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From: Sotosyndrome@yahoogroups.com [mailto:Sotosyndrome@yahoogroups.com]
Sent: Tue 10/25/2005 6:14 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Digest Number 2887
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There are 20 messages in this issue.
Topics in this digest:
1. Re: (Jennifer) Need Advice, more advice
From: "abjkv99" <abjkv99@...>
2. Re: Educating a Sotos Child
From: "abjkv99" <abjkv99@...>
3. medications???
From: "Wayne Kreider" <wkreider@...>
4. Re: To Robin, and all those others who care so DEEPLY, bad day..
From: "abjkv99" <abjkv99@...>
5. Re: To Robin, and all those others who care so DEEPLY, bad day..
From: "abjkv99" <abjkv99@...>
6. Re: report card
From: "abjkv99" <abjkv99@...>
7. Re: Re: report card
From: Deborah Andreasen <boss4161@...>
8. RE: Educating a Sotos Child - To Trish
From: "Pam" <pamlepro@...>
9. RE: To Donna - seizures/second opinion
From: "Pam" <pamlepro@...>
10. RE: To Donna - seizures/second opinion
From: "Donna Fernandez" <donnaleef@...>
11. Claudia
From: "Kellie Siers" <rottymama@...>
12. Re: Answering Claudia & looking for other answers
From: "hubby4kids" <hubby4kids@...>
13. Re: Claudia
From: "hubby4kids" <hubby4kids@...>
14. Re: medications???
From: Robin Cowley <cowley3b@...>
15. RE: Re: Answering Claudia & looking for other answers
From: "Donna Fernandez" <donnaleef@...>
16. Re: medications???
From: Robin Teeple <poor_robbo@...>
17. Re: report card
From: "abjkv99" <abjkv99@...>
18. Re: Re: report card
From: Deborah Andreasen <boss4161@...>
19. Re: Re: Claudia
From: "Kellie Siers" <rottymama@...>
20. Re: To Robin, and all those others who care =Deb
From: Drivingmissmary@...
________________________________________________________________________
________________________________________________________________________
Message: 1
Date: Mon, 24 Oct 2005 13:00:08 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: (Jennifer) Need Advice, more advice
--I am finding Florida to be very bad too.....my daughter applied for
a jon at at grocery store ( at 15 you can work 3 hours a day ) these
folks can't get her paperwork right, spell her name right and it is
taken over a month to even get it together, it is sad and I know why
so many people just don't work now. Our school educators aren't very
bright either ( it's sad) they only answer black and white , what
ever they have been trained to say that is in a handbook, they just
don't know how to think or answer a real question, it is very
frustrating sometimes.
Arlene
- In Sotosyndrome@yahoogroups.com, Deborah Andreasen <boss4161@y...>
wrote:
>
> I thought we only had people that couldn't answer
> questions in Alabama..ha.. no one ever knows anything
> and no one can answer. I don't think they train them
> they just put them there to answer the phone. Our
> public school system is the worst, no one knows who to
> ask or the answer to any question and they usually put
> you on hold and then loose you in the land of hold
> on..
> good luck..
> Deborah
>
> --- Tracey T Box <traceyb@t...> wrote:
>
> > I DON'T KNOW IF IT'S JUST IN MISSISSIPPI, BUT THE
> > STATE SEEMS TO PUT PEOPLE
> > IN THESE JOBS THAT CAN'T ANSWER THESE QUESTIONS. THE
> > PEOPLE THEY PUT TO
> > ANSWER THE PHONE ARE NO HELP. JUST A JOB AND IT
> > TAKES A WHILE FOR THEM TO
> > FIND OUT AND ANSWER AND GET BACK TO YOU.
> > DO THEY NOT EDUCATE THESE PEOPLE FIRST?????
> > I WOULDN'T KNOW WHERE TO BEGIN TO ASK. I ASK ONE
> > LADY (NURSE) AND SHE HAD
> > NO IDEA. I ASK THE LADY AT THE FRONT DESK AND SHE
> > HAD NO IDEA. GEESH,
> > WHAT'S A PERSON TO DO?????
> >
> > ----- Original Message -----
> > From: "abjkv99" <abjkv99@y...>
> > To: <Sotosyndrome@yahoogroups.com>
> > Sent: Saturday, October 22, 2005 12:59 PM
> > Subject: [Sotosyndrome] Re: (Jennifer) Need Advice,
> > more advice
> >
> >
> > > ---
> > > Can you write a paycheck to yourself, is this what
> > you do if it is
> > > your own farming business. Have your husband write
> > his income, then
> > > write no work for 4 months due to cops not matured
> > at this time. I am
> > > not sure, I would call and ask them also though
> > they probably would
> > > want to see you income tax statement, they are
> > usually pretty strict
> > > on these things.
> > > Arlene
> > >
> > >
> > >
> > > In Sotosyndrome@yahoogroups.com, "Jennifer Heater"
> > <jaheater3@c...>
> > > wrote:
> > >>
> > >> I'm not sure how that is done with farming or
> > anything. I'm a bit
> > > baffled with that. I wonder if you just explain
> > on a separate piece
> > > of paper from the application that you don't have
> > a proof of income.
> > > On the other hand, they usually (in Mi anyway) go
> > from gross income..
> > > not net and may look at your 2004 tax papers.
> > >> ----- Original Message -----
> > >> From: Tracey T Box
> > >> To: Sotosyndrome@yahoogroups.com
> > >> Sent: Saturday, October 22, 2005 12:42 PM
> > >> Subject: [Sotosyndrome] (Jennifer) Need Advice,
> > more advice
> > >>
> > >>
> > >> That is what we have used in the past to get
> > her Depakote
> > > (Crippled Children's). That is the only thing we
> > have ever received
> > > free from the state of Mississippi. But as of
> > this year, time to
> > > renew, they have changed and want to see proof of
> > income. The only
> > > thing, we have had NO income for the last 4 months
> > due to farming,
> > > waiting on the crops to be harvested and bills
> > paid before we get any
> > > of it. I have nothing showing proof of income
> > except for last years
> > > income tax papers. That won't work for us. Any
> > other ideas here?
> > > How can you show proof of income without showing
> > income tax
> > > papers???? One years shows a good year, one year
> > shows not so good.
> > > It changes from year to year. Help!
> > >> ----- Original Message -----
> > >> From: Jennifer Heater
> > >> To: Sotosyndrome@yahoogroups.com
> > >> Sent: Saturday, October 22, 2005 8:39 AM
> > >> Subject: [Norton AntiSpam] Re: [Sotosyndrome]
> > Need Advice
> > >>
> > >>
> > >> Also, there may be a something in your state
> > called
> > >> Crippled Children... or Childrens Special
> > Health Care.
> > >>
> > >> That is what its called here in Michigan...
> > It would be through
> > > your Department of Community Health
> > >>
> > >> Jenny
> > >> ----- Original Message -----
> > >> From: Tracey T Box
> > >> To: Sotosyndrome@yahoogroups.com
> > >> Sent: Saturday, October 22, 2005 2:48 AM
> > >> Subject: Re: [Sotosyndrome] Need Advice
> > >>
> > >>
> > >> Disability, Medicaid. She has to be proven
> > disabled. She
> > > was denied on insurance, so without any right now,
> > and I am trying to
> > > get the Medicaid for the disabled child living in
> > the home. Has
> > > nothing to do with parents income or assets, only
> > the disability of
> > > the child. Can you help here? I need it worded
> > well for a disabled
> > > child.
> > >> Thanks so much!
> > >> Tracey
> > >> ----- Original Message -----
> > >> From: Liliane
> > >> To: Sotosyndrome@yahoogroups.com
> > >> Sent: Saturday, October 22, 2005 12:42 AM
> > >> Subject: RE: [Sotosyndrome] Need Advice
> > >>
> > >>
> > >> Tracey - what do you need the info for?
> > I have collected
> > > some very well worded statements from this chat
> > site and am keeping
> > > these e-mails and their wording in a separate
> > file. Would be happy to
> > > e-mail to you as attachments. Do you need it for
> > insurance? For
> > > SSI ? Let me know. I will dig up the wording that
> > "matches" what you
> > > are trying to achieve!
