Front Door Etiquette

Little Guy loves to answer the front door.  No matter where he might be in the house, he starts sprinting whenever he hears a knock or the doorbell. 

And heaven help the family member who answers it first!

In spite of his eagerness to answer the door, Little Guy's awareness of what comes next is lacking.  Many times he just stands there, refusing to speak or acknowledge the visitor.  Or if he does speak, it's often something which could be interpreted as rude.

We work on door etiquette consistently, but still have awkward moments.  As an example of this, Sis had her wisdom teeth out a few weekends ago and had several visitors during the time she was down.  One individual in particular visited her several times...and Little Guy happened to be in fine form.

That Friday, this person stopped by for a few minutes on the way to a family get together.  Little Guy opened the door, stood there for a minute before blurting out, "Just who the heck are you?"  I hurriedly invited them in, reminding Little Guy to be polite to visitors. 

A few hours later, this friend returned.  Upon opening the door, Little Guy used his most annoyed tone to blurt out, "NOT AGAIN!"  I actually caught the door as he was shutting it on the person, ushered them in, and reminded my son that we invite our visitors inside when they have come to see a member of our family.

The following day, this individual came to our home again.  I hurried to get the door...but Little Guy was already there.  This time, he had his hands on his hips and asked, "What do you want this time?" 

"We don't say that, it's rude.  We say 'Come in' if someone is here to visit," I reminded Little Guy as I opened the door wider and admitted Sis' friend. 

Later, this person mentioned to Sis that he didn't think Little Guy liked him very much.

I think Little Guy likes this individual just fine; in fact, he sat next to him later that evening in our rocking chair.  The problem is, he doesn't recognize the social cues which signal our feelings about others - which include making them feel welcome at the door.  

We'll continue to work on this skill until Little Guy has grasped it; until then, if you come to our door and Little Guy answers it, please be patient.  We really do like visitors :)

This Close

An aspect of individuals with Asperger's Syndrome is they are often quite literal in their thinking.  

This can sometimes create quite a twist in a situation :)

Just before school started, Sis and I decided to go fishing at a city pond and took along Little Guy.  Little Guy has many sensory issues; some include avoidance, others include seeking.  For some reason, he was on a tactile seeking streak; everything he saw, he had to touch.  Grass - touch.  Rocks - touch.  Mud - touch.  Scum on water - touch.  

As I was taking my turn at the pole, Sis noticed Little Guy putting his hands in the garbage can.  She gave him a warning, with a reminder that it's not okay to touch certain things because they can carry germs.  Little Guy skipped away, but was soon drawn to something else he shouldn't be touching.  Again, Sis gave him a warning.

I soon caught a fish, one too small to keep.  Unfortunately, it had deeply swallowed the hook and I was a little too vigorous in trying to free it; fish blood and guts soon splattered the ground.  I finally pried the hook loose, and decided to see if the fish could be saved by putting it into the water.  As I slipped it back into the pond, I heard Sis yell for me.

I turned around just in time to see Little Guy swirling his fingers in the gut/blood mess.  It was the final straw; I marched right over to my son, removed his hand from the viscera, and bent over to look him in the eye.  I spread my index finger and thumb apart and said, "You are about this close to being in big trouble, young man!"

An immediate look of puzzlement swept over Little Guy's face.  Not anger, shame, fear, or any other typical emotion I was expecting.  As I turned away, I heard him ask his sister this:

"How close was it? How close did she say?  Was it this close?  How far is that - three inches?"

This was said without sarcasm, calculation, or deviousness; Little Guy had taken my statement literally and was focused on the physical distance I'd indicated, totally missing the point that he was in trouble altogether.  Sis and I looked at each other, trying desperately not to laugh.  I had to turn and hide my smile as my daughter patiently explained to her little brother what I'd meant by my statement.  When it finally seemed to register with Little Guy, he let out a huge sigh, and looked straight at me

"Whew - I sure was lucky.  That was really close, wasn't it?"

Something Simple

Having a child with Asperger's Syndrome can be very disruptive to overall family life, especially if they are having an "off" day.  Although I've become very practiced at anticipating and avoiding what may trigger a meltdown for Little Guy, there are still some things that catch me unawares.  

And usually, it's something simple.

Something like taking a picture.

Middle Guy and Little Guy have needed new pictures for a while now.  I've been meaning to have a quick photo shoot with them, but we just never got around to it.  We were taking a vacation in Northern Utah three weeks ago and happened to be staying at the Homestead in Midway.  With its beautiful grounds and ambiance, I decided it would be a great place to snap a few pictures of my two youngest boys.

