Myotonic Chat Group
PaRay (Dec 27, 2006 7:47:57 PM)
marciamellows (Dec 27, 2006 7:48:13 PM)
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PaRay (Dec 27, 2006 7:48:23 PM)
Hi MM
marciamellows (Dec 27, 2006 7:48:49 PM)
Hi PaRay. How is Ann this week and how is the weather there?
marciamellows (Dec 27, 2006 7:49:09 PM)
I have not been on the chat for two weeks and I really missed everyone.
PaRay (Dec 27, 2006 7:49:16 PM)
Both are good. How are you guys?
PaRay (Dec 27, 2006 7:49:42 PM)
You can make up for missing this weeki.
marciamellows (Dec 27, 2006 7:50:15 PM)
We are very good. Went to Las Vegas last weekend with 2 of our daughters. Our 3rd daughter is in Ohio with my granddaughter and her husband to spend the holidays with his family. They are having WAY too much fun!!!!!!
PaRay (Dec 27, 2006 7:50:57 PM)
Ann's mother and our daughter are here.
PaRay (Dec 27, 2006 7:51:40 PM)
Make any money in Vegas?
suziern (Dec 27, 2006 7:54:13 PM)
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suziern (Dec 27, 2006 7:54:30 PM)
Hi Marcia and Ray
suziern (Dec 27, 2006 7:54:38 PM)
I got in right away this time
PaRay (Dec 27, 2006 7:54:48 PM)
Hi Suzie. how are things?
suziern (Dec 27, 2006 7:54:50 PM)
I usually have to wait 15-20 minutes
suziern (Dec 27, 2006 7:54:56 PM)
I must be fixed now
suziern (Dec 27, 2006 7:55:04 PM)
about the same
barryc (Dec 27, 2006 7:55:12 PM)
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suziern (Dec 27, 2006 7:55:22 PM)
I am going to Washington DC February 11-13 to advocate for MD funding, I have never been.
suziern (Dec 27, 2006 7:55:31 PM)
Hi Barry
barryc (Dec 27, 2006 7:55:33 PM)
hi all
PaRay (Dec 27, 2006 7:55:38 PM)
That is good.
PaRay (Dec 27, 2006 7:55:47 PM)
Hi Barry,
suziern (Dec 27, 2006 7:55:49 PM)
Did you all read the MMD article in quest this past issue?
barryc (Dec 27, 2006 7:55:59 PM)
dress warm,,, dc is almost as cold as PARAY land.
suziern (Dec 27, 2006 7:56:37 PM)
just an article about MMD learning disabilities being associated with sleep apnea
marciamellows (Dec 27, 2006 7:56:39 PM)
Hi everyone. Sorry, I had to go and get dinner out of the oven.
PaRay (Dec 27, 2006 7:56:43 PM)
February is cold most of the time.
bette (Dec 27, 2006 7:56:53 PM)
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suziern (Dec 27, 2006 7:56:53 PM)
I guess after a year on Bipap I will see for myself if the learning disability has improved
marciamellows (Dec 27, 2006 7:57:09 PM)
suziern, Will you have any time in DC for sight seeing? Is Billy Dean going with you?
suziern (Dec 27, 2006 7:57:11 PM)
Hi Bette
PaRay (Dec 27, 2006 7:57:17 PM)
Hey Bette.
barryc (Dec 27, 2006 7:57:51 PM)
suziern... I think wthe study showed a correlation...but not much evidence of which causes which...LD or Sleep Apnea... or why the correlation...
marciamellows (Dec 27, 2006 7:57:56 PM)
Hi Bette. Are you getting out of bed in the mornings any earlier these days?
suziern (Dec 27, 2006 7:58:11 PM)
I am not taking him to Capitol Hill this year just because I am not sure how strong the language will be on MMD, I am going to see how it goes and maybe take him next year. They said kids as young as 5 years old can go and advocate for funding.
barryc (Dec 27, 2006 7:58:50 PM)
suziern... go to it kid! we wil all be shouting with you...
bette (Dec 27, 2006 7:59:01 PM)
Hi all, hope everyone had a great holidaay.
suziern (Dec 27, 2006 7:59:08 PM)
Does Robin live in Washington DC?
marciamellows (Dec 27, 2006 7:59:16 PM)
Do any of you make New Year's Resolutions? I don't because I never keep them anyway.
bette (Dec 27, 2006 7:59:29 PM)
No Marcia, I'm getting worse. I didn't get to the kitchen until 2 p.m.
suziern (Dec 27, 2006 7:59:29 PM)
Thank you Bette for the card! Nice of you and Mark, especially since you do not celebrate Christmas.
suziern (Dec 27, 2006 7:59:53 PM)
Hey, I just noticed I have not got kicked off yet!!!
suziern (Dec 27, 2006 8:00:03 PM)
How is Anne, Ray?
barryc (Dec 27, 2006 8:00:09 PM)
suziern... you are blessed tonight.
bette (Dec 27, 2006 8:00:17 PM)
Suzi, you are welcome. Better late than never I say.
suziern (Dec 27, 2006 8:00:24 PM)
I saw pics of you and Anne on Corey Glicks' s pics and she looks just fine.
marciamellows (Dec 27, 2006 8:00:28 PM)
Anyone have any suggestions for Bette? She cannot seem to be motivated enough to get out of bed in the morning.
