RESOURCES

Below are some resources to help answer questions related to the health and development of individuals with Down syndrome.

Helpful Websites

Facts

Get the facts. Things have changed over the last 20 years for individuals and families affected by Down syndrome. Make sure that you read up to date information. We will strive to offer the most current information available.



Facts

  • Down syndrome is one of the most common occurring genetic conditions, caused by a chromosomal abnormality: an extra 21st chromosome.
  • It affects more than 350,000 people in the United States today. One in every 700-1,000 babies is born with Down syndrome.
  • Down syndrome occurs evenly in boys and girls, and includes all races, ethnic groups, socio-economic classes, and nationalitites.
  • While the age of the mother can be a factor, 80% of children with Down syndrome are born to parents under the age of 35.
  • People with Down syndrome lead happy and fulfilling lives socially, professionally, and interpersonally.
  • Opportunities today have never been greater. They include: increased integration in schools, health care systems, the work force, and social/recreational activities.
  • With advances in medical technology, individuals with Down syndrome are living longer than ever before. Average life expectancy is 55 years, but many live longer.
  • Parental love, nurturing, early intervention programs, educational opportunities, and community involvement directly assist each individual in achieving their potential.
  • People with Down syndrome are CAPABLE, VALUABLE, and UNIQUE.
  • Individuals with Down syndrome have unlimited potential when given the opportunity to succeed.

Legal Matters

"People First" Language

We are here to provide information to families regarding laws and rights that pertain to individuals with Down syndrome.



For more information, click here.

People with Down syndrome are people first. Put the person before the disability (i.e. "a student with Down syndrome" not "my Downs kiddo" or "he's Downs").



  • Avoid terms with negative connotations (i.e. retarded, handicapped). The preferable term is "intellectually disabled".
  • Avoid the use of stereotypes like "They are so loving" or "They are happy all the time!"
  • Avoid comparisons (i.e. mild, high/low functioning, severe).
  • Accept them!
  • People with Down syndrome have the same needs and emotions as people without Down syndrome. They deserve the same opportunities.
  • A child with Down syndrome is full of joy, laughter, and love.
  • There are more than 350,000 people with Down syndrome in the United States.

Health and Developement

Vision

Below are some resources to help answer questions related to the health and development of individuals with Down syndrome.



Below are some links to resources that will help you with your child's vision.



Specs4Us: If your child needs glasses, we found these frames that are espcially made for individuals with Down syndrome. The optometrist that designed the frames has a daughter that was born with Down syndrome. She needed glasses and was unable to find frames that fit her daughter's face without sliding down. So she designed these frames. They come in infant sizes as well. They are very flexible and durable. www.specs4us.com

Breastfeeding

iPhone/iPad Apps

Below are some resources to help answer questions related to successfully breastfeeding babies with Down syndrome.



MOBI Mother International: http://www.mobimotherhood.org/MM/article-down.aspx



La Leche League Organization - These articles are very informative and encouraging:

"Is It Possible To Breastfeed A Baby Born With Down Syndrome?"

http://www.llli.org/faq/down.html
 

"Breastfeeding My Baby With Down Syndrome"

http://www.llli.org/nb/nbmarapr08p24.html
 

"An Extra Chromosome"

http://www.llli.org/nb/nbnovdec08p20.html

"Thank You, La Leche League"

http://www.llli.org/nb/nbnovdec01p214.html



Please contact HOTNDS if you need additional information about nursing a baby with Down syndrome. We have Mothers who will be glad to talk to you and offer help and support.

Below is a list of helpful apps that have been created for children with down syndrome.



APPS AND FUNDING FOR AUTISM & SPECIAL NEEDS:

Families with exceptional children may find grants and funding available to help them afford the medical treatments, therapies, assistive technologies (including iPads), etc. that can help their child reach and grow to their potential. For a list of resources, go to: http://www.hotautismnetwork.org/files/AppsandFunding.doc.

