Category Archives: Children with Rare Conditions & Special Needs

A Mother’s Hope: the Society Can be More Friendly Toward Those with Albinism

How there’s, too little help provided to this special needs group of people, how there are more that the government can do, to help this group of special needs people to live better, off of the Front Page Sections, translated…

As I had my birth by caesarean in March of 1999, the gynecologist tried to help me feel better, stated, that the “melanin is absent”, perhaps, he’d feared, that I couldn’t, accept it!  They didn’t show me my daughter immediately.  I’d gone to the nursery to see my baby girl, and she was, so very, beautiful!  The natural curls, with the pale complexion, made her look like those, porcelain dolls.  Did I cry?  Yes I had, the night I’d given birth, for the entire night, then, I’d, started, looking for data online.

There’s a one in 15,000 chances of albinism, it’s due to a recessive gene that’s hereditary, or the genetic mutations.  And there are multiple types of albinism, the first, with the worst eyesight; the second type, brown hair, a bit better in vision.  My daughter was the first, the conditions of nystagmus caused her to not be able to focus her sight, reading and study is, quite hard for her.  She’d had to, put up with the looks from her external environment, needed to put on a lot of sunscreen to protect her skin.  When she’d made the lower grades, she’d felt she couldn’t measure up to herself, when she did too well, she couldn’t, measure up to everybody else’s, standards, truly hard for her. I’d thought, that everything will go smoothly after she was diagnosed and treated, but, the ears also needed the melanin to function, and other than her deteriorating sight, her hearing was going away too, and she needed the hearing aid, and, all of these made her get ill psychologically.

As I’d gotten involved with the albinism group, I’d learned, that sight and hearing aren’t the only difficulties, some had cerebral palsy, autism, mental retardation, epilepsy, etc., etc., etc. as the side effects.  And there are those who can’t, get past it inside their minds.  Are we all upset?  No!  We’d still work our hardest, to pass our days, some became skilled massage therapists, some tested into the public offices, some are musicians, some, shop owners, some designed the animations, and there are the YouTubers too!

the statistic of albinism in a pie chart

found online

I truly hope, that the Department of Health Sanitation and Welfare can list albinism as a rare condition, to unify the name.  The first trouble we face is, what department do we go to to get the conditions treated?  What sort of a practical help can the medical profession give?  How can the education be offered to this group of children normally?  Like for the physical education course, out under the scorching sun, the accommodations made to these students; the teachers can write using the bigger letters, and harder, to help them see better in class. And surely, to teach the other students in class about albinism, so they become more accepting, to set up the foundation of support, for the communities, the society to understand this condition, I hope that everybody in the society can speak for the individuals diagnosed with albinism in the future.  There are, the lacking in social welfare, I hope, that the foundations can get in touch with those who’d been diagnosed with the condition actively, to help and to offer assistance to them in life.  Currently, there’s the lacking in the standards of funds allotted for the assistance, in the years of usage of the needed equipment as well, all of these is being, amended into law, I hope, that our voices will be heard, by the Department of Sanitation and Welfare.

All the things, I still want to tell.  Anyway, I hope, that the government departments will become a sturdy support, standing behind those who’d been diagnosed with albinism, to help the entire society become friends, with individuals with this, rare condition.

And so, this, is on how there are the help offered, but, the resources are too hard to get, because, there’s only, a tiny proportion of the population with this condition, which means, that it won’t get listed as a insured condition by the national health insurance systems, which will make it harder for the families with these individuals with the conditions, as there are multiple complications that came with this condition, like the mentioned, the deterioration of hearing, and others.  There’s a lot more that the government can do to help these special needs individuals in the society here.

