18p- Families  


Marty Thompson  Print  

Our daughter, Grace, was diagnosed at age two weeks with 18p-. We were blessed to have found out so young so we could begin intervention early in her life. Our pediatrician along with our genetic counselor gave us medical information and introduced us to another p- family close to us. That was very beneficial to visit with them and learn from their experiences.

What worked for us:


Speech Therapy - She began at eighteen months and was diagnosed with apraxia at 3½ years. So that changed our approach on how to teach Grace to talk. She needed an oral motor speech therapist to teach her how to physically make each sound with tongue, lip placement. Since that time her speech has improved.

Sign Language - Her hearing is fine, but we knew speech delays were common and it would be very frustrating not to be understood. So at eighteen months we began teaching her signs. We took some classes on our own to learn, plus our speech therapist knew signs and used them along with words when working with her. She has a sign language interpreter with her in the classroom at school. The interpreter teaches her new signs for the subject areas. Although Grace does talk a lot and has a voice, it's not always understandable, so her interpreter is her "voice" when she signs.

Growth Hormone - Grace was found to be growth hormone deficient at one year and began injections. She is now at the 5% for height and 35% for weight. She will continue this until she reaches her adult height.

Currently, Grace is in 2nd grade, a regular class, doing the expected work with no grade adjustments. Her only support services are speech therapy and sign language instruction.

We are blessed by God with a happy, healthy and loving child who keeps us grounded in what life is all about.



 

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