Hold

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.

And there are times…. I hope he never will.

Sleep to Dream Him....

Boog loves to sleep.

I check on Booga a lot.

I make sure he is breathing-A LOT.

I worry about him because I was told a long time ago by a sister of an Autistic man, to be aware that even though he might not be displaying it now, he might someday have a Grand Maul seizure. A Grand Maul Seizure is like this; twitching, rolling eyes back, drooling, losing control of ones bladder. Read more here. It is also called a generalized tonic-clonic seizure.

Well, let me see, along with PICA which is a tendency to eat things that are not food, when he was small, like chalk and detergent (one time he ate "Bar Keepers Friend"), he also displayed some Petit Mal symptoms. So Grand Maul is not out of the question.

And I fear it I think because my cousin died from choking during a seizure (or I believe that is what they thought) in the institution she was relinquished to- I believe, I can't be sure, in her sleep. So the underlying fear is manifested in my mind.

Now if you don't know what Petit Mal seizures are, they are seizures that might not be anything but looking like they are lost in their own world. It's a blank stare for a mere few seconds and then they are back in the world. I've seen him do this in the car. Staring at nothing and then if I said his name or handed him something "click" he's back. It's like when your computer freezes for a second or two and then releases. Read more about that here.

This fear was very present-And very real because not too long ago when a classmate of Boog's died in her sleep.

His classmates went to the funeral as did he.

I did think about attending.

I couldn't do it. I just couldn't do it. I did leave a condolence on the web guest book but I just couldn't bring myself to see this happen to a disabled child. I feared I would be uncontrollably rendered asunder by sadness and that I would make a fool of myself by crashing into a torrent of tears. Which had I known the girl would have been appropriate but were inappropriate by way of the fact that it would have been all about me thinking of "all but for the will of God…"

And that kind of selfishness is not something that is needed at a funeral; especially one for a child of special needs…

My poor children have had to attend classmate's funerals without me before-I don't care to go to funerals unless I absolutely have to go to them. But then who in their right mind does find it pleasurable? I mean seriously? No one wants to see a family member or close friend stretched out like that. Seriously.

I dressed him like he was going to church and they all went together with their teacher and came home afterward with their teacher.

This was the first time Booga ever experienced a funeral.

I don't generally take him to funerals because for one, I don't really want to have to concentrate on what he is doing all the time. And two, most of the funerals I have had to attend, are people that he has either never met, or wouldn't know because he hasn't really had contact with them.

God Bless him he handled himself with amazing compassion. He walked to the casket and looked down at his classmate and said, "She looks so beautiful." I think his teacher told me he kissed her on the head and said, "Goodbye Samantha." And it was so touching that he brought her to tears.

He had asked me earlier in the day when I was helping him get dressed what a funeral was exactly. I told him, "A funeral is for people to say goodbye to their friends and family when they have died. So you have to say goodbye to Samantha."

And that's what he did.

I don't relish the time that I "have" to take him to funeral for someone. I don't. Not just because I want my family and friends around me forever. But because I don't want to deal with his grief which I will be unable to help him conquer.

Here's my thing, Boog is high functioning enough to let himself try to hug you. It's not a real hug. To get real hugs you have to say, "Give me a real hug not those fake ones." More on how I managed to get him to touch other people let alone hug other people-later.

But when he is really aware of the emotional significance of a situation, he does his best to allow you to be comforted by him-with a hug-not for long, but he does allow it. It's something we've worked on since he was small.

This is no small triumph.

For an autistic it is nothing short of a miracle.

However, to live in this family that survives off of human contact, well, it is an essential part of living like learning to feed oneself.

The biggest problem will be the amount of human contact that will take place will be unacceptable to him. He allows "me" and maybe his dad, and his brother and sister, and sometimes (because the world would stop spinning if not) his grandma to hug him. But not for long and it's always a tense hug. I imagine large amounts of time in the bathroom stimming. I imagine lots of questions. I can't however imagine his grief because any time Boog has grieved for being punished or for not getting something he wants or for us not allowing him to obsess about something- it's inconsolable. You can't make it better.

All the training and work goes out the window and you get an autistic man in the midst of the biggest "stim-fest" ever and there is no hugging, period.

