Oliana turns 2

Oliana turned 2 on May 10th. I look back sometimes and can't remember how we even got here!! It seems like we've had her forever, but on the other hand it's gone by so fast. She had a great birthday. We just had a little party at home with friends and family. She was so excited to have so many visitors and kids. She loved the cake, of course, and the presents. Tissue paper is the best!!! We made sure this year not to wrap the toys in the boxes, but take them out of their boxes and just wrap the toys. She enjoyed opening them this year. Last year she was so frustrated by the boxes. I'm sure she didn't understand why she just kept getting boxes as presents. We're learning.
She's doing really well. She's walking with her walker and sometimes without it. She has to hang on to our pant legs to walk, but she's not scared anymore to do that. A step in the right direction. She can even stand for a few seconds by herself. She's not so scared to do that anymore either. She's talking up a storm. She repeats alot of words and says quite a few words on her own. Most of the time she'll say the first or the last part of the word. Like for "milk" she says "ka". For "drink" she says "dri". We're getting used to her language and it makes life so much easier for her to be able to communicate.
She is definitely a two year old. She wants what she wants when she wants it and if she doesn't get it, watch out!!! I'm talking about a throwing herself down, banging her hands on the floor, crying tantrum!! She's such a drama queen. When she's not happy or doesn't want to do something she sobs like it's killing her. Lets just say therapy visits are not so much fun. Mostly it's the physical therapy that she hates. She always has and probably always will. It's hard for her so she doesn't like it. I understand and feel bad for her, but we have to make her do it. If we gave into her every time she cried we'd never get anything accomplished.
Disciplining Oli is more difficult than it was and is for Kekoa. I know I don't want to baby her, but she just seems so much younger than Kekoa did at 2. We are starting to have to discipline though. She has started throwing her cup and her food when she's done. She understands "no", but ignores it most of the time. Typical for her age. She started saying no. I think that's her favorite word to repeat during therapy. She says "na,na,na,na,na" pretty much the whole time.
So we continue on with the challenges of raising two young children. Oliana has definitely become more challenging the older she gets. She gets very bored very quickly. Finding new activities and toys has become alot more work. She doesn't like to play by herself for very long. I think most of that has to do with the fact that she doesn't really know how to play. Most kids play by imitating what they see. Obviously in Oli's case she can't do this, so teaching her how to play is an ongoing challenge. She'll get it eventually. We might be insane by the time she does, but hey, as long as she gets it!! Even though she has become alot more work, she's still a wonderful little girl. She has such a great sense of humor and the best little laugh!! I continue to feel blessed every day to have such a wonderful family.

Walkie-Talkie Oli

We got a new posture control walker from Oli's physical therapist, Grace. She's doing really well with it and can now actually walk a few feet by herself using it! We're really excited! She's also getting more therapy too. She goes once a week to the hospital I work at and receives physical therapy, occupational therapy and speech therapy.

She's really trying hard to talk now. It's so cute because I'll sound out the word for her and put her hand on my mouth so she knows how to move her mouth, tongue and lips to form the word. She concentrates so hard and then tries to imitate the word. You can just see the wheels turning in her head. She furrows her brow, cocks her head and moves her mouth. I just love it!! She is doing more sign language too! It's getting a lot easier because she's able to communicate more of her needs. She signs eat, sleep, more, all done.... And she says, yes, up, mama, baby, bye bye...and a few more words that I'm not thinking of right now.

So we continue to move forward. It's soooo much easier now than when she was little. Not only because she's older but, because Seth and I have learned to just relax and enjoy having two beautiful, smart, happy children. At the end of the day, what more can you ask for?

Blind swimmer!!

Most of you know Seth and I were both swimmers in high school and college. This is a really great and inspirational story I was so excited to read!! Seth and I have talked about Oliana swimming, but we weren't sure how she would do it, the flip turns, diving, ect... This just proves that she really can do it!! This young man has basically the same condition Oli has. I just love reading about blind kids doing "normal" (hate that word too) sports that other kids enjoy. Oli loves the water and can already blow bubbles and put her face in and hold her breath. Too long sometimes, I have to pull her head up! This story is inspirational for me especially because he talks about how he has to push himself and doesn't let his blindness keep him from exploring the world. He doesn't use it as an excuse to feel sorry for himself. I find it particularly interesting that he went to a blind school first and then public school. He said that helped pull him out of his comfort zone. This is what we hope for Oli. We want her to go to a blind school first and then integrate to public school so she is not only around blind peers. She learns as much from sighted people as they learn from her. Hope you all find this as inspirational and as exciting as I do.!!!


