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Meet a Child with Aicardi

Jumping with Joy!

GEMSS would like to thank Joy and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

“Joy is a sweet and loving girl” says her mother, Sherry. At age 5, Joy has so many friends in her day care and her school. She loves to meet and greet her friends and “the teacher thinks she even has a boyfriend!” quips Sherry. Sherry says that Joy is so excited every day when she goes to school that “she will run me over on the way to the door.”

Joy was diagnosed with Aicardi syndrome when she was about 4 ½ months old. She spent several days in the hospital when her seizures began and the team arrived at the diagnosis during that hospital stay. At that point, her seizures were coming every hour and lasting about 30 minutes. Eventually they shortened and got down to just a few minutes in length with the drug combination she was on. She also has had a vagus nerve stimulator (VNS) implanted to help with seizures.

Joy started school when she was three years old. She began walking shortly after at age 3 ½. Her day starts in a day care and then she is transported by the day care to the local school. She spends some of her day in a regular classroom and some in a special education classroom. She is able to feed herself with some assistance and can drink from a covered cup. They have found that if the water is chilled, she can drink it down with no problem. If it is at room temperature, she has a harder time and will choke. When she was younger, her mother discovered that Joy could hold her own bottle if it was a skinny bottle so she bought cases of them at the dollar store!

Joy eats everything her family eats. Her food is chopped into small pieces and she can eat them easily. Her IEP lays out specifics around eating so she is safe at school. She also has some chairs that adapt as she grows to help her position while eating. Although she can walk, she may use a stroller after a seizure when her energy is low or when she needs a nap. Joy’s hand is always held when she walks in case she has a seizure and might fall. They are hoping to get a seizure helmet soon as regular helmets aren’t working.

Sherry thinks Joy can see fairly well while looking slightly to the left. They are still in the process of re-evaluating her vision.

Joy was speaking with single words and had as many as twelve words at one time. However, Sherry feels that when she came off some of the more effective seizure drugs (because they had reached the recommended length of usage), she began losing words as the seizures became less controlled. Recently, Joy started using two words again  - ‘Ma’ and ‘Oww’ when she slipped off the couch and cried. She sometimes will slap to get people’s attention. They are working on trying to get a more effective communication system in place.

Sherry’s advice to other Parents:

  • Sherry feels that Joy teaches people what love is. She is very happy that she is included in her school and that her classmates have the opportunity to get to know her. All kids are a gift!
  • Parents should go into meetings with a list and check off each item as it gets addressed. A prepared list helps when parents are feeling overwhelmed.

 

Sherry’s advice to teachers, school nurses, and special education personnel:

  • Be patient with parents as they become acclimated to the school setting and meetings. Some have many fears and, as a team, you can all work through those fears together.