Rigid, Inflexible Thinking

The other day Michael's teacher came to my room to tell me about a little incident.  She was in a meeting, so she didn't witness it firsthand, but the Title 1 teacher that works with second grade did witness it.  Michael has a new boy in his class.  Many of the classes are given a number at the beginning of the year.  Your number is because of alphabetical order.   For example Michael is number 4, because his last name is Johnson.  There are only 3 other students with last names that are before letter J.  Michael has number 4 on his crayon container, and he lines up as the fourth student in line no matter where they go.

The new boy enters the picture, with a last name that starts with a letter before Michael's "J".  Instead of moving everyone down a number (telling Michael he is now number 5 instead of number 4), they give the new boy #16.  This is suppose to help so everyone after the new boy doesn't have to change his number.  So in Michael's mind, #16 is at the end of the line, so the new boy needs to line up at the end.  This is not the case because they still put the new kid ahead of Michael because of alphabetical order.

Make sense so far?

Well, not to Michael.  For an autistic child who thrives on order, this is totally wrong.  If the kid is number 16, he should be at the back of the line.  So Michael said this.  He got mad.  Then he said, "And he is black so he needs to go to the end of the line!"  WHOA!  Wait a minute!  Our family is practically the most culturally diverse family around.  We expose the children to all religions, different cultures and there really isn't a prejudice bone in any of our body.  So why in the world did he say that?

I guess a few days before, they were reading in the kids magazine about Rosa Parks and the whole bus incident and how blacks had to go to the back of the bus.  Yes, Michael they did....but that was the year 1963 or something!  Here is another case of a language issue and the typical autistic child not really comprehending a sense of time.

So the teachers had to explain to him that we do not treat black people like that, that the new kid isn't exactly black, he is Hispanic and they had to show him the alphabet to get him to realize that the boy's last name is close to the beginning of the alphabet.  This was very hard for Michael to accept.

When I talked to him about it yesterday morning, he put his hands over his ears and didn't want to hear about it.  I don't blame him, it is confusing.  Michael's little ordered world is now spinning out of order.  After I told Chris, he went as far to say, "Well, the teachers lied to him."  I asked Chris, "How is that?"  He said, "They really don't base things on their number, they do it alphabetically.  So technically they do not line up by number, they line up alphabetically.  Many autistic people do not tolerate lies at all, even if it doesn't seem like a lie to the "norm".  Things are in black and while for them, there is no "give" so to speak.

Luckily, Michael adapts fairly quickly.  He uses a lot of his strategies and coping mechanisms to move on.  This could have been a real disaster, but instead Michael turned it around.  He even made 2 clay owls in art class, and then when the new kid came and didn't have an owl to paint, Michael quickly gave up his extra owl to the new boy.  He is a sweetie and I'm very proud of him.  Yet this is just another example of how rigid one can be when you are "Somewhere Over the Spectrum."

Great School Year So Far

I must say that this year has gone off without a hitch.  Michael started second grade, and he is doing very well.  The day before school started our school had "Sneak a Peek" night.  This is a night where the kids can meet the teachers and see where their classroom is going to be so they are not as nervous on the first day of school.  Michael was excited to see his classroom.  His teacher has a pet lizard, probably the only class pet in the entire school.  I must say that she is a COOL teacher!

All of the other children were coming to visit and Michael sees a boy that was in his class last year.  I guess that this boy last year told a "lie" to him, or the teacher so Michael comes right out and says, "Johnny is a liar!"  He goes over to this kids mom and explains to her that her son is a liar.  I guess it must be difficult for some autistic people to monitor what they say.  It came out as bold as brass.  I nonchalantly went over to Michael and said, "Hey, let's go to your sister's room!  Let's go see Mikayla's second grade teacher."  I, of course did not want to confront the mother, who was looking in a state of shock.  I wanted to escape with Michael in tow and distract him from saying anything further about his little lying friend.  I just don't think Michael can sensor what he says at all.

Mikayla and Michael on their first day of school.  

Michael is honest.  I believe that most autistic people are the most honest people that you would ever meet.  He is definitely not a fence sitter like his dear old mom.  He does not lie, and when others tell a lie, it is pretty much as bad as being an ax murderer.  The other day he was reading on a program called RAZ kids.  (A really cool program for kids to read online), and he was on a fairly long time.  He finally says to me, "I must confess mom that I took the quiz for that book 8 times." 
"Eight TIMES!" I exclaim, "Why did you take it eight times?  Did you read the story first?"

"No, mom I just kept taking the quiz so I could earn the points."  So even if he "cheats", he won't lie about it, he comes right out and tells you point blank what he did.

Michael has had pretty good behavior.  We've only had 1 incident in 4 whole weeks of school!  He told me he had to visit the "Hokey Pokey Room"  (where you turn yourself around) because he was playing Ga Ga and got really mad at the kids.  The kids were trying to get him "out" on purpose.  He said they were making fun of him, and he was almost going to punch the boy, but ended up slapping him instead.  He was trying to control himself, he could of beat up the kid, but only did a medium-ish slap instead. 

He hasn't freaked out over any fire drill, and he hasn't had any other major issues.  I'm so happy that we are starting out with a great year!

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.

