Booga went to homecoming this week. But it wasn't the only thing he did.
He was very handsome; he wore a brown suit with a striped tie and his dad's good shoes and with his ever present sunglasses he looked like someone from "Men In Black".
Only it was "Men in Brown".
He was asked by a group of kids that felt like it was an opportunity to give the intellectually disabled kids in their school the opportunity to go to homecoming…Just like everyone else.
Booga actually had a great time even though he told his teacher (who happened to be chaperone that night) that he needed to go home at 9:30 sharp. Like his coach would turn into a pumpkin or something like that.
He told us, as he stumbled into the car, that he asked a girl to dance and that they danced, however, he didn't kiss her.
According to his sister, this is one of his goals in life…To kiss a girl.
The other thing Booga did this week that totally blew me away, was go and connect his computer to the internet all by himself.
This I wasn't expecting simply because it's a chore to take the card to the other computer and connect to the internet. But he did it. And the internet didn't suffer from it; although he hit YouTube pretty hard.
My husband and I went to the store and picked up a few things and left Boog on his own. When we came back I looked in my office and the internet card was gone.
I opened Boogs bedroom door and there he was on YouTube. Watching movie clips. Apparently his father has seen him "googling" stuff as well. I said to him, "Hey, what's going on here?
He apologized profuselyand I said, "I don't care if you get on the internet. But the next time you want to get on you need to tell mom first and then she can get the card for you and you can connect it." Simply becauseBooga goes about getting the card-and anything else for that matter- like he's killing snakes.
Interesting week.
It proves to be more so with the fact that I have to deal with thedisaster they call DHS about some things that are unresolved about Boog.
Booga has been sick, and I don't mean, kind of sick, I mean really sick.
He had Pneumonia and we weren't sure where this came from because it's the summer and it's odd to get Pneumonia this time of year.
Anyway, he started work this summer at a place that trains people with special needs to work out in the public and I kind of wonder if wasn't something someone had at work?
However, it doesn't matter, he was dog sick.
He was so sick that when the third of July came around, Booga was made to watch the fireworks from our front porch, which is no mean feat because it requires that you stand at a certain part of the deck and crane your neck. We also watched the fireworks on television, but it hardly matched watching them in person.
We were planning on taking him to the fireworks on the fourth, however, he wasn't getting better, and so we took him to the hospital.
We spent the day with him watching him get pumped full of antibiotics and liquids because he was dehydrated. Again we watched televised fireworks and Booga struggled to breathe.
The next day he felt better and was on an inhaler that he used quite a bit but it would take at least two weeks for him to fully recover.
In that time, the cold that initially gave him Pneumonia, gave me the flu. And I was dog sick.
It was so hot that I didn't know half the time if I was sweating because I was hot or if I was sweating because I had a temperature.
We just purchased one of those handy dandy thermometers that you stick in your ear and tells you your temperature in one second. It was difficult for me to figure out at first because I'm stupid. But eventually I figured out how it worked. We had to get a new one because I went to use the digital thermometer that my husband and I had bought when our other children were small, on Booga when he was sick, and it had died. So for a couple days while Booga was sick I used the old fashioned method of hand-to-forehead and the tell tale sign of just walking up to Boog and having the heat just radiate from him.
I put it in my ear and the thing went off and I took it out and it said 99*.
"Great!"
My husband and I can't be sick. In our family the world stops if one of us is sick. So you can walk around our house and in various places are antibiotic soap and GermX hand sanitizer that gets used for everything from washing hands quickly to disinfecting the keyboard and phone to antiseptic on minor scratches.
So Boog and I were sick together. At one point when I was driving one day, I would cough-then he would cough….I would cough-then he would cough….And it went on like that. Then one time he coughed and I coughed and so forth and so on….
At one point I didn't cough at the allotted time and Boog looked over at me and said, "It's your turn."
During our convalescence I taped "Time Bandits" which is a Terry Gilliam film and since Booga loves Monty Python, and "Time Bandits" is "Pythonesque" he loved it. At one point in the week Booga looked at me and said, "Mom it baffles me."
No word on what baffles him, something baffled him, however, I was not privy to what it was exactly.
Could be the fact that we were both sick in the middle of summer?
We had a big family party for my niece and nephew who graduated. (Same niece that has been raised by wolves.) I planned an impromptu eightieth birthday party for my mother with all of us kids involved and Booga started work this week for the first time ever, ever.
(That tenuous silver strand of umbilical is beginning to become even more tenuous and thin and it was only one thing in a myriad of things that were going to happen over the next week).
In my life right now, these things such as my mother's eightieth birthday party, the twin's open house and Booga ending school for the summer, going to work all in the span of four days are all kind of mind bogglingly difficult for me. I don't like chaos and there's a lot of chaos for everyone involved in all these things and a lot more chaos to the third power with someone that is taking care of a person with Autism.
And so it all went sort of like this:
On Monday I made five pans of brownies, four for the open house and one for Booga to nosh on because he loves brownies.
On Tuesday, I scanned and printed out several pictures of my niece and nephew.
Then on Wednesday pulled several empty bottles out of the closet and out of the box of bottles in my office and set them in the sink to soak the labels off of them, then spent the afternoon and part of the evening painting Modge Podge on them and strapping strips of tissue paper to them, then slapping the pictures on them and Modge Podging over that. Thursday I went shopping for flowers to put in the bottles while Booga went to art class. This was seemingly the busiest Wal-Mart that God ever created because the lines were the longest lines for check out that I had ever seen. It took me a whole half an hour to check out.
Booga got out of school on Friday which was a half day. Shortly afterward I packed up four pans of brownies two with icing and headed to the other side of town to help my sister in law make food for the party. While there, I and a friend of hers went to the hall accompanied by niece and nephew and decorated with the bottles and flowers and some wind catchers with little graduation caps in colors on them.
Then I came home and wrote down everything I needed to take with me to the open house and needed to get done that day on the chalk board in the kitchen and again, made two more bottles with pictures and bought more flowers.
All the time that this was going on I was Face Booking my family and arranging a birthday party for my mom who was turning eighty the next week. And this happened to be so cumbersome because no one wanted to do it the day before Fathers day. (Too be honest the last thing I wanted to do on the Sunday after the open house was go to a party and provide food and host- right now I was helping my sister in law host the twins open house and then of course I had Booga getting out of school and going to work for the first time and riding the public transportation for the first time in his adult life…So…) Finally I decided that it was too much work to try and get everyone in agreement on a date after her birthday so I said, "Let's just do it this Sunday." The end. Everyone except my oldest brother was fine with that (and that was because he had already made plans for that day).
I felt like I was going to pass out.
On top of that I get this feeling as though sometimes, things that others think are easy and they can just breeze by with are the very things that lock me up.
Like cooking in my kitchen which is unreasonably small.
And Heaven forefend that Booga and I are in the kitchen together at the same time or that I watch him at any activity. I have to stop what I am doing and walk out and wait for him to complete his task or he'll stand there and wait and watch me like a confused statue. Or try to explain to him why the big roaster is upstairs and in the kitchen when it isn't Christmas or Thanksgiving. There are times when I wish he were more aware so I didn't have to constantly explain.
SO finally the day came for the open house and I stumbled half-awake out of bed, out to the barn, nearly stepped on a cat, threw open the freezer door and got three pans of Macaroni and Cheese out that I got at the restaurant supply store. I stumbled back into the house, opened the roaster and plopped the three frozen pans of Mac and Cheese into it and took a deep breath and set it to cook. That worked out well except for the fact that I couldn't lift the thing and Boog had to carry it out to the back of the car. We were at the hall most of the day. The next day I went to the store and picked up two huge pans of fried chicken for my moms party and ran screaming into town in my car to pick up a birthday cake and get to my parents house by one o'clock in the afternoon.
