I'm Tired and I Want to Lie Down

Image by Danilo Rizzuti

Soup of the Day:  PTSD

And not my child's.  Could I be diagnosed with PTSD?

According to this article about the stress levels of mothers of kids with autism, it's highly likely.

When I read the article, I guffawed at first.  Then I thought about it some more.  I thought about the incident that took place on Monday, when I found myself calling 911 because E. was so frighteningly out of control.  He was threatening to kill himself and was fighting tooth and nail to get past me to get into the kitchen and get a knife. I have bruises covering my arm.

I stayed calm throughout the majority of the ordeal (well, as calm as possible).  Once the police arrived and took hold of the situation, I sank onto the couch.  I felt my chest began to contract, I started breathing in gasps, and my hands were shaking uncontrollably as the adrenaline that had been flooding my body took hold.  I felt sick, like I was going to throw up.  Later that night, I was hit with major digestive issues.  According to a quick web search, my tummy troubles were the result of the major adrenaline dump that had occurred earlier in the day.

This is what severe stress looks like.  While not every day is that bad, every day is a struggle.  Every day has some kind of stress attached to it.  From little things like arguing over whether E. had cleaned himself properly to bigger issues like today's, when I was visited by maintenance.  It turns out that E. had been dumping the garbage out by the side of the building instead of in the dumpster.  Why?  It's actually a farther walk to the location where the dumping was happening than it is to the dumpster.  And of course the mess was spreading as birds and scavengers went through our garbage bags.  The guy who visited me was clearly pissed about it. I'm pissed too.  There goes my stress level.

Now I'm trying to work out an appropriate consequence (I'm thinking garbage pick-up this weekend).  I know that there's going to be a fight tonight when we confront him, and I feel sick -- preemptively.

The other part of the article that spoke to me was that mothers of children with autism are interrupted at least one day out of every four, compared to other moms, who are interrupted less than one day out of ten.  It's why I left my full-time job.  How can you keep up a job when you are constantly fielding phone calls from the school or child care?  I'll tell you -- you can't.  At least today I could just stop what I was doing and answer the door.  But trying to juggle constant messages from human resources, write-ups for missed work, the dread of knowing that you have to go speak to your manager because you have to leave for the second time that week...  Constant stress.

I have no solutions.  I try to take care of myself, but some days it has to take a backseat to dealing with all of E.'s crises.  Today is one of those days.  I feel like a mess, but I have too much work to do.  Writing in the blog is my self-care for the day.  I'm hoping to meet up with a friend later, but I may have to cancel, depending on how E. handles the revelation that he's been caught red-handed.

This is my life.  And then people wonder why I'm cranky.

On Intuition

The What Ifs can be scary sometimes.
Image by digitalart

Last week my daughter spiked a fever of 105.  I knew she was running a fever, but I didn't realize how high it was.  Every time I approached her with the thermometer, she would fight me like a little wildcat.  By early afternoon, however, she was complaining that her ears were hurting.  She's always been prone to ear infections, and, in fact, had tubes placed when she was just a year old.

I called the pediatrician, but they were unable to see us right away.  My husband and I debated whether we should take her to the Urgent Care to get her checked out.  In the meantime, she went into her room and covered herself in her heavy comforter and fell asleep.  We stood looking at her, trying to decide what to do.  "Take her in," the little voice in my heart said.  "She's been acting listless all day, and she probably has an ear infection.  Take her in now, and you won't have to deal with the ER later."  Alright, alright, I said.

I felt terribly guilty as I extricated her from the blankets, and I couldn't help noticing again how very warm she was.  We got to the Urgent Care and had to wait a bit.  The place was packed.  She leaned against her daddy and looked up at me with bleary eyes.  She looked incredibly pale and fragile.

When we were seen, the nurse performed all the usual checks: height, weight (she's getting so big!), blood pressure.  Then she ran the thermometer over her forehead.  I caught a glimpse of the number on it as she pulled it away.  I did a double take and my jaw dropped.  105.1!  "Oh my god," I said.  "Is that thing accurate?"  The nurse tried it again and got the same result.

