Christmas Vacation

It is nearly Christmas. This is a good thing. For the past month L. says "Tomorrow is Christmas!" and we have to remind him that it's not. We show him the calender and count down the days with him. Funny thing is, he thinks that by marking off the days himself that will make those days just disappear. He does the same thing at school with his schedule. He tries to rearrange the sequence or takes things off he doesn't want to do. If only that were an option!
Last Friday was his last day for two weeks, so comes the daunting task of trying to keep him occupied until he goes back to school. We got him Jungle Book 2, which I think is a really annoying and very ill thought out movie, but he loves it. So now the other children are bummed because that's all he wants to watch. I feel for them, I don't really care for the movie myself.
What's up with Disney putting out all of these cheap sequels, with bad animation and cheesy catch phrases, that have the same basic plot, with a few token songs, slapping their name on it and selling it for the full price? Desperate parents (such as myself), who jump at any family movie that is released because there are so few that come out unless it's Thanksgiving or Christmas, must settle for an inferior product. Look at me, I'm grudgingly one of them.
Anyhow, L. is perfectly happy with it but the rest of us are near to mad. Just think another week and a half of it! Actually, we are being very brave this year and trying for an over night visit to Grandma and Grandpa's house. L. does not like sleeping anywhere that isn't home, so we are a little worried, but hopefully it will work out. And just in case it doesn't, I'm sure we'll bring along Jungle Book 2 to calm him if need be.

School Notes Home

Each day when my son L. gets home, I grab his backpack first thing and rummage through it for his notebook. This notebook dates to the beginning of the year when his teacher Mrs. R. started sending notes home on his progress and little things that happen during the day that I might have an interest in. Some days say he's had a good day, was cooperative, did his work, etc. Some days aren't so great. He was stubborn, refused to follow his schedule, etc.
The entries that I like best are the ones that tell me a little story about some funny thing he did that day. For instance, he said he wanted to play doctor. The teacher's assistant cheerfully agreed, even after L. said he was going to give her a shot. Well, the poor woman got the shock of her life when he stuck her with a straight pin. Not that I'm laughing at her misfortune, but for some reason this really made me laugh. The other day a little girl in his class had a birthday party. He promptly ate the piece of cake he was given and then went over to her and opened his mouth wide and tried to get her to feed him her cake.
His teacher Mrs. R. said that one day a child in her class was having a melt down, L. tried to push them aside and as he said, "I'll deal with this." Apparently he thought he could do better. So while I cringe at the entries that state he had a bad day, I find great joy in the little laughs I get from the other stories I get to read.

Halloween

L. went as spaghetti and meatballs this year for Halloween. He mostly did well and had fun. However, when he was done, he was done. He got in the van and cried because he thought his little sister should be in her car seat. Every time I tried to take a picture he would see the flash go off and immediately move. My camera always catches him blinking, or making a face, or moving, or walking away. I managed to get a few shots of him though. He is actually really excited about holidays now. I'm so glad, because now the other children can have a semi-normal experience too. They all looked so cute dressed up, with their bags, eagerly anticipating each candy that got put in their bags.

He seems to be doing so much better and understanding so much more than he did before. This is something we discussed on Halloween with his teachers and principal during a parent teacher conference and an IEP update. They have noticed the change in L. as well. He is not as angry and he is communicating more. That's not to say that all of our problems are solved, but it sure seems like cake after some of the things my husband and I have been through over the last few years. I thank God every day that he seems to be getting a little better. I know that it is through help from those around me that we have accomplished so much with him. I consider it nothing less than a miracle.

Vacation

For the past two weeks I have been in Cambodia. After serious debate, my husband and I decided that we should not attempt taking the younger children with us. We had visions of L. throwing a tantrum on the airplane, having them drop us off somewhere in Asia with no way of getting back. Besides which, it is torture for L. to not have his own bed, and be in his own element. So we chose to have my two sisters stay with the children at our home while we were gone.
L. was perfectly content with the set up. As a matter of fact, I sincerely doubt that he even missed us while we were gone, most likely favoring my sisters over me. There was little more than one small incident during our absence. Apparently L. decided to cut his hair. He was suppose to be in bed, which is usually when he decides to do something naughty. He felt that he needed a trim and cut his hair. My sister said that he came down stairs with his hair completely hacked up in what resembled the mange. She burst out laughing. She said that L. was grinning ear to ear, pleased with the fact that she was experiencing so much mirth over his self make over.
The next day he went to school like that, as there were no beauty salons open so early in the morning. The teacher said that she and the aids got a good laugh out of it too. He got his hair buzzed that afternoon when he came home from school. I count myself lucky in that that was the only mishap during out two week leave.

Birthday

L. had a birthday just a few days ago. I think it was the first time he really understood what it was all about. A week or so before I said to him that his birthday was coming up and he shocked his father and I by stating the day, month, and YEAR he was born. I don't recall ever telling him that he was born in 1999. Weird that he somehow knew. All he wanted, as usual, was a Buzz Lightyear. (Does every autistic kid on the planet love that guy or what?) We got him a few things and I tried to hide them in my closet. This is something else he has never done before, he snooped around until he found where his presents were and then he opened all of them before the big unveiling at the party.
My parents and two of my sisters came to have cake and sing to him. He seemed very pleased with the whole affair. I was really excited that he got into it so much. L. is beginning to come out of his shell a little and act a little more like a child. He knew that the day was about him, that it was his birthday, that the cake was in his honor. It was a thrill.