She was happy and I got rid of a lot of left over salad from the twins party.
I really "cake and chickened" myself out. I think I can do without birthday/graduation/wedding cake for at least a month or so and I'm all done with chicken for about a week now. When Booga and I came home on Sunday and I took off my bra and went out and sat down for a while I caught my breath and he and I went over the use of bus passes about three times. And I think he understood. And he ended up loving work. Apparently they have vending machines that are all important to Boog.
This is the end of his first work week. My week is still on going. There is no rest for the wicked until possibly Friday and then I have my father his father's day present to take to him and another family get together and I must take a German chocolate cake to on Sunday.
I find that being that busy is not exactly my idea of fun. Not at all. I would rather take on one problem at a time, do it well, and go on from there.
There are times when you look at your kids and go, “Where in the heck did you learn that?”
Recently I have been doing this with Booga.
For one thing he has learned to use the computer in my office, which is something he hasn’t shown an interest in since he came out to the living room one day and announced to me that he wished for his computer to thrown in the fire pit.
Some days we all feel that way Boog.
However, he decided a little over a week ago that having a computer would be really cool. Because there is this thing called YouTube that he could go on and watch clips from movies and stuff about movies and movies about movies….Oh the list goes on and on….
SO suddenly he wants a computer.
I have no problem with this. Other than the fact that I don’t think that Booga understands the term “virus” or the idea of not clicking on everything that pops up- that is unless someone else has taught him that.
And there is something Booga has learned that like Yoda on Star Wars- I would like him to “unlearn what he has learned” and that is HOW TO LIE. This is something that I would like him to do.
Boog, as I have stated before, gets a certain amount of money for every chore he does.
He has learned that he doesn’t have to tell us how much money he has. He can say he only has a five dollar bill and not five ones….That way he doesn’t have to count change back to us.
It makes his life a little easier and is disturbing for me who always proud of the fact that I had this child that was so innocent that he didn’t know how to lie.
Obviously along the line somewhere, he’s been polluted by the world in some respect.
I can’t be with him always. I have taught him things I thought were important. I have now showed him how upset someone gets when you lie. Hopefully, because Booga hates it when you’re upset with him, this will show him that lying is wrong. If not we will reiterate it a few times so he can understand it. Or make a big deal about it at the dinner table and tell him that Jesus doesn’t like it.
That usually does the trick.
The Lord doesn’t like it.
Thank God he loves God.
All I have to tell him about something he is doing that is wrong or about someway he is acting that is wrong is that God wouldn’t like it and it puts a lot into perspective for Boog, because…..It’s God. The last person he wants mad at him. God’s the last person I want angry at me for that matter or anyone else in my family.
Have you read The Old Testament…Yeah; God is pretty scary when he’s mad.
So we have this to reprogram in him.
Thanks world.
Something I found out about myself is that I don’t like anything to be out of the ordinary. I would like it if I could keep all my schedules as they always have been. The same television shows with even better twists and turns and things like that, no one leaving no one coming no one doing anything that isn’t the same as they did yesterday. With the exception of the fact that I wish that my husband was here a lot more- but making the same money as he always does.
I would like us to stay the same age. I would like Booga to stay the same age as he is right now and I would like everything to go on just as it has since I became adjusted to this whole course of routine of the here and now.
Don’t make me change this routine again…that’s too painful. Part of my children becoming adults is that whole changing thing and every time they’ve changed it’s been painful and hard. Every time they’ve left and every time the cycle of them changing from my child to an individual adult in the world has been as painful as a dull rusty knife.
When my children were small I couldn’t wait until they were older and less of a concern, and when they got to be older and less of a concern I missed the little ones they were and wished I could go back there just so I could do over my mistakes and cherish them a little more as the babies they were.
When I dream of my children they are little children. In my dreams they are little ones. Maybe this is because they were little for so long? Or maybe because I don’t want to let go of that special sparkling time in their lives and how much better it could have been if they had been little children in this time in mine and my husbands life when we are more centered and more settled? But then who is to say we would have even had children if this had been the case or if I would have even had the same children? Because I would want my children that I have now- I’ve never wanted anyone else’s children. Even before birth I felt a kinship with my children that far surpassed any relationship with the exception of my mother and my husband.
And here it is, the precipice of my last child becoming an adult. He’s speeding towards it like a locomotive. He’s pulling away from my hand with little concern about my feelings in the whole matter. Because that’s the way kids are. They can’t care how you feel about their own adulthood, because if they do, well, then they are too worried about how you’ll feel about them no longer being your baby.
Why is it that we want to hold that hand just a bit longer?
Is it because we are concerned about how our child will fare in the world or is it this selfish need for the world to go on as it has for the past few months or years? Is this our need for sameness-for our routine not to change? What is it?
It’s painful and like movies where the hero or heroine is having a hard time just before things turn and all turn out fine. I always want to quickly move through their conflict in their lives and get to the happy ending where you think that this is the way it is going to go on from now on. You know, everyone settled and happy and the world spinning and babies laughing and birds singing and the sun shining and your children happily playing at your feet. That sort of scenario, you know it, it’s gone on forever. However, growing happens and things do change. This is part of life and if it stopped then we really couldn’t call ourselves alive…We’d just be existing- just existing in the world. Wouldn’t we? Not actually what you could call living.
No one prepares you for Grown up things. Like the fact that your child with special needs will someday be attracted to girls. Or the fact that they will go through puberty….Slowly and painfully….And that you will have more wonderful and frightening things come about because of that. No one prepares you for it. It’s like you don’t believe it will happen that they will eventually grow up and move on from you. That someday they will start pushing away from you because so much of their lives are about needing you.
Booga came home from school and was pumped about going on a school trip to an island some ways away from home. And he was bouncing like a school kid. I was sure that I had read that they needed sleeping bags and pillows but then it could have been all that prep that went into getting my other kids ready for sleep away camp when they were in school. SO I called his teacher who immediately knew it was me. That is never a good sign. It means you’ve called her way too much. She said hello like she was getting a call from a pesky neighbor who called a lot about her dog barking too much. “Ooo, that’s not a good sign.” I said aloud, “You already knew it was me.” “Well, I have you programmed into my phone.” Another not so great sign… “Oh well, I was just calling to ask if Boog needs a pillow or a sleeping bag?”
About this time Booga had come up behind me and was leaning over me listening to this conversation. He stood like a vulture that would-if need be- grab the phone from me immediately if I said anything that might hinder his sojourn to the island. He was so close in fact that I began laughing at his concern about this….
“What’s funny?” “Boog is standing over me because he’s terrified I’m going to do something so that he can’t go…”
As soon as I got off the phone we completed his packing by making sure he knew how the camera’s worked. I had told his teacher he might need help advancing the film but it would be fun finding out what he thought was interesting. I gave him his money we had saved out for his trip. And he dutifully put it in his wallet. I put his bag next to the door so he wouldn’t forget it and sometime during the evening he picked it up and moved it to his room-because clearly it would be safer there right? Anyone who thinks that would really have to see Boog’s room. It’s “everything in it’s place and everything has a place” but his dad and I are going to have to clean it out this summer when he is spending some respite time with his aunt because it’s the home of the one the worlds oddest pack rats.
So this morning he got up like usual and had his breakfast and coffee…(Coffee- which is something that has just manifested in Booga’s life…..the need to drink a cup of coffee with creamer and Splenda.) He brought his bag out to the dining room and he ate his cereal and drank his juice and put on his shoes like he does every morning after he showers and puts on aftershave and deodorant. He grabbed his other bag and then stopped when he saw the bus pull in the drive way; which he never does. And in a manner of the way his father says goodbye when leaving for a foreign country or a road trip that is going to take him to some distant far off land like-Alabama-where they still serve Coke in glass bottles. He looked at me and said, “Well, I’m going.” Suddenly I realized this was my cue to get all mushy-like when dad leaves. “Okay, be careful. And take lots of pictures and have fun.” “Okay Mom. Bye.” “Bye.”
