Thank You For Your Consideration

My Nick

So, the other day I asked the boys if they wanted to come with me to run a few errands.  I was going to end with dinner out, but I didn’t tell them.  I was curious if they’d be willing to help me out.

The responses I received were mostly typical.  Ryan and Cameron chimed in unison, “NO!”

Nick, however, responded with a surprising response, “I thank you for your consideration, but no thank you.”

My mouth dropped.  I was stunned.  That is the most Nick has put together without hesitation and rehearsal.  Not only that, but how courteous.  How polite.  I asked him if he had heard that somewhere.  He shrugged his shoulders.  I am not convinced, but I will let that be his secret!

I smiled.  AND I thanked him.

I ended up doing my errands alone, but everywhere I went, I had a smile!  My boys with autism CAN answer with more than a one word answer spontaneously.

Dinner out would wait for another day.

Realizing My Boys Have Conquered Their Sensory Issues

Yesterday Cameron and I cleaned out the “sensory section” in our pantry.  I purchased these items years ago when my boys had several sensory issues. I put everything on my kitchen counter.  To my shock, the entire counter was covered with various things:  feathers, pipe cleaners, clothes pins, felt cloth, yarn, beads, corks, wood, and many other things.  I probably could have opened a small craft store!

As I looked at each object, I remembered why I purchased it.  Most items had different textures.  Some items helped build dexterity and strength.  Others helped with fine motor coordination.  My memories were bittersweet, going back at least ten years…

Although my youngest three have autism, all four of my younger boys had sensory issues. Their issues varied:

Stuart couldn’t stand the feel of grass under his feet.  When we went for a walk, he shrieked when sprinkler systems went on.  We’d have to cross the street to avoid the sprinklers.

Ryan hated to be hugged; he didn’t like to be touched at all.  He refused to wear jeans because the material was too rough.  Sounds were painful.

Nicholas couldn’t tolerate anything on his arms, legs, and feet.  When the weather was cold, getting him to wear appropriate long pants, long sleeve shirts, and shoes were next to impossible.  Light bothered him as well.

Cameron loved to bang his head against a concrete or tile floor.  Bang, bang, bang…

None of them liked dirt or shaving cream on their hands.  Sand was a no-go, making a trip to the park or beach futile.

I remembered the physical therapists and occupational therapists used these items in front of me to help my boys, quite often with no or minimal success.  We tried week after week.  Slowly my boys got used to some textures.  Others took years.  So I put them away.

Until yesterday.

Now my boys are too old for these things, and they have no interest.  They also don’t need them.  THAT IS A HAPPY THOUGHT.  The sad thought is that I missed out so many other things; things that I hoped to make with them.  Oh well.

Although these items represented a small fortune, I didn’t regret spending the money.  Everything contributed in a small way to their current status of today.  Today my boys can go anywhere with peers, and function quite well.

So Cameron and I gave all of these items to a nearby family.  It was good to see the smiles are the youngsters’ faces.  They saw all the potential projects they could make.  Life is good!

Ryan First Driving Lesson: Thrilling and Terrifying

Ryan’s first driving lesson with Gpa

For two years Ryan has not wanted to drive.  “I don’t want the responsibility.”

I couldn’t understand Ryan’s decision.  When I was 16, I couldn’t wait to drive.  I was in line at 8 am to take my driver’s test on my birthday.   Within that hour, I had my license in hand and ready for freedom and independence, or a semblance thereof!

Back to Ryan. For two years, Mike and I would push for him to take the test to get his permit; then we’d relent.  We weren’t sure if it was lack of confidence, procrastination, or fear that kept Ryan from pursuing this opportunity.  Ryan wanted independence, but not enough to get his permit.

Well, Ryan’s grandparents took on the task this summer of working with Ryan to get his permit.  At this point, he needed a gentle push, and then we’d see what happened.  For a month, Ryan studied the driving handbook and was tested.  The first try was unsuccessful.  The second try was.  Yea.

Ryan had his first driving lesson with Grandpa.  Ryan’s response, “It was thrilling and terrifying at the same time.”  Of course, he really couldn’t suppress his smile.

I bet Grandpa would agree with Ryan’s assessment of his first lesson!

Will The Dog Melt?

Yesterday the temperature reached 118 degrees.  Today we are looking for a cooling trend of 115.  This weather reminds me of a question my son asked before we moved to the Southwest.

Back in CA, my son, then 8, wanted a dog.  He begged us to get a dog.  We said no, especially with the impending move.  My son was not deterred.  He persisted.

Once he asked when my husband was on the phone with me.  My son begged, “PLEEEEASE, can we get a dog?”

I gave the phone to my son as I was tired of saying no.  He could ask his dad!  I could hear my husband’s voice, “Nope.”

My son’s second question came, “WHY?”

My husband responded, “It’s too hot in the desert for a dog.”

