During our course of therapy with Tyler we were given a PIP girl. Her name is Aften. PIP is the parent infant program through the state deaf and blind school. This therapy was not a hard one to get and we had them from the second we left the NICU.
Aften was a LIFE SAVER! She has no idea how much she helped me. Aften and I still keep in contact and she is raising 2 very special girls as well. They both have hearing loss. Ironically she worked with eyes and her hubby works with speech so I think they have their grounds covered.
The pip program was helping us parents LEARN about our child's vision loss and how to maximize what they have to help them better them selves and so the can learn to use their other senses to catch up and be functioning in society.
So many things are dependant on sight and when that is gone or missing in some part or another so many things are messed up.
Aften gave me a book. It is a very small book. I don't even think she remembered she gave it to me. I still have it. this book has some AWESOME suggestions
Some things I learned :
- Their world is so close to them to start. Even if they can't see well babies in general get everything brought to them. Babies with visual impairment will see it different. Use their hands more or put things in their mouth longer. Its the only way they can "see" it the way they need to.
- A routine is very very important thing for them. Not just routine in what they do but routine in where things are. Ty hasn't needed this till recently but he needs to know where his stuff is. If we can find what he wanted he has a few meltdowns. But overall he knows where his stuff is so he can get around his world
- READ READ READ!!!! Tyler didn't really care much for books till recently. Now he loves them But when he was younger we had touch and feel books. Tactile stimulation is amazing for them. We still do all we can to find books that Ty can see ( big print) and things that he can touch. There are also ways that you can turn your regular books into tactile books.
- Learn what they can see. In Arizona Ty LOVED the light boxes. he loved anything to do with light and light switches. He still does. It worked well for him
Sight is such a huge part of sensory. I would love to be able to have a family member who wants to learn more come and see some things we do for sensory and to also have others sit back and try to understand. We know that we can't control everything but we have so many things that will help him be at ease and behave better.
ROP is hard. Its a lonely world for mom and baby! I am thankful for people like Aften coming in to our home, playing with our child and getting him to laugh~
* PS I still remember how hard we got him to laugh at the animal bowling* your rock AFTEN
2 comments:
This is so hard for people to understand... How can you miss something, if you never had it in the first place? YOUR world is sharp (I hope) my world is blurry. I don't know what it's like to look across the street and read the sign, or sit at my desk and see the blackboard. People who where borne with a visual impairment don't know any better.
You mentioned how Ty can navigate the house with out bumping into things... Well he knows where things are... Put him in an unfamiliar room, thats different.
#2 speaks to me... It's the number one rule of VI/blind, DON'T MOVE THINGS NOT EVEN A FEW INCHES... We get use to things being their or ware we put them, we get very cranky if you change that! - Teachers who have VI students burn this to memory.
Talking books and now downloads for the blind can be had for FREE threw most local blind services, for children, teens and adults... simply ask!
Also, just because we can't see, does not mean we don't like the things you like... We may not be able to see the movie well or see the baseball game, but we can listen... :-)
I'd be interested to learn more. :) Bree doesn't have any visual impairment from her ROP, we just struggle with the strabismus portion of being preemie. (We actually have a doc appt today to set a date for surgery on that...and to decide to do one eye, or both). Thank you for being such an advocate for preemies!
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