I remember the day I took Booga into testing for Kindergarten. It was a huge step for me because I didn't think he would ever go to regular school and I was encouraged by a pre-school special needs teacher of his to get him into our local school district. I believe he was six or seven.
At that time however, our school district didn't have the means or the patience or in fact as I later found out, the knowledge or tolerance for a child with special needs like Booga.
The sad part about this was that I had maintained this really good relationship with the teachers at my children's school. I volunteered to teach a version of art there because there were no other art classes at the school.
A lot of the teachers I considered friends as well as my children's teachers.
I found out later I was stupid and naïve.
At this particular time in my life, things were in an uproar and they had no clue about what I was going through. They didn't venture to even talk to me about my home life. They knew about Booga, they knew I had a child with special needs, but none of them were "that kind of teacher."
Why should they care?
I later learned that as a rule in this place, teachers were pretty much kept under the thumb of the larger community of certain parents….Plus they, as a public school, didn't want to invest in that training. They flat out told me they didn't.
Anything that wasn't so-called "normal" for them set them on their heels.
Hence the reason the special needs teachers at Booga's pre-school wanted him to go to his own school district…They wanted to somehow force this particular school district into the 1990's and make them provide education for special needs students.
The elementary schools principle told me that Booga wasn't ready for school.
I told him he knew his ABC's and how to count to ten; he knew where his nose was and where his knees were. He needed help though because of his special needs and they fought with me….And I told the principle, "He is ready for Kindergarten."
It wasn't till after threats of litigation and murmurings of lawsuits that they reluctantly let him into school.
So we prepared to have him start school, in the exaggerated one room schoolhouse where my other two children would later graduate.
The kindergarten teacher (and I realize this wasn't her fault…She was probably told to do this from the superintendent at the time) told me that she was preparing a letter to parents of the other kindergarten students telling them that an autistic child was going to be joining them at school.
It was one of the first times in a long time, that I realized that he was different from other children and that people would see him as different.
This just broke my heart. I knew he was different but, I didn't want him to feel like he was different. I wanted him to be treated like his brother and sister- the way he was treated at home.
I began to cry.
I cried for the first time in a very long time after his diagnosis, I began to cry for my little Booga. I was broken hearted that he would have to endure people too shallow to understand how very special he was or look at him as nothing more than a broken child. His special needs pre-school teacher put her arm around me and said, "I thought you were done crying about this?" And I said, "I thought I was too. But apparently not."
I would never be done crying for him-or because of him.
My husband was furious when I told him. He said, "Would they be sending a letter out if an African American student was coming into the school?" (At the time there were none at this school). "Ask them that!"
Later on I would be told that I didn't need to show up at the school as a volunteer anymore. The principle said it was because I had said some explicative in front of students that I shouldn't have….
The only explicative I ever said in front of students was the words, "That just sucks."
Any other time I could remember using any other kind of explicative in that school was in front of a teacher alone or after school during a parent/teacher meeting or during a tour that involved parents; when I was being a parent and nothing but a parent. Never while I was in the class teaching. And it was always along the lines of "Sucks". It was nothing that these children hadn't heard on television or in their own homes in the presence of their parents.
I'm not stupid. This was done to hurt me and shut me up. It was also done to make me more of an outcast and make me look like a bad person and for the principle of the school to feel vindicated in the process. It was done for spite and vengeance. I know how the hierarchy works and it astonishes me that even after high school the jocks are still trying to make sure that they are top dog.
However, the children were allowed to watch "Armageddon," a movie with Bruce Willis, which had all sorts of cuss words in it, for a pre-Christmas break treat. This to me seemed odd, because I know there are far worse words than "sucks" in that movie and no, they did not use a cleaned up version.
Honestly, since I was going through one of the most horrific ordeals in my life, and since I had the loss of a friend and spent a lot of time setting up appointments for Booga and since he was dealing with his new world- I realized that I would probably have to quit anyway. I couldn't seem to find the time to do it like I did before. I was really happy doing it, however it had become a chore because my time was being so taken up with Booga and Booga related details and family and friends.
In fact, I believe, I was intending to quit the year before, however was asked to keep doing it by either some of the teachers or the school secretary.
This was a catalyst in my life. As soon as the monsoon that was my son settled into a pouring rain, I went back to school for Information Technologies.
