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Blind and Visually Impaired Community

Full History - 2021 - 03 - 19 - ID#m8kg0c
29
Advice to a new dad. (self.Blind)
submitted by HYDNXT
Hi everyone,

Just a little intro, I’m the father to a one and a half year old son that was born with bilateral Anophthalmia. He is a incredibly smart, energetic, and happy little boy. I as a parent, can easily feel scared or unqualified in raising him.

What things have people in your life done to help support you and that have been the most helpful?

What should I not do / should just get out of the way?

Thanks
paneulo 20 points 2y ago
Most important thing you can do: don't protect him any more than any sighted kid. That means he's going to do things that will scare the crap out of you. Let him discover his own limits, because if you set them, they will be far too tight. The other thing you can do is to read a lot. I recommend digging into old issues of Future Reflections. Also, look into your local chapter of the National Organization of Parents of Blind Children. They also have a discussion list. Join it.

The other other most important thing you can do is to question all the advice you will receive. You'll get advice from the general public, "professionals" from your school district and local/state government. Some of this advice will be good, much of it will not. Verify everything, and keep in mind that just because someone managed to get hired as a blindness professional, does not mean that they actually know what they're talking about. Even if they are themselves blind.

Other advice: Make sure he learns to read braille, and learns it well. We blind folks love to argue over it's importance, and many folks enjoy pointing out how they do just fine without it. But the stats are pretty unambiguous: people who know braille get work, those who don't, don't.

Good luck.
intellectualnerd85 4 points 2y ago
Don’t coddle him or allow others to do things for him out of well meaning. When he’s ready teach him how to do things like laundry and feeding himself
One_Antelope8004 3 points 2y ago
Start learning the books, games, and technology he's going to be apart of in 5-20 years. When my sister was born year 1 we knew she was deaf, we didn't wait to start learning sign or transitioning our home. Same here.

Give him all the options you can, and step back.
niamhweking 3 points 2y ago
As a parent I completely agree to let him run, climb etc. My little girl is a fearless adrenaline junkie and it's great! Look up the Oregon project for VI, it gives a nice list of milestones and skills that will help a VI child and a parent know where onnthe path they are without freaking you out, no kid VI or not is the same anyway but it does tell you the skills to teach them what normally is learned by watching, called incidental learning, paring a pencil etc as an example! My 8yo still cant do laces, nor can her 7yo sister who has full vision. We did try learning in lockdown no1 but never kept up the practice. Cycling on a bike wasnt for her but we bought an adult bike instead, I found out later there are really cool large stabilizers also. get him a balance bike now. I wish we'd done that. Good luck, make sure he's happy and you're happy
DrillInstructorJan 3 points 2y ago
I'll say again what everyone else has said. Do not coddle. I got this username because I sometimes work with young people who have hit sight loss and people say I'm a bit hard on them. Usually it's been teens, but maybe it's relevant to say that my latest padawan learner just went back to school before the pandemic and was aceing every class she took. And she's in a harsher position because she didn't grow up in this situation.

I promise it will be okay, it can be done. It is not easy, it is an incredible amount of work, I always feel like I'm working my actual job and working a second job dealing with the disability. I fall into bed exhausted at the end of the week and sometimes you think the only thing worse than doing it would be not doing it. But it can be done.

I will absolutely second the concerns over people claiming to be experts and having no clue. It is a job of problem solving and if someone's trying to tell you how to do something or that something can't be done, and doing that in a way you can think around yourself, well, perhaps that person just isn't that bright. Honestly a lot of people aren't that great, that's why I end up talking to the youngsters even though I have zero professional qualifications.

(And I don't know braille and I make more than the national average wage. But he'll learn it, growing up in that position. So don't worry!)
BlindGirlSees 2 points 2y ago
Sign up for any early intervention programs that you qualify for. At one and a half, I had people coming into my home to do all kinds of things. I started receiving orientation and mobility training, there were people that would come and show me different textures, all kinds of things. And then I started at the local visually impaired preschool around age two where I started learning braille and getting more orientation and mobility, how to use a cane etc. By the time I was ready for public school in kindergarten I was right on par with all of my peers. But throughout his young life, the more services he qualifies for, the better. They have programs that go right up until you’re old enough to have a case opened with the state as a teenager, at least in the US.
rumster 2 points 2y ago
I added a flair to your question - if you're not in the U.S. please let me know and I WILL UPDATE IT.
HYDNXT [OP] 1 points 2y ago
Thanks, in the U.S.
rumster 2 points 2y ago
Awesome! Also, if it helps you I suggest https://www.facebook.com/groups/174715012638483/

A group made for parents of children with impairment issues.

Have a wonderful Friday!
Apprehensive_Art3339 1 points 2y ago
I grew up with a visual impairment and I thank my parents for how they raised me. They taught me to be independent and figure things out on my own. They also didn’t tell me what I can’t do, so I would go after what makes me happy. I had a social worker once tell me not to go to school for interior design (I had some vision but it was degenerative) and instead do something more practical. It made me cry, but my parents gave me the ztrength to do what I wanted. I ended up switching majors to fine arts and art history but that was because I wanted to, not because someone convinced me to. I now live on my own with a decent job and have lived in the US and the UK all on my own. I may have been the one to achieve these things but it was my parents giving me the skills and support to get there. Best of luck!
Drunken_Idaho 1 points 2y ago
Congrats on your son.
I am blind and a Dad of sighted kids. I can give perspective from there.
I grew up in a family who treated me as a normal child. I rode bikes, drove tractors, hunted and fished with family and friends, etc.
The advice in this thread has all been good. Don't coddle the little guy. Its so so so easy to internalize limitations that people have for you if you can't see. I know many blind folks who have been told that they aren't capable of doing certain activities, that they're unwilling to even try as adults. Low expectations are their own handicap, and its far worse than blindness.
You can do most things without vision. You can't do anything without self-confidence. Let your son grow up to trust his own judgement, and don't let people from the school, the blindness agencies, the doctors tell you your child can't or shouldn't participate in life.
Also, braille is key. Last time I checked, which, its been a while, the unemployment for blind people in the U.S. is about 70 percent. Of people who know Braille, that stat is reversed and only 10 to 20 percent are *NOT* employeed.
I once worked in a job with lots of fellow blind people, and the ones who were blind from birth knew Braille. Every single one.
Last but not least, and this is as a Dad and not specifically as a blind guy, don't worry too much. Enjoy this time with your boy. Read with him, play, let him explore. Being a parent is fantastic, and your kids can teach you as much as you teach them.
Also, as a final note, me and many people here on this subreddit have jobs, families, and good lives. Blindness isn't a death sentence. You'll learn ways to adapt, and you will be amazed at how well he does when well-meaning sighted people aren't telling him to quit climbing backward up the jungle gym.
Best of luck.
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