Don't watch me!

"Don't watch me."

Oh I can't stand those words coming out of my son's mouth.

I gave birth to you; I can watch you any time I want to watch you.

There are times when that darker part of my sense of humor wants to do the "watch-watch-watch, and when they act like they're going to look at you look away."

At this point in his life, even though it is for his own good, he doesn't want me to watch him do anything. Like, say, load and unload the dishwasher. Even though loading and unloading the dishwasher is something he needs to be watched whilst doing. Booga has a tendency to over fill the sink with water, because for some reason, even though you needn't wash or even rinse the dishes. He doesn't want me to watch him vacuum the floor even though he could very well suck up the kitchen rug into the vacuum or his father's sneaker laces and cause havoc and pain for me because it will indeed burn up the belt. He doesn't want me to watch him eat, even though it is important because he has gagged and I need to be there to Heimlich maneuver him out of choking. He doesn't want me to watch him cook chicken nuggets in the microwave although left to his own accord Booga would eat them raw….

Yeah, I'm a big mean mom.

Onward…

It's an odd thing to see your own personality in someone who people don't see as having a personality but as being generically predisposed to having his labels personality. Booga doesn't do amazing sums in his head…Nor does he know what the date was when the hurricanes hit in Louisiana in 2005, nor what day it was….Booga does remember the people that starred in The Day the Earth Stood Still, both versions…I believe…He does remember who was in E.T.The Extraterrestrial. He can tell you who starred in Sleepless in Seattle, and he can discern Dave Matthews Band from any other band because mother will listen to them to distraction.

I owe them my sanity.

The true trick with Booga has been to accept him as he is, and not try to fix him, like so many other parents of Autistic children try to do.

We've never treated him any differently than our other kids. He has chores, he gets punished for his transgressions against the house and the cats and the housecats. He is not allowed to scream, he is not allowed to stay up all night. He is not left to his own devices. He has to pay for his own ice cream if he decides it is something he wants to do, and he has to pay for his own movies and movie tickets if he decides he must see something in the theater.

He and I trade off sometimes. Sometimes I buy tickets and he buys "Gee dunk" (which is covert terms for junk food).

He goes to church and is expected to participate. He is a confirmed member of the Lutheran Church (Wisconsin Synod). He is a communicant. He is expected to give an offering in church. He signs the communion register himself, obsessively.

We do know his limits and there are some.

He does not understand sarcasm. He cannot be expected to understand complex directions like:

Go downstairs and in the bedroom under the blue dresser in the box marked clothes is a pair of striped pants, bring those pants up here and put them in the dirty clothes hamper in your bedroom.

No, that's not going to work.

It's more like this:

Go downstairs and I will come down in a minute and help you find your blue striped pants.

He doesn't handle change well yet.

He doesn't handle change in money well yet either. I usually follow him into stores for that sort of thing. He does know how much money four quarters makes and the difference in dollar bills, five dollar bills and a ten and a twenty.

He can tell time, pretty well and usually knows what the date is because I gave him a calendar for Christmas a year ago and another this year and his class and his teacher go over the date apparently every day.

But it's within reason. I know people who are like, "Hey I think he can handle this…."

And I say to them, "Um, no…"

Just listen to me, I know this kid, and when I say he can't handle this, or that he is going to end up calling you at 3:00AM if you give him your number, that is probably what is going to happen.

And trust me; it only takes one exhaustive day, and him getting it in his head that at

3:00 AM it's the perfect time to call you, that you'll get it through your thick head.

It's exhausting- these people. Those seeming, "know-it-alls," they are completely irritating.

These people who are all about doing this and that for Autistic children to make them normal children again….Like they are going to find a pill to make this child normal.

Shut up.

Just shut up, shut up, shut up, shut up, shut up.

There is no pill to cure autism.

Again, THERE IS NO PILL TO CURE AUTISM.

Sure there might be a therapy that will help them calm down enough to help them learn this and that and there might be some vitamin that helps them sleep through the night and learn a little better in school…But be aware, the autistic reality is this; if your child is really really autistic, there is not one thing you or I can do about it. It's in God's merciful hands and he will allow them to grow as much as they can. Bottom line people, GOD HAS GIVEN YOU THIS JOB-DEAL WITH IT!

