When you have a sick child, it is vitally important to do two things: 1.) Educate yourself, and 2.) Find support.
Read as much as you can about the diagnosis, the treatment, the prognosis--but make sure you are utilizing reputable sources. Going onto message boards and reading people's personal experiences can be both useful and damaging. It's good to hear first-hand accounts of what it's like to have a child with Infantile Spasms, but many children have IS because of other very severe problems (such as brain injury or Down Syndrome), which may or may not be relevant to your own child. In these cases, the prognosis is likely to be worst-case. Getting your hopes up by reading only positive-outcome stories can be dangerous, too. It's best to maintain a well-rounded idea of what's possible and what's probable by reading not only personal experiences, but also professional websites, such as the Epilepsy Foundation, or the Infantile Spasms Project.
Support is imperative. Your family and friends can offer you a lot of great, loving support, but they will likely never fully understand what you're going through as a parent (unless they are very close to you and your child, or have been through something similar). You definitely need the support of loved ones, but you also need to be in touch with services that can benefit you and your child, and other parents who have experienced what you're going through. Many organizations have a community section on their website where you can get communicate with other parents of children with Infantile Spasms. This is also another example of how reading other parents' personal experience (blogs and message boards) can be beneficial, but again, keep in mind that every child and situation is unique, which means every outcome varies greatly).
Here I've compiled some of the best resources for education and support that I have come across so far (please feel free to link to more in the comments!):
Read as much as you can about the diagnosis, the treatment, the prognosis--but make sure you are utilizing reputable sources. Going onto message boards and reading people's personal experiences can be both useful and damaging. It's good to hear first-hand accounts of what it's like to have a child with Infantile Spasms, but many children have IS because of other very severe problems (such as brain injury or Down Syndrome), which may or may not be relevant to your own child. In these cases, the prognosis is likely to be worst-case. Getting your hopes up by reading only positive-outcome stories can be dangerous, too. It's best to maintain a well-rounded idea of what's possible and what's probable by reading not only personal experiences, but also professional websites, such as the Epilepsy Foundation, or the Infantile Spasms Project.
Support is imperative. Your family and friends can offer you a lot of great, loving support, but they will likely never fully understand what you're going through as a parent (unless they are very close to you and your child, or have been through something similar). You definitely need the support of loved ones, but you also need to be in touch with services that can benefit you and your child, and other parents who have experienced what you're going through. Many organizations have a community section on their website where you can get communicate with other parents of children with Infantile Spasms. This is also another example of how reading other parents' personal experience (blogs and message boards) can be beneficial, but again, keep in mind that every child and situation is unique, which means every outcome varies greatly).
Here I've compiled some of the best resources for education and support that I have come across so far (please feel free to link to more in the comments!):
Resources for Infantile Spasms
The Epilepsy Foundation
The Child Neurology Foundation
The Infantile Spasms Project
This resource has great information about what the disease entails. On this website you'll find videos of other children experiencing spasms, which is what really helped us to know that J.'s strange little jerks were not to be ignored.
The Infantile Spasms Community
Connect with other parents enduring the same diagnosis.
Early Intervention Program (NY)
Information about Early Intervention for New York residents. (EI is free in New York!)
Center for Parent Information and Resources
Learn about Early Intervention, who qualifies, what services entail and how to find Early Intervention services in your area.
Other Infantile Spasms blogs
Read about other firsthand experiences.
Resources for Cerebral Visual Impairment
The Cerebral Visual Impairment Society
Little Bear Sees
This blog has great tips on activities to do with CVI children, and how to help their brains learn to see.
Blind Children's Resource Center
National Association of Parents of Children with Visual Impairments
American Council of the Blind
Read about toys that can benefit the development of a visually impaired child.
http://www.smart-toys.info/single-post/2016/06/01/Tips-for-helping-partially-sighted-infants-see
Thanks so much for sharing your story and all these resources. My little guy is 14 months and has Infantile Spasms and CVI too. It's crazy how similar our story is to yours. So glad your LO is getting treatment! Our blog about our son's journey is (http://familiaverde.blogspot.com)
ReplyDeleteThanks for reading Lindsey! I'll check out your blog :)
Delete