  

More Resources:

Gaurdianships:

For more information on Guardianships, from Texas Project First - Families, Information, Resources, Support & Training, click on the link below.

http://texasprojectfirst.org/Guardianship.html

Holiday Survival Guide for Families with Special Needs:

Thanksgiving, Hanukkah, Christmas, New Year's and other holidays can be challenging for family members who have autism or other special needs. The sounds, sights, and schedule changes during this season can be difficult to manage. This terrific free publication, from AbilityPath.org, has tips and suggestions for toys, holiday decorating, tips for visiting Santa, how to deal with relatives who may not "get it", and more! Click here to download a copy: http://tinyurl.com/ABILITYPATHGUIDE

Special Ed Advocate: Successful IEP Meetings:

www.wrightslaw.com/nltr/11/nl.0927.htm
 

Effective advocacy comes from research, planning, and preparation. A pre-meeting worksheet (www.wrightslaw.com/info/premeeting.worksheet.pdf) is helpful before going into an ARD meeting to help parents and advocates organize; a Parent Agenda (www.wrightslaw.com/info.iep.sample.agenda.pdf) is also a helpful way to provide the school with a list of concerns and questions prior to the meeting so school members of your child's team will have time to prepare. Additionally, when there are disputes between the school and parents, parents need to understand their legal rights. "True advocacy is about improving the lives of children, and ensuring that they become independent, productive, taxpaying citizens who belong to the community in which they live."

"Parenting Through the IEP: Understanding the IEP Process":

A powerpoint presentation prepared by Torey Lewis, a local parent-advocate, to help parents understand and navigate through the special education process.To access the presentation, go to: 

www.hotautismnetwork.org/links

OR 

http://tinyurl.com/3n3lnbj

NEWS

The information listed below is provided for you to help you keep up with any news and legislation that may affect you or your children. Please check back here, as this information will constantly be changing.

Survey - Special Needs Resources in the Heart of Central Texas:

Does your area have anyone offering equine (horse) therapy? Swimming for special needs? Music classes? Is it easy, or difficult, to find a medical specialist for your special-needs family member where you live? This online survey (https://www.surveymonkey.com/s/SpecialNeedsResources) will help identify resource needs throughout the Heart of Central Texas area, and highlight opportunities for growth. The survey is open to persons with disabilities, family members, professionals, and others. Please help towards building a better comminity for all!





Changes in programs affecting persons with disabilities: Medicaid Waivers, ECI:

From "FYI", Texas Council for Developmental Disabilities newsletter (http://www.txddc.state.tx.us)

Medicaid Waivers
While many waiver participants will have no change, about 20% will face significant reductions starting in December, 2011. If you are currently receiving Medicaid Waiver services, you will be contacted regarding your situation; if you need services that exceed the limits, your service provider can apply for an exception to the cuts based on health, safety, and welfare. If an exception request is denied, you have the right to file for an appeal within 15 days of the denial of the exception.



Early Childhood Intervention:

The state budget reduces funding for Texas' Early Childhood Intervention (ECI) program by 14% for the next 2 years. The new eligibility criteria became effective on September 1, 2011, and only affects new participants.

Children can also qualify for ECI based on having specific medically diagnosed conditions or an auditory or visual impairment. For more information, a message from DARS Commissioner Debra Wanser about the changes is available at www.dars.state.tx.us.





Article- "The Hidden Potential of Autistic Kids" (Scientific American, Nov. 30, 2011:

http://www.scientificamerican.com/article.cfm?id=the-hidden-potential-of-autistic-kids

 

Excerpts: Schools are underestimating the abilities of autistic children all across the spectrum. Inaccurate testing have helped set expectations of autistic kids too low-assuming that they will not be able to learn the same things that the average child can. The most commonly administered intelligence test, the Wechsler Intelligence Scale for Children (WISC) almost seems designed to flunk an autistic person: it is a completely verbal, timed test that relies heavily on cultural and social knowledge. It asks questions like "What is the thing to do if you find an evelope int he street that is sealed, addressed, and has a new stamp on it?" and "What is the thing to do when you cut your finger?"





Article- "Changing Perceptions: The Power of Autism" (NATURE, Nov. 3, 2011:

http://www.nature.com/nature/journal/v479/n7371/full/479033a.html



While not minimizing the challenges that people with autism deal with on a daily basis, scientist Laurent Mottron writes in the journal Nature that those with ASD also possess strengths and talents that give them an advantage in certain fields of employment.

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support@hotdsn.org

 

Phone

254-230-9782

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