Nick Earns an A, After Supposedly Failing

At the start of each school year/semester, I send an email to my sons' teachers, advising them that my sons are on IEPs due to autism.  I highlight how my sons learn.  I also give indicators to observe if my sons understand the lessons and concepts.  Too often, the teachers, especially the teachers of the mainstream classes, do not get any information until the second or third week of the semester that my sons have autism--which is too late.

I received the following email five days into last semester regarding my son's Spanish II class:

Good Morning Mrs. Johnson! 

I wanted to introduce myself.  I am Ms. C. and will be Nicks case manager this year.  Thank you for the detailed information about Nick.  ...he is failing Spanish 2.  Has he mentioned anything to you about this? I am not sure if he even knows.  Ms. S just walked in and was wondering if you would be opposed to changing his grading to Pass/Fail or would you like to find a different elective for him to be placed in?  I am sorry to bombard you with this, however, I am glad we have found it early in the semester where we still have options.

I was mystified.  How can my son be failing before a test had been given or an assignment graded?  The more I thought about this, the more dumbfounded I became.  What did this case manager base this decision on?  My son had As and Bs in his Spanish I class, and that teacher had figured out how to accommodate Nick's autism.  Not only did Nick survive Spanish I, he enjoyed it.

How many autistic kids, who barely communicate in their native tongue, take on and succeed in a foreign language?  Well, my sons have never fit any statistic.  I've raised them to think that they can do whatever they want.  They may have to work harder than others, but they can succeed!

So why is this case manager claiming that my son is failing on the fifth day of the semester?

In short, I've seen it all before.  People underestimate my sons with autism.  My boys do have a disability, but they are not stupid.  They may not be able to communicate as well as others, but they can relay information.  They can tell you what they know, just not necessarily in the format wanted.

If this special ed teacher had taken the time to research Nick, she would have found his transcripts show a student with a 3.5 GPA.  She would have seen he has taken some special ed classes and many mainstreamed classes, including a college math class.  Despite autism, this kid pulls awesome grades, illustrating mastery of concepts.  At the end of the semester, Nick earned an A- in his Spanish II class--a far cry from failing.

Nothing infuriates me more than someone who "thinks" he might know my sons, based on textbook studies of autism.  In this case, a special ed teacher made a judgment regarding my son, Nick.  I sent an email inquiring how she concluded Nick was failing.  I never received a response.

This is what I do most days--ensuring that my kids get what they need to succeed in their dreams.  I don't do the work for my sons, but I make sure that no one stands in their way.

I have spent many hours getting my boys through the school system.  Now they face adulthood, and the work is just beginning--for all of us.

Autistic Sons Admire Sunset

Being a mom of special needs kids taxes mental and physical energy.  I can get caught up in tons of paperwork and appointments.  There is always something waiting to be tackled!  Interruptions don't help.  Doorbells, phones, and texts are among the common agitators. Even the kids' yelling, "MOM," can grate on the nerves.  That "Mom" quickly shifts from "Mom?" to "Mom!!"

I cringe.  "Just let me finish this," I yell.

As a result, I can miss some great moments.  This last time, the call of "Mom" was to see a beautiful sunset.  If I had persisted in finishing my task, I would have missed it.  I was amazed at how fast it changed within seconds.  By the time I got the closest camera out, the colors had moved far away within those moments.

This was not an emergency, but it was important.  I am glad my boys demanded my attention, and I came.  We shared a few moments of an awesome, stunning sunset.

This also illustrates that kids with autism can appreciate the beauty of nature.  Many assume that autistic people lack the cognitive ability to appreciate nature or items that are beyond their touch.  That is simply untrue.  Actually, it may be we who are caught up in the paperwork who don't have the cognitive ability to stop and appreciate nature!!

In this case, my autistic sons stopped to admire the sunset.  THEY believed it was important enough to call me.  This just reinforces we don't always know what autistic kids can do!

Nice Shootin' Tex

Cameron texted on Saturday that he wants "to be shooting at marksmanship more" because he beat the marksmanship captains and broke the pistol record.  He surprised me that he had beaten more experienced shooters.  He later told me that the funny thing was, for the M4 sim, he was shooting lefty so he could see.  He did "surprisingly good".