I wasn't too worried about Little Guy; I'd given him plenty of advance notice about what we were going to do, there were no crowds or noise issues to set him off, and we weren't in any rush - any of which can escalate his anxiety level.  In fact, I even let him bring some new legos to play with to keep him occupied while photographed his older brother.

Yep, I was pretty confident I had things well in hand. 

The session started off well, and I was able to get some shots I liked:

However, things began to quickly unravel.

Little Guy was losing interest, so I asked Big Guy's help in trying to engage him.  He started to joke around with his little brother - but apparently, Little Guy's tolerance level was paper thin because he immediately fell apart.

Not once,

Not twice,

But three times...

...within a thirty minute period.

I tried to catch Little Guy during his calm times, switching to Middle Guy during the meltdowns.  All I can say is THANK HEAVEN for Photo Shop to help me edit the most of the red out of Little Guy's eyes and face, or else the session would mostly have been a bust.

While our friends and family enjoy the results of our photo shoot by viewing shots like this one,

many won't appreciate the drama it took to get them!

First Day

Today was Little Guy's first day of kindergarten:

I have to admit, I was having a hard time.

Not only because he's my youngest child, but because of the unpredictable nature of his diagnosis.  My husband and I sometimes jokingly refer to our son as our little "Jekyll and Hyde"; sometimes he can be oh so cute, and other times...watch out.  Oh, how I hoped the Jekyll side showed up at school today!

I could tell Little Guy was struggling with some anxiety issues, so I made it a fun, relaxing morning for him.  We played his favorite game, we watched his favorite show. And when he declared he hated first days and wanted to skip them, I gently reminded him that he had to have a first day of school sometime, and it might as well be today because all of the other kindergarten kids would be a little nervous as it was also their first day.  That logic seemed to help him settle down.

After snapping a "first day" pic outside, I took him to lunch.  We decided to skip the bus for today to help cut down on his stress level, so I drove to the school and walked him inside.  There were several other parents also seeing their little ones off; some even looked as anxious as I felt (probably 1st timers).  After a morning of putting on a happy, relaxed face for Little Guy, I walked back into the parking lot with a knot of worry in my stomach and my cell phone ready to answer the call I hoped wouldn't come.

As time passed and no call came, I was able to relax a bit.  Suddenly, I realized it was nearing time to pick him up and STILL NO CALL!

Little Guy greeted me with a smile, eager to share his experience.  Although there had been an incident in computer class where he needed to be moved next to the teacher, there were no tears or major meltdowns.  He even came home with a green ticket!

Yeah - Dr. Jekyll showed up after all :)

I'm sure my confidence with the staff and teachers at Little Guy's school will grow as I get to know them better and they gain time and experience working with my son, helping me to feel less anxious about what might happen while he's there.  Other days might not go as well as today, but all I can say is hooray for a GREAT first day!

The Process

Summer.

It's over.

While the process of readying my kids for their return to school usually fills me with excitement, this year, that excitement is tempered with stress.

It's Little Guy's first stint at public school.  And because we're not coming in from the district preschool, there is nothing put into place for his needs.

Yes, we're starting from scratch.

Actually, not quite from scratch.  I do have documentation of his diagnosis, which is needed before the process of qualification can even begin.  

A week ago last Monday, I called the elementary school and inquired whether my request for an IEP meeting had been passed along to the appropriate people.  I'd submitted my request BACK IN MAY and had yet to hear from anyone.  The next day, a person returned my call to discuss Little Guy's situation and begin the process of qualifying him for services.

Although she was very helpful and seemed concerned about my son, there's a catch...

The qualification process takes 45-60 SCHOOL DAYS.

It could take months before services are available for Little Guy.  In the meantime, what happens if there's a big meltdown or other disruptive situation where he'll need to leave the classroom?  Because it's not a matter of if it happens, but rather when.  What about assemblies, when the noise level and crowded bodies become too much for him to bear?  And then, there's the issue of riding the bus where the noise and crowded space could also spell disaster.

With all of these possibilities looming, I've felt more than a little nervous - especially since an official game plan won't be available for a while.

Luckily, it looks like an "unofficial" game plan is in the works.  While Little Guy cannot access special ed services immediately, I am teaming up with the school counselor and his kindergarten teacher to put other measures into place to deal with any potential problems which may arise.  Hopefully, our combined efforts will help Little Guy have a great start to his public school career!

Something Good

Although my life is often filled with instances like the one from last post, there are moments of progress with Little Guy.  Good moments that fill me with hope and give cause for celebration.

