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Just wanted to say hello to everyone in here, as I have just picked
up this echo from my hub. I had seen it before, but was not totally
clear on the discussion until now.
As some already know, my youngest son (4 years old now) has Down[...]
godo at sports and has a good pitching arm. We were outside today
playing catch.
He has been a real blessing and a wonderful child. One thing we[...]
still need to get through is he needs an operation for
Hirschsprung's Disease. It is where a section (at the end) of the
He has a clean bill of health (including heart tests) otherwise.
Once we get through this operation, he should be in much better
shape. No long term issues.
Was wondering if anyone is familiar with any of those operations?
Looking forward to discussion with everyone.
Greetings!! Hmm....is there something we should change in the
description, perhaps?
Excellent!! Our daughter (25) also has Down Syndrome. Not only is she
doing
well, she's just been awarded the George Klukas Achievement Award for personal growth in a person with Down Syndrome (via the Down Syndrome Research Foundation: www.dsrf.org). We're very proud of her!
They're new to me, but like many parents of kids with DS, we've had our share of surgeries and panics! Our daughter had leukemia at age 3, a few other procedures, and then a major stroke at age 16. She's now Left side hemiplegic and uses a wheelchair, but still smiling! :-)
I should have looked for the description early on. I thought it was
only for people that survived some type of adversity (based on the
echo tag). Once I found the description, it make more sense to me.
We have been working around our son's bowel issue since he was born.
It is difficult to get a procedure done when there is no "clear and
present danger at that moment", but this does need to be fixed. The
risk of not doing it long term is worse.
Still working with him to increase his vocabulary. That will keep
him from getting as frustrated at times when he acts out due to
people not understanding what he wants. He knows more sign language
than I do. :)
Yes, it can be tough to get the medical types to recognize the realities
of life!
We enrolled (all of us) in a sign language group for toddlers. The theory is
that all children have needs before they can speak, and using sign
language
(so called "signed English") helps prevent frustration. We still use a little - it's handy in a noisy place!
What is incredible to me is the amount of medical professionals that[...]
people need an medical refresher course! It seems to be a battle
with some to bring them up to date.
Not a bad idea. I have learned some of the basics from our son and
his teachers. :) He has been getting better at verbalizing.
I have just picked up this echo from my hub. I
had seen it before, but was not totally clear on
the discussion until now.
As some already know, my youngest son (4 years old now)
has Down Syndrome. He is only mildly effected from it,
causing some delays. It took him alittle longer to walk
(now he runs), drink from a cup, etc.
He is doing all those things now, but his speech is still
developing.
He knows how to say many words and completely understands
just about everything you say to him.
He is also very godo at sports and has a good pitching arm.
He has been a real blessing and a wonderful child.
Looking forward to discussion with everyone.
A losing battle. When our daughter was born in 1986, the pediatrician of record told us to put her in a home and forget about her. I fired him
that night.
Hi & welcome, Mark! Recently you wrote in a message to All:
days after Nora's birth, when the pediatrician's diagnosis of DS had just been confirmed, the gynecology resident accosted me outside our room to ask... in essence... why I hadn't been weeping & wailing & gnashing my teeth. I told him about Judy, a former student of mine, and added that
I'd
be quite content to have a daughter like her. :-))
Uh-huh. IIRC, kids with Down's syndrome walk independently at
3
yrs. of age on average... just as Nora did. One of the common characteristics of DS is that various muscle groups tend to be stronger than
IOW he's a typical boy in many ways although he may have
reached
some milestones later than others of his age generally do. One of the
I figure he probably understands more than some other adults realize. When Nora was around the same age I realized I had to simplify
my
delivery if I expected other kids (of supposedly normal or higher intelligence) to understand what I was attempting to say. I agree that both
speech therapy & sign language may be very helpful for kids who can't get their tongues around the words. :-)
Yes. A mother of two once told me she often wished her
"typical"
son was more like the one with DS, and a mother of four told me the one with
DS was the light of her life. I don't have other kids of my own to
compare
with, just a whole bunch of students of various ages. But otherwise I
can
relate.... :-)
The medical professionals need to get up to date on facts and stop
living in their own world..
it's amazing how badly wrong they can be sometimes -- but perhaps it's proof
of the wonders of the mind?
One of the days this week when I dropped my son off at
school/daycare, I got to see him take the "Apple" with his name on
it and put it on the tree. I was VERY impressed. 4 years old, he
was able to find his apple (the one with his name on it), and put it
on the tree with the other kids that were present.
Very cool! He impresses me more and more each day!
when the pediatrician's diagnosis of DS had just been
confirmed, the gynecology resident accosted me outside
our room to ask... in essence... why I hadn't been
weeping & wailing & gnashing my teeth. I told him
about Judy, a former student of mine, and added that
I'd be quite content to have a daughter like her.
