Disability
Page 2
Flex Your Brain
Gluten Free Newsletter and Helps
www.celiaccentral.org/News/NFCA-Newsletters/Celiac-Central-Newsletter
Aspirations
This program is designed to give young adults with Autism Spectrum Disorders (ASD) the opportunity to discuss their own vocational and social experiences in a small group setting and be guided in ways of how to improve their skills in these areas.
Children's Buy-In Program (CBI) from Ohio Dept. of Job and Family Services
As you may know, the Ohio Dept. of Job and Family Services began the Children's Buy-In (CBI) program in April.
CBI was expected to cover 5,000 kids with special health needs whose working parents were struggling to cover their health care costs. So far, only two children have successfully been enrolled.
Part of this is due to the eligibility requirements and the other is simply because families aren't aware of the program.
CBI targets working families with income ABOVE $42,000 per year.
To date, 90 percent of those who have applied have actually been under income.
Anything you can do to spread the word to eligible families would be greatly appreciated.
Here is the link to the CBI Web site:
jfs.ohio.gov/OHP/cbi/index.stm
Families can only apply online.
Feel free to add this link to your Web site or in any newsletters/mailings you may send to families and providers working with children. Since CareSource will be the providing access to the services, a marketing brochure is available that includes income requirements, covered services and associated costs.
If you have any questions or would like to request a presentation for your organization, please contact me using the information below.
Toni Bigby
Consumer Advocacy Director
CareSource Management Group
65 E. State Street, 8th Floor
Columbus, Ohio 43215
Computers for people with disabilities
Irlen Syndrome
By Phone:
1-800-55-IRLEN
By Mail:
Irlen Institute International Headquarters
5380 Village Road
Long Beach, CA 90808
California/Chico: 2009: Feb 20-21; May 1-2; Aug 7-8; Dec 4-5.
For information, contact Susan Hughes at 530-891-4783;
California/San Francisco:
2009: March 21 & 28; July 18 & 25. For information, contact James Cole, EdD, at 510-729-7932;
Canada/BC/Kelowna: 2009: Jan 2-3, August 20-21.
For information, contact Bonnie Williams at 250-808-6192;
Canada/BC/Vancouver: 2009: Jan 30-31, May 30-31.
For information, contact Bonnie Williams at 250-808-6192;
irlenbc@shaw.ca Canada/MB/Dauphin: 2009: Feb 21-22.
For more information, contact Val Rizok at 204-638-2961;
Canada/MB/TBD: 2009: April 18-19; May 23-24 (location to be determined).
For more information, contact Val Rizok at 204-638-2961;
Canada/ONT/Hamilton:
2009: May 23-24. For more information contact Adel Francis at 613-230-3995;
Canada/ONT/Toronto: 2009: March 28-29, Aug 19-21.
For information contact Adel Francis at 613-230-3995;
Colorado/Steamboat Springs:
2009: July 10-11.
For more information contact Bonnie Bartels at 515-556-5969;
England/North-East: 2009: Jan. 14 & 24; Feb. 25 & Mar. 24; Mar. 25 & Apr. 21; Apr. 23 & May 21; May 20 & June 17.
For more information, contact Celia Stone at 0113-219-3653;
Hawaii/Honolulu: 2009: April 3-4.
For more information, contact Susan Hughes at 530-891-4783;
Indiana/Madison: 2009: June 12-13, Sept. 18-19.
For information, contact Catherine Barnes at 859-489-7773;
Iowa/Des Moines: 2009: April 24-25.
For more information contact Bonnie Bartels at 515-556-5969;
Kansas/Wichita: 2009: April 10-11; June 12-13; Nov 7-8. For more information, contact Cathryn Hay, PhD., at 316-689-4233;
Mexico/Monterrey: For dates and information contact Ana Lucila
at 81-1133-8105;
Nevada/Las Vegas: 2009: Mar 13-14; Sept 18-19.
For information, contact Susan Hughes at 530-891-4783;
scotopic@aol.com New York/Kingston: 2009: March 14-15, Aug 11-12, Nov 14-15.