The fever finally came down with a good dose of  ibupofen and acetaminophen and a little time.  But my mind keeps going back to that moment where she had been lying in her bed, wrapped up in that heavy comforter. That awful question of what if? dangles.  What if I had just let her lie there?  How high would her fever have gone without intervention?  What effect would the comforter have had?

I brought up the question to some friends the other night.  "Her fever would have broke and she would be fine," my friend said.  "Yeah, but what if it didn't?" I asked.  "But it doesn't matter," she replied.  "You followed your intuition."

That same intuition was what drove me for so many years, trying to figure out what was going on with my son.  I tell the full story here of our attempts to get E. properly diagnosed.  Doctor after doctor, therapist after therapist. Even once we had our diagnosis, we continued working until we felt like we had the best team possible.  Why?

Intuition told me to.  "Something is wrong," the little voice said.  "This isn't typical."  So I continued to search for answers to the questions.  And I always will.

It's Here! It's Here!

Today I was thrilled to receive a package in the mail containing my contributor copies of Autism Asperger's Digest.  As a writer, this is one of those major moments:  my first print story.

The article is "Scouting with Asperger's."  It tells the story of how E. got involved with Scouts and what a major confidence builder it has been for him.  If your child is interested, consider Scouting.  The article details why Scouting is such an ideal activity for kids on the spectrum.  For more details... you'll have to buy the magazine!

I have to tell you though.  Opening the magazine, seeing my name, reading through my words... this is a huge moment.  I never dreamed I would find myself writing in the niche, for a number of reasons.

My life often feels like it revolves around Asperger's.  I remember reading the book House Rules by Jodi Picoult.  The character of the mother stated that she felt like she herself sometimes had Asperger's because of how quickly it becomes all you can see and talk about.  I know that feeling... well.  Since Asperger's was the reason that I quit the "9-5 real job," I felt some resentment toward it.  I also doubted that I had much to contribute to the conversation that had started long before I arrived on the scene.

Turns out that I do have something to contribute after all.  Yesterday I received one of the most valuable compliments ever when the editor of the magazine, a woman who has read pretty much everything that's ever been written about Asperger's, emailed me to tell me that the article I had just submitted (a piece on advocacy that will run in the November issue) had actually helped her to have the best IEP meeting she had ever had.

This is exactly what every writer hope for when we apply fingers to keyboard.  That our words will somehow make a difference in the lives of those who read them.  That my words could make a difference in this woman's life is a profound moment.  I can't wait for them to be read by others across the nation.  That is why I am here.

Although when I began to write I had envisioned topics that were the equivalent of a slinky black cocktail dress, I find that this niche is really the comfy sweats that I'd much rather be wearing.  The cocktail dress wouldn't have fit right, and frankly, I probably would have looked pretty silly and out of place in the dress.  The sweats rock and always fit right, no matter how frazzled I feel.

This is a Strange Problem to Have

The latest passion.
Image courtesy of Wizards of the Coast

So you may recall me mentioning a while ago that E. was starting a new medication, Intuniv.  The first day of the medication happened to coincide with the first day of the Magic card incentive program at the school.  Since that time, about a week and a half ago, E. has been...well, not a little angel, but certainly a lot easier to live with.  He's staying in class a majority of the time.  He's only walked out twice.  For him, that's quite the accomplishment.  Bear in mind that prior to this he was booking out of at least one class a day.  Usually more.

So what is causing the change?  Is it the new medication?  He's up to 2 mg per day now, with a goal dose of 3 mg per day.  Or were Magic cards really the magic bullet?  I simply have a hard time accepting that.  In all fairness, we haven't hit the two weeks that his stepdad and I were betting on.  Things could still go south.  I'm just really surprised by the change.

E. is incredibly excited about the Magic cards.  He sits and plays with them by himself, reading them over and over again and organizing them.  He had Gavin show him how to create a deck and he did so.  He joined a Magic club at school so he can play after school on Thursdays.  Unfortunately, every other Thursday E. has an appointment with Carrie and I can't reschedule it, so he can only go twice a month.  But he's really excited and enthusiastic about it.  Is this just the passion of the month?  Will he be on to something else soon and all of this good behavior be just a short blip?

