” Things fall apart; the centre cannot hold;”-William Butler Yeats, The Second Coming
“You can’t make an omelet without breaking eggs.”
” Things fall apart; the centre cannot hold;”-William Butler Yeats, The Second Coming
“You can’t make an omelet without breaking eggs.”
Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.
Friends and Family
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.
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 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?
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?
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?
There is controversy around the various ‘bio-medical’ treatments of autism and one of the most controversial areas is diet. Many parents and physicians think that their children with autism are helped by restrictive diets of one form or another, the most common variant being the gluten-free/casein-free diet. Others include Feingold diet, the Specific Carbohydrate diet and the low-oxalate diet.
A recent study of the nutritional issues in autism can be found HERE.
When my daughter was in her late teens she developed symptoms of anxiety: pacing, increased tantrums, aggression toward some of her teachers and upper GI symptoms of regurgitation and belching. The neurologist recommended trying medication with risperidone. I was not ready to make that leap at the time and the school did not approve of medications for behavior control anyway.
The school did not approve of restrictive diets and supplements either. Their method was to increase the student’s tolerance for a variety of foods by slowly encouraging new tastes, smells and textures. Many children with autism are undernourished because of multiple food aversions and self-restriction.
After I attended a conference on the bio-medical treatment for autism put on by the group Defeat Autism Now! (DAN!), I thought that it could not hurt to try some diet and supplement changes to see if it would help. The school was willing to try the gluten-free/casein-free diet for 3 months and we also gave her some vitamins C and B as well as a balanced fish oil supplement.
The short story is that her behavior and happiness level improved immensely with this small change in what she ate. Even her teachers admitted that she was able to control herself more easily and that she was able to concentrate longer in class. We added some digestive enzymes and things continued to improve. When the neurologist mentioned trying a low-glycemic index diet for seizure control we instituted that as well. Her last year at school was her best ever. Her noise aversion disappeared and she was able to enjoy bowling for the first time. She began learning to use a communication device and was more connected with people and more social. Her gastrointestinal symptoms improved and she was more purposefully energetic.
The longer story is that when she transitioned into the adult world they refused to continue her diet and despite many attempts to change things we have been completely unsuccessful in instituting even a reasonably healthy diet at her house. We think we are making headway, we get nutritionists and dietitians involved, we get a commitment from the Agency to provide the diet (which is prescribed by a physician), then the staff at the house changes and all is lost to the wind.
Now, sadly, we have been forced to go the medication route anyway and are dealing with yet another set of side effects. We are also changing seizure medication; tapering up and tapering down. And we have yet another house manager to educate about food.
I am in constant awe of the parents who have been able to keep their children at home, who have control over what their children eat and how they are treated. It is extremely difficult to maintain these restrictive diets even at home and it takes maximum dedication and caring to do so.
So stop making fun of those over-protective moms who won’t let their kids eat the birthday cake; support them instead and be glad you do not have to do it at your house.
One of my favorite measures of “well-being” is eating and appetite; when we are happy and contented, most of us enjoy eating and sharing meals with friends and family. When anxiety and depression set in, this simple and universal pleasure is lost to us.
A recent piece in the New York Times shows families of all types eating together and enjoying the “feeling that everything is going to be all right, if only for the moment”. The photos are by Stephanie Sinclair and text by Sam Sifton.
Our family, like many these days, does not gather together often enough because of international travel for work and the life styles of our extended families. We did recently have my husband and his three siblings gathered in our house and our daughter who has severe autism was able to join us.
We had been warned by her staff at her group home that she had been unstable and dangerous after a recent medication change. They advised us not to bring her home for this gathering. What a mistake that would have been. In the loving arms of her family, eating, talking and laughing about good memories, her anxieties melted away and we enjoyed the best times for a long time, all with family.
If only we did not all live on opposite ends of the earth…
I have written before in this blog referencing the ongoing New York Times reporting of abuses in the New York State Office for People with Disabilities. Now, in this article today, the issue is: Why is the state punishing the man who is reporting the abuse?
It is, of course, possible that we do not know the whole story. It seems to me, however, to follow a pattern that is all too common in these whistle-blower cases nation-wide; the whistle-blowers lose everything and the evil-doers are never punished.
Let’s hope that in New York the good deeds of this direct care provider serve to force the system to improve and that he will “go unpunished”.
In this Age of Autism piece, a parent bravely shares the experience of making the decision to send his child out of the home to live elsewhere. As I was reading, and crying, I was also remembering the time I had to make the same decision.
LL was 11 years old and I was trying to work full-time as an Obstetrician, including over-night call, while my husband lived and worked in Russia. I had a Nanny who would stay over when I was at the hospital and take LL back and forth to school. We were on vacation in Florida, Lily was having a melt-down about something, going to bed, I think, and Nanny said to me: “You should put her in residential school. She is autistic after all”. I really blew up at her at that. Nanny left to visit her boyfriend and she was supposed to meet us at the plane for the flight home; we never saw her again.
When we were home in Boston, I tried to hire another Nanny. The agency sent me a girl with narcolepsy. At that point started to think about my life and LL’s life and how we were doing together. When I was not on call at the hospital, I often did not sleep because LL did not sleep. And she was getting bigger; always strong, she was able now to overcome me physically when I tried to prevent her from emptying the refrigerator at 3 AM. When I was working at the hospital, I was not sleeping either. Sleep deprived people tend not to have the same level of patience as they would like and do not often have enough energy to provide the teaching and guidance required for difficult children. So she was really not getting what she needed and I was certainly not getting I needed. We were both losing out. After much agonizing and discussion, LL went to the residential part of her school.
Her teacher, who was very attached to her, told her that if she behaved really well Mommy would take her back home. The school asked me to leave her there for 3 weeks before I visited (agony) and when I did finally visit LL was perfectly behaved and you would never have known that she had any behavior issues. She kept looking into my eyes as if to say: “Now that I am so well-behaved, may I come home now?”
Every time I took her back to the residence I talked to her about how it was for the best; every time we both were miserable. But, I felt I had no choice. Teaching a child with the high level of needs that she had while trying to work is nearly impossible without an equally high level of support. I could not do it alone even if I did not work. I did not know how to parent and teach her at that level. I so admire the parents who do keep their children at home and are able to be both parent and teacher. I wish I could have done that and feel guilt to this day that I was not up to the challenge.
We as a society need to give more support to our families; more training, more “respite”, and more understanding. Parenting is hard enough with “typical” kids; when you add the sometimes life-threatening behavioral issues plus the speech and communication issues plus the medical issues it is most-times overwhelming.