> > >> Hugs, Liliane
> > >> -----Original Message-----
> > >> From: Sotosyndrome@yahoogroups.com
> > > [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of
> > Tracey T Box
> > >> Sent: Friday, October 21, 2005 9:56 PM
> > >> To: Sotosyndrome@yahoogroups.com
> > >> Subject: [Sotosyndrome] Need Advice
> > >>
> > >>
> > >> How would you describe Sotos Syndrome
> > at it's worse?
> > > Liliane has mentioned things we do not need to
> > mention when filling
> > > out papers for disability. What would be a good
> > description?
> > >> Thanks!
> > >>
> > >>
> > >>
> >
> --------------------------------------------------------------------
> > > --
> > >>
> > >>
> > >> No virus found in this outgoing
> > message.
> > >> Checked by AVG Anti-Virus.
> > >> Version: 7.0.344 / Virus Database:
> > 267.12.4/146 - Release
> > > Date: 10/21/2005
> > >>
> > >>
> > >>
> > >> Please check the Sotos Syndrome Support
> > Association Home Page at
> > > http:/www.well.com/user/sssa/
> > >>
> > >>
> > >>
> > >> SPONSORED LINKS Health and wellness Health
> > wellness product
> > > Health and wellness program
> > >> Diet fitness health nutrition wellness
> > Business health
> > > wellness Womens health and wellness
> > >>
> > >>
> > >>
> >
> --------------------------------------------------------------------
> > > ----------
> > >> YAHOO! GROUPS LINKS
> > >>
> > >> a.. Visit your group "Sotosyndrome" on the
> > web.
> > >>
> > >> b.. To unsubscribe from this group, send an
> > email to:
> > >> Sotosyndrome-unsubscribe@yahoogroups.com
> > >>
> > >> c.. Your use of Yahoo! Groups is subject to
> > the Yahoo! Terms
> > > of Service.
> > >>
> > >>
> > >>
> >
> --------------------------------------------------------------------
> >
> === message truncated ===
>
>
>
>
>
> __________________________________
> Yahoo! Mail - PC Magazine Editors' Choice 2005
> http://mail.yahoo.com
>
________________________________________________________________________
________________________________________________________________________
Message: 2
Date: Mon, 24 Oct 2005 13:03:19 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: Educating a Sotos Child
---Are there private schools that would take him , would he qualify
for funding if public school doesn't offer the education? Also ask
the doctor what he/she thinks. Not sure what laws are like in the UK.
Arlene
In Sotosyndrome@yahoogroups.com, "stardonna13" <stardonna13@y...>
wrote:
>
>
> We live in the UK, and have three boys , 10, 7, and 3, the 7 year
old
> has Sotos, we are currently going through a living nightmare,
getting
> the Local Education Authority, to understand the condition, worst
> still although he has a statement of special educational needs,
> stating that the LEA (Local Education Authority)is suppose to
provide
> an education, he is currently receiving none.We have been educating
> him at home working on his behaviour and communication with
ABA/PECS
> therapists, and the LEA have refuse to pay for this.
>
> There are no skills in the local schools and the local special
> school, as no idea what to do with him, the head actually told us
> that quote
> " he's too large to go in with the year 2's ,and too high
> functioning, and it would be wrong to put him in with the year 4's
as
> he would be treated like a older child ",
>
> We have also been offered main stream school but without skilled
> people that would be a joke, it seems that we are dammed no matter
> what we do, and our child is the big loser in all this. It was
> sugguested to us that he should be placed in a school for severely
> ASD children, however I don't feel he belongs there, although our
> child clearly shares some of the ASD traits, he is very socialable
> and does communicate using unclear limited speech, PECS or through
> behaviour -sometimes unacceptable behaviour, and if he is placed
with
> a group of children who are not communicating, his skills will
> obviously disappear.
>
> We are getting rather desparate now, we feel he has out grown the
> house and what we can teach him there on his own, he needs more
> interaction and exposure to the real world- but in our situation
what
> is the answer, which way do we go with his education there is no
more
> time to waste.
>
> Has anybody got any ideas?
>
________________________________________________________________________
________________________________________________________________________
Message: 3
Date: Mon, 24 Oct 2005 09:09:18 -0400
From: "Wayne Kreider" <wkreider@...>
Subject: medications???
Hello everyone. I had written in about a month ago in regards to our son David (Sotos-like) who is 10 1/2 years old. He started out the school year okay, but soon began to show more aggression towards his classmates. He started biting without anyone doing anything to him first. He also started to try to exit the classroom more, and leave the playground more often than usual. He is non-verbal, so we really don't know what the reasons are for the big changes. He has always tried to pinch or even bite, but it has only been when he is totally frustrated or doesn't want to do something that he is supposed to do. He has been on 4 mg. of Risperdal 2 times/day and also Xanax for anxiety (but only when needed.) Our one doctor wanted to try him on Buspar, but that didn't seem to help much. It actually caused him to not sleep very well. The psychiatrist that we saw two weeks ago switched him to 5mg. Risperdal in the a.m. and 4 mg. in the p.m., and also 0.5mg. to 1.0 mg. of At!
ivan (also for anxiety.) When we have tried him on the higher dose of Ativan, he exhibits some really weird behavior. He is non-stop; just moving from one thing to the next. He isn't able to sit for very long. He has always put a lot of things in his mouth, but it seems to be a lot worse when he is on the higher Ativan dose. Yesterday, I think I was only able to leave him alone for about 2 minutes at a time. Each time I would look at him, he would have something else in his mouth. If he couldn't find anything to chew on, we would find him picking apart his Pull-Up and trying to eat that. It was a very exhausting afternoon. This week we are going to try the lower dose again (we did that two weeks ago and it was just "okay.") The psychiatrist had mentioned possibly trying Abilify (spelling?) Has anyone used this before, and if so what results did you see? I am planning on calling the psych. tomorrow to tell him what we are seeing, and hopefully we can figure this!
all out. I am getting so tired of all the meds. changes. Any sugge
stions would be greatly appreciated!!!
Thanks,
Carla
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 4
Date: Mon, 24 Oct 2005 13:10:19 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: To Robin, and all those others who care so DEEPLY, bad day..
---
Thanks Mary, we have a day off of school today. We just missed the
worst of the hurricane, It's not too bad here, lots of rain and wind
gust, Tampa Bay is a little north of Naples we are right on the
pinellas county coast, 5-10 miles to the ocean and 1-2 miles to tampa
bay, this is where we worry about the storm surge and flooding so
when they turn we celebrate as we are in severe flood zone.We had a
busy weekend as we were told to prepare in case it turned, stocked
up, did laundry and all the things you need to do if you lose power.
The kids are sleeping in as it is very wet out.
Arlene
In Sotosyndrome@yahoogroups.com, Drivingmissmary@a... wrote:
>
> Hello EVERYONE,
> Please forgive me for not replying to your posts. I read them all
and its
> like having a whole new family. I always read before going to bed,
it gives me a
> chance to think about everyone, and say a prayer before closing my
eyes for
> the night. Its funny, I know more about some of your families then
I know about
> my own!
>
> When Alex turned 3, the rush was on to get him tranfered over into
school.
> the last week,was a mad rush of test, and more test. Even though he
was in an
> early intervention program, I'm sure you guys know first hand, the
school does
> all their own testing again. I was so excited for Alex, about his
going to
> school. I never gave the testing very much thought. I got the
assesments back
> friday at his school IEP meeting. ( Globel Delays 11 MONTHS )...I
DID"NT EVEN SEE
> THAT COMMING!... I knew he was'nt doing as much as most on here,
but, 11
> months? They're saying NOT even a year? I dont think I've cried so
hard in the
> three years Alex has been born, as I did that day! My Gosh, if we
have to live
> THREE years, to EVERY ONE YEAR, we better hurry up, cause we gotta
hell of a
> long ways to go, and I'm TOO DAMN OLD!!...jeezzz, I'm gonna be
heading for my
> 70's before he's 5,.. he's just gonna be comming outta diapers,
when, I'm going
> in!..( 11 months).....thats why he was unable to do alot of things,
on the flip
> side, he's right on target fo 11 MONTHS!!!... I dont know what I
was thinking
> when I thought I could do this,...I dont even have a HUSBAND, and
at the rate
> I'm going, I ain't gonna be getting one either!.....I hope to be
able to read
> thru some of these post tomorrow, until then I hope everyone else
is doing
> ok, I'm alittle worried about arlene, praying for those in wilmas
path.
