Wednesday, December 23, 2009
Also, he has decided that he needs to eat more with utensils, and work on his table manners. Yes, he decided this, over the last few months, that this would happen when he was 5.
Sunday, Acer had a great Birthday party. At his request, we served ice cream floats and chocolate pie. We had only a few people over, Acer's closest of our adult friend, Vicki and Will, and then relatives, Cousin Brandon, Uncle James, Uncle David, his girl friend Autumn, and YeYe and NaiNai (Bill's Parents). He actually only got three gifts, but the last one he opened was the doozy, yes it was a real full sized drum set from YeYe and NaiNai as a Christmas and Birthday gift combined. It's an electronic set, the ION professional set, and it has several wonderful features, including headphones. Uncle David assembled the set and set it up for Acer. He's also the one who'd done the research to make sure it was worth buying.
Acer has been on the set for hours every day since. He had a half day of school on Monday, a Santa breakfast. I'm sure that Santa was surprised when Acer sat on his lap and told him what he'd already gotten for Christmas. Aside from that time off the drums, Acer was on them for most of the day. Brandon and I estimate 6 hours to be on the low side.
Yesterday was a full day of school, and Acer brought cookies to each school. Uncle James' cookies are an old family recipe, and he made us up 4 dozen for the party at home, and both schools. They are very big cookies, with oatmeal, walnuts and chocolate chips, almost a meal in themselves.
Acer has had a great year, we've watched him develop so much. He's much more independent, yet has better playing with others skills. He's going to two different half day programs, and doing well. He transitioned off naps and into an early bedtime. He's daytime dry about 99.5% of the time, and when he's not, it's because the bus couldn't stop to take him to the bathroom, even tho' he told them. He's stopped speaking in the second and third person, he's started playing the piano, not just playing on, but playing. He sounds out songs and can play quite a bit of Fur Elise. He's gotten a sister, and has had a great relationship with her, very little sibling rivalry on his part. He is learning the braille letters, and is showing a real interest in learning how to read. He's grown in height too, up to 39.5" He seems to grow about a half an inch about every three months. He is a lot of fun, and a joy to have as a son. We are so blessed.
Yes, I'll post pictures, jut not right now, we have to get ready for a funeral of a dear woman from church. :(
Tuesday, December 15, 2009
Tuesday, December 08, 2009
Monday, November 30, 2009
Friday, November 20, 2009
Wednesday, November 18, 2009
I have been proud to tears this week as Calli is going to get an honor at the Honor Roll ceremony at her school. She has come so far so quickly, I could not be more proud of her accomplishments and her willingness to learn.
Saturday, November 14, 2009
Thursday, November 12, 2009
Rebekka also started an excellent mission two years ago, called Hands That Heal. She was interviewed about it here
Please check it, and their blog out. Perhaps this is a ministry that would call to you, to foster one of these little ones in your home someday!
Monday, November 09, 2009
Okay, mostly about leaves.
Last Wed., Acer was home form school sick and napping, and I was downstairs reading. I started hearing a blower, but assumed that it was at a neighbor's house. I mean, we don't blow our leaves we simply mow them back into the soil as both a soil amendment and as a weed preventer for next year. It was a persistent noise, and seemed to close, so after a bit, I went up to see. Yup, there was a blower going on our property, run by a guy I'd never seen before. It seems he'd gotten our house, tri-level, red brick, green shutters, silver mini van, mixed with the neighbor's two doors down, tri-level red brick, green shutters, GREEN mini van. He finished up a little, by blowing the leaves off the driveway and sidewalks, and then went down to the other house. Nice enough guy, let Acer check out what the noise was, but still....odd.
This weekend, knowing Calli was disappointed by our not raking up the leaves so she could have a leaf pile, I sent Calli over to Mum's to help Uncle James with the leaves. Mum has two HUGE sycamore trees, and it's not unusual for her to have 60 bags of leaves over the season. On Saturday, Calli helped by bagging all the leaves Uncle James raked - 20 bags. On Sunday she ASKED to go back and they bagged another 7 bags. She also helped take stuff to the recycle place where she had fun throwing things into the appropriate bins.
Acer is mostly over being sick, and we did find his glasses so Hurrah there. He also has a new you tube love - Instructional piano playing videos and piano videos in general. He prefers jazz, boogie woogie and blues piano to classical, but still has his favorites in classical, Moonlight Sonata and Fur Elise have top ranking.
I seem to have some down with an ENT infection and am fighting it, but it's leaving me pretty drained.
We invited a girl from Calli's school to go to church with us. B. is also blind, but a couple years older than Calli. B. and Calli have played together on the playground, and even eaten lunch together the first month or so Calli's been in school. I made sure to print out another Braille copy of the Sunday School Lesson and service bulletin so she could follow just as Calli does. I stayed home and slept and restd, but by all accounts, B/ wants to come back. Hurrah!
Thursday, November 05, 2009
Wednesday, November 04, 2009
Calli feels okay, she just has a slight dry cough, so yesterday she napped and went to bed early. She was sick two weeks ago, but has not shaken this cough yet.
Tuesday, November 03, 2009
Here's The Princess Calliandra pulling her coach. Can't imagine where her horses have gone that she's pulling it herself ;) She was going FAST! Bill and I were walking faster than normal to keep up with her. We put Acer in the wagon to start, he finished up in Bill's arms but at least he didn't spend the whole night there as he has in past years. I'm sad that the monkey costume will be going away next year, I love that costume.
Here's the Princess with her hair down, but you can still see the long dangly earrings she loves and some of the makeup we used to make her more glamourous for the evening. I think this is what she'll look like as an adult. So beautiful. Sorry the pictures are so goofy, I was snapping pictures with my phone while she was scarfing pizza.
Monday, November 02, 2009
Sunday, November 01, 2009
This is my absolute favorite picture of the week. Acer was trying on his costume Th afternoon when he decided he wanted a snuggle on our bed. They went up, I followed and Calli snuggled Acer to sleep.
One of the ladies at the Library for the Blind has this tool set she lets Acer play with while I emboss the church bulletin for Calli.
The best picture I have of the two of them on Friday Morning.
