Spring Things - Privet and Bees, Scent and Memory

A memory of over 50 years ago.

I grew up in the Bronx, a borough of New York City, in a city housing project.  All green spaces in the project were carefully fenced away behind chain link fences.  We children would get into trouble with the maintenance men who cared for the project if we climbed the fences and dared to play in the greenery.  So, of course, we did it as often as possible.

In June, the privet would bloom.  

The blend of humidity and sweet privet scent would attract bees to the hedges.

It's a scent I love to this day.

The boys would catch the bees in glass jars.  That's not something we girls really got into.  Instead, we would look for ladybugs to catch.

Yesterday, I visited my mother in law, who lives in a suburb of New York City. We needed to attend a court hearing with her. My spouse's petition for the guardianship of my developmentally disabled brother in law, "B", was finally being heard in court.

It was warm, and humid, and privet hedges were blooming in front of her house.

They were swarming with bees.

The heady scent brought me back over 50 years in a matter of seconds.  I was a little girl once again, climbing chain link fences while we looked out for the project maintenance men, so my playmates and I could have a few minutes of interaction with nature.

Scent and memory. A living time machine.

Has scent ever brought you back to a favorite childhood memory?

A Day a Year in the Making

On and off this month, I've been blogging about my brother in law, "B",who has autism.  He is in his 50's.  I had intended to blog part of this month about our experiences (my spouse and I) trying to advocate for him, with the possibility of one day writing an e-book to help others in a similar situation..  I ended up blogging more about him personally, so you, my readers, could get to know him a little better.

Now, it's time to return to describing our advocacy efforts.  Some of what follows is a repeat of a blog post from May - May of 2013.  It's taken all of this time to get to where we are today. 

For all his life, "B" has been cared for by his mother.  It's time for the big step of "what comes after his Mom".  She is in her mid-80's, and eventually, will no longer be able to care for him.  Or, worse-the inevitable will happen and she will leave this Earth forever.   Last November, she was diagnosed with cancer. It was caught early, and was considered curable with the proper treatment.  

She received that treatment earlier this year, and the prognosis is good.  Right now, she is in remission.  This could have had such a different outcome.  And, that is what we must think about now.

The fact is: "B" does not have a guardian.

If, heaven forbid, she died tomorrow, this is the future the State of New York has prepared for my brother in law and other disabled individuals without a guardian, according to a knowledgeable person we consulted last year. (Note, this is not legal advise, and this may not happen in states other than New York.  I am not a law professional.)  Because, right now, "B" doesn't have a guardian, the following would happen:
 
1. He becomes a ward of New York State;
2.  He can't stay where he lives (if his Mom died, he's the only other person living in the house) because he would be alone, and the state will not allow that.  He is deemed to need 24 hour supervision, and the state can't provide 24 hour supervision where he lives now  So housing must be found for him;
3. the court appoints an "advocate" for him, and it is potluck - could be anyone - maybe a person that doesn't know my brother in law at all;
4. Then the State finds emergency housing for him - "first available bed" which could be something not at all appropriate for his disability, but too bad.
And, by refusing the placement, it may be years before another opportunity comes up.
  We found we couldn't help him without someone becoming his guardian. 
 
People with autism, in the best circumstances, find it difficult to cope with any type of change.  And this, to use a cliche, would be the mother (no pun intended) of all changes.
  Years ago, my mother in law told us last year, she and her husband (dead some 15 years now) were advised to apply for guardianship.  Her husband elected to ignore this advice.  After he died, she saw a lawyer and certain other documents were drawn up but again, guardianship never happened. 
 
The blessing is, my mother in law is still alive.   "B" is blessed in that he has a family who cares for him. We are finding that a lot of older men and women in that situation are all alone. No one cares.
 
So, last summer, my spouse and "B"'s other brother saw a lawyer and started the process for my spouse applying for guardianship for his brother.  In New York, the process is not easy, and it took a long time to get all the pieces together.  It's been an adventure, and today, our petition is finally going to be heard by a judge in Surrogate Court, in the county where "B" and my mother in law reside.  This is all with my mother in law's blessing.  In fact, spouse could not have done it without her blessing.

My spouse's next oldest brother will be the guardian if anything happens to my spouse where he can no longer serve as guardian.  Then, one other sibling (the only one younger than "B") will take over if anything happens to both of them.  In this way, my brother in law will have someone helping him throughout his life.  Or, at least, that's the hope.

Let's hope the court hearing goes well today.  Today has literally been a year in the making.  I hope to blog more about the exact process we went through in the near future, and describe whatever happens today.

Tomorrow, my last Spring Things as we prepare further for the future.  Thursday, I will have another gardening post.  Friday, hopefully, I will be able to report good news.

The Possible Journey

Today, my friend in Brooklyn I've blogged about from time to time is leaving on a jet plane-destination, Scotland, to visit a dear high school friend of hers.

She's ready to go, with the blessings of her oncologist.  She's waited over two years for this day as she progresses through treatment.  Some people might think this type of journey was impossible in the midst of chemo.  My friend disagrees.  It's possible and it's happening.

Cancer itself is a journey - for each cancer survivor, it differs.  Here's another viewpoint, from a blogger in Alaska now being treated for her third cancer since 2008.

In honor of her trip, I'd like to rerun a post from earlier this year, with some edits.  It is a post that talks about something my friend feels strongly about.  It's part of her journey.

The Ugly Stepsister of Cancer

The original post had a picture of a hyacinth. In the language of flowers, hyacinth can mean consistency.  Or, it can mean "I'm sorry, please forgive me."  Today, I rerun the post with the picture of Kool-Aid irises above.  Iris is the flower that says "Your Friendship Means So Much to Me", according to a site called The Language of Flowers. 

It also means "Faith", "Hope", "Wisdom" and "Valour".

Last week, I got an email from someone I had a lunch date with.  She had been in communication with a woman she knew.  That person had "a cold that wouldn't quit." Finally, the person sought medical help.

It wasn't a cold.  It was lung cancer.  And before that woman could blink twice, she was being put into hospice care.  Her family called my friend and told her the woman was asking for her.