> Mary
> Alex 3 Sotos, And proving them wrong
>
________________________________________________________________________
________________________________________________________________________
Message: 5
Date: Mon, 24 Oct 2005 13:14:36 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: To Robin, and all those others who care so DEEPLY, bad day..
---Don't focus so much on the testing , he will get better, it also
means they will have to give more support to help him catch up in the
areas he is behind, testing at a young age is always difficult. We
never felt kristophers abilities were based on test results as kids
with disabilities don't always test well or test off if they don't
feel like focusing well at the time. It will help with support
though. Focus on what Alex is doing and how he is improving he has
been through alot in 3 years, look how far he has come!! I know you
are proud of what he can do !! the rest will come when he is ready
for the bigger challenges, little steps at a time.
Arlene
In Sotosyndrome@yahoogroups.com, Drivingmissmary@a... wrote:
>
> Hello EVERYONE,
> Please forgive me for not replying to your posts. I read them all
and its
> like having a whole new family. I always read before going to bed,
it gives me a
> chance to think about everyone, and say a prayer before closing my
eyes for
> the night. Its funny, I know more about some of your families then
I know about
> my own!
>
> When Alex turned 3, the rush was on to get him tranfered over into
school.
> the last week,was a mad rush of test, and more test. Even though he
was in an
> early intervention program, I'm sure you guys know first hand, the
school does
> all their own testing again. I was so excited for Alex, about his
going to
> school. I never gave the testing very much thought. I got the
assesments back
> friday at his school IEP meeting. ( Globel Delays 11 MONTHS )...I
DID"NT EVEN SEE
> THAT COMMING!... I knew he was'nt doing as much as most on here,
but, 11
> months? They're saying NOT even a year? I dont think I've cried so
hard in the
> three years Alex has been born, as I did that day! My Gosh, if we
have to live
> THREE years, to EVERY ONE YEAR, we better hurry up, cause we gotta
hell of a
> long ways to go, and I'm TOO DAMN OLD!!...jeezzz, I'm gonna be
heading for my
> 70's before he's 5,.. he's just gonna be comming outta diapers,
when, I'm going
> in!..( 11 months).....thats why he was unable to do alot of things,
on the flip
> side, he's right on target fo 11 MONTHS!!!... I dont know what I
was thinking
> when I thought I could do this,...I dont even have a HUSBAND, and
at the rate
> I'm going, I ain't gonna be getting one either!.....I hope to be
able to read
> thru some of these post tomorrow, until then I hope everyone else
is doing
> ok, I'm alittle worried about arlene, praying for those in wilmas
path.
> Mary
> Alex 3 Sotos, And proving them wrong
>
________________________________________________________________________
________________________________________________________________________
Message: 6
Date: Mon, 24 Oct 2005 13:26:45 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: report card
---That is fantastic, especially switching schools, he is definately
taking a full course look, many seniors take electives that are more
fun in their senior year. I would be proud too!!! He is a very hard
worker handling a full course load and a job!Does he still work out
everyday too?
Arlene
In Sotosyndrome@yahoogroups.com, "boss4161" <boss4161@y...> wrote:
>
> Jamey brought home his report card Friday.... I am so proud!!!!! For
> those who don't know him, last October 2004 his school closed
> suddenly, here he was a junior in high school and his school
closed.
> We got him in another private school that was a PACE school. He
> finished the year out there and we enrolled him in another private
> school to finish out his high school years. He got his first report
> card from the new school... grades are wonderful with great comments
> from the teachers.
> English 12, B, teacher comments very well behaved, U. S. History
Good
> participatinon in class great Job, B, Statistics You are a joy to
> teach, great job B, Marine Bio, very sincere about school work puts
> forth effort, B, Cisco Networking Shows interest in subject good
sense
> of humor, B Ethics Conscientiouse student contributes much to this
> class A, And American Govt Great Job Good participation in class
A.
> He had to take American history as with the schools switching around
> some how it was left out of his classes last year, and this school
> requires it for graduation. When he finishes he will have 5 credits
> in History..ha. But the second school he went to didn't require
it.
> But anyway.... great report card and he is having a good senior
year...
> Deborah
>
________________________________________________________________________
________________________________________________________________________
Message: 7
Date: Mon, 24 Oct 2005 07:34:43 -0700 (PDT)
From: Deborah Andreasen <boss4161@...>
Subject: Re: Re: report card
He doesn't have time to work out, he leaves home at 7
AM gets out of school at 3:15 and heads straight to
work to be there for his shift at 4PM. He changes his
clothes in the truck..ha..he works until 9 PM the gym
closes at 9 so no time to work out unless he goes at 6
in the morning. Which he use to do during football
season. But he needs the extra sleep in the morning.
Plus he is juggling several girls..ha.. worked
yesterday and was suppose to meet one at the mall and
another at the fair. He didn't meet the one at the
mall but he did go to the fair with the another
one..ha. We are back to over six different girls
calling him. YEAH.... I didn't like it when it was
just one, he is to young to have one girl friend.
Ha...
He took his mothers advice..ha..
How is the weather in your part of the world???
Windy??? looks like you would be getting a lot of wind
and rain. Our winds this morning out of the north at
over 30 made it cool. I think fall has arrived this
week, we can cut off the A/C for today anyway..ha.
summer will be back next week probably. But we are
having beautiful weather. The air is crisp and clear
no rain.
Jamey took electives at the school last year, typing
etc.. he had 22 credits at the begining of this year
needed 21 to be a senior so he is ahead but he needed
the math and science, he already had his PE, health,
etc. Cisco networking is an elective but if certified
he can start out networking after high school. We
have a networking company as well, but have sort of
let it go down over the past couple of years. He can
start that back up if he wants to. But he hasn't
decided.
He has time to decide what he wants to do after high
school.
Deborah
--- abjkv99 <abjkv99@...> wrote:
> ---That is fantastic, especially switching schools,
> he is definately
> taking a full course look, many seniors take
> electives that are more
> fun in their senior year. I would be proud too!!! He
> is a very hard
> worker handling a full course load and a job!Does he
> still work out
> everyday too?
> Arlene
>
>
>
> In Sotosyndrome@yahoogroups.com, "boss4161"
> <boss4161@y...> wrote:
> >
> > Jamey brought home his report card Friday.... I am
> so proud!!!!! For
> > those who don't know him, last October 2004 his
> school closed
> > suddenly, here he was a junior in high school and
> his school
> closed.
> > We got him in another private school that was a
> PACE school. He
> > finished the year out there and we enrolled him in
> another private
> > school to finish out his high school years. He
> got his first report
> > card from the new school... grades are wonderful
> with great comments
> > from the teachers.
> > English 12, B, teacher comments very well behaved,
> U. S. History
> Good
> > participatinon in class great Job, B, Statistics
> You are a joy to
> > teach, great job B, Marine Bio, very sincere about
> school work puts
> > forth effort, B, Cisco Networking Shows interest
> in subject good
> sense
> > of humor, B Ethics Conscientiouse student
> contributes much to this
> > class A, And American Govt Great Job Good
> participation in class
> A.
> > He had to take American history as with the
> schools switching around
> > some how it was left out of his classes last year,
> and this school
> > requires it for graduation. When he finishes he
> will have 5 credits
> > in History..ha. But the second school he went to
> didn't require
> it.
> > But anyway.... great report card and he is having
> a good senior
> year...
> > Deborah
> >
>
>
>
>
>
__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com
________________________________________________________________________
________________________________________________________________________
Message: 8
Date: Mon, 24 Oct 2005 11:16:12 -0400
From: "Pam" <pamlepro@...>
Subject: RE: Educating a Sotos Child - To Trish
Dear Trish,
I cannot believe a teacher or any professional would ridicule any child
who was still in diapers/nappies.especially a child with special needs!
That teacher should not be teaching children!!!!! I do not blame you
one bit for pulling him from that school. I wish you the best of luck
with home schooling.I do agree it speaks volumes that he already relaxed
knowing he does not have to go back that type of environment!
