Happiness is…

If happiness is the key to life, and that is what we all want from life, how do we design a support system for adults with severe autism that encourages happiness?

First we have to find out what makes an individual person happy.

To do that, the person must have a means of communicating to others what makes them happy.

That is the first goal, to encourage and respect the communication of those that we care for.

Behavior is communication. We must try to see past the unpleasant behavior to what is being communicated by the behavior. Medications mask the behavior and silence communication; that is disrespectful of the attempts of the person to communicate their needs and opinions.

If an adult with severe autism has no reliable means of communication we must help them find ways that work for them or we are not doing our jobs.

Happiness is  an  “unalienable right” according to the US Declaration of Independence. I think it is time that this right is applied to those of our citizens with intellectual and developmental disabilities.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

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Creativity:Planning for a Happy and Fulfilling Life

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.

Smelling the candle

(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!

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?

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?