Showing posts with label Life Skills. Show all posts
Showing posts with label Life Skills. Show all posts

Friday, May 25, 2018

The Sheltered Life #FridayReflections

My autistic brother in law, Bil, spent much of the years of his adult life, sheltered, in either a sheltered workshop (where he made less than the minimum wage) or, in his bedroom.


That has changed in the past two and a half years, after his two brothers moved him (and his elderly mother, now ailing) up to be near us.

We had better programs here - no reflection at all on his mother, who did what she could raising him in an age where there were few services for people with autism.

Sheltered workshops no longer exist - and as a result, my brother in law no longer works.  One adjustment.

Sometimes, I am in awe of my brother in law.  He has had to make so many adjustments in so little time.

There is another one coming, as his mother will be transitioning from rehab into skilled nursing in the near future.  She needs 24 hour care for an ailment and won't be able to return home after three hospitalizations in a month's time.  And now, we have a month to clean out her apartment, including the room that was once his shelter.  Three moves in less than three years.

"Bil", earlier this year, moved into what is called supportive housing, and now is experiencing life on his own (with a roommate, and support, but still on his own).  How daring can that be, in your late 50's?

He has the chance for independence, finally, and I hope he has the daring to take full advantage of it.  So far he is taking baby steps - and what else would one expect, when the door to independence of a sheltered life opens?

But, sooner or later, there will be still another leaving from his sheltered life, when the mother who cared for him for almost 60 years takes her ultimate journey.

What will happen then?


Today, on #FridayReflections,I am writing from the prompt "A sheltered life can be a daring life as well. For all serious daring starts from within. - Eudora Welty"  Join Shalini and Corinne at Everyday Gyaan, and contribute your own #FridayReflections.

Friday, April 20, 2018

The Pay Cut

"Bil" gets a service called Community Hab.  A community hab provider takes Bil out into the community to provide him opportunities for socialization.  They work on agreed on skills, such as money management.

A particular woman, let's call her "A", has worked with Bil for around two years now.

This woman has opened up Bil's world.  She hobbled around on a bad foot for months taking Bil places.  She's been dependable, and a support to Bil at certain stressful times in the past few months.

It's not an easy job.  I work with someone who works part time as a community hab provider.  She's had situations where her client has been tormented, for example, at the local mall, by young people calling her client names.  I don't know if this has happened to "A" or "Bil", but these providers are trained in how to react to such circumstances.  Or, if their client has a medical emergency while working with them.

Recently, "A" was rewarded for her hard work.

"A" received a $1.50 an hour pay cut for a job well done.

Yes, you read right.  A pay cut was her reward.
Why?

Well, the agency that employs her has lost funding.  They have to cut costs.  These people are not paid well as it is.

Yes, this is how we reward those who work with our most vulnerable populations.

Tuesday, April 11, 2017

Independence #atozchallenge

All of us want to be independent.  For some of us, independence comes naturally.  For others, it can not be achieved without a lot of help and support.

My autistic brother in law Bil wants to be independent, or, at least, to live by himself once his mother is out of the picture.  The fact that he is autistic does not mean he can't be independent - many on the spectrum do live independent lives.  But others can't.  Overall, given his skills, abilities and personal challenges, people who work with him feel he won't get there without a lot of work and effort.

The question is - can he ever achieve that?

He's always lived with his mother (with his parents, before his father died) and has had his Mom to do things for him. To cook.  To clean.  To do laundry.  To transport him to the shopping outings he loves.

Two years ago, his Mom had surgery, then experienced complications and had to be hospitalized and in rehab for about five weeks.  Her driving days ended - her last drivng experience was right before the surgery.  It was an interesting time. During that time, we moved Bil and his Mom up here to be closer to family.

During Mom's hospitalization and rehab,  Bil did not want to temporarily come and live with us, or the other brother who lives in this area.  Instead, he wanted to stay in his apartment.

Quickly, we learned some things.

