Another Victim of the Upstate NY Flood

It has been a tradition, for many years, for the Southern Tier Independence Center (STIC) to host a Hometown Holiday Lighting Festival. This started in 2001, in Otsiningo Park, and a carload of people, for a very reasonable price, could drive through the park and enjoy lighted holiday characters.

It was a major fundraiser for STIC.

And now it has been cancelled for this year (and possibly for good), due to our flood of earlier this year.  After torrential rains the beginning of September, many places were flooded.  Otsiningo Park is prone to flooding (that is one reason there is a park there, and not housing developments) but this was bad even for them. The water got into the electrical outlets the displays depend on.

Another "victim" of our floods? STIC must now try to raise money in another way, competing with flood related charities and others.  This will be a hard holiday season for our Triple Cities of New York State.

STIC serves people with all types of disabilities, including autism.  If Bil lived here he may have received service coordination through them.

Not much to say....I hope they can make up the shortfall.  Or, people with autism and other disabilities will pay the price.

Happy Birthday to an Autism Advocate

Happy birthday, Sally.  I don't know which number birthday it is, but I am so glad, after your battle with cancer that you are being given additional opportunities for birthdays.

You have done so much for the autism community in this area.  And now you have to deal with a random force of nature.  In September, Tropical Storm Lee dumped massive amounts of rain on your neighborhood. Flooding resulted.  Your neighborhood, along with several others, are now local synonyms for disaster.

I drove through a couple of blocks of your neighborhood for the first time since the floods today, heading towards a shopping destination.  The exit from the highway has been open for a couple of weeks now but I just didn't want to go there. There is still so much work to be done in your neighborhood, Sally.  There are still porta potties on several street corners, I see..  In one yard, or what used to be a yard I guess, a large tent was sheltering people preparing lunch for the neighborhood.

I think of you and your children living in the middle of all that.

But I also know that you are not prone to self pity, Sally.  What I can hope is that karma, or whatever, will bring "normal" back to you-whatever normal is.  You've done so much for other people, especially the children and young adults of the Southern Tier with autism.  You deserve a very happy birthday.  I hope you got one, and had the time to enjoy it.

Next year HAS to be better!

Flood Recovery, Neighborhood Buyouts and Autism

My autism advocate acquaintance is back in her flooded home.  Hurray!  The school bus is running for her son finally and his routine is somewhat restored.  She has much hard work ahead but there is a sense of community in her neighborhood that will support her in the days ahead.

What, then, will happen if her neighborhood is offered a buyout?  I haven't heard of one yet but it may be a distinct possibility in our brave new world of the post-flood Southern Tier of Upstate NY.

Moving is traumatic for us all.  For you to wake up one day to find flood waters sweeping your neighborhood, followed by sewage, gawkers and loss of routine must be terrible for any of us.  And, as so many other things are, so much harder for someone with autism.

I don't know how much of her son's life has been spent in this house, but it is bad enough for the losses they have already suffered.

I hope a solution is found, because that neighborhood is such a wonderful one to live in for its residents. What a shame to perhaps lose it.

I know this isn't blogging directly about Bil, but I can so easily imagine him in this situation.

Another Gap in Posting

I apologize for not posting the last several days.  Flood recovery, even for us (not as impacted as many we know) is still mentally exhausting.  We hope to have better days ahead.

We have been in communication with Bil's Medicaid Service provider in the meantime, but that will have to be a story for a less busy time.

So Grateful

As family of minor children and adults with autism  in the Southern Tier of NY and the Northern Tier of Pennsylvania struggle to keep routines and get their lives back to normal, the shelters empty out and families return to their homes.  For at least one such family, they are going back to a house still without power, and needing to be completely bleached out due to sewage having gotten into the water. 

I shudder to think, since I live in a flooded neighborhood - what if I was responsible for Bil?  What would I have done when the evacuation call came?  Would I have stayed in a flooded neighborhood?  Would I have tried to bring Bil to a shelter and take my chances?  I don't know. What I can tell you is that rational thinking goes out the door at a time like that.

Speaking of loss of routine - life stops in a flood.  You can't go anywhere.  The smell is incredible.  Traffic noises stop but there are helicopters in the air everywhere. And the relentless sound of rain coming down...coming down....still coming down, as the water gets higher and higher.

What if we decided to try the shelters?

One shelter was at Binghamton University.  We probably could not have reached that one.  One was at Johnson City High School.  We may have been able to get there at first but eventually all the streets around us flooded. How anxious would Bil have been?  How anxious would we have been?

I am so glad we didn't have to make that choice for Bil - that he was over 100 miles away, safe.