Little Sister

L. has been fiercely loyal to, and inseparable from his baby sister from the moment she was born. When we brought her home from the hospital for the first time he was completely and totally enamored with her. Since then he remains very over protective to the point of being a tad obsessive. It was difficult to explain to friends and family when they wanted to hold the newborn and he would throw a fit and tell them to give her back to mommy. This included grandparents. They would hold her and dote over her and he would cry and try and take her away from them.
As the years have gone by, three to be exact, he is not as bad about it as he use to be. L. is still very protective of her but not to the point that he won't let others touch her now. However, if I have to take hers with me and he isn't going he gets upset, even to the point of tears. So the other night when she fell off of the bunk bed and had to be taken to the emergency room for stitches, there was some high drama.
My husband, who hands blood, needles, gore, and the likes, much better than I do took her to the hospital. I'm sure that with all of the frightened shrieks coming from me, L. wasn't exactly sure what was going on, but he was upset, and even more so when my husband left with his baby sister. He stood at the window for hours whaling, "My daddy, my baby, come back." To see his innocence and his pure love for that little girl not only makes me happy but at times like that it breaks my heart. I want to explain to him what's happening but he can't understand.
After awhile, he eventually fell asleep, as they were out quite late. But the next morning he was so pleased to see her. Such a tender moment for such a big hulking kid like him.

Movie Parrot

There is nothing like when L. repeats something he's heard from a movie in public, when no one else knows what he is talking about. For instance, my husband and I took the family along with my husband's brother out to dinner the other night. As we sat in the crowded restaurant L. says, rather loudly, "Shut up and eat your garbage!" Overhearing that little remark may have made others wonder what kind of a mother would say such a thing to her son, for surely he learned if from someone. It was actually complements of Ratatouille, the Disney movie. He also likes to say, "BUGS!! BUGS!!" when he eats, thanks to an episode Buzz Lightyear of Star Command, another of Disney's finest. I'm sure that the proprietors of the establishment we are eating at appreciate the fact that he is yelling bugs for everyone to hear.

Then there's always the, "You'll never take me again." Don't know what that's from, but it's fun to explain that I'm not kidnapping him, he is actually my son. From Jumanji he got the phrase, "I'm never talking to you again!" which he generally uses in the heat of battle. Lately he's been on a Robin Hood kick. He uses a towel to fan whatever is cooking for dinner at the time and he says, "You're burning the grub, Sunshine." At least I can laugh at that one. His capacity to recall lines from any and every movie he's ever seen is amazing. He's like a little movie parrot, ready to repeat anything that might be offensive, rebellious, or down right funny. It is a constant source of amusement for us.

Some of our other favorites:

"You're breaking ranks, Major... or should I say traitor!" Toy Story 2
"For heaven sakes, let him go. Let him go!" Robin Hood
"Can't you stay?" Series of Unfortunate Events (He says this as he's pushing someone out the door)
"Listen here, pussy cat." Tom and Jerry
"I've had it with you and your emotional constipation!" Tarzan

The Haircut

L. has always hated haircuts with a passion. I think it must be a sensory thing. The clippers make that buzzing sound and it really bothers him. His brother H. is much the same. It has been a real struggle to keep them properly groomed because we put the haircuts off until it is absolutely necessary. Lately, and I say this with a great deal of gratitude in my heart, they have both been much better about it.
So it was quite a surprise to me when L. said he wanted a haircut. But then he specified that he wanted a "Buzz Lightyear" haircut. Who knows what the heck Buzz Lightyear's hair looks like? I mean he's always wearing that helmet of his. I thought maybe L. had heard the term "buzz cut" and thought it meant Buzz Lightyear. Anyhow, not one to argue with the kid when he wants something I want for him, I took him to get his haircut. He made it through about halfway, and then began to fidget and get annoyed.
He says "All done now!" and he wants up. With much persuading he managed stay in the seat until she was finished. Then he tells me that he wants a Buzz Lightyear and Lenny. It was then that I understood that he wanted me to go buy him a Buzz Lightyear in exchange for getting his haircut, because apparently that's what his father got him the last time he had to get his haircut. Let me tell you something, it is totally worth bribery if he does something he detests so very much without throwing a royal tantrum. I was more than willing to oblige him.

