Category: autism

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!

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.

The Path After Graduation Began…


The first step to getting Ryan on “a path” was to tell him that he can’t stay in our house and do nothing. This was in response to a comment he made a couple summers ago about wanting to be independent without responsibility. That is just not going to happen.

Mike and I told Ryan that he needs to make some goals, and he needs to be doing something constructive.  Otherwise, I am going to continue “strongly guiding” him on what to do–or arrange for him to be doing things—which may not be to his liking. Our focus is to find a trade or career path that “zing” that Ryan will enjoy and can be financially independent.
Ryan’s big priority is his book, so I have tried to relate everything and anything towards that. Currently, Ryan is taking introductory computer classes at the local community college.  The reasons for these classes are twofold:  to see if Ryan can handle collegiate level classes and to help develop computer skills for potential employment.
I’m taking these classes simultaneously with Ryan.  We don’t sit next to each other; keeping our mutual independence is vital.  However, Ryan is enjoying the experience of tutoring me.  He has called me “entertaining” a few times, because I just “don’t get it”.  Obviously, he “gets it” with ease.
The photo finishing class is an attempt to open a door to a trade. I wrote how this came about in an earlier blog entry.  This class will offer an opportunity to Ryan if he wants to illustrate his book in the future. The teachers were impressed with his computer skills, so they think he’ll learn the material quickly.
Ryan is also on this kick of anything related to Japan.  He likes the antiquity and culture.  An former coworker of mine used to live in Japan. She is teaching him–very much home schooling style.
Within the last several weeks, Ryan has committed to writing five pages a day for his book. That is a chapter a week. He is really proud of maintaining that, and we encourage it.  We push the other items too. 
Always trying to keep a balance!

Mom’s Homework: Communication and Paperwork

School started last Wednesday, Aug 7.  I am not a huge fan of school.  I get a lot of homework.  People laugh when I say that, but I really don’t find humor in it.  I’m not going to classes, so why do I have homework?  Someone has to be my sons’ advocate!  I am not even going to mention the forms that have to be filled out annually.

To start, I make sure every teacher knows that my sons have autism.  Two years ago, I didn’t do this, and it took the case manager a month to get the IEP out to the teachers.  After a few weeks of school, I could see Ryan struggling in a class, and I wrote the teacher about his having autism and the accommodations in the IEP.  She had no clue that Ryan had autism, and she asked, “Won’t he ask questions like everyone else?”  My response was (sigh), “No.  He has autism.  He doesn’t like to talk, let alone ask questions.”

I learned my lesson, that I was right, to take the initiative and communicate with the teachers.  The one year I didn’t became a difficult year, well, more difficult than normal.

Back to this year.  Last Monday morning I was up and at the computer by 7:10am.  At 7:16am I sent my first email.  By 7:47am I had written 5 emails to teachers, explaining issues that Nick was already experiencing, mostly due to a schedule mishap.  Someone had left his third period blank.  Most classes by this time had been filled, so to find an appropriate class was next to impossible.  Once filled, Nick was told that he’d keep all his current teachers.  Relief.  A few seconds later, he was told that one teacher would be switched.

By that time Nick had already processed that the teachers would remain the same.  For him to process and switch back to the issue, which was just concluded, was missed.  That happened last week, so now I’m trying to see what we can do to get that one teacher back on Nick’s schedule.

No communication was given to any teachers involved, except what I had sent out.  Some teachers responded back quickly.  By 10am I had sent and responded to about 15 emails.  That’s not counting phone calls and voice mails.

The teachers were grateful for the communication.  They were very willing to work with Nick until the issue was resolved.  Thankfully, Nick decided to keep the classes he had.  He was finally able to tell me that it was the change itself.  Once he went through the new schedule a few days, he was fine.

I am thankful that the teachers were patient and understanding, but it took my time and effort to communicate with the teachers about Nick.  That is my homework!