 No amount of talking, no amount of telling him its okay.-Its anger and frustration to the 3.144444444 or pie degree. Simply because the Autism doesn't allow him to understand that it is okay to feel angry, and sad, and frustrated.

I'm grateful for the fact that these things didn't come up earlier in his life when he was completely out of control.

I thank God for that.

…And thankfully again, with this latest familiar passing he will be spared that emotional nightmare simply because of geography, but does it make me concerned less about it? No.

Its 3:28 in the afternoon and Boog is still asleep. I can hear him turning over in his bed through the wall of my office so I won't check on him-otherwise I would.

I know that today the son won't rise till late. And because I know he is breathing-his late sleeping doesn't bother me.

I'll just let him sleep because it's good for him.

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Mortalitas in prosapia

My Uncle died yesterday. This would be Boog's Great Uncle and my father's only brother and sibling.

I got a call last night that my dad's brother was being taken off life support. We didn't even know he was in the hospital till last night-although we knew he was battling cancer. I was sure my dad would fly to Portland, Ore. to be at his funeral but this morning when I called him to ask him to include me if he was flying out there he told me he wasn't going. He said he told his brother everything he needed to say last time he talked to him. He told me that it was too expensive to fly out there. And I told him, "Dad, I will pay for you to fly out there if that's the problem. I can do this, I can make this happen for you." and he said, "I appreciate that Sharon (my dad always calls me Sharon when he's trying to get a point across) but we said our goodbyes."
Apparently my brother offered to fly out with them and he told him the same thing.
It's dark and cold today, although there is nearly no snow left on the ground. It rained the past two nights. I made a carrot cake this morning. I thought of my Grandma Shrum and how she baked all the time and it was always something scratch it seemed until her later years. The smell of cinnamon in the house is helping me cope and making me think of her.

It's funny how kitty's know when your sad, because my cat is right here for me to lean my head on and you know she has a big black, soft, coat and she's just sitting in the window next to me allowing me to invade her space. I one time asked my mom if she thought my cat loved me and she said, "He loves you as much as a cat can love."
Both of my cats have been acting different today, probably because they know something is up.
Last night I was getting pizza because it was "Pizza Friday" and I was crying in the car, and Booga tried to hug me and every once in a while he would brush a tear from my cheek. I told him he was such a nice boy.
The world goes on...It keeps spinning. People keep buying and selling, cats keep meowing, boys keep sleeping, babies keep smiling, diminished somewhat by that one person who is absent in the world.

Stupid people shouldn't breathe....They're a sad lot and shouldn't be using our air....

Outrage over Seven Hills West Public School putting autistic children in cage

Or butt wipes on parade...
   Click on the title above to read the whole story....

• Autistic children kept in fenced area
• Treatment inhumane, says NSW Opposition
• Matter of safety, says Education Department

A SYDNEY primary school that pens children with autism in a fenced area at lunchtimes should be investigated for human rights violations, the New South Wales Opposition says.

Parents with children at Seven Hills West Public School are angry that pupils with special needs are placed inside a fenced enclosure that has one tree, a bench and a dirt floor.

"To see the type of facility which autistic children are being penned in is outrageous," he said.

"I've seen cattle yards in better condition.

"You cannot treat children with autism in this way.

"I think it is in breach of every anti-discrimination act in the country."

The Department of Education said in a statement the enclosure was set up after parents raised safety issues.

"The school is located on a busy road. Without this area, the students may leave the school grounds and could potentially be injured," the department said.
(And they can't seem to find one on one aids to be with them because?)
"Some of these children have no sense of boundaries and do not respond to staff asking them to stop.(So get the one on one aid....)
Once the school is satisfied a student will listen to directions from staff members and is also aware of playground boundaries, the child can use the playground."

The department said any student in the school could use this area if they chose.(Maybe...If it's Wednesday....And there was an "R" in it?)

"The area is never locked and students are supervised by a school learning support officer (what otherwise known as gestapo?)at all times," it added.

They should be put in a fenced in area with a tree and a bench and told to stay there until they learn how to act like human beings.

And I hope it rains.
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~Ora pro nobis
(Pray for us) ~

Disposable Children

I can’t tell you how this makes me feel. It’s unreal.

