Tuesday, May 31, 2011

O.I.L.H.I.T.

My husband has often made jokes about buying our son a human sized "hamster wheel".  He is so full of energy and so strong that he "acts as if driven by a motor".  (This question was on one of the parent questionnaires we had to fill out.  Does your son act as if driven by a motor?  Um, yeah.)

These jokes go along with the other ones he makes about the Wall of Velcro (see a previous post) and Valium patches for kids (seriously, that IS a joke.  They don't make such a thing.  If they did, we would know about it!)

So, today I went to a local outlet store.  I like this store, even though it smells strange (not bad, just strange).  They have clothes and shoes in there, and little knick knacks, and toys.  Imagine my amazement when I looked at the toys and found a giant, hollow inflatable ball.  It's constructed so that a child over the age of five can get inside it and roll around.  I didn't care how much it was.  I bought it.  (It wasn't THAT much).  So, when my husband gets home, Operation Insert Logan into Hollow Inflatable Thingy (OILHIT) will commence!  Of course, I will write about this very unique experience and let you all know how it goes.

The other endearing thing that has happened recently is that Logan has started singing.  He likes music.  His former Sunday school teacher at church, who we love and adore and works at a local theater, would sit right next to the piano with Logan and told us that occasionally, Logan would be right  on pitch.  As time went on he would try to sing different things, his favorite song being "November Rain" by Guns N Roses.  (Imagine a seven year old belting out:  Don't ya think that ya need somebody?  Don't ya think that ya need someone?)

So, yesterday evening, I'm sitting in the other room and Logan starts singing, "Here comes a tickle spider walking the road!  Gonna get your tummy!  Hi-ho the derry-O!  Tickle spider walking!  Tummy!  Walking the road!"  He was yelling this at the top of his lungs.  The "tickle spider" song is something I made up when the kids were little and he has remembered it all this time.  Which brings me to this other point, about Logan, and a lot of other children like him:  Their memories are phenomenal.  Logan remembers everything. A childhood playmate he had when he was two or three.  Where he stashed a shirt two weeks ago.  The name of a teacher he hasn't seen for a year.  I also have a dear friend whose nephew is autistic.  This child has a photographic memory.  He sees something, his brain takes a picture.  I sometimes think that if autistic individuals could talk, we would all learn so much...things we never dreamed.  In the meantime, I look forward to operation OILHIT...I do hope it's a success.

Sunday, May 29, 2011

This Is Autism

Have you ever done the following:

Sat on your bed and tried to paint your toenails while your seven year old rolls around and giggles and proclaims:  I want to go to sleep! (It can be done. You learn something new every day.)

Carried a child out of a church building while they are passing the sacrament (bread and water) while the child yells, "Hoo hoo hoo, monkey, monkey, monkey!!!"

Been whipped on your bare arm with a rubber snake because your child "earned" it as a prize at school.

Tried to speak to office staff at your child's school only to have your child blow a raspberry at them and state, "I want to go home."

Have your child pull on you and hit the sides of the buggy and throw a fit because you are at Wal Mart and they want you to buy...drumroll please...plastic PVC pipe from the plumbing section.

Put a ladder up against your backyard shed...not so you can get to the top of it, but so your kid can climb down off of it.  More than once.

Ran out of spices in your kitchen because your son decided to "cook".

Put a lock on every single window and door in your house.  Not to keep people out. To keep your son in.


Gone to bed completely and utterly exhausted and thought, I can't do this anymore.

Woken up in the morning and thought, This will be a piece of cake.

Looked up at heaven and said, Why me?

Looked up at heaven and said, Thank you for giving him to me to take care of.

Rejoiced because your son said the word, Yes and the word No.

Experienced joy because your son kissed you on the cheek and said, I wuv you...voluntarily, for the first time in years.

Gone up to a school and raised Cain because your son was not being treated right.

Written a letter to the school because you were so impressed with how your son was treated.

Owned at least ten vacuum cleaners.

Given your child six baths in one day.

Thought, to heck with it, and didn't clean your house for a month.

Thought, I can do better than this and cleaned it every day.

Watched the same documentary, every night for two months because it's the only thing your son will watch and it makes him go to sleep.

Gone into a health food store and asked for a valium supplement for your son because you are desperate and you know they sell such a thing.  Had the store clerk look at you with pity while you struggle with your child and say, "I think you need it."

Thought you would, literally, go insane.

Figured if you haven't gone insane by now, then it isn't going to happen anytime soon.

Looked at your child and thought, if he makes that noise, or does that thing, or pulls on me, or climbs on me one more time, I don't know what I'm going to do.

Looked at your child while he's asleep and thought, I have never seen anything so perfect.

Thanked God every day for the things your son teaches you, and prayed that you will have something to teach him.

This is autism.

By The Ankles

Yesterday I had to run an errand and go up to our church for something.  I took ALL the kids with me (plus one extra) hoping to give my husband a much-needed break.

We got to the church building and it soon became apparent that Logan was not going to be able to stay there.  A meeting was about to take place that I had no prior knowledge of.  My plans to occupy the children in the cultural hall while our extra child did what she needed to do fell apart.  Mostly because the extra meeting was a baptism, and in order to do a baptism, you have to take at least an hour ahead of time to fill up the baptismal font.  It's like a giant bathtub.  And Logan loves it and is fascinated with it.  When his older sister got baptized, he talked for weeks afterward about "going swimming at church".  So I knew we had to leave.  I had visions of him doing a belly flop into that water and that would just take the cake, would it not?

So I told him it was time to go and he didn't want to.  He immediately crouched down on the floor.  He wouldn't budge.  He almost yanked my arm out of its socket.  Then he laid down on the floor and stared at the ceiling.  I shrugged my shoulders, grabbed his ankles, and gently pulled him out the door.  He said, "I'm scared."  I said, "Yeah, sugar, you should be!"  But we got him home and all was fine.

We often have this difficulty with him at church.  The music is too loud, or there are too many people, or he wants to hole up in the custodial closet and study all the vacuum cleaners.  When we left church today he suddenly said, "I want go back to church."  I was surprised.  So I said, "Okay, but you have to be good."

The first place he went when we got in there was that closet.  I said, "We didn't come back here for you to come in this closet.  If we're going to be here, you have to go to class."

"Class is dead." (When Logan doesn't want to do something, he says it's "dead".)

"Well, it's not dead, and we are going to go home."  I walked down the hall.  By this time I was carrying him.

Desperately he grabbed my face and squeezed my lips together.  I really hate it when he does this.  I look like a fish.

"I want to go to Primary."  Okay.  Primary is our children's Sunday school program.  We walked down the hall to the Primary room.  But he suddenly he said, "I want a drink."

Oddly enough, the Primary room lies in the direction of the custodial closet, and the water fountain is actually beyond that, right next to said closet.  He was leading me closer and closer to the vacuums without asking to go into that closet, since I had already said no.

We're sorry, Mrs. Stogner, but your son is mentally deficient.


Yeah.

Friday, May 27, 2011

Rattling Cages

Okay, I really have no idea what to write about tonight, dear folks of the blog community.  So I will just tell you what he, the autistic wonder boy of the Stogner family, did, and you can read it and say, I'm glad I'm not the only one, or Better you than me, or Why doesn't that woman get off the computer and do something?

