Dope

No cure exists for autism.  That much we know.  But something that I haven't really discussed much in this blog, and that perhaps bears looking at now, is how autism is treated organically.  And by that I mean, what do parents and caregivers do to alleviate the symptoms of autism other than take their kids to therapy sessions and seek out specialized education?

You can't really treat autism as a whole.  It's a mystery, it's an enigma, we have only scratched the surface of it.  And each child is different.  What one autistic child does may be unique to that child.  However, there are main symptoms of autism that many children share, that often can be alleviated with the help of medication.  Some of these symptoms include:

OCD (obsessive compulisive disorder)

Repetitive behaviors

Aggression and irritability

Mood swings

Self-injurious behaviors, such as picking at a sore 

Anxiety and general nervousness

Disrupted sleep

We have personal experience with all of the things on this list through our son, Logan.  He has exhibited all of these at one time or another.  

There are some people that are violently opposed to putting a young child on any kind of anti-psychotic medication.  There are many people who point out the risks of medicating children with drugs such as Risperdione and Naltrexone, because medicating children with these types of drugs is not an exact science.  Children change all the time. They grow, their weight changes, they may not respond to the medication the way that is expected.  And many of these medications have side affects such as weight gain, increased irritability, and eventually, tolerance.  This means that over time, the child will develop a tolerance to the drug and it ceases to be effective.  And some people believe that it's just plain wrong to give your kid a medication like that, and that a good ol' fashion whippin' will do the same thing.  These people are ignorant and have never had to raise a disabled child.

It's a difficult and sometimes heartbreaking conundrum.  Do I medicate my kid and watch him get heavier and perhaps, even , sit back while his personality changes?  Or do I not medicate him and watch while he beats his head against the wall or engages in multiple temper tantrums a day?  Which should I do?  I can try something else.  Perhaps change his diet.  Perhaps move out and separate him from his siblings.  Perhaps have him committed.  You see, folks, it's not that easy.  It's not like treating a bacterial infection.  "This medication isn't helping so I'm going to go back and get a different one."  It doesn't work that way.  There aren't many specialists in the state of Texas who will treat something like this.  A normal pediatrician, in my experience, hesitates to mess around  with these types of medications.  You can't call up the autism doctor and set up and appointment for your kid.  In the state of Texas, good help is hard to find if you're looking for someone who will evaluate your child and then recommend a medication that's appropriate for what he or she is going through.

In conclusion I will acknowledge that yes, there are side effects.  Yes, sometimes they are detrimental.  Yes, you should exercise extreme caution when choosing a medication for your child.  But you are also the only one who knows what is best for your child, and despite what other people may say, that is what you have to rely on.

No Room at the Inn

Do you remember that a couple of entries ago, I mentioned that we were going to get Logan re-evaluated?  The purpose of this was that it had been so long since his last evaluation, and this person we took him to said that she might have some ideas that could help him.  Well, today I met with this doctor and got the results back of Logan's evaluation.

And it said that Logan was autistic.

Ha!  Got you.  Of course he's autistic!  I won't go into all the details of this test.  Suffice it to say that no new information came up. What was incredibly sad, and incredibly frustrating, is that this doctor, who had said she had some ideas that could help us, changed her mind and told us that we needed to go to some outfit two hours away from us.  That they could do a bang-up job with our son, and that she wanted to "wait" on having him come to see her.  Oh, and by the way?  This other place does not accept insurance.  No big deal.  It will run us in the thousands.  When I got home I checked out the place she was talking about.  The word "autism" did not appear anywhere on their website.  We had been kindly shown the door and asked not to come back for a very long time.

I only feel mildly disappointed.  You see, this is the story in the state of Texas.  We hang out at the bottom of the pool when it comes to services for the mentally ill and developmentally delayed.  More often than not, people with a child like ours are pointed in one direction, and then another, and then another.  No one has the time or know-how to deal with someone who falls in the severe range of the autistic spectrum. Parents of autistic children knock on doors and are told, "We can't help you here, but maybe this other place can."  And it becomes a journey of nightmarish proportions that lasts a lifetime.

Why does Logan need to go?  You ask.  He's doing fine. He goes to school.  It's not that he NEEDS to go or something bad will happen.  It's that children like Logan do need a lot of extra help.  They have such a complexity of communication and  behavioral issues that finding someone who specializes in that is like searching for the holy grail...it's elusive, and legend tells that such a things exists.  It will take you forever to search for it, and you may never find it.  However, if you do, you better hold onto it because it may be the only one!

