Belated Mother’s Day Card to Myself: Honor Military Moms

After reading all sorts of blog posts about Mother’s Day and mothers who are saints and over achievers, I’ve been wanting to share why I enjoy spending MY Mother’s Day without my family.

As most mothers of special needs children will tell you, being with a daughter like Lily can be exhausting.

Trotts and Lipmans in Belfast

My Princess was home the previous weekend so that she could visit with her much beloved Aunt Sharon and Uncle John who were visiting from California. Dad picked Lily up at her house and they drove to Maine where we all had a lovely time eating lobsters and walking the beach, watering the garden and taking walks in the woods and in town.

She also went for rides with Dad in the Jaguar and took the recycling to the transfer station.

All this was very exciting for our Princess who also managed to drink soap, pour liquid soap down the toilet (because she did not like the smell), drink seawater and eat seaweed.

On the Monday when I was going to drive with Lily back to Massachusetts, her anxiety level had doubled and whether or not it was  because she knew she had to leave the family party or because of seaweed aftermath (I can never tell) she became “unstable”.

Taking her back to her house has become a nightmare because she starts in with the pleading looks about five miles from the house. Then she starts belching and regurgitating, working herself into a full-blown panic attack. When she arrives at the house, she races upstairs to her bathroom, rips off her clothes and showers until she is calm or until the hot water runs out.

So going to get her is great and she is ecstatic; taking her back is overwhelmingly upsetting.

My Mother’s Day alone allowed me to reflect on how much I love her and how much I need to rest after being with her. We avoid the difficult transition anxiety completely. We see each other later in the week on Skype; she is smiling and happy with her favorite trusted care-giver.

And no offense to my Mom but I do not remember feeling the need to be with her on that specific day. Visiting Mom was a weekly event for us if possible and would have been more often if we lived in the same town. Why do people think that some flowers and a brunch are adequate recompense for all the years of worry and sleepless nights?

Mother’s Day was originally to support mothers of soldiers sent off to war, wasn’t it? We should support the military mothers,  especially those mothers of special needs children who are not granted full medical coverage for their children’s problems.  Apparently, Tri-care does not adequately cover autism treatment, especially after retirement.  (See petition HERE to urge Congress to make autism treatment available to all military children.)

So keep your baubles and flowers  for next Mother’s Day, too. Give the money to the autism charity of your choice. I will hopefully enjoy another peaceful day in my garden, resting up for another whirlwind day with Lil the next weekend.

And support the Caring for Military Kids with Autism Act  http://cmkaa.org/cmkaa-press/

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.

Autism Awareness Month: No Time for Old Ideas

“Que sera sera, whatever will be will be, the future’s not ours to see, Que sera sera…”

When I was just a little girl
I asked my mother, what will I be
Will I be pretty, will I be rich
Here’s what she said to me.

Que Sera, Sera,
Whatever will be, will be
The future’s not ours, to see
Que Sera, Sera
What will be, will be.

On NPR yesterday, Terry Gross on Fresh Air was interviewing Doris Day about this song, saying that she, Terry, had always disliked the song and that she had heard that Doris had hated it also.

My mother used to sing this song to me when I was a small child, around the same time that it was a hit song, in the 1950’s. I loved having my mother sing to me and never thought about the lyrics until I was a teenager and became more socially aware. Then, in the activist 1960’s, “what will be will be” just did not cut it with me.

When my own daughter was small I sang to her, too. The songs that my mother sang came into my head almost automatically. When we received the autism diagnosis, I revisited this song as a way of accepting things as they were, of letting go of my dreams of the perfect little girl and the perfect little life.

Gradually I rejected this song again, in favor of “You are my sunshine”  and other more uplifting tunes. (Lily sometimes puts her finger over my mouth to get me to stop singing; my voice is not the best.)

We are now being told that 1 in 88 children will be diagnosed with an Autism Spectrum Disorder by the age of 8.

That is 1 in 54 boys.

That is 1 in 252 girls.

“What will be will be” cannot be our theme song.  What should our song be?

Examining Life: Adults with Autism, Part 7-Friends and Family

Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.

Friends and Family

Lily with friends

I am trying to find families for a new and exciting home for my daughter. We are planning a home and day program that will meet the specific needs of each individual and lead to a happy life in the community.

Finding compatible parents is the first step because we all will need to be actively involved for this to work. We want to be part of her life and know and like the families of her housemates.

Finding collaborators to provide the services who share the goals and that we feel we can work with is also paramount. We have successfully brought together two groups who are committed to the same goals that we share and an academic center devoted to improving life for adults with autism.

Because there are not many females with autism compared to males, finding compatible house mates has been more difficult.  We are planning a mixed male/female house. I am not sure how much it matters to Lily who she lives with because she really bonds with her staff more than with her peers. Maybe if she lived with a young woman who was verbal and they shared the same preferences for activities in the community, perhaps she might make a relationship with a peer.

So far Lily’s female peers have been either not interesting to her or a painful annoyance. One of her current housemates screams high-pitched loud protests when she is anxious, (which is frequently), and Lily does not tolerate that well. In past situations, Lily’s aggressive behavior has disappeared when an offending noise-making female was moved to another house.

This is one of the many reasons we are making our own program; the current Agency refused to listen when we asked them not to put this loud woman in the house with Lily because Lily had already had problems with her at the Day Program. When they refused to change their plans, we asked that Lily and the woman not be in the same group at the Day Program; so far this has not been achieved.

Lily does have friends who are family friends and  she can be very social with people that she knows accept her as she is and do not expect her to be like everyone else. Staff who care about her will see the side of her that we see, the caring loving side, not the monster side.

My hope is that when Lily is comfortable in a place with staff who care for her, accept her and meet her needs,  she will blossom again and we will have the daughter back that disappeared when she turned 22 and left her school for the big bad adult world.

In the meantime, when she is at home with family and friends who love her and respect her she is generally happy and less anxious. Thank you, family and friends, for being there for her and for us.

Choosing the Wine with Uncle John

Cousin Edie, Lily, Aunt Sharon

Lily Dancing with Uncle Harvey

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!

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.