2 Comments

Filed under Awareness, Children with Rare Conditions & Special Needs, Education, Life, Perspectives, Properties of Life

A Mom Who is Hearing Impaired

The worries of this mother, which was what prevented her from getting her son the help he was in need of, until the social worker reached out to her, got through to her, and she was able to get her son into the early intervention program, that gave him a chance at a better future, translated…

After I’d Come to Understand the Hearing Impaired Person’s Understanding and Expressions of Language Being Different than Ours, Whether it be Getting Treatment, the Assessments or the Meetings to Discuss Matters, I’d Always Helped Mom File for a Sign-Language Translator…………….

the Child Who Didn’t Know How to Get Along with Others

The first time I saw Hsian-Hsian at the sanitation offices, he was chasing the other kids, wanted them to play with him, he’d gotten to the other kids, to see what they’re doing, then, grabbing the items the other kids were working on, and quickly enough it’d, caused someone to cry.  The few parents, after they’d led their own young away, and gotten their children to settle down, Hsian-Hsian started signaling to his mother, that he wanted to go off to play with the toys—normally, children his age can already speak a few simple sentences, and so, this nonverbal exchange caught my attention.  Not long thereafter, I saw his mother used the words, plus the signs to communicate, and that was when I’d come to understand that she’s, a hearing-impaired person.

illustration from UDN.com

from before the mother received the help her own young son was in need of, because she feared hat she couldn’t communicate with the physicians…

When Hsian-Hsian was vaccinated at the sanitation offices, because he didn’t speak a word, and his height, weight are both, under average, he was evaluated by the physicians, and given the diagnosis of “developmentally-delayed.”  The physicians also worried, that he may have inherited the hearing impairments, which can cause his language development to come delayed, suggested to the parents that he should be taken to the major hospitals for an evaluation.  And yet, Hsian-Hsian’s mom didn’t, and so the nurses at the sanitation office filed for a social worker in early intervention for her, and so, I’d met them, for the, very first time.

After over an hour long of talk on paper, I’d understood the situation at Hsian-Hsian’s home, and discussed with his mom the goals of our working together.  She’d told me, that she’d not set up the hospital visits, because she didn’t know how she was going to be able to tell the doctor, to discuss the situations, the conditions of her own son, and can only use the lipreading means, to guess at what others are saying to her, which made her felt, ill-at-ease.

After understanding, that the hearing impaired persons has a differences of interpretation, of understanding language than we do, no matter if it was the visiting of the physicians’ offices, the assessment with the therapists or the discussions, I’d always helped mom find a translator, to help her understand the situations, and, slowly taught her how to file for the services on her own, to help her communicate with the outside world more smoothly.

Accompanying a Family in Moving Onward

After the multiple assessments, we’d found, that Hsian-Hsian had cognitive, language, and kinesthetic developmental delays; but luckily, he is normal in his hearing, and can receive the sounds from outside successfully.  I’d immediately signed him up for the clinic’s early intervention programs, and set him up to start in the public preschool systems in his neighborhood.  During the time, I’d, helped his mom file for the assistance of parenting lessons at home, to give her the support she needed in teaching the young son.

From getting to treatment, signing up for the early intervention courses, along with other resources, to letting Hsian-Hsian’s mother file for the services, to sign up, I’d, assisted her from the side.  Later on, my function changed into reminding, and following up with her, to make sure that Hsian Hsian’s mom knew to use the techniques that the early intervention instructor, and the therapists’ techniques to interact with her own young son, and felt that she’d accompanied her son as he grew up by the day.

After a year and a half, mom, Hsian Hsian and I, we’d gone to the N.T.U. Hospital again to get the latest of Hsian Hsian’s early intervention assessment reports.  It said, that his abilities had improved greatly compared to before, and now, he doesn’t only initiate the interaction with the physicians, as he got out of the treatment room, he would interact with other children, “can I play with you?  I have my toy car with me!”  seeing how happy he is, there’s that sense of moving that came to me, I’d felt,  the meanings of early intervention programs, to know the needs of the families, of the children to give them the support they were needing, to help them catch up to the developments of children their age, to help them move forward into a brighter future.

And so, this, is how much the early intervention programs had helped this particular case, and, the mother was originally timid in getting her son the treatment, the assessments he was in need of, because she’d feared that her own disabilities will keep her from expressing her concerns to the physicians, but, with this foundation’s help, setting her up with a translator, she communicated better with the doctors whom her son was getting treated by, getting him the help that he needed, and now, he’s, catching up.

