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?"

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".

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. 

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.

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!

Autistic Children and Their Siblings

Sibling Fun

Today I walked into school today, and realize I'm locked out of my classroom.  I am fortunate enough to not only work at an excellent school, but I'm also lucky that my twins go there too.  Our fantastic school counselor walks in a minute later and sees me sitting on the bench in front of the office.  She has been amazing with the work she has done with Michael.  I absolutely love her!  She immediately helps me open my door and says, "I've been meaning to touch base with you as a mom, not as a teacher."  My first thought was, "Oh it must be something to do with Michael."  Much to my surprise it wasn't about Michael at all.  It was about Mikayla.

The counselor then explains to me that Mikayla has been having some trouble dealing with frustration.  She has been quick to anger and can often have an attitude.  The counselor wants to put her in a group to work on managing the frustration and anger.  I immediately agree.  Now Mikayla will also be seeing the counselor once a week in a small group.  I'm very thankful for this.

Brother & Sister Love

I see Mikayla's anger/frustration issues as a combination of problems.  The first is that she is very bossy.  Her personality has been like that from the beginning.  She is constantly telling Michael what to do and acting "like a parent".  Secondly she is experiencing a conductive hearing loss right now, and it is a whopper of a hearing loss.  I know from teaching Deaf and hard of hearing children for a good portion of my career that she is probably exhausted trying to strain and hear what the teacher is saying all day. When you are tired you are likely to be grumpy and not handle issues well.  Then there is her independence, she doesn't want help from anybody.  She wants to do everything herself.  Finally I believe she is having issues because she is the sibling of an autistic brother.  I'm sure that many siblings who have a brother or sister in special education, or who have differences have some of their own emotional or behavioral issues.

Mikayla showing Michael how to dye Easter eggs

Since Michael is always being "reminded" of what to do or "cued in", Mikayla strives hard to be the opposite.  Michael is the one who needs help on a constant basis.  Help to tie his shoes, help to "check in", help to calm down after a melt down.  Mikayla again is the exact opposite.  She doesn't want help with anything and often refuses help.  Michael, although extremely intelligent, gets some extra attention.  I believe we try very hard to even out the attention, but Mikayla feels otherwise.   Mikayla feels like Michael gets more attention, so she is going to act out a bit to get attention too.  Bad attention is better than little or no attention at all, right?

I came to the realization today that siblings of autistic children might need to have some counseling or some time to work out their issues.  They need strategies, just as much as their autistic brother or sister.  They might need help to work out issues and deal with problems too.  Having an autistic child in the family can be stressful for the "normal" child in the family.  Even though Michael is probably the easiest spectrummy child I've ever dealt with, I'm sure that it still affects Mikayla in ways I've never realized.

Artistic-Autistic!

Michael has always been interested in art and drawing.  He will often take a pad of paper and draw/ doodle for hours.  His art teacher says that his art is more advanced than a typical child his age.  I have found that a lot of autistic children express themselves with art if they do not have severe motor problems or sensory issues with the type of media.

Cardinals in the Snow- Michael did this in kindergarten

Michael loves to put in a lot of detail and design.  He says that art is one of his favorite classes.  When he comes home, he usually goes through a pad of paper a month.  He loves to draw and he especially loves making mazes.  "Mommy,"  he says, "Come and figure out this maze!"  He has a big easel that is part drawing/part white board.  He can spend hours drawing on that as well.

I know that art can be used as therapy for many individuals who have autism.  I think that Michael found that out for himself.  It helps people who are under stress, many of our autistic children do have anxiety and stress.  I also think it is a great way for Michael to express himself.  When he draws he doesn't have to talk.  He doesn't have to use verbal language.  He doesn't have to answer questions, or explain anything.  Michael can just "be". 

Clowns- first grade

What is "Art Therapy"?  According to this website, http://www.arttherapyblog.com/  the definition of art therapy is:

Art therapy is a form of expressive therapy that uses the creative process of making art to improve a person’s physical, mental, and emotional well-being. 
The creative process involved in expressing one’s self artistically can help people to resolve issues as well as develop and manage their behaviors and feelings, reduce stress, and improve self-esteem and awareness.

