Saturday, July 25, 2015

Pumpkin 9 Months

Pumpkin is nine months! She's been out as long as she was in and fills life with all kinds of crazy fun. She is desperate to walk and just over two weeks ago she pulled herself to standing which socked me since she hadn't even begun crawling. After all our therapies, I was determined to get her to crawl first and so we repeatedly placed her on her tummy. Being the bright child that she is, she sit herself up and proceed to whine until the kids responded by getting her the toy she wanted. I had to put a stop to that and created a no toy zone with her in the center. Whining was ignored and slowly she began to test out her knees, lunging as much as possible to avoid the hard work of traveling. Eventually she figured out that crawling wasn't so bad, and kept her pretty little nose from too much bruising. She's picked up her speed just within the last day or two and I have no doubt we will have regretted making her mobile all too soon!
She has the best smiles. Our favorite is when she purses her lips and smiles with her eyes, it's as if all that remains in a tiny heart for a mouth and her big shiny eyes like an Anime character.
She yammers at kent and I all the time, her tone and expressions communicating so much more than words could do. This shot was taken at Costco where the other children around us complained of her noise level. Apparently Isaac wasn't sharing his ice cream fast enough for her liking. All this yammering has been a huge motivator for Eli as he feels the need to mimic her and generate as much noise as possible When in the presence of just her siblings she prefers to observe quietly while smiling at their antics.

Two teeth erupted just a week ago and she has tested those little choppers already on anything within her grasp. While I will miss the gummy smile, I'm excited that meal times will get a little simpler as we dispense with the purees.
With summer at it's end, this little girl will have me all to herself for all the snuggles she can take. I'm so grateful for this 'bonus baby'! Time passes all too quickly and before I know it my baby will be a little girl. I love you pumpkin!

Thursday, July 2, 2015

NDSC Conference Arizona 2015

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!