Logan likes to push buttons.  Our buttons, to be more precise.  He doesn't do well with changes.  For instance, if someone has been gone all day and then they come home, it sparks a flurry of bad behavior from him.  We call this "no-no mode" in our house..I.E.:  "Logan is in no-no mode".

No-no mode involves lovely activities such as the follow:  banging things against the floor, walls, furniture and windows.  Wetting globs of toilet paper in the sink and throwing them up in the air so they stick to the ceiling.  Climbing on places he's not supposed to climb.  Climbing on mommy's back and saying, "I want to ride showldurrs"  and me saying, "God help me".  Grabbing mommy around the waist and laughing maniacally. Tackling his brother onto the couch.  Chasing his sister into her bedroom.  Being put in time out repeatedly and screeching at the top of his lungs like a bird because he doesn't want to be there.  Five minutes have now gone by.

My mother used to shake her head and say, "I don't know how you do it."  or "What are you going to do?"

Why, go criminally insane, mother.  It's all part of the plan.

Seriously, how do we deal with such behavior?  I will tell you how we try NOT to deal with it:  We try not to lose our cool.  There is a reason why he does this stuff.  He's hungry. He's tired.  His stomach is upset.  He needs attention.  Whatever.  And the only way he knows to get what he needs is to act this way.  It's like someone turning cartwheels and saying, "Look at ME!  Look AT ME!!!!"  That's what he's doing.  He's rattling our cages and if we roar and take a swipe at him, so what, he got something from it.  Who cares if it was good or bad, is his philosophy.  

It works the best to stay calm, and be patient.  Do we always do this?  No.  We are not computers running a program.  We get tired, we get impatient, and we get really, really tired of having the furniture pounded on and being climbed on.  Is it better than it used to be?  Yes.  Do I think it will continue to improve?  Yes.  And what if it doesn't?  I can always take my friend Caroline's route and say, "Give me a *&(*(*g Xanax!"  

Or we could do the Wall of Velcro.  This is my husband's idea.  We will get some military grade Velcro and put it on the wall.  We will then put some on our children's clothing.  When they get annoying, we will stick them on the Wall of Velcro until they can behave.  It's worth considering.


Wednesday, May 25, 2011

Myth Number 3: They Are Just Really Hyper.

On Sunday, someone spoke in our church about not judging others.  He went on to say that all of us have to form "intermediate judgements", but that final judgements should be left up to God.

I think what he was trying to say was that in our everyday lives, when we come into contact with people, we have to form opinions about them.  Is this a person with whom I want to have contact on a regular basis?  Is this a friend my child should have?  Etc, etc.  But he also said something else interesting:  Judge the circumstances, not the person.

This is so hard to do, sometimes.  We see something, and it appears to be inexcusable.  We draw conclusions from it.  It's human nature.  But what if.  What if what you are seeing is not how it really is.  What if there is a reason for that person's behavior, or lack of communication, or rudeness.  Can we excuse the behavior then?  Well, people shouldn't be rude, and people should curb their anger...but could understanding the reason behind what they do perhaps help us all to be more compassionate and forgiving?

Why am I even writing about this?  Before I had Logan, I was what I consider a "normal mom".  I had two kids, seventeen months apart.  I ran errands, cleaned my house, had a lot of friends (still do), and life was just...life.  If I went into a store and I saw another child misbehaving or wreaking havoc, I would think this (and I am embarrassed to admit this, but I also know I am not the only one who has done it):  What is wrong with that kid?  Why won't that mom step in and do something?  Why is she letting her son/daughter be so whiny and misbehave so much?


I don't think that way anymore.  I mentioned that having a special-needs child gives you a certain perspective.

I was in a Wal-Mart a few months back, and I think I had my older son with me.  Suddenly there was a piercing scream, and a little boy started bellowing, "Mommy, Mommy, stop, ow, you broke my arm!  You broke my arm!"  His screams and yells were so loud, and so berserk, that several people in the store stopped what they were doing and stared.  The mother took the little boy in her arms and quickly made her way to the restroom.

Of course, I followed her.  (sheepish grin)

She took him into the handicapped stall where he proceeded to indulge in a world-class meltdown.  I don't think she knew I was in there at first.  She never raised her voice.  She calmly asked him to stop crying.  She kept speaking to him in soothing tones.  I recognized it for what it was:  a temper tantrum.  An out-of-control, over-sensitive child who could not get a handle on himself.  I quietly asked her if she needed some help and she thanked me and said she was fine.  I left.

It looked horrible.  A mother who had possibly abused her son right there in Wal-Mart.  But it wasn't what it looked like.  His arm wasn't broken.  I don't know what sparked his outrage, but it wasn't an enraged mother who had taken her anger out on him.

There have been many times when I took Logan out to the store or to a restaurant and my timing was off.  He was too tired or he hadn't had enough to eat, or he was just overstimulated already.  And he is an expert, just like that other little boy, at bellowing at the top of his lungs over and over, of reaching out and grabbing things he shouldn't, and just being a pill in general when he doesn't want to do something.  I once took him to a grocery store and he didn't want to be there.  But I really had to pick something up, and I thought, We'll be in and out, no problem. Heh.  Well, in the checkout line, he jumped.  He jumped up high enough that he could grab the large, dangling cardboard sign that was advertising a store promotion.  And it fell.  Off the ceiling.  People stared (it's rude to stare!) and the checkout girl smiled at me and said in a sweet voice, "Is he just really hyper?"  I looked at her and responded in the same tone, "Why, yes." (No, he really likes that sign, hanging from the ceiling, and he wants to take it home with him.  Here is your sign. Thank you, Jeff Foxworthy.)

So, now, when I go to the store, or somewhere else, if I see a kid acting like that, even if they appear to be the worst kind of brat imaginable, I hold off on getting angry or making snap judgments about the parents.  You don't know what that kid may have been through that day.  You don't know what the parents may be going through, every day.  And it's really better to take care of your own and make sure you are doing right by your own than to make it your business to label other people, weigh them, measure them, and find them wanting.  Because we can all be found wanting, in some regard.

Tuesday, May 24, 2011

The Other Side of the Coin

Wow, I AM prolific tonight!  I just re-read my post "What Would Einstein Do", and I have to add something to that.

While I think the testing scenario that Logan went through was a little pointless, I don't wish at all to discourage people from putting their children through testing.  The other side of this coin is that this way of diagnosing children for autism or other disorders is all that we have at this present time. Hence my previous remark about "the dark ages".  There is so much about spectrum disorders that we simply do not know or are just beginning to understand. And what we DO have is a comparison approach.  Can we get Logan to do this thing or answer this question?  Scientifically speaking, if he can't or won't do these things, we must assume that he is mentally deficient.  Yes, there may be information locked in his head and he may actually be working out complicated math formulas as we speak while watching Curious George at the same time (yes, it can be done), but we have to go with what we see, and what we see is that he cannot do A, B, and C.

The point I was trying to make earlier is that there simply must be a better way to go about it.  Until the powers that be come up with that better way, I do applaud physicians everywhere who reach out to families like ours and use the knowledge they do have to improve the lives of  our children.

Can you tell we have a lawyer in the family?

