Blog #232~Online Links for Special Needs Parents
This week, I’ve provided a list of online links, to support special needs parents. These links are for parents of individuals with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities:
Down syndrome support links:
http://www.ndss.org The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.
http://www.ndsccenter.org The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.
http://www.nads.org NADS is the National Association for Down syndrome and a solid support group in the Chicago area. There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome).
http://www.gigiplayhouse.org Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.
http://www.noahsdad.com Support and inspiration for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. Noah’s Dad has also launched Hope Story to raise awareness and provide additional support.
https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.
http://www.futureofdowns.com Run by parents of children with Down’s syndrome. Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.
Autism support links:
http://www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This site provides solid information and strategies related to autism.
http://www.autismspeaks.org Autism Speaks provides information and advocacy and good general information and links.
http://www.autism-society.org The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.
http://www.tacanow.org Talk About Curing Autism and has a ton of links and articles along with coffee groups.
http://www.myautismteam.com Online support group for parents to share daily trials, triumphs, questions and recommendations.
http://www.mayer-johnson.com Boardmaker software for assistive technology/AAC devices.
http://www.teeach.com Information on TEEACH materials
More links for special needs parents:
https://thearc.org The Arc: For People With Intellectual and Developmental- Information and referral services, individual advocacy to address education, employment, health care and other concerns, self-advocacy initiatives, residential support, family support, employment programs, leisure and recreational programs.
https://www.parentingspecialneeds.org Parenting Special Needs Magazine share information and inspiration for parents of children with special needs.
https://www.woodbinehouse.com/ Publisher of the Special-Needs Collection…books for parents, children, teachers, and other professionals.
https://www.catherinewhitcher.com IEP Coach Catherine Whitcher works with families and educators, provides IEP coach training, blogs and podcasts to help navigate IEP’s.
http://www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.
http://www.easterseals.com Easter Seals offers programs, training and equipment for families.
wwww.bridges4kids.org Great, practical resources for special needs families.
http://www.specialedadvocacy.org Advocacy site for parents and teachers
Down syndrome and autism links:
https://http://www.nickspecialneeds.com My site provides solid information on topics specific to a dual diagnosis of Down syndrome and autism (DS-ASD), including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.
http://www.ds-asd-connection.org Offers good information related to a dual diagnosis of Down syndrome and autism.
http://www.theupsideofdowns.org Provides support, advocacy and information specific to a dual diagnosis of Down syndrome and autism.
Facebook groups for DS-ASD There are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and help each other. Visit my Facebook page- Down Syndrome With a Slice of Autism. You can also type in Down syndrome and autism into the search box to access additional groups.
Online support groups and links provide information, assistance, resources and encouragement, for parents who have a child with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities. As a parent, remember you don’t have to navigate the special needs path alone, help is out there!
That’s what is in my noggin this week! 🙂
~Teresa
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The key lies in identifying your child’s strengths, and working to build upon them. First of all, just because my son’s speech is limited doesn’t mean he can’t communicate. One of Nick’s assets is his receptive language, which is the ability to understand information. Many of his goals in his IEP (Individualized Education Plan), were planned around using this strength when he was in school. Nick was able to develop skills to become more independent in self-help, and other jobs both at home and school. These skills were enhanced by using educational materials and supports that were written into his IEP. Such materials included a PECS book (Picture Exchange Communication System) with training for staff, parents and child, Augmentative Alternative Communication (AAC) devices, task strips, social stories, a picture schedule, video modeling, and a reward system. All of these supports helped Nick to navigate his routine and built upon his functional and independent livings skills.
Down Syndrome with a Slice of Autism 