Like many parents of children with special needs, I participate in online parent groups like Parents of Blind Children and MAPS Moms (Microphthalmia, Anophthalmia Parent Support Group). Those are both on Facebook and they can be an invaluable source of information and resources. There you will find families who have gone through similar situations and can tell you about their schooling, therapy, educational, and medical experiences. When you have a child with complex or rare conditions there are very few resources available to you, or few specific enough to be of much help. That’s why online parent groups are so essential!
There might be an organization for one condition but it’s across the country, or maybe your child might not have an overall diagnosis that covers everything they have going on. Tom for example, has many conditions but no overall diagnosis. So it’s a patchwork of things you follow and work with. And Tom is doing pretty damn well, I must say.
So these Facebook groups are great for getting information and sharing stories about your child, but we all know how Facebook works. It’s often either a highlight reel or disaster report. Sometimes I just can’t read all the reports of all the amazing feats. What if your child is just at home, being a kid? I don’t think that’s anything to worry about, but reading all these incredible achievements can start to weigh on you. It can make you start to worry.
I know they say don’t compare your child but it can be hard. It makes you worry, is my child falling behind? Should he be riding horses or competing in three sports at age six? In the end, I want my son to be happy and successful in life. There’s nothing that says he has to play the piano right now and there’s nothing that says he does not.
And you always happen to read those things on days when your child is struggling with eye pressing, meltdowns due to sensory overload or general frustrations in interacting with other kids. But hey, all kids melt down and some people never post about their difficult days. We often only see the highlights on these groups. Don’t let these things get you down! Our kids do face extra hurtles, but kids like Tom are used to figuring things out and they are used to following their own path.I just have to figure out how to stay on Tom’s path. Tom has delays which I rarely see addressed on blind sites. And when parents of children with delays ask questions they are often shouted down by comments like, it’s no harder for blind children than sighted. That may be true for some, but that’s not helpful advice when a blind child also has developmental delays. Every child makes progress in their own way and I wish that could be respected more.
Sometimes I have to step away from those parent support groups for a bit. I know that Tommy is making progress in many areas and that’s all that counts. Nothing is a guarantee so just keep plugging along. You’ll get somewhere! And I, for one, will continue to go on the Facebook groups and interact, but I think the trick is to know when to take a break or not get involved. It’s hard because sometimes you come up against the same tired old lines that don’t leave much room for individual experience. It can make it feel like you are being counseled when you are only asking a question. I have seen it get patronizing. But hey, it’s an online parent group and you have to take comments from strangers for what they are worth. Those online parent groups are valuable and I hope people, especially the blind adults, will stay and contribute.