Garbage had been left the day of his mother's appointment (she went from that appointment right to the emergency room).   The day after the hospitalization, we walked into that apartment and almost passed out from the smell. We had forgotten about the garbage, and Bil was oblivious to the smell, or the fact that the garbage hadn't been taken out.   One of his jobs around the apartment, incidentally, is to take out the trash.  Without his Mom there to prompt him, he never did it.

That wasn't all.

We had to spend time encouraging Bil just to answer the phone.  We would visit daily but also would call from time to time to make sure he was OK. 

We had already known, in food shopping (because he loves to go to stores with us) that he has no clue about the prices of food.  If he wants blue cheese (one of his favorites) he will just pick some up, not even looking to see if it is the $10 lb type or the gourmet $50 a lb type.  This man who lives on Social Security disability has no clue how to budget, because no one ever taught him.

We are trying to get some of these skills developed in a program my husband was just able to get for him, called Community Hab, but he has to OK the skills being worked on and he said "no" to almost everything when they drew up his plan.

He doesn't understand the connection between the skills and his desire to keep living where he does when his mother finally can no longer take care of him.

Making him understand (we have to assume he can, unless he proves us otherwise) is our next challenge, in between working for a living and being caregivers for his mother.

"I" day on the Blogging from A to Z Challenge.

Saturday, October 22, 2016

If I Ran

The Friday Reflection prompt for today "If I ran the country, what would I do?", makes me think of the thing I fear most about Bil's life.

A Friday reflection on Saturday - why not? Just a day late.  So much runs late in Bil's world, my brother in law who is developmentally disabled.

We've been waiting for months for Bil to be approved for a service that will help him develop some skills that may lead to some independence for him, while working one on one with a service provider.

There is another program we were able to get him into, one that is benefiting him, but I live in fear that there will be budget cuts and the program will be discontinued.

If I ran the country, there would be no such thing as budget cuts that leave the most helpless of our citizens without services they and their families depend heavily on.  Budgets would be carefully written and managed.

Why this dependence on services paid for by government, you may ask?  Shouldn't families take care of their own?

The answer is "yes, but".  In many cases, family involvement in a child's life (including when that child is grown), is not enough.

For example, 21 is a magic age in our society - the age that a person becomes, officially, an adult.  They can drink alcohol.  They gain other rights.

If they are disabled, though, they "age out".  They lose services.  Their families, who have the tremendous burden of caring for them, lose supports.  What if your child has a condition requiring 24 hour supervision, just as one example?  Sooner or later, family members burn out.  Just think of a person giving care to an elderly or seriously ill person, because many of of have done that.  Now think of doing that for the next 50 or 60 years.  Could you? Could anyone?

Bil isn't 21. He's in his 50's. And his mother is approaching 90.  Bil has siblings, but they (for the most part) are older than Bil.  They are aging, too, and are developing health problems.  Fortunately, Bil does not require 24 hour attention or assistance.  But he needs it daily.

So, this is really today's question:

Wouldn't it benefit society to have safety nets in place for individuals like Bil?  Wouldn't it benefit society for people with disabilities to become more independent, to get training in life skills? To have adequate housing?  To have good respite programs for their caregivers?

 As it is, in many instances, neither the disabled person nor the caregiver can't get a good job.  The disabled person's medical overages are inferior - just try finding a dentist who takes Medicaid, just as one example.  People like Bil and their families must fight just to get training for everyday tasks that would make them more independent, less dependent on the taxpayer.

If I ran the country, we would find ways for these individuals to develop, to ease the burden on their families, and to save the taxpayer money.

But, I don't run the country.  And it is likely I never will.  But I still hold out hope for a good future for Bil.

Linking to #FridayReflections.

Wednesday, July 18, 2012

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.

Thursday, June 9, 2011

Learning to use Public Transportation?

Being able to drive is such an important part of American life.  To many with autism, including what I suspect is a fair number of those with Asperger Syndrome, it is almost impossible.  So therefore, enter public transportation.

