Home » Down syndrome » (3) on the 21st: A Blog Hop

(3) on the 21st: A Blog Hop

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This monthly blog hop is a community project created by one of my pals Meriah over at With a Little Moxie.

Blog hops are a nice way to get to know some pals. And I tell ya….well see below for what I tell ya…

(3):

One truth (about Ds/our lives with Ds) It takes a tribe to raise a kid in today’s village.

One tip (information on something related to Ds/raising a child with Ds/or just parenting in general) Join the community. Lurk if you’re shy, but still join. Read, visit, comment. This community it is as diverse as the syndrome itself. What is an issue, a concern, a moment or milestone to celebrate and connect over is different for everyone. We are not all the same. And yet we are all connected by a little bit extra.  There are plenty of folks you’ll have things in common with and plenty that you won’t. There are families that will share your political, religious and ideological  beliefs and values and families that will offend yours.  And that’s ok. There is no one right or wrong way to share your story, live your life, or raise your kid. Share your life with others and grant others that same space.

I started reading when the Quail was a newborn and started blogging when she was 6 months old. I started blogging because I was repeatedly going to other Mommas on-line and asking them questions. For me, being new to this whole, “My kid has Down syndrome” thing- well I felt pretty shy about asking questions in person and talking on the phone. The amount of information available on-line though- well really- it isn’t just Holland or Italy. There is an entire world available out there. And what we need to connect over changes over time. When the Quail was itty bitty I wondered in general what our future would be like. Would she crawl? Would she walk? Would she talk? Would she be able to continue to go to a typical daycare? Would she ever stop throwing up daily? Would she have friends? Should we have another baby? How does the Quail’s Down syndrome affect Zuzu? Would she be included with our family, our friends, our school and community? These questions and the answers to them for me and for others change and there is just something about being around others that “get it.”

A couple of weeks ago we attended a camp that was put on by our local Parks & Recreation department at a YMCA camp. It was a group of families that had one thing in common. Someone they love has Down syndrome. These families and their backgrounds were incredibly varied. And yet, that didn’t matter. We spent time being together. Talking, playing and sharing. The director repeated throughout our stay- “No worries, no excuses.” It didn’t matter if the kiddos acted up or didn’t want to interact at all. We could do as much or as little as we were able. The point was the opportunity and openness. On the last night they held a talent show. Zuzu was confident she wanted to show folks how she hula-hoops. So she did. And as soon as she came off-stage to a round of applause, the Quail looked me in the eye, touched her hand to her chest and whispered emphatically, “Me.” The counselor sitting near us heard and asked if she wanted a turn up on stage. The Quail nodded her assent and repeated “Me.” I asked what she wanted to do and mentally ticked off a list of things I’ve seen her “perform”. We settled on her “singing” if you’re happy and you know it. This from my kid who, well doesn’t talk much. When they called her name she ran up on stage and stopped. She looked around and I whispered to Zuzu what she was supposed to do and to go join her. Still we could hear the crickets chirp as everyone waited. After a minute I said hesitantly, “She wanted to go up because Zuzu did. She wanted to sing “If you’re happy and you know it.” Could you all join in?” Happily and heartily a room full of families readily sang the familiar tune. And the Quail she cheered for them as her sister fed her candy. Then they skipped off stage ready to cheer for the next talented boy or girl. No worries. No excuses. Everyone just got it and went with it. As a parent, what a relief that feeling is. Sometimes you don’t know when you’ll need your tribe, sometimes you do. You just gotta join in and ask.

One photo

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6 thoughts on “(3) on the 21st: A Blog Hop

  1. Hello! Yes, I’m planning on hosting 31 for 21. Working on my blog post this morning actually 🙂
    So true about community! Loved the story about the YMCA camp and being with families who just get it!

    • Thanks Michelle. I meant to also come comment on one of your recent posts about classrooms. We live in the Upstate of SC and recently started the education process- and your post was super helpful- it validated what we had been told by others and is just information people need to know even if they are ok with a self-contained class. I think often people don’t even realize the fine print of what they are agreeing too- mostly because it won’t be spelled out. I know that is the case for us.

  2. I recommend lurking too–at least be aware of a good connection or group or three in case of emergency!!

    Love the camp story. We went to a local one here & it was also beautiful. Good way to get dads thinking & seeing moms are not overly zealous & worrying about the future. We face many similar struggles & challenges with our kids & communities. Together is better!!

  3. Good luck on the school process; I hope the process goes more smoothly for you and that you have a team who is more open to ‘change’ (if that is what you’re going to be asking for!). Did you attend the Family Connection Hope & Dreams Conference in Columbia earlier this year? I met a couple of moms there who have younger kids w/Ds.

    • I’m not convinced it will go smoothly- for exactly the reason you said- it’s change for them. It’s hard to even know what to ask them to do and they aren’t offering it up. We have the time and settings that we wanted though- so I guess we go from there! We did not go to that one! I wish we had. Do you remember who you met?

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