And with that he took off for his retreat from me. It’s about the time he would be getting home right now. But on the itinerary, they should be in the Butterfly house or back at the hotel or shopping now. I hope he took pictures. I hope he doesn’t give them a hard time at bed time. I hope he’s okay with the pizza and doesn’t get all freaky about it. I hope he gets up when they want him to and I hope he doesn’t fight with anyone.
I started losing family members way before most people should.
I lost my sister at age two.
She and I would have been about 18 months apart and we would have been a force to be recon with I think.
My great grandmother on my mother's side died when I was five. It was the first time I had ever been to a funeral home and seen a person in a casket. It was also the first time I ever saw my great grandmother, or at least could remember seeing her.
I don't remember my great grandfather's on my paternal side's funeral. I think my parents left me in the care of a sitter.
I then lost my maternal grandfather at seven and then my other grandfather at thirteen.
At the age of twenty-five I lost both of my grandmother's and at the age of thirty one of my friends.
I know loss. I do.
All those losses however never prepared me for my children leaving home though.
No one mentioned that it was going to be hard to let them grow up and leave.
When Booga was diagnosed, I became involved with The Autism Society in our area. There hadn't been one and I was one of the people who started it. I remember I was first contact for many people who were in the midst of finding out that their child was Autistic.
One conversation I had with a parent stood out in my mind.
It was a conversation with an elderly woman about her thirty or forty year old son who she was so worried about because she didn't know what they would do with him when they were gone? She was perplexed and honestly I had no answers for her and I think I told her to call mental health and or talk to The Autism Society and ask for options. I tried to be compassionate and understanding but to be honest I was out of my league in terms of being able to be helpful.
The way she had gotten my number was through her husband who had met my husband in the garage my husband was employed in at the time. I don't know how the subject came up but somehow they both related to each other that they each had a son with Autism. It broke my heart I wasn't able to give her clear answers but this was something I was not prepared for.
When I finally was able to hang up the phone (to be honest I think I was making cookies because I remember handling dough while I was talking to her) I couldn't stop thinking about how "that could be me".
Since then the idea of someday having Boog leave us and live elsewhere has morphed. At first it was out of the question. Then my other children were adamant to the fact that he would surely come and live with them (even though I expressed reservations to the fact that future spouses might not want their little Autistic brother living with them. This has proved to be a wrong assumption, as Chewie's wife-to-be is very accepting of their little, special, brother). Now it has congealed into an idea that someday Boog might live in an assisted living home.
The other day I told him that he will be working with a company that hires special needs personal as a part-time job this summer. He looked at me like, "What?" And I explained it would only be three times a week and that he would get paid (weakly) and that he could save that money for something or somewhere he wanted to go.
That seemed okay by him.
His biggest concern was when lunch would be.
That's important in Boogaland.
It's a step to independence. It's a step to pulling away from us as he does all the time when he goes to use the key to help me get in the back door; handling it like he has always done it. It's a step like when he doesn't want me to watch him use the computer that he has just suddenly begun to express interest in since he found a way to play games on it. (This isn't too far from being like his older brother). It's a step like not allowing me to watch him like a hawk when he does chores. He looks at me disgustedly and waves me off to go in the other room. And of course I go, with one ear open to whether or not the water is continually running in the sink or whether he is putting something in the clothes washer (which he is told not to do-at least not yet. Not until he understands the difference between bleach and detergent).
And when time comes for him to separate from me it's probably going to be as heartbreaking if not more as the other two, because Booga will have spent more years at home than the other two spawn.
When Missy left, it was sudden. She graduated from high school and she left and went to another state and got married the same year and I knew- I knew the moment she got married that she was not coming back- and it broke my heart.
I spent hours in her room watching her television and laying on her bed. I sobbed at night for her. When we came home after she got married I cried all the way home. Every few minutes I sobbed and nothing could consol me. I missed her so very much because she and I were so close and I believed that we always would be like that. That she always would be just a short drive away. Not a thousand or more miles.
However, eventually after she established a career path, I knew it was okay.
I had raised a strong woman, like I had always told myself I would do. I had raised an independent woman that would not rely on anyone but herself (although there are times in this life when we have to take the help of other people….I would have to remind her of that sometimes). I finally allowed myself to let her go, although nothing would make me happier to hear than the words, "Mom, I found a job at home and I'm moving back!"
And she would chuckle at that.
When my son Chewie became addicted to computer games and couldn't find a job, it became apparent that we would have to send him somewhere, where there were jobs, and where he could establish himself and somewhere where he could get away from computer games and focus on real life.
We took what money we had saved for a new driveway and heart broken, we sent him to live with his sister and find a life in her city.
It was one of the hardest things I have ever had to do. I was depressed and shattered. I didn't want to talk to anyone, I didn't want to be around people, I wanted the world to stop spinning and smiling and laughing, I felt alone and defeated. I felt ripped apart because my Chewie and I were so very close- and for as much grief as I gave him- he had to know how very much I loved him.
It was odd because when he was moving there were people we were talking to that said they were from the state he was moving to and there were songs that would randomly come on the radio about the place he was moving to, almost like God was sending us little signs that this was what needed to happen.
And as it turned out, this was the best thing for him. It was difficult and hard at first but sometimes you have throw someone into water and make them sink or swim. And he began to tread water after a few difficult and painful months and now seems to be at least dogpaddling into life.
Things finally have begun to be normal again.
Now what of Booga?
I don't know what is going to happen with that? I have a feeling this might be worse. Not only because I have spent my life in pursuit of helping him have a life, but because he will have lived with us so long.
I know that I need him to grow up because every once in a while I think to myself that Boog is kind of a ball and chain, I can do nothing without consideration as to what kind of impact this will make on Boog. I can go nowhere without finding care for Booga. I can't just leave, I can't go back to work (not that anyone would hire me at my age- in my profession) because he takes up so much of my time and I am at his beck and call. So what happens the moment that the umbilical cord is cut with him? What is going to be my reaction to that?
I have had some pretty profound losses, and I think to myself that everything works to the good of those that love God. I wonder how I am going to deal with that and if all these other losses and growths of my adulthood will have prepared me for this eventuality?
I can only pray and hope that it has. We will see and then we will know, I guess.