Home Lunch vs. School Lunch

I generally pack home lunch for my kids. Just your average PB&J, chips, fruit or veggie, and a juice. I like to mix it up with a slice of homemade bannana bread, freshly baked brownies, you know that sort of thing, to make myself feel like a decent mom every now and then. Lunches are especially good if I am doing penance for something. Anyway, the other day L. was throwing a monster of a fit because he didn't want to take his lunch. I finally slipped it into his backpack without him noticing and he got on the bus without any further disturbance.
When I picked him up from school that afternoon, the teacher tells me that for some reason he just wouldn't leave that lunch alone. They stuck it in the basket with all of the other home lunches and went about there business. But every time they turned around his lunch had some how landed in the trashcan. They would fish it out, stick it back in the basket, only to find it within the confines of the trashcan yet again just a short while later. For some reason, he just didn't want that lunch. The teacher commented on how sneaky and covert he was about the whole thing, waiting until the coast was clear and then quickly tossing it, no one the wiser until they noticed that it was missing again.
Why was he pitching his lunch into the trashcan all day long? L. simply wanted the chicken sandwich that they were having for school lunch that day. He ended up crying out, "Chicken, please!" They have chicken sandwiches there every day so the next day, I wisely did not pack home lunch. I let him eat school lunch. Now how will I console myself when I want to feel like I'm a good mom?

Another One Off To School

Monday was L.'s first day of school. He was against it for the first part of the morning. I tried to tell him the bus was coming and that he would see his teacher. He tried to resist, and then, just like that, he decided he wanted to go and went out to wait at the corner as if the start of our morning were a distant memory. When he was at school they asked him to draw a picture of what he had done this summer. He drew a few pictures of some animals, and then wrote http://www.hooglezoo.org/ at the top of his page.
Every now and again he surprises me. He will hardly put words together, and only appears to drift from day to day without any recollection of what he did an hour ago, and then he comes up with a doozy that really takes you off guard. Like the time we went to the zoo and the alligator jumped out of the water and snapped a plastic ball between his massive jaws. It frightened the whole family, but especially L. Since then he refuses to go into the reptile house. Every once in a while he'll say, "The alligator bit the ball." Which goes to show you, he does remember things from yesterday, last week, and last month.
For the past three days he has gone to school without any problems at all. That is heaven.

School Starts

As I have said before, I have two children that fall on the spectrum. Well, this week my younger son H. started school again. He is now in first grade, completely main streamed and doing pretty well for a kid who didn't speak until he was four. Two years later and I am amazed by his progress. I count it as a miracle.
He still has his quirks to be sure but he is so smart. The big problem is this - he doesn't quite understand how recess works. You hear the bell, you go out and play for awhile, you hear the bell, and you go back in. He gets the going out part, it's the coming back in that seems to be his problem. Last year when he was in kindergarten he would leave the kindergarten play ground and go play on the big toys. Often times they would be searching for him, only to find him on the big kids play ground. Now that he is in the first grade and allowed to play on the big kid play ground he just doesn't come back in.
Yesterday, my husband tells him all morning, "When you hear the bell you need to come in from recess." He says it enough times that H. begins to repeat it with him. Later on that day his teacher was in the office and I asked if he had come back in when the bell rang. She smiled and shook her head no. At least she is extremely understanding about it, and seems to take it all in stride. Apparently, he also was insulted by her snacks. She offered him pretzels and he scowled at her and asked her what was up with that. (He doesn't like pretzels.)
It's quite honestly like having a little Kramer from Seinfeld on our hands. He makes some pretty outrageous faces, he jerks and acts shocked over the littlest things, he lets you know when he doesn't like something, even if it's socially taboo, and he's kinda spacey. But oh how we laugh.

My Photos Keep Disappearing

I don't know why. It makes no sense to me. But then it must make some sort of sense to him. L. will not leave my framed family photos alone. I have them neatly adorning the top of my piano with a lovely vase of flowers. I go in, they are there, arranged artfully along the top ledge. I leave the room and come back and they are nowhere to be found. He keeps hiding them in different locations too, to throw me off the trail.
Just why do those photos bug him so badly I'll never know. Every time I find them and go to put them back, he protests. "Put it back!" he says. One of his weird, quirky habits like stuffing toys in any hole he can find. It use to disturb me when he took his Winnie the Pooh and slammed his head shut in the oven. Until we discovered he was just re-enacting the cartoon where Pooh gets stuck in Rabbit's hole.
It didn't end there. At school, a few years ago, he found a whole in the wall where the door knob had banged one too many times. He shoved all sorts of things in there. His aid Adrienne thought it was so funny when they finally patched it up. She said that when they demolish that building years from now, they will discover in the rubble all of those toys he stuffed in there. Maybe they'll be collectors items then?

The Terrible Incident of the Boy at the Zoo

As I have mentioned before, our family frequents the zoo on a very regular basis. It is one of the few things that we can do as a family. We have gone so far as to invest in the annual pass, and go winter, spring, summer, or fall. On Saturday we decided to go, so we packed the family up and drove the half an hour to get there.

L. was really off. I realized to late that we had neglected to give him his medication. That's something we don't forget very often, because it tends to have disastrous consequences. The further we progressed through the park, the worse he got. We made it to the carousel, which he normally enjoys. But the second they started the ride up, he tried to bale. I mean he was whining and saying he wanted off, and kept trying to stand up, which of course I wouldn't let him do. I threatened him with leaving if he didn't straighten up, and he didn't.

Once we got off of the carousel, I told my husband that we should head back to the van, that I had told L. if he didn't shape up we couldn't stay. That's when the real fireworks began. We tried to leave the zoo and he had a complete break down. L. tried to bite, pinch, scratch, and mortally wound my husband. He was screaming and crying and fighting us. There we were with four children, one of which is the size of an adult and temper tantruming, half way to the car, with no idea how we were going to get him out of there.

