Abuse in State Hospitals

This morning in the San Francisco Chronicle was a chilling article regarding the possible (and very likely) abuse of people with severe disabilities in California State Hospitals. Apparently, the State hospitals have their own police force who should be monitoring and investigating the allegations of abuse, but aren't. A significant number of clients have mysterious cuts, bruises, broken bones and even deaths that are not thoroughly examined, leaving the families to wonder what could have happened in this place where they thought their loved ones would be safe. With a staff:client ratio of 3 to one, and a cost of over $300,000 a year, it is hard to imagine how something like this could still be happening.

When I was going to school in the early 70s, there were many horror stories of the 'snake pit' environment of some of the state hospitals. But then reforms were to be put in place, and changes legislated requiring better care. Perhaps the most fortunate change was the closing of some of these large institutions and bringing people back to be among the communities there they can live, play, and if possible, work. I would hope that in the community settings, there would be better scrutiny of what goes on in these community group homes.

I cannot imagine the grief and guilt these families must feel when  a family member is hurt.  Most likely the injured person could not tell what happened to them or who did it. But to be thwarted by the very police who are in place to offer protection as well as to investigate some very serious situations is shocking.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/02/24/MN6T1NBIU4.DTL

Moving Into a Group Home, Episode 2

Two weeks ago, one of our adult clients, Jane, made a hastily arranged move into a group home. Jane and her mother had been experiencing more than their typical problems and Jane's mom finally realized she couldn't do this anymore. At the same time, the staff in our program had noticed a deterioration in Jane's behavior, reminiscent of a previous time when her medication dosages were part of the problem. Jane was supposed to be responsible for taking her daily medication, but occasionally would either refuse or forget. When this same set of behaviors occurred previously, Jane had to be hospitalized to achieve stability with her meds. Now that she has been placed in a group home, her medication is being monitored closely. As a result,  Jane is back to her normal quirky self and seemingly, very happy. And she announces each day that she loves her group home. Hopefully, its not just the honeymoon period!

I'm old enough to remember the days of the 'snake pit' institutions that housed people with developmental disabilities and mental illness, often all lumped into the same categories and therefore sharing the same space, however inappropriate and inadequate. I remember visiting a state hospital while still in college in the early seventies and being horrified by what I saw. So, I certainly understand the reluctance of some of our parents who also remember those miserable days and are determined never to place their beloved child in such a situation.  Fortunately, I believe things have changed for the better. People are living more within communities and being given the opportunity to participate more in the activities that their families and friends do.

So, what I've noted about the students/clients who have been placed in group homes over the last 10 years is a positive shift. Those students who have been placed have done surprisingly well. One of our students was so rigid that even going into a different classroom was a major undertaking on the part of the staff to prepare him. So, when his relatively young father died, his family decided they had to place him. I could hardly imagine it happening without hearing about it on the 5 o'clock news. But to my surprise, it went incredibly smoothly. And that has been the story in general with group home placements of late. Because the group home staff have time to focus on the clients, the clients are often able to do many more things than they were able to as part of a family. By this I mean that any family life is ever changing where the brother's or sister's piano lessons, soccer practice, tutoring, mom or dad's late meeting are often emblematic of the constant change. A fairly predictable daily schedule is the norm for the group home. And frequently, the group homes are able to take trips to places like Disneyland, snow trips, and always Las Vegas, though that one escapes me.

The other notable fact is that the clients tend to lose weight, but in a good way. Their food intake is monitored carefully, they never seem to feel deprived, and their level of exercise and physical activity increases. They can't sneak into the pantry when mom's on the phone or distracted in some other way.

Once a child is placed in the group home, parents of course continue to be very much a part of their lives and spend time with their child - usually as much as they want. Many of our students go home for weekends or join their parent for dinner several times a week. We have a parent who comes once a week to join her son for lunch here at school and often on weekends, the family has him at home. While initially, he didn't understand why his mom was leaving, he has come to accept the routine and the two of them have some lovely moments together.

No question, making a decision to place a child is monumental for any family and I'm certainly not advocating group home placements over home. But it is with some relief that I can report my observations that most group homes are run very well and the people running them seem to genuinely care for the clients. So, when that day comes, parents can have a sense that a placement is not abandonment - it is an inevitable passage and better to be a part of the decision and know the choices than to have to make a decision too quickly.