Acer in his China outfit waiting for the afternoon bus on Th.
Acer first wore the China Outfit to church on Sun.. Here he's letting loose on the keyboard, think he's more a jazz pianist than a classical one, but he is very fluid, not choppy at all in his playing.
One of my favorites of Mum and Acer. He fell asleep on her during church and didn't wake up for a LONG time afterwards. Good thing Mum is patient.
I really liked the Trunk or Treat as a way for Calli to get her feet wet so to speak. She wore her ballerina costume, and Acer wore the China Outfit he'd worn to church that day. They have a really active church with a lot of good diversity, they even have an outreach for the deaf, with interpretation of the service. Our church is nowhere near as diverse, if we weren't sure we were where God wanted us, probably to help shake things up, we'd go to this church. There were trunks to treat out of and then crafts and games .
Acer wore his China costume to school on Th. His afternoon school was having their Halloween Party so he wore the outfit all day. The parade through the classrooms was a little too hectic for him, he likes to take his time and explore not just march through areas. His one on one aide ended up carrying him through much of the school. He was a little disappointed to find out, when they went to third grade, that Calli was NOT there. Yes, I think Acer thinks, that if he's at a school, Calli should be at the same school.
Just a note on the afternoon program, Acer is loving it. He's learning their rules, learning their songs, and the teacher has not just accepted having him in her classroom, she has gone above and beyond and is learning more than she'd need to to just have him survive in her class. She is always asking the visiting VI teacher about things, and the VI teacher is always coming up with ideas too. It's really been a great experience to have these two collaborating so well to get the best for Acer.
Acer wore his monkey costume to morning school on Friday, I love this costume, I got it the first Halloween he was home, and I got it in a size 4 so it would last. Well, it has, it is just so cute and soft and squishy I'll hate to see it go. He didn't have PM school, so we ran a few errands. The ladies at the Library for the Blind were all over him in his squishy fuzzy cuteness. Calli was a ballerina. I'd figured out that she had a dress she could wear right over her costume, so we didn't have to worry about changing. She was slightly disappointed in not being able to wear her favorite long dangly earrings with it, but survived. She really enjoyed the school party and games and being part of the parade. All new eperiences and she soaked them up.
Saturday Calli went to a Bowling Birthday party that Acer had to miss because he's fighting a cold. From Friday at 4 until Saturday at 5:30 Acer was only awake for a total of 8 hours. He just slept and slept and slept, it was incredible. I'm sure it has helped but, he's still sick. Calli came home from the party after she and Bill went grocery shopping, and then was just aquiver with anticipation until she could dress up. We'd been given two outfits, the ballerina one and a princess one. The Princess one had long sleeves, so with a downturn of the temperature, she switched from Ballerina to Princess. We put her hair up in a bun on top of her head, and then used a tiara she'd brought with her from Bethel. A tiny bit of make up, and Voila! Princess Calliandra made her debut.
We started out after Uncle James arrived to pass out candy; the kids had passed it out before then. Calli started out pulling Acer in the wagon, faster than we were walking, she was psyched up! Acer went longer than he ever had, but he still conked out pretty early. Bill and he headed back while Calli forged ahead. She was out until the sirens signaled the end of trick-or treating, I think she could have kept going for a lot longer if not for that. She did really well with navigating her way to doors. I'd simply tell her where the sidewalk to the house was from the driveway and where she needed to go and off she went, while I stood on the sidewalk. She came home triumphant with a very heavy bag!
Thursday, October 29, 2009
by Ken Moses, Ph.D.
I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.
Read the rest of the article here
I welcome your comments
Tuesday, October 27, 2009
We've had a piano in the house for about a year and a half now, and Acer has always liked to just wander by plunk out a few notes and then wander away. In August, while we were driving to MIlwaukee, Acer started to actually PLAY on the toy piano we'd brought in the car. It was like a switch turned on and hasn't turned off yet. Month by month I can see him improving. I love to watch him play, with his tiny hands and fingers it's just too cute for words.
Calli has been playing for years, she's been picking up new songs as she goes, but Acer... there are times I don't know which one is playing unless I'm in the room. She pushed/inspired him as he could hear her sounding out songs on the piano, now, he's pushing her to keep ahead of him. They will even play duets together. It is so adorable to see, I want to just hug on them, except of course, that would stop their playing.
THE COURTESY RULES OF BLINDNESS
Ten simple, straightforward pointers which encourage sighted persons to feel comfortable and at ease with blind persons, is also helpful to know.
When you meet me don't be ill at ease. It will help both of us if you remember these simple points of courtesy:
I'm an ordinary person, just blind. You don't need to raise your voice or address me as if I were a child. Don't ask my spouse what I want—"Cream in the coffee?"—ask me.
I may use a long white cane or a guide dog to walk independently; or I may ask to take your arm. Let me decide, and please don't grab my arm; let me take yours. I'll keep a half-step behind to anticipate curbs and steps.
I want to know who's in the room with me. Speak when you enter. Introduce me to the others. Include children, and tell me if there's a cat or dog.
The door to a room or cabinet or to a car left partially open is a hazard to me.
At dinner I will not have trouble with ordinary table skills.
Don't avoid words like "see." I use them, too. I'm always glad to see you.
I don't want pity. But don't talk about the "wonderful compensations" of blindness. My sense of smell, touch, or hearing did not improve when I became blind. I rely on them more and, therefore, may get more information through those senses than you do—that's all.
If I'm your houseguest, show me the bathroom, closet, dresser, window—the light switch, too. I like to know whether the lights are on.
I'll discuss blindness with you if you're curious, but it's an old story to me. I have as many other interests as you do.
Don't think of me as just a blind person. I'm just a person who happens to be blind.
In all 50 states, the law requires drivers to yield the right of way when they see my extended white cane. Only the blind may carry white canes. You see more blind persons today walking alone, not because there are more of us, but because we have learned to make our own way.
For more information about gifts, bequests, programs for the blind, or other matters concerning blindness or the blind, contact the local chapter in your area or contact:
The National Federation of the Blind
200 East Wells Street
at Jernigan Place
Baltimore, Maryland 21230
Monday, October 26, 2009
Here is the back of Acer's fancy hair
and different views of Calli's fancy hair before she changed to her flower girl dress.
