Saturday, May 30, 2009

Fireworks

I'm talking the behavioral variety.

Last night, we drove our family to the local rec center to swim. It takes Little Guy a while to warm up to this idea, so all day I kept reminding him that we were going to the swimming place with the "big bucket that dumps water". He became really excited and kept asking if it was time to go yet.

We arrived a little later than planned, but a full hour before they closed - or so we thought. I had taken Little Guy back into the dressing rooms and changed him into his swimsuit before we discovered that the pool closes one hour early on weekends.

BIG TRAUMA resulting in this:A HUGE MELTDOWN.

Little Guy has trouble with transitions and surprises anyway, but this was just about more than he could handle. Here I'd been preparing him for this special event all day; we drove to the facility and everything, even putting his on swimsuit only to have our plans fall apart.

Confusing enough for a "normal" two-year-old. But for one with an Autism Spectrum Disorder, this disruption in routine can be devastating.

Desperately trying to calm our frantic toddler, my husband and I scrambled to find a Plan B. There was no way we could go home without swimming first. It was growing late at this point; many of the indoor facilities were closed, and the bad weather precluded any outdoor options that we had.

Luckily, I remembered that the gym where I hold a membership has a pool (which I've never used). I made a quick call and discovered that it was scheduled for "family swim" for another forty minutes.

We booked it over there as fast as we could!

Little Guy was able to go swimming, and this story had a happy - if somewhat unplanned - ending.

Thursday, May 28, 2009

Terrific Thursday

I realized in the MIDDLE OF THE NIGHT that Wednesday had slipped by without posting about the wonderful things my boys have done this week.

I guess you'll have to settle with "Terrific Thursday" instead.

It was a big week. HUGE. As I mentioned briefly in my last post, Big Guy graduated from high school.

With honors!

The plan is for him to remain at home for a couple of years while attending a local college, then transition him to living on his own.

We'll see how that goes.

Little Guy has made some huge strides lately in the social arena. He is giving us more eye contact, and there is talk of transitioning him to the "normal" play group every other week at our Early Intervention Center.

Great job, guys!!

Monday, May 25, 2009

A Letter to My Son


Big Guy graduated last weekend.

I've often wondered how I'd feel when we approached this new chapter in our lives. Graduation day was filled with a variety of emotions: pride, sadness, relief, nostalgia.

Several years ago, I wrote a letter to Big Guy as an assignment in a collegiate child development course. This letter was meant for the day when our child would be leaving us. I'd forgotten all about this assignment until I rediscovered it seven months ago as I was preparing for our latest move. Delighted, I saved it in a special place and gave it to Big Guy after his graduation ceremony.

Here it is:

The following letter was written 12 years ago as an assignment for a college child development course. I rediscovered it during our last move, and gave it to Bronson after his graduation on Thursday:

To My Dear Son,

It's difficult to believe how quickly you've advanced into your childhood; you have just begun first grade now, and it won't be long before you will depart my sheltering wing, eager to fly on your own. This letter is for that day when you'll be leaving us. It really seems mere moments ago that your father and I received the unexpected news that you were "on the way". I was thrilled; I had always wanted to start my family soon after marriage and could hardly wait to become a mother.

I hope that you can look back fondly on your years at home, and also hope that you won't be too critical of my parenting skills. I believe that good parents work towards achieving what is best for their children through teaching them responsibility and demonstrating an unconditional love. I have tried to do the same for you. Besides these elements, I have tried to tap into my better qualities by providing an atmosphere of creative fun, love of the arts, and respect for others in our home. I know that being firstborn isn't easy, for I am also an oldest child, and I vowed to never expose my eldest to the strictness with which I was raised. However, I often find myself tending to set my expectations too high for your age and abilities. I also know that I tend to lose my patience easily at times. I hope you are able to look beyond these shortcomings and arrive at the realization that I was trying my best, and that I love you very much.

With your future shining bright before you, I would hope that you are happy with your life and are able to recognize and capitalize on those special talents that make you such a wonderful person. In Shakespeare's "Hamlet", the character Polonius offers this advice to his son as he prepares to seek his fortune: "This above all: to thine own self be true, and it shall not go false with any man." I would encourage you to remain true to yourself; to preserve your self-integrity, and to remember and hold true to those beliefs, morals, and ideals you know to be right. In doing so, you can never go wrong.