Moving to a Group Home

Clearly one of the most agonizing decisions a parent has to make is when and how to place their child with autism (or any other significant disability). This morning, we got a call from a distressed single parent, overwhelmed by the needs of her adult daughter, Jane. Over the years, Jane's mom has carefully explored the options for her daughter, but even in very difficult times, still decided to keep her daughter at home. Like so many other parents, she has concerns about her daughter's safety. She also knows no one will care for Jane in the same way she does. Who will talk with Jane when she is in a bad mood and not get frustrated with her? Who will help Jane get through her sometimes difficult behavioral periods that can last days at a time? Will her new caretakers enjoy Jane's quirky humor and delight in her simple pleasures? This is the stuff of nightmares for many parents!

Earlier this year, one of our older clients (43 years) was placed in a group home by his widowed mom, again after long and careful consideration on her part. Always anxious in the best of times, Hank was undone by the thought of change. As he is always quite verbal and worried about any change, Hank would say heartrending things like "my mother doesn't love me anymore" or "I'll never see her again." Needless to say, this didn't help his distraught mother one bit, as she already had tremendous guilt in placing him. So, it took much reassurance to both parent and child that both would survive. And we had to assure the mom we would carefully monitor Hank's demeanor, dress, food - all those things that might indicate any issues. She had many tearful calls to us after placing him, and at times, vacillated. But when provided support for her decision and assurance that our watchful eyes would keep track of how things were for Hank, both he and his mom have settled into a contented acceptance of their situations.

But back to Jane and her mom. Although not the ideal way to make such a big decision, Jane's mom was feeling particularly desperate this morning, and called her long time social worker as well as our staff, and said it had to happen today. She and her daughter had come to a point where living together was beyond what the mom could do. Amazingly enough, the social worker knew of an opening in an appropriate home, and arranged for Jane to go there today. Jane's mom is bringing  her things tot he group home and one of our directors particularly close to Jane has accompanied Jane to this new place. At first when Jane heard about this, she was delighted, mostly because she knew she would get to see a golden retriever of the social worker, which she loves. But the dog won't be staying at the house, so that is when we will have an idea if this will just be for the weekend or beyond. Not an easy day for either Jane or her mom, and not going to be an easy weekend.

A New Year's Resolution...2012

Watching TV, internet or reading the newspapers, we are bombarded with 2011 lists, based on whomever's opinions; 10 best/worst movies, 50 most significant events, 75 topics most discussed, etc. Just who are these people anyway who make up these lists, and why should we assume their opinions are ours? But more importantly, what do these lists have to do with real people? I suppose it makes us reflect somewhat on what occupied our minds over the last year, but let's face it, its all hindsight now. And unless it makes us change our direction to not repeat mistakes, its probably better left in the past.

So, let's concentrate on moving forward. But rather than making resolutions to be forgotten in two weeks, let's take a lesson from a child with autism and learn to live in the moment. If we would practice the zen-like mindfulness of these people, we would appreciate our surroundings, smile more, give more compliments, be better focused and therefore work better, improve our sleep, minimize stress - so many upsides! Maybe even reduce wrinkles and gray hair - I'm liking this more by the minute!

Okay, so basically I'm talking about thinking positively and being present in the here and now. It sounds so easy, but we all know it will take effort, maybe significant effort, but so worthwhile. That's my hope for 2012. Happy New Year!

Learning by Doing

"To 'learn from experience' is to make a backward and forward connection between what we do to things and what we enjoy or suffer from things in consequence. Under such conditions, doing becomes a trying; an experiment with the world to find out what it is like; the undergoing becomes instruction--discovery of the connection of things." John Dewey wrote those words about education way back in 1916 and they are still very relevant today. And even more so regarding the learning process of autistic persons. While rote learning is important in autism to master routines, it is also important to recognize that people with autism need to learn by actually doing things - making things, exploring things, and capitalizing on their passions and curiosity to figure out how the world works.

The mystery of how learning actually occurs is the subject of many education policies, but as John Dewey noted in the last century, we really understand things best and retain that information when we actually experience those things. Simply put, we learn by doing. The more real experiences we can help our students have, the better their understanding of their environment. They may not be able to explain the how and why, but that doesn't mean they don't get it. Hands on activities are critical to learning - from facilitating play with 3 dimensional characters,  figuring out how to put simple and complex puzzles together, building with Legos to building complicated machines. You just can't learn to ride a bike by learning the word b-i--k-e or watching a video - you've got to get on one and get going.

