GB358: schurr schurr@bigpond.com, from: sth australia, on 29 Aug 2003 at 00:23
Hi there,
We are still going around and around teaching
Jason to drive, there is a sports area close to home,and its pretty deserted,
being winter.
There is a lawn bowls and a football oval and a swimming centre
all with car parks too, that I get him to go around. It is quite convenient but
I dont know how he would go in traffic. He wouldnt panic, but I may! I am a very
calm person though!
Take care,
nice to read your messages, keep them
coming
Sandy and Jason
I miss going on this web site and finding messages from
people I know or replies from others. I guess everyone is busy getting their
child in school. It seems about that time. Well, my two week summer has cease,
and alas, the new year begins. It seems to be going great. I have teachers who
are quite passionate about the subjects they teach and do a fine job of
presenting the material to be learned through lectures, power point and what
not. I am quite pleased with that.
God bless you all-----Katherine :0
For God so loved the world; that he gave his only begotten son,that whosoever beiieveth in him should not perish, but haveeverlasting life.--To the people who use this website for helping each other I could not think of anything better to add than what I had just read on this website.Inot feel we can move on to helping each other as we were.What do you think?
Just for this morning, I am going to step over the laundry,and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink,and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't
stand over you trying to fix them.
Just for this afternoon, I will take us
to McDonald's and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my
favorite TV shows.
Just for this evening when I run my finger through your
hair as you pray, I will simply be grate! ful that God has given me the greatest
gift ever given.
I will think about the mothers And fathers who are searching for their
missing children, the mothers and fathers who are visiting their children's
graves instead of their bedrooms, and mothers and
fathers who are in
hospital rooms watching their children suffer senselessly, and screaming inside
that they can't handle it anymore.
And when I kiss you good night I will hold you a little tighter, a
little
longer. It is then, that I will thank God for you, and ask
him for nothing,
except one more day.............
The Cost of Raising a Child
We don't always think of these things....
The government recently
calculated the cost of raising a child from birth to 18 and came up with
$160,140.00 for a middle income family. Talk about sticker shock!
But
$160,140 isn't so bad if you break it down. It translates into $8,896 a year,
$741.38 a month, or $171.08 a week. That's a mere $24.24 a day!
Just over a
dollar an hour.
Still, you might think the best financial advice says don't
have children if you want to be "rich." It is just the opposite.
What do
your get for your $160,140?
Naming rights - First, middle, and last!
Glimpses of God everyday.
Giggles under the covers every night.More love
than your heart can hold. Butterfly kisses and Velcro hugs. Endless wonder over
rocks, ants, clouds, and warm cookies. A hand to hold, usually covered with jam.
A partner for blowing bubbles, flying kites, building sand castles, and skipping
down the sidewalk in the pouring rain.
Someone to laugh yourself silly with
no matter what the boss said or how your stocks performed that day.
For
$160,140, you never have to grow up. You get to fingerpaint, carve pumpkins,
play hide-and-seek, catch lightning bugs, and never stop believing in Santa
Claus.
You have an excuse to keep reading the Adventures of Piglet and Pooh,
watching Saturday morning cartoons, going to DisneyLand, and wishing on
stars.
You get to frame rainbows, hearts, and flowers under refrigerator
magnets and collect spray painted noodle wreaths for Christmas, hand prints set
in clay for Mother's Day, and cards with backward letters for Father's Day.
For $160,140, there is no greater bang for your buck.
You get to be a
hero just for retrieving a Frisbee off the garage roof, taking the training
wheels off the bike, removing a splinter, filling a wading pool, coaxing a wad
of gum out of hair, and coaching a football team that never wins but always gets
treated to ice cream regardless.
You get a front row seat to history to
witness the first step, first
word, first bra, first date, and first time
behind the wheel You get to be immortal.
You get another branch added to
your family tree, and if you're lucky, a long list of limbs in your obituary
called grandchildren.
You get an education in psychology, nursing, criminal
justice,
communications, and human sexuality that no college can match.
In the eyes of a child, you rank right up there with God.
You have all
the power to heal a bruise, scare away the monsters under the bed, patch a
broken heart, police a slumber party, ground them forever, and love them without
limits, so one day they will, like you, love without counting the cost.
ENJOY YOUR KIDS AND GRAND KIDS!!!!!!!
THEY ARE ALL A SPECIAL GIFT EVERY
ONE !!!!!!!!!!!!!!!
I wanted to share this with you
RE:ANNE S. from Canada --You are not alone.We experience the same problem.My daugther--her eyes did straighten up.My son --his eyes have not been as fortunate.However he does have 20/30 vision.Potty training--we were like you.Patience is about we could do.Try rewarding--try putting cereal in the potty and let him aim at the cereaL --such as fruit loops--apple jacks--. AT the age of 9--I still have to put a -goodnites on him at bedtime-I have tried several things-cutting back on liquids at nite- I have tried getting up in the middle of the nite and taking him to the potty and that seems to work better than anything else I tried.The shying away you talked about--We did the same thing--It will get better--He is just shying --A lot of kids who do not have oma does the same thing--Do not worry -It got better for us and I feel it will for you too.OT - PT -SP and Aquatic and Hippo therapy worked well for us also.Feel free to contact me at ambas@dixieconnect.com
My son was born with OMA and Cogans Syndrome.He is 9 years old. His eyes have started Dialating at times on their own.Is anyone else having this problem?His eyes did this for a few days in last December .His DR. said it was because I had gave him Ibpropen.I felt at the time he was wrong because my son had taken Ibpropen many times before.Now his eyes has began to do this again and I have not gave him Ibpropen.Ifeel that this is connected with his OMA and COGANS SYNDROME.If anyone out there is experienceing this same problem Iwould appreciate feedback.Thank You---ambas
Hey Natalie. Whats up? I didn't know you were 17. I think I
might have seen one of your messages before and just thought you were one of the
many parents that visit this site. I love to just pick your brain and understand
some of the difficulties you might have had going through school, and even
present day high school.
> Katherine <
Hi Sandy
Just to know that there are other young people
out there the same as me
really keeps my spirits up. I just want to be the
same as my peers and be happy. If
I dot drive well fine I am 17 years old
and have years ahead. I look at
Katherine's mails and think wow she has
achieved so much as has Jason you must be
so proud, I know my Mum is of
me.
With best wishes to you and Jason, If only we could all meet up what a
chat
we could have. I only have younger people here to talk to with MA I do
wonder
what the future holds.
Bye for now,
Natal.
Sandy,
You are too sweet! May God bless you and Jason in
so many ways.
>Katherine<
Dear Natalie,
At night Jason says the street lights have
longer streaks of light coming from them but I have heard about glasses to stop
the glare from the street lights at night. You may not have that problem anyway.
I havent taken him out for night driving but eventually I will. Near the
swimming centre, because its winter, the carpark is quite large, but between
carparks there is a concrete stobie pole I dont know why they have one there.
They have removed a lot of the concrete poles on our roads because they dont
bend when hit. i guess there arent any around where you are, they are making
power under ground and light poles are alluminium because they bend when
hit.
Another thing Jason has is he needs dark glasses on through the day as
his eyes are sensitive to the sunlight.
Take care
Sandy and Jason
Hi Katherine,
Wow, B's well done you are going to do
exceptionally well in all the things you do because of your inner believing of
yourself.
I can understand your Mum worrying, thats what we are for! Jason
hops on the bus and he goes on planes, by himself and to get to work he goes on
the bus to the city and goes on another bus to go to the other side of the city.
Ive got used to it now and he sms me on his mobile phone, and if he takes
longer, I ring him and say where are you? When my girls went on camp, I use to
worry about them because they where the ones more likely to get hurt. Jason went
on a 4 day camp that he insisted to be able to go on. I had to speak to the
teacher and said he would probably wish he hadnt asked to be on the 4 day one,
whilst he was on it, but he so desperately wanted to go. He went, he did get a
scraped knee. The teacher was happy that he went and that he did do well. But
the girls seem to get hurt, Michelle broke her arm a few years ago leaning to
far back on a chair
Take extra care and dont take any chances, and its best
to get off and walk if your not sure. Or take a bit at a time, because you are
and always will be precious to your Mum!!!!!
Say hello to your Mum and I hope
she feels more at ease. We get grey hair too quick!!!!!!!!!!
I dont think
Jason would of been ready to drive a few years ago, we have not been out because
we have been out socialising, with some birthdays.
ttyl,
Take great
care,
I will be thinking of you, always, you have touched my heart and my
thoughts are with you.
Sth Australia is having the end of the winter and
soon it will be spring, the lowest temperature is probably 5 but we never feel
it, thats when we are cosy in our beds.
love Sandy and Jason
Sandy,
Actually, I just started riding on the main roads a
couple weeks ago. (And not because I never could, or it took me alot of courage,
just because I never thought about getting around on my bike. Plus, I have lost
about 6% of my body fat doing so!) I have to admit, the roads with heavy traffic
kind of freak me out. Right now I have just rid'n to my church and back. It
might take me 15 minutes, but there are only a few main roads I have to take;
all the rest are back roads. Tomorrow, since I have alot of time and don't have
to work, I am going to attempt riding my bike down 77 to get to 23rd, both of
which are major highways. But I just told my mom, who is worried about her
little baby biking all over town, that I have to push myself to learn these
things bc I will not be able to depend on someone to take me somewhere all my
life. I think I have devised a good plan of action. So, wish me luck. I will
also go early in the morning, so there is less traffic. That way, when there is
alot of traffic in the evenings when I have to go to work, I will be more used
to it. I am glad that jason is coming along well with the driving. I am happy
that he will get to do this. For me, practice wouldn't have made it better; my
eye muscles just weren't strong enough and the connection between them and my
brain wasn't as fast as everyone else's to drive. But I am glad that is not the
case for jason. You'll be happy to know I passed both my classes with B's! I
have about 16 days of summer left and I just don't know what to do with myself.
