Adding Some Pumpkin Spice to Life

Last Saturday I took my granddaughter to a "pumpkin event."  It was not a pumpkin patch; we went to a garden which featured pumpkins as the characters in scenes.  Some faces were carved intricately; some just had arms and legs added.  However, all made theatrical puppets look like yesterday's headliners.

We marveled at the creativity of the artists.  We could not imagine how much time or what tools were used, but we certainly enjoyed their efforts.  Each pumpkin was unique.  Jack O' Lanterns just evolved this year! 

Pumpkins having some water fun

New Occupational Therapist Was Ryan's Classmate

Ryan and Nick have a new occupational therapist.  She is on the young side, but she has great ideas about how to merge the outside world and the autistic world.  Her name is Alex, and she has been employed for several weeks now.  I am thrilled that the boys are now working with a peer.  They need to be able to relate to their peers at school and at work.

Peers.  More to that word... after talking with Alex about the boys' background and goals, we discussed schools.  My boys have attended several schools within the school district, but when I mentioned one, Alex lit up and said she went there for fifth and sixth grade.  Alex and Ryan are the same age.  Ryan quickly disappeared and returned with a school yearbook.  Alex recognized it, "That's my yearbook."

They were classmates.

Ryan found his sixth grade picture, and Alex said, "I know you!  You were a little silly and quiet."  Alex then found her sixth grade picture, and Ryan could vaguely remember.

This was the first time I've ever heard what a fellow student thought of one of my sons at that time.  No one ever described Ryan as silly, but if she weren't aware that Ryan had autism, that is very understandable.  A mom always worries about how her sons fit in, especially a mom of special needs kids.

The rest of the session was remembering shared experiences and memories:  science camp where Mr. Adams proposed to Miss Nelson, sixth grade teachers, friends and classmates, etc.  Ryan talked a lot.  He smiled and even laughed a few times.  I could not believe the lively interaction between therapist and client.

Nick was two years behind Ryan, so Nick and Alex' paths did not cross much.  Nick does not remember her, but he smiled when I told him Alex went to the same elementary school.

What a turn of events!  The boys now will really be working with a peer, which is exactly what they need.  I am really looking forward to this new perspective for the boys' continued growth towards independence!

Autistic Kiddos Have Talents

We all have talents.  We just have to find them.

Life is relative.  What is easy for some is very difficult for others.  Math is a great example.  My two boys with autism love math.  It is very easy for them to grasp and compute.  They both took harder math classes in high school than I ever did in college.  Oh yeah, I did not take ANY math class in college because trigonometry in high school was enough for me.  I muddled through that class after endless hours of studying.  My sons breeze through those calculations without effort.  I wish I had their ability.

My boys roll their eyes at me, not understanding how I can’t grasp the simple concepts.

In contrast, I enjoy writing. It can be fun, even a welcomed challenge to me.  For my boys, writing is downright painful.  They’d rather do their Saturday chores than write.  They will even do MY chores to procrastinate that tedious task of putting words on paper.  Once they sit down to write, the dead would complain about my kids’ groans that permeate the air.  My sons equate writing to a medieval torture, and should be outlawed.  They wish they had my ability.

I roll my eyes at them, not understanding how they can’t grasp the simple concepts.

We are all gifted.  Sometimes, we spend too much time working on our weaknesses that we forget to capitalize on our strengths.  Find that talent, and let it flourish!

Ryan's New Internship: Communication Via Coffee

Imagine having to think of the word, "Hi," and then say it.  Imagine forcing yourself to smile to greet someone.  Imagine remembering to focus your eyes to meet another person's eyes.  Imagine processing all these actions simultaneously.  THEN, imagine preparing yourself to process what the other person will say or do.

For most of us, this is a simple process.  With autism, it is a check list:  how to greet someone!

Yesterday, Ryan started a 12 week internship at a coffee shop specifically designed to train adults with autism.  It is called Beneficial Beans.  Through this internship, Ryan will learn how to make sophisticated coffee drinks, but that is simply a means to teach him about communication, interaction, customer service, etc.  People skills.