Leave a comment

Filed under Child Development/Education of Children, Children with Rare Conditions & Special Needs, Education, Life, Perspectives, Philosophies of Life, Properties of Life, The Education of Children

Growing Up Safe & Sound is a, Blessing

On the necessity of these, early intervention programs, supporting the parents of these, special needs children, translated…

Every year around Children’s Day, in the preschools, kindergartens, and elementary school across the island host an assortments of activities to celebrate, and the news channels also, zoomed in on these activities more or less, and, the children that were caught on tape, they usually have the bright smiling faces, active, or maybe, they even, fought for the airtime, and started chit chatting to the cameras, having a good time, celebrating this day that’s, especially, saved, for them.  All of these, ordinary footages, however, for the parents with children in the early intervention programs, may be, painful to watch, for that is what they longed to see, but, may or may not get, in the, distant, futures in their, and their own children’s, lives.

From before, I’d viewed these as nothing more than, normal and ordinary, but as I’d started working in the facilities for the handicapped, I’d, started, feeling different: being born healthy, to grow up safe, that, is sometimes, the best form of, blessing.

the necessity of these, early intervention programs…

will make a huge difference in the lives of special needs children…photo from online

Most parents would imagine, that as their babies were born, everything will be smooth sailing, and yet, after awhile, some parents would discover, “hey, how come someone else’s child can already flip her/himself onto her/his stomach, and my baby couldn’t yet?”  or, “why is it that we’re never on the same wavelength as our own children?  No matter what we do, our child just cried, fussed, and started throwing the tantrums?”, after getting the professional opinions, all of these parents usually receive the thunder-struck responses, to a lot of times, the physicians can’t even tell the parents, what exactly was, wrong with their children.  To these families, leading their children to the starting lines is hard enough as is, let alone, the “ordinary scenes” we’d described at the start of this article?  In the process of coming of age, they’d weathered through more twists and turns, and, although, early interventions isn’t a fix-all, but, it does, offer them the sturdy support that they are all in need of.

As I watched those footages on T.V., I’d thought of the children in my care, those who are placed, in the early intervention programs.  Some of whom, had too much of a stretch out of their muscles, and as the instructor massaged them, they’d started crying aloud from the pains of the stretches; some are silent, that melted down, because they can’t get the world to understand what it was that they needed or wanted; some can’t stand, some can’t sit, those were the ones who’d thrown their major-scale temper tantrums when placed int eh swing chairs, or the standing racks, to train their muscle tones………and yet, all of these, are ordinary goings-on of an early intervention center, what the normal general public don’t note.

early intervention programs that will make a huge difference in the lives of special needs children…photo from online

This was my primary drive to set up the topics with the UDNpapers this time, through the words, to help more know these children who are, too complicated, and their families too; even if the roads up ahead are filled with the twists, the turns, these children still used their own separate paces, with the help and companionships of trained professional caretakers, grow up, step, by step.

And so, this, is what we, “normal” people fail to notice of this group of special needs children, and we don’t normally see what’s going on, because, a lot of us just, don’t care, because we got enough on our plates, and, we take for granted, that our own children are born healthy, with no problems.

Leave a comment

Filed under "Professional" Opinions, Awareness, Children with Rare Conditions & Special Needs, Lending a Helping Hand, Perspectives, Philosophies of Life, Properties of Life, Social Awareness, White Picket Fence

Compelled to NEED, My ADHD…

This is still, a, RE-action, to the, adult parents’, “desires” of the child…

I’m compelled to NEED, my ADHD, because, only when I have it, my mom will, shower me with, all the attention, and dad won’t, demand that I make straight A’s.

Compelled to NEED, my ADHD, because we all know, how the world expects less of children with, special needs, and, if I keep on, faking these symptoms, I’ll get off, easy.  Compelled to NEED, my ADHD, it’s the only thing that’s, keeping them from, going AT one another’s throats, because, my ADHD, when it acts up, well, everybody comes to shower me, with, all of their, undivided attention.

Psychologically, I, enjoy the undivided attention, the showers of extravagant gifts if I get a point higher on my school test grades, but that’s all, added extras.  I’m compelled, to NEED my, ADHD, primary because it keeps my parents’ anger off of each other (or they’ll be going AFTER one another throats, and I will surely, end up as, an orphan that’s for sure!), so they can, direct their attention, towards ME.

