Living with a child who is blind - need advice

[minnieandmickey]

Hi there.
We found out today that my beautiful grand-niece (5mo) is blind. I myself have a child with a developmental disability, so I know the challenges there are that come with that, and that we all learn to adapt, but have no idea where to start and advise my niece with having a child being blind. Do you have any? And do you know any good resources on the internet we can start learning about adapting with her disability? Right now my niece is numb, which I understand, just want to be there to help when it's time.

 

[jmartinez1895]

A friend of mine from church just recently learned the same about her 6 month old daughter. Once the shock wore off they starting trying learn everything they could. She has told me that one of the best things that has helped her daughter is a special therapy that her ped. set up. In the sessions they work on stimulating hearing and touch and the baby seems to be getting alot out of it. They said that babies learn a lot of social behaviors by sight ( duh) and in the sessions the parents also learn how to use words and touch in everyday life to help her out. the web site www.blindchildren.org may help as well.

 

[bookwormde]

Of course your niece will seek out information on how bust to support her child and help her to adapt to the limitation, but more important is beyond this limitation, to enjoy discovering what is "special" about her and to allow her to be fulfilled in the pursuit of these gifts.

bookwormde

 

[peemagg]

I have no experience in this at all, but what about contacting a school for the blind? They may be able to point you in the right direction and give you some suggestions how best to help this baby.

 

[kwitcherkicken99]

First off, look for support in their area! That is going to be the only way to really find out how to accomodate baby at this time since she is still too young to communicate.

I work with two blind teenagers and the thing that has always made them comfortable around me is that I don't treat them any different than anyone else. There's nothing wrong with them, their eyes just don't work. Verbal communication has been the biggest thing. As long as I talk to them about what we are working on helps a lot.

I also have a lot of fun with puffy paint, glitter, and these things called wiki-sticks (wax covered strings, bendaroos).

There will be lots to do with the baby as she grows and I can attest that she'll be able to do great things in life. Do they know what caused her visual impairment? My "kids" have LCA or Leibers Congenital Amaurosis. 3 out of the oldest 4 kids have it and I've had the pleasure of working with 2 of them.

One thing to keep in mind as she gets older, be really gentle when she bumps into things, knocks stuff over, drops food in her lap, or spills a drink. My oldest used to get soooooooo upset if she spilled a drink, but I never got upset, even when it ruined something. It's not her fault that accidents happen and it breaks my heart to hear her say it wouldn't have happend if she could see.

Both of my kids are incredible. They are both 3rd in their class at a "regular" high school. Their mother opted to keep them out of the local school for the blind as some of the kids who attend there have other issues (sensory, developmental, etc.). It has been tough at times because some kids are just rude and some people (teachers included) have viewed their assitive technology as whimsical or novel. That's when we educate them!

Stay proactive for that little girl and you'll be just fine. There is so much out there to help her lead a normal life. Best wishes to your family!

 

[bookwormde]

KWitcherkichen99,
How great that your children are able to be supported and thrive in the LRE environment, unfortunately in many states a specialized school is still the default instead of a secondary alterative to be considered.

And thanks for "educating" students and teachers.

bookwormde

 

[kwitcherkicken99]

KWitcherkichen99,
How great that your children are able to be supported and thrive in the LRE environment, unfortunately in many states a specialized school is still the default instead of a secondary alterative to be considered.

And thanks for "educating" students and teachers.

bookwormde

I understand that, and we have a REALLY good school for the blind, it just wasn't the right fit for my kids. Their mom took a huge risk making that move, but it has worked out for the best.

We have NO problem educating people around here! It's the only way people will learn that not everyone operates the same (and I have to laugh when my kid does better at the mundane - like writing in German on the chalk board)

When I took this job I had no idea what I was doing, but over the course of the last 3 years, we have all learned new ways to do things. Shoot - they even have me typing on a Perkins! My skills sharpened very quickly since the younger of the two liked to make fun of my Braille skills! I still transpose some of the letters and contractions at times, but meh, I'm doing a lot better than I was.

The biggest/most important thing is creating a secure support team and great things will happen. These kids had support from day 1 (mainly from mom) and I can tell that great-auntie is already to step up to the plate. My best wishes to the family.

 

[dyna]

Most all states has a program called FIRST STEPS or something simular they do testing to see what the child needs as far as therapy starting as soon as it is reconized that the child needs outside help this is FREE service an in many states the therapy is done inside the home until the child is 3 yrs old can then starts preschool.

If you do not know how to make the contact with 1st steps or there is no 1st steps program in your area call healthy familys another free community services next on the list would be child welfare office (CPS) or the local food stamp office should be able to get you in contact with someone who can get you headed in right direction.

The baby is not to young for therapy an they will work with the parents on how to best help the baby too.

My grandsons both been in First Steps one just for speech therapy since he was about 2 yrs old an the younger gets speech, occupational an physical my own DD's was all in the same program for speech therapy......FREE service an it does not matter how much money you make....

 

[design_mom]

Most all states has a program called FIRST STEPS or something simular they do testing to see what the child needs as far as therapy starting as soon as it is reconized that the child needs outside help

In Ohio, that program is called "Help Me Grow." It looks like it's called "Early Start" in California: http://www.dds.ca.gov/EarlyStart/WhatsES.cfm

I do not have any experience with blindness, but my DD received speech and occupational therapy through Ohio's Help Me Grow program and I can't say enough good things about it.

 

[dyna]

I've also known of blind kids that was in the early intervention program in indiana (first steps) they do wonderfully with the kids........