Click on the photo for the great news!
The Princess and the Pope
Monday, May 20, 2013
Sunday, May 19, 2013
Know the Glow
Tuesday, May 14, 2013
Never say never...
We never usually don't win anything.... Then along came the Great Bike Giveaway... And suddenly, we were winners of the BEST...BIKE...EVER!
It's called a Buddy Bike and it's perfect for JP. Like a reverse tandem, he sits in the little seat in front and I sit on the back and use the long handle bars to control the steering and such.
The contest was run by Friendship Circle a site that offers support and programs for the special needs community. It's a very cool site... I encourage you to click the link and check it out!
We can't wait for JP's new bike to arrive! Camille is thrilled that we will actually be able to go on long bike rides... she loves to ride her bike, but her brother just can't keep up on his Big Wheel.
It's going to be a really fun summer!
The contest was run by Friendship Circle a site that offers support and programs for the special needs community. It's a very cool site... I encourage you to click the link and check it out!
We can't wait for JP's new bike to arrive! Camille is thrilled that we will actually be able to go on long bike rides... she loves to ride her bike, but her brother just can't keep up on his Big Wheel.
It's going to be a really fun summer!
Thursday, May 9, 2013
Consumed by the Special Needs
JP has been home for just over 2 years now. To the say the first year was "turbulent" would be a gross understatement. Our little world, as we knew it, was flipped upside down and we had to painfully adjust to our new "normal". We're still making those adjustments today.
While the first year was spent going to countless doctors including ophthalmologists, ocular oncologists, ocularists, pediatric orthopedists, orthotists, neurologists, ENTs, developmental pediatricians as well as countless hours in the hospital for multiple eye surgeries, MRIs, blood tests and treaments and stays at the Ronald McDonald House. The second year has been a journey of another kind. Once JP's health was stable, we began the daunting task of "reprogramming" him. When JP arrived home, at age 3.5, he no life skills. None. He could not feed himself or drink independently from a cup. He could not communicate. He was not potty-trained. He could not dress or undress himself (he wasn't even able to pull his own pants up or down. We had to teach him everything. Fortunately, he's been a quick study. Within a few months of being home, he learned first, to finger feed himself, then eventually use a spoon and fork. Today he has more than mastered the "art of eating". He can also drink from a cup, successfully. He is fully potty trained and can both undress and dress himself. He is learning to wash his own hair and body in the tub. We are still working on better teeth brushing, but he's getting there! While it's impossible still to have a conversation with him, he is able to answer questions and communicate his basic needs, like telling us he's tired, hungry or needs to use the potty. He's pretty good at stopping when we say "stop!" and coming to us when he's called. He's mastered the white cane and mastered getting around in familiar environments, like our home and his school, without it. He knows his letters and letter sounds and can count endlessly. He knows all of his basic shapes and some colors... (we're still unsure but we think there are colors he doesn't see) A lot of very hard work and tears and prayers have gotten JP to the place he is today. He's made wonderful progress. He is still VERY much behind his same age peers.
I try not to get consumed by the special needs. A couple of weeks ago, JP was award "Most Improved Student" in his PK class. We were invited to go to a baseball game to receive JP's award. It was probably the first time we all went out as a family and things felt normal. (Well, normal for us, anyway). But when life is consumed by therapies and special ed and adaptive sports, it can be somewhat difficult not to get caught up in it all. I do a lot of research. I belong to a bunch of special needs blogs and internet community groups. I seek advice and hope to be able to return the favor by giving some good advice back to the community.
In the mean time, I plan to try to focus more on NOT getting consumed in JP's special needs and trying harder to just enjoy our time together, as a regular family. I know it's a stretch goal... I'm hoping summer will inspire us to do more and obsess less!
What do you do to enjoy your time together as a family? Please comment!