Something good happened recently while we were at the neighborhood park.  We'd arrived hoping to find some of Little Guy's friends, but there was no one we knew.  Little Guy hung out by the splash pad, looking at the other kids longingly.  He finally told me he wished he had someone to play with, so I encouraged him to find some friends.

He was hesitant at first, but then began approaching some of the other youngsters.  I watched, intrigued, wondering what Little Guy would do.  His initial overtures were rebuffed because of his inability to realize the importance of eye contact in socialization; most of his efforts were made when the other kids' heads were turned or they were busy doing other things.

"Nobody wants to be my friend," he said in discouragement, approaching the bench where I sat.  I assured him that wasn't true, and offered new suggestions for him to try.  Little Guy headed out once again, but I could tell he was skeptical.  He zeroed in on a couple of kids playing on the grass behind me, approaching them cautiously.

They were busily jumping over a small, covered PVC pipe sticking up out of the grass and obviously having a great time.  Little Guy tried to engage one of them, but again chose an inopportune way and time.  The child failed to recognize his overtures, and my son was on the brink of failure again.  He glanced my way, but instead of running to me for help, he studied the situation for a moment before coming up with his own solution.

Without saying a word, Little Guy walked over to the pipe and stood on it.  Suddenly, he toppled off while waving his arms and legs, having pretended to "slip".  The other kids started laughing, then eagerly jumped in to play the new game.  Little Guy was soon talking and engaging with his "friends", and I was so proud of him for figuring out - entirely on his own - how to overcome his social dilemma.

Here's to progress!

The Best of Intentions

Little Guy has been blessed with a wonderful older brother, Middle Guy:



And while things aren't always perfect between them, Middle Guy can usually be counted on to look out for his little brother with love and patience.  When possible, he tries his hardest to include him in his activities and even goes above and beyond by trying to plan special events he feels Little Guy would like.

Unfortunately, even the best of intentions can sometimes go wrong when dealing with someone on the spectrum.

There have been recent occasions when Middle Guy's efforts have "backfired".  The worst was about a month ago, when he decided to spend some of his money to buy Little Guy a small lego set he wanted.  Middle Guy doesn't have a job, so his money is hard to come by, and he tends to be quite protective of it.  However, he and his little brother share a love of legos, so Middle Guy decided to generously help Little Guy build his own collection. 

The drama started at the store; they didn't carry the exact set Little Guy wanted.  Middle Guy was able to persuade his younger brother into going with a different set, but upon inspection of the box, he discovered it had been opened.  None of the bags with lego pieces inside had been opened, but there was no way of knowing if all the bags were present.  It was the only one on the shelf, so it couldn't be swapped out, and Little Guy was VERY adament it was the one he wanted.  Middle Guy ended up purchasing it, but showed the opened end to the cashier and was told he could return it if any pieces were missing. 

Little Guy wanted his brother to begin working on it the minute we arrived home.  We walked into the kitchen, were I began cooking dinner and Middle Guy started building the set.  Within five minutes, it was apparent that pieces were indeed missing.

That's when things came apart.

Little Guy began screaming and crying, insisting that his brother "fix" the problem.  While Middle Guy is a whiz at lego construction, the missing pieces were highly specialized and there was nothing in our spare lego bucket to fix it with.  Little Guy started grabbing pieces off the table, taking them into his room and trying to hide them in different places.  Middle Guy tried to reason with him, telling him he needed to return the pieces so we could take it back to the store and get a new set.  Little Guy began to hold the pieces tightly in his hands, to prevent his brother from prying them loose.  He began shouting, "I hate legos, I never want to play with them again!  This is all your fault!" before running into his room and slamming the door in his brother's face.

After talking with a sobbing Little Guy (and getting the pieces from him), I decided it would be best to leave him in his room until he could calm down.  I walked into the kitchen and resumed my dinner preparations, when suddenly I heard a sigh from the table.  I glanced over at Middle Guy, who had his head in his hands.  There were tears in his eyes as he looked at me and said, "I feel like crying, Mom.  I was only trying to do something special for Little Guy, something I thought he'd like."

My heart ached for my son, who had tried so hard to make his little brother happy.  I thanked him for his efforts before gently reminding him that the episode had been triggered by Little Guy's autistic behaviors, and to try not to take it personally.  I ended by telling him what a wonderful brother he is.

Luckily, we were able to exchange the lego set for another that Little Guy fancied - one with ALL the pieces included.  The evening ended on a happier note, although some of the excitement had evaporated from Middle Guy.  I just hope he won't be reluctant to plan special things for his brother in the future; although it may be difficult for Little Guy to express it, I know he treasures the time he spends with his big brother.