How does your autistic child do with art?  Is it comforting for them?  Do they excel in this area?  Do they have trouble with fine motor coordination and cannot manage to produce art?  Do they have intense sensory issues that they do not like holding a pencil/crayon or paintbrush?  

I have worked with some autistic children who cannot bear to write anything.  They do not like holding a pencil and cannot take the "feel" of pencil on paper.  Most of these children who refuse to write because of a sensory issue, will often do better with dry erase markers on a white board, or use a paintbrush to paint.  I'm very curious if art helps children with autism.  Does the love of art vary with the severity of autism?  

I can only speak for Michael, and I know that art is very much a part of his life.  I'm very proud of his artwork.  I hope that he continues to show a love for art in the future.

Strategies for Michael

When Michael started kindergarten at Jaffrey Grade School, we met with the IEP team. Chris and I were insistent that Michael have IEP goals on behavior.  We wanted him to meet with the behavior specialist or counselor frequently and work on strategies to help him with melt downs and social skills. The team was hesitant at first.  Michael hadn't shown many behavior problems, at least not yet.  When we had gone up to the CHAD clinic at Dartmouth Hitchcock, Lebanon the previous summer, the autism specialist and the doctors there said that it would be imperative that Michael get on a behavior plan of some sort.  Their foresight and the way Chris advocates for his kids has helped Michael be as successful as he is today.

I don't think the teachers really took it seriously until Michael started hitting a child in his class for whistling.  The noise was extremely irritating for him.  From that point on, Michael has been seeing the counselor and working on different strategies and social stories.

Lifesaving strategy #1 Big Problem/Little Problem

The first strategy that has been very beneficial is the "big problem/small problem" chart.  This chart is posted on our refrigerator, and also at school by Michael's "quiet" area.  This is how it works.  We are in the grocery store the other day and I tell the twins that they can get a bottled water to drink because they were very thirsty from swim team practice.  Michael puts his water bottle on the conveyor belt first, Mikayla then puts her bottle down second on the conveyor belt.  The cashier rings the bottles through and Mikayla takes the first bottle that comes down the line.  Now the water bottles are EXACTLY the same.  You guessed it, Michael starts to have a melt down.  "THAT'S MINE!" he shouts and almost starts to slump to the floor of the supermarket.  I calmly say, "Michael?  Is that a big problem or a little problem?"  Michael takes in a deep breath, "I think it is a little problem."  I say, "Right Michael, the two water bottles are the same.  It doesn't make a difference.  You will both get to drink the water."  Major Melt Down AVERTED!!  Yea for the Big Problem/Little Problem chart and for months and months and MONTHS of working on this strategy!


Lifesaving strategy #2- STOP

This is how this strategy works for Michael.  Mikayla is singing the songs from music class for their spring concert.  Mikayla likes to sing and take over most conversations.  We are in the car going to swim team and Mikayla is singing the leprechaun song.  Michael doesn't want to hear the song anymore and wants to play the "riddle game".  Mikayla, not wanting to stop the singing, continues to press on becoming louder and more annoying to Michael.  Now instead of Michael yelling, having a fit, crying, hitting or biting her, he looks at her and tries to make a polite face and says, "Please stop".  Sometime he forgets the other part of the process (naming what exactly he wants her to stop), but he is really trying!  Melt down averted.

The other day the twins were arguing about something at the dining room table, it started to escalate and I could hear Michael on the verge of a melt down.   I called in to Michael, "Michael look at the stop sign on the refrigerator!"  He broke off the argument with Mikayla, ran into the kitchen, read his sign  quickly, said under his breath, "Oh yeah, right!"  Then he ran back in and started to apply the strategy and asked Mikayla to stop whatever she was doing.

These strategies not only work for my HFA Michael, but they work for his bossy and sometimes irritating sister!  I think it would work for many siblings! 

Lifesaving strategy #3- Check-In

When we see Michael getting upset and frustrated, not listening to directions or getting "stuck" on one train of thought (inflexible thinking), we ask Michael to "check in".  We use those exact words, "Check in Michael."  We take both of his hands and squat down so we are at his level.  He doesn't have to look at us, as direct eye contact can be almost painful for autistic children.  He DOES have to acknowledge us and say, "Yes, I'm checked in."  Then we have his attention and he is in a position to calm down and listen.  We offer hugs at this time too because he needs that deep pressure.  Usually the "check-ins" help solve a lot of issues.  We ask Michael what the problem is. We give him a lot of wait time and try to understand what he means exactly (sometimes his expressive language is hard to figure out and he can't find the words to explain what he means). 

