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

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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 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.

Mourning does not become me

Your child with autism is not the child that you thought you would have.

Following a twitter link, I came across a book, “Following Ezra” by Tom Fields-Meyer, that deals with how he has approached his child who has autism.  There are also interesting comments on his blog.

The question posed is whether or not you should mourn for the child you did not have. The author of the book has a refreshing view; he tries to celebrate the child that he does have, instead.

After many years of effort, I have been able to approach that attitude with some success.

When you give birth to a baby that is, from the start, not quite right in some way, you can grieve, accept and move on to face the challenges ahead.  However, if your baby seems quite lovely and intelligent and you lose her to autism at the age of 1 or 2, then it seems as if the child she was has died.  You have no time to mourn her death because you are thrust into dealing with enormous challenges.  You push the feelings aside and try to keep your head above water searching for answers and trying therapies, dealing with the day-to-day.

Once in a while you can glimpse that former child in the child you have; there is always the hope that you can get her back.  So you put off the mourning and accepting a bit longer.

When I have allowed myself to mourn, (or wallow in the grief more like), it can be paralyzing.  My thoughts become circular and pointless and I am unable to productively deal with the crisis at hand.  And there is always a crisis.

That is the challenge: to break the attachment to the hope that you will get the first child back and relish the rewards of who she has become.  Or not become.  Not riding around in cars with boys, not taking illicit drugs,  not doing the scary things we associate with teenage girls.

And when you do follow her around you find someone who is quite lovely indeed.