I'll talk to you all later. Take care and God bless~ Katherine <
Dear Katherine
Hope all the tests went well and you can
get a bit of a break from studying I hope you do keep going and get your Masters
as well. You have already achieved a great deal!
Well I am also amazed that
you ride a bike in todays traffic, I would think it a lot safer with metal all
around. I guess it took a long time to get to ride on the road?
We are still
trying to get Jason to ride along straight lines in the car park they have the
parking bays so we can line up to those and go the full length then reverse back
to where we started. Going onto the very deserted road, is different as he goes
to near the gutter and sometimes to close to the middle of the road, but where
we are that road is very curvy and a blind corner as well. He is getting better
though. We are only going at the most 20 km a hr. We are using a station wagon
as well.
Take care
Sandy and Jason
To the best of my knowledge, that type of behavior has nothing to do with OMA at all. Some kids are just socially like that, but the potty traning thing, well, don't ask me why its taking him so long. Maybe it is just because some kids are like that too. I don't know, but its just a thing, nothing to worry about.
My son is 4 years old, and was diagnosed with OMA when he was 6 mths. His recent visit to the opthamologist indicated that his eyes seemed to be correcting, and were moving well together, causing little head thrusting (he has worn glases since he was about 1.5). He has some gross motor delay, and some speech delay, but seems to be improving as he grows - with a little vhelp from OT and SP.
The two things I am wondering are:
1. potty training. We are having difficulty with potty training. Whle he sits on the potty regularly, he only goes in it rarely. What are others experiences with this? It is summer here, and he is wearing only underwear - to help his awareness of the "pant wetting" sensation, but he only advises us of his needs milli senconds before he goes. Does anyone has any experience, or unusual tips that helped in this area?
2. Quite frequently, he shys away from people, when first greeting them, even if he knows them quite well. By shys way, I mean - refuses to talk to them, saying NO looking / moving away etc. AFter 3-5 miutes he seems to warm up and is their best friend. Has anyone else experienced this kind of behavour? His OT thinks it is because he is unsure how to react at first. It took about 4 sessions with the Ot and speech therapist for him to warm up and become effectively interactive.
Other than these things, he seems to be coming along great.
Does anyone have any comments / suggestions?
Hi Cindy,
The next step of you inflating and deflating
is:
Dan stands, whilst you hold both his hips and press down while he keeps
inflating and deflating stuff!!!! I had to do that to Jason while he walked with
a cart with his four bricks, He is now built like a mack truck, funny how he
started out as a floppy kind of rag doll!!!
The driving lessons are going
okay even getting him to drive around concrete stobie poles, Oh im
soooooooooooooo mean!! Quite safe too, amazing really. Im not ready for the road
yet for a long time.
Take care, you do have to have a sense of humour and
they do benefit from it greatly, I dont think I would even try if we lived in
Sydney!
Sandy and Jason
I am currently studying Anatomy and Physiology. One of my
many course I have to take to get my AS in nutrition. Afterwards, I will attend
FSU in tallahassee to get my bachlors. Hopefully after that I will have enough
will power to go on to get my masters a UWF in Pensacola. I have a huge test
tomorrow that I have not yet had the change to study for and a gigantic final
this thursday in lecture and lab. I still have to work 4 hrs a night too. So,
really, I should get started asap. Ttyl.....Katherine
P.S. My eyes couldn't
shift back in forth fast enough to drive. And my eyes so frequently go in and
out of focus. Right now I ride a bike to where I have to be, and even that is
difficult when traffic gets heavy.
Dear Katherine,
As an OMAer you can understand how
difficult it is to manage day to day things as a toddler child adolescent and an
adult, constantly having to acheive things that everyone else does, and takes
for granted that it is easy. That makes me think with driving it is another
thing that would have to be done over and over again until it became natural,
but ofcourse if you are scared and feel it be best not to do it, thats okay too!
I think you were fantastic what you did achieve it should of been hair-raising!
Jason's father took him out for a test yesterday to a vacant shopping centre.
Adelaide isnt as big as other places. We were in Florida about 10 years ago we
took the kids to Disneyland and Disneyworld to the Epcot Centre to San
Franscisco and to L.A. and drove 3000 miles around in a Ford Taurus a beautiful
small car but had room for 2 adults 3 kids in the rear seat and 2 in the baggage
area, the kids loved to go right in the back. We thought how ideal that car was
for Australia.
I would never of got Jason to ride a bike, he would never of
got the balance but others can ride a bike. Apraxia means (lack of coordination)
the brain sending the message back to whatever part you want to move, or speak
or see.
You are one remarkable girl, I admire you greatly, what are you
studying?
Take care
Sandy and Jason
Please help!!! Our daughter Sabrina was diagnosed with OMA at 14 months of age. She is now going to be 9 in a couple of weeks and the school board and us are starting to have second guesses about her diagnoses. Sabrina never really head thrusts she just looks through the side of her eyes to look at things. It doesn't constantly happen but more often when looking at things from a distance. She was born with hip dysplasia, wore a brace for 6 months. At 6 weeks began to have poor sucking and did not grow. At 3 months was admitted into hospital and was seen by a nueroligist. The nueroligist had no answers other then she had poor muscle tone was very floppy and that he would keep on seeing her at his office. The doctors also said that she had failure to thrive. She has been delayed in all aspects and has seen OT,PT and speech throughtout. From what I know of OMA that her symptoms should be slowly going away. That is not happening here. She is really struggling. I know from this little information that you may not have an answer but does she sound OMA.From parents who are really trying to find some answers can someone pleas help. Thanx THE AMBROGIANOS
Sandy,
I was just wondering then, what is jason's problem?
Apraxia, to the best of my knowledge, just means difficulty. So, I do suppose
there are many ways one could have difficulty with his/her ocular motor nerve. I
just wish that there were specific names. Maybe there is and I don't know.
About the whole ceiling thing, well, I had to do tracking things like that
all the time with my occupational therapist when I was little. (Until middle
school I think). Anyhow, I must attend my studies. TTYL........Katherine
Hi Katherine,
When Jason looks ahead he can see, each side
as well as partly behind as the eyes turn further than my eyes do, he can see
further back than I can. My father use to tell me his father could look behind
and see if anyone was coming up behind him. If you say that to a Dr they dont
understand!
Jason has been playing computer games since he was 5, his head
jerk, stopped around the age of 10 I think!
There must be many ranges in the
OMAers, on everything. Jasons eyes still do there little movements on there own
one at a time. If you were to lay on your bed and look at the ceiling each
corner one at a time, without moving your head, but just your eyes, it may help
with your vision.
The reason for trying to drive in isolated places is
because he is not ready to be on the open road, I think it has a lot to do with
patterning of the brain you keep doing the same thing over and over until it
because automatic. oviously in a safe environment. Your mom must of thought you
were quite capable to drive, I look at Jason and say you cant go on the open
road with traffic. He may never be ready but I have to give him that chance.
Take care
Sandy and Jason
Sandy,
Well I wish you both the best of luck with this
driving thing. I didn't find out that I couldn't drive until after I got my
permit and learned how scared to death I was just to drive to a nearby wal-mart.
That is when my mom took me to an eye center in Pensacola. It is there that I
was told that I had bad reaction/glare recovery time, depth perception, and
trouble with focusing. See, for me, it takes a little longer for my eyes to tell
my brain what they saw. So, it was difficult to me to constantly shift my head
from the speedometer, to the windsheld, to the reer view mirror, to the sides to
look for on-coming traffic, etc as fast as one needs to drive efficently. And I
have heard, on this website, on people with OMA driving, so I have learned it is
possible. I don't understand how different people are that have OMA, but I have
found out that they aren't all the same. Good luck. I am happy to answer any
questions I can. Katherine
We haven't posted any lately ~ OK here's one of our latest
&
greatest. My son Dan, 5.5 yrs, has truncal hypotonia (which often
accompanies COMA) meaning weak muscles in his trunk. A great
strencthening excercise is pumping up inflatable toys/pools/air
mattresses etc. I got him one of thoses pumps that are a cylinder
about
6 in wide, 12 in tall & pumps air when you press down on handle
&
when you pull up. It provides great resistance for upper chest &
arm
excercies, plus he LOVES it. So we spend lots of time pumping &
deflating stuff (fun, eh...). He sits in a little chair & puts his
feet on the bottom of pump & pumps away. Too cute ~~~~any one else
have one this week ??? Cindy
Just curious if anyone else is experiencing a similar situation. I have noticed that if I lie my son (3yrs old) on his back and hold his head straight in place, he can move his eyes to his right. The left side is impossible for him no mater how hard he tries. He was originally diagnosed with vertical and horizontal ocular motor apraxia at 6 months but the vertical disappeared by 18 months. Interesting enough his muscle weakness is also on his left side.
