Examining the unexamined life of an adult with autism: Part 1

This is the first in a series of posts examining the question of what I think might lead to a happy and fulfilling life for my adult autistic daughter, Lily.

The first and most essential basis for a happy life is that ones basic needs of food and water, shelter and warmth, health and safety should be adequately met. Some might argue that these are Human Rights and I think we would agree that they are at least American Rights. (For some reason Republicans are now balking at the idea that Health is a human right but this is relatively new. Richard Nixon practically invented Health Care Reform).

Because Lily has little sense of self-protection or awareness of danger, she needs people who care about her to watch over her at all times and they need to be trained and vigilant. They must help her prepare food and must be trained in adequate nutrition on a small food budget and how to prepare foods safely. The staff help her care for her house and keep it clean. They drive her to and fro in a van and take her into the community. They keep her safe from harm and keep her from harming herself.

Staff who work with Lily must also be watchful and aware of subtle changes in behavior that might indicate a medical problem and be active in searching out the cause.  New “behavior” is not just a “behavior”; but, might indicate a physical or emotional problem. They must take her to the appropriate health care provider for evaluation, (providing they can find one willing to care for a nonverbal autistic person on Medicaid).

I think basic needs must be met first before expanding upon the other areas of life that enhance happiness and fulfillment. Maybe some ascetics and monks can claim happiness and fulfillment on an empty belly, but not most and not my Lily.

There are adult persons with autism who need less support in these areas of  basic need but they might still need help for a number of years managing life in a more independent living arrangement.

Unfortunately, when communities and states need to cut budgets for social services because the tax rate is so low, lower than it has ever been in this country, too low to maintain our standards of living, too low to provide for basic needs for the elderly and disabled, the already low wages paid to direct care workers in these support service industries are so low that the quality of direct care workers suffers.

I am dealing with these issues of poor quality staff and unmet basic needs every day now. Although it is frustrating that Lily is not being challenged to learn skills or even maintain skills, the more pressing problems are adequate nutrition and safety.

Why does our society now value keeping money in the pockets of the rich  over basic human rights for the disabled, the elderly and the very, very poor?

Happy and Fulfilling Life for a Person with Autism

What makes a happy and fulfilling life for a person with autism? What makes a life fulfilling and happy for a person without autism?

The theme of what it takes to make a happy and fulfilling life is not a new one. When my loyal reader asked what I think would make a happy life for my daughter Lily, I made a list of areas that I consider essential components of life to explore and examine.

  • Basic needs
  • Learning and growth
  • Fun and recreation
  • Joy
  • Spiritual
  • Creative
  • Family and Friends: Relationships

As I have written before in these pages, I am not satisfied with Lily’s adult program. I do not think it meets her needs in any of the above areas. My task, as I see it now, is to examine these areas and develop a program that does meet her needs. I have done similar exercises for my own life at times when I was unhappy or felt unfulfilled. The examination can be fun and very enlightening.

Remember that not getting what you want is sometimes a wonderful stroke of luck. 

—The 14th Dalai Lama

Housing for Adults with Autism

Why is it so difficult to imagine a new way to provide affordable living arrangements for adults with autism and other intellectual disabilities?

Recently, meeting with parents of my daughter’s group home house-mates, I heard many complaints about how things were going; poor quality diet, inadequate supervision, not enough activities individually and not enough group activities. Poor communication headed the list; the staff does not communicate with each other, they do not listen to parents, parent’s calls and emails are not returned, nothing seems to change.

One parent stated what I have heard many times: Compared to all the others, this is the best program, we are very fortunate to have found this agency and a place for our daughter. In general, parents of severely disabled children are very grateful for anyone willing to help care for their children, knowing first hand how challenging the work can be.

Being grateful does not mean we must be complacent. We must continually push for the most basic needs to be addressed; food, clothing, shelter, health. What about happiness? Learning? Community? Growth? We have no time to address these issues when we are always dealing with basic needs. Just because this is “the best there is” doesn’t mean there is no room for improvement.

The current system here in Massachusetts is no doubt better than in other states and countries because of our emphasis on education and our relative financial well-being. Major court decisions forced regulations and changes in the system, moving away from institutions and nursing homes towards community supports and inclusion. The funding for these supports is continually under attack by the legislature in these and previous budget cutting times.