It is very difficult having a child like L. You love him very much, you want the best for him. He is your child, your flesh and blood. While it was very embarrassing to have him behave that way in public, the worst part is the judgement past upon you by total strangers. Everyone stopped what they were doing and just stared. For that moment in time I understood how the animals must feel, in their cages, being gawked at by all of those people. At some point someone called security. They must have thought we were either harming him or kidnapping him. We had to follow through on our threat, so we just continued to try and get him out of there.

The man wearing the red shirt with SECURITY boldly printed on it at least kept some well meaning individuals from approaching us. He was able to help my husband get our son to the parking lot where I had pulled the van up to the curb. To be honest I am completely surprised we didn't make the evening news. It was quite a disturbance. By the time it was over my husband and I were completely drained. I wondered too, how it had affected the other children. I guess you win some and you loose some. But boy it hurts to loose.

The next day my husband 'climbed back on the horse' so to speak and took L. back by himself to the zoo, to show L. that if he behaved he could stay at the zoo. The biggest surprise of all was that he got L. to ride one of the animals on the carousel that moves up and down. To this date he had only ridden on the stationary ones. I could have fallen over from shock when he showed me the picture of our son, grinning broadly as he sat upon the lion.

Michael Savage Speaks Out Against Autism

The newest flake to become an expert on autism, Michael Savage, shock jock, that makes his money disparaging others. Not such a stretch that he felt compelled to slander mentally handicapped children who can not speak for themselves. Savage recently shared his thoughts on autism on a broadcast that aired July 16th, claiming that children with autism were "frauds", and that their parents were perpetuaters of the lie.
Somehow Michael Savage has found the answer to the question that all of us as parents with children who suffer from this disability have so earnestly sought after. He knows what autism is, what causes it, as he disclosed on his show last week. "I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot." From the mouth of Michael Savage. All I needed to do was berate, ridicule, and yell at my son and he would have been normal. No pill, no diet, no therapy required. So simple, how did I not see it?
And why do I want my son to have autism so badly? Well, for the money of course. Mr. Savage believes that parents who claim their children have autism somehow benefit from it. It's "a fraud, a racket"... "the illness du jour". After waiting for two years to get government assistance for my son's medical bills, I have been told that this is the year. This is the year that I might receive help for the medication that must be purchased every month, for the dental bills that are piling up, for the many needs of a boy who is suffering from autism. This for a child who we cannot get insurance for because he suffers from a 'pre-existing condition'. All this time I have been banking on the dough rolling in, willing to put up with a son who is ostracized for his behaviors, forgoing public appearances, allowing my family to become dysfunctional, and I haven't seen a dime. I would like to file a formal complaint because, apparently all of these other people who have children with autism are getting their financial gain.
Well, Michael Savage, for saying something so completely insensitive, so socially taboo, so completely foolish, I'm wondering if you've ever considered being tested for autism? If you loose your job, perhaps the government could support you.

The Band Aid

Several months ago, L. skinned his nose when he fell from the front porch steps and biffed it on the concrete driveway. He has a pretty high pain tolerance, which has at times been a good thing, at other times a real problem. The thing is when he skinned his nose he insisted on wearing a band aid. Not to inconspicuous right there on his face. My husband and I attempted to put it across the tip of his nose, but he didn't want it that way. He wanted it front and center. The band aid was vertical right straight down the length of his nose.

Try explaining this to curious onlookers in public. It didn't end there. Whenever we tried to take it off he would freak out. We had to sneak in at night, while he was asleep, and remove it because it began to make a sore on his forehead where the adhesive from the band aid was beginning to pull at his skin. It finally somehow healed on its own. Band aids are the bane of my existence. I find them everywhere, stuck to the hard wood floors, stuck in the carpet, stuck on blankets, stuck in hair. Any time there is the slightest hint of a boo boo it requires a band aid. We have tried to hide them to no avail. Much like the scissors they just seem to be found, no matter where you tuck them away.

New Controversy

Here's a new controversial study they would like to do on children with autism. They say that they would like to detoxify children with autism, buy removing metals from their systems. Why is it a controversy? Because there is no proof that is is mercury that is causing autism, and because it could be potentially harmful with the side affects. They are horrified at the thought that children would be used in the study.
I hate to break it to you, but children with autism are nothing more than lab rats. It's been this way for years. There are no proven treatments for autism and so they try and address the symptoms with medication that is not for their autism but for the problems that come along with it. For instance, after several years of trying to deal with my son with out medication, his aggressions became concerning enough that we caved. He is now on a medication for schizophrenia. It works in helping to subdue his violence and so we are forced to use it. There are also medications for hyperactivity that have been beneficial to children with autism. How did they discover these medications were useful? THEY TESTED THEM OUT. I'm not particularly thrilled at the prospect of testing, but what choice is there?
Part of the problem with autism is the unknown. There isn't enough research and we don't really know for certain what causes it and so we have to try things we haven't tried yet. I'm all for research being done as long as it is not harmful to children. It's sort of a necessary evil. As long as they aren't doing frontal lobotomies, or anything crazy like that, please find something that will help these children. You decided for yourself.
http://www.comcast.net/articles/news-national/20080708/MED.Autism.Research/