These strategies are working for Michael.  I don't know if they will work with all autistic children, but maybe if the strategies help somebody, then this blog would be worth it.  Even if it helps only one family. 

Sensory Overload

We are very fortunate to have a child who is High Functioning Autistic and not have too many sensory issues.  I have seen many other children with way worse problems with touch, taste, sight, smell and sound issues than Michael.  Still, on occasion, we do get the melt down from sensory overload.  It mostly comes in the form of sound and sometimes touch.

Michael's sensitivity to sound depends on a lot of things.  Sometimes when I think he will react to a sound, he doesn't.  Sometimes he reacts to sound that I didn't think would bother him.  Overtime we are learning what might and might not set him off.  It also depends on if he is tired or sick.

The first sound that is too much for him is the fire alarm at school.  He has his dead phones that he wears when that alarm goes off.  He also has difficulty in the gym with large assemblies.  He will bring his dead phones and will put them on through various parts of the assembly.

Michael with deadphone and having difficulty with noise

Church is another area that he has a lot of difficulty.  When we moved to Jaffrey, NH about a year and a half ago, I was trying out various churches to see what would be a good fit for our family.  As I began the church shopping, I went with the twins to some Christian churches that had Christian rock bands.  The noise from these bands was too much for Michael.  He would stand next to me, covering his ears.  He even got to the point of literally hitting me.  He needed to get out of there and I had to make my excuses.  "Sorry, he is autistic and the music is too much for him."

The old fashioned churches seem a lot better.  Piano music doesn't set him off, but when a church would play the big organ that was enough to make him want to escape right away.  When we lived in Hinsdale, NH and we were going to the United Church of Winchester he knew what to expect.  He would stand in church with me and sing out of the hymn book.  He seemed more comfortable there, and we need to find a church around here that is similar in nature.

When he goes to karate that takes place in that same school gym, he has a hard time with listening.  He has gotten a lot better, and he is getting used to the acoustics.

One day I got the brilliant idea that the twins were going to help with "other" chores.  Michael was standing there and I said, "Here Michael why don't you vacuum for mommy!  Just vacuum the rug in the dining room."  I went off to do other chores and get Mikayla started on something.  All of a sudden the vacuum goes on and I hear screaming.  Chris comes out of his office and quickly shuts off the vacuum.  He gave me a look that said, "WHAT were you thinking???!!!"  That's just it, I wasn't thinking.  The vacuum was obviously too much sensory input for Michael.  Duh!

Michael will sometimes get frustrated too if there is "too much talking".  If an adult or anyone else is explaining things and going "on and on", Michael will tell them to stop talking.  When he was younger he would stick out his hand to indicate, "stop".   Too much "talking at him" will get him confused, frustrated and could possibly lead to a melt down.

Another area that is less of a problem is touch.  He often likes deep pressure such as hugs or holding.  He has never had to be "brushed", but does enjoy the deep pressure of the roller at his old school in Hinsdale.  Michael likes to touch knitted things.  He has collected all knitted blankets that were made for the twins when they were born, and has claimed them all as his own.  His blankets or "woobies" come in all colors, blue, white, seafoam green, yellow, purple and he has even taken over his sister's pink woobie.  When he holds his woobie, he often sucks his thumb for comfort.  He says he LOVES his woobie and will often ask to take it out of the house on a car ride.  We have to be careful and make sure he keeps it in the house for night time because we don't want him to go sucking his thumb in public.  I'm glad we don't have a lot of problems with socks or tags sticking out of the back, but we usually get shirts that don't have the tag. 

