June 28,2000
Update on Amanda
Amanda will turn five on July 29, 2000. It has been almost three years since she was diagnosed with Cri-du-Chat Syndrome. These three years have been both rewarding and trying. Amanda has made so much progress and continues to function very highly. She is talking in eight to ten word sentences and uses language as her sole source of communication. Her language development is the area where she has excelled the most. She knows most colors and shapes and counts to 20 and sings her ABC’s. Although her fine motor skills are weak, she enjoys coloring, painting and playing with playdough. Socially, she is still quite timid and prefers to play alone although will interact freely with her parents and big brother. She is almost potty trained, having a few accidents a week, mostly due to problems related to constipation. She frequently asks to use the bathroom and is beginning to go in and use it without assistance. Amanda has learned to swim on her own and is quite good in the water. She absolutely loves going to the pool.
Some of the things that have been most trying have been Amanda’s reluctance to engage socially with other children and her odd play habits. She seems to regulate her emotional arousal by tossing bark repeatedly or pulling the hair out of her stuffed animals and watching it fly away.She is in perpepetual motion and can be quite exhausting. Sometimes she uses her speech as a weapon, yelling at the top of her lungs when she wants attention. Potty training was a long and tedious task. There were days that I wondered if I could wash another pair of panties! These autistic type traits have earned her a secondary diagnosis of PDD, which is a mild form of autism. The good news about that is that it qualifies her for lots of intervention and it is paying off. In general, Amanda is very sweet natured and easy going. She rarely cries and is able to recover from any unpleasantness pretty quickly. She smiles all the time and is beginning to display a wicked sense of humor, such as substituting "silly" words for real ones, ect.
Amanda has received alot of early intervention in speech and O/T. This summer, we have begun a home program in collaboration with her speech and O/T therapists and teacher. The home program uses "Floor Time" and "Relationship Based Therapy" as outlined in Dr. Stanley Greenspan’s Book "The Child With Special Needs". This is an excellent resource for parents and educators on how to help children with special needs excel in intellectual and emotional growth. In addition to private speech and O/T sessions twice weekly, Amanda has a tutor that comes to her home daily to work on play and social interaction, since these are the areas of her biggest delay.
We fully believe that Amanda will realize her great potential and will
continue to make great gains. Although we don’t know how far she
will go, we realize we cannot predict that with any of our children and
therefore strive to take one day at a time. I encourage any parents
dealing with a new diagnosis of CDC to never limit your child’s potential
to this syndrome. Every child is unique and different and will achieve
what they can when they can. Many thanks to all of our friends in
the CDC community and for all of the support you have provided these past
few years.
Amanda lives in California with her parents, Tarek and Mary Beth, her
big brother Adam and is expecting a baby sister, Alliya, this August.
Mary Beth
Email : m.morris4@gte.net