11 posts tagged “asperger”

For some strange reason that even I cannot understand, I thought that once my youngest turned 18, I was free.  Hahaha.. silly me. 

Quite a few posts ago, I mentioned that he got in trouble for graffiti.  For those of you who know about Asperger syndrome, this is his special interest.  It isn't funny, but if I don't laugh, I'll cry.  I finally convinced him to only do legal graffiti on canvas.  However, he didn't "get it" until after he was charged for spray painting on a building.  He is on informal probation (thank goodness). 

Back to the story - His probation officer wanted him to get a case manager and behavioral specialist to help him with his community service.  We had tried them in the past with no luck, but I was willing to try again.  We checked with our county autism program, but they couldn't help him because he was over 18.  I called the state Department of Behavioral Health, and they said he would have to have testing done to determine how the autism affects him.  That office referred me to their family information office.  They can't help me because I don't have guardianship, and there is no way my son could understand the application process.  I'm starting to get dizzy... anyone else feeling it?

However, the family information specialist at the Dept. of Behavioral Health was very helpful.  She explained the request for guardianship process and gave me some information about it.  I'm waiting for the probate office to open so that I can give them a call and request the forms.  They open in 7 minutes.

Now the only hurdle left will be to convince the boys that they need guardianship.  It makes sense to get guardianship on both of them - both have Asperger syndrome and both really need help with legal/medical stuff.  Wish me luck.  I think my oldest will understand and be fine with it.  But the youngest, well, he just turned 18.  I'm hoping I can convince him that this won't change his independence. 

The joys of parenthood ... it never ends :P

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.

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.

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.

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

My son turns 18 today.  I feel so old!

In order to minimize stress from my sons' autism, we handle holidays and birthdays a bit differently.

See, any change in routine is incredibly stressful for both of my sons.  That even includes happy changes, like a birthday party, waiting for Santa on Christmas Eve, or even a change like Daylight Savings Time.  They all ended in meltdowns, rages, and shutting down.

To celebrate birthdays, we have a birthday week or couple of weeks.  That way my sons don't get stressed with anticipation.  We have a small family meal with a cake on the day of their birthday.  We treat it just like any normal family meal, except we do sing Happy Birthday.  No big fuss.  My sons choose their own presents as we are out on regular shopping trips during the few weeks leading up to their birthdays.   I don't make them wait to open their presents on their birthday. That way they don't have to deal with the stress of anticipation.  I may cook a few special meals for them and pamper them with little surprises during their birthday week.  Logan got buttermilk pancakes for breakfast yesterday, and he's getting Chili's baby back ribs tonight.

We handle Christmas sort of the same way.  We have a family meal with their grandfather and uncle.  This year we didn't even put up a tree or decorate because it was too stressful for one of them.  We handle Christmas presents the same way we do for birthdays.  I don't make them wait until Christmas eve or Christmas day.  Again, no stress from anticipation. 

It's very liberating to not live by the retail norm for holidays.

As a matter of fact, it's interesting to watch what goes on when you're not a part of it.  Think about it... who came up with candy and cards on Valentine's day and chocolate on Easter?  The meaning of many holidays has been lost to commercialism. 

Have you ever had a dream that came true? 
Submitted by rescout.

Yes, and it has gradually happened over the last year. 

After years of struggling, my sons are both leading happy and fulfilling lives.

See, my sons both have Asperger syndrome.  My youngest also has ADHD and Klinefelter syndrome.  I've blogged about them before (I think).

Schools and doctors we dealt with for years focused on helping them "be normal" and "fit in".  They didn't realize that school may not have been the right fit, no matter the accommodations.

School was the most difficult environment for them.  They were both put in special education classes, but those classes were mainly geared toward kids with attention problems.  That was the worst learning environment for kids with sensory issues.  For my sons, it was very stressful and depressing for them. 

My oldest son quit school a little over a year ago.  My youngest just quit this month, after we had a long talk about it.  And you know what?  We are all happy.  My sons aren't having frequent meltdowns anymore.  They aren't getting angry over little things all the time anymore.  There are no more rages or holes in the walls.  Nothing is being thrown and broken.  No one is yelling. 

Now that they aren't stressed, some of their symptoms have just melted away.  Their attention spans are better.  They are smiling and happy.  They are learning life skills much easier now, and with much less effort.  My youngest son has even found an affinity for home repairs.  We have two interior doors that he is going to be installing this week.  That never would have happened when he was stressed out all the time.  He could hardly understand and answer a simple question without a meltdown before.

We're talking about getting them their GEDs, but that will be a stressful process, so we're taking it slow.  In the meantime, I'll just enjoy them being relaxed and happy.  They both have hobbies, and my youngest is looking for a part-time job.

