this little boy has an older brother.  He doesn’t do the streaking-outside thing but I notice he is quite loud. I can tell whenever they are on their trampoline in the back yard.  Sounds like a hyena is being tortured but I know it’s just him having fun on the trampoline.  

Then the husband. Seems like a nice family man and a great provider.  But would it kill him to take the rest of the Christmas lights down so his poor wife doesn’t have to?  She’s the one who puts them up every year.  Poor, poor woman. 

Yes, this gray house keeps our neighborhood very interesting.  Would it surprise you to know  that me and my family are the occupants of this gray mad house?  

I often wonder what perspective my neighbors have regarding the madness that spills out the front door on an almost daily basis.  But then again, I don’t think I want to know entirely.  One thing I know about my neighbors is that they are all precious! They are not judgmental like many people.  My neighbors practically have front row seats to a great deal of what goes on outside.  They probably lost count of how many times Matt has launched his backpack in the middle of the street because it wasn’t fitting just right.  But they don’t judge.  They show love, acceptance, and grace.  We are lucky.  The neighbors directly across the street happen to have a son with Autism Spectrum Disorder who is grown up. They remind me that they’ve been there.  They know.  Even our neighbors who don’t understand the challenges of raising a child like Matthew-they still love. They still care. They don’t ever criticize or pretend he’s not there.  Not too many people in my shoes can say that about their neighbors.

 

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Shut up!

I hate it when my kids say “Shut-up!” to each other. So rude. So disrespectful. I suppose there are a lot worse things they could say to each other. I’m sure they’ve said them. But “Shut up” seams to be the number one top choice phrase between my two boys. They know the words have power. The power to tick each other off and the power to make mommy’s hair fall out. Alec will usually tell Matt to “shut up” as a result of Matthew scolding him or telling on him.

Matt: Alec, you can’t eat marshemellows. They not healthy for breakfast.
Alec: I can too!
Matt: Mommy, Alec eating marshmellows!
Alec: Shut up, Matt!

Matthew will often use the “shut-up” phrase out of context. Such as when an expectation isn’t being met:

Matt: You want to swing with me, Alec?
Alec: Not right now.
Matt: SHUT UP!!!

Well, I guess he still gets his point accross :8:

But still, I can’t stand hearing it.

A couple days ago John took Alec and Matt to his grandmother’s house while I stayed home. Alec and Matt love playing in their big green yard.  On that particular day, a boy who lived accross the street from his grandmother’s came over to play with them. The kids wrestled, chased, and played catch. They were having a blast.  All while John and his family observed from inside the house. At one moment, the neighbor boy had a stick and was trying to poke Matt with it. Matt protested and then the boy looked at Alec.  “What’s wrong with your brother? He’s stupid!” the boys said.  Alec marched over to the boy, “SHUT UP! Don’t poke him with the stick, he doesn’t like it!  And don’t call him stupid!  He has autism and its a brain disorder! I told you that!”

After that, the boy didn’t say another mean word about Matt.  According to Alec, the boy started playing nicely with Matt for the remainder of the time.  It’s probably a good thing that I wasn’t there. I tend to want to interfere when I should just wait and see how the kids work it out.  Chances are that if I observed the altercation, I might have had to demonstrate for the boy what it feels like to be poked with a stick. 

I was so proud to hear how Alec handled the boy. Never was I so happy to hear about my child saying “Shut-up!” to another :).

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I just remembered why we don’t go out to eat very often.

We’ve all had those moments, right? You know, when you take your children out in public only to realize later, you wished you had just stayed home.   I normally don’t fret about taking the children out to eat as long as the following conditions are met:

1.  It must be kid friendly. 

2. If I am taking both kids out, John must be present. (tag team)

3.  It must not be during the lunch or dinner rush hours. (less people)

Today we agreed to take the kids to a restaurant of Matt’s choosing. He has been sick and we thought it would cheer him up.  He chose a fast food mexican restaurant, “Taco Time”. Once we arrived, Matt went straight up to the counter and gave his detailed order of “a taco with hamburgers (ground beef)  and cheese and no salad on it and no sauce and tater tots and a root beer.”   Alec placed his order of a taco and rice. So far so good. 

Matt filled his cup with root beer and quickly sat down.  He was not satisfied however because once he sat down, the suds of his root beer had disappeared leaving his cup 5/7th of the way full :roll:. With my permission, I let him fill it up to a more justifiable amount (sigh). 

