We drove together (because God knows I would not have walked up to a group meeting I have never been to completely on my own!), and hauled our ass..ets all over the park trying to locate the one place we hadn't walked past (surprisingly) where the group was meeting. I anxiously said hi and gratefully followed someone's directions about filling out name tags and then spread out a blanket among the rest of them and sat to picnic with my girl. I remember that I left that event feeling loved, and understood.
Overwhelmed by the schedule of therapies, work, and school, it was months (I think 3 months?) before I was able to make it to an actual weekly meeting. I went all by myself this time, inspired by a desire to attend the sign language class they were offering that Friday morning, and an unprocessed need for community. I pulled myself up from my bootstraps, and talked myself down from a panic attack as I walked alone up to a random Church building looking for the group. I walked to the wrong side and a Church volunteer pointed me in the right direction and I finally spotted a little sign: "First Steps - Club 21." I was so anxious about figuring out what I was supposed to do and how it all worked and when I walked through the door - I'll never forget it - Rachel (one of the volunteers) greeted me by name.
It makes me cry when I think about it. I was a stranger, and yet they welcomed me as family. I felt known, understood, relieved to be around other children who are like my baby, and other mothers who have walked the same path. My heart rested. This was home.
I left that meeting completely filled to the brim with love, and excitement, and courage. I tried to explain it to my husband, through tears, on the long drive home. My husband, my parents... they were excited for me, they were glad I had found this group to participate in... but the didn't quite "get" it. I invited all three of them to come with me to a meeting (individually), on their own terms, and waited patiently until each one of them found the right time for them to join me. One by one, I watched each one of them fall in love with this new family I had found in the same way I did. Somewhere along the way, I realized what had happened:
We had found our tribe.
These families know first hand what it is like to hear the doctors tell you that your newborn baby, "is showing markers for down syndrome," and to spend the first few days of your baby's life flooded by confusion, fear, questions. They, too, have fought for their child to have access for services and therapies to help them to overcome difficulties that often are associated with Down syndrome. They know the highs and the lows, the ins and the outs, and they want to stand there with us, and we want to do the same for them.
I feel so grateful to be a part of club twenty one - both in the general sense, and in the specific-to-this-organization sense. ;) I can't speak for ALL of the things they do/offer, but I would like to share the things I know about:
Weekly meetups at each age group from Birth (expecting mothers) into adulthood
First Steps (0-3 meet up group that we attend) provides OT, PT, SLP, and Sign Language Classes monthly
Twice a month parent education classes
Mom support/ Dad support groups
Siblings group for the typical (non-Down syndrome) siblings
Social outings for teenagers/families
IFSP (Individual Family Service Plan) coaching/training
IEP (Individualized Education Plan) coaching/training/advocacy support
And one last thing that I have to highlight because I think it is AMAZING:
Club 21 has developed, implemented, and administers a 3-day Teachers' training conference in which they present current, up-to-date research about Down syndrome, intelligence, learning, and education methods. They teach teachers how to better serve and educate students with Down syndrome! AND - they PAY the school district the sub stipend so their classroom can be covered for them to attend the conference! They have trained over 100 educators in over 50 different school districts. Think about the impact of a program like that!
Club Twenty One is founded on a principle of inclusion. Their mission statement is as follows:
Our mission is to provide the tools and resources that enable individuals with Down syndrome to be fully included in society. Our goal is for every individual with Down syndrome to have independence, access, and belonging.
I don't know about you, but THAT is a mission I can get behind. So, to support this mission, and give back to our tribe, we will be participating in their annual "Together Is Better Walkathon" to raise funds, and awareness. We're SO excited for this day of celebration and community.
If you would like to join us, you can find our Team page here.
You are welcome to join us for the walk which is Sat 10/22, and if you would like to donate to our team and help us meet (or exceed!) our goal. If you can't donate, you're still welcome to walk!
|Photo credit: ADVTR Photography|