Sunday, June 19, 2011

Father's Day

Dad and Mother on their wedding day, 1937.
Mother and Dad were married 69 years.  They grew up during the Great Depression and married a few years before World War II.

Dad served in the Navy and worked for the US Government after the war, retiring at the age of 59.  He worked hard to provide for his family and to send my brothers and me to college.

Dad and I circa 1975.
This is one of the few photos I have of me with Dad, because he almost always was the one behind the camera.

Dad on the golf course in the early 1990s
This is really how I remember my dad the best.  After he retired, he played golf every day but Sunday, until back trouble made it impossible to play.

It was only in recent years that I really understood how much my parents had been shaped by the hardships of the Great Depression and World War II, and how much they sacrificed so that their children would have a better life.  I wish I had told Dad how much he meant to me, how much I appreciated all he had done for me. He died when he was 92, and it was almost as if he had lived so long, I thought he would live forever!

If your father is still living, never miss an opportunity to spend time with him and to tell him how much he means to you!

Friday, June 17, 2011

Looking back

Ward at a state institution circa 1960

When I was growing up in the 1950s and 1960s, there were no special education classes in our public schools.  People with disabilities were, for the most part, invisible.  I remember one student in my elementary who had had polio and walked with leg braces and crutches.  I remember one student in junior high who was blind and had a guide dog, but I don't know what special services he may have had.  I only remember seeing three people with developmental disabilities when I was growing up.  There were a brother and sister who could frequently be seen walking to Oakland Park to go fishing at the small lake.  (I later worked with the sister when she was transitioning out of a state school.)  The other person with developmental disabilities I was aware of was a girl who went through high school with us.  I suppose her parents must have insisted that she be in school; she went to  regular classes and the only thing she could do was write a few letters of her name on a piece of paper and turn it in.  I don't think I ever heard her speak.

Where were all those kids and adults with developmental disabilities?  I occasionally heard adults talking in hushed voices about someone who had a son or daughter "with the mind of a 2 year old."  But these people were well-hidden.  At that time, most parents were advised by their family doctors to place their delayed children in state institutions, and since there were almost no services in the community, most parents felt they had no choice but to follow that advice.

In 1974, fresh out of college with a degree in history and no marketable skills, in the midst of a recession, I got a job as an attendant at the Denton State School.  With my vast experience of having seen all of three people in my life with developmental delay, I jumped in with both feet.  I loved the kids in my charge, about 15 boys, ages 6-13.  I taught them self-help skills, sang songs to them, played with them.  I knew their little idiosyncrasies and what would make them laugh.  Back then, state institutions were very, well, institutional.  All the residents of the dorm slept in one large room with several rows of metal beds.  The day room was bare except for hard benches along the walls, with a TV on a bracket up high on one wall.  The bathroom was a large communal bathroom, with a row of toilets, a row of sinks, a raised tub, and a shower.  The kids whose parents still came to visit them wore clothes their parents provided.  The others wore clothes that were sewn by prisoners in state prisons; the outfits bore a striking resemblance to prison uniforms, in kids' sizes.  I sometimes bought regular clothes for some of those kids, and my dear mother sewed many lovely dresses for the girls on the neighboring dorm.  As much as the other staff and I tried, it was still an institution.

Because of this experience, I am deeply affected when I see folks with developmental disabilities out and about in our communities today.  When I see them out eating or shopping with their families, watch them play basketball or run track, see them pursuing their interests like art or dancing, see them working at the grocery store, my heart soars!  It is so moving to me, to think what a fundamental change has occurred in my lifetime.

Monday, June 13, 2011

Revisiting Tucson

From that dark day in Tucson, I have been personally touched by the shooting of Gabby Giffords.  Like most Americans, I hoped against hope for her survival and have cheered her amazing progress in rehabilitation.  But I also felt a personal connection to the events because of my sons, one of whom had a traumatic brain injury like Gabby, the other of whom is schizophrenic like the shooter Jared Loughner.

Like Gabby, my son Marcus had damage to the left side of his brain, resulting in language difficulties and right side weakness/spasticity.  And, like the congresswoman, he demonstrated the same drive and motivation to overcome his disabilities.

Yesterday I woke up and checked Facebook, and the first thing I saw was the new photos of Gabby, the first since the shootings.  The sight of her smiling face brought tears of joy and relief to my eyes!

With the release of the photos, little notice was given to the other news from the shooting.  It was reported on Saturday that Jared Lee Loughner's lawyers had once again filed a request with the court that they be notified if the hospital where he is being treated attempts to medicate him.  Even though he is so psychotic at this point that he cannot even cooperate in any way with the lawyers, they argue that the medications pose a risk to him because of their side effects and that they would hamper his ability to cooperate with them in his own defense.  They also argue that, since he is so out of touch with reality, even if he agrees to be medicated, he cannot actually give informed consent.

I found this article so disturbing!  It is quite obvious that the only goal of the defense attorneys is simply to keep Loughner out of the courtroom indefinitely.  They are acting in his best interests only as a defendant, not as a person.  Making sure he stays in a severe psychosis, unable to communicate or to know what is going on outside of his head, is in his legal best interests, but I think most people would agree that it is not in his best interests as a person.  I think it is very unfortunate that Loughner does not have a legally appointed advocate, who would be able to act with legal authority in Loughner's  personal best interests, as a person who is very, very ill, rather than as a defendant.  I know that most people don't really care about what would be best for him; they only want him to regain his faculties so he can go to trial.  But, even though he is a person for whom it's hard to feel any sympathy, I can't help but feel some for him, because I know the anguish, the torture, the hell, that Gabriel lives through when he is actively psychotic.  And I know that Jared Lee Loughner must be living in that same hell.

So it was a weekend of both good and bad news relating to the Tucson tragedy.  I hope that Gabby is soon able to return home and continues her remarkable progress.  And I hope that someone will do what is right for the shooter.

Wednesday, June 08, 2011

Another idea for a hands-free card holder

Over the years, my kids have enjoyed playing cards, but, because of spasticity and/or incoordination, holding the cards was often an exercise in frustration.  So we came up with this simple solution for a hands-free card holder.  We simply found a shoebox or other box with a lid, turned it upside down, and placed the cards between the box and the lid, like this: