School Days

As summer began to wane last year, I found myself in a state of near panic.

Panic brought on by worries of Little Guy starting public school.

To tell the truth, I did not feel my son was even remotely ready for the sensory onslaught of school.  Little Guy's anxiety level is in overdrive on most days, and school can be stressful...even for the "neurotypical" child.  I did what I could beforehand to have services and strategies put into place, but it was difficult as Little Guy was not coming from the district preschool and was no longer on an IEP.  As I dropped off my son for his first day of kindergarten, I tried to act positive and excited for his sake; on the inside, my stomach was tangled into knots.  I spent all afternoon near my phone, waiting for the school to call and tell me that Little Guy was in the middle of a huge meltdown.

That call never came.  And, I'm happy to report, has yet come this school year.  

Yes, this boy has exceeded all expectations regarding his ability to regulate himself at school:

That's not to say it hasn't taken an ongoing, coordinated effort between the school, his teacher, and myself.  Some of his goals have taken months to achieve, such as tolerating riding the bus home - we're up to four days a week now.  There's also been concern regarding challenging him scholastically; what does a teacher do with a kindergarten student who already knows the concepts of time, money value, number placement and addition/subtraction into the thousands, as well as basic division, times, and fractions?  

However, I have to say that overall we've realized the hope I'd set for my son at the beginning of the year - that he'd have a positive start to his public school career.  I think we've achieved that :)

As this school year is winding down, we are already looking ahead.  According to the psychologist we see from Primary Children's Hospital, first grade could be the real test of Little Guy's capability to handle school as he will be attending full day as opposed to only a couple of hours.  I'm feeling much better this time around as the school staff are familiar with my son and have proven to be willing to work with his unique challenges.

And who knows...maybe Little Guy will prove me wrong again and be a rock star when it's time for first grade!

Does My Child Have An Autism Spectrum Disorder?

As April is Autism Awareness Month, I thought it would be appropriate to share some information about the early signs to look for in young children. I firmly believe the sooner any problem is found, diagnosed, and treated, the better the long-term outlook is. I know it would have been EXTREMELY beneficial if our eldest son had been diagnosed with Asperger's Syndrome in early childhood rather than his mid-teen years. By the time our youngest was born, we knew what to look for and were able to get him into an intervention program as a toddler.  As a result, Little Guy is in a much better place with his social skills than his older brother was at the same age.

When I share some of Little Guy's autistic traits with others, without fail someone will say, "But my child does that, too.  Does that mean they have autism?"  The answer is probably not.  We all have some traits found on the spectrum; the diagnosis of autism or another spectrum disorder might be made if an individual has most of the indicators and if the indicated behaviors are more extreme than his typical peers.

The following excerpt was taken from an online article about identifying autistic traits in babies and young children:

*Watch for the Red Flags of Autism*

(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.)

In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:

No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age
*This information has been provided by First Signs, Inc. ©2001-2005. Reprinted with permission. For more information about recognizing the early signs of developmental and behavioral disorders, please visit http://www.firstsigns.org or the Centers for Disease Control at www.cdc.gov/actearly.

Here is a list of additional signs to watch for during the second year (13-24 mos.):

MOTOR:
*May exhibit toe-walking, rocking, head-banging, whirling without dizziness, hand-flapping, touches everything.
*Difficulty planning and sequencing movements, or move about without direction or purpose.
*Oblivious to people or objects when in motion
*Delayed motor skills

SENSORY-PERCEPTUAL:
*Withdraws from environmental stimulation
*Engages in self-stimulation
*Preoccupied with spinning objects
*Doesn't use gaze (eye contact) to regulate interaction (may turn away or move away when being touched and spoken to simultaneously)

SOCIAL-EMOTIONAL:
*Moves adult's hand like tool
*Insists on sameness and routine
*seems to prefer objects to people
*Doesn't bring objects to show caregiver
*Doesn't look to caregiver for approval, pleasure, or to indicate a desire

LANGUAGE/COMMUNICATION:
*Echolalia (echoing words and/or phrases), delayed echolalia unrelated to social context
*Pronoun reversals or omission
*Voice atonal, hollow, arrhythmic
*May not wave or say "hi" or "bye", or shake head yes or no
*May not point to gain caregiver's attention to desired object
*May not imitate sounds or words
*May not look to speaker when name is called

MENTAL REPRESENTATION:
*Little appropriate use of toys
*May not look at books
*May focus on repeated actions, routines (e.g., line up toys, dump baskets of small objects, repeat same button or lever on mechanical toy)
*Doesn't laugh appropriately at caregiver's humorous or surprise action
*Little endurance for persisting with an object or person

(information copyrighted by Barbara Kalmanson & Janet Green Babb, 2008)

If you have any doubts or concerns about your child's development, PLEASE bring it up with your health care provider.  I understand this is a lot of information...but information equals empowerment for any parent!

Stuck

Individuals on the spectrum often have a type of behavior called "perseverance."  Normally, to persevere after something is an admirable trait, but those with autistic tendencies can carry this concept to the extreme.  In other words, they become "stuck" on something, and it can be extremely difficult for them to change gears.  

During the Easter holiday, Little Guy became obsessed with this:

Finding the golden egg.

Both of Little Guy's grandmothers host an egg hunt, and both of them have a golden egg filled with money as the ultimate prize.  For three days before the first hunt, Little Guy informed me he was going after the golden egg and talked about the toys he wanted to buy with the money inside.  I warned he might not find it; with 27 grandchildren on my side and more than half of them older than my son, I knew the odds were not in his favor.

