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 and Medicaid: No Room for Debate

 

Did anyone watch the Obama/Romney debate last night? None of my close friends did, probably because they already are among the “decided”.  See the complete video and read the transcript Here.

If you watched, and if you are as obsessed with autism as I am, then you immediately noticed the President’s reference to Medicaid and families with autism.

As I indicated before, when you talk about shifting Medicaid to states, we’re talking about potentially a — a 30 — a 30 percent cut in Medicaid over time. Now, you know, that may not seem like a big deal when it just is — you know, numbers on a sheet of paper, but if we’re talking about a family who’s got an autistic kid and is depending on that Medicaid, that’s a big problem. And governors are creative. There’s no doubt about it. But they’re not creative enough to make up for 30 percent of revenue on something like Medicaid. What ends up happening is some people end up not getting help.

If you are anything like me, you probably did not know that the majority of expenses for the long-term care of the disabled comes from Medicaid.

You probably thought Medicaid was just health insurance for the poor.

Perhaps you thought wealthy states, such as Massachusetts, paid for the care of disabled citizens because of high moral values and a commitment to caring for the most unfortunate of unfortunates.

Medicaid, (Mass Health in Massachusetts), pays for health care for the poor and treatment of autism for children certainly comes under that heading.

For my adult autistic daughter, over 60% of the cost of her day program is funded by Medicaid.  Her home is paid for by a combination of Medicaid and her SSI (Supplemental Security Income) check.

Decades ago now, the Medicaid Waiver was instituted to encourage the movement of disabled individuals out of institutions and nursing homes into more inclusive residential settings in the community.  This allows for my daughter and others like her to live in group homes instead of outmoded and often cruel state hospitals.

Preparing to go to a new home.

In other states, movement away from institutionalization has been slow. This story here from the NY Times narrates the transition for one man in Georgia. In Massachusetts where we live  a few families have resisted moving their children and they remain in the institution where they have lived most of their lives, at great expense to the commonwealth.

Even in Massachusetts there are yearly budget battles where well-meaning legislators and the governor try to parse out dwindling funds in the most humane way possible. Direct care staff did not receive pay increases over many years and family support services to those individuals who stay in their homes are continually under attack.

Imagine a scenario where each state is entirely allowed to decide what to do with all of the money.  As it is, the dollars do not go far enough and states move money around creatively to fill their own needs. Who do you think is usually on the bottom of the pile, mostly unable to speak for themselves?

Would some states choose to fund only home care? How many more hurdles would they put in place for desperate families to stumble over? Would some leave the majority of the financial burden to “faith-based” charitable organizations?

I have never understood why in some people’s minds it is ok to let some Americans be more equal than others. Why shouldn’t the intellectually disabled adults in Georgia or Maine have the same opportunities as they would in Massachusetts? Why have a United States if you don’t want to share?

 

Happy Independence Day: Let’s all revolt for Liberty and Justice for All

The declaration of independence inserts itself into all things today, so why not bring it up again here (for a transcript).

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

I believe these rights to refer to ALL people, inclusive of race, religion, gender, abilities or dis-abilities.

The first part, that often gets left out when people try to quote from their grade-school memory banks,  contains one of my favorite phrases:

When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature’s God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

“Laws of Nature and of Nature’s God”.

Note that this does not say “Christian” god, or “Jesus”, or refer in any way to the bible, new or old testament.  Although the “Founders” of our nation came from a christian tradition, their writings did not refer to christianity above all other religions.

The “laws of nature”: sounds a bit like science to me.

“Nature’s God”: could be any god at all, including pagan.

Our forefathers came to these shores to remove themselves from a society that was rigid and stultified. They were often persecuted and their lives were in danger because of their beliefs or lack of beliefs. Like the immigrants that came later, they were fleeing to a new land of Freedom and Liberty.

There were some initial attempts at recreating England here in the colonies. Religious liberty was curtailed in Boston forcing free thinkers like Roger Williams to move on to Rhode Island to start again. By the time of the Revolution, thirteen colonies existed with separate laws and currencies, and, separate religious affiliations, and yet, a common goal: to be free of the old ways and move on.

So I say: “Revolt!” Leave the old ways, the old thinking, and move forward. The time for revolution is now!  Join  your compatriots in making a place for everyone in this new century. The old laws that discriminate against race and gender, that prohibit, that protect hate, that keep society divided, that breed fear and distrust; those old ways of living and thinking are behind us and we will move forward into century that aspires to fairness  and freedom for all of our members.

By the way, in case you are thinking I belong with the idealists and dreamers, those who romanticize “revolution” in all it’s forms.  I am fully aware that no revolutions have solved all the problems that they were meant to, even ours.

I leave soon for Russia, to visit the place where my husband has worked for twenty plus years (while I have been caring for our lovely Lily). Certainly the Russian people’s attempt at change via revolution has not been as successful as they had planned, nor has their re-entry into global capitalism been smooth.

