Authenticity

Authenticity is the daily practice of letting go of who we think we are supposed to be, and embracing who we are. - Casandra Brené Brown

In 2010 Ms. Brown gave a talk at TEDx Houston.  Her profile says:

"Brené Brown studies human connection -- our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity. A talk to share."

If there is one person in the world who is authentic, it is my brother in law Bil, who is developmentally disabled.  I'm not sure he has ever even thought about who he is supposed to be.  He just is who he is.  In some ways, knowing him is a way of understanding humanity.  He doesn't try to be fake.  He doesn't hide who he is.

Some may call it "being naive".  But, with Bil, what you see is what you get.

This isn't to say that Bil never engages in manipulative behavior.  He isn't a saint.  And, really, we do people with disabilities a disservice when we portray them as long-suffering people that are just a step away from sainthood. And, I would not be authentic myself if I didn't admit that I don't always like him.  He isn't an easy person to know.

But Bil doesn't pretend to be something he is not.  

So, it hurt Bil when he got some bad news this week.  He is no longer eligible for his day program.  And why is that?

Because he has made strides in it, enough that he is no longer impaired enough for them to justify him attending it. But it hurt the program director when she had to tell us.  If things change, she told us, we would take him back in a heartbeat.  We love Bil." And Bil liked the program.

So now, the hunt is on for a different program.

Bil will be Bil, and maybe he will end up thriving in his new program. So again, Bil, who dreads change, will have to face another change in his life.  The Unfamiliar.  But a change that, we hope, ends up being for the better.

Join Sanch Vee and other bloggers at #FridayReflections.  The prompt is at the top of my post.

Bil's Mental State?

I think Bil is depressed.

I think he wants to be out and about in public.  He wants only limited contact with people, on his terms, but he wants that contact.

He needs that contact.

I can not believe that, after Hurricane Sandy, that my elderly mother in law returned, from a safe place we had arranged for her, to her house (which wasn't damaged, but didn't have power.)  She was intending to stay there, in the dark, perhaps for days. A number of family members begged her not to do this.

She wouldn't listen to any of us.

And, of course, Bil went right along with this. What choice did he have?

Fortunately, after several hours in her dark and cold house, she saw reason, and children of one of her friends whose power had been restored, came and got them both.  


We have to give Bil a chance to live a full life.  He isn't getting it with his mother any longer, not because she doesn't love him, but because life has become too much of a struggle for her.

What a stubborn old lady she is.  It's served her well but now is just hurting her.

AND BIL.

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.

The Role of the Weather Channel

Yesterday, I blogged a little about Bil's habit of,when visiting one of his relatives, just disappearing into the nearest room with a TV and watching the Weather Channel.  He comes out only for meals - and, may I add, he has a most uncanny ability to know when food is ready to be served. (makes you wonder what kind of cues he picks up on.)

I've always been interested in knowing: What happens if there is no Weather Channel?

My mother in law found out the other day.

She decided to visit a friend, and took Bil along.  The friend is someone Bil has known for years.  Bil has met her time and again. But I'm not sure Bil was ever to her house (or apartment, I am not sure).

Anyway this friend of the family does not have cable TV.  So Bil had to sit there.  The friend was a gracious host and served a very nice meal. (Have I mentioned how much Bil likes to eat?) I'm sure she is very kind to Bil as she always has been.  She knows the type of person Bil is.

So what happened without the Weather Channel?

Bil was very uncomfortable the whole time and couldn't wait to leave, or so my mother in law told my husband after the incident.

This isn't a "Rainman" situation where a show was coming on at a certain time, and Bil had to see it.  Although, on a trip we took with my mother in law and Bil once, I saw that in action.

I will blog about that another time.

The Friends Network

Something that Bil's Medicaid Service Coordinator suggested we look into for Bil is something called The Friends Network.  She told us it was for people who are high functioning (which Bil is considered.)  It encourages socialization, obviously.

On the surface, it sounds wonderful. But I think Bil is going to need a lot of support to participate.  And if it is presented to him, and he says no, will they just let it drop?  Sometimes the new emphasis on "People First" frustrates me.  Bil's wishes should definitely be taken into consideration but he is going to resist anything that is new, period.

Quoting from their website:

"The mission of The Friends Network as a not-for-profit organization is to maximize opportunities for individual choice, to advance independence, and to develop circles of support through a person-centered approach in the areas of social relationships, recreation, life management skills, community integration, and vocational services for adults with developmental disabilities."

What I hope is that Bil will be given the opportunity, encouraged by those who know how to communicate with those with autism, to "get his feet wet".  Just one outing that is pleasant to him - who knows.

Even if he doesn't interact the first time, even if he stays on his own-he will still be absorbing.

I wonder how we can make this work for Bil.

What I hope

The More Things Remain the Same....

Another visit with Bil and my mother in law concludes 

Incident:  It was dinner, and my sister in law had set up a table with food so we could all serve ourselves. Bil is always served by his mother.  So of course he expected to be served.  My sister in law told him he needed to get his own food.  (Even as her mobility deteriorates, and he is supposed to be helping her, it sometimes seems years of habits on her part just don't change.  Not that I don't realize how hard it is to break habits, but she has to let him develop some independence!)