Cameron is right handed, so that is why I was also surprised at his results. I wonder how well he would have done if he had shot with his right hand, wearing his glasses.  He replied that his glasses probably have a lot of dust on them.  I wonder if he even knows where those glasses are. Maybe this will be an incentive for him to wear his glasses!

His final update read, "My M9 high score, which is THE high score, was 189, and the M4 high score was 69."

"Wow," was my reply, even though I don't know what an M9 or an M4 are.  I assume a rifle and pistol.  Here, I am worried about my son getting the proper education to use the firearms.  The irony is I also need to get educated as to what he's shooting!

Cameron vs Camp Pendelton

Looking down the barrel of the gun

Cameron left yesterday with his JROTC class for four days at Camp Pendelton in Southern California.  I read out loud to Mike everything that we are signing away on the release form, and Cameron was loving it: (injury from but not limited to) flying projectiles, explosions, flying and motor vehicles, live munitions...  The list goes on.

Activities involving massive weaponry would make any mom worry.  Not me so much. Instead, I worry about the military base surviving Cameron.  I think we should have had the administration on the base sign a waiver releasing us from lawsuits as they are bringing Cameron onto their field...

My dad introduced Cameron to real firearms when Cameron was quite young.  We wanted to ensure that Cameron, as well as all our boys--even with autism, knew how to use and respect guns. Consequently, my dad has taken the boys to a shooting range. Since then, Cameron has been working on marksmanship randomly, and he loves it.  He has decorated his room with the paper from his target practices.

I am not sure where Cameron's interest grew.  Perhaps, video games and movies have inspired and enticed him.  He has joined the marksmanship club at school, so he continues to learn about the weaponry as he practices.

Cameron has found a hobby he likes, and he is quite good at it. Through the JROTC, he should learn the self discipline necessary to handle the dangers presented.  Of course, they don't use live ammunition on campus, but guns still demand to be treated with care and maturity.  Cameron can be quite "spirited and enthusiastic" when given an opportunity to be unleashed!

Cameron is thriving on it all!

Here's a link to Cam at target practice:  http://sherylscript.blogspot.com/2014/07/in-spirit-of-second-amendment-learning.html

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.

An Accomplished Young Adult with Autism

Mike with Nick at Senior Night

As the football season comes to a close, so does the marching band season.  Tis bittersweet for Nicholas, as he loves the camaraderie of the marching band. However, we have a reprieve!  The football team is in the playoffs, so the marching band continues to perform.

A few weeks ago, the marching band celebrated senior night.  My husband and I escorted Nick in front of the football stands during halftime.  As we walked, the announcer voiced Nick's goals after high school--to study music and math.  Nick beamed.  He gave me a rose and a big hug.

Before giving roses to moms

I cherish these moments. Memories of his challenges as a youngster with autism are never far from me. Memories of Nick struggling with loud noises, and now playing in a marching band. Memories of Nick trying to express himself in words, and now expressing himself musically. Memories of Nick overcoming so many issues...  Nick is now emerging as an accomplished young man with autism.

This is a moment to celebrate in the life of Nick!

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

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 

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:

Ryan

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??

 

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!!

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

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

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!

Smile Sadly

Nick and Cam

Autistic or not, facial expressions reveal a lot about us.  Feelings just flow out.  Quite often, we can misinterpret a gesture or a word, but faces expose truth.

Today was the first day of school.  Tis easy to guess who is the senior and who is the freshman.  Just look at their faces!!  One has one more year, and the other has four.

Nick gave Cam quite a bit of advice.  Quite a novelty to see Nick taking the big-brother role!

The bright side for both of them is that they "face" only 179 more days of school.

Serious Fun

Nick and Cam are characters. Studious, serious, and conniving at times.  They joke and jest.  Quite often, they can be unpredictable, such as when they were on their own this last weekend. 

They survived the four days with no mishaps.  They even found a place that sold gluten-free pizza.  That was important enough that they texted me.  Good choices.  Yea.