It was, needless to say, overwhelming. What do you do when you go to the doctor and find out you have something you never expected?  Well, my friend broke her date with me (good for her!) and went to her other friend - one who is suddenly making the acquaintance of the Ugly Stepsister of Cancer.

I decided to go to the library, now that I was without a lunch date. I found a wonderful book there, written by a local (well, from Ithaca, but Ithaca is only an hour from where I live in upstate New York) breast cancer survivor, called "When Your Life is Touched by Cancer". The author is Bob Riter. 

Yes, the author is male and is a breast cancer survivor.  Yes, men get breast cancer.  And, in fact, my spouse is at risk due to his family history.

There is one cancer that Bob Riter, who has worked with cancer patients as the executive director of The Cancer Resource Center of the Finger Lakes, calls "The Ugly Stepsister of Cancer".  It is lung cancer.

Lung cancer patients bear a burden no other cancer patients bear.  They find themselves required to explain their cancer, over and over.  "Do you smoke?"  "Did you smoke?" they are asked when they tell others of their cancer.

If no, the patient has to explain that yes, some 15% of people who get lung cancer never smoked.

If yes - well, the cancer is their fault.  No support for you!

Why, ever, would we EVER want to blame someone who has cancer for their cancer?  But my friend has been through this, and now my friend's friend will have go to through this, too.

Also, last Tuesday, I gave four trees to a work friend who lives out in the country to plant in honor of a late neighbor, who died while I was on vacation in April.  I can still remember the day he told me, matter of factly, that he had cancer, and how he was trying to make his peace with it.  (And no, I won't describe "his battle", because that's another thing Bob Riter talks about.)

Finally, last Tuesday, my mother in law found out that her cancerous tumor is dead, but she still needs testing to make sure the cancer didn't spread.  And, meanwhile, she has bills coming in.  She's elderly, she does not have boundless energy, and she asked us to help investigate some of the bills.  She seems to be falling through the cracks of help. Wrong cancer. Wrong place of residence.  Wrong wrong wrong.

Cancer has been on my mind a lot lately.  So what I did was....email Bob Riter.

And he emailed me back!

What a marvelous person, and the people of Ithaca, New York are so lucky to have him in their lives.

He gave me some starting points with which to help my mother in law.  And, he recommended that I give my friend with lung cancer a copy of the "Ugly Stepsister of Cancer" essay. He's generously posted it online for any of us to read. (To my friend,  I'm sending her the essay.)

If you have cancer, or have a loved one or friend with cancer, I highly recommend this book.  It is a treasure.  It covers so much, in simple language and in easy to read bites.  Bob Riter has thought of everything.  Well, everything but the line of Hallmark cards I'd REALLY like to see, but that's a blog post for another time.

 And now, I hope I don't have to talk about cancer again for a long, long time. But, sadly, I know that is not going to happen.  So, today, I will say "have the trip of a lifetime" to my friend.  May this trip be the most wonderful of your life.

Garden Bloggers Bloom Day June 2014-The Clouds and the Flowers

I was up early this morning, here in my zone 5b garden near Johnson City, New York, because I knew the sun wouldn't be out for long.

We've been having a rainy spell, with little sun.  So here I was trying to get some flower pictures in the early morning sun, to post for Garden Bloggers Bloom Day.

For example, these heirloom petunias, with an upright growing habit I love.

Our first dahlia.

Chives towards the end of their flowering period, in my herb bed.

Allium bulgaricum.
 

Pansies and coleus.

But other flowers were not in the sun.  My last Kool Aid iris, which hung on just long enough for GBBD, allowed me the opportunity to take one last sniff of its heady, grape kook aid scent

Our wild rose, never planted by us, started to open its blooms Friday.  Here it was this morning.

In our back yard, our purple columbine still has some blooms. (this picture, taken at its peak, and in better light.)

The yellow bleeding heart, in the background, is still going strong this morning.

And, inside, a couple of flowers, too. One of my african violets, the only one blooming today.

And finally, a new flower for me.  Oncidium, an orchid. I bought this at our local flower show in early spring, with just the beginning of a flower spike.  The flowers came out earlier this week.  Now to see if I can get it to rebloom.  My two palenopsis orchids did re bloom, but one only gave me two flowers, and it didn't last long.  I think both need to be re potted.

I hope sunny weather will come our way again soon. Sure enough, our clouds for the day have gathered, and I'm happy I didn't tarry in my photography.

Please visit other gardeners participating in Garden Bloggers Bloom Day, and find out what is blooming all over the world today.

Sustainable Saturday - The Journey of 1000 Miles

Last year I blogged about the possible decline and fall of the Binghamton, New York downtown farmer's market.

Venders were leaving. And, not only vendors were leaving.   Binghamton, a city in upstate New York of around 47,000, once had nearly 80,000 residents.  Hard times had struck some years ago with the decline of major employers such as IBM (which started in Binghamton) and Endicott-Johnson. Ten years ago, even five years ago, many buildings in downtown Binghamton were vacant.

Now, Binghamton (including the downtown) is in the midst of reinventing itself.  But sometimes, it seems like a journey of 1000 miles, which has not gotten that far yet.

I've always maintained a strong local downtown farmer's market (with emphasis on "local" - we do have local farmers here) can be a key to the health of a community.  I've seen it first hand. I point to Fayetteville, Arkansas.  Ithaca, New York. Asheville, North Carolina.  Charleston South Carolina. The farmer's market on Union Square in New York City.  (I note here that, for some of these communities, the downtown markets are not their biggest. But all of them are vibrant.)

A neighborhood not that far from downtown Binghamton, New York is a food desert. Many years ago, I lived in that area (the North Side of Binghamton), before it became a desert.  So this is a subject close to my heart.

Last year, I had spoken to a person newly associated with the downtown Binghamton market about my concerns.  There was a vendor who obviously was not selling his own produce - plums in June, here, are just not local.  Yet, he seemed to dominate the market.

Yesterday, I returned to the downtown Binghamton farmer's market for its second session of the year and saw some major changes-all good.  I spoke to a favorite vendor and got the scoop.

The vendor who was obviously selling non local produce is no longer there. He was caught, I was told, buying produce from a local wholesaler, taking off the stickers you find on commercial produce, and selling it at market.

