How Long Does It Take to Eat a Waffle? ....The World May Never Know!

It's Saturday morning, the day I always make pancakes and bacon for the family.  Sometimes I make my home-made waffles, but that always takes some extra steps.  Chris wanted waffles this morning, so I was happy to do so.  My home-made waffles are really the best, they are such a treat.  The first waffles come out and Chris and Mikayla nab the first block of 4.  Michael comes running to the table eager to get his waffles, but that batch isn't ready yet.  The next batch of waffles come out, UH OH!  Two of the four waffle have the edges not fully formed.  The batter did not spread all the way to the edge.  I can't serve these two defected waffles to Michael, but luckily the other two will pass muster.

This is definitely NOT Michael's waffle, it only has 2 squares left!

I put the waffles on the plate in front of Michael with his favorite Log Cabin syrup without high fructose corn syrup.  (High Fructose Corn Syrup totally puts Michael into major autism-land).  I go back to fixing more waffles and turning over the bacon.  I get another batch of waffles and bacon ready to bring to the dining room table and as I come in, here is Michael with the syrup. He is putting exactly ONE drop of syrup in each of the little square holes.  He is meticulously dropping one little golden drop of sweetness into each tiny square.  He is completely focused and I just smile and think to myself, "There he goes, my sweet autistic boy!"

I go back to the kitchen to get yet another batch of waffles and come back to find he has finished putting the droplets of syrup into each individual hole.  Did you know that there are 36 squares in a typical home-made waffle?  Did you know that it is a square number?  How perfect is that right?  Now did you know that my son started doing some division here??!!  Yes a waffle during breakfast is a total MATH lesson.  Now Michael is slowly and carefully cutting up his waffles.  He is taking so long that Mikayla and Chris have long left the table while he is cutting the waffle into a perfect 4 square section block in order to eat his waffles.  I said, "Michael, let me help you cut this buddy!"  He almost panicked as I pulled over the knife.  "MOMMY!  You must cut them into fours!"

I had to slow down and think, "Huh?  What are you saying buddy?"  He then pointed to all of the other pieces that he had cut.  Sure enough he was cutting the 36 little squares into sections that had 4 perfect squares inside of them.

"Mommy!  I need them in fours and I will have 9 pieces to eat."  Michael exclaims. Yes, 36 divided by 4 equals 9.   So I oblige and start cutting up his waffles to his specifications.  He looks up and me and says, "Isn't that cool mommy?"

I agree that is is "cool" and then I also say.  "Yes Michael that is cool, and that is very autistic of you!"  When he does something that is more spectrummy than the norm, we have started to point this out to him.  We don't admonish him in any way, we just point it out so he can realize that he is doing something that a "norm" might not do.  I do think it is cool, his math mind is working all of the time.  He has an amazing mind and is super smart.  I think it is good to make him aware of the times he is being more autistic.  I think this will help when others might get frustrated with him, I am hoping that he will say to himself, "Oh, I'm doing this, this is an autistic thing....people that do not have autism wouldn't do it this way.  Maybe that is why they are frustrated with me."  I am hoping that he can get to this self-actualization.

In the meantime, "How Long Does It Take to Eat a Waffle?"  Perhaps it takes twice as long when you live Somewhere Over the Spectrum!

Code Spectrum: Not Responding

During the last two months I have seen a huge decline in Michael's ability to respond to people. His communication has gone down dramatically, so much so that I am extremely concerned.  Other people have pointed this out to me as well.  A few weeks ago we went with our neighbor (the twins affectionately call her "Miss Lori") to the movies.  Before the previews even turned on, Lori started talking to Michael, granted Michael was sitting directly in front of her, I was sitting on Michael's left side, but he did not respond to her.  She tried again, got his attention, tapped him on the shoulder and he finally turned around but stared right through her.  After she asked him a question he still didn't really respond and I had to prompt him again.  After the movie was over Lori stated that she was really worried about him, and now I am seeing more of this deterioration of communication.

