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.