Last Wednesday was our final meeting for our DS group put on by
ICDSP. We only had 6 weeks together, but it gave us the opportunity to meet other parents of babies with Down syndrome and learn a lot more about what we can do to help our children along. I was only able to go half the time, which is an unfortunate side effect of my wonky schedule.
As it was our last day together, we cleaned up some odds and ends and the babies were evaluated. I also brought the camera and quickly whipped off a few shots. I would have liked to get more, but it was near the end and my two were getting fussy, so I only have a few (we were also missing a member as well).
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I can stand! Yay! |
First of all, Zoe has a new trick. Actually she has two, but I haven't gotten a shot of her sitting yet. She can pull herself to a stand using whatever is handy (my pant leg, the table, my hair... in this case it was Daddy's hand). She is very happy with it (and we are scared).
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Wyatt is evaluated |
There were 6 babies in the group, ranging from Wyatt at 7 months (and Emma who shares a birthday with my twins) to Nyal who was only six weeks old when we started. It was cool to see other Moms at the start of their journey and listen to similar stories, such as time in the NICU, feeding difficulties... stories involving an NG tube. Although we shouldn't compare our children, there was a lot of that as well. Who had what symptom? How had the extra chromosome manifested in the other children? There was a lot to learn from one another and shared experience is truly important.
Our group leaders hosted and evaluated every week. Through them, we learned to put our positioning exercises into practice and recieved a multitde of helpful tips on how to improve the lives of our children. (some of which have been shared here over the course of this month). There were special guests, such as an OT and a speech therapist who laid the foundation for work later on.
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Wyatt exercises |
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Wyatt and Emma |
Wyatt much prefers to be without pants it seems; at least that is what he seems to be demonstrating by only playing with his feet when he is without them. Linda showed us that with a simple towel roll we could encourage Wyatt to continue to grab his feet and develop his leg, arm and abdominal muscles as well as improve his body awareness and sensory input. That's a lot of responsibility for two little feet.
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Gotcha, Emma! |
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Hopefully we will see everybody again, if only to check in once and a while. As was to be expected with a random sampling of children with Down syndrome, we all face very different challenges. One child has already had several club foot surgeries, one had severe choking issues while eating, one had digestive issues that rivaled the little girl in the exorcist... etc. The early days after a diagnosis of Down syndrome can be challenging. There is a lot of adjusting that everyone has to do that is unique to each family. It was wonderful to see each parent become more skilled with their child (including us) as the six weeks progressed. I'm going to miss our time together. Hopefully we can make good on the exchanged lists of information.
Many local organizations offer groups such as this one for new parents. I would highly recommend this to any new parent of a child with Down syndrome. Just as
Mother Goose helped me in the early days to become closer with all my babies, this group helped both of us to become even closer with Wyatt as we addressed his specific needs. We have seen distinct improvements after employing some of the techniques we learned there. Armed with these new tools, both of us feel encouraged. For that alone, I cannot thank the group enough.
Wow! What a fantastic group and great idea for new moms. I have a son with DS, who is now 4.5, and I definitely could have used a group like that. I live in a small town in Saskatchewan which unfortunately meant I didn't have the same network as yourself. But thank goodness for the Internet and online groups! The early months are a challenge as you say as you are adjusting to your new normal and dealing with health issues. I am very happy to say though it does get easier and I often find that I forget my little guy has DS, it's just one part of who he is and I don't harbour the same fears that I initially did when he was born.
ReplyDeleteThank you so much for sharing your story. :)
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