When you’re raising a child with a disability you can feel alone. There’s so much you need to do and learn and I know you don’t want to add one more thing to your list… but have you found yourself a good support group yet?
Maybe that sounds like a luxury and maybe you’re thinking that you have too many other things to do first, but having a support network really can help you in the long run.
Trying to find a solution to a problem? There’s a good chance someone else out there has already fought that same battle and has the answer! Looking for a particular product or toy? Your support group would be full of suggestions!
But more important than just about anything else… it’s nice to have a place to go to just complain and let go… and know that the people you’re talking to totally understand and relate to you!
Top Support Groups
There are a lot of general support groups for parents of children with visual impairments. These are some of the best:
- The BVI Parents Group on Yahoo: This is a list where parents of blind or visually impaired children can discuss topics related to raising their children, dealing with concerns about the educational system, public attitudes about blindness, etc. Professionals are welcome to join the list, but this is a group primarily set up for the benefit of parents.
- NFB’s Blind Kid Group: This is an email list for anyone interested in the welfare and development of blind children. They also use the list to announce programs and activities for the National Organization of Parents of Blind Children.
- Jewish Guild’s Tele-support Groups: These free tele-support groups hosted by Jewish Guild Healthcare meet by phone every week, and you can join in whenever you wish. They currently offer 7 groups based on different disorders and diagnoses.
- The Blind Homeschooler Group on Yahoo: This group is for parents of children who are blind and are also homeschooling. If you are a homeschooler, you have to join this group! The parents are very active and supportive. Plus they often share braille books and accessible curriculum!
- ABVI’s Group on Facebook: This is the group for the Association for the Blind & Visually Impaired. It isn’t specifically for parents, but you can still get good feedback here!
Searching by Condition
Sometimes the best support groups are those centered around a particular diagnosis or condition. If your child has a diagnosis, try searching for groups for parents of kids with that condition. They’ll know better than anyone else what you can expect as your child gets older, which doctors are the best and how to accomodate your home and school to your child’s needs.
For example, searching for “retinoblastoma group” in Facebook brings up Parents of a Child with Retinoblastoma. Just searching “retinoblastoma” in Yahoo Groups (I left off the keyword “group” because they’re all groups in Yahoo) brings up Kids Eye Cancer Friends.
Look for groups with a fair number of people and recent activity. Those are the best ones! And, just some advice: I find that the Facebook groups tend to be more active. That’s not always the case, but in general you’ll get more from a Facebook group.
Searching by Location
Another tactic is to search by location. Facebook is great for this! Look for other parents of blind kids in your state or country. Connecting with people nearby can be so helpful because they’ll know about programs in your area, hospitals or doctors near you that you can trust (or ones you should avoid!) and will be better versed in your local school regulations.
Try searching for your state or country with the keywords “blind” or “visually impaired.” For example, searching in Facebook for “Ohio blind” brings up Parents of Blind Children of Ohio and searching for “Massachusetts blind” brings up MAPVI: Support Group for Parents of Blind Children in Massachusetts.
Start by joining lots of groups then figure out which ones give you the best information and which people you click with. You can always leave the other groups and just stick with the ones you like best!