This is what I did find.  VINES,"Volunteers Improving Neighborhood Environments" will be concentrating their efforts on the downtown market this year.  They are dedicated to eliminating the food deserts within Binghamton by use of urban farms, community gardens accessible to the community and other improvements.  LOCAL!

Closer to the Heart, who sells only their own produce. (why this picture won't permit itself to be rotated, I have no idea). I've bought from them many times at the Otsiningo Park Farmers Market so know they are LOCAL!

Sunny Hill Farms. My friend has bought their honey for years. Another friend loves their rhubarb.  LOCAL!

I couldn't get a good angle for a shot, but a vendor that has been to the market for years, Full Quiver Farm, is back.  I've purchased their breads.  LOCAL!

And, finally, a new vendor, Fojo Beans.  I hope they can make it at market, because the beans, while high quality, are pricey for the Binghamton market, I fear. (I hope I'm wrong).  Local coffee roaster!

It's a small start.  But perhaps, a single step in that 1000 mile journey.

Tomorrow - Garden Bloggers Bloom Day.  And this coming week, a mix of flowers and autism.  I hope you enjoy what I have planned for you.

Physical Fitness and An Adult With Autism

Every year, our local "Y" sponsors something called the Corporate Challenge, where people from different companies in our area compete in a number of road races for the fame and glory of themselves and the company they work for.

In 2009 I wrote the below post.  Yesterday, I completed my eighth Corporate Challenge.  I still walked the predicted mile, where you guess your time and try to walk the mile in your exact time.

Once again I didn't win. 

Last year, the event was postponed due to rain, the first time that ever happened.  While cities in Texas ponder if they should drink their toilet water (no, I'm not linking to THAT post yet again), we wish that we could send rain their way, at least on days like this.  Instead, once again, I raced in the rain. (And hurt my back - how, for Pete's sake, do you hurt your BACK by walking????)

And now, in a masterful segue, I will devote the rest of this post to "B", my brother in law, who has autism.

"B" has never walked a Corporate Challenge.  He has never run one.  In fact, I can't remember the last time he ever exercised.

That has become a big problem, because "B" is in his 50's, and, as anyone who has reached that age can testify, things start happening to your body if you don't exercise.

Things happen that aren't good.  In the interest of preserving "B"'s privacy, I will not divulge those health issues "B" is experiencing except for one thing that I do need to share - "B" has asthma, and has had it for many years.

He fears physical activity.  The reason he gives us is his asthma - at least, that's the reason he gives us.  He will walk, maybe a round around the local mall, but that is it.  He fears an attack. In fact, the one time, many years ago, that my spouse took him for a walk, his mother was unhappy with us afterwards, and I know that "B" observed that.  So, it may be a type of learned helplessness.

When his mother had more mobility, she used to mall walk with friends, and he sometimes went with her if she needed a walking companion.  But, that's in the past.  My mother in law can't mall walk any more (she has problems walking, period) and so "B" is not moving.

So, we can't figure out what to do to motivate "B" to move more.   We live 150 miles away, so we are not in his life on a regular basis.  Many times, when we are down there, it is to help his Mom out, celebrate a holiday, or some other occasion where we aren't making time for exercise.  Unfortunately, the neighborhood where "B" and Mom lives has no sidewalks, and walking far is a dangerous thing. In fact, the entire community is not set up for walking.

There is a rail trail - we've used ourselves but it is not sunny, and slippery green stuff grows here and there on the trail.  He would rather walk in the mall, I suspect, which is more familiar to him.

So, what to do to get him moving more?

I hope someone reading this can comment with some suggestions.  Because, "B" has to move.  He has to, for the sake of his health, asthma in consideration, but I do know that people with asthma can exercise with proper precautions.

In the meantime, here is my post from 2009.

Just Racin' in the Rain.....

Just got back from the 2009 Corporate Challenge, an annual event in our area (and maybe nationwide). Employees of various businesses compete, in good fun, in various walking and running events. I'm not a runner, so I did the one walking event, the Predicted Mile. In this race, you race the clock, not others. Participants predict the time they will finish the mile in and the person closest to their prediction wins. The key here is that you can't have a watch or any other way of telling time on your person.

This is my third year of participating and it is a blast.

The first year it was held in August and it was in the 90's, with runners collapsing and ambulances responding. Not a pretty sight. Last year the weather was pretty decent. This year, the heavens opened.

It's been raining since last night with a few breaks. At noon, my walking partner and I did 1 1/2 miles, with rain at the end. Tonight the rain started about 5:30 and it didn't let up. The runners loved it. As for the walkers...well, my new walking shoes aren't so new anymore. But it sure beat being in the 90's.

This year's Corporate Challenge had the highest turnout in 10 years, and they had to split the walkers into two groups. 41 companies, large and small. It's a good event and I hope to participate in the coming years, too.

I'll know tomorrow if I (ha ha) won.

No Cats Were Harmed in the Posting of This Post

In Tuesday's blog post, I blogged about how my father in law died suddenly, in his sleep, on Christmas night, 1998. 

"B", my 50 something brother in law who has autism, blamed the family cat, Pepe Le Pew.

Pepe - who looked something like the cartoon cat many of us remember from our childhoods, if you are of a "certain age"- never really interacted with "B". Nor did "B" interact with Pepe, at least at anytime I ever remember seeing. My spouse doesn't remember any interactions, either.

In fact, while my spouse (who is several years older than "B") was growing up, he owned several cats.  "B" never showed any interest in those cats, either.  His mother and father did not keep other pets, so we'll never know if "B" would have made a dog his own, or a bird, or any other animal.

Is this usual for someone with autism?

The short answer is "there is an entire spectrum of differences between people with autism".  But one thing is for certain, in my experience:  the myth that a person with autism can not love, is just that - a myth.  (Something else to blog about, one day.)  They just find it difficult to show it in ways we without autism understand.

The longer answer is:  Some people with autism love animals and interact with them more easily than with people.

This could be for a number of reasons.  Animals do not judge our social behavior.  For a person with autism, the social behavior of other humans is a mystery, many times a painful mystery as he or she is rejected by others for reasons not easily understood.  The love of an animal is unconditional.

And, perhaps, the social behavior of a solitary cat or dog is something that a person with autism can pick up on.

