Language Center “365” Club News, March 2012

RiteCare: Scottish Rite Masons Helping Children CommunicateMy Brothers, the 2012 Language Center “365” Club was off to a good start. We had five members that joined early in January. They are Neil Simmons, Peter Jantz, Ray Godeke, Bob McNamara and Don Tapia. This represents 20% of our goal of twenty-five members for 2012. However, since that time we have not had any additional members join. My Brothers, see if you can find it in your heart to join this important support group.

The work that the Center does with young children is extremely important in their development as they learn to communicate and speak properly. That is a skill that most of us take for granted, but think for a minute if you had trouble communicating and speaking. It would make your life a lot harder. These are the skills that the Center imparts to their clients.

This is our main Santa Ana Scottish Rite charity. Let’s support it! And remember it is tax deductible. Membership is $365 per year. Checks should be made out to California Scottish Rite Foundation (CSRF) with a memo Childhood Language Center of Santa Ana (CLC of SA). Thank you, my Brothers, for supporting this worthy cause.

Bob McNamara, 32⁰ KCCH
Treasurer, CLC of SA

Language Center News, February 2012

RiteCare: Scottish Rite Masons Helping Children Communicate[dropcap]C[/dropcap]ome over and lend a hand. Some help is badly needed at the Center. Answer-ing phone calls, taking messages, and greeting parents who stop by for infor-mation would be a wonderful help and keep therapy from being interrupted. There are also those “courtesy/reminder calls” to be made each day. So, if you have a spare hour or so on Tues., Wed., or Thurs. – come by the Language Cen-ter anytime between 2:30 and 5:30 p.m.

Thank you for your support for your community’s children!

Language Center 365 Club News, February 2012

RiteCare: Scottish Rite Masons Helping Children CommunicateMy Brothers, the 2012 Language Center “365” Club is off to a good start. We have five members that have joined. They are Neil Simmons, Peter Jantz, Ray Godeke, Bob McNamara and Don Tapia. This represents 20% of our goal of twenty-five members for 2012.

The work that the Center does with young children is extremely important in their development as they learn to communicate and speak properly. That is a skill that most of us take for granted, but think for a minute if you had trouble communicating and speaking. It would make your life a lot harder. These are the skills that the Center imparts to their clients.

This is our main Santa Ana Scottish Rite charity. Let’s support it! And remember it is tax deductible. Membership is $365 per year. Checks should be made out to California Scottish Rite Foundation (CSRF) with a memo Childhood Language Center of Santa Ana (CLC of SA). Thank you, my Brothers, for supporting this wor-thy cause.

Bob McNamara, 32⁰ KCCH

Treasurer, CLC of SA

Simon’s Story

Simon Kissam
Simon Kissam received his nutrition for months through a feed tube after surgery to correct a serious intestinal problem. Then he needed the help of a Speech Language Pathologist to learn how to eat.

For about seven years now, I have worked to help organize and plan the Scottish Rite’s biennial RiteCare conference. “What’s that?” You might ask. Well, the clinicians and administrators that work at RiteCare clinics and programs attend this conference and share the latest educational information on speech, language, literacy, and related programs. Some earn continuing education credits, and all enjoy networking with fellow colleagues who work for the Scottish Rite across the country.

It wasn’t until last year, when my son Simon was born, that I ever thought about what a speech language pathologist (SLP) even did.

Let me tell you about Simon. He was born in August 2010, and before even going home, he was airlifted by helicopter to Children’s National Medical Center in Washington, D.C. Something was terribly wrong. We knew it because the nurses were whispering in the hall and then coming in and acting like it was no big deal. Our pediatrician told that it was likely that Simon just had an intestinal blockage, but he was also honest with us and said that there might be other complications. So the transport team came and packed tiny Simon into a huge life support system and took him — without us! — to our nation’s capital.

Simon

On the ninth day of his life, Simon faced surgery to deal with major intestinal complications caused by the rare Hirschsprung's Disease.

At Children’s National, Simon was admitted to the Neonatal Intensive Care Unit (NICU), which is Level IIIC, the highest level of care for a newborn in the Washington, D.C. area. For the first week of his life, in order to hold my son, I had to maneuver around wires and tubes and lines. But, I held him as often as I could. The scariest moment arrived on Day of Life 9 (as they say in the NICU), when Simon was going in for a major surgery. His surgery was supposed to last a couple of hours. So, we waited. And waited.

