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...

Getting Through A Tough Week

When you're feeling like you're drowning in life, don't worry.  Your lifeguard walks on water.

I wish I could give credit to whomever said this quote.  I don't remember where I read it, but it sure has been a reassuring thought through this past week.  The Good Lord provides what we need, when we need it.

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.

Home From Surgery

Surgery done.  Outpatient basis.  Am home.  Whew!

This all started about 6 weeks ago.  Yep, I noticed a lump, bump, or thing on my right shoulder blade.  It was on top of sore muscles--muscles that are always tight when I'm stressed.  (Connection? Hmm.  Would not be surprised.)  There was no pain, no redness, no itching.  Just this lump.

Surgery time! I was awake through the whole procedure.  After the local anesthetic took effect, I felt nothing but a lot of tugging and pulling.  The surgeon described what she was doing.  Not a bunch of detail, enough to keep my imagination in check. The incision is about 3 inches long, so this tumor was not small.  After all was done, I saw the tumor.  Gnarly thing.  A big clump of tissues banded together.

This lovely collection of unwanted cells will be sent to the lab for testing.  The doc is fairly sure that it is benign, but I will wait for official results before closing this chapter.  I don't want to think it's all done, only to find out it's not. 

I asked how long it had been growing.  The doc estimated 5 years.  She is not sure how it remained hidden, but it did.

It's been a few hours now.  My right arm tingles.  Pins and needles kind of pain.  Think of the funny bone being hit just right; then the arm feels a tingling paralysis.  Muscles are tight throughout the neck and shoulder.  Other than that, I'm fine.

Just have to wait for those lab results. In the meantime, I get to sit and watch a movie marathon from my recliner.  Life is good!

Prepping for Surgery

I tried to describe this experience to a friend:  The "something that may be cause for concern" is a "nothing to worry about" that "needs surgery".

I've seen a few healthcare professionals recently.  At every appointment, I'd hear the same tip-toe dance.  As the medical visit progressed, the doctor or nurse became very reluctant to speak.  The above quotes were uttered by these medical professionals, just not how I have strung them together.

This reminds me of all the testing Ryan went through before being accurately diagnosed with autism.  Ryan was two years old when we started seeking medical help.  At the age of 5, he was initially diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), meaning there was something going on, but the docs didn't have a clue.  As the years passed, ADD, ADHD, OCD,  and speech delay were added to the list.  Doctors couldn't agree.  Just for humor, I added ABC and XYZ to the list.  When Ryan turned 7, he was finally diagnosed with autism.

I have since learned that medical and educational professionals like to "ease" parents into a potential diagnosis.  They seem to think that is acceptable, and we parents appreciate the steps leading to a devastating reality.  NOT TRUE.  At least, in my case, I'd prefer to be told the worst case scenario, and then ease up if necessary.  Each diagnosis that Ryan endured broke my heart more and more until it was finally shattered with the diagnosis of autism.

So now it comes to me and a lump.  Each nurse or doctor initially told me not to worry.  However, when each heard my family history of "lumps", the demeanor changed.

My father has survived several types of skin cancer, including melanoma.  He has also survived lung cancer.  Twice.   The last time he was given 4 months to live.  That was 13 years ago, and he is alive and well.  I call him a walking miracle.

So out will come this lump.  I told my sons individually.  Each reacted differently.  Stu freaked.  Ryan and Nick accepted it quietly. Cam was on the phone, telling his friend all about it. They understand that, as of now, it's just a lump.  When it comes out, it will be sent to the lab, we'll find out if it is something more serious.

I am still not worried about me.  I am concerned about my sons and being to progress without guidance, so the focus this summer will be to give them opportunities to problem solve and be independent.  Of course, all parents strive to teach their children to be independent.  It will just take a little longer for my boys with autism.  With or without me.

Autism Concern: When The Parents Are Gone

Here's to life!

What will happen to my kids when I'm dead and gone?  That's a question every parent with a special needs kid asks.  It's a legitimate question.

I see how people have treated my kids--both bad and good.  I have seen and heard the teasing, the rolling eyes, the ignoring, the avoiding, the comments in relation to my boys with autism.  I have seen the pain in my boys' eyes caused by others.  The flip side is the support, the protection, the friendships offered and given to my boys.  I have seen my boys' joy and laughter.  It fills their entire beings.

As a mother, I doubt anyone else will ever love and understand my boys as well as I do.  I hope one day to be proven wrong.  Nevertheless, I see reality and cringe. 

This past year Mike and I have started to address the reality of our mortality.  We have gotten needed documents in order.  We have named who will "parent" should we die sooner than expected.  We've even made burial plans.  Not fun topics, but necessary.  Of course, our focus is still life--living the best life we can!

I'm glad the "dead stuff" is mostly done.  This last week, I met "my future".  I never anticipated hearing "go see a specialist" and "surgery Monday".  Yet, I did.  I am not worried about me.  My kids?  Well, that just takes me back to the beginning.  What will happen to my kids when I'm dead and gone?