It was my understanding that the horizontal apraxia is not isolated to a particular side. Has anyone noticed anything similar?
Other than this oddity he is doing so wonderful I can not believe the difference. He started walking solo at 28 months and now at almost 37 months he is starting to jump off the ground, he runs, walks on roller skates ( with out holding my hand), climbs and has a vocabulary that rivals a 5 year old. He is starting preschool next month and he can't wait to ride the bus.
I never thought it possible but other than the obvious muscle weakness ( he has a slight limp) and his tongue ,he looks and acts like all the other kids his age.
Thanks in advance for any input.
Jillian
I sure hope all the best luck to Jason learning....like I
posted before, one
of my pals has mild Downs Syndr & it took her until 24
or so to learn to
ride a bike & to 30+ to drive a car (she was bound
& determined she was
going to learn & flunked the test so many
times...finally suceeded tho'-did
not give up- I think it took 5 yrs to get
licence) We took her to the beach
& made her drive around stumps &
driftwood obstacles we'd set up...in
recollection quite humorous, but NOT at
the time. Since Dan was 3.5 yrs
(now 5.5 yrs) I have let him steer the truck
all over the beach (starting
early). I really hope he'll be able to drive one
day even if I have to move
to the Indian Reservation & get him a big 3/4
ton with an iron bumper (hee
hee)...ok just kidding ~ Cindy
DEAR SANDY AND JASON,
THAT IS SUPER ABOUT JASON PASSING
HIS DRIVING TEST. I AM SURE HE WILL DO JUST
FINE!!! THAT IS A HUGE STEP
FORWARD AND CONFIDENCE BUILDER. CHRIS IS A VERY
CAUTIOUS DRIVER , ALTHOUGH A
LITTLE ABSENT MINDED AT TIMES. HE TENDS TO GO BY
TURN-OFFS BEFORE REALIZING
HE WAS MEANT TO TURN , SO WE HAVE DONE CONSIDERABLE
BACK TRACKING IN LARGE
CITIES LIKE CALGARY. CHRIS WILL BE 30 NEXT FRIDAY. IS
HARD FOR ME TO
BELIEVE. WEATHER IN VICTORIA HAS BEEN VERY HOT AND DRY. WE
BADLY NEED RAIN.
THIS IS THE SECOND SUMMER IN A ROW THAT SOUTHERN B.C. HAS BEEN
IN A DROUGHT.
I AM STILL STRUGGLING WITH VISION PROBLEMS . READING AND
COMPUTER WORK IS
QUITE DIFFICULT AND TIRING. GOOD TO HEAR FROM YOU AS ALWAYS.
hi Katherine'
Thanks for your very valuable imput! Acuity
depth perception etc are very valuable comments.
Jason did have a medical a
year or so ago, and his eye specialist said with his eye sight he could fly a
plane. As pilots with as much sight pass the test.
I am not going to take
Jason out on the road, straight away, and it may take a long time to achieve,
but I do know there are OMAers that certainly do drive cars, even the eldest
known case on this message board, Dan Meyer writes he drove, and he lived in
Chicago! Jason has his licence and I can take him legally somewhere to try and
teach him with a lot of patience. If he cant manage it at least he
tried.
Chris from British Columbia drives and we do correspond.
A car is a
weapon, so what I am interested in teaching him first is to move off very
slowly. Also away from anything else. Maybe a school yard when no one is around
or a parking lot that has no one else around. I know it wont be easy. The beach
he could drive on is about 45 minutes away from here all the other beaches you
would get bogged in. I wish I had a dual brake, on both sides of the car like a
real teacher! I'd feel safer that way, but I can only try to help.
Take
care
Sandy and Jason
One more thing. I forgot to say that, if he has OMA, you should take Jason to an eye center of some sort where they can test his accuity, depth perception, reaction time, etc. But if he will indeed be able to drive, yeah for him! I would be interested in knowing his condition and how that is possible.
Not to burst your bubble or anything, because maybe jason will be able to drive, but I passed my learner's test too. That doesn't mean I got to drive in the end.
Yay for Jason !!!!!!!!! Take him to the beach or a BIG
parking lot &
practice. We have beaches here that are HUGE & we can
drive on them ~
great place to learn s there is basically nothing to hit
unless you drive
into the lake (hee hee) also our local college has enormous
lots. Please
post how he does & remind him that even neuro typical folks
sometimes flunk
the test a few times (like me!!-if I can be called "typical"
hee hee again)
before they finally get their license.
-Best Luck !!!! ~Cindy (mom to Dan, 5.5 yrs, COMA, Hypotonia, dysarthria
Well, Jason went for his learners license today and passed
it, so he can now legally learn to drive, should be fun! Knowing everything is
harder to achieve but not impossible, I'll be doing a lot of teaching in an open
area!
Take care
Sandy and Jason
I just was wondering where Cindy went off to. I started to look forward to having email in my inbox each day. But now she is gone and sadness had taken over my soul. I'm kidding....maybe she went on vacation or something. Toodles!
Hi Jackie,
It is completly normal behaviour when you want
to get your message across but its so hard and frustrating. We do everything for
granted, the OMAer has to coordinate, everything, from the brain to the arms to
the legs to the eyes to the speech, and it is all an effort, until it
becomes
natural. (as a form of patterning of the brain)
Treat him as a
normal everyday son, (because he is) he just has difficulties yet that he hasnt
overcome but he will get better, but it takes time.
My son couldnt walk in
water but was taught to swim but eventually I think a year later, he could walk
in water.
Jason is a (web developer) He started on computers when he was 5,
and it was the best thing we ever gave him. Sign language was another great
thing as it opened up his world.
I think we are beginning to get more OMAer
adults around 17 plus that are adding to this web site and thats fantastic to
see. They will do some fantastic Jobs, they also are gifted with the sense of
helping others because they know how hard it is for them. Encourage them daily
and really get behind them to show them the way as you will be rewarded many
times by their achievements.
Teachers will start to tell you how wonderfully
they are doing but you will tell them exactly that for a long time, until they
themselves (the teachers) realise. He went into the mainstream school at 6 and
had a reader to read everynight and one to read for his own pleasure so he read
to little books everynight. Any child that gets to read two books a night is
going to improve.
Driving is not impossible but we havent got there yet, he
is going to a learning thing every week at the moment to see if he can. Other
OMAers certainly do drive it just takes them a little longer to achieve that
goal. I dont think anything is impossible for them if they set their mind on
something. Jason has a website www.jason.mustbehere.com
If you click on the
above web page and go to photos you will be able to look at him on Sydney
Harbour Bridge, with his aunt, also he went on the sea plane. He does travel to
Sydney and to Queensland (we are from Sth Australia. We write to Chris, He has
back packed in England and Scotland. It seems hard to imagine but your son will
be capable of that too! Make him independant as you are doing him a huge
favour.
He will make you proud too!
Take care, you can read many many many
bits and pieces I have written over the OMA website and I do visit it daily,
thats how I realised you meant me and my son in someone elses piece of
information.
Take care
Sandy and Jason
Not thinking I would find anything, I typed the words "ocular motor apraxia" in the google search engine. I always knew there were others with oma out there, but I had never met, talk to, or heard from someone else that had it. I will turn 20 next May. I don't drive, but I still work and attend college where I am know getting my AA in pre-nutrition to work at hospitals. Honestly, I don't know about severity of causes, but aside from many (not all mind you) teacher's lack of understanding and knowledge about oma keeping them from considering helping me (even with an IEP), I have been, and am, doing well. I would love to hear from anyone and everyone. I just want you all to know that there is someone out there that can tell all of you with young children going through the same thing I did and am, that those children will grow up and become lawyers and interior designers just like everyone else. The only thing is, they will have to struggle alot harder to get there. Please write. God Bless
email address for previous message
A TRUE STORY
by Mildred
Hondorf
------------------------------------------------------------------
At
the prodding of my friends, I am writing this story.
My name is Mildred Hondorf.
I am a former elementary school music teacher
from Des Moines, Iowa.
I've always supplemented my income by teaching piano
lessons-something
I've done for over 30 years.
Over these years I found that children have many levels of
musical
ability. I've never had the pleasure of having a protegee, though I
have
taught some talented students.
However I've also had my share of what I call "musically
challenged"
pupils.
One such student was Robby.
Robby was 11 years old
when his mother (a single Mom) dropped him off
for his first piano lesson.
I prefer that students (especially boys)! Begin at an earlier age, which
I
explained to Robby. But Robby said that it had always been his
mother's dream
to hear him play the piano. So I took him as a student.
Well, Robby began with his piano lessons and from the beginning I
thought
it was a hopeless endeavor. As much as Robby tried, he lacked
the sense of
tone and basic rhythm needed to excel. But he dutifully
reviewed his scales
and some elementary pieces that I require all my
students to learn. Over the
months he tried and tried while I listened
and cringed and tried to encourage
him.
At the end of each weekly lesson he would always say,
"My Mom's going to
hear me play someday."