I dream of a different scenario entirely, one that is supported by many changes in the Affordable Care Act, (aka Obamacare). The new system is based on what the individuals and their families actually need and not what an agency or department needs. Money is spent more wisely and efficiently when the recipients have a say in how the money is spent. The care providers are held accountable by the families and individuals who receive the services and not by the agencies that provide them resulting in less money spent for higher quality services and better outcomes.

I have no difficulty imagining a better way of living for my daughter and I am looking for others who share my dreams. I will struggle against the entrenched cemented antiquated ideas of the current system until I convince enough people that there is a better way. This will be my only legacy when I leave the realm of earth and hopefully others may follow and my daughter will have a happy and fulfilling life when I am gone.

Am I tilting at windmills?

Abuse and Neglect, New York State Promises to Pay Anyway

Sometimes, late at night, when the house is asleep, I finally have time to think about writing. Sometimes, though, I am just too tired for words.  This holiday time, when my daughter and husband make more demands than my usual dog and cat feed me level of demand, has been particularly draining. Sickness has prevailed as in many homes this time of year. I am energized by some recent articles in the New York Times to start writing this tonight before my energy is completely gone and my “rage” ( if that is the word) dwindles into the regular hyper-activity of the next day.

The Times has been running a series about the New York State system for care of their adult developmentally disabled population, most recently HERE, and HERE.

These articles enrage me because…well need I even say why?  They over-medicate, abuse and neglect these fragile people, and then they profit from it?  Is there a special layer of Dante’s Hell for these people?

Autism and Empathy, the Fixers and the Huggers

Autism and Empathy, the Fixers and the Huggers.

As I read the piece noted above from Autistics Aware, I thought of how well my daughter reads my moods. When I am completely overwhelmed, she actually looks at me with sympathy in her eyes and refrains from any button pushing games, like raid the refrigerator. When I am sick and ask for her cooperation, she always gives it. When I need a hug from her and ask for it she submits to my arms.  When she hugs, it is usually from excessive anxiety although others interpret the hug as affection.  We “neurotypicals” crave affection from our children who have autism and will take it any way we can get it.

Thank you to this blogger for telling us about the inner world of autism that my lovely daughter is unable to share yet.

 

Speaking of Love and Autism: Find a Cure

Last night, or more accurately just now at 4 am, I had a dream that my daughter Lily said: ”Love it!”  Not “Love you”, which I have not heard for many years, but “Love it!”.  In the dream, she was riding in the rear seat of a van and sort of reclining, sort of relaxed; there was talking around her. I do not remember what she was referring to except that saying “Love it!” would have been an appropriate response to the conversation.

This might seem inconsequential to most people, that their children spoke in a dream; but, for me, it is very unusual to dream about Lily in any other state except panic.  Usually I wake up at 4 am with heart beating fast and it is all I can do to stop myself from calling her house to be sure that she is alright or calling the police to rush over to see if she is being abused; nightmare stuff.  So this speaking in the night is quite unusual. When your child is an adult who has autism and lost her speech at the age of two, you tend to forget, even in your dreams, that speech is a possibility.

I think the dream comes from an article I read in the newspaper yesterday about the family of a young man who wakes from a vegetative state when he is given the sleeping pill Ambien.  Paradoxical responses like this in a small number of similar patients has given hope to loved ones that they might hear “I love you” once  again.  In the article, the son quite clearly demonstrates his awareness of his immediate surroundings, has a sense of humor, and shows his love for his mother.

As I was reading this I thought “Why don’t they try this with people like Lily?”  One little ray of hope for a family in a newspaper article and my heart has hope again that one day, somewhere, and probably by accident, someone will find a remedy, a pill, a breakthrough that will help Lily speak again.  I know that there are words in there, in her head, and some day she will be able to let those words out.

There are many avenues of research and, thankfully, more money is going into research for autism every day.  I’m not sure they are awarding the money to the right projects; but, in the United States, throwing enormous amounts of money indiscriminately at a problem is the way things are done and while they are looking at genes or documenting that anti-anxiety medication sometimes helps and sometimes doesn’t, by chance they will find some substance that will work.

Then, maybe the dream will come true; if not for me, for a mom like me, who has been waiting maybe not so patiently for the world to see what she sees: a perfect person trapped inside a body that does not perform perfectly at all.  We will all say “Love it!” when that happens.

