Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with Angelman Syndrome . Written by the families , we join in celebrating the abilities no matter how big or small . We believe it is important to inspire everyone with these real stories of our endearingly termed ‘ Angels in Action ’.
Possibilities abound when we have a vision ! By Karen VanPuyenbroeck of Illinois Angel Mom to Krista 10 years old , AS UPD
When I was asked by our Editor In Chief , Lizzie Sordia , to write a piece about Krista ' s abilities for this section ; I asked myself , what were my burning questions about how to develop abilities in my daughter ; and for me , I just really wanted to figure out how I could teach her to speak . I knew that there had to be a way and I obsessed on this topic for hours , days , months and yes , even years . It took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my angel to speak too ! I wanted to know how it was possible ? And the big lesson that I learned from Richie ' s mom , Dawn was that they first believed that he could develop this ability and so did his therapists ! From that point on I developed my own belief and elimi nated therapists who did not support my vision for my daughter of verbal communication and unfortunately for me ; this meant that Krista received no speech therapy for a time and mom became her therapist with the help of a program called NACD . Through NACD , I learned that an unskilled parent , who was willing to learn how to implement therapy , who would spend many hours per week implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who could only spend an hour per week with my child and who did not share my vision .
Today , at age 10 Krista speaks over a hundred words and has quite a few phrases , her speech has been referred to as " functional " by her school and by the last two speech therapists who have evaluated her . Krista ' s favorite and most consistent phrase over the years has been " I love you " and if those were the only words that I had ever heard spoken from the lips of my angel , all of the energy that we have put into her healing program would have been worth it and I would do hundreds of times over again .
Here ' s how we did it : 1 . We cultivated belief ! I have to credit my husband Steve for this . This angel Daddy always knew that his girl was A-ok . And to my kid ' s Nana who said simply " if you want her to speak , we will teach her to speak ". Because Nana has adult twin boys with autism as a result of Urea Cycle Disorder ; I knew , that she knew exactly what she was talking about and so I believed her . Krista ' s older siblings played an essential role ; by always speaking to her as if she could speak back .
2 . I tossed out any ‘ Debbie Downer ’ therapists or health care providers in her life ; at times , this meant that she did not receive certain therapies at all ; but again , I had come to understand that it was better that I work with her with all of my love , support and belief than it was for a professional who didn ' t see things that way .
3 . I only shared my vision for my daughter with people who believed in her ability ; well meaning friends and relatives may want to help you " accept " your child ' s limitations . I finally came to understand that this was their position and realized that pushing the issue was only baiting them into an " oh you poor dear , it ' s sad that you have not come to terms with your child ' s disability " type of lecture .
4 . Gluten and Casein free diet baby ! Thanks to a miraculous accident ; I bought the wrong Autism book at Barnes and Noble called Unraveling The Mystery of Autism by author , Karyn Seroussi . This started us on an amazing journey that lead us to the wonderful discovery that by removing these offending proteins my daughter ' s health would improve drastically and as a result of her improved health status , Krista gained many wonderful skills ; much too many to mention here but improved speech was definitely a biggie !
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