The Good, The Bad, and The Ugly

I really, really thought long and hard about this post.

Wanting to sugar coat it, making it seems less negative.

However, I've decided to be honest in this blog. Life with autism can be difficult, and it's important I document things the way they really are.

Whether it's the good, the bad, or the ugly.

Yesterday was a fiasco. A failure. A flop.

Yesterday was the primary program...and Little Guy handled it poorly.

Very poorly.

I thought I'd put the perfect plan into place, a foolproof way to make things easier for Little Guy. Unfortunately, yesterday proved that the best laid plans can go astray.

The primary kids were supposed to sit together in the back of the congregation with their teachers until it was time for them to perform. I knew Little Guy would have a hard time with this, so the plan was to keep him with us until the kids walked up to the front. At that point, we'd quietly have him join his class.

We'd invited Sis to come and watch her little brother; she told us she'd be there with her boyfriend, but they'd be late. Little Guy was expecting this and became increasingly worried as time passed and they failed to show up. Well, they arrived right before the children started walking up to the front, and Little Guy had a HUGE meltdown because he had planned on being able to sit with them before the program began. He was quite agitated, crying and yelling loudly while in the background the other kids were walking reverently to their places, humming to music. I was at the piano, trying to play the song while feeling powerless as Little Guy's drama unfolded for the whole ward to see. Sis finally ended up taking Little Guy out in the hall, where they stayed until he calmed down.

When he was finally ready to join his class, someone was sitting in his place. Little Guy ended up sitting in another spot, away from his teacher who understands his behavior - and next to his best friend, making it difficult for him to sit and listen. He spent most of his time going in and out of the chapel for drinks and made faces at the audience when he should have been singing. It wasn't until the last ten minutes that Little Guy was finally able to settle down and stop being a distraction.

I guess it was a nice program; I don't know because I was torn between trying to play the music and watching Little Guy's struggles, desperately wanting to help him. I do know that my experience was different than that of the other parents, who were watching with obvious pride as their children sang and participated as expected. When it was over, many of the parents had tears in their eyes, including myself. Not because I felt the spirit, but because at that moment, I acutely felt the difference that exists between Little Guy and "typical" children. For that tiny instant, I mourned the loss of experiences I realize we'll never have with our son. I glimpsed the rocky road that lies ahead of us, the hours and days and years of struggle required to help Little Guy adapt and succeed in a world that is often confusing and threatening for him.

And then, I dried my eyes. Put on my big girl panties. Stopped the self pity. After all, it is what it is - and our situation could definitely be much worse. I know my experience as a parent of an autistic child has forever changed me...for the better. I am much stronger than I thought I could ever be, more patient, and have developed greater understanding and compassion for those individuals society looks upon as "different".

Yes, my experience on Sunday was much different than those around me, but I wouldn't trade being the mother of my precious Little Guy for anything:

Crossing My Fingers

On Thursday, Middle Guy had his first high school swim meet:

It was important for me to be there for support, but I had one concern holding me back.

A 42 inch, 38 pound concern named "Little Guy".

Swim meets are hard for him to handle, as we found during our daughter's swimming career. The noise becomes amplified from the water, and the spectators are often crowded together. Little Guy is extremely sensitive to noise...and this type of atmosphere is very difficult for him.

The best alternative would be to leave him home, but that isn't always an option - and Little Guy needs to learn how to cope in the real world. This meet had fewer schools attending, and was held at a facility with an outdoor play area. I decided to chance it, crossing my fingers and hoping for the best.

Even with the playground, Little Guy was having a hard time regulating himself. He began getting anxious and upset over trivial things, and ended up crying half the time. It's obvious we're going to have to come up with some sort of strategy - or this will end up being a really long swimming season. I'm thinking maybe a pair of ear plugs or an i-pod filled with his favorite tunes might help him adjust to the noise level a little better.

