14 posts tagged “autism”
That is what I am wondering today. What is my purpose? I try to be of service as much as possible, but sometimes the price is almost too much.
Before you read further, let me explain that I am complaining here to get it out so that I don't get upset with the kids. I'd also like to say that they are all amazing, wonderful kids. I just need to vent.
I mentioned in a previous blog post that I took in a friend of my youngest son. He isn't the problem, but it does add to the chaos. See, both of my sons have Asperger syndrome, a form of high-functioning autism. My youngest son's friend has sort of the same problem.
In the last two weeks, they lost one of my phones and lost the cover off the other one so the battery hangs from it. They bent our metal basement doors so they don't lock anymore (I haven't figured out how they did that yet). They bent the blades of our riding lawnmower. I can't count how many plates, bowls, silverware, and glasses they've either lost or broken. Even though I remind them constantly, they never remember to pick up after themselves. They never remember to take care of the milk or wipe the counter when they're done. They use my computer and then I find that settings have been changed or there is a new virus or my bookmarks have mysteriously vanished. To be honest, I am so sick of the word "oops". They try so hard to help, but invariably something always goes wrong worse than what they were going to help with in the first place. I try to remember that it's the thought that counts. AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!
There, that's better. The worst part is that we're barely getting by financially, especially with the rising gas prices and another mouth to feed. So I can't just replace something that gets lost or broken or pay to have things fixed. If I can't fix something, it gets added to the things to fix. Unfortunately, with fibromyalgia I can't exactly run around the house fixing things like I used to, and it sucks.
My business is going well, but it's nowhere near enough to cover our bills or replace and repair things. I'm hoping someday it will be more than enough to cover our bills :) Until that day comes, things are tough.
Sometimes I wish insurance companies would start selling kid insurance, or insurance for people who have family members with a disability who may break things. That would be awesome.
So back to my question. What is my purpose? I honestly believe God doesn't give people more than they can handle. I'm trying to follow my heart in how I handle things. But things don't seem to be falling into place. Maybe they're not supposed to, but I sure wish they would. Sometimes it can be exasperating and disheartening.
My son did something really sweet for Mother's Day. He printed off an application for Extreme Home Makeover and gave it to me. How sweet is that? I don't think we'd qualify, but what a nice thought.
I'm looking forward to a relaxing afternoon today, watching The Golden Compass and working on my new amigurumi crochet patterns (I wish I could tell you about them - I'm so excited!). This will be a much-deserved break after a very busy week.
About a year ago, I took in my youngest son's friend. Things didn't go very well, and he had to move out due to behavior issues. Well, a year changes a lot. He is now much more mature, working on his GED, working, and even joined the Army. He just passed his Army test last week. My rule is that as long as he works hard and follows the rules, I will help him as much as I can and provide a place for him to stay. Poor kid was living in a motel room and was very depressed before moving in with us. Fingers crossed and toes crossed that this works out. He's almost 18, and I want him to have a good chance in life.
Not sure if I mentioned this before, but my youngest is a graffiti artist. He's been working on it for a few years now. Unfortunately, he got it in his head a few months ago that he was going to start tagging places to get rep. Well, we live in Maine. There is no rep to get in Maine. I have talked to him over and over again about how that is vandalizing property and it is against the law. He didn't see it that way. Until the police came to our door. Yeah. My brilliant kid decided to tag the bathroom at the local grocery store while I was shopping. On the bathroom wall, he wrote, "you can't catch me." Funny part is, the police showed up at our door about 20 minutes after we got home. I was still putting away groceries. Guess they could catch him. Why are teenagers so stupid? So now he has a juvenile corrections officer he has to see twice a month. She is going to let us know in a few days what the reparations will be, whether he can work off the damage and repair it and do community service or if we have to pay for it. I'm really hoping they let him repair it himself and do community service. He'll learn a much better lesson from that.
In a way, I'm glad he got caught. He was starting to think he was almost an adult and didn't have to listen to me anymore. Now he will be under this corrections officer's rules for the next six months with court hanging over his head if he does anything wrong. That will help me keep him in line.
I got prescriptions for Lyrica and Naprosyn last week. I can't believe it, but they really work! I'm catching up on laundry. My house is cleaner than it has been in months. I'm still really tired and sleep a lot, but it has definitely improved my life. I have to get an MRI next week for my lower back. There were a few weeks last month when I could barely put any weight on my left hip. I could only stand on it for a few minutes at a time and then I'd have to lie down and rest it. That was the most horrible pain I've ever had (probably because I've forgotten childbirth :P).
