By Elayne Pearson, CAS, Speaker/Author/Disability Advocate
World Down Syndrome Day, March 21st – was created for public awareness, promoting fundamental freedoms, and encouraging inclusion for individuals with Down syndrome.
Many know Down syndrome is a genetically-based condition resulting in a range of mental impairments and developmental delays. It’s official term, Trisomy 21, is caused by an unusual division of the two 21st chromosomes into three. Hence, the term Tri-somy 21.
So, March is the third month, and the 21st day designates World Down Syndrome day. Get it? Trisomy 21 on 3/21. Clever, huh?
Scientists hypothesize the chromosomal change happens at conception, and currently, there is no known cure for Down syndrome. I could go on with boring scientific stuff, but I won’t. But believe me, life with a child with Down syndrome is anything but boring! We testify of that. Having Heidi in our family has been a joyous adventure for almost 30 years.
Dr. Bruce E. Wexler is a Professor at Yale University. He graduated Magna Cum Laude from Harvard College, received his MD from Albert Einstein College of Medicine, studied psychiatry at Anna Freud’s Hampstead Clinic, neurology at Queen’s Square Institute of Neurology, and psychiatry at Yale. Author of over 125 scientific articles, Professor Wexler is a world leader in harnessing neuroplasticity to improve cognition through brain exercises. He and colleagues developed the first program that integrates computerized brain exercises and physical exercises to improve executive function in young children, a program in use by thousands of children in schools across the U.S. Dr. Wexler and colleagues have also developed programs that are effective treatments for ADHD and geriatric depression.
By Taveesha Guyton, Social Worker
Being a caregiver is hard. The scheduling of medical, dental, school and after school activities and appointments is daunting. Let us not forget meal prep and clean up followed by the constant cleaning after little people who leave toys, and food everywhere. Yes, being a caregiver is difficult, and it is not easy when one is the caregiver of a child with Special Needs such as Intellectually Disabilities or Autism. Is there care for the caregiver and if so, what does care include? Here are some helpful tips to help caregivers.
“Hand in Hand with Elayne”
By Elayne Pearson, Special Needs Preparedness Specialist, CAS
Most children love Halloween, but it can be tricky―and downright scary for some. This holiday can be problematic for people with sensory issues―from the intense sights, sounds, smells, tastes, and textures bombarding them each October. If you have a child affected by a special-need, especially autism, Halloween can be a complex time. It can conjure a cauldron of concerns―resulting in amplified anxiety, increased impulsivity, deeper withdrawal, and even insomnia and nightmares. Yikes!
Over the many years with Heidi Ann (our little pumpkin with Down syndrome and autism) I learned several strategies to make this crazy/creepy holiday not only a happier one for her, but a sane one for us. My acronym “HALLOWEEN” offers options, cautions, and examples to help set a better tone.
Healthcare and education professionals are invited to participate in the 1st Annual International Symposium on Cognitive Research & Disabilities, which is set to take place February 13-14, 2017 at the World Golf Village in St. Augustine, Florida. The symposium is designed to equip professionals with the tools they need to increase the quality of care and improve outcomes for both students and patients with cognitive and developmental disabilities. Top cognitive research experts and educational leaders will conduct TED Talk formatted panel discussions on topics relating to healthcare and education for this 1.5 day event hosted by the International Board of Credentialing and Continuing Education Standards (IBCCES).
“The latest research tells us that 94% of the population will either be personally affected by or have an immediate family member affected by one or more of the top cognitive disorders sometime in the next 20 years,” said Myron Pincomb, International Board of Credentialing and Continuing Education Standards (IBCCES) Board Chairman. “No other profession is impacted by these findings more than our educators and health care professionals.”
By: Sheryl Rosin Ph.D.,CCC-SLP, Owner/Director of Palm Beach Speech-Language Specialists, CAS and Trainer for IBCCES, Adjunct Professor, Nova Southeastern University
I have been working with individuals with autism for 20 years and have met many interesting and exciting people along the way. In this blog, I have someone that I would like to introduce to you that I believe is an extraordinary person. His name is Dominik and he is 14-years-old. Dominik has diagnoses of autism and apraxia and is essentially non-verbal with his spoken language, but is definitely NOT non-verbal when using other means to communicate aside from the spoken word. Upon meeting Dominik, you may assume that he has limited communication skills, but since we presume competence when working with our clients, I learned that the opposite it true. Dominik has a passion for writing and using language to communicate his vast interests. One of the ways he has learned to do this is through an augmentative communication application called “Speak for Yourself (SFY).” SFY runs as a communication device on the iPad and uses synthetic speech to aid individuals with their expressive language output. It is based on core vocabulary and allows the person to communicate using generative language. Dominik has learned to use the augmentative communication system to express his wants and needs, feelings, hold conversations with others, and to communicate his expansive knowledge and interests in a variety of topics. Our conversations using AAC have ranged from the etiology of autism to future careers. Dominik thinks that vaccines “are the culprit of autism” and wants to be “a neurologist” when he is older. When Dominik communicates using AAC, he let us into his amazing world of thought. Not only does he use SFY; he can type on a computer keyboard, write with facilitated assistance, and is now starting to use verbal speech as AAC has been a bridge to developing spoken language for him.