For information, contact Carol Kessler, PhD, at 845-334-9340;
Ohio/Toledo: 2009: Jan 24-25, Feb 21-22, March 14-15, April 18-19, May 2-3 & 16-17.
For information, contact Elaine Gutowitz at 419-841-9566;
Oklahoma/Tulsa: 2009: Jan 29-Feb 3.
for more information, contact Catherine Barnes at 859-489-7773;
Tennesssee/Murfreesboro: 2009: April 18-19, 2009. For information, contact Catherine Barnes at 859-489-7773;
For information contact Patricia Johnson, Ph.D., at 281-428-7039;
Texas/Houston: 2009: Jan 9-10, March 6-7, July 30-31; Oct 2-3.
For more information contact Carol Zuccone, EdD, at 713-771-3108;
Washington/Seattle: 2009: Feb 27-28, July 31-Aug 1, Oct 23-24.
For more information contact Kirstie Lewis, PhD, at 425-562-8928;
www.ninds.nih.gov/find_people/groups/mdcc/index.htm
Speech Therapy At Home
Beyond Speech Therapy Learning helps children Pre K - 4th grade with pre-reading, language, and articulation.
We will customize a program to help your child excel.
Once the program has been created, you will have daily access to their website.
You can view a live demo at
The cost of the program is $99 a month.
What does bstlearning cover?
1. Articulation - Initial, medial, final positions and clusters.
2. Morphology- plurals, possessives, copulas, auxillaries, third person singular, regular past tense etc.
3. Semantics- vocabulary, synonyms, antonyms, multiple meaning words, categories, basic concepts etc.
4. Phonological Sensitivity- word, syllable, and phoneme levels. What makes bstlearning special?
1. Innovative speech therapy program.
2. Research based. Our program is research based. For example the articulation section uses a traditional model.
3. Hierarchies. Children will progress through a hierarchy of lessons until they have mastered their goals.
4. Daily Access. Research shows children that participate in a structured home program make progress faster. Research also shows that intensive speech therapy yields greater progress.
5. Repetition. Research shows that repetition helps with generalization. We want children to be able to use their new skill in all environments.
6. Randomization. All the questions are randomized. This prevents children from memorizing the answers.
7. Theme based. Our program is theme based. Children are able to change their theme on a daily basis.
8. Updated. The program can be updated anytime.
Top 5 reasons why you should sign up for Beyond Speech Therapy Learning Today:
1. Free Month. Sign up before July 31st and you will receive one free month of service (first time users only).
2. Make progress faster. Children who participate in a structured home program make significantly greater progress than children who do not.
3. Customization. The program is customized for your child.
4. Daily Access. Children can access their personalized program anytime via the Internet.
5. Monitor Progress. Easy access to online reports.
Sign up today by emailing us at
or by calling us toll free 866-395-1911.
We look forward to serving you.
Prader-Willi Syndrome
Prader-Willi Syndrome is the most common genetic cause of life-threatening obesity in children.
People with Prader-Willi syndrome have a problem in their hypothalamus, a part of the brain that normally controls feelings of fullness or hunger.
As a result, they never feel full and have a constant urge to eat that they cannot control. Most cases of Prader-Willi syndrome result from a spontaneous genetic error in genes on chromosome 15 that occurs at conception.
In very rare cases, the mutation is inherited.
What are the symptoms of Prader-Willi syndrome?
There are generally two stages of symptoms for people with Prader-Willi syndrome: Stage 1--As newborns, babies with Prader-Willi can have low muscle tone, which can affect their ability to suck properly.
As a result, babies may need special feeding techniques to help them eat, and infants may have problems gaining weight. As these babies grow older, their strength and muscle tone usually get better. They meet motor milestones, but are usually slower in doing so.
Stage 2--Between the ages of 1 and 6 years old, the disorder changes to one of constant hunger and food seeking. Most people with Prader-Willi syndrome have an insatiable appetite, meaning they never feel full. In fact, their brains are telling them they are starving. They may have trouble regulating their own eating and may need external restrictions on food, including locked kitchen and food storage areas.
