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10/31/01
With two boys at home and the shortage of pharmacists necessitating
overtime it's been hard to find time to update the website lately.
Zach recently had his I.E.P. (Individual Education Plan) with
his school and the the teachers and therapists there. He also
has continued to see his speech therapist, Mindy, at St. Luke's
rehab here in Spokane. The consensus seems to be that Zach has
DVD (Developmental Verbal Dyspraxia) also known as Speech
Apraxia -- difficulty in coordinating the muscles used in speech.
Zach continues his therapy and school and one of our goals
is for him to have a 50 sign sign language vocabulary by the
end of the year.
Here's some information I was able to find about it on the
internet. See related sites for links
to the individual web sites.
Developmental Verbal Dyspraxia: General Information for
Parents (David Hammer)
Developmental verbal dyspraxia (DVD), also known as developmental
apraxia of speech and as oral motor planning disorder, is a disorder
that is more easily defined by what it is not.
It is not a muscle disorder and it is not a cognitive disorder
The problem occurs when the brain tries to tell the muscles what
to do -- somehow that message gets scrambled. It's like trying
to watch cable TV stations without the right descrambler. There
is nothing wrong with the TV station, and nothing wrong with
your set. It's just that your set can't read the signal that
the station is sending out. The child's language-learning task
is to figure out how to somehow unscramble the mixed message
her/his brain is sending to her/his muscles.
The visible results (symptoms) of DVD are:
little or no babbling in infancy; few consonants, understanding
of language much better than production of language, slow, effortful,
or halting speech; sometimes seems to struggle very hard to understand
and may make slow progress in therapy.
DVD has MUCH more effect on volitional (voluntary, creative)
speech than on automatic speech. This means that THE MORE YOUR
CHILD WANTS TO COMMUNICATE A PARTICULAR MESSAGE, THE HARDER IT
WILL BE! So, if you happen to hear her/him say something once
when there is no pressure, and you say, "Say it again!",
you are guaranteeing that she/he won't be able to. IT IS VITAL
TO PUT A MINIMUM OF COMMUNICATION PRESSURE ON THE CHILD.
NOTE: Your child's speech-language pathologist will need to put
communication pressure on the child. Low-pressure verbal activities
are the most important thing a parent can do to help. These include:
songs -- especially repetitive songs, like Old MacDonald
and finger-plays
poems
verbal routines (pat-a-cake, Willowby Walloby Woo, etc.)
repetitive books
daily routines (prayers, social greetings, salute to the flat,
etc.)
You can make other activities into verbal routines; make up little
sayings or poems that you say every time you do the same thing,
label instead of counting objects in counting books ("Three
dogs: dog, dog, dog"), verbalize repetitive activities (e.g.,
setting the table: "Plate, plate, plage, plage; fork, fork,
fork, fork."), and so on.
Don't make a big fuss about whether or not your child is talking
or singing along; just provide a supportive environment for her/him
to do so: Don't EVER say "You can't have it unless you say
it first" -- that's sheer torture for a child with DVD.
If your child is unable to communicate effectively right
now, the use of a sign language or a communication board to SUPPLEMENT
speech temporarily not only decreases the frustration but also
even seems to HELP WITH SPEECH DEVELOPMENT. Don't be afraid to
try it!
Dyspraxia may affect other motor functions (e.g. fine motor
control, gross motor planning), AND other language functions
(e.g. learning grammatical function words like "the,"
"is," "or," etc; learning more complex grammatical
forms like passive; spelling; putting words together into a sentence
or sentences together into a paragraph, etc.).
Occupational therapy, physical therapy, and learning disabilities
assistance are often helpful for children who have these difficulties.
DVD can be a very frustrating disorder at times. It is common
for children to make progress in "fits and starts"
-- good progress for a little while, then none, then more, etc.
Don't get discouraged! The therapy IS helping, even if you don't
see the effects immediately.
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Developmental Verbal Dyspraxia -- by Megan M. Guenther,
MA, CCC-SLP
Developmental verbal dyspraxia, also known as childhood apraxia,
is a serious communication disorder in which a child's ability
to carry out voluntary speech movements (pharynx, palate, tongue,
lips) are impaired in the absence of any paralysis. In addition,
children with DVD have difficulty with expressive syntax (grammar).
Children with DVD are unable to sequence speech and speech movements.
Their problem is in articulation, syntax (grammar) and phonology
and doesn't hinder other mouth functions such as eating. Their
problem is extremely resistant to traditional treatment. Children
with DVD understand much more than they can express. They may
also show subtle neurological problems.
