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".

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.

Learning to Read with a High Functioning Autistic Child

I have been a teacher for approximately 25 years.  I have taught Deaf and Hard of hearing children to read, Dyslexic children, children of various learning disabilities and regular children.  As I watch Michael learn to read, I find I am trying very hard to sort out, "What is a reading miscue?"  and, "Is this a miscue because of his autism?"

When Michael was 2, he was reading already.  He was reading all environmental signs, and he was reading pre-school and beginning readers.  He seemed to memorize the word, the more complex the easier it was for him.  He was reading words like, "chimpanzee, walking, elephant".  It seemed as if he were hyperlexic, a trait not uncommon amongst high functioning autistic children.  He was putting ABC puzzles in order at age 2, and throwing a fit if his twin sister removed any letter.  He would lean out of his crib and play with Leap Frog Learning devices for hours.

When he was in kindergarten he seemed to be in the highest level of reading group.  Now that he is in first grade, he has slipped down to the second reading group. It is not uncommon for children who learn to read at an early age to become more aligned with their classmates.  He is still a pretty good reader for age 7, but his classroom teacher was keeping him at lower reading levels to increase his fluency.

At conference time, Michael's classroom teacher showed us a recent running record.  This is a record of the text he reads and his miscues.  As Chris and I were looking at it, we noticed that many errors were due to 1.  His articulation (Michael has some speech errors...especially the /th/ sound both voiced and voiceless) and 2.  His language/grammar errors.  Michael also speaks more slowly than other children.  He has dysarthria (a speech disorder caused by disturbances of muscular control because of damage to the central or peripheral nervous system), which causes his speech pattern to sound a bit different than most children.  Many of the errors he made were because that was the way he talks.  He did make a lot of verb tense and grammar errors such as saying "childs" for "children", and "come" for "came".  One could argue that he isn't paying attention to the end of the word, or that he isn't paying attention to the vowel sound.  So therefore this must be a "reading error".  Chris was adamant that it was an "autistic" error.  This is the way Michael talks in his everyday conversations.  Chris didn't want the teacher to be "docking" Michael on errors that were mostly beyond his control.  

I brought this to the attention of the other reading specialists I work with at Jaffrey.  The other 5 Title one teachers, including myself have over 150 years of experience all together.  I have high respect for these ladies, and they gave me very good advice.  "Even though these errors might be from Michael's autism, he is still not reading what the author intended.  He would need to fix these errors whether it was a "reading issue" or an "autistic issue".  We keep monitoring his reading and trying to decipher the reasons behind his errors.  Between the Title 1 teacher he works with who is also the program manager for our Title program, the speech teacher and myself we are analyzing these errors. 

Luckily Michael's comprehension of the text he reads is not suffering.  He generally understands what he is reading. I have read to the twins practically everyday from when they were in the womb! Other children  that I have worked with, who are autistic, have a weakness in this area.  I am wondering though, that with time and when the content gets harder, he will start to have some comprehension issues.  The other day he did not understand a question that the teacher asked him about his book about hummingbirds.  She said, "Michael, point to the word that tells what is important about the hummingbird's beak."  Michael pointed to the word "beak".  When he was told he was wrong, he got mad, shoved his chair backward and went storming off.  He then used his strategies, cooled down and came back to the reading group.  A few minutes later, the situation occurred.  "Michael, point to a word that tells what is important about the hummingbird's tongue."  Michael again pointed to the word "tongue".  I believe that Michael wasn't understanding the question.  He was being too literal.  I spoke about this at length with Chris.  Then the next day I talked to his speech teacher about it as well.  We talked about having a visual drawn for him, such as the word "beak" in a circle with lines around it.  (envision a sun)  This graphic organizer would help him see that we don't want the word "beak" it is already there.  We want to add descriptions about the beak on the lines. 

I find this very interesting and would love to hear if anyone else out there has had similar experiences with their high functioning autistic child.  I think I could even see myself doing extensive research on this topic.  Surely someone is studying "Reading and Autism".  This would be a great research project, really worth looking into.