We found the
with the SRP
Acepting my child
Yochan (Yoshiko) was diagnosed as autistic at the age of 1 year 8 months old. Since then, we have tried sensorial behavior therapy, parts of the TEACH therapy program, and working with Kumon for around 8 years. We have also tried so many other things to make Yochan be as independentas possible. We focused on daily skills, and academics, but the social part of her was never considered a priority of our therapy and was put as a secondary concern.
As the time passed, Yochan had developed most of the basic skills (washing, eating, dressing herself). However, the more we tired to teach other skills we thought at that moment were important for her, the more she developed into an aggressive young teenager. This started when she entered Junior High School. At this point we asked the teachers of the school to work on academics skills and communication. The school made an almost perfect curriculum for her, but at the same time it was too hard for Yochan to achieve. As a result, her frustration developed into aggressive behaviors (biting and pinching herself and others, hitting her head, hitting things around) that increased as time passed. Aggressive behaviors came simultaneously with other inappropriate behaviors in order to protest, whining, tantruming, playing with saliva, and washing her foot for long periods of time. She was completely isolated in her own world, making minimum eye contact, and showing no interest in people around except when she needed something from them. Her happy time was and still is when she eats because she is a food lover.
As days passed, all these negative behaviors increased in amount and duration. When Yochan was 16, her younger sister, my husband and I were having the most difficult moments in our lives. At this point, we had started to use medication in order to ease these symptoms. Although Yochan was prescribed PMS syndrom’s analgesics (we thought her panicking was the result of PMS syndrom) and tranquilizer Rispaldar, she continued to have long tantrums everyday, couldn’t sleep most nights (we neither), kept injuring herself and others. Because all of that, we were at our limit. We all were very upset because it seemed that we would never find an effective way to handle all of these problems.
WHAT IS AUTISM？
It is a relational, interactional disorder. At its core, Autism is a neurological challenge where children have difficulty relating and connecting to those around them. Most of their so-called behavioral challenges stem from this relational deficit.
A diagnosis of Autism is given when three specific areas of development are significantly affected. These three areas are known as the “triad of impairments”. They are: social development, communication and repetitious behaviors and restricted interests (American Psychological Association, 1994, World Health Organizations, 1994). More specifically, people with Autism tend to be challenged by the ability to understand another’s perspective or even attribute mental states to other people (often knows as mind-blindness or lack of Theory of Mind) and may display a lack of empathy. Communication challenges may range from no use of language to the lack of ability to have fluid, creative conversations. Repetitious behaviors (often referred to as “stims”) may be patterns of motor movements (fine or gross motor), repeated verbal lines (often called “scripting”) or involve unusual sensory stimulations (e.g. spinning or dropping objects or watching movement). Other people with Autism may have more usual interests but have an unusually restricted range of interests or become obsessive about a few interests. These developmental differences tend to become apparent between 18 and 36 months of age (see First Signs of Autism).
People with Autism can be characterized not only by these areas of challenge but also by significant areas of strength. Many people with Autism are superior at what is known as systemizing, that is, “the drive to analyze objects and events, to understand their structure and predict their future behavior” (Baron-Cohen, 2005, pp. 110). This may be exhibited as an intense interest in train time-tables, for example, or an almost intuitive sense of how to program a computer. Other cognitive patterns have emerged through research. For example, people with Autism tend to show an above-average awareness of details and ability to segment stimuli (e.g. Happe, 1999). Some people with Autism have superior abilities in discrete areas such as mathematics, music or art (often referred to as islets of ability).
Autism is a spectrum disorder, now more commonly referred to as Autism Spectrum Disorder (ASD). This means there is a wide variety of severity of Autism. Some people with ASD are highly verbal and conversational while others may not use any verbal forms of communication. Similarly, some people with ASD are very withdrawn from all forms of social interaction while others have families and jobs. People with ASD test as having a wide range of IQs (see The Autism Spectrum).
ASD has traditionally been thought of as a psychological or behavioral disorder. Some early theorists assumed it to be caused by emotionally withdrawn parenting (i.e. “refrigerator mothers” Bettelheim, 1967). This idea was long ago discredited. A diagnosis of ASD is still made on the basis of behavioral observation. There is currently no genetic, chemical or neurological test for Autism although all of these things have been shown to be instrumental in the etiology of the disorder (see Possible Causes). There is now a lot of evidence that ASD is primarily a neurobiological disorder. That is, that the characteristic social, communicative and repetitious behaviors from which the disorder is diagnosed are the developmental consequences of a brain that is fundamentally wired and organized differently (e.g. Baron-Cohen, 2005). To date however, there is not clear, agreed-upon cause of Autism. Consequently approaches to treatment can vary widely (see Autism Treatment).
Yochan was almost finished with her days as a student and the idea of letting her go to some institution after that without doing anything to improve her present condition was something that didn’t fit well with the future we wanted for her.
We looked within Japan and abroad with no luck. After a search on the Internet we found avery special program for children on the spectrum. We were very surprised by the amount of information they had on their Home Page. The program’s philosophy matched perfectly with what we were always thinking and wanting for Yochan. This was our first encounter with the SONRISE PROGRAM (SRP).
WHY WE CHOOSE TO WORK WITH THIS PROGRAM?
Unlike other programs we had worked with, this program is focused on the socialization of children (they consider socialization as the biggest challenge of any childwith autism). Of course, they don’t say that academics and daily life skills are not important, but instead, the more we work in the area of social development, the more the children will be encouraged to interact with other people and as a result be motivated to learn all of these skills by themselves. Our daughter had learned to read and write on a 2nd grade level. Now, we think that she learned because she had to, and because of that she didn’t generalize the concepts and was never motivated to use these skills in a practical way. As she grew up, it became more and more difficult for her to interact with other children the same age without disabilities. We noticed that Yochan was more interested in interacting with young people. So, the idea to focus on her social skills met all our expectations.