I was quite surprised to see this photo taken at the beach.  I don't think I would have recognized them.  I guess this is called serious fun.

Nick and Cam On Their Own

Nicholas and Cameron are on their own this weekend.  This is the first time that they will be away from us parents for four days. They are travelling with their youth group, heading towards the coast.

They are excited about their adventure.  Being on their own--freedom.  Right?  With that freedom comes responsibility.  Will they eat the gluten free foods?  Will they follow directions?  I hope they'll look out for each other.

I am both excited and anxious.  Problems could arise, and I won't be there to help.  They have to figure things out.  Of course, if an emergency arises, they can call.  I prepared them about situations that could happen and how to handle them, but how do we really know what can happen and how they'll react?

I worry, but we all need to know how they do on their own.  The only way to know is to let them go.

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.

In the Spirit of the Second Amendment: Learning to Shoot

Guns.  Controversial to say the least.  A person either loves them or hates them.  In our house, we chose to educate our kids about them.  With autism or not, my boys are typical, and they like to shoot guns.

I grew up around guns, and I learned at an early age to respect them.  My dad taught me what damage can be done.  Empty soda cans were my usual target.  Different bullets left different holes.

I was about ten when I shoot my first live target.  After it fell from the sky, my dad and I searched the grounds until we found it.  "It" was a beautiful bird, with deep blue and green feathers.  It's head was barely intact.  Talk about my euphoria quickly dampened by reality.  We took home what we shot.  Dinner.

Nowadays, too many times, an accident is reported on the news about a kid shooting a sibling or a friend out of curiosity or play.  I don't want my kids to be one of those statistics.  I don't want my kids to fear guns either.  The only solution is to teach them.

With proper gear and training, my boys shoot.  Grandpa takes them to the local shooting range.  Their accuracy improves with each visit.  Onlookers are usually surprised when they find out that the boys have autism.  Some are even quite impressed when looking at the paper targets.

Yes, my boys had to overcome sensory issues and master fine/gross motor skills in order to be able to shoot.  Years of occupational and physical therapy.  We take nothing for granted.   Of course, our boys' safety comes first.

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!

Anniversaries--When Autism Joined Our Family

Eleven years ago we stole away for ten days.  It was the first such trip since the boys were diagnosed with autism.  Mike's mom came down to take care of the boys.  We had no idea how they would react when they realized we were going to be gone for so long.

At that time, we actually didn't know Ryan and Cameron were autistic.  Only Nick had been diagnosed.  Ryan and Cameron would be diagnosed within a couple of months.  Had we waited to go, I don't think we would have left after hearing the diagnosis of all three.

Thank God for grandmas.  It was a much needed break to refocus on us.  Mike's mom reassured us that all will be well.  Our kids loved her, so we had no doubts.

Well, we did.  We bought cell phones--our first cell phones before we left.  Leaving our kids for the first time for that duration was scary.  We bought cell phones for that "just in case" emergency.  No one ever called for an emergency.

We had a wonderful time celebrating our 13 years.

Today We Reached 24 Years

Sheryl & Mike:  24th Anniversary

Mike and I have spent over half of our lives together, and we still like each other.  Of course, we still love each other too, but being friends coincides with being spouses.  I am amazed that 24 years have flown by.  It's good to stop and celebrate these occasions!

People have been asking me how many years have we been married, and I reply, "Twenty-four."  They usually say, "Ahhh.  Then next year is the big year.  Do you have any plans?"

I am blown away. What is wrong with celebrating the 24th Anniversary?  Yes, 25 is big, but we're not there yet.  Why not focus on the year we had?

We've had a few major milestones:  Ryan graduation from high school.  Nick and Mike went to Hawaii.  Ryan and Nick earned their driving permits.  They also had their first jobs.  Among others.  Yes, this list is really about the boys, but that is reflective of our marriage:  family.

Happy 24th Anniversary Eve

Mike & Sheryl 2004

Tonight we spent on our own--a quiet afternoon/evening together.  The boys are with their biggest brother working on the backyard, which yields time for Mike and me.  We had a simple, quiet dinner.  Nothing fancy.  We were happy just spending time together.