Have I told you lately that I love you? Well, it’s because honestly I don’t know you so why should I say that? But as a person in God’s world I must tell you that I do. This morning it just came flooding out of my hands on to my keyboard and so there it is. Booga is one of the most fastidiously clean people you will ever meet. He takes a shower everyday and wears his favorite aftershave every morning. For a person with special needs whom you would think you would have to be right on top of to make sure his grooming is up to snuff, this kid, well, is similarly like my brothers in the way that he can’t stand to be anything but impeccable in his appearance.. It is odd. However, praise God for this smallest of favors. If someone has a beard or if their hair is uncombed or they smell bad or they are dirty…Well according to Boog, “You look like dang it!” If he doesn’t like the way something looks, “It looks like dang it!” You don’t feel well, well then, “You feel like dang it!” It’s adorable; this resistance to using any kind of profanity to get his ideas across and on another level it is part of the humor that makes living with the Autism tolerable and in some aspects almost enjoyable. How much less laughter we would have in our lives without our Boog. He can’t stand having a beard-he hates it! We made him grow one, once for a Christmas picture where we had him dress like Santa and hold the cats. It was an adorable picture but he couldn’t wait to shave. He looked a great deal more like his older brother than we ever thought possible. But then again, they are brothers. What a handsome lot of men I have. Now shaving for the most part is something that I have to keep close eyes on because one can never forget the horror of him cutting himself. It was pretty monumentally scary I must say. I will never forget the utter terror in his voice when he, covertly had shaved in the bathroom and came out and said in a frightened, shaky, voice, “Mom, I have bleeding and blood….” I shutter even now to think about it. The really bad part about it (and I hesitate to tell you about it but the really appalling part of Booga’s hygiene routine) is his insistence on being naked when he shaves. Yikes! Yikes in a big way! I’ll never forget wanting to gouge my eyes out for the crime of accidentally walking in on him one time when he was getting in the bath tub. “My eyes! My eyes!” There is nothing more unnerving to a parent than walking in on their grown child naked and shaving in the bathroom. Nothing more heart rendingly difficult than getting that image deleted from your mind than the grown child naked with a face full of shaving cream and sink full of water. And I’ve done it. I’ve walked in on him shaving at the sink, stark naked. GAH!!! Once you have seen it, well; as a friend of mine put it, you cannot “un-see” it. But since he is insistent on shaving naked (???) and since I have to know when it is happening so that at least if something happens I can render assistance immediately; I guess I will keep the door closed and pray that I’ll never have to do so. If something does happen and I hope to The Lord Almighty it never does, then I will have to have years of therapy afterward. However, I “need” to know because Boog simply can’t be left to his own abilities while shaving because of the whole “blood and bleeding” episode. It’s like cooking or washing or loading the dishwasher. Left on his own- bad things happen to good people. Anyway, to continue…. He is a clothes horse. Thankfully, he is a clothes horse with the thought process that a pair of jeans and a nice golf shirt is the height of fashion. A tie and nice pants and a nice shirt for church; Or a t-shirt and pajama bottoms on a day when we aren’t going anywhere. And luckily he isn’t particularly hard to buy for, he likes going to Goodwill, because for one thing, they have cheap movies, for another they have cheap CD’s that he can buy with his small amount of money that he is given. They have jeans that are in pretty good shape and nice golf shirts; sometimes brand new ones with the tags still on them.
People don’t realize the good savings they can get from going into second hand stores. It is very true that one mans junk is another mans treasure. It’s so very true. Recently I read where a University some time from us is now doing a thing where the students can give their used furniture and clothing and so forth that they are going to throw out at the end of the semester, to an organization that will set it up in a hall and let people come in and take whatever they want for free. Apparently the last time they did it the general public cleared them out in less than an hour and left only a single bag of clothing that was taken to Goodwill. I remember my husband and I, as a young couple doing what is commonly called “dumpster diving” when the University began to throw out their students furniture for the end of the year. More than once did I find a piece of furniture or a table or something I could take home and use in my own house. I still have a table that folds down in my office and it was in a dumpster. Amazing what people think is junk. Thank God that someone finally realized that people will take what other’s don’t want and use it. Thank God someone realized that throwing something that is perfectly fine just because it was inconvenient to carry home was a waste! I thank God for the people who take their gently used clothing that they have either no purpose for or have not worn in a year to Goodwill so that I will have something to buy for my Booga. Oh don’t get me wrong, I don’t just buy used clothing for him or myself. One of my favorite hobbies is going through clearance racks at department stores and seeing what kind of good buys I can get on brand new clothes for me, or Boog or for my husband and even for my children, although they generally buy their own clothes now. I rarely buy anything at full cost. Rarely. I do but it has to be something pretty freaking amazing. Even the materials I make into pajamas bottoms and sew into useful items at home I buy on sale generally, unless it’s something pretty spectacular. Live poor- It’s economical. Now don’t sit there and think, well, you live poor, you must dress poorly. No no, my friend, I have good taste. Even though I shunned my mother’s fashion sense as a teenager, I as an adult, hear her voice in my head when I look at clothes. The last thing I want to do if I buy something is come home and put it on and hear from Booga, that I look like dang it! No one wants to look like dang it!
My mother worked in a high end ladies dress store pretty much all her life. She was always up on the latest fashion. She would have liked it if I had taken better interest in how I looked. However, I was not going to be like her. I preferred the quirky, weird, dress styles and the odd outfits I put together. The only thing my mother ever bought me that we truly agreed on was a trench coat…A very nice trench coat and that I wore all through high school.
Me, my trench coat, and my science fiction books under my arm- that was my costume. Weird, quirky, sci-fi nerds…These were my people.
Much to the dismay of my mother and father who were very popular in high school….
My dad was a very brainy jock. My mom was the drama queen, destined for Broadway. My dad, well, he went on to devise different ways to mold plastic into useful, albeit eternal, items. My mother went on to have four children and work in a high-end dress shop pedaling “London Fog” coats, “Ample Togs” and “Melissa Petite” dresses for older well-to-do ladies.
So, it didn’t surprise us at all that when their 60th wedding anniversary came around that there were scads of people at the party…Scads. Of people. And they were in high school again.
Sigh….
People I didn’t know were coming up and talking to me, asking me questions and I would look at them like, “Who are you?” Then suddenly I would recognize them beneath the wrinkled exterior and I would, wide-eyed, look at them and think, “Oh my gosh, I do know you- but your OLD NOW!!!” Quite the shocker.
However, it was nothing compared to when Booga went up to one of them who was apparently still and happily stuck in the 1970’s- wearing a seemingly “Huggie-Bear-From-Starsky-And-Hutch” shirt and asked what the deal was with the long scar under his nearly buttoned-down shirt? He was very polite and told him he’d had open heart surgery and I very quickly made it a point to tell him that he was autistic…Like he would understand that…..
He looked at me like I had just spoken to him in Vietnamese.
I spent a lot of time talking about Autism to people.
For some reason, this is a topic of much interest in the over-seventy crowd. They are somewhat taken aback and curious about this disorder that so many kids are coming up with these days. Which is great I guess…But, you know, it’s not my life. It seems to define me sometimes. Sometimes I would rather not have to talk primarily about it. Sometimes I would like to talk about my photography or my artwork or computers or anything other than Autism.
Sigh again.
Booga ate and drank and danced-carefree and happy.
This particular day, I was the one having a problem with socializing, not Booga. I was uncomfortable all day. It’s not that I don’t like my parent’s friends or anything like that. I am just not real comfortable in crowds of people who are looking to have me entertain them with my witty repartee ….That’s my own little segment of Autism in my own life.
Eventually the crowds thinned and family was all that was left.
It was a big hall.So we were scattered throughout....Which was kind of nice.
My sister in law and I stood in the back towards the end of the party, taking apart centerpieces and we talked about Boog, and about how we felt about his Autism.
I told her that my husband and I had talked about how we wouldn’t change him.
I told her I thought he would be very much like my nephew (who is a music major in college right now) had Boog been an average kid.
“He did ‘Cats’ this year.” I said. “He loves musicals. He’s obsessed with ‘Evita.’”
Things went silent for a moment.
“We’ve talked about what it would be like to look into a crystal ball and see him as an average kid…What that would be like?”
I looked over at him twirling his hands in time to the music.
“I worry,” I said, “That it would break our hearts more to know what he’d be like….”
She looked at me sadly. “Oh…” She said in a sympathetic tone. Then she spoke my name in that way people do when they want to say something to give you comfort but there are no words of comfort to be given.
I smiled at her trying to make it okay for her. In the way I smile when people are searching for words of feeling and finding none…And you can see it…I would have said normally, “its okay, we’re okay with this…We’ve been dealing with this a long, long time.”
But instead I said, “But look at him now,” I nodded toward the dancing figure twirling across the floor… “He’s dancing.”
And I smiled at her again.