Shortly after that, I ended up sending Booga to a better school in a bigger town about twenty minutes away, at the expense of our school district; mostly because they had a better special needs program but also because I no longer wanted any of my children to go to that school…Not with the mentality they were professing by their actions.
I still sent my older children to the public school in our district, because we were too poor to send them to private school. On top of that, they complained that they didn't want to move from their school. They had friends there already, and that was understandable.
However if there had been a Lutheran school in our area…You would have seen me hard pressed not to send them there.
Booga still goes to school twenty minutes away from us; still, our local public school has to cover the cost of his transportation to and from there and they have to provide it for him. He does better there; he always has done better there. I think today that I should've just been like the rest of the cattle and sent him to this school in the first place and avoided all the drama. But then again, I would not have gotten to see my first bit of prejudice first hand and known that it still existed in the ugly detail that it does exist.
I still have a lot of hurt from it. I might always have that I don't know.
But Booga's better off where he is, and I don't have to worry about people looking at him and wondering why he is the way he is…
We were talking yesterday at my parents about the strange other worldliness of children with special needs….I told my nieces that sometimes you have a “Twilight Zone” moment with children with special needs because they open their mouths and say something or do something you aren’t expecting and suddenly your hearing, in your head, the theme from “The Twilight Zone….”
Example:
Almost as drawn into one anothers vision by something no one else can see, a young man walks up to Booga in a grocery store today. Clearly, this person has a pronounced disability. I can’t really tell what kind of mental disability, but I can tell by his gait and by his language that he is mentally disabled. He comes up to Booga and says, “Hello.” The two boys extend their hands and shake, just like they were old friends who are meeting at a baseball game… Booga says, “Hello…Do you go to the same school I do?” “Yes.” “Alright then.” “It was nice to see you.” “I will see you later.”
It was a brief exchange. Later during dinner, Booga would tell me the name of the boy… I don’t know all his classmates because they come and go…
However, it was an exchange that I would have never thought to see take place. Not from where we started; not from a child that didn’t even call me “Mom.” I never thought I would see him acknowledging a classmate with a handshake in a grocery store…Ever.
When the wise men came to visit the baby Jesus with his mother Mary, it is said in the bible that when they set their gifts down and left that Mary pondered all these things in her heart…
My niece told me it was good to cry, it releases toxins from your system.
I don’t know if that is true but it does sound good doesn’t it?
This morning Booga couldn’t find his sunglasses. And being exasperated I told him we would have to leave without them and expected a long ride of drawn out self-stimulation. And because of that expectation, I began to cry. I didn’t think I could take him freaking out over loosing his sunglasses today….I was just too emotional to deal with it.
My husband has been on the road for a month and a week for his job and I feel blessed that we have the job he has, and I support him in it, I believe in his work, because I believe in the recyclers he sells….He works hard to support us, I believe by the blessings of God he is the best one in his field (don’t look at me funny, he’s my husband and I can think anything I want) and I am sure he is as lonely as I am when he is gone. However, after about the fourth week alone with Booga, the stress starts to become pretty wicked; and my tolerance begins to fade.
I’m not going to kid you and make you believe that I am super mom that is perfect with her autistic son. I am just as flawed as everyone else, maybe more so…I have not always been able to pay attention to my two other children, the way I should have because of Booga. I do occasionally have to walk into the yard to get my head together so that I can go back in the house to deal with him. I sometimes have to have a beer. I sometimes take a Xanax. But I do not, at any time, take both of them together.
I do my best and the best is all I can do.
It’s really all anyone can do.
So, I trust in God and that he will not give me anymore than he and I together can handle. He has promised this and I believe this promise. I believe he will take care of me and that he has a plan, even though we might not see it right now.
While we were in the car, strangely enough, Booga didn’t go off and self-stimulate at all….He stared at me; he stared at me crying in the car, driving down the road and then reached into the door and handed me a napkin.
When he came home tonight, he asked me if I was better.
I was better to a certain extent. I can’t say that I am 100% better.
It shocked me that he asked that…And that he was concerned about me because usually my emotions don’t affect him; he just keeps on being autistic.
Sometimes though he surprises me, and I see the person sitting beside me instead of the condition of that person.