We had a similar situation. After they first told us
that our son had DS, they sent in a "counsler" to talk
to us and make sure we were "ok". I couldn't believe
they did such a thing and sent the person out of the room.
They treat it like some horrible disease -
which is far from the truth.
We are happy with whatever we were given.
Just wanted to say hello to everyone in here, as I have
just picked up this echo from my hub. I had seen it
before, but was not totally clear on the discussion until
now.
As some already know, my youngest son (4 years old now) has Down
Syndrome. He is only mildly effected from it, causing some delays.
It took him alittle longer to walk (now he runs), drink
from a cup, etc. He is doing all those things now, but his
speech is still developing. He knows how to say many words
and completely understands just about everything you say to
him. He is also very godo at sports and has a good
pitching arm. We were outside today playing catch.
He has been a real blessing and a wonderful child. One thing we still need to get through is he needs an operation for Hirschsprung's
Disease. It is where a section (at the end) of the bowel
lacks nerve cells and causes bad constipation. He is due
for the operation later this year. Otherwise, he is
completely healthy. He did have an operation when he was
first born (duodenal atesia) which is where the connection
between the stomach and small instestine is blocked.
He has a clean bill of health (including heart tests)
otherwise. Once we get through this operation, he should
be in much better shape. No long term issues.
Was wondering if anyone is familiar with any of those operations?
Looking forward to discussion with everyone.
Greetings!! Hmm....is there something we should change in the description, perhaps?
I should have looked for the description early on. I
thought it was only for people that survived some type of
adversity (based on the echo tag). Once I found the
description, it make more sense to me.
Still working with him to increase his vocabulary. That
will keep him from getting as frustrated at times when he
acts out due to people not understanding what he wants. He
knows more sign language than I do. :)
When Nora & I returned home, after her birth, a public health nurse
visited us once a week... ostensibly to weigh the baby. She seemed to regard
inspecting me & my housekeeping as her chief responsibility, however. On one
occasion, for example, she went to the kitchen to wash her hands although the
bathroom was closer. Then another nurse took her place. This nurse was very
different. She said I had a wonderful rapport with Nora, i.e. the first nice
thing anybody had said about my parenting. I reckon she must have given
me a
passing grade because we heard nothing more for the next fifteen years. :-))
I learned as a pre-teen to not sell a DS person short. Many do not have that
exposure to what they can offer. I recently heard an actress interviewed about
her DS sister. When her coat was stolen from school, and everyone was trying to
rile up her outrage about the act, her retort was "But someone was cold, and
needed the jacket."
Our son used to "skoot" on his butt very fast on
the floor.
He never crawled. He went from skooting to walking
and then to running. :)
There is one very unique thing with our son.
I have heard most children with DS have a large
straight line on the palm of their hands.
Our son has a straight line on one of his hands,
but not the other. I'm not sure why or what that
could mean, if anything.
He understand most everything. His big problem is
trying to express himself in words. He is getting
it though, just taking a bit.
We have a total of 6 kids. Only one between the two
of us (being our son). Everyone is unique and special
in their own way..
Even among "typical" children & adults, generating speech requires a more complex skill set than understanding speech. Kids
who are ready to learn how to express themselves in words may be
able to use gestures & sign language to cover the transitional
period during which they still have difficulty using oral speech.
Nora went to a preschool group in which both were used together. The
group included kids who had developmental delays for any number of
reasons ... not just kids with DS... and contrary to some people's
fears, we found she didn't become overly dependent on sign language.
While it's a useful skill to have in one's repertoire, the majority
of others don't understand it. The net result, in Nora's case, was
that it faded as her oral speech improved.... :-)
I know blindness, and am familiar with helping adults
adjust to its onset later on in life. IT even took me
awhile to wrap my head around some of that, because I
was born this way, it's the only world I've known <grin>.
contrary to some people's fears, we found she didn't
become overly dependent on sign language. While it's
a useful skill to have in one's repertoire, the majority
of others don't understand it. The net result, in Nora's
case, was that it faded as her oral speech improved.... :-)
This is always good, but there are many who've bothered
to learn sign.
I know blindness, and am familiar with helping adults
adjust to its onset later on in life. IT even took me
awhile to wrap my head around some of that, because I
was born this way, it's the only world I've known <grin>.
But eventually you *did* manage to get your head around
it... and you realized the learning curve might be steep for them as
well.