After diagnosis the next best thing you can do is some forms of therapy. However, dear readers, this mom has done the following today:  taken four kids to school and picked up five. (I always end up with extra kids in the van.  I don't know how it happens.  And I don't care.  We live in a great neighborhood and my kids have a lot of friends.  They all understand Logan and "get" him.) I have visited a sick relative.  Packed up an apartment (not finished yet).  Returned phone calls.  Cleaned up a filthy dog.  Watched said dog gaze around the house in wonder with a "retarded"  look on his face because I finally trimmed the hair out of his eyes and he can see.  Broken up a fight between two siblings.  Paid a trip to the mall.  Paid another trip to a craft store.  Cooked dinner.  Ate too much ice cream.  And now it's about to tornado or something outside, whatever, all hell is about to break loose, and it's all good.  Maybe we'll get to talk about emergency preparedness in the hall bathroom at three am again if the sirens go off.  Goody.

What Would Einstein Do

Today, I was going to write about something like some of the other disabilities that can come with autism, or explain what an ARD meeting is, or something like that, but to be perfectly honest, faithful readers, I am way. Too.  Tired.

I can hear (one) of my father-in-law's voices in my head right now:  You have to take care of yourself.  If you don't take care of yourself you can't take care of your kiddos.  If you were in a plane and it was going down and the oxygen masks deployed, who would you put it on first?  You would put it on you first, so that you would be awake and alert enough to be there for your kids.


I can't count the number of times he said this to me.  When you're a mom, and you get busy, you think, yeah, yeah...I don't have time to eat, or take a nap, or whatever...and sometimes you don't.  You get wrapped up in so many things and you forget about some stuff you always meant to do, and you decide that the leftover mac and cheese looks absolutely divine when you're running short on time for dinner.  Pretty soon you feel really crummy, tired, and then the crankiness sets in. Or worse.

It's hard for people to understand what a family can go through when you have a special needs child.  Normal parenting requires a lot of time and patience.  It requires a lot of sacrifice and you learn how to deal with frustration and anger and disappointment.  There are also moments when you realize the person receiving that award, or spiking that ball, or acing that test...hey, they are here because of you, and that person running around with your DNA is going to grow up to be somebody someday.  Having a special needs child-autistic or otherwise...requires a little more.  You give up a lot.  You lose expectations of how your life was going to be.  You gain a different perspective.

I won't go into all the boring details of the two days of testing we endured with Logan.  Basically he was in a room with a diagnostician.  We were disappointed to learn an intern would be testing our son and not the actual doctor we had spoken with.  The room had different things in it...toys, books, blocks, etc.  And she would ask Logan to do different things.  Perform certain tasks.  She would observe him playing.  And here is what was concluded:

Severe autism, speech disorder, and mental retardation.

And here is where I sincerely and honestly believe we are still in the dark ages when it comes to autism.  We don't know what causes it or why it happens.  There are all kinds of theories.  But there is one solid fact about autistic children that is true across the board:  they thrive in structured environments.  They are most secure when they know what to expect and when.  They need thousands of times more reassurance than a normal, well-adjusted child.  So you are going to take this child, who is prone to anxiety, aggression, temper tantrums, defiance, who cannot tell you if he is mad or sad or uncomfortable...and you are going to put him in an unfamiliar environment with an unfamiliar person that he has never met before and have him stay there half the day, and ask him to perform a variety of tasks that he does not normally perform on a day to day basis.

Lots of people think Einstein had some form of autism and it doesn't take an Einstein to figure out that the above scenario is a flaming bunch of B.S.  I contend that if you want to really know what makes a child like this tick, then you need to observe the child, at home, in their normal routine; get to know the child, and spend more than eight to ten hours trying to reason out responses from a kid who probably doesn't want to be there in the first place.

Am I touchy because someone said my son was mentally retarded?  Perhaps.  Yes.  No one ever wants to hear THAT about their own kid.  I really like the way our diagnostician at the school put it:  That their test showed that he was academically deficient, but that they did not believe that was true.  Their belief was that there was a lot locked in that head of his, but that they had to go by what he chose to present to them.  The GOOD thing about going to that particular doctor was that finally, finally we had an answer to the question:  is our son autistic?  And the answer was:  Yes.  So we knew what we were dealing with and we could go to the school and definitively say, this is what the deal is.  Help us.  And they have.  Except for one unfortunate year when he had a teacher that was very ill-suited to working with him, he has had an exceptional time in our ISD.  And it has always been because the classroom was super-organized, the schedule was planned...sometimes down to the minute, literally, and his teachers were unfailingly patient.  If they dreaded dealing with him one day, if they just didn't feel like handling my rambunctious boy one morning when they came into work, I never knew about it.  They have and always have greeted him with a smile on their faces and a willingness to do whatever it took to make things happen for him.

So, do I think my son is "mentally retarded"? Well, I have to say, first of all, that I really don't like that phrase, applied to anyone.  What do you picture when you say the word "retarded"?  Something slow and stupid and dumb, something not worth your time, something that is silly and needs to be made fun of.  Isn't it a common practice to say, "This is so retarded" or "You're retarded".  It's become a mild, playful insult or a semi-polite jab at our friends.  So, no, I don't think Logan is "retarded".  Do I think that he has a lot of information locked in his brain that he can't get out due to his deficiency in communication?  Yes.  Do I think that he finds creative ways to cope with things that may seem strange to other people?  Yes. Do I think he avoids work at school and home because he does not see the value or reason behind learning how to write letters and numbers?  Yes.  Logan has always done everything on his own terms.  Do I believe that one day, he will walk into the room and sit down and say, "Hello mother, how are you this fine afternoon?"  Hell, no.  But if he did, I would be cool with that.

Monday, May 23, 2011

Getting the Answer(s)

Logan had been at school almost three years.  We were still searching for a final answer.  By this time I was familiar with ARD meetings, parent/teacher conferences, how to diffuse a tantrum, what kind of things would overstimulate my child, and on and on.  I was fairly certain by this point that Logan was indeed autistic.  When you have a child with behavioral, emotional, and mental challenges, you read.  A lot.  You look for answers.  You search the web.  And you draw conclusions.

We were done with the Child Study Center.  Our experience there, while providing us with a path to follow, had soured us on ever going there again.  Now, allow me to say here that I'm sure there are many families and many children who have found what they were looking for when they walked through its doors.  It just wasn't the right place for us.

We ended up finding a doctor through Cook Children Mental Health.  The doctor there was much more approachable.  She asked a lot of questions but it was more of a conversation than a verbal form we had to fill in.  She asked us all about the challenges we faced with our son and decided that he would undergo two days of behavioral testing.  They would ask him to do certain things or perform certain tasks, and draw conclusions from that.

This visit with this doctor was a real eye opener for me, and not just because of my son. She took a family medical history from us...wanted to know if anyone had a history of depression, or behavioral problems, etc.  We were halfway through this somewhat awkward conversation when my husband looks at me and says, "What about your dad?  Wasn't he kind of weird?"

I mean no disrespect to the dead.  I loved my father.  I still do.  But weird is a good word for what he was.

He was brilliant.  He was an electrical engineer who designed substations and did some of the designing for Comanche Peak Nuclear Power Plant.  From the time I was very small I remember him sitting at his desk, drawing out a set of plans and every now and then, whooping at the Dallas Cowboys.  He loved his work.  And he loved the Cowboys.