Today, I find myself crossing my fingers yet again. Tomorrow is the children's program in church, and I'm not sure what to expect from Little Guy. A practice was held yesterday, and Little Guy struggled during it. Afterwards, I spoke with his Primary teacher and we came up with a few ideas. Needless to say, I'm really hoping they work!

Family Portrait

We had some new family pictures taken at the beginning of the month.

It's a good thing; over three years had passed since the last ones were done. My, how our kids have changed!

In the title of this post, I call it our family "portrait". The reason is I feel this image not only captures the visual sense of our family, but represents our life with autism, as well:

Notice how our family members have their arms wrapped around each other - except for Big Guy. He has an aversion to physical touch, which manifested itself when he was just a tiny baby. In fact, not only does Big Guy not want to put his arm around me, but it's also evident he's not quite sure what to do with his body. Big Guy is a bit clumsy and undcoordinated in real life and moves just a little differently than most everyone else.

My oldest is a handsome young man and looks very "clean cut" in this picture. However, I had to give him some very specific directions in order to achieve this. I reminded Big Guy to take a shower beforehand and wash his hair. I asked him to put gel in it and actually use a comb (he usually just lets it dry "however"). I told my son to shave, and asked him to wear nice clothes that fit and had no holes or stains. One would assume that at age twenty, Big Guy could figure these things out on his own. Unfortunately, personal hygiene is something many people with Asperger's Syndrome struggle with, due to the influenence it gets from social cues - which they are unable to interpret. Luckily, Big Guy was in a cooperative mood and followed my instructions....allowing for nicer-looking family picture.

And then there's Little Guy, hanging on to me for dear life. He is practically inseperable from me because I'm the one who brings balance, routine, and sense into his world. He doesn't do very well when I'm away for long, and even at home he is constantly needing to know where I'm at. It's exhausting having him nearly always at my side, but he is slowly learning techniques to help him cope with things without as much involvement from me. This is extremely important, as he enters public school next year.

For me, looking at our most recent picture will always evoke memories of the challenging, yet rewarding times we've had as parents of two sons with autism. It will be interesting to see how this "portrait" changes in the coming years!

Sharing Our Story

Sometimes, it's hard to share my sons' diagnosis with others.

I'm afraid of labeling them, afraid of giving people a reason to view them as "different". Afraid that others will only define them by the diagnosis, rather than their own, unique personalities.

However, I've had the opportunity to see the positive side of informing those around me about my sons' struggle with Asperger's Syndrome.

Just last week, I had two different individuals show their support and concern for Little Guy by consulting me about ways to best handle certain situations with him.

The first was a neighbor who had invited Little Guy to her son's birthday party. There were about 20 little boys invited, and this mother was worried about Little Guy and how he might react to the crowded, noisy environment. After speaking with this neighbor, I was able to warn Little Guy guy about what to expect at the party, and he was able to handle the situation much better because I was able to prepare him beforehand.

The next was the young man who is dating Sis. Our family went to a college function and told Little Guy that he would be there. Little Guy really likes this kid and was quite excited to spend time with him. Unfortunately, we arrived later than expected and caught Sis's friend just as he was leaving. This guy is familiar enough with our son to know how unexpected changes can upset him, and could tell that Little Guy was planning to spend much more time with him. He quietly explained to me that he needed to leave and asked what he could do to help ease the situation for Little Guy. We still experienced a few tears as this young man left, but I was able to help Little Guy rebound more quickly because we were informed and prepared for the unexpected departure.

These actions might have seemed trivial to these individuals, but they made a world of difference for me! I am so grateful for their thoughtfulness; it proved to me that choosing to share our story can increase support, awareness and acceptance for those struggling with autism.

The Love of a Brother

The addition of a special needs child to a family forever changes its dynamics.

There are many challenges to overcome. Daily life can be disrupted. A parent's time can be dictated by the demands of the handicapped child. These realities can be difficult - especially for siblings.

