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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Play dates

I have a 10-year-old with Stargardt's disease and I really want him to meet other kids with similar or the same disease and I don't know how to go about this.he really needs to see that he's not the only one

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Re: Play dates


May I ask why you feel he needs to know there's others like him? Trust me, I'm not trying to be a smart a$$, but I've been blind since i was six, totally. I went to a public school, and I can tell you from experience my life is immeasurably better having done so.
To be blunt, it's a sighted world built by and for sighted people. I benefited more learning how to adapt to sighted people, fit in with them and even pick up simple things like looking into a sighted person's face during conversation the importance of which can't be overestimated though it sounds simple. The spacial awareness I gained through competing against sighted kids in sports, gym class (not adaptive phys ed, but regular) and figuring out how to play normal games at recess ETC carries you far into the rest of your life as a blind person. My parents sent me to a blind camp when i was seven, and while there were parts that were fun, I didn't keep much of that with me besides not wanting to ever go back. I look at it this way, it is different from a kid's perspective when a disability happens. They need to know that even with their difference, they don't need to be treated differently within reason of course. I won't be asked by the u.s. military to drive a tank any time soon, but I hope you get my point. A kid doesn't need a support group beyond being loved, respected, and at least given a chance to interact with kids who don't have disabilities. I'm not saying there won't be times that mess with his mind, but a child's ongoing cognitive development seems to enable them to mature and evolve with it. It's not like an adult for example, who has had vision all their life, and suddenly loses their eyesight. That brings with it a whole new ballgame and needs to be dealt with very differently; just mmy opinion.
My parents held me from nothing, i had a BMX dirtbike which may have sent me to the ER a few times... but each of those trips translates directly into a success later in life. I wrestled through college, rowed stroke on a winning crew team for a division I school, played in their jazz band, and was in marching band in high school. I have a great job which enabled me to give my son a comfortable life, and provide for my family, and it's all because I worked my butt off every day of my life to be what I like to call abnormally normal.
there will be exceptions, not saying it'll be all picnics and rainbows even if he's fully integrated, but they figure themselves out. I guess what i'm saying is look to others with similar situations for advice, and be careful to not have them turn into social circles, because that will be more debilitating than anything.
High school was not fun for me, I was more like a disease no one wanted to catch. I think that was more rooted in the challenges every teenager faces, i.e. all the kids I went to school with... but I survived and learned from it.
I presently mentor a young blind student in a public school, where the district has decided to bring all the visually impaired kids together in a special education class. This drives me ape***t. There's nothing wrong with these kids minds, and they're not learning any social skills being separated from the sighted kids who will be the super vast majority of their peers in college and thereafter. The first thing I asked the school to do is integrate them. They are slowly trying it, and the kids are much happier, and they have more than 3 or 4 friends to choose from now.
I am sorry if this came across as being a know-it-all jerk, that is not my intent. I am endeavoring to pass along some of what I have lived.
Best of luck to you.

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