Ryan can talk.  In fact, he can be quite articulate.  Other times, he can isolate himself in a crowd and be at peace in his own world.  Like most in the autism realm, connecting with people can be a challenge, let alone mentally exhausting.

My hope is that Ryan will be more at ease when conversing with other people.  That may sound simplistic, but with autism, no encounter with another person is easy.  Maybe, Ryan might even come to enjoy other people's company.

Imagine your son wanting to share his ideas, dreams, goals.  I can't wait to hear what Ryan thinks!  As of now, I can only imagine...

No More IEP Meetings!

Today Mike and I attended our last IEP meeting. Yippee!  I counted 47 IEP meetings, at least, since 1997.  Two of our younger four boys had varying disabilities, ranging from speech impairment to autism.  Both of them, Stuart and Cameron, have sufficiently progressed to function as neuro-typical kids!  The other two, Ryan and Nick, still have autism, but their progress is no less remarkable!

So what is an IEP?  Basically, it's a written contract in which educational goals are written for the individual with special needs.  Its focus is to educate the individual person, geared towards the issues and abilities of said person.  IEP stands for individual educational program.

These meetings can be stressful and grueling, or they can be uplifting and reassuring. HA.  They are usually grueling.

The participants are comprised of teachers, a psychologist, therapists, parents, and student, called the TEAM. Frequently, the school staff discuss the goals of the student before the meeting, though I don't think anyone would really admit to that.  When the meeting commences, the goals are already written.  If the parents agree with those goals, there is no problem.  If the parent disagrees, then PROBLEM.  It can become a battle or a downright WAR.

Sometimes our meetings would last three hours, and we'd have to postpone any conclusion.  Those were horrific.  Our child's needs were not being addressed appropriately, and as parents, we had to ensure they were.

And the paperwork!  I have four binders full.

Over the years, I learned that certain vocabulary terms were necessary to get what my child needed.  Also, what one school could do was different from what another school could do, even in the same district.  Some special ed classes were offered only at select schools.  The staff, depending how dedicated to the student, may or may not want to implement other goals.

Quite often, I felt like an intruder rather than a team member.  I always had someone else accompany if possible.  Whether it was my husband or father, having an advocate helped streamline the meeting.

Not all meetings were terrible.  Some could be pleasant, especially if I knew the staff.  Getting to know the principal, secretary, and teachers helped to get my children what they needed.  I volunteered a lot.  That made a huge difference, and my boys prospered.

So with this last IEP, all my boys are moving toward adulthood.  As they transition into the "real" world, my life also adjusts.  There are no contracts with employers or colleges.  I am concerned how my boys will progress, but as always, it's one day at a time.  Seeing how they have succeeded thus far, I am confident they will find their way, and I will find mine.

GOOD BYE, IEPs!

Cameron's Capers

My youngest has sprouted in the blink of an eye.  It seems as if it were yesterday when we were teaching him how to walk and talk--for the second time.

Cameron experienced a traumatic reaction to the MMR shot, rendering him having to relearn everything.  He also had to overcome issues that did not exist previously.  He became self abusive, and well, there's quite a history, of which I have written previously in earlier entries.

I now look at my son, who was diagnosed at age 2 with autism.  He is now a young man, learning to drive, going to formals, attending honors classes, and looking towards a promising future.  I never take for granted his progress.  I am grateful.  His endurance and strength give many others hope.

Cameron does not remember those tough years.  I remind him occasionally.  He needs to know how severe he was, so he can appreciate where he's going.  I hope to teach him compassion for others as well.  Sometimes, when a person overcomes weaknesses, that person has a difficult time being patient with others who suffer that particular weakness.

I've watched Cameron mature and grow.  I'm impressed with his quiet demeanor and sometimes laugh at his subtle sarcasm.  He's a force to be reckon, so he still needs guidance, as a young man should.

Battle of the Cardboard Swords

After wrapping presents, the cardboard "swords" always tempt the boys to play.  As they have gotten older, nothing has changed.

