Expression by Lee Studios

Fragile X Syndrome

I am compelled to write about Fragile X because many do not know of it's existence. I work with a wonderful boy William, diagnosed with Fragile X Syndrome. 

 
FXS (Fragile X Syndrome) is a genetic condition that shows typical physical attributes along with behavioral and developmental anomalies in a child. It is also called Martin Bell syndrome or a Marker X syndrome. I was asked, "Why X?" the reason is that one of the genes in the x chromosome is faulty. This genetic condition causes intellectual disability, behavioral and learning challenges and various physical characteristics. No one individual will have all the features of FXS, and some features, such as a long face and macroorchidism, are more common after puberty.

Behavioral characteristics can include ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression.

Each of the males possesses an X and a Y sex chromosome while females contain 2 X chromosomes in all their cells. The specific gene on the X chromosome makes a protein necessary for brain development. If it is faulty there is a deficiency of this protein.

The gene is called the FMR1 gene. The Faulty X chromosome is seen to have a band like constriction near the tip that appears as if the chromosome is broken off at the end. Hense the name, Fraigile X.

Since boys have a single X chromosome, they are more severely affected than girls who may have one normal FMR1 gene on the second healthy X chromosome. Affected girls may have only mild disabilities.

 While individuals with FXS will experience a number of challenges in their lives, given effective interventions and support they can be engaging and productive members of their families, schools, workplaces and communities.

William is very intelligent and uses the visual arts for soothing, and has recently adopted music, he loves to participate in the musical activities.

Those affected by Fragile X are more than their diagnosis. For support and to learn more visit: http://www.thexfamily.org/

Experiences and Strategies: Learned, So Far

    As each day passes, one grows and learns. Quite honestly, change has happened to me in the past few years. Once I enrolled at Prescott College, my world completely changed. As I dove more into the world of applying my love for the arts as a tool for healing and improving the lives of individuals with special needs. Fortunately, the more I explored, the more I am fascinated and the more in love I am of the field of the expressive arts therapy. It allows me to use the knowledge I have, combined with my love for the arts as a tool for teaching children with special needs, mostly those of the autism spectrum. As I venture into this field, learning new strategies for working with children of learning differences and autism, I came across a technique that completely fascinated me: conscious discipline.

    Daily living is also a daily learning, which is why it is said, “Everyday you learn something new.” I personally prefer this quote from Ray LeBlond, (www.quotesea.com) ‘You learn something every day if you pay attention.’  I guess I can say I have been paying attention because when I was hired to work with special needs children, a yearning desire kept building up inside of me and started to nag at me. I commenced my search to find better strategies to help these children to communicate and make a mark in their lives that will stay with them always. I found a field called expressive arts therapy. The more I learned about it, the more I identified and became excited. This triggered my need to go back to school. As long as you are alive, it is never to late to go back to school. In my search I found Prescott College and here I am experiencing life-changing knowledge that has transformed and having me go through a metamorphosis. Forcing me to see life and my future as an expressive arts therapist and visual artist with new eyes, even as I write this blog.

    Years of experience working with children who have a variety of special needs gave me hands-on knowledge. Today as I work, it means more for me to never stop learning to continually strengthen my base of knowledge. I am filling in those missing pieces that helps me become more professional when I work with the children, not only with atypical, but also typical behaviors. Children from three to twenty-five years of age. Some lessons are private, others are classes of up to ten boys of low functioning autism to classes of up to thirty-five high school students in an inclusion class. As I worked with children of the autism spectrum I always wondered why the behavior varied from one child to the next? Whenever I asked for a scientific answer, the reply was always: they are neurologically damaged or their wires are crossed. To learn what is truly happening inside the mind of a child with autism, one must know how the brain works.  Being well-informed is crucial when a professional is dealing with children’s psyche toward their futures.

