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February 21, 2018October 2, 2018

The Courage to Speak Out

During a time in which we are experiencing a surge of political correctness, speaking honestly about topics deemed taboo requires a certain level of bravery. Gil Epstein, 13, chose to take that risk when he openly discussed the constant challenges he faces as the sibling of a disabled older sister Sari. The arena he chose to share a raw account of his life was not during a quiet conversation with his family but as the keynote speaker for a recent JAFCO fundraising event.

Gil credits his parents Eric and Erika for his ability to speak freely saying that he could always express himself without judgment. Eric said that for better or worse they never kept secrets from Gil and they were always honest about his sister’s condition. Her illness included numerous surgeries and is accompanied by frequent outbursts. Gil said that he didn’t want to “sugarcoat” what life is like living with a disabled sibling and that he felt that the message might be better received coming from a teenager. He shares how hard it is not to have time alone with his parents and events that most of us take for granted, such as an evening out for a dinner and a movie, is uncertain because of the anticipation of an outburst from Sari.

Eric describes life as “always waiting for the other shoe to drop.” He spoke about how Gil’s friendships suffer because of not wanting to being associated with his sister for fear of ridicule. Eric said on a rare occasion he asks Gil to meet his sister at the school bus, but he refuses and locks himself in his room. Gil admits that no one actually does make fun of him and when pressed about how he might be able to confront this situation in a different manner he responds, “this is something I will continue to have to work on.”

Trying to help Gil cope with a situation that he considers unfair, the Epstein’s brought Gil to JAFCO’s SibShop to meet other children whose lives were similar to his. When it came time for his bar Mitzvah, Gil chose SibShop as his Mitzvah project and was asked to be a leader for the younger children. His experiences with the group would be reflected through some of his Torah readings, most notably the story of Samson who derived strength from his hair, but through fate it was cut off.

Gil questions his fate of having a disabled sister but has come to recognize that good still comes from this. “Sari will never judge anyone,” Gil said. “She will be spared some of the negative emotions and experiences others have because she doesn’t know how to feel it.”

Sari did not attend the bar Mitzvah. “It was one of the most important days of my life and I just didn’t want her there,” Gil said. He didn’t want to deal with the worry of what might happen. He was grateful for this rare occasion when for a change it was all about him. There will probably be more public speaking in Gil’s future, as he and his parents believe it is important to share their experiences with others in the same situation. Both Eric and Erika have chosen to change professions and become mental health professionals in order to practice together counseling other couples on dealing with the challenges they face with a disabled child.

Gil was grateful for the opportunity to raise awareness not only concerning his life but the work done by organizations that assist disabled children and their families as JAFCO does. Because of the Children’s Ability Center, which provides an array of services including art, fitness, computers, and overnight stays Gil and his family was able to go on a cruise together. The Epstein’s hopes that their honesty and openness about their life will continue to help others who share this challenging journey.

July 7, 2017January 21, 2019

Pediatric Occupational Therapy: Transitioning Children from Being Isolated to Being Included

“Nobody is superior, nobody is inferior, but nobody is equal either. People are simply unique. You are you, I am I.” Osho

Pediatric Occupational Therapists are life builders for children whose lives have been afflicted by disability, especially those with autism and cerebral palsy. OTs help these individuals to be free of their isolation, and help them to share their abilities with others. OTs do not attempt to make clients like everyone else. We embrace their strengths, and work on the areas that are weakened which affect their everyday functioning. If a child has difficulty controlling his or her self stimulating behaviors, we teach him or her how to satisfy that crave in supplementary ways so that it does not affect his or her functioning and those around them. We want him or her to share his or her uniqueness.

If a child with cerebral palsy demonstrates impairments with his or her motor control and coordination skills, which affect his or her activities of daily living including dressing, bathing, and social interaction skills, occupational therapist help remediate deficits and train clients and caregivers on compensatory techniques as needed to lead fulfilling lives.

Various children with autism may miss sensory information from the environment that provides signals about what is going on in their surroundings and may be referred to as having poor registration. The brain may not be getting what it needs to produce appropriate responses. Other children may be referred to as having “seeking behavior.” These individuals are characteristically active and continuously engaged in their environments. They add sensory input to every experience in daily life. They may seem impulsive and the consideration for safety when playing may be absent. Some children with autism may display hypersensitivity to sounds, sights, smells, tastes, and textures. These children may have sensitivity behavior. They have overreactive neural systems that make them aware of every stimulus that becomes available, and do not have the appropriate ability to adjust to these stimuli. Children may also present as having avoiding behavior, which represent those who may engage in disruptive behaviors, especially in situations where they know they are having difficulty. They avoid circumstances by either withdrawing or participating in emotional outbursts that enable them to get out of the situation. The child may appear stubborn and controlling and prefer routines without any sudden changes.