However, certain rewards are found. The virtue of patience develops when dealing with a developmentally delayed child. Interaction with these individuals fosters a greater acceptance for those who are "different". And the capacity for compassion increases as family members serve each other, as well as a growing appreciation for the "simple" things in life.

I feel my middle children have acquired many of these qualities through the interactions with their oldest and youngest brothers. However, I think this maturity is especially evident in Middle Guy, as he is at an age where the focus is usually on friends and fun. Don't get me wrong; Middle Guy enjoys having fun, but he's learned at an early age what his true priorities should be. There are also times when he is frustrated by his brothers' behavior...but for the most part, he is understanding and patient with them.

Last week, something amazing happened. Something reaffirming my belief that my middle son has been positively influenced by having two autistic brothers.

Little Guy had been having an "off" day. A day filled with many meltdowns and little tolerance for any change in schedule. A highlight of Little Guy's day is when Middle Guy comes home from school, and he was especially looking forward to his arrival on that particular day.

But when Middle Guy came home, there was something unexpected - three of his friends were with him.

I could read the emotions flitting across Little Guy's face as the realization hit him that his time with Middle Guy was about to be intruded upon. However, as Little Guy stood at the door and watched his brother talking with his friends on our porch, he tried to remedy the situation himself.

"Can I hang out with you guys?" Little Guy asked bravely, with a quiver in his voice.

Before Middle Guy could answer, one of his friends spoke up. "I don't think so," he said sarcastically. I could tell by his expression he didn't want an annoying younger brother added to their plans.

Little Guy was devastated. I moved in quickly for damage control....but Middle Guy beat me to it. He scooped up his younger brother, wiped the tears from his cheek, and said, "Of course you can, little buddy." He turned to his friends and asked them to wait for him in the garage, then spent an additional few minutes calming Little Guy down. Hand in hand, they walked into the garage, where Little Guy spent the next half hour hanging out with the "big kids".

I was so proud of Middle Guy at that moment. Proud of his maturity, proud of his loyalty. Perhaps my greatest satisfaction came from the realization that if a situation with Little Guy ever rose in my absence, he would have the love of a brother to see him through.

A Visit From Big Guy

Although we live in the same city as Big Guy, we seldom see him.

We might get a phone call every 10-14 days, or, if we're lucky, we'll get a visit once or maybe twice a month. Maintaining personal relationships just isn't a priority for those with Asperger's Sydrome, as evidenced by Big Guy's behavior. Even when he lived at home, our oldest son seldom interacted with the family. He would often seclude himself in his room or choose solitary activities to occupy his time.

On Monday evening, Big Guy stopped by for a visit.

When I say "visit", it's the loosest form of the word. His visits really don't consist of much "visiting". Rather, Big Guy usually plugs himself into a video game and finds a quiet corner to occupy while the rest of us interact with each other. There are two things our son is passionate about: reading and video games. I'm an avid reader myself, which has helped me to connect with Big Guy by having discussions about various authors and books. However, I didn't feel that was enough, so several years ago, I decided I would learn to play some of the video games my son loves. About once a year or so, I choose a game recommended by Big Guy and play it through. Some of these have been from the Pokemon series. Big Guy is able to use his expertise and knowledge to guide me through the game, which gives me another way to connect with him.

So, this is pretty much how Monday night went: Big Guy came and ate a quick bite of dinner with us, then plugged into his DS while Middle Guy and I finished a movie together. After the two younger boys went to bed, Big Guy hung around to help me through some levels in the latest Pokemon game.

You know, I've actually come to enjoy these sessions with Big Guy...and I have to admit the games have been fun, as well. It may not be a "typical" way to spend and evening with an adult child...but it works for us :)

When Reality Sets In

Little Guy has many strengths.

His vocabulary skills are impressive (he used the word recognized in context just this morning), he has above average intelligence, and he is physically coordinated and strong. If you were to base an opinion of Little Guy on looks alone, or even by a brief interaction with him, you would probably be blissfully ignorant of the struggles he faces.