Did anything positive come out of this scenario?  One thing that I can tell.  In all the testing she came up with one thing that sticks with me:  Logan is happy at home.  Logan is most secure at home.  Logan wants mommy to play more.  And perhaps this much is true...perhaps no one can help him more than his family.

And that, at least, is something we CAN do.

I Ruin Pants.

Many children with autism display obsessive-compulsive tendencies, some to a greater degree than others.  These behaviors and tendencies may range from wanting to wear the same type of outfit or clothing every day, to needing to look up information about trains or cars or vacuum cleaners.  What happens when these behaviors are blocked and the child is not allowed satisfy their compulsions?  Frustration occurs.  Anger occurs.  Screaming, yelling, kicking, hitting,  tantrums, self-harm...I have seen it all.

Each child with autism is different.  They display traits that are similar but in different ways, and they don't all do the same things.  For my son, clothing is important.  It's important in the sense that he is very uncomfortable in long pants, especially rough materials like denim or anything with a tight waistband.  He would, if we allowed him, wear shorts year round, rain or sun, snow or sleet.  The temperature appears to make no difference to him.

Tomorrow it's supposed to get very cold here.  Logan's teacher, and myself, both talked with him and explained that tomorrow, he would have to wear long pants.  My big mistake was leaving a pile of laundry on the table!  We came home from school before leaving again to pick up my oldest daughter, and during the short time we were home,  he found a pair of scissors and a pair of cargo pants (one of the few pairs of long pants he owns) and proceeded to cut a hole in them!

He immediately told me what he had done.  He said, "I ruin pants."  He thought if he cut a hole in them, then he wouldn't have to wear them.  Knowing that he might have to wear those pants the next day upset him so much, that not only did he cut a hole in them, he began keening and hitting things (including himself) for the duration of the afternoon.  It's still going on as we speak.  Even after I removed all the laundry and told him the pants were gone, he was still upset.

This is an unvarnished truth about autism.  This is one of the not very pleasant facts of this life...that your child will ask you, over and over and over again to the point of exhaustion, for something he is fixated on. He will get angry and loud and destructive if his compulsions are frustrated.  And it will take him hours to calm down.

What does a parent do when their autistic child acts like this?  I don't know what other parents do.  I know what I used to do.  I used to get really angry. I used to yell at my kid.  I used to cry.  Now I just wait it out because if having Logan has taught me anything, it's that every trial is temporary, and this one, too, shall pass.  The other thing I do is just stick to my plan.  I move on to the next thing I was going to do.  It doesn't matter if he's screaming or not.  It doesn't matter if he's angry.  It's like shopping for groceries in a hurricane, people.  The wind may rage and the rain may pour but I'll be damned if I get cheated out of my trip to the store.

Don't Get All Emotional

One myth I seem to hear a lot of lately is that autistic children and adults do not show any emotion, or that they don't have any facial expression.  I've written about this before, but that was a while ago, and I feel the need to address it again.  Nothing could be further from the truth.  I can think of nothing more emotional than autism itself.

First we need to look at this myth and ask ourselves where it came from.  It's difficult to tell and we may never know.  It may have been born from an innate misunderstanding of ASD.  Early on autism was classified as "childhood schizophrenia".  That definition, coupled with glamorization from the media, painted a picture of autism that was highly inaccurate.  What kinds of pictures come into your head when someone mentions the word "autism"?  Do you imagine a head-banging, screaming child?  Do you imagine a poor little soul trapped in the depths of catatonia?  Do you picture a non-responsive dreamer who is replicating a Picasso with crayon on his living room wall?  All of these are aspects of autism but they are exceptions to the general rule.  The biggest challenge that autistic children deal with is the inability to communicate effectively.  Some of them, as I've mentioned many times, are non-verbal.  So getting their wants and needs addressed by their parents or teacher is an almost insurmountable challenge.  This begets frustration.  So much so that they may engage in behaviors that are odd and do not make any sense to anyone around them.  They scream a lot.  They scream in different ways for different reasons...out of pain, hunger, joy, fear, and sometimes, simply because the vibration of their vocal chords feels good to them.  They may keen and wail out of distress, or to drown out other noises that are bothering them.  Does this mean they do not display emotion?  No.  They are.  Some of them do it in a different way than you or I.