The relationship between certain individuals and people with autism can be legendary, such as the famous professor of animal science who has autism, Temple Grandin.  Ms. Grandin, in fact, is an advocate for humane animal slaughter for those animals who are raised for food.  She even addresses the issue of humane animal slaughter in the context of two major world religions.

She writes extensively on animal welfare. 

And, those are not the writing of someone who does not care and can not love.

But, let us return to the situation, after my father in law died, where "B" blamed the family cat, Pepe.

We still don't know why "B" blamed Pepe.  I don't think we'll ever know. Perhaps this was his way of communicating something he saw that night.  An unusual behavior my spouse remembers from his childhood, watching "B" develop in a way unlike his other brother, was that "B" would blame his hand for misbehavior.  "The hand did it", he would insist.

Perhaps "B" saw Pepe trying to enter the bedroom the night my father in law died. (they probably had the door closed that night as we were there.)  Perhaps "B" (who loves to read about scientific topics) had read about folk beliefs that cats could smother young babies.  Perhaps he thought the cat had smothered his father. I can only speculate. 

It's important to note that whatever "B" was trying to communicate, he wasn't violent.  In fact, I have never, ever, seen "B" engage in violent behavior towards others.

He never tried to harm the cat.  And, I am touched by my readers who worried for the cat's fate. 

So, dear readers, let me assure you the cat in question lived to a ripe old age, unharmed (and probably unloved) by "B". Pepe died of natural causes when he was around 16 years old. In his older years, Pepe didn't stay at home much.  He took up with another neighborhood cat, and (with the owner's blessings) spent most of his indoor time with the other cat's owner.

I'm happy Pepe found happiness.  Sometimes, I wonder if "B" is happy with his present life.

And, one more thing to close this story.

My mother in law never replaced Pepe with another cat. To this day, they remain without a pet.

Spring Things- Urban Wildflowers

(Before I begin - for those worried about the cat in yesterday's post - no, he was not injured, and lived to an old age).  I will tell the rest of the story tomorrow.

You may be surprised to find wildflowers in an urban area but - wildflowers can be found in so many places.

Friday, I took a walk with a friend along the Chenango River in downtown Binghamton, New York. 

The Dame's rocket (Hesperis matronalis) this year is so beautiful that it is hard to remember that it is an invasive plant.  Strangely, while most people love the scent of this flower, I don't find it that pleasant. (I've blogged before about how I perceive certain scents, and my son is afflicted worse than I am.)

Virginia spiderwort (Tradescantia virginiana) was growing nearby.

Wild grapes, which have just finished blooming.

A couple of miles away, in Otsiningo Park, we find ragged robin (Lychnis flos-cuculi) in a wet area of the park.

And finally, from the week before this, lawn daisies in Skaneateles, New York, which is near Syracuse. I found these flowers everywhere.   Some do not find these welcome at all, as they will take over a lawn if you let them.

It seems like spring has just begun, but it is almost over.  Next week is my last Spring Things.  What do you think I should feature?

The Cat Did It - The Start of a Journey

"The cat killed him", my brother in law, "B", insisted.  We couldn't convince him otherwise.

"B", who, at the time, was a man in his early 40's, had lived almost of his life in the house in New York State.  At one time, his siblings lived with him but they eventually grew up, pursued careers, married, and left, not necessarily in that order.

"B" grew up but he never was able to pursue a career or marry.  He has a developmental disability called autism.  He has never had a lady friend.  He has always lived with his mother.

For years, he lived (and still does live) in his own room in a finished basement in the family home.

When his sister left home, she left behind a black and white cat, named Pépé le Pew.

Not "B"'s Family Cat-But Pepe Looked Similar

"B" never really liked the cat, I don't think, but he tolerated him.  He didn't take any care of the cat; that was left to his Mom and Dad.  Pepe was an outdoor cat, but he did come home to eat.

On Christmas Day 1998 my spouse, our then elementary school aged son and I visited my in laws, and "B".  We had a pleasant Christmas dinner and a quiet evening.  My father in law, after we all watched "It's a Wonderful Life", went to bed.

My father in law never woke up.  It was his third, and final, heart attack.

While we were all coping with the suddenness of this death, making funeral arrangements, trying to comfort my son (whose Christmas trip to Grandma and Grandpa had turned into a nightmare), "B" coped with the sudden death however he could. To be honest, between helping to plan the funeral, helping my mother in law, and being with my son, I didn't pay much attention to "B".

Until I noticed something strange, a day or two after the death. Somewhere along the line "B" decided that the cat had killed his father.

Our indoctrination into advocating for "B" was about to begin.

I will continue the story later this week.  Tomorrow, my Spring Things feature.

Kool Aid Irises

They are nearly done in my upstate New York garden. But these irises have a little bit of a history about them, and they may even have more of a history than I suspect.

Maybe.  But I really don't care.

Kool Aid Irises after a Rain

How I wish you could smell these flowers.  Since I can't bring you smell-o-blog, I can bring you the story of how I came to own these irises.

In the early 1990's I worked with a woman. Newly hired by our company, she quickly hit it off with all of her co workers, including me.

One day, she brought me some irises dug up from her garden.  "For you", she said. 

"These are Kool Aid irises", she told me.  "When they bloom they will have the most delicious fragrance. Some people liken it to grape kool-aid and others to grape soda.  And, on occasion, they have rebloomed for me."

I've grown them ever since.  They bloom in late May or early June.  Right now, we still have them but maybe for another day or so.

A post from a local garden blogger to the east of me got to thinking exactly what my Kool Aid irises were. Are they, perhaps, a heirloom, like her white irises are?

I wonder if they are Iris pallida. Their roots, along with roots of a couple of other irises, are used to produce "orris root" powder, an ingredient of potpourri.  (I haven't made potpourri in years, but it's never too late to start again.)

If they are Iris pallida, they are a bearded iris that originated in Croatia. And, even better, there is a variegated variety.   Although, one time, I tried growing a variegated iris, type unknown,and it didn't overwinter for me.

Heirloom or not, I love my Kool Aid irises.  They are hardy, reliable, and deer don't touch them. Although, at one time, we weren't concerned about deer in our urban garden, we've seen deer wandering a block or two away in the past few months.  The one thin they've never done for is rebloom, but that would only be a nice bonus from a lovely iris worth having.

