Where Do I Need to Be?

I may not have gone where I intended to go, but I think I have ended up where I needed to be.” – Douglas Adams.

I look back at my life - some personal reflections.

Before I ever met my now-husband of over 40 years, I was the daughter of a man who had suffered a traumatic brain injury before I was born.  It left him suffering from seizures and an occasional attack of rage.  My parents both tried to hide it from me (that kind of condition was considered shameful as I grew up in the 1950's) but, you can't hide a seizure disorder from a child forever.

And once I knew, and grew older, I saw the discrimination my father faced, because he had epilepsy.

Later, when I met my husband, I was well aware his youngest brother had a disability.  But still, it hurt when my future father in law rejected me for various reasons, among them having a father with epilepsy. 

Now, many years later, my father in law is dead, my mother in law is in her late 80's, and my husband is his brothers guardian.  And what am I?  Well, the life I am leading is not one I ever dreamed about as a little girl.

I don't fit into any ready category.  But, indeed, I feel that my life experiences (many of which I have never blogged about) have brought me to the place I need to be.

Among them, an advocate for my brother in law and, perhaps, in some ways, a trailblazer for the some who will come after me.

Linking to #FridayReflections, a weekly meme hosted by Corinne and Sanch Vee.

Bil Speaks for Himself

It was something to see.

I would almost call it a miracle.

Bil knew that someone was coming to my mother in law's house to access her physical condition.  Normally, if a stranger had come to the house, he would have hid in his room.

Not this time.

Bill sat on a chair, near the recliner my mother in law uses, as the person interviewed my mother in law.

At one point she denied having fallen for almost a year, and Bil immediately corrected her, listing times she had fallen, and one time she had tripped.  He named dates and places.

He left at one point, but came back a few minutes later.

He stayed there for almost the entire time.

My theory is, he is deeply concerned for his mother in law, and sensed this person was there to help.  He still wasn't able to articulate his thoughts, but the fact that he stayed, and the fact that he wouldn't let his mother lie, I think spoke for herself.

Good for him.

If only we could wave a magic wand and give him typical abilities to interact with people.  What might we see?

But last week, Bil spoke for himself.  And I was so proud.

The Miracle of Communication

We got tired of trying to interact with all the government agencies that are supposed to be helping Bil and my mother in law.

We hired a geriatric case manager.  It wasn't cheap, but it was worth it. She assessed my mother in law yesterday, with Bil present. (I will write more about Bil's behavior during that assessment this weekend.)

My mother in law made excuses.  I can't do this because....I don't want to try, because....but this person had a comeback for every one (some funny, some compassionate) and she did this in such a way that my mother in law immediately bonded with her.

It's all in knowing how to communicate.  This woman could communicate with my mother in law in a way that none of us know how.  We need to learn this skill.

The arguments she uses with us didn't work with this skilled woman, who has been doing this type of work for years. 

The assessment is:  my mother nedsto move.  She needs to regain whatever strength she can.  She needs to socialize more.  There will be ways to do both at the same time.

I think we are going to FINALLY start to make some progress, all because of a skilled communicator.

And, as a plus, she is going to help with Bil's situation.  Not just my mother in law's.  She is going to make some phone calls.

I hope they get returned.

More thoughts on Autism and Compassion

As I've blogged recently, Bil has found himself in a caretaking role for his mother while she recovers from an injury.  He does help if she directs him to, but the question I've wondered about lately is - how much compassion can a person with autism be expected to show?

This recent blog post by Donna Williams, a woman "down under" with autism, gives us an intriguing clue.  As does the fact that one of the links on her blog is to The Hunger Site, one of several related "click and give" websites.  I would dare say that Ms. Williams not only cares about the homeless, but has come up with some intriguing "outside the box" thinking regarding how everyday people can help them.

So what does this have to do with Bil?

Because Bil's autism causes him to have a lot of difficulty communicating with neurotypical (non-autistic) people, it can be so hard to judge how Bil thinks, and how he perceives the world.  Donna Williams provides a small window into that world, but so much about Bil remains a mystery, even as he tries to help his mother the best he can.  Or so we hope.  Does he feel trapped?  Does he understand her situation?  Is he scared?  Or is he oblivious, on many levels, to what is happening to his mother as she ages?

We will be down there again next month, to help out some more, and to observe.