Food, Glorious Food

Food.

Or, should I say HEALTHY food.

This is something we constantly struggle with, the challenge of getting nutrition into a sensory-overloaded child.  Think of the pickiest toddler...then times it by ten. Many children start to outgrow their food aversions by the time they're ready to enter public school; not Little Guy.  I am not exaggerating - this kid won't even eat breakfast cereal with milk.

Here is a list of foods I know Little Guy will eat:  gogurt, string cheese, chicken nuggets, jello, fries, hot dogs, pancakes, bacon, garlic bread, and apple juice.

Added to this very short list are the foods he will eat on occasion (if it's a "good" day and he happens to be in the right mood):  peanut butter on bread, ham cubes, skinless apple slices, scrambled eggs, pears, mac and cheese, baby carrot sticks (only one, mind you), and plain spaghetti noodles.

The characteristics which make food appealing to most of us - textures, aromas, flavors - are just too overwhelming for my son.  Unfortunately, his limited diet makes it very tricky to ensure he's getting what he needs to grow and be healthy. 

I'm often forced to be sneaky resourceful when it comes to slipping nutrition into my son's meals.

One of my favorite methods is using Pediasure Sidekicks.  They tend to be strongly flavored, so I mix it with regular milk and call it a "milkshake".  It's a great way to get Little Guy to drink milk, and the "sidekicks" have extra protein and fiber.  I will sometimes make a real milkshake and add bananas or peaches to try and sneak in some extra fruit.  I've also introduced him to "orange fries" - aka sweet potato fries.  It's been a great way to add Vitamin A to his menu.  I've noticed that Little Guy is beginning to experiment with dunking, so I'll buy "apple dunker" packs (gala slices and caramel) at the grocery store.  I can sometimes get Little Guy to try something new by adding ketchup on his plate - even if it's only the tiniest little bite, I count it a success!

As Little Guy grows older, I'm confident his eating preferences will improve.  At least I won't have to worry about school lunch just yet, as Little Guy will attend school only half day as a kindergartner.  After that, I'm suspect we'll be packing lunches of gogurt and string cheese until my son can learn to tolerate - and enjoy - good food :)

A Breakthrough

I've mentioned before that Big Guy's diagnosis of Asperger's Syndrome wasn't officially given until he was quite old; nearly seventeen.

There were many reasons why this happened, the main one being that Asperger's Syndrome was a little known diagnosis 15 years ago when Big Guy was getting ready to enter the public school system.  As a result, he was misdiagnosed with ADD.  Medication helped his focus during school, but did nothing to address his other behaviors.

While I'm glad we were finally able to get the correct diagnosis for our eldest child, I feel it came at a time when we'd lost many opportunities for intervention.  Many of his behaviors became so ingrained that it's been a challenge to change them.  Big Guy also resented receiving this diagnosis, especially at a time when his self identity was just beginning to develop.  Whenever I tried discussing the topic of Asperger's or autism in general, he would grow very defensive and uncommunicative.  It's been a struggle, to say the least.

However, something happened recently that makes me believe Big Guy has started to accept his diagnosis.

About a week ago, the other family members were gone and I invited Big Guy to go out to eat with Little Guy and me.  As we pulled out of the driveway, he casually said, "I finally figured out why it bothers me so much when you change your mind about our family schedule; it's because of my Asperger's Syndrome.  I was reading about it online, and the article said that individuals with AS have a hard time with unexpected changes."

I was stunned; you could have literally knocked me over with a Q-tip.  Had my son just a) admitted he had Asperger's Syndrome  b) actually researched his diagnosis and c) was now talking about it openly with me?
I tried not to overreact or make a big deal about this development - it was really difficult, as I wanted to shout "hallelujah" at this breakthrough I'd waited so long for.  Instead, we began a 30 minute discussion about Asperger's Syndrome and how it impacts his life.  I asked my son if he'd told any friends of his diagnosis - the answer was one.  He said that he's told the others about certain "quirks" of his, but not that they're part of an autism spectrum disorder.  I asked Big Guy if he's bothered by having the Asperger diagnosis, to which he replied, "It doesn't bother me...but I don't like telling other people because they seem to make a big deal out of it."  I went a little deeper, asking my son if he views Asperger's Syndrome as a disability.  He thought a moment, then explained, "Perhaps in some ways.  But in others, I feel it gives me an advantage, such as my near-perfect memory."  We talked about his late diagnosis, and I shared my regret that it hadn't come sooner. 

