My Own Brand of Therapy

I started emailing various instructors at the Connie L. Lurie School of Education in the Spring of 2006... I emailed people in special education, communicative disorders, child and adolescent development, the school of nursing and psychology department. I reached out to anyone that I thought might have an interest, personal or professional, in children with autism and their families. Unfortunately, the response was less than impressive; about ten (10) percent, at best.
  I was fortunate to meet one of my greatest supporters in Dr.Christine Hagie at San Jose State University. Dr. Hagie was a  professor at the University's Connie L. Lurie School of Education. She responded by attending community meetings with me and coming out to the local school district to meet with administrators and other parents. Most importantly, she also helped me establish what had become "my semi-annual therapy session".

San Jose State University

 One day, Dr. Hagie asked me if I would come and speak to her class at SJSU. The class was set up for people who were working on their special education credential. Most of the people in the class were already working on school campuses and pursuing their certification at night. She asked if I would talk with them and give a parent's perspective on this disability. Of course I agreed but asked if I could bring my family and another family and do a "panel" presentation for the class. We would talk about what it was like to live with this disability 24/7, what our expectations are as parents and hear what life is like from the sibling's perspective.
  I asked Jim Fletcher if he and his family would be interested in joining our family in speaking to Chris' class at SJSU. Jim and his wife Donna jumped at the opportunity and we made plans to meet at the campus at 7:00pm. We showed up that Thursday evening and we spoke to a class of 25 teachers, counselors and therapist for 2 hours about autism "from inside". It was an experience I hadn't anticipated; a therapeutic outpouring of emotion, love, comedy, sadness and hope. I found myself being more open and frank about our lives than I had ever been before. I heard things from Kathy that I hadn't heard before. Jim and Donna were fully immersed in the moment; sharing their deepest concerns, their experience with extended family, their personal challenges and successes.
  There are a couple of things that I shared with the class that I thought was important for them to know.
The first thing I said to the class was  I sometime experience guilt for thinking "what about my life? I always wanted children but I did not think that my entire life would be spent caring for another person. What about my dreams and desires?" Sounds terrible to say, therefore many won't say it but it is a real feeling for some and I've acknowledged it. (Doesn't change anything, I'm happy to care for my girl for the rest of my days. She is the light of my life.)
Secondly, the tension that teachers, school districts and administrators feel comes not only from the lack of resources available to parents but the disconnect between the medical community and public schools. When Danielle was born, our doctors said that she would require hours of speech and occupational therapy each week. We were told the school was responsible for providing these much needed services. When I went to the school district looking for these services, I was told that we would get 30 minutes of speech each week and 30 minutes of OT. What? This was a fraction of what the doctor "prescribed". In other words, many times the tension between parents and schools comes form the fact that we are given a "prescription" from our doctors that the schools are not prepared or willing to fill. Imagine another disability where this type of treatment would be acceptable? If your child had epilepsy and your pharmacist (service provider) refused to fill the prescription, how would you react?
  The people in the class sent evaluations back that were pretty remarkable. Many said they had never had the chance to speak to people at that level because of the emotion and tension that inevitably exist between the school and parents. They were also very interested to hear what Danielle's older sister had to say about the affects this disability has had on her. This was the beginning of a semi-annual therapeutic therapy session for me. Each semester, I speak to administrators, counselors, teachers and therapist who are working on their special education credential at San Jose State University. In addition to the therapeutic affects on my life, these presentations help people who care for our loved ones understand the perspective of the family.
  In spite of my positive experience at the School of Education, all was not well at SJSU. I asked if there was any other schools within the university that might be doing anything with parents or students with disabilities. The answer was "no" so I decided not to pursue any further resources at the university. I thought I would focus on following up with Santa Clara and Stanford University. However, within a few months of my last inquiry, I met a psychology student at SJSU that gave me some interesting news; SJSU School of Psychology had an Autism Clinic that was saw almost 300 families each year. I was taken back by this information; how can there be an autism clinic on campus and the school of education not know about it? The two schools are on the same campus, two blocks way from each other.

Santa Clara University

  In defense of the good folks at Lurie School of Education, this problem was not unique to the San Jose State University campus. I had similar experiences at both Stanford and Santa Clara University. People get so caught up in their agenda, with what they need to accomplish, in completing the task at hand, that they are oblivious to what is happening around them. I found this to be especially true on college campuses. I certainly can understand it but this is one issue that I wish would inspire more collaboration and "cross-pollination".

Dad's A Guinea Pig?