Two cardboard rolls awaited them.

Cameron and Nick picked them up and dueled in the unspoken challenge.

They took turns charging, hitting, and retreating.  Then Nick took a swing.  Cam lost most of his sword.  In utter disbelief, Cam tried to piece it back together.  Nick smiled victoriously.  Cam acknowledged his defeat.

Sometimes the silliest thing are the best!

Expectations, Interpretations,and Assumptions

As we prepared for Christmas, I asked my youngest, 15 year old Cameron, to help me wrap presents.  I asked him to get the tape.  He came back with duct tape.  He then proceeded to "wrap" presents with the duct tape.  He even put a bow on one.  He thoughtfully marked who the presents were for with a permanent marker.  Very efficient and expedient.

Living with all males in the house, I forget that their interpretations of words might be different than mine.  Through my experience, whenever tape was mentioned, I didn't hesitate to get the scotch tape, so why would my son's be any different?  I assumed he would know.  However, his experience with tape has been duct tape, because duct tape fixes EVERYTHING.  His dad has taught him well.

Although my expectation was not met with what I assumed Cameron would get, I was happy.  He interpreted my words and did as I asked.  His version of wrapping resulted in a much different look than my version.  That's ok.  He helped, and we had fun wrapping in our own style.

As we gave family members their presents, they got a good laugh.  It all added to the celebration of Christmas.

Courage To Try

My sons are my heroes.  Case study: Nick.

Nick has been invited to go ice skating tonight.  He accepted the invitation. Then he turned to me and asked, "What do I do?"

Nick has never been skating.  No ice skating, roller skating, or roller blading.  For most of his youth, we have focused on his general coordination and balance as well as sensory and tactile issues.  Nick was in first grade before he could tolerate shoes.  He was in fifth or sixth grade before he could wear long sleeve shirts or long pants without prior conditioning.  Nick had adaptive PE for most of grade school.  Physical and occupational therapies were weekly occurrences until high school.  Activities like skating were beyond what we ever thought Nick could do!

Today, Nick's big brother, Mike, has lent Nick roller blades.  I have spent the time finding how-to ice skate videos online and then implementing the concepts with roller blades.  No, they are not the same, but the idea of balance is similar.  For a kid who has not done any skating, this type of motion is unfathomable.  However, Nick will not be deterred.

We started on carpet.  Then we moved out to the patio.  I led him.  He tried alone.  He fell.  A few times.  Two hours later, he's moving on his own.  Not graceful, but independent.  He has taken one break, only because his little brother wanted to try.

Nick has put the skates back on and has been alone for about 30 minutes, just skating back and forth on the patio.  Well, more of pushing and pulling himself, but he's moving a bit better.  All within a few hours.

I can't believe he is so determined to learn so quickly, and go with peers to do something new.  He truly is courageous.  So many people fear failure and embarrassment.  Nick's desire to go out with friends and potentially have fun outweighs his concern of any negative outcome. That's courage!

Nick's Milestones

Much has happened in Nick's life.  In the last month, he went to prom.  He graduated.  He received a scholarship.  He attended a local college band camp.  Those are the good things. Some not so good things happened too, but I'll save those for another day.  Now is the time to celebrate.

Nick had a challenging year, and he met them head-on.  At the beginning of the academic year, his case manager stated that he was flunking Spanish II and had to be removed.  That happened on day 5 of the year.  Nick earned an A-.  A far cry from failing.

The next challenge was being told from his school counselor that he could not go straight to the local university.  Nick had some special needs classes that supposedly the university would not accept.  I called the university.  They wanted to see Nick's transcript.  I sent it.  They enthusiastically said that they would accept Nick.  His grades were fantastic, and his class ranking was high.  Why would they not want him?  Of course, there were other factors to consider, but based on the transcript, Nick was welcomed to attend.

