Tuesday, November 29, 2011

Very Busy Weekend

We had a nice Thanksgiving visit with Bil.  A lot (comparitively) of interaction.  And, some unexpected paperwork.  I am still working through all of the details but promise to post the details later in the week.

I haven't been making many entries lately but I will try to change that - but not until next week.  I will be learning something about Medicare, Medicaid and perhaps some other programs.  The hard way, I'm afraid.

More later.

Friday, November 25, 2011

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.

Tuesday, November 22, 2011

Buried Feelings

We've heard from Bil's newish Medicaid Service Coordinator with a status update.  The MSC has been visiting Bil on the job.  Bil is getting to know her, and is comfortable enough with her now to initiate conversations. This is something he does not due except with family, generally.

The topics of conversation are generally those he talks to (in very abbreviated conversations) family members about.  The weather, for example.  And, some other topics he generally does not talk about - politics.  

Bil has been expressing some concern about his mother.

This is not the first time Bil has shown concern about his mother, and it makes me feel (once again) that there is so much right underneath the surface of Bil that he just can't express.  (which is one reason why I have so many misgivings about People First benefiting Bil - because if you can't communicate, and if you can't communicate your need to be able to communicate, you are never going to get help with communication.  So because Bil isn't expressing his desire to communicate he will never get that help.  Around and around this will go forever.  But I digress.)

But he can communicate his concern and it seems to be a concern about his mother's ability to drive.  Ah, that is sometime else too....the keen observer of events.

What has he seen, exactly?  We just don't know.  Is it just age related issues - so far she isn't showing the obvious signs of needing to give up the wheel (lots of minor accidents, etc.)  None that she is admitting to, anyway.  But we see him next, in less than a week, how can we find out?  We aren't going to have time alone with him - he basically comes up for air (mealtime) and then runs right back into his room, not to be seen again unless there is a public place he wants to go to.

Always a challenge.

Thursday, November 17, 2011

60 Minutes Revisited

I had blogged earlier when the 60 Minutes was shown recently with the interview with Steve Jobs and then a segment talking about children with autism communicating through I-Pad apps designed for this purpose.

There is now someone talking about "another side" of this.

Bil has always been verbal (although he didn't talk until he was nearly 5) but he has never evinced an interest in computers.  I've tried to go online with him and he really wasn't interested.  I even tried taking him on the Weather Channel website.  He loves to watch it on TV but on the web - no interest.

So it is certainly a myth that all people with autism love computers.

Nor does Bil's mom have an I pad or even an ereader.

I wish there was a way to give Bil the gift of easy communication.  Although he is verbal he can't sustain a conversation for more than a few words, even on a subject  of interest. (He will basically blurt some fact like "The Mets won last night" and that's about it.)

Although-would we want to hear what he would have to say to us if he could be helped by an I Pad app?

Tuesday, November 15, 2011

Stuck Stuck Stuck

Bil's Medicaid Service Coordinator tells us there is nothing that can be done to help us find emergency housing for Bil as long as we are not his guardians.  This is because Bil has not expressed any interest in this option.

People First strikes again.  I maintain once again that People First, while great for those without cognitive disabilities, is a disaster for those who can not understand complex concepts such as "if my mother, heaven forbid, drops dead tomorrow, my future is going to change tremendously and I can not stay in  my mother's house, where I have always lived, because there is a reverse mortgage on it and the bank will kick me out."  In not so many words, that is.

As far as we know, my mother in law has never been declared Bil's guardian, but she seems somewhat secretive about this.  If she were his guardian, she assumes someone in the family is going to take Bil in.  Somehow, this conversation never takes place.  It is just too painful for any of Bil's brothers or sisters to bring up. Never mind that most of us are older than Bil, that some of us have health problems, and that Bil really deserves something better than being passed from sibling to sibling as we pass on.  Which will be, in all probability, before Bil leaves this earth.

So do we start the legal proceedings to become guardians?  This would, I fear, tear the family apart as long as Bil's mother is alive.  The only hopeful thing is, the brothers and sisters may be together for Thanksgiving.  But I am not optimistic about this conversation happening.  I fear no one will want to "ruin the holiday".

If Bil's mother dies before we can have a frank discussion a lot of holidays are going to be ruined.  Why do we always seem to be stuck in quicksand?  I'm so tired of whining about this.  I was hoping to have a hopeful blog, not a whiny blog.  But we are stuck stuck stuck.

Saturday, November 12, 2011

NY Whistleblowers

Nothing much to report re Bil this Saturday.  So instead, I will pass along a link to the latest scandal in NY State:  what a surprise, people who were supposed to shield whistleblowers - employees of group homes who might be reporting instances of neglect or abuse - were instead reporting the names of the whistleblowers.