Friday, October 23, 2009
Thursday, October 22, 2009
Tuesday, October 20, 2009
We have been incredibly busy, and I've been fighting a depression. I've fought myself through the days with the delicious comforting sweetness of my Mountain Dew and have gained ALOT of weight; but there is lightness in my (mental) steps again and I no longer feel so emotionally exhausted.
We have -
Gone camping with the White Cane Campers,
Gone Camping on Drummond Island (tents, no ammenities, Calli loved the quiet and the unthinkable size of Lake Huron but not the uneven ground)
Calli has been in a wedding as a flower girl (beautiful!)
Fought with the school districts as to why no one had enrolled her, even tho' I'd done my paperwork back in June.
Enrolled Acer in a second half day of school at a different school. He now comes home, eats, gets back on the bus and goes for the afternoon. His second day will be Wednesday.
I've dropped being in church band, it was too late for the kids to still be awake when it got over at 9. Acer goes to bed at 6:30 so he can be awake at 6 AM for school. I miss the singing, but Bill needed to be there not only to sing, but also to make sure the sound system was working.
Calli has lost seven teeth since she's been home. Even tho' she knows it's one of us, she enjoys the money the tooth fairy brings. She hasn't spent any of it yet, but it makes her happy to have it.
Calli underwent an exam under anesthesia for her eyes, she was very nervous and scared, but Bill and I were there for her. That was the first day she hugged me around the neck and said 'You are my MaMa and I love you! later she did the same and said 'You are my MaMa and you are Great!' She has since said similar things to Bill. I had tears in my eyes.
She has picked apples and beans and dug carrots and beets at Bill parents (Acer was off on the playscape at the time)
She has grown two inches and gained 4 pounds.
We took a road trip to Milwaukee to see Calli's best friends from Bethel, and my Aunt Marlene. The kids did really well on the trip, their first 8 hour one.
She started Sunday School, and is starting to make friends there.
Calli is doing well in school, her spelling tests usually only have one wrong. She is able to memorize the words, but often isn't sure what they mean, so we do spelling and definitions every night.
She likes school a lot and is really happy to be going and learning everything. For those in the know, she's almost through learning her contractions, yes, all 189 of them in contracted form (grade 2) braille.
I am sure there are events/items I'm missing, I'll try to fill them in as I remember, and to keep up on future happenings.
Hope you all are well, drop me a comment and let me know!
Wednesday, September 09, 2009
The inspiring abilities of the disabled
September 4, 10:43 PM
NY Special Needs Kids Examiner
When your child is disabled, it is very easy to cry over the things you are told that they will probably or possibly never be able to do (and....let's just admit the selfish angle....what you will not be able to do with them). But, just as a disability is not the beginning and end of who a person is -- the loss of what they can't do does not change the value of what they can do.
Sometimes, it's an issue of perspective, even when it comes to a single activity. One of my favorite stories to tell about my son relates to how problem solving skills was one of the only things he did not have a developmental delay in. Back when he was about one and a half, he was getting his preliminary evaluation from Early Intervention. One of the tests that the Developmental Therapist gave him involved a plastic piggy bank toy, through the large slot of which you had to place plastic coins. This was a test of fine motor skills, and at first, the toy was placed so that the slot stretched horizontally, relative to his body. He got that in a few seconds....no problems at all understanding what to do, or doing it. Since it was clear he had at least that much ability, the DT rotated the toy so that the slot stretched vertically, relative to his body, instead. When it comes to the motor skills needed to align the coin correctly and get it into the slot, it would be harder in this direction. Well, Jamie just looked at the toy. He tilted his head. And then he rotated the toy himself, to the optimal angle for him to put the coins in with the most ease (which was actually friendlier than the original angle, as well). Now see, when it came to the motor skills test, and in a subtler way, the do-what-you're-expected-to-do test, my boy failed that point. On the other hand, what he did was commendable, aside from hilarious, when it comes to the problem-solving skills he already had. Inconvenient -- yeah, a bit -- but commendable. So was his poor performance on that test something negative, or something positive? Well, I don't tell the story because it depresses me!
Still, no one considers themselves to have a special-needs child because of what that child is capable of doing typically or "better"-than-typically. And so, it sometimes helps to remind ourselves of the kinds of things that can be possible, and to remind ourselves to stay open to finding and nurturing them. Thankfully, inspirational stories aren't as hard to come by as it can feel like.
Take Patrick Henry Hughes for example. His could be the story of a young man, severely disabled, in ways of remarkable medical rarity. His could be the story of a family that had so many dreams stripped away as soon as he was born, and did not know how many more they would lose as he grew. In some ways, it is. But, in more important ways, it is not. His is the story of a young man who, despite being born without eyes and unable to fully straighten either his arms or his legs, was a musical prodigy before he was a year old. His is the story of a close-knit, happy family, in which his father works the graveyard shift so that he might sit with his son through every class, and so that Patrick can perform in the University of Louisville Marching Band, as half of a two-person team -- him playing from his wheelchair, while his able-bodied father pushes him through the elaborate routines, in formation with the rest of the group. In fact, Patrick's story, which has inspired a moving music video, involves being a speaker and performer around the country and internationally, winning awards, TV and magazine features, a published book, a released CD , and a fine example of good things happening to good people who need and deserve them. How many people are able to say all that?!
When Ma Li's and Zhai Xiaowei's families dealt with the fact that she was missing an arm and he was missing a leg, do you think they ever expected the two to perform such a stunning dance together? Maybe yes, maybe no....but perhaps they should have. After all, the world is full of such stories that turn "WHY?!" into "WHY NOT?!" I'm not just talking about Fox Network's popular So You Think You Can Dance? program, which gracefully auditioned a blind woman for their 4th season, and a woman with Spinal Thoracic Dysplasia, for their 5th. How about 16 year old Kiera Brinkley, a quadruple amputee who recently performed a dance at Julliard? I begin with these stories of dancers who defy the limitations of their body's movement, because the arts are such a quality-of-life thing, to begin with. Inspiration, however, can be easily found when it comes to many kinds of disabilities and many kinds of triumph...from those related to Cerebral Palsy, to those related to learning disabilities. In fact, if you need some inspiration you can carry with you to places that are, shall we say, technology-handicapped, there's even a Chicken Soup for the Soul book specifically related to special-needs kids!
