As Time Goes By.....

As this decade draws to a close, I can't say I'm particularly sorry to see it end. What with 9/11, Enron, unnecessary wars, state and federal budget fiascos, the Wall Street mess, obscene executive compensations, political inertia, and terrorism lurking around every bend, I say good riddance to a miserable era.

While the world was falling apart, this was a very eventful decade for me. I took over my position as Executive Director of the Morgan Autism Center in 2000, after 23 years working as both a teacher and program director. This was not a planned transition and took some time adjusting to the suddenness of it. Along with my change in position, the program needed to move to a different site after 21 years in Los Altos, but had not yet identified that site, with time quickly running out. This was just before the dotcom crash, so prices were still sky high. While searching desperately for the new place, we were also going through our three year state certification review, which is a two day intense ordeal that takes months to prepare for.

During this same time, I lost my oldest sister to breast cancer, and my family had to move my mother to an assisted living home for her increasingly severe dementia. Then, miraculously, and with just a few months left before the school would be forced to camp out God knows where or close, we found the church in Santa Clara in May of 2001 and moved that June, surprising all of us as to how resilient our students were.

We were at first very grateful to have found the place in Santa Clara, but as the economy crashed for the first time in the decade, we began looking for a more suitable space and found that at our current site, the old Cory Elementary school in the San Jose Unified School district. Here, we have much more room (although there is never enough!), and we've been able to expand our program offerings to include on site trainings and workshop opportunities.

Back to the beginning of the decade, after we found the church site, it was blatantly obvious that in our position as long time service providers for people with autism, we had the opportunity to take the leadership role in educating the greater community in understanding autism and offering information about effective interventions both medical and educational. The numbers of people being diagnosed with autism continued to rise and very few organizations had our longtime perspective of how to work best with these people. So, with our ongoing collaboration with Santa Clara University, 2010 will mark our 9th Annual Autism Conference. We have provided six to eight workshops/lectures each year, in-services to public schools, consultations to schools both public and private, parent support and information, teacher practicum support, pediatric rotations of residents from Lucile Packard Children's Hospital, in addition to the direct consultations we have with San Jose Unified School District and Santa Cruz County Office of Education. We have affected thousands of families through the expansion of our services.

So, while the economy flounders once again, and the state and federal government remain dysfunctional and paralyzed, we have no choice but to hope for better times in 2010! It can't possibly get much worse.

The Holidays with Autism

Holidays are the time we want to be with our families, even when it involves the trials of travel, traffic delays, and of course, the turkey. (If people really love turkey so much, why don't we eat it more often? I think maybe its symbolic of the holidays - if we did it any more often, we'd likely kill one another). And yet..... everyone loves the holidays, right? Stress and the holidays seem to go hand in hand and it all seems to be about this idea of getting together with our families. Why is that? What is it about our families that make us slightly (or maybe totally) crazy? Maybe its because we tend to anticipate how others may behave or what may be said, and if that expectation materializes, it can activate long held-in-check emotions. Or maybe its just because too much emphasis is put on the idea of everyone in the same place at the same time - and being happy while doing it.

But what is this ostensibly Norman Rockwell scene like for families with children with autism? When families congregate, typically the adults expect to have time catching up on all the goings on since the last visit and the children are expected to have fun playing because, it is assumed, all children love to play. But that's not likely to happen when there is a child with autism around. No doubt, some adult will have to watch the child carefully. And that usually means being in a separate room by themselves watching "Thomas the Train" or other favorite that will keep the child occupied and not running through the house disturbing all those others who want to be together. How fun is that?? Not exactly in the spirit of the holidays and sharing!

Love and acceptance of any person has to mean being happy with them the way they are, not the way we wish them to be. And maybe that's the problem for all of us when the holidays come around. We want our relatives to be the picture of contented 'normalcy' and to be kind, generous, and accommodating of all our foibles. Shouldn't that be true also for families with kids with autism? Don't they belong somewhere in that picture? Since we know in advance that the holidays won't be as perfect as they are hyped up to be, perhaps we should re-think having fun on intense family days, such as Thanksgiving. Maybe renting a jump house for all the kids would make more sense than trying to make the kids with autism be something they aren't.