Allow that imagined child you were given at birth to die and accept this wonderful, amazing, life-changing gift he has given you. Maybe its vaccinations, who knows; maybe it's pollution, maybe it's our lifestyles, however, I believe autism has been around longer than the vaccinations, longer than pollution, longer than we know. I'm so sick of the blame game.

You, for some reason, have been chosen by God to deal with this child. He sees potential in you that even you yourself don't see….DEAL WITH WHAT GOD HAS GIVEN YOU!

Accept it and the sooner you do, the better off you will be.

I have seen these people who believe, I'm sure, that their child is cured. And I'm sure they are closing their eyes to some really autistic behaviors their child has and will always have because-THERE IS NO CURE FOR AUTISM.

It's a roll of the dice people.

Here's what Autism was: Autism at one time was your weird Uncle Charles and that girl in the library that knows where all the books were but talked to no one. It was that person that stared out the window at you while you walked home from school and was really weird but no one knew why.

It's been around a lot longer than we care to admit, but now we have a name for it and

I think parents of this age, will go to great lengths to believe that their child is normal. It's easier to blame something else than to say, "My child is flawed."

And why are you saying this child is flawed?

How do you know this is a flaw?

Because he doesn't act like everyone else?

Who wants that?

What kind of world would it be if we were all the same?

Worse yet is the parent that dissolves into unbelief and sorrow and gives up and gives away the opportunity to have this child in their life, simply because it's hard. But that's what is great about your Autistic child….If it was easy than everyone would be able to do this… It's the hardest job, harder than just raising these so called "normal children" but the rewards are ten times better. And your other children, your nieces and nephews and your extended family, your true friends and your in-laws, are going to be better people, more open minded people, more understanding people for it…..BE BRAVE! Take this amazing thing on and grab it by the horns! That imagined child handed to you at birth is gone. Grieve for them. Be sorry for your loss and then….Move on through it.

Come to grips with this reality.

This child is as unique as anyone else. And if you allow this child to be him or herself, you will conquer something that will allow you to focus on what you can do to help this child into the world.

Once you have done this, you can work on something that is going to be even more difficult.

Making this child's life as normal as possible.

No different than anyone else's.

Not "special" as people would call them.

Making it a normal life for them- their normal- not yours.

Get over trying to create an "average" child.

Then life will become easier for you and them.

Granted, this might not work with a severely impaired child, however, here's a thought; why can't it to some extent?

Get to that point.….

I'm not a doctor, I'm a mom.

And who do we look to when we ask some of life's more pressing questions?

We look to our mom's.

Who would know this better than anyone else? - A parent who has been through it.

However, take the first step. Go somewhere and grieve and get over it. Put head phones on and cry while you're doing the dishes. Cry in your room at night. Cry in the back yard.

Grieve and get over and move on.

I stood on the deck and listened to Dave Matthews Band-Under the Table and Dreaming, in the cold, in the night, and looked to God in the sky and asked why? I drank my coffee out of my cobalt blue, star sprinkled mug. I listened to the words from Typical Situation and began to cry and swear my child would not be put into an institution, and Dave would sing, "Why are you different? Why are you that way? If you don't get in line, we'll lock you away…"and I would vow not to let people put him away…I would make them see what I saw in him and I would defeat this…And it would take a toll on my personal life, friendships (the ones I thought were strong and would never fall apart) people would reveal their true selves to me through their prejudice….And in the end… This is what God has given me.

This is what God has given you. Deal with it.

Nothing can be gained by wallowing in the anger of the autism in this child.

Do not allow it to run your life. Or it will do its job and ruin it for you.

Don't make me cry.

I digress.

Here is Autism, From a Booga perspective:

You're in a car going down an expressway and the windows are open and the air is coursing through the car, and your sister and brother are in the back seat talking to your mom and the radio is playing. The cars are passing and the sunlight is coming through the glass and the clouds are moving and someone else that just went by has a really loud stereo. There is no way to filter it out and your not understanding why your mom is telling you to stop screaming because today your loosing your mind because YOU HAVE NO FILTERS!!!!! THIS IS ALL COMING AT YOU AT THE SAME TIME!!!

GGAHHHH!!!!!