Here is a great news story from Chester, Pennsylvania about a high school senior named Matt Wallace, who has bilateral anophthalmia.

http://www.delcotimes.com/articles/2009/02/11/news/doc4992db780983f279507622.txt

Bonner senior is a vision of inspiration
Wednesday, February 11, 2009 10:28 AM EST
By JOHN LOHN jlohn@...
CHESTER — With each stroke, the cheers grew louder and the applause inside the Widener University Natatorium became more sustained. It’s a familiar scene for Matt Wallace, a Monsignor Bonner senior. During Friars meets, he’s everyone’s favorite swimmer.Wallace isn’t a record-setter. His path from wall to wall isn’t always straight, crooked swimming a normal occurrence for the 17-year-old. In last week’s meet against La Salle, Wallace finished well behind the competition. Really, who cares?Of the thousands of scholastic athletes in Delaware County, Wallace might be the most inspirational. Born without eyes, a condition known as bilateral anophthalmia, Wallace swims in the dark. He can’t see his competition. He must be notified when to turn. Sometimes, he gets out of the water with skinned and cut hands, the result of unforgiving collisions with the lane lines.Guess what? He’s having a blast. Swimming has been Wallace’s motivational tool and a foundation for his shift from an insular environment to the real world.“Before I got to Bonner, I was in a cocoon,” he said. “I didn’t really have a concept of the real world and that’s what I’ve been shown.”It’s 40 minutes before Bonner faces La Salle in a home meet at Widener. The Friars are completing their warmup and Wallace is moving through his set in Lane 1. Nothing seems unusual. He has a good-looking stroke, better than a number of his teammates. It’s smooth, not choppy. But as Wallace approaches the wall, preparing to turn, he stands out.Nathan Stuhltrager, the 9-year-old son of coach Stephen Stuhltrager, stands at the end of Wallace’s lane, holding a five-foot long piece of PVC pipe. The end is covered in foam, and it’s this part that taps Wallace on the head or shoulder, indicating it’s time to turn. Upon contact, Wallace starts to somersault, pushes off the wall and begins his next 25-yard journey. The younger Stuhltrager, holding the creation of assistant coach Mike McDevitt, heads to the other end of the pool, ready to perform his duty a second time.For the Bonner swim team, it’s just another day.In his 13th year coaching Bonner, Stephen Stuhltrager wasn’t sure what to expect the first time Wallace wandered onto the deck. He didn’t know how he could tend to a team with 30 members, including a blind freshman. Three years later, nothing surprises him. Most important, he loves the message that Wallace sends by simply completing a race.“As a coach, my first thought was making sure we would have a safe environment,” Stuhltrager said. “A half-hour into the first practice, he was all over the lane and there was mass chaos. We had to make sure he had room, so we dedicated a lane to Matt. It’s really worked out great. The kids love him and I’ve never heard him complain about anything. He’s improved so much from his freshman year, but more than that, he’s a real inspiration.”Competing for the Overbrook School for the Blind as an eighth-grader, Wallace arrived at Bonner confident in his ability to immediately contribute. He quickly learned that Catholic League swimming and the practice demands were incomparable to what he knew at Overbrook. Still, he forged ahead and scored for the Friars in a meet earlier this season against Archbishop Carroll.While completing flip turns was a victory as a freshman, Wallace has started to dive on his starts this year. Previously, he would hop in the water before a race and simply push off the wall at the sound of the start. If he has one regret, it’s his decision to skip his junior season.“When I first jumped in the water for Bonner, I was cocky,” said Wallace, whose condition develops in the first month of pregnancy and affects about one in 100,000 babies. “At Overbrook, I was one of the better swimmers and I thought it would be the same here. Halfway through the first practice, I was hurting so bad. I called coach and told him I didn’t think it was going to work out. He convinced me not to bail out.“This has been a great experience. After that initial letdown, when I saw how much better this was than Overbrook, I decided to use it as a learning experience. Failure can lead to success. I’ve surpassed all of my goals. I’m faster than I’ve ever been. I wish I hadn’t taken last year off. That was a big mistake. I was just being lazy.”Against La Salle, Wallace far from dogged it. He contested the 200 freestyle and 100 free on an individual basis and was a member of Bonner’s 200 and 400 freestyle relays. He handled that workload in about 45 minutes. Preparing for those races, he gets plenty of help from his teammates.Before Wallace is required to report to the blocks, a Bonner swimmer finds him on the deck and escorts him to his lane. Once he climbs out of the pool, another teammate brings him back to the Bonner area of the deck.