Here's the other thing I'm worried about:  We have our meeting March 1 to discuss his evaluation and placement.  I'm concerned that the timing of this sudden streak of good behavior is going to screw us over, that he will be evaluated and found to be in better shape than before, that all of our work and planning is going to be for nothing.  He's probably being evaluated in class even as we speak, and the record is going to show him as a little angel, not as the chair-throwing, hitting, kicking, cursing dervish that he's been for the past year. I know he isn't "cured," but if he's having a good month and then the day after the meeting he completely loses it, we have to wait that much longer for the next re-evaluation.  I don't know what to do about this.  The worst thing that can happen is for the evaluator to come back with "he seems fine to me."

"We Can't Help You"

Image by renjith krishnan

These are words that every alphabet soup parent dreads to hear.  Is their child really that challenging that they've managed to stymie even the experts?

Apparently so.  We were told this last week.  E. has been in counseling for months to help with a specific issue (Soup of the Day:  PTSD).  Unfortunately, the protocol were all developed with neurotypical kids in mind and nobody seems to know exactly how to help a child with Asperger's.

Here's the problem:  The protocol and programs that the counselors follow to treat this issue involving repeated minor exposure (talking about the situation in general followed by talking about what happened to the child specifically) with the idea being that the child's reaction to the trauma will eventually be minimized.  At the same time, other issues such as guilt and anger are addressed and tools are given to help the child cope with those emotions.

E. was having nothing to do with it.  As is usual for a child with Asperger's, bringing it up would cause him to completely fixate on it and it didn't matter what type of technique was used to help him replace the negative and angry thoughts, it would end up in a major blowout, usually involving hitting, kicking and cursing.  His extreme reactions have brought him to the Children's ER twice.  I've been afraid to leave him with the counselor because she is a tiny thing, smaller than he is, and I'm scared that he's going to hurt her.  I'd rather have him pound on me than take it out on her, as painful as that is to admit.  They've actually had to call security before.

So last week, the counselor asked to meet with me and the hubby, without E.  She told us that at this point, she's concerned that continuing to make him come to the appointments is just retraumatizing him, and that's the last thing they want to do.  He has the tools, and when he's not triggered he can tell them to you, but once he's triggered they fly right out of his mind.  She wanted to emphasize that if he wants to come talk to her, she will always be there and available to him, but making him come week after week was not going to be helpful.  She's going to be in touch with Carrie, E.'s counselor for all things Asperger's, and she's hoping that Carrie will continue working with him on the tools, outside the context of the trauma.

I was hoping that this counseling would help him deal with the issue better, but it looks like it's a no-go for now.

Delving into "Serenity"

Photo by anankkml

I'm not going to go into details, but I was raised knowing the Serenity Prayer.  Not being a particularly religious person, I had about as much use for it as I did for the Lord's Prayer -- namely, it was something memorized and said by rote when everyone else started reciting it.  I never really gave much thought to the words and what they meant, but it stuck, lodged in my brain like the lyrics of some song from the '80s I probably should have forgotten long ago.

Today I was working on my weight loss "homework."  I was writing in my journal, noting the progress I had made.  It took some work, because I had neglected to do it the last couple of days.  I was feeling overwhelmed by life in general and the last thing I wanted to do was analyze it.  But the only way to ride is to get back on that damned horse when he throws you off, so I was determined to get back into the groove.  I thought about what had sent me into this last tailspin.  What was the emotion that I wanted so badly to escape from?

It wasn't too challenging to figure it out.  It was that feeling of complete and utter powerlessness that comes over me when I'm faced with E. and his seemingly insurmountable challenges.  I feel powerless in the face of Asperger's.  I feel powerless in the face of the school system that wants him to fail before he can begin to succeed.  I feel powerless about not having money to simply throw at the problem and make it go away.

