Blog #66~Taking the Leap to a Support Group
“I can’t make it there. I have two boys that are 19 months apart under the age of two.”
“I have it under control.”
“We are okay. There is no need to reach out to the local Down syndrome support group.”
“I have no energy to get out in the evening to make it to a meeting.”
Those are some of the excuses I have used. It’s hard to take the leap to a support group. Over the years friends and teachers have offered names and phone numbers of other parents whose children had Down syndrome. I found it difficult to make those cold calls as well. It’s not easy to open up and be vulnerable around people you don’t know. Every parent handles the diagnosis of a child’s disability in their own way.
Eventually I did reach out to the local Down syndrome support group. What I found was a community of individuals who had been on their own roller coaster of emotions. They had dealt with uncertainty and doubt. They had experienced anger, fear, worry, sorrow and guilt. These parents offered encouragement and reassurance. In addition, support groups can provide a forum for sharing feelings and concerns as well as providing information, advocacy and resources available. See more information at: http://www.ndss.org/Resources/New-Expectant-Parents/Finding-Support/#sthash.dTRJb4bF.dpuf.
When we moved out to the east bay area outside San Francisco we didn’t know anyone. The Down Syndrome Connection: http://www.dsconnection.org provided resources, after school classes, social events and an invaluable kinship.
5 Year old Nick with his buddy playing in the Challenger Baseball League….
Nick at the Down Syndrome Connection Picnic 🙂
Before we relocated to the Chicago area twelve years ago, the local support group called National Down Syndrome Association, NADS: http:// www.nads.org, provided a list of parents that lived in the area which we were planning to look for a home. These parents were so open to answer my questions about school districts and gave me emotional support even before the moving truck had pulled up to our house. NADS continues to provide services and has been instrumental in making a difference with Nick having the second diagnosis of autism. Within NADS, there is also a sub-group called “Down syndrome and More,” which holds retreats for families dealing with a second diagnosis.
Nick at the NADS Retreat….. 🙂
Music Therapy at the NADS Retreat…..
These days there are multitudes of online support groups and Facebook pages to reach out to. There are several Facebook groups specific to Down syndrome and autism. Be sure and check out my resource page for more. As a parent I have gone through phases where I thought I had things under control. When Nick’s body was raging with hormones during puberty he had massive meltdowns. After talking to a few parents whose children had Down syndrome also had autism, I realized the need to get help. I also quit being ashamed that I was a bad parent that couldn’t control my child. By reaching out to the support groups for assistance, I found out that I was not alone. It has made all the difference.
Help is out there, sometimes you just have to take a breath and make the leap. That’s what is in my noggin this week.