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.

Black and White

Children on the spectrum are very black and white in their thinking.  Most often these children have inflexible thinking patterns.  Sometimes they can't move beyond what they have firmly decided in their minds.   We have to teach them that not everything is so black and white.  Their rigid thinking often times gets them frustrated.  Sometimes they might act out in inappropriate ways.  

An example of this thinking, or taking something very "literal" was my comment to Michael the day Chris took Ally and I out for dinner.  I said, "Michael, mommy, daddy and Mei Mei (the name the twins call Ally) are going out to dinner tonight.  Miss Tracy is going to babysit you.  Michael automatically put on a big frown face and starting to have a fit.  What was the problem you might ask yourself?  Well, we quickly found out that he was, "NOT A BABY!"  Then we knew that he took the word "babysitter" to actually mean that.  A person who watches a baby. 

This also produced another train of thought in Michael's autistic brain.  He said he didn't like babysitters because they are mean and they lock you in the closet.  Where in the world did that thinking come from?  Well, we quickly learned that Timmy Turner's babysitter (Fairly Odd Godparents cartoon from Cartoon network) is this evil, vicious girl who tortures Timmy whenever his parents go away.  Michael literally thought that having a babysitter would be the worst thing in the world.  Nevermind that Tracy has lived in our house for the last 9 months, and that he knows her almost like a family member.  What happens on TV must be true!

Now I know that many children the age of 7 are still sorting out reality and fantasy.  This is just a developmental stage of most children.  Yet his comments weren't just the typical developmental phase of an average child, it is this developmental phase compounded with an autistic brain.  I must clarify that his brain is a smart and wonderful thing.  It normally thinks "outside of the box", his thinking is different, but it is a good kind of different.   It is also restricted into thinking in a very  literal way.  We get conflicting reports from the school, that Michael needs to "think outside the box".  He does think "outside of the box".  His solutions to problems are out of the ordinary.  He doesn't conform to thinking like the "norm".  What they need to say is that he needs to work on his inflexible thinking.  He needs to work on his language, both expressively and receptively.  He needs to move past his black and white thinking and develop some of those "gray" areas. 

When dealing with Michael, I have to really pull out all of my training as a teacher for the Deaf and hard of hearing.  Figurative language is tough for them.  You have to explain a lot of things that you and I take for granted.  I always wondered back in the late 80s why they kept putting autistic children into our preschool Deaf and hard of hearing class, now I know why.  It is the strange idiosyncracies of of our language that can get some autistic children confused. They need to be taught this things explicitly.

Little, Big Man

Michael has always been a very snuggle-up, loving kid.  He is always the first one to give you his beloved "woobie" if you are sick or you've had a bad day.  I had always thought that autistic children didn't show their emotions or could not empathize with others.  This is more true for the children who have Aspergers, not necessarily children who are high functioning autistic.  Children on the spectrum are so different from each other.  Sometimes you cannot predict how one will act based on another autistic kid.  When we went to Dartmouth Hitchcock CHAD center in Lebanon, NH (where they diagnosed Michael), the doctors there said that it was definitely high functioning autism instead of Aspergers because of this major difference.....Michael shows emotions and empathy.

Michael is very affectionate.  He loves the "deep pressure" and getting hugs.   Holding him close calms him down, and is comforted by that.  We are so lucky to have such a sweet and loving boy.  He is much easier to cuddle than his twin sister.  Mikayla is very independent and wants to do everything herself.  She does cuddle sometimes, but has more of an attitude.  Mikayla is 7 going on 27.  Michael is 7 going on 7 months.  Ok, maybe that is quite an exaggeration, but I do feel that Michael is socially a bit behind.  Not at all surprising for a kid on the spectrum.  

He seems so naive sometimes, and with his black and white literal thinking he seems so young.  There were many times that I wouldn't mind sending Mikayla on the bus by herself, but I don't think I would have sent Michael without his sister with him.  If he was an only child, I'd probably would still be driving him to school myself. The rare times when Mikayla is sick and Michael has to go to school on the bus by himself, I get a little twinge of worry in the pit of my stomach.  Mikayla takes care of him.  She has often "interpreted" things for us that happened at school because Michael could not effectively use his expressive language to let us know.  Sometimes Mikayla acts too much like the parent.

