For the last few months I have been taking Lilah to therapy after therapy after therapy. Some of those therapies come to our home. Lilah has made great progress. GREAT progress.
I am the type of person who is always thinking.... what is our next step. (I was worried that this may be a lack of acceptance. Thank you to Joey, my Ga Pines rep, for calming my fears and helping me to see that I just want Lilah to get and have the best.) I have been researching vision services in Georgia... Teachers, Therapists, Preschools, Services, Plans, IEPs, etc.
Even though Lilah is only 14 months, I am constantly thinking about what she needs to help her. What can I do better? What have I missed or forgotten? What are we as Lilah's team(me, PT, OT, VT, Representatives, Coordinators, etc) doing that is helping Lilah? What are we as her team doing that isn't giving her the absolute best?
I have learned in the past few days that Georgia doesn't have a preschool for Visually Impaired Children(0-3). Georgia is lacking Vision Therapists and Vision Teachers. There aren't great options here in this state for visually impaired children. From what I have been told, and read ,and learned is... that most children with vision impairments have other disabilities, too. So the vision impairment is usually pushed to the back burner. Children like Lilah, that only have vision impairments, are kind of...forgotten about. I have been told many, many, many times that "it could be worse" or "you are lucky it is just her eyes." These things may be true to other people, but in our home...this is our life. It is a HUGE deal to us. This is all we know. I do not know what it is like to live someone else's life, have someone else's child, or do what they do. I would never judge them, what they do, or how they cope. I am not asking for pity. I am asking for answers. For HELP! I am asking for Lilah to be able to receive services, treatments, therapy, help, etc. that she needs. That she deserves. Vision is what motivates us to change, move, laugh, play, talk, act, etc. With a lack of vision...delays occur.
Lilah is 14.5 months old and she is not crawling....yet. She is not pulling herself up....yet. She is not babbling very much....yet. Lilah isn't "doing" what they would like her to do. YET! BUT she is making amazing strides.
So my frustration is with the lack of services offered to visually impaired children in my state. My frustration is not, in anyway, shape, or form with Lilah. If Lilah never crawls, pulls herself up, walks, talks well, etc. that is perfectly fine. But I, her PT, OT, VT, Doctors, etc. know she will do those things. We all want the best for her!
Besides move to another state, what options do I have to help Lilah get the most and best she deserves?
7 comments:
Raise awareness...you go the BIGGEST church in the area...raise awareness. I am sure there are other families in the area that just wish there was a school for children with visual impairments.
Make this your cause! You can do it!
Here is my two cents. There has got to be a visual impairment teacher in a school district somewhat close by that you could try and contact. The Oklahoma School for the blind (not that we will be going there) has great resources and contacts of every vi teacher in Oklahoma. Does Georgia have a School for the blind. It might be a good place to start. I don't think Lilah will need to go there....she seems to have good vision up close....I don't know, but they might have a list of VI teachers you could contact and if not you and your four children can move into our loft in OKC...Yes? :) Good Luck my friend. Keep us updated.
I'm less enthusiastic for the idea of starting a cause than continuing to ask and research, consider going private - what that would mean, and tapping all your current services to the max. For now. I will think on this some more and get back with something better. Did you see my post on visual perception? Barbara
It's not just you or your state Katie... My O&M instructor I use by the state is THE Mobility instructor for my county. She is the only &M for adults and teens in the area. She also takes on K-12 children for private citizen's such as home schoolers. My wait was nearly 6 months.
Awareness is the key, yes. Have you contacted any of the national organizations? Such as NFB, or your local Lions Club? The Lions may be able to help raise awareness for your shortage in the area. - Perhaps speak at college? Influence nursing to enter a field of vision services so there are MORE vision specialists... This would be better for all!
Few think of entering a field of PT, OT, VT, O&M until it touches some one close to them... A letter to your state representative is also another good start!
You could also organize a community Vision Walk... http://www.fightblindness.org :)
Hi. Therextras sent me the link to your post and I'm glad I've discovered your blog. My daughter is also visually impaired and I am a graduate student learning O and M. In another year I hope to be working.
I don't know all the ins and outs in your State, but the first thing I would do is find a Parent Support organization. You can start on line with the National Association of Parents of the Visually Impaired (http://www.spedex.com/napvi/). They have a large list of resources and support groups. The best help I ever got was from other parents. Also, who is providing Early Intervention Services in your area? Early Start is a federal program, so every State has one. Your school district or pediatrician should know. Early Start could help you find VI services.
It's very common for kids with vision impairments to crawl and walk later than other children. You are absolutely right that Lilah WILL learn.
Please feel free to contact me if you have more questions or if I can help you find resources. Like I said, I don't live in your State, but I've been navigating the system for 14 years so I've learned a few things about finding services.
Thanks so much, Rich and Terena, for coming over and offering sage advice to Katie. Barbara
In florida things are the other way around. Plenty of resourses for kids with no other impairments but for kids like Sam, very little. All the bling orginazations are geared to kids who someday will learn Braille and be self reliant. I get so frustrated cause most kids with vision impairments have other issues today. You are blessed that , that is all you're dealing with!
I've thought about going and getting a MA in Vision. FSU has a on line course, where you don't have to be on campus much...maybe you might want to do something like that. There is certainly a need for it! I get encouraged by Sam's teachers ALL the time to do it! You'd be great at it and then you'd know how to help her from a professional status as well as a mom!
Yvonne
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