Angels in Action – Krista’s story
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 eliminated 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!
5. At 5 o’clock sharp every morning, Krista liked to crawl out of my bed and venture off to her play room where she’d play with blocks and just adored taking things apart. During this play time, I would get down on the floor with her, grab a block, put it near my mouth and just repeatedly say “Mama”. The toy was used to bring her attention to my mouth, a technique that I learned while researching the Son-Rise program. This developed into me singing “Mama” over and over again and pretty soon my girl was saying “Mama”; so I’d check in with her daily to make sure that she still had “Mama” down pat and I then moved on to Dada and Baba etc… Some words came very easily and some did not; but I remained grateful for every word or approximation that this angel girl could produce, never giving a second thought to the ones that were really tough for her. Always referring to her speech as “developing”.
6. Through Glenn Doman’s book, What to do About Your Brain Injured Child (Brain injury in this context referring to any condition affecting your child’s cognitive ability). I learned that I should listen out for different sounds that she would make; for example, many babies will babble “mmm”. You catch the child saying “mmm” and you sit him down and say, “I have noticed that you can say “mmm”. Now we will take that “mmm” sound and it will mean Mama”. In this scenario, every time you hear the child babble “mmm”, you will quickly reinforce this by saying something like, “You said Mama! I love it when you say Mama! You called me and I came!” My Krista is very high intensity and responds very well to intense, animated and even loud praise, so this method has proven very effective for us.
7. Good probiotics to clear up yeast in the gut and to help to heal Krista’s gut was essential!
8. Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial.
9. We used MB12 shots with much success in Krista learning to string together longer sentences.
10. Lastly, in recent months, Lizzie talked me into supplementing with a fish oil that is specifically formulated to aid in speech development. We saw great results; I learned quite a bit about therapeutic dosing of fish oil at Integrative Nutrition where Dr. Sears of The Zone Diet was a guest lecturer and huge advocate for this approach. From this, I learned that Krista needed about three times the amount of fish oil than what is recommended for general health in order to be able to see an increase in ability for speech.
My determination for Krista to learn to speak started when she was a mere baby; she is now 10 and I’m still learning and remaining open to safe and effective ways of helping her in the area of speech; as well as, many other areas of her life that will help her to become an independent young lady.
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech thing as I was or you feel like “oh had I only been that determined, maybe I would be hearing my sweet Angel’s voice”. Let me say this… DO NOT feel that way! There was something that seemed out of reach for your Angel that you were able to help him or her accomplish that I may have not been able to help my daughter to accomplish. We only have so much energy to expend in a day; I chose to expend it on speech. Another parent might be more consumed by helping their child to gain the ability to walk independently; maybe you always envisioned your angel riding a bike or reading, whatever it is, I hope our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of yours, and more importantly, your Angel’s dreams!