“This year’s team has been phenomenal,” said Lucy Wallace, Matt’s mother. “The atmosphere has been great. He really feels accepted.”For most of the day, Wallace wears prosthetic eyes. When he attends swim practice or a meet, he removes them, to ensure he doesn’t lose one. That lesson was learned the hard way. The only other time he isn’t wearing the prosthetics is while he sleeps.Aside from swimming, Wallace has been involved with the Blind Sports Organization, based out of Philadelphia, since he was a 6-year-old. He’s regularly played “goal ball” and “beep baseball” and his passion for sports is evident in his addiction to ESPN’s SportsCenter. He’s even dabbled in water polo, albeit in a special practice set up by Stuhltrager.So his athletes could understand what Wallace deals with on a daily basis, Stuhltrager had the Friars place duct tape over their goggles. What ensued was a water polo game in which Wallace was dominant, scoring once and assisting on the only other goal tallied. Meanwhile, the rest of the Friars were at a sensory loss, one swimmer continuing to wade through the water five minutes after play concluded, unaware the game was over.“You have a real appreciation of what he deals with every day,” said Jeremy McDevitt, a junior and Bonner’s top swimmer. “We just get in and swim. He has so much to overcome. Before I got here, I heard stories about him. Then you see him pushing himself in person and it’s unbelievable. It’s so motivating. He’s a hero to the team.”Before enrolling at Monsignor Bonner, Wallace attended only schools for the visually impaired. He spent kindergarten through sixth grade at St. Lucy’s Day School for Children with Visual Impairment and moved to Overbook School for the Blind for seventh and eighth grade. It was during his middle-school years that Lucy and Jim, Matt’s father, decided their son needed to enter a regular learning environment.“He wasn’t too happy about going to Bonner because he had found a comfort zone,” Lucy Wallace said. “But we knew he needed Bonner and as he’s grown up and matured, he’s seeing that, too. At Overbrook, everything was done for him. He has to work at Bonner. Nothing is handed to him. When he goes to college, we know Bonner will have him prepared.”Since Wallace resides in Marple Township, the Marple Newtown School District has played a key role in his education at Bonner. It provides him with a Braille Note, a computer in which Wallace keeps his homework, e-mail and assignments. The district also has provided him with a vision teacher, Jeanne Aaron. Among her duties are turning upcoming tests into Braille.Wallace’s class load isn’t exactly easy. A strong student, he’s taking Advanced Placement English and is an Honors student in his other subjects. He’s also been busy with extracurricular activities, serving stints with the newspaper and yearbook. His favorite duty, however, is his involvement with the morning announcements.Before Wallace leaves for school, he turns on ESPN or listens to XM Satellite Radio and familiarizes himself with the results of the previous night’s games, particularly those of Philadelphia’s sports teams. Wallace then goes on school television and updates his classmates on the latest news.“I needed that development and to be surrounded by kids who didn’t have the same disability,” he said about attending Bonner. “I was kind of childish. It took some time, but I’ve grown up.“And Overbrook wasn’t good for me academically. I needed to go to a place where I was going to be pushed in class. There was definitely a transition period, getting used to the tougher classes and fitting in socially.”A devoted fan of Ohio State sports, Wallace will have to buy some Cherry and White apparel next year, when he begins life as a Temple University student. Wallace plans to major in journalism, with the hope that a career awaits either as a television/radio sports commentator or as a sports writer.Think a career in sports journalism is impossible? Think again. Hal McCoy of the Dayton Daily News has covered the Cincinnati Reds for nearly 30 years. Since 2003, he’s been legally blind, the result of multiple strokes. And legendary Los Angeles Times columnist Jim Murray continued to write despite losing sight in his right eye to a cataract and sight in his left eye to a detached retina.While Wallace has no vision, it has not hindered his dreams. If journalism doesn’t end up in the cards, perhaps a career in comedy is an option.“Maybe I can’t do play-by-play, but I could be an analyst,” said Wallace, who also considered West Chester University. “Donovan McNabb and the Eagles aren’t going to win a Super Bowl any time soon. How hard was that? The reality is that I’m going to have to work a lot harder than most to get what I want. But I believe I can get over the barriers in front of me.”The day Matt Wallace joined the Bonner swim team, he wasn’t looking to be a motivational figure. That’s just how his high school career has worked out. Wallace’s story has been an anything-is-possible tale — for his teammates, competitors, coaches. Faced with a disability, he has found a way to overcome and get the most out of his high school days.All the while, Wallace hasn’t felt sorry for himself.“There are times when I wish I could see,” he said. “It would be nice if I could drive, but it’s not something I’m going to dwell on. There’s no point in doing that. The things I can do, I try to do them as best I can. With swimming, it’s a great sport for exercise and staying in shape. I’ve enjoyed every minute of it and the bonding with my teammates. I’m going to miss this.”His inspirational story will carry on.John Lohn is the Deputy Sports Editor of the Daily Times

Oliana's starting to crawl!!