The other important reason we chose the Son Rise Program was because they believe that it’s never too late to begin working with children on the Spectrum. Looking for help within Japan was unsuccessful because of Yochan’s advanced age and also because of her severe challenges at that moment. The SRP advisor who contacted us talked about so many cases like ours that have greatly improved following the SRP philosophy. The advisor didn’t assure us that our daughter would recover 100% from autism but, the program would give us the tools necessary to work with our daughter with a loving and non judgmental attitude. At the beginning this philosophy sounded strange to us. We were looking for a therapy that could help our daughter to improve her behavioral challenges and they were talking about “our attitude?”. We didn’t think so much about it at that moment. We like the idea of being loving and non judgmental and also being taught how to recognize and utilize Yochan’s own interests, motivations and particular learning style.
After finding the Son Rise Program at the end of October 2013 on the internet, we saw almost all the video clips they had in their Home Page and read most of the information they published. They talked about their work with Raun (their autistic child –at that moment- and the first Son Rise recovered child), about the principles of the program, the techniques and how to start working with your child. After immersing ourselves with allavailable information about the Son Rise Program, we started to join Yochan for 2 to 3 hours everyday. To our surprise, after a week, Yochan’s tantrums started to decrease, she would fall asleep earlier and sleep very deeply, and her aggressive behaviors become milder. We couldn’t believe it! We decided then to fully commit ourselves to try this program. We immediately contacted the Son Rise center to get more information.
After talking 2 or 3 times with our counselor, Jan-Marie, we wanted to get started as soon as possible. We didn’t know how to, where to begin, so initially we asked if we could have the Intensive one week program. That would mean that we had to go to the Autism Treatment Center of America in Sheffield, Massachusetts with our daughter and work all together for 5 days, 8 hours a day. Because Yochan was having very aggressive behaviors at that time, they suggested that we (the parents) go first to the Start-Up program (also one week program) and with that knowledge work with Yochan for a while. Instead, they suggested to send one Senior Teacher to Japan (Outreach) to work with us at home. By the end of December of 2013 we had stopped all of Yochan’s medication.
My husband and I participated in the Start-Up Program in mid February 2014. It was a marvelous week where we shared the same fears, worries, experiences, and expectations about our children with other 60 people from around the world. This was a week where in someway we could understand, from our daughter’s point of view, some of the challenges she was having as a result of being autistic. We got very energized and decided to work more with our daughter and felt very blessed listening to other parents share the same feelings and wishes for their children.
In December of 2016 we had a new start, 5 volunteers came to work with us. Since we have started to work with this amazing group the dynamics of the program has changed dramatically. We have regular meetings, I do feedback and support continuously so the members can participate in their sessions with great energy and good attitude.
Since we found the Son-Rise Program almost 5 years have passed. Looking back to where we started, we can see big changes happened to her. This is a roughly resume of them.
1)When the volunteers started to work with Yochan there was no communication or interaction at all. Now Yochan is more open to interact and have fun with them.
2) She is using verbal and physical communication in order to express her desires whereas in the past she would cry or have tantrums.
3) She is changing from echolalia to answering to what we ask her.
4) At the beginning she used to use one word to express her desires or requests, now she can use 3 words sentences to asks for what she wants.
5) Her eye contact is amazing! It is more natural, spontaneous and it is so profound! Sometimes she stares at us for a very long time like trying to speak through her eyes.
6) Her understanding of spoken language has increased tremendously.
7) She now enjoys people's company. Now after her sessions with the volunteers finish, she likes to stay and drink tea with us and while listening our conversations she reacts appropriately laughing or having facial expressions in the very precise moments.
8) Her ability to concentrate and think/solve when she is doing some activities (typing, complex puzzles or just listening when we read to her) has dramatically increased.
9) She volunteers to do housework and does them well and pays attention to details.
10) She used to cry every day when she woke up or before she went to bed. Now we can say for sure it is almost gone. Amazingly even she has to ride a workplace bus at 7am she is now getting there some minutes ahead the bus leaves.
In our work with Yochan, it was not guidelines of how to do this or that, but understanding Yochan’s position and discover the impact of our responses to her. The most important thing was that after we discovered the reasons for our intolerance about any of these behaviors we decided to change our feelings and emotions toward them in order to help Yochan from a very loving and caring position. We decided to create trust between us, so we started our work of letting go of judgments that didn’t help us in creating this beautiful relationship with our daughter. I always remember one phrase Gerd (until early 2018 he was a Senior Teacher of the Son-Rise Program, now he is the director of Global Autism Solutions) said to us : “Why would Yochan want to be friend of someone who is all the time judging her?”. We have always said that we have to accept the reality, accept our daughter as she is, and we say, yes we love our daughter, we are accepting her… but we say at the same time, I want her to do this, I don’t like when she does this or that. It let me think of what ACCEPT means. It doesn’t mean that we don’t want Yochan to change and improve but, instead how can we help her if we are thinking what she is doing now is all wrong?
In one of the lectures that Bears talked about autism, he presented a SRP Mom’s comment about this point as follow : “I was in love with the child I wanted my son to be, I was in love with the child I fantasized he would become, I really wasn’t in touch with or in contact with the little person he actually was, and somehow now I want to be more with him, not as he might become, not as he could develop into but who he is at this very moment with all the different things that he does”.
Copyright© 2019 Colorful Beads Embrace Autism Japan. All Rights Reserved