As I am, the MEDIATOR, had always been, in their, marriage, and, if I don’t’ use this “mental condition” to my ability, then, what good is it???

Leave a comment

Filed under Abuser/Enabler Interaction Style, Child Development/Education of Children, Children with Rare Conditions & Special Needs, Mental Health Issues, Messed Up Values, Overbearing Parents, Psycho Parents, Socialization

Cheng Who’s Learning to Control His Impulses

The techniques of behavior modification, positive reinforcement, and using the rewards system, it’d worked, in helping this young man to get rid of the unacceptable behaviors, translated…

Through Observations & Beating Around the Bushes, Xiang-Yun Chien Realized, that Reason Why Cheng Did What He Was Doing May Have to Do with His Mother’s Passing, and How He Lacked that Sense of, Security; Cheng was Very Anxious, Bitten All Ten of His Finger Nails to Out-of-Shape……………

Switching Tracks, All Because She Enjoyed Teaching

Everybody who knew the Bo-Ai Development Center of the First Social Welfare Foundation knew that the handmade soaps are a popular item, for the household chores, the essential oil soaps, the transparent soaps, are all good for gift-giving and self-use.  While, the woman who’d led these developmentally delayed youths to make the soaps, is the special eds instructor who’d worked for more than two decades at the Bo-Ai Foundation, Ms. Chien.

Chien majored in visual broadcasting, after she graduated, she’d worked in the related industries, but slowly, found that she was really interested in a career in teaching, so she’d, switched tracks, and started working as an afterschool program instructor.  Later, she’d gone up north to a church sponsored mix-aged development center to work as an early childhood educator, this was the very first encounter she’d ever had with children with Downs’s Syndrome, and she took to them very quickly.  With her getting more and more involved in early childhood education, she’d started wanted to improve her own skillsets, to provide more assistance to the parents and the children.

After hearing of the First Social Welfare’s Special Eds Specialists, Chien in an introduction of a friend, started at the Bo-Ai Development Center, at first, she worked as an educator of an early intervention program, later, she’d started coaching the students who are working with a skillset; as she got the tasks of making the handmade soaps, Chien went around, to learn the skills to make the handmade soaps, and used her visual broadcasting major knowledge on the handmade soaps, with her design, the handmade soaps made by Bo-Ai all had the visually appeasing looks.

But, for Chien, other than taking the students to make the handmade soaps, she’d wanted more to help them live on happy and healthy.  She’d used her heart of caring, concern, tolerance, and warmth to treat all of her pupils, hoping, that with her help, they will, improve their qualities of living standards.

Take Cheng in her class for instance, as he’d started at the center, he was easily worked up, whenever things didn’t go his ways, he’d started, screaming, to express his upset, and he’d also, done things that aren’t, allowed for the classes: taking the fees the class collected for the cleaning up, stashing the money inside the spaces between the trash can and the trash bags in the restrooms, or inside his own shoes, so nobody can find them.

查看來源圖片
early intervention programs like this is, absolutely, needed! Photo from online

Through observing him, and beating around the bushes with him, Chien found, that reason why Cheng was misbehaving, may have to do with how his mother died, and how he’d lacked that sense of secure attachment; Cheng was too anxious, bitten down all ten of his fingernails, and, as Chien got closer to him, he’d hug his head tight, and dodged her, like he was, a fearful animal.

To lower Cheng’s sense of alarm, she’d first, accepted, and accompanied him, slowly, build up their, relationship.  Later, Chien started using the “positive reinforcement” techniques with Cheng, every time he’d done something well, she’d immediately, praised him, “Wow, you’re so amazing!  You helped me so much!”, and, as she left the class to go to a meeting, she’d asked Cheng to take care of her belongings, to help him establish that sense of responsibilities that he needed to have, and built up his confidence level, as well as help him feel more secure.  And because of all of her praises, and affirmations of a job well done by her, Cheng became more, and more, stabilized.

Using the Right Means, to Help the Individuals Have a Good Life on Their Own

And yet, Cheng still had a behavior that gives everybody a huge, headache—taking without asking.  Normally, we all know, not to take things that don’t belong to us, even if we want to use the items, we must get consent from the owners of the objects, but, for some of the mentally decapacitated individuals, differentiating between what’s yours and what’s mine, is next to impossible, and, wanting it, so I go and take it is, matter-of-fact to them, even as they’d learned, that this behavior is improper, when they see things that they wanted, it would still be hard, for them to control their, impulses.

