Monday, September 17, 2012

When the road has been too long...

I am...sad, frustrated, sick.   I drink, eat, and live this disability and it's running me into the ground.

This last week has been quite a rollercoaster.  Rodney had to have dental work done under anesthesia in the hospital last Thursday.  Friday was his 14th birthday.  Today, he has major abdominal pain and diarrhea.  All I do is tie it all together in my head.  He is sick today because he probably didn't poo over the weekend and we've had lots of processed food this weekend.  I had a headache most of the weekend due to smoke and dust in the air.  So, cooking wasn't much on my agenda.  And I am absorbing the blame. 

When I look at my son anymore, I don't see a 14 year old.  I see an 8 year old trapped in a young man's body.  I try to buffer his world in order to reduce his anxiety and frustrations.  I don't let anyone get in my way, including my husband.  He sees Rodney's capabilities.  He sees the pluses, while all I see is the negatives. 

Hubby:  Rodney really did a good job helping me yesterday.  I only had to get after him to pay attention a couple of times.

Me:  Did he see what you needed and get it for you?

Hubby:  Yup.

Me:  Just remember that he had nothing bugging him.  I know he is capable, but I want you to remember that he isn't always able to do that.

That's when Hubby got pissed off at me and stormed out of the house.  I wish I had just stuck to my first instinct and kept my mouth shut when he wanted to talk.  Hubby also keeps bringing home realtor notices for acreage close to our home.  He thinks that we should consider purchasing something for Rodney to live in or build on later so that he doesn't have to live at home with us for the rest of our lives.

I wish I had the luxury of leaving this situation for long periods of time.  I know that Hubby doesn't want to leave, but that he has to go in order to take care of the family.  However, I wish I could just get him to deal with the therapies, school phone calls and emails, and doctors just for a little while.  Just long enough to give me a break.  But that is highly unlikely to ever happen, so here I sit... 

...sad, frustrated, and sick.

Saturday, August 25, 2012

Why I am upset with IDEA

We have been through the ringer with our local school district and our oldest son.  He was diagnosed with Asperger's on the last day of his 2nd grade.  I requested an IEP assessment from the school district.  No answer.  No assessment.

Fast forward to 6th grade.  Three suspensions, a myriad of phone calls, and a certified letter to the Superintendent later and they FINALLY decide to do the assessment.  Surprise, surprise, Rodney qualifies because he has an autism diagnosis.  We had a big meeting to write his IEP.  Unfortunately, it wasn't much of a plan as he was starting at the junior high the following September.  When I met with the junior high principal, resource room teacher, and special services director, the plan looked promising.  They had a full-time aide assigned to help Rodney navigate the halls, his lockers, and a whole passel of teachers.  It sounded great on September 1st.  However, when the aide decided that Rodney was capable and didn't really "need" her help on the first day of school, all of our hopes went down the toilet.  She was required to work with Rodney all year, but that was never really helpful.  She was untrained and unprepared and the majority of Rodney's meltdowns during the year are directly linked to that aide.  There is so much more.  I don't want to have to "relive" any of that crap.  I desperately want to let it go and look forward to a better year.

I've spent the past 8 years hoping for that better year, but I can honestly say I've never seen it.  Any strides Rodney has made in just the last 14 months is due to the developmental therapy he receives outside of school.  He receives no services in school.  We have jumped through the hoops to get him developmental therapy and IBI in addition to occupational therapy(OT) and physical therapy(PT).  OT and PT didn't work out.  Rodney DOES NOT do well with challenges and both were too much for him.  So, this summer, we paid for a trainer to put together a workout program for him that the therapists and I can do with him.  During the school year, I am hoping to be able to take Rodney to our local gym and run him through the weights at least once a week.  That's great, but what about school?  I was informed by our therapy provider that because Rodney qualifies for IBI outside of school that he should qualify in school and that if the school did the assessment, our provider was ready to contract with the district to perform those services.  Yeah.  That was a nice thought.

The resource room teacher and aide filled out the assessment and sent it to me.  ME!  It wasn't scored yet, so I looked to try and find where I needed to answer questions.  No.  There was nothing for me to add.  They just thought that since I brought it up, that I knew where to send the assessment. 

Sigh.  I thought they were the professionals.  I thought they were familiar with the IDEA and all that comes with it.  I thought they had experience working with special needs kids.  I was so wrong that it is not even funny.

So, this summer after much thought, we decided to talk to a lawyer about this situation.  We know another family fighting a similar battle in the same district and I set up a phone appointment with one of the lawyers handling that case.  What came out of that consultation is that we will have to shell out at least $1500 in a retainer so she can review our evidence and let us know IF we have a case, Idaho has a two year statute of limitations on these kinds of lawsuits, AND the only remedies allowed under the IDEA are educational and attorney's fees.  So, in a nutshell, I have to shell out money to make the school district obey a law that is already on the books and is very, very clear.  Attorney's fees come some time later.  What part of that is going to convince the school district to stop this nonsense and get their act together?  Let me know in the comments.  I don't see it.

Tuesday, January 31, 2012


Anxiety is prevalent in our home these days.  OCD is a pretty serious concern and I admit I could be jumping the gun.  However, when it takes up to 30 minutes to walk out of the house, I think it's safe to say we have a problem.

I read an interesting blog entry at Chosen written by a mom with a son that sounds a lot like Rodney, but he is two years older.  She was writing about how her son came to her worrying over some assignments at school and how she responded to his worry.  I found it very interesting because I could have written that blog, but with a totally different outcome. 