On June 25, 2009 Booga and I were watching a biography of, guess who? Yes, Chris Farley…He was in The Coneheads. So of course Booga is obsessed with him. And so, Booga, being the channeler that he is, saw that Eddie Murphy was coming up next and since Eddie Murphy is uber cool, Booga decided that it would be great to watch that biography too. So I let him. I continued doing laundry and working on other things while Eddie Murphy was on Biography. It was a two hour long biography, that ran right through the evening news, which I tape on our DVR because every once in a while I am gone during the evening news and I find it important. The fact that I allowed him to watch something besides the news at dinner was odd; because usually I don’t watch anything that might interfere with that particular part of television. At one point I pulled my Blackberry from my purse and began to check on my messages because I didn’t want to bring up my computer just for email. When I got into my in box there was an email from a friend telling me that Farrah Fawcett had died. In fact I had seen that earlier on the news. This I expected. I had watched her special about her cancer and I cried for her because I know what it’s like to watch someone go through cancer treatments. I’ve watched family members die of cancer. Then someone, it might have been the same friend said, “Michael Jackson too.” What? No no, that’s gotta be a mistake. I frantically pulled up my Blackberry browser and searched it out….Sure enough….Michael Jackson was dead. Wow.
When I was in my early twenties I had gone out and bought the “Thriller” album. I listened to it while I was showering in my parent’s basement and I had taught myself to do a version of the moon walk, so I could impress people I danced with when I was out with my friends…. Michael Jackson was a young man, who despite all the weirdness and odd surgeries, I still appreciated for that special part of my youth that was given to me without hesitation, in my early twenties for a mere few dollars. So the next day, I downloaded the digital version and dug out my record and looked at a lovely young man on the cover who never needed to have had all those surgeries to be beautiful. …And because you can hear my stereo outside in the neighborhood….I played the “Thriller” album very loudly and saw myself in my mind, being twenty and dancing in my bathrobe; my wet hair thrown up into a towel. Thanks dude. May angels sing thee to thy rest.
There are some days when it is not easy to be Booga’s mom.
Autistic people have a tendency to use movies and television to help them understand what the proper response is to something in that is happening in the world.
Booga saw Chris Farley rip off his clothes and start dancing.
And so, he ripped his off.
Booga is not stupid, he’s autistic and knows the difference between right and wrong and in an effort to get away with not showing me what he had done; he took the clothes and put them into plastic bag and tied them up like garbage.
I had gone into his room to check out the dirty clothes situation and found the nearly new ripped shirt and pants.
I confronted him about it and he yelled at me, “IT’S TRUE MOM!” Then he pretended (and it is pretending because he doesn’t look this way when he really is hurt or upset) to cry. I told him to never do it again and I went to the basement to get another pair of shorts.
As punishment, I sat next to him while he ate his lunch, which is something Booga hates.
Then he decided that it would be more tolerable if I hit him rather than have me sitting there next to him reading a magazine.
I told him, “Booga, I don’t hit people.”
He began to cry, “JUST HIT ME!!!”
This is from a movie…I don’t know which one, but I could tell it was a movie line.
I looked at him, “Booga, I don’t hit people and neither do you. Stop crying, this isn’t a movie. This is real life.”
He looked at me with tears brimming in his eyes, he really was sorry for what he had done, but the only way he could deal with this was to channel movie lines. However, I certainly was not going to strike a full grown man so he could channel movie lines and deal with his anger.
I’m sorry, that’s not how I roll.
So he went outside and yelled at the neighborhood, and then I had to go wrangle him inside and make him sit down; and then for a good half hour I had to listen to him channel a movie in my living room that had a scene where someone was put in time out or something similar.
Then he started going on about how he wasn’t a child, that he was nineteen and that the neighbors had been looking at him.
Good heavens! Of course they were looking at him. He was screaming like someone was murdering him.
Sometimes I just want to get in my car and drive away and act like I have no idea who this insane character is who is living with me.
And then I remember how much I love him, what a cute little boy he was, how sweet he can be, and how lonely I would feel without him.
And I take my hands off the top of my head, which is where I placed them so as to restrain my brain from exploding and wipe the tears from my eyes and hope that I can find some solace somewhere, like maybe my office….Writing about Booga’s tantrums.
