Category: teen with autism

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

Ryan Is Driving On His Own!!

Ryan celebrating with Grandma

Five days ago Ryan took the drivers test and passed.  He has a drivers license. Unfortunately, I was not with him, but Ryan texted me immediately.  “I got it: my drivers license,” was his exact statement.

I called him, and I asked how it felt, “Good.”   I could hear him smiling.  Rare.  Ryan was genuinely happy.  I was happy too.  It’s been a long haul for him to arrive at this point.

Eighteen months ago, Ryan didn’t want to drive. He didn’t want the responsibility.  Ryan was quite content to let us drive him around.  Not a lot of ambition.  That doesn’t sit well, especially when Ryan wants to be independent.  I never understood that concept:  he wants to be independent, but he doesn’t want the responsibility.

Mike and I simply stated that if Ryan wanted to be independent, he needed to pursue skills that will make him independent.  Mastering some sort of transportation was a must–be it public or private transportation didn’t matter.  He needed to be able to get to places on his own, especially if he wanted a job.

So Ryan had taken the drivers ed course at high school.  He “drove” the simulators, but just wasn’t ready.  We didn’t push for a few years. However, when he graduated from high school, we pushed a little bit.  Thanks to my parents, Ryan earned his drivers permit last summer.  And ding–Ryan suddenly liked driving.

Now he can drive without me.  Yea.  He has a smile on his face. Constantly.  He is very happy with this new-found independence.  He even agreed that the responsibility is worth it!

Money, Money, Money

Last Monday, I spent the morning with Nick at our local coffee shop.  It’s one of the few places where the employees know Nick by name, and he feels very much at home.  (Not to mention, coffee is gluten free.)  Nick can relax and chill. As a consequence, I never know what surprises lurk here!

Today was no exception.  Nick surprised me with his understanding of abstract concepts of money, and he totally perplexed me with his lack of understanding of money.

First, the cerebral concept:  he has to pay for his own coffee.  Well, he doesn’t have a job.  Yet.  With his school load and extra curricular activities, he has no time for a job.  My husband and I want him focusing on anything related to schooling. So he surprised me with his comment, “I can’t waste my money on coffee like I did last year.  I like coffee.  I need a job, Mom.”

Quite simple and straightforward. Typical for a teen with autism.

How does a mom explain to her son with autism that there are only 24 hours in a day, and he is already using them all?  I used a diagram to illustrate his activities and the lack of hours for a job. That didn’t stop Nick.  He wants to earn his keep–a concept my husband and I have taught all our kids.  My only solution was to offer Nick jobs around the house for some extra cash.  AND he could get a job over the summer.  “Great!!” he exclaimed.  I am THRILLED that Nick understands the concept of money–earning it, spending it, saving it.

Then came Nick’s lack of understanding.  He used a debit card at the coffee shop for the first time.  He swiped his card and got his coffee, “Cool!”  He took his receipt, and I logged on to the bank website so he could see the transaction.  He looked at me with confusion.  Money was missing from his account.

When we opened his bank account, the banker explained the debit card.  Nick said he understood. Obviously, he didn’t.  I showed the amount to be debited from his checking account via his receipt, and he looked at me with total dismay?  “I have to pay my debit card?” he inquired.

I shook my head yes.  “The bank will give this money to the coffee shop.”  Nick didn’t like the idea of his money going out of his account.  He understood cash, but this electronic thing was confusing him.  He responded, “You’ll teach me this money stuff?”

I reassured him I would.

I couldn’t believe the complexity of monetary ideas:  one moment I was surprised that Nick understood the idea of earning his own money to spend, yet the next moment I was astonished that Nick didn’t understand the idea of a debit card.

Knowing Nick, he’ll learn this lesson quickly!!

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it’s been to get them there.

We found out last February that the marching band at Nick’s high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick’s high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that “the IEP would be taken into consideration when choosing chaperones”.  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick’s case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn’t just call us, and we’d be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick’s behalf when the selections of chaperones were picked.  When the list was publicized, Mike’s name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there’s a lot of “behind the scenes” that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice…

I think the effort is worth it.  Nick’s smile says it all!

Ryan Turns 19

Ryan’s favorite ice cream

Today is Ryan’s birthday.  He’s been counting down the days for over two weeks.  I think he is more excited about turning 19 than he was 18.  Wonder why?

Could be many reasons!

I think there is less stress in Ryan’s life.  He graduated last May, so he’s not in school full time.  He starts his college classes tomorrow.  He’s only taking a few classes, and he’s chosen them.  Unlike high school, where there were standards and requirements, Ryan is taking college slowly.  As of now, Ryan is enrolled in 3 college classes, but he’s taking one class at a time.

Ryan is in control of his time.  He continues to write his book.  He’s writing all day, every day.  He doesn’t have to deal with a lot of people, so less communication is required of him.

Ryan has less commitments, but he’s trying new things.  At his pace.  Ryan’s learning to drive.  He is exploring new communication technology.  He now has a computer, so this technology can open a new world of learning for him.

Ryan’s also accomplished a lot this year.  Besides graduating, Ryan spoke at a regional autism conference, played on a competitive team sport, and passed his drivers permit test. Those are a few highlights.

Of course, Mom and Dad still push Ryan in adult responsibilities as Ryan yearns for complete independence.  Ryan has grown and matured a lot this past year.  He seems to be getting comfortable in his own skin.  We are very proud of him.

Ryan doesn’t know what he’s going to pursue, career-wise.  Lots to think about there for any 19 year old, let alone a teenager with autism.  However, today, we’re celebrating.

Like all of us, Ryan is a work in progress!  Happy Birthday…

Autism and Interviews: Mindless Mess

A serious Ryan, after interview

So Ryan didn’t want to go to college, but he acknowledged that getting a job or writing to support himself was going to be difficult.