Take care,
Pam :-)
-----Original Message-----
From: Sotosyndrome@yahoogroups.com [mailto:Sotosyndrome@yahoogroups.com]
On Behalf Of hussell
Sent: Sunday, October 23, 2005 8:18 PM
To: Sotosyndrome@yahoogroups.com
Subject: Re: [Sotosyndrome] Educating a Sotos Child
Dear Susan,
I have been quiet here lately because we have been struggling as you
describe with Nicholas' school. Nicholas is 8y.10months, Classic Sotos,
and has been attending a special school. In Australia, that means the
school specialises in educating kids with special needs. Nicholas
certainly qualifies for that, as he has a developmental age of 3-4y.o.
and is not very verbal yet. In this past year we have faced the
impossible to get Nicholas to go to school. He also started not wanting
to go on repite at all about April 2005.
He was very sick last term (our winter term here) and ended up with
chicken pox during the holidays (24 Sept.-11 October). He hates going to
the school, and we finally struck a deal week before last to allow one
of our family members to sit in the classroom with Nicholas so he would
stay at school. I did it for the first four days, but our almost 16y.o.
daughter, who has ADHD and learning difficulties, had to go last Friday.
Because she is disabled herself, they obviously didn't think she would
notice their "cold" treatment of Nicholas in class (not from the kids,
but fom the teacher and her aide), which was never there while I was in
the class! The teacher also ridiculed him in front of the class for
wearing a nappy (diaper).
There are lots of other reasons, mainly to do with the Principal who
started at the beginning of this year (when Nicholas started to really
refuse to go!!!???), but we made the decision on Saturday that Nicholas
would not be returning to the school. When we told Nicholas we will do
home schooling with him from Monday, he visibly relaxed, he insisted on
going on repsite to Ten Pin Bowling on Sunday and has been the best
behaved ever on respite. He is still demanding and difficult, but far
less than when he was under the "threat" of having to return to the
school. That tells us heaps, I think.
Reading your post about your problems with Hunter's education have
really put the icing on the cake for me, though. Thank you, thank you, a
million times thank you - for what you were brave enough to do, for what
you have done for your son, for sharing it with us. I am crying with joy
and gratitude to you for sending this today! We really needed it. God
bless you and your family, Susan.
trish (Australia)
----- Original Message -----
From: scooperjackson@...
To: Sotosyndrome@yahoogroups.com
Sent: Monday, October 24, 2005 1:10 AM
Subject: Re: [Sotosyndrome] Educating a Sotos Child
Hi, I live in Jackson, Mississippi. I have bittersweet memories of my
son's first years. He was my first child and I didn't have my daughter
until Hunter was 7. I didn't have another child to "compare" his
development to, doctors seemed to feel "each child develops
differently", etc. He reached his milestones, he was just in the very
last percentile to reach them. Still, I knew he seemed detached, other
kids obviously ignored him, his art work was much different than the
other kids. Interestingly, none of the preschool teachers seemed
concerned about this. In kindergarten, (where he seemingly could not
learn the abc's) same thing: "each child is an individual, maybe he
would benefit from repeating kindergarten...". Once he was in public
school, the testing began, but he was always just outside of what they
really considered severly learning disabled, incoming and outgoing
dyslexic tendencies, but just outside the criteria recognized by the
schools, etc. etc. The IEP and 401 plans followed, but he wasn't
learning, just getting the bums rush through school. I finally received
the Sotos diagnosis when he was 8. Getting bigger and being taunted
unmercifully by other kids who were quick enough to agitate him when no
one was looking and by the time he reacted, guess who the teacher would
see? I couldn't afford to have him agitated in this manner, with latent
aggressive tendencies and it sure as heck wasn't helping the learning
environment. Enter private schools: Theoretically, a smaller class and
more individual attention would help all of the existing problems.
Realistically, by necessity the behaviorally challenged and the learning
challenged together in one room negate the potential for "individual"
attention. After 6 years of private schools, I am homeschooling him in
his last years of high school. I know I sound cynical, Hunter is almost
18 now and I have never failed to be amazed at the lack of concern about
this child's day to day life and the very real problems we face by the
very professionals I thought would help us, IE: teachers, principals,
doctors, etc. I was also unpleasantly surprised and disappointed by the
lack of support from other parents, they just wanted Hunter's isolation
to be my problem. Scouting and church activities were a letdown and we
stopped doing them. My own and only answer during these years was to
protect Hunter, understand him, help him as best I could, talk to him,
listen to him, challenge him to live up to his "potential" whatever that
may end up being (hard to know sometimes) while not burdening him and
increasing his frustration level with unrealistic expectations. These
were some of my tools: While he was in private school and in the first
years of homeschooling, I enrolled him in a Taekwondo Academy. It gave
him someplace to be, a great exercise regimen, the experience of being
part of a team, created the necessity to concentrate, look people in the
eye, try not to mumble (you say a lot of yes sirs and yes ma'ams),
improved his balance and coordination to a degree and gave him an
interest. I read to him a lot, (he struggles with reading) as a result
I discovered and other family members have told me how much he knows
about a variety of subjects. And, we tried church again once he was
older and his social skills were somewhat improved. We have had to
change to another church where the youth group seems to be more
accepting of Hunter, which was hard because we love our other church.
Hunter has had counseling also, but the Psychologist found Hunter to be
slightly depressed and lonely for friends, but handling the rejections
and other problems as they come up in a healthy and logical manner. In
short, he thinks the people who have the problem with Hunter are the
ones with the problems. He said that! Hunter dosen't take Taekwondo
anymore, it was great for him though and I highly recommend it. He
lifts weights and exercises at a local YMCA now and that seems to be
going well. He attends all church youth activities and has turned out
to be something of a Ham onstage at musical events. He spends a lot of
time on the internet chatting, but our computer is in a family room and
we are all around. Sadly, it represents a large part of his interaction
with other people. I am sorry this is so long, but life with Hunter is
a journey and it is ongoing. I hope this provides parents new to this
syndome or, struggling with the daily issues a sense that they are not
alone and that it will be ok.
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
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Message: 9
Date: Mon, 24 Oct 2005 11:25:09 -0400
From: "Pam" <pamlepro@...>
Subject: RE: To Donna - seizures/second opinion
Hi Donna,
My son does not have seizures that we know of.but I would get a second
opinion if I were you. It sounds like seizure activity and if he is
having more then maybe he should be medicated for them? Good luck and
let us know what happens.
Pam (Mom to Kevin age 6 Sotos-like)
-----Original Message-----
From: Sotosyndrome@yahoogroups.com [mailto:Sotosyndrome@yahoogroups.com]
On Behalf Of Donna Fernandez
Sent: Monday, October 24, 2005 2:08 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Answering Claudia & looking for other answers
Zak is doing well... plugging along. We just moved and he had to change
schools. he misses his old school ALOT.
Okay, here's a story for you all. Let me know if any of you have any
insight
into this one:
7
Zak had a two week fall break. He didn't know what to do with himself.
he
began asking if he could go back to Prairie Hills (his old school), so I
arranged for him to spend the day last friday as a "helper" in the
class.
everyone was thrilled that he wanted to come back to visit and Zak was
extremely excited as well. Not much more than an hour after dropping him
off, his teacher called and said I should come pick him up. he had
fallen
down and skinned his knee. But as his teacher went to help him up, she
noticed he was "jerking". she asked him what he was doing that for, and
he
answered, "I don't know". they walked back to the class room to get a
bandaid, but he kept jerking his head and arms sporadically all the way
back. she asked him if he was able to stop the jerking and he said he
couldn't. this went on for a few minutes (maybe 10?), but it was
sporadic,
not rythmic. they had me come pick him up.
By the time I got there of course it had stopped.
Our pediatric nuerologist takes fridays off, so I ended up searching the
internet and came up with "myoclonic seizure" (my own diagnosis). But
since
I've been reading this book about communication disorders, I also tried
asking him some kind of leading questions to see if I could get more
information out of him. (Zak will get frustrated when he can't think of
the
right words to explain himself, so he tends to shut down and answers
questions with "I don't know" or "maybe" or "I can't remember" alot of
the
time.) Although I have never seen this "jerking" movement before, with
the
"leading" questions, Zak says it's happened before. I had to keep
questioning him (when, where, how, show me?) but it seems that he has
had
the very same sensation in his head many, many times although not always
the
jerking movements and sometimes only head jerking, not the arms. I KNOW
that
he can turn grumpy instantly for no apparent reason. I've always said
(even
to all his doctors) that I believe he has a switch in his head that
turns
his grumpiness on and off.