When I first decided to put my "plan" into action, I had no idea what I was doing. I had never worked for a non-profit, let alone established one. I didn't have a network. I didn't have any money. I had never developed a board before and I didn't know how to secure my nonprofit status. This is a case where ignorance truly was an asset, I had absolutely no fears or concerns about the journey I was about to start.
  One of the first things I did was start a massive email campaign. I literally sent out thousands of emails to politicians, various support organizations, school districts, friends, activist, you name them, I sent them a message...or two. I was especially persistent in pursuing the colleges in the area. Silicon Valley is home to some of the finest universities in the world. With Santa Clara University, Stanford University and San Jose State University all within 45 minutes of my home, I was sure the resources in this region would be at the head of the pack when it came to this disability. I was to be sadly disappointed.
  I began an email campaign with all three universities; emailing the various schools of education, medicine, psychology, occupation and speech therapy. It was an enlighting experience on many levels. I had no idea how little I knew about how universities operate. Though I attended San Jose State, I never really understood the nature of universities and "isolationism" that is part of the overall culture of these institutions. So my email campaign began, without a clue...
  The main message in my introductory email was, I was a father looking for resources for my family and other families like mine. I asked if the universities were addressing the issue of the unusually high rates of autism in the valley. I asked if they had any classes for teachers or service providers of people with autism. I asked if there was anyone available that I could talk to about creating programs that link university resource directly to the autism community. The response were as different and varied as the schools themselves. These are three very different institutions; Stanford in a private university, Santa Clara is a Jesuit university and San Jose State University is part of the Cal State system.

  I decided that approaching Stanford University should be the priority in my outreach to higher education. The Lucile Packard Children's Hospital at Stanford University is considered to be one of the best children's hospitals in the world. People refer to Stanford University as "The Harvard of the West". Stanford folks refer to Harvard as the "Stanford of the East". The university's overall reputation speaks for itself.

I sent numerous messages to Stanford University; from the school of education, to the medical school and all points between. I started sending emails in April and for the first several months, I got no response. One day in late August, I received an email from the Stanford School of  Medicine's Child and Adolescent Psychiatry. The director of the department emailed me and told me that he would be glad to sit down with me and discuss my goal of creating community based resources for children with autism and their families. Of course, I was thrilled and feeling pretty full of myself at the time.First thing I did,  I contacted my friend and compatriot Jim Fletcher. I asked Jim if he would join me in meeting with the staff at the Stanford School of Medicine. I thought having two parents there would create a better impression when trying to build support.
  When Jim and I arrived, we met Dr. Carl Feinstein in the main lobby. After a brief formal introduction, we were escorted into a room with 9 or 10 other professionals from within the Child and Adolescent Psychiatry Department. There were clinical psychologist, speech therapist, psychiatrist and clinicians from a variety backgrounds and specialties. After round table introductions, I began to talk about my motivation for requesting their assistance and support. I talked about my fortuitous reunion with Fletch. I talked about the diagnostic experience and the need for better communication between public schools and the medical community. I talked about the frustration and hopelessness we feel as parents. Jim Fletcher talked about the struggles he and his wife encounter when trying to balance the recommendation of their doctors with the resources available through public schools and/or those resources allowable given their household budget. He also talked about the pressures and strains that are put upon marriages by this disability. All in all, we talked for about an hour while everyone took notes.
  When the meeting was over, everyone said thank you and offered the obligatory, "if you ever need anything...". Prior to the meeting, Dr. Feinstein said he would be glad to assist us in working to develop some  resources for children and families. This was the "lure" for us; having a distinguished and respected professional to advise us as we grew our project. As we left the meeting, Dr. Feinstein thanked us and invited us to "keep in touch". As soon as I returned home following our meeting, I sent emails to everyone who attended the meeting; thanking them for their time and letting them know that I would be following up with each of them in the near future.
  Unfortunately, there would be no future contact between me, Fletch or the people at the Stanford School of Medicine's Child and Adolescent Psychiatry Department. After many months and dozens of follow up emails without a response, I experienced what alcoholics call "a moment of clarity". Could it be that we presented the perfect case study for the clinicians and doctors at the Child and Adolescent Psychiatry Department? What an opportunity! If your a psychiatrist and you want to know how this disability affects the family, not just the patient, what an opportunity!...and we just walked in the door; no calls, no focus groups, no recruiting. The realization of what happened came to me in waves. After all is said and done, you don't want to believe you were off base in your "assumptions" about someone's desire to help you through a crisis. You want to believe that these folks understood and cared about your concerns. You want to believe that they also see the need for collaboration and resources for families and children, so you dismiss the obvious. The fact is, these folks, like other professionals are focused on their priorities, not ours. Though it may have felt like it, they weren't taking advantage of me and Fletch. They were trying to understand us parents, if only within the context of their interaction with other parents. Even understanding this, the experience left me with that cold metallic clinician's taste in my mouth.