Goodbye, my son. I love you very much.

Mom

Wednesday, May 20, 2009

My, Oh My, What a Wonderful Wednesday

Well, folks - Wednesday has rolled around again.

You know what that means....it's time for "Wonderful Wednesday". For those of you who may be new to this blog, I've decided to devote Wednesdays as my day to celebrate and share the accomplishments and milestones my two Asperger sons have reached during the week.

And I have some great ones to share.

As I mentioned in my last post, Big Guy is quite good at English. His efforts in this subject paid off last night as he was awarded his school's Outstanding 12th Grade English Student of the Year. He also received a journalism pin for his contributions as a writer for the school newspaper.

Way to go, Big Guy!

Little Guy's accomplishment was not as spectacular, but no less important. He actually succeeded in taking off two articles of clothing by himself - his sandals and pajama pants (at different times). Some of you might be thinking "big deal, but at age two and a half, undressing oneself is something most toddlers do on a regular basis. This is a milestone in the area of self-help, where Little Guy is testing about 9-12 months behind. It is also important for kids to be able to remove their clothing as they learn to potty train, which we hope to attempt sometime in the coming months.

All in all, it's been a pretty exciting week!

Monday, May 18, 2009

Finding a Niche

Individuals with a diagnosis falling on the autism spectrum often view life in unique ways:


Sometimes, an unconventional perspective is what it takes to do something truly innovative, something totally new.

Many experts believe that several prominent historical figures displayed qualities consistent with diagnoses on the autism spectrum. This list includes names like Mozart, Edison, Beethoven, Newton, and Jefferson.

And let's not forget people like Temple Grandin, who live in modern times. Dr. Grandin is an expert and innovator in the cattle industry, as well as a major contributor to autism research.

The key to these individuals' successes?

Finding their passion and using their strengths to capitalize on it.

Just as in the "normal" population, the gifts of people on the autism spectrum vary widely in scope and strength. But whatever the degree, they are there and the discovery and nurturing of them are critical in helping these individuals find their niche in life.

And who knows....you just might discover another Galileo in the process :)

Big Guy's passion is English. He could read at a 12th grade level by 2nd grade and is an exceptional expository writer. His current ambition is to become a college English professor, a dream he plans to pursue after his upcoming high school graduation.

And what about Little Guy?

Based on what he's been building with his blocks the past few months, I think he could become an architect:


That, or an engineer.

I can't wait to find out!

Sunday, May 17, 2009

A Bit of Humor

Sorry for the hiatus; we've been passing around a stomach bug at our house, and I was its latest victim :(

Anyway, I've found that having a sense of humor can drastically improve one's outlook on life; this is especially true for the events we can't change. I found some t-shirts on the web that I believe every parent with an autistic child can relate to :)

Here are some of my favorites:






Wednesday, May 13, 2009

Another Wonderful Wednesday....

As I previously mentioned, I've decided to dedicate Wednesdays as a means of celebrating some of the accomplishments my Aspie sons have shown during the week.

First off, Big Guy just submitted his paperwork to become an Eagle Scout. This has been in the works for some time, and we have many people to thank for helping him to get to this point. With his 18th birthday only six weeks away, it didn't happen a moment too soon!

Little Guy has been occasionally waking up with dry diapers the past couple of weeks, so I decided to see what would happen if I stuck him on the potty right after he woke up in the morning. Voila! He went!! He tolerated sitting on the toilet pretty well, and has actually seen a few other successes since. He is not telling me when he needs to go and can't take off his clothes yet, so I don't think that complete potty training is right around the corner.

However, I think we're off to a promising start :)

Tuesday, May 12, 2009

Diagnosis

We recently received Little Guy's "official" diagnosis of Asperger's Syndrome. Until now, it was only assumed that he had Asperger's due to our family history and the many autistic-like characteristics he was displaying.

It was harder than I thought it would be.

Having been through this once before, I was surprised at the myriad of emotions that overtook me.

Shock. Anger. Guilt. Grief. Acceptance.

In many ways, it's like the grieving process. But instead of mourning the physical passing of your child, you are mourning the death of many of the hopes and dreams you had harbored for them.

However, dreams can be reborn - and you learn to cope with the new "normal".

And actually grow to enjoy it.