PaRay (Dec 27, 2006 8:00:29 PM)
Doing about the same.
bette (Dec 27, 2006 8:00:55 PM)
Too many good "court" shows on T.V.
suziern (Dec 27, 2006 8:00:58 PM)
BillyDean's older half sister takes provigil with great success.
marciamellows (Dec 27, 2006 8:01:27 PM)
I had a Chanukah party for about 50 people. Next year Bette and Mark are going to come.
marciamellows (Dec 27, 2006 8:02:23 PM)
Jeff and I went to Las Vegas with two of our daughters last weekend.
barryc (Dec 27, 2006 8:02:26 PM)
julie made me light two mennorahs... I am now an official fire bug.
bette (Dec 27, 2006 8:02:35 PM)
Regarding the conference in May, I just found out we have a wedding on the 19th. Don't know if it's aftertoon or evenomg uet/ It will be in Redondo Beach.
marciamellows (Dec 27, 2006 8:03:20 PM)
Barry, when we have our Chanukah party we have about ten menorahs so that any family group that wants to can light one.
barryc (Dec 27, 2006 8:04:26 PM)
my daughter decided that no only did she enjoy the menorah gig, but she also wanted to light up all the scented candles in our condo... lights and smells ... all lovely...
marciamellows (Dec 27, 2006 8:04:31 PM)
suziern, will you have any chance to do any sight seeing in DC? My favorite thing that I saw there was Ford Theater where Lincoln was shot and the bed across the street where he was taken.
marciamellows (Dec 27, 2006 8:05:11 PM)
Barry, the aroma of lots of scented candles must have been wonderful!
bette (Dec 27, 2006 8:05:12 PM)
I,O.K. Marcia. We have two so we may bring our own.
barryc (Dec 27, 2006 8:06:16 PM)
sukziern,,, be sure to visit the pres and his gang... cannot wait to hear his "new" Iraq policy... he is so forward thinking!
bette (Dec 27, 2006 8:06:46 PM)
Just as I got used to the bi-pap the mask started tp leak. I just got a new one and now I have to start getting used to it all over again.
barryc (Dec 27, 2006 8:07:13 PM)
yes, marcia... vanilla, stawberry, and chocolate no name just a few...smelled like an ice cream parlor to me.
barryc (Dec 27, 2006 8:08:07 PM)
what a drag bette... we need to get you partying again..
suziern (Dec 27, 2006 8:08:07 PM)
Bette, do you wear a full face mask like BillyDean?
vdoman (Dec 27, 2006 8:08:47 PM)
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suziern (Dec 27, 2006 8:08:49 PM)
Marcia, the sessions on Capitol are all day Mon and Tues and I am leaving Tues night so will only have Sun and Monday evening to look around
suziern (Dec 27, 2006 8:08:53 PM)
I have never been there
bette (Dec 27, 2006 8:08:58 PM)
I lost my last message. I had commented that just as I got used to wearing my bi-pap the mask started leaking. I just got a new one and now I have to start all over again My new one fits over the noes to just under the lower lip, does that sound right?.
suziern (Dec 27, 2006 8:09:26 PM)
Yes that sounds like BillyDean's mask
marciamellows (Dec 27, 2006 8:09:35 PM)
Hi vdo. How are Suzie and Kevin?
suziern (Dec 27, 2006 8:09:39 PM)
He has to wear a full face mask since his mouth stays open at night
vdoman (Dec 27, 2006 8:09:41 PM)
Hi Everyone
suziern (Dec 27, 2006 8:09:48 PM)
Hi Corey
barryc (Dec 27, 2006 8:09:54 PM)
hi mr. fresno
jerisy (Dec 27, 2006 8:10:16 PM)
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vdoman (Dec 27, 2006 8:10:23 PM)
Suzi and Kev are doing ok. Kev will have his 24th birthday on Sat
suziern (Dec 27, 2006 8:10:24 PM)
I am probably going alone.
suziern (Dec 27, 2006 8:10:38 PM)
Dean's dad has a home in the DC area so I may look him up.
bette (Dec 27, 2006 8:10:44 PM)
Hi Cory. Are you blowing away in Fresno? If I go outside right now, I will blow away.
suziern (Dec 27, 2006 8:10:55 PM)
Wow! 24 years old!
suziern (Dec 27, 2006 8:11:04 PM)
Our oldest is 25.
vdoman (Dec 27, 2006 8:11:05 PM)
No wind just cold rain
barryc (Dec 27, 2006 8:11:05 PM)
corey, check out my email to you on your new reservation for the Marriott at the tampa int'l airport...I think you will do better staying right at the airport rather than close by.
marciamellows (Dec 27, 2006 8:11:22 PM)
Wow! jerisy is here! For anyone who does not know, jerisy is my sister-in-law (Jeff's sister). She lives in San Francisco.
bette (Dec 27, 2006 8:11:25 PM)
Hi Jeristy, it's been a long time. Welcome back.
suziern (Dec 27, 2006 8:11:34 PM)
Hi Jeristy!
barryc (Dec 27, 2006 8:12:10 PM)
ms SF... do you plan to visit Arnie S after his leg surgery?
suziern (Dec 27, 2006 8:12:24 PM)
When do you and Terry go to Oregon Barry?