The Tricylce

I could not imagine trying to teach my chunky son how to ride a bicycle. As a matter of fact, I don't like to say things are impossible, but I think this would be close to impossible. So I looked into getting him a tricycle. I'm not talking one of those little kiddie ones. That would not do. I'm talking an adult size tricycle. I looked into them and even though they are a little expensive, I think it would be worth it. Not to mention it has a HUGE basket on the back, that you could carry some large size items in. Maybe he would be willing to tote me around in that basket, or at least his baby sister and the cats, Tom and Jerry.
Talk about payback, though. When I was younger, my family and I lived in a very small community called Gaston. Gaston had one gas station, a small market place that sold some basics in an old building, a library the size of my closet, and well, that was basically it. So everyone knew everyone. One of the town locals, someone that everybody waved at when the saw him, was an older gentleman that rode around that little town on his tricycle. Something very similar to what I'm looking to get for my son. I thought it was so funny. There he was peddling the streets of Gaston on this giant tricycle. Mind you, I never made fun of him, just had a little chuckle at his expense when I saw him.
Never laugh, people. It has a way of really biting you in the butt at some future date in time.

Halloween?

L. started extended summer school on Tuesday. I was glad. He gets so bored at home, and a half day of stimulation does him good. Anyway, that morning I made sure he had taken his medication, had breakfast, and his back pack was out. The thing I did not bank on was that he would decide he wanted it to be Halloween. He came downstairs in his caveman costume that I had sewn for him several years ago. A costume, I might add, that he refuse to wear that year. In the mean time he has discovered The Flintstones, and he thinks the caveman costume looks like Fred.
He has the costume on and he says, "Wilma I'm home!" and it sounds just like Fred, I tell you.
Not that I care too much what other people think. At this point I'm beyond redemption, if you know what I mean. So I said to him that we should take the costume off, but he didn't want to.
He told me it was Halloween. I tried to explain that Halloween does not come in July. He continued to believe that it was Halloween. I figured no amount of insisting was going to change his mind, and envisioning the tantrum that would ensue, decided not to push it. When the bus arrived, my little Fred Flintstone climbed on, as happy as a clam and sat down in the seat next to the window, smiling from ear to ear as they pulled away. I can't help but marvel at how simple a thing as a caveman costume can put him on cloud nine. His innocents and joy in living always leaves me in awe.

Meat On My Mind

I found out this evening that one of my children accidentally left the freezer door slightly ajar on Sunday night. AAAAAH! What with the warm weather (or should I say hot), it defrosted quite quickly. A task that I have been meaning to do, but keep putting off. So this evening I spent my time cooking 12 lbs. of chicken, an 8 lb ham, and 6 tubes of sausage. I got chicken breasts, taco flavored chicken, BBQ chicken, diced ham, sliced ham, etc., etc. Needless to say, I won't have to cook for a month. In order to save it, I cooked it, and then refroze most of it.
My husband was once a manager at a restaurant. He still has his trusty meat thermometer and he went through all of it, testing the temperature to make sure that it hadn't gotten too warm. All of it was salvageable, which I guess was the silver lining. There were other items that didn't fare too well that had to be gotten rid of so I should count my blessings.
Vegetarians beware. If you are offended by this blog I apologized, but at this point I'm so sick of cooking meat, I'm tempted to join you in your crusade! The funny thing is, my son L., which I have previously mentioned, likes to repeat things from shows was jumping up and down, chanting, "I love to eat," from Elmo's World. At least someone appreciates me.

Having Guests

For some reason, if we chance to have a guest, my son turns into a real jester. He doesn't like any sort of change in his routine. So if someone drops by he goes a little crazy. For instance we had company this afternoon. We offered them the couch. When they went to sit down, he threw himself across the length of it and began to laugh. I guess it could be worse.
When my parents came he tried to get them to leave the whole time they were here. Pretty sad, considering they were visiting from Tennessee. He gives them the boot only minutes after they've arrived. His favorite line is from A Series of Unfortunate Events. He says "Can you stay?" as he's shoving them through the door.
My favorite was when my sister came over one day. He gave her her shoes and said, "Get in your brown car and go." So much for subtle hints. There was no reading between the lines on that one. While it is sometimes rather embarrassing, it is also kind of funny. So we laugh, and say "Isn't he cute", and try and make the best of it. It's not like you can tell him to stop. Or I guess you could but it would do no good.

Speaking Engagement

This past Thursday I was invited by Cedar Fort Publishing to speak about writing my book Keeping Keller and my experiences behind it. To be honest, I wonder what people will find that is interesting about me and my life. But then there are always people who are quite surprised by my antics with my children.
A lot of people want to know what was real and what was fiction. I tell them that the experiences with Keller in the book are pretty much equivalent to my life with L. It's hard to believe but they were all real, perhaps changed slightly to better fit the story, but real.
I had enough material to write two books. Ha ha.
At any rate, it was very kind of Cedar Fort to give me this opportunity because I am a new author and I do have a lot to talk about. For those of you who know me it wasn't hard to fill the hour. I discussed not only my personal history with autism, but I also discussed the latest statistics, symptoms in diagnosing it, and learning to live with it. I had some thoughtful questions and some great comments. All in all I think it went fairly well. So thanks to L. for supplying me with the material for my little talk.