It's nice to know that we don't need any hyped-up activity to keep us entertained. With young adults with autism, life is exciting enough.  They keep us going as we never know what they'll will do, or what bureaucratic mess might be thrown at us.

I smile as I write that because autism is a world of its own.  One I could do without, but it is a part of our lives together.  Together, we meet it, head-on.  But it's only a part of our lives.  We keep that perspective.  It does not define us.  We are much more.  We have to be to keep going!  

Happy 24th Approaching

This coming Monday will be our 24th anniversary.  Time to make a toast and celebrate love and family.  We'll keep it simple.  Some relatives and friends.  And the kids.  I thank God for 24 wonderful years!

Mamas On The Run

My mom and me

My mom and I have escaped to her hometown in Michigan.  I was pregnant with Nicholas when I last visited my relatives, 18 years ago.

When I was growing up, my family and I visited Michigan every other year, on average.  Our vacations always included visiting cousins, grandparents, and extended family.  We usually drove throughout the country and stayed with family members.  It was rare to stay at a hotel. The best parts of our vacations were not the activities or sight-seeing tours.  The best parts were being around family, or doing those sight-seeing excursions with family.

I wanted to continue these outings with my own family.  Unfortunately, travelling with kids with autism is difficult as their schedules are interrupted.  Staying with extended family is tough because the relatives don't quite understand what can trigger a meltdown or tantrum.  Relatives are not usually aware of sensory issues or lack of communication skills my boys have.

In the last couple of years, we have started to travel with our boys.  They have learned to adapt well.  I have include them in planning, so they will know what to expect.  They usually look forward to the adventures.

This trip is without the kids.  Unlike most vacations, this trip has a purpose:  to see my Godparents, who are my mom's brother and sister-in-law.  Too many years have sped by, and we are all much older.  Most of our time is spend sitting and chatting, catching up.  Not the type of activity that my boys could endure for long.  So, it's just my mom and me.

photo credit:  Michelle Nicolai-Hoffmeyer

Champions: Everyone Loves A Winner

Cameron

Cameron's baseball team won the championship 24-9.  That may sound as if Cam's team had an easy win.  No such luck.  They worked hard and earned every run.  The game lasted 3 1/2 hours.  The boys played their hearts out.  Stamina, endurance, patience.  All paid off.  It was in the last two innings that Cam's team brought the win home.  The other team seemed to burn out.

Their opponents were worthy. The score in the game was actually very close for most of the game. The lead switched a few times, pending who was up to bat. Suspense loomed.  No win was predictable. We were ahead. We were behind. Parents stood, clapped, and cheered. Then sat in disbelief and shock. Up and down. We got our exercise!!

Some of the umpires' calls were debatable too.  That became a series of lessons of good sportsmanship. Even Cam's run over home plate was a point of discouragement.  We ALL plainly saw Cameron touched home plate seconds before the ball came within reach of the catcher's glove. The ump saw it differently.  Ouch.

The beginning of the season brought together a bunch of kids.  The team had one practice and then three scrimmage games.  This was a different league than Cam's league of last year.  The kids were a bit older and experienced.  Poor Cameron had only one year of baseball under his belt. He was determined to be a good as the rest.

This was a kid who had to relearn how to walk and talk at 13 months. Cameron suffered a major set-back after the MMR shot.  He lost physical coordination, let alone communication.  I was very impressed that he persevered in this sport!

If the first few games were indicative of the season's outcome, Cameron's team should have been at the bottom.  They tied and lost.  And lost badly.  Throughout the weeks, they slowly improved.  Enough to put runs on the score board.  Enough to eek out wins.  Eventually enough to blow the other teams away.

I love what competition has taught Cameron.  Life is tough.  Not everyone gets a trophy.  Wins are earned through slow progress.  Spontaneous gratification is not a given.  Although we love the wins, they are not everything.  How the game is played is vital.  Teamwork is as important as individual effort.  Keeping one's principles in tact is just as valuable as that win!!

Go, Cam!!