jerisy (Dec 27, 2006 8:12:29 PM)
At last, I made it to the chat. Holiday Greetings and a Happy New Year to all. It has been awhile and I hope I am remembered by someone.
vdoman (Dec 27, 2006 8:12:48 PM)
Barry the Springs Hill Marriott has complementary shutter to Airport and the Room is $209 instead $350
suziern (Dec 27, 2006 8:12:59 PM)
I am new. I am Suzette. I have a 12 year old son with MMD. CTG repeats of 681. Nice to meet you.
bette (Dec 27, 2006 8:13:02 PM)
All who know you remember you fondly.
barryc (Dec 27, 2006 8:13:17 PM)
suziern, we are off to Portland, Oregon in mid may... then on to LA for a MDA gig on Sat, and then home on Sunday
marciamellows (Dec 27, 2006 8:13:23 PM)
I remember you!!!!!!
vdoman (Dec 27, 2006 8:13:27 PM)
We love you Jerisy
barryc (Dec 27, 2006 8:13:37 PM)
GO GO Jerisy
suziern (Dec 27, 2006 8:14:01 PM)
I am taking BillyDean to a neat camp called Victory Junction Nascar camp in one of the Carolina's in April. We are going for a family weekend. I get to stay too for 3 days.
vdoman (Dec 27, 2006 8:14:04 PM)
Hi Silent Ray
bette (Dec 27, 2006 8:14:14 PM)
Barry, I hope we can manage to still connect wtih you in May.
suziern (Dec 27, 2006 8:14:20 PM)
Adam Petty memorial camp I think for special kids
marciamellows (Dec 27, 2006 8:14:27 PM)
vdo, when are you going to Florida? Are you going to be able to use Barry's old van? Barry, did you get your new vans yet?
jerisy (Dec 27, 2006 8:14:33 PM)
Bette, you are so sweet. and vdoman and Barry and all the old gang. Wednesday was notgood for awhile but I think I am back.
suziern (Dec 27, 2006 8:14:35 PM)
anyway, Neuromuscular week is that week in April.
marciamellows (Dec 27, 2006 8:15:28 PM)
So jerisy, how come I am not so sweet also?
suziern (Dec 27, 2006 8:15:55 PM)
Hey, last week I was trying to find out....and kept getting kicked off.....
vdoman (Dec 27, 2006 8:16:14 PM)
We are going March 20 so Kev can go to a couple of Spring Training Baseball Games, spend time with the Cohens and Disney World
bette (Dec 27, 2006 8:16:26 PM)
Last week just seemed to be your week.
barryc (Dec 27, 2006 8:16:34 PM)
marcia... terry just got his new Toyota Sienna Van, accessble and ready to go... it is cranberry red, and has every gizmo known to man... even has an electrical out or two to charge his scooter.
marciamellows (Dec 27, 2006 8:16:42 PM)
suziern, what were you trying to find out last week?
marciamellows (Dec 27, 2006 8:17:08 PM)
Barry, when will Julie get hers and what color will it be?
jerisy (Dec 27, 2006 8:17:09 PM)
Marcia.... I did not forget you. You are unforgetable. You just did not let me finish that message to you personally.
vdoman (Dec 27, 2006 8:17:12 PM)
Barry are Terrys friends still jealous
elliebedelia (Dec 27, 2006 8:17:24 PM)
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barryc (Dec 27, 2006 8:17:24 PM)
bette,,, I do hope julie, terry, and me can see you in LA land... if not at the conference, maybe the eve before...
suziern (Dec 27, 2006 8:17:28 PM)
BillyDean's teacher said that having him write a lot of sentences will help strengthen his hands. Have you heard of that Corey? Handwriting seems to aggravate it is all we have found. He can barely write his name and maybe one sentence and that takes quite a while. She said we need to get him to write a lot and that will help. I have searched and searched and can't find anything that says that. Does anyone know?
elliebedelia (Dec 27, 2006 8:18:13 PM)
good evening everyone
bette (Dec 27, 2006 8:18:23 PM)
Barry, let's make it a date.
barryc (Dec 27, 2006 8:18:26 PM)
hi ms nh... snowing up there?
barryc (Dec 27, 2006 8:18:38 PM)
your own, ms. bette.
barryc (Dec 27, 2006 8:18:47 PM)
your on, ms. bette
bette (Dec 27, 2006 8:18:51 PM)
Hi ellie. glad youv'e come tonight.
elliebedelia (Dec 27, 2006 8:18:56 PM)
no no snow its 22 degrees and has been raining
marciamellows (Dec 27, 2006 8:19:07 PM)
suziern, jerisy was a special ed teach for many, many years. She may be able to answer that question. Any thoughts jerisy?
bette (Dec 27, 2006 8:19:14 PM)
Barry, you havae my phone no.?
barryc (Dec 27, 2006 8:19:39 PM)
bette... I don't think I do... could you email me the tel no?
bette (Dec 27, 2006 8:20:01 PM)
Ellie, I though when it was that cold rain automatically turned into snow.
elliebedelia (Dec 27, 2006 8:20:15 PM)
suzi I don`t know about handwritting but I have been told to exercise as much as I can but not to the point of exhaution
marciamellows (Dec 27, 2006 8:20:17 PM)
suziern, jerisy was at the conference in September. Maybe you met her there.
bette (Dec 27, 2006 8:20:18 PM)
Barry, the no is 818 980-4315.
