Tough Day and a Rose

Just about every day can be considered a tough day when you are a parent of teen boys with autism.  The criteria change daily of what is a tough day.

What may make a tough day today becomes easy to handle tomorrow.  What was easy yesterday becomes the challenge of today.

I know I can chose how to react, and sometimes my initial reaction is not so good.  Even Pollyanna got to the point of not wanting to be happy.

Taking a step back is so important to keep perspective and patience.  The proverbial line of taking time to smell the roses is true.  It’s those small moments that can make memories.  Good or bad memories.

So this morning I got up early and stopped at a coffee shop.  I can breath! I can relax. It’s short-lived, but it eases the turmoil  Funny how just a simple change of scene helps. 

I found my rose for today.

Time Out For Fun

Nick, Victorious Knight, Cam, and Ryan

Amidst the turmoil of autism, we need fun.  Yes, we need to keep a balance of sensory, safety, and dietary issues.  Consequently, we do a lot of research for any outing.  We found one that would stretch the boys.  Medieval Times!

Think of eating with no utensils.  Ok, maybe not too hard to endure for boys.

Picture a stadium setting with theatrical lighting and roaring crowds.  Now hear the clashing of metal upon metal during the jousting, and breathing of dirt, hay, and whatever remnants of the horses.  For typical kids, this could be a highlight event.  For teens with autism, it could be a sensory nightmare.

We knew the boys loved the movies of the Lord of the Rings.   They thoroughly enjoyed the sword-fighting and chivalry.  They admired the steadfast Aragorn, especially when the odds were against him.  Legolas and Gimli added further dimension of weaponry and defense.  So we drew similarities from the movies to what this Medieval Times would include.

We prepared them for the close contact of the arena seating.  We warned them of the unpredictable lights and sounds.  We gave them possible solutions as to how to deal with these.  They were gamed to go, and they looked forward to eating with their fingers!  (Years ago they couldn’t stand dirt or shaving cream on their fingers, so this would have been a concern back then.)

We arrived at the facililty, and the boys took it all in.  At times they had to sit and relax, but for the most part, they enjoyed all the sites and sounds of the retail area.  They even wore crowns/hats!  Then we were escorted into the actual arena.  Food and drink came and went.  The knights on horseback traversed right in front of us as we had front row seating.  Theatre lights blinded us occasionally.  Loud narratives welcomed us and introduced the games as they unfolded.

Throughout the entire evening, the boys were intent on what played out in front of them.  They cheered and waved our banner when our knight did well. They weren’t too keen when the horse snorted just a few feet from them.  They experienced the show without problems.  No complaint.  The boys were extremely loud when our knight won the jousting contest. 

Mike and I were relieved when they all concurred that we should return.  And soon!

Some Speech Concerns For Ryan

So what were my actual concerns about Ryan?  I had questions about the testing done by the speech pathologist.  What level vocabulary did she test?  Same with the comprehension passage.  Were these tests at Ryan’s grade level or peer level?  The speech pathologist didn’t answer.  Mental note to self to get answers at the IEP meeting.

Ryan had been working on comprehension and building vocabulary, which seems to have vastly improved.  He had been working conversation skills as well, but these seem lacking to me.  The pathologist pointed out that Ryan has enough conversation skills to get him through his classes.  His grades, overall, were very good.  She also told me that she was having to search for goals for Ryan.  It was SO OBVIOUS that Ryan didn’t need speech anymore.

Well–reality states otherwise.

I had tried to tell her that Ryan almost failed his math class due to his lack of communication, specifically not being able to ask for help.  She countered that kids tend to not do so well in higher levels of math.  I responded that Ryan was always in mainstream, regular math classes.   This became a verbal jousting match.

At the beginning of the school year Ryan, Mike, and I agreed to let Ryan be independent–to see if he could handle the responsibilities and communications by himself.  The lack of communication with his math teacher indicated that Ryan still needs help in initiating a conversation.  In this case, Ryan couldn’t ask for help because he didn’t understand where he was confused.  The result was placing Ryan in a resource (special ed) math class for this coming semester.  HIS LACK OF COMMUNICATION SKILLS IS HAMPERING his academic success.

