Your Boys Give Me Hope

Ryan, Nick, Cam.  A few years ago.  Windy beach day.

Last Friday, I was shocked.  I was leaving church when an elderly lady stopped me to ask a question.  "I hear your boys have a touch of Aspergers. How are you working with that? "

Several thoughts went through my head at once, yet I wanted to answer this woman concisely but thoroughly.  I must have hesitated too long.  She continued, "My grandson has been diagnosed with autism."

Once she said that, I answered, "My boys have autism.  299.0.  No aspergers.  No high functioning autism.  Full blown autism."

Her face reflected astonishment.  "I know your boys.  They are so polite, and they talk to me."

Now it was my turn to be stunned.  I am always surprised when someone outside the family says that my boys "talk" with him or her.  How "talk" is defined by each person varies, but the social interaction of any sort is remarkable.  That makes me smile.  My boys are conversing to some level--independently.

Wow!

We continued our discussion briefly.  I outlined the therapies that have taken place in the last ten years.  I described the sensitivities and issues my boys faced back then, like non-communication and intolerance to transitions.  I mentioned the prescribed meds and the switch to a clean diet.

At the end of our five minute conversation, this woman's face showed some sign of relief.  "Your boys give me hope for my grandson."

That just made my day.  I was almost in tears.  I remember being in her shoes, hearing the diagnosis of my boys.  I know the long road that lays ahead of this boy and his family.  I am glad that his grandma can tell his mom that she knows some boys who are progressing well, despite autism.  Or better yet, with autism.

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!

Guiding A Young Adult With Autism

“Six month ago, I was (somewhat) concerned about my 19 yr old, that once graduated, he'd have nothing to do. Well, 3 computer classes (and tutoring me in those), photofinishing classes, Japanese classes, writing his book... and now he wants to resume martial arts. AND yeah, this is a young adult with autism!!! I'm in AWE. (he's doing well thus far!)”

I posted that “status” yesterday on Facebook.  It’s a very positive statement.  Sounds successful too.  And it is.  However, this “status” is a step along an unknown road.  What I didn’t write is how Ryan arrived at this point.  The steps were many.  Sometimes painful.  Never easy.

Tomorrow I’ll try to outline the reality of steps we traveled.  One must keep in mind that Ryan is not alone on this path, although now he is in much more control.  That is mixed blessing!  

As parents, we face this is a strange, new road:  a young adult with autism.

Today's Gem

My 17 year old son asked me a simple question this morning, "Mom, since I've been working so hard this week, could we go get some coffee?"  (Do know that, when the boys want to go out, the boys pay their own way.)

Phrased that way, it was difficult to say no.  In fact, I agreed.  "Let's go," I responded.

When we arrived at the coffee shop, Nick was ready to order.  He paused, and turned around.  He looked at me with a slight hesitation.  Then he blurted out, just so I could hear it, "I want to save my money and use yours."

I started laughing, but I realized we were holding up the line.  It was not the moment to discuss anything, which I knew Nick would want to point out his logic.  Quickly, we ordered, and I paid for the drinks.

When we sat down, I explained to Nick that yes, he has worked hard this week, as always.  However, that does not entitle him to use my money.  (Yet, I did pay.)  I told him that he will owe me the money when we get home.  And yes, he did pay me back, with a silly grin on his face.

It was just a funny moment.

He understands the concept of saving money, but it's ok to spend Mom's money instead.  Or maybe there is more underlying his creative thought process.  Sly.  Very sly...  In either case, he made my day.

So many people believe that teens with autism don't think outside the box.  Well, they do!

Fighting For My Medical Records

Last week I had to contact the surgeon who removed the tumor because the tumor has returned.  I found out that this surgeon is no longer at the office.  I was never notified that the doctor was leaving her practice.  I was given a number of her answering service and told that my message would be passed on.

The next day I called again and was more specific about the urgency of receiving a return call.  I was immediately connected to the doctor.  She seemed rather cavalier to learn about the tumor.  She conceded, "It certainly sounds like it's back."  This doctor referred me to another surgeon and said she'd be glad to release my records to him.

I called the office again and asked for my medical records.  The person I spoke with said that the doctor had taken all of her records, and the doctor would only release them to another doctor.  I said that was illegal.  I could hear a sigh from the other person, and she said, "You will have to take that up with the doctor."

I cringed.  Why is this doctor not willing to give her patients their medical records?  With all my encounters with doctors regarding my boys' autism, I have never been denied medical records.

I read the state medical board website which confirmed that this surgeon could not withhold my medical records, especially since this was a case of "continuity of care".  I studied and memorized several phrases from the website.  I sent an email using several of these phrases and formally requested my records in writing.

The next morning I called the answering service.  I emphasized to the person taking my message to include "illegal to keep my medical records".  The call ended, and I was closing my flip phone when it started ringing.  The surgeon herself was on the phone.

I explained I wanted my medical records, and she could not withhold from me legally, especially under the "continuity of care".  She gave me several reasons why she wouldn't release my records.  This surgeon obviously doesn't know me.  I am not going to take no for an answer.

The first excuse was, "I'm treating all my patients the same..."  I cut her off.  I didn't care.  I repeated, "It's illegal for you to withhold my medical records."  She was willing to release my records to another surgeon or primary care physician.  For every excuse or reason, I simply repeated the mantra "It's illegal."  She finally agreed to fax them to me.

The next day she called me to say that she couldn't release my records without a written consent.  I told her about the email.  She looked and verified that she had it.  Within two hours, my fax happily printed out my medical records.

I remain suspicious as to why she didn't want to release them.  I read them and found nothing weird or unknown.  I am disappointed that I had to spend the time and energy fighting this battle to get my records.  This doctor stole time and energy that I could have spent with my boys.  This doc will never understand the impact of her actions.

Tumor Again?

This tumor that was removed has decided to visit again.  It is growing under part of the incision and extends well beyond.  I am not a doctor, so this is my simple, humble opinion.  It feels and looks like the tumor that was removed; however, the speed in which this has developed is much faster.  So am I positive it's a "tumor"?  No, but if it walks like a duck and acts like duck, chances are that it is a duck.  I do like some sequels.  This is one I could have skipped.

Whatever this thing is, I would not be surprised if this is related to stress.  Lots of people "encourage" me to get rid of the stress in my life.  Sure!  I am not a fan of stress, but stress is innate to a mom of special needs kids.  It's just part of the terrain.  It's not like a computer where a person can hit the delete button, and it's gone.

Life!