barryc (Dec 27, 2006 8:20:25 PM)
dress warm ellie.. sounds so cold to me that I would stay by the heater or fireplace all day.
vdoman (Dec 27, 2006 8:20:32 PM)
Suzi I never heard of that the teacher better do some research on MMD. Kev has always had problem with writing even today he prints because it was easier for him than curser. Suzy writing has gotten bad as her disease progresses
suziern (Dec 27, 2006 8:20:53 PM)
Oh great!! Well I have been trying to find something that supports that, but cannot find anything. His hands always start to cramp and hurt with much more than one sentence and he cannot release his pencil, then his hand hurts for some time. What I have found at home that "limiting" his handwriting helps, but the teacher said we need to "work out" his hands constantly.
suziern (Dec 27, 2006 8:21:06 PM)
I am not sure what to advocate for him now.
elliebedelia (Dec 27, 2006 8:21:08 PM)
no bette the bad thing is that is turns to ice and its very dangerous. It has to be warmer to snow like in the 30`s
barryc (Dec 27, 2006 8:21:15 PM)
bette... I don't have a pen handy... will email you and ask for no after the chat...
barryc (Dec 27, 2006 8:21:34 PM)
is that "black ice" ellie?
bette (Dec 27, 2006 8:21:53 PM)
Thanks for the education Ellie.
bette (Dec 27, 2006 8:22:24 PM)
Suzette, my handwriting has also become worse as the disease progresses.
elliebedelia (Dec 27, 2006 8:22:40 PM)
yes black ice and we have been having that the past week I have been staying right home
jerisy (Dec 27, 2006 8:22:40 PM)
Suziern. I have been a teacher of children with disabilities for 35 years. There are other ways to strengthen Billy Deans muscles and fine motor skills is to squeeze a rubber ball, catch a soft toss ball, adapt tools to fit immediate needs, utensils, toothbrush, Send for a catalogue for the disabled and see what specialty stores are offering. If it it frustrating he will fight the process. If he must write, Adapt a thick crayon or pencil to grasp easily. Good luck.
suziern (Dec 27, 2006 8:22:43 PM)
Well, his MMD docs wanted his handwriting limited. Maybe I will ask her to print me her article/abstract supporting that so I can read over it.
suziern (Dec 27, 2006 8:23:35 PM)
Thank you Jerisy. He already uses special utensils and a fat pencil.
barryc (Dec 27, 2006 8:23:41 PM)
suziern... terry struggled with his handwriting all thorugh school... he prefers to print than write long hand...he would practice with his LD coach, along with more "fun" things to do... like drawing and coloring...all good for hand and finger strength and dexterity.
suziern (Dec 27, 2006 8:23:42 PM)
I will take any tips I can get.
elliebedelia (Dec 27, 2006 8:23:49 PM)
ssuzi do you know the number of repeats Billy Dean has or was he tested that way?
suziern (Dec 27, 2006 8:24:08 PM)
Yes, he had DNA blood testing, 681 repeats
marciamellows (Dec 27, 2006 8:24:25 PM)
I asked earlier. Does any one make any New Year's resolutions? I don't because I never keep them anyway.
suziern (Dec 27, 2006 8:24:37 PM)
So has anyone heard that writing papers or sentences "helps" MMD?
bette (Dec 27, 2006 8:24:44 PM)
I'm with you Marcia.
vdoman (Dec 27, 2006 8:24:49 PM)
Billy Dean Is half of Kevin and Suzi 1333 and 1200 respectively
suziern (Dec 27, 2006 8:24:54 PM)
I will be right back.
bette (Dec 27, 2006 8:25:01 PM)
I've never heard anything like that.
jerisy (Dec 27, 2006 8:25:15 PM)
Billy 's teacher needs to lighten up and be flexible. She means well.
barryc (Dec 27, 2006 8:25:35 PM)
corey... you might want to share that again, when suziern comes back on the chat.
elliebedelia (Dec 27, 2006 8:25:37 PM)
Supprisinglt my 2 nieces were just tested and one is 650 and the other is 750 and they are both 28 yrs and 35 yrs and they show no affects from it yet. I can`t understand that at all
elliebedelia (Dec 27, 2006 8:26:19 PM)
they both hold full time jobs on their feet all day
marciamellows (Dec 27, 2006 8:26:24 PM)
The severity of MMD does not necessarily match the number of repeats.
elliebedelia (Dec 27, 2006 8:27:08 PM)
thanks mm because i have 236 repeats and i can`t hold a full time job and i am on full dissability
bette (Dec 27, 2006 8:27:23 PM)
I don't know what my repeats are but I didn't have any real problems until my forties
marciamellows (Dec 27, 2006 8:27:28 PM)
ellie, when is your daughter-in-law due? Is her pregnancy going well? Any testing?
vdoman (Dec 27, 2006 8:27:41 PM)
That is true MM but it would be interesting to see if repeats change as disease progresses
jerisy (Dec 27, 2006 8:27:42 PM)
Suziern.... does Billy have an occupationa; or physical therapist. What state do you live in?
barryc (Dec 27, 2006 8:27:59 PM)
Suziern lives in Indiana
marciamellows (Dec 27, 2006 8:29:23 PM)
I got a beautiful holiday card with a picture of baby Kayla, Lisa and Jeff. Kayla is the one who never ceases to amaze me. She has the highest number of repeats that I have ever heard of and yet is able to do so much.
