11 posts tagged “autism”

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We finally found a barber to cut my son's hair, so it's not like this any more.  And it only took three of us to hold him.

Pennsylvania has become the first state to receive a waiver from the federal government to be able to use Medicaid to provide services for adult autistics.

This is a big deal.

I haven't posted anything about my son lately, as we have been betwixt and between.  Just to catch y'all up to speed, my son is a "low functioning" autistic, who attends an autism support class in a public school here in Philadelphia.  The school is a K-8 school with about 250 kids.  There are three(?) autism support classes, with a total of a little over 30 kids.  My son's teacher has over 30 years of teaching experience, including 13 years of teaching autistic kids exclusively.  It's about as good as it gets in the public school system here.

Unfortunately, it's not enough for my boy.  A few months ago, the team got together, and decided that he needed placement in a private school program.  The school district wasn't too happy about that, and tried to fight.  But even the school district employees (teachers, speech therapist, school psychologist, etc.) backed us up, so they had to agree.  Side note:  I see the willingness of the school district employees to back us up as directly related to our willingness to treat them as fellow team members of quality, rather than as potential obstructions.  Respect given often leads to respect returned.

We have finally winnowed down the list of potential schools, in concert with the school district, to four.  Two of those schools have stellar reputations, and we will be visiting them first.  Those schools cost a minimum of $42,000/year, not including the cost of transportation to/from school or the cost of his TSS.  All of that will be paid for by the school district and the state.  Hallelujah!

I will post more, as we visit schools and finalize everything.  It's been a long slog, and it ain't over yet.  But my boy is going to have the best education available to him.  And I didn't even have to pull my political connections out of my pocket.  We'll save those, just in case.

Went to my neighborhood today, and saw that Cat had a rough night.  Here's her latest post.  Aaron, Cat's son, has been having major epileptic seizures.  He's in the hospital, and she has camped out with him.

If you're the praying type, shoot up a prayer for Cat and her son Aaron, and the rest of the family.  And pass it on to your friends who are the praying type.

Oh, and if my memory serves me correctly, she's at the Children's Hospital in Texas.  Maybe somebody local can bring her a decent meal.  She's been living on ramen for days.

Courtesy Ben Harper and the Innocent Criminals:

I occasionally read a blog on line called Autism Vox.  Today, the writer posted a fascinating story on a software application from Google, that many autistic kids have loved working with.  Here's the post, with a video explanation of the software.

Lisa Richette, whom I got to know through her son Larry, passed away from lung cancer on Friday night.  She is one of the few people I have known personally who truly deserved the accolade "Larger than Life".  She was a true giant, as the following obituary will show:   Lisa Richette

Judge Richette had a reputation for being a fierce advocate for children.  Just a few months ago, she and I were talking about my son, who is autistic.  She had written a book in the late '60s entitled The Throwaway Children, about the neglect of children she saw the the justice system.  She told me that she was intending to write a followup, and to include a chapter of autistic children.  I will miss reading that.

Lisa loved opera, and I can think of no better opera than Norma, an opera about a strong woman who loved her children.  Here it is, sung by a strong woman, Maria Callas:

Maria Callas - Casta Diva, Paris, 1958 (Parte 1 de 2)

Maria Callas - Casta Diva, Paris, 1958 (Parte 2 de 2)

Well, I had hoped this day didn't become necessary.  But it is time to force the School District to pay for intensive private-school instruction for Evan.  He's in a school which has several autism support classes (32 students), his teacher is experienced, passionate, and caring, his TSS worker and his behavioral specialist both call Evan "my baby".  It's not enough.  He needs one on one, he needs intensive speechwork, he needs the Rolls Royce program.

  Why?  Well, he's been in this class for two years.  So have the other kids, some of whom I've known since the special program he was in before this.  They have all progressed significantly.  Evan hasn't.  He's non-verbal, not toilet-trained, and sensorily overwhelmed.  He's also very smart and opportunistic loving and social.  I see the potential locked behind those eyes, and I can't wait any longer.  And now everyone else is ready.  The teacher, the TSS, the behavioral specialist, and his advocate, who strikes fear in the heart of district employees. 

Nobody has failed to give the effort.  But Evan deserves to be able to unlock all that I see shining behind those eyes.

So, it's time for war.  I expect a short one.  I have spent a long time lining the ducks up just right.  But you never know.

Wish us luck.

In counterpoint to the earlier post, we just went through our final weekend before school.  My boy decided to end summer with a bang. 

First, the paper.  Evan has been in the habit, while walking, of reaching down and picking up leaves, which he then crumbles and throws in the air.  I have learned how to walk with him and hold his hand in such a way that he doesn't pull out my back, or pull away from me while doing this.  Recently, Evan discovered that, if he tore paper up, he could throw it in the air to get the same effect inside as he gets with the leaves outside.  Messy, but not a huge deal.  I generally was letting him do it, so long as he cleaned it up afterwards.  Then he figured out that books have lots of paper in them.  Evan would start out flipping through pages, and then, when our attention wandered, he would rip pages out.  Not good.

Saturday, I woke up at a hair after six, as I heard Evan rustling around on the couch.  I walked over to see what he was doing.  He had my glasses, and had just completed the process of twisting one of the appendages off.  Thank God for Scotch tape.  Sunday, just before we were to leave for a picnic, Evan snuck upstairs.  In the very short amount of time it took for me to get upstairs, he had opened a bottle of baby shampoo, and was assiduously spreading in all over the library floor.  Hard wood, not carpet, at least.  Then he fought me like a tiger to avoid getting in the tub to be rinsed off.

Last night, he went to sleep at 9, and slept through the night.  That's what one day of school does.  Thank God for school.

What television show stands the test of time?

Mr. Rogers Goodbye

This is not a clip from Mr. Rogers Neighorhood.  But it shows why it stands the test of time.  No single person, perhaps other that Jim Henson, has treated his audience with more respect, dignity, and love.  The fact that his audience consisted mainly of young children makes that all the more special.

My son is autistic.  Most TV shows are much too sensorily overwhelming to be of much use to him.  Even childrens' shows.  But whenever I put Mr. Rogers on, sadly now only in reruns, he quiets down, sits down, watches and listens.  It is as if he knows how much Mr. Rogers cares about him. 

And Mr. Rogers was never afraid to talk to his audience about touch subject.  Death; divorce; adoption; disabilities; war; poverty.

Not to mention the unconditional acceptance of all people which was a special gift of his.