In fact, sometimes there are hours - or even a day - when things are flowing well with Little Guy and I can almost forget what a challenge his diagnosis can be.

I use the word almost because something always happens to pull me back to reality.

I experienced two of these moments today. The first happened during church. Sundays are extremely difficult for Little Guy as he is expected to sit quietly in a room filled with people. It's an ongoing challenge, but we've developed strategies to help him cope. After the main meeting, our congregation breaks into classes for men, women, and kids. The children spend the first part singing and doing other activities together before breaking into smaller groups for lessons. The large group time is definitely the hardest for Little Guy to handle, as the room is very crowded and the noise level can grow loud. I am in attendance weekly as the pianist for singing time, and I have to admit it's often hard for me to watch Little Guy's antics; although sometimes, it's because I'm trying so hard not to laugh. Today the children were practicing music for a special program held for the adults in a couple of weeks. Little Guy usually has little interest in singing the songs, and I was worried about him knowing the words. So I took him aside before church and asked him if he could try his very best to sing. He promised he would.

Apparently, Little Guy has been listening to the songs. At least, enough to know each word that comes at the end of a phrase. He would SAY the word quite loudly off-key, and often just after the rest of children finished singing it. At one point, the chorister was encouraging the kids to sing louder. It must have become too loud for Little Guy because he SCREAMED the word before yelling, "Stop being so loud!" at the other children and running to me for comfort.

Poor kid.

Poor mom.

When it's time for the program, Little Guy will either be distracted, fidgety and not participating, or shouting the ending word of each phrase a half-second behind everyone else.

I'm not sure which would be best/worse!

The other moment came at dinner. Little Guy has sensory issues, which majorly affects his eating. One of the few ways I've discovered to help him get vegetables in his diet is sweet potato fries. Well, I was shopping the other day and bought sweet potato waffle fries. Same thing, right? Only in a different and - I assumed - fun shape.

Apparently, it is not the same thing for a child who has a high sensory input. First, it was the shape that bothered Little Guy. As he picked it up, the fry "felt" funny. Next, he put it to his nose and claimed the new fry even smelled different than the usual kind (after reading the package, I disovered it was seasoned). After much drama and discussion, Little Guy finally put a tiny bit in his mouth, which he immediately spit out. Since he was at least willing to try the food, I made him something different for dinner - a plain piece of bread with a thin layer of peanut butter which I knew he would eat.

Although my son is considered "high functioning", it is moments like these when the reality sets in concerning the differences between an autistic child and a neurotypical one. It can certainly be difficult at times, but as I see the progress Little Guy has already made, it makes me hopeful for a bright future :)

Roller Coaster Ride

Life with an autistic child is seldom straightforward.

Rather, it is like a giant roller coaster ride - full of breathtaking highs and disappointing lows.

I often experience this sensation regarding Little Guy...and yesterday was no exception.

We spent the morning at "Jumpin' Jacks", a building full of inflatable bounce houses. While Little Guy loves the thrill of bouncing and sliding, he can easily get over stimulated - especially if it grows crowded and noisy. We were there with Little Guy's best friend "T" and his family. "T" has some spectrum issues of his own and was enrolled at the county preschool with Little Guy. They get along VERY well; "T"'s quiet, passive nature is perfect for Little Guy to handle.

The building wasn't too crowded when we arrived, and things went well for the first half hour or so. I was chatting with "T"'s mom when I suddenly heard Little Guy screaming. I found him crying and yelling in another kid's face, accusing him of kicking. I led Little Guy to a quiet corner and got the full story; apparently this other child had been climbing up a very steep ladder in front of Little Guy and slipped, accidentally sliding into him. The catch to this scenario was that Little Guy has a hard time when people touch him when unexpectedly. He often cannot differentiate between accidental and purposeful touch and views accidental contact as threatening. Little Guy then grows quite upset and agitated, insisting the contact was done purposefully and demanding the other person apologize and be punished.

