Beautiful Mary with her little family 
Mary Nguyen Silsbee, 1976-2013 Today my heart is heavy with sorrow for the passing of beautiful Mary. Mary was Ben's therapist for a spell when we lived in Pennsylvania. She was so influential that we never forgot her and kept in contact with her even after we moved to Minnesota. As some of her friends wrote on her Facebook wall, "heaven gained an angel" but we lost a dear friend.Here is a glimpse of Mary's goodness and her care for others, in the following Facebook conversation I had with her only a few months ago... Even as she was so sick, she always took time to be kind, thoughtful, helpful.Mary, the autism community lost a great advocate when you left this earth... We love you and will never forget you for the gorgeous lady, inside and out, that you are.Love always...
The potty training entry really made me tear up. It was so amazing how he really was able to hear you and be in touch with your emotions. There is just so much to him that I hope he will be writing his own entries some day about how annoyed he was when his TSS took away his favorite stick;)
You really are his best advocate. His mama tiger. I love how you can be so sweet and gentle yet not take any crap when you mess with your kids. Such a great combo. I am sorry that so many services have been cut. It seems so unfair but it sounds like you and Keith are doing everything you can. I am so happy to see that while you fight so hard for Ben, that you also continue to do things for yourself, things for your girls and hopefully still manage to have time for you and Keith. I know it's not easy to juggle all of that but I see some families become so consumed with the world of Autism that everything else gets neglected. Once again, thanks for being so welcoming. Since my diagnosis, I help almost daily. I have people in my house daily. They are so great and helpful but it's not ideal. I wish they didn't have to be here and I am sure you sometimes felt the same way. I really miss working. I recently consulted with an old client whose child has high anxiety especially during these teen years. It felt good to try to help. If you ever have questions, I don't know if I will have the answers but I could certainly try. When reading about Ben's little beanie baby buddies- which was a great idea along with the cargo pants idea- I started to think about more alternatives. I have no idea what will work with Ben and what his interests are but these are my random thoughts. Does he like pictures or taking pictures? If he does, maybe he could have a fun photo shoot with his stuffed animals and make a book of his pics with a little sentence about each friend that he can bring with him instead of all of his buddies. You can do a homemade scrapbook with fun stickers or do a shutterfly type of photo book since he sounds computer savvy. OR... I am not sure how many animals he carries with him but maybe he can pick 1 or 2 a day and make a schedule that Mickey comes Mondays, etc... Maybe this isn't even an issue that needs to be addressed but just thought I would share my random thoughts. Also..regarding his feelings and emotions, has he ever used social stories. Since he likes to read, simple but special little stories about things that may upset him and ways to help feel calm may be something he likes. I will stop. Sorry! Just ignore if these sound ridiculous. I just wanted to say " hello"! Please tell the family I think of them often and am glad Facebook keeps me updated. I am not frequently on it but I try. Hugs! Mary- May 4
Mary, What a gift to hear from you this morning! As usual the weather is so cruddy here (it's freezing, I kid you not, like 30°) but your words make my heart positively glow! I know you are so busy so I am so touched that you took the time to write! I hope that you are feeling OK these days... What a trials it must be, I cannot even imagine... You are such a warrior! All your ideas are soooo good! As always, I have to say! I remember as if it was yesterday that day you took the stick away from Ben and put it in the trunk of your little green Subaru I wanted to include that milestone so bad and then, poof I forgot, my thoughts ran away with me... I still might yet, I am not done!! It certainly was a momentous occasion worthy of note and I have not forgotten! These days Ben is only allowed to carry one small stuffed animal, the mouse from "if you give a mouse a cookie" book. If he gets carried away, he can "get in trouble." He has a whole collection but he has to take care of them at home, so they stay in bed at home We think we have it under control... but you know how that can quickly change! I so hope that your little family can grow up in peace. It is so hard... But the Lord doesn't give us anything we can't handle, don't you just wish he didn't trust us so much? Your little girls are so gorgeous! Just like you! Again, thank you for your kind words and thank you for the invaluable service you provided to me and my family, we love you!! God bless you and yours in your own tremendous trials, XO Sophie PS: if you ever think my ramblings in the blog might help an autism family feel free to share- May 6
Sophie - so happy to hear that things are under control with Ben and hoping it continues. Thank you for your kind words. Your strong faith is so inspiring. I will be sure to pass your blog onto anyone that comes to mind. Hugs!! Mary
Monday, November 11, 2013
"Not goodbye, but see you later" to an amazing friend
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