Sunday, September 16, 2012

Another Trip for Bil

Bil and his Mom are staying with his brother in upstate NY this weekend.

He did some eating out, visited some local attractions and even took us having to switch to a different restaurant last minute well.

Didn't hae much to say but I have a feeling he enjoyed being away from home with family.

My mother in law, right now, is the worry.  The last time we visited her over Labor Day she seemed to sleep more than normal.  Her hearing also has definitely deteriorated since spring.

I wonder how much longer she will be able to drive, and with that, Bil will be stuck in the house.

I hope he enjoyed this latest visit up to our area, because it may be a while before he can get out.

Monday, September 10, 2012

Bil at the Farmers Market

Bil loves to shop.  He loves to get out of the house.

So when we needed to go shopping in our recent visit, he came right along with us.  He even accepted an additional stop without much anxiety, which I was happy for.  In fact, it surprised me a little.

We took him to a farmers market.  I wouldn't be surprised if that was the first farmers market he went to.  Fortunately the market was a pretty small one and not too crowded.

He patiently stayed off to one side while we visited several booths and made our selections.  I can guarantee that he was recording, with his mind, everything that he saw.

At home, he took some of the purchases out of the car and walked into the house.  He is used to helping his mother by carrying her groceries, so that has become part of his routine.

Bil doesn't like to eat veggies - but his Mom has figured out a way to get him to do so.  The secret ingredient is something he loves, and can be shredded and put on veggies.  Bil also ate an ear of corn that we ate at the market.

This sounds like just a simple "What I did today" essay. But, with Bil and his autism, it is a lot more than that.

Will we ever know what it meant to him?

Sunday, September 9, 2012

No Concrete Answers

Our visit with Bil went well, except for an interesting question he had.

He wanted to know if his Medicaid is going to be affected by "Obamacare".

This brings up several interesting observations:

1.  He knows about Obamacare; (no surprise, as he watches a cable channel devoted to news)
2.  He's heard, on said news channel, a lot of bad things about "Obamacare"
3.  Either this channel has made him very anxious; or
4.  He figured it out himself that there could be a problem.


5.  He knows that Medicaid is benefiting him.

He knows his prescriptions are paid for by Medicaid.  I'm glad to know that.  Sometimes, it is hard to know just what he does know. 

 I am not sure if he realizes that he has a Medicaid Service Coordinator, which I think it is fair to say he considers (maybe not a friend, but) someone he can trust and talk to.

Once again, I feel obligated to mention that many people think of Medicaid as something that benefits "Welfare Queens".  In reality, the main recepients of Medicaid paid services, according to my readings, are elderly people in nursing homes.  I wouldn't be surprised if the disabled (like Bil) come in second.

We told him it is too soon to know.  I know that won't satisfy Bil, because he craves concrete answers.

But it's the only answer we can give him.

Wednesday, September 5, 2012

A Storm Chasing Dream?

The media story about a boy with Down Syndrome who was denied boarding because of being a "security risk" reminded me of a flying dream I have every so often.

Bil loves to watch the Weather Channel.  The Weather Channel is one of his special interests.  But, in the real world, Bil is afraid of the weather - especially thunder.

I doubt many adults (or children) with autism enjoy thunder.  Or severe weather.

And yet....there is a storm chasing tour designed especially for young adults with autism.

This is amazing on a number of levels.  Weather can't be predicted.  People with autism do not like change.  On this tour, they would have to accept sudden changes in plans.

Weather can be scary, and noisy.  These adults with autism must deal with unpredictable, loud noises.

People with autism like the familiar. These adults would have to stay in different motel rooms each night.

What an experience!  What a chance for these adults to expand their boundaries.

Another episode of "how I wish this was available for Bil years ago."  Now, I doubt we could get past his anxiety.  And speaking of anxiety....

I wonder how many of these young adults have to fly to get to where these tours tart.  Bil has never been on a plane.  And what would happen if we did get him prepared, and it was flight time and he became anxious?

Nice to know that certain airlines consider young adults with disabilities as a security risk.  I somehow doubt the story that this young man was being disruptive. Although, it is possible.  Just like people with autism can be disruptive if they are exposed to certain stimuli.

But a cell phone video of the young man shows a young, calm man, playing with a baseball cap.

The young man had flown more than 24 times before this.

We all know how many terrorists are people with autism. (not)

No, I think someone in the first class section they were going to sit in somehow figured out that this young man would sit in this expensive section, and no, that just wouldn't do.  And on the flight he finally ended up on, no one was seated within two rows of the family - like they had a communicable disease.

One of my dreams would be to have Bil get training so he could fly one day, just like this young man with Down Syndrome has done, with his parents' support, many times.  But he would also be at the mercy of the airlines.

I think it's likely that Bil would never be able to participate in a storm chasing tour.  Or (without a whole lot of preparation) get on a plane.  But wouldn't it be awesome if he could?

Monday, September 3, 2012

Workshops I Wish Were Around Years Ago-Preparing for the Real World

I do not publicize this blog as it is (at times) a "rant" blog.  However, I do want to post this for anyone from Upstate New York, if they stumble across this blog.

Oh, if only we had this for Bil about....40 years ago.

The Family Resource Network, Inc. Presents its Fall Conference on Autism Featuring Chantal Sicile-Kira, founder of Autism College and Author of A Full Life with Autism

A Full Life with Autism: Preparing for the Real World

Conference Description:
For individuals with autism and for others with developmental disabilities the transition to adulthood can be challenging, but with proper preparation it can also be a positive life experience. Hard-won wisdom and practical tips on how parents and educators can pro-actively prepare teens of all ability levels for adulthood will be shared.
Topics include a short resume of puberty, relationship boundaries, sexuality, self-regulation, self-advocacy.

The skills needed for employment and college will be addressed. Topics include what top skills employers look for in employees; how to create community connections, finding mentors, creating opportunities based on interests or skills. Examples of what parents and educators have done elsewhere with positive results will be shared.

Conference DetailsDate: October 4, 2012
Time: Registration: 8:30 AM
Morning Session: 9 AM to 12 PM
Lunch (included): 12 PM to 1 PM
Afternoon Session: 1 PM to 3:30 PM

Location: Tompkins Cortland Community College
Frank Taylor Forum
170 North Street
Dryden, NY


About Our SpeakerChantal Sicile-Kira is an award-winning author of five books and the Founder of which provides practical information and training on-line.

Chantal has served on the California Senate Select Committee on Autism & Related Disorders, and was appointed to serve as Co-Chair, South Counties Autism Regional Taskforce.

Her most recent book is A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence (Macmillan 2012), co-authored with her son, Jeremy, who graduated from high school at age 22 with a 3.75 GPA, and gave a commencement speech using voice output technology. Jeremy is the Autism Research Institute’s Youth Representative to the United Nations, and the California Youth Leader for the Global Autistic Initiative.

For more information about our speaker, visit the following: &

Registration Information

Registration is FREE for parents and caregivers of individuals with disabilities.

The fee for professionals is $40.00.

To register on-line go
and click on the News & Events and Conference links.


Register by phone by calling 607-432-0001.

Lunch is included.

Seating is LIMITED so please register early.

Registration Deadline is September 25, 2012.

Our Thanks to the Following:

The NYS Office for People with Developmental Disabilities

The Southern Tier Special Education Parent Center

Their support of this conference is greatly appreciated.
Family Resource Network, Inc. • 46 Oneida Street • Oneonta, NY