Americans forget that we revolted at a time when Europe was in turmoil and the age of enlightenment encouraged many philosophers and intellectuals to reconsider how nations could be organized to better allow the rights of all peoples. Even Catherine the Great, Empress of all the Russias at the time, was a devotee of these new ideas. She could not find a way to bring her country out of slavery and serfdom in her life time and it took a violent and bloody revolution, like that of France and over a hundred years later, to finally free the serfs.

So I am not advocating bloody revolution and Molotov cocktails,

(gin and tonics more likely).

But people, think about it. What is wrong with letting people live their own lives in peace?

So here’s to a peaceful revolution in our time…

We will search for a new way to move forward towards a more just world here in the great USA.

Calling All Revolutionaries: Families for Freedom

It has been difficult to find families who want to work on a new revolutionary way to provide a full life for their adult children with autism, perhaps because we have been looking for adults that are just beginning the transition process. The children are still in school and the parents are satisfied with what they are doing and receiving for services; having worked to get it right, they are making progress and perhaps even seeing the positive changes that can come with maturity and stability.

The nightmare experience of seeing all that progress disappear into the maw that is adult services has not yet occurred.

Last week I attended an invigorating “brainstorming” session about planning the future of the autism programming for the new agency that I am working with for Lily’s new life.  I was amazed to be invited and even more astounded that “Families” was the first on everyone’s list of values. So often in my three and a half-year experience with the adult system the parents are ignored or “yessed” in meetings. The attitude is one of “us” and “them”. How refreshing and encouraging to meet this very sincere group that I hope soon to be an even more active member of.

Today, looking out over the shining blue of the bay with the puffy clouds and the dappled sand, I wonder whether the first English, French and Viking settlers to these shores thought about the physical beauty surrounding them as they pulled in their nets and laid out the fish to dry in the sun.

Were they too busy working to survive to be awestruck by the colors of the sunrise after so many days of rain and fog?

Did the wildflowers blowing in the breeze ease the ache of their backs as they gathered wood for the winter and plowed and seeded the garden?

Here in the Northeastern United States, with long, cold winters of bleak landscape and hungry wildlife, we treasure the few short weeks of spring and summer, hoarding days spent fishing, gardening, hiking and sailing, or perhaps simply sitting on a rock, gazing out at the beauty.

We know what man has done to nature as well; we have the contrast of the cities and industrial pollution versus the sea, woods and farms and appreciate all the more what we still have seeing it next to the examples of destruction.

The First People, or Native Americans or Indians or whatever you wish to call them in your culture, appreciated the sustaining value of the natural world around them and protecting it has prominence in their religions and way of life. They knew this truth without need to compare with the absence of nature; it puzzles me sometimes why we seem to need to miss something after it is already gone.

Missing our school experience that treated our daughter as a whole person, and having the experience of seeing her regress under a program that sees her as flawed and broken, to be managed like unwanted refuse, we have become acutely aware of the destruction around us and wish to reclaim and rebuild her world to more closely resemble what we had before.

We will build a new world based on the rights that Americans hold to be self-evident, a revolutionary new world, dedicated to the rights of ALL people to happiness and freedom.

Perhaps we need to look for our families amongst those who have seen the future, instead of those who are have not yet experienced the destruction.

Belated Mother’s Day Card to Myself: Honor Military Moms

After reading all sorts of blog posts about Mother’s Day and mothers who are saints and over achievers, I’ve been wanting to share why I enjoy spending MY Mother’s Day without my family.

As most mothers of special needs children will tell you, being with a daughter like Lily can be exhausting.

Trotts and Lipmans in Belfast

My Princess was home the previous weekend so that she could visit with her much beloved Aunt Sharon and Uncle John who were visiting from California. Dad picked Lily up at her house and they drove to Maine where we all had a lovely time eating lobsters and walking the beach, watering the garden and taking walks in the woods and in town.

She also went for rides with Dad in the Jaguar and took the recycling to the transfer station.

All this was very exciting for our Princess who also managed to drink soap, pour liquid soap down the toilet (because she did not like the smell), drink seawater and eat seaweed.

On the Monday when I was going to drive with Lily back to Massachusetts, her anxiety level had doubled and whether or not it was  because she knew she had to leave the family party or because of seaweed aftermath (I can never tell) she became “unstable”.

Taking her back to her house has become a nightmare because she starts in with the pleading looks about five miles from the house. Then she starts belching and regurgitating, working herself into a full-blown panic attack. When she arrives at the house, she races upstairs to her bathroom, rips off her clothes and showers until she is calm or until the hot water runs out.

So going to get her is great and she is ecstatic; taking her back is overwhelmingly upsetting.

My Mother’s Day alone allowed me to reflect on how much I love her and how much I need to rest after being with her. We avoid the difficult transition anxiety completely. We see each other later in the week on Skype; she is smiling and happy with her favorite trusted care-giver.

And no offense to my Mom but I do not remember feeling the need to be with her on that specific day. Visiting Mom was a weekly event for us if possible and would have been more often if we lived in the same town. Why do people think that some flowers and a brunch are adequate recompense for all the years of worry and sleepless nights?