Rules Are Written in Black and White

As most of you know, when it comes to many people with high functioning autism, they think a lot in black and white.  Rules are absolute, and there is very little gray areas, or no gray areas at all.  I have talked about this before in one of my earlier blogs, but it hit home again today as I was taking Michael to swim team practice.
He was just about out of clothes, as I am a bit behind on his basket of laundry.  I went upstairs at 5:40 this morning to wake him up for swim team practice.  He woke up, almost cheerfully and I picked out some clothes for him because he was low on just about everything.  I found his baseball t-shirt, asked him if he wanted to wear jeans or his khaki pants, fished out the last remaining pair of underwear from the very back of his drawer, and told him to get dressed so we could leave for practice.  I walk down the stairs, hear him open his drawer again and shut it.  He comes down with a blue t-shirt that was a bit small on him, his baseball shirt no where to be seen.
We jump in the car and I ask him, "Hey buddy, where is your baseball shirt that mommy picked out for you?"  Michael replies, and deep inside I already knew the answer, "Mommy that shirt is for BASEBALL games, it is not for SWIM practice!"  I answer, "But Michael baseball season is over, you can wear your t-shirt, you can wear your red Philly's t-shirt."
Michael says, "NO mom, I need it for my games, I am going to wear it to my games!"  I explain, "Michael baseball season is over.  There are no more games this summer.  If you join baseball next year you will most likely be on a different team.  Now it is just a red t-shirt that you can wear anytime."
Michael has a slight puzzled look on his face, but seems to accept my explanation.  At the beginning of baseball season, we told  him that the t-shirt was for games, and games only.  He wanted to wear it to practices and just all around wear it.  So now that we set that rule, "The baseball shirt is to be worn only at game time," he still thinks that it can only be worn at game time.
Then we had another "black and white" scenario today.  Coach Margie was really working with the lane 1 kids in swimming practice today.  In order to strengthen the forearm, Margie had the kids swim and "punch forward" in the water making a fist.  Michael had a LOT of trouble with this.  He practically refused to do this exercise.  He told Margie, "I can't make a fist coach, if I make a fist I will punch somebody and beat them up!"  He believes that fists are only for hitting or punching.  It took Margie a long time to convince him that this was just a strengthening exercise.  That this way of punching the water will make him a better swimmer, especially with breaststroke.  Again we see the "inflexible thinking" dominate his thought process.

I remember when Dale, my step-son, was in middle school, and they had the D.A.R.E. program.  Dale was taught that alcohol and drugs were bad.  He never did anything like that, and would never even consider doing drugs or drinking alcohol.  Now he is almost 23 years old, and I mentioned one time if he would like a drink or a beer.  "Oh no MOM, alcohol is really bad.  I can't do that!"  There is no gray area for him.  He will never sit down and have a glass of wine with dinner.  One time he saw me pour a little red wine in some spaghetti sauce, and refused to eat dinner that night.  I had to explain to him later that the alcohol cooked out of the sauce or evaporated and it only left a little flavor.  I'd love to hear from the rest of you who have autistic children or are autistic yourself about times when everything is just black and white.  I'd love to hear your black and white stories, when rules are absolute and the thinking is rigid and inflexible!

Hitting

Michael does not usually have severe behavior issues, but we told the school to keep behavior management in his IEP.  It is not a question of "if" he is going to blow up, it is "when" he is going to blow up.  Recently, it has been happening more often.

I don't know why he is physically acting out more than he has in the past.  He tries very hard to go through all of the steps of calming himself down.  He has been trained in these various strategies for a long time, but he is hitting.

We went to our math playdate on Sunday.  Approximately 6 children go twice a month to our friend's house.  My friend is a former teacher, and actually a former behavior specialist, but she teaches our children advanced math. Her own son is in the group, and in Mikayla's class at school. Both of my twins go as they are both very high in math.  They spend half of their time learning and doing fun math activities, and the other half of the time just playing.  The math time was over, and the boys of the group were playing tag, Michael included.  When I went to pick up the twins I found out that Michael had basically tackled one of the boys to the ground and started hitting him.  My teacher friend and talked Michael down and said Michael stopped and got back into control fairly quickly.  Michael was "mad" that the other two boys weren't  "listening" to him.  I told Michael that was no reason to hit!  That he needed to use his words.

I'm starting to worry a bit more about him.  I don't want him to be physically acting out.  I'm afraid that we will lose good friends.  I'm afraid he will lose out on fun activities.  What if our friends say, "I just don't want Michael over anymore because he will lash out physically?"  The boy he was hitting was a solid, strong first grade boy.  Michael has been in school with him since kindergarten.  I don't understand.

I guess I always thought that autistic kids, as they mature, will develop better coping mechanisms.  I always thought that autistic kids were more "out of control" when they were younger.  I didn't expect Michael's hitting to get worse.  I didn't expect his anger outbursts to become more prevalent.  Maybe he is hitting more because it is summer and his life is not as structured or predictable?  Maybe this is a phase he is going through? 

Maybe some parents out there who have HFA children who are a bit older than Michael can shed some light on the situation.  Is he going to continue to get worse?  Is the hitting going to increase and increase?  Will he work his way out of this? 

Sometimes Forest-Gump-Like

We started our beloved swim team on Wednesday.  Michael was so excited he couldn't sleep.  He woke up at midnight, 2:00 AM, 4:30 AM and finally we just got up because we had to be at practice by 6:15 AM.  He didn't want to miss it.  He did NOT want to be late.

Michael (second from the left) on his first day back with the Marlins.  Good eye contact and smile!

We get to practice, and instead of swimming in the "baby lane" (lane 6).  Michael is sure that he can go to a different lane.  He ends up picking lane 1 which is filled with older kids (10 and over) and mostly newer kids to the team.  Michael automatically ends up swimming faster than everyone in that lane, and so this little skinny 7 year old autistic child ends up being the "lane leader".

Wednesday he got a "little mad".  One girl kept telling him not to "cut in line".  Coach Margie said that it was ok that he was mad, she would have been mad too.  She talked him out of his mad, and basically told the girl that Michael can cut, because he is faster.

Today they were practicing flip turns.  Michael was doing somersault after somersault in preparation for the flip turns.  He is the only one in his lane who can actually do a flip turn.  He easily swims to the wall, over he goes and pushes off.  He looks at the other 12, 13, and 14 year olds standing there watching and asks them to go try.  None of them even want to attempt this, so Michael spends the next 10 minutes doing flip turn after flip turn.

I was the excited mom just beaming from the balcony.  I told the lifeguard, Marcus, to go over and see if he could get the other kids to do some flip turns.  I told him to encourage Michael to do some more because he had stopped and kept trying to wait for the other kids to actually do their turn.  So Marcus walks over and says to Michael, "Michael do a flip turn for me!"  Michael automatically does a somersault where he was standing.  Marcus says again, "Michael, do a FLIP turn for me!"  Michael again does a somersault from where he was standing in the pool. Finally Marcus points to the wall and says, "Michael swim TO the wall, make your flip turn there, then come back here."  He signs this as he says it.  Michael then says, "OHHHH!"  Then he proceeds to do another really good flip turn.