The Zoo

One of the few family outings that we are all able to enjoy is the zoo. Unlike the store, or church, or parties, or social functions, L. is in his element there. He has an obsession with animals. Many children who have autism obsess over something. A friend I met at a book club in Pennsylvania has an adult son that knows everything there is to know about sports. My friend Lala's son loves all things weather. My younger son H. was infatuated with letters when he began to read, now it's musical notes.
This love for animals began when he was very young. He would hardly speak to us, but he would go over and over the names of animals. One evening as my husband and I were watching the Discovery Channel they flashed some footage of an animal we had never seen before. I said to my husband, "What is that thing?" My husband replied that he didn't know. Then, out of nowhere, L. said, "Wombat." And by gosh it was.
We decided that since we could enjoy the zoo as a whole family unit, and L. was generally on his best behavior, we would purchase a season membership, which we use quite frequently. The best days are snow days, rainy days, cool days, because no one else really ventures out and we have the park nearly to ourselves. In accordance with his scheduled route, we fight him to go to the first monkey house, only to rush through the second monkey exhibit, so that we can get to the elephants, his absolute favorite animal of all time. He tells us, "Elephants are the biggest land mammal on the earth." We move on to the Peccaries. ( I just asked my husband 'what those pig things are call at the zoo', and he thought I said 'what are those big tall things made of poo?')
As we navigate throughout the park he proceeds to tell us some snippet about each animal. He's a real walking encyclopedia. The penguins, for instance, "are birds that can't fly, but they can swim". Then we get to the giraffes. "They are the tallest land mammal on the earth". And so on and so forth.
The only time I've seen him ever break his announcer style commentary on the animals was when I took him to see the Gorillas on a day when it was just he and I and his baby sister. After pressing his face to the glass for some time, observing with an intensity that I relish, the Gorilla did something a little disturbing. He ate his own excrement. L. said, "Oh, yuck! Don't eat poop! That's yucky!"
Smart Kid.

The Fear of Loosing Them

Tonight, on our local news, they ran a story about a twenty year old man that is missing. Most people wouldn't think that a missing grown man is something to really worry over. But then this young man has autism. His parents pointed out that although he has a grown man's body he is mentally a seven or eight year old. I have had to explain that to others as well. L. is a very big boy. Now at the age of eight he is over one hundred pounds and reaches my shoulder in height. Mentally he is around three years old. Imagine if you will your three year old getting upset with you, tantruming, getting physical, and then picture them the size of a twelve year old.
What was particularly heartbreaking is the thought of this man's parents and the anguish that I am certain they are going through, worrying over him. It is something that I have feared for a long time now myself. If someone asks my son his name he will not tell them what it is. He can't recite his address for telephone number. I panic when I imagine what might happen to him. The ironic thing about children with autism is that many of them run. They figure out ingenious ways of getting out of their homes, or backyards. For instance, L. figured out how to open the gate on our fence. After a few heart racing, stomach nauseating moments, I found him down the street playing with the neighbor's dog. We put padlocks on the gate to keep him in the backyard. He began to disassemble the fence, and we're talking the tall vinyl fencing that has no slats in it. He would squeeze through the cracks he had managed to make and roam free once again. You really have to save them from themselves sometimes.
I just hope and pray that this couple find their son, that he is returned to them safe and sound, just as I would want my son to be if it were me.

He's Retarded, Do You Know What That Means?