suziern (Dec 27, 2006 8:29:24 PM)
I am back
suziern (Dec 27, 2006 8:29:38 PM)
Yes I am in Indiana
elliebedelia (Dec 27, 2006 8:29:43 PM)
yes mm its so exciting Jen is carrying twin boys and she is on bedrest. She is due late March but is critical to get to 32 weeks which is the 2nd week of Feb, She is very heavy. I will go to Ct where they live to help out. Her hips are in awful pain all the time. Can be on her feet 15 minutes at a time
bette (Dec 27, 2006 8:30:17 PM)
Went to v isit my mom-in-law on Monday. She was in bed in her usual funk but they had a sing a long Christmas Party in the actiity room. I left my mom with Mark and her Sister and I went to the party. I really enjoyed that. They are having anoter one on Monday and I told her we would come see her earlier so I could go to the party without feeling guilty.
vdoman (Dec 27, 2006 8:30:31 PM)
Suzi after you left I said that Kev and Suzy had repeats of 1333 and 1200 twice as much as Billy Dean
suziern (Dec 27, 2006 8:30:34 PM)
He got a PT and OT evaluation. The OT wanted him to lean a computer keyboard that he takes to school. The school also evaulated him and said he did not need any services.
suziern (Dec 27, 2006 8:30:39 PM)
It has been confusing.
jerisy (Dec 27, 2006 8:31:04 PM)
Hey ellie, Congratulations.
marciamellows (Dec 27, 2006 8:32:04 PM)
Jeff is getting his lift chair delivered tomorrow. Can't wait!
barryc (Dec 27, 2006 8:32:17 PM)
if billydean could learn the computer keyboard, it would be a skill he could use for writing and much more.
elliebedelia (Dec 27, 2006 8:32:26 PM)
that will be a great help mm my dad had one
jerisy (Dec 27, 2006 8:32:34 PM)
Suziern, If you disagree withe school you can engage the services of an advocate. Dont sign any papers of the IEP if you disagree.
suziern (Dec 27, 2006 8:33:20 PM)
Anyway, he has an IEP coming up in January and if he should not be forced to write papers I wanted to make sure and advocate for him on that. I am not sure if that will help him or make it worse. He crys at home when he has to write more than a sentence and it takes forever. His papers are always wet with tears. Before I knew he had MMD, I thought it didn't make any sense. The doctors told me he would outgrow his learning disability and that he was fine. So I would make him try to get through all that work every night, but he just couldn't do most of it. I couldn't understand why. They told me for 5 years that he was going to be back on track every year, but I could never get him out of special ed.
vdoman (Dec 27, 2006 8:33:33 PM)
You can also demand another IEP at anytime with your advocates
elliebedelia (Dec 27, 2006 8:34:50 PM)
good night everyone my eyes are tired and its 9:40 pm so I need to sign off but everyone have a good week
bette (Dec 27, 2006 8:35:03 PM)
How do you get an advocate and are there different types for different problems?
elliebedelia (Dec 27, 2006 8:35:10 PM)
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suziern (Dec 27, 2006 8:35:11 PM)
Well if the handwriting does "work out" and help the hands, then I want him to do it, tears and all. If it is of no use though and if if really hurts his hands, like he says, then I want to make sure he doesn't have to do it.
jerisy (Dec 27, 2006 8:35:42 PM)
suziern, the practice of writing obviously is NOT working. The school needs to come up with another plan... THE Computer.
bette (Dec 27, 2006 8:36:05 PM)
I agaaree with Jerisey
jerisy (Dec 27, 2006 8:36:25 PM)
If you need more support, Contact a legal advocate.
suziern (Dec 27, 2006 8:36:31 PM)
Well I will advocate for the computer then. I think it does hurt his hands like he says. They are real tears after one sentence that takes sooo long for him to write with many breaks.
vdoman (Dec 27, 2006 8:36:39 PM)
We use to go to IEP with a doctor, advocate, family members and printed material. We had a the largest IEP group they ever saw
marciamellows (Dec 27, 2006 8:37:02 PM)
How do you get an advocate?
barryc (Dec 27, 2006 8:37:24 PM)
suziern... if Billydean lacks finger and hand stength or dexterity due to MMD, the school needs to make learnng accomodations... first things first.. . find out if he has limitations that make it much too difficult for him to do the handwriting... then, I would look into computers and more... he is not the only student who cannot use his hands to write.
suziern (Dec 27, 2006 8:37:34 PM)
I will call Jodi from my local MDA and see what she says, I know they can go with me to his next IEP.
jerisy (Dec 27, 2006 8:37:35 PM)
Suz... vdoman is right. Go with as amny back ups as you can.
vdoman (Dec 27, 2006 8:37:35 PM)
The state supplies them thru regional center
vdoman (Dec 27, 2006 8:38:32 PM)
CVRCC
marciamellows (Dec 27, 2006 8:38:44 PM)
CVRCC??????
barryc (Dec 27, 2006 8:39:00 PM)
you know marcai.. las vegas code...
vdoman (Dec 27, 2006 8:39:03 PM)
Central Valley Regional Center
suziern (Dec 27, 2006 8:39:32 PM)
Well Barry, I knew he always knew his spelling words each week, as he would spell them to me perfect, but then when he took his test, he would miss most of them. When you have him recite them though, he gets them all 100% correct, when he has to write them, he never gets the words finished and flunks his test. That didn't make any sense because I knew he knew the words.