This problem is made worse because people with Prader-Willi syndrome use fewer calories than those without the syndrome because they have less muscle mass. The combination of eating massive amounts of food and not burning enough calories can lead to life-threatening obesity if the diet is not kept under strict control.
There are other symptoms that may affect people with Prader-Willi, including:
Behavioral problems, usually during transitions and unanticipated changes, such as stubbornness or temper tantrums
Delayed motor skills and speech due to low muscle tone
Cognitive problems, ranging from near normal intelligence to mild mental retardation; learning disabilities are common
Repetitive thoughts and verbalizations
Collecting and hoarding of possessions
Picking at skin
Low sex hormone levels
Prader-Willi syndrome is considered a spectrum disorder, meaning not all symptoms will occur in everyone affected and the symptoms may range from mild to severe. People with Prader-Willi often have some mental strengths as well, such as skills in jigsaw puzzles. If obesity is prevented, people with the syndrome can live a normal lifespan.
What are the treatments for Prader-Willi syndrome?
Prader-Willi syndrome cannot be cured. But, early intervention can help people build skills for adapting to the disorder. Early diagnosis can also help parents learn about the condition and prepare for future challenges.
A health care provider can do a blood test to check for Prader-Willi syndrome. Exercise and physical activity can help control weight and help with motor skills.
Speech therapy may be needed to help with oral skills. Human growth hormone has been found to be helpful in treating Prader-Willi syndrome. It can help to increase height, decrease body fat, and increase muscle mass. However, no medications have yet been found to control appetite in those with Prader-Willi.
Fragile X Syndrome
What is Fragile X syndrome?
Fragile X syndrome is the most common form of inherited mental retardation. Fragile X happens when there is a change, or mutation, in a single gene called the Fragile X Mental Retardation 1 (FMR1) gene.
This gene normally makes a protein the body needs for the brain to develop. But when there is a change in this gene, the body makes only a little bit or none of the protein, which can cause the symptoms of Fragile X.
Fragile X is inherited, which means it is passed down from parents to children. Parents can have children with Fragile X even if the parents do not have Fragile X themselves.
The changes in the gene can become more serious when passed from parent to child. Some people may only have a small change in their FMR1 gene (called a premutation) and may not show any signs of Fragile X. Other people may have bigger changes in the gene, called a full mutation, that cause the symptoms of Fragile X Syndrome.
What are the signs and symptoms of Fragile X syndrome?
Not everyone with Fragile X has the same signs and symptoms, but they do have some things in common. Symptoms are often milder in girls than in boys. Here are some common signs of
Fragile X:
Intelligence and learning – Many people with Fragile X have intellectual disabilities. These problems can range from mild learning disabilities to more severe mental retardation.
Physical – Teens and adults with Fragile X may have long ears, faces, and jaws. Many people with Fragile X may also have loose, flexible joints. They may have flat feet and be able to extend joints like the thumb, knee, and elbow further than normal.
Social and Emotional – Most children with Fragile X have some behavior challenges. They may be afraid or anxious in new situations. Many children, especially boys, have trouble paying attention or may be aggressive. Girls may be shy around new people.
Speech and Language – Most boys with Fragile X have some problems with speech and language. They may have trouble speaking clearly, or may stutter, or leave out parts of their words. They may also have problems understanding “clues” when talking to other people, such as understanding the speaker’s tone of voice or that person’s body language. Girls usually do not have severe problems with speech or language.
Sensory – Many children with Fragile X are bothered by certain sensations, such as bright light, loud noises, or the way something feels. Some do not like to be touched, or have trouble making eye contact with other people
What are the treatments for Fragile X syndrome?
There is no cure for Fragile X, but there are ways to help with the symptoms.
People with Fragile X can get help to reduce or eliminate some of the learning, physical, social and emotional, speech and language, and sensory problems common in Fragile X. The sooner those with Fragile X get help, the more they can learn and the better their outcomes.
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