Now for a movie and some crocheting...
The way autism affects the lives of my family never ends. Just when I think we've had a good few days, the phone rings or we get another letter reminding me that my family isn't "normal".
My 18-year-old son wants to learn to drive. He signed up for driving school in February, but being in a classroom setting was too stressful for him. The driving instructor just called me and said they had an opening in a class starting next week. I said we'd have to consider other options because of the classroom setting, and the instructor told me all the awful things about not taking the classes, mostly that getting hands-on driving instruction only would cost $50 per lesson and he wouldn't qualify for the certificate from driving school that would save us lots on our car insurance when I add him to the policy.
At which point I lost my temper a bit. See, Mr. Driving Instructor, this isn't about money. This is about my son's mental health. I'm sure you thought you were helping me see the big picture, but what you were really doing was pounding home to me, again, that we're different and because of that it will cost us lots more money (as usual) and we don't get the benefits that "normal" people get (as usual). Thanks so much.
This post is in reply to Dirty Penguin's post called Autism, Medication, and Special Education.
I am glad autism is finally getting attention, but also it concerns me that kids who are diagnosed with it are all going to be lumped together and treated the same. Our society has a very bad habit of trying to fit everyone in a neat little box. There are lots of us who live outside the box and even thrive here.
Both of my sons suffered such severe anxiety and depression during middle school and high school that they both dropped out soon after entering high school (one finished 9th grade, the other made it through 3 months of 9th grade). No matter what the special education teachers, counselors, psychologists, doctors, or anyone else tried; the school environment was damaging to them. Please don't read this as my children are unteachable, or stupid, or uncontrollable. Quite the opposite, actually. They are both incredibly intelligent, creative, talented, and friendly.
Maybe this is simplistic, but I compare their experiences in school to a person sitting at a desk doing work while someone is poking them in the ribs with a stick. No matter what the person does, they keep getting poked with the stick. Would you be able to get anything done if someone kept poking you with a stick? You can't move away from the stick. The stick doesn't go away. The stick follows you everywhere. Now imagine having people get mad at you because you can't get your work done. Imagine getting upset with yourself because you can't get your work done. It isn't your fault, but you feel like it is. The stick is my not-very-good analogy for the environmental stimuli children with autism face constantly... lights, smells, sounds, movement all around them. It is overwhelming.
As far as medication, I can only hope that doctors are thorough in their examinations and consider every other possible diagnosis, including genetic and physical and not just mental and emotional. My oldest son was misdiagnosed with attention-deficit disorder, but they did not recommend medication for him.
My youngest son was misdiagnosed over and over. First it was ADHD, then bipolar, then oppositional defiance disorder. While these diagnoses were being juggled over his head, I was believing what the doctors were telling me. He was tried on so many different drugs that I don't remember them all. I knew deep in my heart that something was really wrong, that he was acting out because something was wrong. He was admitted to a day-treatment program at a psychiatric hospital where they tried him on more drugs. Nothing helped.
Then his primary care physician left and he got a new doctor who was fresh out of med school. The new doctor took one look at him and asked if he'd ever been tested for Klinefelter syndrome (a genetic disorder that causes behavior problems and breast enlargement, as well as some other things). He underwent genetic testing (just some blood tests), and that was the answer. He has to have an injection every two weeks to keep his hormones in balance, and that brought my son back to me. Now he is the Andy I always knew was there under all the anger and depression. He still has autism, but the anger is gone, the rage is gone, the anxiety and stress are gone. He can listen and follow simple instructions. He can learn (in the right environment). He's an awesome graffiti artist too :) I just wish he hadn't had to go through hell to get where he is now.
I wish schools were able to tell parents that some children just aren't able to attend school and that it is okay, that there are other ways of getting education without causing severe damage to the child. Sometimes the education system (even special education) can do more harm than good.
After being out of the school environment for a little over a year, I am proud to say that my oldest son has earned his GED. My youngest son is working toward getting his. Because of an awful loophole, he has had to wait six months before being allowed to go for his GED. I don't know if he will succeed or not, but it's okay either way. Why? Because they are both happy. When they were in school, they were always stressed and never happy. They smile all the time now, and laugh. I can't tell you how wonderful it is to hear them laugh again.
Why do you live where you live?