    The years from two to seven are characterized by cycles of myelination and synapse refinement that lead to new stages of learning, so dynamic shifts in understanding can seem to occur very quickly--although a child may regress until the connections are firm (Healy, 2004). The myeline is an insulating fatty substance that develops in the brain from birth until twenty or thirty years of age. It gradually coats message- sending axons to help them transmit messages more quickly over a gap called a synapse, where the neurotransmitters do their work to complete the connection. Some studies of children with autism or retardation suggest that their brains may be overly cluttered with excessive synapse; for some reason these brains did not “prune” themselves effectively (Healy, 2007). Synaptic connections are strengthened by repeated use; if they fail to connect, they die off. Synapses are “junctions across which neurons communicate” and are essential for “virtually all brain function”—memory, sensory perception, motor coordination, learning (Zoghbi, as cited in Chew, 2007). Zoghbi’s hypothesis rested on research done by a group led by Thomas Bougeron of the Pasteur Institute in Paris that found mutations in proteins called neuroligins in two pairs of Swedish brothers who have autism (Chew, 2007). Neurologins ensure that signal transitions between nerve cells function and are “expressed on the surface of the postsynaptic neuron” (Bougeron, as cite in Chew, 2007)) and bind to neurexins, which are proteins on the presynaptic neuron. It is thought that neuroligins and neurexins together “play key roles in the forming and functioning of synapses” (Bougeron, as cited in Chew, 2007). Bougeron has postulated that there is a “neuroligin autism pathway” in which “abnormalities in any of these dozen or more proteins could predispose their possessors” to autism spectrum disorder (Bourgeon, as cited in Chew, 2007). When sensory integration is not efficient, superfluous sensory information may pass through the gate, creating unnecessary alarm and confusion in other regions of the brain (Smith & Gouze, 2005). By the time a child is five years old, his or her brain will have reached almost ninety percent of its final size, but it will keep developing well into his or her adolescence.

     As an expressive arts therapist that specializes in children, mostly special needs, this information is essential for utmost competence in my labor of love. Knowing that the child’s sensorimotor experiences actually help build his or her brain. With this in mind, I focus on creating and adapting my art activities to help the child become comfortable with the senses. All responses to sensations initiates or strengthens connections in the brain. The amazing aspect of expressive arts therapy is that I get the opportunity to explore with the child which medium best help the child express his or her feelings and or communicate efficiently in a safe and happy manner. In expressive arts therapy a combination of imagery, symbol, storytelling, ritual, music, dance, drama, poetry, movement, or visual arts are used together to give shape and form to human experience, to hold and express emotional and reflective experience, and to expand and deepen personal understanding and meaning (Atkins & Williams, 2007). How does one work with a child, such as Justin, who becomes frantic because he gets some glue on his fingers without being insensitive to his sensory issues? How do you work with children who are nonverbal to hum and start singing and moving to the rhythm when they are screaming and covering their ears? How? The creative spirit, imagination, and the capacity to express oneself in the artistic form are the birthright of all human beings, especially those that who would benefit to the point of transformation into a new, healthier way of existing. In my years of working from school to school observing various strategies. Usually there is a child screaming for dear life during the session if not seclude him or herself to a corner or under a desk. This last year I had the pleasure of working in a class where the students (all with autism of various levels, mostly high functioning) were always smiling including the teachers. A very happy class and a very positive atmosphere.  Next to this class is another with the same level of function with a few children with challenging classroom behaviors. I became fascinated with their techniques because in their class was a twin child whose identical sibling is also my student next door. In the beginning of the year they seemed similar in attitude; worried, not sure of one self, and a lot of self pitty. Now, I observed the twin in the classroom mentioned above, his self-esteem soared incredible heights while is brother remained the same. What are these teachers doing right? I had the pleasure of interviewing Trujillo of ABC Schoolhouse (T. Trujillo, personal communication April 4, 2012). I explained that I observed a change in the behavior of twins during this school year. Also Tommy, who was transferred over to Trujillo’s class. His attitude changed for the absolute positive. He does not seem to be worried and inhibited as previously in his prior class.