Run Forest Run!  Swim Michael Swim!

So I am thinking this swim practice is going very well, almost spectacular!  No melt downs, no mad faces.  All of a sudden, Michael gets out of the pool and sits on the side.  He is staring at his hands. "Uh oh" a little voice says inside of me, "He is staring at his hands."  This is a sure sign he is getting lost in his own thoughts or becoming very "spectrummy".  I watch carefully.  I tell Marcus to go back over there and check with him.  Too late, coach Margie is already there, but he isn't getting lost in his hands, he isn't checking out, he actually is having a conversation with her.  A few minutes later he gets in the pool and all is well.  What was it I wondered?

I find out later that Michael was concerned about his hands.  "They were all wrinkly mom!  I'm going to have to stay out of the pool!"  I said, "NO BUDDY!  That is a good thing.  It means you are a really good swimmer!."  Molly (16 year old friend who lives with us and is on swim team with the twins) says, "Yeah Michael that is called PRUNE hands.  Your feet will get that way too.  Your skin is soaking up the water.  Don't worry buddy, it is a good thing!"  So we finally convince him that wrinkly hands is not a life or death situation and that he can continue to swim.  In fact the more wrinkly your hands are, the better swimmer you will be.  :)

Sometimes Michael comes up with the funniest things.   Sometimes he just says things like Forest Gump would, or you can see when something "dawns" on him.  I guess it is a part of his personality, and shows that he is definitely somewhere "Over the Spectrum".

Look...WITH YOUR EYES!!!

Sometimes Michael's ability to understand directions can be down right frustrating for me.  I could practically pull my hair out when I ask him to find his basic everyday things. I swear if the kid's head wasn't attached to his body, he'd lose it.

The other day I said to Michael, "I need to see your baseball schedule, I put it on the coffee table.  Will you go get it for me Michael?"  So Michael says, "Yes Mommy!"  Ten minutes later he is still wandering around the living room/dining room area.  "Mommy, I don't see it."  He is closer to the dining room table, not close to the coffee table at all.  "Michael, it is on the coffee table, 3 white sheets of paper, you know....the coffee table, in front of the red couch."  This time I practically walk him to the coffee table and point at the table.  Well, that didn't save me a bit of time!  Then I wondered.....does he even know what a coffee table is?

The 1/2 pair of shoes!

We have tried to make things very routine.  Michael has a set "cubby" where he is suppose to keep things.  We have labeled all of his drawers in his bedroom, so he knows where things are.  He keeps his baseball outfit in his bottom drawer.  He keeps his karate suit in his karate gear bag that is located in his cubby.  The swim suits and goggles for swim team are always suppose to go in the pink swim bag that mommy carries to all meets and practices.  Even though his shoes are suppose to go in his cubby,they don't always manage to get in there.  As I am writing this right now, there is a pair of shoes under the table, two and 1/2 pairs  of shoes in our bedroom, 1 pair of flip flops under his blocks in his bedroom and who knows where any other shoes are located.  I don't think even one pair of shoes is located in the actual cubby. *The 1/2 of pair of shoes is a teal green platypus

Dale, Mikayla, Michael, Matt (future son in law) and Amora

shoe in the Van style.  Finding shoes is a major stressor every day of our lives.

After school when he gets off the bus he often gets distracted and leaves his backpack in the middle of the driveway.  The other day I came home and noticed a pile of something under the  bushes.  Yes, lo and behold, it is Michael's backpack and jacket.  The front door to the house is left wide open.  Yes indeed, my Michael has been here!  "Buddy,"  I call to him, "your backpack is under the bushes.  It is suppose to go in your cubby!"  If I did not point this out to him, he would be in major melt down in the morning when he "can't find his backpack"!

This inability to find things is a cause for major melt downs at our house.  I try to start getting Michael ready for an event at least an hour before we actually have to leave.  This does not do me any good, because inevitably Michael will not be able to find something and we will be late to the event.  I never used to be late people!  Being late is my biggest pet peeve!  Having an autistic son, I have learned to accept that our family will be late.  SIGH!

So it is time for our baseball game.  I had Michael get on his baseball outfit early. He has everything on except for his socks.  He walks through and drops one on the stairs.  He finally comes through to the living room, sits down and only has one long blue sock.  "Michael, where is your other sock?  It was in your baseball drawer, like always!"  It got lost in the two minutes it took him to walk from his bedroom, down the stairs and into the living room.  We find the elusive sock and get that on.  "Michael, get on your cleats.  They are in your cubby where we keep ALL of your shoes."  He comes back, but comes back with the wrong cleats.  He comes back with the size 2 cleats, and I just had to buy him size 3.  Back we go to the cubby to claim the right pair of cleats.  Thank GOD the cleats were in the cubby!   Ok, we are home-free right?  WRONG!  I'm in the car now beeping for Michael.  Michael is looking for his baseball mitt.  He can't find it.  He ends up standing in the middle of our front lawn screaming his head off and having a melt down.  We are, as always, late to the baseball game.   Now I have to calm him down and convince him that we should go to the game. 

We had this problem too with my step son Dale.  He would lose something, I would tell him EXACTLY where to find it.  He would come back with, "I don't see it."  I would go into explicit detail, "It is in the white bathroom on the white cabinet, next to the pink mouth wash!"  Dale says again, "I can't find it!"  Finally, in total exasperation I scream, "LOOK WITH YOUR EYES!!!  AAAAHHHHHHHH!"

Again I ask all of you parents out there.....is this typical of a spectrummy kid?  Do they all lose everything?  Everyday?  I don't know where the other shoe, you know, the teal platypus Van style shoe.   Maybe it got lost, Somewhere....Over the Spectrum.

Dare Devil

I do not believe that Michael is fully aware of danger unless it is explicitly taught to him.  He is quite the dare devil and will think nothing of climbing a 30 foot tree to the very tippy top and balance precariously on the branch.  He will think nothing of climbing a pole, fence or other vertical structure and call down and wave to us like it is as easy as walking across the lawn.