On Monday Ryan and I were discussing classes for college.  We searched for writing classes as that seems to be his only interest to date.  He immediately changed the search criteria to include online classes only.  I asked why.  It took some time, but he finally said that he was scared to talk with people, that he was not ready to talk.  He felt he would make mistakes, and people wouldn’t understand him.  Ryan still NEEDS COMMUNICATION help.

I also thought about Ryan’s other classes.  Over half of his classes were resource classes.  If he didn’t require further speech services in school, shouldn’t that mean that he could handle mainstream classes as a precursor to handling life outside of school?  I had grave concerns that what testing Ryan may have done in a controlled environment may not be indicative of what is reality for Ryan.

Conclusion:  Ryan needs help in speech still.

Ryan Does Need Speech–Pragmatics

RING.  The phone goes off.  Inside of 30 seconds my day’s activity is dictated.  All else fades.  I didn’t take the call, but I listened to the message.  It is the high school psychologist, saying that we need to make a decision because she wants to write her report this week.  The IEP isn’t until next Tuesday.

I’m confused.  Decisions are suppose to be made by the IEP “team”.  I don’t like this being rammed down my throat.  Especially since Mike and I don’t agree with the decision to stop speech services for Ryan.

I discussed with Mike what points I should include when I speak to the speech pathologist. I decided to send an email for two reasons: I want to remain calm and to ensure I don’t miss any details.  Mike read the email and assured me it had the high points.  Then Mike went to work.  I hate doing this on my own; alas, Mama Bear kicks in.  My son’s potential is at stake.

Within ten minutes of sending it, I received a phone call on my cell. It was the speech pathologist. The timing was not good as I had an appointment.  She started of by saying, “Instead of reading your email, I saw that there were inaccuracies and we need to discuss this.”  She just made my day!  She’s NOT going to read the email.  She wants to talk NOW.

I am usually a cordial person, but I refuse to discuss this hastily.  I told her I’d call her back as soon as I could.  She insisted that we needed to make a decision asap.

I attended my meeting, and hurried home.  I called the district office to ask a simple question:  do I have to make this decision before the IEP.  IT was an unusual and odd for a school staff member to push for a decision BEFORE an IEP.

I spoke with the director of special ed department.  I asked about making this decision.  She told me how I could appropriately respond.  I also relayed my concerns about Ryan still needing speech.  After a quick discussion, I was armed with the correct vocabulary. I also verified that my “incorrect information” was, indeed, correct.  I then called the speech pathologist, and left a message about the correct information and what Ryan’s speech needs were with the key vocabulary of “pragmatics”.

The end result was ZING.  The speech pathologist acknowledged her error.  She read my email and “now understands”.  She also agreed with the “pragmatics” and will write her report with new goals.  SUCCESS.

The above actually transpired through a few phone calls and emails throughout the entire day.  I felt I kept hitting a brick wall with the speech pathologist. I needed to be persistent, patient, and grounded which required lots of prayer throughout the day.  Prayers were answered.

Now we await the IEP report.

Speech Pathologist: Ryan Doesn’t Need Services Anymore (but…)

Ryan

Last Monday morning, I received a call from the local high school speech pathologist.  She gave me wonderful news that she had tested Ryan on comprehension and vocabulary.  He tested very high.  She indicated to me that Ryan had mastered several goals, and this test verifies that Ryan does not need speech services at school.

Of course, that sounds great!  A parent of a special needs child awaits a life time to hear this.

She told me that she had talked with Ryan, and he agreed that he didn’t need services.  He was doing well in his classes.  He could talk when he wanted.  They were mutually happy with this decision.  She just needed me to agree.

I didn’t.

Following my gut instinct, I just don’t think Ryan is ready.  Then I started to think that maybe I’m being overprotective.  I had to take time to think this through.  Of course, I talked with Mike, and we debated if Ryan was ready to discontinue speech.  We finally decided NO.

First, Ryan doesn’t want to do more than necessary, unless it intrigues him.  So to get a chance to not work, that fine with him.  Typical of autism.