I've believed he has had absense seizures since he was six months old.
But
it wasn't until Zak turned seven years old that the nuerologist finally
agreed, (upon hearing a description of a partial complex seizure from
Zak's
teacher). The nuerologist believes that the partial seizures only happen
maybe once a month, and the rest is just normal inatentivness and
grumpiness. SO he thinks it's best for Zak to stay off meds. But if I'm
right, what Zak is now describing could be seizures several times a
day...I
think it's time for a second opinion.
(Zak's seizures have never showed up on an EEG)
Any of you experienced this kind of thing before with your kids? jerking
movements while still conscious and walking? maybe even facial grimaces
or
sensations in the head that could be seizure related?
donna (Zak - 10 - Classic Sotos)
-----Original Message-----
From: Sotosyndrome@yahoogroups.com
[mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
Sent: Sunday, October 23, 2005 8:50 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Re: ways to connect with our kidsDONNA
Donna - thank you for thinking of us with regards to the book. I
will definitely get a copy of it and read it. Sounds very much like
something I could relate to. How is your sweet son doing?
Claudia (Johnny 7 1/2)
--- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
<donnaleef@a...> wrote:
>
>
>
> I Just picked up and have begun reading a book called "Maverick
Mind", by
> Cheri L. Florance, Ph.D. It has made me think of Claudia and
Johnny.
>
> Dr. Florance was a reasearcher in communication disorders when she
had son
> who was diagnosed as Autistic. It's the story of their journey.
(Like
> Claudia, she taught her son to read well before he ever made
sounds.) Her
> focus is on the difference between a visual mind vs. a verbal mind.
>
> I see lots of parralells to the way my son Zak seems to think
(although
> maybe not to the extreme discribed in this book). we have an IEP
coming up
> and it's making me think about making some changes to the way we
try to help
> Zak progress in school...focusing on the "communication disorder"
first and
> formost...
>
> I'm still reading teh book and processing my thoughts, but thought
I'd
> mention the book to you all in case any are interested. Claudia, I
thought
> you especially may be interested in this one.
>
> donna (Zak, age 10 classic sotos)
>
>
>
> -----Original Message-----
> From: Sotosyndrome@yahoogroups.com
> [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> Sent: Saturday, October 15, 2005 5:05 AM
> To: Sotosyndrome@yahoogroups.com
> Subject: [Sotosyndrome] ways to connect with our kids
>
>
> I know I've sent this before but just thought I'd do it again! I am
> traveling today with our son Johnny (Sotos) to see relatives. I
have
> the following tips on a paper (laminated) in my purse ready to
share
> with one and all (as appropriate, never forced) by means of
> directing their play with Johnny. I think it is a wonderful way to
> connect with him and thought someone here might benefit from the
> tips. They are from Dr.James MacDonald of Communicating Partners
(he
> teaches how to work with nonverbal and late talkers).
> Claudia (Johnny 7 1/2 Classic Sotos, autism, nonverbal)
>
> Dr.Jim wrote:
> Join his world then he will start doing your things as long as you
> are
> 1. doing things he can do,
> 2. responding to what he is doing
> 3. taking turns and waiting silently for him to continue
> 4. not expecting any behavior in particular- just more of what he
> can do
> 5. keep him with you for one or two more turns once he starts
> learning
> 6. make it fun; be more interesting than his distractions.
> 7. be sure to imitate him a lot; actions and sounds.
> and remember that more and longer interactions of any kind are the
> goal until he is interacting regularly with you.
> www.jamesdmacdonald.org.
>
>
>
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
> http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
Yahoo! Groups Links
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
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Message: 10
Date: Mon, 24 Oct 2005 10:17:01 -0600
From: "Donna Fernandez" <donnaleef@...>
Subject: RE: To Donna - seizures/second opinion
Thanks Pam. I'm working on that today. It may take a while, I hear it can be
a 6 month wait. I'll have to drive in to Denver (1 1/2 hour drive) for a
second opinion...we have no more pediatric nuerologists here is the Springs.
Maybe since he's already under a one nuerologist's care they will speed it
up...
donna
-----Original Message-----
From: Sotosyndrome@yahoogroups.com [mailto:Sotosyndrome@yahoogroups.com]On
Behalf Of Pam
Sent: Monday, October 24, 2005 9:25 AM
To: Sotosyndrome@yahoogroups.com
Subject: RE: [Sotosyndrome] To Donna - seizures/second opinion
Hi Donna,
My son does not have seizures that we know of.but I would get a second
opinion if I were you. It sounds like seizure activity and if he is having
more then maybe he should be medicated for them? Good luck and let us know
what happens.
Pam (Mom to Kevin age 6 Sotos-like)
-----Original Message-----
From: Sotosyndrome@yahoogroups.com [mailto:Sotosyndrome@yahoogroups.com]
On Behalf Of Donna Fernandez
Sent: Monday, October 24, 2005 2:08 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Answering Claudia & looking for other answers
Zak is doing well... plugging along. We just moved and he had to change
schools. he misses his old school ALOT.
Okay, here's a story for you all. Let me know if any of you have any
insight
into this one:
7
Zak had a two week fall break. He didn't know what to do with himself. he
began asking if he could go back to Prairie Hills (his old school), so I
arranged for him to spend the day last friday as a "helper" in the class.
everyone was thrilled that he wanted to come back to visit and Zak was
extremely excited as well. Not much more than an hour after dropping him
off, his teacher called and said I should come pick him up. he had fallen
down and skinned his knee. But as his teacher went to help him up, she
noticed he was "jerking". she asked him what he was doing that for, and he
answered, "I don't know". they walked back to the class room to get a
bandaid, but he kept jerking his head and arms sporadically all the way
back. she asked him if he was able to stop the jerking and he said he
couldn't. this went on for a few minutes (maybe 10?), but it was sporadic,
not rythmic. they had me come pick him up.
By the time I got there of course it had stopped.
Our pediatric nuerologist takes fridays off, so I ended up searching the
internet and came up with "myoclonic seizure" (my own diagnosis). But
since
I've been reading this book about communication disorders, I also tried
asking him some kind of leading questions to see if I could get more
information out of him. (Zak will get frustrated when he can't think of
the
right words to explain himself, so he tends to shut down and answers
questions with "I don't know" or "maybe" or "I can't remember" alot of the
time.) Although I have never seen this "jerking" movement before, with the
"leading" questions, Zak says it's happened before. I had to keep
questioning him (when, where, how, show me?) but it seems that he has had
the very same sensation in his head many, many times although not always
the
jerking movements and sometimes only head jerking, not the arms. I KNOW
that
he can turn grumpy instantly for no apparent reason. I've always said
(even
to all his doctors) that I believe he has a switch in his head that turns
his grumpiness on and off.
I've believed he has had absense seizures since he was six months old. But
it wasn't until Zak turned seven years old that the nuerologist finally
agreed, (upon hearing a description of a partial complex seizure from
Zak's
teacher). The nuerologist believes that the partial seizures only happen
maybe once a month, and the rest is just normal inatentivness and
grumpiness. SO he thinks it's best for Zak to stay off meds. But if I'm
right, what Zak is now describing could be seizures several times a
day...I
think it's time for a second opinion.
(Zak's seizures have never showed up on an EEG)
Any of you experienced this kind of thing before with your kids? jerking
movements while still conscious and walking? maybe even facial grimaces or
sensations in the head that could be seizure related?
donna (Zak - 10 - Classic Sotos)
-----Original Message-----
From: Sotosyndrome@yahoogroups.com
[mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
Sent: Sunday, October 23, 2005 8:50 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Re: ways to connect with our kidsDONNA
Donna - thank you for thinking of us with regards to the book. I
will definitely get a copy of it and read it. Sounds very much like
something I could relate to. How is your sweet son doing?
Claudia (Johnny 7 1/2)
--- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
<donnaleef@a...> wrote:
>
>
>
> I Just picked up and have begun reading a book called "Maverick
Mind", by
> Cheri L. Florance, Ph.D. It has made me think of Claudia and
Johnny.
>
> Dr. Florance was a reasearcher in communication disorders when she
had son
> who was diagnosed as Autistic. It's the story of their journey.
(Like
> Claudia, she taught her son to read well before he ever made
sounds.) Her
> focus is on the difference between a visual mind vs. a verbal mind.