NO BOUNDARIES

Autism Spectrum Disorder knows no boundaries. ASD has no preference for any particular ethnicity. There are no cultural boundaries, religious exemptions or geographical disparities. Economics have no impact on ASD, it affects the rich and the poor.
Swine flu was/is considered a possible pandemic; a worldwide epidemic of infectious disease. What would autism be considered? Obviously, autism is not infectious but it is a worldwide epidemic disability.

The term epidemic doesn't seem to fit this problem. Epidemic sounds too much like an "Outbreak"; an epidemic of teenage pregnancies, an epidemic of car thefts in a given neighborhood. The term epidemic infers that there is an end or solution to this problem on the horizon. This hardly describes a disability that could alter the course of our civilization. Hyperbole? Not, when autism rates are now at 1 in every 88 child births and rising.

A Father's Worst Nightmare

It's been over a year now and I am finally ready to write about it...The call came from Danielle's teacher at the end of the school day in the Fall of 2011. It was the call that I'd hoped would never come. The teacher called to inform me that there had been an "incident of inappropriate touching" at school.
  When I first started this blog, I wrote about my concerns, my fears of raising a daughter with developmental disabilities. How can I protect my daughter from predators in our community? How could a beautiful, warm little girl with a trusting personality and limited verbal skills survive in such a dangerous world? I'm sure these are questions that every loving, responsible father of a child with a cognitive disability ask himself, over and over again. Now, I am faced with the cold reality of my child's victimization.
  Upon hearing the news, I felt my heart sink deep into my chest. Danielle's teacher tried to put my fears at ease by telling me that the "incident" was witnessed by several people and immediately stopped before it went any further. This did nothing to ease my concerns or fears. My first question, obviously, was how was Danielle? Her teacher said that Danielle was OK but may have been more upset by the reaction of the adults who witnessed the "incident". (I called it the "incident" because it is easier than calling it an "assault".) After school was out, Danielle was placed on the bus and sent home as per usual. Of course, I was on the edge of my seat; I could hardly sit still waiting for Danielle's bus to arrive. I wanted to see her, to see how she was, if she was upset, to see if she was scared....I needed to see her.
  When her school bus arrived, I ran outside to meet her. Danielle was unusually quiet but physically fine. I could tell that something upset her but when I asked her how her day went, I got the usual smile followed by silence. This is probably one of the worst aspects of this disability. I know that something terrible happened to her. I know she knows what happened to her was wrong but she couldn't tell me what happened, how it happened, why it happened or what steps were taken immediately after the incident. I was devastated for her, I felt helpless as a father and protector. As bad as things were, they were about to get much worse. Over the next several months, events would unfold that would drive home the harsh reality of how dangerous our world can be.
 After getting Danielle from the school bus and spending a few minutes with her, I had to get more information about what exactly happened to her. I called her teacher and we talked at length about what had happened to Danielle at school that day. She told me that Danielle was preparing to leave for the day and as she was bending over to place something in her backpack, another student grabbed her from behind, began "thrusting his hips" and attempted to reach down her pants. Fortunately, this all happened in the classroom in full view of the teacher, several teachers aides and the entire classroom. I say fortunately because this could have happened on the playground or in a restroom or anyplace out of view from the adults on campus. What if there was no one around to stop this from escalating further? Danielle is the only girl in her class. We're accustom to this because 3 of 4 children with autism are boys. I don't know why this is true but it is a fact and a fact that we deal with each school year. Until now this hadn't been an issue, though I feared one day it might be. This is one of those times I hate being right.
  I made an appointment for me and Kathy to see the teacher and principal the next day. When we arrived for the meeting, they were very apologetic and I felt like they were sensitive to my concerns however...I also recognized that there was a concerted effort to "protect" the child who assaulted Danielle. I really wanted to know which kid was involved and it was clear the school officials were prepared to protect the identity of this child at all cost. I felt I needed to know who this kid was. I see Danielle interacting with her classmates all the time. If there is one student that requires watching or has issues that could prove a threat to Danielle's safety, I should have a right to know about it, shouldn't I? Danielle was assaulted (there's that word) by this kid in front of several witnesses yet Danielle's parents aren't allowed to know the identity of her attacker? The entire situation was surreal. Danielle's class has 7 or 8 kids total. One kid is suspended until the principal and teacher can have a conference with the mother. After taking Danielle to school for a couple of days and seeing the same student conspicuously absent, it was fairly easy to determine who the perpetrator was.
  When we realized who the kid was, we weren't exactly surprised. What was surprising is the way the situation was handled by the school district. For one thing, the documentation of the incident was almost non-existent. I would find out a year later that when Danielle entered middle school, the staff and administrators were unaware of the past problems with her classmate because there was nothing in the files. To make matters worse, Danielle was seated right next to this kid in class the following year and had to endure constant teasing and harassment. It was until the third week of school that we realized they were seated directly next to each other. (Kathy about blew a gasket when she found out!)
  Secondly, there seemed to be no effort to look into this child's behavior beyond the "superficial". It is not natural for an eleven or twelve year old kid to grab another kid, thrust his hips back and forth and attempt to reach down their pants. This isn't a normal part of puberty, this is a learned behavior. I'm no school psychologist but I have been an 11 year old boy before. When I was eleven, I hung around lots of other eleven year old boys and I can't ever remember me or any of the boys I new having the uncontrollable urge to grab a girl and force my hand down her pants. This is a learned behavior and the burning question is where did he learn it?
  Several months went by and Danielle seemed to be fine. We had taken steps to limit Danielle's contact with the other kid. He was moved to the opposite side of the room from Danielle and their interaction was closely monitored. Still, I was uneasy about the situation; I was on edge and would be for the entire remainder of the school year. It was March of 2012 when Sierra Lamar went missing. Sierra was a student at Ann Sobrato High School in Morgan Hill; the same school that Taylor attends. One day, Sierra left her home to catch the school bus on the corner. The same school bus that we often pass as I take Taylor to school in the morning. Sierra never got on the bus that day and she never arrived at school. In the weeks and months that followed, we'd often pass search and rescue personnel on our way to school; Sheriffs Deputies and community volunteers walking side by side through the fields, meadows and pastures searching for clues to Sierra's disappearance. I can't imagine what goes through a parent's mind when their child is missing. By all accounts, Sierra was a beautiful, bright, friendly and articulate young lady. In the end, Sierra was the victim of a predator in our community.
  As I look at this situation, I can't help but think about my Danielle. If Sierra Lamar can become a victim; if this teenager can be taken advantage of and murdered, how do I help Danielle understand the ways of the world? I don't know what the answers are but I do know that there is no time to waste. The world won't wait for me to figure it out.