I love the analogy given in the story "Vacation to Holland". It talks about a person planning the trip of a lifetime to Italy and the preparation, anticipation, and joy that goes into it. However, something goes awry on the journey and the tourist finds himself disembarking in Holland instead of Italy. Holland is totally different than Italy, and at first the tourist is upset and disappointed. Yet, it doesn't take long for him to notice the nice things about Holland like the tulips and the windmills. Things are slower-paced than in Italy, but the traveler learns to adapt to this difference as well. Although circumstances did not bring the tourist his dream vacation, he learns to appreciate the beauty and uniqueness of this unexpected destination.

So it is with the parents of a child with special needs. Sometimes life has a different destination in store; you didn't plan for this to happen, you didn't want this to happen.

But happen it did. And it is up to you to find the beauty and grace in the unexpected situation.

Because the tulips are there, just waiting to be discovered.

Sunday, May 10, 2009

Being a Mother

I was planning on a different post today, but decided on this theme instead in honor of Mother's Day.



As a mother of two sons with special needs, I've pondered how my experiences with them have changed my perspective of motherhood.

Because having a child with special needs certainly brings a new dynamic to the demands placed on me as a mother:

- There are times I feel lonely and isolated as I see mothers with "normal" children around me.
- There are extra sacrifices I am required to make as I try and prepare these sons for life in the "real" world.
- There is a certain amount of guilt I carry; was I responsible in some way for creating these problems for my children because of something I did or didn't do during my pregnancies?
- There is also the constant worry that I am spending too much of my time on my autistic children to the detriment of my two "normal" kids.

In spite of these challenges, I know that my time with my "Aspie" sons has definitely shaped me into a better person.....and a better mother.

*I have become much better educated about the psychological and neurological development of children, as well as the differences that accompany an autistic child.
*I have had opportunities to become a help and mentor for other mothers struggling with a diagnosis of autism for their child.
*I have learned to become a stronger advocate for my children - both the autistic and neurotypical ones.
*I have learned patience as we work on certain developmental milestones over and over again before they are finally conquered.
*I have learned to appreciate the little things in life, as many of my sons' accomplishments are everyday events that people often take for granted.
*I have learned that I am stronger and more capable than I had ever imagined.

Motherhood itself is a difficult job, but parenting a child with special needs can make it even harder. Yet, due to the extra effort it often requires, I believe being a mother to these wonderful children brings even greater rewards in many ways.

Like when Little Guy and I are at the park moving through his daily ritualistic order of swings, slides, and monkey bars and I notice that our hands, although different sizes, are somehow a perfect fit.

Or when Big Guy is excitedly relating yet again one of his favorite "Far Side" cartoons with his special, crooked smile covering his face.

But especially when one or the other gives me one of their rare hugs. That's when it hits me. Hard.

Just how much I love being a mother.

Their mother.

Thursday, May 7, 2009

Kids Say the Darndest Things

Kids say the darndest things.

So do teenagers with Asperger's Syndrome.

Persons with Asperger's tend to see things in black and white. This is often evident during their conversation; when they speak, they often tell it exactly how they see it. Concepts such as omission or editing of words to avoid hurting others' feelings are often foreign to them. These strategies fall into the gray area, and gray is confusing.

Having few inhibitions when one speaks may seem very liberating, but it certainly can be embarrassing to their parents.

Imagine my chagrin when I recently had a conversation with one of Big Guy's youth leaders from our church and he related the following story:

Apparently, members of the our church's youth group have been trying their hardest to include Big Guy in their activities. Most of their overtures have been resisted, some rather rudely. Upon learning about my son's recent job at a fast food establishment, the youth leader had a great idea. Why not bring the activity to Big Guy by treating the boys in the group to milkshakes during his shift? The leader enthusiastically presented his idea to my son, who quickly shot it down.

"I don't think that's a good idea, it will be too distracting for me," was Big Guy's reply. The real kicker is, Big Guy was working in the back of the restaurant so how big of a distraction could this plan really bring?

Stunned, the youth leader tried addressing my son's logical side. He pointed out that more customers meant more business for the establishment, which in turn provides greater job security for Big Guy. He also mentioned that as a business owner himself, he knew he wouldn't appreciate it if he learned an employee was intentionally turning customers away. The youth leader asked once more if the youth group could come, confident that the answer would be "yes" this time.

"No, I really don't want you to," was Big Guy's reply.

