The Toll of Caretaking

Two weeks ago, our small community experienced a horrific tragedy with the murder-suicide of a mother and her autistic adult son. Although we can never speculate as to the mindset of any another person, I believe we can likely assume that the stress of caregiving may have played a part in this very sad event. At a grief counseling session with the parents shortly after this tragedy, many there spoke of their own excessive anxiety and stress levels. They expressed understanding of how it was possible that a parent could be driven to do something so drastic. 

There are so many stresses in caring for a child with autism. Mixed in with a parent's constant sleep deprivation, frustration, loneliness, and frequent isolation is the worry of who will take care of their child when they die. These parents know that their kids are not easy to live with. Who besides a parent can love a child unconditionally and tolerate all their behaviors and quirkiness?  Parents also recognize with brutal clarity how vulnerable their child is to exploitation and even abuse, especially those who are on the more involved end of the autism spectrum. 

In most situations, it is the mother who is the primary caregiver and often must forego the opportunity to work outside the home or maybe only allow for part-time employment. Women typically have a difficult time admitting or even recognizing that they may be under insurmountable stress in the best of circumstances. Compound that with the additional problems of caregiving and we may have an insight into the kind of 24 hour on-call life these parents experience. But women are not the only ones stressed. A child who requires constant supervision for safety, hygiene and overall health will tax the emotional resources of an entire family.

As the caretaker, the parent does not have much time to reflect on what the future holds. They tend to take on each day one at a time. But certain milestones will force awareness of the passage of time – as children of family friends get their driver’s licenses, go away to college, marry. All are reminders that these are not the cards the family of the person with autism has been dealt. When a parent actually takes a moment to process this information, it can be overwhelming. When will it ever end? Will it ever end?

Some possible lessons learned from this tragedy are that we have all have to help one another, especially keeping in touch with other parents who really know the day to day struggle. Also, as those of us who work with these students, we would want the parents to know how very much we care for all of them – students and their families. Our staff was so significantly devastated by this sad and shocking event, it surprised the family completely.  Would that we had known! It is in our nature to want to help, so take advantage. And should a child be placed in a group home, we would watch very carefully to look for changes in behavior, food, dress, anything that might alert us or the parents that something may be amiss. Yes, it would be different, and it would never be the same or replace home, but that doesn’t mean it is not a reasonable option to allow parents to experience their child in a different way.

We miss the two who died tremendously and think of them with very heavy hearts. My only hope is that others will pay more attention to families who are struggling and even check in on those who seem to be doing fine. Because we all know caretaking for a person with significant disabilities is not at all easy.

A Convergence of Autism and Alzheimer's

Those of us immersed in the world of autism know that the numbers of children receiving that diagnosis are truly increasing, and likely will continue even with the upcoming changes of the DSM-V. Providing the education, housing and overall assistance that the families and these children require will cost everyone - and lots! There simply is no inexpensive way to educate these kids short of denying them services. And that may be a by-product of the new DSM-V; eliminating some of the previous categories of people who fall under the 'spectrum' label and thereby not providing them the services they need. Nonetheless, the lifetime expense of a person with autism are significant, with education and housing particularly driving the costs.

However, at the same time we are seeing the incidence of autism rising, we are also hearing much about the impending tsunami of baby boomers approaching old age. As older people are much more likely to suffer strokes, heart disease, Alzheimer's, etc., their disabilities will also demand increased funding to pay for services. And we are living longer. This convergence of two very costly groups should be at the forefront of policy makers' agendas. But I certainly don't hear much about it other than notice that both populations are increasing in size. No mention of how we will be able to pay for all this.

How will we be able to care for all these people and make the services more cost effective? Certainly the focus on healthy life styles is important as it may keep older people healthier longer and out of the system. For people with autism, I think it is critical to not view them as 'consumers' but as people who can participate and contribute in their local communities. The more opportunities they have to both volunteer and even work, the better. As the rest of the community becomes more familiar with people with disabilities, they are more likely to tolerate the differences people with disabilities display. Everyone will benefit, including older people. Yes, it is a Pollyanna way of looking at things, but I'm not sure what else can be done until there is a true understanding of what the issues are that we all are facing.

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!