Children with DVD exhibit multiple speech sound production
errors, involving both consonants and vowels. They may be unable
to achieve the proper mouth position needed for an individual
sound, or may be unable to maintain the proper position as the
sound is produced.
Children with DVD are unable to sequence speech sounds.
They may omit sounds in sequences of 2 or 3 or more. They may
mix the order of sounds in a given sequence. They may distort
sounds in a given sequence.
Because of these sequencing and memory weaknesses, errors
increase as word length increases and single words are clearer
than conversation. Errors vary with the complexity of the speech
sounds involved. Errors are inconsistent.
Children with DVD are not necessarily mentally retarded,
although performance on formal verbal testing may reflect "retardation"
in speech and language. Children with DVD are not typically deaf
nor even moderately hearing impaired. Their inability to produce
speech sounds results from coordination problems, not hearing
or listening problems. Children with DVD are not typically emotionally
disturbed, although behavioral outbursts are common reactions
to the frustration the child feels being unable to effectively
communicate.
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11/18/01
I haven't added much information to the web site lately. With
two kids at home suddenly getting time on the computer only seems
to happen if I'm doing Zach's spelling CD rom with him. Here's
a summary of what's been going on.
Last week we had another scare when we went to see Dr. Garabedian.
The radiologist's letter said that he saw new infiltrates which
could mean rejection. Dr. G hustled us right over for another
X-ray that they decided was o.k. but it was a reminder that even
though things have been going well there is always the likelihood
of chronic rejection out there. We do our best to not think about
it but it's always there.
Zach continues to experiment with vocalization but the progress
is slow. At speech therapy with Mindy at St. Lukes he has been
working on the vowel sounds and can do most of them. Last week
he said "pop" but as is often the case with apraxia
it was a one time thing that he hasn't been able to repeat.
We continue to work on discipline with Zach but it's hard.
After what he's been through it make sense that he would be a
little spoiled. We often don't know if a tantrum is due to him
just being a kid, or being frustrated with speech or with there
being some issue medically. I was very proud of Zach at his Uncle
Jeff's wedding this weekend. Although his behavior was terrible
during rehearsal and during pictures he managed to make it all
the way to the front of the church with his ring bearer pillow.
This was Zach's third wedding as a ring bearer and the first
time he made it to the front on his own. What a ham!
12/18/01
All is well with Zach. He spent the last weekend in the hospital
getting I.V. fluids and antibiotics to treat pneumonia. Zach's
little brother Cole is still pretty sick but we don't worry about
him so much since he's not immunosuppressed. We do however worry
about him giving something to Zach so we try to get Cole treated
a.s.a.p. whenever he's sick too.
Zach's Dynavox speech board came today so we're excited to
start learning how to use it at next weeks therapy session.
12/24/01
Zach's really had a rough couple of weeks. Whenever he gets the
flu or some virus it really knocks him for a loop, I guess it's
the immunosuppression. Zach hardly had eaten anything for two
weeks including his hospital time. As usual, right about the
time we really started worrying that something must be wrong
he comes out of it and was his old self. A couple days ago Zach
signed that he wanted waffles to Gina at 5 in the morning. That's
when we knew everything was going to be o.k. I'm not sure we'll
every get used to it when Zach gets sick....or that we'll ever
give Cole the sympathy he deserves when he gets sick!
12/25/01
What a great morning. That little grin Zach got when he saw is
train set is one of those things in life that's indescribable
in spite of the fact that you'll remember every detail of it
for the rest of your life. We tried to tell Zach "look what
Santa brought" but I think he already knows who helps Santa.
He signed thank you to both Gina and I even though we said Santa
brought it. Zach played trains all day. Sometimes he even let
his Grandpa Larry and I play. Cole's not ready to open his presents
yet but his big brother was more than glad to help with Cole's
gifts too!
1/14/01
We has a great family vacation in San Diego. It was our first
non-medical flight anywhere since Zach's transplant so we were
pretty excited and so was Zach. We have a link on Zach's Dyavox
called Zach's Vacation and he about wore it out pushing the different
buttons on the screen for the things we did such a go to the
zoo, ride the trolley,
go on a boat ride,
go to the beach,
an amusement
park, saw the seals,
our hotel is on Coronado
Island, etc. Thanks to our across the hall neighbor Kate
who watched the boys on night, Zach's Mom and Dad even got to
go out to dinner one night at the historic Hotel
Del Coronado which we were right across the street from.
