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.
~Teresa
Down Syndrome with a Slice of Autism 
Awesome advice T!
Thanks Ali, I was inspired to write this piece after meeting a mom this weekend who seemed lost and hadn’t reached out to a support group. Thanks for reading! 🙂
How would I find out about the “Down syndrome and more” sub group. My six year old daughter has both Ds and autism and I would be interested in this. I don’t know of anyone personally that has a child with both. I have plenty of Facebook friends but none in my everyday life. I would love to meet other families with the same issues. I live on Downers Grove. I don’t see anything about it on the Nads website.
I would be happy to pass along your name, information and email to the NADS Director if you like. Also if you are on Facebook, type in Down syndrome and autism and there are several groups there. The NADS group is called, Down syndrome and More Retreat Families. Let me know if you’d like me to pass along your information. 🙂
I hated facebook…. until I realized the vast resources for parenting my kid!! I now also set up a monthly Ds moms night out for the locals around me. I just post the event on fb and whomever wants to come, does. We usually have 10-15 moms come. It’s sooooo nice to talk to other moms who ‘get it’. Sometimes, however, I do get that sick to my stomach feeling when I realize that with Max’s dual dx, he really is soooo behind the other kids his age with ‘only’ Ds, and seemingly more difficult to parent. But the friendships I’ve made can’t be beat!
I agree with the reaching out for support bit. That is so important. My 1st daughter Abby has CP(different problems) and I found the 1st year extremely hard. That being said- it was fun at times. Like when she made sounds.
Are there groups for parents of children who have CP and Down Syndrome? Awesome post- I loved it.
Yes the milestones are much sweeter when they begin to make sounds, learn and grow. Thanks for reading! 🙂
On FB I meant. Tch.