Booga loves to swim. He would spend the entire day in the water if I let him. And if I could get a covered pool to let him spend the entire day swimming, I would let him spend the entire day swimming. Because he loves to swim…He’s a fish. It doesn’t matter if it’s cold or if it’s raining….Fish don’t care if the water cold. Booga’s gonna swim. That’s my Booga. However, I sometimes forget that we have English/Irish skin and we burn like vampires in the sun…
So Sunday I took Booga to his Aunt’s and let him swim to his Turkish delight. I watched him from their dining room and since it was the first time he’d gotten to go swimming this year, I of course, forgot to bring sunscreen.
Because I am stupid that way sometimes and forget that the sun hates me.
I am white to the point of glowing in the dark. The road commission doesn’t need to have flashing lights on the highway, they just call me to stand there and wave my arms. Santa would probably make me his lead reindeer and drop kick Rudolph simply because I gripe less and use less voltage.
That is how very white I am….Deal with it. Red hair and white skin. The only time I’ve tanned is when I’ve used self-tanning lotion and I have to be careful with that or I look like an Ooompa Loompa. I’ve had spray tans and so forth and the bottom line is…I can’t tan. *Sob* It’s like a woman that can’t eat chocolate…It’s a crying shame, and somewhat unfair.
However, I digress. Booga was swimming and I was visiting with my sister-in-law and he got a burn on his back. Now, I’ve had burns, bad, bad, painful burns that kept me up at night. However this burn didn’t look all that bad. I put some Aloe on it, and called it good. Next morning, it still didn’t look all that bad; in fact it looked pretty good. It looked like the red was already fading. Wow. It’s probably his dad’s alligator skin….Right? So, he went pretty much all day without a shirt because it was really hot and muggy and I didn’t think much of it. So about 10:30 that night I looked at his back and lo there were little blisters on the top of his shoulders. Now, Booga is nineteen so it’s hard to tell if those blisters are blisters or if that is acne or his hairy back being hairy. So I touched one of the spots in question and it broke and the burn fluid dripped down his back…. Needless to say I was instantly sick, I felt horribly guilty for being a hideous mother and rotten caretaker and immediately called my Aunt Sharon who is a nurse and asked her what to do….I mean it’s 10:30 PM, what do I do now? Well she told me it needed ointment (Aloe, burn ointment, etc.) and it needed to be covered with gauze or some kind of bandage…. “Covered? How do I cover this large an area? I mean Booga has a broad back and these little blisters are going all across the top of it. I’m not going to be able to cover that whole thing.” “Well, if you don’t cover it, it could get infected now that one of the blisters has popped…” “Oh holy cats!” So I told her, “Hey, I’m taking him to emergency.” So I told Booga that we were going into the emergency room for his back, and oddly enough, he didn’t care. He got his hat and shoes and got in the car with me and the night was warm and Dave Matthews was playing on my CD player in my car. And it was actually a pleasant drive in, and when I got there the doctor talked to me about the burn like he was discussing the quality of the oatmeal raisin cookies he just had on break. It wasn’t that bad, according to them. Not that bad? Not that bad? Have you met me? Not that bad…. Listen, I am the queen of getting burnt. One time I sat on my parent’s porch, when I was a teenager and deliberately burned my legs while reading a romance novel simply to get some color on them. I ended up sicker than a dog that night, about puking my guts out with heat stroke, but I had some color on those pearly puppies, and I have never, that I can remember, never, blistered…. Perhaps this is God’s will, perhaps he is smiling on me because the ozone layer is so thin…Who knows….But I was unaccustomed to the whole concept of blistering. This was rocking my world. However, I believe Booga was just relishing the whole idea and the novelty of being in the car, driving twenty minutes into town, at what he considered the middle of the night. And after we had picked up his medicated cream and his steroids that they put him on to stop the inflammation, we drove home in the dark at about 1:00 AM.