Natural Learning Concepts

This is a great article and well worth sharing....

- By Jene Aviram

This article is property of and copyright © 2003-2008 Jene Aviram of Natural Learning Concepts.  Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com/

The beginning

Two children have a diagnosis of autism.  One is verbal.  The other is non-verbal.  Both have limited communication skills.  Both have inappropriate play skills.  Both are self directed.  One struggles with transitions while the other struggles with noise sensitivity.  One is more academic while the other is more social.  The children are different in nature but equally impaired by challenges of autism.

 

Five years later one child is in a mainstream setting with very little support.  He has some residual autistic traits which are mostly unnoticeable by the untrained eye.  He has in every sense of the word “recovered” from autism.  The other child is in a special education setting.  Although he was always verbal, maintaining a conversation is practically impossible.  He engages in a variety of self stimulatory behavior, has poor social skills and is impacted by autism in almost every area of his life.

 

What makes the difference?

While there is no accurate information about why some children “recover” and some don’t, there are certainly a lot of theories floating around.  Some say that early verbal skills are predictors of success.  Others say the bigger the sensory challenges, the stronger the autism.  Many believe there is no recovery from autism and that “recovered” cases are simply a misdiagnosis of autism in the first place.

 

What defines “success” or “recovery” from autism? 

Many typical people believe that love, marriage, kids and a good career equals success.  It’s important to note these are personal choices, not success.  There are many people with and without a diagnosis of autism that might choose these goals.  What we’re looking at is the ability to lead an independent life with meaningful relationships regardless of personal choices.  With this in mind, let’s take a look at how you can increase your child’s chance of “success” or “recovery” from autism.

 

1.    Help your child communicate

Learning to communicate is essential for leading an independent life.  Communicate is not the same as “verbal.”  It’s wonderful if your child can talk but if not, seek alternate ways to teach this skill.  Many are afraid to teach sign language as they fear their child will lose motivation to speak.  This is a total misconception.  More often than not, signing speeds up the talking process.  When children learn their needs can be met, the motivation to speak increases.  Once they discover the joy of sharing their interests, there is no turning back.  Enhance verbal skills by teaching appropriate language about movies, school and things they enjoy.  Teach children to enquire about others.  Conversation is a two way exchange about the same topic.  Sometimes children do better with conversation when they equate it to something visual.   Explain that it’s just like tennis.  I hit the ball and you hit it back, I hit the ball and you hit it back.  If I drop the ball (by going off topic) then you win a point.  

