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!

I Want To Be Like My Big Brother

Ryan, Nick, Michael, Cameron

When the boys were in elementary school, teachers often had them write about whom they admired.  Without fail, the answer would be, "My big brother."

With four boys still in the house, many assume the younger boys mean Stuart.  While Stu is fun-loving, hardworking, and admirable, he is not always the big brother being referenced.  In our family, the big brother is the the tallest, ie 6'2".  Literally the BIG brother.  Michael.

Michael has been out of the house for a decade now.  He lives about a mile away.  Far enough to live his own life, but close enough to help.  Michael knows the challenges facing his little brothers, and many times he takes them to offer me reprieve.

My younger sons usually like going over the Mike's because they get to play video games, eat (gluten free) fast food, drink sodas, stay up late, and do nothing.  Then there's the flip side.  Mike keeps them busy.  He usually has a project or two going on.

This month they are making a bench out of an old bar.  The plans for the bench hang on the garage wall.  The wood and tools cover the floor.  The boys show me various aspects.  Each one voices what he likes (or doesn't like) about the project.  They like using the tools.  The loud noises--not so much.

Mike has a knack for solving problems, like getting the boys to work together on a project that is new to them.  They might complain at first, but ultimately, they have a good time completing the tasks at hand.  They then have a great sense of accomplishment.  Priceless!

Potential Job/Career Idea!!

Last year I found a group that meets monthly to help kids with autism transition into adulthood.  These meetings feature speakers or events.  Last night Ryan and I attended the meeting that debuted a family business looking to train and hire teens and young adults on the autism spectrum.

That is highly unusual.  Autism usually strikes fear is employers.  This business is SEEKING THEM OUT!

I was very hopeful, but also very suspicious.  My teens with autism want to be independent.  I want them independent.  With 90% of autistic adults unemployed, this could be such a blessing!  But who looks for autistic teens?  Well, we went to find out.

The speakers were from a family business--four generations in the business.  The fourth generation, the son, has Aspergers, which is a form of autism.  We heard the family history, and the success of the business.

These parents realized the success of their son was due to his symptoms of Aspergers--focusing for long periods of time, perfecting the details, wanting to work alone, etc.  I could see both of my sons fitting into this description easily.

I was quite impressed with the family's plan for their new business venture.  It covered everything from basic training to career opportunities.  My thoughts jumped:  job training; financial security; solid career; personal fulfillment--ideas that many parents worry about their kids with special needs.  This seemed to be an answer.

The only downside is that there is a cost.  Not that it's expensive.  But money is money.  Since this is a pilot program, there is no guarantee or track record of success.  And will my kids really like it?  Oh!  Moms can be so worrisome.

Well, Ryan and I are exploring the opportunities presented last night.  The timing may not be right, but this is at least an opportunity.  It's so important to have a path, a direction in life.  Even Ryan acknowledges that!  So, here's to some research and maybe a sale-able trade!

To My Sons' Grandparents--On Grandparents Day

Thank God for grandparents!! They spoil our kids.  They give forbidden treats behind our backs.  They let the kiddos stay up late.  Grandmas might even bake gluten free cookies for them.

For parents with kids with autism, grandparents can be more than the mellow, nice version of the people who raised us.  Grandparents can offer wisdom and reprieve to parents with shaken nerves and overtaxed brains. 

My Mom

The flip side is that grandparents can give suggestions (or criticize) and cause more stress, although their intentions may have been good.  Grandparents may only see their grandkids with autism occasionally and not understand the intricacies of daily life.  Visits can be bittersweet.  Taking time to chat can be a hardship, but constant routine is necessary in the life of autism.

My Dad

In my case, my parents are about 40 miles away--far enough to breath, close enough to help.  They know most of the tasks and goals of my sons with autism.  This last summer they took on the task of helping the boys passing their drivers permit test.  Goal accomplished.  With LOTS of patience.

Mike's Mom

My husband's parents live in another state.  Their visits are fewer.  They can see more distinct progression or regression; something that we might miss.  They always want to know what's going on, to help the boys.  Sometimes it's hard to describe everything concisely, but we try. 

Mike and his Dad

Both sets of grandparents help at family gatherings and events.  Loud noises and strange people always stress out the boys, so having those extra eyes and hands of grandparents can help ease anxiety--both of the boys and me.

I'm very grateful to both sets of grandparents.  Happy Grandparents Day!!

Another Chauffeur For Mom

Nick with Grandma

In late July Nicholas aced his driving permit test.  YEA.  He smiled and was very happy that he met his goal.  Nicholas didn't pass on the first attempt.  It took him a few tries.

The first two times he was devastated that he didn't pass.  He had studied for many hours, literally reading the book everywhere we went. I had to frequently tell him to leave the book in the car.

When Nicholas commits to something like this, he doesn't quit.  That can be quite scary.  Nicholas can work himself into an anxiety attack.  We have to watch him carefully.  We have seen Nick's face get red.  He has complained of chest pains and his heart racing.  We often have to stop Nick, so he will take a break.  He is a perfectionist.  Extreme focus.  I wouldn't be surprised if he thinks of the quote from the movie, Apollo 13, "Failure is not an option!"  Some day I can see him running a quality control center...

Anyways, three was the magic number.   He kept trying, and it paid off.  I love his smile!

I now have two teenagers learning how to drive.  My parents, my husband, and I have taken turns on the road with them.  It's quite an experience.  I don't need to worry about a cardio workout after some of these driving excursions.

My favorite part is that they have their permits.  We were never sure that they'd be able accomplish this, but they have.  Just goes to show we can never underestimate the potential of teens with autism.

My chauffeurs await!