>
> I see lots of parralells to the way my son Zak seems to think
(although
> maybe not to the extreme discribed in this book). we have an IEP
coming up
> and it's making me think about making some changes to the way we
try to help
> Zak progress in school...focusing on the "communication disorder"
first and
> formost...
>
> I'm still reading teh book and processing my thoughts, but thought
I'd
> mention the book to you all in case any are interested. Claudia, I
thought
> you especially may be interested in this one.
>
> donna (Zak, age 10 classic sotos)
>
>
>
> -----Original Message-----
> From: Sotosyndrome@yahoogroups.com
> [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> Sent: Saturday, October 15, 2005 5:05 AM
> To: Sotosyndrome@yahoogroups.com
> Subject: [Sotosyndrome] ways to connect with our kids
>
>
> I know I've sent this before but just thought I'd do it again! I am
> traveling today with our son Johnny (Sotos) to see relatives. I
have
> the following tips on a paper (laminated) in my purse ready to
share
> with one and all (as appropriate, never forced) by means of
> directing their play with Johnny. I think it is a wonderful way to
> connect with him and thought someone here might benefit from the
> tips. They are from Dr.James MacDonald of Communicating Partners
(he
> teaches how to work with nonverbal and late talkers).
> Claudia (Johnny 7 1/2 Classic Sotos, autism, nonverbal)
>
> Dr.Jim wrote:
> Join his world then he will start doing your things as long as you
> are
> 1. doing things he can do,
> 2. responding to what he is doing
> 3. taking turns and waiting silently for him to continue
> 4. not expecting any behavior in particular- just more of what he
> can do
> 5. keep him with you for one or two more turns once he starts
> learning
> 6. make it fun; be more interesting than his distractions.
> 7. be sure to imitate him a lot; actions and sounds.
> and remember that more and longer interactions of any kind are the
> goal until he is interacting regularly with you.
> www.jamesdmacdonald.org.
>
>
>
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
> http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
Yahoo! Groups Links
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
----------------------------------------------------------------------------
--
YAHOO! GROUPS LINKS
a.. Visit your group "Sotosyndrome" on the web.
b.. To unsubscribe from this group, send an email to:
Sotosyndrome-unsubscribe@yahoogroups.com
c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
----------------------------------------------------------------------------
--
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 11
Date: Thu, 24 Oct 15005 13:57:30 -0400
From: "Kellie Siers" <rottymama@...>
Subject: Claudia
Claudia,
What is the name of the book that you recommend parents read when their child is Autistic?
I know I've asked you before but I lost the information when my computer crashed.
I would like to pass the information along to a friend of mine.
Thanks.
Kellie
Rotten Rottie Mama
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 12
Date: Mon, 24 Oct 2005 19:39:53 -0000
From: "hubby4kids" <hubby4kids@...>
Subject: Re: Answering Claudia & looking for other answers
Yes, it's always good to get a second opinion. In the meantime, as
you wait to get the appointment, it might help to know that in one
of the programs we did with Johnny (Family Hope Center,
Philadelphia) they were against anti-convulsant medication so our
son was having partial complex seizures (one level below grand mal)
regularly one full year and the doctor with FHC was not overly
concerned. We were giving him vitamins and minerals according to
their recommendation. That doctor was reassuring that it was not the
worst thing in the world and that it was OK, etc. Well, we have
since then stopped with that program (if you knew all the programs
we've tried!) and now have our son on anti-convulsant meds. They are
no longer effective so we'll need to do something else. Back to your
question as to whether or not the jerking is seizure activity, it
certainly sounds like it to me. The neuro-pediatrician will know
best, of course. If you don't need to put Zak on meds all the
better!
Claudia (Johnny 7 almost 8, classic Sotos, autistic, nonverbal)
--- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
<donnaleef@a...> wrote:
>
> Zak is doing well... plugging along. We just moved and he had to
change
> schools. he misses his old school ALOT.
>
> Okay, here's a story for you all. Let me know if any of you have
any insight
> into this one:
>
> Zak had a two week fall break. He didn't know what to do with
himself. he
> began asking if he could go back to Prairie Hills (his old
school), so I
> arranged for him to spend the day last friday as a "helper" in the
class.
> everyone was thrilled that he wanted to come back to visit and Zak
was
> extremely excited as well. Not much more than an hour after
dropping him
> off, his teacher called and said I should come pick him up. he had
fallen
> down and skinned his knee. But as his teacher went to help him up,
she
> noticed he was "jerking". she asked him what he was doing that
for, and he
> answered, "I don't know". they walked back to the class room to
get a
> bandaid, but he kept jerking his head and arms sporadically all
the way
> back. she asked him if he was able to stop the jerking and he said
he
> couldn't. this went on for a few minutes (maybe 10?), but it was
sporadic,
> not rythmic. they had me come pick him up.
>
> By the time I got there of course it had stopped.
>
> Our pediatric nuerologist takes fridays off, so I ended up
searching the
> internet and came up with "myoclonic seizure" (my own diagnosis).
But since
> I've been reading this book about communication disorders, I also
tried
> asking him some kind of leading questions to see if I could get
more
> information out of him. (Zak will get frustrated when he can't
think of the
> right words to explain himself, so he tends to shut down and
answers
> questions with "I don't know" or "maybe" or "I can't remember"
alot of the
> time.) Although I have never seen this "jerking" movement before,
with the
> "leading" questions, Zak says it's happened before. I had to keep
> questioning him (when, where, how, show me?) but it seems that he
has had
> the very same sensation in his head many, many times although not
always the
> jerking movements and sometimes only head jerking, not the arms. I
KNOW that
> he can turn grumpy instantly for no apparent reason. I've always
said (even
> to all his doctors) that I believe he has a switch in his head
that turns
> his grumpiness on and off.
>
> I've believed he has had absense seizures since he was six months
old. But
> it wasn't until Zak turned seven years old that the nuerologist
finally
> agreed, (upon hearing a description of a partial complex seizure
from Zak's
> teacher). The nuerologist believes that the partial seizures only
happen
> maybe once a month, and the rest is just normal inatentivness and
> grumpiness. SO he thinks it's best for Zak to stay off meds. But
if I'm
> right, what Zak is now describing could be seizures several times
a day...I
> think it's time for a second opinion.
>
> (Zak's seizures have never showed up on an EEG)
>
> Any of you experienced this kind of thing before with your kids?
jerking
> movements while still conscious and walking? maybe even facial
grimaces or
> sensations in the head that could be seizure related?
>
> donna (Zak - 10 - Classic Sotos)
>
>
>
>
> -----Original Message-----
> From: Sotosyndrome@yahoogroups.com
> [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> Sent: Sunday, October 23, 2005 8:50 AM
> To: Sotosyndrome@yahoogroups.com
> Subject: [Sotosyndrome] Re: ways to connect with our kidsDONNA
>
>
> Donna - thank you for thinking of us with regards to the book. I
> will definitely get a copy of it and read it. Sounds very much like
> something I could relate to. How is your sweet son doing?
> Claudia (Johnny 7 1/2)
>
>
> --- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
> <donnaleef@a...> wrote:
> >
> >
> >
> > I Just picked up and have begun reading a book called "Maverick
> Mind", by
> > Cheri L. Florance, Ph.D. It has made me think of Claudia and
> Johnny.
> >
> > Dr. Florance was a reasearcher in communication disorders when
she
> had son
> > who was diagnosed as Autistic. It's the story of their journey.
> (Like
> > Claudia, she taught her son to read well before he ever made
> sounds.) Her
> > focus is on the difference between a visual mind vs. a verbal
mind.
> >
> > I see lots of parralells to the way my son Zak seems to think
> (although
> > maybe not to the extreme discribed in this book). we have an IEP
> coming up
> > and it's making me think about making some changes to the way we
> try to help
> > Zak progress in school...focusing on the "communication disorder"
> first and
> > formost...
> >
> > I'm still reading teh book and processing my thoughts, but
thought
> I'd
> > mention the book to you all in case any are interested. Claudia,
I
> thought
> > you especially may be interested in this one.