Stuart Moving Out

The mission of a mom's love is to say good-bye.  Pure and simple, that is what a mother wants:  to raise her child to become an adult who can go into the world and be the best that he or she can be.  Of course, that is oversimplified.

My son, Stuart, has officially signed a lease for an apartment.  He's moving out of the house.  Stuart is more than ready, yet not quite.  I don't think anyone is really ready to move out.  The only full proof way to learn how to be on one's own is to be on one's own, like on the job training.

He'll have to meet deadlines, plan his time, budget his money, etc.  Oh, and those choices.  He'll have to make wise choices.  The School of Hardknocks is a tough one, but it employs one of the best teachers:  Experience.

Stu's moving out is really a bittersweet moment for me.  Stuart was diagnosed with a speech delay in first grade.  The kindergarten teacher was the first to point out that Stu seemed to stray in conversations.  Mike and I had noticed some variances from normal conversation, but nothing really askew.  The most noticeable issue with Stu was his word choice.  He'd use a related word instead of the usual word.  For example, "How many pounds are you?" vs "How much do you weigh?"  I often wondered if Stuart will ever understand the proper words to use.  Will strangers be able to understand him?

His speech delay hampered his development of vocabulary.  He was very literal.  He understood synonyms, antonyms, and homonyms, but he studied them to understand the relationship of the words. When it came to homework, he had to work twice as hard as his peers to learn half as much. Nonetheless, he was always on the honors list.

At school, I met with teachers before school started to explain Stuart's learning disability.  Because Stuart didn't "present" any disability, most teachers would assume nothing was wrong.  Once I pointed out the issue, teachers would realize and acknowledge the unusual way he interpreted lessons.

When Stuart went to the junior high school, life became a battle.  With the change of teachers for each class, Stuart had to work even harder to maintain being on the honors list. The teachers denied Stuart had a disability.  Teachers even challenged the last psychologist's report.  I had to go to the district level to resolve this problem.  Funny part of this was that the school psychologist who had tested Stu was now the head of the psychologists in the district.  When she called the junior high, I had no more problems.  For the most part.

Stuart decided he wanted to be home schooled for high school.  I tried to talk him out of it as my youngest was going into first grade--school for a full day.  I thought I might have some time to myself. HA.  Stuart presented very sound reasons for being home schooled.  Hence, he was home schooled all four years.  During his freshman year, he tested at par regarding his speech.  Thus, he had no more speech therapy.  Language-based classes were difficult, but he studied independently.  He also pursued and received a piano scholarship and earned his massage therapy license too.

He has completed his AA in business and is continuing his education at the local university.  He's working two jobs to pay for his tuition.  He's had a steady girl friend for three years.

Stuart is moving out.  I'll still worry, but I smile.  Mission complete.

Michael Graduates

Michael and Brandy

My oldest son, Michael, graduated from college last weekend. Quite an accomplishment!  Like all of us, there have been obstacles in his path.  Not to be deterred, Michael has overcome them.  On his own. It's taken a long time, but that doesn't matter.  The end result outshines all else.

I used to think that the quicker a goal could be achieved, the better.  I was very young when I started college.  I was 16 and still in high school.  I crammed a four-year degree in 3 1/2. Hating school was a great incentive--get it over quickly. However, I applied the quick-is-better mode to a lot in life.

Autism has taught me that speed means nothing.

I have learned that getting there is just as important as an accomplishment. Throughout my son's college career, Michael has been a role model for his younger brothers with autism.  He has been a wonderful, supportive son--offering reprieve when he sees me wiggin' out.  I can't imagine attending collegiate classes and being available to hang out with littler brothers or a crazed mother.  Michael has done it all.

I am a very proud mommy!

Congratulations, Michael!!! 

Michael and his cousin Yesi with diplomas

photo credit:  Yesi Russo

Happy Mama's Day Surprise

"I'd love to receive beautiful flowers, tasty chocolates, even floating balloons and bubbly champagne,"  I stated emphatically.  Commercials say don't buy proverbial flowers, chocolates, and the like.  I say, "Wrong!"  What's wrong with flowers and chocolate?