So, parents, what more can I say? When it comes to our special-needs kids, as, in a way, it does with everyone -- both our kids, and ourselves as parents, deserve to have hopes based on who they are and what they might accomplish with our help and support, not on what they have to work through to get there.
Tuesday, August 18, 2009
Calli has been particularly busy, she has attended a two week day camp, with 45 minute commute each way. We had to get up at 6:30 to do it, but she really had fun. It was a FREE day camp run by the Greater Detroit Ass'n for the Blind and Visually Impaired. They also put on Calli's goalball camp. It was fun and independence/life skills teaching at the same time. She had Judo classes (LOVED them), went to visit a firestation, went to Target and was given money to spend (I was told NOT to send money). they went to a museum, played a little goalball, helped prepare lunch, learned to fold clothes, learned to make a bed (note, Calli already knows those last three things pretty well and helps with them all the time) she made crafts and was voted 'Best Judo Student' and 'Most Enthusiastic New Camper' She has already signed herself up for next year's camp!
We also made a trip to Milwaukee to see both my relatives and to see Calli's Foster sisters from Bethel, Jenna and Rosanna. I was really impressed by how well they both behaved. Acer even gave me enough notice to get off the freeway to find him places to go potty. He didn't fuss to much over the 8 1/2 hour drive either. I'd even brought a new toy for each of them and neither quibbled about the fact that we then had to wait to get batteries at the next truck stop. Acer's needed a screw driver to put the batteries in, but I had the batteries, and Calli's needed AAA batteries but I'd misread it and only brought AA. They were patient and I was thankful.
My Aunt Marlene is a wonderful, sweet woman who has failed alot since I last saw her, maybe 4 years ago. Despite the distance, we've kept in touch by phone so we've always felt loved by the other. She is very wobbly on her feet and her memory is going now, it was sad to see. I was really glad I'd brought the kids out to see her. She was very amused by their musical talent and delighted in hearing them sing and play on their musical toys. We also got to see both my cousins, Kathy and Kim, always enjoy their company and wonder why we don't get together more often.
It was really nice to see Jenna and Rosanna and meet their family. They have 3 sisters, and as their mom had taken them on vacation, it was a family of 6 females we got to meet. They drove in from Eau Clair to meet us, they'd been up from Arkansas to visit relatives in EC. We lucked out and ended up with rooms right next to each other. The hotel had a pool and a hot tub and we spent hours there. It was really great to meet their mom, for me, because our adoption stories are so similar. She adopted a daughter, , at 27 months old in late 2006. We adopted Acer at 29 months in May 2007. She adopted Jenna and Rosanna at eight years old in 2008 and we adopted Calli at 9 in 2009. All the children we've adopted between us are at least severly Vi, with Acer's eyes being the worst at totally blind. Probably the best moment was when we decided to walk the block to Boston Market to pick up food for dinner. Boy did we get the looks - Seven kids, five from China, five with canes, two adult females. We were pretty spread out with everyone's different walking speeds. (Acer's pretty fast when he wants to, but he sure can dawdle when he doesn't want to do something.) so we took up about 150 linear feet on the sidewalk.
The kids travelled home well too, and I was overall very proud of how well they behaved.
Okay, so I'm running out of time now, so I'll just post this and post the rest later (with pictures hopefully)
Tuesday, July 21, 2009
Thursday, July 09, 2009
Calli, Malique and Marquez, Volunteers from Wayne State's coaching program. They're giving her pointers on trying to spin the ball on her finger tip like a basket ball. This isn't a goalball skill, but she's determined to master it nonetheless.
Jesse, college age player and volunteer
I took these with the video camera and it was an experiment. These are the only ones I have tho' so I'm posting them. This is the day Calli's wearing the hip pads. I think she could fit another person in there with her! or she could use this under a skirt and look like a southern belle. I'd forgotten to put the video card in so I only have a few that went on the puny internal memory.
Wednesday, July 08, 2009
Friday, July 03, 2009
So now, I have to wonder how much it would be worth it this year, or would we be better off waiting just one more year and letting life get more settled and Acer to get more matured.
Adding to my decision making is the fact that we've had three busy busy weeks in a row and I'm thinking that however good this is, it'd be better to stay home and be a family. I'll talk it over with Bill, but think he'll agree.
Saturday, June 27, 2009
I will say that going from one child to two has kept us on the move, I think two is not twice as much work it is work squared!
Calli is doing well, still emotionally adjusting, but the mourning process will work itself out. Acer quite likes having a sister and has said that we need to go back and bring home another one!
She's starting to make friends at church thanks to VBS and then made more last week at goalball camp. The coach said she was an athlete and a great player (for only playing once before, she's a good wing now and will be a better center once she can actually hold the ball - her hands are so small!)
We went to the Dr last week and he gave a prelim diagnosis that put her on the Retinits pigmentosa spectrum. We're going to a specialist in a couple weeks and they'll do some genetic testing to determine what her status really is.
Life is continuing on, and we're all easing into a new form of family, so if I don't comment as much, I still try to read my groups at least once a week. and visit those blogs that I know of.
Have a great summer
Thursday, June 18, 2009
A mother to three children with visual impairments, adoptive parent Velleta Scott is an expert in training on opathalmic disorders and parenting the once unknown. Velleta sat down with some of the questions she once had and gives her firshand invaluable perspective.
What is it like to parent a child with a visual impairment? As a mother of three adopted daughters with visual impairment (VI), I get asked this question a lot. One of my daughters is totally blind in one eye (no eye tissue or optic nerve), and has about 20/70 corrected vision and nystagmus (uncontrolled movement of the eye) in her other eye. She is considered moderately visually impaired. The other two daughters are considered to have severe visual impairment. One daughter can see bright colors and large objects, but cannot read any print or see objects smaller than a cat. The other has light perception only. My two daughters that have severe VI use white canes when out of the house and read Braille instead of print.