There it was, my limiting belief.  "I am powerless."  Okay.  Now, to change it into an empowering belief.  And suddenly, there it was, in my head:  "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."  I suddenly understood every word of that little mantra.  It meant something to me, today, in that moment, despite my previous lack of connection.  

The things I cannot change:

• E.'s condition(s)
• The system that the school is trapped in
• The cost of the programs I want
• E.'s behavior 
• E.'s reactions
• Other people's behavior
• Other people's reactions

The things I can:

• How I respond
• How I deal with the school
• The level of information I have
• The level of education I have
• The steps I can take to learn how to work within the system
• My own behavior

It's another tool in my arsenal.  It doesn't mean that there won't be any more bad days.  There will still be bad days.  There will still be times when I feel powerless in the face of the challenge.  There are times when I forget to use the tools that I have.  But every tool I add increases my chances of finding the right one for the occasion.

"I'm High-Functioning, Except When I'm Not"

I read this quote recently on a blog. I can't find the blog in question, or I'd link it.  I thought it was the perfect description of my son, E.  Yesterday was a slog, dealing with all the different aspects of the "when I'm not" half.

The entire day revolved around E. and autism.  It was a day when all I could think about was how very much I hate autism and the problems it causes.

The day kicked off at 7:30 am with a manifestation hearing at the school.  This was the result of a suspension following E. kicking his one-on-one para during a meltdown.  We are currently working with his therapist and the wraparound service to try to get him out of the public school system and into a therapeutic setting like this one.  We were hoping to have the opportunity to address that yesterday, but it had to be tabled for another meeting next month.  Instead, I was presented with yet another "incentive plan" to try to entice E. to hold it together for an entire day.  Mr. R. presented it proudly; it was clearly his baby.  This time it was Magic cards.  I'm sure it will work well for a little while, but these things don't last.

I always feel like they are completely missing the point.  It's not that he doesn't want to do well; he does.  It's that he simply doesn't want to be at school and my third period, it doesn't matter what you offer him.  Nothing compares to that need to leave.  Offer him whatever you want, offer him diamonds.  It doesn't matter.

The meeting about placement will be on March 1.  More work and research to do before then.  I've already put together a list about what CHILD can offer that the school district can't.  Guess what?  It's about a mile long.

The next meeting of the day was with Carrie, E.'s therapist.  The hubby and I attended this one (E. was allowed back at school thanks to the results of the manifestation hearing).  We discussed what to do next and where to go from here.  We agreed that intensive in-home support was needed.  We will be asking wraparound to help us get set up with a program called "Imagine."  I can't find the program she's asking about, but hopefully Aja and Jody are familiar with it.  It uses the collaborative problem solving model.

One of the concerns raised by wraparound was that "autism" is not listed as a diagnosis on E.'s IEP.  Asperger's is, as well as the rest of the alphabet soup, but apparently the state considers "autism" it's own separate category.  While Aja thought we should get his class changed, Carrie was concerned that by changing the class we would remove "multiple health impaired" and actually cause problems.  I'm rather confused by this -- the information is conflicting.  I'm also not sure I'm understanding this right:  Can a child only have one class?  Does "autism" cancel out "multiple health impaired"?  What about the alphabet soup children of the world?

We talked about what the future would look like without a more therapeutic placement.  It's an ugly picture.  I believe it would likely involve E. dropping out in the 10th or 11th grade.  If the aggression doesn't get under control or continues to get worse as E. gets holder, Carrie raised the possibility of a future spent in residential treatment.  This was the first time it was said out loud, and it terrified me.  It's bleak.

Next stop for the day was the Children's Autism Center for E.'s appointment with the nurse practitioner who does his prescribing.  We are still trying to nail down the sleeping component.  His trazodone was increased to 75 mg at bedtime.  We are also adding a new medication to the mix:  Intuniv.  We'll see how it goes.

By the time I got home, I was completely exhausted.  I felt hopeless, helpless, powerless.  What if everything I'm doing is just spinning my wheels?  What if the end result is going to be the same, regardless of how hard I fight?  But what else could I possibly do?