Second, Ryan still has communication issues.  Over Christmas break, he clearly demonstrated that he has a difficult time holding a conversation.  He used his catch phrases: “I don’t know” and “I don’t remember”.  He came up with a new one:  “I am not sure”.  Other than that, he didn’t talk much.

Third, Ryan told me that he didn’t like the speech/communication class he was in.  Ryan informed me that he doesn’t want to continue this class because there is a “person who talks too much which bothers me” and a person “who has an annoying laugh”.  Ryan has always had sensory issues with sound, and this could be a reason for lack of motivation in that class.

So now we need to explore what can the speech pathologist do to help Ryan if this class isn’t working.  We also need to convince the speech pathologist that Ryan needs to continue with services.  Not an easy feat!

Remnants of Autism: Language Still Weakness

Cameron!

I started home schooling Cam last week.  Part time.  He’s in honors classes in math and science, so I’m not pulling him out of those classes.  I am starting with a few classes, specifically English.

Why?  In the local junior high, the class is actually called Language Arts.  AND it’s a joke. Cameron was enrolled in ANOTHER English class to improve his LANGUAGE ARTS grade because Cameron doesn’t write well. Does that make sense?

 I emailed the teacher a few times to ask why she is not teaching grammar and writing.  Her answers were not direct.  I met with the teacher, and her responses were “commercials”.  They really seemed to be well rehearsed lines from the salesman who sold the district on the new Language Arts program that has been “tested throughout the nation and parents are thrilled with the subject matter.”  Well, not this parent. 

Although Cameron was “UN”diagnosed with autism last year, any language-based subject is a weakness for Cameron.  So far, he’s responding very well to home instruction, but he’s a typical pre-teen. He is spunky and spirited.  He is curious, always needing input.

Cameron admits to being lazy, but when focused, he blasts through a ton of info.  He’s quick to grasp the concepts.  I definitely have to stay 2-3 (or more) steps ahead.

Autism or not, this kid will challenge me more than I’ll challenge him!

Autism and Music: Part IV The Rewards

Mike and I playing Alpine Snowfall

One of my favorite parts of school was missing class.  In grade school and high school I played for the choir.  Whenever we had field trips or extra practices, I thoroughly enjoyed missing my regular classes–thanks to being able to play the piano.

I also liked getting paid.  When I was 11 or 12, I played for my first wedding and funeral.  The organists didn’t show up, and I volunteered (or was volunteered via my dad) to fill in.  I was surprised to get $25.  That was a lot of money back then.  It sure beat babysitting too!

Another great moment was when my oldest son, Mike, and I played a duet.  It was called Alpine Snowfall.  We played it many times that year–many recitals as well as for our own enjoyment.  Mike was 16.  I never thought I’d hear him ask me to practice WITH him.  We had a blast!

When Mike was 21, he thanked me for pushing him on the piano.  He is now 28 and owns his own piano.  He plays for his daughter.  That is success!

Nick before performing at a band concert

My other boys may not admit it, but they have experienced some great rewards due to their music and piano background.  ALL of them have played a second instrument.  Some of them play even a third or more.  Instruments include violin, trumpet, clarinet, sax, and several percussion instruments.

Stuart has pursued music to the collegiate level.  He earned a few scholarships.    Ryan has taught piano to several little kids over the summer.  Nick is in his sixth year in band in the school.  Cameron just finished two years of trumpet lessons.

There have been so many benefits of music and piano for my boys.  I love taking them to concerts.  Over the summer we enjoyed a concert tribute to Billy Joel and Elton John.  The boys were thoroughly entertained.  A concert we recently attended was by a male pianist/composer, but his music was very different than rock.  His music was classical.  All the boys liked it.  Nick insisted that I buy two CDs.  I asked, “Why?”  He simply replied, “I don’t want to share.”

I hope that my sons will continue to play throughout their lives.  There is no end to what music can do. 

Autism and Music: Another Door Opens – Part III

Nick age 2

Most people will not let their youngsters near that costly piece of furniture.  Not me.  My boys were encouraged to play my digital or grand piano at a very young age.  I wasn’t so keen on all of them playing at once, so I purchased other keyboards or bells.