But there were other things.  He liked to drum on the furniture, or the steering wheel.  I thought it was because he used to play the drums in high school, but it was a habit he never lost.  He buried himself in the tv, computer, and the newspaper.  He avoided personal, direct conversation at all costs.   Put him in a social situation, ask him about himself or try to make small talk with him, and you would get three answers:  "Well", "Huh", and "I don't know".  He also mixed his words up on purpose:  "Sleeping beauty"  became "Beeping Sleuty", for example.  He made funny clicking noises or ticking noises.  Ask him about work and about what his latest project was and he came to life.

I related all this to the doctor and she laughed.  "Well, sweetie, that's significant."  And I suddenly realized...this father, who I loved, who inexplicably left our family right after I graduated high school and could never really explain to us why he wanted to go...this father who was so difficult to know and nail down...could it be that he just couldn't help it?  Was he so challenged, socially and emotionally, because he had some form of autism or Asperger's that was never diagnosed?  He was born in the late forties.  Autism was unheard of then...so was Asperger's.  A child with these challenges had a hard row to hoe back then.  It's hard enough now.  Realizing that the issues I had with my father, the frustration at never being able to be close to him, might not be my fault or his was an epiphany I did not expect to receive that day.  Listening to that doctor and the questions she asked...suddenly all of my dad's behaviors made sense.  I was searching for a way to help my son and I had found the answer to a question that had haunted me all of my life:  Why?  Why did my dad act the way he did?  Why didn't he try to be closer to us?  Why couldn't he hold a normal conversation? Why did he make those noises?

It felt like a huge burden had been lifted off my shoulders that day.  I was there for Logan, but I found Dad.  And I couldn't  help but wish that he was there.  I always felt, and still feel, that he would have understood Logan on a different level than the rest of us.

That being said, we still had two days of testing to go through with our little guy, and my husband was the lottery winner for that scenario.  And I learned after that testing session that some of what doctors may tell you is true, and some of it is totally bogus. And it's up to you, as the mom or the dad or whatever you are to your child, in the end, to listen to your gut and not take everything people say about your kid as gospel truth.

Sunday, May 22, 2011

Rocking On

Onward and upward.

Like I said...the experience with Dr. Haber did open doors for us.  But I felt like we still weren't there yet.  We met with the special ed department at our local ISD and they did an assessment of our son, determined he definitely had speech issues, and so he started going to school there half a day.

We were really blessed in that regard.  He had a wonderful teacher who I am still in touch with today, and she had two paraprofessionals that were equally awesome.  She was patient, she was kind, and she accepted Logan for who he was while still setting goals for him to meet.  I saw a lot of progress with him while he was with her, and that semester (he actually started in November) with her turned into a whole extra school year.  She was just the right person to teach Logan at that time, and I was, and still am grateful to her and the two assistants that worked with him

I have to also be honest and say that I needed him to go to school.  I needed a break.  His speech wasn't very developed yet at all, and he would become easily frustrated when he was overstimulated or when he wanted something and we couldn't understand what it was.  Imagine that you have a headache or a toothache, or that you're craving a particular food, but you can't tell anyone, and there's no way for you to remedy it yourself.  That's how it was for him, and for a lot of autistic children.  So he would become frustrated and he would hit.  He would hit me, he would hit his brother and sister, and he would try to harm himself.  He would hit his head on the wall-on purpose, scratch himself, and hit himself.  He would throw things.  And he would do this several times a day.  It was driving me crazy.  I was frustrated and scared and in the beginning, when he would hit me, sometimes I would just burst out crying.  I was exhausted.  I didn't understand my son or why he was doing the things he was doing, and if he was hitting his own mother, then on some crazy level I thought I was failing. There were days when I thought my son was totally alienated from me and I just didn't know what to do.  So I had to come up with ways to calm him down.

One of the biggest mistakes parents make with autistic children is yelling.  We've all done it.  It comes from the frustration and utter helplessness you feel sometimes.  Sometimes it seemed like once I had one behavior under control with him, he would come up with a whole new and even more obnoxious one.  It was impossible, almost, to take him to a store.  There were too many people, too much noise, and too much to look at.  He couldn't handle it, so he would yell in the store and try to climb out of the buggy.  The stares I would get.  I still get them when he has a bad day but now I just think, well.  It's rude to stare. And this store appears to be full of rude people.

But, anyhow, you can't yell.  Yelling alienates the kid and it's scary, and it jacks up their anxiety levels...a LOT.  And yes, I'm preaching to myself as much as anyone else.  I'm not perfect.  We're all works in progress.  But it reminds me of the time my husband went to Lowe's.  We were thinking of putting an actual door in the kitchen entryway (having grown tired of our elaborate baby-gate system), and he patiently explained to the door guy at Lowe's what kind of door he wanted and why.  The man listened for a minute and said, "Oh, that will never hold him.  I have a ten year old autistic son, and I know."  He went on to talk about his son for a moment, and revealed that he had just potty trained.  At age ten.  We were still working on it with Logan.  And I can't tell you how relieved it made me feel to hear that another parent had similar issues...it was like a breath of fresh air.  Yes, we go through this too.  It's not just you. He also told us, "You can't yell at them.  Once you yell, you've lost them." And it was true.


So, at all costs, remain calm.  Famous last words.  Keep calm and carry on.  Keep calm and rock on.  What fresh hell is this.  Bloody hell, we're all buggered now.  Whatever works for you, know what I'm saying?

So I had to find a way to calm him down, or someone was either going to go insane or get seriously injured.  So I gave him a bath.

I mentioned his fascination with water.  It's tempered a bit as he's gotten older, but then, he couldn't get enough of it.  I would fill up the tub and he would stay in there until he resembled a shriveled little peach.  He would float in there.  And here's the thing.  Anytime he wanted a bath, anytime I thought he needed to calm down, he got a bath.  If it was five, ten times a day, we did it.  And that's what you have to do.  Every conventional rule you have, every preconception about parenting...forget all that, if you have an autistic child.  Some of the rules just no longer apply.  Some rules are made to be broken and some rules are nonsensical in the first place.

The other thing was Logan's clothes.  He has a fixation on clothes...most of the time, they have to match, or be all the same color.  At the same time he had his water fixation he also had a "camouflage" fixation.  He loved to wear camouflage clothes, and so it seemed like we were recycling the same three outfits every day (we were).  And woe unto me if those things weren't clean (or clean enough) for him to wear!  A meltdown would ensue, a lot of arm-pulling and hitting and just plain put-outedness.  It's not as much an issue now.  He still has his favorite outfits and every now and then, he gets fixated on one.  But his communication has improved enough that I can convince him (after repeating myself over and over and showing him the empty washer over and over) that that outfit is not clean, or that he actually grew out of it a year ago, and it's gone or not usable.

So now I have people who come to me and say, "Wow, Rachel, you are like, the most laid back person ever."  And I think, Wow, I learned the hard way.  I was forced to let go of so many things and so many little issues that some people have.  And I don't miss being that way.  I don't miss being that mom who had to have everything perfect or that mom who signs her children up for fifty things or that mom who aspires to homemaking of Martha Stewart-like proportions.  I'm not Paula Deen and I'm not Candace Olsen.  I'm not famous and I'm not rich...but I know who I am and what I love and the most important thing I will ever, ever do in this life is raise these three kids.