Not a care in the world right now, all that mattered was a full stomach, good drinks, cake and coffee, good music, dancing and music…That’s all.
For Booga, that was whirled peace.
There are times I don’t know why I am writing this thing. Sometimes it’s because I think that I have some kind of crazy sick idea that someone out there can benefit from something I’ve said.
Let’s be clear.
For the most part, dealing with Autism is like any other kind of thing that blindsides you on any given day…It comes along and knocks you off your feet. But really, it’s what you do with this knowledge afterward that defines you as a person.
Do you sit and stew?
Do you allow yourself to rage with self-pity?
Do you get angry at your spouse?
Do you get angry with God?
Do you get angry with child?
Do you get angry with yourself?
Well, to be honest, none of those things really can help.
Sitting and stewing, helps no one. Not even you. You can’t rage into self-pity. It doesn’t help.
I remember a quote from a movie that said “….Conflict and hardship can either burn you to a crisp or turn you into Gold.” It’s what you do with it. I don’t remember what movie that was…I think it was a “Tammy” movie. It stuck with me. And it’s probably a good thing.
I like to think I am a better person for what we’ve gone through.
For starters here are some nuggets of wisdom I have learned living with this thing.
You can’t get angry at your spouse. Autism is a roll of the dice. With or without that person in your life you may or may not still have had an autistic child.
God may have given you your child-however, it’s not as a punishment- rather, I like to think of Booga as a gift. More than once I have thought, “What would life be like without Booga?” And the thing is; I don’t know if I would want a life without him in the world. He brings so much to mine.
Would I wish the problems that Autism presents on anyone? No. I know people who would benefit personally from having an autistic person in their lives…But do I wish this on any family. No.
I believe God chooses who gets blessed with the autistic child. Of course there are people, who don’t receive this gift with the optimism or the patience that is required by it. In that case it is given over to other people to be blessed by this child. Sometimes, it’s the simple fact that they are in the world that blesses not just the people around them, but the greater community in the whole.
Does that make sense?
In any case, there is no sense believing that your autistic child is doing the things that they do just to piss you off. They don’t want to be driven to do the things they do…I can’t be angry with Booga. He didn’t do this to himself. In fact I know that if he could make himself an average kid he would. But he has no real choice in the matter. It’s his nature. And it’s not to me to try and change who he is rather it is for me to help him cope with the rest of the world and to help the rest of the world cope with him.
And I am all done being angry with myself. There was nothing in the pregnancy I could have done-according to the doctors (back to the whole-roll-of-the-dice thing).
The biggest part of dealing with Autism is getting to the point where you realize, it’s not your deal, it’s not something to cure. There is no cure for Autism, they will always be autistic. You’ll just frustrate yourself into a tizzy if you think that way. Even these people who say, “I cured my child of autism and you can too!” Are either lying or aren’t seeing the autistic tendencies. They treat the symptoms and not the illness. They have trained their child to react in certain ways. I’ve done that. Booga says please and thank you. But when you get right down to it- and you’re around these so-called-cured- kids- hello, there’s still some Autistic characteristics present that either mom or dad doesn’t notice or doesn’t want to see them. They are fooling themselves; because they couldn’t handle the diagnosis. Maybe they weren’t strong enough or had too much going on in their lives to have this thing blindside them, either way, they are kidding themselves.
Get over it; it’s not the end of the world.
You can treat this child like any other child. Granted it’s going to be a slower process, but it is still the best way to raise a special needs child. Granted it’s going to take them that much longer to grow up. But we as parents can’t put time limits on children. Eighteen was made up by the government to send men to war at a certain age. Eighteen is no magic number. I think of myself at 22 and I was a child; A child marrying and having a child as a child.
I have come to the conclusion that I am probably going to end up putting Booga in a group home or some place where he can monitored. I’ll tell you why: my husband and I need that time when we are older to enjoy our retirement, and Boog needs a place to be when we are no longer able to take care of him. Granted he has a brother and sister, but I can’t count on them to take care of Boog- that would be unfair. And Boog needs some kind of separation as a person in the world. And granted someday he will be able to do a lot of the things that we all do as adults but he still has to be monitored all the time. He will always have a tendency to not use the common sense you and I take for naught. For example; you don’t put a porcelain teapot on the stove to heat. It’s one of those things you have to make tea for separately for and then put in the pot. The pot never sees fire. Or another thing is that you don’t wear long draping sleeves to cook in because they’ll catch fire. He doesn’t get that. You don’t make yourself huge amounts of food for every meal.
If I let Boog he would eat himself sick. And he has before. We’ve walked out of restaurants with Boog and he’s thrown up in the parking lot- because he’ll stuff himself. You have to stop him after your done with your meal and he’s still eating and ask him if he would like a box, and tell him, “You can take it home and have it later.”
It’s one of those things where at least it gives him the ride home to take a breather from eating. I don’t know why he does this? But I think it has something to do with one of the para-pro’s he had in preschool who insisted on taking his food away from him and not giving it back if he got up and left the table for any reason while he was eating.
That’s all a good and fine disciplinary move, but you can also instill bad habits like stuffing themselves with all their food on their plate, because they think that if they leave the table to go to the rest room or get a drink all their food is going to be gone when they come back.
It’s not how I raised my children.
That’s another thing you have to guard against; other people’s ideas of how you are raising this child.
You know how this child works; how they think and react and their limitations. If you don’t think this is the right thing for your kid…Say so. And if they insist on it, then make them lock themselves into responsibility if it is wrong. I have learned this from so many years of having people (who think they know Boog ) tell me what he is and isn’t capable of and allowing myself to be duped into trying to get him to do these absurd things that are beyond his capabilities. Sometimes with embarrassing consequences, so I have learned to lock them into the responsibility of ownership if things go wrong. That way I don’t have to mop up the results and it all rests in their lap. You can do this by writing down what you think will happen and sending it in with them and having the person send back a note either disagreeing or agreeing. That is why Boog has a notebook aside from his planner that he takes with him everyday. This thing is set up so that his teacher has to write in it everyday about what’s going on. I want documentation. Not only does it serve the purpose of locking them into responsibility, but it gets me out of going to those useless parent/teacher conferences, where they tell you the same thing they told you three months ago.
It does not take the place of an IEP.
An IEP is a totally different liter of kittens.
So you see, these are all things I’ve learned over time. You, I am sure, can understand why sometimes when I am writing I wonder if anyone is listening; if I am writing this for no good reason other than my own outlet or is by my writing these things and sending it out into the ether world of the internet is a useful thing?
I hope so.
God gave me this for a reason and I need to take this and not hide it under a bushel. I wish to let this light shine, if not for everyone, maybe for just one person other out there.
Use this wisely and for your benefit.
Learn from me.
Booga has a tendency to go “overkill” on his chores.
He will take clothes down to the laundry room, unload the dryer, load the dryer (he's not allowed to do anything else in the laundry room...It could be bad) and load the dishwasher, (again, restraints are in place with the dishes also, because it could be a wet soapy mess-lest we forget the dishwasher episode)and then take the trash out of the bathroom and the kitchen (and that's if he's desperate for a dollar more...He hates it)… all in the name of the almighty buck. He loves money.
He loves to have me go to Goodwill and shop because he can look through the old movies and see if there is anything he would like to have. He is one of the few people in the world that actually still own a VCR.
One day we were picking through the CD’s and I came upon “Evita”.
Understanding his penchant for musicals I picked it out and said, “Woo, look Boog, ‘Evita’.”
He was enchanted.
He bought the CD and since has seen the movie and now wants the movie as well.
It’s nice to know that little things amuse him.
With so-called “average” kids, it’s not so easy to get your thrills by going to Goodwill.