And it was nice. It was a warm summer night, and I had Dave on the CD player and I was driving my car with the moon roof open and the windows rolled down and I had forgotten how much I enjoyed driving at that time of night when no one else is on the road in the country. It was quiet and calm and I didn’t even mind the deer trying to cross the road, standing there staring at my car like a chance not taken. It was nice. And Booga was intrigued at the idea of driving after midnight. He’d never done this before. I had also forgotten how some of my most favorite memories were of my father coming home from work and mother packing us up in the car and driving with us, all the way from central Michigan to Dresden Ohio where my mother’s extended family lived. It wasn’t the actual stay at my great Uncles farm that captivated me as much as it was the drive at night. The whole looking out the window into the deep, dark, night and seeing the firefly’s roaming around. And we would stop at rest areas and have a late night lunch. It was so cool. I didn’t enjoy visiting with my mother’s family in Dresden as much as I did traveling at night. I also remembered that when I was a young person, in my early twenties and I would go out and dance with my friends and come home in the wee hours of the morning. I enjoyed the night; (and sometimes the very early mornings) and the peace and serenity of driving at a time when everyone else was asleep. And for a moment I really remembered something that I’d forgotten about my youth; and I was sharing it with Booga and he seemed to be enjoying it too. Somehow that seemed sad. That he couldn’t enjoy something like driving at night because of his disability. But perhaps, while dad is out on the road, Booga and I can do some late night driving-just to do it and enjoy the peace and quiet of the warm summer’s night.
Funny how life works out sometimes. Something frightening and hideous happens, however, out of it comes the remnants of a memory and something that is warm and comforting as my mom’s oatmeal raisin cookies. Isn’t that odd? What started out as being scary- ended up being memorable? But isn’t that the way it goes sometimes?
When dealing with an autistic child there are three things to remember….
1)An autistic child does not want to hug you…
So you take hold of them and hug them and hug them even though they want toget away from you and all the time tell them, “I love you, give me a hug.” And show them how to give a hug. Move their hands and arms and show them what a hug is and when they finally give in, and you feel them relax…Let them go…
This is very important. Autistic children would love it if they could be in their own world…You have to bring them into yours….
2)Do not allow people to tell you your child cannot speak. If they say random things then they are listening on some level.
Here is a tough job. If your child says random sentences that don’t make sense,than obviously, they can speak and hear you.
YOU ARE NOT DOING THEM ANY FAVORS BY ALLOWING THEM TO NOT SPEAK OR LETTING THEM HAVE THEIR WAY.
Don’t blame yourself for something that is a roll of the dice. Treat them like any other child and make them learn to speak.
“What do you want?”
Booga points to cereal.
“Cereal?”
He looks at me.
“Say cereal.”
Nothing.
“Okay…When you say ‘cereal’ you’ll get cereal.”
And then….ask again.
“Do you want some cereal?”
Points.
“Say, ‘cereal.’”
Eventually, he said cereal. I didn’t starve him. Trust me; I couldn’t do that if I wanted to do that. I’m too sympathetic. I worked at this for several minutes a day….Eventually after the third time I would get him the cereal. And one day he said ‘cereal’. Thank God.
How I found out that Booga could speak is another story for another day.
3)L@@k at me…
This is important.
My older children say I do this even to them, even to other adults.
Someone who I am talking to (who is looking somewhere else while I am talking to them, which I think rude) will be engaged somewhere else, and I will say loudly “Look at me.” And I point to my eyes. If the child will not look at me, I gently turn their head or I move in the direction of their face and I point to my eyes and I say, “Look at me.”
Once they are looking at me, I tell them what they need to know.
It’s important that they are looking into my eyes or your eyes or anyone else’s eyes that are talking to them or teaching them.
You’re engaging them in a one on one conversation. You’re making them acknowledge your presence and you’re making sure they are listening to you and only you.
And don’t let them kid you. Autistic kids aren’t stupid. They’re Autistic. They are like any other kid and will try to get away with anything they can. Don’t bar yourself from disciplining them. Don’t bar yourself from having dreams within reason. Dreams within reason make it easier for you to deal with it. And the beauty is they may surpass the dreams you have for them with this disability.
As I’ve said before, this child is not going to be miracle cured. You have to let the child die that you dreamed of at their birth, but it doesn’t mean you can’t dream of them doing things like calling you “Mom” and knowing who you are and being able to read and use the phone and do dishes and so forth…
Booga wanted to watch a biography of Chris Farley because he loves the movie “Coneheads.”
This is Booga doing his “Coneheads” impersonation.