I could see the wheels turning in my son’s mind.  He frowned.  Then a light bulb turned on!

He said, “The dog will melt?”

We suppressed a laugh, but let it go for the moment.  When we finally moved, we did explain that a dog wouldn’t melt.  I don’t like dogs in the house, and it is too hot to keep a dog outside during the heat.  My son then understood why we didn’t get a dog.

photo credit: http://www.flickr.com/photos/allert/

Autism: Paper Never Ends

I’m drowning in a sea of paper.  I sort.  I file.  I purge.  I shred.

I know science says that spontaneous generation doesn’t occur, but every mom of a special needs kid knows otherwise!

I invest hours maintaining files, and I never seem to keep up.  My desk has files to be filed.  My table has mail to be sorted.  My counter has paper to go somewhere…

It’s a thankless job, but worth doing.  Every step of every process demands proper documentation of diagnosis and prognosis.  Schools, doctors, insurance, and government might help IF the paperwork is complete.  The proper paperwork must always be filled out before anything is done.

Yesterday I talked with a counselor at the local community college regarding the potential enrollment of my autistic son.  The first words out of his mouth were, “Do you have proper documentation?”  I laughed, and I said, “How many years of documentation do you want?  I have every assessment, psychological evaluation, doctor’s notation, specialist’s recommendation, and school IEP since my son was three.”  Silence followed.  He responded, “Well, most people don’t have that much. I guess just bring the most recent.”  Easy to do.

So as I keep this need for documentation in mind, I continue to sort, file, purge, shred. 

Happy 23rd Anniversary

Mike & Sheryl:  23rd Anniversary

Time.  We either embrace it or endure it.  That, of course, is a matter of attitude.

My husband, Mike, helps me maintain a positive attitude.  I’ve known him now for half of my life.  Today we celebrate our 23rd anniversary.  It’s been a rough road, but no matter what we’ve experienced, we have done it together.

With our kids getting older, our lives will be evolving into another sphere.  Adult kids.  Adult kids with autism.  Not too much is written about this facet of autism, let alone marriages THRIVING with adult kids with autism.

Mike and I are taking time to be a couple.  Twenty-three years of marriage doesn’t just happen.  Lots of communication, understanding, patience, forgiveness, prayer, etc. have contributed to our happy life.  Not every second is happy, but we persevere at those moments.  Commitment.

Whatever happens, we’re in this life together.  Cheers to whatever comes this year!

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

Tumor: Stressed Induced?

I received the call from the doc’s office on Thursday afternoon with the lab test results.  The tumor was benign.  YEA.  Ok.  Many questions remain unanswered.  How could this tennis ball size tumor remain hidden for 5 years?  What caused the tumor in the first place?  Could it have been prevented?  These all lead to this question:  Am I taking care of myself?

I highly suspect this tumor is the result of stress. It was growing over muscles that are constantly tight whenever I am stressed.  And when am I not stressed?  When is any mom not stressed?  By nature of motherhood, something always requires attention.

Then add on special needs kids.  Therapies, diets, agencies, doctors all demand attention, but the children themselves are the priority.  And don’t forget the marriage.  The spouses try to squeeze in a few minutes of communication here and there!

I have had some people ask me when I get down time.  HAHAHA.  They usually figure out that there is no such thing for me.  Even if I am sitting, my thoughts don’t stop.  When I sleep, I often wake up, processing information because I can finally think without being interrupted.

Am I stressed?  Yep.  Some doctors have told me that I need to remove whatever causes stress.  Well, unless I can walk away from life, I don’t think I’ll remove it all.  This will be a work in progress.  Of course, I am much more aware of how stress can impede my health…

Autism Concern: When The Parents Are Gone Part II

Will my kids be able to function independently when I’m gone?  Another wonderful question parents of a special needs kid faces.  I’m not anticipating leaving the Earth any time soon, but this question needs answers.

As parents, we can have all the legal and financial documents in place, but those papers don’t address the real concern of what will happen to our kids.  HOW will they live?  What are their actual abilities?  Even more important, how confident are they?

This summer I am focusing on educating our autistic teens on real life skills and issues.  Everything from junk mail and scams to emergency situations.  My goal is to get them functioning independently NOW.  Not when they’re older.  Not when I’m physically or mentally gone (ok that occasionally happens already).

There are the obvious life lessons of budgeting, shopping, cooking, cleaning, housing, schooling, etc.  There’s also the medical and government agencies that requires mountains of paperwork.  Details.  Follow through. There are many steps in each of these issues.

For example, transportation–can my boys drive? My parents have volunteered to help in this endeavor.  Getting a driver’s permit, let alone license, is paramount to independence.  We’re not sure the boys can handle driving, but we need to find out. If they can’t, then getting them familiar with public transit will be the next step.  Finding support systems and training is vital, and they do exist.