Considering the adoption of a child with a visual disability. Visual disabilities cover a wide spectrum of conditions. I am going to focus on the some of the questions that might arise when reviewing a file of a child that may have severe VI, and what life is like in a family that includes children with visual impairments. Keep in mind, some visual disabilities or visual conditions may require nothing more than a surgery or two, glasses, and regular follow ups with an ophthalmologist.
However, for those children with VI that is not correctable or has a lower likelihood of success with surgical intervention, perhaps my family's experience will shine light on what this looks like.
What is blindness or visual impairment? When prospective parents are reviewing the medical information of a child with ophthalmic issues, one of the first questions they usually ask is "Is the child "blind?" However, most people have a very specific definition of blindness. Ask the average person on the street to define blindness, and they might say, "When a person can't see anything - just darkness."
That answer only accounts for about ten percent of the people who are legally blind. Being legally blind generally means that someone has a visual acuity of 20/200 or less in the better eye with the best possible correction. People who are legally blind can have vastly different visual acuities, ranging from the ability to read large print, to seeing light only (commonly termed light perception), to seeing nothing at all. For this reason, throughout this article, the term visual impairment (VI) is generally used rather than the word blind. VI is a more general term that accommodates the wide range of vision possible for this condition, as compared to the word "blind".
What can we do about his or her medical condition? The question we eventually began asking, and the one we believe the prospective adoptive parents should ask, is, "What is required to give this child the best quality of life?" To answer that also requires answering, "What are the probable outcomes of this child's ophthalmic condition?" It is very difficult to determine a young child's visual acuity. It is almost impossible for medical professionals to give parents a definitive statement about how well a child will see without being able to examine the child (and sometimes even after the exam). They may be willing to give ranges of outcomes, but much depends on different factors in an individual case - how old the child is, what caused the visual impairment, and what (if any) medical intervention has taken place in country. In many cases, accurate information about any or all of these is simply not available.
In general, the earlier the intervention the better the potential for improving vision or for halting deteriorating vision. During a child's development, the eye and brain are trained to work together to focus and interpret visual images. Many professionals believe that the critical time for developing the brain/optic nerve interactions required for full vision is from birth to about 3 years. Most professionals also agree that up to age 8, optic nerve and brain connections are still being formed in the child. It is generally thought that beyond age 8, no new brain and optic nerve connections will be formed. Thus, the earlier the intervention, the better the chances for improved vision. However, even with medical intervention, a child may or may not have "normal" vision. In some cases, the potential for improving vision may be very limited, or may be unknown, especially after age 8.
So, what does it mean to have a visual impairment? In terms of everyday life, less than most people think. As an adoptive parent to three VI daughters, I can honestly state that their visual impairments are the last thing I, or anyone who knows them, think about when asked to describe them. With the technology available today, even severe visual impairment can be relegated to the status of mere inconvenience. This statement is difficult for many fully sighted adults to comprehend. We use our vision so much, it is almost beyond understanding of how we would function without it. But in many conversations with VI adults, it soon became apparent that visual impairment is not the huge disability than most people assume. It is inconvenient, surely. But it will not stop a person from going to college, getting a good paying job, or having a family. We know many people with severe VI who are parents, who have college degrees and work in ordinary white collar or professional jobs. The only real disabilities we see in our children are the ones other people try to put on them.
Can we do this? This brings us to the question many prospective adopters ask when they are reviewing a file - what will this child need in life? Can we provide what they need? Again, I want to caution that it can be very difficult to determine visual acuity in young children. Children generally use the vision they have very well, and compensate for a lack of vision in ways adults have a hard time comprehending or even noticing. As a child grows, a parent is often in a position to observe better than a doctor what their child can and cannot see. A parent will observe if their child can see the family cat, the toy car on the floor, and how close they might sit to a television or computer. A parent can tell if the child sees their smile, and from how far away. The parent will notice if the child often misses steps, or appears startled at going from one surface to another.
But what does a parent do with this information? The good news for American parents of children with VI is that there are many resources available for them - and many of them are free.
By Federal law, children with VI are required to have access to free educational opportunities. For these children, this means early intervention is available as soon as they are diagnosed. A team of education and vision professionals will work with the family and determine the level of services that are required. The team will determine if the child will be a Braille or print reader, or if it would be beneficial for the child to learn both. They will use parental input and their own training and experience to determine whether a cane will help the child navigate. They will also help the child develop the skills needed to live a normal life.
So what does this mean in practice? It can mean that a child is given a cane if required and instructed in the use of it. It can mean that they start Braille or large print at the pre-school level. It can mean they are simply followed by the team, with regular visits/evaluations, and any needed modifications are decided on a year by year basis. Once a child starts school, any specialized equipment needed for them is provided free of charge. In addition, by law, the child must have the services of a teacher who is certified in teaching visually impaired children. Children cannot be forced to attend residential schools for the blind.
Most children with VI attend their local school. My daughters with severe VI receive the kind of assistance that is typical for most children with VI. They attend their local elementary school. Since it is only a few blocks away, they walk to it by themselves, as part of their training in independent mobility skills. Once there, they are in a regular classroom for all but one hour per day. Although we do not live in a large school district, they have the services of a full time certified vision teacher, who was hired to teach these two girls. They walk unassisted from their regular classroom to the vision teacher's room each day for specialized instruction in Braille and cane usage. The rest of the time they are in the regular classroom receiving instruction as does any other student. They have laptops that are adapted especially for the blind that the school district provided. These laptops allow them to do their work in the regular classroom, print it out, and hand it in just like any other child. They are completely mainstreamed and have no problems keeping up with their class.
Please keep in mind that my daughters are considered severely visually impaired. Most children in the VI category are not as impaired as our daughters, and would not need this level of accommodation. For a large print reader, all a vision teacher may need to do is make sure that all classroom materials and books are in suitable font. This level of accommodation is all that is needed for our daughter who is blind in one eye only.
