Autism: Surviving and Thriving

Eleven years ago my youngest 3 boys were diagnosed with autism within a 6 month span. Devastation and grieving followed. Doctors gave me little or no hope, but they didn't know me very well. I refused to believe that my boys were doomed.

My boys are now young men, adults with autism. They are thriving, but every day presents its turmoil and challenges.

My family: husband Mike, sons Ryan 20 yr, Nicholas 18 yr, and Cameron 14 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 30 yr and Stuart 22 yr, moved out of the house.

Friday, October 17, 2014

Nick Thriving with Music

Nick (middle) 
Nick loves music.  Seeing him play in marching band is more than a goal achieved.  He is happy.  That may sound like a simple statement, but it signifies a culmination of Nick’s intense therapies to live and achieve with the disability of autism.

As a toddler, he'd climb onto the piano bench and bang on the piano keys.  He started piano lessons at about the age of 8.  He did not necessarily pick up the concepts easily, but he practiced incessantly.
Nick about age 2

In fifth grade Nick decided to join band in school.  He chose to play the bells.  The classmates in his band class were extremely supportive and helped Nick learn the music.  The elementary school band teacher had ADD, so this teacher could relate to Nick--keeping instruction clear and concise.  Nick thrived.

In seventh grade his band teacher introduced Nick to other percussion instruments. It was a slow process to get him comfortable, but he persevered.  Again, his classmates helped Nick, if needed.

Nick continued band in high school.  His sophomore year, he joined the rhythm theatre band in addition to the regular band class.  The rhythm theatre band practices were after school, so this really illustrated how much Nick liked music--he was there because he wanted to be, not just to fill a class period.

In his junior year Nick added the marching band to his class schedule.  This class started an hour before the regular school day.  Nick, who was never a morning person, awoke at 5 am daily. 

Few of his classmates from elementary have continued to take band, but they have been the nucleus for meeting new friends via band.  I understand the marching band members become really good friends because they spend so much time practicing together.  However, I have never seen such acceptance and camaraderie that includes a student with autism.  This bond goes beyond the school walls.  We rarely can go to a store without Nick knowing someone.  Either he or the other person will stop, high-five, and chat. 

Now, Nick is a senior, and he continues to play in these bands. He wishes to pursue more piano lessons and wants to play in a band after high school.  Nick sums it up, "Music is my life."

top photo credit:Shaylen Sparrow

Tuesday, September 30, 2014

The Job: Is This My Son Ryan?

Ryan guiding a new student
Last week Ryan moved up from intern to employee. What a change in him!!

When Ryan started these photo shop classes last year, he needed time to absorb the environment, people, schedule, let alone the content--typical of any young adult with autism.  I had hoped, that given time, Ryan would become comfortable and adapt.  What has occurred is beyond any expectation. 

When Ryan Johnson first came to RMG Imaging Artists, he spoke little and kept himself isolated from others, preferring to spend his breaks and conversational efforts completely immersed in the world of the novels he writes on his laptop. However, something happened over the past year; something akin to the astonishing metamorphosis of a caterpillar into a butterfly. Conversation has become a normal part of Ryan's day, smiles spread across his face regularly, and he exhibits great pride in the work he performs. He has applied himself to achieve, and in so doing, he has earned a sense of accomplishment, self-assurance, and position of respect among his peers. Ryan now talks to staff and his fellow artists with confidence—an extraordinary and heartwarming transformation! 
-Denise Gary, RMG Imaging Artists LLC

This is beyond any hope I've had.  My eyes get misty...

Photo Credit:  RMG Imaging Artists 

Friday, September 19, 2014

Ryan Has A Job (but he didn't tell us)

This conversation is quite indicative of Ryan.  He likes to keep to himself, or as we call it, he likes to stay in his world.  The owner of the photo shop classes and I have had several, small conversations on the side.  In this case, I knew a job for Ryan was very likely, but I didn't know when.  It is imperative that parents of autistic adults stay in close contact with people who are around their young, autistic adult.

Wednesday evening:

Mom:  How was class?
Ryan;  Fine.

Mom waits for elaboration, but knows none will come.

Thursday morning:

Mom:  How was class?
Ryan:  You asked me that yesterday.
Mom:  Yes, but all you said was fine. So how was class?
Ryan:  Fine.
Mom:  Did you do as well as you did last time?
Ryan:  Yes.
Mom:  Did they say anything about getting hired officially?
Ryan:  Yes.
Mom:  So??

Ryan says nothing.

Mom:  So you have a job?
Ryan:  Yes.

Mom's eyes widen, and Dad turns around to face Ryan.

Dad:  Why didn't you say this yesterday?
Ryan:  Um.
Mom:  Now you see why I asked you again?  You didn't tell us this. This is great news!
Dad:  Yeah, this is a big deal.
Ryan:  Yeah (trying not to smile).
Mom:  SMILE.
Ryan:  Ok (with a silly grin).

We went out to dinner to celebrate to illustrate that it is important to share news with us.  How else could we mark the occasion??


Sunday, September 7, 2014

Grandparents Smoochin' (Tis Grandparents Day)

Last August my parents celebrated their 55th anniversary.  They have lived their wedding vows--good-bad, sickness-health, rich-poor, etc. They have four kids, several grand kids, and a couple of great grand kids. They have endured our disappointments and rejoiced at our accomplishments.