But it seemed hopeless.
He just did not have any inborn ability.
I only
knew his mother from a distance - as she dropped Robby off or
waited in her
aged car to pick him up. She always waved and smiled but
never stopped in.
Then one day Robby stopped coming to our lessons.
I thought about calling him but assumed, because of his lack of
ability,
that he had decided to pursue something else. I also was glad that
he
stopped coming. He was a bad advertisement for my teaching!
Several weeks later I mailed to the student's homes a flyer on
the
upcoming recital. To my surprise Robby (who received a flyer) asked
me
if he could be in the recital. I told him that the recital was
for
current pupils and because he had dropped out he really did not
qualify.
He said that his Mom had been sick and unable to take him to
piano
lessons but he was still practicing..
"Miss Hondorf.. I've just got to play!" he insisted.
I don't know what led
me to allow him to play in the recital.
Maybe it was his persistence or maybe
it was something inside of me
saying that it would be all right.
The night for the recital came.
The high school gymnasium was packed with
parents, friends and
relatives.
I put Robby up last in the program before I was to come up and thank
all
the students and play a finishing piece. I thought that any damage
he
would do would come at the end of the program and I could always
salvage
his poor performance through my "curtain closer."
Well, the recital went off without a hitch.
The students had been
practicing and it showed.
Then Robby came up on stage.
His clothes were wrinkled and his hair looked
like he' run an eggbeater
through it.
"Why didn't he dress up like the
other students? " I thought.
"Why didn't his mother at least make him comb
his hair for this
special night?"
Robby pulled out the piano bench and he began.
I was surprised when he
announced that he had chosen Mozart's Concerto #
1 in C Major.
I was not prepared for what I heard next.
His fingers were light on the keys, they even danced nimbly on
the
ivories. He went from pianissimo to fortissimo.... from allegro
to
virtuoso. His suspended chords that Mozart demands were magnificent!
Never had I heard Mozart played so well by people his age.
After 6 1/2 minutes, he ended in a grand crescendo and everyone was
on
their feet in wild applause. Overcome and in tears I ran up on stage
and
put my arms around Robby in joy.
"I've never heard you play like that Robby!
How'd you do it?"
Through the microphone Robby explained:
"Well Miss Hondorf... remember I told you my Mom was sick?
Well, actually
she had cancer and passed away this morning.
And well.... she was born deaf, so tonight was the first
time she ever
heard me play.
I wanted to make it special."
There wasn't a dry eye in the house that evening.
As the people from Social Services led Robby from the stage to be
placed
into foster care, I noticed that even their eyes were red and puffy
and
I thought to myself how much richer my life had been for taking Robby
as
my pupil.
No, I've never had a protegee,
but that night I became a protegee...of
Robby's.
He was the teacher and I was the pupil.
For it is he that taught me the meaning of perseverance and love
and
believing in yourself and maybe even taking a chance in someone and
you
don't know why.
This is especially meaningful to me since after serving in Desert
Storm,
Robby was killed in the senseless bombing of the Alfred P.
Murrah
Federal Building in Oklahoma City in April of 1995,
where he was
reportedly...playing the piano!
And now, a footnote to the story.
If you are thinking about forwarding this message,
you are probably
thinking about which people on your address list aren't
the "appropriate"
ones to receive this type of message.
The person who sent this to you believes that we can ALL make
a
difference. We all have thousands of opportunities a day to help
realize
God's plan.
So many seemingly trivial interactions between 2 people present us with
a
choice:
Do we pass along a spark of the Divine?
Or do we pass up that
opportunity,
and leave the world a bit colder in the process?
Sincerely, Raven^
My son is 9 years old.He was born with OMA.After 2 years in kindergarten I began homeschooling.Ido this under a Dr.s care. We go to Speech;Phiscal;Occupational;Hippo and Aquatic Therapy.Ibelieve we have the best Therapy group anyone could ever get.I feel that is very imporant.Homeschooling was a big decison but it has already proven to be the best one for my child.MY son had delays in fine and gross motor skills.Also in visual skills;delayed in crawling;which by the way- he craweled backwards first. Delayed in walking ;speech -potty-trainging .You name it -we were delayed in it.We go to Dr.s in and out of state.Iam very grateful to have found the Dr. that helps me in schooling.Also grateful to the HSLDA for their help in all they do.We were told at 4 weeks old our son was blind.He not has 20-30 vision.He did not have surgey on his eyes for the Dr.said it would either over correct his vision or under correct his eyes because his eyes go to far to the sides.He does still have the head jerks but not as bad.The things We would think are difficult seems easy for him. The things we would think are easy are sometimes difficult for him. Their is no doubt he is one of the smartest little boy you could ever meet.This has been the best year for him.He is well-behaved. He gets along with others well.I have a 12 year old that had a slight case of OMA until the third grade. She now makes a and b in school.Ido not feel my son will out grow this with age as she did.Iwould like to ask others if you or your children experienced stomach aches.Also Iknow potty-training was a delay for us as well as for some of you.Is there anyone who still experience Bed -wetting at nite.Anyone have kidney or bladder problems.Ifeel like we are missing something.Ihave spoke with Dr.s about this but no one is as experience with OMA as we parents are. We are so blessed to have our children.They have a way of making everyone smile.They are very smart.Do not let anyone tell you your child is not.Who knows one of our children may be Presdient someday. I did not mean to take up so much room.I just got my computer and Iam still learing the keys.If I can be of any help to you -feel free to Email.There is so much for us to do. Never give up.--Ms.Shelton
Hi
Jason saw the Respiratory Specialist, yesterday for a
lung function test and his lungs work at 85% so he was given ventolin and his
lungs work at 100% so he now has a seretide medication for Asthma. I didnt hear
any coughing last night and I think I heard one cough this morning so after 16
months of coughing morning and night. Thats fantastic!
He may still have to
have an operation on his nasal area to see if they can get it to drain better,
but thats after the asthma is in more control and settled.
Take
care
SAndy and Jason
Subject: Re: piano or musical instrument lessons???
Hi Everyone,
Someone has already mentioned that the Suzuki method of
teaching music does
not begin with reading. We have been taking Suzuki violin
lessons for almost
a year now and it is WONDERFUL. It is especially designed
for young
children but great for any age. My son is almost 5 and will learn
to play
about 10 pieces before ever reading a single note of written music.
He does
not have OMA but his 2 1/2 yr old sister does. My experience this
year has
me absolutely convinced that this is something she is able to do.
She's with
me at the lesssons. (She even performed in our end of yr recital
by
"playing" her pretend violin while her brother played. She took a bow
to
much applause and I had to drag her away from the audience screaming
'no!no!
This is a child who shrinks from even friendly strangers)
You can
find Suzuki programs through many university music programs or on
the web. I
know that piano is also offered.
Jill
Probably one of those lampshades that have something go
around
the room when the main lights are off (so they can watch it circle the
room,and encourage them to watch it go around. Eye tracking is a wonderful
excercise for them.
Take care,
Dont be so hard on yourselves You are doing
Great! ONE DAY AT A TIME!
Hi Everyone,
Just wanted to ask any of the families whose child has learnt a musical instrument in particular the piano. I am sure there has been a discussion re this before and would love some input. Alex is 61/2yrs old and very keen to have a go at something. He is interested in the piano but thought might try something else first, but what, I don't know and that is where I was hoping that some input from you guys would be helpful. Please let me know what you think, what instrument your child has tried and how successful or not this was... love all input.. Thks .
Cindy - can't believe Dan is starting school wow the time has really gone by - best of luck sounds like you have good support at the school you have chosen and I hope all goes well.
Cheers
Dawn
: "Moore, Cindy"
Subject: RE: educational implications of
children with Ocular Motor Apraxia?
My son Dan will start Kindergarten at our local Elementary School in
Sept.
He has been assigned a full time SEA (Special Ed Assistant) who will
help
him out during the Kindergarten class. He will also get
Vision/Mobility
Therapy, PT & SLP from school board too. To what degree
yet I am not sure,
but we had a Team Meeting & I was pleased to see that
both the Principal &
his Kinder Teacher (who was also an SEA)were
confident Dan would be fine &
included. Wish us Luck, Cindy (Mom to Dan,
5 yrs, COMA, Hypotonia,
dypraxia, verbal/oral apraxia, dysarthria)
1
Date: Wed, 25 Jun 2003 10:57:26 EDT
From:
Jclarkeiii@aol.com
Subject: Re: educational implications of children with
Ocular Motor Apraxia?
My son Jack, age 7, was in an inclusion preschool - some special needs, some
typically developed kids. He was in a regular private kindergarten but did
have someone to help him with transitions throughout the day. In first grade
he was back in the public school in an inclusion classroom. Next year will
be
the same. The inclusion classes are good because there is an aid in the
classroom. The aid helps Jack focus and stay on track as his mind tends to
be
other places. He is on a plan at school and receives physical therapy but
no
longer sees the vision specialist. He is a little behind on his gross
motor but
his biggest problem is his behavior (getting much better though).
As far as his academics go, he has had absolutely no problems and is above
grade level in reading and math. A totally special ed class would be no good
for Jack, nor for any of the other OMA kids I have met. This is a personal
decision and the three OMA kids that I know have mild cases. These kids just
need
a little extra help in the classroom.