My co worker moved out of the area years ago.  But I'd like her to know, wherever she is now, that her iris rhizome gifts are still blooming annually for us.

Do you know anything about this kind of iris?

Tomorrow - another post about autism.

Rolling on the Floor Not Laughing

I've realized that I've started to take you, my faithful blog readers, on a journey through an experience called "autism" but I haven't talked about one of the most important thing we must remember as we start our journey.

Dear readers, it is all about support and safety.

I asked my spouse when he first realized that his younger brother, "B", was not developing the same way as his next younger brother.

He was about eight years old, and "B" was three.

"B" was not talking. He would throw tantrums. 

Not only that, but he never crawled.

Instead of crawling, "B" rolled on the floor. Everyone remarked about it, but no one seemed to know the significance.

 Now, this would be an indicator that something was wrong, but not back then.

When my mother in law was sure that something just wasn't right, she encountered pediatricians who had not been trained in developmental issues.  This was the early 1960's.  So she knew something was wrong but just didn't know what to do about it.

Why didn't "B" talk at three?  Well, according to his doctor, it was his mother's fault.  She had spoiled him, letting "B" depend on his two older brothers to communicate on his behalf. Did she know there were other mothers and fathers out there in the same situation?  I'm not sure.

There was no therapy the schools could offer. In fact, his right to a free, appropriate public education was not yet guaranteed by law.

Basically, my mother in law made up whatever she did in raising "B" as she went along, as did other mothers of children with what we know today as autism.

Now, the torch is being passed to us, the siblings and spouses.  And, in many ways, we struggle. I thank you for coming along and promise I will be sharing some good information with you during June.

My mother in law, although she didn't know it then, was not alone in her journey, just like we aren't alone in ours.  For a minute, I want to blog about the mother of perhaps the most famous person with autism today, Temple Grandin.  Her mother, Eustacia Cutler, now travels the world, lecturing on various aspects of autism.

This is what Eustacia Cutler has to say, quoting from her foundation website:

"A strong family is the linchpin that keeps a spectrum person from slipping off course. Family care for that person can be a lifetime task—in early years for parents, in later years for siblings. It stands to reason, therefore, that support for all family members in the early years, will build a strong family able to cope with whatever comes—a more humane and less costly solution than 70 years of institutional support.

As yet no autism organization has given full focus to the disorienting impact of autism on all members of the family.

While some families have the strength of an extended family or community support group, and enough money to buffer the non-stop task, most do not."

Families bend, if not break, under the strain.  There is, according to Ms Cutler, hidden domestic abuse.  There is a debate over whether families with a child who has autism divorce at a higher rate than other families. Life can be hard. 

I guess I am still brooding over the incident I blogged about yesterday, where a young blogger caring for her older sister (parents dead) wrote one post and felt she needed to take the blog down, after some less than appropriate comments.

I wanted to thank everyone who commented on my post yesterday.  I will thank you all individually, too. You, my readers, are awesome.

And in the meantime, those who have family members, the sibs the in laws, the caring friends, need to have safe places to vent, to celebrate, to inform.  There are such places.  I will blog about them later this month.   And yes, we do laugh. We do have good days and good times.  But, overall, it can be so hard.  Thank YOU for your support!

I will continue this journey through autism on Tuesday.

Sustainable Saturday - To Those Who Hate

Who cares for the members of our society: the elderly, the frailest, or those who can not care for themselves due to physical or mental disability?

It's a job too big for one person.  That is where society is supposed to step in - the combined power of us all.  But too many times, it doesn't work.

Sustainable life isn't all about farmers markets, although I write about them a lot.

Depending on ourselves, or on family, or friends, is a nice philosophy until you have to put it into action. A person who embarks on caregiving without support will, sooner or later, be a person burning out.

If there is anyone in the world right now I would want to have write a guest post for my blog, it would be a woman who had started a blog about her particular situation.

The author was a young woman whose parents are dead, and so the responsibility for caring for her older sister rests on her.  Her sister had severe seizures as a young child, which caused major damage to her brain.  The sister, developmentally, is about the age of three.  She has other issues, too, as a result of this disability.

When the young woman sought respite and housing help from the State she lives in...well, it became an absolute nightmare.  She's not looking for a handout.  She is looking for some respite.  She has taken responsibility for her sister, as have others of us who have people with disabilities in our lives.

It's no surprise to me, and no surprise to anyone who is a sib or a sib-in-law of someone who is physically or developmentally disabled, that she must wade through incredible bureaucracy with rules that make absolutely no sense.  She must deal with agencies who have no idea of the needs of the people and family they are "serving". 

Just think of all the people without loving families who are adrift in that system.

But that isn't what I am blogging about today.  Rather, what I am blogging about is what happened to that young woman's blog.

She had many comments on her first post - which is going to be her last post, because she had to take the blog down.  Let's just say some of the comments were not friendly.

This was actually one of my concerns when I decided to spend part of the month blogging about my brother in law, who has a developmental disability called autism.

Yes, there are those who hate out there, and they just love to deposit their droppings of hate anywhere it is convenient.  They hide in the anonymity of the Internet.  Or, it could be that her blog was visited by people who hate those with disabilities.  To them I say:  being disabled is one minority group that anyone can enter into at any moment.  All it takes is, oh, a car accident.  Or a stroke.  Or cancer.  Or the bite of a tick.  Or being bitten by the wrong mosquito.  Or an injury that gets infected by the wrong bacteria.  And then they will be looking at life from the other side.

What you give, you get.  Life is an echo.

Karma can be a bitch.

I hope that young woman continues to write, somewhere, somehow.  She has a wonderful voice, and it deserves to be heard.

Still in Hiding

Imagine....being as young as two years old.  For reasons you don't understand, you are being separated from your parents.

You are sent to live with strangers.  Every so often, you are moved. Your name is changed.  You can't go out during the day.  Others can't know you're in the house. 

Sometimes you are treated well,  and sometimes, you are abused.

There is a war.  And you are part of it, but you don't understand why. Or, if you were old enough, you did understand, all too well, why people seemed to want you dead.  You knew that sometimes the families who hid you did it out of conviction, but other times, it was for the money that resistance groups somehow found, and paid to them.