> >
> > donna (Zak, age 10 classic sotos)
> >
> >
> >
> > -----Original Message-----
> > From: Sotosyndrome@yahoogroups.com
> > [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> > Sent: Saturday, October 15, 2005 5:05 AM
> > To: Sotosyndrome@yahoogroups.com
> > Subject: [Sotosyndrome] ways to connect with our kids
> >
> >
> > I know I've sent this before but just thought I'd do it again! I
am
> > traveling today with our son Johnny (Sotos) to see relatives. I
> have
> > the following tips on a paper (laminated) in my purse ready to
> share
> > with one and all (as appropriate, never forced) by means of
> > directing their play with Johnny. I think it is a wonderful way
to
> > connect with him and thought someone here might benefit from the
> > tips. They are from Dr.James MacDonald of Communicating Partners
> (he
> > teaches how to work with nonverbal and late talkers).
> > Claudia (Johnny 7 1/2 Classic Sotos, autism, nonverbal)
> >
> > Dr.Jim wrote:
> > Join his world then he will start doing your things as long as
you
> > are
> > 1. doing things he can do,
> > 2. responding to what he is doing
> > 3. taking turns and waiting silently for him to continue
> > 4. not expecting any behavior in particular- just more of what he
> > can do
> > 5. keep him with you for one or two more turns once he starts
> > learning
> > 6. make it fun; be more interesting than his distractions.
> > 7. be sure to imitate him a lot; actions and sounds.
> > and remember that more and longer interactions of any kind are
the
> > goal until he is interacting regularly with you.
> > www.jamesdmacdonald.org.
> >
> >
> >
> >
> >
> >
> >
> >
> > Please check the Sotos Syndrome Support Association Home Page at
> > http:/www.well.com/user/sssa/
> > Yahoo! Groups Links
> >
>
>
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
> http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
________________________________________________________________________
________________________________________________________________________
Message: 13
Date: Mon, 24 Oct 2005 19:46:10 -0000
From: "hubby4kids" <hubby4kids@...>
Subject: Re: Claudia
I'm trying to think what book it is I have recommended recently. I
think you are refering to the one on communication. This is a good
book for late talkers, including autistic kids - not only to teach
speech but to learn to communicate with them and they with you. It
is a great help for us parents (and other life partners, as the
author puts it) in knowing how to connect with our kids. But what's
fun about it too is that it works with other kiddies who don't have
any problems. They respond with these methods too!
It's called Communicating with your Child, by Dr. James D. MacDonald.
You can go to his website and read about it: www.jamesdmacdonald.org.
--- In Sotosyndrome@yahoogroups.com, "Kellie Siers" <rottymama@n...>
wrote:
>
> Claudia,
>
> What is the name of the book that you recommend parents read when
their child is Autistic?
>
> I know I've asked you before but I lost the information when my
computer crashed.
>
> I would like to pass the information along to a friend of mine.
>
> Thanks.
>
> Kellie
> Rotten Rottie Mama
>
________________________________________________________________________
________________________________________________________________________
Message: 14
Date: Mon, 24 Oct 2005 13:13:04 -0700 (PDT)
From: Robin Cowley <cowley3b@...>
Subject: Re: medications???
Gosh, I wish I had advice for you. Unfortunatly, I only have support in what ever you do. As I read your post you are having a hard time with this. And I am sorry, I hope it gets better for you.
Robin
Wayne Kreider <wkreider@...> wrote:
Hello everyone. I had written in about a month ago in regards to our son David (Sotos-like) who is 10 1/2 years old. He started out the school year okay, but soon began to show more aggression towards his classmates. He started biting without anyone doing anything to him first. He also started to try to exit the classroom more, and leave the playground more often than usual. He is non-verbal, so we really don't know what the reasons are for the big changes. He has always tried to pinch or even bite, but it has only been when he is totally frustrated or doesn't want to do something that he is supposed to do. He has been on 4 mg. of Risperdal 2 times/day and also Xanax for anxiety (but only when needed.) Our one doctor wanted to try him on Buspar, but that didn't seem to help much. It actually caused him to not sleep very well. The psychiatrist that we saw two weeks ago switched him to 5mg. Risperdal in the a.m. and 4 mg. in the p.m., and also 0.5mg. to 1.0 mg. of At!
ivan
(also for anxiety.) When we have tried him on the higher dose of Ativan, he exhibits some really weird behavior. He is non-stop; just moving from one thing to the next. He isn't able to sit for very long. He has always put a lot of things in his mouth, but it seems to be a lot worse when he is on the higher Ativan dose. Yesterday, I think I was only able to leave him alone for about 2 minutes at a time. Each time I would look at him, he would have something else in his mouth. If he couldn't find anything to chew on, we would find him picking apart his Pull-Up and trying to eat that. It was a very exhausting afternoon. This week we are going to try the lower dose again (we did that two weeks ago and it was just "okay.") The psychiatrist had mentioned possibly trying Abilify (spelling?) Has anyone used this before, and if so what results did you see? I am planning on calling the psych. tomorrow to tell him what we are seeing, and hopefully we can figure this all !
out. I
am getting so tired of all the meds. changes. Any suggestions would be greatly appreciated!!!
Thanks,
Carla
Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/
---------------------------------
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Visit your group "Sotosyndrome" on the web.
To unsubscribe from this group, send an email to:
Sotosyndrome-unsubscribe@yahoogroups.com
Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
---------------------------------
---------------------------------
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[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 15
Date: Mon, 24 Oct 2005 14:58:57 -0600
From: "Donna Fernandez" <donnaleef@...>
Subject: RE: Re: Answering Claudia & looking for other answers
You might remember that Zak was on EFA's for quite a while(4-7 years old)and
this helped his behavior issues alot. (I personally think the behavior
issues are tied into seizure activity... not that they are exactly the same
but one affects the other)But the ingredients to the supplement he took
changed, and I never found another that worked quite as well. Also it seemed
that the complex partial seizures were kicking in, or getting worse...that's
when the neuro finally admitted to his seizuers and we decided to go with
the meds. a year of trying different ones and a year on depakote later, the
doc said it wasn't worth it...that the seizures wouldn't hurt him.
But the bottom line is, does it bother Zak? and I think it does! he doesn't
like getting these weird sensations in his head or having illusions of
movement or hearing changes that hurt his ears. He gets grumpy and mad at
everyone around him as if we are causing these problems for him. he actually
seems happy that I'm asking him detailed questions about it all and he's
able to communicate information to me now that he hasn't before. I'm telling
him we will try and do something about it because he shouldn't have to be
jerking... he seems relieved; More about how his head feels during it, than
the jerking movements themselves.
I really don't want the meds either, but I want for Zak to be able to deal
with this as little as possible.
His new teacher saw it today and says it looks like tourettes. I never saw
any of this new jerking and spasm stuff until just last week...now it's
happening at least three times a day it seems.
Denver neuros are scheduling into Dec. right now.
donna
-----Original Message-----
From: Sotosyndrome@yahoogroups.com
[mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
Sent: Monday, October 24, 2005 1:40 PM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Re: Answering Claudia & looking for other
answers
Yes, it's always good to get a second opinion. In the meantime, as
you wait to get the appointment, it might help to know that in one
of the programs we did with Johnny (Family Hope Center,
Philadelphia) they were against anti-convulsant medication so our
son was having partial complex seizures (one level below grand mal)
regularly one full year and the doctor with FHC was not overly
concerned. We were giving him vitamins and minerals according to
their recommendation. That doctor was reassuring that it was not the
worst thing in the world and that it was OK, etc. Well, we have
since then stopped with that program (if you knew all the programs
we've tried!) and now have our son on anti-convulsant meds. They are
no longer effective so we'll need to do something else. Back to your
question as to whether or not the jerking is seizure activity, it
certainly sounds like it to me. The neuro-pediatrician will know
best, of course. If you don't need to put Zak on meds all the
better!
Claudia (Johnny 7 almost 8, classic Sotos, autistic, nonverbal)
--- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
<donnaleef@a...> wrote:
>
> Zak is doing well... plugging along. We just moved and he had to
change
> schools. he misses his old school ALOT.
>
> Okay, here's a story for you all. Let me know if any of you have
any insight
> into this one:
>
> Zak had a two week fall break. He didn't know what to do with
himself. he
> began asking if he could go back to Prairie Hills (his old
school), so I
> arranged for him to spend the day last friday as a "helper" in the
class.