Autism is also:

There's a movie going through your head that you have to rewind and watch over and over and over again so that you know how to respond to a simple question like, "Would you like a glass of water?" You're a player in this movie of your life and you don't know how to respond to regular people because you've spent your life trying to filter everything and make sense of just riding in the car with your family.

So you pick up on television shows, or movies, or people at school having a conversation and memorizing that conversation because otherwise you are not going to be able to communicate. And you've found that movies are a great way to live, and cope with everyday life.

Movies move along at an acceptable rate for an autistic person. It's one on one and the answers are spelled out. At least the ones Booga likes are mostly spelled out for him.

It's frustrating to not be able to communicate effectively.

Have you ever had to explain something to someone and use an example of a person that both of you know and forget the name of that person you want to cite? And struggle to make the other person remember who that person is and try to make them give you the unremembered name of the person that both of you know, however who's name escapes you?

That's what it's like to have a communication deficit.

That is the problem with Autism, 24-7-365.

For Booga an example would look like this:

Perhaps he learned a phrase from watching The Simpson's and so, under the file "The Simpson's" that is how he replies to something he's done wrong.

"Du-Oh!" and then a string of words from The Simpson's, that to me and you is simply gibberish.

It's similar to what he thinks is his sense of humor but his sense of humor much more complex than that, he just doesn't realize it.

He likes The Three Stooges, so he references them when he's trying to make me laugh.

But he laughs at Monty Python in all the appropriate places so what does that mean?

Monty Python is a hard concept for some "so-called normal" people to understand.

And yes he does feel. He feels just like you feel things. He feels things.

He gets his feelings hurt; he gets angry and feels love. He cries because his heart is broken by defeat. He cries because he misses people sometimes. He feels bad when I cry. He understands loss and death. He has fears, like the hospital and doctors.

And that fear came from years of going through drug therapy that was completely necessary but made him a zombie most of the day.

We had him on Clonidine and tofranil, Mellaril, and at one point he was on Ritalin. He was on Dexedrine and Paxil and Zoloft... And Mellaril was one of those drugs that seemed to be paired up with like tofranil or Clonidine...And so forth... then one time I committed the ultimate medical mutiny and took him off Mellaril and he went from being a very overweight child to being a normal sized kid.

And I didn't care what the doctors said, because it was for his good that I committed this mutiny.

We now see Booga for who he is, this is Booga unfiltered...Better off for not being on the meds. Sometimes we have our days but doesn't everyone...

And what were these things for?

Sleep. Yea, I know, right?

Booga spent most of his young child hood not sleeping ever. I was exhausted always. My son and daughter were terrorized by a child that would come into their room and turn on the light and wake them up. My daughter slept beneath her bed for a long time.

I knew from the time our son was 18 months old that something was wrong with him, but what I wasn't sure of was what was wrong with him?

Booga didn't speak, he made some gurgles like babies do, but he didn't speak. And Booga didn't look at you unless you made him look at you. He continually banged his head against the wall next to his bed and he didn't sleep well. He would spend hours each night, riding his spring horse until he would fall asleep.

One time, in fact, early in the morning, he actually fell off the spring horse on to the metal framing (I had fallen asleep waiting for him to get sleepy) and gotten pretty badly bruised up. And of course, his pre-school teachers questioned me like a prisoner of war. But I couldn't blame them. Some people might, after nights and nights of sleepless frustration, abuse a child like Booga. Fortunately I wasn't that kind of person.

Over three or four years I had built up a callus to what other people might believe was abnormal behavior. Other people might have been slowly going crazy staying up all night dealing with a child like this, but I couldn't afford to go crazy.

I would listen intently for the springs to quiet, try to watch and catch the moment he was falling asleep and I would grab him off the horse and put him in bed or I would find him crawling on to the couch and would stay up and watch him till I knew he was asleep then put him to bed. There was no rocking Booga; he couldn't handle the contact with another person that long. No wonder he had only fallen asleep in his swing as a baby. He needed that motion, but not the human contact. He would on occasion wake up in the middle of the night and crawl back on the horse after I went to bed and in the morning I would find him asleep on the couch or on the floor.

This was life with Booga.

I can't remember after eighteen months rocking this child. Just hugging him was a test of wills.

