Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Resources for Special Needs

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

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:

Down syndrome awareness ribbon

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:

autism ribbon

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.

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:

DS-ASD Ribbon

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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Posted in Autism, Resources for Special Needs

Blog #91~Autism Statistics: 1 in 68 Children

Blog #91~Autism Statistics: 1 in 68 Children

As most people know, April is Autism Awareness Month. Just a few weeks ago came the sobering news that 1 in 68 children in the US have autism (according to estimates from CDC’s March 2014 study).

autism 1 in 68

Take a look at how the numbers have increased over the years…..

autism through the years

The new statistics represent a 30 percent increase from the 2012 estimates of 1 in 88 children with autism. Why are the numbers growing so rapidly? Some speculate that it’s because the diagnostic methods which have improved over the years. I find it hard to believe that this is the only reason that the numbers are increasing. According to TACA (Talk About Curing Autism (www.tacanow.org), More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. In addition, autism costs the nation over $137 billion per year, a figure expected to significantly increase in the next decade.”

Autism has no single, known cause. There have been numerous studies linking autism to a wide variety of genetic and environmental factors. There have been several studies linking vaccines to autism and many parents who feel strongly that this was the case with their children.

Here’s the bottom line, there is a generation of children and their families who have been severely affected by autism. These children, like my son Nick are growing up and becoming adults.

Nick age 20……

IMG950055

Children and adults with autism are out in the community full force, with even more coming behind us. It’s time for a comprehensive national strategy. We need leadership to help us find answers for causes, treatment, solutions and resources for people who live with autism. We need compassion when we are out in the community struggling with our kids who make loud noises, flap their hands and have knock down drag out meltdowns. Changing the light bulb blue to promote  autism awareness isn’t going to help make things better for the lives of those affected by autism.

light it up blue

It’s time to send a loud message to Washington that the needs of the autism community are growing rapidly and the resources are limited, (not to mention the family bathrooms). I worry that when my son ages out of the school system at age 22, he’ll be stuck on a waiting list because there aren’t enough facilities available for community work, leisure and a secure group home. I am not alone here; there are almost two million others in the country who go to bed each night with the same concerns. That’s what is in my noggin this week.

~Teresa