Autism and Dementia: Christmas Memories of my mother

When my daughter was born, we did not know yet that my mother would soon be sliding down into dementia.  Around the time that my daughter lost her speech and the word “AUTISM” became a regular part of the family vocabulary, we began to notice that Mom’s cognitive skills were also in decline.  Both responded to music; both had unexplained anxieties; both were thrilled with the small traditions of Christmas, like the singing moose Santa we brought out every year.  Near the end of her life, almost any word would summon forth, from the thinnest of remaining memories, a song.

This short piece is a response to a fellow blogger who offered a “Christmas Contest” for memories of mother in 100 words.  As I find it difficult to remember my mother with any objectivity, I decided to write my answer and this is it.

Penn State, Friday Night Lights: Lessons for the Disabled Community

With all the opinions voiced about the Penn State scandal and who should have told or shouldn’t have and all the money and college athletics politics involved, many have lost sight of the facts of how and why the children were targeted for abuse in the first place.

Disadvantaged children, like disabled children,  are so much more vulnerable to this sort of thing.  Did the boys have anyone at home to tell of their experiences who would have believed them?  Were they also targets at home?  Hungry for love and attention, did they trust this sexual predator like a father figure and not want to lose him, even though they did not like what was done to them?  Was he a kind man,  under other guises, a man they trusted and looked up to and felt safe with?

Disabled children and adults are often not able to tell of their experiences with abuse, and, if they do find a way, are often not believed.  The abusers are then able to make their lives even more miserable.

There was a recent story in the New York Times, part of the long-running expose of the New York State department that cares for the disabled, that details how the whistle blowers names were not kept anonymous, despite State laws requiring it.  The workers making complaints were retaliated against by their supervisors and punished for coming forward, while the perpetrators went completely unpunished.

The grad student who reported seeing the abuse that he witnessed in the locker room to Joe Paterno was lucky that he kept his job.

Joe Paterno, aged though he is, if he was the coach they all thought he was, could have seen through all the layers and done the right thing.   A Daily Beast article, (here), by Abby Wolf, so wonderfully compares the Penn State actions to what the coach from Friday Night Lights might have done; the character building coach would have struggled, but his own higher standards would have prevailed.

(In case you do not watch TV or are unfamiliar with Friday Night Lights, the TV series captivated many American football widows who would not normally have enjoyed the games but were captivated by the characters of a small city in Texas and their football coach.)

I wish I knew that such a man existed in the agency running my daughter’s program; a man who would call the police and not cover up abuse.  Where are the Coach Eric Taylors in the real world?  Are there any in your life?

Eyes Like Lithium

I recently came across this piece http://www.utne.com/print-article.aspx?id=2147491704

(via Long Reads, from the Utne reader http://www.utne.com/Mind-Body/Eyes-Like-Lithium-Brother-High-Functioning-Autism.aspx,)

Eyes Like Lithium, by Danielle Cadena Deulen, is  a moving story describing many facets of living with autism from the point of view of the sibling of a boy with high functioning autism.

Some of us, parents of children with “low-functioning” autism, have expressed annoyance and resentment about the terms “high” and “low” functioning  as it relates to autism.  The “high” functioning camp seems to have hijacked the conversation, just as parents of the more mildly learning disabled children entirely monopolized a Parent Action Committee meeting at an elementary school that once considered integrating my daughter into its midst. ( They came to their senses as soon as they watched her climb the conference room bookcases, however.)

The vulnerability of these children, to those who have no tolerance for differences like autism, the vulnerability to the bullies of the world, at home and at school, is perhaps more intense for those who are “high” functioning, who have speech and are more able to be integrated into schools and communities.  For those children without speech, perhaps they are not seen as even worthy of the effort it takes to bully,  or they are so different that they are feared more, or maybe it is that they actually become invisible to their would be tormentors.

That does not mean that I think bullying non-existent for those with lower function. ( But what does that really mean, high and low?  It refers to IQ, as measured in the very questionable IQ tests, and also to one’s ability to function in the world.)  The bullying exists, I am sure; but, the ability to report the bullying  does not.

I have a great deal of sympathy for those with “high functioning” autism.  Their ability to “tell all” helps the rest of us to understand what someone like my daughter is unable to tell: that they love; that they hurt; they have fears and dreams; that they are, also, human.