My daughter is 18 months has just been diagnosed with OMA. When she was a small baby we new there was something wrong as she didn't reach any milestones and was never interested in objects. She underwent numerous tests and at 8 months she was diagnosed with congenital myopia of -10.5, but her orthopist couldn't understand why she pulled her head round to the side repetitively so she videoed her doing this and researched it and came to the conclusion that she has OMA aswell as Myopia. From reading this website it seems that other children were diagnosed through MRI scans, yet my daughter was just diagnosed by her orthopist observing her, is it necessary to have the scan for diagnosis? We are told that the two conditions (OMA and myopia) are completely unrelated, however I am finding this difficult to believe since both conditions are rare and both are affecting the eyes. I would be very interested and grateful to hear if anyone else has both of these problems or if anyone could shed a bit more light on the matter.
Hi Tina,
Our son Alex (now 6.5yrs) was diagnosed at 4mths with OMA and at that stage we had done a CT scan only which showed cerebral atrophy (this finding was later disagreed with when we had 2nd opinions from drs after we had moved interstate). However the neurologist who we saw for a secon opinion ordered an MRI when Alex was 18mths old which showed a number of things - firstly he had nodular heterotopia which is a type of neuronal migration (nodules of grey matter where they should not be as did not "migrate" correctly when the brain was forming. They also found an AVM which is an arteriovascular malformation - spidery web of artieries like the strawberry birthmarks you see sometimes but in ALex case on his brain and due to this he also has a venous aneurysm which is where the vein is enlarged more than it should be due to the AVM. We have not operated due to where it is located which is coincidentally near the occular motor area of the brain - who knows like our neurosurgeon says it cou
Kind regards
Dawn
Our daughter had an MRI when she was 4.5. The MRI showed
enlarged
ventricles and loss of white matter in the parietal lobes. She was
diagnosed with OMA at age 4.5. Hers doesn't seem to be the typical
OMA.
She only jerks her head under certain circumstances, but her
eyes never
track objects. This is interfering with reading and
writing. Our daughter
also has cortical visual impairment, CAPD and
CP. Most Dr's will say that
enlarged ventricals occurs early in the
preganancy, but it can occur anytime
in utero, during or just after
birth. Enlarged ventricles are common in
preemies. I think that's
why Drs. assume the enlarged ventricles must have
happened early.
The less damage to the white matter, the later in the
pregnancy the
damage occured, typically. Enlarged ventricles with or without
damage to the white matter happens due to lack of oxygen.
Michelle
Hi Tina,
My son had a brain MRI done when he was 6 months
old and the doctors found
"mild prominence of the ventricles and sulci,
slightly more than expected for
age." He is now 9 years old and I would
guess, based on what I have read on
this site, that he doesn't have a mild
nor a severe case of OMA, maybe somewhere
in the middle.
Nina
My son just had an MRI done this week and the results
show
enlarged ventricules. The Dr. told me that this
happenend very early in the
pregnancy. My son was dia
with COMA at 9 months old and I was just wondering
if
anyone had there OMA child MRI done and what did the
MRI show. I am
trying to find out if this is common in
our OMA children.
Thanks for all your help.
Tina
What a great idea Cindy,
Our daughter (7 yrs old) loves a
"wobble pen" her OT suggested. Our 3 yr
old fights over it as well. They are
readily available here in Australia.
It is very fat, so easy to hold, but
vibrates, so great for proprioceptive
input. It's something Nicole happily
picks up any time of day! We also
have these frogs/crocodiles with curled up
tongues which stretch out when
you squeeze them. Great for strenthening thumb
and index fingers. Nicole
also enjoys picking up small bits of pasta with
tweezers, and we have been
able to progress to cornflakes - the aim to pick
up without breaking the
flake, which works more on control.
Just some of
her many favourites.
Linda
Hey Cindy~ good idea....
Reed loves a new "toy" at PT called
SIT-AND-SPIN.
It is like an over
sized lazy susan (disc) that she sits on, with a column
in the middle. She
wraps her legs around the column...and there is a smaller
size disc that is
attached to the top of the column that she turns (like a
steering wheel, but
horizontal).
When she turns the "wheel", she spins.
She just cannot get
enough of this activity (reminds me of some reading on
vestibular
stimulation, and how much MORE of it OMA children seem to
crave....written in
"What's going on in there" - Lise Eliot, Ph.D).
The turning that is required
by Reed is helping with her upper body muscle
tone, while the muscles and
balance required by her lower body are getting a
workout as well.
Her physical therapist tells me that "Toys R Us" sells these
SIT-AND-SPIN's.
I know what Reed's getting for her birthday!
Rachelle
(Mum of Reed, COMA, 3 yrs.)
. A three wheeler with their feet
strapped in, and you
wheel it around everywhere daily, makes their legs work
as in a therapy,
(patterning of the brain), but they might think its just a
lot of fun.
Kindergarten gym, one on one, greatly, helps. Walking on the
sand either in a
little sand pit in the back yard it would have to be long,
or a walk on the
beach, even in the shallow water is all therapy but also a
lot of fun.
Swimming, or just walking in water improves coordination and
also muscle
tone.
Hey - lets all post our "favorite" Physio/OT/SP
practice~exercise
every week. Help share some of our best ones.
Here's
one from us. Dan, 5 yrs is having trouble with stamina
holding crayon,
pencil etc. To strenghten grip, we are giving him
squirt guns, spray bottles
in the bath tub to "work" his hands. It
is especially fun when you make a
"target" out of shaving cream on
the tile wall & let them "shoot" the
target with the squirt gun.
(this also cleans your tiles-hee hee) ~ Cindy
Dear Jenny,
Your son has probably given away the signing
and the picture boards, and instead using more and more speech as he interacts
with the able bodied children everyday. My son did!
I think they are very
bright, and learn to compensate for all their differences, and come out a lot
better over the years. Sometimes other people do not realize how bright they are
but eventually they start telling you, and that makes everyone proud. They have
such a hard road to travel but they get there!
Take care
sandy
I THINK SWIMMING WOULD BE SO GOOD FOR CHRIS. HE HAS CHRONIC
SINUS AND CHEST PROBLEMS. HE ALSO HAS SCOLIOSIS, AND SUFFERS FROM BACK PAIN. HE
DOES RIDE A BIKE. HE HAS TAKEN SOME TREMENDOUS FALLS OVER THE YEARS, I MUST SAY.
HE IS SO CLUMSY AND UNCOORDINATED THAT HE ALWAYS HATED SPORTS. HOWEVER, IN THE
WINTER UP NORTH WHERE HE STILL LIVES, HE CROSS-COUNTRY SKIS AND JUST LOVES
IT!!!! . IT IS ONE OF THE MOST INTENSE EXERCISES ONE CAN DO. NEXT WINTER HE WILL
BE IN VICTORIA, SO X-COUNTRY SKIING WILL BE OUT.
YOU MUST BE CORRECT ABOUT
OMA AND RESPIRATORY PROBLEMS I THINK. HE IS ILL SEVERAL TIMES A YEAR WITH SINUS
INFECTIONS AND BRONCHITUS, AS WELL AS EAR ACHES . I HAD A TERRIBLE TIME WITH HIM
WHEN HE WAS A CHILD. NEARLY LOST HIM FROM PNEUMONIA.
My son had a persistent cough as well. He had it from the
time he was born.
As a matter of fact, he was hospitalized when he was 3 mo.
old for
pneumonia. He also had a strider when he was an infant. He is 11 and
just
had his tonsils out in December. Before that, he was having strep
throat
about every other month and seemed to constantly be on antibiotics.
Every
single time he gets sick....regardless of whether it's a sore throat
or
tummy ache, he has the cough accompany it. And the cough continues
on
FOREVER! He was diagnosed with asthma when he was in 3rd grade and we
had
him on inhalers and steroids but discovered he didn't really have
asthma
because during one of his horrible sicknesses, I was able to get into
a
Pediatric Pulmonologist right away and they did a bunch of tests
and
determined that it was not asthma....but the doctor told me his
lungs
sounded like the lungs of an 80 year old. Very comforting....NOT!
They
said he didn't have pneumonia either and they swabed his nasal passages
to
make sure it wasn't pertussis (which it wasn't). Regardless of that,
they
decided to start him on Zithromax and by the next day he was almost
all
better. Therefore, since that time, my doctor has put him on
Zithromax
whenever he STARTS to get the horrible cough (very croupy) and he
generally
gets better within a few days. (Where before the cough could last
for over
a month!)
I have to say though that since having his tonsils removed in December
he
hasn't been sick ONCE. (Knock on wood) He does suffer from
seasonal
allergies but takes over the counter allergy meds and is doing just
fine.
It's incredible to hear the stories of other OMA kids with some of the
exact
same issues....and then there are some that are completely different.
I
value reading everyone's ideas and experiences. Thank you to everyone
who
contributes.
Its funny, my son also had a persistent cough when he was
younger. When he
had a cold or his allergies acted up, he would cough
non-stop for hours.
Sometimes it was so bad we had to have him taken to the
hospital because the
coughing and wheezing was too much for him to handle.
