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?

 

Restoring a River with Community Partnerships: A template for change

Last month I had the pleasure of attending the symbolic ceremony marking the Penobscot River Restoration Project, the destruction and removal of the Great Works Dam in Old Town, Maine. Now this dam has been breached and those of you who enjoy watching large machines destroy things can watch here.

I grew up near the Penobscot River and back then, in the 1950’s and 60’s, rivers in Maine were barely alive. The Penobscot never froze over in those winter days and did not support fish life. The salmon and sturgeon, the alewives and striped bass, declined almost to the point of extinction.

Over a decade ago, conservation groups, the Penobscot Indian Nation, communities and governments came together and participated in a collaborative effort to restore the health of this river.  The water quality had already improved, thanks to clean water laws initially proposed and enacted by legislation begun in the 60’s by the state legislature, including my mother, who was a representative from Orono, Maine.

Now, the goals of these collaborating groups are being realized in the form of actual removal of dams and the building of modern fish diverters and elevators around the dams that will remain. Over one thousand miles of water will be reclaimed by nature; hopefully, returning salmon and alewives will find it a healthy home to spawn and reproduce.

Restoring the health of the river will contribute in many ways to restoring the health of those who live work and play on it, including the Native people, those who fish in the river, in saltwater bays and in the Gulf of Maine, and visitors from away. More fish contributes to more fish, therefore more fishing.  Sometimes things are just that simple.

I cannot help but see this as a metaphor for life today and for my efforts to build  a new life for my daughter and her peers. We must persevere in the face of entrenched and antiquated ideas about what is possible, collaborating with others even when the groups seem to have opposing priorities. Old and crumbling obstacles must be removed and the natural way restored so that our children, our most fragile and vulnerable resource, be allowed to flourish in a dangerously damaged environment.

Listening to the speeches by the dignitaries at the ceremony, I heard many words matching the phrases I heard at the planning day for autism programs at the agency I have been working with:

  • Partnership
  • Quality of Life
  • Positive Change
  • Innovative
  • Community Collaboration
  • Leadership

As disability advocates, we have much to learn from this example in the conservation community.

My mother would be proud that people working together could achieve so much for this Penobscot River, for Maine and for the health of the environment.  I hope that other groups of people can collaborate to achieve their individual goals in a similar manner.

I plan to keep this milestone achievement in my mind as inspiration as I work to move my “Restoration” project forward in the next years: my “Peaceful Revolution”.

 

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/

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 Part 4-JOY

This is how Lily demonstrates distress.

Loud noises, particularly high pitched girl’s voices, particularly one of her house mates who makes cockatoo noises when she is stressed, will elicit hair pulling. It begins as a little tug at her hair, not to pull but to communicate her anxiety. If the stressor continues and Lily becomes overwhelmed, the full-blown hair pull will result. Next comes ripping out the hair, pounding the face and blood curdling screams, followed by pounding the head on the floor and kicking of feet, followed by racing toward anyone standing nearby her to grab them in a death grip and bite them while ripping out their throat and hair and head butting them.

Lily rarely gets beyond the hair tug stage now because we have had to resort to medication to help her with anxiety.

It would seem to me that the most prudent thing to do is to prevent this cascade of anxiety in the first place.

So why, despite many people objecting, including parents (me), staff, Department of Developmental Services service coordinator and many others, did the management of the Agency that runs Lily’s group home/residential program move the young woman in with Lily who makes extremely loud cockatoo noises on a regular basis? And why do they make Lily ride in the van with her AND WORK WITH HER EVERYDAY? Why did they put their needs over and above Lily’s needs in making this assignment?

This issue was my last straw in trying to work with this agency.

Now I am working with another agency and other like-minded parents to put together a house that Lily can go home to without  anxiety. Now we can hope to work on making opportunities for Lily to experience JOY.

For Lily,  joy could be running up the stairs and jumping into my bed, snuggling under the down comforter with a happy squeal.

As for me, I try to make every moment count and find joy in everyday things: the many shades of grey at the Maine Coast, with the sky and fog and the water and the shingles on my house merging into one.

What gives you joy?

Examining Life: Adults with Autism, Part 3

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

Fun and recreation

One positive aspect  of having a young daughter who has severe autism is that I do not have to worry about her riding around in cars, DUI, drugs and the like. She does enjoy cars, though, especially this one.

One of her favorite things to do with Dad in the summer is to go for a ride in the Jaguar, often with a favored stuffed bear or plastic toy along for the ride. She raises the toy up into the wind and squeals with joy as if she were taking her friend on an amusement park ride.

Lily also enjoys walking the dog, skiing, walking in the woods, sailing, swimming, rollerblading and bike riding. She will walk at the mall after dark and in the rain; she does not usually shop, though she enjoys all the architectural detail on the various storefronts.

The activities at the group home she is in now are somewhat confined to mall visits, brief walks outside if the weather is good (her staff thinks it is cold if it is 50 degrees). No one knows how to manage to take her bike riding or roller-blading, forget skiing. It does take planning and effort and outings are not always successful. Her housemates do not prefer the same activities and there are not enough staff to be more individualized.

Swimming is something they manage well  because they take her  group to a pool for disabled people during the day. They cannot imagine going to the YMCA or a community pool or beach and would require 1 to 1 staff for safety, so they do not go.

It would be great if Lily could somehow be more involved in activities with the community. Her new house manager is working on this but the bottom line is cost of staff and finding capable staff.

I do not expect them to give her all the opportunities that we do on vacations and weekends. I would like her to participate in everyday recreational opportunities in the community that she enjoys and enrich her life.

Sailing