Friday, April 23, 2010

IMpact newsletter

Gee, finally something addressing "Aging and People with Intellectual and Developmental Disabilities". 

I know I'm not alone but sometimes I feel like I am.

Sometimes I still don't know what direction I want to take in this blog.  Do I want to keep it as a "bitch and moan" blog?  Or do something more?

Sunday is supposed to be a rainy day.  Maybe I'll find some time to read that article.  I sure hope it has something of use to my spouse and me.

Sunday, April 18, 2010

A Couple of Elephants in the Sibling Day Room and a Question About Sibs In Law

April 10 was Siblings Day. The premise is, we only have our mothers and fathers for some of our lives but we have our siblings for much longer.  Sometimes, for life.

Sibling relationships take many forms, and these relationships have always fascinated me, an only child who is mother to an only child.  My husband, however, has several siblings, one of whom has autism.  And, we together (for I partner with him in this, as in other aspects of our 36 odd years of marriage, although sometimes I wish I didn't have to) we have other aspects added to the special sibling relationship.

There is a man who has done a lot for siblings who have siblings with special needs - whether they are young children, teens, or adults.  That man is Don Meyer and I can not praise him enough. Don has given voice to the "special sibs", through SibShops, through SibNet, through writing his books, from interviewing people in that life, to making their voices known.  Nor can I say enough about the Sibling Support Project and encourage anyone shopping through Amazon to enter through their portal.

I respect anyone who founds and successfully runs a support organization, because I know how hard it is from personal experience.  I am as introverted as they come, and my attempt did not succeed.  Of course this is long before I had heard about Don.

I wrote Don once, and never got a response back - I know it got swallowed up in all his activities and I need to work on this on my own.  But let's say I had a chance to meet Don.  In our imaginary meeting:

Here's my question to you, Don: What about the unsung partners of all those "special sibs".  Some sibs never marry because they are so frightened they will have a child like their sib. (Yes, I am going to say it. It's one of those elephants residing in the sibling living room.)  Some never even form lasting relationships for fear of rejection.  Others marry, but their partners don't care.  Others have partners that do just as much, if even more, than the sibling himself or herself.

Those people need support too, Don, and today, reading about Sibling.  The Sibling Support organization is a wonderful place for siblings to vent but, honestly, I don't feel like I belong there.

So maybe, Don, what I should do is create a "Sibs in Law" page on Facebook, one for the other support group in siblings' lives.  For now, this blog is enough.  So maybe I'd better get cracking and get my focus back here, which should be on Bil.

Tuesday, April 13, 2010

Retirement with a Brother in Law with Autism?

Rant time.

Let's say we retired to....well, somewhere else.  Let's say in North Carolina.  Or Georgia.  Or Florida.  Or even if we could afford to be snowbirds.  Which we probably could not afford.

Disclsaimer: I am far from ready to retire.  And, I don't know if I would want to move Bil if we did move elsewhere.

It's bad enough, though, thinking that we may never be able to truly retire, because of choices my mother in law made.  Without ever consulting us.

My mother in law made the choice to have Bil live with her.  a couple of years ago his name came up on something called the NYS Cares List and she refused to move him. 

I am not sure she is starting to regret it, but the last two times we have visited, she has mentioned a relative who says "you aren't alone, you have Bil" and she wonders that this relative thinks that Bil is true company for her.

But more than that, I resent that she never had any conversation with her chhildren about her expectations...or wishes, concerning us.

It's one thing making a decision for yourself but another for making decisions for your adult children.

When my husband thinks about having "that discussion" with her, the words stick in his throat.

We know Bil has a Special Needs Trust, with money saved over the years.  But I have no way of knowing it is enough.

Bil works in a sheltered workshop, so it isn't like he's going to be able to chip in that much.

We don't know what kind of housing situation will exist via NYS Cares or other NY programs when he finally needs it.  Again, those words stick in the throat.

We don't know what the pending budget cuts will mean for him.  Or what hoops we'd have to jump through to get him benefits in a new state.  So right now I'll just worry about where he is now.

It is hard to have any kind of conversation with his Medicaid Service Coordinator.  If we call she runs right to my mother in law and gets her upset.  It's like playing a game of "telephone" (the one where a group of children stand in a line. One whispers a message to the next, and on down the road, and guaranteed the person at the end has heard something totally different than the person who started the message intended. 

One time we said we wanted to talk about budget cuts and the next thing you know my mother in law is calling, wondering why we called the Medicaid Service Coordinator about Bil's finances. 

Why does the MSC run to her?  Isn't Bil her client?  My mother in law isn't even his guardian.  And that's another thing.  What legal hoops will we have to jump through to help Bil pay bills, to get medical care for him?

At least now we have met his doctor, and we signed HIPAA releases while he was at his appointment.  My mother in law said "Bil will sign the releases" and he actually did so.  Good thing, because if it was in his mind to resist, it would have been an uphill struggle.

One thing is for sure-we've been distracted with things in our own lives (health concerns, etc.) that we haven't kept on top of things the way we should have.  I'm afraid the only thing that will focus us is the day we get "that" phone call.  You know, the one that will force us to think about Bil.

Can't let things drift.  Can't.....if we ever hope to retire.  We have to take charge here, somehow.

Saturday, April 10, 2010

Attending Social Events

One thing I will give my mother in law a lot of credit for is that she has always included Bil in family social events.  For example, there is an expectation that if she is invited to a wedding,  that Bil is invited too.  Of course, some of that may be due to the fact that he lives with her.