The third challenge was Nick's new case manager stated that Nick's plan for a fifth year at the high school could not happen because he was on course to graduate.  Nick had been planning on taking a fifth year to work on communication and reading skills.  I had emails documenting this plan.  The IEP team had agreed each year, that this would be the best transition plan for Nick into adulthood.  The case manager totally changed the game plan.  She said the only way Nick could continue was to participate in a special ed class that was wayyyyy below his cognitive level.  Even the psychologist warned me.  We observed and visited the program, but ultimately nixed it, and insisted on our original plan, which the IEP team again approved.

Throughout the ordeals, Nick focused on his studies and his goals.  I told him we would get through the obstacles, but he could not dwell on it.  He had to learn that this will happen frequently in his life.  People will judge that he is not capable of something.  People, no matter how well intended, will underestimate him.  People will have preconceived notions.  They just don't know Nick.

Yes, Nick has autism.  However, autism does not define Nick.  Nick is Nick, and only Nick can determine who he is.  In my eyes, he is turning into a successful man.

Mom Gone, Boys Thrive

The boys survived the week without Mom.  I was in TX the entire week for training for a new job.  I was wary about leaving my family for so long, but they did just fine without me.  In their words:  Ryan said, "I am not dead."  Nick texted, "I am foog," which I think was mis-typed but auto-correct made it worse.  Then Cameron humorously commented, "The house burnt down, but other than that, I am fine."  Yes, I missed my boys.

So I arrived home, not looking forward to the laundry and grocery shopping.  I was pleasantly surprised.  Their laundry was done, folded, and in the process of being put away.  (I bet someone yelled, "Mom's home," and they ran to put clothes in their proper dressers.

Then I found the refrigerator about as full as I left it.  Plenty of vegetables and fruit.  My boys didn't look scrawny, nor did they complain of hunger.  What did they eat? I checked with my husband.  Mike confirmed that they ate, and ate well. Mike pointed out that Nick started dinner on Friday, scrambling up eggs.  So they consumed food all week.  Probably just not the veggies.  So I really did not have to do grocery shopping for them.

So no laundry and shopping.  Except for what I needed done.  My sons continue to surprise me at their adapting abilities.  It's one step closer to total independence for all of them.

That is GOOD.

My Precious Aunt Pearl

Uncle Bill, Aunt Pearl, Sheryl

Last summer I travelled with my mother to Michigan to see relatives.  I had concerns about how my kids would manage without me, but I needed to go see some special people, my Godparents.  Too many years had snuck by, and their health was not the best.  This trip would also give my kids an opportunity to learn how to manage without me.

My mom and I spent five days traversing her old stomping grounds.  We met up with a few of her siblings and spouses and my cousins.  Her oldest brother and spouse, my Uncle Bill and Aunt Pearl, are my God-parents.  I first remember meeting them on a cold December night, when we were visiting during Christmas vacation.  I never knew snow could be so cold, and I understood why my parents left the freezing temperatures of the Midwest for the mild weather of Southern California!

During that December trip, we stayed with my Uncle Bill and Aunt Pearl for about a week, not venturing out much because of the cold.  For entertainment, Aunt Pearl gave my sisters and me some tips to playing the organ (although we played the piano).  We also baked, cooked, played cards, and bunch of silly things to pass the time.  It was simple fun!

After that trip, I started writing my relatives frequently.  I sent photos and letters whenever a special event in my life occurred.  My cousin, Anne, was really the only one who responded with regularity, but she kept me apprised of all in her family.

So it's been over 40 years since the December trip, and now my mom and I visit the same people, albeit much older.  Time had changed our physical features, but the same spirit of spunk remained.  I spent some one-on-one time with my Aunt Pearl.  She was still spry and sharp--at times.  When she wasn't, she said something, probably in Hungarian so I wouldn't know that she probably said something she should not have.  Then she smiled and cursed her "forgetfulness" or "slowness" with renewed patience and grace.  She laughed heartily, and carried on.  We all knew her time on earth was limited, as is all of ours.

I remember her laugh from 40 years ago.  Nothing loud and annoying.  Just a hearty laugh.  It was truly an endearing exclamation of joy and happiness.

