Sharing Our Story on BlogHer!

You may have read this post I wrote about my son and how he has embraced his autism. Well, now you can read it here because it is syndicated on BlogHer!

I'm so excited that I can share our story with others. There were definitely days that our story did not read the way it does today. There were days we didn't know if the ending would be a happy one. And it was during those days that I searched for others with similar stories to share because I needed to grasp the possibility of a happy ending. The stories seemed too few and far between because it is challenging to share difficult moments of a teenager's life.

I'm touched that my son allowed me to share his story and honored to have it syndicated on BlogHer.

Be sure to drop by there and join the conversation!  

A Tale of a Tail

Warning: This post contains graphic content.

Still here?

Don't say I didn't tell you.

The Boy went bike riding with his girlfriend yesterday on a local trail. He returned with a tale to tell that only one of our herd could possibly tell. These things don't really happen in normal families, do they?

I'm so disturbed by this.

According to The Boy, an unreasonably bold squirrel charged onto the path and began to play a serious game of chicken.

He swerved, but couldn't miss the little critter. He bounced and rolled several feet into the woods and the squirrel...

Well, his tale (tail?) was not such a happy one.

Yes, that is what you think it is. A piece of tail. 

At least The Boy had his girlfriend to comfort him. That poor squirrel had to nurse his wounds all by himself.  

I'm just so incredibly thankful that he didn't bring the tail home. 

Embracing Autism

Once upon a time...

...into the world, a bouncing, baby boy arrived. He was a chunk of cute at 9 lbs. 12 oz. His Apgar scores were perfect. He was the perfect picture of a healthy baby.

And then...

...then the developmental milestones began to lag. We hoped day by day that our bouncing baby boy would bounce up on his knees and learn to crawl, but it was not to be. Instead, he drug his little body along the carpet by one elbow. It was a unique method of movement, but not out of the range of normal according to our Parents As Teachers educator.

We waited anxiously to play pat-a-cake and interactive games but The Boy was not interested.  That was not quite out of the range of normal, according to the pediatrician.

Our precious boy could eat! Oh, could he eat. He could put away some Gerber. In fact, I've never seen so many Gerber baby food jars. I don't think we went through that many baby food jars with all of our other four kids combined. He just would not transition to table food. That should have been a red flag, but it was not really out of the range of normal.

He was a regular little Houdini. There was not a child-proofing device created that he couldn't untangle before your eyes faster than you could get it installed.

We had reached a point where other little ones were learning to talk, but not The Boy. He grunted. He pointed. He uttered two-word chunks of sound like "too-too nain" for choo-choo train. But talk, he did not. This, was a little outside the range of normal. At age three, The Boy entered a preschool for children with special needs and we worked with the school district to develop what would be an ongoing and constantly evolving IEP. The first support for the IEP was speech and language.

The Boy on the preschool playground

In kindergarten, The Boy was sure he was a Super Boy. He had good logic for this. Super Boys, you see, were going to come to the earth when all of the people became extinct. The Boy had accidentally arrived early. The people would become extinct just as the dinosaurs had before them and then all of the other Super Boys would join him and he wouldn't be alone. The Boy's teachers did not feel this was at all within the range of normal. Looking back, what The Boy was trying to tell us in his own way, was that he didn't fit in here with all of these neurotypical humans. He knew that he was different.

One teacher told us The Boy was retarded and recommended the school district administer an IQ test and evaluate him for special services. He stunned the person who administered the exam and she reported that he likely had a genius-level IQ, if only he'd been willing to cooperate with the test. She had asked him to spell his name, which he did. An hour later she asked him to recite the alphabet, which he did, minus all of the letters in his name. When she inquired about the missing letters he replied "I already told you the other letters in my name." The poor woman couldn't quite put her finger on it, but she assured us this child was 'different' but not retarded. Well...we knew that all along. 

Second grade rolled around and The Boy could talk just like any other second grader but he had struggled to learn to read so the IEP evolved from supports for speech and language to supports for reading. Less than a year later he was reading well beyond grade level. 