I am not sure Bil has ever been exposed to public transportation.  He has had (up to now) his mother to drive him.   There is little public transportation where he lives.  The ARC he receives services from provides transportation to and from his sheltered workshop job.

What if Bil had to live with us one day?  Would he ever be able to use public transportation?

I do use public transportation, and the quality in our area (buses only) is somewhat spotty.  But we live within walking distance of a major line in this area.  For Bil to learn to use public transportation:

1.  He would have to know where to catch the bus and where to get off.  I think Bil could learn that fairly quickly, especially if he was using the bus only for one or two destinations.

2.  In our area, (with few exceptions), the buses use a "pulse" system i.e. the buses go to one central area (downtown) you get off, you find the bus you want to transfer to.  Again, I think Bil could handle this.

3.  To use the bus, you must have either exact change or a bus pass.  You must swipe the pass and it must register before you leave the boarding area and sit.  Again, with some repetition, I think Bil could use this.

4.  To signal the driver to let you off, you need to pull a cord.  Again, I think Bil could learn this.  On some buses, depending on where you sit, you might have to press a strip.  Having two alternate methods might be a bit tougher.

But, could he put all the actions together?

Where I am not sure Bil could learn is the social interaction.

1.  I think Bil would want to sit in the same place every time.  That isn't possible, especially on the more crowded routes/times.  I think that would be a real problem.  He has a rough time adjusting to small things like having to purchase a new radio.

2.  What if the bus driver had to engage him in conversation, such as if the pass didn't work right? (that does happen).  I think that would totally throw Bil "for a loop".

And, what would happen if the bus wasn't working right or broke down?  That has happened several times to me, so it is a possibility.  More than once the bus has stopped and the driver indicates everyone must get off.  They do this when there is a bus to pick us all up.  We have to walk to the new bus, get on, and in that situation you don't pay another fare.  I think that would totally throw Bil.

It will be most interesting if we ever have to train Bil to use the bus (assuming he ends up living in this area.)  I sure hope there are trained professionals to help us with this.

Wednesday, October 27, 2010

The Perpetual Memory

Bil....the memory of our family.

Want to know the weather on a date during Bil's life?  Ask Bil.  Want to know the date that a holiday like Easter (a holiday moving around the calendar) in a certain year is?  Ask Bil. 

For him it's not a party trick.  It may well be a function of his brain, which can not work right in so many ways, being able to devote large amounts of memory to other things.

I leaned on this ability a lot when my father in law died, 13 years ago this next Christmas.  I helped my mother in law out by calling various agencies.  And whenever they wanted a date in my father in law's life, there was Bil all ready to give the answers.

Even in the last couple of weeks-I had to help my mother in law fill out paperwork for Social Security.  They wanted to know the date that Bil had last seen a doctor.  Bill had it down - to the hour.  And the visit before that.  And the visit before that.

I know Bil isn't alone in this ability among people with autism.  I just wish I could figure out a way for it to help him, or even to make him a better income than what his sheltered workshop job.

Thursday, May 6, 2010

Bil and the Oven

This past Friday, we visited my mother in law's.  She had been unsuccessful in getting Bil to go to a family wedding because he didn't know many people there.  So when we got there she had already left for the wedding.

She had misunderstood what time we were supposed to arrive and had told Bil we'd be there at 5 - when what we had told her was "between 5 and 6".  A very hungry Bil greeted us-although I was surprised that he was less anxious than I would have expected.

We tried to call but he didn't answer the phone.  My husband left a message.  He didn't try to retrieve it.  Not too many people call that house with our area code.  We had tried to teach him it was OK to answer phones where the caller ID showed our home area code (which our cell phone, of course, would have generated.)

Mom had left directions for us to cook some fish in the oven and heat up some vegetable leftovers.  Problem was - we had nothing to eat for ourselves-we had been planning to stop at a local supermarket to get a ready made meal.

It was a good thing we went to the house first.

We offered to get Bil his own meal and he refused.  So my husband decided we would dash out during the 1/2 hour it would take the frozen breaded fish to cook.  "You can take the fish out of the oven if the timer rings, Bil" he said to his brother.

