National Down Syndrome Congress held its annual conference this year in Phoenix. I was thrilled when I heard the news and planned on attending despite the crazy month that June was. I loved attending the classes and learning so much about Down syndrome. Everything from insights into major research that the extra chromosome gives, to speech in all its complexity and the latest and newest in tools and tech to help our children. I could tell that my Mommy brain wasn't as quick as it use to be back in my college days but education on any subject always adds a spark to the wonder of the world around me. The best part of all had to be the people. I loved meeting other parents, laughing at our kids and their latest antics, feeling the instant empathy and pride in being a parent of a child with special needs. Then there were those with DS themselves. Little ones who took off running, giggling as their parent yelled "freeze," in a vain attempt to stopping the chasing game. I loved the twinkle of mischievous eyes and some of the teens played pranks. Then there were the frequent squeals of joy across rooms of those who only see each annually, girls from different families but look like blood sisters. Others who were adults, self advocates for all with DS who had booths selling their products or art, glass work, clothing, food. The 'successful' ones who had not been pigeonholed into the old stigma of 'Downs'.
An amazing device that creates rhythm and sound simply by waving hands between the sensors. Boys were particularly attracted to this as they 'rapped' out some cool sounds to music.
Bikes for those who's core muscles can't ride safely but want the freedom of travelling. They locked up the bikes since there were many riders racing around the booths riding faster than they had ever before.
One boy struck me in particular, his father was Asian, his mother Caucasian and he looked like a teenage version of my Eli. I overheard their conversation as we fell into the river of people leaving class. He desperately wanted to go to the pool and was tired of classes. His mother told them they had one more errand to run before he could meet up with his friends and in such typical teenage fashion he rolled his eyes and said, "by then all the hot girls will be gone, Mom!" I had to laugh as the debate continued about how the conference was to educate him on self advocacy and independence and "like that will ever happened when you never let me meet someone .... Well this is me advocating for myself Mum!" They're really not so different at all and heaven help me the day my little man turns his charm on girls!!
The gal on my right was the winner of
Miss Amazing for Arizona. It's a pageant for those with special needs who are invested in their future and giving back to the community. The gall on my left married her sweetheart, Jared (also with DS) While she recently lost him in a tragic car accident, she remains to me the first story I had read of heard of that gave me a vision of the possiblites for my son.
I had Leora with me since I was still nursing her, which makes me a DS magnet. Everyone wanted to hold her and love on her. This gal, in her teens snuck off from her mom and introduced her self and begged to hold Leora while I ate lunch.
Someday we hope to attend with the whole family. They had sessions and activities for siblings of those with DS, they had classes for those with DS leading them to understand how they can advocate for themselves, there are kid camps so that parents can attend classes undisturbed. Some of the sessions welcomed children so they could demonstrate teaching techniques, all of it was such a family friendly educating environment, one that I would love to be a part of again. How I love the family that Down Syndrome has bought us!
How I love this little man!
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