Eventually we
purchased a breathing machine for the house and gave him the
treatments
ourselves. He now is 13 and isn't nearly as bad, however he still
does have
bad allergies and with the allergies is the cough.
Vilma
Drew, 14, has always had sinus problems. He also gets a cough
and it becomes
a habit. Three different times, he has coughed every 20
seconds for three to
four months. It is aggravating for him and everyone
around him. We have
done all the tests and the therapist said it was a
verbal tic. The allergist
said it may be abstract allergies. He had ear
infections the first three
years of his life, with high fevers. I wish we
had gotten tubes. Recently,
the ent diagnosed him with enlarged adnoids and
toncils. He had those taken
out. A week later he had emergency surgery for
bleeding. He is now being
tested for bleeding problems. I hope getting his
adnoids and toncils out
helps with the nasal problems. He is now breathing
through his nose. That
is something he has not done for a LONG
while.
Val
My son Ian (13) had so many ear infections his first year of
life.
I insisted on tubes and within two or three weeks he was talking.(Being
able
to hear)
He had croup at age two, so bad he was hospitalized and
tented.
We came home from the hospital on his second birthday.
Continued
to have sinus infections and when he was 9 had surgery to
remove
tonsils and adnoids. They treated the croupy cough with
staroids.
He isn't at present haveing any problems other then a crooked
nose.
Just think it is kind of strange that all of us have had these
problems?????
jason coughs early morning late at night sometimes during the
day but once he sleeps, he sleeps well. He hasnt had tonsils or adnoids out and
I dont think that will be done.
sometimes he sounds asthmatic, but the Dr has
checked him at times with no sign of asthma. A cough alone can be Asthma. Seeing
the respiratory Specialist on June 23rd so hope that will show something, and
relieve the coughing. He sometimes has a violent sneezing episode that goes with
the early morning coughing. He has had a week swimming and doing the gym
workouts, tough on him but he is also enjoying it.
Take care
Sandy and
Jason
Jason 21, has had a cough for a year now, he has had a cat
scan, given antibiotics, ventolin, reflux, penicilin,antihistamines and nothing
has changed. I as a mother, believe he needs a lot of swimming and upper
respiratory excercise, so he has been going to the gym everyday, to see what
happens. He sees a respiratory Specialist n June 23rd I think. I believe Dan was
correct, by saying these OMAers need to keep up their excercising. When he was
younger, and swam three times a week he lost a lot of (nasal mucus), which he
doesnt if he is not swimming. None of my children had colds, until after winter
was over. Spring, sinusitus etc. We keep in contact with a 29 yr old who also
suffered a lot of sinus, bronchitus, ear infections, as he was growing up.I
believe it comes with the OMA and does worsen as they get older, so fitness is a
key.
Jason has always had to wear dark glasses because of the strong
sunlight, maybe that because of Australia but goes with OMA.Take care,
from
Sandy and Jason
The one thing that i dont think can be stressed enough is-especially for the young ONAers out there, is excercise. with our condition, its more difficullt to get good CardioVascular excercise, but it is very worth the effort of trying. I didnt when I was young, and now at 31, I have hypertension, as a result of much of my life being sedentary. Only in the last few yrs did i start an excercise program, and (trying to) watch my diet more.
dan meyer
www.jason.mustbehere.com
21 with OMA website with new
pictures
please check it out and if you want to comment please do.
Jason
There is a special place in life
That needs my humble
skill
A certain job I'm meant to do
that no one else can fill.
The hours may be demanding,
And the pay is not too good
And yet I
wouldn't change it
For a moment if I could.
There is a special place in life
A goal I must attain
A dream that I
must follow
For I won't be back again.
There is a mark that I must leave
However small it be
A legacy of
love for those
Who follow after me.
There is a specal place in life
That only I may share
A little path
that bears my name
Awaiting me somewhere.
There is a hand that I must hold
A word that I must say
A smile that
I must give
For there are tears to blot away.
There is a special place in life
That I was meant to fill
A sunny
spot where flowers grow
Upon a windy hill.
There's always a tomorrow
And the best is yet to be
And somewhere in
the world I know
There is a place for me!
http://groups.yahoo.com/group/Duanes_Syndrome/
Kevin J. Scott
---------- Email Me
Hi, I have just found your site. I have a 22 month old boy with Joubert Syndrome. JS is a rare genetic disorder (recessive gene - 25% chance) that affects the development of the cerebellar vermis and brain stem. Joshua has been diagnosed with OMA. He has ataxia, hypotonia, protruding tongue and episodic hypernea (all improving with age). His milestones have been delayed. At 22 months he can crawl, scoot, pull to stand, walk with a trolley, feed himself with a fork, drink from a straw cup, sign about 35 words and loves Thomas the Tank Engine and his big brother, Jakob (3.5 years - unaffected).
I would love to hear from other parents, especially those in Australia.
Natalie
I've been following this board for a year now since my almost 2 year old was diagnosed with OMA. She'll be 2 next month. She learned to sit on her own at 8 months, crawl at 11 months, and just started walking a month ago. She's quite off balance when walking, walks like she's just learning to walk. Her speech and cognitive skills are on track.
I read this board occasionally and was going over old postings. It seems like
there are a lot of families out there who have more than one child with OMA. In
those cases, do one of the parents have OMA, too? Our experience so far has not
been difficult, I'm just wondering what our chances are of having a second child
with OMA. When I see babies now I look back and realize how different my
daughter was at first. I didn't know it at the time. There is no one else in our
family who has a known case of OMA.
I just found out my two year old niece has OMA. She is so cute and bright and it made me sad to think of the hard times she will have ahead. I envisioned her as living in a hospital for the rest of her life. After reading messages from others with children with OMA I felt much better knowing that a normal life is possible. I will keep reading this site and hope to get information to help our family give her the most we can and share with others too our experience on this journey.
Just wondering if there are any other people with OMA in the WI area. We are the parents of Joseph 4 1/2 So far we have not met anyone else with OMA and would love to do so. Joseph walked at 2 1/2 and has a speech delay but has made great gains in speech within the last 2 months.
Denise Halada
I just wanted to share some good news. My daughter Lauren
"tested" out with 20/20 vision at the doctors today.(of course oma still
present) We've come a long way from March 2001 when we were told by several
specialists that they could not detect any vision in her at all. We've gone from
no vision, bl/white only, to color to all ranges of distances to end up here.
What a blessing.
Jill
Am amazed at this site - have felt like we were "alone" in our OMA experience. We have five family members with OMA - my husband, a 14 yr old, a 10 yr old, and 6 yr old twins. All had obvious symptoms at birth - all are gross motor, fine motor delayed, but are functioning close to age-appropriate in both areas. My husband was not diagnosed correctly until our 1st child was born and we realized their head movements were the same! Were told there was virtually negligent chance of having another child with OMA - that is QUITE obviously wrong! We are constantly looking for info and doing our best for our children. Look forward to learning much more from this site!
My son, Orry, who just turned 1, was diagnosed with OMA at 3 1/2 months old - as he has gotten older, the head jerks have lessened already but are still noticable. Some people who don't realize - think its quite "cute". My daughter was diagnosed with congential nystagmus which is oscillation of the eyeball & has a considerable head turn when looking off in the distance. She can look at you or an object straight on closer up. Genetics, they say - 25% chance of having children affected but as both children seem to have mild cases so we're feeling that it isn't that bad considering what could be....
I love your site - please keep up the good work! Samantha Williams
Brand new to this site.My son Mason has been diagnosed with oma. From reading things in the web site, I feel quite lucky. Mason has the head jerks, but seems to be subsiding as he gets older. I noticed the jerking since birth really, and after the mri and eeg came out normal, the nuerologist had us see an opthalmologist, and at this visit, (when he was 10 months old) is when we were told of the disease. The reason that I feel so lucky is that Mason is beyond what his motor skills should be...at 10 1/2 months old, he is almost walking, plus he is saying dada and nana, and mama, and alll other sorts of sounds. I was very pleased to find this sight though, it gives me peice of mind that there are others out there that I can relate to.
Sherry
hey im 17 now and am the first one with OMA in my family. I've been dealing with it as long as I can remember but am glad to say that asside from a few issues I hardly notice it at all. I can spin in circles fine and dont have too much of a problem driving. The only real problems that im faceing still today are some tracking issues and have difficulty balancing (still can't ride a bike to this day) but the only issue that really bugged me through out my life so far was dealing with others. They ask me and naturally used to pick on me wondering why Icould never ride a bike or why i can't catch etc. I simply tell them that i have OMA. They dont even bother asking me what it is i just say a bunch of big words that they have never heard before and that shuts them up pretty quick. Thats about it,anyone reading this is welcome to respond or e-mail me if they have any comments or questions. Later
Sorry Diane O'brien I called you Denise instead of Diane many
apologise and I apologise also for putting my name as j smith at one time
replying to you. The message below should of read Diane and Meredi
The OMA
list is also originates from the UK.
Love Sandy
Hope everyones Christmas
was FANTASTIC, Take Care
About 18 years ago my sons paediatrician and I sent a letter
to Dr Leonard Rappaport of Boston Childrens Hospital Massachusetts, and he sent
myself and the Paediatrician information on OMA when there where 3 cases in the
USA, and one in Australia. I dont know whether he would still be working there
but he could be. My sons Doctor was very thrilled that the Dr in Boston also
took the time to send a letter to me. I sent data on my son at the time, which I
told him he could keep as I had duplicates but he sent them back anyway.