    Her strategy? Conscious discipline. A comprehensive self-regulation program that integrates social-emotional learning and discipline. Conscious Discipline empowers adults to consciously respond to daily conflict, transforming it into an opportunity to teach critical life skills to children by using a multidisciplinary approach to address behavior to understand the internal brain-body states that are most likely to produce certain behaviors in children and in ourselves. With this awareness, the teacher learn to consciously manage his or her own thoughts and emotions so he or she can help children learn to do the same. Research, as well as life experience, tells people that the internal emotional states dictate behavior. When people feel grumpy, they tend to become easily frustrated and curt with others. When humans feel grateful, they tend to be generous and thoughtful. When parents feel upset at their children, they might behave, discipline, and speak much like their parents did when upset. The conscious discipline brain state model helps teachers and parents understand how all this happens and how they can change children’s behavior. Conscious discipline empowers adults to be conscious of brain-body states in oneself and children. It then provides caregivers with the practical skills they need to manage their thoughts, feeling and actions. With this ability to self-regulate, teachers are then able to teach children to do the same. By doing this, parents help children who are physically aggressive (survival state) or verbally aggressive (emotional state) become more integrated so they can learn and use problem-solving skills (executive state) (“Conscious Discipline Brain State Model,” 2012). Developing discipline within children rather than applying discipline to them. Conscious discipline was not designed to be applied for children with autism. Trujillo and Rojas, the teacher’s assistant, who also took an intensive week long course with her, have adapted the techniques for their special needs children. I can happily say that I see the results and they are very positive. Every morning they dedicate a half hour in breathing exercises to relieve any stress brought from home and the children start the day relaxed and alert.

    The children do these exercises every day over and over again, “the purpose of it is so that they have a choice,” says Trujillo (T. Trujillo, personal communication April 4, 2012). She recounted how one of the children always goes against what is asked of her. When the child gets out of line, she is asked, “Which breathing exercise would you like to do?” The child does the breathing exercise she likes. These exercises are applied for the whole class when the teacher’s trained eye sees that they need it. When a child cannot control her or his behavior within the classroom, he or she is not hearing the teacher.Trujillo and Rojas have created a safe place for the child to lie down and collect him or herself for five minutes. They created this space under a table by a wall with a cloth that serves as a door. Under the table there is a large cushiony floor, a pillow and a blanket. When the child comes out of this safe space, he or she is asked, “What could you have done differently?” Conscious discipline focuses on how to make things better next time, not on consequences. Unfortunately, there is a need for consequences, in special education, it is mostly, the safe space, or calling mom. But never angrily repeating the wrong action, but allowing the child to use his or her problem solving skills on how to react next time the situation arises.

     I have found that the more I read, the more I use my creative juices for creating activities and adapting strategies according to the children’s functionality.  As I learn, I find I must learn more, my hunger to be a competent professional grows each day. There are so many children with so many learning differences, all equally needing to express themselves, not just to better communicate with others, but to learn to be self-aware of their abilities. Applying conscious discipline to teach children with special needs using the arts is my new goal! Since the interview, I am applying more positive reinforcement, and not mentioning the wrong act, but asking, “What could we have done differently so your smile could have stayed on that beautiful face longer?”

    While each child is “pre-wired” with certain traits, temperament and abilities, it’s the interaction with their environment, especially their parents, which ultimately determines how these characteristics are manifested as they grow and develop into competent adults. Development is the result of “transactions” between the child and his or her environment.  Each transaction results in new learning which results in the development of skills and traits.  The right frequency, quality and intensity of interactions between children and their environment will result in each child reaching his or her full potential (“Child Development Institute,” 2012). Being able to adapt to a child’s current ability is important for motivating the child to explore and have enough confidence to try new things. Each child with special needs, after mastering a new challenge like Diego who does not like having his hands dirty with paint, does not wash, complain or reacts aggressively, must know that his actions merits recognition. The teacher must ensure he feels proud of himself. A happy child learns more and will yearn to for more knowledge, because it has become fun.
 
    In conclusion, study shows that seventy percent of highly creative children were not identified as “gifted” by IQ scores but instead were labeled as “learning disabled.” All children are potentially gifted and creative in delightfully individual ways. It is up to the parents and teachers to uncover those abilities and help the child make the most of it (Healy, 2004). When I work with the children, my main focus is to tap into that medium that allows them to express themselves. It is an exciting adventure, not only for me but for the student, who is exploring a new way of creating. It is fascinating when that tool is discovered. To see how the student’s attitude changes.  I encourage new experiences to keep the fire of creativity blazing. The student’s focal point now is the new found ability. When a teacher applies the newly found strategies of conscious discipline, the knowledge of  how fascinating the brain works, and the arts, the only question the student should be asking is, “What else can I do?”

