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.