Short End of the Stick

My youngest son, TL, is a HANDFUL.  Ok, that’s putting it mildly.  His body is in constant movement and his mouth is forever moving.  He has a lot going on in his little mind and it just overwhelms his 4-year-old body.

But he is a sweet boy. He loves to play (not share, but play!) and loves to talk. He loves to be read to and he has a very active imagination…maybe too active.

You see, he also like to tell “stories” –fibs, lies, whoppers—whatever you want to label them.  It can be hard to sometimes tell what is true and what is part of his imagination.  His teachers, in particular, have had a hard time telling fact from fiction.

Here’s my favorite one:

Teacher: “I heard you’ve got some moves!”

Me: “Excuse me?”

Teacher: “TL was dancing on the playground and when we asked him where he learned to dance like that he said his mom taught him.”

TL chimes in: “Yeah, mom, like this” and he starts to dance while shaking his booty in the air. 

If you know me, you know I have never danced this way.  No twerking for this girl.

Anyhow, he has been in the same class for almost 2 years and the teachers have finally begun to see that many of his outlandish stories are works of fiction.  That’s good—um, maybe not. 

He has become the “boy who cried wolf.”  Now, when I bring up a concern about something TL says happened in class I get the response, “well, I’m sure it didn’t happen like that, but I will keep an eye out.”

Ugh!!!  Look, my son tells great stories, but it is pretty easy for me to figure out when it is the truth: I ask questions.  Usually the fictional stories will end up involving aliens, cartoon characters, him driving a car…some kind of dead giveaway.  Yet, trained professionals think they can just dismiss something my son says another child said to him?  His story did not change when I asked him about and it did not change when my husband asked about it.

But, much of life and our relationships is built on trust and it can be hard to trust a really good liar. What do I do? I can’t make people trust him. The incident from above is not something worth pursuing unless it repeats, but I am still angry!  Why does he get the short end of the stick with something he can’t control?  We have been told that his imagination is so active that he sometimes has a hard time keeping it out of the “real” world.  We have been over all the highlights of why lying is wrong and he usually ends the discussion with, “what is lying, mommy?”  Cue palm hitting forehead.  

He doesn’t know he is doing something wrong.  He thinks he sharing a lovely tale he wove together. He doesn’t understand trust and truth.  He’s 4!!!  He’s autistic!!!  Give him a break not the shaft! Ugh!

Black and White

There are some people that see things as either one way or another. That describes my youngest, TL, completely. Take what happened yesterday. My husband took the boys to The Tech Museum and TL overheard that food and drinks were not allowed inside. This was all he needed to know.  He soon was telling total strangers that they were not supposed to have food there. He didn’t make room for exceptions and didn’t know how to ignore the lawbreakers.  It was simply black and white.

It’s like that a lot in our house. The whole process of explaining strangers to TL has been daunting. The social exceptions, like the old lady commenting how cute my daughter is or the man lifting his hat (people still do that!?) and saying good morning, are all lost on him. He takes these interactions to mean he can talk to any stranger. Then if we explain that a certain person is a stranger, that means all people that look this way are strangers. Or that kids can’t be strangers.

Concrete thinking. That’s what this style is called by professionals. Everything is literal and hyperboles can result in some really amusing misunderstandings. Rules are rules and if he has to follow them (though he rarely does) then so should everyone else. He kind of exemplifies the saying “do as I say and not as I do!”

What makes things even more difficult with TL is that he is VERY outspoken.  He has no problem sticking up for himself and voicing his opinion.  This can be a bit embarrassing at times. Like the time he shouted at a lady pushing a grocery cart down the street with her child sitting in the large part of the cart.  Oh, my, did he have lots to say then.  “Why are you pushing that cart?” “You’re not in a grocery store!” “Why is the kid riding there?” “That’s dangerous. He should not do that.” He was right on all accounts but…it was not his place.

Or was it? Maybe we need more people that see things for what they are and will speak up when something is wrong. Maybe we are supposed to gently guide outspoken children into the activists, preachers, leaders, of tomorrow.  

Maybe instead of using black and white thinking in our labels, we could see that each person has a value higher than we could ever imagine. Instead of dwelling on the embarrassing episodes, we can remember that someday we view those memories as the start of someone really, really  great!

Recognizing Your Limits

Well, it is been awhile since I penned a blog, but I have good reason—I had our little girl, SG!  She is 3 weeks old tomorrow and a true little beauty.  She was born cesarean and that has been a true test for me.  I have had to recognize my limits and—shudder—give control to others.  It has been a growing experience for our whole family.

Yet, it is not the only way I have had to recognize my limits.  Something happened today to take me back to a place I was in 7 ½ years ago.  At that time, TJ was still an only child and just started his mainstream kindergarten.  We wanted it to work so badly—and it might have if it wasn’t for one rotten teacher. 