By Anita Lesko, BSN, RN, MS, CRNA
It is called Autism Spectrum Disorder (ASD) for a very good reason. There are individuals at one end of the spectrum who cannot speak, or need total assistance with activities of daily living, and at the other end of the spectrum are highly gifted people who are brilliant and need no assistance at all. There is a wide range of symptoms, severity of those symptoms, skills, and level of disability.
The word “autism” has its origin in the Greek word “autos,” which means self. Children with ASD tend to seem as if they exist in a private world, self-absorbed, unable to successfully communicate with others nor interact with them. Children with ASD may have difficulty developing language skills and understanding what others say to them. Additionally, they might also have difficulty with nonverbal communication, such as eye contact, facial expressions, and hand gestures.
It can be quite challenging to healthcare providers the vast differences between individuals with ASD. Not every child will have difficulties with communication. Some have no ability to speak, while others have extreme ability to talk about their favourite interests in great detail. For those that can talk, they typically have difficulty using language effectively when talking to others. They may also have difficulty processing what they hear, and not understand what was said to them. For example, if an autistic child or adult is given verbal instructions on how to complete a task, they might not understand how to do it. Yet, if they are given an actual demonstration of doing the same task, they are then able to successfully do it themselves. It’s not uncommon for parents to think their child has hearing issues, because they don’t respond when spoken to. They then take the child for hearing testing, only to learn there is no hearing deficit.
Thelma Atha, M.Ed, CAS; Director of Counseling Department & Learning Support Specialist at Lincoln International Academy in Managua, Nicaragua; Private practice in Managua, Nicaragua focused on Sensory Integration Therapy, TEACCH, and Behavior Modification Therapy.
Country: Managua, Nicaragua
School/ Organizations/Center: Lincoln International Academy, Managua, Nicaragua
By Taveesha Guyton, Social Worker & soon-to-be CAS
I am a social work professional whose expertise is working with the intellectually-disabled and population of individuals with autism. I really love my job and who I work for. My sole purpose in my position is to provide resources, education and advocacy for this steady growing population, which affects 1 in 68 births in the United States.
1. Listen to you clients. What I want for my clients is very different from what they want for themselves. Many times in the field, professionals who work with clients look at the end result versus looking at the here and now. I have learned to listen what is being said and sometimes what is not being said.
2. Provide Choices. Providing choices. It is important to exercise the ability to choose. Providing options are the best way for people to find out what they like and do not like and it also helps create more conversation about many other things. Choice making is a skill I feel is not exercised enough with this population. (Check out great visual support ideas here.)
3. Ensure proper supports are in place. What is needed for this individual with autism to maintain a ” normal” life is usually the question asked and how do we as a professionally supportive community help create this world for this individual? Will the individual need vocational rehabilitation because their goal is to earn competitive wages? If the individual’s goal is to live alone, will this person need the assistance of a Supported Living Coach? Will this individual need guidance for activities of daily living such as medication management, making doctor’s appointments, meal preparation and grocery shopping? What about socialization and community-based outings? Will the individual need someone to help integrate them into the community?
In assisting in the coordination and maintenance of services for the individual with special needs or autism, social workers are able to make the lives of individuals with autism a little better.
By Elayne Pearson, Special Needs Safety/Preparedness Specialist, CAS
More than one mother recently confided that getting her children ready to enter school with its fees, clothes, and required items was a real financial burden—and those students weren’t even in high school yet. I recalled those same September concerns years ago, knowing taxes were also due in November, and Christmas was just around the corner. With four amazing daughters, including Heidi (our beautiful daughter with Down syndrome and late-onset autism) my husband Rod and I felt so blessed, but our budget and stress levels were very stretched. With Heidi’s special needs for good quality vitamins/food, calming craniosacral therapy appointments each week, and educational toys and more – my motto, “keep it up!” served us well. Today’s parents can live this way, too, with some of our common sense advice.