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!

Immeasurable Success

Keila blew us away when she chose to compete in a swim meet! It wasn't so much how fast she swam, or which heat she was in - it was that she even chose to do it at all. The level of anxiety that she deals with is hard to understand. The constant battle against those immobilizing emotions is exhausting let alone the day to day living. She's worked so hard to understand what she is feeling, to learn to vocalize it and to find a space to nourish "being still".

This is the workbook we've been doing this summer and has some real practical ways of dealing anxiety. I highly recommend it to anyone who has an anxious child.

When summer came we chose swim team as a way of practicing the skills she has learned to fight her anxiety. It was done in the hopes of helping to prepare her for full day kindergarten this fall. I didn't expect anything more than going to practices daily and for her to swim the full 25m. She's done that and done it well. There are no more tears at the practices, no more screaming or meltdowns when asked to do something. She is physically exhausted but over the last few weeks she isn't as emotionally drained. She was more than capable of swimming all the strokes the full distance so it was suggested she compete in a meet.

Initially she declined, the pressures of performing in front of strangers can be overwhelming. one day she announced she wanted to compete in the meet the following day. In the few hours before the meet I could see her anxiety building, finger sucking, picking at her skin, etc. It wasn't too surprising when she hit a point where she simply melted down. After a good cry we talked and she told me she had promised her coach she would swim that night. Knowing how hard this was for her I simply said that promises were important to keep but that I would respect whatever choice she made. That was that, and she went without further fuss.

I am so proud of her on so many levels, first that she kept her word to her coach. For a five year old to do that is a good statement of her inborn character, especially when there were so many reasons she could have made to back out. Second was that she handled her emotions well, no one would have known how scary it was for her. Finally she swam, did it well and competed a total of 6 times. She is proud of her ribbons she has won.

We also did some summer art classes. She is extremely critical of herself and makes perfection her never ending torture. I hoped that with the art classes she might begin to see that there is no real standard of perfection and also find a new outlet for some of her emotions. With the patient tutelage of Shannon Baker and her own persistent personality she has gone from this

This is actually a self portrait from her workbook, it shows her with all her worries crowding in on her.

To this! Its a self portrait of her in Egyptian garb! She is proud of her work and we have tape most of it up on her bedroom wall. She always starts each class a little anxious but she always comes home happy and pleased with her work.

This is her chameleon who is camouflaged against the sky.

While the idea of full day kindergarten looms over her, I hope that this summer has given her a glimpse of all she is capable of. She is a little powerhouse and just can't see it with all the lies her anxiety tells her. Sometimes the greatest successes are fought in our hearts and minds and are immeasurable by world standards. I'm so proud of her!

Father's Day

How we love our Baba! He always adds a little excitement into our day when the afternoon hits a lull and moods are at their worst. Once we hear the garage door someone rushes over to 'surprise' him and we all get a round of hugs and kisses. Without him we would not have our evening wrestling matches or wheelbarrow races which wear them out nicely. To celebrate him there were homemade crafts and a card along with two gifts.

We could not imagine life without him! Happy Father's Day Kent!

The Big 4-0!

There something about the birthdays that end in zeros, it makes you realize how quickly time is passing. Then when things are phrased in reference to a century (such as: you're nearly half a century old!) well then you just want to keel over and die! Most birthdays I don't bat an eye, but this one was a little harder to ignore. Maybe it's the way tendonitis has me nursing my shoulder, or the fact that my post partum body is suddenly less willing to recede back to its old size - I suddenly do feel older.

Kent and I once had an interesting discussion of which we'd want more, to lose our mind as we age or our health. It was a harder question to answer than I originally thought. To have my mind but to be trapped in a incapacitated body is just as tortuous as having my body with no mind to fuel its endeavors. Then again with my four children, I'm currently in danger of losing both so there may be no need for worry on that front!

We celebrated it the weekend before since I would be at the National Down Syndrome Conference the days following it. Kent surprised me with the largest present I have EVER received in my whole life. He had been planning it for some time and through the extra funds he received doing pharmaceutical surveys, was able to buy me three Le Creuset pots! He knows me well enough to to know I have great difficulty spending money on myself (except in cases of quality food!) and many of my pots and pans were dented and in sad condition. Some even pre-date our marriage and while ugly were still functional in my book. But I have to admit I cringe when guests arrive and I serve my food. it was definately a huge surprise and while I'm a little galled at the cost, I'm loving the quality and the flash of color that brightens our meals!

The coldstone ice cream cake has become a tradition one that the family doesn't mind sharing in. Kent also got me roses which prompted Keila to ask if Baba can bring her flowers on her birthday too!

It's been an amazing 40 years and honestly life is good, especially when I have this crowd to live, learn and grow with!

Isaac's Baptism

On the morning of Saturday June 13 we had the joy of attending Isaac's baptism. It was wonderful to share the day with the Walker family since we've become friends and can relate on so many levels. It was a quiet simple day, but one filled with significance and the Spirit.

Isaac spent the hours before helping to prep the baptismal font and meeting room. He had some time to walk the Phoenix temple grounds and talk with Kent importance of the covanents he would be making. In so many ways he is an old serious soul and has with eagerness 'taken on him the name of Christ' and lareday been a wonderful witness of our Savior. It shows in how he interacts with other and how he tender hearted enough to recognize the feelings of the Spirit.

We were joined by Helen Young, our adopted grandmother who graciously gave Isaac a gift. Our bishopric was there, Levi Esquira, Steve Welker and Jim stone. We were grateful for their attendance as well as for the family and friends of the Walkers who son, Jack, just recently turned eight as well. Their family has become close friends of ours as we've related on so many different levels and our sons are such good friends.

The night before Kent and I had written our testimonies of the Savior Jesus Christ in a journal to Isaac. We hope it will become a keepsake for him as grows and matures in the gospel. It gave me an opportunity to think on all that has transpired for me these many years. Just over eight years ago, after so many miscarriages, feeling very much alone and abandoned - I could not imagine this day Would come so soon. It amazes me what God can do when we turn over our meager offerings and our will to Him. I'm profoundly grateful for the family He has blessed me with and for the extended friends and family that have come into our lives. He gives more than we can imagine, especially as we 'keep his commandments and always remember him ... That we may have His Spirit to be with us'. My prayer is that Isaac will see this in his life for himself and come to love the Savior as I love him.

So proud of this growing man!