                                                               References

Atkins, S & Williams L.D. (2007). Expressive Arts Therapy: Background. Sourcebook in                 Expressive Arts Therapy. Boone NC: Parkway Publishers. Part 1, chapter 1, page 1

Chew, K (2007). Autism’s cause at the synapse? Science Magazine, Retrieved from    archive.blisstree.com/feel/autisms-cause-at-the-synapse/

Child Development Institute (2012). Retrived April 29, 2012 from childdevelopmentinfo.com

Healy, J.M. (2004). Your Child’s Growing Mind, Chapter 1, Opening the black box, pages 19-20,     Chapter 3, How do children think? Page 56, Chapter 12, The toolshed Muse, page 352. New York, NY: Broadway Books

Leyland, R. (2006) Retrieved April 29, 2012 from http://www.homeschooldiner.com/    at_the_diner/deep_thoughts_for_homeschoolers.html

Loving Guidance (2012). Conscious Discipline Brain State Model. Retrieved April 29, 2012     from http://consciousdiscipline.com/about/brain_state_model.asp

Smith, K.A. & Gouze, K.R. (2005). Thinking sensibly: no two brains are alike. The Sensory     Sensitive Child, Chapter 5, pages 102-103. New York, NY: Harper Collins Publishers

Why the Arts Benefit All Children

   Luckily for all of us, the arts benefits everyone, not only children; every age, race and spiritual beliefs. It opens doors to new worlds, new heights, new ways of communication and expression. Art functions as an alternative expression and communicative means, existing alongside language. I have the blessing of seeing how the spirit of a child rises when that child sees how he or she ‘did it by him or herself,’ everyday. Self-esteem comes from recognizing and using one's own strengths to succeed, every person has the capability to see that for themselves. 

   To me a successful project is the one when the child runs off overwhelmingly happy to show his or her accomplishment. Well deserved are the praises, because the child had to resolve and figure out how to achieve the look and feel assigned in the beginning. An art project is a problem to be solved from the conception in the mind. Choices are always available like deciding what color, what goes where and how? Promoting the ability to make choices. Individual responsibility is built through starting and finishing a project. 

    Nevertheless, it is healthy to express oneself. I focus on the process, not the product. During the process I lead the child into that special place all artists go when they are inspired. I believe that in this place one finds solutions and heals. I believe that it is here that my students with autism discover that they have a valuable tool in their hands for self-awareness and self-expression. Here they can express themselves without consequence. I teach them that in art, they are always right. Mind you, this does not mean there is no structure and rules to follow, but freedom of expression is vital. 
    In conclusion, the arts are so powerful, that used with consistency and appropriately, it is a tool that will stay with the children all their days. A tool that is constantly promoting problem solving skills and self-expression. Freedom to self-express allows for focus as it builds self-esteem. The arts requires full brain collaboration improving children’s development, and hence enriching the lives of all children, crucial for those with disabilities and their families.

 

   "If students are to fully embrace the rich and diverse cultures of the world; if they are to live up to their full cognitive potential; if they are to be prepared for living and working in a technologically driven world; and if they are to live a life alive and wide-awake to the possibilities yet to come, this promise of the arts as basic education must be realized."

                                                   - Dee Dickinson

Be sensitive to the child's world

A full body self portrait

I was always told that I am overly sensitive to others feelings. I seem to easily place myself in others shoes. It turns out that God was training me on how to control such feelings and how to use it to comfort others. Today its the key when I work with the children, and its my advise to all....Be sensitive to the child's world.
Building a relationship begins with what the child sees and perceives and is dependent on the adult's sensitivity to the child's experiencing moment. Making contact with the child means responding with gentleness, kindness, and softness to the child's communication of self. This applies to all children, typical and atypical.
Once I've entered a child's world, with a passion, with a courage to pursue in depth, with determination to stay on the path with the child no matter what.... I can enjoy, embrace and encourage all the accomplishments, every single one. See that flame in their eyes light up with self-esteem and self-awareness, fills my spirit with more energy and passion for watching how this child flourishes and grows.
Being sensitive to me is being very aware and very loving in every action and reaction of that child and responding with pure love that has a purpose.