Mostly their thrills come from the Mall or from Wal-mart or from some kind of Boutique-like store that their friends go to like “The Gap” or “Old Navy” or something like that. My kids were never into stores like that…But I knew kids that were. Why? I don’t know. They are cheaply made clothes in high priced stores. Although, I happen to like “Old Navy” stores…They have fun stuff.
I look through the books at Goodwill but they rarely have anything I want to read. I like to read books that are made into movies. Usually after the movie is out and I’ve seen it and everyone around me says, “Oh, well, the movie isn’t as good as the book.." I want to know why?
I just got done with one book that they totally pooch screwed as a movie. They lost tract of what the book was about while making the movie.
It was a really good book. I liked it. I couldn’t put it down.
Now, I am reading another book that so far isn’t as good as the movie was because of the way it was written. It’s difficult to read. I don’t like the way it goes back and forth from the first person writing of each character. Yuck. It’s confusing. Maybe it will get better, I don’t know. I like travel logs, as long as their funny and some non-fictional self help and some non-fictional studies. “The Nun Study” was such a book, although it boardered on being dry and academic.
Boog likes books that are about Steven Spielberg; his favorite director. I daresay that I have ever seen him want a book more than the two he has on Steven Spielberg. Possibly if they bring a book out on a musical he likes or on the movie “Lady Hawke” he will get that or at least ask for it. But till that time, we go on allowing him to buy video tapes, DVD’s and CD’s at Goodwill.
There is the possibility this could all change.
As a child he loved “Star Wars.” Now he can’t stand it. He loved “Toy Story.” Now he can’t stand it. We don’t know why. I know why he can’t stand “Star Wars.” I mean if you watched “Star Wars” over and over again until eyes nearly bled you too would be sick of it. And for three years straight that was all he watched…After a while I wanted to tape over “Star Wars” and I loved “Star Wars” when I was younger.
For some reason, he hates the beginning music of “Star Trek: The Next Generation”. And he used to try and mimic “Space: The Final Frontier….” It came out “Space…..” And the rest was unintelligible. But now he can’t even listen to that opening music.
Maybe someday he’ll be the same way about Goodwill but I doubt it. It would take someone working there that he didn’t like. Like some kid at school that was a reprobate…But until then I guess I will have to put up with him going overboard on the chores every once in a while when he wants to go to Goodwill and shop for new and interesting music or tapes….
I absolutely hate driving somewhere I am not familiar with…I would rather have an impromptu colonoscopy than have to drive somewhere I am not familiar with. I especially hate it when I have to do it alone or with children. I do not feel like I should put anyone under the age of 21 in jeopardy of seeing my full blown fury or complete collapse of confidence should I either A) get pulled over or B) get in an accident.
Yesterday I had to take my niece to find a prom dress. This is something I told her I would do for her, citing the fact that I told her that she should go to every dance and every assembly and every party and every event no matter how small to enjoy her senior year of high school. I find that an important thing, since it will never come again. Her father, my brother in law is a certifiable jerk. I have a lot of patience with him, but it has been tested time and time again by the fact that his parents refuse to discuss with him his Asperger’s, which I am almost sure he has and is undiagnosed. They continue to hold out for the idea that he can receive disability for the stroke he had due to his uncontrolled diabetes. Unfortunately it seems that they feel less ashamed of the facts that he is out of control with his diabetes and unable to work, and has hardly ever been able to hold a job (because his uncontrolled mouth, and uncontrolled anger) and would rather live with that than have him diagnosed with something as clean as Asperger’s.
I wish I could have some pity, but really, I’m not ready to sit with him through the diagnosis process, and really it is time for them to belly up to the bar, so to speak.
But I digress.
My niece and I decided to go prom shopping yesterday afternoon. About one o’clock.
We loaded Booga and my niece in the car and I took the path I normally take to get into town. I have been driving this road for oh, 22 years. So I figured I knew it pretty well.
My niece has been raised by wolves and I have to constantly remind her of protocol with nearly every social thing. So I had to tell her that we will, “Yes, be buying shoes, what’s wrong with you? You can’t wear the same shoes with every dress? What are you going to do with your hair? I can’t be there, I have an anniversary party to attend and you are on your own….Do you have hose? Do you have hairspray? Are you driving your brother’s car? You’re picking this boy up? His tux vest is maroon? Well, that’s not a color I’dove gone with….”
In this same instance, that I am quizzing my niece on all her accessories for prom, I’m failing to notice the cop on the hill. Mostly because I have driven this road forever and have been at the same speed limit since I started living here. By the time we got to the top of the hill he had turned around in a rather sloppy “Y” turn, and turned on his lights.
And of course I pulled over. I’m not a fugitive from justice. I don’t get speeding tickets-at least generally. I’m the one people are honking at or passing on the highway because I’m not going fast enough. Of course, then again, I was always the one driving the Buick LaSabre before….
Now I’m driving a sports car.
So he comes up to the window and asked me for my license and insurance and my registration and so forth and asks me if I know how fast I was going? Apparently 30 in a 25…Then he asked me how my driving record was? And I told him perfect. And it is. With the exception of one time in 1995 when I was driving in my home town and I was caught speeding through a speed trap there. My mother was not happy at the police that day.
My niece was nervously giggling.
I sat in the car and waited. The long you wait the more assured you are of getting a ticket.
And I figured that was going to be my fate, because it was taking an ungodly long time to call this into the station. So there I sat with Booga and my niece laughing nervously. I knew she was laughing nervously, nothing to be done about that, everyone has their own way to handle stress, apparently that is hers and then Booga ask, “Are they gonna arrest me?”
“No Booga.”
I think aside from the cop at the high school, Booga has never really been around an officer in an official capacity. Police have come to our door for things before but he’s either not been there, too small to remember, or been sleeping. And of course, I thought he was going to say something that he pulled out of his repertoire of movies, so he could express himself. But aside from wondering about that, he was quiet. Unlike my niece, who was still giggling.
I had a friend who was raised for a short time in South America and was terrified of the police because of it. One time she got stopped and it was all I could do to get her so she wouldn’t bolt. She was so scared and upset; I actually had to tell her, “They’re not going to kill us.” And I was oddly the calm one. Weird.
I’m not crazy about seeing the police come up my driveway to ask questions about the neighbors or having to call them because some neighborhood kid decided to spray paint our swing set. But I’m not terrified of them. Do they make me nervous, well, when I’m in a car, in the driver’s seat approaching a ticket, yeah, I’d be stupid to say no?
I have a cousin who is a cop and a nephew who is cop; I have other people in my family in law enforcement. These guys don’t want to take you in anymore than you want to go in. They would rather this be as routine as ever. They don’t want to hassle you anymore than you want to be hassled.
My niece couldn’t stop giggling. My husband would later get angry about it and tell me it was totally disrespectful because here I was trying to do something nice for her…But there again, “raised by wolves.”
I didn’t want to get after her about it because it was something her dad would do. I didn’t want to say to her, “Keep giggling, this is going to come out the money I would have spent on your dress….” She’s had enough people putting her down and hurting her feelings in her life time. So I said to her, “Laugh now, someday this will happen to you.” Because it will, it’s inevitable. I don’t care who you are, you will someday get pulled over by the police for something. When you’re pretty it’s because you’re pretty. When you’re in a ratty car it’s because they are sure something is wrong with it or you are more likely to not have insurance….And when you’re in a sports car it’s more likely you’ve been speeding….They see a sports car and it’s just a cop magnet.
He gave me a ticket. Of course he gave me a ticket. I’m a middle-aged woman driving a sports car. I’m not 22 anymore. I was stirred but not overly shaken. I knew I had to keep my calm for my niece’s sake. I couldn’t allow this to ruin her experience of prom shopping. I just went about my business-move along.