Finally, the war is over.  Sometimes you are reunited with your parents.  Sometimes, you never see them again.  Sometimes, almost your entire family is gone forever.  Sometimes, you are forced to remain friendly with the very people who abused you.

And, however your saga of hiding ends, the war stays with you for the rest of your life.

The story of a number of Dutch children hidden from the Nazis in World War II is told in an amazing book about World War II called Hidden Like Anne Frank, that I happen to be reading now.  Each story is thought provoking, sobering and sad in its own way.

In this book, there are no happily ever afters.  There are, instead, many people, permanently damaged by war.  You stare into the faces of the children (each child has a photo), and the pictures of those same people, now elderly.  You think of your own life.  And you are grateful for what you have.

Possibly few of those stories would ever have been written if not for D-Day, June 6, 1944.  On that day, some 160,000 Allied soldiers stormed beaches on the coastline of France.  Although some 9,000 Allied soldiers were killed or wounded on that day, others began the march across Europe to liberate the people.  70 years ago today.

Now, the surviving soldiers of World War II are elderly, and dying, even though at least one man who parachuted in that day parachuted in again. In our country, they die at a rate of approximately one every two minutes.  Each day there are fewer left to tell the tale.  On June 4, Chester Nez passed away.  He was one of the original Navaho Code Talkers, and the last living one.  His battles were in the Pacific Theatre, not the European, but he and others helped make victory possible.

Yet, for almost 30 years, he wasn't allowed to talk about it.  He carried his scars inside, just as these children of hiding, grown up, did.

Today, we still have war.  We still have children damaged by various wars living all around our planet. We even have child soldiers going to war and fighting, some as young as eight years old.  We still have veterans returning from war, scarred for life outside (or inside), and hiding their pain.

One day we will read their memoirs, look into their faces, and we will ask "Why?"

Will we ever have an answer?

Tomorrow, my Sustainable Saturday feature.

But Will He Press the Button?

It was just a somewhat typical day, living three hours away from a mother in law in her 80's and her son with autism, my brother in law "B".

My spouse and I had last visited my mother in law and "B" over the Memorial Day weekend (the last weekend in May, here in the United States).

For several years, my mother in law has subscribed to one of those medical alarm devices that we used to poke fun of when we were younger.  Now that we are in our 60's and have an elderly relative we care for, it isn't so funny any more.

In fact, I don't know if I should laugh or cry at this parody of the old "I've fallen and I can't get up!" commercial.  Black comedy? or bad taste?

My mother in law has a device she wears on her wrist with a button she is supposed to press if she falls. Pressing the button calls a service that will summon help for her.  At one time they even kept a record of her medications, but, due to privacy concerns, they won't any longer.  The only problem is, she doesn't seem to wear it all the time - or, I suspect, even most of the time.  (Frustration).

On our last visit, we noticed a light flashing on the main alarm unit, which is near her kitchen telephone.  We talked to the alarm service.  The agent thought the button was dying, and said they would send a new device.

Except one never arrived. (This happened once before, incidentally, when they needed to send a new device. We had to call twice because the first one never arrived.). So my spouse called their service number. 

First try: recording said a 20 minute wait.  Called back a few minutes later.  Second try: recording said a 20 minute wait.

Spouse had another number. He called that and the recording didn't even identify the company - just said "Leave a message".  So much for try #3.

On try #4, spouse heard an option to leave a message and someone would call.  He did that and someone finally called.  The agent wanted to test the units remotely (she has two) to see if either one or both were no good. Spouse explained he was three hours from his mother.  So the agent said he would call her.  My spouse said "Wait, let me call my mother first." She does not answer the phone if the number is unknown. Spouse called, she answered and all (we hope) will work as promised.

Turns out the service had the wrong zip code on file. They are going to overnight something to my mother in law.  But, that isn't the end of our story.

One more question remains, one that I pray we never have to find out the answer to:

If my mother in law falls, and is conscious, she can press the button.  But if she is unconscious, will "B" press the button (or, in the alternative, call 911) for her?  He's been shown.  But it's not something we can figure out a test or routine for. It will be a one time thing.

My mother in law thinks he will call.  I only can hope she is right.  None of us know how we will react in an emergency until it happens.

Tomorrow and Saturday, I will be blogging on other topics.  But I will return to "B" next week.

Spring Things - Lilacs and Roses

Today would have been my mother's birthday.  She passed when I was 12, back in the mid 1960's.

One thing I associate with her is the memory of the scent of the talcum powder she used - something called Lilacs and Roses.

Here in upstate New York, our lilac season is ending (the three varieties at my house are long gone) and the rose season is barely beginning.  In fact, I haven't seen any roses blooming here yet, but I did find some, this past Saturday, an hour from here on the Cornell University campus in Ithaca, New York.

In honor of my mother's birthday, I'd like to share with you, some pictures of - what else - lilacs and roses.

This was the only lilac on my property when we purchased it over 25 years ago.  We share a hedge with a next door neighbor who, sadly, has dementia.  When he was himself, he used to let us pick lilacs from "his side" and I appreciated that so much.

This year, for some reason, it barely bloomed.

We planted this lilac some three or four years ago. It's doing well.  The only problem is, it was supposed to be yellow. It's a pale lavender but we really don't mind.  The name of the variety is lost to my memory.

We share this white lilac with our other neighbor.

Not my lilac - but I loved the color.

The scent of all these lilacs reminds me of my mother and her beloved talcum powder. But, strangely, as much as I love lilacs (and my spouse also), our son can't stand their fragrance.  To him, lilacs smell like garbage - literally.  There are some others who have the same issue.

As for roses - so many modern varieties have little or no scent.  But, at Cornell University, we found this rugosa rose just opening up - and it already had such a magical fragrance.

Scents can bring back such wonderful memories, can't they?

Happy birthday, Mom - wherever your spirit is.  I inherited my green thumb from you although there is a story behind that.  (Anyone want to read about it?)

What kind of memories does a particular scent bring back for you?

Another Change in Direction

We are feeling our way, lost in an unknown land, without a guide, as the guardianship process for my brother in law with autism crawls along.  We've never had a guide for anything pertaining to my brother in law, who was born long before the autism epidemic I touched on yesterday started.