Two months ago he had an ear infection.  He got on an antibiotic and I figured the problem was solved.  A few weeks after that he complained about wax in his ear.  I do not use Q-tips generally because he had a blockage of ear wax when he was three, and the pediatrician said, "DO NOT USE Q-TIPS!"  So I have avoided them for years, but this time I gently used one and out came a huge strand of wax.  Ok, I thought, maybe he is having hearing problems.  Maybe he has major wax build up again.

One morning Michael came into the bedroom and cuddled with Chris and I.  Michael's head was on the pillow and I was talking to him.  My mouth was not more than 15 inches from his face.  He could see me talking and asking him questions.  He did not respond.  Since my background and undergrad. degree is in Deaf and hard of hearing, I immediately did the Ling Sound Check with him.  He seemed to not respond to high frequencies (th, sh) sounds.  I definitely think we need to get him in for a hearing check, but on top of that he just seems to be in his own world in general.  Usually Michael requires wait time when we talk to him.  He has to think and does not respond as quickly as a normal kid would respond.  Yet this wait time" seems to have been tripled during the last few weeks.

Michael building earthquake proof buildings at the Space Center 

His teacher has even noticed that Michael doesn't seem to be "hearing" right.  I guess the other day she gave directions and he went back to his seat and put a big question mark on his paper.  I'm glad she brought it up to me because now I KNOW I am not imaging this.  Is there a hearing issue?  Is he just becoming more "autistic"?  I remember when I did my student teaching for Deaf and Hard of Hearing, I was working in a preschool and they had brought in this child who wasn't communicating.  It turns out he did not have a hearing loss in any way shape or form, he was autistic.  We started teaching him sign language anyway, but he was soon moved to a different school ....to a different program.  When I first met my husband twelve years ago, they had diagnosed Dale as autistic, but the  question of "Does he have a hearing loss?"   constantly surfaced.  Dale never seemed to "hear" what we were saying, sometimes he didn't respond.   I know from past experience that sometimes an autistic kid does NOT want to answer you.  Sometimes they are totally entrenched in their own thoughts it doesn't occur to them that someone else is even in the room.  Michael is so high functioning that this hasn't been a problem before, it has been barely noticeable.  Is he taking a turn for the worse? 

We tried for the last 4 weeks to get an appointment up at CHAD Dartmouth Hitchcock in Lebanon.  This is where he was first diagnosed by Dr. Mott and Ellen Cavanaugh.  Dr. Cavanaugh moved away and Dr. Mott is left up there.  The CHAD center never called us back.  Ally left 4 messages, I left 2.  Finally I told Ally the other day, to just hit "I am a Doctor" button.  She finally got through, and they claimed that we had never called there and that there was no one who called from our household.  :(
Then they tell my husband who called later that day that Michael was NOT A PATIENT there and we would have to go get another referral!  WHAT??  So we missed last year's yearly check up for his autism, so now we are totally erased from the books??  So now he has an appointment somewhere else and hopefully we can find out what is going on with this little guy.  We need to find if he is getting lost, Somewhere Over the Spectrum.

Michael and Mikayla at the Space Center

Let's Wear Our Clothes Until They Fall Off Our Body!

Last week our school had "Winter Carnival".  It is a fun day where the kids get to spend the day outdoors tubing, snow shoeing and other exciting winter activities.  Michael did not want to go.  I had no idea why he didn't want to go, except he said he would be too cold.  The day was actually up to the mid 40's and I thought it was a perfect day to go do this.  We sent him on the bus and off he went to "Winter Carnival".

I discover later in the week why he didn't want to go.  He was "too cold".  He really WAS cold, wet and miserable.  This was because he had gaping holes in the toes of his winter boots.  I was shocked at the state of these boots and wondered why he hadn't mentioned this fact to me.

"How long have you had these holes in your boots buddy?"  I ask him.

"A very long time." he responds.

He loves his Wal-mart winter boots from last year.  They have Spiderman on them.  They are comfortable and slip on.  He doesn't have to worry about tying shoes.  They are familiar.  I don't think he ever would have mentioned that they had holes in them as large as the Grand Canyon.  He would never mention this because of his autism.