The Pattern Continues

Another emergency.....another pattern continues.  Like an afghan under construction, each occurrence makes its own pattern in the tapestry this story is weaving.

My mother in law starts her recovery from her latest fall.  According to her doctor, the swelling will last perhaps another two weeks, and the pain another few weeks after that.

Bil helps.  He helps under the instructions of my mother in law.  She asks simple things (bring me this, Bil, hand me this, Bil.) He's helped, I understand, with setting the table with meals, with carrying things, with bringing things to her.  However, I know it would be impossible for him to do a lot of things without a lot of training, something we don't have the luxury of time to do (living 150 miles away).

We are fortunate that relatives closer to her than us (mileagewise) have installed a toilet seat with handles, a better grab bar (we'll see more of what they did when we go down-hopefully next weekend, weather permitting) and other things we would not have thought of.  These relatives have a lot more experience taking care of their parents (now all deceased) than we have.

The other fortunate thing is that the relatives in question have a good relationship with Bil.  They praise him, they talk to him in terms of him showing his love for his Mom by now turning around and being her helper.

What I want to see, though, is that Bil is given all the opportunities to help that he can.  My mother in law is fiercely independent and I don't know how she feels about their relationship changing, about the son needing to caretake.  We neurotypicals struggle with that change in relationship; how will Mil and Bil deal with it?

And, we know he loves his Mom but how much can we expect of him?  Only time will tell.

Can a Man With Autism Help His Elderly Parent?

The answer, to our delight, is "yes".

I had the opportunity to chat with a family member who spent a lot of yesterday with my injured mother in law.

When my mother in law had a dizzy spell and fell over the weekend, Bil was in the house.  He heard her yelling (it did take him a while as his bedroom was two levels down from where she fell) but he then came and got the phone for her, and she called 911.

The family member also reported that Bil is helping her by fetching objects, and showing (to the extent he can) a degree of concern.

This gives my spouse hope that he would be able to teach Bil to check on his mother if he can make it part of Bil's routine.

Of course, I tend to be a little more pessimistic.  Bil did not do any of this under his own volition.  She wasn't wearing her medical alarm pendant, so if she had been knocked unconscious, or unable to speak, I still don't know if he would have called 911, or (this sounds harsh but this is how autism can be) if he would have waited until he was really hungry, or if his routine was otherwise somehow disrupted, before reacting. 


My mother in law feels she doesn't have to wear her medical alarm if Bil is in the house.  She has so much faith in him.   I don't doubt they have a very special, almost symbiotic, relationship,  But as to trusting that Bil could call 911 unassisted.....

I think that is wrong, and could have a tragic result.

But I am very, very glad that he is helping out under her direction.  We are 3 hours away, in the middle of winter, there was a snowstorm last night, and we might not be able to get down right away there if, heaven forbid, something bad happened.  I hope she uses his help as much as he can give it.  I've been injured in the same way as she has been, and it was no picnic.  She needs, and deserves, his help.

Would you like some of my Orange Juice?

Yesterday was Memorial Day.  My husband, mil, Bil and I got into the car and visited a couple of cemetaries after having breakfast.  Part of Bil's breakfast was a container of orange juice.  He didn't finish it and took it with him.

The first cemetary was just a few minutes away from home (my father in law's grave) but the other one was over 1/2 hour away.

By the time we got done, it was already quite warm.  On the way home my mother in law started wishing for a "large glass of ice cold water."  She repeated the request.  I offered to stop at the next exit and get her something to drink, perhaps buy her a container of cold bottled water.  She turned me down and asked that we continue home.

My mother in law was sitting in the front passenger seat.  Bil was in the back.

Hesitantly, Bil started to speak.  I don't remember the exact words now but it was something like "Mom, would you like some of my orange juice?"

Keep in mind that Bil has autism.  There is a belief among those who aren't familiar with people with autism that people with autism don't care about others.  This isn't true at all.  There are several difficulties involved and I have made comments in this blog that Bil many time treats his mother like some kind of caretaking machine. I will admit that.  But, I have to tell you, this was the most concrete sign that Bil had ever given that he cared about his mother's discomfort.

(P.S. she turned the orange juice down. As soon as we got back to her house I ran, got ice, and poured her a glass of ice cold water for her and one for me.  It sure was good going down.)