Free Transit This Week Due to Flood

I can applaud a lot of government agencies and people this week in the wake of our area flood - I would like to especially give a shoutout to Broome County mass transit, which a lot of people with disabilities depend on.

Because several of the routes are disrupted, BC Transit is not charging fares this week.

Having routing changes can be a huge thing to someone with autism dependent on the bus coming to a particular place at a particular time (and also, the rest of us!).  So I also applaud all the government agencies trying to get roads back to normal so mass transit can continue normally. The goal is to have that completed by Monday.

May they make that goal.

Thank you again!

One More Take on Natural Disasters and the Disabled

I wanted to pass along a little story a neighbor of mine told me when we returned to our flood stricken neighborhood in upstate NY on September 11.

This neighbor's mother has kidney disease. She recently received a kidney transplant (one of the lucky ones, I might add, but that is a story for another day).  When the call came to evacuate our neighborhood, this daughter had a terrible choice to make.

Go to a shelter?  Or take her chances with a local relative?

She chose the relative. Why?  Simply put, her mother never would have survived the shelter.  Fortunately, the relative was not flooded out. But what if? 

Why couldn't a transplant patient go to a shelter?

Simply put:  too many germs.

On top of that, the neighbor had to quickly gather all of the anti-rejection medications her Mom takes.  There was about $2,300 worth.  If those were lost, the insurer would not give out another supply.

Just another day in the life of the medically fragile, you might say.  But ponder this.

One of the leading causes of non-genetically related kidney disease is diabetes.  And, guess what is growing rapidly in this country?  Yes, the percentage of people with diabetes.  Want to bet we'll be in the middle of an epidemic of kidney disease in a few years?  

And having diabetes in the middle of a natural disaster - in that context people with diabetes are disabled, too.  They just can't throw their meds aside.  They need frequent meals and can't just eat anything presented to them.

So never mind the burgeoning population with autism.   Besides the developmentally disabled our society is going to be dealing with a lot of people caught up in disasters who are medically fragile in one way or another.  Are we prepared for this?  What do you think?

More Autism Flood News from the Triple Cities

This news was released last night.  I know a couple of people in the Twin Orchards area of Vestal, NY including someone with a teenaged son with autism.  This is the latest of several blows to the life of this family and their neighborhood.  Bottom line, it seems likely this neighborhood will be condemned.

The only good news is that her son's school reopened yesterday so he can try to settle back into some kind of routine, at least for part of the day.

My husband and I know several people now who have lost everything, including a woman 5 months pregnant with her first child.  Many people need everyone's thoughts, prayers and support right now.  But I especially feel sorry for this one mother, as she has done so much for other people.

I hope I can find a way to help her.

Help with the Flood From a Person with Autism

Yesterday, I returned home with my husband.  We only got water in our basement, but much of what was in there was ruined.  Mold (or something dark) was already starting to grow on the walls.  It was not pleasant.

To the rescue?  My son and his good friend, who has Aspergers Syndrome.

Let's put it this way - flood water stinks. It is slimy.  You have to use chemicals to help with the cleanup.  These chemicals stink too.

And the friend didn't hesitate.  True, he was being offered some money but it still had to be hard. He had just returned from where he (yes, he also) had been evacuated to.  And after he left our house, he went to help his grandmother, whose house in another part of our county was (I hear) under 5 feet of water.

Thank you, friend.

Autism and Taking Refuge from Flood in School

Today, I got back into my evacuated neighborhood, evacuated Thursday due to flooding caused by former Hurricane Lee.  But an autism advocate I have written about before, Sally Coletti, is still not able to move back into her home.  She lives in one of the areas that has been heavily, horribly impacted by the Binghamton area flood.

She isn't the only one with children with autism that has been left temporarily homeless by the flood.

One thing that has been disrupted here is school.  For children with autism, school is part of the routine of their daily lives.  When there is no school they aren't happy because their routine has been disrupted.  To children with autism, a good school placement is like a lifeline.  And our area is blessed to have a great autism school placement for those functioning highly enough to be part of it - the Oak Tree Program.

But what happens when students are in shelters?  Can the school buses run?  (I've blogged a little before too about the fact that people involved with shelters rarely have training to be able to work with children and adults with autism - causing an extra nightmare for those families.)

I don't know if Sally Coletti's school district will be open tomorrow, or where her family has taken refuge. But if I know the Oak Tree program, they will make sure their students can return to school.  Even if those students can't return to their homes.

Why I've Been Silent

To my readers - I am in one of the evacuated areas of the Triple Cities in upstate NY.  We are OK but have not yet returned home.  When I do I will be blogging more about certain experiences.

Please be patient - I will return!!