My lovely daughter was undiagnosed until she was sixteen years old. That was not unusual at the time. When she was sixteen the imaging capacities had gotten better and the geneticist found a small visible deletion on the short end of her #4 chromosome.
We had a diagnosis and were informed of a support group gathering that summer in San Francisco, about 45 miles north of our home. When we walked into the lobby of the hotel, we were both a bit overcome at the familiarity of the little faces. Dominique is non-verbal; but she knew……….she looked around and she knew.
It is hard for me to imagine what it would be like to NOT be a member of the support group. This is a group of people who understand our daily life and challenges without being told. We always look forward to our biennial family reunions!