We brought Claire home from China shortly after her fourth birthday. We knew she had a cleft lip/palate and was a little small, but we were not prepared for her actual condition. They handed her to us weighing only fifteen pounds, her hair was shaved off, her teeth were black, and she smelled like a little homeless person. She was so dehydrated and malnourished, that she didn’t even have the strength to stand. Her color was horrible, and she was grinding her teeth. She couldn’t talk or walk. We had to teach our four-year-old how to crawl and eventually to walk. She has since been diagnosed with autism, ADHD, anxiety disorder, failure to thrive, severe global developmental delay, and low IQ. She is still completely non-verbal and functions at the level of a one year old. She is in our local public school and we are working to get ABA therapy back (lost it due to a job loss and loss of medical coverage). She responds really well to the intense ABA therapy. She does communicate in her own way to us. She is very busy and active and needs supervision 100% of the time unless she is in her room, that we made safe for her (and she loves her room). We did the trial on the NovaChat at Ability KC and she did really well with it. We are excited to give her another avenuefor communication.
Claire had a rough start to life…being abandoned by her birth parents and then spending her first four years in an orphanage in China where she was severely neglected. We were able to adopt her and bring her home to Missouri at the age of four. When we received her in China, we quickly discovered the severity of her neglect and observed that she could not walk or talk. She had been left in a crib for four years and didn’t even know her Chinese name. Since coming home to the United States, she has made great physical gains. She has endured many surgeries to close her cleft palate as well as having ear tubes placed, dental procedures, and abdominal interventions. Because of her cognitive disabilities, surgery is very difficult for her, but she has recovered well, time and time again. With hard work and the endless support from her whole family, she has learned to crawl, walk, and so much more! Learning new skills is something that comes very slowly for Claire. She must do something MANY times to master a skill. As a family, we have ALL had to learn how best to reach, teach, and encourage Claire.
Claire is a very happy little girl but has many daily struggles. We are excited to see how the communication device will open her world up and enable her to “talk” to others around her. We see it as giving her a voice. We have taken her to speech therapy for many years and we have tried many interventions to create communications for Claire, and we are just thrilled to be able to have this very effective way to communicate with her. When we saw her use the “talking board” at the therapists’ office, it was incredibly emotional to “hear her talk” to us and be able to hear her express herself “verbally”. For most, this is a daily occurrence with their child, but for individuals like Claire, having this opportunity to communicate is HUGE and LIFE-CHANGING!! We can’t wait to see and “hear” what she has to say to us! As her mom, I desperately want to know what her favorite color is! I want her to tell me her favorite foods, tv shows, and I even want to “hear” her tell me what she DOESN’T like or want! For now, at the age of eleven, she only points and brings us objects as a way of communication. We are excited to give her another way to communicate with her peers and teachers, for her to express herself with the whole world around her. We can imagine that she may feel isolated due to her limited ability to communicate with others. What a gift to open that world up for her!
We can’t thank you enough for your consideration to help our family obtain this communication device for us and our daughter. Our hope is that someday, in the not too distant future, she can thank you herself using her new device!
Claire is silly! Most of the time she is happy and energetic! She enjoys typical activities that other children enjoy. She loves to play in swimming pools, jump on her trampoline, go for walks, and ride with the windows down and feel the air on herface. She LOVES cotton candy and the TV show “Little Baby Bum”, which highlights nursery rhymes. She loves loud music and feeling her dog lick her face. Her belly laughs will raise anyone’s spirits! She has the most expressive eyebrows and facial expressions…they talk and communicate more than you could imagine. Eye contact for Claire is rare but has been getting better. When she does make eye contact, it is amazing, and she seems to look deep inside of you. She is also very active, but if you can get her to slow down, she is a good little snuggler.
If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate
Thank you for joining our #inclusionrevolution