The Only Disability Is A Bad Attitude

I love that quote.  Allison Williams, a fourteen year old girl with Down Syndrome, gets the credit for that quote. She was not allowed to be on her high school’s cheerleading squad due to her disability.  Below is a link for more information about her situation.

If a person can keep a positive attitude, so much more can be accomplished.  Sometimes, when my boys with autism hit an obstacle, they tell me why they can’t do it.  I tell them that I am not interested in what they can’t do.  I am interested in what they CAN do.  They set their own limits. Then I am always astonished at their accomplishments.  They are too!

I look back ten years to when the boys were first diagnosed and the “unfavorable” prognosis for them.  Not much hope was given.  Well, no hope.  My husband and I had a choice to make, and that was literally a life threatening choice for our sons, ie whether they’d have the best life they could have or not.

As they are now growing up, that choice is becoming theirs.

What type of life will they lead?  Do they wish to pursue their dreams and push their potential or not?  Will they continue to thrive or just survive?

The answer remains in their attitude.

http://www.ohiolife.org/blog/2013/6/17/ohio-high-school-bars-student-with-down-syndrome-from-cheer.html

Ryan Graduates

It’s been a long time in coming.  Ryan graduates, and he is done with schooling.  For now at least.  It’s time to celebrate.

Ryan was three years old on his first day of school. He did not go to pre-school.  He went to a “communicative handicap” class.  He did not talk.  At all.  At this point I had never paid attention to the word autism.  No one said Ryan had autism.  Ryan just didn’t talk.

Maybe he was deaf.  Maybe his brothers talked for him so he didn’t have to.  Maybe his mother just held him too much, so he didn’t develop normally.

I heard all the above and much more from doctors and family members. None of it was true.  Ryan had been talking.  Ryan talked, laughed, smiled, played.  All normal, typical behaviors.  Then it all stopped.  Autism hit. Fast forward through years of diagnostic tests and multiple therapies, we arrived at a milestone.  Graduation.

Ryan has successfully completed a general course of study.  That only tells of the academic success.  There’s also the mastery of sensory issues, spinning, talking, etc.  Ryan may not have been valedictorian, but his accomplishments are no less.

Very proud of him!

In A Hurry To Go Nowhere


Working full time leaves little time for errands and tasks.  My weekdays are filled with the “job”, piano lessons, dinner, homework, and sleep.  Saturdays have become the” hurry to wait” day.  I have so much to do, and only Saturday to complete them.  I don’t like waiting in line, but that is the reality:  hurry to wait at the gas pump, the bank, grocery stores, etc.
People ask me what is wrong with doing something on Sunday.  Well, I need down time, and if the Good Lord determined that we needed a day of rest, who am I to argue?  (and I’m too tired to!)
So Saturday is the day to tend to household chores, cooking for the week, and running all those errands.  Last Saturday I woke up at 6 a.m.  No, I am not crazy.  After getting up at 6 a.m. all week, I didn’t need an alarm.  However, I didn’t get up for a few hours.
Up at 8am, I started grinding wheat.  Made sourdough.  Used up old sourdough to make pizza.  WIN.  The boys love pizza for lunch.  Pulled out meats to defrost.  Made small grocery list.  Went to one store.  Realized I forgot checks to cash at bank.  Went home.  Grabbed boys.  Went to next store.  Got gas.  Realized I forgot checks again.  Went home.  Went to farm.  Stopped at bank to get cash out of ATM—because I forgot the checks. Again.  Farm only takes cash.  Wait in traffic.  Construction on roads.  Wait.  Wait.
Then I arrived home.  Make dinner.  No, make 5 dinners.  With boys’ help.  Each of them is responsible for making dinner.  We freeze food.
That’s part of Saturday’s agenda.  I’ve left out a ton.  Can’t even remember the last half.  Except sleep.

Joining The Workforce–Again

Yep.  I am working full time again.  Life with autism isn’t cheap.  Therapies, foods, doctors, supplements, etc. are expensive.  Insurance doesn’t cover a lot of what we do.  However, the boys have thrived best with what insurance doesn’t pay.  Figure that one!