While the first year was spent going to countless doctors including ophthalmologists, ocular oncologists, ocularists, pediatric orthopedists, orthotists, neurologists, ENTs, developmental pediatricians as well as countless hours in the hospital for multiple eye surgeries, MRIs, blood tests and treaments and stays at the Ronald McDonald House. The second year has been a journey of another kind. Once JP's health was stable, we began the daunting task of "reprogramming" him. When JP arrived home, at age 3.5, he no life skills. None. He could not feed himself or drink independently from a cup. He could not communicate. He was not potty-trained. He could not dress or undress himself (he wasn't even able to pull his own pants up or down. We had to teach him everything. Fortunately, he's been a quick study. Within a few months of being home, he learned first, to finger feed himself, then eventually use a spoon and fork. Today he has more than mastered the "art of eating". He can also drink from a cup, successfully. He is fully potty trained and can both undress and dress himself. He is learning to wash his own hair and body in the tub. We are still working on better teeth brushing, but he's getting there! While it's impossible still to have a conversation with him, he is able to answer questions and communicate his basic needs, like telling us he's tired, hungry or needs to use the potty. He's pretty good at stopping when we say "stop!" and coming to us when he's called. He's mastered the white cane and mastered getting around in familiar environments, like our home and his school, without it. He knows his letters and letter sounds and can count endlessly. He knows all of his basic shapes and some colors... (we're still unsure but we think there are colors he doesn't see) A lot of very hard work and tears and prayers have gotten JP to the place he is today. He's made wonderful progress. He is still VERY much behind his same age peers.
I try not to get consumed by the special needs. A couple of weeks ago, JP was award "Most Improved Student" in his PK class. We were invited to go to a baseball game to receive JP's award. It was probably the first time we all went out as a family and things felt normal. (Well, normal for us, anyway). But when life is consumed by therapies and special ed and adaptive sports, it can be somewhat difficult not to get caught up in it all. I do a lot of research. I belong to a bunch of special needs blogs and internet community groups. I seek advice and hope to be able to return the favor by giving some good advice back to the community.
What do you do to enjoy your time together as a family? Please comment!
Friday, May 3, 2013
On blindness...
Only 18% of people considered blind are totally blind, meaning they have no usable vision. They are not able to see print, no matter how large, not able to identify colors, no matter how bright or contrast, they may or may not be able to perceive light and dark. They can not see shapes or motion... However, the other 82% of blind and visually impaired people can, sometimes, see large print. Make out colors, shapes, light and motion. It doesn't make someone "sighted"... here are few definitions.
Low vision is used to describe a loss of visual acuity while retaining some vision. It applies to individuals with sight who are unable to read a newspaper at a normal distance of viewing, even with the aid of glasses or contact lenses. People with low vision often need adaptations in lighting and/or enlarged print to read something.
Legally Blind refers to people that have less than 20/200 vision in the better eye or a limited field of vision that is 20 degrees or less at its widest point. People who are legally blind may have some useful vision.
Totally Blind individuals need Braille, raised-line drawings, audio recordings, and/or other non-visual media as an accommodation for accessing the content of visually presented materials.
Mike is totally blind. He relies on a dog guide, reads Braille, is unable to see media of any kind. He does have bright light perception.
JP is totally blind in his right eye (no light perception) but his left eye has some usable vision. He can see some colors, and, if they're large enough, even identify some print. It's wonderful for him to have something... It's very useful for him. It's important to remember he is still blind. He has adaped to his blindness so well, even I 'forget' sometimes. He still needs a cane to get around safely... he'll still need to learn Braille to become literate. He doesn't have low vision... He's blind, and it's okay!
Low vision is used to describe a loss of visual acuity while retaining some vision. It applies to individuals with sight who are unable to read a newspaper at a normal distance of viewing, even with the aid of glasses or contact lenses. People with low vision often need adaptations in lighting and/or enlarged print to read something.
- Myopic- Unable to see distant objects clearly, commonly referred to as "near-sighted."
- Hyperopic- Unable to see close objects clearly, commonly referred to as "far-sighted."
Legally Blind refers to people that have less than 20/200 vision in the better eye or a limited field of vision that is 20 degrees or less at its widest point. People who are legally blind may have some useful vision.
Totally Blind individuals need Braille, raised-line drawings, audio recordings, and/or other non-visual media as an accommodation for accessing the content of visually presented materials.
Mike is totally blind. He relies on a dog guide, reads Braille, is unable to see media of any kind. He does have bright light perception.
JP is totally blind in his right eye (no light perception) but his left eye has some usable vision. He can see some colors, and, if they're large enough, even identify some print. It's wonderful for him to have something... It's very useful for him. It's important to remember he is still blind. He has adaped to his blindness so well, even I 'forget' sometimes. He still needs a cane to get around safely... he'll still need to learn Braille to become literate. He doesn't have low vision... He's blind, and it's okay!
Friday, April 19, 2013
New Orthotics
JP got his new orthotics today. While they seem really big to me, they're probably what he should have had all along, because there're making a huge difference in his ability to walk and walk well.
 |
 |
This is a picture of his old SMOs for comparison. They did a lot to help his pronation, but not much for his stability. He already loves his new DAFOs.
Saturday, April 13, 2013
Subscribe to:
Posts (Atom)