Until Michael was about 5 years old, he still had that "baby" smell to him.  Everything about him seemed young.  Everything about Mikayla said that she meant business and was going to go out and rule the world.  If they would let a 7 year old be president, she would be the first contender.  Michael on the other hand would rather stay in the house building legos by himself or figuring out a puzzle quietly at the table.  The twins are like night and day.

Perhaps because Mikayla acts so much older than what she is, maybe Michael isn't all that "young".  Maybe he is sort of average socially and I only have this mature girl twin to compare him to.  I watch as Michael will grab his "woobie" and automatically suck his thumb.  He does this mostly when he is tired, and only at home.  I wonder, "Do I enable him?  Baby him?  Am too over protective because of his autism? "  I know he is an extremely intelligent kid, and he will probably be able to handle many more things in life than I give him credit for.  Still that fear always lingers inside my head, "Will he grow up and function in the world?  Will the world eat him alive? "  Please God, help me overcome my fears for my child.  Please let him succeed in life and be happy.  Please don't let the world be too cruel to him.  Let others accept his little differences and see what I see....a truly amazing, brilliant child with a heart of gold.

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.

It's Lonely at the Top of Mount Mineenee

One of my fears with having a child with autism, is that they will grow up and never find that special someone.  I have seen an overwhelming amount of children with autism grow up and never date, never get married and never have a family of their own.  I have firsthand experience with Dale (Chris's odest son from his first marriage).  I was constantly trying to arrange playdates  with my friends, asking if their kids would come and play with Dale.  He is a grown man now, still living with his biological mother and has NEVER been on a date with a girl.  He's never kissed a girl.  He will be alone because the social barriers are too much for him to overcome.

Michael is much more personable.  He has had a lot of training through the excellent counselor at our school, to overcome problems and social issues.  He even memorized a little girl's phone number and called (repeatedly) for a playdate.  They did get together and had a wonderful playdate.  I am happy that they will have many more.  Michael does have friends!  Maybe he will break the typical mold of an autistic child.  He has a lot of love to give, and is such a sweet boy.

Yesterday there was prediction of a lot of snow so daddy (Chris) went outside to start the backhoe and tried to remove the snow.  Chris asked Michael to come out and help him, and so they were outside for about an hour.  Chris came back into the house, but no Michael.  We figured we'd let him play outside in the snow.  After an hour or 2, he was still out there.  I was busy doing chores and forgot he was out there.  As I was making our bed, I looked out my window.  There was Michael, all alone on a big snow pile.  Chris had shoved all of this snow (a few storms ago) into a big mountain of a pile.  Michael affectionately named it "Mount Minee nee".  Michael sat on top of this pile licking at snowflakes that fell from the sky.  He loves his pile of snow, but he was out there.....all alone.


I watched him for a while from my window, and felt a mixture of emotions.  The overwheming emotion I felt was lonliness.  I asked Chris to go get him and bring him inside.  When he got in, his little hands were freezing cold.  Sometimes Michael is unaware of dangers.  I suppose a lot of autistic children are....unaware.  He didn't come in when he was cold.  I asked him if he was lonely outside by himself.  He said, "Yes, I was lonely.....all alone."  I asked him, "Why didn't you come in and be with the family?"  He never responded.

This is a fear I have.  Will he get into his own world like he sometimes does and not realize he is lonely?  Will he realize he can do something about it? 

Must Be Matching

Michael is in this phase, or maybe he has always been in it.  It is called, "Everything must match!"  Michael refuses to wear any pajamas that are not matching.  He'd rather wear his summer pjs in the dead of winter if they were the only ones in his drawer that match.  I recently bought him some new socks.  Luckily he doesn't have the typical "I don't like the feel of socks" tactile/sensory problem that most autistic kids do.  So I buy these socks and he HAS to match them perfectly.  Not only with his outfit, but with his underwear as well.  We went through 10 pairs of new socks in 5 days.  Why?  Because he was not only matching the socks to his daily outfit, but to his night time pajamas too.  He matched the red "Angry Bird" socks to his red angry bird pajamas.  He matched the camouflage socks to his camo pajamas. 

It is really cute, but a little OCD.