Last night I made dinner for Booga and I, and he was sitting with me happily munching along and a commercial came on the television for a heating and cooling company in the area. There’s this little girl trying to turn up the heat (which honestly I don’t buy that she needs to turn up the heat that badly because she’s wearing a sleeveless shirt and why doesn’t she just get a sweater or wear a different shirt if she’s that cold?) Anyway, there’s this slogan of theirs that goes, “Gotta get Goy---!!!” And out of an adult’s mouth. It’s annoying. Out of a little girls mouth…It’s far too precious and I don’t mean that in a good way.
They must be doing okay because the thing is on all the time.
So here’s Booga with his lack of caring anything about heating and cooling and there’s this commercial and it’s playing and the little girl delivers her line and Booga says, in a mocking tone, “Gotta get Goy---!!! Gotta get Goy---!!!....KNOCK IT OFF ALREADY!!!”
I thought that was pretty frickin hilarious. I mean, seriously.... out of the mouths of the autistic….
Have you ever watched Rocky and Bullwinkle? There's a part in the beginning of the credits where Rocky and Bullwinkle are running around like crazy because lightening is trying to strike at them.
That was me last night trying to write the previous post.
Oye.
No excuses suffice to say, I got up this morning and wondered what happened and went into my computer and completely rewrote the whole blessed thing.
When God decided to give Moses to the Hebrews, he had his mother put him in the reeds of the NileRiver to save his life from the Egyptian king. When his mother did this, the Egyptian princess took him out of the water and called him her son.
So, Moses learned all about diplomacy from the Egyptians. After he came back from his exile to the desert (to free the Hebrews) Moses was already accustomed to the Egyptians …He knew their laws…He knew how they reacted to things. So basically God’s plan was to have him know; not only how speak to the Hebrew’s, but to Egyptian’s as well. He would already know how to deal with them and how the court in the pharaoh’s palace worked…And the pharaoh would, most likely, already know him because he was raised in the court of a pharaoh.
God works in mysterious ways.
My cousins for example.
My one cousin was so very profoundly mentally impaired that she could not walk or talk, and had the mind of an infant. I didn’t see her until she died. However, I knew of her. She responded to music, I remember, I remember talk of my aunt and uncle having to travel to see her. However, for all my life, until she died in her late thirties, I only could imagine her face. More the pity. My mother told me that when they had her put in a psychiatric hospital as a child, that my mother and my aunt were so affected by the tour of the hospital, that they came out of it clinging to one another as if they had been through a Halloween House of Horrors.
Even though I never met her face to face, the sharing of that knowledge of their experience was so raw and powerful, that I vowed that Booga would never be institutionalized, not if I could help it.
My other cousin was born with a debilitating anomaly that she dealt with, with amazing courage and humor. She defied all odds by doing things like running, dancing and having children. She put to shame the doctors that said she might not live but a tiny march of months, by becoming a beautiful, intelligent woman and by avoiding the fate of other’s born with the same deformity.
I believe she did this through her faith which, though others might not realize is actually quite strong.
I say this because people and especially children, are cruel and did not make her life easy by any means. She was teased and ridiculed for something that she could do nothing about. She was victimized for being born with something that could have as easily happened to anyone in the world; for something that was as chosen as the color of her skin.
All these things I believe, these things, and the loss of my baby sister at birth, prepared me for my son.
I was eighteen going on nineteen in 1981….
I sat in a guidance counselor’s office at college after taking a career aptitude test. I waited as his eyes scoped over results and finally he looked up at me, he asked, “How would you feel about being a teacher of children with special needs?”
And like Moses faced with God asking him to go up against the Egyptians, I said, “I don’t think I would have enough patience to do that.”
And like Jonah….God had me spat out by the fish of fate, on to the shores of Autism.
You know part of the reason I wrote about Human Services in such a way in my previous entry was because it's floors me that:
A)I'm his guardian and that's on his records and yet, that doesn't seem to count.
It blows me away that even though he said who he was and I could access his account, well, what if he said "No.?" What would I do? Autistic people
sometimes live on the edge of unbridled rage.
What if he got a wild hair up his butt and decided he didn't want me touching anything of his today….Not today, nope, I'm not doing this.... but thanks for playing?