At the tippy top of the apple tree.

I'm not sure if he is just a risk taker, or if most autistic children are totally unaware of the consequences that might happen if they push the envelope a little further.  We went to Universal Studios this spring and Michael thought nothing of going on the scariest, most terrifying roller coasters!  He was even very disappointed if he didn't make the height cut off.

I came to the scary realization the other day that I went out to mow the lawn.  Michael was suppose to help me by gathering big sticks and rocks that might get caught under our lawn mower.  Too many times I've run over a brick or other majorly hard object and then had to bring the mower in for repair.  Michael was happy to gather sticks and rocks and get them out of my way, he had done it before for daddy.  As I am happily mowing the lawn and getting our property back to a decent state, Michael would grab a stick, dance off and throw it over by the tree line.  He mostly was far away and jumping up on old tree stumps and skipping around by the drive way.  Then as I was looking at some big pine cones, and asking if he could get them, his hand was dangerously close to the front of the mower.  Chris was watching from up by the garage by his workshop.  Chris came running down screaming for me to stop.  Luckily I realized it just in time and pulled the lawn mower back, shutting it off, otherwise would would have a son with 5 less fingers, or perhaps one less hand.

At the tippy top of the monkey bars.

Chris was shaken to his core.  I had never seen him like that before.  He kept saying over and over again, "He isn't NORMAL!  He isn't NORMAL!  You can't have him that close, he doesn't realize!"  It made me wake up and realize that I had been treating Michael like an average kid.  I didn't take into account that he does not comprehend the full implications of being that close to a lawn mower with sharp blades.  He has difficulty inferring what might happen.

Michael is a very innocent soul.  He is so sweet and good.  He just wanted to help mommy, and even though he was taught some of the dangers last year, I'm not sure he remembered everything about picking up sticks in front of a lawn mower.

It has taken Chris over two years to teach Michael about crossing our street in order to get to the bus every morning.  Michael knows what he has to do when the bus comes.  Can he apply it to just crossing the street to go over to a friend's house?  Applying rules to other situations is also a hurdle for him, and I suppose for many autistic children.  

I was sad that Chris kept telling me that Michael isn't normal.  I want to scream back, "Yes he is!  Yes he is!"  He is smart, loving and a great boy!  He goes to the public school and has friends."  Yet I know deep down that Michael is special.  I don't need to treat him with kid gloves, but I have to be more careful with him, especially when it comes to dangerous situations.  I need to make sure I explain things so that he understands, and not take for granted that he has so many coping strategies he appears to be "normal."

I love you Dare Devil Michael, I love you so much that it hurts.  This is just another area in your life that I have to be extra careful, and realize that you are "Somewhere Over the Spectrum."

Melt Down Mickey

Last week I took my family to Orlando, Florida to see Mickey Mouse and also Harry Potter at Universal.  It was a trip that I had been promising my seven year olds for two years.  I was determined to go, by hook or by crook.  Last year there was no way we could afford it.  This year, Chris got a great job, and said we could go.  He didn't go with us.  This was partly because he just got this new job, but I also think that he does not "do" crowds.  It is our belief that he also is on the spectrum in some way.

Mikayla, Mickey Mouse and Michael

So we pack our bags, buy tickets to Disney (1 day) and Universal (2 days get one free), buy plane tickets, make arrangements to rent a car, pay for a week at a vacation house and get ready to go.  I was so excited to give the children an experience of a lifetime.  I also bought plane tickets and theme park tickets for Chris's older children, and son in law to be.  (Technically my step-children, but I feel like they are my own blood anyway)  I knew I could manage this.  I have traveled with the twins alone before.  I had planned for everything down to the last minute.  Planned for everything except the fact I was taking two autistic children to a loud, crowded place that wasn't predictable.

Luckily Michael only had three melt-downs.  Melt-down number one took place after the very first ride we went on, the Harry Potter ride in the castle.  Michael was overwhelmed with this ride, and scared of the dragons and dementors.  He wanted to get away from the castle ride and go on the roller coaster.  We were not very organized and we were waiting for some of the party to use the restrooms.  Then Dale lost his wallet and cell phone, and Amora wanted to go into the gift shop to buy the Harry Potter DVDs.  Michael was frustrated and started yanking on my arm.  He got mad and started hitting me and kicking me.  I got down on his level and said, "Michael I promise we will go to the roller coaster, Dale has lost his wallet....all of his money.  This is very serious buddy."  He then calmed down a bit, but it was getting crowded and noisy.  He then put his fingers in his ears and still had that mad look on his face.

Michael and Sissy at breakfast at the vacation house.

Melt-down number two happened when he was playing in the vacation house pool.  My sister Aimee and her new fiance, Jim, had joined us there.  Jim was fooling around with Michael and pushed him into the pool as a joke.  Michael did not think this was funny and came out of the pool swinging.  He started hitting Jim very hard.  Jim hasn't been around children, much less a high functioning autistic boy.  He really didn't understand.

Michael getting ready to swim

Melt-down number three was at Disney in the Beauty and the Beast castle.  I was trying to order for all six of us and everyone wanted dessert too.  Michael told me, "chocolate cupcake mommy", so I had it in my head that I was ordering three chocolate cupcakes and three strawberry.  At the last minute Michael changed his mind to lemon.  I wasn't paying attention because the place was so crowded.  Michael started screaming and having fits.  We brought him to a quiet room (I still can't believe we found a table in the corner of the most quiet room) and I got down on his level to talk to him quietly and calmly.  He kept screaming, "YOU DON'T LISTEN TO ME, NOBODY LISTENS TO ME!"  I said, "Hey buddy, mommy is listening to you now.  My eyes are looking at your eyes, I am facing you.  I want to hear what you have to say.  I want to help."  I was speaking in a very calm, slow and soft voice.  I was giving him all of my attention.  He said, "Mommy I wanted a lemon cupcake.  I told you and you didn't listen."