Out with friends the other day, we were talking about gifts for weddings, graduations, and other occasions.  Mother's Day came up.  I commented that I don't need gizmos and gadgets.  Don't need anything at all.  BUT IT'D BE NICE to be surprised.

My husband was there, and he paid attention!!

No, I'm not particularly materialistic; I don't like clutter.  The less furniture and knickknacks, the less to dust and clean. When it comes to celebrating occasions, big or little, I don't expect or want a lot of stuff.

I suppose I am a lucky wife and  mother.  My boys and husband know me well.  So they don't get me anything huge (or anything at all sometimes).  However, this mother's day, my husband surprised me with all--beautiful roses, bubbly champagne, chocolate covered strawberries, and a floating balloon!

Very thoughtful gifts.

...and there'll be nothing left to dust!!

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!

First Paychecks for Ryan and Nick

Ryan in his new role

Easter has come and gone, and so has the Easter Bunny.  Literally. Ryan and Nick's jobs are finished as the Easter Bunny moves on, but not without some unexpected surprises.  Ryan was able to fill in as "The Bunny" when needed.  He loved it.  He liked to interact with the kids, but he didn't have to talk!  A dream job for someone with autism!!

Saturday was also pay day.  Both Ryan and Nick received their first paychecks.  Smile they did.

This has been a wonderful learning experience for both of them.  They had to learn to speak up to get information.  They were guided on their duties throughout the few weeks.  Mike and I transported them to and from the job.  Sometimes they didn't like the wait, so their driving becomes paramount now.

Tis one more step towards independence!  (Theirs and ours!!)

A Miracle?

"To one who has faith, no explanation is necessary.  To one without faith, no explanation is possible." ― St. Thomas Aquinas

Four years ago I experienced an amazing event.  It's a matter of healing and faith.  I can only describe what happened, and leave the conclusion to the reader.

About 17 years ago I began to lose function in my left hand. This greatly effected my playing the piano.  As the years progressed, pain accompanied the loss of action, and my right hand experienced the same loss and pain.  The type of pain was never consistent.  I eventually lost strength and the ability to hold things. Teaching the piano was coming to an end.  I couldn't imagine life without music, let alone my livelihood.

My family had witnessed my loss.  I remember getting strange looks when I accompanied my dad.  I couldn't hide my wrong notes as he sang.  Consequently, I stopped playing in public.  I used CDs and DVDs to aid in teaching my advanced students at the piano. At dinner my sons ran to catch their meal if I yelled, "Help!"  They did not like it when I dropped the dish full of food.  

In late 2009 I announced that I would retire in May, 2010.

Totally unrelated to this ongoing matter, something else was brewing.  The economy was bad, and Christmas approached.  Money was tight.  I tried to think of how I could put something out of nothing under the Christmas Tree for my young boys.  Something simple. I recognized I was not a creative person, but I refused to give up.

And I prayed.  Not necessarily for presents, but for my family.  I found myself praying the rosary.  Now to some, that may be an old prayer for old ladies or an outdated set of worry beads.  Oh well.  I decided to pray because it certainly couldn't hurt.  This particular day in December I ended up praying all four sets of the rosary (20 decades).  I was stuck in the car all day, and I had plenty of time.

That night I felt such peace--indescribable.  Peace, nonetheless.

I liked that peace, so I dared to repeat the 20 decades of the rosary a few days later.  The peace returned that night.  Thus, a habit formed.

A month later, I met with a friend who was a priest.  He noticed I couldn't hold my coffee mug, and I briefly explained my incapability of doing so.  He offered to bless my hands.  I accepted, but with the thought, "It couldn't hurt."  I was not expecting any great results.

I played for my niece's wedding Feb, 2014

I continued my rosary daily, saying all the mysteries of the rosary.  I prayed for my family.  I never asked for any healing for myself.  Within a few weeks of the blessing, I noticed the pain in my hands and wrists had subsided.  Function returned.  As of April 16, 2010 my hands and wrists were pain free.  I had also regained all use of my hands.

The story doesn't end there.  The summer of 2010 I found myself being offered a position as a pianist at our local church.  Four years later, I have full strength, no pain, and play more music than ever.