GO POTTY....GO POTTY NOW!

Many autistic children have difficulty initially getting potty trained, and even if they do get potty trained, many times there are accidents that follow for a long time afterward.  This has been true for Michael.

Michael is a twin, and I think that is a good thing.  He has a sibling, a very bossy sibling, who is the same age.  Mikayla was trained by the age of two without any problems at all.  She got to go to the private pre-school early because she was potty trained.  Not so for Michael.  If I remember right, he got potty trained by the time he was four.  I think this is a pretty good age for #1 being  a boy and #2  being a boy with autism.

Chris with the twins when they were 3.
 Mikayla trained, Michael not so much.

Even though he was mostly potty trained we continue to pack a "just in case" bag in his backpack for school. This "just in case bag" usually has a pair of underwear and pants, just in case of an accident.  He used it a few times during this last school year (first grade), and the one time I had cleaned out his bag and didn't put a "just in case" bag in his backpack, was the one time that he had a really big accident and there weren't any extra clothes for him.  That was the day that I had to run home very quickly, and missed co-teaching my 3rd grade math class.  *sigh  Luckily I work at the same school as the twins, so everyone was extremely forgiving.

So what is happening in Michael's head when he has an accident.  I believe it is called, "I am too busy doing what I am doing, and I don't have time for any interruptions, even if it is myself that is interrupting."  Many times he is building with his blocks, watching a TV show, or is on the computer playing a fun computer game.  I watch him clutching his crotch and practically dancing around the room.  I say to him, "Go potty, GO POTTY NOW!"  Sometimes he will run off and go to the bathroom just making it by the skin of his teeth.  Other time he will refuse, "I don't have to go to the bathroom," he replies, his eyes fixed on the computer screen and his dancing getting worse and worse.

Lately we have had many accidents in a row.  One was caused in the kitchen (thank goodness...easy to clean floor), in his swim suit.  He was trying to get a cup of water for himself and was stuck there.  His dilemma was to either finish getting the glass of water, or hurry off to the bathroom.  He chose the first option and peed on the floor.  The next day we had an accident up in his bedroom, he was playing with blocks and had to go, he stood there screaming from his bedroom holding himself.  He was stuck and couldn't "go anywhere",  he was holding handfuls of pee and was afraid to move.  I couldn't help him, as I am stuck on the couch with a broken foot (long story) and he was having a melt down because no one was coming to help him.  He then had two more accidents that day, so there was 4 in a matter of 2 days.  What in the

Having a broken foot that has 5 fusions is not easy
when you have an autistic kid.

world?

It doesn't help to get mad or upset at him.  I think when we do that, it kind of gets worse.  We talk to him and tell him he needs to be more aware of this situation.  Michael says, "I will try mommy."  This cannot be any good for his self esteem.  This isn't any good for his social image.  Right now first and second graders don't catch on as quickly, but in third and fourth grade?  He is going to be the "baby" who wets his pants and has to have him mommy pack him extra underwear.




Well, I blame the onslaught of accidents on summer vacation.  There isn't a real routine this last week before we go back to school.  There is no camp, no swim team.  The twins are sleeping in later.  There isn't a real schedule.  Michael thrives on schedule.  There is also too many "fun" things going on.  It is very hard for my "normal" kid, much less my autistic kid to break away from such fun.

I also believe that all of these accidents might be a sensory issue.  I do not think that Michael realizes he has to go half of the time until it is way too late.  Maybe he thinks he can get to the bathroom on time.  Does he actually feel the sensation to have to urinate?  Maybe the sensation is muted.

I also say in the back of my mind, maybe this is an attention deficit thing.  Many autistic children are also diagnosed ADD or ADHD.  Sometimes I think, "Maybe we should try ADD medicine, then he would pay attention to his body and go to the bathroom on time."  I am not one for medicine, but I slowly find Michael paying less and less attention.  I'll wait tho and see what his second grade teacher says.  If it is starting to affect academics in school, then we might have to seriously look at this.