Lunch was served. The boys were excited.  Matt pointed to me asking me if I liked” Taco Time”.  No big deal except that he pointed using his middle finger because he had a cut on his pointer finger. Since he doesn’t understand that the middle finger is an offensive finger to use, I ignored it. Alec didn’t ignore it. 

“Matthew!  That’s the middle finger!!!!” Alec pointed at Matt.  “Wow! I can’t believe you used your middle finger, Matt!”, Alec said. “Mom would NEVER let me use my middle finger!”

I leaned over towards Alec and whispered.  “Alec, Matt didn’t use that in the way you are thinking.  He doesn’t even know what that means, so lets not make a big deal out of it.” 

Too late. Matt learned something new. “MIDDLE FINGER!!!”, shouts Matt. Then he giggles, “Middle finger, middle finger!!!” He didn’t actually hold up his middle finger.  He just kept saying “middle finger” and giggling non stop. In my book, he may as well have been flipping the bird at everyone within eyeshot. 

“Matt, if you can’t use good manners in the restaurant, we will go home”, said John. “I’M SORRY!” said Matt.  Whew, got through that. 

I immediately changed the subject.  We know many kids on the autism spectrum like to stick to one category for a while, especially if its fun.  I decided it was time to move away from sign language profanity and talk about our food.

“Is Taco Time healthy?”  asked Matt.  “Not all the time.”, answered John.  “But apples, are healthy”. 

“Not too many apples.” said Alec. Then he added  “Too many apples give you diarrhea.”  I was glad Alec chose a quiet voice when he said that, but Matt chose a louder voice. “Apples can make you have diarrhea?!”  He said loudly.  Then Alec chimed in using a less-than-quiet voice “Yes, they make you have diarrhea!”

“Boys!”  I said. I went over the rules of restaurant etiquette with them. I also regretted that we didn’t practice this at home.  Taking them out one at a time was never like this!  Thank goodness the restaurant wasn’t full but I did notice one of the diners there was somebody I went to school with. She also works at the same doctor’s office where Matt goes.   She was with her husband. 

After giving the boys the “How to Not Gross People Out” lecture, they began eating again.  Then Alec started giggling, clearly reminiscing about diarrhea and the middle finger.  Time to redirect.

 “Alec, I see that you are done. Please put all the garbage on the tray in the garbage can over there.”  I said.  As I saw him get up and walk over to the garbage, I noticed his shoes weren’t on.  I saw other people looking at his feet as he trotted over to the trash in his white socks.  He took his shoes off?!?!  As I was about to give him the “How to Not Contract an Unpleasant Staph Infection” lecture, I was interrupted by Matthew who just let out an incredibly loud, obnoxious burp. 

“Matthew Kenneth!!”  I said sternly.  At the same, John said, “I see that it’s probably time that we got out of here.” 

“I’M SORRY!!!!”  Matt shouted.  John and I began clearing off the table and the boys grabbed their pop’s and headed towards the door. At that time, I noticed Matt’s shoes were off!.  What the……..!!  “Matt, go get your shoes on!”

“I’M SORRY!!!!”  Matt shouted as he ran over to get his shoes. 

On the way out the door, I made eye contact with the highschool friend and she was smiling……more than just smiling.  Smiling big.  Almost like she was struggling to keep from laughing her head off.  That caused me to laugh and I walked over to her shaking my head saying, “I am so glad I don’t have to explain him to you.” She laughed some more and so did her husband as they shared a similar story about their kids.  That made John and I feel better.   So after our short conversation, I said good-bye and ran off to get my shoeless, gassy child. 

If you have an embarrassing story to share regarding your children, please share!  It makes the rest of us feel a little more normal 😉

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When ignorance hurts

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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Hmmmm…..

After having Matt completely off the Mirtazaphine (night-time antidepressant drug that helps him sleep) for 5 days, I decided to have him take 1/2 of one last night just to see if his behaviors would in fact become worse:

And the results are in:

Obsessive/Compulsive behavior—worse

Moodiness–way worse

indecisiveness–way way worse

Irrationality–way way way worse. 

Causing mommy to age faster than the speed of light—you get the picture.

Is this just a coincidence? 

But hey, he did get a great nights sleep! (sigh)

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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.

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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!

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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. 

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The medication rollercoaster

“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. 

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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.

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