Saturday, May 21, 2011

Pissin' In the Wind

Someone pointed out to me today:  "You didn't write anything yesterday."  "Yes I did."  "No, you didn't."  "I'm sure I did."  But they were right and I didn't post anything yesterday.  Sometimes, everything just kind of blends together.  Know what I mean?

We do not have a magazine-perfect home.  I laugh when I think of how I was when I got married. I had all kinds of ideas about the kind of house I wanted and what I wanted it to look like, and I was an HGTV addict.  I loved hanging things on the walls and repainting rooms and finding just the right combination of things to display on a shelf.  I loved nesting.


Well, our nest these days is a little tattered.  There are a few pictures on the walls. (Those are the ones Logan hasn't knocked off yet).  We did paint, one time.  I don't want to do it again for a while.  We put in tile and wood floors and once, in a fit of ambitious determination, I hand-plastered the kitchen walls and painted it a mossy green color.  That's about it.  The furniture has seen better days and so has my sense of style.  And there was a time when a situation like this would just bother me, for days on end.  I would stress about it.  I would go to a friend's house who did not have children or whose children were older and come home and think, wow.  I have a long way to go.

So here's the thing:  I don't care anymore.  I don't.  All that stuff...the pretty furniture and the paint and the throw pillows and art prints, etc...I know there's a point in my life where I'll be able to have those things again.  Right now, I do good to put the laundry away!

Some of you may be confused about why this is even an issue.  Some autistic children...or just some children, they don't have to be autistic...can be hard on your house.  A lot of autistic children fixate on things...cars, or computers, or washing machines.  In Logan's case, he has two great loves:  vacuum cleaners and water.  Not together.  Just those two things.  He'll play with other things, like little action figures or flip through a picture book...but those two things are a very big deal in his world.  I have lost count of the number of vacuums we have.  Some of them are ones he created out of ordinary household objects.  Others are from thrift stores or ones we just bought.  It's a collection.

The water is a different issue.  When he was three or four, he figured out how to climb on the kitchen counter. I would find him in there, sitting in the kitchen sink in his clothes, soaking wet, and spraying water everywhere with the sprayer.  I could get him down from there, twenty, thirty, fifty times...it didn't matter.  He would always go back to it.  Eventually we bought two wooden-framed baby gates and blocked up the kitchen entrance.  People would come over and bring their kids to play and be totally weirded out by our gated and barred kitchen.  "Who's going to go in the kitchen?"  "Why is that like that?"  And even after I explained it to them, it was obvious that some of them didn't get it.  I mean, I should just be able to tell Logan "no" and put him in time out or something, right?  Ha.

He played with water in the bathroom, too, and we ended up with water damage in there and in the kitchen.  He used to tantrum a lot when he was smaller and we do have holes in the walls from the time he shook the stationary bike so hard it damaged the dry wall.  We have scars on the floor from furniture he dragged, or picked up and down and slammed against the wood. (Yes, he is that strong.)

So someone asked me the other day if I had finished remodeling my kitchen.  At first I didn't know what she was talking about.  Then I remembered that a long time ago, I had been gung-ho to transform it into this cute, cottage-y little nook that was a joy to work in.  I laughed.  I explained that it was mostly done but that I just didn't even have time to think about it anymore.  My friend laughed too and said, "Sometimes you don't have enough time even to worry about things," or something like that.  She was right.

So I try to concentrate on what's really important.  I try to keep the CDC at bay by keeping the house presentable.  I try to spend time with my kids and put some time into my real estate career.  I spend time with my friends and I don't know what I'd do without them. I make time to spend with my husband. And I forgive myself.

Why do I need to forgive myself?  What did I do?  Well, I forgive myself if I don't get the laundry done.  I forgive myself if I didn't get the bathroom clean.  I forgive myself if we eat fast food for the third night in a row, or if I didn't call that person back, or if I notice a layer of dust on some shelf that hasn't seen the light of day.  Because it doesn't matter.  Logan matters.  My other two children matter.  My husband and the rest of my family matter. The rest will get done.  I think the biggest mistake mothers make, and not just mothers of special-needs children but all moms, everywhere...the person we expect the most from is ourselves, and if we don't live up to the standard we set for ourselves, then no one punishes us more or gives a harder time than ourselves.

It's like the conversation I had with my friend Caroline one time:

Caroline:  "Girl, what'd you do today?"
Me:  "I was going to clean the house, but I just didn't want to."
Caroline:  "Ain't no point worrying 'bout that....You're just pissin' in the wind, sometimes."

It is important to do those mundane things...clean the house, buy the groceries, fold the laundry...but it's even more important to stay sane.  And that, dear friends, is a full-time job around here!

Thursday, May 19, 2011

We Were Supposed to be Impressed.

What do you do when you suspect your child has autism?  Where do you go, who do you call, who do you tell (or not tell)?  You know little if nothing about it.  You did not plan for this.  There is no rule book.  There is no map. You have to make it up as you go along.  It's your own first-person shooter, with the world creating itself while you move through this alien landscape, not knowing if you're going to fall through the earth with each step you take or get a 1-Up and tread with confidence.

The first and only place I could think of to take Logan to was the Child Study Center in Ft Worth.  The Child Study Center treats all kinds of developmental and behavioral complications in children, so I thought it was a good place to start.  My husband dislikes this place for reasons I will not go into, but he also knew we had to do something, so he was on board with it.  I called.  I was told to fill out an over-the-phone application.  I did.  I was told the wait would be a month or so.

I did not wait a month.  I waited months. Meanwhile, Logan was losing progress with each passing day.  I called them back.  Twice.  Was told that the person I was going to see was out on maternity leave and something had happened, blah blah blah, which translated to:  You got lost in the system.

We finally got an appointment with Dr. Julian S. Haber.  Very good with the little ones, we were told.  Excellent doctor.  I was excited and happy and yes, naive.  This man would fix all our problems.  Right?

The first wake-up call came when we walked into his office and saw a set of books, lying flat on his desk, precisely lined up so that the person opposite the desk could read the titles and authors.  Make that author, singular.  They were all by him.

We were supposed to be impressed.  Instead we were amused...by this obvious need for admiration, by his attempts at impressing any set of parents who walked through his doors, and by his obvious concern that he be thought highly of by anyone he dealt with.  I was not impressed.  Our amusement quickly turned to irritation when we spent a lot of time answering a lot of questions while our son was spirited away into another room to do who knew what.  The ultimate caveat came when he left to "examine" our son and returned a scant ten minutes later.  He informed us that our son had the following:  mixed language disorder, ad/hd, sensory integration dysfunction,and possible severe autism.  He was also the one that ordered the MRI, the ABR, and the EEG. He scribbled his prognosis on a piece of scrap paper and sent us on our way.  We later found out he was retiring in six months' time.


It may seem like our visit to this doctor was fruitless and a waste of time.  I don't really see it that way.  We had no idea what to expect and although we didn't expect a wonder drug or something like that, we were looking for some answers.  What he gave us were possibilities:  it could be this, it might be that.  He also wrote in his final prognosis that "parents did not seek help from ECI".  I took exception to that. ECI is early childhood intervention, a program that will help a child younger than three who is experiencing developmental delay.  We didn't seek help from ECI because we didn't know about ECI or that it was available. By the time Logan got in to the Child Study Center, he was already three...too old for ECI.  Just the right age to begin with the public school system special ed department.


