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Posts Tagged ‘children’

A lot of books about autism have been given to me.  I haven’t read all of them yet.  I kind of pick and choose depending on what mood I’m in.  Many of the books are reference books and many are based on someone’s life.  Most of the books that I have seen are written by a parent of an autistic child. 

Recently my son’s teacher and my mother-in-law both told me about an article in our local newspaper.  It was about a writer who was coming to our small town to release her new book titled “How to be a Sister”.  My mother-in-law suggested that it would be great for me to contact her and get her book.  Hmmm. Get a book titled “How to be a Sister”?  I dont’ even have a sister.

The author of this book titled “How to be a sister”  is Eileen Garvin. She does have a sister. An older sister. A sister with severe autism. In this book, Eileen  narrates her own personal experiences of being raised in a family with her sister Margaret–who has severe autism.  This book is nothing like the others I have read.  As I said before, most books I have read are by the parents of children with autism. There are also many great books written by people with autism. 

What about siblings of children with autism?  Aren’t they affected too?  What roles do they play?  Eileen had a special bond with her sister that naturally placed her into a role as caregiver.  One of the things Eileen mentions is that “siblings of people with disabilities have all the same hardships as parents-only longer”. 

This book describes autism from the sibling’s point of view.  But this book is not meant for just siblings to read. I think everybody should read it. It is witty, humorous, heart-breaking, and affirming all at the same time.  Nothing is sugar-coated in this book. It is the real thing.  I am thankful for this book. I am thankful for the author. I am thankful for her sister Margaret. I am also thankful that my mother-in-law took Alec to the bookstore with her to buy Eileen’s book and have her sign it.  Alec was thrilled to meet Eileen and he was thrilled to know that this stranger knew exactly what he was going through.   http://www.howtobeasister.com/ 

HTBASCover

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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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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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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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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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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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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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