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

Examining the Unexamined Life: Adults with Autism, Part 2

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

Learning and Growth          

Throughout my life, teachers, professors and mentors have always recommended “life long learning.” “Medical School does not stop when you graduate.” People who deal with dementia recommend adult learning to keep brain cells active and formulating new pathways to stave off Alzheimer’s disease, dementia and aging. Elder Hostels, Senior Colleges and Brain Fitness Programs are designed to continue learning and growth in adulthood.

Why then, do adult programs for intellectually and developmentally disabled offer no stimulation and stop all programs designed for learning as soon as the individual leaves school and enters the Day Hab?

The primary reason is that attitudes in the current system are that the individual has no capacity for learning and it is a waste of time and money to try to teach them anything.

How much sense does this make? Because a person “turns 22”, do they magically become a different person from that day forward? What programs they were making progress with at age 21 and 364 days no longer work at age 22?

We know that the brain is elastic and plastic and even if damaged by whatever damages these autistic brains, or cerebral palsy brains, or traumatic brain injury brains, can and should be stimulated to grow and learn. The progress may seem slow to outsiders and I suppose there are some individuals who have a disorder that means that they will not progress at all. For most people with autism, though, I would argue that they are learning even when you think they are not even paying attention to you.

The elements of learning and growth MUST be present for Lily to feel happy and fulfilled. At present, after 3 years at the group home of trying to achieve some adequacy of basic needs with only partial and temporary success, I am seeing that no learning can really be expected to take place unless the individual feels safe and cared for and adequate nutrition is provided. The staff must be willing to see Lily as a person capable of learning to have the motivation to teach her anything. She must be motivated to learn and the staff must be trained in patience and perseverance.

Just maintaining skills that Lily learned in school has been a challenge. The first time we visited her after she had moved in to the house, we picked her up for the weekend and the staff person said to us: “Is she a feeder?”

Perplexed, we asked, “What is a feeder?”

The staff person replied, “Well, she won’t eat unless I spoon feed her.”

On graduating from school at age 22, Lily had impeccable table manners and used her utensils better than most Americans. She tied her shoe laces, dressed herself, showered herself and could shave her legs with help. She was able to help prepare meals, do the laundry and clean windows (as well as other house keeping skills), with assistance.

Now, after 3 years of neglect, she eats like a gorilla, steals food from others, uses her hands while eating and licks her plate. When I say to her,” Why are you eating like a gorilla?” she gives me a twisted little smile and picks up her napkin and fork. They no longer ask her to do things independently so she hands me the towel and her shoes to help her when she comes home. She is now, “Princess Lily”.

The 45-year-old son of a friend of mine spoke very little when I met him at age 20. Now, his speech is very much in evidence as he learns the ways he can enjoy music, movies and communication with his new iPad.

Learning new skills improves self-esteem; behavior improves as a result. This leads to better acceptance by the community and more opportunities for community inclusion in volunteer, vocational and recreational situations. A major area of happiness and fulfillment for anyone involves giving purposefully in the community and building relationships. This is no different for Lily. Intellectually disabled individuals were secreted away in  institutions  because of society’s fears and prejudices, not because they wanted to be hidden away.

A life of happiness and fulfillment must include abundant opportunities for learning at all ages and all abilities. I wish for Lily to work on communication skills first and foremost. This is her greatest need.

Study Finds Mercury in More Northeastern Bird Species – NYTimes.com

Study Finds Mercury in More Northeastern Bird Species – NYTimes.com.

Mercury poisoning is one of the environmental toxins implicated in the uptick in numbers of children diagnosed with Autism Spectrum Disorders. Our children are like the canaries in the coal mines, like the wood thrushes in Maine, vulnerable and damaged.

The “Honorable ” Governor of the Great State of Maine (he whose name shall not be spoken), wants to gut all environmental laws enacted to lessen mercury and other pollutants in the environment.

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.