We opened the door to another thought.  No college.  What else could bring Ryan to his goal of independence?  A trade school?  An apprenticeship?  Again, Ryan had a perplexing issue to face.  Really, it was impossible.

Ryan has a difficult time relating to anything without a reference point.  To name an occupation, career, job, class, or anything is meaningless to Ryan.  Unless he is familiar with it.  So we spend hours trying to find examples for Ryan.  Research on the computer amounted to little success.

We kept coming back to classes.  Any class.  One class.  Just something that might spark an interest.  No degree or career in mind.  Just a class.

I took him online, and we visited a local college website.  I brought up writing classes.  Ryan narrowed the search to include online classes only.  I asked why.  He responded that he didn’t want to talk.  He wasn’t ready to talk.

New issue.  Well, not so new.  We know Ryan doesn’t like to talk with people.  However, HE expressed that he’s not ready for college.  That was a BIG step.

We found an online beginning writing class.  SUCCESS.

Then he was interested in the scholarship, and the deadline was a few weeks away.

Autism and Interviews: Mindblowing!

Ryan with a smirk, after interview
So what did we do to get Ryan to the scholarship interview?  Twas a long process just to get to this point.  Many, many steps.
First step was convincing Ryan to apply.  Ryan has expressed that he doesn’t want to go to college.  Ryan wants to write his book.  I am fine with him writing his book.  I really like the fact that he can write.  It is an outlet for him–to create and express himself.  For a teen with autism, any outlet for creativity and expression is awesome!
Back to college.  I really don’t care if Ryan goes to college.  I want him to have a productive, happy, full life, doing what he wishes to do.  Ryan wishes to be independent.  How is that going to happen?  How is HE going to make it happen?  In Ryan’s words, “I’m not sure.”
Two years ago, Mike and I started to encourage Ryan to think about potential careers.  After months, we concluded that was too big a step.  We then narrowed the thought to jobs.  What type of job would Ryan want to do?  That still was too foreign to Ryan.  We fine-tuned our focus to classes.  What classes would Ryan enjoy?
None of these worked, ultimately.
We changed the approach.  We told Ryan he could not stay at our house and “be independent”.  We asked Ryan to define what independent meant to him.  Eventually, he said, “Do everything on my own.”  Steps.  We then wrote down what he meant by everything.  Finally, we hit money.  He wants to be financially free from us.  How?  He wants to write. 
Could he support himself with writing?  How much money would he need?  We required him to write a budget, which needed to include rent, utilities, and food.  Then there was transportation, entertainment, clothes, haircuts, etc.  Ryan realized he would need a lot of money, more specifically, a steady income.
More steps.
We then expanded a little.  Would writing produce that income?  How many professional writers lived entirely on their income from their written works?  Ryan could name one.  After research, he found that she didn’t live on her writings until she produced a book about a kid named Harry Potter.  That took a few years for her to acquire that income.
More steps to follow.

Nicholas: A Good Week

This week has been a good week. What a blessing! Makes me wonder if I was taking for granted all the other “good weeks” that we had…

A friend asked if “one of the boys has had a set back. I thought they were all doing so well.” Yes, the boys were all doing well. I am not sure why Nick is regressing, or seems to be regressing.

One suspicion I have is teenage turmoil. How hard is it for a teen without autism to maneuver high school and puberty? I recall tough times. I have seen Nick’s three older brothers, with and without autism, have tremendous struggles in transitions, friendships, and work loads.

Nick is a teen with autism. The autism effects his expressive and receptive language. Nick thinks in pictures, so his brain is firing like crazy to interpret speech and sound. Most kids his age may not have the patience to give Nick time to process what they say.

I brought up this issue at Nick’s IEP meeting about two weeks ago. His speech pathologist recommends a program called Best Buddies. The psychologist and case manager said that they’d sign him up. I haven’t heard anything so far, so tomorrow, Monday, I’ll be calling the school to see what the status is. In this program NT (neuro-typical) kids signs up to befriend special needs kids, and they meet the kids for several social outings.

I am hopeful that the Best Buddies will help Nick through this time. However, this is one small piece that may fit the “puzzle” of autism.

I still am trying to figure out if there are any other issues at hand, but here’s to Nick’s perseverance!

photo credit:http://www.flickr.com/photos/sean-b/

Sleuthing Autism: What’s The Problem?

“My son is having a much easier time talking today that he has had all week. I’m still trying to figure out how an autistic mind works. Some days, he can barely get a sentence out. Other days, he can talk with just a little effort. That was my post yesterday on Facebook. Last Saturday I posted, “My son had a good day. Yea.”

For the last four weeks Nick has been having a very difficult time with life. A few times he’s been very close to tears. Other times, he has been downright angry. One Wednesday, he stammered, “I can barely talk.” That was all he could say.
I am quite baffled. I have no answers for my son. This is the child who talked for an hour once to my oldest son’s friend back in the Fall.
Nick is also a very resilient child. He has a quiet but happy spirit. He is not one to hold a grudge or be in a slump for long. Lately, he seems to be obsessing more frequently. Again, something he usually does not do too often.
The most confusing part is that his behavior and mood swing are not consistent. As parents, we are encouraging Nick to keep talking and keep hope.
I feel stupid, asking a teen with autism to talk. I’m asking him to do the one thing that is hardest for anyone with autism to do: socialize and talk. Yea, no problem… NOT.
So I’m tracking the ups and downs of Nick, trying to find if there is a reason. Could he be staying on the gluten free diet? Is he not taking his supplements? Are other kids contributing to the problem? Is this just a typical stage in a teen’s life?
I wish I could hire Sherlock Holmes!