If
he is still working he would now have more knowledge after all these years.
TAke Care
SANDY
One would think that any severe reaction to a toxin such as brain swelling or encephalitis could cause damage to the still developing brain, especially in newborns when the brain barrier is not yet closed. I would never say vaccinations are the cause of all OMA cases; just one possible environmental cause. I don't think it's dwelling on the past; on the contrary, now that my daughter displays so few OMA symptoms I have more time to wonder about these things. I had read in medical literature that the causes of OMA could be genetic or environmental.
I have a 3 year old daughter with this condition. The first in my family. I was quite concerned in the beginning but have noticed quite a bit of changes in her. She now can look you straight on and the head jerking has lessoned considerably. She still does when she is quite tired. I'm glad to have found this site - felt alone for the longest time.
(copied)one of dan meyers piecesFrom: Dan Meyer, e-mail:
danbm@home.com
Date: 16 Jul 2001 at 21:52
Replying to: message 1001.html
Hey
I had all of the same problems at 11, and still do at 31. You are very lucky
to have a webstie such as this-I felt very isolated, and did not understand that
my problems were related to OMA-i just thought i was strange.
The one thing
that i dont think can be stressed enough is-especially for the young ONAers out
there, is excercise. with our condition, its more difficullt to get good
CardioVascular excercise, but it is very worth the effort of trying. I didnt
when I was young, and now at 31, I have hypertension, as a result of much of my
life being sedentary. Only in the last few yrs did i start an excercise program,
and (trying to) watch my diet more.
dan meyer
notice the date entered
Dear Denise and Meridi,
If I did have a child, that did
have a problem after the vaccination, I would certainly question it, I know my
sisters daughter had a dose of demasin not sure if I written that correctly, but
the blue cough medicine that thousands do use, and her daughters head swelled up
like a mongol child I dont like to sound rude here but thats the only only way I
can describe it. The swelling went down ecetera, and she has to wear a medic
alert bracelet to stop anyone giving her amoxylin or any penicilin. She was fine
later and still is. I would question if a child had OMA if it was due to an
injection, I would think the injection was the cause of disabilities. In other
words I wouldnt call a child with problems after a needle and without problems
before it an OMAer. I certainly do feel for anyone to have a child with nothing
wrong to suddenly have something wrong due to a substance given to them. I know
there would be a lot that have not registered their children, but it is best, if
you want to remain annonomys thats fine as it just counts how many there are,
and we are relatively new really to this site just a year or 2 and when my
husband found it and told me, I read and read and read, and I was exhausted but
I wanted to help people to adjust to all the little problems and to let them
know that it is a struggle but they will get through it. If you want to help
someone and be a friend and put your name down and e-mail address down too so
someone can talk to you privately thats OK as well. To me all these children are
unique, and so beautiful,we take for granted, what they have to find a way for
their bodies to achieve. I put my name as J Smith and put the list up because I
thought I was actually puting too much informormation down which some would
probably think (get off) but I saw it thought it was interesting and so I copied
and pasted and I realised I had missed the last bit so later I went back to see
what I had missed, which was actually also interesting. Some children diagnosed,
probably arent OMA but some doctors puting a name to something. It certainly is
excellent thinking to be open minded and to question anything, thats the way
people will help others. I hope I havent offended anyone because that isnt what
I want to do I just want to help. The oldest OMAer listed is a Dan Meyer, an all
you have to do is go to search at the Whats new page, and put in the name and it
will come up with all the entries he has put it. Unfortunately he no longer has
the same e-mail address. He worked at a school in Chicago,and he was in his 40's
I think. Thats all for now I know I go on and on
Take Care thinking of you
all and hoping all goes well with you.
Sandy
Sandra,
Firstly I'd like to say how much your postings on
here are appreciated as they are a great encouragement to others, especially
those whose children have been recently diagnosed with OMA. Vaccines with
Thimerasol have been around for many years but the number of vaccines was
limited. Now we have such things as the Vitamin K injection at birth, Hep B,
Measles, another measles and now they're talking about Smallpox and Meningitus.
Of course the statistics from this group could never be used to prove anything
as there are a lot of factors to consider. eg access to internet and accuracy of
diagnosis. Although my granddaughter was only the second diagnosed in WA there
are probably others as yet undiagnosed. As OMA is so relatively rare, I doubt
that medical studies would ever be done to find out if there is such a
relationship to vaccinations. I've done some research on this and apparently
some children/people have bodies with a low tolerance to heavy metals, their
bodies don't eliminate them as they should. I'm a great believer in hope, hope
that the damage can at least partly be undone. A lot of information about
chelation for heavy metals is available on the net, but you first have to get
rid of any amalgam fillings before the treatment. The other day I found a site
called http://www.magneticclay.com/ This site sells a clay bath that is supposed
to chelate for heavy metals as well. It may be a ripoff, but some ppl give
testimony to it. Vaccination Liberation Information site also has a lot of
information which could be informative and helpful as well
The reason the high USA results are interesting is that the preservative used in some vaccinations (esp. Hep B which was compulsory in many US states) contains mercury. Tolerance to mercury varies which is why some babies have severe reactions and some don't. One of the possible reactions to this vaccination is swelling of the head which in turn affects other things in the brain. Vaccinations are perfectly safe for millions of people but for some susceptible children they cause a bad recation which is why you would not see everyone who has ever been vaccinated with OMA!! The thing is I suppose, if I'd known the vaccination they were giving my baby had something as toxic as mercury in it I don't think I would have ever let the doctors near her. The other thing is, I hate to be cynical, but vaccinations are big money to drug companies so how would we ever know the truth of it for a long time to come? All I know is that after by baby was born perfect they gave her an injection and after that she went jaundiced and in the weeks that followed her head looked swollen (despite a text book birth) and months later we noticed something wrong with her eyes. They gave her a catscan and said she had benign hydrocephalus and later they said she had OMA. I'm not looking for someone to blame for my daughter's OMA but I do think it's possible that environmental factors may have played a large part.
What wasnt put on was that there is 143 female and 170 male and 15 unknown on the OMA's list. Jason was the first in Australia apparently when the USA had 3 known cases, and at least one or more where adults at that time. If it was due to vaccinations etc, wouldnt there be more than 155 in the USA and more than 18 or whatever it is in Australia. OMA is such a rare problem if it was due to vaccinations worldwide, out of billions of people there is only 3OO plus OMA's. I know I never would of even taken a headache tablet when I was pregnant and he was given the normal childhood vaccinations but OMA was present at birth. Just a thought! My son was a natural birth but I had an epidural for my first and third girls both without OMA.Take CAre.
Hi, I have a 2years old niece who was diagnosed with OMA at 4
months. She has physio therapy but it's taking so long to walk (she is
hypotonic). Doctor says the use of "splints" (I don't know how you say in
English) woud help. Has anybody tried them?
Thanks for this site!
I am astounded by the number of OMA cases in the USA as compared to the rest of the world, especially since this site is the only one of its kind and is universally accessible. Does anyone have any ideas as to why there are so many cases in the USA? Does anyone else think it's vaccination related? Any comment?
Hi, My name is Lisa.
I have an 18 month old son who has
been misdiagnosed many times, and now has a great neurologist and eye dr. who
just diagnosed him with OMA.
If at all possible, can you email me as much info on OMA as you can find... I'm Desperate!!
Thanks to J. Smith for that info. What I noticed about the
figures was how disproportionately high they are in the USA. Could this be due
to the fact that in the USA they have a lot more vaccinations ( eg hep B) that
aren't given in other countries. (I believe that the autism rate there is also
out of proportion. Autism is also a neurological disorder). Could we also be the
unwitting victims of overdoses of thimerasol? Its interesting how the high
figure dropped off suddenly 3-4 years ago. Eli Lilly, the company who produced
and marketed thimerasol took it off the market in 1991 but supplies could
continue to be used until 2010 but are obviously dwindling. I'm not interested
in the litigation side of things as its not constructive. Its just that I've
heard of very good results on Autistic children when they are chelated for
mercury poisoning. If we knew of any connection here, perhaps we could try this
on our children. Its probably a long shot but what do others
think?
Diane
PS. My granddaughter was vaccinated for hep B soon after
birth although its not normally routine in Australia. They did it because her
father was African and therefore she was considered high risk.
Dear Dianne,
If you look at the Whats New under your piece
that you have entered, if you go down to the 19th of November 2002, there is a
message called, Summary of OMA Registration on the 18th of November 2oo2 from
the OMA Moderator. To benefit a lot of other parents and families I simply went
to that site and copied and pasted what the Moderator had written. Current ages
of all that have been registered, and from each country. I found it very
interesting and I think worthwhile to be able to simply look it up. Hope it was
of some use to you. I would love to have contact with other Australians.
Being the Grandmother of one of the australian OMA statistics on J.Smiths list, I'd be very interested to know more about this list. I'm curious as to where the figures come from, are they from the OMA site or are they worldwide medical statistics? I also wondered if the ages shown are the age diagnosed or the present age of the person. Perhaps J Smith could fill in the gaps here. I'm interested in this as I'd like to know if there are any environmental factors which have caused the increase in diagnosis of this condition . If this list shows the present age of people then is it due to better diagnosis of the condition or might some other factors have contributed to the figures?