Several times a day, my son comes to me and proclaims that he loves me.  He is autistic.  He is an autistic child who hugs and kisses his mother and says, "I love you."  Sometimes he does this almost frantically...and what he is really saying is, "I feel insecure and I don't know how else to tell you except to say I love you over and over again."

Some autistic and Asperger's children do not have an emotional vocabulary, or they may display inappropriate emotions during certain situations.  For example.  You and I both know how to tell someone when we're angry, or sad.  We know the words for that.  We know what those words mean.  And we are able to distinguish between more complex emotions, such as, "I'm not angry, just disappointed."  "I'm not just happy, I'm overjoyed."  Autistic children don't have the words for this.  That doesn't mean they don't feel it.  They may laugh when they are, in fact, nervous or scared. or they may cry out of the blue for no reason.  This doesn't mean they don't show emotion or exhibit facial expressions.

Autistic children also have problems controlling their emotions.  When my son gets frustrated about something, he expresses it in a very big way. A small upset, such as not finding the shirt he wants to wear, can lead to a lot of screaming.  It is only because his world is ordered in a certain way, and when that order gets upset, so does he.  Boredom may elicit more screamng, or he may decide to poke his older brother over and over again.

In spite of all this, I have to say that in my own son at times I have seen an incredible sensitivity. There have been times when I have been rocked by emotion...upset by an event or some experience I had.  During these times he has quietly approached me and pushed my hair away from my face.  He has given me little kisses...different from the frantic, overwhelming ones he normally peppers me with...and whispered, "I love you."

Tell me again that they don't show emotions.  I will show you that you are wrong.

I Want To Do Everything.

Starting school again has been amazing.  It reminded me of just how much I love to learn new things.  The problem is...I want to do everything.

When I was growing up I had really grand plans.  I wanted to be a famous author.  I was going to go to college and major in music performance and play for a symphony.  And I was going to travel...to every country and every place I could possibly get to.

Life doesn't turn out the way we want to.  I'm still working on the author thing.  Music performance was something that happened for me, but in a different way than I imagined. My own daughter chose to play the flute this year...despite repeated assurances from me that it didn't matter what instrument she picked as long as she was happy with it.  She still chose the flute.  I feel like I came full circle the other day when she opened her book up and said, "Mom, I have to learn how to play this."  I looked.  It was one line of notes.  The title of it was "Hot Cross Buns".  I groaned.  When I was learning how to play, my mother made me practice for an hour each day after school.  For a novice player, this is a lot of time.  Your lungs aren't fully developed and it's extremely repetitive because you don't know all of the notes yet.  That song..."Hot Cross Buns"...I got so sick of that song.  And here was my daughter, practicing away...and although that symphony dream is still there, in the back of my head, I feel like I have been blessed.  Being able to watch my daughter discover this talent, and know how to help her if she needs it...that is priceless.

So here I am, going back to school, trying to stay focused because I find everything just so fascinating.  It would be so easy for me to get distracted and just start taking random classes, but I can't do that.  And it's frustrating because I know, in this life anyway, I will never have enough time to learn everything I want to learn and do all the things I want to do.

The other day a friend shared this quote with me, and now I'll share it with you:  "Live as if you were to die tomorrow.  Learn as if you were to live forever" -Mahatma Gandhi.

You're Hired!

This week I started editing an old resume I had in my files.  The thought had crossed my mind that it's always a good idea to keep an updated resume on hand, and so that's what I started doing.  Job searching for me at this point is laughable, because my schedule is already so packed.  As I researched different resume styles and the no-nos that come with sending out a contemporary resume, I started thinking about job descriptions.  We've all read those articles, where it details the all the different jobs that a mom does.  My own mother in law once kept a running tally for a month of all the things she did, then researched how much it would cost to hire those things out or pay to have them done.  The bill for one month of those services was staggering.

I realized when I was putting my resume together that I have such a mishmash of job experience that if I were to tell someone about it, they would probably screw up their face and say, What were you trying to do?

I'm not sure.  I was trying to live.  I can look back at the last fifteen years or more and say that I have done the following:  pharmacy technician (before they had to be licensed...scary!), file clerk in a real estate office, travel agent, clerk in a furniture store, salesperson for children's and women's clothing, carhop, reporter for local newspaper, clerk in a grocery distribution warehouse, realtor.