In the behavior modifications, there’s an important technique called “environmental control”.  Toward the impulses that Cheng has of taking things without asking permissions, Chien would do her best, to put away everything that may tempt him to take away, to reduce the chances of him taking things without asking, and surely, it’d, made his behaviors improved.  But, every now and then, Chien would left the items out on the tables, to test Cheng, and most of times, he would pass, but, there were, a couple of times he still,, couldn’t, control himself, and so, the scissors would be gone.  And, although she knew, that it was Cheng who took the scissors, but knowing, that it would anger him if she confronted him for it, so, Chien would ask all the students, “what do we do, when the scissors have, disappeared?  We can’t do what we need to do”.  After Cheng heard, he’d told her, “I have some, I’ll bring them tomorrow.”  And the following day, he brought back the scissors, with Chien’s name on it back.  Through small tiny inquiry, Chien knew, that she’d, gotten through to Cheng a little more then!

And, even though all the techniques employed with Cheng all worked so far, Chien still wanted to help him better his life more, by helping him to become more connected to and with, others.  She’d used the positive reinforcement techniques of the “Stickers system”, for instance, if Cheng was able to not get mad, not hit, not take without asking, he could get the points for good behavior for that day, and, as he’d accumulated enough points, he get to trade the points in, for some prizes he wanted from Chien.  All these rewards became Cheng’s goals, and naturally, it’d become, a huge motivation for him to control all his, bad behaviors.

Even though, there are still more problems that he needed to tackle, but Cheng is well on that path to being able to have more impulse control now, and, it’d made us all, who work in the Bo-Ai Center, to see that he will be able to, live on his own, one day in the future.

And so, this place not only gave these special needs students the life skills training, it also teaches them how to adapt to the outside world, so that one day, they may be able to, live in the world outside, and, what this woman did for this young man is, helping him get rid of his unacceptable behaviors using the techniques of positive reinforcement, and the young man trusts his instructor enough, to follow her words too.

Leave a comment

Filed under Children with Rare Conditions & Special Needs, Education, Helping Behaviors, Lending a Helping Hand, Life, Properties of Life, Socialization, The Education of Children

The Children in Protective Custody Increased by the Hundreds Annually, Couldn’t Go Home, the Government Adopts Them Out

The Social Services of Hsinbei City estimates, that there is an increase of about a hundred young children placed by the social services annually, about eight hundred young children placed by the government, and cared for, by the government.  The manager of the Hsinbei Domestic Violence Prevention Center, Hsu stated, after the placements, the system will help the families of origin to readjust to be a good enough environment for the children to be returned back; and if it’s confirmed that the families can’t work, then, the children are, adopted out, the adolescents are trained to have a viable life skill that can help them live on their own.

Hsu told, that younger children who are placed out of their families of origin, means that the families aren’t safe, without the provisions of proper care for them, after placing the children out, “restructuring of the families” is an important task, so the help in finding work, parenting lessons, and setting up a resource provision system, like patching up the relationship among the members of the families, to provide more resources needed to care for the children.

Hsu pointed out, that the children in foster care right now, a lot have physical or psychological problems, like the drug-addicted babies, with the symptoms of withdrawal, developmentally delayed, A.D.H.D., then they would need steady medical treatment interventions, and the early intervention measures; if the child in at school age, then, the system also helps them in adapting to their new schools.

social services with young children they need to place…

查看來源圖片
photo from online

This is, quite, contradictory, to the government’s “complaints” of how there’s a sharp drop in birthrate isn’t it???  Children in foster care, in social services, trending now, off of the Newspapers, translated…

Hsu said, other than the children growing up, the parents also need to have added abilities to them, to find other families as resources for help in caretaking, as all the requirements are matched, then, the children will get, returned back to the families of origins.  But the return to the families of origin is by progression, from supervised visits, waiting until both parents and children are stabilized, then, the return home steps are taken, slowly, increase the time spend at one’s own, families of origins.