We are looking forward to starting school again.  We will be on a more predictable routine, and hopefully we will have less accidents.  I will be packing a "just in case" bag again for second grade.  I will probably be packing this bag for a long time, because Michael will always be "Somewhere Over the Spectrum."

Michael? What is it like to be autistic?

Yesterday I asked Michael, "What is it like to be autistic?"  When I think back about my idiotic question, I wonder why in the world I even asked him that?  How would he know what it was like NOT to be autistic.  He really doesn't have anything to compare it to, because he has been autistic all of his life.  Still I wanted to know if he had any feelings about it.  I wanted to hear HIS definition.  This is the response I received.
"I don't like being autistic, I don't want to be autistic," he says as he snuggles up beside me on the couch.
"Why don't you like being autistic Michael?"  I say.
"I don't like to be interrupted, I want to do what I want to do.  I don't want to answer questions, I just want to keep building blocks or watching my TV show." 
"Ahh," I say, "You don't want to be bothered when you are concentrating on something you like."

"Yes, I want to do my own thing," he states. 
"Is there anything else that you don't like about being autistic?" I ask.
"I don't like being picked last.  I don't like it when I am not picked to be the AIM camper of the day.  I think I am doing something all wrong.  Why won't they pick me as the AIM camper of the day mommy?"
That just about broke my heart into pieces.  The AIM camper of the day is when they pick the best behaved and helpful child at camp for the day.  The twins have gone to camp for approximately 4 weeks.  Mikayla was picked one day.  Michael has not been picked yet.  It reminded me of when I was a child.  I was always the last one picked on any team in gym class.  My heart went out to him, because I understood that part of being the last one picked.

"I don't know why honey, but you still have 3 more days to be picked as the AIM camper of the day," I feebly reply, ready to slap my forehead for giving him that hope.  Sure he can be helpful, but I'm not sure about the best behaved child of the day.   I quickly alter the subject.

"Michael what do you like about being autistic?" I say, looking at him expectantly.
"I don't like being autistic, I don't want to be autistic," he says emphatically.
"Don't  you like being super smart in math?  Don't you like being great with puzzles and figuring out games?  Don't you like using that creative brain of yours?"

"Yes, I am super smart in math aren't I mommy?  I like building my blocks, but I still don't like being distracted by other people." he says.

"Do you know that I love you, and even though you have autism, I wouldn't want you any other way buddy.  I love you for you, and I think you are a great kid."

I have worked with Deaf students for many years, and the whole cochlear implant issue came to the forefront of my mind.  When the cochlear implant was invented it could "cure" Deaf people.  Many Deaf individuals didn't want to be "cured".  They were Deaf and they were proud of that fact.  So many times I hear people asking for a "cure" for autism.  My husband, Chris, is very proud of being autistic.  He doesn't want anybody changing how his brain is functioning.  His ability to figure out problems is far superior than mine. If you ask our family, "Do you want to cure autism?" we'd have to say, "No, not really." We want to manage Michael's behaviors, but if we "cured" his autism, he wouldn't be the person he is. 

For children with Aspergers or High Functioning Autism, I don't think we really want to cure them, just manage certain behaviors.  For the children at a different end of the spectrum, it might be a different story.  We want them to be able to communicate and express everything that is going on in their brains.  Finding a cure for those kids and families would be a relief I would guess.

Still it is interesting what Michael says about his autism and how he feels about it.  What do other autistic people feel about being "Somewhere Over the Spectrum?"

The Space/Time Continuum

On Sunday I tell Michael, "Ok buddy, you have camp this week.  You will have a field trip on Wednesday and Thursday.  This is the last week for camp because we will start school pretty soon."
"When will we start school mommy?" replies Michael. 
"Oh, in 2-3 weeks.  You will start school on Thursday, August 29th, " I say.

He gets all excited, because my children really do LOVE school.  He smiles and says, "Oh boy, I go to the field trip and then I start school on THURSDAY!" 
"Not this Thursday buddy, in 2-3 weeks," I tell him.

"Yea!  In five more days I start school!"  he replies. 
*Sigh....it is the time thing again.  I proceed to pull up my Google calendar on my Android phone and show him the month layout.  I show him where he has camp and which day he starts school.  I have him actually enter in the "event" that states "Michael and Mikayla start school."  He happily does this, and I think he finally has it down.  Thank God for calendars and clocks!