Oliana is finally starting crawl. Not in the traditional sense, but hey, she gets around. She puts her hands way out in front of her and kind of scoots her knees. She rolls around too. She's finally learning where her toys are in the living room and actually going and trying to find them. She is also pulling herself all the way up to her knees without sitting her butt on her heels. We're so proud of her.
She had her first occupational therapy appointment last week. OT is more refined movement and fine motor control. Like picking things up with her fingers and things. She's doing really well with that too. She can feed herself now. We're starting to work with her on using a spoon. She doesn't quite get it yet. We learned that she needs more stimulis and tactile input because she doesn't have her sight. We stuck all kinds of fabric and braille numbers and letters to her toys. We also made boards of fabric, sandpaper, and astroturf for her to feel and walk on. She really likes it. I found out why she is still drooling too. She has floppy muscles, her arms and legs(which we already knew), and also her oral muscles. We're working on that with her too. Cold compresses to her face, teething rings, massage, ect....

Kekoa is a typical 3 year old. Getting into everything he's not supposed to. He's too smart for his own good sometimes. He's a good kid and is more and more involved with his sister. He knows all his colors, ABC's, and can count to 30. His vocabulary astounds me sometimes. He says the funniest things!! He even makes up his own words and is very imaginative. Pretending he has toys and presents and handing up imaginary things to play with. It's quite funny.

Trying to walk

My new years resolution this year is to be more involved with everyone, Oliana's physical therapy, getting her walking, connecting with parents who have children who are blind, and updating this blog more often. When Oli was first born I was part of an online support group for parents of children who have micro/anopthalmia. I recently rejoined the group to reconnect with them and get new ideas for helping Oli. And sometimes just to vent my frustrations. Let's face it, no one expects this kind of thing to happen to them. I was recently talking with my dad and we were talking about Seth and I having more kids. I told him right now I don't for see that happening. I told him that it is two or three times more expensive and more work to have a special needs child ( I like that word more than "disabled child"). Disabled to me is negative. Anyways, my dad said "Yeah, one of Oli is like having three or four children". Very true. Anyway, the recent posts online have focused on other people with kids who are Oli's age or older not walking. Seems I'm really not alone in this quest. Right now we are really trying to get her to walk with her push toy, without yelling at me, and to stand by herself. Right now she is just too afraid to do it. I'll sit next to her and let her hang on to my shirt. I'll tell her to let go and she'll just get this terrified look on her face like, "YOU WANT ME TO DO WHAT?". I try to make her feel comfortable and tell her I'm right here. I know she understands but, she just won't let go without freaking out. Her arms will go straight out, she'll gasp and then cry. Like I'm not going to catch her. She's kind of in that scared stage right now. She'll be scared of new sounds especially if I'm not holding her. Let's just say that she's a little attached to me. All I hear, and all everyone else hears is "ma ma ma" all day long.
I need ideas on how to make her less afraid and more willing to walk and stand on her own. If anyone out there has one let me know. I know she has more obstacles to overcome because of her blindness but, I'm not willing to let her know that. I don't want that to stop her. I can't imagine how terrifying it must be to not be able to see what's in front of you or around you, but she's never known anything else. So if she doesn't know it she shouldn't miss it right. Wrong. It seems that she is definitely aware that she can't see. I just don't know how to get her comfortable being on her own. For right now we'll just keep working. It's also more difficult I think, because I have Kekoa. He does feel left out alot. I'll be working with Oli and he'll come up to me and say "I want to play mommy's game". I said what is mommy's game. He said " Holding hands and walking". I felt really sad then. He thinks I play with Oli more and he's too young to understand that I'm trying to help Oli. I try to explain it, but he is just to young to understand. I try to make him a part of the therapy and have him hold on to Oli. Yeah, that lasts about 2 seconds. Then he's running off laughing. If anyone has any ideas on what to do about Koa let me know that too.

One other thing I wanted to mention, I don't know if any of you know who Ben Underwood was. He was a young man, 16, who lost both of his eyes when he was 3 to cancer. He wore prosthetics and was on T.V a couple of times because of how remarkable he was. He rode his bike, played basketball, did everything that a normal 16 year old would do even though he was completely blind. His mother said that from the moment he woke up in the hospital and realized that he was blind she made him do everything any other child his age would do, despite not being able to see. He was a real inspiration. Sadly he died on January 19, 2009 from cancer. He will be greatly missed. Even though I didn't personally know him I feel a great loss. He was truly someone to be admired. He has a web site. I believe it's benunderwood.com. Sorry for the sad news.