I want to start off by pointing out that it is now almost 4am, I woke up at 2am with Aurora who managed to roll off her bed and then under it. Which gave me a bit of a heart attack, I rush into her room half asleep and see the bed empty, for about 5 seconds I freak out and then I hear adorable but obvious mocking sounds coming from under the bed.
So, I have a brief conversation with her about how it is not nice to scare Mommy and I place her back in her bed with her “soothing” pink baby elephant and she curls up to go back to sleep.
Unfortunately, I know that it will be near impossible to sleep after an adrenaline rush like the one I just experienced so I pick up the nearest book.
The book I started reading was one that was given to Aurora’s Grandmother by Aurora’s O&M (Orientation and Mobility specialist). Aurora’s O&M found this book at the Vermont Association for the Blind and Visually Impaired (VABVI). I have absolutely no doubt in my mind that not a single person who works for or with the VABVI has actually read this book, that includes the O&M that gave us the book to read. The book is titled Independent Movement and Travel in Blind Children: A Promotion Model, written by Joseph Cutter. Honestly, I’m only about 50 pages in. Don’t judge, it’s not by any means an easy read and I’m under very strict orders not to highlight the book (not that anyone else will ever read it).
Only 50 pages into the 320 page book and I’m so beyond frustrated that the only thing I could think to do was write a blog about it. You know it’s bad when your first and only thought is, “I MUST blog this!”
The book itself is not frustrating, it’s informative and interesting and I’m excited to finish it. I want to know exactly what it is we can be doing for Aurora to improve her Independence and help her progress with movement and travel. It’s kind of a big deal to me. Actually, it’s one of the millions of things I worry about every day. It’s hard not knowing if/when your child will walk on their own and explore on their own.
What has me a little worked up while reading this book is the fact that Aurora has had dozens of people in and out of her life since she was 6 months old. Every single person that has entered my home or entered the classroom for Aurora is given the task of helping her move forward in life. That is their ONLY job when with Aurora. So, here she is almost 6 years old and I’m realizing they have all failed. Aurora is progressing but it is 100% because of her support system at home. She thrives with family and regresses with these service professionals. I want to scream, “You had one job!” but I don’t think a single one of them would understand.
We meet on the first Wednesday of every month during the school year. Once a month all 15 of us cram into a tiny conference room in the school and we are meant to talk about what is working for Aurora and what isn’t working, share new ideas and focus on what her needs are/ will be. Every single meeting we have gone to, it has been us, the family with new ideas, it has been the family saying what isn’t working and what needs to change. Part of me realizes that I can’t expect a bunch of random people to care about my daughter as much as I do but another part of me says screw it, they’re paid to care, they’re paid to put the effort in, they damn well should be doing it.
Before I started this book I wondered if maybe it isn’t their fault, maybe I’m just angry at them because the stress of the situation forces me to need someone to blame. This book throws that idea out the window, there are people out there who put everything they have into helping blind children succeed. The book mentions things like setting the child up with a blind mentor at a very young age. Which would have been beneficial in so many ways. A mentor could guide the parent’s expectations to a level suitable for the child, give the child confidence with their surroundings in a way that a sighted person cannot, and give everyone who works with the child a clear understanding of their needs. Why has that not happened? Your guess is as good as mine. It was mentioned multiple times throughout her life. Even requested just a few months back that the VABVI attempt to find a blind teenager or adult who was willing to speak to the family about ways to motivate Aurora. The VABVI’s response was giving us an invite to a social event for young children. While that helps other families since we would be the most knowledgeable in the room, it doesn’t in any way help Aurora.
Another thing the book mentions is the proper way to perceive a blind child. You can think of the child as functional or dysfunctional but blindness from birth does not need to be seen as a disability, it is a trait. And that child has all the potential in the world to be fully functional in my mind.
I want every one of Aurora’s service professionals to read this book because I want them to understand that for 5 years we have been doing everything wrong, everything that they think they know about Aurora is wrong. I want them to start thinking of her education as something that requires creative solutions instead of outdated programs. We can’t do it alone, it sucks to have to admit that but it’s true. If I had the time and the money I would go to school for every type of therapy Aurora needs but I can’t do that. These people need to step it up.
I’m sure I’ve said it before and I will probably say it 100 more times, I don’t know what to do. I feel alone, isolated and that makes me pretty angry sometimes. I have met so many people that claim to know what to do for Aurora but not a single one of them can tell me what to expect or where she should be at this time. I have met 2 blind people in my entire life, the first when I was 13, there was a boy on my swim team whom I had very little interaction with but a great respect for. And the second sometime after Aurora was born who had learned to walk and be independent before losing his eyesight. Sadly I have had more experience with blind people than the people who are working with Aurora now. So, I don’t know what to do and I desperately want someone to guide me in the right direction. I don’t want to feel like I’m failing my daughter, I want someone to explain exactly what is going on with Aurora. But no one knows.
I worry that my frustration is only going to grow over time. I can’t fire them all and start over but I also can’t get through to them. Aurora’s PT, OT, SLP, O&M, MT, AT, TVI…they all acknowledge what I say in one way or another but they don’t apply it. We’ve asked for a hands off approach to see how Aurora handles it. Basically we just asked them to stop touching her and pulling at her hands so much so that she can find things on her own and explore her space when she feels comfortable. The very next day Aurora had 3 different people still pulling at her hands. I don’t want to lose it on them in these meetings because then I come off as this crazy Mommy who can’t keep her cool. I just don’t think any of them know what they’re doing. That’s harsh, I know, but this is a long overdue venting session.
The point is, I’m frustrated and I’m still working through what it is I should do about it. I think the first step may be to find/ hire a blind mentor on my own. When I figure out the rest of the steps, I’ll let you know.
I should sleep. 🙂 Thanks for reading, sharing and being supportive. Know that I appreciate all who take the time to read what I have to say. ❤