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.