So many of our students give us a road map for their learning style through their 'restricted interests and activities,' which is part of their diagnosis. Perhaps if we look at 'restricted interests and activities' and change those works to something different - passion, focus and action oriented -  we'd have a better idea of how to approach their teaching. It is all in the way we choose to frame it.

Last week, a friend introduced me via the internet to a 14 year old named Joey who has been involved in Detroit's Maker Faire for kids on the spectrum who enjoy making things.  Joey writes his own blog (http://lookwhatjoeysmaking.blogspot.com/) and while the spelling is not perfect, the enthusiasm is clear and his creations are very imaginative. How wonderful is it to have an outlet for all that creative energy! And how obvious is it that Joey has mastered many concepts via his creations. My guess is that Joey is one of those kids who learn by doing things and figures out the how and why of things through his experience. With kids on the spectrum, most concepts are better understood with the actual practice rather than a drill at a desk. And we already know that most information truly take in is visual. So less talk about the whys and the wherefores and more focus on doing!

Thoughts on Thanksgiving

Notwithstanding the difficulties that families have living with autism, there are still many positive things we all learn from being around autism. Probably the one thing I find the most valuable is the Zen concept of living in the moment. The world around us may be falling apart, our budgets may be cut to the bone and discord among our politicians reigns, but that doesn't bother kids with autism. What do they care about all that and indeed, why would they? They are much more concerned with the present and what is right in front of them. They make us all practice "mindfulness", and teach us that we should focus our senses on what we are experiencing in the here and now rather than thinking ahead and anticipating trouble. I often wish that when I wake up in the middle of the night ruminating about all the things that keep me up I could have the presence of mind to simply breathe deeply and listen to the darkness. Occasionally, I remember to try to be in the moment and relax, but typically my mind is racing.

So, this morning in our staff meeting, it was particularly delightful to hear from our teachers about the things going on in their classrooms. One teacher told us of her excitement that some of her students are improving their abilities with AAC devices. On her last field trip, one of her students told her via his device to slow down and the other told her to get on the freeway! (She assures us she was going the speed limit!). Another teacher talked of the Thanksgiving luncheon that has become a tradition here. This teacher started the lunch a few years ago, inviting other classrooms to participate and families as well. Each year, more people join. So nice to give families the opportunity to join us and be with their children in a safe and fun environment. So, as I write, the students, staff and families are arriving to share the meal that many have prepared, including the students. These are all little things but how nice to hear about the simple things that make our days so wonderful. Next time I wake up at 3 am I will try to remember these simple things and embrace the day with the enthusiasm of our students. I have a lot to be thankful for,  not the least of which is the ability to be part of this great program and part of the lives of such wonderful people. Happy Thanksgiving to everyone!

Adolescence and Autism - Don't Stop Teaching!

People with autism may go through many different developmental stages in their lifetimes, probably the most dramatic being adolescence. Puberty is typically evident in our autistic kids a year or two before there are any physical signs, and then, most unfairly, lasts much longer than it seems to linger with typically developing students. Very few people recall those mostly middle and early high school years with nostalgia, so just imagine the chaos the hormones inflict on kids with autism. But there is some good news for those families in the throes of adolescence. If we can get their kids safely through the teen years without too much upheaval, they typically arrive on the other side of adolescence calmer and more relaxed.

Another phenomenon we’ve seen is that during puberty their learning seems to plateau or at least, not progress as it did in earlier years. That is when schools mistakenly want to limit educational offerings to only functional work to match their apparent halt in acquiring information. But I think it is important to recognize that this ‘hiatus’ from learning is likely only temporary. While we clearly need to emphasize the acquisition of functional skills and work on independence, we should keep in mind that as they exit puberty, people with autism will typically go through another uptick in their ability to learn new things. At least, that has been our observation, with all the students we have seen move from childhood to adulthood. Puberty grinds everything to a crawl while emotional and behavioral problems become paramount and then, they begin to get back to where they left off in their pre-teen progress.

So, it remains important to continue to present information to these students, even if it seems futile or useless, for we never know when that window of opportunity to take in information might open up again. To that end, I feel that it is important to continue to explore academics and present science and math and encourage opportunities to read. The students need to continue to be challenged and engaged in activities as they move into adulthood. We all need to keep our brains stimulated and open for learning, and people with autism are no different. Who knows what we may discover?