Life is good.

OK, so I try not to vent much in my blog.  It's a happy place.  But I'm not in a happy mood today.  I'm in a pissed-off, people-are-idiots mood.

Embarrassing personal background details so you can understand why I am justified in calling these people idiots:  I'm disabled with fibromyalgia (tired and in pain all the time), diabetes, and diabetic neuropathy (nasty nerve pain that drugs don't help).  I have two wonderful teenagers who also have disabilities.  Son #1 has Asperger syndrome (a form of autism), and son #2 has Asperger syndrome, Klinefelter syndrome, and ADHD.  So, yeah, we're not a boring family.  Laughter is our best friend and helps us deal.

Anyway, I was on long-term disability until it ran out in October.  Long story short, I applied and was approved for TANF (welfare) until my Social Security kicks in (*on knees praying*).  As part of Maine's welfare program, everyone is required to attend mandatory meetings with a state-funded "employment agency."  OK, can I first say that if you're so desperate that you are willing to jump through red-tape flaming hoops to get TANF (at approx. $480 a month for 3 people plus food stamps), you've already applied for every job known to man or you aren't able to work.  Period.  OK, to be honest, I gave up my $45K a year job JUST TO SIT ON MY ASS AND WATCH OPRAH.  Seriously, I'm lazy like that.  I gave up the job I got by attending night school for 9 months, my dream job, working at home even.  Yeah, that's it.

So I got a letter about my mandatory appointment with this "employment agency."  I called my Aspire worker (the agency within the Department of Human Services trying to get all welfare recipients to work) and asked her why I had to go to this meeting since I am disabled and so are my children. 
Her answer?  "They make sure you are doing what you are supposed to and help you get SSI." 
My response?  "I applied for SSI 2-1/2 years ago, and I'm just waiting for my hearing date now." 
Her response?  "Oh, well, do you have a lawyer?" 
Me:  "Yes." 
Her:  "Oh, well, they can help you get services for your children."
Me:  "My children already have services. They have their own therapists, psych nurses, and psychiatrists."
Her:  "Well, I'm sorry, but it's mandatory."

*Sigh*.  You know, I'm sure somewhere down the line someone in the state government thought this was a good idea.  Probably.  I'm trying to think positively here.  It's not bad enough that we have 3-4 appointments a week, but now I have to go sit with this woman every two weeks so we can, what, stare at each other?  Puh-lease.

I was told about a county program that deals with autism by a few people.  I called there today, thinking they could actually provide information and services.  *Insert insane laughter here*   They're another same-old same-old case management agency that can "refer you to services available for you in the area."  This is actually code for "there's government money available, and we're gonna get it by providing no real services whatsoever."  

Let me clue you in to a not-so-well-known fact:  A parent with a disabled child or children (especially a teenager) already knows what services are available.  We don't sit around on our asses picking our noses.  Well, only sometimes.  Most of the time we are searching every avenue for a way to help our children.  No matter what you try to make us think, there aren't that many services out there.  Don't refer us to another agency, because they'll tell us the same thing you already did.  Just because a parent is on welfare and/or has a disabled child, that doesn't mean we are of lower intelligence.  Don't talk down to us.  Don't assume we are idiots.  Don't assume this is our first rodeo.

And a special note to those fine folks who look down on people who get welfare:  Not everyone applying for welfare is a deadbeat bum.  Many of us have fallen on hard times, and we need help to pull ourselves back up.  We aren't looking for a free handout.  We just need a way to keep our families warm and fed until we can get back on our feet.  I'd like to bring this up again:  I did not give up a career working at home making $45K a year just to "live off the state."  Get a fucking clue you idiots.  I had to give up my brand new Jeep, my credit cards, my career.  My health is gone.  I don't have one pain-free day, ever.   Because of assumptions by people who don't have a clue, families needing help have to wait through a 30-day waiting period to get welfare.  What do they do for those 30 days with no income and no savings?  Think about that a minute.  What about those people applying for Social Security Disability?  I've been waiting for 2-1/2 years for a decision.  How is that helping anyone?  It sure isn't helping me.

And think about this a minute:  We're not talking about getting rich, or even getting by.  We're talking about barely enough money to pay for a place to live and food.  That's it.  If you're lucky, maybe you can afford internet access.  But going out to a restaurant is a thing of the past.  Want to go to a movie?  Forgetaboutit.  Need a new car?  Tough shit.  Want the security of a savings account?  Sorry, you can't have one.  They count that against you as income.  Wake up and smell the coffee, and maybe open your eyes and see what's really going on.