It was a great vacation but we're glad to be back and Zach's
excited to go back to school today.
3/1/02
We just got back from taking the boys to the State "B:boys
basketball tournament, a yearly ritual in our family. Zach really
likes the games and claps for both any team whose crowd claps.
Since the last update Zach has made tremendous progress with
speech. In spite of some past opinions that he may never speak
he can say almost anything now and is constantly repeating things.
He still has a long way to go but we're very happy with the progress
he's making. Most words he drops leading consonants, Pizza becomes
izza and Castle becomes astle etc. We are especially appreciative
of Mindy Thompson, Zach's speech therapist at St. Lukes. Her
efforts with Zach have been a HUGE part of Zach's success and
Zach will definitely miss her while she goes on medical leave
until April. One sure way to get Zach out of bed the last few
months has been to tell him we get to go see Mindy today.
Zach enjoyed his 5th birthday last month. No small milestone
since sometimes when things were going badly we'd say "some
day we'll be celebrating Zach's fifth birthday and all this will
be a distant memory". Zach had a great party at wonderland
with lots of friends and family. He also was able to blow out
his candle for the first time ever. We've been working on blowing
for Zach's speech therapy.
Now that we are making progress with speech, (and reading
and counting and everything that goes with being able to communicate)
we are even more hopeful that Zach will be able to be involved
in anything he wants as he gets older. We are continually inspired
by more and more transplant success stories.
Chris Ledoux - Rodeo
champion, song legend and liver recipient.
Chris
Klug - Liver recipient and Olympic snowboard medalist.
Erik
Compton - Received a heart at 12 years old and is currently
a golfer on the PGA tour.
4/2/02
We just got back tonight from Yakima where we visited relatives
and Mike worked at one of the shorthanded pharmacies. Zach had
a great time interacting with all his cousins and we are so proud
of how well his speach is progressing. The last couple of months
he has made great progress and we are hopefull that he will continue
catching up.
Zach's last visit to Dr. Garabedian was uneventful but they
are somewhat concerned that the narrowing in Zach's aorta may
be returning. At two weeks of age they surgically enlarged it
but it doesn't seem to be growing as fast as it should to keep
up with the rest of him. Dr. Garabedian assured me that he shoudn't
need surgery to repair it and they can enlarge the area with
a balloon catheter. We hope that this won't become and issue
but we do plan to ask more questions both with Dr. Garabedian
and during our next visit down to Stanford.
6/14/02
Zach's school year has ended on a high note, his speech continues
to improve and he's gaining ground all the time. He's adventures
in expanding his vocabulary constantly amuse and entertain us.
Our last echo was great but we do worry about the persistent
cough Zach's had the last few weeks.
Zach caught his first fish last weekend with his cousin Kaige.
We took a picture so we'll try to get that added soon.
Please keep 8 year old Kylee Robertsen in your prayers while
she waits to be listed for a heart transplant. She has Lincoln
County ancestry in common with Zach and hopefully she will soon
also have a successful transplant in common too.
7/1/02
Zach and Cole had a great trip to see Thomas the Tank Engine
in Emmett Idaho last weekend. Trains are pretty much the center
of Zach's life right now. He's always liked Thomas videos and
used to watch them a lot when he was sick. When we came around
the corner and saw the life sized Thomas train Zach was VERY
excited and Gina and hi couldn't help but get a little misty
eyed thinking what we've been through to get there. We didn't
get much time to be sentimental though because as soon as the
bus from the parking area stopped Zach was off like a shot seeing
all the displays, a life sized Sir Topham Hat and of course riding
the train.
8/9/02
Why? Sometimes life is really hard to understand. Zach has had
a fine week but we know of two kids who weren't as fortunate.
One five year old to a car accident and eight year old Kylee
Robertson lost her transplant battle. Zach's journey continues
as such an unlikely transplant survivor but as others leave us,
we're reminded again how fleeting life is. Even as only an aquantaince
I'm struck with grief whenever I think of either child and their
parents. I try to remind myself of how foolish it is for me to
pity or mourn too long ... life in this world is short and surely
we are all not far behind...but still I struggle with why fate
can be so cruel as to take any child before their time...why?.
8/17/02
Zach continues to improve his reading skills. Yesterday he read
pull on a handle so he pulled it. He managed to almost completely
empty out the Holiday Inn Express in Yakima before they got the
fire alarm turned off. Oh well...it did say pull! |