Other parents were called back to the recovery room to meet their kids. And we waited some more. Finally, the surgeon came out to talk to us. He pulled us into a private room and shut the door. The only things in the room were a Bible and some Kleenex. He said that the situation was worse than they guessed. From the biopses they had taken, the found that Simon’s entire colon and some of his small intestine did not work. It would all have to be removed. I don’t remember what my husband, Todd, said or did, but I will never forget my question to the surgeon. “Can you save his life?”

“Yes,” was his reply.

Simon

Simon with his parents, Todd and Heather, on the day of his baptism

When we walked into his room at the NICU following his surgery, Simon was sill asleep. He needed an ileostomy to divert his intestines so they could heal. His intestine was basically pulled out his side and just open. It was so scary to see that on a baby.

The nurses had to teach us how to attach this little bag to his side. Then, he had a catheter inserted into his chest so that he could have IV fluids. There was a long tube that ran inside his vein and next to his heart. They taught us how to care for this, too. Simon wouldn’t gain weight drinking bottles alone, so they decided to use a feeding tube to give him food continuously. On more than one occasion, we were not sure Simon would make it. Overnight I became a nurse, and, so did Simon’s dad.

Simon was born with something called “Hirschsprung’s Disease”; one in every 5,000 babies has it. There is no cure, no way to fix it, but it is usually medically manageable.  It is a congenital disorder of the colon which results in nerve cells being absent which creates chronic constipation. If things can’t move through, then they remove parts of the colon that don’t work, and sew the rest back together, in what is called a pull-through surgery.

When he left the NICU, he didn’t leave the hospital. Simon was transferred to the Intestinal Rehabilitation and Gastrointestinal Unit where he works on his feeding, absorption, and digestion. Simon had seven hospital admissions in his first eight months of life for a total of 128 days.

Simon

With the help from a speech-language pathologist, Simon is learning to eat and drink for himself

Simon loved to eat, but suddenly, he stopped wanting to drink a bottle. Why? Well, he was always connected to a feeding tube which continually provided his nutritional support, so he was never hungry. We found out this is a common problem with babies that receive tube feedings. Our local pediatrician recommended that we contact a speech language pathologist to help us. “WHAT?!?” I thought to myself. He must have read my expression, because he told us that SLPs don’t just treat speech problems; they also address feeding, cognitive-communication, and swallowing disorders.

Imagine that! I’ve worked for the Scottish Rite for all these years, and I never knew the field was more than just speech.

The first thing I did was get online to find a local RiteCare clinic, but we had recently moved for my husband’s job. The closest Scottish Rite sponsored clinics were now over 120 miles and at least two hours away in Washington, D.C., or Baltimore, Maryland. I was bummed! I knew the quality fo care that our clinics provide. I’ve worked closely with some of the leading speech pathologists in the nation, and lived only tem minutes from one of the clinics for many years, but now I lived in a place where my son couldn’t be seen at a RiteCare facility.

Simon

"Working for the Scottish Rite for all these years, never, did I realize how important our philanthropy, RiteCare, really is to parents."

Luckily, Simon’s doctor recommended an SLP who worked at our local hospital, located only five minutes from our house. With the help of Tina Wehberg, MS, CCC-SLP, Simon learned how to eat again, and then he learned how to drink. Working for the Scottish Rite for all thee years, never, did I realize how important our philanthropy, RiteCare, really is to parents. Never did I think I would need the services of such a clinic. That is until our own son, Simon, was helped through the care, professionalism, and expertise of a Speech Language Pathologist.

We didn’t have the opportunity to take Simon to a RiteCare clinic for his care, but if needed, where will your child or your grandchild receive care in your hometown? Support your local RiteCare philanthropy. It does make a difference! Look at Simon, who gets a little better every day. Some RiteCare clinics provide diagnostic evaluation, while others provide treatment of speech and language disorders. Each operates individually and is managed and funded locally. If you don’t have a RiteCare clinic, think about it. Why not? You could start one!

To follow more of Simon’s story, visit his website at www.caringbridge.org/visit/simonkissam.

This story was written by Heather Calloway, Director of Special Programs, and originally appeared in the November/December 2011 issue of The Scottish Rite Journal.

To One Mother’s Shock!

 I was dreaming, dreaming that my son was safe in school every time I drop him off.”