What our visit to Dr. Haber did do for us was open another door. The tests he ordered ruled out a lot of things that could have been causing Logan's problems.  His prognosis gave us something we could take to our public school and say, "Look, this is what's going on with our son, here is something from a doctor, what can you do?"  The questions he asked were necessary, and it wouldn't be the only time we answered them. It was a beginning.  It was a first step.  For providing that, I am grateful to Dr. Haber.  I must confess, however,  I still have not read any of his books.



Wednesday, May 18, 2011

How Did We Know? Part Two

Well, after everything I wrote in my previous entry, you may be thinking, great, it's autism, they found out and got help and end of story.

I wish things were that simple.

When I suspected that Logan was having developmental problems, the first thing I did was make an appointment with our pediatrician. Whenever you have a young child that is demonstrating delayed development, you shouldn't automatically assume it's autism.  There are a host of medical complications that can mimic autism and cause similar symptoms.  Never assume anything when it comes to your child.

Needless to say, our pedi was very concerned.  He asked if Logan was making a lot of nonsense noises. The answer was yes. He scheduled some blood work, mainly to rule out lead poisoning.  That came back negative.  So we moved on to the next thing, which was a referral to Cook Children's.  We spent the next month or so taking our son to different tests.  Was it a problem with his hearing?  He had an ABR, or auditory brainstem response test. This test involves attaching electrodes to the the person's head to record brainstem activity between the auditory nerve and other parts of the brain.  If Logan had had a tumor on his hearing nerve, or if it was otherwise impaired, this test would reveal that.  Everything came back normal.

I have to stop here, while I'm describing these tests, and explain the strange mixture of relief and disappointment we felt.  Each test that came back normal on our son was like a small victory to me.  But it also filled me with dismay at the same time.  It was wonderful that his hearing was normal and wonderful that he didn't have lead poisoning, but if we couldn't blame it on those things, then what was wrong with our son??


He also had an MRI without contrast. That was a little disturbing to me. He had to be sedated to get this test...how can you make a three year old lie still long enough to do what you need to do?  They allowed me to stay with him until the anesthesia worked its magic.  He slipped into sleep and I had to let go of his little hand and leave the room.  Everything in me wanted to stay there with him the whole time.  That test came back normal.

Probably the hardest test we had to watch was the EEG.  An EEG measures electrical activity in the brain and it's used to diagnose epilepsy.  Logan had to be asleep for this test.  The problem was that Logan never...and still does not...take naps.  He is like a little motor, running full speed throughout the day.  My husband stayed up with him most of the night, taking him to Wal Mart at three in the morning, giving him stuff to eat.  The next day, we took him for the test.  He had to be restrained on a table, wrapped in blankets, and forced to look up into a bright light that would flash and strobe in his face.  We stood on either side of him and he was not happy with the whole situation.  I hated every minute of it.  He finally got so overstimulated and stressed that he fell asleep.  And, of course, that test came back normal also.

So, what this all told us was that no one could find a physical cause for what we were experiencing with our son.  Is autism physical?  Of course it is.  But until someone unlocks the key to what actually causes it, those physical abnormalities, genetic, dietary,whatever...those will remain a mystery.

I felt like we had jumped through so many hoops in the search for what was going on with Logan, only to be told, Good dog. Now do it again.

It was time to see a developmental specialist. And that, dear friends, proved to be a whole other adventure.

Tuesday, May 17, 2011

How Did We Know?

Another question I often get from people is "How did you know that Logan was autistic?" or "What made you first think that there was a problem?"

Autism begins its onset in some children as early as two years old.  Logan progressed up until around that time like any normal child.  His birth was miraculous to me and my husband but uneventful medically.  He interacted with us from the get go and would coo, smile, and respond to our facial expressions like any baby does with his/her parents.  Eventually he started talking.  He would say "mommy" and "drink of water" and other things. Everything appeared to be fine.  He started walking when he was supposed to.  He showed no interest in potty training.

A couple of things happened that were warning signs at the time, though I didn't really put it together with everything else until later.  In my room I had set up a playpen, and I would put him in it so I could keep him "corralled" while I gave my other two kids a bath.  I was in the bathroom with them when I heard a thump, and I ran to see that he had climbed out of his playpen and fallen on the floor.  He cried and screamed and I checked him all over to see if anything was wrong.  I couldn't find anything.  His wrist was a little red but I could flex it and move it with no change in his behavior, and then he fell asleep.  I thought he just scared himself when he fell.

The next morning his wrist was red and swollen.  It was fractured and he had to have a cast.  I was a little dumbfounded...shouldn't the pain have been intolerable to him?  I have since learned that Logan has an unusually high pain threshold.  It's not that he doesn't feel pain.  He does.  It just doesn't seem to register with him like other children.  For instance, we can't let him run his own bath.  He will only turn on the hot water and it will be so hot I can't stand it.  It doesn't appear to bother him.  And this is common in autistic children-an unusual de-sensitivity or ultra-sensitivity to pain.

The other thing that happen was a behavior that appeared almost involuntary.  He was sitting in my lap one day.  Suddenly, without warning, he threw his body backwards, really hard.  It almost broke my nose.  I was irritated and thought it was just some random thing...but it continued to happen, over and over again.  Repetitive, involuntary movements...like hand-flapping or rocking...again, a hallmark of autism.  He also began to make a lot of high-pitched nonsense noises, almost like a bird.

When I put these things together they were cause for concern.  I also realized he was losing words.  There were things he had learned how to say that he wasn't saying anymore.  So I made an appointment with our local pediatrician.  I didn't realize at the time that it would take more than a year to get him diagnosed and that it was just the beginning of a very long, unending journey.  And I'll write more about all the tests we had to go through in a different blog.

Some people might read this and think of how sad it was, that I started out with a "normal" child and "lost" him to autism.  In some ways, it is sad, and there are times when it is lonely, scary, frustrating, or just plain overwhelming.  No one plans to give birth to an autistic child. There are other days when I can't stop laughing, because the things he does are so unique and so humorous.

I don't look at Logan and mourn the "son I might have had".  I look at the son I do have, and I feel very blessed.

Monday, May 16, 2011

Myth Number 2: Vaccines Cause Autism

There were a lot of things I could have written about today.  But I woke up with this particular subject on my mind, so I thought I would address it.  I'm sure there will be people that read this and completely disagree with me, or people who want to debate the issue.  For those who wish to do so, I would like to add the following disclaimer:

I respect every parent's right to raise their child the way that they feel is necessary for that child's well-being.  I have some good friends who chose not to vaccinate their children.  That is their choice.  They have their reasons.  That's fine and I want everyone who reads this blog to understand that what I am about to write is in no way intended as a criticism of parents who choose not to vaccinate their children. You are the expert on your own child (or you should be!).

Back in 1998, a British doctor named Andrew Wakefield published a study. The study involved twelve test subjects, and the study indicated that vaccinations cause autism in children.  The study was published in Great Britain and in the United States medical journal the Lancet.

Subsequently, in was found that Dr. Wakefield had acted unethically.  The method that he used to procure his test subjects, the claim that his investigations were given consent by an ethics committee (later proven false), and the disregard he showed for controlled conditions caused him to be stripped of his medical license in Great Britain and the Lancet to formally retract the study in February of 2010.