jerisy (Dec 27, 2006 8:39:42 PM)
oooops. Someone at my door. Gotta go. Again Happy Hoiidays.See you in 2007
vdoman (Dec 27, 2006 8:39:48 PM)
MM did you come home for richer or for poorer
jerisy (Dec 27, 2006 8:39:51 PM)
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marciamellows (Dec 27, 2006 8:39:56 PM)
Barry, I was in Las Vegas last weekend with Jeff and 2 of my daughers. I hit 4 aces with a kicker (a 2,3 or 4) for $500 twice!
barryc (Dec 27, 2006 8:40:34 PM)
marcia... you are either wired well upstairs or just gifted...in either case, congrats on the big wins.
suziern (Dec 27, 2006 8:40:42 PM)
I confess, I used to think his dad was lazy when I was married to him, and I had thought BIllyDean was just "taking after Bill". Now I know it was the MMD all along and no one was lazy.
jerisy (Dec 27, 2006 8:40:57 PM)
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bette (Dec 27, 2006 8:41:02 PM)
Marcia, if we ever go to Vegas, you are going with us.
suziern (Dec 27, 2006 8:41:12 PM)
We have always wanted to go to Vegas
jerisy (Dec 27, 2006 8:41:15 PM)
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marciamellows (Dec 27, 2006 8:41:24 PM)
Just do not ask me how much of the $1,000 I came home with.
suziern (Dec 27, 2006 8:41:32 PM)
I am so glad we have a special ed teacher in our room now
barryc (Dec 27, 2006 8:41:52 PM)
suziern... your spelling example is a good reason to question the school further... there are programs now that will allow kids to speak into systems, that then write things out for them. WHO CARES! As long as you find a way to get the writing done.
vdoman (Dec 27, 2006 8:42:05 PM)
MM how much did you bring home
marciamellows (Dec 27, 2006 8:42:28 PM)
I take the 5th amendment.
barryc (Dec 27, 2006 8:43:00 PM)
marcia...we know you are wired well upstairs... humility won't explain this away.
marciamellows (Dec 27, 2006 8:43:03 PM)
Anyone have any special plans for New Years Eve. I, personally, am not a big fan of New Years Eve.
bette (Dec 27, 2006 8:43:06 PM)
MM, you need to give your winnings to Jeff to hold onot.
barryc (Dec 27, 2006 8:43:50 PM)
we stay home for New Years Eve and watch the ball come down... one of these days, I hope it does not come down...now that would be fun to watch!
vdoman (Dec 27, 2006 8:44:01 PM)
We never make it past 10 pm
suziern (Dec 27, 2006 8:44:32 PM)
We stay home too Barry and watch the ball drop.
bette (Dec 27, 2006 8:44:41 PM)
Mark is going to be ome for a change. We may opt for an early dinner out than waatch KCET make papkorn and if I'm really lucky light a fire. Mark doesn't get much out of cozy fires so we don't like them often but I like them.
marciamellows (Dec 27, 2006 8:44:41 PM)
vdo, are you taking Kevin to the Indian casino for his birthday? I cannot believe that he has never been carded. He looks so young.
suziern (Dec 27, 2006 8:45:01 PM)
yes Kevin looks young
suziern (Dec 27, 2006 8:45:23 PM)
and Kevin was so pleasant and nice to BillyDean and my niece and nephew at the conference
vdoman (Dec 27, 2006 8:45:40 PM)
Yes we are going to Table Mountain and he has never been carded
barryc (Dec 27, 2006 8:46:09 PM)
now why name a mountain, Table? How embarrassing.
suziern (Dec 27, 2006 8:46:11 PM)
I am a member of Lisa's site for Kayla, for Congenital MMD. She has so much information on her web page. It seems everyone is so variable with MMD.
barryc (Dec 27, 2006 8:46:45 PM)
Lisa's site is definitely one of the best.
vdoman (Dec 27, 2006 8:46:53 PM)
We are too Suzi Lisa has a lot of info
suziern (Dec 27, 2006 8:46:53 PM)
Dr. Moxley in New York told us BillyDean was Congenital onset but he Indy MD docs say he is child onset.
suziern (Dec 27, 2006 8:47:02 PM)
so I just try to get in both areas
suziern (Dec 27, 2006 8:47:28 PM)
and Lisa is so nice and approachable.
vdoman (Dec 27, 2006 8:47:48 PM)
Suzi usually to be CMMD the child has to be born from an MMD Mom
vdoman (Dec 27, 2006 8:48:09 PM)
Not in Billie Deans case
suziern (Dec 27, 2006 8:48:13 PM)
That is what I thought too, but I do not have it.
suziern (Dec 27, 2006 8:48:46 PM)
Dr. Moxley examined him and told me he is Congenital onset, even with it coming from his dad and not his mom.
vdoman (Dec 27, 2006 8:48:55 PM)
That is why the docs say he is childhood onset
barryc (Dec 27, 2006 8:50:14 PM)
I thought congenital MMD met onset at birth, irrespective of which parent carried the MMD defective gene.