When Dale (Michael's half brother who is now 22 years old) lived with us back in Maryland, we had a lot of taste/texture sensory issues with him.  He never wanted to put any kind of sauce on anything.  One day I was making Dale a hamburger and asked him if he wanted cheese on it.  I thought he had said, "Yes", but was sorely mistaken when I delivered the cheeseburger to the table.  "What is THIS?"  Dale started having a melt down.  I quickly took it away and peeled the slice of cheese off the burger.  I gave the hamburger to Dale but didn't see a miniscule piece of cheese on the very corner.  He refused to eat the hamburger and that whole incident opened my mind to what the world of autism was really like.

The Diet of a "Spectrummy" Kid

When Michael was a toddler he lived on oatmeal and bananas.  I recall it was hard getting him to eat much of anything else.  As he got a little older we affectionately called him "Carb Boy".  He would stick to bread, bagels, donuts and other various forms of carbohydrates and sugar.

We are big gardeners and really do try to eat healthy.  He have grown a garden for the last 8-9 years.  Some years mostly weeds grew.  All in all, we tried very hard to give the twins fresh veggies and fresh fruits.  We lived on a farm for a while with another family and we had our own egg laying and meat chickens.  Still, Michael's choice of food tended to be bread-like in nature.  Cereal became a main staple, just like his older brother Dale (Aspergers).  Then one day when Michael was staring at the TV without it actually being "on", we discovered something terrible.  The horrible, awful, no-good, very bad thing was HIGH FRUCTOSE CORN SYRUP.

This stuff was in everything!  It was in ketchup, in cereals in most of the breads that you buy.  It was in all of the stuff that Michael craved...that Michael had been eating.  We did an experiment and eliminated HFCS out of his diet.  Many of his "spectrummy" behaviors subsided.  We were looking at labels on everything.  Every once in a while when we weren't being careful, or when we would forget, he'd eat something with HFCS and be staring off into Neverland.  Uh oh, what did he eat?  Quick check the label!  Sure enough it was loaded with high fructose corn syrup.

Now like most parents of autistic children, I had read loads of information about strict diets for autistic children.  I always took this with a grain of salt.  Surely my child is not affected by this or that!  So when we started eliminating the HFCS I was indeed skeptical.

Making cookies with twin sister Mikayla and big brother Dale.

I have seen a big change in Michael's behaviors, big changes for the good.  He is now checking for high fructose in all things.  He even says, "It makes my head feel funny mommy."  He will ask me, "Does it have high fructose corn syrup mommy?"  I will tell him, "No Michael, it doesn't."  He will often pick up the item and check for himself.  What a smart little cookie he is!  (store bought cookies are often loaded with HFCS)

So our household does not have any food items with high fructose corn syrup.  Things cost more money, but we know that Michael is safer and more "with it" if he doesn't have those things.  If you have an autistic son or daughter, you can try it.  It might help.  The only risk you take is that if it doesn't work, you are just back to where you started.  I do believe now that a controlled diet does help, but it does not solve all of the behavior problems with an autistic child. 

There have been studies done on this stuff.  Here are a few links that might help. http://www.foodwhistleblower.org/blog/23-2012/362-study-high-fructose-corn-syrups-role-in-autism
http://grist.org/scary-food/new-study-links-autism-to-high-fructose-corn-syrup/

A Team Sport, but not a Team Sport

Swimming.  We live and breathe chlorine from the local YMCA pool.  It is a sport that Michael excels at.  He is a born fish.   I'm so grateful that we have the swim team.  It is a great source of exercise and Michael can be a part of the team.  He can be a part of a group, yet swim alone in his own little world.  It is the perfect sport for an autistic child.

Both of the twins have been in swim team for almost a year now.  When they were four years old I made sure they had swim lessons.  Chris brought them to the pool that summer and they could barely doggie paddle across half of the length of the pool.  They have both come SO far.

Michael with a cap on.  AMAZINGLY.

  I don't think 

he has worn one since.

I was raised in a swimming family.  We had a community pool in back of our house and I would live at the pool in the summer time.  Swim team every morning, doing 100 laps a day.  Swim meets on the weekends.  Just goofing off with friends in the pool when I wasn't in practice.  Christopher too had a strong background in swimming.  He could tread water for hours, and did a pretty decent freestyle.  Yes, our children were going to learn to swim!  Mostly for safety reasons, but with my competitive nature, I really wanted to see if they could compete.