Shortest, it’s a few months, longest, the children may NEVER be returned to their families of origin, Hsu stated, that there were the families with children placed out, in a short time, found a strong enough set of resources, for instance, other family members with the money chipping in, in two short months, the young children were, returned; but there are also the cases of after four, five years, the children still didn’t get returned back to their, families of origins too.

Hsu said, that if the families of origin are drug-addicts, with multiple times on record of prison sentences, then, these parents will get their parental rights, terminated, and the young children will get adopted out, from within the country, then, matching the children up with foreign families.  And, for children older than fifteen, and still couldn’t go home yet, there are the plans to help the kids to pay for their own education, to find work too.

And so, this system is, set up, quite well, and, this is also, very awful, because these children in foster program are on the rise by the years, and most of whom came out of families with teenage mothers, who couldn’t care for them.  This is the problem, that came out of teenage pregnancies, and there’s a need, to get these younger generations more educated on the matter, so they don’t keep on, cranking them babes out.

Leave a comment

Filed under Abandonment of Children, Bad Parenting Behaviors, Childhood, Children with Rare Conditions & Special Needs, Parenting/Parenthood, The Teenage Years

A World Without, A.D.H.D.

How am I, gonna, rip, that BAND-AID off???  Hmmmmm, let’s think………(this is me, thinking!), OUCH!  It went, off!

A world without A.D.H.D, no more children, “hooked up” to them, Ritalin meds, to help them sit still, to keep their, concentration, no more disrupting the class, speaking out of turn, yo, put a MUZZLE on it already, huh???

A world without, A.D.H.D., the world IS, without A.D.H.D., there are only, the VARIOUS kinds of learners, we have our, visual bunches, the auditory kids, oh, and the tiny “proportion” of that group of bodily-kinesthetics, who needed to, touch EVERYTHING, that can’t sit still (wow, that sounds a whole lot like, the checklist of symptoms of A.D.H.D, doesn’t it???  It sure D-O-E-S!

“EARTH calling space cadet!!!

focus, child!!! Photo from online

A world without A.D.H.D. that reduced the problem down by half, and now, we can, focus on, tackling the other HALF of THAT equation, helping children with dyslexia (as ADHD “cohabits” with dyslexia, in a lot of the special needs children out there!), but, without cutting these individuals’ brains open, and DISSECTING the lobes of the brains, to see exactly, where that wrong WIRE is, how the HECK can we figure out, WHAT exactly, went “wrong” with the neuronal branching???  We can’t, so, we’re, DEADLOCKED, again!

Stop labeling the children as whatever it is, MR (oh wait, there are those, who are, M.R.’s!), ADHD (bodily-kinesthetic), autistic spectrum, etc., etc., etc., etc., and just TREAT those kiddies as people already…

Okey dokey, this session of SPECIAL EDS for ADULTS is over, now, pay your tuitions here, oh, and BTW (by-the-way!!!), it’s now, FOUR cents per article per reader here, just “deposit” your “cash” inside the “collection plate” on your ways in, ways out, either way, it works for the Q-U-E-E-N………

Leave a comment

Filed under Child Development/Education of Children, Children with Rare Conditions & Special Needs, Education, Life, Philosophies of Life, Properties of Life, The Education of Children

Just Want You to Be Happy

The plans that, fell out of hand, with the rare condition diagnosis of their, young infant, daughter, the causes of the condition, still, not yet, known, translated…

From When Our Daughter Was Born to When She Got Sick, the Trials My Wife and I Weathered, Simply Can’t Get Put into Words, the Original Growth Plans We’d Set Up, All of a Sudden, Fell Out………

At First, it was, Hard for Me to, Accept

When Xiang-Xiang was only six months old, my wife and I noted how she seemed to, be developing, at a slower rate than infants her age, and we’d, hurried up and took her to the pediatrician.  After a thorough check, the pediatrician told us she was, normal, we’d both felt, relieved, but, at the age of one, Xiang-Xiang still couldn’t, flip herself over, and it’d, caused my wife and I panic.