The child is creating a state to limit sensory input to those events that are known and therefore easy for the nervous system to interpret. There is not a cookie-cutter treatment plan for these exceptional children. OTs give the children and caregivers individualized recipes (treatment plans) called a sensory diet with ingredients (tools) to help the child regulate his or her sensory system for success at home, school, and in the community. Children with cerebral palsy characteristically demonstrate deficits with reflex, body movement, muscle tone, balance, posture, muscle coordination, and receiving and responding to information through the senses. These complications can considerably impair a child’s ability to successfully take part in daily living activities including, dressing, feeding, sitting, standing, socializing, and more. These limitations can lead to isolation.

Occupational therapists encompass the skills necessary to improve their posture, reduce muscle tone, and improve their range of motion. They will improve a child’s self-care skills, visual motor skills, handwriting skills, and the ability to navigate his environment. These skills are imperative to improve a child’s functional independence to replace isolation into inclusion. But treatment does not end in the therapy clinic. A comprehensive home exercise and activities program and family education are vital to this process. OTs are knowledgeable in many areas in pediatric care. The focus is on improving a child’s functional independence. Through individualized treatment strategies and taking a family centered approach, limitations can be altered into great expectations.

August 20, 2016July 3, 2019

Starting off Right: Your Child’s First-Ever Day of School

startingschool

Few children today enter first grade or kindergarten with no prior school experience. The majority have either been enrolled in pre-school or they have attended VPK, the free program that prepares children for kindergarten. These programs help make a child’s first day of real school easier. In times past, kindergarten was often a child’s first experience with school.

There is an old joke about the Jewish mother who prepares her son for his first day of school, saying, “Now, bubeleh, go to school and make me proud. You’re a big boy, bubeleh, and you’re going to learn a lot in school. Oooh—here comes the bus. Give me a kiss, bubeleh, and have a wonderful time.” As the school bus pulled up to the bus stop that afternoon, the mother waited eagerly to hear about her son’s first day in the hallowed halls of education. Giving him a big kiss as he stepped off the bus, the mother said, “So what did you learn on your first day of school, bubeleh?” He replied, “I learned that my name isn’t bubeleh. It’s Irving.”

Funny as that joke is, it does contain a lesson: Make sure your child knows what their real first name is. Although many schools today are lenient about the use of nicknames, there are still some that demand that “Pat” answer to “Patrick” or “Patricia,” as the case may be. At the very least, he or she should be aware of what their true first name is. This is even truer if the nickname doesn’t derive from the first name, as in the case of kids who are used to answering to “Red” or “Shorty.”

Although you may be feeling nervous, wondering if your child will make friends easily, if he or she will be accepted by their peers, and other worries, former elementary school teacher Lenna Buissink urges that you try not to communicate those feelings to your child. Children can sense when their parents are nervous. A child who is facing the first day of school with equanimity can develop stage fright if he or she picks up on the fact that you are nervous about this impending event.

Be sure your child has all the recommended supplies. Don’t let them be the only one without a set of crayons, pencils, or whatever else the school requires.

Remind him or her that entering kindergarten is an important step in growing up—that he or she is a big kid now. Since kids take the growing-up process very seriously, capitalize on that and help them to feel proud of being big enough to go to school.

Buissink advises that if the child is nervous, you should honor that feeling. Don’t belittle or disrespect the child’s feelings by saying, “Don’t be nervous,” or “Don’t be silly. There’s nothing to be nervous about.” Instead, say, “Okay, what are you nervous about? Let’s talk about it.” Encourage your child to open up about his or her concerns, and then calmly and positively respond to them.

Even if your child has gone to pre-school or VPK, he or she may be nervous about attending real school. Don’t assume a child will be at ease because of prior school experience. Maybe he will…but maybe she won’t.

While you don’t want to send your child off to school with a teddy bear or security blanket, if there is a small trinket that is meaningful and comforting and will fit in the backpack, let the child bring it to school.

Buissink also advises that you stress how wonderful the teacher is likely to be, and also suggests trying to find something out about the teacher beforehand, then sharing that information with your child. A tidbit like, “Did you know Ms. Jones has a boy your age?” can strike a spark of kindred feeling in the child that can make all the difference between starting school with butterflies in the stomach or with a feeling of confidence and excited anticipation.

by Cynthia MacGregor