B)….And who knows, I might be some devious member of his family trying to take advantage of him….How do they know who I am? You're asking an autistic person to give you an answer and you're lucky they didn't start talking to you about cheese or something.
And generally, most nineteen year old men can shave their faces without much assistance.
However, we are talking about Booga.
Who is going through a phase when he doesn't want help for anything; not shaving, not putting things away, not pouring a drink, or putting on a coat, doing dishes, cutting lettuce…etc.
Nothing.
When you do attempt to render assistance he has a tendency to become irate and yell at you, "I can do it!" and the ever present, "I can do it myself!"
Which would be fine if it weren't for the fact that everyone needs a little help now and then; sometimes it's better to accept the help than to sit there and wallow in your inability- just for the sake of pride.
So one night, not to long ago, he decided he needed to have what he calls, "A cut and shave."
Which I most often will allow him to do on his own, with me peeking in on him (when he doesn't go off and do it behind my back; again with the whole, "I can do it myself") because he does a pretty good job of it; at least, that was until it wafted through his mind that extraneous hair under his wrist watch needed to go…
I guess it was because it was being pulled by the elastic watch band...And it does make sense now doesn't it?
Now occasionally he cuts himself, which is why he needs constant supervision at home. This particular night, he cut his arm when he was trying to shave and came out to me, with his arm in a towel and said in a very shaky voice….
"Mom, I need a band-aid."
You can't know the terrorized look I gave him.
I pictured an ambulance and some late night frantic phone calls to his father, brother and sister.
It wasn't that bad though, just a knick.
I got him a band-aid and tried to help him put it on but it was the same, "I can do it!!!" thing we go through every time I try to help him with anything.
This was exacerbated quite honestly, by the red liquid dripping out the cut in his flesh.
Various threats ensued, such as, no television, no more pop, no going to the movies and so forth.
Have you ever tried to get a band-aid on your arm by yourself? It's darned near impossible.
Have you ever tried to explain that to an autistic person? Darned near as impossible.
So, we got it covered and he spent a good portion of the night in his room, self-stimulating and yelling parts of movies that were loud and violent and fit the profile of the feelings he was having at that time.
He knows when he's done wrong…However; he doesn't know the last four digits of his social security number. In fact, he doesn't know what a social security number is….
I was attempting to straighten up a matter with Booga's services one day and the girl on the other end said, "I need to speak to (Booga) to get his permission for you to access his account.
And I'm thinking…"The frack you say."
"Listen, Booga is a nineteen year old Autistic man."
"I will still need his permission."
"Well, I'm his guardian."
"Well, I still need his permission."
"Well, good luck with that."
So I decided to contact them again when Booga was home so it could be clear to them that he was incomprehensible by ordinary humans who had not been trained in Booga-speak.
He told them his name and address, but when it got to his social security number he looked at me for prompts.
Then suddenly that was all they needed.
When I got on the phone they attempted to blow me off by telling me about the mistake in the system and how it could gotten around.
WHO ARE YOU? AND WHY ARE YOU WORKING FOR MY GOVERNMENT?
There have been moments when Booga has looked at me doing or saying something as if to say, "Um, look crazy lady, I can manage this by myself."
It's like that Steve Martin stand up moment when he says, "I DON'T NEED YOU! I CAN DO THIS ACT ALONE! I OFTEN DO!"
Am I embarrassed by what Booga sometimes does? That would be a resounding yes. Sometimes.
Sometimes he breaks wind in public place and it's like you're downwind of a sewage plant. Birds drop from the sky, dropping dead while in flight, old women faint while passing by, dogs come running from odd places …Yes…It is that bad.
Sometimes his observations are very very true though and inappropriate at the same time.
One time he walked into the post office and the clerk behind the counter had a beard that was salt and pepper to match his hair and Booga said, as loud as he could, "Mom, what is wrong with old man?"
I said, "That's not an old man."
And without missing a beat the clerk next to him said, "Yes he is…."
Not only was I embarrassed, I was a feared for my life….I mean it was a postal clerk, in a post office, who knows what level of carnage my sons comment might propel this old man into…
And, also, I use this post office a lot and I mail a ginormous amount of junk. So, I don't want my mail going to Korea or Abu dabi ....If you catch my drift...
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 Heimlichmaneuver 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 lostabout 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.