I got Little Guy settled, and off he went to bounce again. Things were okay for another half hour, and then it happened again. Only this time, it was a much younger child that Little Guy insisted had "hit" him. I grabbed Little Guy from behind in a bear hug, hoping he wouldn't haul off and retaliate by hitting back. The toddler's dad had witnessed the incident; apparently, the young boy had been bounced off-balance, causing him to flail and accidentally strike Little Guy. I assured the father it was fine - but I could tell by looking at the guy's face that he was wondering why my much older child was so upset over such a trivial thing.

After calming my son down yet again, I related my feelings to "T"'s mother. She told me she understood how difficult it is in those types of situations when others don't know your child's background. She wondered at what point do you try to explain your child's issues or not say anything and just let it go. This is something I've struggled with - finding the fine line between disclosure, and withholding information that is frankly no one else's business. I've finally come to the conclusion that if someone is going to interact with Little Guy on a regular basis (ie: church, school, etc.) it will definitely benefit him by sharing his diagnosis. As far as random meetings go, I usually bite my tongue and hope the other person isn't too quick to judge my son. One thing I've learned as a mother of two "Aspie" boys is that you never really know what the background story is. My philosophy is that one should never, ever make assumptions about a situation while practicing greater acceptance when it comes to others.

After this "low", we experienced and exciting "high". Little Guy has been terrified of a water feature at a local pool which has a huge bucket suspended over it. The bucket slowly fills up with water before emptying its contents all over the play equipment. The unpredictability of the bucket and giant roar the water makes as it falls was a HUGE issue for Little Guy; while he enjoyed the pool in general, he refused to go anywhere near the bucket.

I'm proud to report that Little Guy has finally conquered his fear! Sis took him swimming after his time at "Jumpin Jacks", where he climbed all over the play ground and even let the water dump on his head. It might not sound like much to celebrate, but this is wonderful progress for Little Guy.

Way to go, Little Guy - I look forward to many other future victories :)

Where Do I Begin??

Wow.

Nearly two years have passed since I last updated.

Where do I begin?!

If I tried documenting everything that's gone on, I'd be stuck in a vicious cycle of playing "catch-up". So for now, a brief synopsis might work best:

*Big Guy has moved out on his own. He lives with 3 other "apartment mates", but has a bedroom/bathroom of his own (a must for him). He decided not to go to college this semester (more on that later), and still works at the same local fast food place. He's finally been promoted to "shift manager".

Sis graduated from high school last May. She had a brilliant swimming career and was offered scholarships from a half dozen colleges across the country. However, she elected not to pursue collegiate swimming and decided instead to take a leadership scholarship at a local school. Sis was anxious to try living on her own and moved out in July. It's been a hard adjustment for Little Guy, as she was like a second mother to him. However, Sis comes once a week for a couple of hours to stay with him - this is one of Little Guy's favorite days of the week :)

Middle Guy is growing up quickly. I can't believe the change that's happened in the last year - he went from looking like an adorable little kid to a handsome young man! He is now my height (5'8") and will probably pass me in a couple of months. He's creative, athletic, and loves to perform. His friendly attitude and zest for life attracts others to him. Middle Guy has developed a greater understanding and patience for his brothers' behavior over the past year, and is a great friend and ally to Little Guy .

And finally...Little Guy:

I can't believe how much he's grown since my last post! Little Guy spent 18 months enrolled in the county preschool, at which point it was determined he was ready to move on to a different educational setting. We elected to enroll him in a Montessori preschool, and I became trained and hired as a Montessori teacher at that school in order to help with his transition process and behavioral issues. So far, it's worked fairly well.

As before, I'm sure the main focus of this blog will center around Little Guy, as most of our focus is spent on redirecting his behaviors - hoping that beginning at such a young age will help minimize them later on. Please stay tuned as I will post again soon!