Some might argue that Wakefield's questioning of vaccinations in general caused pharmaceutical companies to paint a bright red target on his forehead.  It's quite possible, but the fact remains that there is still no solid evidence linking vaccinations to autism.  In the meantime, it created a scare; so much so that parents have thought twice before having vaccines administered to their children.  As a result we have seen more occurrences of measles, mumps, and whooping cough. We are also seeing an increase in autism each year.  One might also conclude that Wakefield did more harm than good.

So, if vaccines don't cause autism, what does?  That's the million dollar question.  There are many theories.  Lead poisoning.  Dietary issues.  Genetics.  We could talk all day about the benefits of the gluten-free diet or how to detox your child if you suspect mercury poisoning.  As of June 2010,  the CDC reports that 1 in 110 children are on the autistic spectrum.  Yes, let's find a cure.  Let's find out what causes autism.  But let's find better ways to treat it also.  If we said 1 in 110 children were blind, would we not see more Braille books in our schools, more audio equipment, a better atmosphere in our schools  that would accommodate this disability?  I think if that many children were blind, we wouldn't just ask for these things.  We would demand it. And I am all about demanding when it comes to my son.

Saturday, May 14, 2011

We (Almost) Went On A Date

Sometimes, my husband and I start talking about the first place we ever lived after we got married.  We found an apartment in Fort Worth close to Benbrook.  It was ten minutes away from Borders book store, Hulen Mall, and TuttoPasta, our favorite Italian restaurant.  It was also ten minutes away from movie theaters and any other place that might strike our fancy.  We both worked full time.  I was a travel agent and he worked for a vending company.

We ate out every night.  We hung out at Borders when we were bored.  On the weekends we went shopping.

We bemoaned our lack of funds.

Eating in and cooking for ourselves was an adventure and a treat.  So was renting a movie.

Do we laugh at ourselves now?  Yes.  Do we shake our heads at our younger selves and comment on our extreme naivity?  Sometimes.  Do we wish we could go back to those days and do it again?  Often.

We don't often ask anyone to babysit our children anymore.  If Logan is a handful for us, we can only imagine what foisting him off on someone else is like.  But, we were jazzed about the new movie Priest that opened this weekend.  Sci-fi is our candy.  So we made a phone call to my mother and she agreed to watch the kids.  The movie started at 745 pm.  We were also hyped about getting to spend some time together-alone-without the patter of little feet or the melodious mingling of three little voices. (Do you hear that, your Highness?  Those are the shrieking eels!  Thank you, Princess Bride.)


We spent the morning and early afternoon cleaning up the front and back yard, cleaning out the van, and just hanging around the house.  About 645pm we left.  We weren't five minutes into the trip to Mom's before the keening started.

What is keening?  There is more than one definition:  An eerie wailing sound.  Intense; piercing.  Having a fine, sharp cutting edge or point. They all fit what Logan does when he is overtired, overstimulated, hungry, or just plain uncomfortable.  And he was doing it in our van, on the highway, on the way to my mother's house.

We always cringe when we hear this noise, because we know it means that he has reached his limit; he is overtaxed and cannot take anymore.   Something has to change in Logan's environment at this point before he will calm down and stop rupturing our eardrums.

"Just turn around," I tell my husband.  "We can't do this.  Let's just go home."

We turn around.  We stop by Taco Bell and get him some food. Did we feed him before we left the house?  Yes.  But he's still hungry.

We call mom on the way and tell her it's not going to work.  We get home, he eats, he's fine, the keening stops.

I look at the clock now and it's 741pm.  The movie starts in four minutes.  I don't waste a lot of time in my life thinking about what might have been "if".  I've learned, the hard way, that that way of thinking only brings on a lot of grief and dissatisfaction.  But do I ever think about how things might have been if we had not had Logan, if he did not have autism, if I had kept my forty hour a week job,  if if if if??

Yes, I do.

Do I wish I could go back and change it?

Never.

Some things are precious and valuable, and some things are made that much more so  by the  prices we pay for them.

Friday, May 13, 2011

Chaos Theory

When I was a junior in high school, I took an advanced math class.  Calculus, to be exact.  Why?  Well, because I didn't know any better.

The teacher, who was actually a brilliant woman who had her PhD in English AND Math (why was she teaching at a public high school?  Perhaps she didn't know any better?) put us in groups of two or three and asked us to write a research paper on a math subject.  Joy.

My best friend and I, out of the many topics that were available, chose Chaos Theory.  We knew nothing about chaos theory.  It sounded vaguely interesting. For all of you who did not have the pleasure of writing a math research paper, this is what Chaos Theory basically is:  small changes in one system can have a vast impact on other systems that diverge from it.  I.E. If you step on a butterfly while you are travelling through time, when you come back the alphabet will be screwed up.  If you sneeze, then twenty years down the road a tsunami might swallow the Hawaiian islands.  (Read "A Sound of Thunder" by Ray Bradbury, you'll get the picture).  Thanks to my morning, I now know more about Chaos Theory than I ever wanted to!

It started out well enough.  It always does...like the calm before the storm.  Heh.  So, everything was fine.  It was.  I am traipsing through my personal jungle, careful not to step on any Lepidopteric toes (do butterflies even have toes??) when Logan wakes up.  You want to talk about a sound of thunder, this would be the first warning rumble, friends.  He wakes up and I have to give him his medicine.  But back up.  Before that, my daughter couldn't find anything to wear.  (Her chest of drawers is full of clothes.  She's 9.  Sometimes, I can't find anything to wear, either.  It's a girl thing.)  I find some clothes that meet her approval.  Crisis averted.  The tears barely had time to flow.


So, I give Logan his medicine.  This involves a spoon, some honey, and a time release capsule that is pulled open and sprinkled on said honey.  It also involves he and I doing a complicated choreography of dodge and bait all over the house, culminating in him sagging against the love seat and me tipping the spoon into his mouth.  Well. I didn't factor in the half-masticated chocolate chip cookie that he was trying to finish and he didn't like the taste of honey with it.  At that moment daughter walks into the room.  Logan spits it all over her.


Yes, friends. Some autistic children spit.  They spit when they're agitated, they spit when they're angry, when they're scared, and woe to the person who is standing in the way. 


My daughter screamed and Logan became further agitated.  


Well, I got my daughter cleaned up and we were getting ready to go.  My oldest son comes into the room crying because his lizard, which he caught in the front yard and lovingly tended in a habitat of his own making, has vanished.  Somewhere in our house a green anole is running rampant, eating crumbs off the floor and taunting our two shih-tzus, one of whom is dumber than a box of rocks on a good day!  At this point Logan becomes further agitated and starts yelling at the top of his lungs.  Yes.  Some autistic children yell.  They scream.  They make all kinds of nonsense noises.  It's like a whooping crane on speed.


At this point the doorbell rings.  And I think, they've finally come to take me away.  But no.  It's my good friend Caroline, who lives around the corner from me, who I love dearly, dressed in her Ibanez t-shirt and black eyeliner, she grins at me and says, "What're ya doing?  Are ya going somewhere?"


I remind her that I have to take the kids to school.  "Oh, well did you see all the garage sales around?"  It's true.  Our neighborhood exploded in a plethora of used lamps and granny rockers, onesies and beanie babies.  "Yeeesss..." I say.  It's, like, 735.  I have to go to three different schools.  