Rodney doesn't seem to worry about school work.  When large assignments come up, he will procrastinate until the last minute and then he freaks out the day it is due.  I have tried to explain to him that if all he did was a little bit every day, it wouldn't be so daunting, but he doesn't seem to get that.  I am just as enabling as the mom in the blog and I usually go above and beyond by finishing the assignment with my son. 

I say "with" because I don't want to ever be accused of actually doing his work, but, truth is, I do his work.  I know he is more than capable to do the work.  I know, logically, that by doing it for him, I do him no favors.  But there is a part of me that cannot let him fail. 

When I was in the workforce, I learned that it was so much better to allow my employees the "freedom to fail."  I was effective as a "boss" when I refused to micromanage my staff.  I had to give them this freedom.  It's really not a bad thing and it is very cool thing to watch someone master a task and gain the confidence to do it on their own. 

So, why can't I do that for my son.  Maybe it's because when I tried, it didn't seem to ever work.  However, those attempts were prior to his diagnosis and I am still learning how to speak "Rodney."  Maybe it's because I don't want to witness any of my kids failing.  I don't think I hold back my other two children, but I'm not really an unbiased observer, am I?

Life on Elk Meadows isn't failing...totally. 

Saturday, January 14, 2012


Post Traumatic Poop Disorder

Hi, my name is Kim and I suffer from PTPD.  When I was a child, I was severely affected by stepping in dog feces and urine with my bare feet.  I cannot stand feet.  Manicures-perfectly acceptable.  Pedicures are right out!  No one, and I mean NO ONE, is allowed to touch my feet.  I will only touch my feet in the rarest of circumstances and I will not touch the feet of my husband or children.  I know why I am this way and I have no intention of changing.  So there.  La.*

On a more sober note, this really does mess me up and I think it has contributed to my lack of connection ability with people.  I can form meaning relationships, but I struggle with physical closeness.  That, and here's the ASD angle, I think has precipitated some of my son's issues.  When he was in Kindergarten and 1st grade, he obsessively washed his hands.  Before Asperger's was even mentioned, I thought that he could be OCD.  However, he never ritualized this behavior.  It went more along the line of "if I touch anything my hands are dirty"  as opposed to "to get clean, I have to wash X amount of times."  I hope that makes sense. 

I equate it with my feet phobia in this way:  I became so accustomed to stepping on dog mess, that I theorized that it was easier to step in my bare feet to make clean up easier.  Therefore, feet=dirty.  I cleaned them off, but I don't think I ever really felt clean.  I know, logically, that is why I don't like feet.  Feet still equals dirty to me.  I don't maniacally scrub my feet.  I just don't touch 'em.  So, in raising my son, I taught him to be overly cautious about washing his hands and I'm sure that my reactions to dirty, icky hands were probably the same as my reaction to dirty, poopy feet.  However, with hands, we have to use them constantly and touch different things, the message to keep them clean rang loud and clear.

Couple that with the concrete thinking of a spectrum disorder and it's a trifecta of crazy!

*As I type this, it seems to me that this would also go along with my inability to lose weight and keep it off.  In the past, when I have lost a significant amount of weight, I have failed to keep it off for any significant length of time.  Could it be that by discounting my feet has helped to foster my disgust in my overall appearance and person?  Logically, I should appreciate my feet and thank the Lord always for the wonderful job they do, but I can't.  I don't feel that way.  I don't appreciate them.  Hmmm.  How interesting, but very sad, huh?

So, for now Life in Elk Meadows can't stand feet.

Sunday, January 1, 2012

Happy? New Year!

Happy New Year!

OK.  Now that that is out of the way.  Am I the only one wondering why this New Year's seems so "positive?"  My Facebook feed is full of "looking forward to a great year" and "best year yet!"  I admit that I am a tad on the negative side today, but it just seems like the messages of "Thank God this year is over" just aren't there this year.  I dunno.  Maybe it's just me. I am also wondering about that whole Mayan Calendar thing, but I have bigger fish to fry.

Camp Asperger's or, as I like to think of it, my life has become more, well, animated as of late.  First, winter break is exactly the opposite.  Out of routine, no regular bedtime, along with lots and lots of sweets equals screaming, crying, fighting, and apologizing.  Unfortunately, that sums up my behavior as much as the kids'.  My hubby is still away at work.  He was supposed to be home for Thanksgiving, but then he was sent to another job in Alabama.  Now that job is almost a month over the finish date and I will be thankful if he is able to fly home sometime before the 5th of January.  So, no Dad at Christmas threw another monkey wrench into the mix.  That was sooooo not fun.  I really was never cut out to be a single mom.

Oh wait.  This is supposed to be a blog about living with Asperger's in the boonies, not my personal whining.  Sorry 'bout that. 

One of the behaviors that I mentioned above, the sticking fingers in the ears, is one of the most annoying we've ever seen.  He uses it to block out anyone and everyone speaking to him.  While he has his fingers in his ears he is usually saying, "Stop."  Sometimes, especially with me and his developmental therapist, he will add a "Shut up!" or two.

I'm sure that if you are a parent, you are thinking "WHAAAAAT!"  Trust me, the first few times he did that to me, I freaked.  Unfortunately, with this kid, freaking never works.  It might get me some short term victories, but it never works when it's an important life lesson.  As I type this, he just plugged his ears because his sister was trying to talk to him about Pringles.  Oi Vey.  I think we are going to have to learn to ignore this behavior to make it go away.  That isn't going to happen at school, so I foresee many phone calls and emails.

There are other behaviors, but almost too many to write about today.  I have a whole year for that, now don't I?  meh.

Life on Elk Meadows is {putting my fingers in my ears} Stop.  Shut up.