Dale, Mikayla, Amora, Matt and Michael

My brain tried to relive the whole waiting in line for an hour to eat lunch, getting everyone's orders, and remembering the whole cash register scenario.  At the beginning of this whole lunch experience he did tell me chocolate.  At the register, I think he did change his mind and ask for lemon.  I was just as overwhelmed as he was.  I finally said, "I'm sorry buddy!  Mommy made a mistake.  I heard you wanted chocolate at the beginning.  When you changed your mind, I wasn't listening to you.  I'm so sorry.  It is mommy's mistake."  He then turned his behavior around and said, "That's ok mommy, I just want to be like Sissy and have the same as hers."  Luckily Amora had ordered a strawberry cupcake, as had I.  I told him, "Michael, Sissy got strawberry, what if you take mommy's strawberry cupcake and then everything will be fine!"  He agreed to this proposal, and any more possibility of a melt-down was averted.

Later on that day, I noticed a mom with a boy who was walking around with headphones on.  I smiled, knowing that her son was probably on the spectrum somewhere.  I then could have kicked myself for not remembering to bring Michael's deadphones.  Maybe some of the melt-downs could have been eliminated.  Yet, overall I think he did very well.  He got back on track quickly.  The melt-downs didn't last too long.  His coping strategies are getting better.  I am actually very proud of him.

One of the days on our vacation, Michael stayed back at the vacation house with me.  I sent the older kids with Amora to use the last day tickets at Universal.  It was important that Michael have some down time.  We went out for ice cream and swam in the vacation house pool.  Michael definitely needed a break from the hordes of people.  I'm glad I went on this vacation and that all of my children got to experience the whole Disney/Universal thing.  Next time, if there is a next time, I will not try to pack so many theme parks into a week.  We will take the time to smell the roses and plan for a more calm, serene vacation.  We will plan it more for our autistic kids, and not just mommy's "dream" of what a vacation should be. 

Baseball Season

It is spring, and Michael is signed up to play baseball.  He really loves this sport even though he isn't all that great at it.  Perhaps if we spent more time practicing catch in the yard, he might be better.  Even though we are not big sports enthusiasts, somehow Michael fell in love with baseball.  So it doesn't matter that he hasn't played since his T-ball league when he was a mere four years old, he just wants to play baseball.

The other day I got the call from his coach, "We will start baseball this weekend.  Michael's team is called the Phillies.  We will play at the American Legion field, and there will be a field clean up then parade."  I get off the phone and tell Michael, "That was your coach, you will be on the Phillies."  Michael jumps up and runs upstairs, quickly uncovering his blue baseball mitt that he had when he was four, and running back down to the kitchen.

"I got my mitten!  I got my mitten!"  he exclaims with exuberance.  "Michael it is called a mitt!"  I say with a chuckle in my voice. 

Michael says, "I can't wait to play baseball, but mom I'm not very good at hitting the ball.  When I hit the ball I have to go to number one and number two and number three?"  It takes me a split second to figure out his language on this one.

"Yes, Michael you run to first, second and third base.  They are called bases.  Then you run home." I say, clarifying his previous statement.

"I have to run to my house?"  Michael says. 

"No Michael, you run to home base.  It is a flat pentagon shape on the ground."  Here I am thinking that his autism strikes again and that he is taking my words totally literally, when he says, "Mom, I'm just joking, that was in the Amelia Bedelia book where she runs home to her house after baseball!"  Whew!  Not only did Michael not take that literally like autistics so often do, but he actually made a joke!

"Yes Michael, Amelia Bedelia is a very funny character isn't she!"  I say with relief in my voice.

Michael is such a wonderful child.  He is sweet, kind and now is developing a great sense of humor.  Everyday he brings joy into our lives, even when he is being very spectrummy or having a melt down, we are so lucky to have this kid.  Chris often says that his life started again when we had the twins.  Michael brings the spark of life and love into our very souls.   Thank you God for bringing him to us, we  wouldn't change him for the world.

It's My Turn

Recently I've gotten a few comments from Michael's first grade teacher about him getting angry and frustrated because he doesn't get enough turns to talk.  There is a communication journal that goes back and forth between Michael's teachers and home, so we can share if he's had a good day, bad day, or if something just set him off.  Not being able to talk and share his stories while the teacher is teaching, has really set him off lately.

I guess Michael has been mad at the teacher because she doesn't give him enough turns to "tell stories".  According to Mrs. B, Michael wants to share what is happening and is making a lot of connections to what they are talking about at school.  This is a good thing in my opinion.  I am happy that he is trying to share and that he is connecting to the world around him.  On the other hand, I can see what Mrs. B is saying, that she doesn't have time to listen to all sixteen of her students share their stories.  She often lets Michael share a story, but he sometimes wants to share two or three stories.  She has told me that she gives him more chances to share than most of the other children.  If Michael doesn't get to be heard every time he raises his hand, he gets mad and has a fit.

I tried talking to him about this the other day.  I said, "Michael, if Mrs. B lets all of you share stories all of the time, then the whole day would be sharing stories and there would not be a lot of learning going on."  He seemed to understand this concept.  I'm not sure if he's fully "digested" it yet.

My oldest daughter had a great idea.  She said that we should supply Michael with sharing sticks.  These popsicle sticks would say, "Share a story".  When Michael is out of sharing story sticks, he is not allowed to share anymore stories.  This would give him a finite limit on talking and perhaps since it is so visual, he will not get as mad or frustrated. 

I think I will recommend this strategy to his teacher.  Perhaps this will work, perhaps not.  Anything is worth a try.  It is hard for me to watch my child get mad and frustrated over a simple situation.  I guess for someone over the spectrum, it isn't a simple little thing, it is a big deal. 

Many autistic children that I have dealt with in the past do not have this problem.  They usually do not share comments or stories so freely.  In my opinion, Michael is breaking the mold again for what I've come to recognize as typical behaviors of autistic children.  Sometimes he baffles me, because in one moment he shows lots of autistic idiosyncrasies, and in another moment doesn't seem to be autistic at all.

