The Sounds of Silence

Silence is not just the absence of sound.  Silence speaks in its own way.

Last week, I blogged about a housing opportunity for my autistic brother in law "Bil". When my husband told his mother (Bil is still living with her, as she approaches her 90's -her choice) her reaction was silence.

Silence can communicate a lot.

This Tuesday, Bil's service coordinator swung by my mother in law's apartment.  Bil met with her in his bedroom.  My mother in law doesn't hear that well and could hear little of the conversation.

In his bedroom, Bil signed an application to be considered for the housing opportunity.  It's been submitted.

So, yesterday, my husband had to tell his Mom the rest of the story, so she would have time to prepare.  Here's the situation:  If an apartment at this opportunity came free, Bil HAS to take it.  He has to take it right then and there. Otherwise, he may not have another chance.

Housing for people with developmental disabilities is in short supply.  There will be plenty of other individuals ready to jump at the chance.

My husband stopped by with groceries.  Mom knew he was going to talk about the housing.  He told her the full story.

His mother stayed silent for several long minutes.  Her silence said it all.

Finally, she spoke.  She spoke three words, in the language of her parents.

The words translate to "what will be, will be".

I know my mother in law wanted Bil living with her for the rest of her life.  But, he has to leave whenever this opening comes.  It could be two months (it will take that long for the application to be processed).  It could be six months.  But one day, the call will come.

He wouldn't move far- just a couple of miles from her, and from us.  It sounds like a good setup, too.  He would have one roommate.  Each would have his own bedroom. They would share a bathroom and a kitchen.  There is someone on premises 24 hours a day to help with any issues.  There is also transportation available.

Right now, he has his own bedroom and shares a bathroom and a kitchen with his Mom.

Bil came to a meeting yesterday that was supposed to take place last week.  At the meeting, he asked questions about where he would live.  I think, in his mind, he wanted to confirm what he had already been told.  All the answers were the same as information he had been given before he signed the application. 

According to my husband (I was at work), Bil didn't seem anxious.  I think a part of him is ready to fly the nest he has lived in for almost 60 years.

I just hope my mother in law is ready.  Silence, as the saying goes, can speak volumes.

"The sounds of silence" - today's prompt for #FridayReflections. Hosted by Corinne and Sanch, we choose from a small list of prompts, or from a weekly photo.  Come link up, or read what we each have to say and vote for your favorite post.

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.

http://astore.amazon.com/thesibsuppro-20/

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.

The Missing in Action Sibling Survey

A couple of weeks ago I blogged about a New York Sibling Survey - and it still isn't live, as of today. 

Nor has the message my husband left on their phone on Independence Day been answered.  This doesn't surprise me.

What will we do? Probably wait a couple of more weeks and try again.

I really wonder why this survey, which was supposed to go "live" in June, is still missing in action.

Once again:  siblings get no respect?

No voice?

One reason I suppose I have to somehow keep on blogging.

Almost at 300

The 300th post is so close. In a way, this is a milestone, given that I don't post here all that regularly.  And with this post, we await a visit from Bil this weekend.  He will be coming with several other family members.

We don't know yet if he is going to stay with us. But the weather is going to be good, so Bil won't have to worry about his dreaded thunderstorms.

What will happen during the visit of the siblings?

Probably what happens in the other visits.

We sit and socialize with family and Bil sits wherever there is a TV and watches the Weather Channel.  We might as well be invisible, except for dinnertime.  At dinner, he eats and runs.

Family sometimes tries to get Bil to spend a little more time with us but if he does, you can tell he isn't very happy about it.Well, he might be, but that's not how he appears to behave.

This time around, we are going to try to get Bil to help some with the food preparation.  My sister in law had some success with that last time he came up here.  He is willing to do this as long as there is no cooking involved.  He is terrified of the microwave oven and, for that matter, the cookstove.

Last time he was here, it was because of Hurricane Irene.  Not good memories, and I hope he isn't anxious because of that.

We'll just have to see how it goes.

A Sister's Perspective

I wish my husband had written about Bil when they were both young.  I wonder what he would have said.

That's why I enjoyed this post by a teenager who has an older brother with autism. 

I remember my mother in law's hurt one time when she discussed her childrens' relationship with Bil when they were growing up.  I think she would have loved for them to take on some of her burden.  Keep in mind that in the 1970's my mother would not have had any support.  Not from her pediatrician, not from the schools, not from support groups.

She looked to her children.

And her children wanted to be children.  They wanted their lives.  I can sympathize greatly with my teenaged husband to be, trying to be a "normal" teenager and not the sibling of someone with autism.  By the time his family knew Bil had autism (keeping in mind it was NOT a common diagnosis in those days) my husband was already out of the house and living out of state.

Today, I'm glad to say, sibling have support. 

I encourage you to read the post I linked to.  I'd also love to see what she might say in 10 years.