I just hope we make it to the second paycheck!

Wednesday, May 6, 2009

Wonderful Wednesdays

Sometimes it's easy to get caught up in the challenges of having a child with special needs.

It's important to remember that there are many good times that come, as well.

And these moments are made even sweeter because of the effort it takes to reach them.

With this in mind, I'd like to dedicate my Wednesday posts as a wonderful way of celebrating some of the positive things that my "Aspie" boys have achieved during the week.

Let's begin with Little Guy:

I know he's stuffing his face in this picture, but he really is a notoriously picky eater when it comes to anything other than junk food.

Our family decided to eat at an Asian restaurant over the weekend. While I knew the older kids would love it, I'd resigned myself to feeding Little Guy his own special dinner once we got home. I knew this particular restaurant served saltine crackers as part of the meal, so Little Guy wouldn't "starve" in the meantime.

Imagine my surprise when Little Guy picked up some practice chopsticks and proceeded to eat some of his white rice. And then, asked for soy sauce!

My husband had to pick me up off the floor and put me back on my chair at this point.

That takes us to Big Guy.

He was finally able to get a job (after six months of trying) and just received his first paycheck.

Way to go!

It's milestones like these that make it all worthwhile :)

Monday, May 4, 2009

My Child is Not Spoiled

We spent last evening with my parents.

I want to begin by saying I love them very much. They are wonderful parents in many ways, and I know I can attribute many of my successes to their guidance and teaching.

However, some of their views concerning discipline differ from mine.

I'm sure it's mostly a generational based difference. They were "old school". Meaning, their philosophy was mainly "children should be seen and not heard". A "good" child was quiet, one who did what they were told with no questions asked. Exercising one's right to say no was absolutely not tolerated. My father was very much an authoritarian figure in my life while growing up; it was his way, or the highway. You get the picture.

While they have relaxed somewhat over the years, anytime a grandchild shows some spunk, throws a tantrum, or doesn't automatically do what they are told, my parents classify them as "spoiled".

Of course, it's their parents' fault for not being able to "control" them.

This view does not work well when dealing with a child who has an autism spectrum disorder.

A child with autistic tendencies will NOT automatically do what they are told. Their brains function differently than than ours, and their behavior is often dictated by their state of regulation. Traditional discipline does not always work and is often not appropriate when they are disregulated.

Well Little Guy was in fine, disregulated form yesterday at my parents' house.

He wouldn't touch his dinner - it was absolutely delicious, but very threatening from a sensory point of view with its bright colors and mixed textures. Instead, he started screaming "NO,NO,NO!" and running around the house while the rest of us were trying to eat. When I picked up Little Guy to bring him back into the kitchen, he started screaming even louder and thrashed around violently in my arms.

After I finally got him calmed down enough to eat some yogurt (one of the few things I know he will eat), some of our cousins came over visit Grandma and Grandpa. Things got pretty noisy - and Little Guy is sensitive to loud sounds. His toleration level grew so low that every time his one-year-old cousin tried to approach him or even looked at him, Little Guy would start screaming.

Little Guy and I ended up spending the rest of the visit outside. He usually does fairly well outdoors; it seems to have a calming influence on him.

By the time we needed to go, he was regulated enough to go inside and say goodbye to my parents. On parting, my mother jokingly commented on what a little "pistol" I had on my hands.

That comment did not sit well with me. Little Guy is NOT a "pistol". He is NOT spoiled. He has neurological differences that make it more difficult for him to process and handle certain things.

This post is not meant to be a passive-aggressive means for me to handle this type of situation; I've talked with my mother before about Little Guy and the basis behind his perceived "misbehavior". I know she will become more understanding; it just takes time to redirect a lifetime of certain views and ways of thinking.

My hope is that this post will help at least one person to stop and reconsider next time they're about to make a snap judgement.

We are all guilty of this. In fact, I caught my husband doing it just the other day. He had spent the afternoon with an out-of-town friend who happened to have their seven-year-old son tagging along, and he was frustrated by the child's disruptive behavior. As he proceeded to describe what a little "terror" this boy was, I gently reminded him of our own child and how some people could view his behavior as "naughty" when it is actually being directed by his special needs. Who knows; this other child might have a similar diagnosis or something else that affected his behavior.

My husband grew quiet and said, "I didn't stop to think about that."

