This post, from Diary of a Mom, beautifully illustrates how well we speak about doing what is right and how poorly we as a society execute those ideals.
This post is the sixth in a series in response to the question of what I think would make a life happy and fulfilling for my autistic daughter, Lily.
I have often envied people who have a strong connection to one of the organized religions; the emotional support gained by being part of a community of like-minded, caring people as well as the guidelines for directing one’s life path, the moral guidance, the comfort of a GOD to pray to, the comfort of being in the right.
In this instance though I am sad for my friends whose autistic children are not accepted in their church or synagogue because of behavior issues or embarrassment. They cannot share that important aspect of their lives with their child. The security they gained from being part of a larger community disappears. They might even lose their cherished faith in a god who could make their child suffer in this way.
Spirituality is an important part of our lives as humans whatever form it takes. I am most comfortable communing with nature instead of inside a building with everyone dressed in their best clothes, on their best behavior. I am lucky that I can share this with my daughter and that she seems to really “get it” that we are all the same and at one with nature.
She even partakes in sampling many of nature’s gifts in their most natural state such as leaves, flowers, rose hips, seaweed, and pine needles. She drinks the elixir of the gods, seawater, whenever she finds the opportunity. She carries rocks as her totems, often preferring the textures to her stuffed animal friends; they, too, can be licked!
When I first began my middle-aged search for what had gone missing in my life, I remembered how as a youth I had attended church with my friends of all religions and denominations. I sang in the choir, attended Sunday school and summer bible camps. At college I took comparative religion courses and looked at the fads of the times, like Transcendental Meditation and yoga, without finding any one way that suited my inner life.
I finally concluded that my rumored family history of Native American blood lines must be influencing my spiritual life, as I feel that all things, including the rocks and the water and the earth, are related; as they are in a physical sense, so too in a spiritual sense.
Lily understands this as well; it is not something she needs to be taught or that needs to be explained. Perhaps the whole notion would seem primitive, and therefore beneath them, to those who base their lives on reading a book that other people wrote many, many years ago. The indigenous people of the earth have a connection with how things really are that layers of writings by the powers-that-be-in-the-land will never get even close to.
What do we know, actually, about the universe? What are we doing here on this earth? Is it going to be: “So long and thanks for all the fish?”
This is an attempt to think out loud about what would enhance my daughter’s life in the area of creativity. Here is a photo of her at school a few years ago, rolling her eyes while being asked to make Christmas decorations out of recycling materials.
(The shortened bangs are the result of the birthday cake incident that I spoke of in a previous post.)
When we are children our lives are filled with manufactured opportunities for creativity; the day-care or preschool activities include finger painting, watercolor painting, painting rocks, play dough, clay, making collages out of pasta shapes, nature collages, paper mache, plaster casts, block printmaking, music, drumming, recorder, symbols, singing, listening, dancing, stories, making up stories, acting out plays, pretend play with toys or with other children and adults; the list can be endless if the adults are imaginative and value instilling creativity in their young children.
Of course, it could just be that there are not enough quality care givers in day care and schools or that the parents are over worked and over stressed and the TV becomes the babysitter and creativity takes a back seat.
For Lily as a child all the messy arts were extremely problematic as she could never get the idea that you were not meant to eat the play dough or paint your mouth. This has not significantly changed in that often she cannot overcome her impulse to put everything in her mouth and if it has a lovely color or texture even better! At school they were able to gradually introduce the idea that she could roll out snakes of clay without eating it and paint on some glaze without sucking on the brush.
(If I could show you the other kids in her class you would see that they are all contemplating eating the candle.)
The school Lily attended valued music and art highly. Many lessons were devoted to using crayons and paints to color and copy pictures over and over again. Lily hated to color and I was never sure if she kept eating crayons because she enjoyed it or because she wanted to get out of doing the activity. She never learned to play the violin but she did learn the keyboard harmonica. She really detested practicing and would only demonstrate her proficiency under ideal circumstances.
The only art project Lily ever seemed to enjoy was the one where you make strips and shapes of color by ripping up magazine pages then glue it on the paper in various ways. It might be abstract or maybe “painting “in the shapes of the picture with paper instead of marker or crayon. The result was always beautiful to my eyes and she liked to do it! She also would take pieces of words to build sentences, but that required a lot more encouragement on my part and she felt more pressure to perform in a way that she wasn’t sure that she could.
What she really loves is listening to music and dancing. She loves all kinds of music including “Classical” music and symphonies, Afro-pop, The Beatles, Hip Hop/R&B and Mom and Dad’s old rock and roll. She dances with a side to side swaying motion, holding on to her partner with both arms, often from around your back with her hands locked on your arms.
Even though Lily has no speech and cannot write, she nevertheless enjoys hearing stories and poetry read aloud. She has little attention span for boring wordy plays or TV shows, but if it has music she will watch with glee. Disney always pleases and The Little Mermaid is a favorite.
One thing that distinguishes severe autism from other intellectual disabilities is that the children have no pretend play. They do not make up scenarios with their dolls or cars or feed their stuffed animals. They spin the wheels on the trucks instead of race around the floor with them. There is very little back and forth play and this makes it very challenging for the teacher or care giver to play creatively with them and hold their attention.
To imagine a creative life for Lily as an adult, I have to think of what Lily actually likes to do, what I think Lily is currently cognitively able to do, what might be Lily’s cognitive capacity in the future, and what her care givers would be able and motivated to help her achieve.
From the above list, the only thing that stands out is music and dance. We must somehow convince her direct care staff that it would be more fun for everyone if they turned on the lights in the living room, put on some music, and let it all hang out!
As for expanding the list of possibilities for Lily in the future, stay tuned!
This is a call for parents of ASD children who have transitioned into adulthood to send stories to be included in a symposium. If you know of anyone who might be interested please pass it on.
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.
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?
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.
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.
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.
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.