Asperger’s or Quirky?

I Had Asperger Syndrome. Briefly. – NYTimes.com.

This op-ed piece today in the NYT wonderfully describes what I have been irked about recently: Why are these parents so worried about their children?

One parent wrote a long  description of her 16-year-old son’s “disability” and wondered why he was so different from other autistics. He was gifted, able to focus, brilliant in school, able to deal with his sensory issues, beloved by teachers and students alike; in short, probably NOT autistic!

I would have been diagnosed with autism had I been born under the current system and the label might have had a devastating effect on my life. I did not speak until I was 3 years old, had few friends, had to learn how to relate to others in a compassionate way (self-taught). If you do not think this to be true, ask my best friend from infancy who used to abandon me frequently  because I did not play well with others.

I always want to bring these mothers to my house and show them what a true disability is; but, I am sure that they would not listen or see how perfect their son or daughter really is. Someone has convinced them that there is a problem and that all resources must be mobilized for their child. Tiger mothers, helicopter parents, there are numerous tags for todays parents.

I do empathize with these parents who are worried about their children; I know that, like me, they just want their child to be happy and fulfilled.

Do we all want perfection? I do not; I prefer my humanity to be flawed and fascinating.

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

A birthday wish for James – Opinion – The Boston Globe

A birthday wish for James – Opinion – The Boston Globe.

This opinion piece in the Boston globe articulates our problem in Massachusetts dealing with funding issues for adults with intellectual disabilities. The young son is turning 21 years old and the friend  quotes the mother: “He has opened our hearts and minds to endless possibilities, but the future is scary. We want so much for him to have a full life with friends, a life that brings him joy and an ability to be a contributor to our community through real work and volunteering. Our vision for James’s future is not so different from other parents, just a lot harder to put together.’’

“To live a life in full, he needs a full commitment from the rest of us. Money is part of it. That’s reality.

My birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live it.”

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?