We have never considered group homes as a  housing option for Bil (who lives in New York State) but one never knows what the future will bring.

Reading some of the instances of abuse/neglect in this article makes me hope that we never have to consider this option.

Tuesday, November 8, 2011

Voring and Autism

Today was a milestone for the son of an autism advocate I have written about before.  It has been quite a year for this young man.  Turning 18, and then having his neighborhood flood severely, causing him and his family to have to relocate, and disrupting his school routine.  (at this point I don't even know if they have been able to return home.)

But today he voted!  What a milestone.

I'm proud of you, young man!

(I don't know if Bil voted.  I hope he did.)

Monday, November 7, 2011

A Mother Who Cares for the Housing of Her Child

I haven't been reporting on Bil's Medicaid situation lately.  It has not gone well, and I would rather not talk about it.

We are not going to get much help as far as getting a housing situation for Bil set up.  Rather than vent my anger over the situation (while we try to juggle work situations, flood recovery from our community flooding in early September due to a tropical storm that dumped some 10 inches of rain on our fair community, and other issues including a health issue in my family) I found this blog post.  A mother with the energy to go through this process, the process that we just don't seem to have the will to pursue.  May she obtain what she hopes to obtain for her son.

It isn't that my mother in law doesn't care. It's that she doesn't get it and no one wants to confront her.  And someone we thought was going to be an ally in our efforts turned out not to be.  Shame on us for trusting that person.  We just don't have the energy to pursue it.  I am feeling quite overwhelmed right now.

Right now I really don't want to say more.  I will when I am ready to.

Sunday, November 6, 2011

A Disturbing Video

Everyone who has raised a teen knows that they try your patience and sometimes your sanity.

In the now famous "teen being beaten by father who is a judge in Texas" video, sometimes that can take an ugly turn.  The then-teen, now in her 20's, has Celebral Palsy, but that really doesn't enter into this situation. This, from a interview on the Today Show, seems to be a lot more than a "special needs teen" type case as the mother claims to have been abused by this same man, her ex-husband.

 I frankly hope this judge ends up in jail for what he did.  This is way beyond discipline.  If he had done this to a stranger out on the street, he would have had to answer to the law.

Children with disabilities...any child, really...deserves better than this now famous video seen over 1,000,000. times on You Tube.  I have not and will not watch the entire video and will not post the link to the entire 7 minute video on You Tube.

Bil was never treated like this growing up.  And if he had, it would have been Just Plain Wrong.

Saturday, November 5, 2011

The Silence of Life

I don't know why it took this long for me to find out about thisThai life insurance commercia.  But I have.

This speaks volumes for so many aspects of the suffering a sibling, a parent, or a child can suffer due to the harshness of society towards those involved in the lives of those with disabilities.  In the case of this commercial, it is a Deaf father who can not speak, and his teenaged daughter on her birthday.

I think anyone who has raised a teenager will identify with this little story.

The Thai Life insurance commercials are some of the saddest around.  This one speaks volumes to society's prejudice - not just in Thailand, but in our country.

Friday, November 4, 2011

Support the Sibling Support Project Through Holiday Shopping - Please!

I am passing this email along from the Sibling Support Project.  This is a most worthy organization, providing a safe place to vent, to share experiences, to ask for information, and just simply to network with other people who have disabled siblings.  The type of disability isn't important.  It can be physical, mental, or developmental.

I honestly wish there was a similar organization for the "others" in siblings' lives - such as their husbands and wives.  But there is not.  But at least the siblings have support.

This will not cost you anything.  If you plan to do your holiday shopping (Christmas, Hanukkah, Festivus, or whatever) on Amazon, simply use the link below to access Amazon.com.  It will only cost you a few seconds, and will not cost you a penny.

Thank you for your support!

Dear friend of Sibshops and the Sibling Support Project,

spacer.gifIf you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading to the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore. Please add it to your favorites or bookmarks.

Once you add something to your shopping cart and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 

Thank you for your support! Here’s the link again.

One last thing!  If you'd like to celebrate the holidays with a direct gift to the Sibling Support Project please click here.  Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,

Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what on our Amazon Astore, so we’ll never know you bought grandpa a subscription to Playboy.

PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?

Thursday, November 3, 2011

Epilepsy and Autism

I encourage you all to read this post by a woman with a husband and children with epilepsy.

This is not an "autism" post but a lot of the information (it's a long post but worth it) would be of interest to family members of people with autism.

At one point in time Bil was suspected of having epilepsy but it turned out he (apparently) does not.  However, it does seem that the rate of epilepsy in those with autism is higher than that of the general population.

I'll let this powerful blog post speak for itself.