Things Fall Apart

“There is no story that is not true.”
― Chinua AchebeThings Fall Apart
Lagoon Nebula
Whenever I am feeling as if the goal I have worked towards is becoming further out of reach through no fault of mine, but because the “system” itself is to blame, the title of this famous novel, Things Fall Apart, always pops into my consciousness, stopping my mind from endless fretting over all the tiny problems I am encountering.
“Things fall apart”, the refrain always in the background as I go about my day trying not to scream at someone on the phone, remaining calm in the face of near catastrophe, scheduling a meeting to deal with problems, emailing and texting and venting with friends and family.
Things fall part: The system is poorly designed.
Things fall apart: People are inherently fallible.
Things fall apart: No one really cares enough to make it work.
Things fall apart: Because it is too difficult to maintain.
Things fall apart: You are too idealistic.
Things fall part: You are too rigid.
Things fall apart: Because you haven’t communicated well enough.
There is no harmony, no pulling together, no common goal.
For the past two years, I have been working towards making a better life for my daughter and other adults with autism.
With the help of another like-minded parent, a plan was developed for a quality residence and day program that would give her the opportunity to have a meaningful fulfilling happy life.
Last June, Lily moved into the residence and in many ways it worked much better than her previous house. She settled in and was happier almost immediately.
Then it became clear that the management was not working out and there was an almost complete change in staff after the first six months. The old symptoms of anxiety began to slowly worsen. Housemates also had problems. Supervisory staff was not responding in a very constructive manner.
Things were falling apart.
After much discussion, plans are in place to start over, to recruit better staff with better
supervision and support.
I am dealing with my feelings of disappointment and anger by scheduling meetings and talking about the original goals. We will try to discover new ways to improve the “system”, to work on the  old school mind-set, to revolutionize the way our children and loved ones are living.
 ” Things fall apart; the centre cannot hold;”
-William Butler Yeats, The Second Coming
 
gyre
Things fall apart, because the world changes, society changes, needs change as we change.
Change happens.
Life is change.
“You can’t make an omelet without breaking eggs.”
broken.eggs_.earth_.shutter
I just have to keep thinking that things fall apart
shocking-video-of-how-colored-chicks-are-made-in-india
in order for something better to come through.
This is true for the world at large and how I cope with the horrors of the daily news, just as it is true for all the other barriers and obstacles in my every day life.

Autism Awareness Month: No Time for Old Ideas

“Que sera sera, whatever will be will be, the future’s not ours to see, Que sera sera…”

When I was just a little girl
I asked my mother, what will I be
Will I be pretty, will I be rich
Here’s what she said to me.

Que Sera, Sera,
Whatever will be, will be
The future’s not ours, to see
Que Sera, Sera
What will be, will be.

On NPR yesterday, Terry Gross on Fresh Air was interviewing Doris Day about this song, saying that she, Terry, had always disliked the song and that she had heard that Doris had hated it also.

My mother used to sing this song to me when I was a small child, around the same time that it was a hit song, in the 1950’s. I loved having my mother sing to me and never thought about the lyrics until I was a teenager and became more socially aware. Then, in the activist 1960’s, “what will be will be” just did not cut it with me.

When my own daughter was small I sang to her, too. The songs that my mother sang came into my head almost automatically. When we received the autism diagnosis, I revisited this song as a way of accepting things as they were, of letting go of my dreams of the perfect little girl and the perfect little life.

Gradually I rejected this song again, in favor of “You are my sunshine”  and other more uplifting tunes. (Lily sometimes puts her finger over my mouth to get me to stop singing; my voice is not the best.)

We are now being told that 1 in 88 children will be diagnosed with an Autism Spectrum Disorder by the age of 8.

That is 1 in 54 boys.

That is 1 in 252 girls.

“What will be will be” cannot be our theme song.  What should our song be?

Examining Life: Adults with Autism, Part 7-Friends and Family

Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.

Friends and Family

Lily with friends

I am trying to find families for a new and exciting home for my daughter. We are planning a home and day program that will meet the specific needs of each individual and lead to a happy life in the community.