Michael is a natural backstroker.  He has the body that just looks like a back stroking kind of kid.  His freestyle is coming along very nicely as well.  He has the strongest kick I've ever seen.  Now breast stroke and butterfly are a bit too much for him to coordinate, so he leaves those strokes to his sister.  Michael did so well in our swim meet, he made it to districts.  Then he did very well in districts, and almost made it to regionals.

This is really a good sport for Michael.  We had tried karate in the gym at our school.  The acoustics there are a bit much for him and the karate teacher yells at him constantly for not paying attention.  The doctor at the Dartmouth Hitchcock CHAD center in Lebanon, NH said that he is externally and internally distracted.  He still attends karate, but it is nothing like the success he is having with swimming.

With swimming he feels successful.  His language difficulties and auditory processing doesn't get in the way.  He can let his perfectionism shine through.  He can be underwater and not listen to the noise of the outside world.  But beware if you forget his favorite yellow goggles!  Melt down!  Also beware if he doesn't pay attention to Coach Julie or Coach Ruben and doesn't get a sticker for the day.  His wailing really echos through the halls of the YMCA. 

Having Friends

We are on our February break right now.  This means we get a week off of school.  Not for any holiday, but I guess to go skiing?  This mid-westerner does not ski!  How can I when I grew up in the flattest part of the country?  Now the kids are home and we don't have any real plans for excitement.  I know!  Let's invite friends over for a playdate!

This is no trouble for Miss Mikayla, my social butterfly, take charge kind of girl.  She has friends lined up for miles.  She has been on more playdates and sleepovers in her young 7 years than I ever had my entire childhood.  Then there is Michael.

Don't get me wrong, I am extremely impressed with Michael.  He has moved beyond his big brother Dale and has actually called friends himself!  Dale never once called any friend.  The only friend he had was CJ, and that is because CJs mom and I worked together and I "arranged" the friendship for him.  Michael has 3 "best" friends right now.  One is a little girl who is too scared to come over our house.  Michael has been on  two playdates with her.  The first one was at the park over eight months ago, and the second one was at her house.  We have to wait and see when her mom isn't working in order to have a playdate.  Michael is too funny because he will call their house (he has their phone number memorized) and ask for a playdate.  When the mom says "yes" he immediately hangs up.  "Mom, Emily's mom said YES!"  Ok, Michael what day?  What time?  Did you ask any questions? Part communication error due to autism, part that what some 7 year olds probably do.

I end up calling the mom back.  She was at work and Michael called her cell phone.  No, he isn't actually going to have a playdate.  On to friend number two.

Our next friend we have better luck with.  He is at the babysitters this week, and we'd have to get him from there and bring him back later.  Ok!  Friend number two comes over.  Mikayla had invited her friend over as well.  Now the girls can play with the girls, and the boys can play with the boys.  Sounds perfect right?  Not exactly, because even tho friend number two really likes Michael when they are in class, friend number two also LOVES playing with Mikayla.  Jealousy ensues, Michael has a few melt downs, locks himself in my bedroom wanting to be alone, has a few misunderstandings, throws the tooth fairy pillow at friend number two, and mommy decides it is time to send friend number two home a little early.

Michael is working on making friends and maintaining friends.  He is trying really hard.  It still is a tough thing to do. We are lucky to have a wonderful school counselor that helps Michael 2-3 times a week with this issue.  I am grateful for the community in which we live.  I am also thankful for our whole immediate family who constantly works with Michael.  My mom told me once, "Michael is very lucky to have you for a mom.  He couldn't have picked a better family to be born into.  With a veteran teacher, a smart dad, lots of other family support and prior experience with autism, Michael will do well and will make it in life."

Fair Assessment?

Teachers give grades based on student output.  It is difficult to assess the process by which students get an answer.  Math teachers want their students to "show their work".  This way a math teacher can tell if a student truly understands various math concepts.  It shows their math thinking.  In English class it is more difficult to show one's thinking unless they write it down or give a speech explaining concepts and ideas.

What happens if a student's output is flawed?

Information that is inputted into Michael generally goes in his brain just fine.  His comprehension of most concepts is intact.  Michael has a lot of difficulty with his output.  When Michael gives an answer orally, his output is affected by his articulation/speech difficulties along with dysarthria.  He also has difficulties with expressive language.  His written output is also adversely affected by his perfectionism.  There is also the whole processing issue he has because of his autism.