I would like to hear from other moms with HFA children.  Does your child want to talk a lot and share stories?  Are the stories relevant to the conversation or are they totally off topic?  Does anyone out there have any experience with this problem?  Does your child get mad and frustrated if he/she doesn't get enough turns to share?  Is this solely an attention seeking issue?  Please feel free to comment!

A Bad Day on the Bus

When Michael was in pre-school he rode the little bus to the public school.  Part of this was because he was so little, and the other reason was because the little bus had an aide on it to help children who had disabilities.  When Mikayla started going to the public school, she rode the big bus.  It seemed silly to have the twins ride separate buses so we decided to try Michael on the big bus.

Michael actually seemed to like the big bus as opposed to the little bus.  Ironically the big bus was quieter than the little bus.  The little bus seemed to have a lot of children that had behavioral challenges, so the noise level and physical activity was a bit much for Mike Mike, especially with his noise sensitivities.

So time marched on and we just stuck the twins on the same bus.  In pre-school and in kindergarten everything went "mostly" ok.  Mikayla, being the little "mommy" that she is, took care of Michael and I never worried about him being out there alone.  This year, things have changed a bit.

It all started at the beginning of this year when Michael went to sit with his best girl friend on the bus, and kissed her.  Michael absolutely loves this little, shy girl and is quite protective of her.  He goes on playdates to her house and actually calls her on the phone.  Unbelievable right?  So he kisses her and some of the older students see this.  They tease him and call him "Lover Boy."  Michael takes this teasing for a few more days, then hauls off and hits the kid.  Michael then gets a behavioral ticket and has to visit the principal the next day.  All is sorted out and the other boy promises to stop teasing Michael.  Michael says he will not hit the boy.  All is well and good in the happy little town of Jaffrey, NH.

Yesterday Michael comes to me and says happily, "Mom, I finished reading The Magic Tree House #6 on the bus!" http://www.magictreehouse.com/# I am thrilled being the reading teacher that I am, and I say, "That is great honey!"  I give him a high five and I'm all smiles that Michael is keeping occupied on the bus.  Then he says, "But there is bad news mom because I hit a boy."

Uh Oh!

Me: Why did you hit this boy Michael?

Michael:  He was annoying me as I was reading my book.

Me:  Where did you hit him?

Michael:  In the face.

Me:  How was he annoying you?

Michael:  He was making noises as I was trying to read my book.  I didn't like his noises.

I am sure that I will get a nice little visit from the principal and boss up in my Title 1 room sometime next week.  I'm just waiting for the day that Michael will get kicked off the bus permanently for hitting or some physical contact.

Michael learning self-defense in karate

Although there are unpleasant consequences that occur when a child gets into a fight or ends up hitting another student, in the long run, it might be a good thing some of the time.   Too often autistic children are bullied, teased and just plain 'ol made fun of.  These children can only take so much of this.  This situation reminds me of the time that our older son, Dale, was teased and made fun of.  Dale was very quiet and just "took it" for months and months.  Finally Dale "broke" and hit some boys that were making fun of him.  Unfortunately he had a sharp implement in his hand at the time.

Dale was suspended from middle school for a few days, but you know what?  He was never made fun of again.  If Michael gets into a situation where he is in a fight and suspended, Chris says that the bullies will never bother him again.  We are willing to put up with a few days of suspension.  As Chris says, we do not want to grow "Sheeple".  (People that act like sheep and don't stand up for themselves)

There are a lot of anti-bullying programs out there today that are excellent.  We just had a wonderful TIGER assembly at our school TIGER Anti-Bullying Performance.  Even though everyone is on high alert for bullying, it still happens and Autistic kids are prime targets.    I am caught in a Catch 22 because I'm a teacher.  We always tell our students to talk out the problem or use conflict resolution strategies. Teachers do not encourage out and out fist-fights!   The mom in me is saying, "Sock it to 'em!  If you hit and hit hard, they will know that you are tough and can fend for yourself.  They won't bully you again."

I have heard that the rate of suicide for autistic people is higher than it is for "normals".  Is there any wonder why?  I hope that Michael will be strong and fend for himself.  I hope he won't fall into the all too common trend of an autistic child having low self esteem.  I hope that he will stick up for himself, but also learn strategies to remove himself from annoying situations, or tell kids to stop if they are teasing.  I hope he will be able to ride the bus for many more years, and happily ride it "somewhere over the spectrum" to a happy ending.

Point of Reference Please?

Many autistic children seem to have expressive language difficulties.  This issue tied with their social awkwardness makes it difficult for them to express their thoughts and have socially acceptable conversations.  Often times these children, and adults too are not sure of what to say.  They have many ideas in their heads, it is just trying to express these ideas to the rest of the world that is problematic.  There seems to be a malfunction in the wiring.  As Christopher says, "Their input works just fine.  It could be a processing issue in the brain or the way they output information."

Yesterday we had a meeting with Michael's teacher, speech therapist, counselor and special educator at school to find out how he was doing and to just get an update on his progress.  One of the big concerns they find is trying to figure out what he is talking about.  Michael assumes that the listener understands what he is saying.  He assumes you know all of the people, places and events in his life.  His speech teacher asked him, "Michael, what did you do this weekend?"  Michael says, "I don't know I don't remember, but I left my snowpants in Trisacy's car but not her car."  The speech teacher then spent a half hour trying to decipher the name of the person because of Michael's articulation errors.   Then she spent some more time trying to figure out who in the world was this person and why did he leave his snowpants in her car that wasn't her car?  She was extremely confused.  At the meeting, Chris and I clarified that Tracy and her daughter were living with us because they were homeless, and we were lending our van to Tracy. Michael did leave his snowpants in the red van, and the van does belong to us, Tracy is borrowing it.

All of the teacher's chimed in and reported the same thing.  Michael does not have sequencing in order.  Structured sequence lessons are just fine.  He can put pictures together and tell a story.  He cannot apply this sequencing skill to his own life and often has a warped sense of time.  The classroom teacher is working on sequencing as well in his writing.  She is doing the "four square" method where he puts his ideas down on four different blocks of the paper.  This graphic organizer is helping, but he still has a lot of trouble giving that background information that a reader or listener needs to comprehend the story!   Chris does not think that Michael thinks in a linear way.