By fourth grade his state-wide math scores were phenomenal and his reading scores were pretty impressive too, but he had not picked up many of the typical skills that boys his age had long-since mastered. He was a walking encyclopedia of dinosaur facts, but he didn't ride a bike or tie his own shoes. He couldn't stand to get wet and would often stuff toilet paper under his clothing if he got a drop of water on himself. 

Life with The Boy was different. 

It was about this time that a psychiatrist put a name on different. The Boy, he said, had Asperger's Syndrome. It fit and we were excited. We finally had a definition of different.  There was an explanation for being just at the edge of within the normal range. And, it explained why The Boy felt like he was on the wrong planet. It is a feeling shared by many who are on the Autism spectrum. 

Then this thing happened. Puberty. Suddenly, we went from different to we're never going to survive the teen years!

Middle school brought its own nightmares. The easy routine of elementary school was gone forever and there were multiple class periods and teachers to adjust to. There were crowds of kids in the halls, The smells, sights, and sounds were overwhelming. And the whole mess mixed with the hormones of puberty made for a volatile combination. 

Many people with autism stim (short for self-stimulatory behavior) when they are overwhelmed. This leads to the typical pacing and hand-flapping often associated with autism. More rarely, some people with autism tend toward violent meltdowns. The Boy was of this flavor. When he is overwhelmed (when the sensory stimulation of the day has been too much) he enters a sort of fight-flight-or-freeze stage. This is not to say he doesn't stim. Trust me, we see (and hear) our fair share of stimming. 

Too often, the stress of a long day at school would push The Boy into a fight-flight-or-freeze moment. The teen years were filled with running away, threats of violence, and increasingly violent behavior at home. As a family, we engaged in many, many long hours of therapy and in-home case management to learn to reduce the triggers that would lead to a violent meltdown and to help The Boy learn to consciously choose to freeze (or step away) instead of fight or flee. 

We were on a first-name basis with our county's emergency personnel. They knew our home and situation well. Sometimes just a visit from an officer was enough to restore calm. Other times there were transports to the hospital. Some times we resorted to respite care outside the home for short periods of time. The in-home therapist was like part of the family, spending two to three nights a week at times in our home. The self-soothing behaviors that seemed to come so easily for some required a lot of practice for The Boy. 

Somewhere along the way The Boy had moved into high school and it was there that he really found his footing. The IEP had evolved to include supports for organizational skills and support blocks for each core class because school work was to happen at school and home time was for home stuff. Hence, no homework at home. All homework had to be completed at school during support blocks. The rigid thinking of autism was rearing its ugly head. 

In high school The Boy found his people- his Super Boys (and girls). He realized there were lots of people on the spectrum and he not only embraced his autism, he became a champion for it. He joined Anime Club, Environmental Club, the Gay-Straight Alliance, Computer Club, and Quidditch. He served on the Teen Advisory Board at the local library. He volunteered with the local animal shelter from time to time. He attended every school dance and served on the yearbook staff. This boy, who by the very definition of autism would have a  qualitative impairment in social interaction, was so social we could hardly keep up with his schedule. 

It was late in his high school years that a more formal evaluation changed his diagnosis to Autsim. The Boy has had to work really hard to learn to live with autism in a world that is predominantly neurotypical. He feels deeply the daily stress of living in a world that is too busy, too loud, too smelly, and too rooted in social skills that have no importance to him at all. Some days, this world is just too much, but he greets every day with new energy. He offers such profound insight to this world we live in. He finds beauty in nature,  creativity in art, and the best of human nature in the people around him. He is really quite amazing. 

So...

It's easy to understand why my heart is bursting with pride this week. 

Once upon a time there was a little boy who was diagnosed with autism. 

And he grew into an amazing young man. 

And he graduated. 

He closed one chapter of his life and he opened a new one. 

His autism is not cured. It is not conquered. And it will not cease to present new challenges as he enters college. 

He has EMBRACED his autism. 

And I could not be more proud of him. 

*Posted with permission from The Boy

It's All Coming Together!

Kapop. The sound I've heard for two days is KAPOP. 

Kapop. Kapop. Kapop. Kapop. It is the sound of a nail gun  and it is sweet music. It means the baseboards are being installed!