Last Friday I received a call, informing me of my Aunt Pearl's passing.  Her family had gathered at her side, and she passed quietly.  I pray she passed peacefully.

Dear Aunt Pearl, I hope the heavens are filled with the sound of your joyful laughter.  Love, Sheryl

Hugs

My sister-in-law wrote, "Never under estimate the power of a hug. This simple gesture is not really simple at all. Its complexity in action and response makes it one of the strongest forces in the world, making it heal almost anything!"

A hug is how we found out about deep pressure, which helps relieve sensory meltdowns when my boys were young.  It was one of those days when I was hanging onto sanity by a thread.  Ryan couldn't talk at that time.  He wanted something and was going into a ballistic tantrum.  I couldn't figure out what he wanted.

At the same time, Nick was hungry and needed to be fed.  Both kids chimed out, "MAMA!"

I gave Nick a quick snack, so I could focus on Ryan.

I was in tears, trying to figure out what Ryan wanted.  I couldn't solve the mystery.  I ended up just hugging him really tight. At first, Ryan resisted.  He didn't like to be touched, let alone hugged.  There were dents in the wall from Ryan leaning backwards to get away from people who wanted to hug him.

Within a few moments, we both calmed down.  Then he hugged me.  He was about four years old.  I received my first hug from Ryan.

Later I mentioned this to Ryan's adaptive PE teacher.  She said they have weighted vests to help keep the kiddos calm.  The physical therapist also said that deep pressure helps.  She showed me how to apply it, and it worked every time.

Picture This: Growing Up with Autism

This last week, when I couldn't sleep, I sorted the boys' school pictures.  I laid them out side-by-side.  I was treated to smiling faces and seeing my sons grow into young men.

Except for when Ryan and Nick were four year old.  In those pictures, Ryan and Nick don't smile.  They look stoic, blank, and empty, as if they were in pain.  I was surprised to see how the autism symptoms manifested themselves.  Although we noticed loss of communication when Ryan and Nick were two years old, they were totally emerged into their individual worlds by the age of four.  They loved being left alone doing their own rituals or form of play.  (There is a slight pause at these photos of Ryan and Nick at age four.)

Then the pictures reveal how the boys slowly emerged, relating to the world around them.  Cameron took the video of the pictures, as evident at the end via his somewhat humorous self-identification.

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

My Oldest Turns 30

Michael is 30 today.  I often wonder what life was like for him, growing up with younger siblings with autism.  For several years, the younger boys were undiagnosed.  From my perspective, Michael was a strong support for his younger brothers, whatever problems they had.

Michael probably had to bear more than what he should have.  He set the example for my younger sons.  If Mike did something that was questionable, he heard about it.  Kids with autism learn quickly by example.  Usually, the things I wouldn't want repeated would be the phrases that they'd learn without effort.

We set a high standard for Michael.  Good grades, good behavior, good everything.  He usually did not disappoint us.  He was valedictorian at his 8th grade graduation.  He aspired to play sports.  He got his first job at 16, when he could drive.

He married young, but he was a devoted husband and father.  Now, at 30, he is much like his father--a very strong, reliable man.  If a problem is presented, he solves them.  If someone asks for help, he obliges.  Better yet, if Michael perceives an issue, he addresses it.

We didn't parent our younger kids as we did Michael.  He observed, "Mom, you never let me get away with that."  No, parenting with autistic kids is very different.  Our standards changed.  For example, the idea of straights As in school went out the window.  We didn't care about grades.  We cared about mastering the skill, task, or lesson only.  No grades.  Yes, our standards changed.  They become specialized.  We focused on success per each child, not a pre-set standard.

Michael's early years were sparked by a young, inquisitive curiosity--much like his adult years are sparked by challenging, demanding responsibilities.  He meets them with courage.

Happy 30th, Michael.

