The internet is my first resource for most things, and it’s probably yours too. As the parent of a child with special needs, I use the internet for information, support, and just to find people who understand. Most of the people I know in real life know nothing about tube feeding and blended diets, or eye surgery and rare eye conditions. I go online for support, not drama, but there’s always drama to be found online.
Parents are passionate about their children. I am too and I get that; but you do notice cliques forming, and sometimes people say really insensitive things online. You know, the kind of thing where someone is basically saying, “Thank god my kid doesn’t have what your kid has!” Yeah. That happens all the time on some sites and I know better to not visit regularly. It’s just not worth getting upset. I’m talking about disease or condition specific email list serves, Facebook groups, websites with message boards. As soon as someone can make a comment you have the potential for drama.
I saw a listserve blow up with comments from parents wanting the NFB to focus more on children with multiple disabilities. I saw it mostly as a release of frustration from parents who desperately need resources.
When Tom had non-stop surgeries and hospital visits when he was a baby/toddler I was a whole different person. We were locked down as a family and in survival mode for a long time. I quit my job and didn’t do anything that didn’t have to do with Tommy. His therapies, surgeries, doctor appointments, and daily care were our only focus back then. I don’t think we really started to come out of it until we got used to caring for Tom’s g-tube. (Tube-feeding was such a blessing for us! Tom just would not eat enough back then and would get dangerously dehydrated.) So while I won’t say I know where everyone is coming from, I can empathize to a certain point.
Having a child with delays is just plain hard. You always hear stories of blind children who have amazing musical abilities or other incredible talents. I’d love to see us celebrate everyone. I do see so much effort going into inclusion and it gives me great hope. I think the NFB is an incredible organization but sometimes being stirred up can lead to good things.
I do know that parents of children with blindness and delays or additional disabilities walk a lonely road. It took me a long time to even admit that my son has delays. It can really feel like you get pushed into a category of kids with delays or kids with no delays. Isn’t there a middle ground? Aren’t there options? And it feels like they make those decisions when kids are so very young. Sometimes I wonder if I would be considered delayed if I was a child today? I was quite the little dreamer and incredibly uncoordinated. So yeah, Tommy has delays but I’m not counting him out of anything.
I stay on top of things by staying online. Everyday there seems to be a new advance that will help people who are visually impaired. I’d like to see such creative thinking going into work placements for people with disabilities, including intellectual disabilities.
You can research conditions online but when you add blindness to the mix you often reach a dead end. No one knows what to do with blind kids! Search babies who won’t eat and you will find information. Then search blind babies who wont eat and you can’t find anything! (A couple of years ago there was nothing! Now there’s a bit. Also, most of the tricks/techniques to get kids to eat are visual.) Now I realize this is because of the fact that there aren’t that many blind children so naturally there’s not that much information. Blindness is a low incidence disability.
That’s a big reason why all of the parent generated information is so incredibly important and why we need to stay online. Parents are holding some the most detailed and useful information about rare conditions. So get out there and share that information, but please, try to be nice. Our community is small but powerful!
Where can you find information and support? Here are some ideas.
NFB’s Blind Kid List serve
or, via email, send a message with subject or body ‘help’ to