All in all, it was a very open and productive conversation.  While I don't expect Big Guy to run around sharing his diagnosis with everyone, I feel he's finally come to terms with it and now accepts that it's part of who he is.  I'm hoping this acceptance will allow my son to continue to better understand his behavior and open the door for him to seek help and support when he needs it.

Are You Happy?

How does one express and feel happiness?

The answer to this is happiness is expressed in a myriad of ways and differs according to each individual.  However, I think I'd be safe in saying that the universal sign of happiness is a smile.

Individuals with autism spectrum disorders have an extremely hard time reading nonverbal social cues, including facial expressions.  This is something we've been working on extensively with Little Guy, trying to improve his ability to recognize what emotions are "written" on another person's face. 

Unfortunately, I've recently discovered our plan has backfired - Little Guy now believes that a person is only happy if they're smiling.  In other words, if a person isn't smiling, they're not happy.

This has created some issues, especially with his friends.

We recently had one little boy over to play.  This child is naturally sober and doesn't tend to smile often.  Little Guy happened to pick that day to be focused on the "smile to show me you're happy" mode, and the results were disastrous.

Within five minutes of playing, Little Guy asked his friend why he wasn't happy.  The friend tried to explain he was happy, to which Little Guy asked him why he wasn't smiling.  Over the course of the next several minutes, I heard Little Guy repeatedly asking his guest "why aren't you smiling" and say "please smile and show me you're happy."  I could feel the other child's frustration rising; even if he was happy to begin with (which I'm sure he was), that emotion had quickly fled under the demands that he produce a smile to prove it to his friend. 

I took Little Guy aside and said he was bothering his friend by constantly demanding he smile.  My son grew confused and sadly said, "I just want him to be happy."  I tried to explain that just because a person isn't smiling doesn't mean they're not happy and told him to stop asking his friend to smile.  My intervention helped the situation for a few minutes, then incredibly I heard Little Guy start in again.  I quickly reminded him of our conversation, to which he replied "Oh, yeah" and then stopped asking his friend to smile.  It took a few more reminders before my son finally quit pestering his poor friend, and we were finally able to enjoy the last few minutes of the play date.

I know my son will eventually grasp this concept with time, work, and practice.  I just hope for patience on my end as I guide him through this, and that his buddies will also be patient with him as he tries to improve his social skills.

Different and Alike

This is Big Guy and Little Guy:

One might automatically assume that because they share the same diagnosis and belong to the same family, they would have fairly similar personalities.

While they share some similarities, there are vast differences between them.  That is the nature of a spectrum disorder; a trait which might be severe in one individual could be very mild or even totally missing from another person - even if they're from the same family!

Here is a list of disparities between our two Aspie boys:

BIG GUY                             LITTLE GUY
Withdraws                             Acts out
Repetitive behavior                Sensory issues
Black/White views                 Echolalia
Obsessions                            Perseverance
Introverted                             Extroverted

This list demonstrates the similarities our boys share:

• Social issues
• Sleep problems
• Anxiety
• Aversion to physical touch
• concrete thinking
• Enhanced vocabulary
• Near-perfect memory
• "Gifted" range intelligence

I think it's important to recognize that while those who have been diagnosed with an autism spectrum disorder share certain behaviors, they are affected in different ways.  We've certainly seen this within our family, as our two ASD boys express themselves in their own, unique ways.  Our greatest successes have come as we've learned to appreciate our sons as individuals, rather than define them by their diagnosis of Asperger's Syndrome.

With Flying Colors

I know I left you hanging in regards with how things went on our California trip.

I apologize.

However, it gives me great pleasure to say that this "little guy":

came through with flying colors!

Our trip was absolutely WONDERFUL.  Although we had a few spectrum issues here and there, I can honestly say that Little Guy couldn't have handled it better.  The only lengthy outburst we had was at the beach, and that happened because Little Guy was unexpectedly knocked over by a wave.

While planning this trip, we put several strategies into place to help prevent problems.  First, we stayed at the same hotel we stayed in last time we visited Disneyland.  The familiar surroundings provided Little Guy with a sense of security about his environment, and made putting him to bed much easier.  I also brought our son's favorite foods and snacks, not knowing what would be available in the park.  This eliminated stress on my end as well, by having items on hand I knew Little Guy would eat.

We also utilized the "Superman" hat:

Many of Little Guy's issues are sensory based, and his anxiety level skyrockets in noisy environments.  This hat literally saved the day as it provided a necessary filter for our son, allowing him to be more relaxed in an easily overstimulating environment.  We allowed Little Guy to dictate much of the schedule, riding the attractions he wanted and taking train rides around the park if he seemed to need a break.  We were also able to use Fast Pass and other ways to eliminate waiting time in crowded lines; this was HUGE in keeping Little Guy regulated.  I think the longest time we had to wait in a line was 20 minutes.