It's Japanese To Me

Ryan and Jennifer, his Japanese teacher

For so many years I have had to figure out how to teach "normal" tasks to my boys.  My boys can do most of the normal chores expected from teenagers now.  As they have mastered tasks, of course, new goals are set.  To make life easier for me, I've encouraged the boys to pursue interests or classes that I had some background or experience.  Therefore, I could help them if necessary.  As the boys grow up, they are expanding their horizons, beyond MY comfort zone.  I can't help them, and that is a good thing.

Ryan has developed an interest in Japanese. His interest has grown to include many aspects of Japanese culture.  I find myself listening to Japanese music. I dodge a swinging katana, a traditional Japanese sword, if I enter Ryan's room.  He's taken lessons to learn to speak the language.  He's totally independent of me in this endeavor.  I can't help him figure out anything if he's confused.  So he has to think for himself.  Not a bad thing by any means.  But I have to stop myself from trying to help him.  So many years of MY programming as a mom with special needs kids have to be undone, or re-programmed.

My role of MOM continues to change as these young men with autism continue to progress toward independent life!

Ryan's Lord Malevar

Lord Malevar

My son, Ryan, has written a few books, and he's using his photo shop classes at RMG Imaging Artists to illustrate his latest book.  He's using his knowledge to create his characters.  This portrait is of his latest villain, Lord Malevar.  I never knew a unicorn could possess an evil side.  Alas, creativity strikes.

Ryan showed me how he can manipulate the background and highlight different parts of his character

He is almost done with the first year of this program.  I can't wait to see what he will adapt as he progresses through the next two years!

So many times I've been told that kids and teens with autism are not creative.  They live in a structured system with no room for flexibility.  This simply is not concrete truth.  Yes, my boys prefer a known schedule.

We all can appreciate predictability to some extent.  I just don't like most people thinking that the autism population is so rigid.  They are not!! Sometimes my boys surprise me by their problem solving skills--simply by thinking outside the box.  They can be very creative when given the chance.  They express an array of emotions and feelings as well.

Whether it's through music, books, or art, my boys with autism open their world to us in their own, creative ways.

A- Is Not Good Enough

A younger Nick

A few years ago Nick received his report card.  Straight As.  Most kids would be ecstatic.  Not Nick.  There was a problem with one of his As.  It had a minus sign after it.  Well, another A had a plus after it.

Yes, Nick had 5 As, 1 A-, and 1 A+.  He was not happy with that report card.  Sad.  The obsessive/compulsive aspect of autism shows itself!  Nick simply stated, "I want straight As. No pluses nor minuses.  Just As."

He could not get over that A-.  It just wasn't good enough.  He didn't try hard enough.  That lead to him thinking that he's not smart enough.  And the thought process did a downward spiral.  He started doubting everything he did.  "Is this good enough?"

At moments he was ballistic.  He brought it up constantly.  I had to reassure him that he had done well!

I spent days trying to get Nick to see that his grades were great.  More importantly, Nick said that he loved school, and he was learning a lot of new things.  That is what Mike and I strive to encourage.  We really don't care about the grades on the report card.  We want our boys to love learning and seek knowledge.

With today's emphasis on SAT scores and standardized tests, let alone report cards, we continue to stress to Nick that these items may be important to the world, but HE is what matters to us.  What is he doing?  Is he putting his best effort forward?  Does he like what he's doing?  All these will carry over to his adult life.

This year Nick received a C in Algebra II in the first semester.  He is proud that he brought it to a B.  Again, I told him that I glad he's happy, but what matters most is that he is learning the math. He reflected that he loves math better than any grade, and he wants to be a math teacher.

Best Christmas Gift: All My Sons Together

Nick, Stuart, Ryan, Cameron, Michael

Not exactly a Christmas photo, but it was taken a week ago.  They had planned a garage sale together.  They all contributed in some manner, and they split the profit.

I don't get to see my boys together very often.  Mike moved out a decade ago, so activities that include all of them are rare.

I enjoyed seeing them work as a team, and getting along.  So many times I hear that siblings don't get along, especially when special needs like autism are involved.  Best Christmas present a mom could ever get!

Merry Christmas!