I'm asking for help so read all of this please...
About a year or so ago, I was searching high and low for some kind of support group in my area to attend for parents with children with Down Syndrome. I live in a small rural area and I had no such luck.
I have gotten so much WONDERFUL support online and so much advice and encouragement from people that I most likely will never ever meet. But I was still looking for physical bodies to talk with and share our families ups and downs and spend time with doing things with our kids together, and found nothing.
I read so many stories online of other people's experiences with support groups and I decided that I was going to figure out a way to get a local support group going in my town. I know there are not alot of children with Down Syndrome that I know and with the whole HIPPA rules I was having a hard time finding any other people in this area who might be interested in joining my future group. I still continued on and read up on organizing and planning events, how to fund raise, how to advertise, how to start with little or NO money, and much much more. One of the last things I had on my TO DO LIST was to contact our local Arc Branch. If your not familiar with the Arc its an organization that provides services and advocacy for children and adults with Intellectual Disabilities all throughout the United States. You can read about The Arc of the US here, and The Arc of PA here, and my local branch, The Arc of Jefferson County here.
When I contacted the Arc they said that what I was planning on doing was something they would like to get going in this area as well, they just couldn't find anyone to do it. I was asked to consider coming in and doing this with The Arc. Without understanding exactly what they did or who they were I declined because I didn't know anything about other disabilities, and I didn't really want to learn everything about them all either. It was all I could do to understand Down Syndrome. After some thought and prayer I realized that the challenges, the activities, the opportunities, or the lack of each of these things mentioned would be the same for all individuals and families dealing with a disability. I felt that God was opening a door for me that would provide me with the ability to get a support group off the ground much faster as I would have a facility to host the meeting, funding since they are a 501c non-profit group, they have an established client list already, and I have an "in" to finding and reaching out to other families who have a child or adult with disabilities. I took the position of Executive Director back in May of this year and haven't looked back since.
GREAT!! This was going to be a cinch. I would get a big group together, we'd have speakers, we'd have parties, we'd have informational discussions, we'd find an advocate to discuss IEP's, we'd do this and do that. The group would not only be for parents of children with Down Syndrome, but for anyone struggling with anything dealing with special needs. Sounds simple.
But now 5 months in, we truly don't have the participation that I expected. We have about four of us that have committed ourselves to this and attend monthly. I can't figure it out, seriously. Am I the only person who feels the need for a group like this?? Am I the only person who will make time for something like this?? Am I the only person who doesn't feel inconvenienced to find a babysitter for something like this?? Am I the only person who wants something in place for new parents as well as seasoned parents to come together and share our experiences? I don't understand.
I'm reaching out again to my "Cyber Support Group". How often do your groups meet? Do you bring your children with you? Siblings? Spouses? What type of activities do you do? Any advice would greatly be appreciated. I am not giving up by any means and I know it takes a year to get things like this established, but like I said already have so many things on my side and such potential to get the ball rolling, I'm just at a point that I don't know what else to do right now but to start physically dragging the parents to the meetings. Maybe a bribe?? LOL
HELP ME!!!!
2 comments:
I dunno, I think in rural areas often people keep to themselves. Either that or it's just so far to drive anywhere. I know that I don't attend the autism group meetings because they are 30 - 45 minutes away! Or maybe everyone is just so "busy" these days. There are 400 students in our elementary school and we're lucky if we get 15 people to show up at a PTA meeting (and we've only had 30 turn in the membership dues).
Keep at it though!
Hmmm. I have yet to attend a support group meeting and Eon is 9mos. Some of it is just bad timing...I've already got stuff going on. Some of it is lack of reminders. I think if they harassed me about it, instead of one email for a meeting a month away, that might help. I don't know. Sorry!
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