SO the saving account is depleted.  The credit card balances are climbing.  A financial adviser would think that we are insane.  Nonetheless, Mike and I agreed long ago that we’d do whatever we could for our boys–to help them learn to be independent.  Money would not be an object.  Our boys are priceless!

The most expensive  item we ever purchased for the boys was the pool.  The doctors and therapists all agreed that a pool would be the best therapy for the boys.  We were not disappointed.  The boys learned to swim.  They played and socialized. They received their physical therapy in the pool for a few years. Now they hang out in the pool.

Getting back to work–I’ve been working at the same place for about six years.  It is seasonal, temporary, full time work. It’s good to exercise my brain. I work on projects.  This current project is scheduled for five weeks.  I have worked here long enough to make friends.  The “regulars” are like a family.  Of course, as in all work places, some people are more important than others.  It is good to connect with these people.

Last year I had the opportunity to work from home.  It was great.  It was bad.  I loved being able to work at my leisure.  I actually took off to the beach last year, and I was able to work at coffee house, at the beach, or at any quiet place I chose.  The bad part was having to discipline myself to follow a work schedule–even if it was the schedule that I set.
 
After this project, I’ll be able to pay off a credit card.  That is the upside.  The downside is life is more chaotic, but that is good for the boys.  They are learning to do things on their own.  I am always surprised as to what they have done.  Or not done.  I am not saying the surprise is always good, but yes, I am always “surprised”.  HAHAHA  A good, no– a great sense of humor helps in this realm.

Yes, I do look forward to payday!

Husband’s Birthday, But Who Is He?

Mike

Today is Mike’s birthday.  I have known him for 24 years.  We met at the hospital where we worked.  We kept it quiet from most people.  The hospital grapevine was better, faster, more efficient than the twitter of today.  When I first met Mike, he always had a smile on his face.  No matter what he was doing, his smile beamed.  That’s probably what drew me to him.  I like being around happy people.

Then there were Sam and Evelyn.  They were an older couple who volunteered at the hospital.  Although they were in their 80s, they were active, sharp, and witty.  Very astute and wise too.  Not much could pass their eyes as they sat at the front desk to greet visitors.  Even the people who would try to sneak in stuff to patients’ rooms.  These two volunteers would gently, but firmly remind these people the rules of the hospital and the safety of their loved ones.

Mike with his sister Dana

I am not sure when Sam and Evelyn figured out there was “something about Mike and Sheryl”, but figure it out they did!

Sam and Evelyn let me know exactly what they thought of Mike.  I couldn’t pass their desk without hearing something about Mike.  Every time they talked about Mike, it was high praise.  “He is a quiet, hard working, clean cut young man.  He will take good care of you.”

One time Sam scared me.  He grabbed my arm, and said he had to talk with me.  I thought there was trouble, but Sam just wanted to tell me how Mike helped him.  Sam ended with, “You have a good man.”

Then there was Kim.  Kim was the person who knew every problem in the world.  If there was some negative vibe, she would “share” with everyone how wrong it was.  Kim, sadly, lived in a pessimistic world.  Nonetheless, when Kim told me about Mike, there was NOTHING bad she could say about him.  She assured me, “If there were something wrong with him, I’d let you know.”  What a testimony!

Of course, there were others who voiced their opinions about Mike.  Most of it is positive. The only people who would say something negative about my husband are those who do not value honor, truth, family, etc.

Mike has been a great spouse.  I can’t imagine what he thinks when I lose my temper or when I get frustrated dealing with aspects of autism.  He listens and guides me.  He encourages me to take time away when needed–something I never dreamed of doing until 18 months ago.  Mike has been the source of peace and strength for me.  Going through life with him has been a great joy.  Even with autism.

I am glad my boys have such a wonderful example!  Even though it is Mike’s birthday, he has given us the gift of his love and life.