We had this problem with Dale too (Chris's oldest son from his first marriage).  Dale would wear t-shirts until they were 3 sizes too small.  He would wear shoes that were too small on him.  He needed coaxing to actually change his underwear everyday.  So what is it with autistic kids and clothes?  I know it is partially a texture thing.  The clothes have to "feel right".  I also believe it is either something they don't notice because it isn't important (unless it feels funny) or it is familiar or routine to them.

I bought Michael a new shirt 3 weeks ago now.  It is still sitting in his drawer.  I have put it on "top" of the drawer every time I go in there to put away clothes.  I asked him, "Hey buddy?  Why haven't you worn your new shirt yet?"  He says, "Well I saw it, but I didn't know it was mine."

"What???????"

"Yes Buddy, that shirt is yours.  Mommy bought it for you.  It is nice and new and soft and has a hoodie like your other one...."

Has he worn it yet?  NOPE, NADA, NOT AT ALL.  He is so opposite of me.  As soon as I get a new item of clothing, I have to wear it the next day.  Not Michael!  We have to struggle to throw away old sweat pants that have holes in the knees.  The kid goes to school looking like a waif! Half the time he goes to school with floods on.   We have to slowly phase these things out so he doesn't notice.

So will my autistic son every be "sporting the latest fashion?"  I think not.  He might never do modeling for GQ, or probably ever getting a job that requires much more than sweat pants and hoodies, but I love him more than words can say.  He is definitely comfortable to say the least.

So is it texture?  Is it that new clothes just aren't that important?  Do autistic people just not notice these things, or are clothes so petty they are at the very bottom of their awareness level?  Whatever it is, it is definitely one of the many indicators that he is "Somewhere Over the Spectrum."

Many little blow ups? Or just one big one?

It has been quite a while since I've written about Michael and posted to my blog.  We have been quite busy, but since today is a snow day, I have time to get my thoughts down in writing.

We have had a pretty smooth couple of months, no major outbursts or strange idiosyncrasies to mention.  I have noticed that Michael has had the "mad face" quite often lately, and I feel like I'm always trying to avert a major blow up.  He has had an increasing amount of "little mad times", but I have been quick to distract him and take a detour before something major happens.

Ally said to me, "Is it good to constantly head him off at the pass?  Or should we actually let him have a major melt down?  Is he having many little outbursts because he really needs to let off steam and have a major blow up?"

She has a point.  We really should schedule an appointment up at the CHAD center.  He is suppose to go in at least once a year to check on how he is doing with his autism.  We haven't been up to CHAD since the end of his kindergarten year.  YIKES it has almost been two years since we've seen anybody.  This would be a good question to ask the doctors, and as soon as I'm done writing this blog I'm going to schedule an appointment.

One example of a "little mad time" was that we were sitting at the dinner table, and I noticed Michael is not eating and just has a big frown upon his face.  Many of the other adults were in conversation and I leaned over to Michael and said, "What's wrong Michael?  You look very mad."

"I am VERY MAD!"  he states.

"Why are you so mad Michael?"

"I am very, very MAD because you promised me that I could get the Wayside School books to read and we don't have ANY!" he yells.

I quickly come to the rescue by saying, "Michael, you haven't used your birthday gift card from your brother Dale, we can order those books right now."

Chris says, "Not right now, after dinner."
"Yes, yes", I reassure him, "Right after dinner!"

I have been like that for months now, trying to pacify him before anything "happens".  I feel like I have become the parent of Veruca Salt from Willy Wonka.  I don't want to give in and I know I can't make everything easier for him.  I know that I should not be rescuing him all of the time.  I need to let Michael experience failure, and have him make his own successes. I can't be afraid of Michael blow ups, and maybe it is healthier that he has them.  

For those of you with kids somewhere on the spectrum, what is your opinion?  Is it better to have a big melt down?  Are many little "mads" leading up to a huge explosion?  Do any of you try to avert the blow ups by any means possible?  Have any of you been in this place of trying to pacify your child so nothing major happens?

Rigid, Inflexible Thinking

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

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

Make sense so far?

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

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

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

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

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

Great School Year So Far

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

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

Mikayla and Michael on their first day of school.  

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

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

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

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

GO POTTY....GO POTTY NOW!