Over the years I have learned to accept the fact that my sons have autism. There were times when it wasn't easy. There are still times when it is not easy. Whenever L. should be making a milestone that the other children his age have hit it hurts me all over again. I think that whenever I see someone staring in public or acting as if he was from a different planet, it also makes me experience the heartache anew.
When L. was just four he was the size of a six year old. I didn't have much of a choice, when I went somewhere I had to take him with me. My husband worked two jobs and there was no switching guard duty, like the way we do it now. He comes home, I run errands, he has to leave, I come home. In this way we have avoided the difficulties of fighting him in public.
On one particular occasion I took my son L. and my two other children to the store with me. It nearly broke my back, but I managed to haul him into the cart because he had a tendency to run away. You can imagine the complications of him not being able to tell anyone his name, age, address, or telephone number if he were to run off and get lost. Although I had good intentions when I confined him to the cart, he was not happy. He began to really throw a fit, to the point that I got some curious glances.
One woman approached and began to good-naturedly scold him. "Now you shouldn't be putting your mother through such antics," she was telling him. "There's no need to behave that way. You need to be a good boy."
I politely explained that it was no use for her try and talk him out of crying. He likely had no idea what she was telling him. I told her that he had autism. She was very kind and seemed sympathetic, saying she understood because she drove the bus for the school system and had a few special needs children that she drove back and forth.
During the duration of our short conversation an elderly man tried to pass my cart. L., in desperation, reached out and grabbed him, trying to use him as leverage to get out of his caged prison. Well, that did not go over so well. The older gentleman became very angry. He began yelling at my little son, chastising him for his bad behavior. At this point the woman, thinking she was coming to my aid, looked at the man and said, "Sir, he is autistic."
I suppose the man had never heard of that term before. He seemed confused. "What?"
She became very indignant. "He's autistic," she tried to explain again.
"What's that?" he wondered.
In a huff she replied, "He's retarded! Do you know what that means?"
Oh, how I wish the floor would have opened up and swallowed me. In all fairness, I knew very little about autism until L. was diagnosed, so it was understandable that not everyone else understood it too. But that day the woman's words struck me to the core. I thought to myself, if adults can't even behave civilly to a child of four years, what will lay ahead on the road before us. Luckily, I've never faced such a scene since, or at least not to that magnitude. I still get the questioning looks, or the people thinking that they are protecting him by asking if everything is alright or if he's my child, to make sure I'm not abusing or kidnapping him when he's in one of his 'vocal' states. But I still can feel the embarrassment of that incident, as if it had happened just yesterday. It has been a lesson to me to not be so judgemental towards others, when I do not know or understand their circumstances or their set of problems. It maybe is just payback for all of the times I condescendingly said to myself, "My child will never act like that!" when witnessing something that was probably similar to my own crying child in the shopping cart that day.

Dinner

We just got back from a restaurant. Shockingly we decided to take the whole family. Usually we avoid making public appearances because quite often it turns into a huge fiasco. We went Italian, always a good idea because spaghetti is one of L.'s favorites. We learned the hard way that not all Italian restaurants serve spaghetti. It wasn't pretty. L. is very motivated by food. He will tell you himself, "I love to eat," which he heard on an Elmo's World. If it is not something he likes or wants, there is not motivation. Funny how that works.
However, this evening was somewhat pleasant. At least until the spaghetti ran out. Everyone else was still eating and L. wanted to leave. He had eaten every last noodle on his plate and when he is done, it's over, he no longer has any desire to sit still. He wants to head for the van. I call it his cocoon. When ever we venture out, he lasts for maybe a half an hour and then he's begging to go sit in the van. I'm not sure if he's over stimulated, or just sick and tired of the company he's in. But to him that van is safety and security.
Last summer when we visited my parents in Tennessee, a solid two days drive, he wanted nothing more than to go home. All week he would cry and beg. There were times when he would just go and sit in the van to be someplace that he was familiar with and felt protection in. I don't know that we'll take a trip like that again for awhile. So if you see us and you don't see him, you can pretty much guess where he is.

Noticing the Differences

The things we noticed about L. were small things, that didn't mean much to us at the time. He did not make very good eye contact. It kind of depended on his mood. Sometimes he would look at you and smile, other times he used his peripheral vision in order to avoid you completely. He did not play with toys, he dumped them. He did not play with people, he played on them, climbing on you as if you were a jungle gym. He did not speak. He was sensitive to certain things, like too much noise, too many people, etc. L. was obsessive about certain programs on television, like Elmo's World. He also didn't do well with change in his schedule.
All of these things didn't seem that abnormal to me at the time. Odd, maybe but not unreasonable. After all he was only two. I just thought that he had his own unique personality.
When all of these things were pointed out to me as being characteristics of autism it was hard to believe. I looked on this beautiful, perfectly formed little boy and it was inconceivable to think that his brain was wired wrong. His programing was in a foreign language. What's worse is I had no idea how to speak that language. I think the hardest thing that I went through during that time was the thought that he would be made fun of, or treated badly. I had seen it before, in school when the kids would pick on the "Special Ed" students. It broke my heart to think that L. was going to be the butt of others jokes, ridiculed, harassed. It is something that still haunts me.

Noticing the Change

Not that we didn't want more children, but it was a complete surprise when we found out that we were pregnant with my third child, and second son. A few bold individuals have asked why we decided to have another child when we knew that L. had autism. We did not know at the time. He wasn't diagnosed until one month before our third arrived. To be honest, we were so swept up in preparations for another baby and buying our first home that problems with L. were put on the back burner. We didn't really think there was anything wrong. He just wasn't talking, that's all, we told ourselves.

When I chanced to express concern everyone assured me that boys talked later than girls. That made sense because my daughter tends to be outspoken and very much a little mother. I gradually came to realize that no matter what others were telling me something was not right with our toddler. He went from being a wide eyed, smiling little child to a somber and often reclusive boy. He still liked to be cuddled. He still smiled occasionally but in general he was very withdrawn and non communicative.

We first approached our family doctor, who wisely pointed us in the direction of the public school systems Head Start program. After a great deal of working with him and testing him they confirmed to us that he had autism. But first they checked his hearing. I recall talking to my mother on the telephone, telling her that we had taken him in to make sure that he was deaf. She was thrilled that it wasn't that. But I was actually praying that it was. Deaf I could deal with. They could help him if he was hearing impaired. But no. It was Autism. It was a death sentence.