So next time you find yourself in that situation, I challenge you to "stop and think".

Because you never really know what the underlying circumstances might be.

Sunday, May 3, 2009

Hygiene and a Haircut

Most kids with Asperger's Syndrome are not known for being picky about their hygiene.

They forget to brush their teeth regularly.

Their clothes are chosen for comfort, not style.

Some refuse to bathe or shower.

Hair is often left uncombed and sometimes unwashed.

Some of the reasons for poor hygiene arise from sensory issues (some children have extra sensitive mouths or heads, some find certain clothes too itchy), others arise from the fact that these kids are oblivious to the social cues that dictate what's "acceptable".

We've struggled with some of these issues with our teenage son, Big Guy. Luckily he's a little bit of a germ freak, so he usually takes a daily shower. As for his choice of clothes, it is often a disaster but one that we've decided to address only on important occasions (job interview, church, etc.) Maybe he's just being a typical guy in this area :)

However, our main concern with Big Guy is his hair. He's been exercising his teenage rights by refusing to get a haircut....and it's been driving me crazy! It's not that I hold anything personal against long hair as long as it's well groomed. Which Big Guy's is definitely not. Half the time he forgets to wash it, sporting a greasy, stringy look. The other half, he does absolutely nothing with it or ends up pasting it to his head and slicking it all forward.

Arghhhh!

I've tried convincing Big Guy to cut it for several months now. The catch is, Big Guy absolutely cares NOTHING about what others think of him and has little incentive to please anyone due to his lack of desire to maintain social relationships. This has forced me to be extremely tricky about trying to change his mind.

I've been using a very logical approach by saying things like "Short hair is a lot easier to take care of" and "Summer's nearly here - short hair won't be nearly as hot". None of these tactics seemed to be working until we had an unexpected breakthrough the other evening.

Big Guy and I happened to be alone at the kitchen table when he suddenly announced, "My hair is bugging me; it keeps getting in my eyes."

This was a time when his sensory issues produced a positive result;I certainly knew how to fix his dilemma - a haircut! I jumped on it before Big Guy had a chance to change his mind. We contacted a friend who just passed her cosmetology boards, and she was kind enough to come to our house and give my son a haircut a short time later.

The end result?I love being able to see his neck again!

The leftovers:
Another month, and we might have been able to make a donation to "Locks of Love" ;)

Friday, May 1, 2009

Sensitive

No, this title doesn't describe how I feel about having two children with Asperger's.

It describes the easiest word I know that others can relate to when they first meet my autistic toddler, "Little Guy".

For example:

A couple of days ago, I decided to venture to the gym....with my toddler in tow. Many of you might be wondering what the big deal is with this scenario, but those who have experience with autistic children know that any type of change can be extremely disruptive for them. To avoid a potentially challenging situation, I normally leave Little Guy with a trusted neighbor or at home with an older sibling when I workout. Unfortunately, neither choice was available to me that day.

I'd tried taking him to the gym's daycare once before with disastrous results, but I felt desperate....or was it reckless? Anyway, as I looked into the childcare room and saw that there were relatively few children, I decided to chance it.

After I signed Little Guy in, I found a worker I could speak with. I introduced myself and pointed out my son.

The employee must have sensed I had something else to say, because her question was, "Do you have any concerns I need to know about?"

Hmmmm. Just a few. Should I begin first with his auditory sensitivity and how loud sounds can cause him to withdraw or have a complete meltdown? In case they served snacks, should I address his food aversions and consequent limited diet? That he has very fleeting eye contact? That large groups of kids intimidate him? Or that the slightest, unexpected touch from someone can be perceived as a potential threat?

I opted for a simplified version.

"Sometimes, when things grow too loud or there are a lot of kids around, he gets scared."

The worker's eyes lit up with understanding. "Oh, he's SENSITIVE. No problem, I'll keep an eye out for him." I had a very speedy workout, and Little Guy made it through a half hour of daycare.

Can one simple word sum up all of my child's needs?

Of course, the answer is no. However, I've decided that "sensitive" will suffice to help people better understand Little Guy's behavior when there just isn't time to explain all that his diagnosis entails, or if it isn't the appropriate place to disclose too much information.

Would I use this word to describe my other Aspie, "Big Guy"?

No. I would definitely use the word QUIRKY.

But that's an entirely different post :)