My Heart Belongs Here

I have to admit…while I was thrilled I was asked to be a part of the auction committee for the iBCF, I must be honest and say my heart wasn’t in it as much as I hoped it would be. It wasn’t because I didn’t want to help and it wasn’t because I didn’t believe in the cause we were raising funds for (because the funds were to help kids just like Lola)…it is simply because Visually Impaired Preschool Services (VIPS-Bloomington) is making a direct impact on my daughters life…an impact I couldn’t fathom possible.

VIPS came into our lives when we felt no one could help us understand Lola’s vision impairment. You see, the ISBVI is great for blind and visually impaired kids that are three years or older, but there are virtually no resources in Indiana for our kiddos under the age of three. I called and emailed every First Steps agency in Marion County and literally found only one that had a vision therapist. We chose that agency specifically because of the vision therapist only to find out she would be on maternity leave…indefinitely. It was frightening to me. Rob and I were always told that Lola’s brain has the best chance to learn to see in the first few years of her life. According to VIPS, “85% of brain development occurs in the first 3 years of life.” Another staggering statistic is that “80% of what we perceive, comprehend, and remember is learned through the use of vision.” So it is critical for kids with conditions like Lola’s (Cortical Visual Impairment) to have their brains challenged to help create new neuropathways. By creating new neuropathways, the brain can essentially learn to see which means a condition like Lola’s can actually be directed to a more promising visual future. But that is generally if the right types of therapies are introduced by someone who actually understands vision impairments. Thankfully. My God, thankfully, we were directed to Ann Hughes and she along with VIPS welcomed our family into their organization with open yet incredibly knowledgeable arms.

VIPS has changed our lives. I cannot stress the importance of this organization to families just like ours. Each month Ann comes in with an agenda for Lola as well as all of the tools to help Lola achieve those goals. She brings in pamphlets of resources, print-outs, DVD’s and just a wealth of information she has learned from being a TVI (teacher of the visually impaired) for over 35 years. While a First Steps therapist of Lola’s may tell us Lola isn’t responding to an activity like she should (like using her hands), Ann will explain to us the way a visually impaired child would respond in an effort to help us understand what is “normal” for a kid like Lola. They taught us how to help our child and when you’re a parent, all you want to do in life is help your kid. But when your child has a disability that not everyone understands…well, you sort of feel helpless and isolated because you just want someone to get it. Ann gets it along with the entire staff at VIPS. I honestly can’t say where I think Lola’s vision would be today without VIPS. Sure it most likely would have gotten better over time, but we now know how to help Lola navigate through the world as a visually impaired child. We know her cues, when her vision is overloaded, when she can use it the best, what colors are easier for her to see, what textures help her remember things and it goes on and on. We know these things not because of a First Steps therapist (although we do love Lola’s other therapists too) and not because of the ever trusting Internet (sarcasm), we know it because of VIPS.

So while I love the ISBVI and I’m ecstatic that we raised as much money as we did for the kids at the School, I have to say VIPS-Bloomington needs those funds too…in fact, I think they need them more. They get virtually NO state funding which means all proceeds are raised through private donations. They just celebrated their first anniversary and while they continue to provide services to families like ours for free (yes for free!), they need help. According to VIPS, it is estimated there are 250 – 300 blind babies in Indiana with 100 of those infants and toddlers living within a 60 mile radius of Bloomington. Currently VIPS serves 42 families in central and south central Indiana and that number is likely to increase soon. VIPS has vowed not to turn down any child that needs help as “VIPS is the only agency providing Indiana’s youngest children who are legally blind with ongoing specialized early intervention.” But their costs are going up as they continue to expand. In order for VIPS to service just one child for a year, it costs $3600. Remember I said they currently have 42 kiddos like Lola so I’m sure you can do the math. They need funds!

So on Saturday night, they had their first ever Silent Auction and Dinner called “Dining in the Dark“. Dining in the dark is a common theme for auctions for the blind and visually impaired. While it has been known to be controversial in the blind community with some stating one meal doesn’t clearly help people understand the depth of the struggles the blind go through, the concept is truly an effort to help put their challenges into perspective for someone with the gift of sight. Most everyone at the dinner tried to wear their blindfolds throughout the meal and one gentleman at our table literally kept his on for every course.

One of the first VIPS-Louisville students, Jamie, teaching how to read Braille.

Ahead of time, I had been asked (along with a couple of other VIPS parents) if I would be willing to speak about Lola’s condition and what VIPS has done for us. Without hesitation I said yes as I truly wanted others to understand the impact VIPS has had on our lives. The lights were dimmed, Gavin, father to Maya spoke first while a gentle booklight shined his way. Fighting back tears he spoke of the first time he and his wife noticed Maya seeing light at six months old, about how they vowed to do everything they could to help Maya and how VIPS has provided an “invaluable” service to their family. Next it was my turn and while I was nervous to speak because I didn’t have anything written down, somehow the words continued to stream together perfect sentences stating the importance of VIPS to us. Just as Gavin did, I fought back my own tears as I spoke about Lola’s struggles and I fought back happy tears as I passionately spoke about VIPS. I couldn’t have gotten my point across any better than if I had read it word for word off a pre-written piece of paper. I am just that thankful for VIPS. I’m sure you can all tell.

I have to say, Lola was a little celebrity! People kept coming up saying “Is this Lola as in Say Hola Lola?”! It was hilarious! She was one of the only VIPS babes there and she was so well-behaved the entire night. Never would I want to exploit Lola’s disability, but I was happy people could see for themselves a child who directly receives services from VIPS. Lola may not understand it now, but she is an inspiration to others. By us continuing to document Lola’s condition, therapies, improvements, steps backwards, medications and successes, she is indirectly helping teach others about the importance of perseverance and what an impact early intervention services can have on such a young life.

Lights were lit up on the Giving Tree when enough funds were raised to service a child for a year. Lola’s light was lit up!

The night was amazing and well worth the drive! Rob and I managed to win an awesome basket full of clay pottery from local Bloomington artists. I have to say a very special thank you to a reader of this blog…you know who you are. This particular person donated a plethora of brand new kitchen items to the Silent Auction. While she would like to remain anonymous, I have to say your act of kindness (as well as many other acts) will never be forgotten. Thank you so much.

And we were lucky enough to have a few items sent to us as well and I must say…they are extremely well made and rather handy. Rob personally likes the Edgeware Adjustable Manual Sharpener even though Dexter was told “[to] stay away from sharp objects” per the request of this reader! I personally love the Zester which I recently used to zest orange into my homemade granola. I also am a huge fan of the Coarse Grater as well as the Spice Grater. One lucky person won the basket at the auction, but if you’d like to learn more about these products, please visit here.

If you would like to make a donation to VIPS-Bloomington, please follow this link.

If you happen to know of a potential partner for VIPS-Bloomington or have any other resources to share with VIPS, please contact me so I can pass the information along.

Thank you to Rebecca Davis, Ann Hughes, Diane Nelson, all of the VIPS staff and all of the volunteers who helped make the evening a night to remember!