Luckily, we got her dress for fewer than 200.00 because she picked one on sale. With shoes and bling it was a little over 100.00 and with lunch it came to a little under 200.00 and I told her that I had never gotten out of prom shopping that cheaply. Of course the ticket is going to cost me about 100.00 so, it’s about how much I figured for prom. Kind of stinks. I mean, it really does push one to say, “No good deed goes unpunished.” However, I maintain this is just another star in my crown in heaven. Maybe someday she’ll repay the favor to someone else in her life. Or maybe I will just be a footnote in her life as the aunt that took her to get homecoming and prom dresses. I’d be okay with that I guess; as long as I’m looked at in a good light.
I’m just going to be more careful when I drive through there. Although I believe I will take another route for a short time. At least I will take another route until I get more confident where the speed limits are again.
Am I happy about it? No.
But I can’t sit and stew about it. That’s not good either.
Just learn and go along with life.
Really, that’s all you can do.
For
about three days afterward I walked around my house finding pieces that said
that they had been here.
There
was candy, change, unmade beds (that I don't care about- I would rather do that
myself anyway). I found shot glasses, and pillows, cups left in their rooms.
By
next week this time perhaps the house will be back in order in a semblance of
something that it was before my children danced back into it for a short time.
Its funny how time blurs out the chaos and disorder of having children and how
quickly it returns to that when they do….
Movie
ticket stubs, wrappers from Nutty Bars, toys that they got as gag gifts for
Easter-
And
my daughter's broken Rosary.
Just
to be clear, we're not Catholic. My cousins are, in fact the whole family on
the other side of my dad's immediate family are Catholic. This side is
Lutheran.
My
grandparents had a vague notion of religion, so my dad and my Uncle Clare
matriculated to their spouse's form of Christianity.
There are some vastly huge differences.
And
there are some vastly huge similarities….I was watching "Doubt" on
television, which is a show about a Catholic school going to through a crisis
and the hymns and liturgy were very much like what I grew up with in the
Lutheran Church.
But
again, there are vast differences.
For
starters, we don't use Rosaries.
I
like Rosaries. I personally think that they're pretty. They are interesting
because there are so many different ones. To be honest, I own a Rosary; it
hangs behind my desk on a bookshelf. It's a cross and I like crosses, and I
like worry beads and they are a nice combination of the two. The Catholic
religion in and of itself is a source of great interest to me. I’m curious
about certain aspects of it. Someday I’ll probably read up on it and have
something intelligent to say about it. But until that time…I’ll remain curiously
peering in and wondering about it while walking with friends through the
Catholic supply store in town.
When
my daughter broke her Rosary we went to that Catholic supply store. I explained
to my daughter that it was okay to use a rosary like worry beads and that it
was okay to use them to concentrate on prayers but to make sure that people
knew that she wasn't doing "The Rosary"; because she isn’t Catholic
and because it’s not what we believe. She rolled her eyes and explained to me
that she already knew that. She said she was comforted by them in her pocket,
she said that she rubs them and it helps her stay calm. Okay, that’s fine I
guess.
We
went in and like always I was confronted with a lot of Mary.
I’ve
always been intrigued with this deep belief in Mary the Mother of God. Let’s be
blunt, Mary was the mother of God. That’s a fact and Mary was a remarkable
young woman; she was the mother of God. And like me, she was given a
task….Now I'm not saying that what I do with Booga ranks right up there with
raising The Son of God, I wouldn't even venture to say such a thing. I mean,
he's God. But the "given a task" thing….You betcha.
We're
all given a task. Some are more pressing than others. Mary's was monumental in
and of itself. God did give her an amazing gift but at the same time gave her a
tremendous burden and in the end a bitter heartache.
He
gave me a bitter heartache but in the end a tremendous gift.
Boog
was an unexpected package with really difficult moments from the get go. The
pain involved in finding out that your child does not meet the expectations you
gave them to fulfill at birth and to find that out in the bizarre and
some times frightening way that Autism presents itself is calamitous at best.
But
in the end Booga has been a comfort at times when I've least expected it. He's
been comedy relief at times when the tension was so thick you could cut it with
a knife. He's been the ice breaker in many conversations, and sometimes, Booga
has been the unwitting excuse to leave when we were in the midst of a miserable
moment.
He
amazing in the way he strives to be at his best at all times. He dislikes being
wrong. He is a perfectionist. These are all good things for people to be, I
believe. He delights in making me proud, which is all any parent can ask of any
child. And he loves his parents and his Lord with an unconditional love.
He's
a burden laden- tremendous gift.
My
daughters Rosary was fixed and left on her fan in her room.
I
put it on her door. The foyer needs a cross anyway.
The
Rosary remains a nice poem for me-the piece of Jewelry a work of art like any
piece of jewelry that might get left for me by my daughter when she leaves home
from time to time- And I accept it like that.
I’ve been told that I am brave and that I have courage.
I question that because I only do what I have to do. If I
could choose not to do it, brother I would have in a heart beat.
Courage is not speaking rudely to someone.
Courage is not being cruel to those weaker than you.
Nor is it standing up for something when what you’re
standing up for is unclear… or
simply going with the crowd against something, especially if
your not informed on what that something is exactly.
Courage is that thing that you have to do for love of
someone, something, or somewhere, because you love them, Courage is doing
something because you have to, not because you want to and accepting that this
is the only way.
It’s being uncomfortable with driving in a big city but
doing it anyway, because someone needs you to pick them up from the airport.
It’s watching someone’s children while they are ill and taking care of their
house even though you’re terrified of being alone. It’s going out on a field
and fighting for your country’s sake knowing that you might die.
It’s standing in front of someone to protect them from
violence.
It’s taking a stand against someone for the betterment of
someone else’s life.
Courage is saying to someone how you really feel about
something in their lives and knowing that it is for their own good- even though
it might damage your relationship. Even if it means that you might never see
one another again, even if it means they don’t forgive you for a long, long
time.
And that is courage.
Courage is not comfortable.
The reason that people who are courageous don’t see
themselves as courageous is because the larger part of courage has to do with
what is necessary. It’s not happy or fun, or something you want to do. It’s
something you have to do. There’s not a choice in it. It’s something that must
be done. And since it seems you’re the only one to do it, then you must.
That’s courage.
I’ve seen Booga be courageous in the face of something
really awful.
And going to the dentist is sometimes really awful.
I think it’s the whole thing about dental work being in your
head. I mean, it’s really close to your face, and you really can’t ignore it.
Booga had to have some dental work done and since I was dealing with
the shock of my Uncles death- I forgot to soften the blow of telling him that
he had to go in and have a wisdom tooth removed. On top of that I forgot what he was going to the
dentist for? He had a cleaning a couple of months before but I forgot what else
had to be done because there was talk of a possible root canal on one tooth
that ended up being a filling. So I couldn’t remember what he was going to have
done to his mouth. And so.... there was no preparing him.
The nurse came out shortly after he went back with the
dentist and told me that he was asking them to please not take out his tooth.
However, you know, he had to have it out- it was sideways.
It was lying down inside the gum because that is Boog’s fate. If there is going
to be something wrong with him it’s going to be REALLY wrong. So he had to be
brave and have courage and just do it and …….He did. He lived off pudding and
jello and ice cream for a couple of days.
Oh the pain of that….
That’s courage.
Courage is not screaming and running out into the lobby and
lying down on the floor and kicking and thrashing and refusing to have the
thing done. Boog’s not stupid. He’s autistic and he knows that tooth removable
brings along with it a good deal of pain.
He’s had mouth surgery before.
He remembers it.