When I started looking into what was wrong with him, I had remembered some things I had heard about Autism. I wondered if I my assumption was correct, that my son was Autistic. His pre-school teachers urged me and urged me to get him diagnosed. (This was annoying, because I spent so much time trying to make myself believe that maybe I was wrong and he was fine). I had taken him to have his hearing checked to see if he was deaf. That sort of thing ran in my family and it was a logical move. But finally, I was told it wasn't his hearing; something else was going on here. I was confused and I spent a lot of time alone trying to research my son's symptoms and spent hours at the library, going through books and magazines and went from neurologist after neurologist, until one finally sent us to "Rivendell" (a psychiatric hospital for children).

The first time we arrived at "Rivendell", my husband and I were told we could leave Booga if we wanted and I was horrified and flatly refused. I couldn't do that to him. I wouldn't allow that to happen to him. Booga wouldn't have understood why I was leaving him with these strange people.

My cousin had been institutionalized and the thought of Booga being institutionalized stabbed at my heart. I realize that my cousin was very, very disabled, to the point where she had to be bedridden. I knew it was painful for my aunt and uncle and they had come from a different time when having a disabled child was a mark of shame and something to be hidden. But this wasn't going to happen to him, not my child. So here we were; Booga, my husband and of course, myself, and we were pulling into "Rivendell".

We would get our five year old son's final diagnosis. Today would change our lives.

We got Booga out of the car and we all walked into the lobby.

Over time, Booga had gone through a battery of testing. The psychologists and psychiatrist kept testing this and that, and every time we came in there was a new test. This whole process was three months long. Apparently in the 90's it was difficult to diagnose Autism, in fact, I had been told, that doctors didn't like to diagnose children with Autism.

'Why?' I thought, 'Was it so hard to diagnose? Was it because they didn't know for sure what Autism was exactly? Or was it the complexities of the disorder itself?' Autism apparently was a rare disorder then.

Every visit, I kept waiting for them to say, "Booga's fine. Take him home, he'll talk next week." But they just smiled and had me make the next appointment.

I also wondered if they'd say, "He's fine, however, you're crazy….Let's keep you here."

So again, this morning, we packed our five year old up and put him in the car and drove the hour and a half and we were here again waiting patiently for the receptionist to click the doors and tell us to go into the treatment area.

I paced nervously back and forth, Booga ran from window to door to television set.

I looked at my husband and he looked pale and unsure.

My husband had maintained a stance that there was nothing wrong with Booga. He couldn't believe anything else; he hadn't been able to bring himself to believe that something might be wrong with one of his children; he'd managed to avoid this realization for the past three years.

When he had been given his moments of clarity, he tried to tuck them away and ignore them. But then sometimes they were so entirely in his face, he couldn't look away. Like the time he was driving the truck, and our oldest son, who was eight, asked if he was going to become like Booga.

"No. There is no way," he told him.

However, the idea that an eight year old would be asking such a question was so hard because it meant that he had thought about it and that he was scared.

It had rocked his world.

I was scared too, I was always scared.

Every time something was noticed by a pre-school teacher that I didn't see before. Every time he did something, like line up all the toys with the same make, the same shape, or sit motionless staring into nothingness for too long. Every time I would have to hide things like dry detergent for fear it would get eaten or deal with him screaming uncontrollably in church for no apparent reason. Those times I would kind of lose my mind, so to speak, because normal children didn't do this kind of stuff. Those times I would stand at the kitchen sink and just try to wrap my head around it.

I had, beyond anything, wanted my children to be normal children; healthy, normal children. I'd been so wrapped up in the idea of raising my so called "normal" children and had been so hard on them to be "normal ," that I was lost about what to do with Booga; Booga who put that idea of raising "normal kids" on its ear. What the heck was I doing here? I had no idea how to raise a disabled child.

The receptionist in the lobby finally waved at us, the doors clicked and opened, the doctors called us in, and we sat still and we waited.

One doctor had a tie on that was covered with hearts and I knew it was Valentines Day, but the holiday was lost on me. To be completely honest, I thought it was inappropriate.

And it wasn't. It was just our circumstances.

They said all the regulation jargon and they all held the professional papers; and when they were leading up to the final diagnosis I sat there on pins and needles waiting for them to spit it out. It was like waiting for the doctor to give you a shot or something that you didn't really want, but this is what you came here for, so you wanted to get it over with.