Outcome:  he did get his own food.  But the next time we had dinner, the scenario replayed itself.

Incident:  Family socializes in living room, and just a few feet away, Bil sits by himself and watches The Weather Channel.  Family member tries to get Bil to sit with us.  Bil's mother asks Bil to sit with us. 

Outcome:  Bil reluctantly sits with us, for perhaps 5 minutes, then back to the Weather Channel.  My mother in law makes an excuse that he is anxious about the weather (there is a chance of rain). 

Incident:  Every time we see Bil, you can see the weight gain.  Bil still will not exercise.  His excuse is his asthma.  And now that my mother in law finds it hard to do things like mall walking, he is getting even less exercise than before.  He also has a sweet tooth.

Outcome:  I truly believe my mother in law is trying her best, and fighting a losing battle that she doesn't have the energy to fight.  I have no idea how to get Bil to move.  I am truly worried about his health.

I will write more about the exercise issue tomorrow.

The Blindness of Blindness

Instead of autism, I want to blog today about blindness.  No, not the visual disability, but the attitude of people towards those with disabilities.  (Throughout this post, I will use the term "blind" as that is the term I grew up with.)

There has always been a fear in the back of my mind that one day I would go blind.  I don't know at what point it started, but as long as I remember, I did not have good vision without glasses.  It wasn't noticed until I was 4 years old, when a friend of my mothers noticed that I would watch TV with my nose practically up against the glass.  Fortunately, my extreme nearsidedness was easily corrected with glasses.  But each year (this was back in the 1950's) my parents would get a mailing each summer, while school was out, offering services for the blind to me.  This was back before IDEA so I suspect what the mailings concerned was me going to a school for the blind.  In those days, that is how the school system dealt with blindness-send the children away.

At least in New York they were trying to educate them, which wasn't true for all disabilities.

As I grew up in New York City, I'm pretty sure that I would have ended up in a school for the blind in NYC.  But for people in upstate, the choice may have been a school in Batavia, NY.

By the time I was 11 my uncorrected vision would have been enough to classify me as legally blind, and I wore glasses full time.  All I have to do, to experience blindness, is take my glasses off.  How lucky I am that a low tech solution was available to me.

As I've blogged before, things were very different for people with disabilities in that day.  Some people are so nostalgic for the 40's and 50's but there was a lot of ugliness right underneath the surface.  And the blind people of that era paid a horrible price for that prejudice.  But I did not really understand it until a few days ago.

Someone I know (not well, but I know a very good friend of his) suffers from a medical condition, which left him blind about three years ago despite a last ditch surgery up in Syracuse, NY.  He retired (he had enough service in and he was in his early 60's anyway) from his job and ended up working at a place in downtown Binghamton, which (this may be unfair) may be on the order of a sheltered workshop.

What I did not know, until a few days ago, is that this man actually was born blind, spent most of his childhood blind, and went to that school for the blind in Batavia.  At some point in his growing up, a series of surgeries gave him a degree of vision, and he was able to work in the "usual" workplace. He's never seen well enough to drive, but that never stopped him.  He's a lovely person.  He has friends.  He has a good life.

But now he was in that place for the blind, you know, the place where the blind people work.   And he was - horrified.

So many of the people there - how do I put this delicately, in a "correct" way - have problems.  No, I don't mean visual problems.  I mean mental problems.  They are "off". They aren't right.  I've seen some of them on the bus when I ride to work in the morning.

How could that be?  Blindness is about the eyes not working, about the brain not getting vision signals from the eyes or not being able to process them right.  It is not a "mental health" condition.  Or is it?

He talked to his boss.  He had to understand.  He was struggling to adjust.

His boss told him, "You were fortunate.  Your parents were able to raise you with the advantages.  You weren't abused.  They did whatever they could for you.  (the school in Batavia, at least now, is private, so who knows how much it cost.  In those days there was no federal law guaranteeing a free, appropriate, PUBLIC education in the least restrictive environment.) You were surrounded with love.  They sought out doctors for you.  They wanted you to succeed.

Most of your co workers didn't have that growing up, his manager continued. 

At best, they were neglected.  At worse, they were abused.  They became warped.  That's why they have mental problems.  That's what happens when children aren't loved.  That's what happens when children with disabilities aren't accepted, aren't treasured for their other talents, when people can not see past the blindness and think they are stupid-or worse. (I won't even use the "R" word.)

This is how visual impairment changes a person.  They aren't born like that.  It comes from the attitudes of their society, their family, from the people they interact with.  It isn't from their lack of vision.

My acquaintance understands.  He is trying his best to adjust and accept.  He "doesn't" have to work, but he wants to make some money on the side, and this is the path he has chosen to get that extra money.

What a waste.

And again, it makes me think of Bil, of his suffering when he was younger.  If he hadn't been in a family that loved him, who knows the path he may be walking now.

How About Those Mets!