our 40th anniversary

Well, we did it. With a lot of help from a lot of wonderful people, we managed to throw a pretty spectacular shindig at the stunning San Jose City Hall last Saturday night. With visits from a host of VIPs, including our very own Mayor Chuck Reed, and many families and old friends of Morgan Autism Center, the night was indeed special. The art work of the students was, as always, unique and intriguing, and some, magnificent, but the highlight of the evening( for me anyway) was when one of our adult clients, Wanda, and her older sister, Renay, came up to speak. Renay very briefly spoke of how her single mom, Donna, and family of five girls was constantly perplexed by her youngest sister's strange and confusing behavior. When Wanda was five, her mother consulted a psychologist for advice and was told to take her home and let her 'play in the mud.' Not exactly helpful. She found a program for Wanda, but Wanda quickly regressed, until the school asked her mother to keep her home. About that time, Wanda's speech therapist told Wanda's mom that she had seen a new program that looked like it was designed for Wanda. So, Wanda started at Morgan Autism Center when she was 7 years old. Her mother always has said that once she started at MAC, Wanda seemed to feel like 'there was a place in the world for her'. And their family has been very grateful for all the years Wanda has been with us, helping her understand and navigate a very confusing world.

While Renay was speaking at our gala, Wanda stood next to her, beaming and thoroughly enjoying being the under the spotlight. As soon as Renay finished, Wanda asked if she could speak. She took the microphone and with a strong voice told everyone how much she enjoyed the evening and being at Morgan Autism Center. She was so unexpectedly spontaneous it was wonderful to hear, unrehearsed and unpolished, but herself. And that was perfect and a perfect tribute to the many years of the Morgan Autism Center.

the mystery of nuance

Last week, one of our adult clients, Wanda, was very distressed because of her confusion about when and where its okay to touch others, particularly giving hugs. Wanda wants desperately to hug people. Because of her inability to distinguish circumstances of when a hug or arm around another is appropriate, she's been told various things to help her, such as its okay on a special occasion or when you see a friend after a long time. But what constitutes a 'special' occasion?Social occasions are an enigma for her, and it is impossible to explain every situation that might occur, because there will always be an exception to the rule. And the problem is not only when you should offer hugs, but to whom? Why shouldn't you hug everyone on Valentine's Day or Halloween? Those days are 'special' to Wanda. And if Christmas is special, why can't she hug everyone in the program, (remembering that for Wanda, everyone literally means everyone. To the point where she would chase staff members into the parking lot if she did not get an opportunity to hug them. Needless to say, that became a bit too much, in addition to being dangerous. Wanda is so single minded, she was unaware of moving cars, being so intent on catching her yet to be hugged person.) So, we had to modify and try to further explain that one. Now, mind you, this is something that Wanda and I - and others - have talked about before, in fact quite extensively over the years. But it still doesn't make sense to her. Understanding the subtlety of social relationships, the nuance of body language is completely baffling to her.

So, when I met with Wanda last week, she was in tears about yet another situation that was frustratingly mysterious. Every new situation requires explanations and general rules because each one is different and Wanda doesn't generalize from one circumstance to another. Yet, she tries very hard to maintain her composure and very good manners and would be mortified and deeply saddened to find out someone was put off by her behavior. So here she was, in a new situation, this time involving the university where she attends a conversation clinic with other clients in our program. Wanda wants to hug the student interns from the university each time she sees them, which is twice a week before and after the sessions. This was becoming an obsession and making the interns uncomfortable. Once again, we had to go through the explanation of why and when and hope that some part will make sense to her. She had many questions about her observations of others, but why and when were those appropriate and her attempts not. To Wanda, it seems so unfair. She agonizes about her own internal conflict of trying to do the 'right' thing with others, while wishing she could freely act on her own compulsions.

I tried to help her understand the difference between friends and family and people who work with her. I explained that I don't hug staff members very often even on special occasions because we all work together and we see one another daily. Did she get it? Her tears slowly subsided as it seemed we made some progress on her understanding and acceptance of what I said. She was able to give me a summary of what we came to after our long chat. But I know better. I know that someone somewhere will break Wanda's understanding of the rules and hug another someone, and for Wanda, it will be another brand new situation.

Morgan Autism Center's 8th Annual Autism Conference

The Morgan Autism Center's Eighth Annual Conference this last weekend of Friday, September 25, Saturday, September 26, and Monday, September 28 was a resounding success. Friday, we were treated to an electrifying presentation by the brilliant Dr. Sophia Colamarino of Autism Speaks. Dr. Colamarino spoke encouragingly of the latest updates in biomedical research to a spellbound audience. Although she is speaking of very complicated and involved information, Dr. Colamarino presents in such a way that even non-scientific listeners can understand.

Saturday, we had the very engaging and informative Dr. Jed Baker talking about 'No More Meltdowns - Managing Challenging Behavior and Social Skills Training". Dr. Baker's presentation was excellent, entertaining and very well received. In the afternoon, we had an energetic and enthusiastic Raun Kaufman of the Autism Treatment Center of America telling his story as a child diagnosed with autism and recovered through his parents very difficult, long and in the end, successful fight against the diagnosis.