suziern (Dec 27, 2006 8:50:22 PM)
He never cried until he was weeks old, has always slept with his eyes partially open and his mouth open. But other than that, no other problems from birth. We came home from the hospital in 2 days, just like with my girls. Moxley said he is congenital though.
vdoman (Dec 27, 2006 8:52:13 PM)
Everything I have read on CMMD the mother has to be the carrier and CMMD babys tend to be more affected
vdoman (Dec 27, 2006 8:53:55 PM)
Look at Kevin, Kayla as example both are CMMD and both had problems in the womb and after birth were in Neonatal for a while
marciamellows (Dec 27, 2006 8:54:02 PM)
Bette, just called me on the telephone. She just got bumped off and is having trouble getting back on. Mark is due home soon also and then they will have dinner. She wishes everyone a Happy New Year.
robyn-g (Dec 27, 2006 8:55:28 PM)
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suziern (Dec 27, 2006 8:55:33 PM)
Well I guess it doesn't really matter. I just want to be able to advocate for him best I can since he has a learning disability. He is about 1st grade level and is 12 years old.
barryc (Dec 27, 2006 8:55:37 PM)
getting bumped off is sooo easy to do... getting back on.... well, that is a trick.
bette (Dec 27, 2006 8:55:52 PM)
I went to the race track when I was twenty one and couldn't wait to be carded but I didn't get carded until I was 24.
suziern (Dec 27, 2006 8:55:52 PM)
I guess every MMD person is different and the repeats don't seem to correlate
bette (Dec 27, 2006 8:56:25 PM)
It never occured to me to minimize the enter zcreen. Once I did I got right back to the chat.
robyn-g (Dec 27, 2006 8:56:31 PM)
Hi Everyone. We got moved during the windstorm we had here. Our house we sold, finally closed today.
suziern (Dec 27, 2006 8:56:42 PM)
Hey Robyn!
suziern (Dec 27, 2006 8:56:48 PM)
Great to see you!
vdoman (Dec 27, 2006 8:56:51 PM)
MM a local man in Fresno just won a million dollars playing poker machine. He had 3 ace of diamonds
robyn-g (Dec 27, 2006 8:56:57 PM)
Hi Suziern, Jessica is 11 1/2 and on about a kindergarten/first grade level.
suziern (Dec 27, 2006 8:57:00 PM)
Wow!
suziern (Dec 27, 2006 8:57:16 PM)
Does she ever complain about handwriting?
robyn-g (Dec 27, 2006 8:57:17 PM)
What did you say Billy Dean's repeats are? Jessicas are in the 600"s
suziern (Dec 27, 2006 8:57:21 PM)
681
robyn-g (Dec 27, 2006 8:57:38 PM)
Suzie, both girls complain about there hands getting tired easily.
suziern (Dec 27, 2006 8:57:39 PM)
Robyn, does it help MMD to force kids to write? Will that help?
vdoman (Dec 27, 2006 8:57:50 PM)
Suzi Kev is 24 and developmenatally is about 12 or 13
suziern (Dec 27, 2006 8:57:55 PM)
BillyDean cries
bette (Dec 27, 2006 8:57:57 PM)
Now that I am back on, Mark is home and I have to go get dinner on the table and eat something. HAPPY NEW YEAR TO ALL. See you next week.
bette (Dec 27, 2006 8:58:00 PM)
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suziern (Dec 27, 2006 8:58:08 PM)
Bye Bette
marciamellows (Dec 27, 2006 8:58:12 PM)
vdo, I hope that you are joking. There is only 1 ace of each suit.
barryc (Dec 27, 2006 8:58:14 PM)
to make matters even more confusing, some people (ie. Julie) have MMD and no LD problems, which others (ie. Terry) have LD problems... however, LD issues are a common symtom... since MMD is a disorder with many systems affected...brain, heart, and the list goes on and on.
robyn-g (Dec 27, 2006 8:58:25 PM)
Have you heard about the Alphasmart. It is a device that allows Janelle to type her assignments and the teachers can print it out.
vdoman (Dec 27, 2006 8:58:35 PM)
It was a slot machine MM
suziern (Dec 27, 2006 8:58:41 PM)
No I have not heard of that.
suziern (Dec 27, 2006 8:58:46 PM)
Can I find that on google?
suziern (Dec 27, 2006 8:58:57 PM)
I am trying to get ready for my IEP in January.
robyn-g (Dec 27, 2006 8:59:00 PM)
Yah, Barry, Joe doesn't have any learning disabilities, but both girlsdo.
barryc (Dec 27, 2006 8:59:08 PM)
alsphsmart... how does it work, ms. robyn?
suziern (Dec 27, 2006 8:59:10 PM)
Maybe I could go ahead and get that for BillyDean
suziern (Dec 27, 2006 8:59:36 PM)
BillyDean's biological dad does not have a learning disability, but has fatigue and many other symptoms
robyn-g (Dec 27, 2006 8:59:46 PM)
You should be able to find it suzie. Actually, the school district should already know about it. They should be able to provide it for him, like they do for Janelle.
suziern (Dec 27, 2006 9:00:13 PM)
The school OT tested him and said he does not have any OT or computer needs and can write himself.
robyn-g (Dec 27, 2006 9:00:16 PM)
Jessica is not quite at a level where she could use it. She may be a little behind billydean though
barryc (Dec 27, 2006 9:00:25 PM)
I wish I had alphasmart when I was a kid... my handwriting legibility is BAD to AWFUL
suziern (Dec 27, 2006 9:01:06 PM)
Well I am going to check into that Robyn
marciamellows (Dec 27, 2006 9:01:11 PM)
barry, as a doctor your handwriting is supposed to be bad.