During our recent stay, Bil came up from his room as his mother and we sat down to breakfast.

He has a radar for meals (always has had the ability to sense when a meal is about to be served.)  You rarely have to call him.

Usually, Bil will have little to say.  He will stay until he finishes eating (although I know he is observing everything around him), sometimes smiling to himself.  Then he will wordlessly get up and leave.  Never tries to help clear the table.  His mother had never insisted on it while she was younger, and she admitted to me not that long ago that it was "more trouble than it was worth" to try to get him to help.  I don't try to insist, either, although I have a nagging feeling that I should try more.

But today was a little different.

The first thing he did was update his mother on how the New York Mets did the night before.  She's a Mets fan also.   But in all honesty I think he would update anyone who was there, whether or not they care about the Mets.  And it seems lately, he's more and more eager to do the updating.

Bil has several "special interests" and the Mets are one of them.

With him, it remains conversation and watching on TV.  Bil's had chances (through his local ARC) to go to Mets games, and he never wants to.  Sort of like his love affair with the weather. Great if it stays on the Weather Channel. If it rains, or thunders near him - he doesn't like that at all.

Let's go Mets!

Bil and the Birthday Party

It's been a very eventful week, including a medical event (nothing serious, just painful) and being out of town.  But, we did spend last weekend with Bil as our houseguest, his mother staying in a motel nearby.

It went well, I think.  I'm glad Bil is choosing to sleep, when out of town, away from his mother, but the way he thinks, I don't know exactly what his motives are.

The reason why Bil was staying with us was so Bil and my mother in law could attend a party.  At the party, for a family member, Bill sat apart from everyone until his mother coaxed him into sitting with the rest of us. 

This was the second party in two weeks that Bil and us attended.  This one was at a restaurant.  The previous one was at a relative's house (a birthday party) and Bil, again, just sat away from everyone.  We saw him wandering around a little.  I was concerned about noise levels (it was very echo-y in that house and even I was being disturbed by it-I do have some sensory defensiveness issues myself) but Bil made it through.

I don't think he really enjoys these kinds of situations but he tolerates them, I think, because he wants to be included in the fun.  And, for all my complaints about my mother in law, I will say that she has always encouraged him to be with her at these events.

We probably won't be seeing Bil again until Easter.

Bil and the Magazine

I don't know that I handled this correctly - I am still mulling it over.

Last month, when we visited my mother in law and Bil, my husband, mother-in-law and I were sitting in the living room.  Mil and husband were watching TV and I was paging through the TV guide magazine.  It is Bil's magazine-he pays the subscription - but it is mainly my mother in law who uses the magazines.  I don't get TV Guide at home and I like paging through them.

At one point I got interested in what was on TV and was watching TV with the TV guide in my lap.  For some reason, Bil came upstairs from where he lives, which is in a room in the finished basement/recreation area.  He usually doesn't come up unless he hears dinner being ready.  With his supersonic hearing, he always arrives exactly as dinner is being served.   Eats and leaves, and then comes back exactly in time for dessert.  Otherwise he never wants to socialize.

So I don't know why he came up, and picked the TV guide right out of my lap, looked at it for about a second, put it back, and left the room.

Was it because he wanted the TV Guide but didn't want to ask me for it? (meaning he would have to engage in social interaction).  But obviously, he did not realize that reaching into someone's lap, especially a someone of the opposite sex, is a no-no.

I didn't say anything.  I was a bit stunned (this was a first time behavior on Bil's part) and didn't react fast enough.

If it ever happens again though - I will have a response ready.

Social Interaction

You don't have to have autism to feel, sometimes, that social interaction is like a gigantic minefield.

I sometimes feel like that-a lot.  I'm introverted, and sometimes I would just rather be by myself.

Bil, though, takes it to an extreme.  I guess that goes without saying for anyone with autism.

Recently, though, I read a blog post that seems to say it all.  With funny pictures.  If you explore her blog, it will be time well spent.


I do keep thinking of the last time we were together with Bil (almost a month ago! time flies-but we will be seeing him again in about a week, everyone's schedules willing) and he actually came out and stayed apart from us, but close enough to observe us, when our family was all together on a porch, visiting.  That's the first time I've ever seen that happen.  We didn't encourage him at all, he did this on his own.

It may have helped that he was not at home.

I do wonder though, if my mil does need to have surgery, if he will come out any more from his shell if he ends up having to spend time up here with his two brothers.

I'll probably have more to write about after our next visit.

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.

An Autism Valentine

During my brother in law's recent visit, he asked if my son would like a valentine from him.

My son is a young adult, soon to leave the teenaged years behind.

My husband laughed and said, "no, at (son)'s age, he should be getting a valentine from a girl."  And that was that.  (We were curious and asked if he gave his Mom a valentine, and he said no.)

I don't know if anyone has ever explained Valentine's Day to him.  But the way it is merchandised now, I can see where he gets confused.

After all, I play an online game called FarmVille.  For the past week, friends have been exchanging valentines with each other.   I wonder what my brother in law would think of that.