I have had more children that called me “mom” than the three I gave life to…I love teenagers. I love the whimsical romance of the poetry of a teenaged girl, the stunning brightness of a technical teenage boy on a computer. The mechanical accuracy of a young man working on his first car; I love the dedication of a young man ready to serve his country for the love of it. I admire the quiet intelligence of the hunter sitting in the woods waiting for a buck to walk by and joy of his first real triumph. I admire the artistic beauty of an uncluttered mind. I appreciate the clarity of the song bird whose voice rises clear and stingingly fresh from the back of the choir, searching the crowd to find my face and impress me. They are young adults with open minds and yet they children.

And it is why the intolerance and stupidity of parents stuns me.

It’s something I can’t believe.

More than once I have had children sleeping on my couch because a parent can’t cope with their child being a teenager and more than one child have I taken in because Mom or Dad can’t seem to get it together enough to be grown ups.

I had one girl who lived with me, finished high school and got her drivers license while living with me, who had never known a real mother and was astonished that when the test instructor asked her who was “Mom” I volunteered and said, “Me, I’m her mom”. She just stared at me, stunned that I would claim her as my own. The poor thing always had a look on her face like a dog that had been beat too much.

I had another who couldn’t stand living with her mother and stepfather on the weekend. She was on my couch so much that we would buy her favorite food every week because we knew she’d probably be at our house.

One time we weren’t told about someone sleeping on our couch and my husband got up in his underwear and got some milk in the middle of the night to find a teenage girl of unknown origin staring at him.

I had another whose parent didn’t want to frankly be a parent anymore and would anything to “get rid” of his kid. His daughter had four months to go before high school graduation and he was already done. We occasionally had custody of his daughter.

I had a boy going into the Marines lying sick on my couch, because he didn’t want to go home the night before. I heard someone coughing and got up and gave him Robotussin. My daughter told me, that he told her, that even his own mother wouldn’t have done that for him. I did that for him and I didn’t even know him.

My children brought other kids home so often that there were times I would have to ask my children “Who is sleeping on the couch?” or “Would you please tell me before someone is coming over to stay, so I don’t walk out in my pajamas?”

That’s how common it was.

Disposable children.

With despicable parents, that squat and give birth and walk away after they are no longer cute. If it was legal they would tie them up outside and feed them once a day and make an unheated box for them to live in?

Here’s the thing, if you don’t want to have children but want to get married or have this ungodly promiscuous lifestyle…Then get yourself fixed because, like a cat, you’re going to have unwanted children following you around wanting to be fed and clothed and like a cat, you’ll get to a point where you don’t want to deal with them sucking off you anymore, so you’ll either ignore them, or verbally or physically abuse them until they go away.

But, it only takes weeks for kittens to be weaned, at four weeks they are essentially equipped to handle the world; whereas, human children can be weaned but cannot handle the world for a couple decades or more.

And I’ve seen a cat try to jump through a screen door to get to her kittens whereas these supposed “parents” wouldn’t even sacrifice a weekend for these children- let alone jump through a screen door to save their young.

If you do want to get married and just want to put off having children, that’s fine, and if you just find yourself having a pregnancy that is unwanted, for the sake of the entire world, give the baby up to some family that would want it and love it. Don’t keep it because it’s a nice accessory to wear on your arm. This is a life long commitment that lasts longer than the eighteen years that the government tells you to keep them. That magic number was made up by draft boards, and is too young for anyone to be able to decide what’s right, wrong or sideways for them.

I have seen children who are intelligent and their parents are proud of their achievements, come to my front door with gashes in their head because dad was drunk and couldn’t take junior’s alleged mouth anymore. I don’t care who you are, that’s not cool. I’ve seen honor students, with blazingly bright futures….thrown to the wolves because Mom and Dad couldn’t handle raising their child anymore because they were a teenager.

What couldn’t you handle?
What could be so important that you couldn’t deal with a brilliant, talented child being a teenager? What is so awful about a child who has a little bit of a difficultly in school…A little bit of a difficultly? A pierced lip, a brightly red dyed crop of hair? That’s difficult? What has made you so self-important as to think that you can just brush off this person’s feelings and thoughts because you thought that they were unworthy of your time? WHO MADE YOU SO VERY IMPORTANT?!?