Our young friend & her mother were thrilled to have an opportunity to work on echolocation recently with a blind woman from
out of town. They'd just attended a workshop where this woman was
one of the presenters... then she took them out to the street for a
private lesson. When one of Nora's classmates was in a similar
situation I'd often see him on the street with a sighted classroom
aide. I think our friend & her mother learned more in just one
afternoon. :-)
Yes, there are. As teachers Dallas & I worked with
students who were learning Signed English... going into more detail
here because you seem to have some knowledge of the subject matter. Basically, Signed English is a word-for- word translation of
everyday English. That's the variety of sign language most hearing
people are familiar with. Kids in school love it because they can
talk to friends on the other side of the room without making a
noise. Teachers such as Dallas & me turn a blind eye... i.e.
assuming you will pardon the expression ... because they recognize
it's a project the kids are doing in another class & one has to
strike while the iron is hot. Within a week or so, we'll be back to confiscating notes & reading them aloud or chuckling over the fact
that we have replied to what somebody in the back row whispered to a
friend across the aisle & carried on without missing a beat. In the
room down the hall we get paid for knowing who forgot a C#, but very
few kids understand the implications.... ;-)
The three of us also took an evening course in American
Sign Language during Nora's hospital stay after her stroke. The
instructor was a deaf person ... unlike other instructors we've had.
I noted with interest that the grammar & word order are different,
and that it's not kosher to mirror what you see the instructor
doing. You're supposed to copy the hand signals in reverse.... :-)
My lady's eldest daughter learned sign, as she has
deafness in one ear, and a Sunday school program she
attended in Florida was very inclusive and got their
deaf members involved in all their church programs.
HEnce, when she was a clerk at a fast food establishment
years later the deaf folks who liked to gather for coffee
gravitated toward the line she was working at the counter,
as they didn't have to write out their orders on a slip of
paper, but could converse with her naturally using sign.
Even if you can't do things in the "normal" way the
important thing is that you get them done, and can
live a full life.
Even if that's as simple as using our dry measuring
cups to measure liquids
Good for them! Over the years I have noticed that some denominations seem more receptive to folks with disabilities than
others. When I was growing up, there were two families with
offspring in wheelchairs who attended the same church my family did.
For as long as I remember there has been a ramp into the church...
and when renovations were made to the church hall & office area,
i.e. some time before Nora was born, an elevator was added. At the
other end of the continuum, there was a woman in this echo years ago
who said the members of her church had shunned her family because
one of the kids had a learning disability & they interpreted it to
mean the family weren't good Christians... (sigh).
Even if you can't do things in the "normal" way the
important thing is that you get them done, and can
live a full life.
Absolutely... you do what works! In our bathroom we have
a key chain with a stuffed animal suspended from a toggle switch.
Before that... when Nora was too short to reach the light switch...
we attached a bit of dowelling to it as a less expensive alternative
to the commercial product we'd seen in the home of a friend whose
husband was quadriplegic. Although Nora's needs have changed we're
still using the basic concept of modifying the switch so she can
turn the light on & off by herself. If other people think we're
weird, chances are they already realized that before visiting our
home or before we invited them. :-))
Even if that's as simple as using our dry measuring
cups to measure liquids
I hadn't thought of using dry measuring cups that way, but
I think it might work well for Nora too. She often finds it
difficult to read the numbers on the graduated cups associated with liquids. Thanks for the suggestion. :-)
... using his arms to push himself around?
If he has difficulty getting his tongue around the words
because
his tongue doesn't quite fit his mouth, that's not unusual for kids with DS.
connotes inferiority, not quite as good as. Whereas, using
"alternative" to describe these different methods indicates
that it works just as well.
You'll always hear or read us stressing the term
"alternative" because utilization of "substitute"
connotes inferiority, not quite as good as.
when we teach folks adjusting to blindness these
techniques we teach them with the student under
sleepshades, so that he/she learns them as a totally
blind person, and understands at the gut level that
the residual vision remaining is not the reason they
are successful using them.
You'll always hear or read us stressing the term
"alternative" because utilization of "substitute"
connotes inferiority, not quite as good as.
Makes sense to me. I did the same without thinking about
it.... :-)
when we teach folks adjusting to blindness these
techniques we teach them with the student under
sleepshades, so that he/she learns them as a totally
blind person, and understands at the gut level that
the residual vision remaining is not the reason they
are successful using them.
Yes... sighted folk often shut their eyes when they are concentrating on input from other sources, which your students must
also do. And they may be pleasantly surprised at how much they can
hear after a bit of instruction. Our young friend & her mother were
so thrilled when they noticed their voices would sound different if
they held a cushion close to their mouths that they couldn't resist
showing us what they'd learned. To us as musicians it may seem
obvious. But we weren't born knowing these things... we just paid
our dues earlier. ;-)
Actually, he would use sit in an open indian style and
use his legs to skoot. It was a combination of a hop and
skoot using legs (sideways on the ground) and hopping on
his butt.