I expected a drum roll or something before they announced their findings, but they yammered on about the test that they had performed and what the results had been and I listened without really hearing. Instead I heard myself yelling in my head, "Cut to the chase!"

Then they said it: Booga was not NOS (Not Otherwise Specified), he was not Asperger's Disorder, he was not completely ADHD, although there were aspects of it.

He had PICA (which was eating non-food items like laundry soap, which he did from time to time) and he was classically Autistic.

My husband began to sob openly. That was a difficult thing for me to handle. He so much wanted it not to be true, and me? Well, I had spent hours sobbing, in fact, by the time Booga would officially enter school, I would have cried so much that it would take an act of sheer and utter stupidity on another person's thoughtless part to make me cry about Booga. I had allowed myself to cry and cry and I cried so much, my grandmother would have said, "It's a wonder you can pee at all."

That's how much I cried.

I had wailed and mourned and cried and anguished, until the tears didn't matter anymore.

Here in this moment, right now, I had to make it okay for my husband.

I tried my best to comfort him. But the tears ran through, and poured out like rain, it came with muffled tales of his own fears, sobbing stories of his own hopes for Booga. This was his moment of sad realization, that his imagined son would be gone forever. Here was the time that he would mourn the loss of his son, as real as death, and as bitter as the grave. Had he been looking for sympathy from these men, there was none to be found, and they looked at him like they had heard this a million times, and they just sat and waited for him to get himself together.

Eventually he straightened himself up, as much as he could, and we finished the meeting. My heart was broken for him, because I knew what he was going through. Praise the Lord; I'd already been through this, and was able to keep my composure.

We signed papers and took our diagnosis and went to his parents' car. We put Booga in the back seat and strapped him into his place.

As much as this was a relief to have a name to what was going on, I saw in my mind the next twenty to forty years of this person's life and it terrified me.

How was I going to do this, heck, I couldn't even do basic math most of the time.

I wasn't normal myself and I had problems and insecurities, how was I suppose to raise a functional human being from this diagnosis? How was it going to affect my other two children? My daughter was already sleeping underneath her bed because Booga came in and turned on the light in her room, in the middle of the night.

I pictured myself in our barn with glass containers all around me and a large pole and in my mind I was whirling around holding the pole, like it was a sword, spinning and crashing into all those jars and glasses and vases. I felt like I had failed and I wondered how my parents and brothers would react.

Oh no, my family. They were all so brilliant and so educated and I had always been the one that was struggling with school, skipping class and being wrong. The one child that had been mentally disabled in our family had been institutionalized. Oh crap, I couldn't imagine they wouldn't love him, but what if they rejected my damaged child? How would I deal with prejudice when it happened, especially if it happened in my own family? Would I know what to say, or how to act? Would I have to cut family members out of my life?

So life went on as usual with a sorted darkness in the air and I went to my parents and that Saturday night I sat at the kitchen table and told my family the diagnosis.

My mother looked like a mirror of myself on Valentines Day.

In her quest to somehow comfort herself as well as her child, she asked me if I believed in miracles. I said I did. I had talked to God a lot of late and more than anything had appealed for his help on matters ranging from helping Booga find words to divine intervention while dealing with potty training.

My sister in law hugged me and asked what I was going to do.

And I heard myself say something that would be a basis for Booga's life.

"I'm going to do what's best for him."

It's been thirteen years since that day.

And what was best for him, was to treat him like any other kid.

Instead of making him "special", we just treated him like a regular child; who was difficult at times, but with Jesus' help and a lot of good teachers, and social workers we managed to stay the course with him and we're still learning….So herein laid my quest.

Won't you come in search of The Holy Grail of Autism sense with me?

I'm not going to kid you, I had psychiatrist that were complete quacks come along and treat him for everything from Autism to schizophrenia...Which, I have no idea where the schizophrenia came from other than the constant referencing of movies which is an autistic thing...Idiots! So be aware of what you are dealing with and educate yourself.

Or at least make the most of every day trying?

.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·.•·.·´¯`·.·•.·:*¨¨*:·..·´¯`·.·•.·:*¨¨*:·..·´¯`·.·•.·:*¨¨*:·.


Groucho Marx - "I was married by a judge. I should have asked for a jury."