But what about home life? Our home life is really about the same as any other family's. Our daughters learned their way around our house very quickly, and do not use a cane in the house. They are normal kids - they do their hair and clothes themselves, make toast or prepare cereal for their breakfast, set the table, and help with supper preparation. They love riding horses and bikes, swimming and tumbling, doing crafts or singing, and going hiking and camping. We have exactly the same expectations for them as we do for our sighted children - college, career, family, etc. There are some challenges which include ongoing lessons in independent travel and translating printed items (such as appliance labels) into Braille. But it is truly not a big deal in everyday life. We just get our library books in the mail from the state Braille library (with free postage) instead of from down the street.
Our families were quite nervous when we first announced our decision to adopt our daughters. They were worried for us, that it would be "too much to handle." Now they see how well our children fit into our family, and that the level of commitment is similar to that for raising any child (a lot!). They are still amazed at hearing the girls read Braille aloud at the same speed as a sight reader their age reads print, but they are getting used to it. They are very happy that our children have joined the extended family, and they are very proud of their progress.
If we adopt, what could our child with VI hope for in the future? Our two daughters with severe VI were school aged when we brought them home. They have told us of the pain of wanting to go to school in their orphanages, and not being allowed to because of their visual impairment. They are so grateful just for the opportunity to go to school each day. They have told us the only thing they thought they could do when they grew up is be a massage therapist, as that was about the only option for blind people in their home country. It took quite a while for them to believe they could dream about getting married or being a doctor, teacher, or mother. They thought that wasn't possible for them. They told us they had encountered other blind children and adults begging on the streets in their home country, and were afraid that was how they would end up. Now like any other children they are learning to dream - to decide if they want to be a doctor, a teacher, a veterinarian. It is an amazing thing to watch them realize that visual impairment doesn't define them. Although it is an inconvenience, it isn't going to stop them from achieving their dreams.
I know that visual impairment is a very scary special need for many people and can cause some real soul-searching. It was so for us when we first considered adopting our daughters. But now we honestly have more issues around who misplaced the tooth floss than homework being done in Braille. If you are waiting to be a parent, please consider these children with visual impairments. Our daughters have brought incredible joy to our life in the short time since they have joined our family. The challenges are so much less than the rewards. When I think about the bleak future my daughters might have faced in their home country, it is almost past bearing. Please consider opening your hearts and homes to one of these precious waiting children. They are waiting for families, and they need them so much.
Less than 6 months after coming home, one of our older daughters was asked to write an essay in school about what love is. This is what she wrote in Braille:
"I cannot see the love, and I cannot holding in my hand, but I know what the love is. Love is my mom help me wash clothes. Love is my mom help me folding clothes. Love is my dad was help me fix my bike. Love is my dad help us get more money for the house. Love is my dad bounce me on the trampleling. I cannot see the love, and I cannot holding in my hand, but I know what the love is."
So do we.
Wednesday, June 17, 2009
Sierra is a fun loving puppy who needs a forever home. She rings a bell to go outside and is also invisible fence trained. She was recently placed at a home, the owners loved her and said she was very smart and sweet. Unfortunately she had to come back to us because she didn't get along with their older dog. Since having her, we have been able to put her with other dogs and have had no problems. She has gone home with an employee and played for the whole weekend with 3 large breed dogs with no issues. Sierra enjoys lots of playing and cuddling and would really like someone to love her forever.
Sierra is up-to-date with routine shots, house trained and spayed/neutered.
As long as everything goes okay, we'll bring her home to Mum and Brother James' house tomorrow
click here to see the sweetie.
We all, Acer, Calliandra, Mum, James' son Brandon and myself visited with her today. Brandon and I went back with James to make sure James liked her too. I did forget to ask tho' what kind of bell she's supposed to ring to go outside.
Saturday, June 13, 2009
I've discovered that I can post pictures to my facebook account easily, so I've moved my facebook profile up so others can see parts of what I've posted and perhaps click over and see the rest of them there. Yes, it's cheating, but it'll do until I can figure this our a bit better than I have so far.
Vote eyeless pooch
Local rescue dog deserves stardom on magazine cover
By LAURIE MUSTARD
Last Updated: 11th June 2009, 3:05am
Attention all dog-loving Sun readers, of which there are billions -- perhaps more!
Your vote is needed immediately, and continually, until the contest ends, to win local rescue dog Riddle -- who was born without eyes -- the magazine cover shot for Modern Dog Magazine.
Riddle's rescue "mom," Sally Hull, of Hull's Haven Border Collie Rescue here in the 'Peg, explains: "Riddle has become the darling of the rescue world all over Canada and the U.S.A., not to mention England, Denmark and Australia. His fame is obvious in the voting on Modern Dog Magazine's website, where he has garnered over 1,800 votes in six days (putting him at No. 1).
"Riddle is a one-year-old border collie who was born with no eyes. Although he is completely blind, he does almost everything all the other dogs can do. Riddle swims, plays fetch and runs like the wind. Riddle can even catch a ball on a verbal clue. He is the most amazing dog I have ever met.
"We are hoping to use his courage to teach children that having a disability does not mean you can't."
Riddle was turned over to Hull's Rescue three months ago when his owner could no longer take care of him. He was aggressive and terrified of everything, but with proper handling and being treated like a regular dog, has progressed to the happy, playful, loving pooch he is now.
After considerable thought, and endless treats, Riddle has accepted the prestigious position of ambassador for Hull's Haven -- a lifetime appointment.
To vote for our hero, go here
Give Riddle the stardom he so richly deserves. What an inspiration this gorgeous guy is. Vote!
article found at:
Tuesday, June 02, 2009
So, she is off and running to see what sort of stuff we need to do to accomplish both my goals. I am now just waiting for her, or the district's special needs coordinator's call back to let me know the next step.
Friday, May 29, 2009
Three people on a team, and the ball is like a thick skinned basketball with bells inside. Teams bowl the balls towards each other, and throw their bodies in front of the ball to prevent goals. It takes place in a standard school gymnasium, and spectators are asked to be quiet instead of cheering their team on, so that players can hear the ball coming.