Many autistic children have difficulty initially getting potty trained, and even if they do get potty trained, many times there are accidents that follow for a long time afterward.  This has been true for Michael.

Michael is a twin, and I think that is a good thing.  He has a sibling, a very bossy sibling, who is the same age.  Mikayla was trained by the age of two without any problems at all.  She got to go to the private pre-school early because she was potty trained.  Not so for Michael.  If I remember right, he got potty trained by the time he was four.  I think this is a pretty good age for #1 being  a boy and #2  being a boy with autism.

Chris with the twins when they were 3.
 Mikayla trained, Michael not so much.

Even though he was mostly potty trained we continue to pack a "just in case" bag in his backpack for school. This "just in case bag" usually has a pair of underwear and pants, just in case of an accident.  He used it a few times during this last school year (first grade), and the one time I had cleaned out his bag and didn't put a "just in case" bag in his backpack, was the one time that he had a really big accident and there weren't any extra clothes for him.  That was the day that I had to run home very quickly, and missed co-teaching my 3rd grade math class.  *sigh  Luckily I work at the same school as the twins, so everyone was extremely forgiving.

So what is happening in Michael's head when he has an accident.  I believe it is called, "I am too busy doing what I am doing, and I don't have time for any interruptions, even if it is myself that is interrupting."  Many times he is building with his blocks, watching a TV show, or is on the computer playing a fun computer game.  I watch him clutching his crotch and practically dancing around the room.  I say to him, "Go potty, GO POTTY NOW!"  Sometimes he will run off and go to the bathroom just making it by the skin of his teeth.  Other time he will refuse, "I don't have to go to the bathroom," he replies, his eyes fixed on the computer screen and his dancing getting worse and worse.

Lately we have had many accidents in a row.  One was caused in the kitchen (thank goodness...easy to clean floor), in his swim suit.  He was trying to get a cup of water for himself and was stuck there.  His dilemma was to either finish getting the glass of water, or hurry off to the bathroom.  He chose the first option and peed on the floor.  The next day we had an accident up in his bedroom, he was playing with blocks and had to go, he stood there screaming from his bedroom holding himself.  He was stuck and couldn't "go anywhere",  he was holding handfuls of pee and was afraid to move.  I couldn't help him, as I am stuck on the couch with a broken foot (long story) and he was having a melt down because no one was coming to help him.  He then had two more accidents that day, so there was 4 in a matter of 2 days.  What in the

Having a broken foot that has 5 fusions is not easy
when you have an autistic kid.

world?

It doesn't help to get mad or upset at him.  I think when we do that, it kind of gets worse.  We talk to him and tell him he needs to be more aware of this situation.  Michael says, "I will try mommy."  This cannot be any good for his self esteem.  This isn't any good for his social image.  Right now first and second graders don't catch on as quickly, but in third and fourth grade?  He is going to be the "baby" who wets his pants and has to have him mommy pack him extra underwear.




Well, I blame the onslaught of accidents on summer vacation.  There isn't a real routine this last week before we go back to school.  There is no camp, no swim team.  The twins are sleeping in later.  There isn't a real schedule.  Michael thrives on schedule.  There is also too many "fun" things going on.  It is very hard for my "normal" kid, much less my autistic kid to break away from such fun.

I also believe that all of these accidents might be a sensory issue.  I do not think that Michael realizes he has to go half of the time until it is way too late.  Maybe he thinks he can get to the bathroom on time.  Does he actually feel the sensation to have to urinate?  Maybe the sensation is muted.

I also say in the back of my mind, maybe this is an attention deficit thing.  Many autistic children are also diagnosed ADD or ADHD.  Sometimes I think, "Maybe we should try ADD medicine, then he would pay attention to his body and go to the bathroom on time."  I am not one for medicine, but I slowly find Michael paying less and less attention.  I'll wait tho and see what his second grade teacher says.  If it is starting to affect academics in school, then we might have to seriously look at this.

We are looking forward to starting school again.  We will be on a more predictable routine, and hopefully we will have less accidents.  I will be packing a "just in case" bag again for second grade.  I will probably be packing this bag for a long time, because Michael will always be "Somewhere Over the Spectrum."