whoever you want to be…

Getting the help you need.

As a mother of a 3 year old and a new baby with Down Syndrome it was very easy to feel overwhelmed.  I needed help but didn’t realize just how much help there was out there for me.  We were extremely fortunate to get a great deal of help through our local school district.  Since I am a homeschooling mother I certainly didn’t think to contact them, but they got in touch with me!  Every week several ladies would come to our house.  One helped with speech, and at this early stage it mostly involved things like making sounds and using a straw to help with lip and tongue placement.  Another lady worked on the physical side  helping Jack learn to sit, stand, and ultimately to walk.  The team  and I would  gather every month or so and we’d go over our goals for Jack, check his progress and see what else we could do for him.  This therapy continued for 3 years and was so very helpful for Jack and reassuring for me.  As the therapy was all available to us at no cost I would certainly recommend other parents of children with Down’s Syndrome look out for it should they have the need.

Here in Lincoln Nebraska, our family was lucky enough to have the DSAF group to join.  The Down Syndrome Association for Families is a wealth of information, resources and support.  They organize a yearly “Buddy Walk” to raise money and awareness of Down Syndrome, hold classes on everything from Kindermusik to the latest apps on iPad that might benefit our kids. Through Peer Presentations they teach other children (and their teachers!) about Down Syndrome to aid classroom inclusion.  They host Mom’s nights out, Dad’s nights out, kids trips to the movies, pumpkin patch outings, picnics, pool parties and so many more events and activities all designed to foster support and  encouragement for local families.  The DSAF have a presence on Facebook and a wonderful blog to keep all the members informed and updated on events.  The organization has been a sanity saver for myself and the many other members, each of whom has something to contribute and wisdom to share.   The DSAF provided funds to pay for Jack to have a “buddy” when he went to camp last year, a real bonus and a weight off my mind knowing he had full time attention. They also ran a class to help kids with Down Syndrome learn to ride a bike, something that is quite challenging usually but within one intense week most kids had got it down!!  This organization was started by  a local Mom who had a son with Down Syndrome.  At that time there wasn’t a lot of support in the area so she started a group herself!  It has flourished over the years and we are all so grateful for it!  Many other local groups have started up around the country so it is good to search online in particular to find a group near you.

On a National level the NDSS (National Down Syndrome Society)  have masses of resources and information for parents along with 350 local affiliates serving their communities and over in the UK the Downs Syndrome Association has over 111 regional affiliated support groups (and some darling pictures of little children with Down Syndrome on their web site! )  Down Syndrome no longer carries the stigma it once did and instead is accepted and indeed celebrated in ways that could not be imagined in years past. Today’s families with Down Syndrome children are so very fortunate to have such a great deal of support available to them… make sure if you or someone you know could use the help that you make the effort to find it.  The friends you will make and the support you will gather will see you through the years and make life so much easier.


2 comments on “Getting the help you need.

  1. KDM
    September 2, 2012

    This is amazing! There is so much help available, but so often we don’t know how to access it. I have a daughter with autism, and it took me a long time to figure it all out. I am still figuring it out, but I’ve accessed a lot of services because of information from other parents. It’s wonderful that you wrote all this up as a resource to others!! :)))

  2. Pingback: The Next Generation of Thought | In and Out of Weeks

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This entry was posted on September 2, 2012 by in Bea Spiritual.
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