So how indeed can we truly assess what Michael knows?  How can we judge his output when it is dysfunctional?

Michael and Daddy (Chris) at Christmas

I remember going through grade school and middle school English classes.  Back then there was a whole menu of options to show that you had learned the material.  The kid who was good with art could choose making a diarama.  The verbal kids could give a speech.  I'll never forget the story Michael's daddy tells of passing high school English class.  They had to write a report and Chris (who is extremely dyslexic) did not want to write anything.  His spelling even today is atrocious.  (Thank God for Spell Check!)  So Chris did all of the research and gave a glorious speech that was a certain percentage of his grade.  The teacher then asked for his written report.  Chris had none.  He passed English class on his speech alone.  Probably the only kid to have ever done that.  He knowingly manipulated the system and outsmarted his teacher and everyone at Frank Cox High School.

So judging Michael on his output and giving him grades and report cards based on what the teacher sees, is kind of unfair.  Yet, I don't know what other way there is at this particular moment.  Michael can hunt and peck his letters on the keyboard, but not write all of his ideas in his head when the teacher asks to write a paragraph about his weekend.  I believe it will be crucial for Michael's future to learn Touch Typing as rapidly as possible. Hopefully we can get reading specialist to help analyze his miscues.  Hopefully his second grade teacher won't base his understanding of reading on how fluent he is.  I hope that teachers will give him different options to show what he knows instead of relying on his imperfect output.

Perfectionism

Sample of Mike's work

Michael has a tendency to unknowingly be perfect.  He has signs of perfectionism.  An example of this is his writing.  Here is an example of a story problem he wrote for his first grade class.  His handwriting is extremely neat, It almost looks like a teacher wrote the story.  Now I'm "all about" neat handwriting.  I guess being a teacher makes me smile at the perfect letter being formed whether it be printing or cursive.  Yet in Michael's case, it might take him an hour to write one sentence for his teacher.

Michael takes so long in his class, he is the last one done.  He got an "Approaching Expectations" mark on his writing for his report card.  It isn't that he has horrible handwriting or letter formation, it isn't that he has a lot of great ideas up there in his head.  The fact that he got such a low mark was because his teacher never gets to see all of his ideas up there in his noggin for the simple fact that he doesn't get enough written down on paper.  He is so busy making each letter absolutely perfect by the rules, that he never gets to tell his story.

Michael came home the other day from school and I asked him, "How was your day buddy?"  He said, "It was good until the end.  I took a math test but I was too slow and didn't get to finish.  I think my teacher was mad at me."  Now math is something this kid knows how to do.  He is absolutely brilliant in math.  He probably got 99% correct on the problems or maybe even 100%.  The math is pretty easy for his mathematical mind.  The problem was is that he was so busy making his numbers perfect on the paper, it took him the whole class time plus more to finish his work.

Michael has an IEP (Individual Education Plan), and in the IEP there are accommodations for him.  One accommodation is to give him more time.  This is great, but how much more time do you give him?  There isn't enough time in the day to give him all of the time he needs and to get other work done too.

We had this problem with Chris's older son Dale (also on the spectrum...Aspergers).  Dale would take three times the amount of time to do his homework.  He needed someone to write notes for him in high school, because it would just take too long for him to write with his very neat handwriting and actually pay attention to what was going on in the lesson.

I believe this problem of Michael's and Dale's is not just their "perfectionistic" nature, but it is a part of their whole processing system.  We find at home that we have to give Michael enough "wait time" to actually answer a question verbally.  Chris always says I never gave Dale, and now Michael enough wait time.  I need to be even more patient.  As a teacher, I always thought I was really good on the whole "wait time" thing.  Instead of counting to 10 in my head, sometimes I need to count to 20 in order to hear a response from Michael. 

So I'm wondering if anyone else out there who has a child with HFA (High Functioning Autism) has seen this perfectionism in their writing?  Does it take your child 3 times as long to finish anything?  What has helped?  Do you set a timer and say, "It needs to be done by the time the buzzer goes off?"  Being as black and white and rule driven as they are, maybe this will actually help.