With the risk of repetition, here is what is on the Paralympics site:
Goalball is exclusively a sport for athletes with blindness/visual impairment. It was invented in 1946 in an effort to rehabilitate the blind veterans from World War II and was introduced to the world in 1976 at the Paralympics in Toronto. Goalball competitions are set apart from all other Paralympic events due to the unique atmosphere inside the playing venue. The object is to roll the ball into the opponent's goal while the opposing players try to block the ball with their body. Bells inside the ball help to orient the players indicating the direction of the on-coming ball. Therefore, while play is in progress, complete silence is required in the venue to allow the players to concentrate and react instantly to the ball. Goalball is played by male and female athletes with blindness/visual impairment and athletes wear ‘blackout’ masks on the playing court, which allows persons with varying degrees of vision to participate together. The game consists of two halves of 10 minutes each. The governing body of Goalball is the International Blind Sport Federation (IBSA) and in 2008, the sport is played in more than 50 countries worldwide.
We have discovered the county next to ours' Parks and Rec. dept has set up monthly goal ball games so off we went. Acer is too young, another couple years for him, but Calliandra was old enough to play. Today she and another girl learned the basics, how to throw it and how to block it. Calli is a natural, flopping and blocking and throwing the ball, the other moms there were pretty impressed.
Calli liked it so much I signed her up for a week of three hour classes next month. I also signed her up for a two week day camp where she'll learn other things including judo. Can't wait to see how she likes that! (both camps were free - excellent!)
Acer had fun during all this as there was a good playground just outside. He and Mum were out there for an hour and a half.
And yes, I was a bad camera mom and didn't take any pictures.
My brain really doesn't wake up until 9 AM. It doesn't matter when I get up, I can function, but I certainly can't be cheery or speak in more than monosyllables.
Wednesday, May 27, 2009
We're slowly working on getting a schedule that works for all of us. The one we have currently seems to leave me extra grumpy at times.
I think that I'll do more short posts, like the last one, from my cell phone so that I don't forget to post things. That way everyone is still on the loop, yet I don't have to spend a lot of time here in front of the computer.
take care all and if I'm not commenting on your blog as much, it's because I don't get to visit as often :(
Sunday, May 24, 2009
Wednesday, May 20, 2009
She's doing okay with the dogs, still a little nervous about them, but not paralyzed in fear which I had worried about.
We tried on one drawer full of clothes and started our bags of stuff to go to LuLu (cousin Lucy) , then we walked over towards Mum's and met her on the way. Calli uses her sight a bit too much and her cane information a bit too little for my comfort. We're going to have to work on her recognition of where the streets start as she'll walk right out onto them. I've switched her cane to one that is too long for her, but more responsive, feeding more information to her hands. She has enough vision to follow me, so I started walking beside and behind her to make her work at it more. If she's still going to trust her eyes more than her cane, I'll put her in sleepshades as we walk.
Right after we got back with Mum, Acer's bus came and then it was lunch time. We ate and then shot off to Bill's work to bring Bill his wallet. Everyone was really glad to meet her and we distributed the small gifts we'd brought back for them.
Had a relatively good evening and seemed to have cured Calli's sleeping issues by letting her sleep with Acer. Thurs. Uncle David will come over and help us lower Calli's loft, that should help too, as she should have more space and feel more comfortable up there. For some odd reason our upper level ceilings are shorter than the 8' normal and so the loft is REALLY close to the ceiling. May drop it by as much as a foot I think.
Having a good day so far, lovely weather, and another drawer of clothing tried on.
Tuesday, May 19, 2009
On the way home we stopped for our traditional Erma's frozen custard. Our place to celebrate with delectable frozen goodness came through again for us.
After we unloaded, Alex, Bill and the cutesome twosome went off to buy Alex a new phone as she'd lost hers on the trip. I unpacked and sorted and downloaded my brain.
They all came back just before Alex's grandparents came to take her back home (sniff, wish we could have kept her longer, like forever).
Time to shower and then head out, more later
Monday, May 18, 2009
Sunday, May 17, 2009
Saturday, May 16, 2009
miss my Husband and Son. I've always been more independent, accepting
separations from people as part of life, so this missing them so much
is surprisingly hard for me. We leave in just over 24 hours and I
can't wait to see them again.
For us here, after two days of cooler weather and hazy conditions,
last night's wind seems to have cleared the skies and we're looking at
an 88 degree day today. I'm hoping that I'll be able to be picked up
for the non-walking part of today's sightseeing, but am not sure yet.
Yesterday's resting really helped my foot a lot, but it's already
spasmed once today already and with that, my plans for a full day's
sightseeing went out the window.
We had a good meal last night, we found a restaurant that at least had
a picture menu with the title in English so we knew what we were
eating. No more spicy tripe surprise for us, we learned our lesson.
Calli and Alex went into half a dozen places to ask before we found
one that had the English menu, but it was worth it.
out sight seeing. I seem to have tendonitis in my right Achilles and
about killed myself yesterday even walking slowly. If the Summer
Palace was too much, today's trip to The Forbidden City and the Great
Wall would put me in coffin.
So I sit, and do exciting things like catching up on my comics and
playing 'Solitare 'til Dawn'. I tried to go on facebook, and in the
middle of my session, it froze up and then switched over to Chinese
Characters. Way too many for me, I only recognize about 5, not enough
to handle a website.
I'm going to take my computer down to the front desk and see if they
can help me. I think if I can sign in again, then I could have things
go back to English but we'll see.
No blogger (this is by email if it even gets posted) and No Facebook.
What will I lose next - Yahoo groups?
Slowly losing my technology here.
Friday, May 15, 2009
we can't reach the blog right now to fix Alex's link to Bethel so I
thought I'd let you know that there's a link to Bethel on my Sidebar,
We are in Beijing in a very nice hotel. We went to the Summer Palace
today. Unfortunately, our guide is not as talkative as I'd like. I
think she felt she didn't have to say as much because I've already
been here. I had to tell her twice and then a third time bluntly that
I wanted her to talked to Alex more because Alex has never been here
and needed to learn these things. After that she really stepped up
Prayers for My Right Achilles Tendon, it's been sending up shooting
pains and has really slowed me (and the rest of us) down. Think I
need to ice it and put it up tonight.