Submitted by memtony.
I really like this question, because the answer is very meaningful to me.
After getting divorced about 10 years ago, I bought a 3-bedroom ranch about half an hour outside of town. It has 2 acres, apple trees, a big old cherry tree, and a 30'x40' garden plot already established. I planted a garden 3 years in a row, but the insects and animals got most of it every year. I've gotten a few apples, but the birds beat me to the cherries when they are in season. I do bring in sprigs of cherry blossoms and apple blossoms to enjoy though.
We can see two of our neighbors' houses from our house, but they are still far enough away that I have privacy even out in the yard.
We have barely any traffic and hardly ever hear sirens or our neighbors. There are no street lights, so at night the sky is beautiful and we can see all the stars. (That part freaked me out right after I saw the film Blair Witch Project and then drove home through the woods.)
The main reason I love where we live is privacy. My sons both have autism, so while they were growing up, there was a lot of screaming and yelling (not me, them :D). We have a lot of holes in our walls from rages, and some garage windows suffered one of my youngest son's tantrums. But our privacy made things a lot easier to handle. The rages finally subsided and the boys have calmed down. Someday I'll get the holes in the walls fixed, but there's no rush.
This might sound a bit strange, but I'm also glad that we live far enough away from friends and family that they don't stop by all the time. Not to be mean, I love to see them. But our lives are so chaotic that it's difficult to be surprised by a drop-in guest.
What with the divorce when my sons were young and the difficulties they have on a day-to-day basis, I am thankful that we have a home that will be here for them for a very long time to offer some sense of stability and peace.
Every day I have to walk a very fine line with my almost 17-year-old son. It's the line between supporting my child's independence and self-esteem versus wanting to give him the help I think he needs (in other words, keeping my big mouth shut).
My son has trouble with conceptual thinking and logic because of his autism. But on the other hand, he wants very badly to become independent. He also thinks he has the ability to do anything, even if he's never tried it before.
Unfortunately, the conceptual and logical thinking difficulties get in the way. Which is why I don't have any speakers connected to my computer right now. He thought one looked loose and tried to fix it. Yeah, didn't work. But on the other hand, he was able to fix the belt on the riding lawnmower.
He can't tell when someone is joking with him, making fun of him, or outright using him. He once took a $50 bill from my purse so he could buy cookies for all of his friends... in junior high.
Unfortunately, because he is so accepting of people, most of his friends are troubled kids. I think some of them just appreciate the fact that he accepts them, but others are out to use him. Last summer, he went for a bike ride with a friend. He had a good time, up until his "friend" somehow removed the tires from his bike and left him stranded. Thank goodness I got the kid a cell phone. But the most difficult part of this was trying to explain to him that his friend wasn't being nice leaving him there with a broken bike. He wants so badly to fit in that he always gives other kids the benefit of the doubt, and I end up being the bad guy because I have to try to get him to understand what happened.
The other problem is not understanding consequences of his actions. He rides his bike so far that he's too overheated and tired to ride home. I mean 8-10 miles, sometimes into the next town. We've had talk after talk about this. The last time he did it, I told him that it was his responsibility to get home. Silly me. I forgot he takes everything I say literally. I meant that he would have to ride his bike home. He took that to mean don't call me for a ride home, so he asked some neighbors of a friend of his for a ride home. Yes, strangers. He lost his bike privileges and was grounded. We sat down and had another long talk after that one. He tried to understand, but he really doesn't get it. He has never met strangers who are not nice, so to him they are all nice.
Now we're facing even scarier situations. His friends can drive. He's getting older, almost an adult. He wants to do the things his friends are doing, like getting a job, going to college, etc.
I am facing difficult choices in the near future. The reality of my son's disability is that he is barely capable of taking care of himself, let alone working. But on the other hand, I have to support his self-esteem and independence.
We've talked about different community programs that are available for teens with disabilities, but he isn't interested. Maybe with time, I don't know.
Eventually I will have to decide whether I need to file for guardianship of him. That way at least I would know that his health is taken care of, as well as his bills and legal issues.
It sure ain't easy.
Jenny McCarthy was on The View this morning and talked about her new book, Louder Than Words: A Mother's Journey in Healing Autism. She also said that she was going to do her best to get the word out about autism, which is great.