Sometimes these children give incomplete thoughts.  This happened a lot with our older son Dale.  Dale also had such extreme social awkwardness that he would rather quote phrases from a TV show instead of trying to explain what he was thinking.  Out of the blue Dale would say, "She Made Half and English Triffle, and Half a.......Shepard's Pie!"  If you didn't know Dale, you would say, "What in the world is he talking about?"  Those of us that did know him, knew he was quoting from the TV show FRIENDS.  Dale would often blurt out something he had heard on TV.  It would feel at times like he was "RainMan".

Michael getting mad as he tries to explain something

How do we get our autistic children to fill us in on the background information?  How do we get them to preface the conversation with facts to help us understand their story?  How do we get these children to stop being frustrated when we can't understand them?  Usually by the second repeating of the story, Michael gets very mad and frustrated.  You can see the anger building up on his face.  How do we work with these children so that their teachers and friends can understand them?  Xander, one of Michael's best friends has said to me, "I don't understand what he is talking about sometimes.  I just nod my head and go along with it." 

Expressive language and social language is a huge issue with many autistic children.  I think it will always be a problem to some degree even after years of speech/language therapy and social skills teaching.  How can we make communication easier for these children?  What do you do to work on this with your autistic child?

PDD? Asperger's? HFA? What's the Difference?

Eleven years ago I met Christopher, and drove out to Maryland to be with him, sad to be leaving my 36 years of Midwestern roots but gaining a wonderful family in return.  The family included two step children in their early teens, and a history of autism in the family.  Being a special educator at the time (later getting my Masters as a Reading Specialist), I knew that I could handle Chris's son, Dale.  At that time I had been teaching approximately 14 years, mostly Deaf and hard of hearing children.  I had one pre-school in which they placed a non-verbal autistic child in my class.  That was the one and only experience I ever had with autistic children.  This child was a sweet boy, who did learn sign language and hid under my table for much of the day.  Back then, (1988), there were not many identified autistic children.  No one really knew about it, now the diagnosis seems to be rampant.

Chris's children lived with us on a part time basis, and part of the time with his ex-wife.  It was difficult for me to get to know Dale, as part of the time he was at the ex's house, and part of the time he disappeared into his own world.  Dale and Amora spent a lot of time on video games, and had the latest technology.  This was something extremely foreign to me, as I had been living and teaching in Iowa and had just recently acquired a cell phone.  The children did not go outside very much, and at the time I had arrived, they were not in any sports or after school activities.  At age 12, we finally bought a bike for Dale and taught him how to ride.

Dale, Michael and Amora

Having my special education background, I felt I was prepared to be Dale and Amora's mom.  Dale never showed any emotion, he had the typical characteristic of an autistic child with an expressionless face.  Dale was diagnosed as PDD-NOS  (Pervasive Developmental Delay, Not Otherwise Specified) I wondered what in the world that acronym meant.  I had heard of autism and Asperger's, but what was the PDD?  Luckily the school district in which I was working offered an excellent class on autism.  I studied the different labels of the spectrum carefully, and tried to decipher what makes a child High Functioning Autistic versus Asperger's?  What makes a child PDD?   Why aren't they HFA? A child that was labeled low functioning autism was a more clear definition for me.

Dale was functioning pretty well in the public school.  He was in regular classes and getting good grades (As and Bs).  Dale had a flair for math and writing.  He could build anything.   Any model that was handed to him he constructed with ease.  He would spend hours building KNEX and make interesting and intricate designs.  It would take him a mere five minutes to put together a model airplane or complicated lego set up.    Dale was labeled PDD, or was he really?  What do you do with a child labeled PDD?    This was the most vague label of all, at least it was to me.

In the autism class that I took they said that the characteristics of Asperger's was high intelligence, and limited signs of facial expression.  They said that Aspie kids generally do not have difficulty with language, just mostly social skills.  Asperger children usually have hyper-lexia, the ability to read fluently at a very young age.   Dale was intelligent, he didn't show emotion and had terrible social skills.  The one thing that went against the Asperger's diagnosis for him was that he had speech/language issues whereas Asperger kids generally do not.  Dale did go to speech and language, he had a mild articulation problem.  He had difficulty with expressive language and taking things very literally.  He did not understand figurative language such as idioms and jokes.  Dale did not learn to read at a very young age, he did not have hyper-lexia.   Could he be Asperger's, HFA?  Or was he PDD-NOS as the school psychologist had suggested?

Dale, Amora and Amora's boyfriend Matt, Six Flags

Later, when Dale was in high school we ended up taking him to a private psychologist.  Many forms and observations later, Dale's "label" was changed from PDD- to Aspergers.  I'm still not sure if that is correct, perhaps we will never know.  Yet he is definitely on the spectrum.....somewhere.

Michael does not have the "dead pan" facial expression that Dale has.  Michael shows emotions and hugs and snuggles constantly.  He does have difficulty with speech articulation and expressive language.  Michael is functioning well in the regular classroom, and is getting some extra gifted and talented time in math. Michael learned to read by the time he was two.  He "seemed" to be hyper-lexic, but as he reached first grade, that ability has slowed down and now he is in line with the average to above average readers in his class. Michael is intelligent.  He has some social skills issues, not nearly as much as Dale.  Then again, Dale was identified at a much later time and Michael had the good fortune of earlier intervention, consistent intervention and a mom who was a teacher. Very early on the doctors said that Michael was definitely High Functioning Autistic.  He had too much emotion and facial expression to be Aspergers.  Why didn't they label him PDD like they had done with Dale?  I just don't know.  It seems to me that they stick a PDD label on a child when they aren't really sure.  Since autism runs in the family, they knew it was autism for sure.  Maybe having the history in your family makes the doctors be more inclined to give the diagnosis of HFA.