On and odd note I was able to get gel for curly hair at 7/11 of all
Thursday, May 14, 2009
Sorry it has been so long since my last post.
We are now back in Beijing. Tonight we are staying at Bethel, which is
the wonderful foster home Calli lived in. When arriving here they were
so welcoming. Everyone said Hello and shacked our hand and helped us
around. A little bit later we were going to go for a walk. All of the
kids were dressed up in dresses and tux's. Man the kids looked so
adorable. Then Calli came out, oh boy did she look stunning. She has a
dress on, her hair in curls and she had a tiara. Instead of the walk
we went into the playroom and danced. These kids were having so much.
It was then that Heather started telling me the stories of some of the
kids. Oh, and yes all of the kids here are blind. One of the boys has
such a sad story. At his previous orphanage he was left in the care of
two retarted men, who beat him and literally left him in a closet. He
was beaten so bad to the point of not functioning. When he came to
Bethel he asked "Are you going to beat me to?" That right there made
my eyes start welling up. For any kid to ever ask that is horrible.
Another little girl was abandoned then was taken into the care of a
man who made her beg. Then he died, after she went to another person
who made her beg. She fell sick and was abandoned again. Then she was
brought to Bethel. She didn't know how to walk, he didn't know she
could choose what clothes to wear.
Most of the other kids here were abandoned because they were blind or
had health issues, some have been in orphanages all their lives. In
china it is illegal to put children up for adoption because of the one
kid law. So if you don't have what you want or have an unhealthy baby
you abandon them and try again. Then they came to Bethel. Bethel was
like their Heaven. Here they have choices, they are taught English,
French, and improve on their Chinese. They haven't had the ideal
lives and yet they smile. They have fun and they are happy. I guess
it's better than the lives they could live. It is so heart breaking to
come here, you hear stories of the kids and you want to wrap them all
up and take them home. To make sure they never get hurt again. I even
asked Heather if we could bring them all home. These kids have a
special place in my heart. After seeing this NO ONE has the right to
ever complain about their lives. If these kids have gone through this
and are still happy and full of smiles we should be too.
I will write more as the words come to me.
Here is the link to Bethel. Go to sponsor a child to read more stories.
I will also be putting some videos up.
Wednesday, May 13, 2009
Sunday, May 10, 2009
So, going back to Friday when we were still in Hefei. We had a visit from our guide, Jane, with our paperwork from Hefei and she helped us work on the paperwork for Guangzhou. The girls had headed out, walking to a bakery Jane had taken us to earlier in the week. Alex had really liked a blueberry danish (lacking a better term) from there and was determined to get another. So, they walked up and found the store dismantled! Great was her dismay and angst. They took a taxi back and went to a closer bakery that did not have the desirable danishes. We headed out that evening for dinner and had a fresh made pita with an egg baked into it. Boy were they yummy. Our ice cream exploits that evening were not quite so fortunate, we somehow ended up with butter flavored icecream. The other two ate it, but not me, I barely put butter on my potato, this was way too much for me.
Saturday we got packed up and waited for Jane to take us to the airport. Jane got the girls each a great gift, a calligraphy version of their name, on handmade paper, done by a real artist. She also told Alex she'd get her a job teaching English anytime she wanted. We flew out and thankfully I had a much better trip than the one from Beijing to Anhui. When we got to our room we discovered that we were once again on the 18th floor. That seems to be a theme this trip, the 18th floor. We'll see what we get to in Beijing! OH yes, Mr Wu, our driver in Hefei, succeeded in getting me a flip flap, a solar powered flapping flower pot. We'd tried earlier, but I'd scared away the vendors because I had my video camera out. Mr Wu made sure I got one, buying it when I wasn't there to scare them.
Sunday we went to the pearl and jade mart, we looked around for a couple hours and didn't buy anything. Alex looked in many clothing stores for herself and we tried to buy both a dress and a pair of shoes for Calliandra, but she was having none of that. There seemed to be a lot fewer vendors there too. We'd already noticed that there were a lot for vendors here around the White Swan but I was surprised to see it hit the vendors at the jade and pearl mart too. Not sure why. That evening we went swimming, I found a cute bathing suit for Calliandra, it was two pieces, but it was a tankini with a skirt so she is covered. I brought three suits, but they were all too small. One was passable, but this is better. This was also Mother's day, and Bill and Acer called to wish me a Happy Mother's day. I was really pleased to get that greeting from the Little Man. He also said he wanted to send Rugby and Lobelia to China to get me. I think that means he really misses me. I also got me first I love you from Calliandra. What a great Day!
Today we had to go get our medical exam. What a difference from 2 years ago when there was a room filled with adoptive families. There was only one other family there when we got there and they were done soon after. We were sometimes in the room with the other people at the Dr's and sometimes we were back in the room where we'd done the exam years ago. Oddly enough, the tile in the room looked new. It was pink, with teddy bear picnic type pictures and it said Happy Birthday. A whole floor tiled just in this.
While we were walking, Elsie, our guide, kept getting calls from someone named Mike, who was lost. Finally after we were done with the exam and back in the room, she told him where we were and our room number. Elsie and I finished up our paperwork, she left and then Mike, and American form Vermont, arrived. It turns out that he was looking for her because she was looking for us to interview us for an article about the adoption process. After Mike and Elsie finally met in our room, they headed out to lunch and we did the same before coming back here to meet with Mike for the interview. He is currently freelance, but if he sells the article somewhere, he'll let us know.
Today I was able to do fancy hair for the first time on Calliandra, and I was able to get her into a lovely damask dress I'd brought, so we just came back from taking our Red Couch Photo. Think i managed to get one with both a smile and a head up. I'll have to see when I download them. You'd think that with just one child, it would be easy to get a good photo, for me, the non photo pro, not so much.
Well that catches me up. I have another scheme for posting pictures, it involves Bill, so I'll have to see if our inter marriage communication can handle it.
Saturday, May 09, 2009
Going to sleep on it again and see what inspiration hits.
On the plus side, we are in Guangzhou, and I did successfully connect the computer and sign up for internet.
We've had a boring day, mainly hanging out and taking the plane to here.