I can't speak for them, but I think love has something to do with their longevity as a couple.  I have witness them draw strength from each other as well as drive each other crazy.  They sacrifice ceaselessly.

They have set the example for me and how I parent special needs kids. The endless issues and battles my husband and I face seem insurmountable.  However, when I see how my parents have survived turmoil and chaos, they inspire me to continue.  Our problems are very different, but the key to surviving and thriving is the same:  love.

Love endures all.

Thanks, Gma and Gpa!!

Sunday, August 24, 2014

Three Teenagers--And Then There Were Two!

Nick, Cam, Ryan
Today is the last day I will have three teenagers in my home.  Tomorrow Ryan turns 20.  Talk about him growing up within the blink of the eye, but then I think of all the tears and joys along the way of his 20 years.  Quite a life he has lived so far.

For the first couple of years of his life, Ryan was fearless.  He knew no boundaries.  It was scary.  He met all his milestones early, such as walking when he was nine months.  As he developed sensory issues, he lost communication skills.  We went to doctors and specialists for several years.  He was diagnosed with several ABCs, 123s, meaning PDD-NOS, ADD, OCD, and speech delay.  Ultimately he was seven when he was diagnosed with autism.  His brothers were diagnosed the same year with autism too.

Our world was rocked.  We brought in lots of therapists to work with them.  None of the boys liked strangers.  Until Meredith.  The boys took to her.  Ryan was the fastest to respond because he liked her baby.  Meredith and Baby brought Ryan out of his world.  We loved her immediately.  She also worked well with Nick and Cam, but most people had the hardest time establishing a rapport with Ryan.  Unfortunately, Meredith moved, and Ryan had to adapt.  That didn't work so well, but that relationship showed us that Ryan could connect with people outside the family. That was 12 years ago.

Ryan showing Dad his photos
Ryan has had many therapists since, and he has moved beyond what any doctors thought possible.  He continues to grow beyond our initial hopes after the diagnosis.  In fact, he finding his way in the world slower than his peers, but he is succeeding.  For example, we have been surprised by his maturity in the last year, especially as illustrated in his photo shop class.  He was quiet and shy, and now he is assisting beginners.

I can't wait to see what this decade will bring Ryan!

Second photo credit:  RMG Imaging Artists

Friday, August 22, 2014

No Job? No College? Why?

Ryan assisting new student
School is back in session for my youngest three boys. The younger two are in high school, and Ryan is going to which college?  He isn't sure how to answer. Then they ask, "Well, where do you work?" Awkward silence follows.

In the typical world, a person graduates from high school, and then he attends college or gets a job. Friends and family are curious and wish to share in what's going on, and they ask, "What college...?" In the life of an adult with autism, that can be a frustrating conversation.

Why?  The set expectation does not apply to the autistic world.

I have listened to these conversations from a distance. Ryan usually does muster enough information to answer questions.  Nonetheless, the other person is still perplexed because Ryan isn't following the "expected" format. He's not going to college.  He's not working.  However, he's on the road to both.

We have developed a description of what Ryan's status is.  Ryan attends a private trade school.  He is learning skills to be an imaging artist.  Currently, he is interning to assist new students.  This can lead to a paid position as a PIT (photoshop imaging tech) crew member.

Life is hard enough when it doesn't fit into a preconceived idea.  It's even more difficult to try to explain the "what I'm doing" let alone the "why I'm doing" this.  Now add the lack of communication that is symptomatic of autism.  Double whammy!  Yet, Ryan perseveres!

Photo credit: RMG Imaging Artists

Sunday, August 10, 2014

Congratulations, Cameron

Although the new school year has started, it's never too late to celebrate achievements.  We hosted a graduation party for Cameron back in May, as he graduated from eighth grade.  Sadly, the local school district cancelled any formal ceremony due to budget cuts.  Nonetheless, we commemorated the moment, complete with mock diploma and hat.  Cameron was a good sport.  He certainly appreciated the attention too!

These milestones may seem like normal steps for most people.  For a mom of teens with autism, these occasions are victories of unseen battles.  Years ago, I would never have believed my youngest would be at this level of cognition and ability.

As we gathered to congratulate Cameron, I wanted to acknowledge that this moment was not just due to his ability.  Many shared in it.  I took a few moments to take all present at the party back to 13 years prior.  I reminded everyone that Cameron has major setbacks as a toddler.  He lost his speech and movement.  He had to relearn how to walk and talk.  He became self abusive, banging his head incessantly.  Many therapists and family members helped Cameron to develop physically, mentally, and emotionally.

I never want Cameron to take for granted that these moments of success are only a result of his effort.  While he earns most of the credit, he can't forget those earlier moments.  In fact, he can show how someone can overcome/recover from autism.

Now he moved onto high school.  There's always a new step or goal, much like his life has been with autism.  Once a goal is achieved, it is quickly replaced by a new goal.  Such is life.  The difference now is he can pick what his goals are, not us parents.  His class load at the high school is tough.  His counselors didn't recommend the load, but they don't know Cameron very well.  When he WANTS to do something, he will do it.  It may take several tries, but he'll figure it out.

So onto the next step, Cameron goes!