Here’s what makes me so very angry? What fills me with such rage that I wish to go ahead and do violence to someone? What makes me, a gentle, warm human being, filled with compassion and patience, ready to verbally slaughter you!!!!

I wish you could-LIVE MY LIFE!

And here is why. I would in a heart beat if God told me he would grant it, gladly give my right arm, all my talents and gifts back to God….Give them back….My art, my voice, my love of music, my love of history, my self expression through writing, my photography, my eyesight, my legs….Give them back willingly, I’d cope with my dysfunction, ….IF I COULD MAKE MY AUTISTIC SON MARTY, AN TYPICAL NINETEEN YEAR OLD MAN.

Not especially talented, not especially brilliant, not especially anything, just average….

And you have thrown that away, simply because it’s inconvenient for you.

You’ve beaten the joy out of it, you’ve destroyed it’s fiery brilliance and made it a pathetic creature with your words….And yet it exist and wants to be loved and is functional and intelligent and will grow up and walk and work and breathe and have children and get married. You’ve stomped it bloodily into a writhing pulp of massively dysfunctional thought process that will lead me to sort the rags of what is left of their self-esteem and try to sew it into a person again. You unthinkable piece of human refuse.

LIVE MY LIFE! LIVE IT! For one day, alone. Live it, for a week, live my life with an autistic child who will never live alone. Whose destiny is unsure? Live with the chaos of it. The inconvenience of it, the time it takes, the energy it sucks and heart ache of it. The pain of watching your child look so very average and be so very disabled…Live with someone who may never know what a wonderful thing it is to dance at prom, or drive a car, go on a date, wear a cap and gown or go to a party and have friends.

LIVE MY LIFE!!!

YOU’RE THE BANE OF SOCIETY INCARNATE!!!!

And the heartache you will carry later in your life, you totally and fully deserve.

Be alone in your old age………….You’ve totally, seriously, in ginormous ways… earned it.

Buddoo and continuing parental monkey butts!

Booga is not happy. He doesn't like his cousin living with us. He doesn't like that she takes half of his chores and he keeps asking us when she is going home. It's disrupting his happy home and making him retreat to his room.

Well, probably this Saturday she'll be going home. We took her for two weeks to let the sparks cool from her parental monkey butt father.

Thing is that everyone wants us to keep her but she has problems of her own that are complicated and need to be exclusively focused on and I personally don't have time or strength enough to deal with that. And she has only four months until she graduates from High School. Really not enough time to make any real difference.

And then there is Booga.

I feel sorry for her, but they should have removed her from her monkey butt parents years ago, when she was small. Had they done that she would have been a very different girl. I will try to get her into college, but I don't know what's going to happen to her.

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I found a letter today that I wrote right before we lost our brown lab "Bud". I was thinking about him especially today. I don't know why, maybe because I saw the movie "Marley and Me" and it brought back all sorts of memories of him.

 

I am writing in regards to a person I can no longer find and haven't been able to find in years.

This person sold us a Brown lab named "Bud" who was a year old at the time. She was very concerned because of his sweet nature that whoever got him would not love him as much as she did and wanted to keep in touch with us; unfortunately, time and the pressures of family business broke the ties.

We bought him outside of what was once Quality Farm and Fleet. I can't remember his previous owners name exactly, but I think it was Jodi.

We just wanted to tell you that he is still alive all these years later. 

He is well, despite some slight medical problems with his breathing, and doesn't look his age. Even though he is very old now, and is geriatric, he has been the most wonderful creature. He is part of family and has grown up with our children. He is highly spoiled and spends most of his days now in the bedroom with the air conditioner we bought for him. Not for us…For him. There has never been a sweeter dog, never a gentler old man or a more patient beast, he is still just as beautiful as the day we got him and not because of his physical appearance, but because of his spirit. We simply wanted to thank you for him and tell you he is still here. And not too worry about him ever because he has been very, very loved and adored by his family.

Thank you for him. Thanks for taking him back to live with you when he was a puppy so that we could find him. Thanks for a giving us a great dog.

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