I had read that the crease tends to be a straight line on
kids with DS, but that isn't always the case. There are
cases of people without DS that have the same straight line
crease, but they are rare.
Getting the proper movement in the tounge seems to be the
trick with our son. When I work on words with him, I say
them slow and in sections. Making a sound and then turning
it into a word. Like "TTTTTTTTTTTTTRRRRRRRRR uck".
Once he masters a word, he likes saying it over and over.
He will say truck and bus all the time when he sees one
while we are driving around.
* Origin: Wits' End, Vancouver CANADA (1:153/716)
It isn't that he can't do something, it just might be
on a different timeline. We are all unique in our own
way. That is what makes the world go around..
Uh-huh. Nora could do the splits when she was very young... other
folks practise for years before they can do that. In her case the "stretch"
muscles developed sooner than the "bend" muscles.
When I was thirty-five I realized I could play baseball as well as
the average ten-year-old. Maybe I'm not a total failure in PE... I'm
just a
slow learner! I found the experience quite gratifying, at any rate....
You'll always hear or read us stressing the term
"alternative" because utilization of "substitute"
connotes inferiority, not quite as good as.
Makes sense to me. I did the same without thinking
about it.... :-)
YEp, a lot of what we perceive is through the language
we use to describe it <g>.
Our young friend & her mother were so thrilled when they
noticed their voices would sound different if they held a
cushion close to their mouths that they couldn't resist
showing us what they'd learned. To us as musicians it may
seem obvious. But we weren't born knowing these things...
we just paid our dues earlier. ;-)
Indeed, musicians do have an advantage there <g>.
I've told more than one person that if the miraculous
were to occur tomorrow and I'd find myself with full
20/20 vision I probably would be so confused and
disoriented I couldn't cope for quite a time, as my
brain wouldn't know what to do with the input it was
now receiving.
Adding sensory input could potentially be as debilitating
as taking it away.
You'll always hear or read us stressing the term
"alternative" because utilization of "substitute"
connotes inferiority, not quite as good as.
Makes sense to me. I did the same without thinking
about it.... :-)
Agreed. One example I often used in my English classes
is that the Inuit... whose survival may depend far more on a precise knowledge of which is which than either yours or mine does... have
36 different words for snow. For us all that really matters in the majority of cases is whether we need to take turns shovelling the
stuff, what is likely to happen when people drive or walk on it or
when it melts & refreezes, and whether we can still get around with
a car or a wheelchair.
Once I have learned the name of a person or a plant or an animal, I begin to notice details I hadn't noticed before. The use
of words may help us clarify our observations. Assigning a
"filename" enables me to collect what I know about xxx somewhere in
my brain where I can find it again & compare it to similar examples. Language is a tool which we can use to refine & clarify our
thoughts. Language can also limit thought, however, and I think
some concepts may be better expressed in one language than in
another.
Anyway, I understand why you're careful about the
vocabulary you use with folks who are beginning to come to terms
with a physical handicap of some sort. I could spit nails WRT those
who spout whatever "political correctness" decrees without changing
their thinking one iota... or who firmly believe that certain
medical conditions are limited to senior citizens, nasty evil
smokers, etc. etc. despite evidence to the contrary. Bottom line
is, we've been there. And those of us who have been there tend to
choose our words differently. ;-)
Indeed, musicians do have an advantage there <g>.
Uh-huh. Although my learning mode is primarily visual,
I'm grateful that the study of music has taught me to use my ears
more efficiently.... :-)
I've told more than one person that if the miraculous
were to occur tomorrow and I'd find myself with full
20/20 vision I probably would be so confused and
disoriented I couldn't cope for quite a time, as my
brain wouldn't know what to do with the input it was
now receiving.
Although they may have 20/20 vision they don't seem
to notice what's going on around them in many cases. I must warn
you that if the miraculous suddenly occurred you might find yourself wishing it hadn't. These people evidently have difficulty sorting
out what matters from what doesn't in the big city, where the pace & quantity of visual input can be overwhelming at times even for those
who have had decades of experience with it... [wry grin].
I'm reminded here of a fellow Dallas & I met during our CB
days. We knew he was blind before we invited him to visit our
place. He coped so well, however, that by the time he enquired
where the bathroom was I answered as I'd have answered a sighted
person. We both had a good laugh when I realized just after I'd
told him where to find the light switch that it was irrelevant. :-)
Adding sensory input could potentially be as debilitating
as taking it away.
I imagine so. Visual input interferes with the alpha
rhythms in the brain, as I learned from reading the report on some
study or other while I was trapped in a hospital waiting room. More
about alpha rhythms on request. :-)
instructor doing. You're supposed to copy the hand signals in reverse....