Sydney was nonverbal from age 2 to about 4 1/2. It was devastating for us not to hear her say our names or say hello. She stopped responding to her name and wouldn’t make eye contact. I lost a lot of friends after her diagnosis. Syd would be the only one not invited to a party. And pretty soon Harrison stopped getting invites because they thought I would bring Sydney. When Sydney was older I gave her a party with the kids from her summer camp. Most of those children had never been to a birthday party either. They all brought their siblings and we all felt safe. No judgements allowed.❤️
One of the saddest things was not knowing when Sydney was sick and that she couldn’t tell me. So, I showed her how to use a band-aid and to put it on her body where it was hurting. I wasn’t sure if she understood me. But after a few days I noticed she had a band-aid on her bottom! My mother’s intuition kicked in and she was constipated.😜 We felt good that she made the connection. But when she began putting band aids on her head, pulling out her hair and hitting her head with her hands. I knew that another road was being added to our journey which would lead to epilepsy.
Sydney is now 12 years old. She can tell us when she is sick, when she needs the thermometer, when a seizure is coming and when she needs to go and see the nurse.