— My Mom Sahra

This is a personal article and close to my heart, after my younger brother experienced verbal, physical, death threats, and cyber harassment; before, after, and during school. We contacted school administrators to inform them about the serious harassment and asked them to solve the problem. Two days of suspension for the bully was the only action they took. Immediately following his suspension friends of the bully joined him and the harassment escalated. The next two weeks we did not hear from the school administrators, and the harassment now occurred in the classrooms, cafeteria, basketball games, and practices, to the point that my brother did not want to go to school anymore.

The next morning we called the school and requested the same day a conference with the principle, teacher, counselor, and the basketball coach. When we asked them the status of the original harassment, their answers were ―two days of suspension of the student took care of the problem.‖ We informed that the last two weeks, while we were waiting for the result of the school investigations, the harassment had continued and escalated. Meanwhile, friends of the bully retaliated for him in the classrooms, cafeteria, and basketball games. This is why we are having this meeting with everyone today, because of the original threat, retaliations and the lack of solution from the school administration. We believe that the school and the administration failed to provide a safe and secure learning environment for on a daily basis.

We learned from the school counselor, that often bullies have parenting problems, self esteem issues, below average academic skills, and some have language problems. More boys are bullied than girls in elementary, middle school and most severe cases are in high school. It was heart breaking to learn this information from the counselor. And after we provided the original Facebook death threat, the only action taken by the school was two days suspension.

That’s when we decided to educate ourselves about bullying and learn everything we can to keep us informed. We learned cyber bullying and school bullying is more frequent than we realized. Even though some students do not have access to the social network, like student ―A‖, they cannot escape cyber bullying. They will likely experience more bullying in person. As we researched we learned that bullying can ultimately lead to suicidal action, physical aggression, and experimentation with drugs and alcohol so they don’t have to think about their situation.

What Defines Bullying?

It means repeated cyber bullying, physical, verbal and psychological attacks or intimidation directed against a student who cannot properly defend him or herself because of size or strength, or the student is outnumbered or less psychologically strong enough to stand up to the bully. Then, we asked my brother and his friends why they don’t speak up about bullying.

This was their answer – because adults, teachers and counselors fail to understand and even underestimate the extent of bullying. Students do not believe that most teachers or parents respond effectively to the situation or some times do not intervene. These are some reasons:

  • fearing they would not be believed,
  • not wanting to worry their parents,
  • having no confidence that anything would change as a result,
  • thinking their parents’ or teacher’s advice would make the problem worse,
  • fearing their teacher would tell the bully who told on him or her
  • fear of retaliation,
  • feeling shame at not being able to stand up for themselves.

 We believed when my brother went to school he was in a safe environment, and did not worry about physical, verbal, and death threats. We thought the school administration was fulfilling their duty of protecting the student. That was not the case. We hope no other families ever experience the fear and humiliation of bullying and social network death threats.

What Can Be Done?

Surely, not enough was done to ensure that child’s safety. As a former administrator of student services, in my district, a published death threat was grounds for immediate suspension and expulsion. The student/bully needs intervention, too. He is on the path to incarceration. At the same time, this student’s cumulative file would be read. Does he have a history of aggression? Does he have a learning/language disability? If so, has he had any special services? Has he been abused? Does he have a history of school failure? Sadly, it isn’t likely that this is the first time that student has engaged in “socially inappropriate behavior”.

S Speech Language Pathologists are often involved in similar cases. It is surprising how often a language/learning disability and/or a social skills disorder underlies aggressive behavior and school failure.

One year ago, the federal Department of Education’s nationwide letter urging educators to combat bullying in their schools is a strong and significant message that this abusive behavior will not be tolerated. The letter outlines legal obligations to protect students, provides examples, and illustrates how schools should respond. Technology is a factor in bullying that was not present years ago. In New York State, the governor – on September 8, signed a comprehensive anti-bullying bill, the Dignity for All Students Act.

An expert says, classroom guidance to teach appropriate social skills must be provided to all students. And then individual and small group interventions must also be utilized for those students who are bullies or being bullied. In schools, the “speech teacher” is most often the staff member selected to teach the verbal and body language of empathy, respect, non-aggressive strategies and group social skills.