All of these measures combined to make our vacation flow very smoothly.  We had such a good experience at Disneyland that we hope to return soon! 

Autism Awareness Month

April is Autism Awareness Month.

In anticipation of this event, last week my husband and I were able to give a presentation about autism at Dixie College as part of their Disability Awareness Week. 

It felt great to share our story -  as well as information and statistics about autism spectrum disorders.  The audience was comprised of students, faculty members, and a few personal friends, with the group's smaller size encouraging a discussion-type atmosphere.  Also in attendance was a family with four sons, each of whom have a diagnosis of Asperger's Syndrome.  Of course, I quickly felt a connection with the parents, a feeling which seemed reciprocated as I noticed them nodding at each other in agreement with my statements several times during the presentation.  In speaking with them afterwards, I learned that their oldest, whom is more severely affected by AS than his brothers, will graduate with a bachelor's degree from Dixie College next spring.  What an accomplishment!  It just proves that with encouragement, support, patience, and understanding, these individuals can accomplish great things :)

As part of spreading awareness, I've decided to step up my blog efforts and publish at least 15 entries this month.  These might address facts or statistics, express my opinions, or simply just illustrate the daily life of our family.  Please check back often...and please, feel free to share this site with others - especially those whose lives are affected by this diagnosis.  This can often be a difficult and lonely road to travel; knowing others who are experiencing the same issues can help make it seem a little easier.

Keeping My Fingers Crossed...

As part of Spring Break, our family has something special planned.

A trip to "The Happiest Place on Earth"

That's right...Disneyland!

However, Disneyland can be "the most sensory overloaded" place on Earth for kids on the spectrum.  For President's Day weekend, we took our family down to Las Vegas for a day, and I decided this trip would be a good test run for Little Guy on how he might handle sensory overload.

Let's just say things did NOT go well.

I'm hoping this trip will be better, and I"m doing all I can to help minimize problems we might encounter.  Of course, the Superman hat will accompany us, and we have some backup plans in place in case of meltdowns.

Needless to say, I'm keeping my fingers crossed :)

Straight From the Box

See this?

This is one of the few things I know Little Guy will eat.

So, when our family was eating at Arby's this evening, it seemed like a safe choice from the kid's menu.

However, when the food arrived at our table, we had a meltdown on our hands.

You see, the mac and cheese served at Arby's was in a different container, convincing our son that it was NOT the kind he's accumstomed to - even though the menu said "Kraft" macaroni and cheese.  I'm sure some patrons dismissed our child's behavior as "spoiled", but we were able to recognize the episode for what it  was - Little Guy's inability to handle unexpected change.  We were finally able to calm him down, and eventually got him to try a single noodle.  Yet even after tasting it, Little Guy refused to eat the rest of the"strange" macaroni.

I've learned my lesson; I'll put mac and cheese on the "fail safe" list only if it comes straight from the box :)

A Glimpse of Their World

My husband and I recently watched a movie that really hit close to home.  The movie is called "Temple Grandin", and it was originally produced by and aired on HBO.  It's based on the true story of a woman named Temple Grandin who grew up in a time where autism was grossly misunderstood; the common remedy was to place these individuals in an institution.  Through the hard work of her mother, Temple was able to defy the odds by graduating from college and becoming a highly respected expert in her area of focus.  She has also has written several books about her life with autism and is a popular lecturer for conferences that address autism spectrum disorders.

There were several things I enjoyed about this movie.  First, I appreciated how the sensory issues were portrayed.  Sounds were highly exaggerated, such as the opening of an automatic door and a marker writing on paper.  There was also a very limited list of items Temple would eat, and she had aversions to particular clothing because of the way they felt.

We also appreciated the struggle Temple had when it came to accepting change; this is something we are constantly working on in our house :)  There were times throughout the movie where Temple would repeat something she'd heard over and over again, a phenomenon known as echolalia.  Little Guy also does this on occasion.  Sometimes, she'd get "stuck" on one idea or concept and was unable to move on - this is called perseverance, which we often see in our little son.  There is also a sequence of shots which portray the tendency of literal thinking that many people on the spectrum have.  These were often quite funny, and lent a quirky humor to the film.

One of the main themes this movie addressed was the Temple's inability to recognize and understand the social cues of society.  This proved very frustrating at times and affected her ability to make and maintain meaningful relationships.  This behavior is something that every person on the spectrum struggles with, and it can create chaos and disruption at home and at school. 

