March 26th is Purple Day for Epilepsy Awareness. Purple Day is an international effort dedicated to increasing awareness and removing the stigma around Epilepsy. Annually, participants wear purple and host events to educate and support those with Epilepsy. CCAI hopes to shed light on the challenges and joys of raising a special child with Epilepsy. We have many waiting children in our Country Programs with medical needs, such as Epilepsy that need loving, permanent homes. Would you consider adopting a child with Epilepsy?
Please take the time to read and learn from a fellow CCAI family who lovingly shared the challenges and joys of raising a child with epilepsy whom they adopted:
For our first adoption, our child was home for six months before being formally diagnosed with epilepsy. China did not list the epilepsy diagnosis in the medical report. We had always been aware of the possibility of an unanticipated diagnosis like this; we were grateful that our beloved child was home with us and that we could provide the medical care that they needed.
There is a continual learning curve regarding all the neurological terms and treatments related to epilepsy and managing our child’s care. Additionally, epilepsy is unique for every single person. The illness’s unpredictability has been part of our path for periods, returning to being more predictable.
We’ve done many years of speech therapy and OT several times a week. While our child lived in China, the seizures were untreated, so they first needed MORE help to learn the skills they “should” have developed during those first 28 months. We recently restarted OT to work on some fine motor and planning skills. Cognitively our child can grasp age-appropriate materials as long as we can be flexible and adjust the pace to accommodate a need for rest during med changes.
There is an overlap in the medical fields between neurology and psychiatry. We also work with a child psychiatrist and licensed mental health therapist knowledgeable about epilepsy and adoption to ensure we address things as best as possible to help our child flourish. When we found the correct med to calm anxiety and ADHD symptoms….our child joyfully announced, “LOOK! I can do hard things when I can hear my thinking and don’t feel so worried!!” Thankfully, that reassured our efforts to address mental health needs also.
For any child we parent, we work hard to ensure they have a stable home now and in the future. Overall we have found that the epilepsy diagnosis helps with “approvals” for additional treatments from an insurance perspective.
Many grants and community agencies offer help for this diagnosis, which has benefited us. Because of the developmental disability category, many states provide long-term financial help for kids and emerging adults. These include Medicaid assistance, programs to pay a parent caregiver, and state grants to help young adults live independently.
We live in a time with SO MANY treatment options for epilepsy.
Despite these difficulties, we wouldn’t have it any other way. We get to parent this child! Our child is fantastic, fun, intelligent, creative, tender, and kind. We don’t have enough space to list all of their positive qualities! We are in love and grateful to be their family!
Adopting a child with Epilepsy has been a blessing. We are stronger as a family. Furthermore, we are learning the life skills of leaning INTO a problem, doing what is possible to problem solve while remaining happy and healthy regardless of outcomes. In addition, we are letting go of the need to control life. Dealing with an illness in the family can provide a gift of perspective.
Do not walk away from a potential child to parent because of the epilepsy diagnosis. Get more information, educate yourself, and explore the options.
Remember, we can’t choose whether or not our biological kids have epilepsy. We love them as they are. That is the case with our beloved child, who we adopted.
Finally, and most importantly, people CAN live healthy and happy lives and have epilepsy. Those things do not cancel each other out.
Sharing our journey as a family affected by epilepsy is something we willingly do. However, we also strongly believe in the importance of our child’s privacy. As such, we tried to write this post in a way that shares some of our experiences but not the private details that belong to our child. We welcome potential adoptive parents who wish to learn more from a family experienced with the adoption of a child with epilepsy to contact CCAI and contact us.
CCAI advocates for many waiting children with epilepsy to find a loving, permanent home. If you would like to learn more, please email us at email@example.com.