And the other thing?  I hope that her Mom and Dad have made plans for her brother Marshall, and not left things up in the air the way my mother in law has.  Even to this day, in her 80's she still can not face the fact that she will leave her son behind. 

But that is a story for future posts.

Support for In Laws

I accidentally stumbled on a support organization for sibs of people with disabilities, located in New York City.  We live in upstate NY, not that close to NYC, but that may or may not matter.

This "NY Meetup" is a place to meet and network, apparently - it is not a place to vent, at least online.  There is even a button where you can use Facebook to find out if any of your Facebook friends are a member.

First, it got me to thinking about my mother in law, who had to "do it alone" in raising a child with autism back in the late 60's and early 70's.  There was absolutely no support for her.

She has never expressed any interest in networking with other Moms.  Perhaps, at her age, she doesn't think it is necesaary.

Next, it got me to thinking about male vs. female. My husband has never been that interested in support groups. And, interestingly, looking at the list of members - there are men, but it looks like the majority of members are women.

It may be a stereotype, but it seems (in my experience) that women in general like to have the support of other people in their particular situation, where men see themselves more as solitary problem solvers.  It's almost like asking for help is like asking for directions - not manly.

Not better or worse styles, but just....different.

And last but not least:  I felt a pang seeing another support organization for sibs.  There are organizations to support sibs, and organizations to support parents.  It's a familar pang -when will I ever find support from other in laws?

I can't be the only one in the situation of having an inlaw with a disability.

Maybe I'll (grin) have to make it up myself.

Anyone else out there married to someone who has a sib with a disability?

Casting my pebble into the waters.....

Another Sib-There But For the Grace....

The other day, we met an individual who has not one, but three, siblings with disabilities of one type or another.

We are very lucky with Bil in many ways.  Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him.  Also, he is in relatively good health.

As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.

We talked about one sibling in particular.  The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today.  It's a tragic situation.  The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.

When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.

Just like Bil.

The sib did make the adjustment though.  Just like Bil will have to when his time comes.  He will have no other choice. And I don't know how well we can prepare him in advance.

It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.

A Sibling's Viewpoint

I ran across this article tonight.  I will take a small break from blogging - just feeling exhausted right now - and will post this.  It's written by a woman with a severely disabled sibling.  Ironically, it is his disability that allows her to be close in a special way with him:  her other siblings live far away and/or are too busy with their own lives.

True, that Bil isn't quite this disabled.  Should I feel guilty that I can love him and want to do right by him, but it is so hard to connect with him that it can be very hard to like him?

Anyway, I loved this article.

We'll be seeing Bil again soon.  And perhaps in February, spending extended time with him again.

International Day of People with Disabilities - Bah Humbug!

Today (to look at more than just Bil for a change of pace) is the International Day of People with Disabilities.

Well, it's great talking about it but it has to be mor than just talk.  It seems too many times these "Days" are the "same old same old".

My mother in law is in her 80's and caring for a son with a disability, autism.  She is far from the only one.  I have heard anecdotally about parents in their 90's trying to care for children, with little help from the agencies (government or other)that supposedly exist to help them.  There's a lot of lip service but a lot of very needy parents.  The older they get, the heavier that advocacy burden becomes.  Having trouble doing it now when you are 30?  Wait until you are 82!

My mother in law is lucky in a way. She has three other grown children, and they are all involved.  (Our frustrations over trying to help, and take aspects of Bil's care over are besides the point for the purposes of this discussion.) And, she's made her own decision to keep up this burden.  But there are many parents out there that could not put down that burden even if they wanted to.

Even in our case...two of the three siblings of Bil are older than he is.  One is married to a woman with health problems, a woman who received a layoff notice right before Thanksgiving.  (Happy Thanksgiving!) With increasing life expectancy of people with disabilities, what happens when they outlive both their parents and perhaps their brothers and sisters?

I don't want National or International Days of Hot Air.

Our disabled community deserves something more than Hot Air!

Another Visit

My brother in law and his wife are heading for my mother in law's house tonight.  They won't be down there for long but we will see what they can find out.

In the meantime, I am doing some research to hope to organize myself.  We are 150 miles away so I guess what we are doing is going to qualify as "long distance caretaking".  Our opportunities to visit are limited, so we need to be able to do as much as possible in each visit.

We need to identify where my mother in law wants help and where she will resist.

And the three neurotypical siblings of Bil, need to "get on the same page" so we don't work against each other.

And then....well first, let's see what happens this weekend.  And then, we go down the end of the month.

SibNet and SibKids

I would be remiss if I don't mention two lifelines for siblings (young and old) of those with disabilities of all types.

SibNet for adults - SibKids for children.

Both are very safe places to gather on line, and talk.  To talk about successes, frustrations, and gather information.

If you are a sib-you are not alone.  Unlike my husband, who had to "do it alone" there is help now. 

Enough of recommendations for now-in my next posts I will be returning to my brother in law.