At a young age, most children have a natural sense of rhythm and are drawn to music.  To keep my boys interested in playing the piano, I knew I had to keep music fun.  I thought of what I liked and enjoyed from my own teachers, and I incorporated those techniques in my own teaching method.  If I thought of something that I didn’t like from my former teachers, I didn’t use it with my own students, especially my own boys.

Michael age 14

The first thing I don’t do is insist that the lesson always be at the piano.  A typical lesson is 30 minutes, and sitting that long for some kids is painful.  When I see a student squirm, we get up.  Rhythm can be taught away from the keyboard, so we focus on rhythm.  I stomp the rhythm on the floor, and my student imitates.  Or I might get a drum to beat, and then offer the drum to my student to copy.  This is just one example of trying to keep the musical experience enjoyable.

Ryan age 3

This worked well for my boys too.  Movement for them was important.  I didn’t know my boys had autism when they were so young, but reflecting back, movement helped them integrate into our world.  Ryan and Cameron were spinners.  They could spin for hours if I let them.  I later learned this was a way for them to relieve stress.

Now the boys are older, and the protests abound.  “I’d rather finish my computer game,” anyone of them might say.  One time Ryan said he had to finish his chores before he could play the piano.  Well, not much has changed.  I thought of excuses too, but my parents simply said, “Piano, now.”

To minimize the conflict, I let the boys pick music that appeals to them.  Movie themes, by far, are the most requested.  Musical selections from Pirates of the Caribbean, Lord of the Rings, or any John Williams tune are the most sought after.  Of course, songs on the radio also inspire my sons.  However, the more advanced they get, the more traditional or classical the music pieces become.  Mozart and Beethoven are never far out of reach.

When they have learned a piece, they have such a sense of accomplishment.  The self discipline required balances out this “instant-gratification” culture of ours. 

Part IV:  the rewards.

Autism and Music: Another Door Opens – Part II

All five of my boys play the piano.  It has never been a question of IF but WHEN to start them.

I started teaching my oldest son, Michael, during the summer when he turned 4 years old.  It was a matter of keeping him occupied more than my thinking he was a musical prodigy.  Michael was a very active, curious boy, so I needed to give him “input”.  He liked playing the piano, and he learned quickly.  I was impressed.

By Christmas time he was playing Old Little Town of Bethlehem.  Or so I thought he could play it.  Within a few days he was in tears.  He whimpered out that he was very frustrated.  ??  I learned that I could not be Mom and Piano Teacher simultaneously.  I had kept pushing him, even after his lesson.  I had to stop.  I didn’t want him hating the piano as I did.

The first thing I did was wait to continue any lessons.  I waited until he started clunking on the keys again.  I decided, through an evolutionary process, that I couldn’t teach him as a regular student.  Michael had learned enough music that he could start a song.  He naturally asked me for help when he had something new.  I taught him that particular element and then left him alone.  This worked.

As the years rolled on, Michael played.  The younger brothers imitated Michael.  Stuart pestered me, “What am I going to play for the next recital?”  Thus started Stuart on the piano.  He learned songs just to play for recitals.  I always gave students the choice of music to play for recitals.  This worked incredibly well for Stuart.

The color-coded notes

Ryan, Nick, and Cam followed suit.  They all banged on the piano.  To save my grand piano,  I purchased a book that had a keyboard.  It was color coordinated, so that the notes matched the keys.  They learned Christmas carols in this book.  Although Ryan couldn’t talk, he did point.  I could teach him what he wanted to know.  This was critical for all the boys. They learned easily by “hands-on” and by “sight”.

Michael met music with much success.  In junior high he provided the music for several musical performances.  He taught, played at church, and worked a few piano events.  He developed a reputation for being incredibly musically inclined.  As music technology increased, so did Michael’s time on the piano.  I purchased a digital piano, and Michael ended up teaching me how to use all the tools.

The digital piano opened creative doors to Michael.  He started writing and recording his own arrangements to popular songs.  Again, Stuart followed suit.  The technology appealed them.  Although playing the piano at school wasn’t cool with male peers, the piano did impress the girls.  Consequently, my boys continued to play!

The recent years will be covered in Part III.