"Um" I said.  "Do you think Bil knows how to take hot food out of the oven?"

OK, that wasn't going to work.  I had visions of Bil reaching in without even a potholder, and our family would never speak to us again.  Time for Plan B.

All turned out well though.  Bil got his meal, we got ours - and a new appreciation for the skills Bil still has to learn.

Thursday, February 18, 2010

Learning to Plan

One very busy day during his recent visit, my husband ran into a little glitch.

He had picked my brother in law up and then picked me up at work so I could go to physical therapy.  He was going to take my brother in law to Target while I was in therapy.

There was just one problem.  My brother in law didn't realize how long he was going to be away from home.  He takes medication and he did not have it with him.  It never occured to him he should have taken it with him.  So my husband had to drive him back to my brother in law's house (1/2 hr trip) to get it.  It made for a long afternoon for my husband.

I am not sure my brother in law has ever had much reason to plan ahead.  Someone has always done his thinking for him.

What happens when my mother in law becomes ill or worse? Do we take over all his thinking?  I truly do not think that is a good idea.

How do you teach a person with autism to plan?

A while back I had looked in the public library to find if they had books on teaching an adult with autism.  The reference librarian was very interested in helping me but she couldnt' find much, even at other branch libraries, on the subject.

There are books for children but what do you do with an adult who never had specialized education geared to those with autism as a child?  We aren't educators either, we are just caring family members.

More questions than answers in a lot of these posts.

Tuesday, February 9, 2010

Unlocking the Key to...the Key

It's been an interesting few days spending time with my brother in law.

Yesterday husband and I both took the day off work and spent time with my brother in law.  We took him out to eat (one of his favorite activities) and then took him to Wal-Mart, our local enclosed mall, and the Christmas Tree Shop.

When we picked my brother in law up at my other brother in law's house, the house was locked as he and his wife were both at work.  They gave Bil a key.  Their lock is such that you have to lock it from the outside (you can't turn something and have it lock when you close the door).  Bil had a great deal of difficulty manipulating the key; my husband had to walk him through the steps of locking a door.

I have a feeling that was the first time Bil has ever used a key.  But maybe not, maybe the difficulty was this was a new door, a new key, to him.  (I think, though, that my first theory is correct.)

When we returned him "home", same process, Bil had to be shown all over again how to unlock the door.

My sister in law has been using this visit to teach Bil other life skills and I can only hope he remembers them.

I wonder if brother in law can use the skills in another context.  For example, they have a caller ID that displays on the television.  They taught Bil and so when my husband called to let Bil know he was coming, Bil answered the phone.  But would he recognize the caller ID in another context?  That would be an interesting question.

Sunday, February 7, 2010

Getting Bil to Help My Mother in Law Out

Bustling around, getting ready for the Super Bowl (just my family, my brother in laws, my sister in law-son is working) I got to thinking-I've had a lot of help - my husband does the bulk of the cooking-but I've been doing a lot of stair climbing today, which has my arthritic knee complaining, and my back (which I have problems with) is complaining massively, too.

Meanwhile my mother in law, who is in her 80's, and has some mobility issues (a lot due to arthritis too but not all of it) tries to get bil to help.  This has been a recent development, trying to get him to help.  Now, he helps take the trash out, and she "thinks" he would be able to call 911 if necessary (she has fallen several times).  I tend to doubt it. The last time we were down (Christmas) he helped her with some table setting. But in truth, he doesn't help anywhere near what he should be doing, imho.

My other brother in law tried to show bil how to do a laundry and it wasn't very successful.  His wife has succeeded in getting bil to help with simple food preparation (no knives, etc.)  I didn't try to get bil to lend a hand - he stared at the Weather Channel while I opened bags of chips (this sometimes is hard!) and washed dishes, and my husband cooked.

We HAVE to get him to help my mother in law out.  She needs the help.  I am going to post more on this topic another time, as I have to go.