Ms. S was a kindergarten teacher with a chip on her shoulder.  She complained as much as she could to parents about the lack of district funding for school supplies and lacked any kind of professional demeanor.

Now, TJ was not a difficult child, but he needed guidance in the classroom.  She hated that.  She stated to me (in front of him!!!) that if he was autistic he belonged in an autistic classroom.  She stated that he was horrible at cutting, drawing, tracing, etc…all in front of him.  When I attempted to set up a meeting with the principal about her, she showed up as well.  They decided that TJ’s issues were behavioral and wanted to set up a behavioral plan.  They would not agree to change his teacher.  They would not budge.

The results from this:  TJ suffered from dangerously low self-esteem for years (to the point of self-injury) and would often repeat some of the things she had said about him.  We pulled TJ out of school the day of the meeting.  I homeschooled him for a few weeks and then we enrolled him in a private school for the remainder of the year (another horror story, but I digress). 

Anyhow, after submitting a complaint to the district, I tried to put it in my past and work on making the present and future better for TJ.  I never saw her again…but that almost changed today!  During a family jaunt to Target, my husband turned to me and said, “Ms. S was here.”  What? Where? Let me at her!

Apparently, she had come near us as we were perusing the salads.  She probably vaguely recognized us and was hoping to surprise a former student.  Suddenly, she turned tail and disappeared; probably remembering exactly who we were and why she shouldn’t say hi.

God knew my limitations.  That is why my husband saw her and not me.  That is why my husband had the wisdom to alert me after she left.  I really don’t know what I would have done if I saw her.  I can imagine several scenarios that would have ended with me in handcuffs.   Or maybe I would have showed my wonderful son off to her, pointing out that this “horrible cutter” was a gifted student, kind-hearted son, and all-around wonderful person. 

But I guess her running away says it all:  she screwed up.  She bullied a student and two parents.  She made a student feel worthless.  She has to live with that.

As for me?  I will tuck this away in the past again and know that God knows my limitations and will not put me in a situation I cannot handle.

Please Don't

There are already a plethora of these blogs on the internet right now, but I needed to say my peace.

Please don’t compare my sons to Adam Lanza.

Please don’t blame a neurological disorder for this heinous crime.

Please don’t make autism or Asperger’s synonymous with mass killings.

Please don’t jump to conclusions about a mother you never met.

Please don’t distance yourself from a child because they have autism.

Please don’t compare the physical outbursts that can be triggered in autistics with a planned massive attack on innocent school children.

Please don’t make it even more difficult to tell you that my sons are autistic.

Please don’t believe everything you read or hear about autism.

Please don’t make my sons and others like them into modern-day lepers.

Please….don’t.

Maybe Someday

Sometimes things happen that really shine a spotlight on the difference between my boys and their peers.  Yesterday was one of those times. 

My older son, TJ, got invited to a beach party with some of his friends that he graduated elementary school with.  We all went hoping for the best.  What I got was a big dose of reality.

Let me preface this by saying that I don’t keep my boys in a bubble.  We do, however, monitor situations and decide what is appropriate.  I thought yesterday would be great for both boys.  And, as far as they are concerned, it was.  For me, on the other hand, it was an eye opener.

TJ was so happy to see some of his old friends and settled in to help one of them build a sandcastle.  Except for the reminders I had to give him to pull up his shorts and keep his bottom covered, things were good.  Then, more friends showed up.

Some of them were boogie boarding.  We have never had TJ boogie board, just because he really still doesn’t know how to swim well unsupervised.  It’s a coordination issue, but that is another blog.  Other kids were striking up conversations with each other.  Uh-oh.  I know this is hard thing for TJ, but I figured he would be more comfortable since he went to school with these kids for so many years. 

I saw him standing around by the sand castles and looking so confused.  I could practically see the thought bubbles above his head:  “Where is everybody at...Oh, they are talking over there…I wonder if someone will come and build something with me…Man, it is hot…”

He walked over to me and told me that he was bored.  I pointed out that his friends were all over there.  He should go hang out with them.  I mean, that is the whole reason why I lugged my pregnant self across all this sand, right?  Of course he was still left not knowing what to do.  He finally went wading in the water, only for his friends to decide it was a great time to play volleyball.

TL was having a better good afternoon.  He dug in the sand, made his father make countless trips down to the surf to fill buckets of water, knocked over the sand castles the bigger kids made, and threw sand at people.  While some of these behaviors were annoying, no one said a peep and probably wrote it off as typical bratty kid stuff. 