She also runs the website Indigo Moms. I don't buy into the whole Indigo or Crystal Child thing, although I wish it were true. It's a bit too Star Trek for me. Here's a little snippet from her site:
In the metaphysical and holistic fields, the term "Indigo" is like an awakening. Many of us have been waiting, patiently, and not so patiently, for the arrival of this new generation of Light Beings who are here to usher in a new world consciousness.
If you are new to the term Indigo, let me explain...
The Indigos are a special group of gifted enlightened old souls who have been born unto this planet to help transform the consciousness of this world, and to guide us all towards a higher level of evolution.
They are the "System Busters", the "Spiritual Warriors", here to break down all of the old traditional paradigm systems within our educational, political, religious, medical, nutritional, technological, family and all fear-based belief systems. They are the "Trail Blazers", bringing with them Universal wisdom, Divine knowledge and a clear vision of perfection. Their mission: to help create a whole new paradigm, where we live in a world of integrity, compassion and unity.
Is autism the next step on the evolutionary ladder for mankind? I've been thinking a lot about this lately. If you think about it, it makes perfect sense.
Humans were not meant to live the way most of us do. We started out as cavemen, just hanging out in caves. No alarm clocks. We slept when we were tired, ate when we were hungry, and hunted and gathered our own fresh food. Did cavemen have stress? Certainly not as much as we do on a daily basis.
Now look how we have evolved so far. We're stress machines. Everything we do is done to please someone else, not ourselves. Why do you get up when you do, eat what you do, do what you do? We do most of the things we do to please a boss or a spouse, or it's convenient and we're in a hurry. How do our lives today resemble how human existence began?
What do most of us do every day?
- We have to use an alarm clock to wake up
- Commute to work
- Spend 8 hours or more sitting at a desk
- Commute home, run errands
- Stand in lines to buy prepackaged foods that have been stripped of their nutrients
- Little time spent with family
- Rush through evening chores
- Go to bed, never really accomplishing anything satisfying to our souls
Think about this: Autistic people have a hard time dealing with a lot of background noise (from electricity, fluorescent overhead lighting, clocks ticking, etc.), bright or flashing lights, loud noise, a lot of commotion, too many people around, and being too hot or too cold. Whatever is bothering them in their environment must be dealt with or they have difficulty functioning. Human beings have been trained to ignore our own basic needs. How many times have you had to go to the bathroom but put it off for a minute and then forgot about it? We don't sleep enough or eat when we're hungry. We don't relax when we're stressed. My sons have shown me that autistics do take care of their own basic needs, or they see to it that someone does.
Autistic people also have a low tolerance for stress. If they experience even a small amount of stress, they cannot function very well. One of my sons shuts down completely and stares at a blank wall for hours if he becomes stressed. So, autistics have to work through this stress before they can continue on with their day. What do most of the rest of us normals do? We hold it in, push it down, forget about it, and blow up later. That's not very healthy.
People with autism also self-soothe some of the stress they feel by rocking and flapping their hands and with repetitive movements, even with shutting down. Think about that for a minute. How soothing is rocking in a rocking chair? Or swinging slowly on a swing? There was a video posted by Dirty Penguin a while back comparing soothing activities of normal people and those of autistics. Check it out, it's very interesting.
I think somewhere along the line between the caveman and us, we made a wrong turn. Now Mother Nature is trying to make things right by forcing us to take care of ourselves and our world. Think about it, 1 child in 166 has been diagnosed somewhere on the autistic spectrum. 1 in 166??? Does that really sound like an epidemic or evolution? How many people were diagnosed with autism 20 years ago, 50 years ago, or a century ago.
It's something to consider, don't you think?
Addendum: I was just listening to the ABC Radio broadcast that Dirty Penguin has on his site. John Constantino of Washington University School of Medicine said If both parents are in the upper 25% of the distribution for autistic traits, it raises the likelihood that one of their children will be in the clinical range for an autism spectrum disorder by tenfold. "These traits are highly genetically determined. They are continuously distributed."
He also said that from the study, there is also preferential mating for the traits of autism. It is viewed as a preliminary finding at this point. At the end of the interview, where I left off, he was talking about how they had to find the genes responsible for autism to treat it.
Curiouser and curiouser...
Dirty Penguin posted a link to this video. It is a very honest look at the despair and anger that parents go through when they have an autistic child. Not at the child, but at the fact that we see our children in pain and can't help them, and at the medical and educational communities for not being able to help them.
If you would like a glimpse into what my life has been like for the last 17 years, watch this video:
Dealing with Autism Every Day