Finding compatible parents is the first step because we all will need to be actively involved for this to work. We want to be part of her life and know and like the families of her housemates.

Finding collaborators to provide the services who share the goals and that we feel we can work with is also paramount. We have successfully brought together two groups who are committed to the same goals that we share and an academic center devoted to improving life for adults with autism.

Because there are not many females with autism compared to males, finding compatible house mates has been more difficult.  We are planning a mixed male/female house. I am not sure how much it matters to Lily who she lives with because she really bonds with her staff more than with her peers. Maybe if she lived with a young woman who was verbal and they shared the same preferences for activities in the community, perhaps she might make a relationship with a peer.

So far Lily’s female peers have been either not interesting to her or a painful annoyance. One of her current housemates screams high-pitched loud protests when she is anxious, (which is frequently), and Lily does not tolerate that well. In past situations, Lily’s aggressive behavior has disappeared when an offending noise-making female was moved to another house.

This is one of the many reasons we are making our own program; the current Agency refused to listen when we asked them not to put this loud woman in the house with Lily because Lily had already had problems with her at the Day Program. When they refused to change their plans, we asked that Lily and the woman not be in the same group at the Day Program; so far this has not been achieved.

Lily does have friends who are family friends and  she can be very social with people that she knows accept her as she is and do not expect her to be like everyone else. Staff who care about her will see the side of her that we see, the caring loving side, not the monster side.

My hope is that when Lily is comfortable in a place with staff who care for her, accept her and meet her needs,  she will blossom again and we will have the daughter back that disappeared when she turned 22 and left her school for the big bad adult world.

In the meantime, when she is at home with family and friends who love her and respect her she is generally happy and less anxious. Thank you, family and friends, for being there for her and for us.

Choosing the Wine with Uncle John

Cousin Edie, Lily, Aunt Sharon

Lily Dancing with Uncle Harvey

Examining Life: Adults with Autism-Spirituality

This post is the sixth in a series in response to the question of what I think would make a life happy and fulfilling for my autistic daughter, Lily.

Lighting the candles

I have often envied people who have a strong connection to one of the organized religions; the emotional support gained by being part of a community of like-minded, caring people as well as the guidelines for directing one’s life path, the moral guidance, the comfort of a GOD to pray to, the comfort of being in the right.

In this instance though I am sad for my friends whose autistic children are not accepted in their church or synagogue because of behavior issues or embarrassment. They cannot share that important aspect of their lives with their child. The security they gained from being part of a larger community disappears. They might even lose their cherished faith in a god who could make their child suffer in this way.

Spirituality is an important part of our lives as humans whatever form it takes. I am most comfortable communing with nature instead of inside a building with everyone dressed in their best clothes, on their best behavior. I am lucky that I can share this with my daughter and that she seems to really “get it” that we are all the same and at one with nature.

She even partakes in sampling many of nature’s gifts in their most natural state such as leaves, flowers, rose hips, seaweed, and pine needles. She drinks the elixir of the gods, seawater, whenever she finds the opportunity. She carries rocks as her totems, often preferring the textures to her stuffed animal friends; they, too, can be licked!

When I first began my middle-aged search for what had gone missing in my life, I remembered how as a youth I had attended church with my friends of all religions and denominations. I sang in the choir, attended Sunday school and summer bible camps. At college I took comparative religion courses and looked at the fads of the times, like Transcendental Meditation and yoga, without finding any one way that suited my inner life.

I finally concluded that my rumored family history of Native American blood lines must be influencing my spiritual life, as I feel that all things, including the rocks and the water and the earth, are related; as they are in a physical sense, so too in a spiritual sense.

Lily understands this as well; it is not something she needs to be taught or that needs to be explained. Perhaps the whole notion would seem primitive, and therefore beneath them, to those who base their lives on reading a book that other people wrote many, many years ago. The indigenous people of the earth have a connection with how things really are that layers of writings by the powers-that-be-in-the-land will never get even close to.

What do we know, actually, about the universe? What are we doing here on this earth? Is it going to be: “So long and thanks for all the fish?”