At the Center, we have several children with similar objectives. In preschool age children, this deficit manifests itself in behaviors such as intractable tantrums, kicking, biting, spitting, pinching, scratching and sometimes worse. Such behavior has not been directed at the staff, but usually at the parent. Since we have such close contact with parents, we can form an effective team teaching the child to use specific language to replace the physical behavior. It’s also very effective to get to know the child’s limits and to relieve pressure or other means to defuse their anxiety before they “lose it”. In addition, we are thankful for your donations which enabled us to purchase the “Kimochis”. Kimochis are a set of five stuffed animals who come with three different behaviors in their pockets. The children can experience the value of specific words attached to certain “feelings” and decide how to change their Kimochi’s words to reflect “better” feelings, actions and words. There is a curriculum specific to the Kimochis. But at $500, it is too expensive. We have been developing our own activities. Thank you for making it possible to buy the set of Kimochis. It helps us address an increasing need. We still remediate s and r, teach linguistics, sentence structure and increase vocabulary, teach phonological processes (precursurer to phonics and reading and spelling), strengthen auditory memory, stop drooling and develop oral-motor skills, practice conversational skills with our deaf and hard of hearing group, and yes, work on social skills to helper children function in society.

Thank you for your support! Your donations have helped over 260 children!

Our Wish List:

  1. May you have peace and joy during this wonderful season!
  2. We wish we could serve more children by opening one more afternoon!
  3. Flat Screen TV with closed loop for Waiting Room showing our children and thanking our donors and volunteers.

Language Center News – October 2011

A happy child at the Orange County Language CenterA great big thank you to Ralph Shelton for accompanying me to the Anaheim White House Restaurant on August 30! Why were we there? The chef/owner of the White House Restaurant, Bruno Serato, is well known throughout Orange County. Not only does he provide local patrons with exquisite ambiance and culinary delights, he is also well-known for providing free meals daily to hundreds of hungry, “motel-kids”.

This particular evening hundreds of representatives from local charities were there (mandatory attendance) eagerly waiting to hear their names announced as one of the winners of a “luncheon for 100 guests”. These luncheons will be provided by Bruno and his staff as a fundraiser for those charities whose names would be called to receive one of 50 luncheons to be held on Wednesdays for the next three years! Yes, CNN cameras were there. TV journalist Ed Arnold was there. Bruno had been calling out the names of charities and was now nearing the middle of the year 2013. We had been standing for 2 hours! We could not leave – that would forfeit our spot – IF we were selected.

Do you think we “won” one of those luncheons? Would you like to read the letter I submitted? You bet we did!!! And our entry letter is attached. Save the date for an exclusive lunch in 2013!

Congratulations also goes to Bob McNamara who submitted an entry on behalf of the Anaheim Meals on Wheels! And won a luncheon, too!

We are growing a wonderful reputation throughout the county – which means we are growing a longer waiting list and have many inquiries weekly. We are very much in need of help with some of our administrative tasks, such as taking and making phone calls, making copies, filing, and making folders. Our educational workshop fundraiser is in 2 months, and we will also need help in taking registrations, listing checks, and answering questions. I hope there are a few lucky people who can volunteer a couple of hours per day at the Center! And those lucky people will be us – your staff!

Please accept my gratitude for all the support you give to our families!

Gina, Ruth and Fardowsa

Language Center News – September 2011

As I listen to our parents talk about what speech therapy has meant to their child/children, I thought I should share some of their thoughts with all of you. This is how you touch our families.

What a wonderful mission this Valley and the Scottish Rite Foundation have undertaken. The Santa Ana Valley has been dedicated to providing the gift of speech and language services for the past 10 years-the gift of the promise of success in school, socially, and professionally.

How fortunate I have been to be a part of this mission!

Childhood language disorders – I call them the “Invisible Disability” because very often one can not know that a child or an adult may be suffering from a speech disorder. This disorder affects more children than all other childhood problems combined. They may be part of a larger constellation of serious conditions such as orthopedic problems, deafness, autism, and other syndromes. But more often the language disorder sneaks up on our children and makes its presence known gradually throughout the early developmental years. If left untreated, little by little, the child is left out, left alone, not understood, and not succeeding in school. Here in Orange County, as many as 85% of the juvenile detention center population have been diagnosed with a speech or language learning disorder! The phrase ―speech and language disorders‖ includes delayed or atypical development in learning to speak or understand or master reading and writing. Early identification and treatment is key. The Scottish Rite understands the importance of mitigating the effects of Speech/language disabilities.

The mother of one of our children has said, “Though I’ve found some words, they still feel inadequate. There is simply no written symbol sufficient to demonstrate the appreciation which our entire family feels for all you have done for Toby. You took our beloved, destined for failure…and pointed him in the direction of happiness and success. Thank you for saving our child’s life.

Please accept my gratitude for all you do!

Gina, Ruth and Fardowsa