A Very Bil Christmas

We had a very pleasant Christmas today, at a relative's house.  We exchanged gifts, with Bil staring into space and not making eye contact with anyone.

But that doesn't mean Bil doesn't care.

He picks out all gifts with the utmost of care.  I don't know how much help his Mom gives him, but he always tries to base his gift on an interest the person has.

He was happy to be with family, but didn't want to get involved in any of the games we played with each other after dinner.  He wants to be with us, but, as usual, doesn't want to be involved socially with us.


I never knew Bil when he was really young, to know how he behaved.  So many children with autism find the holidays a difficult, overstimulating time.

But Bil copes well.  The family is used to this, and just played games around him.

Tomorrow, we will be going home and may not see Bil again until spring - depending on how harsh the winter is.

I Wish I was a Wise Man

This time it's snow and wind.

First, there were the immediate concerns.

Will my mother in law lose her power?  Will Bil be temporarily at the mercy of his mother in law's decisions to stay put (or not) without power?  After Superstorm Sandy, it took days for her power to be restored.

This time her neighbor, who helped out so much, will be far away, in her winter home.

But now, there may be another storm coming right after Christmas.  We are going to have to make a decision, while we are visitingher and Bil for Christmas, of the best way to insure her safety.  Worse case scenerio, we will have to cram Bil and Mom into our small car and bring them back with us next Wednesday or Thursday.

But we can't keep doing this.  Again, I know "the our of decision" is almost here, but I still feel like a fly stuck in amber.


I feel paralyzed by the events in Newtown, which continue to affect some of my thought processes.

I wish I was a wise man, and I wish there was a star shining in the sky that would give us direction and guidance.

A Lottery Christmas

Christmas has come and gone.

Bil got what he wanted - Barnes and Nobles gift cards and chocolate.

And he got something he did not ask for - lottery tickets.

This was obviously Bil's first experience with lottery cards.  These were the scratchoff games you can buy in machines here in New York for $1, $2. or even $5. The $2. games, for example, can have grand prizes of $25,000.  You scratch off numbers and can win.

My husband showed Bil how to scratch off the numbers and tried to explain how the game worked.  Not sure Bil got it, but he sat there patiently and scratched all the tickets.  Alas, he didn't win anything.

I'm glad.  Because if he had won, I wonder if he would have wanted to start playing the lottery.  At his financial level, it would be so very tempting.  I've not heard of people with autism developing gambling habits but....hey, you never know. 

Would he have considered it harmless entertainment like the rest of us?  I'm glad I didn't have to find out.

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.

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,

If 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?


Festivus (a day late) A Holiday of Choice for People with Autism?

I was too busy celebrating Festivus yesterday (well, not really) but I got to thinking about this holiday made-up for a Seinfeld episode back in 1997, which has caught on as a type of "anti-what the holiday season  has become" holiday.  (yes, I understand that the family of a Seinfeld writer used to actually celebrate something like this, but I will date this from the Seinfeld episode "The Strike".) 

Its slogan is "Festivus: for the rest of us".  Its point is to enjoy the holidays without stress, without commercialism, without pressure.  Families of those with autism can appreciate that.

The holidays are so difficult for Bil and others like him:  as the Grinch would say "the Noise, the Noise, the noise noise noise noise".  The breaking of routine, too.  The lights, and the other bombardments of the senses, don't add to the enjoyment.  Many families with members having autism have to tone down the holiday.  Bil is older, and Christmas has become a type of routine for him now.  But for younger children, it is extremely stressful-for them and their families.

And who needs more holiday stress than is already out there.

But then, there is Festivus.

There are several elements to Festivus, if you are not familiar with the holiday.  First, the Festivus pole, unadorned unlike a Christmas Tree - but made of aluminum, for strength.

People with autism would appreciate the relative lack of sensory bombardment.  As for strength, they must show it every day of their lives.  As must their families.  Plain, unadored.  Wonderful symbolism.

At the Festivus dinner, there is a set ritual.  Again, perfect for those with autism.

First, is the Airing of Grievances.  Family members, one by one, tell the dinner participants how they have disappointed in the past year.  Oh, what families related to autism could tell in the Airing of Grievances:  not specifically for their families (but sometimes other family members deserve a mention in the Airing), but what each family member has gone through in the previous year, with mean-spirited people in public, with the school system (too many times), with the  government agencies set up to help them.  With being excluded, despite protective laws.  With embarrassing moments only other families touched by autism would understand.  They would air how they have to fight every minute of every day in the struggle for advocacy and also devote themselves to their jobs, their families, and their neurotypical children.  They would really like a break.

Then dinner.  Not a fancy dinner.  Meatloaf is the usual choice. That's good, too.  Plenty of symbolism there.  The dessert should be a Pepperidge Farm cake decorated with M&Ms.  Not so good there, we don't want the artificial coloring.

Wrapping up the dinner is the Feats of Strength, where someone wrestles the head of the family to the ground and pins them.  This is very symbolic, too, of the daily struggle.

There is one last element, the "Festivus Miracle". Unlike a true miracle, Festivus miracles tend not to have happy endings.  Families with autism can sometimes identify with that.

After I started to write this post, I wondered if anyone had linked Festivus to autism, and the answer is "yes".   But I disagree that Festivus has "nothing to do with autism".  I think it does. As goofy as the thought of celebrating a holiday created for "the rest of us" via a comedy show of the 90's is, it does offer a chance to step back from what "Secular Christmas" has become:  and remember that Christmas really isn't supposed to be a source of unhappiness and stress.

Happy belated Festivus.

Supporting the Sibling Support Project Through Your Holiday Shopping

I don't usually do plugs but this one is important if you do shopping on Amazon.com.

To quote from the Sibling Support Project, something I wish my husband would use for support (but that's another story) because it is a worthy organization:

"GET THE SAME GREAT DEALS YOU ALWAYS GET AT AMAZON.COM WHILE SUPPORTING THE WORK OF THE SIBLING SUPPORT PROJECT!  VISIT THE SIBLING SUPPORT PROJECT'S AMAZON ASSOCIATE STORE at" this link.

If you use this link you will pay the same price but the Sibling Support Project will get a portion of the $ of your purchase.

The Sibling Support project provides support through a Yahoo Group, Facebook, and various other opportunities for adult siblings of people with autism and other developmental disabilities, mental disabilities or health issues.  They have members from all over the world.  It's moderator, Don Meyer, is a tireless advocate for siblings.  They also work, through slightly different channels, to address the needs of siblings who are not yet adults.


Please consider doing your Amazon shopping through the above link.