On a separate track, we had medical information available, provided by Dr. Pilar Bernal of the Kaiser Foundation, Dr. Lisa Croen, Senior Research Scientist of Kaiser, Dr. Ann Reynolds Professor of Pediatrics, Director of Child Development Unit at Children's Hospital in Denver, and Dr. Glen Elliott, of Children's Health Council.

We had well attended breakout sessions by Dr. Shannon McCord, expert in augmentative and alternative communication, Nick Boldrey, Education Specialist, with expertise on managing the challenges of adolescence with ASD, and an always informative presentation by Mike Gilfix, regarding Special Needs Trusts. Evaluations indicate a very favorable response to the day.

On Monday, Raun Kaufman did a workshop for the entire day to a standing room only audience of parents and professionals. Everyone left feeling energized and excited by his approach, and though his suggestions is not to replace school work, it was clear to all how his ideas could be infused into already existing programs. Much of his focus was on shifting our cognitive paradigm to acceptance and through acceptance achieving the changes or progress we are hoping for.

As one who has worked in the field of autism, I have made many assumptions about 'group homes' and the impact such a move can have on a family. Twenty years ago, there were not many homes that seemed worthy  of being rated as even moderately good, and most were well below. I remember visiting a home of one of my students along with another teacher where the staff so clearly did not like the student, it was painful to watch. They did very little to hide their feelings even as we observed them. As my co-teacher and I, driving in separate cars silently parted ways, our eyes met in my rear view mirror and we both sadly shook our heads, feeling helpless and frustrated. 

Then too often it seemed that difficult persons with autism were over medicated with powerful drugs that they might not have needed had the staff been better trained to understand their behavior and how to manage it. But things have greatly improved over the last two decades, and expectations of group homes and the quality of care is significantly better, though still not perfect. 

But back to making assumptions. Probably the most common assumption I have had about group home placement is that once a parent places a child, after the initial anxiety, it is followed by relief when a good home has been found. I know from long conversations with parents how they agonize over the decision to even think of placing a child. But the pain of actually making the placement is something to which I have not given enough thought, and must keep in mind in helping parents with a very difficult transition. Recently, one of our adult clients turned 50, and his mother came to our program to help celebrate his birthday. Since I knew he was also being moved to a group home that weekend, I casually asked his mom how she was doing, and was completely surprised when she burst into tears. And yet, how thoughtless of me to think that after 50 years as the sole caretaker, she wouldn't be overwhelmed by this tremendous upheaval in both their lives. I remember a passage in Judy and Sean Barron's book There's a Boy in Here when Judy describes Sean's leaving at age 10 to live in a facility: 

I lay awake most of the night. Images flocked through my mind of Sean lying alone in that strange bed, abandoned, surrounded by strangers. He would be cold. I knew, because he always kicked off his covers, and we always went in and covered him.

I know I have been remiss in addressing and acknowledging the true depth of sadness and pain parents must be feeling in making this decision and then the move itself. How do parents deal with the grief, the guilt, and emptiness of the home? Life really is unfair.

Vaccines, yet and still

Although there have been a multitude of studies that suggest that vaccines are safe, among many parents of children with autism, the jury is still out. And now with the H1N1 virus and concerns of this public health crisis causing a possible pandemic, parents are being advised to add yet another vaccine to the many already given their children.  Parents are encouraged to give their children the flu vaccine at 6 months of age and then annually until five years of age. But do we know yet if these vaccines are safe, let alone effective?

Children are now routinely given 48 doses of 14 vaccines by the time they are in kindergarten, almost double what was given 25 years ago. In fact, newborn babies are given their first vaccine, the Hepatitis B shot while still in the hospital. Do we have any idea if more vaccines are better, safe and effective? Is it possible that this increase in the number of vaccines administered could account for the increase in the diagnosis of autism? 

If I had a young child today, I'm not sure what I would do regarding vaccines. While I understand the needs of the greater public, I also am very suspicious that children with autism have compromised immune systems, which very likely would not be apparent until well after their first birthday and maybe not even until three or four years.  With all the toxins in our environment, it would certainly be close to impossible to pinpoint a particular culprit, not to mention the genetic susceptibility involved. But why not eliminate or reduce the chances of some of the known toxins? Are we trading the chance of some infectious diseases in early childhood for chronic disability for a lifetime with a minority of children?

With the pressures young parents have today to get back into the workplace and the use of daycare, every child is exposed to many more things than children in the past. And so the risks increase that infectious diseases will spread and the need for vaccines remain important. But maybe the double and quadrupling of doses at one time could be eliminated, and the time lines could be reviewed to lessen the impact. Maybe just a shot in the dark, but something should be considered.