Here I am, a blogger and writer.  Shouldn't I be writing that guide, that book, describing what we have done? What has worked, what hasn't? Our mistakes, so that others don't repeat them?  There are millions of people out there with children with autism, being born or in the process of growing up.  They will need a guide as they transition from raising a child to helping their child in adulthood.

If I don't write it, then who will?, I ask myself.

And then, I get second thoughts.

First, blogging is not book writing.  I enjoy blogging.  It uses an informal voice, it uses links to other blogs and websites, and you can insert other media.  In particular, I enjoy taking photos and posting them.  Others make videos.  I sometimes link to You Tube videos at times.

Books are more static.  It's a whole other thing, I am finding.

I'm finding I'm staying up at night thinking about the blog.  I don't like that.

Also, in thinking about our guardianship efforts, a lot of what we have experienced is specific to New York State, where both we and "B", my brother in law with autism, live.  Some of his other experiences are New York specific (such as something called "Medicaid Service Coordination".

And finally - I think I am rethinking just how much our experience will help others in the future, as social service and societal attitudes are changing so rapidly.  My guide may end up being a historical curiosity if I do it wrong.

 I hoped to use this month's posts as a springboard to (perhaps) writing that guidebook I wish I had in my library.  Now, I am rethinking the project  Perhaps not blogging that book, but gathering thoughts for further editing.  Right now I'm too thought scattered to make a success of this.

I will still do it, just on a smaller scale for now.

In the meantime, I have decided to cut back some (not all together) on the autism posts for this month.  I will still have my Spring Things (I hope you love what I have planned for tomorrow), my Sustainable Saturday.

This is not a failed experiment. In fact, I'm glad I tried it.  I'll just have to see how it progresses.  Worst case, I'll have content for my blog.  There's nothing wrong with that.

If you feel you will get value from more autism posts, please feel free to comment on what might help you.

And, see you tomorrow with some lovely spring photos from upstate New York.

Meet A Statistic

Statistics can be so impersonal.

You can read, for example "the rate of autism is one in 68 children in the United States".  Or, that, just two years ago, it was one in 88.  And before that, one in 100.  And before that....but I don't want to talk about autism statistics today.

What I want to talk about is one of the people in this country with autism - my brother in law.

The world my brother in law grew up in influenced a lot of his life, as it does for us all.  It also influenced the choices that were made for him - both in childhood and adulthood.  It shaped his personality and how he behaves now.  The world of the 1950's and 1960's was one so different than now.

Let me give you a little peek into my brother in law's history.

My brother in law was born in the 1950's, having two older siblings.  Both siblings developed normally. The older is my spouse.

In his infancy, my brother in law, who I will call "B" in these posts, became sick and ran a very high fever.  According to my mother in law, the fever was the dividing line between normal development and things that seemed more and more wrong, compared to how his two older siblings had developed.

The medical profession's answer to that was to offer her criticism and blame.

For example, he wasn't showing any signs of learning to talk and the doctor said it was because she was "spoiling" him.  "B" didn't speak until he was nearly five.

When it came time for his first communion and confirmation, the priest didn't want him to participate, at least not right away.

At some point in education, "B" was put into "special education" classes at what in New York State was called BOCES.  In those days before IDEA and also something called "Section 504" the right of the disabled to a free, appropriate public education did not exist the way it does now.

The BOCES placement did not work for my brother in law.  Every day he would come home, bullied yet again.

At some point, a caring teacher saw something in "B", and he ended up back in "regular" education, graduating high school.  Remember there were no support groups, no Internet, and not even a name for what my brother in law was experiencing.   Until one of her friends talked my mother in law into taking my brother in law to a special place where they would study him, and there would finally be a name, an explanation.

He was 19.  And, the name was autism.

After a short lived try at college (again, without any supports), it was found that my brother in law had some ability to work with his hands, and "B" ended up at an organization called The ARC.  Back then it was called the Association for Retarded Children.   This is a name that would never be tolerated today in the United States.  But, for my brother in law, this became a haven.  The ARC has a long, distinguished history.  His local ARC was founded, in 1974, by parents who craved better for their disabled children.  This year, it celebrates its 50th anniversary.

Here's some more about my brother in law.

My brother in law craves routine, as do all with autism.  His senses are super sensitive. Thunderstorms frighten him.   He had frequent temper tantrums as a young child until he finally learned to talk.  Even today, his ability to carry a conversation is limited, and most conversation is confined to a few specific topics (the weather, a baseball team he loves). 

"B" is not easy to know. He speaks in a flat voice, not making eye contact. He has an ability to remember dates and the weather on each day of his life, but do not think of him as "Rain Man". Every individual "on the spectrum" as the autism spectrum is called, has different strengths and weaknesses.

But, it is clear that he needs help with a lot in life, including advocating for his own future.

Tomorrow - more about the guardianship process my spouse is undergoing.

A Fortieth Wedding Anniversary and Continuing an Autism Journey

Autism has been in my life for almost forty-four years. It entered my life almost to the day I started to date my spouse.  It entered quietly in the form of his younger brother. 

Today, we are celebrating our fortieth wedding anniversary.   We have been through our share of good times and bad times in these forty years.  We hope we will travel through life together for years to come.  Meanwhile, this younger brother of my spouse's is still in our lives, and still part of our journey.  He's a huge responsibility and my spouse's responsibility will soon be growing even more.

As regular readers of this blog know, my brother in law, in his 50's, is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For almost a year, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   My in laws never did much to plan for the future of "B".

 It's sad but true. But, considering the times my brother in law was born (the 1950's) not unexpected.

For his entire life, "B" has lived with his mother in New York State.  My father in law passed away over 15 years ago. Since then, it's been just the two of them in a house that once was the home to an entire family.  "B"'s siblings grew up and left.  B grew up and is still there.  He has lived in the same house for almost his entire life.  He has his own room, and his own bathroom.

People with autism do not cope well with change.

Some major changes are coming to "B"'s life.  .We know he is aware of that on some level, but his thoughts are unknown to us.  Autism makes it so difficult for him to communicate with us. We suspect he has a rich inner life, but it will be forever locked away from those of us who love him.

