31 for 21: Speaking for awareness [Down syndrome, local support group, Kiwanis]
Posted Oct 23 2010 6:52pm
Thursday I had the privilege of speaking for the O’Fallon Kiwanis Club at their lunch meeting. I was asked to speak to them about what our county’s community group ( StC ) of our metro DS association ( DSAGSL ) does, as well as sharing our family story. It was great timing with DS Awareness Month upon us, of course.
I was honored to be asked, even though the president of the club—who did the inviting—happens to be a certain female sibling of mine. And it doesn’t hurt that I have a brother in the club as well. This kind of nepotism can be a good thing.
So I prepared a speech, made up a collage (above) VERY quickly in the middle of the night before (because apparently I didn’t plan to do a handout until the last minute), and after beefing up my confidence with an amazing Bible study lesson Thursday morning, Braska and I headed to the restaurant. '
Yes, I took my own personal visual aid.
I had also asked the interim executive director of the DSAGSL to come, to give some credence to the presentation and to class up the whole thing. I’d not had the pleasure of meeting Amy prior to this, but I’d heard great things from several people. And for her to take on this transition time that’s happening lately, that is not for the faint of heart. She did not disappoint! I’m definitely a fan.
The presentation went well, the Kiwanis asked good questions and were wonderfully gracious and friendly. I was a little nervous at the beginning, but I felt comfortable as I got into my little speech.
Of course I went the route of writing my entire little speech out instead of just doing outline, so as not to let myself start rambling and get distracted from what I wanted to say.
Overall, I was pleased, especially since it was the first such speaking situation in quite a few years for me. But it was a great one to encourage me to get back into practice. I enjoyed the whole meeting quite a bit. And afterward, Amy and I were able to chat a while, which was really nice.
Braska was a champ, napping for a bit on her auntie and then her uncle, but she charmed just as I knew she would. She even shook hands with a few people, saying, “Nice to meet you.” I knew that fun little nicety that we taught her would come in handy.
Here’s a few snippets from my part of the presentation…
There were a lot of difficult periods during those first few weeks. I had a hard time dealing with the combination of postpartum issues, emotional stress that comes with having a new baby in the hospital long term, and trying to learn this new way of life that goes with a diagnosis of Down syndrome and heart defects. There were some supports in place in the hospital as well as in the local Down Syndrome Network of Champaign, which is very active and an excellent resource to parents there. But this journey is one that each family has to figure out and adjust to in their own way.
But don’t think that I’m complaining. Let me tell you a little about my daughter... She has been the easiest child to raise thus far, though I admit just recently she’s decided to have a bit of an independent streak that’s been a little challenging. But that’s actually good to see in her development. Braska is a very sweet, generally happy, little girl who loves her Mommy and Daddy, USUALLY her little sister, and even her dog. She has friends that she loves to play with and asks regularly to go to “Jack’s house” to see her best friend, Jackson. She has the best giggle, and can hug the stress out of me like no one else.
She can walk, talk, play, laugh, color, and say all her numbers as well as count to 20. She can identify all the letters in the alphabet, both in order and randomly by sight or by sign. She has been signing since she was about 9 months old and knows well over 100 signs for words. She knows her shapes, colors, and animals, as well.
Some of the activities that the StC group is hosting in the next few months include a trip to the pumpkin patch for the whole family this coming weekend, our 2nd annual Mom’s Night Out event at the Painted Pot next month, playgroup dates—both on weekdays and on weekends—for birth through preschool and for ages 5-12. We will be having a family event at Jump 4 Fun, as well as a seminar on how to set up a special needs trust and a workshop on school transitioning, from preschool to kindergarten or elementary to middle school. This is just a sample of what the StC group organizes during the school year.
Integrating into a community of new people while dealing with the changes to our life plan that can happen following a diagnosis of DS can be very overwhelming.
The StC group is truly a blessing. The needs that are met through the DSAGSL and specifically our local StC group are varied, but they are all important.
My passion at this point in my life is to help others through some of the more difficult times of this journey. If I can reassure someone that it’s not as scary as it seems to get this diagnosis, or if I can help a new mother connect with others who know exactly what she’s going through, it is very rewarding. These are some of the goals of our StC group and of the DSA.
Thanks to the Kiwanis for having us. It was a pleasure to get to meet you all and to share our mission with you.