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?

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!

Tennis Season Is Done and The Payoff

Nick and Ryan

Ryan and Nick finished their tennis season a few weeks ago.  They were happy to be done with daily practice.  I am thrilled they stuck with the sport through the entire season.

There were days when Ryan did not want to go.  “It’s hot,” or “I don’t feel like it.” Then there’s the classic, “I have homework to do.”  However, Ryan did continued to go.  On the other hand, Nick did not voice any complaints, but I bet the heat bothered him occasionally.  We strongly encouraged both of them throughout the season. Even the grandparents helped coach and practiced with them.  It is hard to say, “I’m tired,” when a couple of 70+ years are out on the court!

We stressed the commitment and the membership of belonging to a team.  They just couldn’t quit.  They understood, and finished they did!

They really enjoyed the sport.  As Ryan said, “I don’t have to run all the time.  There’s breaks.”  Nick wants to join the team next year.  “By then I’ll be really good cuz I’m going to practice lots.”  Knowing Nick, he’ll follow through.

From a mom’s point of view, here is the payoff for my kids with autism:  they are receiving texts inviting them to go out and play tennis.  Kids with autism have such a difficult time talking, socializing, etc., and it’s so easy for others to NOT invite them.  It saves everyone that uncomfortable, awkward situation of what to say or do.

Out on a tennis court, that situation is removed.  They play tennis.  They talk tennis.  It’s a basis for a friendship to grow.  The sport builds camaraderie between teammates, as well as the competition between opponents.  The teammates and opponents can be one and the same too!

My boys are happy as well!  Which makes Momma happy!

Autism and Scholarship: Party Time

Now we’re at the reception following the scholarship recognition ceremony.

Ryan and I hightailed it to the coffee line as the food line led to wheat laden food.  (Ryan is gluten free except for wheat that I grind–unprocessed/unheated wheat.)  At the coffee bar, we chatted a bit between ourselves and then with a few others we knew.  Out of nowhere, Ryan announced, “I’m going to talk with that girl.”

I reacted casually (?), “What girl?”

“THAT girl, in line.”

Wow!  OK.  I recognized her from elementary school.  When Ryan was home schooled, she made the effort to talk with Ryan.  Ryan always answered her questions, but never ventured to initiate his own line of conversation.  Well, today he did.  He held a conversation with her.  They included me.  I was impressed.  It was not too long when they walked away.  Without me.

Too cool!

Autism and Scholarships: Thrilling!

Yesterday Mike and I were absolutely thrilled to watch Ryan walk across the stage at his high school to receive a certificate.  This certificate recognized Ryan as a recipient of an academic scholarship.  There were moments when I doubted we’d get to this point.  Even applying for the scholarship had its moments.  I’ve described some of that in previous posts, so I won’t belabor “the steps” here.

Ryan’s response to the event really surprised me.

He was happy.  If you know Ryan, he doesn’t smile often.

He tried to hide his smile when he walked down the steps of the stage, but for once, he couldn’t hide his true emotion.  He smiled, well ok, he smirked.  He KNEW this was an accomplishment.  He LIKED being recognized.  Not comfortable. But liked.

New territory for Ryan.

After the ceremony, there was a reception.  News about that will come in the next entry!

Autism Humor

I noticed a while back that Ryan had a difficult time filling forms.  He can do the basic name, address, and phone number.  However, many forms want the information above or below the line.  With job and college applications, medical and insurance forms, etc, it can be really confusing! 

So I’ve been teaching Ryan how to fill out forms.  Today’s form was a fundraising order form for Cam’s little league team. Ryan did well with the form.  Onward we went.  Since this was a fundraiser, I had to pay for the items.  Hmmm.  The check presented another form.

Ryan felt confident.  Ryan filled out the amount and the date on the check.  He then looked to me.  Who was to receive the check?   I told him to look on the order form to find out who to make it payable to.  On the form it said, “Make Checks Payable To The Organization Benefitting From The Fundraiser.”

Guess who the check is made payable to?

Yeah, The Organization Benefitting…

Well, that’s if he didn’t ask.  I saw that Ryan was only seeing the literal meaning of the words, not the figurative meaning.  Once I explained it, Ryan filled out the check correctly.

Lesson of the story:  Never assume!

Autism and Interviews: Award -Winning!

Ryan is a finalist!  I received word late this week that Ryan is a scholarship winner.  I don’t know how much.  The amount will be announced on May 12.  Ryan tried to hide his smile when I told him.  Hence, no picture to show.  I think he was genuinely surprised!

Now we are focusing on what classes to take.  Ryan wants to take online classes, and only writing classes.  He also wants his own laptop, so he can write undisturbed.

We finally have a course of action!  Yea.

Photo credit:   http://www.flickr.com/photos/68751915@N05/with/6355220839/