My mother in law, like all of us, is mortal. One day she will no longer be with us.  We had a scare late last year when she was diagnosed with cancer, but she is currently in remission.

But, it's just a matter of time before she may not be able to live independently.  She's fallen several times in recent years, and fell again just before Mother's Day.  Her cancer treatment sapped a lot of her energy.   Thankfully, her mind is intact.  We live some 150 miles from her, which makes us long distance caregivers.  We are part of a large club of baby boomers, but our responsibilities are a little different.  How many of them have sibs or sib-in-laws with physical, mental or developmental disabilities is unknown to us.  That statistic must be out there somewhere.

If my mother in law dies before my spouse gains guardianship, the state of New York will take control of his future, and he will have no choice in the matter.  We don't want that to happen.

Advocating for "B" and trying to help plan his future (something that is difficult for "B" to do on his own) is part of the package of our marriage.    And part of sharing our lives has been "B" entering my life.  I've known him for over 40 years.

This month, I am participating in the 2014 FLX/WordCount Blogathon.  This is my fourth Blogathon, and some of you may have noticed that this isn't my normal Civil War Sunday post.  Indeed, I've decided to devote part of June to blogging more about my brother in law and the impact he has had on my life.  I'll blog more about that decision later this week.  I do not intend to turn this into an "autism" blog, but I do want to share more of this portion of my life with you.

I will still have my Spring Things feature on Wednesday - look forward to showing you some great flower photos taken in my home area of upstate New York.  I'll probably also continue my Sustainable Saturday feature. I hope you'll join me as I temporarily change the focus of my blog.

Please, join me as I begin my 41st year of marriage, and as I continue my journey through autism.

Has autism entered your life in some way?

Sustainable Saturday - Urban Eggs?

This, with some edits, was first posted August 24, 2010. I am preparing for a month long blog challenge, during which I am going to explore the possibility of trying to blog a book, or, at least, part of a book - a book about having a brother in law with a developmental disability called autism.

I may (or may not) keep my Sustainable Saturday feature for the entire month - and I will not have a Civil War Sunday post this Sunday, or possibly for the rest of the month.

Today-urban eggs.  Tomorrow - please join me for my blogging experiment.  I might even throw in a chicken or two.

Urban Eggs....

No, these ladies aren't urban - and we don't have snow on the ground.

Grow your own eggs in the city!  No, you aren't going to plant them in your garden.  Rather, you will have to keep chickens. (Or ducks - but that's a story for another time).

Urban chicken farming?  What?  Who, me? Well, it is a time honored tradition.  You would be surprised to know which cities allow its citizens to keep chickens. 

Isn't it illegal?  Well, that depends on where you live.  Near to where I live, the city of Binghamton, New York does permit the keeping of chickens.   If it is illegal, don't try it at home. But do consider lobbying for having the law changed. Various communities have changed their laws in recent years.  Be sure to do your research so you don't learn "the hard way" that you can't.

Again, this isn't a political blog so I will keep to my area of expertise - I do love chickens, and I used to keep them. But be aware:  it is work!  (but maybe no more than owning a couple of dogs.)

We haven't tried urban chicken farming.  Yet. I'm not even sure my town (the town of Union) allows it.

I'm not going to give you a lot of advice, having only raised and kept chickens in rural settings.  Instead, if you are lucky and your local laws allow, here are some tips from my store of experience:

1. Stick to the ladies.  You probably will have to, anyway, as urban laws generally ban roosters (for very good reasons).  But chickens will lay eggs quite happily without a rooster.  I doubt they miss the males anyway.  You won't miss roosters either.  They can be very aggressive and they have spurs on their legs. (Ouch!) They don't crow once at dawn and shut up for the day, like I thought while I was growing up in New York City.  Oh no.  It's more like every few minutes and they only stop at night.  They will wear your ladies out. Again, stick to the ladies unless you want to eat chicken, also.

2.  Socialize your ladies.  If you get the chicks young, spend time with them.  Handle them.  They do make good pets, if you don't mind pets who can dig up your garden in seconds flat.  Fence well.  They can fly, especially the smaller breeds and your neighbors won't want chickens in their flowers any more than they want your cats in their flowers. 

3. Get the right breed for your needs.  Decide if you want the chickens for both meat and eggs or just meat, or just eggs.  If you want meat well...is there a place or person who will do the deed or will you have to?  Are you up to it?  It's not pretty.  But some will say you should do this from beginning to end.  Be sure to choose a breed with a name.  Some "all purpose" breeds will give both good meat and nice, brown eggs.

You won't be able to do the mail order of my Thursday post, as you have to get 25 at a time (to keep each other warm).  If you are lucky you have access to a farm store.  Otherwise, you will have to find some friends and split an order.  

4.  But if you do eat your chickens be aware these are not your supermarket chickens.  They will have lots of flavor-and lots of toughness.  There are some very nice recipes out there for "free range" chickens and there is a reason for those recipes. They make wonderful soup, by the way.  Wonderful, golden, tasty true chicken soup. They say it is great for colds.  My son sure swears by chicken soup for colds.

5.  But back to eggs....one thing you also need to be aware of is that egg production is photo sensitive.  In other words, if you want eggs in the winter you are (unless you live in a place like Florida) going to have to put lights on them to artifically extend their day.  If you don't, you aren't going to get many eggs.  Be sure you make provision for that.

Feed?   If you don't have a local farm store you can mail order the food.  They will need a mix of grains, or layer pellets if you want to simplify their feeding.  Great supplements include weeds from your garden and bugs from your garden.  (Squeamish alert) we used to feed our chickens grasshoppers and weeds.  They love both.

6.  Finally, chickens....well, um, that food you feed them comes out the other end.  Don't use it on your garden without aging it, and make sure your neighbors are OK with it.  Otherwise, dispose of in an "organic" manner.  I guarantee it if you offer the used bedding for free you will have some very eager gardeners ready to haul it away for you.  (maybe you could sell them some eggs, too.....)  Be considerate of your neighbors, always.  If you tick them off you aren't going to be successful - period.

Good luck! Take my advice for what it is worth-I hope it is worth something to you.  Maybe one day we will take the urban plunge-although I don't think so. We want to travel too much!

Have you ever kept urban chickens?