After scouring the Internet and learning that there was no cure, my husband and I felt utter despaired. How do you treat a problem that has no solution? I immediately grew depressed and really went through a period of morning, crying every time I saw children that were his age and what they could do, comparing the stark differences with my son. Any little thing brought me to tears. My husband reacted completely opposite. He insisted that L. would be fine. That he would out grow it. It was his way of coping. Later he too came to understand and admit that our son would never be fine. He would not grow out of it.

Two Steps Forward, Two Steps Back

My friend Abel Koegh, the author of Room for Two, sent me this article, which I will call "two steps forward". http://www.sltrib.com/ci_9525303
Basically, a man named John LeSieur created a computer program to help children with autism navigate the web. I think it's fabulous that people are taking the initiative to create solutions for children with disabilities. With 1 out of every 150 children suffering from autism and still more suffering from intellectual challenges there is a great need for such a program. My husband and I found it interesting because we could really use something like that. Our son sneaks on to the computer and punches in animal names and cartoons in the Google search engine and has gotten some pretty interesting things.
The next article I will call "two steps back". http://www.comcast.net/articles/news-national/20080601/Church.Autistic.Child/
A thirteen year old boy has been ban from worshipping at his church because he has autism and is large for his size. I can understand to a certain extent that his priest has concerns about the liabilities he poses, however, I feel that there should be some options and some compromises for the situation.
I took my younger son, diagnosed with PDDNOS to get his hair cut, explained that he is a difficult one and hates getting his haircut, and I was informed that if he gets upset they may not be able to serve him. Again, I understand that they are worried about getting sued or whatever, but what are my options, if I can't take my son to get a haircut? It's very hard to hear things like that. As a parent of a child or, in my case, children who fall on the spectrum our choices are very limited. While I was very upset that they reserved the right to provide a service for my son because of his disability, I can not imagine being told I am not welcome to worship at Church because of it.
It is reminiscent of a scene in Keeping Keller when supposedly religious and pious people feel that Keller should not be brought to church because he is disruptive. I look at it this way, these children are as innocent as is possible. Therefore, they are closer to God than any of us 'normal' folks. They have more of a right than any of us to be in a house of worship. The way that we treat them is a test to see how Christlike we are. So I say shame on the priest who is attempting to bar this boy and his family from their right to worship.

Baby Euphoria

My son was only a few weeks old when my In-laws came to visit their first grandson. My father-in-law picked him up and began talking to him, cooing and smiling. The baby looked him in the eyes and gave him a grin like I've never seen before, as if he recognized his grandpa. We all commented on how most babies don't smile like that. Everyone always claims that if a baby smiles it is gas. This most certainly was not gas. He was smiling down to his toes.
As he grew, his body became more stout, more solid. Friends and family would bend down to pick him up and grunt in surprise at just how sturdy his frame was. The only odd thing that I noticed about my perfect child was his eating habits. He refused baby food, so I began making my own. He ate pretty much anything that I gave him, as long as it was homemade, in stark contrast to the spaghetti, pizza, or chicken he will eat now. We are currently working on broadening his horizons.
Every cute thing he did, was nothing but perfection to his father and I. We had two healthy children, and we felt like the luckiest people in the world. Looking back, I wonder now if there was something I didn't see. Something I was overlooking out of ignorance or just because I didn't want to see it. But everything seemed to be going well. He rolled over when he should have, he crawled when he should have, he walked when he should have, and he even began to speak, saying apple, Elmo, Mama, Daddy. At some point he just stopped speaking. At some point that I can't even really recall his words went away. And he slipped into what they call Regressive Autism, and he was lost for a time.

The Birth of a Dream

Two weeks overdue, as uncomfortable as humanly possible, I felt like a walking time bomb. My son was due at the end of September and here it was the beginning of October with no baby and no end in sight. That summer was sweltering in Des Moines, Iowa, with record breaking temperatures that I had somehow managed to endure. My husband and I had a small daughter and were eagerly looking forward to adding a little boy to our growing family. The exhilaration we felt as we looked at the ultrasound and saw the physical proof of that baby boy lives with me still.
We had a name, we had the baby clothes washed and folded and put away in his chest of drawers, the crib was assembled, generously bathed in blue bedding, everything was there but our son. My poor husband had taken me to the hospital three times with hard contractions just minutes apart. I would labor throughout the night and then be sent home the next morning. Until I finally reached the two week overdue mark and the doctors felt that they had allowed me to suffer enough and broke my water, I was tortured with a barrage of contractions on a daily frequency.
When he was born the cord was wrapped tightly around his neck, his tiny face an unnatural purple. But then he cried and they laid him on my chest. He was so sturdy, with a cap of thick black hair, perfectly parted. I gazed at his soft round face and couldn't hold back the dreams of him playing ball with his father, going to college, meeting a girl and getting married, giving me grand babies, it was all there - the grand dreams a mother contemplates.
Indulge me for a moment while I brag just a little. He was the most beautiful baby. And I wasn't the only one who thought so. My nurse spread the word and all of the other nurses filed in to see the boy wonder. And what a good baby. He had an easy and quiet temprament, smiled readily, and was fond of cuddling. Yes, that was the birth of a dream.