It was a little disheartening to put all of that together.  I never finished school, for a variety of reasons.  I went on to get married and have four kids.  Now I'm going back to finish, at the age of thirty nine, and I wonder, did I waste a bunch of time?  What could I have done differently?  And the answer I always come up with is nothing.  Circumstances being what they were at the time, there wasn't anything that could have been changed.  And so I had to conclude that what was the most important was the job description I have now, and if I included it on my resume it would go something like this:

Professional caretaker for special needs child, twenty four seven, seven days a week, barring when he's at school.  Personal advocate for special needs child.  Private teacher for thirteen year old boy, covering math, science, world studies, health, language arts, electronic media, art and religion. Professional caretaker for said boy, plus his two sisters.  Private flute teacher.  Private chef for busy family of six.  Accountant for family of six.  Bundle service (laundry).  Teacher for girls, age 12-13, Sundays and occasional Wednesdays.  House cleaning service, as needed.  Writer, musician, and jewelry craftswoman.  Activity planner and party planner for family of six.  Professional shopper (hey, for real..someone has to know a good sale when they see one!)

And so I wrote this down, and then I thought...I do a lot.

To all those moms out there...don't sell yourselves short.  Sometimes value isn't measured in dollars.

Around and Around and Up and Down

Yesterday I took Logan to another therapist that we found close by.  When I made the appointment, the receptionist suggested getting Logan re-evaluated.  I agreed.  It's been three years since his last evaluation.

What is the purpose of re-evaluating a child?  What can we expect from having this done for him yet again?  Besides filling out the now-familiar reams of paperwork and answering questions regarding his behavior and how he performs at school, what is the point? What can we expect at the end of it other than, "Your son is still autistic.  Surprise!"

I don't expect a different answer regarding Logan's diagnosis.  There are many autistic people who, as they mature, progress to the point where their symptoms all but disappear.  They learn to cope with the bombardment of stimuli that overwhelms them.  They begin to assimilate information at a faster rate. Then there are some that don't, who remain silent for all of their days, and who do not appear on any outward level to mature as far as learning or social skills are involved.

The fact of the matter is, what we know about autism changes all the time.  While a cure has not been discovered and may not ever be, there are better therapies for dealing with autism than existed five or ten years ago.  It's more widely understood.  And that is part of why we are taking Logan to be re-evaluated.

What was interesting to me was the way I, myself, dealt with this new visit to the doctor.  I found myself sitting on her couch as Logan played, reciting almost by rote the things that Logan does and the concerns I have about him.  I thought of the way it was three years ago when, at the age of six, we took him somewhere else.  At that time, I remember sitting more on the edge of my seat, nervous and anticipatory at the same time, thinking, this woman will help my son!  And she didn't.  She was able to test him and give us a concrete diagnosis, but beyond that, she had little to offer.  That was then.

Now I find myself proceeding with much more caution.  It's not that I'm jaded.  It's more like autism is a ferris wheel.  It's a ride, that's for sure.  I love ferris wheels.  I especially love when I'm at the top, and it stops for a minute or two, and I can see the horizon.  Autism is like that, for me.  There are times when I look at my son, and I enjoy my experience with him so much.  I can picture the years ahead and know that although there will be challenges, everything will be all right and it will work out.  Then there are times when it's still like a ferris wheel, but I'm at the bottom.  It's a never ending round of stimming, doctors visits, challenges, and waiting to get to the top again.  But that doesn't mean I want to get off the ride.  Will this new doctor give us something helpful for Logan?  A new therapy or a way to help him cope with sensory overstimulation?  I don't know.  I hope so.

I went to the Texas State Fair once.  I went with a date from high school, and I can say that I never went anywhere with that particular individual again.  We had nothing in common.  We went to ride a ferris wheel.  Not the giant one that the fair is famous for, but a smaller one.  At first the ride was enjoyable.  But then the man operating the wheel wouldn't let us off!  He let other people leave, but not us.  He put a child on the seat with us.  She sat in between us and as the ride progressed around yet again, she began to complain about feeling sick and said she needed to throw up.  We were more desperate than ever to get off that ride!  We finally were allowed to leave...after half an hour of being stuck on that wheel.

Now, had I been stuck on that wheel with, say, the person I'm married to now, or one of my best friends, then I don't think I would have minded so much.  We would have laughed about it.  We would have found things to look at and talk about.  Sometimes it's all in who you share the ride with, and I am more thankful than ever for all the friends and family that are part of mine and my son's life.