Things took a turn when he decided to go and grab a 3-foot shovel from some kids down the beach.  They were total strangers and he just grabbed the shovel and said it was his.  He swung it around wildly and told them they were not nice.  The kids (and their parents) looked at TL like he was Chucky, while I tried to count to 5 and tell him to put the shovel down (and just where was I going to give him a time out on the beach?).  That seemed to work, but it was obviously time to go.

Now, it is not like I didn’t know that my boys have problems in social situations.  I use all the right phrases (social awkwardness, lack of social cues, socially challenged), but sometimes you just see it, right there, and it makes my heart sink into my stomach. 

I like what John Schneider from the old show Dukes of Hazzard once said, “But some things that most children just kind of learn by osmosis need to be taught to a child with Asperger's”—or autism.  I realized yesterday, just how much more I still need to teach my boys.  Maybe someday, a trip to the beach with friends will actually be relaxing.  Maybe someday…

Hating the Burden (Substitute Your PC Word Here)

I laid down on my bed tonight and cried after my youngest son went to bed.  Not just a little cry, but a full-on sobbing fit.  It was one of those days today.  One of those non-stop autism days. 

TL spent the day being stuck on certain things (perseveration), being defiant, needing sensory input, and just being plain ol’ difficult.

This all culminated with a battle over the clipping of his toenails.  TL has always fought us on clipping his toenails.  We have tried every bit of advice we could get our hands on with little or no success.  Clipping them while he was sleeping didn’t work.  Using the nail scissors didn’t work.  Using a soft nail file/buffer didn’t work.  The problem is that he doesn’t want his toes touched—at all.  They are very sensitive from all the toe walking he does and the skin on his toes often gets dry and irritated.

But, we finally have had some success with a reward/motivator/distraction technique; we let him play with some magnetic toys that had belonged to his brother.  He is only allowed to play with them during nail time, so they keep him busy while I do the clipping…that is, until tonight.

Tonight, TL was just not having it.  He fought and kicked and screamed and cried and scratched and swung around the whole time. He finally wore himself out enough that the toys looked good again and he gave up. He didn’t fight me again until I rubbed some lotion on his dry toes. He went to bed exhausted and I collapsed out of exhaustion in my bed.

I cried uncontrollably and lie there hating autism, hating the simple chores that turn into wars, hating the behaviors that are not easy to explain or deal with, hating…the burden.

I know that "burden" is a word that will set off a few people, but sometimes that is the best word to describe it.  There are others:  challenging, relentless, daunting, overwhelming, frightening, all-consuming...

I also know God is there to help me. But when I am restraining a very strong preschooler from kicking my pregnant belly, I don’t always feel Him.  Instead, I feel the weight of this burden of autism.  Having two sons has widened my view of autism, but it has also widened my load. 

I still praise God for the blessings that have come with autism and my two beautiful boys, but I also get exhausted…exhausted from carrying such a heavy burden. I just have to learn to put the burden down more often and rest in Him.  Only He can restore my soul and get me recharged for the next day–the next battle.

So, tonight I cried and I cried and then, I got ready for tomorrow.

How Can I Complain?

Seriously, how can I complain? Yes, I have 2 boys on the autistic spectrum. And, yes, there is a chance that the baby I am carrying will have it too (Surprise! I’m pregnant!).  But, my children can talk. They can even argue with me.  Some children on the spectrum can never do this. Some children are almost completely unable to communicate in any form. 

I remember that short time when both my boys were that way. It was heartbreaking.  It was bleak.  It was a desperate time.  Fortunately for us, ABA and speech therapy gave my sons the tools they needed to communicate.  Now, they are not “cured” by any means—I think I have well established on this blog that I don’t believe that is possible, nor do I want that for them.  They still have their quirky ways or “ticks” as a friend refers to them.  I still have to make accommodations for them and think ahead for ways to meet their needs.

We have a trip planned to Seattle in early July to help take part in a genetics study on autism.  It is our first airplane trip as a family.  The thing that weighs on me the most is how my youngest son will do on the plane.  Noisy normal toddlers are thrown off planes.  My preschooler takes noisy to a whole new level and simple doesn’t know how to sit still for two hours.  I just continue to pray about it and find things to pack in our carry-on bags to entertain him.

But, the thing is that I can entertain him. I can find techniques that work (albeit for a short time).  Some parents are not that lucky.  Some parents feel so desperate that they turn to alternative medicine voodoo to “cure” their children.  They put them on restrictive diets and cling to any sign of improvement.

Some parents give up on their children.  Some parents resort to violence in an insane attempt to “beat the autism out.”  Some parents go numb.  Some parents go into denial.  Some parents fight each other.  Some parents blame themselves.

So, I ask again, how can I complain?  I got two beautiful boys and a third child on the way.  I have a supportive husband that works with me to raise our children.  My children have responded well to the scientific approaches to autism. 

I am truly blessed by the load that God has allowed me to carry.