To know what had happened, we’d had the pediatricians to conduct a thorough assessment on her, and in the end, we’d received the diagnosis of “Dope-Reactive Dystonia, DRD); meaning, that the pediatrician can only deduct that something wasn’t quite right with Xiang-Xiang’s neuron signaling system, and couldn’t tell us exactly, what was, wrong with her

From the joys of my daughter’s birth, to being told she’d had a rare condition, the changes in my wife and my heart can’t be put into, words, the original plans of her growth, all of a sudden, fell, out of whack.  At first, it was, quite difficult for us to accept this, but, being Xiang-Xiang’s parents, if we can’t even, cope with it, who will, give her the help she needed, on this, long road, of her life?  Only facing this head on, working hard, to find the cause of her condition, working with the pediatricians to treat her, that’s the only way, we’ll find the right treatments for her, so she could, have a, better life.

illustration from UDN.com

圖/Mrs.H

But even so, as I looked at how the conditions of my daughter was very, unstable, I’d felt, helpless, upset, and, because she isn’t health, there are, many accidents, situations that’s, surfaced as she grew up, going to the hospitals became, something too regular, and we’d often, gone for “vacations” at the hospitals too.  On top of that, due to how “unique” our daughter’s condition, the doctors couldn’t set up a clear and precise treatment plan for her, and it’s up to us, her parents, to make the detailed, observations, to finding the assortments of information, data online, to help us communicate with the pediatricians; and because of this, we’d taken a lot of time daily, energies too, to stay close to Xiang-Xiang, and documented the changes in her, closely.

Making Her Happy, that’s, the Most Important Matter in Our Lives

Because Xiang-Xiang loved going out, to observe everything around her, we’d often, taken her out for strolls.  I would put her in my lap, talk to her, play with her, sometimes, we would watch my wife, busying about, wait until my wife’s done busying, and hugged her.  Although Xiang-Xiang couldn’t speak a word, but, from her eyes, we can see, that she was, happy.

Xiang-Xiang is a laughing girl, whenever her tiny needs were met, she’d, started, giggling loud.  Her needs may be a sound we made, or a movement, even, that tiny response we’d, given to her, and that giggle from inside of her, can last for a long, long time.  We’d also found, that Xiang-Xiang, loved holding conversations, because she couldn’t speak a word, she’d, used the various noises, movements, facial expressions, to express her self, and she’d demanded that we “hear” her from start to finish, and so, we played that game of, “Charades” a lot at home, we all worked together, to guess what Xiang-Xiang wants to, tell to us.

Actually, the needs and desires of a child like Xiang-Xiang is quite, simple, being with those whom she enjoyed being around, it’s, the best thing in their lives, while we’d both, done all we possibly can, to fulfill, the tiniest wishes that our, young daughter  has.

To this point, we still have no clue, what’s, caused our daughter to not speak, to not flip on her tummy, to walk, and to, feed herself, but no matter, Xiang-Xiang is our, baby.  As parents, our only hope for her, is that she’s, safe and healthy, and happy throughout her life, while we shall, keep on, holding her, tiny hands, to lead her, to grow up slowly, on this, hard road of life she’d found herself to be one, to become, the strongest backup for her, in her life.

And this, is the love, the devotion, of parents with a special needs child, and the cause of the conditions of this young child is unknown, and the parents had, started to, accept that, they may, never find out what exactly, had caused their daughter’s, condition, but, they’d learned, to give her the love, the support she needed, on this road to life, and that, is the most, important sort of support, of love, that any parents can, give to, their, own young.

Leave a comment

Filed under Because of Love, Children with Rare Conditions & Special Needs, Life, Parent-Child Interactions, Parenting/Parenthood, Perspectives, Properties of Life

Forever Accompanying You

A developmentally delayed child that contributes to her family in her own way, translated…

My daughter in developmentally delayed, and a companion for the families, she’d accompanied the three generations.  The years changed, she will always be, a white sheet of paper, with the words of gratitude out of her lips, smiling.

Before the birth of my daughter, she’d been blessed upon by my grandmother.  My grandmother became a widow at twenty-eight, lonely her whole life, toward this baby great granddaughter, she’d felt that she was a grace from God, that she needed to love her very much.

