For Ashlin's family the first several months were so exciting and filled with all the normal baby stuff. After several months, Tracy and Dave, Ashlin's parents, began to notice that Ashlin didn't seem to be experiencing normal baby milestones in the sequence or time frames one would expect. Things like rolling over, sitting up, crawling, standing and walking seemed delayed. They tried not to panic and told themselves some baby's progress slower than others...she'll get it. Then Tracy and Dave noticed that Ashlin seemed to lose these skills overnight. One day she could do these things and the next day she didn't know how to do it.
Right before her fourth birthday, the family got confirmation that Ashlin had Rett Syndrome. Regression of skills is a characteristic of Rett Syndrome. It takes a tremendous amount of repetition to teach Ashlin a new skill. One person would not have the time required to teach her. The family reached out to CCRI.
With the support of dedicated caregivers, within twelve months, Ashlin went from being able to sit at the table for five minutes to sitting for thirty to sixty minutes at a time and focusing on a project. The ability to focus for longer periods of time, made it possible for her to learn many new things.
Because of the partnerships in Ashlin's life, she is communicating, feeding herself, experiencing the community and learning new things every day. Her CCRI caregivers are there for her and to support her family.
"Dave and I wouldn't both be able to work if we didn't have CCRI services and the quality of our family life would be very different. Ashlin is doing so much more than we could ever have helped her achieve on our own. The independence Ashlin has worked so hard to achieve has only been possible because of a complete partnership between home, school and CCRI all working together on the same goals over and over. This is the key to her success."
Ashlin's future looks bright because of the many successful partnerships that have been built. Although this is Ashlin's story, it is very similar to other families who have a child with a disability. Most of us take for granted that our children will progress as we expect. So we don't think about the added complexity a child with a disability adds to the family dynamics and responsibilities. Receiving services, such as CCRI provides, can really be a wonderful support for families.