The question you may ask is:  does Bil enjoy doing that?

In a way, I think he does.  I've been with him at a couple of these, or crowded dinners.  It amazes me he would want to come to a wedding reception.  Nowadays, you'd think everyone at a wedding reception has a hearing loss, because the music is always cranked up to unendurable levels.  Has anyone else noticed that?

And, people with autism are well noted for their sensitivity to this type of stimuli.  Heck, I don't like it either and I'm neurotypical.

But Bil sits there.  And I suspect he observes everything, and records it in his own type of way. 

When we come down next, the end of April, my mother in law and Bil will be away at a wedding when we arrive, so what we find out afterwards will be interesting.

Friday, April 9, 2010


I promised I would not talk about Bil's medical problems.  What I'm about to write about is not due to a medical problem, unless you consider aging into your 50's as a medical problem.  For some of us, it is!

Monday, husband and I went with my mother in law and Bil for his annual checkup.  First off:  his medicare doesn't cover annual physicals so she had to write out a check for nearly $200.

My husband went in when the doctor announced the results of the exam.  I stayed outside.

Last year, Bil's doctor (also my mother in law's doctor) wanted a colonoscopy done on Bil.  After all, he had reached 50, and that is what the guidelines say.  My mother in law decided not to do it.  But this year the doctor is more insistent.

My husband has had 2 colonoscopies.  I've had one.  So we can both attest that the prep is not fun.  In fact, the actual exam is a piece of cake (no pun intended) in comparison.

So how is a 50-something man with autism going to react?  Is he going to be cooperative?  Is he going to freak out in the middle?  Plus he was so anxious before this exam-how anxious is this whole event going to make him?

My mother in law decided she wanted my husband (noting here we live 150 miles away) around for the night of the, shall we say, big event, if she does agree to sign Bil up for this.

And I don't know if she will.  With her current physical condition, this is going to be tough on her even if we are there. 

I just don't know about this.

We'll see.

My instincts are to research something like this.  But every one with autism is different-that is why it is a "spectrum" disorder - and other people's experience may not help us much. 

As they used to say:  "Stay tuned".

Saturday, April 3, 2010

Another Fall

My mother in law admitted that she had fallen.....again.

During this past winter, she had a door put in leading from her garage into the house (she has a split level) so she wouldn't have to walk outside from the car.  Because the garage was not on a level with her finished basement, there are several steps.   Recently, she didn't place her foot right and fell on her face.  Nothing broken, just a lot of bruises, thankfully.

I am so worried that her guardian angel is going to die from exhaustion.

The good news in all this is that my mother in law has bil carrying everything now.  All she carries is her purse.  We have to get bil to help her as much as he possibly can.  I think it would be good for both of them.  In some ways, maybe even better for him than for her.

Getting back to the fall: It could have been worse, especially as long as she is stubborn about wearing her "I've fallen" emergency pendant.  And I still worry that bil won't be able to get help for her if she needs it.  If she would wear the pendant, he could learn to press the button.  He wouldn't have to talk to anyone; the monitoring service would send help.

But she still doesn't wear it reliably. Sigh.  I will be curious to see if she is wearing it when we come down tomorrow.

In Memory of April 3, 2009

What a beautiful, sunny day today.   Our crocuses are up.  Neighbor's forsythia is blooming.  Spring has come to the Southern Tier of NY.

Tomorrow we see my brother in law and catch up with his life since March.

Life goes on.

And....  One year ago, our community suffered a random act of violence that took the lives of 12 recent immigrants, a teacher and a dedicated social worker at the American Civic Association in Binghamton, NY.

Our local paper had a very nice commentary.  I will let this commentary speak for me.

This is in memory of the victims of the shooting of April 3, 2009.

This doesn't have any direct tie to autism but I wanted to mention this because it impacted our community so heavily.

Tomorrow is Easter, with its religious symbolism of rebirth.  But for today, the thoughts of our community are with the families of the 14 victims of April 3, 2009.

Friday, April 2, 2010

What Does Autism Look Like? World Autism Awareness Day

 Today is World Autism Awareness Day.

In April, the May Institute’s Autism Public Awareness Campaign will take place on Boston's  MBTA Transit System (the "T") to alert riders of Boston mass transit about Autism Spectrum Disorders.  Part of this will be an exhibit of the "Faces of Autism".  The photography studio, Andrew Child Photography, has a site on Facebook if you are interested in more information.

In addition, information for caregivers of children with autism who wander (a very big problem, and one that the general public does not have a good understanding of) will be presented.  Years ago, I worked for an independent insurance agency and at that time the LoJack system was mainly to help recover stolen autos.  I am so glad they have branched out into this field.

The Macon Shutterbugs

Last weekend, we attended the Macon Cherry Blossom festival in Macon, Georgia and had a great time.

One event that we did not find out about, however, until we saw it on the local news (too late for us) was an exhibition by a non profit organization called the Macon Shutterbugs, who displayed their photos at one of the parks.  Some of the photos were for sale, the proceeds of which would have benefited this organization.

I would have very much wanted to see the viewpoints shown by these special photos.  A hint to the Macon Cherry Blossom organizers:  I did not see this on your material - perhaps I missed it but I hope that if they come again, that you be sure to include this in your promotional material.

Years ago, my other brother in law gave Bil a camera as a Christmas gift.  It wasn't anything he was interested in, and he wasn't encouraged to use it.  Still, I wonder if he had taken up photography as a hobby, what Bil would have produced.

In the meantime, I've also found out about a very special autism photography event, which I will mention in my next blog post.