Hi, I have a 24months old niece who was diagnosed with OMA
at
five months. She did vision therapy for some months. She currently has
physio therapy but has a lot of problems with balance. She doesn't walk yet and
she hardly crawls or stand with help. we are very worried since it is taking so
much time to improve her balance and motor skills. her parents don't read
English but I have told them about this website, any of you speaks Spanish? we'd
appreciate very much your experience.
thanks!
OMA cases database analysed on: 18-Nov-2002
Total number
of cases found: 328
Current Location
66 Unknown
18 Australia
2 Belgium
16 Canada
40 England
2
Finland
4 France
5 Germany
2 Greece
1 Hawaii
2 India
2
Italy
2 N Ireland
1 Netherlands
1 Norway
3 Scotland
2 Spain
1 Switzerland
155 USA
2 Wales
1 Yugoslavia
Age Range
18
Unknown
2 6-12 mnths
4 12-18 mnths
10 18-24 mnths
11 24-30 mnths
8 30-36 mnths
36 3 yrs
30 4 yrs
24 5 yrs
25 6 yrs
21 7
yrs
17 8 yrs
23 9 yrs
7 10 yrs
15 11 yrs
12 12 yrs
5 13
yrs
4 14 yrs
5 15 yrs
4 16 yrs
5 17 yrs
5 18 yrs
7 19
yrs
1 20 yrs
3 21 yrs
3 22 yrs
2 23 yrs
1 24 yrs
1 25
yrs
1 26 yrs
2 27 yrs
6 28 yrs
2 29 yrs
1 31 yrs
1 32
yrs
2 33 yrs
1 34 yrs
2 37 yrs
1 40 yrs
Sex
Just to let everyone know, I'm unsubscribing the Yahoo OMA chat group while we move from London to Houston. I'll be back in a few months. Talk to you then. susan
I am a researcher at Southern Illinois University and I am examing a possible ocular motor deficit in adolescents with Attention Deficit Disorders with and without Reading Disabilities. I am interested in how many of your children/adults have been diagnosed with a learning disability. I could find no data or research in this area. I am willing to do the research. Please send me comments, thoughts, resources and any information you find important to my above email. Take care 8>
Ihave a 20 month old son who was diagnosed with OMA at eleven months. I have found out all that i know about OMA from this website which i think is fabulous for parents like myself who know very little of what to expect for their child. Ben is an extremley happy little boy!!. He currently has physio therapy, and we are waiting to start speech therapy soon. He is not yet walking, he can pull himself up, and gets frustrated because of this. I would love to hear from any other parents, especially in the u.k. who could give me any other information related to OMA, and how best I can help my son in preparation for nursery.
Hi Michelle,
What is C's name?
Im glad that new Mums with OMA children do have this
website, just so they can reach out, and have a laugh or maybe a cry, about the
different things these beautiful children do!
Jason was such a delightful
little baby always laughing and always had a big smile even though his life was
very difficult. He was a very floppy little boy (description could be like a rag
doll). I use to use my thumbs to hold his head up while shopping in the
supermarket using the trolley. The head jerks are usually to lock the eye into
position at the corner of the eye, so it looks as though the eye is turned in to
the nose, but that is so the eye stays without, any movement, Jason had some eye
rotation sometimes and that looks horrible. Its as though they are on a swivel,
if you can understand that. That was not a pretty sight I first noticed that
when he was 13 months old I knew his eyes were constantly moving but I thought
he was looking at all the surroundings. He was being looked at by a specialist,
so Jason was on his back, when I noticed for the first time they
rotated.
Jason says for C to know her way around microsoft XP shes doing
extremely well. How old is the older brother? Jason hated programming but he
does web design so he doesn't mind it as much now.
The Spastic Centre is
generally for children with cerebral palsy, Jason went there because all the
speech therapist were going there, but he was suppose to go to Regency Park for
young disabled. He started walking at 2 yrs 3 months so when he entered the
Spastic Centre he was walking like a 1 yr old with a wide gait.
I think your
description of C's quick head jerk is when the child locks the eye into position
in the corner of the eye. The head jerks disappear because later they can just
blink or something, quite unnoticed to do the same thing. Clever aren't
they!
Take care
Catch you soon
Sandy
schurr@bigpond.com
Dear OMA Guestbook, I have been searching for help for a former student of mine who is 11 years with Duanes. When I had her as a 10 yr old student she was the slowest reader in my classroom , yet an extremely bright child who got good grades. However, she DISLIKES reading. I fear that as she goes to higher grades and is required to read and for standardized testing like SATs she will be at a disadvantage. Her mom says that she has been assured by doctors that the Duanes does NOT affect reading. I DISAGREE !I never knew what Duanes was before this student. Can you please give me some resource to follow up on this or some advice....There is no noticeable (to me ) head tilt or other things that I have read here so far. Thank you very much for any help that you may be able to share.
My son is 5 with OMA and I find this site very informative.
Any one
from my area or with a similar scenario please feel free to send my
wife
and I an e-mail at the above address. We would love to compare notes
and
maybe give and recieve pointers on things that have helped us treat the
symptoms of OMA. We are also looking for someone who might be
familiar
with the contact information for a Dr Taluse who used to practice
in
Florida. Thanks. Look forward to hearing from you all. Tony
Hi! I'm Brian. I really like your site, it's usefull and informative. I am working for discount magazine subscription comparison service. I find your site while searching for magazine related sites and It's a pleasure to sign your guestbook. Thanks!
children with OMA are very bright intelligent children and as
adults they are too. They do not need sheltered work shops or a school for
intellectually challenged children. They can learn anything you teach them being
a different skill or language.Its definately harder for them but the younger
they are the better as little children a like little sponges they want to learn
so much. They do need early intervention programs. My son did sign language at
three, german sometime through primary school, and his teacher said he was
articulate in German ( that was because it was new,) so it was being learnt
properly but being Australian and talking english he learnt bad habits and
speech therapy was needed to correct learnt errors. He hadn't learnt bad habits
in German so his speech was clear. So if you know more than one language teach
your children it can only be an advantage.I had a hard time trying to convince
teachers that he was very bright but never give up the teachers will eventually
start to tell you, gee he or she is very bright.It is a very long hard thing to
achieve anything but achieve they will. With your undivided attention they will
get frustrated but keep believing in them. Jason is 21 in November 7th love to
hear your emails for (happy birthday)
We didnt have anyone knowing about OMA
but day by day we got through it, and come out the other end. Exhausted but well
worth it.
Take care please aim very high for your children then if they come
out just under that, you will be proud, very proud parent, I know, Im one of the
parents with an adult with OMA. I'm very proud of the other adult OMA's too
because they are what they are with little help because it is so rare. They
struggled through without knowing, without any specialist, help some of them.
Now you have this site and help all around the world which is only a message
away and it may only take a few minutes of your time to find out something new
and also have friends all around the world because they know what you are going
through and just want to help. The most precious gift in the world is peace of
mind. Just reach out and put your messages on the guestbook and whats new and be
happy because that little child will go through a lot to achieve what we take
for granted everyday.
regards Sandra and Jason
Sandra and Jason
Great web site!! There is also a web site offering information for parents of children who have delayed speech and language at http://www.speechville.com.
http://www.strabismus.org/Duane_Syndrome.html
http://www.nectac.org/contact/ptccoord.asp
Go to website
and then click on your area.
Hi my name is Pam Reeder and I have a four year old daughter with OMA. It has been a long time since I have written on this board. Ashley was diagnosed first as being blind. It then went to periodic alternating gaze disorder, then nystagmus. I came across this website and brought the symptoms to the attention of her peds. opthamologist. Sure enough that is what she had and still has. She was diagnosed with oma when she was 6 months old. she had a classic case. Well, we started associated oma with different diseases, (her doctor and I) Ashley had dev. delays, no speech, autistic like characterists but no autism, kidney problems, low muscle tone among other things. her doctor and I saw a connection of oma with mitochondrial disorder(a nueromuscular disease). We had a lot of blood work done and it suggested that ashley had this mito myopathy. Well, we had a muscle biopsy done and sure enough it came back stating that she had mitochondrial myopathy. Ashley just turned four last week. She finally started walking in october of last year, about 3 and a half year old. She still doesn't talk. we sign and so oral motor activities. SHe is low on fine motor control. She has a lot of issues with balance. She still has problems with kidneys, and tactile issues. She still has the OMA. Her head turning is still prominent. her vision acuity was good until our last visit with the peds. optha. He says she has a little strabismus but not enough to correct with glasses. sandra, this is why i had asked about disablity pension. Ashley was labeled disabled by the ssi office, but my husband made too much money. also, i have had to stop private therapy because insurance would not cover it. She goes to a special ed preschool where she gets some therapy but not as much and as aggressive as I think she needs. Also, Beth, Ashley has behavioural issues. She doesn't know how to calm herself. Well, i know this was long but I thought I would give the lowdown, that way if anyone has any question , feel free to ask. Thanks..............Pam
I have three other children that is not affected by any of this...makes you
wonder...