Sounds of the Park

We went to the park again and Elena started climbing the stairs to the slide. As she got to the top, she hit the railing with her hand. She immediately stopped and started hitting the railing and another pole, listening carefully each time. It was really cool to see how she listened to each pole and how they sounded different. Then I tapped on the slide so she could find it and she stopped to listen to that. It was cool. Everything has it's own sound and she's starting to figure them out.

Possible Treatment for ONH

I've been reading a lot lately about people who are taking their kids to China for stem cell injections using umbilical cord stem cells. There has been lots of success and apparently, the younger the child is when they get this surgery the better the results. One story I read said they even saw overall brain improvement. I am looking for anyone who's been through this and can offer any information.

Toddler Canes

This is kind of a squeal to the post about helping them to start walking....I am still very confused about the many different types of canes and when it's appropriate to use which ones BUT I will tell ya'll which canes we have used.

We started with a 25 inch white cane through the free cane program by NFB (National Federation of the Blind). We got it when Elena was a year or maybe 18 months old. (Can't remember which but thinking closer to one year.) It had a round metal tip. Elena liked to tap it on the pavement and listen to the sound. Other than that, we didn't like it that much. She used to walk with her hand in the air, near her ear. Her physical therapist said it's just a muscle memory thing because she's used to holding out hand while she walks. Because of this, using such a lite weight cane meant she wouldn't hold her cane properly. In the beginning, she also kept her cane across her body, holding it with her right hand. It would often go between her legs. (Before you say anything, yes, I know part of this is due to her being a beginner to the cane.) When she did finally put her cane in front of her, the tip would get stuck in cracks on the pavement and would not move smoothly.

When she outgrew that cane, we got another one from her O&M (Orientation and Mobility). He gave us a 30 inch NFB cane with a small, rubber, white, rotating ball on the end. The rotating ball worked well while trying to teach Elena to move her cane from side to side (as well as a neat song we made up) but it was still to lite weight. It was also too long.

The next cane we tried was a success! (Also from her O&M.)It's a 28 inch white cane with red on the bottom. There is no label on it so I don't know who makes it. It has a thick rubber grip which, at first, Elena didn't seem to like. It has a hard, white, rotating ball on the end about the size of a tennis ball. This cane is heavier than the others and made Elena put her arm down. Because it rotates, it's great for exploring while moving it side to side. It moves very smoothly. It's also heavy and big enough that it doesn't get stuck in every sidewalk crack. Don't be worried that's it's too heavy for your kid, though. I think it's a perfect weight for beginners.



She has had some O&M training but most of it has come from her dad and I taking her on daily walks. I don't want to speak badly of the O&M but his visits seem pretty pointless. I'm sure it's just because she's so young and there's not much he can tell us that we don't already know or do with her. Don't think I'm saying not to contact your local O&M because you should. They are a help to parents who are new to cane traveling toddlers. For us, though, her physical therapist already told us many things that the O&M would later tell us and many things came naturally to us. For example, while taking her on walks, we'd bang on a stop sign post and have her find it with her cane. We had been doing this for a long time before her O&M came along and said to do the same thing. I'm not trying to sound boastful so please don't get me wrong.

Anyway, that's my experience with canes. If anyone wants to share their experiences with different types of canes or what situations are best for what canes that would be great. And I'm talking toddler or adult canes. I'm very interested in learning more.

Summer Fun

Elena loves playing in water and since it was so nice outside the other day I figured we'd go outside and have some water play. I don't have a kiddie pool yet and the biggest thing I could find was my mop bucket. I thought she'd just splash in it but as soon as she felt it, she wanted in. Can't believe she fit! lol

Helping her get walking

(PIC- Practicing)

I was on a forum and there were a few people asking for advice for getting their 2 year olds walking so I thought I'd put my response on here, in case anyone wants to check it out.

Elena, who's almost 3, didn't start walking independently until about 2 months after she turned 2. In fact, we were at a Halloween store looking for costumes and she just started walking about the store! Everyone was right when they said one day she'd just up and start walking. Just like that. She had the physical strength to walk long before that but was scared. I did tons of exercises with her that made her VERY mad but was worth it. Start very small with letting her hand go while she's standing. Let go for only a couple seconds. Gradually add time. Keep doing this and then add distance between you. It sounds simple but it will take a long time to get her to do it. I know it did with my daughter. Every physical therapy session was filled with screams because she would cling to me for dear life.


