A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in March, 2011

MacNeil Returns to ‘NewsHour’ for Autism Series

Veteran journalist Robert MacNeil will return to the “PBS NewsHour” in April for a six-part series of reports on autism, the program said Tuesday.

The series will mark the first time Mr. MacNeil, who stepped down as the program’s co-anchor in 1995, has reported for the “NewsHour” in a decade, although he has continued to do occasional work for PBS in recent years, and excerpts of some of those programs have aired on the newscast.

What drew him back for the autism reports was a personal tie; his 6-year-old grandson Nick has autism, “NewsHour” said in a release, adding that it was the first time in Mr. MacNeil’s five decades as a journalist that he has chosen to bring his own family into a story.

The reports are being produced by journalist Caren Zucker, who also has a 16-year-old autistic son.

“NewsHour” said the series, which is scheduled to be broadcast April 18 through April 26, will profile the experience of children with autism and its impact on families, including Mr. MacNeil’s. It will also explore the medical research into causes of autism and the public policy issues it raises.

Mr. MacNeil, an NBC News correspondent earlier in his career, started anchoring a half-hour nightly newscast called the “Robert MacNeil Report “ for PBS in 1975. The following year, it was renamed “The MacNeil/Lehrer Report” when then Washington correspondent Jim Lehrer joined the anchor desk.

The program, which has been honored with every major broadcast journalism award, continues to be anchored by Mr. Lehrer. It became the “NewsHour” when it expanded to an hour in 1983.

 

 The annual IEP, constant source of false hope and missed opportunities.  Still, it does provide the opportunity to benchmark your child’s progress, whether it’s substanica or in my case, maddingly slow.  My better half asked me to write down some notes, but I found myself simply using it as an opportunity to journal about it.  Of course, that’s what this bully pulpit is suppose to do as well, so with no futher ado, what follows are my thoughts:

As Michael has withdrawn, I see the headphones being used more for protecting him from sound rather than obtaining sounds.   Since his operation, I haven’t heard him play the CD Player/iPad as loud as he used to.  I wonder if better hearing has made the world even noisier/scarier for him?  It seems to me that Michael doesn’t sing as much as he used to.  I can’t recall the last time he belted out “Take me out to the ball game”.  Mostly, he speaks very quietly.  The 1st goal would be to stop his retreat and help bring him back to where he was.   Having Michael singing and smiling again would be wonderful!  Perhaps it’s all about empowerment?  Or simply feeling some sense of control over his environment?  Not sure how to make Michael feel brave again.

Wouldn’t it be great is someday, science finds the needle in the haystack which is the causation of autism.  The news would probably be more of a wimper, because it won’t be until the day that chemists are able to take the information and produce drugs specifically based on the new breakthough.

and wouldn’t it be great, if the discovery has already been made and the name is SHANK3..

Autism Gene Studied in Lab MiceMarch 21, 2011 4:34 PM
By Stephanie Sajor
Source: Comstock/Thinkstock

Autism traits were reproduced in lab mice by mutating the gene associated with the behavioral disorder. Scientists say the finding of the gene could lead to more advanced treatments for autism.

The gene, called SHANK3, was found to be related to two common autism traits: compulsive repetitive behavior and avoidance of social interaction.

Read more: http://www.thirdage.com/news/autism-gene-studied-lab-mice_3-21-2011#ixzz1HMl8JMoQ

To be honest, I was hoping my boys would turn out to be savants, but that’s not the case.  Still, as Temple Grandin once said, science is advanced by the autistic population.

Here’s the story of a 12 year old physics prodigy out of Indiana that makes Doogie Howser seem like a lightweight.

A few months ago I had written about how we had finally gotten our bed back.

Well, I feel like a Libyan rebel who’s been repelled out of Tripoli.  The boys, armed with their superior numbers and fire power, have once again taken over the night time routine.  To make matters worse, Sean’s OCD has been on complete overdrive at nighttime.  Now, he has a new ritual that requires him to begin the sleeping process in the downstairs family room and only until he is tired and frustrated does he consider moving to his upstairs bedroom.

And then he sleeps like a spider on a web.  The slightest move or noise and up he springs.   Plus he has this new need to keep the balls of his feet under constant pressure all night long.  It’s only about 4am when he finally allows himself to fall into a deeper sleep that he lets his body uncoil and truly relax.

God, I hope we qualify for the Seaside STX209 study.  I think Sean would GREATLY benefit from anti-anxiety medication!  And God knows his father can use some relief even more!

It seems at least once a week there is a new article about the iPad and how intuitive kids in the spectrum find it to be.   “Finger flipping”, which is the navigation path of the iPad is 2nd nature to my son Michael.  He continually finds new links within iTunes and the other apps to help him visualize his music as he plays it.   He was watching Roundabout the other day, with the original Roger Dean artists drawings and reading about how the lrics came to Jon Anderson as he was driving to the studio that day.  I’ve been a YES fan for 40 years and never knew the origins of that song, so it was very cool for me to read over his shoulder. 

It seems we all should be demanding iPads for our kids at school.