The day arrived, and Little Guy filled the hours with talking, scheming, and dreaming about that golden egg.  All through the barbecue beforehand, he discussed his plans with his cousins and worried mightily during the regular hunt that someone might accidentally discover the special egg before he had a chance to look for it.

Finally, it was time.  I was worried about what might happen if Little Guy didn't get the golden egg, and prepared for the very real possibility of a meltdown.  13 kids were in the hunt for the prize...and someone other than Little Guy ended up finding it.  To his credit, our son didn't have a meltdown although he was very disappointed.  He followed his older cousin around for the rest of the evening, talking about the golden egg and repeatedly asking to touch it.  Little Guy was clearly having a hard time letting go of the idea which had consumed him for much of the week.

It persisted through the next day as well.  I was watching television with Little Guy the following morning when he suddenly announced, "It's okay that C (his cousin) found the egg."  Later that evening, we attended the baptism of one of my nieces.  Unknown to me, Little Guy found his cousin C during the refreshments afterwards and said he "forgave" him for finding the egg!  Clearly, thoughts of the golden egg had been dogging him throughout the day.

The next day brought the egg hunt held at my father-in-law's ranch.  We'd received word that many of the cousins were going to be absent, and instead of disappointment, Little Guy was ecstatic knowing his chances of finding the golden egg had grown overnight.  At the last minute, a family with young cousins decided to join us.  Little Guy became upset and said, "But one of them might find the golden egg instead of me!"

I really hoped my son would find the egg this time...if only because we could then put this nearly week-long obsession to rest.  This second hunt proved successful for Little Guy and he became the proud owner of a golden egg!  However, his triumph didn't lessen his focus on the golden egg;  he recounted to everyone how he had found it, then even put it back in its hiding place and showed his cousins where it had been (even though they were there when he had discovered it).  After he had led one of his cousins back to the egg's hiding place for the 3rd or 4th time, I took Little Guy aside and told him it was time for the egg to "rest".  Even then,  for the rest of that day and the day after, I would hear my son randomly say, "I can't believe I found the golden egg!"

Sometimes, this single-minded focus can be exhausting.  However, I feel it could be a very beneficial trait;  we just need to help Little Guy persevere about the right types of things.  With that kind of drive channeled in the right direction, the sky's the limit :)

Expressing Emotion

As I mentioned in my last post, I have two sons with Asperger Syndrome.  One would think with the same diagnosis, my sons would have identical behaviors.  This is true in some aspects; in others, they are complete opposites.

Such as dealing with emotion.

Big Guy tends to repress his emotions by withdrawing and isolating himself.  I remember in elementary school he would have an occasional meltdown, and I would be surprised to learn of some problem he'd been dealing with for weeks without any indication that something was wrong.  Consequently, there are still things which come out occasionally about past events, and my heart bleeds as wish I would have known what was going on so I could have helped my son navigate through those tough times.

Not so with Little Guy.  His emotions are always on the surface and you know exactly where things stand with him.  I'm sure it's healthier than repression...but it sure can be frustrating as we deal with meltdowns on a daily basis.

As we struggle to help my youngest son learn how to appropriately express his emotions, one key component is first helping him identify what emotion he is feeling.  Many times when he is upset, he knows he's full of "bad" feelings but doesn't understand why he is feeling that way.

For example, I was getting ready yesterday morning when Little Guy came storming into my bathroom.  He had the lid to his Lego bucket in his hand and yelled, "I hate this thing, let's get rid of it!  Let's throw it away right now!  I just want to break it!"  And with that, he threw it violently on the floor.

I happen to know my son loves that lid; it's made of "lego" bumps on the top and he often uses it as a base on which to built castles, houses, etc.  I'd seen him using it earlier in the morning, and I guessed the whole incident was based on something which had gone awry with his building plans.

I picked up the lid and reminded my son about our rule of not throwing things.

"I hate it!  I hate all of my Legos!"

"No, you don't," I said calmly, "You're frustrated and upset because it didn't work the way you wanted it to."

Once I put a label to his feeling - frustration - I was eventually able to calm him down and he went back to playing.  

Of course, yelling and throwing things aren't the best coping mechanisms for expressing emotions, so we work hard with Little Guy to help him learn other ways of handling his feelings.  We've had a recent breakthrough which is very encouraging to us, one which Little Guy began doing on his own.

Twice in the past couple of weeks, I've found messages such as this:

This is a note Little Guy wrote to Middle Guy after he'd spent over 30 minutes unsuccessfully trying to convince him to give him one of his books.  It says "I am SAD!"

While I know it won't happen overnight, my hope is that Little Guy will begin using better coping mechanisms on a more regular basis.  Until then, we'll continue to manage the meltdowns while avoiding thrown objects :).

Two Who Are "Lighting It Up Blue"

Today is World Autism Awareness Day, kicking off April Autism Awareness Month with a theme of "Lighting It Up Blue".  In its honor, I've decided to go ahead with a LONG overdue post.

You see, the autism spectrum affects our family...actually, in a double dose.

Two of our sons are diagnosed with Asperger's Syndrome.

We have two who are "lighting it blue":

These are our bookends: our eldest and youngest children.  In some ways identical; in others, vastly different.    Yet, both wanting to be loved, valued, and accepted for the unique individuals they are.

It's difficult to adequately convey how having them as part of our family impacts my daily life.  However, I've resolved to publish a series of posts throughout April addressing different aspects of autism with the goal of spreading awareness and understanding of this often misunderstood diagnosis.  I invite you to join me as I once again share our family's journey of living life on the autism spectrum.

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?"