Despite Temple's disruptive and sometimes embarrassing behavior, there were individuals who were able to look past her handicap and recognize her enormous potential.  Her mother, an aunt, a high school teacher, and a college roommate helped form a support system which allowed Temple to grow, and eventually, excel by gaining self-sufficiency skills.  She became an independent, educated individual who has positively impacted our society, thus proving that the only "disabilities" we have are the ones we set for ourselves.

I would highly recommend this movie, especially to those of you who live or work closely with someone who's on the autism spectrum.  Not only does it provide insight to the world of autism, it promotes hope with its positive message.

A World of Difference

As I 've mentioned before, Little Guy's behavior has taken a downward turn the past 4-6 months.  Where we used to have meltdowns on a weekly basis, they now happen multiple times daily.  The intensity of the meltdowns has also increased, as has the length.  At certain times I can sense them coming; other times, they seem to crop out of nowhere.

As part of our desire to help Little Guy, we scheduled him to see a pediatric developmental specialist from Primary Children's Medical Center.  This doctor, along with other specialists from the Salt Lake area, comes to St. George every 2-3 months.  Last time Little Guy was evaluated by an autism "specialist" from our school district, it did not go well.  After two 30 minute evaluations (one at home, one at school), this individual informed me that Little Guy no longer had Asperger's Syndrome.

I was stunned; all of the studies I've read indicate that autism is something you never outgrow.

When I brought up the anxiety, inflexibility of schedule change, and sensory issues my son has, this person said, "Well, it sounds like he has anxiety, OCD, and a sensory processing disorder.  But, not autism."

Can an accurate evaluation really be given based on a mere hour of observation?  I left the session feeling angry, and more than just a little frustrated.

Needless to say, I came into yesterday's appointment ready to fight.

Amazingly, my list of convincing evidence was unnecessary.  After a quick introduction, the doctor was ready to listen to my concerns.  Little Guy was quietly coloring in the corner and not exhibiting "typical" autistic behavior at that moment, so I mentioned that he was was on his best behavior.  The specialist answered, "Well of course he is - I wouldn't expect him to act out right now because no demands or stressors are being placed on him." 

Wow - a doctor that really, truly understood my son's behavior.  I wondered what the difference was between him and our district "specialist" - besides the MD behind his name.

The difference, I discovered, was that he's the parent of a child on the autism spectrum.

And what a difference it made!  Here was a professional who not only has the textbook knowledge, he actually experiences on a daily basis what it's like to have an autistic child.  Instead of having a one-sided "lecture," we had an in-depth conversation about Little Guy's escalating behavior issues.  I learned that it's not uncommon for some kids to have a worsening of their autistic traits around this age, and that the meltdowns Little Guy is experiencing are a common behavior in kids with Asperger's (we never saw it in Big Guy).  It even has a name - the "rage cycle".  He referred a book to me called Asperger's Syndrome and Difficult Moments which analyzes this "cycle" and offers strategies about handling each stage of the meltdown.  I laughed when I read the title; it describes our life perfectly right now :)

We also discussed what we're already doing to help minimize these episodes, as well as our newly started therapy sessions.  The doctor seemed pleased with the idea of therapy and suggested we stick with it for an extended period of time as it often takes a while to see its full benefits.  I also asked for a referral for the PCMC child psychiatrist who initially gave Little Guy's diagnosis; unfortunately, there is quite a waiting list for her (4-6 months)  :(   However, I'm keeping my fingers crossed that we can get in to see her before Little Guy begins kindergarten at the end of the summer.  We also tossed around the idea of starting Little Guy on an anti-anxiety medication if the measures we're taking aren't enough to prepare him to enter school in the fall.  I realize that medication can sometimes bring its own problems, so any decision to begin one would be made after careful research and consideration. 

As I left the appointment, my heart felt much lighter.  Finally, I felt like I was not only heard - but understood.  This encounter gave me the hope that as we travel along the spectrum with our son, there will be others ready and willing to lend their support.  Others who have also walked the same path.

And that knowledge makes a world of difference :)

Daddy Saves the Day

See this creature?

His name is Big D.  He's the mascot for Dixie State College.

Little Guy LOVES Big D.

Last week, my husband invited Little Guy to attend a DSC basketball game with him so they could have some bonding time.  Basketball games are full of sensory issues (noise, crowd, etc.) so Daddy planned in advance by bringing along Little Guy's Superman hat (see post here) and arriving at halftime for a shorter stay.

However, Dad forgot one thing:  Big D.

Or rather, I should say Little Guy's obsession with Big D.

