Tuesday, October 30, 2012

Powerless Bil

Considering what happened due to Superstorm Sandy in NYC, just a few short miles from where Bil and his mother are staying with a relative - Bil has lucked out.

He is comfortable in a finished basement, with all the privacy he could want, while my mother in law visits with her relative.

But, she wants to go home.  Never mind that her entire town is without power.  Never mind that maybe 90% of her county is without power.  The drawer of home, comfort, and routine is a powerful one to all of us, especially when you are elderly.  She wants to go home, even though there no power.

But what about Bil?  Is it selfish for her to take him into that situation?  I think it is, especially as the relative, who has to go out of town, says they are welcome to stay in her absence.

I think we are going to have to put our feet down about this. 

As advocates for Bil, I think we have to do this, IF Bil wants to stay rather than be in a house without power.  (and, truly, if he wants to go home, I still think a woman in her 80's needs to be in a place with power, especially with cold weather just around the corner.  It could be days or even weeks before power is restored.)

We may have to work out something else, but first we will see what tomorrow brings.

Sunday, October 28, 2012

The Drive to Safety

 For the second time in 15 months, Bil has had to evacuate in advance of a storm.  They aren't in danger of flooding where they live, but they are prone to power failures.  And, I even worry that a tree could fall on their house.

Now here comes Tropical Storm Sandy, with thousands and thousands of people evacuating.

Bil, is safe - I hope - with a relative.  His mother is there too and at the very least they will have company in case anything does happen.

Now I can rest a little easier.

But how many times is this going to happen?  As a long distance caretaker for Bil (my role more like an advocate right now) and my mother in law, who is in her 80's,  and global warming, this seems to be happening more and more.

I am so grateful he doesn't have to be in an evacuation shelter.  I dread the thought of a man with autism having to be in one of those places.

Now let's hope everything stays OK in the tri-state area.

Saturday, October 27, 2012

Bil and Hurricane Sandy

We, and a couple of other relatives, have found a safe place for Bil and his mother in law with the storm called "Frankenstorm" bearing down on where they live.

Bil is terrified of rain, especially thunderstorms.  And, there is always the chance of a power failure.

Tomorrow, they will be traveling to one of Bil's cousins, who has been gracious enough to put them up in her home for the duration.  We were lucky, because a few more days and she would have been on a trip thousands of miles away.

For now, they will be safe.

I think it won't be long before we have to face the fact that perhaps it is time that his elderly mother, my mother in law, can no longer be in her house alone, and we will have to fact what living arrangements are best for both her and Bil.

Its not easy, doing this long distance.

Saturday, October 20, 2012

A Happy Day

Today, my husband and I traveled down to the New York City area to attend a family gathering.  Bil was there.  Again, he was "just there" -always on the sidelines, never interacting with anyone, never seeming to enjoy himself . But, one thing I am grateful for is that my mother in law NEVER excluded him from family gatherings.

Fortunately, his behavior has never been objectionable.  He just keeps to himself, like The Invisible Man.

We weren't able to stay with Bil and my mother in law on this trip, so didn't get to talk much with Bil.  He seems to be doing OK right now.  I've been in contact with his Medicaid Service Coordinator and the case load is now so big that visits with Bil are rare.  We keep in touch once or twice a month, and I appreciate it.

We will probably see Bil again at Thanksgiving time.  Let's hope nothing happens between now and then.

Saturday, October 13, 2012

Saturday the 13th

It is becoming more and more difficult to post on this blog.

I blog in spurts, maybe two or three days in a week, and then I don't blog again for two or three weeks.

I guess as long as I want to keep this as a type of online journal, that isn't bad.  But I'm thinking of rolling this over into another blog, perhaps "cannibalizing" it.

For now, please bear with me.  I really need this as a safety valve, especially when I feel like whining or complaining.  Right now, it isn't so much my mother in law I am angry at, but rather another family member, who could be a big help but doesn't want to be bothered.

But don't be surprised if I don't post a lot, and especially don't be surprised if I don't blog much (if any) during the next couple of months.

On the other hand - I may have a lot to complain about in the near future.

We'll see.

Monday, October 8, 2012

Sibling Stories

While I am on the topic of online sibling support, I found this wonderful blog:

Sibling stories.

How I wish I could write one about Bil.  But I don't think that my husband, Bil's brother, would allow me to.  He doesn't want to be involved with any kind of online support.

It can be very lonely being the in law of an adult with autism.  So much uncharted territory, a mother in law who has her own expectations about what Bil's future will be but just assumes we are going to go along with it, and a whole lot of other family dynamics.

But I feel myself on the verge of a rant, so I will just say:  if you are a sib, explore the Sibling Stories blog.  You'll be glad you did.

I just wish there was a similar support group for in laws.

Saturday, October 6, 2012

Support for Siblings Through Amazon

If you are an adult and have a sibling with autism, or any other disability (developmental, physical or mental) there is a wonderful program called The Sibling Support Project that provides online support in a safe atmosphere.

This project needs financial support and there is a free (to you) way to provide this....

If you shop online at Amazon.com, instead of getting into Amazon in the regular way, use this link:  if you enter Amazon using this link a portion of what you buy will go to the Sibling Support Project.


This will bring you into something called the Sibling Support Project Store.  Don Meyer,

Quoting from the Store:

 Dear friend of Sibshops and the Sibling Support Project—

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, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project.

You can shop for just about anything at our Astore. Once you add something to your shopping cart from one of the categories seen at the right and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project.

And here's a tip: If you can't find the category you're looking for, just click "Miscellaneous"!

Don Meyer, who runs this program, is a tireless advocate for siblings.

I only wish my husband would join the Sibling Support Project.  But, like many men, I guess, he poo-poos the need for support.  But I suppose that would the topic for another blog post.

Monday, October 1, 2012

Concerns Raised over Independent Living Centers

A disturbing news article:  Concerns raised over Independent Living Centers.

Quoting from the article:

"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."

Continuing, from the article:

" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."

If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY.  On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.

But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?

Another disappointment.