 

2.    Sensory challenges

It’s difficult to learn when sensory challenges impede the ability to focus.  People often mistake sensory issues for bad behavior.  Sounds such as a slight hum from electrical equipment might sound unbearably loud or feel painful to someone on the autism spectrum.  If children are unable to express how external factors are making them feel, the result is increased frustration which typically leads to outbursts or tantrums.  A few simple strategies from an experienced Occupational Therapist can make the world of difference.  Consistency brings results.  Encourage your child to practice the OT exercises regularly for maximum benefit.  Time helps too and as your child matures, he will find coping strategies and self regulation tools to cope with sensory overload.

 

3.    Different therapies

ABA therapy!  Verbal Behavior therapy!  RDI!  Son Rise!  Floor Time!  TEACCH!  GFCF Diet!  Enzymes!  Music Therapy!  OT!  PT!  Speech!  Social skills groups!  The list goes on and on.  When a child is diagnosed with autism, parents are in turmoil.  With so many therapies to choose from where do they start?  Which therapy will bring the best result?  What about costs?  It’s overwhelming and confusing for parents who want to make the best decision for their child.  Educate yourself as much as possible by attending seminars, reading books and connecting with parents and professionals.  Therapy is just like learning to swim.  It takes patience and persistence.  If you don’t see steady progress within a few months by all means alter the choice of therapy and/or teaching methods.  If you’re trying supplemental therapies such as vitamins and diet, your child probably won’t be able to express how these things are making him feel.   Always remember that you know your child best.  If something doesn’t seem right, it probably isn’t.  Despite common belief, you are not working against a clock.  You have time to explore various options that you think will help your child learn and grow.  Be kind to yourself.  You are making the best decision you can possibly make with the information and resources at hand. 

 

4.    Emotional Intelligence

Emotional intelligence (EQ) is one of the biggest predictors of success.  You’ve heard the saying “IQ gets you through school but EQ gets you through life.”  The good news is that EQ can easily be learned.  So what exactly is EQ?  It’s the ability to understand your own emotions and those of others, and to act appropriately using these emotions.  It encompasses skills like self control, empathy and cooperation.  There are many ways you can increase EQ.  Teach children how to recognize and manage their emotions such as anger and frustration.  Teach them to express emotions such as joy and appreciation. Help them identify the emotions of others and to act appropriately when others are angry, happy or sad.  By increasing EQ, your child will develop interpersonal skills and develop the confidence for interacting on a personal and at the group level.

 

5.    Self help skills   

Children on the autism spectrum often have poor fine motor skills.  This makes some of the most basic self help skills difficult for children to master.  The desire to impress others is often diminished in a spectrum child and it’s unlikely they will dress independently or button their coat in anticipation of the praise they will receive.  Self help skills are essential for independence.    While it takes time to teach and master these skills, the value is immense.  Your child is not dressing independently if you have to prompt him through it or lay out his clothes first.  Similarly, if you have to put toothpaste on the toothbrush and prepare a rinse cup, your child is only semi-independently brushing his teeth.  Use visual schedules and teach in simple steps until your child is able to complete tasks without any intervention.  An added benefit is that your child will learn responsibility and accountability which do wonders for self esteem. 

6.    There is no time limit

It has been suggested that if children don’t reach certain milestones by the time they are 5 or 10 or even 12, they will never “recover” from autism.  Talking to actual people on the autism spectrum, this couldn’t be further from the truth.  Many adults with autism were essentially non-verbal until they were 10 years old or beyond.  Today they lead productive lives and maintain meaningful relationships.  You never know when that something will “click” or if it will be a gradual and steady change.  For many adults on the spectrum, “recovery” only came about in adulthood.  We do know that people are far more likely to succeed when they have supportive people in their life.   Keep your faith and stand by your child.  You can’t afford to give up.  If you do, your child will feel it and act accordingly.  Your job is to delight in your child’s unique ways and instill the belief that he can achieve anything he sets out to do.  Whatever that is, you’ll be right there supporting him on his journey.

 

In conclusion

Your child is not on the spectrum because you neglected to do forty hours a week of ABA or because you never tried the GFCF diet.  Your child’s current level of functioning does NOT determine his future level of functioning.  It’s simply a guide to help you determine the next step towards a productive, happy life.  Forget about autism for a moment.  Like all kids, your child craves your love and acceptance.  Give it generously and your child will flourish and grow to be the best he can be.