Monday, October 14, 2013

Finding support

When we go through rough patches in life, we turn to people for help, for support.  But what if no one understands what you're going through?  What if no one around you can relate to your hard times?  No matter how hard people try to be there for you and give you tips and advice, sometimes it's just not enough.  You need people you can talk to who really understand your struggles and frustrations.  You need people who will listen to you vent and know exactly what you are talking about.  You need people who understand that no matter how much you gripe and complain, you don't want to take anything away from your life, you just want to find helpful solutions to make it better. 

Getting a Down syndrome diagnosis, before or after birth, can be extremely hard for some families.  A lot of people who receive a diagnosis, actually know very little about Down syndrome and possibly have never met an individual with Down syndrome.  And the scary truth is, a lot of these families can't even turn to their own doctor for up-to-date, accurate information about the life of someone with Down syndrome, because what they know is very little or out-dated all together. 

The life of a person with Down syndrome has changed DRASTICALLY over the years.  There are so many resources available today to help individuals with intellectual disabilities grow into independent adults.  Having a child with Down syndrome is not the end of the world.  It isn't a death sentence for your family or your child.  There are no limits to what individuals with Down syndrome can do.  Each person is unique in his or her own way.  Yes, things take a little more work and sometimes require modifications in order to learn what is needed in life, but individuals with Down syndrome DO learn.  The sky really is the limit.  Just because your child has a diagnosis of Down syndrome, never let anybody tell you that something isn't possible, anything is possible!  

Some support groups that I have found helpful so far on my journey with Down syndrome are:

*  The Down Syndrome group on
*  The Down Syndrome Mommies group on Facebook
*   Parents with Children/Adults with Down Syndrome in Indiana group on Facebook
*  Our Adventures with Down Syndrome group on Facebook
*  Baby Center Down Syndrome Mom's group on Facebook
*  Our local Down syndrome chapter, Down Syndrome Indiana, based out of Indianapolis
*  Our very local Down Syndrome Support/Play group here in the Wabash Valley; The Wabash Valley S.T.A.R.S. (Also on Facebook)
*  Family Voices Indiana (Also on Facebook) - which is a family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.  I believe that everyone, or almost everyone, at Family Voices has a child(ren) with special needs and can better understand where parents are coming from. 
*  ASK (About Special Kids: Also on Facebook) - This is a place for families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes. ASK is a connection to family support in the state of Indiana!

All of these support options are places where parents can start asking questions, sharing joys and concerns, get advice and share information with other parents.  There are so many people, from all different walks of life, out there walking the same journey that we are.  All you have to do is reach out and connect with someone.  And most importantly, know that you are not alone! 

**If there are other places you know of where families can go for overall support, more so in Indiana, please include them as a comment!!! 

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