"Well, do you want to go when you get back?"


"I have to take Logan to therapy."  


"Oh.  Well, call me later."  


Okay. I promise to do that.  At this point the shih-tzus are running around in circles, my oldest son is sobbing over the lost anole, my daughter is chattering, and Logan starts hitting.


That's the side of autism that not a lot of people talk about with people who don't deal with autism.  When Logan is supremely agitated, he strikes out at the person closest to him.  He will punch, kick, hit, grab, or do whatever he can to elicit the most immediate response.  We put him in time out, we take away his favorite toys,we have tried a number of things. We. Are.Working. On. It.  Unfortunately he targeted my daughter, who screamed bloody murder at the top of her lungs-twice.  At this point, dear friends, all the butterflies are either dead or dying.


I end up leaving him at home with my husband, he is so out of control.  I take my two oldest to school.  We pull up to the entrance.  My son looks at me with tears in his eyes and says, "I can't go inside.  I'm afraid I'll start crying.  I can't go."


I use my firmest buck-up you're-a-soldier -get-out-there-and-do-it voice:  "Nathan Stogner, you listen to me.  We are going to find that LIZARD! And if we DON''T find that lizard, then WE WILL CATCH ANOTHER ONE!  Now, get out of this van and GO TO SCHOOL!  I LOVE YOU!!!"  And he got out of the van and went.


I pick Logan up from the house.  I take him to therapy.  He has such a great time he doesn't want to leave.  It's only 1100am when he's finished.  I think all the way back, years and years ago to when the alarm clock rang at six am this morning, and think about how I got up out of my warm, cozy bed.  And I ask myself, Why?  Why did I get up?


I guess I didn't know any better!

Thursday, May 12, 2011

Myth Number 1: Autistic Children Don't Make Eye Contact

My son has the most beautiful blue eyes.  They are enormous and he has impossibly long eyelashes. Every emotion he feels, I can see reflected in those brilliant orbs of his.  How do I know this?  He looks at me.  Into my eyes.

There are a lot of people, some even professionals, who will tell you that autistic children do not make eye contact.  This simply is not true.  Do they avoid eye contact?  Yes, often.  But more often than not, Logan will come up to me and look into my face, and try to communicate.  He will stare into my eyes while he is talking/jumping/yelling/whatever.  Does he make eye contact? Yes.  But it has to be on his terms, not mine.

Logan's attention span is about a three on a scale of one to ten.  It's very short, unless he's engaging himself in some make-believe game that he's made up or watching the Babies documentary (more on that later).  For this reason, it's very hard to hold his attention long enough to ask him a question or give him a set of directions.  Logan's therapist taught me a neat little trick to get over this particular obstacle.  "The eyes follow the hands," she said.  So when I want Logan to listen,  I take his hand and I put it on my cheek.  Then I speak to him.  And you know what?  It works!

Now, what about my other son, whose attention is also prone to wander?  I can stand there and talk to him, and watch as his eyes do a slow drift over to the tv or computer or the dogs wrestling on the floor.  I have tried this other trick with him before, and it works, too.  It also annoys him, but it's effective.  I cover up his eyes.  Then I tell him what I want him to hear.  Works like a charm.  Irritates the snot out of him.  But it gets the job done.

The other myth that I feel goes along with the eye contact is that autistic children are not affectionate.  Guess what?  Some of them are...extremely so!  I cannot count the number of times I've gotten a hug from Logan, or that he's held his face up to me for a kiss.  Sometimes he will crawl into my lap and pull my arms around him.  Sometimes he will say, "I want mommy to hold you."  (He gets his pronouns mixed up...you and me are interchangeable with him right now.)

But, if you annoy him, or he doesn't want to talk, he is just as likely to say, "I say bye-bye now."

And while Logan's communication issues have been a struggle for our family, I have to admit one thing.  The simple straightforwardness of his words, the way that he conveys what he wants to convey in as few words as possible, is sometime more preferable to me than trying to decipher the confusing actions and mixed signals in this very chaotic world we live in.  Logan, in his own way, is articulate in the simplicity of his language, and his actions, while sometimes hard to deal with, are unfeigned and true to what he is feeling at the moment.  If we could all be so honest, with ourselves and with each other, what a different world this would be.

Wednesday, May 11, 2011

Fact Number Two: Autistic Children Are Like Snowflakes

Someone asked me the other day what "type" of autism my son has.  I'm really glad she asked me that.  It gives me an opportunity to clear up more misunderstanding. I could be a smartass and say the "non-contagious" kind, but I have to remember what it was like before I had Logan (wow, that seems like SUCH a long time ago) and I didn't know what autism really was either or what it meant to a family that had a child like that.

Autism is a spectrum disorder (hence the name of the blog, "Spectrum Notes").  It is also called ASD, or autistic spectrum disorder.  This means that a child with autism can fall anywhere in a spectrum of behavioral, communicative, emotional, and learning disabilities.  There are a host of sub-categories that fall under the umbrella of autism.  Pervasive developmental disorder (PDD), Kanner's autism, Rett's syndrome, childhood disintegrative disorder, Asperger's...all of these are on the spectrum.  It's easy to see why people get confused. But what does it mean, really?  This is what I tell people:  autistic children are like snowflakes.  They are made of the same stuff, but if you put one autistic child next to another, no two will ever be the same or exhibit the exact same symptoms.  There will be similarities, but each child is different when it comes to behavior, emotion, and interaction.  It's different from, say, someone who has the chicken pox.  Chicken pox is chicken pox and it will look the same no matter who has caught it.  

Which brings me to my next point:  no, autism is not contagious.  I hope no one ever asks me this.  I don't think I'll be able to refrain myself from looking sorrowful and saying, Yes it is, and I'm sorry, but it's too late for you.

 


Tuesday, May 10, 2011

Fact Number One: Autistic Children Do Not Have "Powers"

My youngest son, who is seven years old now, has autism.  Some would describe his autism as severe, but it's all relative.  More on that in a different blog.  What spurred me to write this time is that more than one person has approached me, and, upon learning that I have an autistic child, asked, "So what is his power?" or "What is his special ability?"

I can only assume they are asking this question out of simple ignorance. For most people, what they know about autism is learned from movies like "Rain Man".  So, now I'll set the record straight.

Autistic children do not have a "power".  I often respond to these people by saying that my son can fly, or melt objects with his eyeballs.  I also assume that what they really mean is and don't know how to say is this:  Is your son a savant?

What is a savant?


"Savant syndrome (pronounced /səˈvɑːnt/[1]), sometimes referred to as savantism, is a rare condition in which people with developmental disorders have one or more areas of expertise, ability, or brilliance that are in contrast with the individual's overall limitations. Although not a recognized medical diagnosis, researcher Darold Treffert says the condition may be either geneticor acquired.[2]"  (Wikipedia)



There are autistic children who possess such talents. They can hear a piece of music once, and replicate it on the piano perfectly.  They can sing in flawless Italian any opera they hear.  They can give you the answer to a very complicated math problem, simply by thinking about it.  Such children are rare.

Is my son a savant?

No, he is not.

Does he have intelligence?

Yes, he does.  Sometimes frighteningly so.

Does he have a "power"?  I pray the answer is no.