I don't know why, but I find many people who are on the spectrum have very little concept of time.  Oh, they understand space pretty well.  Michael can build amazing things with his blocks.  They have a good understanding of quantity and measurement.  They usually have really good estimating abilities with volume.  They can deal with space.....but what happens to their understanding of TIME?

For many years, Michael would get very mixed up with time.  Even when he speaks he will say, "You know mommy...LAST DAY!"  Which in "normal speak" means yesterday.  He did very well in preschool and kindergarten on every subject EXCEPT calendar time.  He, like many people on the spectrum, needs a visual schedule.  The speech therapist uses BoardMaker to make Michael his schedule so he knows exactly what day he is on, and what he will do that day.  He knows if he has speech, or extra super smart math class. He knows when he has lunch and recess and which special (art, music or gym) he will have.  He also has an icon that states if it is a topsy-turvy day, a day when an unexpected event will take place or if his schedule is a little out of whack because of a special event.  He gets his schedule/routine imbedded into his mind.  If we didn't start with a schedule, he would be totally lost.  Oh, he does memorize it over time, to the point where he doesn't need it.  But at the beginning of the new school year, we better have one in place for him.

Most people with autism cannot seem to keep track of time, and often get lost in their special project.  They don't notice that they are usually late to many things, and make other people late in the process.  They get caught up in their own little world, and never realize that minutes, hours or days have passed by.  Everything that happened in the past for Michael is called, "Last Day".  Everything that is going to happen in the future better be written on a calendar in which we can physically count the number of days to an event.

Why is it that time is such a difficult concept for him to grasp?  Is it basically just "not important" enough to worry about or think about?  It must be a concept that is on the very bottom rung of what is interesting to him.  Maybe time is totally irrelevant for him.  Other people have their time issues too, my own dad was late to my wedding, and we always joked around he'd be late to his own funeral.  Yet it seems to be more extreme to ASD people.  I think that it is another sure sign that Michael is definitely, "Somewhere Over the Spectrum."

Puzzle Boy

Ever since Michael was a year old, he has been putting puzzles together.  When he was one, he was putting the alphabet puzzle together, in order.  His twin sister would come by and chew on a piece of the puzzle, Michael would have a complete melt down that she took the piece and that his puzzle was not in order.

When we enrolled him in a private pre-school, all of the pre-school puzzles were too easy.  I had to bring in 50 and 100 piece puzzles to keep him occupied during free choice time.  By the time he was in kindergarten we were looking at 500 piece puzzles.  Now a 1,000 piece puzzle is usually finished in a day.  How does he do it?

Michael finishing a complicated sea animal puzzle.

Michael isn't the only one.  I have run into many children on the spectrum who have an amazing gift with puzzles.  They have an amazing gift with patterns and numbers.  Their brains operate in a different way.

I am amazed at the patterns that Michael can see.  His brain is just made that way.  He is a lot like his father in this way.  My husband Chris can "see" thing too.    He can see the Matrix!  We often tease Chris that he should be nicknamed "Neo".  Even though Chris is not diagnosed with autism, I sincerely believe his brain functions like an autistic person.  I have a feeling deep in my bones that autism is at least half way genetic.   This is why Michael is high functioning, and why my step-son Dale is Aspergers.

Their minds are a wonder.  They can solve problems in very unique ways.  They solve problems differently than you and I do.  Chris affectionately calls the rest of us the "norms".  We "normals" can't figure some things out that just comes naturally to them.

Michael showing Mikayla where the next piece will fit.

Sometimes I think that maybe mother nature is evolving human kind.  Maybe this is the next step of the evolutionary process.  Maybe the reason that we are identifying more and more children on the spectrum is because that is the way nature is "growing" people now.

No matter what is happening with Mother Nature's new genetic codes, one thing is for sure, autistic people are very special and amazing.  I am very lucky to be a mommy, step-mom and wife to these guys that are definitely Somewhere Over the Spectrum.