The Big Guy has been working like crazy to finish up the interior of the house this week. 

We have shelves in the linen closet! (Do not make fun of my sheet-folding skills. They are clean. They are folded. What more do you want?) 

The Big Guy even built this awesome little storage rack in the pantry to hold all of our stoneware. Now I don't have to hold my breath every time the kids try to get the rectangle stone off the bottom of the stack. 

I even got in on the action and created my first handmade item for our new-old home. The Big Guy salvaged an old pine board from a pallet that had been laying around post-construction and I painted our last name across it. I am so very proud of myself because I have no artistic talent whats-so-ever. Thankfully, I had excellent instructions to follow courtesy of Miss Mustard Seed. She has a fabulous tutorial on her site. You should go check it out and create your own antique-style signs because that is totally my thing now and I think everyone should join me in my new obsession    

You Can't Always Get What You Want

Mother's Day is the one day of the year when I expect my kids to do what I want to do, and smile about it. It's my day, so it's all about what I want, right? Exactly.

What I wanted this year was to be near water and take photos. Water nourishes my soul and I love to take photos of my kids' smiling faces. Again, my day- I get what I want.

So, The Big Guy and The Boy packed a picnic lunch and we drove out to the lake- the biggest body of water within umpteen states- and spent the day doing what I wanted to do.

We walked on the beach. 

We looked for shells.

Listened to the breeze.

Acted silly. 

And rode the horsies. Yeah. That happened. 

And then we took a nice group photo with everyone smiling, just like I wanted. 

No, I said with everybody smiling. 

Hey! Little girl in the blue! That means you, kiddo. 

Seriously?

You know what? 

Just...

Nevermind.  

It was still an absolutely wonderful Mother's Day. 

Gone, Gone, Gone

I know. I know. It's been forever since I've written an update about the house. It's just...well, you know...it's May. My grandmother would sing this little diddy to me when I was a child- "March, in like a lion, out like a lamb. April showers, bring May flowers." Whatevs. May in our part of the Midwest brought snow (yes, snow!) and as any parent of school-age children knows, May comes at you like a tornado.

We have a senior in the house this year. (A senior!) That means on top of all of the end-of-the-year talent shows, field days, memory book presentations, yearbook sales ("I need $21 by Friday, Mom!), band award presentations, orchestra award presentations, and field trips, we are adding senior parent socials, senior picnics, graduation, and a graduation party. C'mon, May! Bring it!

And then Little Bean shared her flu virus.

Yep.

What? You don't want to hear my excuses?

Fine.

Here is the most exciting thing to happen at the house recently:

The big construction dumpster that has been a permanent feature in our yard for the last 16 months is out of here!

Actually, there were 22 dumpsters in all and they are all...GONE, GONE, GONE!

And now the back yard is a big, ugly, un-landscaped, mud pit. Full of deck lumber. And other various oddities. Like the old shower pan from the master bath. And the metal shelving that doesn't fit in the basement now.  

  

A week after our fire, the insurance agent sat in our front yard and explained that we had up to $500 allowed in our policy for landscaping. I snickered. The fire was inside, not in the yard. What on earth did we need to fix in the yard? 

Oh, how naive I was. Flames and toxic smoke poured from our kitchen windows for several minutes. The trees above did not react well to all of that heat and smoke. The fire truck parked on the end of the sidewalk. Thin concrete is no match for a pumper truck. The backyard was dug up to place new electrical lines, though that was more a personal preference. The crews trenched around our home for reasons I cannot recall. And  the dumpsters were rolled across what remained of the sidewalk and parked on the lawn. 

We now have a sidewalk that looks like an earthquake hit, odd patches of grass here and there, mounds of dirt in the back yard, deep pits scattered about, damaged trees, and odd trenches where the hostas once grew. I look out over the yard and $500 seems kind of comical. But then, the bare yard does go well with our no-siding look.    

What is more comical, in a very painful way, is that every new person who enters our home says the same thing: "Doing some remodeling?" 

And I want to laugh like Tom Hanks in The Money Pit when the bathtub fell through the floor.