suziern (Dec 27, 2006 9:01:12 PM)
I will look for it online
robyn-g (Dec 27, 2006 9:01:19 PM)
Suzie, that is pretty much what they told me about Jessica, last year. However, I dont agree with them. Yes, she can write, but she does get hand cramps.
vdoman (Dec 27, 2006 9:01:33 PM)
You have to fight that Suzie do you have an Atourney who specializes in Disability. Bring him to the IEP
suziern (Dec 27, 2006 9:01:33 PM)
does she cry?
robyn-g (Dec 27, 2006 9:01:51 PM)
Suzie, we also have them modify Janelle's assigments, shorten them, etc.
suziern (Dec 27, 2006 9:01:52 PM)
I can get one, gee.
suziern (Dec 27, 2006 9:02:29 PM)
Robyn, do you live in the DC area?
robyn-g (Dec 27, 2006 9:02:52 PM)
Have they tested his IQ. The girls are several points apart. Jessica tests lower than what she performs at, though. She is considered mildly mentally retarded.
robyn-g (Dec 27, 2006 9:03:05 PM)
NO Suzie, I live in Washington State, west coast.
barryc (Dec 27, 2006 9:03:09 PM)
yeh, my handwriting was so bad that one of my biggy exams I almost failed.... seems that secretraries typed my answers and could not read my writing...soooo they just typed what they thought I said... fortunately, a prof of mine(with handwriting as poor as mine) went back and read my answers on the test... from then on, I typed ALL my exams.
suziern (Dec 27, 2006 9:03:15 PM)
Yes, I had it tested myself at Riley Hospital. It is 71.
robyn-g (Dec 27, 2006 9:03:49 PM)
Jessica's is in the 50's. Janelle is around 90.
suziern (Dec 27, 2006 9:04:26 PM)
I wonder if BillyDean is mildly retarded. Wonder how they differentiate between a learning disability and retarded. Do you know?
robyn-g (Dec 27, 2006 9:04:35 PM)
Suzie, see if you can bring in an advocate for him to the IEP
suziern (Dec 27, 2006 9:04:44 PM)
Yes I will.
vdoman (Dec 27, 2006 9:05:03 PM)
Suzi the more people you bring advocating Billies rights the more you will itimidate the school position and their people. You have to fight for your rights. They want to spend as little as they can on Billie
robyn-g (Dec 27, 2006 9:05:07 PM)
I try to journal some so that I can bring in the info to the IEP. I always take in pen and paper and take notes, as well.
suziern (Dec 27, 2006 9:05:32 PM)
Goodness.
robyn-g (Dec 27, 2006 9:05:57 PM)
Got to go. I have company. I'll try to be on next week. I miss you all. Take care. Go Suziern!!!
barryc (Dec 27, 2006 9:06:01 PM)
labels are not going to help very much suziern... IQ points determine when mild retardation is present... but more important is the kinds of deficits and extent of these deficits .. . all learning diagnoises get much more specific than overall IQ.
suziern (Dec 27, 2006 9:06:03 PM)
I will take several people next time, in January'
robyn-g (Dec 27, 2006 9:06:06 PM)
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suziern (Dec 27, 2006 9:06:39 PM)
Yes Barry, the school principle calls BillyDean a label
suziern (Dec 27, 2006 9:07:12 PM)
I didn't kwow what that meant at first
suziern (Dec 27, 2006 9:07:22 PM)
My girls always did fine at school
suziern (Dec 27, 2006 9:08:15 PM)
Well, I know BillyDean is in there and there is so much he can do, just doesn't learn or test the same way my girls did.
barryc (Dec 27, 2006 9:08:28 PM)
I hope the prinicipal acts like a leader... getting his teachers to recognize the value of identifying strengths as well as learning deficits... especially important for LD kids... everyone has natural strengths... see Terry's book.
suziern (Dec 27, 2006 9:08:57 PM)
Yes, BillyDean has many. He is the leader in our home on many things.
barryc (Dec 27, 2006 9:09:38 PM)
terry has his IQ deficits, but his social awareness test scores are substantially higher than the average adult...well into superior range.
suziern (Dec 27, 2006 9:10:56 PM)
I am not sure how BillyDean tests there. I think he only shuts down sometimes because he cannot do things. He can fix anything around here and has a lot of talents we all don't have. Sometimes I wonder about his learning disability as he can do so many things, just can't get them on paper. Well, I am signing out for now. So glad I stayed online the entire hour. I will talk to you all next week. Thanks for your help
suziern (Dec 27, 2006 9:11:20 PM)
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barryc (Dec 27, 2006 9:11:40 PM)
see you guys next year... May it be the year of the CURE
barryc (Dec 27, 2006 9:11:45 PM)
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marciamellows (Dec 27, 2006 9:12:36 PM)
Happy New Year paray and vdo. Ditto to what Barry said, may it be the year of the CURE. See you next week (year).
marciamellows (Dec 27, 2006 9:12:51 PM)
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vdoman (Dec 27, 2006 9:12:57 PM)
Bye
vdoman (Dec 27, 2006 9:13:00 PM)
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