As soon as they walked in the arena, Little Guy's mission became to catch the mascot's attention.  Every time Big D would face their way, our son would excitedly wave his arms - only to be seemingly "snubbed" by his idol.  My husband sent Little Guy a few rows down where Big D was talking to a group of kids; but by the time he got there, Big D had turned his back and was walking away. 

Little Guy became increasingly upset and frustrated as the game wore on.  As an adult, one can understand that Big D's job is to work the crowd and get them cheering for the team.  He has a lot to do, and the mascot head is large and makes it difficult for him to see everything - making it easy to overlook a small child.  However, Little Guy didn't understand these details; he could only see that Big D wasn't paying attention to him.  He was trying hard not to "lose it" but was becoming dangerously close to having a big meltdown.

This is where my husband intervened.  After watching Little Guy's thwarted efforts and sensing our son's growing anxiety, he decided to take matters into his own hands.  Although it was a close game, Dad decided it was more important to help Little Guy track Big D down and get the "high five" he was so desperately wanting.  So up and down the aisles they went in an effort to catch the mascot; apparently at one point, they were even running down one of the empty rows, hopping over the chairs in order to reach him.

Finally...they had success!  Daddy said they'd had many strange looks during their "chase", but that it was all worth it to see the big smile on Little Guy's face when he shook Big D's hand and received the long-awaited high five.  Little Guy came home ecstatic; Daddy came home exhausted :)

Thanks to my hubby who was so understanding of Little Guy's needs and was able to turn a potentially disastrous situation into a positive one.  I am so glad he stepped in to save the day!

The Right Direction

Last week, Little Guy had his initial assessment with a new therapist.  During the session, we discussed many issues, especially my main concern that Little Guy seems to be quite disregulated lately.  The therapist asked if we'd recently had any major changes within the family;  as I thought about it, I realized there have been many disruptions in our household the past several weeks:

We celebrated three major holidays.

Big Guy and Sis both moved back home.

My husband has been out of town more than usual.

We just welcomed a foreign exchange student from Japan who will be staying with us for two months.

Yes, I guess one could argue we've experienced some major changes lately, which might help explain some of Little Guy's increased anxiety levels.  Individuals on the spectrum do NOT take to change very easily - as any of you who live or work with these children know :)  However, I feel this doesn't completely explain Little Guy's behavior, as it began regressing about 3 or 4 months ago. 

Perhaps it's the stress of attending a  more "normal" school? 

Whatever the reason, tomorrow we begin weekly therapy sessions to address Little Guy's anxiety issues.  Our first goal is to help Little Guy begin to recognize when his anxiety levels are escalating.  Once he realizes he's in danger of feeling overwhelmed, his next step would be to let us know so we can help him calm down.  Our ultimate goal is for Little Guy to eventually learn his own ways to regain control over his emotions and behavior when he is feeling anxious. 

I know I can't expect change to happen overnight;  in fact, this could be a long, arduous process.  However, I feel we're taking a step in the right direction!

Back to the Drawing Board

I apologize for the gap between posts - we had a crazy holiday break, and it's taken me some time to get back into the swing of things.

December was NOT a good month for Little Guy.  For a few months now, we've felt he's regressed in several areas of his behavior; last month, our suspicions proved correct.  Little Guy has been having a much harder time staying regulated at home and school, which is translating to more frequent and more intensive meltdowns.  

We are doing all we can at home to help manage these outbursts, but unfortunately, it just isn't enough.  Little Guy struggles with a great deal of anxiety, which we've been unable to help him cope with.  This, in turn, triggers feelings of frustration and anger when he's dealing with certain situations.  This cycle is affecting his ability to maintain relationships, perform at school, and is creating a lot of stress in our home. 

In other words, it's time for a change.

We've gone back to the drawing board for ideas on where to turn next, and have decided to pursue a few different routes.  First, we are having him evaluated by Intermountain Southwest Behavioral Health.  They have a couple of therapists who work exclusively with children and are  experienced in dealing with autism disorders.  We are also working to get him seen again by Dr. Roth, a psychologist from Primary Children's who gave Little Guy his initial diagnosis of Asperger's Syndrome a couple of years ago.  If these measures don't work, we've recently learned of a new program in the area that appears to take a comprehensive, aggressive approach to treating autism.

As Little Guy will be entering public school in the fall, I feel it's extremely important we address these behaviors as soon as possible.  If Little Guy was expected to go to kindergarten now, I honestly don't think he'd be able to handle it :( 

Luckily, we were able to get our little one in for his initial therapist evaluation this coming Monday.  I'm interested to get feedback from a professional standpoint and hope this is the beginning of a positive era in our family's battle with autism.