You’ll have to excuse my absence over the past week, but life seems to get busier by the day. I love posting about our little existence in our corner of the world and I especially love sharing all of the great triumphs that Lola conquers yet some weeks not much goes on that is blogworthy. And rather than bore all of you with our day-to-day “normal” life, I like to save your time and my energy for the goods.
I’ve been one tired out mama lately as I’ve been working full-time, caring for a child who is definitely transitioning into the “toddler” phase, making sure my newly semi-disabled husband is trucking along OK and much more in between. I’ve committed to a couple before work work-outs meaning my day starts at 4:45 am and sadly ends around 8 pm (so much fun for my husband, right?). Lola now has her new bedtime routine which includes cuddling, hair playing, back tickling, foot rubbing and any other type of soothing she feels necessary to help get her to sleep. Now I know I’ve said it time and time again about giving her this comfort as she has never really “needed” me emotionally before, but this is getting a bit out of hand. I love that Lola loves me and that she finds great comfort in being close to me (and she is MY child which means she absolutely loves to have her hair played with), but some nights this goes on for hours and I’m tired and selfishly…I need my sleep! We are trying to not give in as quickly as she needs to know the world does not suddenly stop to cater to her. It’s a hard lesson for both her and I, but just because she has special needs does not mean that she does not have boundaries and behavior expectations as well. And let me say the child is becoming very boisterous about her wants lately, but Rob and I don’t necessarily look at it as a bad thing. Of course we have to teach her appropriate behaviors, but the fact that she knows what she wants and shows emotion about it is a very important part of the development process. When a toy is taken from her, she immediately cries. When I put her down and she wants to be held, she cries. When you leave the room and she wants you to stay, she cries. She has started to resist taking her medicine because she knows it tastes bad. When she doesn’t like something to eat, she will keep turning her head and will refuse to open her mouth. But just as she shows disinterest and unhappiness, she also shows genuine interest and extreme happiness. Now when I get home from work, she will smile as she stops what she’s doing and she’ll haul ass in my direction to greet me. When she hears the bath water, she’ll squeal with excitement. She now loves the dogs and actually spent ten minutes yesterday trying to catch up with Zara. She’s just becoming her unique little individual self and it’s a delight to see even when it includes whimpering and whining.
Lola’s hair grows so fast she was due for her second haircut and it was interesting to see how intrigued she was with the whole process. As I said, the girl loves to be pampered. After her bath I always lather her up with lotion, clean her ears, brush her hair and she contently sits (although now she has learned to help rub in the lotion!) with a smile. But the last time she got her hair cut, her vision wasn’t as good and she sat silently with little interest as to what was going on. Yet this time, she kept looking at what the stylist was doing and she would grab at the comb. I was ecstatic to see Lola use her vision so well.
I had been contemplating on whether or not to buy an iPad for a long time now. Of course the hesitation was the monetary cost of it, but after months of unsuccessfully winning one for Lola through numerous giveaways, I decided to bite the bullet after watching an older 60 minutes episode that was re-aired last week. I was touched when I saw how much the iPad had helped kids with special needs particularly those with autism. I knew the iPad was extremely beneficial for children with vision impairments as well and I thought it could quite possibly be an investment that Lola could use for years to come. While Lola doesn’t quite understand the dynamics of the iPad apps just yet, she has shown some interest in hearing the sounds and seeing the amazing visual components.
While we are still testing out different apps for Lola, here are a few we’ve found thus far:
Tap-n-See Zoo: An iPad app developed specifically for children with cortical visual impairment by the parents of a little boy with CVI. This app has a black background (easier for kids with CVI) with one red moving object. When the object is tapped, a cool sound is made and the object becomes larger before it disappears.
Fluidity: A brightly lit fluid background with a main focus color at a time. There is continuous flowing of actions and when the screen is touched, that area lights up even brighter.
Baby Fingers: A white background that has objects appear when the screen is touched. Lola seems to find this app to be the most entertaining and I have to say I do as well because one of the objects is indeed a pile of poop! She thinks it is the funniest thing!
LightBox: This app was designed for a group of teenagers with complex special needs although the app is widely used for mostly children with and without special needs. It has over 21 different types of touch and hear applications such as “Glo Worms”, “Love”, “Blowtorch” and many more. This is a paid app, but in my opinion well worth the $1.99.
If you have any iPad apps to share, please write in. We’d love to try it out and share with our readers.
On Saturday, we went to Woodland Bowl with a group of friends to celebrate a birthday. I hadn’t been bowling in probably ten years, so I was ecstatic to be going. Unfortunately I was a bit *cough* rusty with the ole bowling thing, but that didn’t stop my competitive nature from coming out. Seeing that Rob’s hand was still on the mend, he had to sit on the sidelines with Lola. The place was extremely loud with music which overstimulated Lola in the beginning, but her daddy got creative and occupied her senses with a bit of standing therapy. She quickly calmed down soon thereafter.
Lola wasn’t thrilled with her dinner so we took her for BBQ instead….
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