There are days I wonder about if I can take one more minute
dealing with Boog’s problems, then there are days I ponder at the person he is,
the bravery he shows and a strength of perseverance of his character, that
leads him to propel himself towards adulthood.
He’s more of a man sometimes, than some of the typical men I
know, and has more guts than some people could actually muster up to simply go
out into the world and face the day.
So courage is being able to face the difficult near
impossible and go, “Okay, I guess I can do that.”
We do it a lot without thinking about it. We just don’t give
ourselves credit for it.
I’m not going to kid you and
say my life has been easy the passed few weeks.
Not so much. My husband was in Israel and then in Scotland and finally England when my Uncle passed away. I’ve never had someone
from that generation of my family
pass away, and I spent two weeks at my Uncles when I was fifteen. Just so I
could know what it was like to see another side of my family. I was curious
about these people who I didn’t know but whom I shared DNA with.
My grandmother was all for me
going to Portland. What I got from her when I was out there was how
much she and my grandfather pitted their boys against each other. What I got
from my cousins was how much they didn’t know about their grandparents. I knew
my grandparents bad points and their good points and they didn’t know them that
well, not at least well enough to see the bad things. I was real with my
grandparents. I didn’t shade my grandparents from the glow of my many misdeeds.
I let them see me for all my
warts and blisters.
I was not a nice girl. I was
not a good kid. My parents let me know this in no uncertain terms. I never
could come up to the standards my mother set out for me. I resisted every bit
of molding she attempted and all I got from my father was the distinct feeling
that he would like me much better once I was no longer his responsibility. He
made a statement to that affect when I got married to my husband.
He said, “She’s your problem
now.”
He’ll never know how much
that hurt me.
I know it was his attempt at
humor but it hurt me non-the-less.
However, I felt a great loss
with the passing of my Uncle. No matter how much he and I didn’t know about
each other. He was a constant in the fact that he wasn’t here-constantly.
However he was here intermittently. And now he is no longer here permanently.
That permanence brings a feeling of sorrow to me and mine. Something we can’t
transmit over words or feelings to anyone else that hasn’t felt it. However
here it is and we must deal with this thing.
Booga attempted to hug me
right after I was told that he was in a coma.
Hugs for Booga are not easy.
This is a kid that if you go to touch him he jumps back like you have leprosy and
it’s the Middle Ages; throws up his hands and jumps back.
It took a long time to make
him understand that the world was not going to end if you hugged someone. I
spent many times with him as a child trying to get him calm and nothing worked.
NOTHING. He ran about like a mad man, slamming his head into the wall. He spent
nights riding his spring horse because I couldn’t make him go to sleep. He
needed something to make him calm. And there weren’t enough meds in the world
to help him cope with this….
However, he loved water and I
theorize that Autistic children love water because it holds them but doesn’t
forcible touch them. There is nothing aggressive about the water, except maybe
fierce fish. People can be aggressive. Touch can be aggressive, children’s touch
sometimes are primal and aggressive.
But water isn’t aggressive.
It’s just there.
Now, I come from a family
where everyone…EVERYONE hugs. I mean you walk in the door, three people are
there to hug you and give you a kiss and it’s expected that you reciprocate
this affection. So you can imagine the complete and utter horror in my family
when someone in their family didn’t want to be touched or kissed or hugged. And
my family is a giant moving force to be reckoned with. There is always someone
at my parent’s house and my parents don’t even have to be there. We know
everything about everyone else’s business and we all know each others faults
and misgivings and despite these things we proceed to love one another. (My
mother would nod and agree with that.)
So imagine being an autistic
child in this family where family is so important and where so many people want
to love you….It’s like he looked at them and said to himself, “DON’T LET THEM
LOVE YOU! YOU DON’T WANT THEM TO LOVE YOU!!! EEEEekeek!” It is somewhat a
nightmare of chaos.
(As a young autistic adult Booga spends a lot
of time in the basement of my parent’s house in the family room; where no one
is generally.)
This is what I had to deal
with whenever I went there with Booga when he was this small, confused,
autistic child and I didn’t know what I was going to do.
Then one day I saw a show on
how forced hugging helped some
Autistic kids learn to calm down, along with brushing and gentle touch…And I
thought, “Wow we could do this thing.” Boog can tolerate some touch, clearly,
because he loves water and it’s a form of touch…” (Or at least I told myself
that).
Another thing was when Booga
was small, we were so poor that we couldn’t afford the machinery or the
specialist that people were calling us about or telling us we needed for this
special kid- I mean I had people telling me I should give him this special diet
and this special kind of wheat germ or some kind stuff like that –and when your
okay financially this all well and good but we were barely making it on what
little money both of us brought in. So, I did what I could and made good with
what I had. And what I had was a bear grip.
This therapy called Holding
Therapy consists of taking an autistic child and holding them tightly until
they stop thrashing about and calm down. I did this with Booga. I held him in
my arms as a small child in a bear grip until he stopped thrashing. I won’t lie
and tell you this works the first time. And guess what? You can’t be a wuss.
You can’t break down in weepy tears when your child hits you. You have to be
strong and allow them to struggle against you…Come on and be big strong adults.
This is a five year old. You have a hundred pounds on them.
It took a long time. A LONG
TIME.
Until slowly he stopped
struggling sooner and sooner; then one day, he hugged me back a little.
However it was not the kind
of genuine hug you normally would get from someone. It was the kind of hug that
you would get from someone who is pissed off at you, or doesn’t like that whole
“touchy feely” thing, or is just not that warm a person-but who is trying to be
for appearances. I call this his “fake hug” and I have to tell him when he
gives me one of these fake hugs to give me “a real hug, not a fake one.” It’s
kind of like his fake smile. It’s not his real genuine smile, but the one he
gives when someone wants to take his picture.
He still does not like hugs.
He doesn’t like to give them. But he will. In a moment of great joy, give you a
hug of some fashion. It might not be what you thought you should get but it’s
there.
Did it help him in every day
life? I don’t know. Booga speaks. He holds conversations. He is high
functioning. He is a lot more than the diagnosis I was given that he would
never speak and probably have to be institutionalized. Which was so much Kanner
crap. Yes I said Kanner crap. He reads and writes and loves to cook and is
crazy about music and may be fabulous- We’re not sure-jury still out on that.
But I do know that the tactile methods at school and some thing’s we did at
home, made it easier for him to cope.
So how does this all relate
to my Uncle dying….Well, the day I found out my Uncle was dying and was being
taken off life support, I drove home from getting pizza and Booga reached over
and like a typical man not wanting to actually hug you, he squeezed my
shoulder, and then squeezed it again.
Then later on I got a hug of
a fashion from Booga, who wasn’t quite at all sure what to do about this woman
crying in his living room. Something had to be done; he just wasn’t sure what
that thing was.
He tried to make me laugh and
I did laugh to make him feel better about
my feeling bad. I actually couldn’t find anything funny at that moment.
He was doing something that a
lot of teenagers do when they are faced with the fact that their parents are
not superhuman and do have emotions and cry and hurt and sometimes you’d just
about do anything to fix it…He was trying to make it better for his mom. That’s
very amazing to me. Because there was a time when he couldn’t have comprehended
that something was not right with his mom or dad or brother or sister.
Sometimes we look at things
and go, there is a reason this happened. A reason someone is the way they are,
a reason for the rain and snow and for the change in seasons. There is a reason
Booga ponders the meaning of sorrow and the look of loss. He knows he’s felt it
but he hasn’t connected those feelings and the way they look on someone else’s
face and what it means. He hasn’t figured out that he has those emotions and he can “look” that way. He’s seen death and
knows its permanence; however he hasn’t figured out that this “look” and these
emotions go hand in hand yet. He hasn’t figured that all out- but he knows that
it needs to be comforted so it can go away and we can function normally.
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