(PIC- More practicing while holding onto adult cane for support and child's cane. It took her a long time before she'd hold her cane in front.)

One thing her therapist said to try was to have her hold a ace bandage or something else that stretches and you have the other end. That way she feels some support and comfort but you are still helping. Once she's comfortable with that, try having her hold a toy with no support from you. With Elena, just holding something, even if I wasn't on the other end, made her comfortable enough to try walking. You can also try holding her elbow instead of her hand. The elbow has very few nerves so she'll feel like she's not getting a lot of support but will be. I did this a lot while playing on the floor with her.

We also used musical toys or snacks to motivate her to walk to me. Making a big deal about her walking or even standing is important. You might feel silly at first, I know I did, but I've found it really helps. For Elena, this works better than a treat. I clap and yell "YAY! YOU DID IT! You stood up" and give hugs and kisses. Make sure you tell them what you are praising them for. They might not understand it yet but they will.


(PIC- Walking with the ring gave her confidence to walk by herself.)

I remember, before Elena started walking, I honestly wondered if she'd ever walk. I thought about it all the time and worried constantly. There were times when she didn't seem to be making any progress. I thought I must have been doing something wrong. Thank goodness for Elena's therapists. They kept telling me I was doing everything I was supposed to. They kept me sane! lol.

Questions?

So looking back on my blog I've noticed a lot of talk about Elena but not so much about her blindness or the early stages of raising her. This blog is supposed to be not only about Elena, but also her blindness so I guess I'm looking for any questions from anyone about raising a child with Optic Nerve Hypoplasia or any kind of blindness really. I have so much stuff in my head it's hard to know where to start. So please, any and all questions you have, just let me know!

New Park

Elena and I went on a walk today and had a pleasant discovery. About 2 streets over is a great little park. It has several small slides which is perfect for Elena. There's almost no one there so I don't have to worry about her getting trampled. And no waiting in line for the swings. Most of the playground is shaded and there's even a drinking fountain. That's the first park in a while that I've seen a drinking fountain. Elena hasn't gotten the hang of drinking from one though. At least she enjoys playing in it. :)





I met a nice woman who was there with her husband and son. Her son is only 2 weeks older than Elena. She said they go to that park all the time. I hope I run into her again. It was nice to have an adult conversation. I love Elena to death but she's terrible at conversations. lol I'm so glad the weather is finally warm. There are many park days ahead!

Playing Catch!

My baby girl has learned to catch a ball! About a month ago, the weather took a break from winter long enough that we could go outside for a bit. After about 15-20 minutes of practice, Elena caught the ball! I couldn't believe it. I had her stand up and told her to put her arms out. I took her arms and showed her how to hold them. She kept putting them down so it took awhile to get her to hold them out. She does pretty good at throwing the ball but sometimes throws it behind her.

Elena already knows how to roll and catch the ball while sitting down so the concept was already there. When we play, I either say "One, two, three..." then roll the ball or say "Ready, set, go..." and roll the ball. She loves having me count in English and Spanish. I have her say it too when she rolls or throws it back to me. I encourage her by saying "yay", clapping and making a big deal. I'll say "You caught the ball!"



After she learned to catch the ball standing up, she got so excited and stomped her feet and shouted yay. It was very cute. When the ball hit her face (don't worry, it's soft rubber and full of air), she grabbed it and said "I caught the ball with my face!" It was so cute. She kept doing that with every body part it touched. "I caught the ball with my ear....with my tummy...with my arms...with my nose...with my eyes." Now all she wants to do it play catch. Crossing my fingers these storms stop coming through and it will actually feel like summer.

Side Note

To anyone who is reading this, if you have any braille books that you don't want anymore or even any regular books (preferably children's) that are in good shape but don't want PLEASE send them to me. Email me at imcollegebound2006@hotmail.com and I will send you my address. Put "braille books" in the subject line. Thanks in advance!