Mother’s Day was originally to support mothers of soldiers sent off to war, wasn’t it? We should support the military mothers,  especially those mothers of special needs children who are not granted full medical coverage for their children’s problems.  Apparently, Tri-care does not adequately cover autism treatment, especially after retirement.  (See petition HERE to urge Congress to make autism treatment available to all military children.)

So keep your baubles and flowers  for next Mother’s Day, too. Give the money to the autism charity of your choice. I will hopefully enjoy another peaceful day in my garden, resting up for another whirlwind day with Lil the next weekend.

And support the Caring for Military Kids with Autism Act  http://cmkaa.org/cmkaa-press/

Happiness is…

If happiness is the key to life, and that is what we all want from life, how do we design a support system for adults with severe autism that encourages happiness?

First we have to find out what makes an individual person happy.

To do that, the person must have a means of communicating to others what makes them happy.

That is the first goal, to encourage and respect the communication of those that we care for.

Behavior is communication. We must try to see past the unpleasant behavior to what is being communicated by the behavior. Medications mask the behavior and silence communication; that is disrespectful of the attempts of the person to communicate their needs and opinions.

If an adult with severe autism has no reliable means of communication we must help them find ways that work for them or we are not doing our jobs.

Happiness is  an  “unalienable right” according to the US Declaration of Independence. I think it is time that this right is applied to those of our citizens with intellectual and developmental disabilities.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

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?”

Creativity:Planning for a Happy and Fulfilling Life

This is an attempt to think out loud about what would enhance my daughter’s life in the area of creativity. Here is a photo of her at school a few years ago, rolling her eyes while being asked to make Christmas decorations out of recycling materials.

(The shortened bangs are the result of the birthday cake incident that I spoke of in a previous post.)

When we are children our lives are filled with manufactured opportunities for creativity; the day-care or preschool activities include finger painting, watercolor painting, painting rocks, play dough, clay, making collages out of pasta shapes, nature collages, paper mache, plaster casts, block printmaking, music, drumming, recorder, symbols, singing, listening, dancing, stories, making up stories, acting out plays, pretend play with toys or with other children and adults; the list can be endless if the adults are imaginative and value instilling creativity in their young children.

Of course, it could just be that there are not enough quality care givers in day care and schools or that the parents are over worked and over stressed and the TV becomes the babysitter and creativity takes a back seat.

For Lily as a child all the messy arts were extremely problematic as she could never get the idea that you were not meant to eat the play dough or paint your mouth. This has not significantly changed in that often she cannot overcome her impulse to put everything in her mouth and if it has a lovely color or texture even better! At school they were able to gradually introduce the idea that she could roll out snakes of clay without eating it and paint on some glaze without sucking on the brush.

Smelling the candle

(If I could show you the other kids in her class you would see that they are all contemplating eating the candle.)

The school Lily attended valued music and art highly. Many lessons were devoted to using crayons and paints to color and copy pictures over and over again. Lily hated to color and I was never sure if she kept eating crayons because she enjoyed it or because she wanted to get out of doing the activity. She never learned to play the violin but she did learn the keyboard harmonica. She really detested practicing and would only demonstrate her proficiency under ideal circumstances.

The only art project Lily ever seemed to enjoy was the one where you make strips and shapes of color by ripping up magazine pages then glue it on the paper in various ways. It might be abstract or maybe “painting “in the shapes of the picture with paper instead of marker or crayon. The result was always beautiful to my eyes and she liked to do it! She also would take pieces of words to build sentences, but that required a lot more encouragement on my part and she felt more pressure to perform in a way that she wasn’t sure that she could.

What she really loves is listening to music and dancing. She loves all kinds of music including “Classical” music and symphonies, Afro-pop, The Beatles, Hip Hop/R&B and Mom and Dad’s old rock and roll. She dances with a side to side swaying motion, holding on to her partner with both arms, often from around your back with her hands locked on your arms.

Even though Lily has no speech and cannot write, she nevertheless enjoys hearing stories and poetry read aloud. She has little attention span for boring wordy plays or TV shows, but if it has music she will watch with glee. Disney always pleases and The Little Mermaid is a favorite.

One thing that distinguishes severe autism from other intellectual disabilities is that the children have no pretend play. They do not make up scenarios with their dolls or cars or feed their stuffed animals. They spin the wheels on the trucks instead of race around the floor with them. There is very little back and forth play and this makes it very challenging for the teacher or care giver to play creatively with them and hold their attention.

To imagine a creative life for Lily as an adult, I have to think of what Lily actually likes to do, what I think Lily is currently cognitively able to do, what might be Lily’s cognitive capacity in the future, and what her care givers would be able and motivated to help her achieve.

From the above list, the only thing that stands out is music and dance.    We must somehow convince her direct care staff that it would be more fun for everyone if they turned on the lights in the living room, put on some music, and let it all hang out!

As for expanding the list of possibilities for Lily in the future, stay tuned!