After my daughter was born, we saw that she was limp in her limbs, with diminishing capacity, after a long road of treatment from the physicians, nothing worked.  During that age there’s no early intervention programs, and I had to work, can’t stay home to look after her, so I can only, move in with my own grandmother, and she’d, welcomed us with her arms wide open.

“Dear, come, a hug!”, grandma opened up her arms, my daughter ran toward her, like she was a pet that my grandmother kept, she’d slept with my grandmother too at night.  My daughter accompanied my grandmother for a whole of twelve years.

After grandmother passed, I’d placed her in an institution, on Monday I’d sent her into boarding, on Saturday, I’d taken her home.  This was a difficult period for her, as she came home happy on Saturdays, but when Monday came around, she’d started crying hard, throwing her tantrums, rolled on the ground, refused to get taken away, she was only fourteen then.

My mother moved in with me at her old age, I’d taken my daughter home so my mother could have company, during the daytime, my daughter went to daycare, and arrives home at four in the afternoon, and my mother looked after her with great care, they’d loved and cherished one another so, until my mother too had, passed away, my daughter had accompanied my mother for a whole of ten years.

After I retired, I’d taken her to a ton of group outings, to help socialize her into life of the community, my life, is her life too.  Companionship is the BEST gift of life, companionship doesn’t cost anything to hire someone from the outside, with the families there, keeping each other warm.  Although my daughter is not intelligent, but putting her in the right place, she’s still, a contributor.

And now, she’s, in her fifties, and as I got older, I’d found how wonderful she truly is, she’d had a ton of love from home, very spirited every day, it’s like the Holy Bible said, “everything works together, everyone benefitted.”

And so, this, is the “use” of this developmentally delayed child to the family, she’s great companionship for the elders, and now, her mother realized this finally, and now, the mother and daughter will live together, until the end.

Leave a comment

Filed under Children with Rare Conditions & Special Needs, Lessons, Life, Observations, Old Age, Perspectives, Philosophies of Life, Properties of Life, Socialization, Stories of Hope, Story-Telling, Translated Work

The Sixth Grader Ran on the Track Field, Became a Vegetable, the School Mandated to Pay the Families

Knowing this student’s heart condition, the instructor still made him run, that’s why the school is mandated to pay!  Off of the Front Page Sections, translated…

Four years ago, a sixth grade boy with a heart condition, ran around the school track, fell down, he was rushed to the hospital, and became a vegetable, the families filed a suit toward the country, the Taichung District Court found that school needed to pay the boy’s families until he turned twenty, the amount of over $40,000N.T. per month for the medical fees, and over $20,000N.T. per month extra until he’s sixty, that the amount of over $4.36 million N.T. needed to be paid to the boy and his mother for emotional distress.

The parents told, that filing the suit against the country is to get justice for their son who’s “growing up but never waking up”, and they hoped that their son will be the last victim of the negligence of the school campuses, the school already filed for an appeal.

The verdict stated, that the boy had a congenital heart condition, isn’t fitted for hard exercises, and all his teachers knew this.

On the morning of October 20th, 2016, the homeroom instructor told the whole class to get on the track field to practice running, and the instructor stayed in the class, not gone out to keep an eye on the students, allowed the boy to run two laps, the boy started swaying left and right, limping, and started panting, turning pale, along with other symptoms that he was not will.  The homeroom instructor saw, but didn’t call the ambulance immediately, the student was carried by another instructor to the nurse’s office, where the nurse performed CPR, until the paramedics arrived.

The judge believed, that the homeroom instructor wasn’t monitoring the boy when he was running, and not paid enough attention to how he was afterwards, and as the boy passed out, she’d not called the ambulance on time, that it all fitted into negligent in care, that the school should pay for the damages on behalf of the country.

And so, because you weren’t paying enough attention to this student with a HEART condition, and you made him run the laps, that’s why you’re, responsible, for his death, and the school got sued for it, because of the teacher’s not paying enough attention to the student’s health conditions.

2 Comments

Filed under Awareness, Being Exposed, Carelessness of Adults, Cause & Effect, Children with Rare Conditions & Special Needs, Choices, Cost of Living, Death by Negligence, Excuses, Lives Lost, Negligence, Negligence Homicide, News Stories, Properties of Life, Tragedies in the World