It seems to me that there is a fine line between the Aspergers and HFA diagnosis.  There is also a fine line between HFA and PDD.  The label Pervasive Development Delay is a scary term to me.  The words "Developmental Delay" stand out and I automatically associate this with a child with impaired intelligence.  Developmental Delay is a term I hear when the school psychologist is waffling between labeling a child LD learning disabled or mentally disabled.  Michael does not have any intelligence issues, nor did Dale.  Their brains are just wired differently.  They are still very special people.  They are amazing and interesting human beings.  I'm proud to be the mom of two autistic boys, no matter what their position is on the wide and diversified spectrum.

Spring Concert for the Twins

The twins will have their Spring concert this Wednesday.  I'm looking forward to it, and at the same time emotional about it.  Mikayla has been singing leprechaun songs and bunny songs for a month now.  Michael is getting a bit fed up with her singing all of the time in the car.  The little songs have stuck in my brain, and you can often hear me singing in the kitchen, "Oh the leprechaun is smart and clever, he wears green and is rarely seen!"

"Oh, a spring concert!"  You say to yourself, "It must be such a darling thing!."  For me it is wonderful, and at the same time scary.  Last year as I was watching the twins, Mikayla was situated right in the middle, knew every word, had her eye on the music teacher, had fun with her classmates and was right at home with the whole "concert process."  Then there was Michael.

Normally I don't notice his autism.  Most of the time he is just like any other kid, with a little bit of unusual speech patterns, but nothing majorly stands out.  As I watched him at the concert last year, he was on the top row, all the way to my right.  He stood about 2 feet away from his classmates, had a look on his face like he was lost in a fog.  Sometimes he'd remember where he was and I could see him trying to form the words with his mouth.  He seemed to be a step behind all of the others (slow processing speed coming into play here), and not quite with it.  Sometimes it looked almost comical, especially the way he would turn to the side facing into the curtains on the stage.  Other times tears just came to my eyes because of the realization that he was acting quite like the others.

For some of the concert he pulled up his striped shirt exposing his belly. Other times he was sucking on his thumb or banging on his head with his fist.  For some of the concert he looked like he was going to run off stage. I was half laughing, and half crying from what it appeared to me as a very autistic kid.  Perhaps because of my special education background, I just have "eyes" to see all of these unusual behaviors.  I hoped that nobody else noticed the things I was seeing.  Maybe all of the rest of the parents just kept their eyes on their own gleaming child, and didn't pay attention to the kid on the end in the top row.

I'm hoping that this concert will go smoother.  I'm hoping that Michael will pay attention, not lift up his shirt, want to escape or suck his thumb.  We shall see.  I love this kid with all of my heart.  I know he is different, but maybe he can blend in for just one hour?   I'm always terrified that he will be made fun of or bullied because of his differences.  Wednesday is three days away, another day in our lives, another day for a mom with a child "Somewhere Over the Spectrum."

Internally and Externally Distracted

When we brought Michael up to the CHAD center at Dartmouth Hitchcock, Lebanon, one comment stood out in my mind about Michael.  The doctors there said that he was, "Internally and Externally Distracted."  I thought about that phrase again today as I picked up the twins from a Math Play Date.  (This is a play date in which my friend, who was a former teacher, gives the children an hour or so of more challenging math, then the kids have a fun play date).

Mikayla, Ethan and Michael playing with an IPAD

My friend, Tammy, who has these play dates for about eight first graders, emailed me the other day and said, "Michael never wants to eat snack while he is here.  He says he isn't hungry, and will continue to play a game, work on the computer, or solve problems.  Is there a food he really likes to eat?"  I told her that he liked blueberries a lot, but not to worry if he doesn't break away from what he is doing.  He gets totally engrossed in something, and it is hard to break him away from that, even to go to the bathroom.

So today I go to pick them up, and Michael is at the computer totally immersed in a new computer math game.  All of the other children are in the play room, playing or outside in the snow.  I go over to Michael and tell him that I'm there and it is time to go home now.  He looks up from the computer and says, "I'm really hungry and thirsty!"  Tammy had given the kids snacks hours before.  Michael said he didn't want any and continued to play the math games on the computer.  Tammy said, "Oh no Michael, I had bought blueberries for you....."  Michael smiles happily, "Blueberries!  Yum Blueberries!  I want some Blueberries!"  Then Tammy had to tell him that they were all gone because all of the other kids ate them all up.  Michael did not break away from what he was doing to eat his favorite snack.  So Michael settled for a banana.

As Michael was eating his banana, he started to hold his crotch and dance around.  Again he was so hyper-focused in what he was doing, he had forgotten to go to the bathroom.  This is a daily occurrence at our house and I know the signs as sure as I know the back of my hand.  I always have to say to him, "Michael, go potty, go potty NOW!"  He will always dance around like that then tell me he doesn't have to go.  He doesn't want to leave whatever he is doing.  It seems to be worse with computer time.
When he is not internally distracted, he can be externally distracted and not seem to pay attention to verbal directions.  Sometimes I think, "Could he be ADD or ADHD?  Could this just be his autism?  Is there a relationship between autism and ADD/ADHD?  Could Michael be misdiagnosed?"  These questions often come up in my head.

Michael and "Sissy" Amora at Christmas

I was talking with my step daughter Amora, the other day.  Amora is 24 and living on her own.  I became her "mom" about 10 years ago when she was starting high school.  She isn't a "step daughter" to me, she is just as much as my own as Mikayla is.  Anyway, she was saying to me, "Mom, I think I might be on the spectrum.  You know the whole time I was in grade school, middle school and high school I thought I was just ADD.  I've been reading your blogs about Michael, and I have a lot of the same characteristics as he does.  Maybe I was misdiagnosed and I have some form of autism.  I thought about that for a while, and it could very well be.  It runs in the family.  Her two brothers have it, and I think her father has it as well.  Chris's Uncle had it, but they didn't really know what to call it back then.  She really didn't have any friends, or any close friends.  She wasn't the kind of kid to want to go to the prom, football games or any social events.  She was on some medicine to help her concentrate, because we thought she was ADD.  Could we have been wrong?

Can autism look like ADD or ADHD and vice versa?  How do you weed it out?  How do you separate it?  Could Michael very well have both?  I'd like to know if anybody out there has figured this one out!