> everyone was thrilled that he wanted to come back to visit and Zak
was
> extremely excited as well. Not much more than an hour after
dropping him
> off, his teacher called and said I should come pick him up. he had
fallen
> down and skinned his knee. But as his teacher went to help him up,
she
> noticed he was "jerking". she asked him what he was doing that
for, and he
> answered, "I don't know". they walked back to the class room to
get a
> bandaid, but he kept jerking his head and arms sporadically all
the way
> back. she asked him if he was able to stop the jerking and he said
he
> couldn't. this went on for a few minutes (maybe 10?), but it was
sporadic,
> not rythmic. they had me come pick him up.
>
> By the time I got there of course it had stopped.
>
> Our pediatric nuerologist takes fridays off, so I ended up
searching the
> internet and came up with "myoclonic seizure" (my own diagnosis).
But since
> I've been reading this book about communication disorders, I also
tried
> asking him some kind of leading questions to see if I could get
more
> information out of him. (Zak will get frustrated when he can't
think of the
> right words to explain himself, so he tends to shut down and
answers
> questions with "I don't know" or "maybe" or "I can't remember"
alot of the
> time.) Although I have never seen this "jerking" movement before,
with the
> "leading" questions, Zak says it's happened before. I had to keep
> questioning him (when, where, how, show me?) but it seems that he
has had
> the very same sensation in his head many, many times although not
always the
> jerking movements and sometimes only head jerking, not the arms. I
KNOW that
> he can turn grumpy instantly for no apparent reason. I've always
said (even
> to all his doctors) that I believe he has a switch in his head
that turns
> his grumpiness on and off.
>
> I've believed he has had absense seizures since he was six months
old. But
> it wasn't until Zak turned seven years old that the nuerologist
finally
> agreed, (upon hearing a description of a partial complex seizure
from Zak's
> teacher). The nuerologist believes that the partial seizures only
happen
> maybe once a month, and the rest is just normal inatentivness and
> grumpiness. SO he thinks it's best for Zak to stay off meds. But
if I'm
> right, what Zak is now describing could be seizures several times
a day...I
> think it's time for a second opinion.
>
> (Zak's seizures have never showed up on an EEG)
>
> Any of you experienced this kind of thing before with your kids?
jerking
> movements while still conscious and walking? maybe even facial
grimaces or
> sensations in the head that could be seizure related?
>
> donna (Zak - 10 - Classic Sotos)
>
>
>
>
> -----Original Message-----
> From: Sotosyndrome@yahoogroups.com
> [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> Sent: Sunday, October 23, 2005 8:50 AM
> To: Sotosyndrome@yahoogroups.com
> Subject: [Sotosyndrome] Re: ways to connect with our kidsDONNA
>
>
> Donna - thank you for thinking of us with regards to the book. I
> will definitely get a copy of it and read it. Sounds very much like
> something I could relate to. How is your sweet son doing?
> Claudia (Johnny 7 1/2)
>
>
> --- In Sotosyndrome@yahoogroups.com, "Donna Fernandez"
> <donnaleef@a...> wrote:
> >
> >
> >
> > I Just picked up and have begun reading a book called "Maverick
> Mind", by
> > Cheri L. Florance, Ph.D. It has made me think of Claudia and
> Johnny.
> >
> > Dr. Florance was a reasearcher in communication disorders when
she
> had son
> > who was diagnosed as Autistic. It's the story of their journey.
> (Like
> > Claudia, she taught her son to read well before he ever made
> sounds.) Her
> > focus is on the difference between a visual mind vs. a verbal
mind.
> >
> > I see lots of parralells to the way my son Zak seems to think
> (although
> > maybe not to the extreme discribed in this book). we have an IEP
> coming up
> > and it's making me think about making some changes to the way we
> try to help
> > Zak progress in school...focusing on the "communication disorder"
> first and
> > formost...
> >
> > I'm still reading teh book and processing my thoughts, but
thought
> I'd
> > mention the book to you all in case any are interested. Claudia,
I
> thought
> > you especially may be interested in this one.
> >
> > donna (Zak, age 10 classic sotos)
> >
> >
> >
> > -----Original Message-----
> > From: Sotosyndrome@yahoogroups.com
> > [mailto:Sotosyndrome@yahoogroups.com]On Behalf Of hubby4kids
> > Sent: Saturday, October 15, 2005 5:05 AM
> > To: Sotosyndrome@yahoogroups.com
> > Subject: [Sotosyndrome] ways to connect with our kids
> >
> >
> > I know I've sent this before but just thought I'd do it again! I
am
> > traveling today with our son Johnny (Sotos) to see relatives. I
> have
> > the following tips on a paper (laminated) in my purse ready to
> share
> > with one and all (as appropriate, never forced) by means of
> > directing their play with Johnny. I think it is a wonderful way
to
> > connect with him and thought someone here might benefit from the
> > tips. They are from Dr.James MacDonald of Communicating Partners
> (he
> > teaches how to work with nonverbal and late talkers).
> > Claudia (Johnny 7 1/2 Classic Sotos, autism, nonverbal)
> >
> > Dr.Jim wrote:
> > Join his world then he will start doing your things as long as
you
> > are
> > 1. doing things he can do,
> > 2. responding to what he is doing
> > 3. taking turns and waiting silently for him to continue
> > 4. not expecting any behavior in particular- just more of what he
> > can do
> > 5. keep him with you for one or two more turns once he starts
> > learning
> > 6. make it fun; be more interesting than his distractions.
> > 7. be sure to imitate him a lot; actions and sounds.
> > and remember that more and longer interactions of any kind are
the
> > goal until he is interacting regularly with you.
> > www.jamesdmacdonald.org.
> >
> >
> >
> >
> >
> >
> >
> >
> > Please check the Sotos Syndrome Support Association Home Page at
> > http:/www.well.com/user/sssa/
> > Yahoo! Groups Links
> >
>
>
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
> http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
Yahoo! Groups Links
________________________________________________________________________
________________________________________________________________________
Message: 16
Date: Mon, 24 Oct 2005 14:44:59 -0700 (PDT)
From: Robin Teeple <poor_robbo@...>
Subject: Re: medications???
Hi Carla,
My daughter Jaqi (19 sotos-like) was on abilify for
about a month. It didn't seem to make a big enough
difference in her behavior to justify the side effects
(she would sweat alot, her hands shook so bad she
could hardly hold anything and she was really sleepy).
I'm not sure if the dosage was too high for her, but I
know that these are some common side effects of this
drug. I just wanted to drop a line about our
experience with that drug
Robin T
__________________________________
Yahoo! FareChase: Search multiple travel sites in one click.
http://farechase.yahoo.com
________________________________________________________________________
________________________________________________________________________
Message: 17
Date: Mon, 24 Oct 2005 22:17:40 -0000
From: "abjkv99" <abjkv99@...>
Subject: Re: report card
--
Funny I tell my daughter the same thing about boys, she has a bunch
calling her too, it's different ones they meet and in groups when she
goes places, kristopher has friends in school that are girls but has
no interest , he sees the nonsense and really could care less than to
be caught up in the drama.They are definately too young to be serious
about anyone person.
That's great the school offers cisco networking, says money taking it
in college.
Yes it is windy here, we lost power on and off like 5 times,the sun
came out around 2pm, but the wind is fierce, it's getting cold it's
supposed to be 50 on wednesday......saturday it was so hot and humid
you were dripping through your shirt( we were at a horse show at her
barn, my daughter won 3 1st trophies and a bunch of 3 2nd and 3rds,
not bad for a new barn girl, she placed in all events....her horse is
not a barrel horse but she did those anyway and got 3rd.) she also
gave a few away so her friend could get a trophy.
you are right we will be back sweating next week. My sister had a
powerline go down in her driveway, she lives like 15 mins, closer to
tampa.....my daughter went out to the farm anyway, a new horse came
so they all wanted to see it. ( the girl wanted a gentle horse, it is
cop and handicapped trained so it really just walks and trots slowly,
a bomb proof horse, nothing spooks it!!!!) I never thought I would be
so much around horses, kristopher helped walk and groom him
today....big deal for him as he didn't go out to the other farm much.
Now if I could just get him on her horse...hahahha....( he would get
on the other farm horses but not ours!!!!) I told him I would get him
a present if he did before the weeks out......we'll see.... he is
tall and spunky....more for the advanced experienced rider, so he is
a little scared of being up so high........
Might have to turn the heat on tonight...hahahahaha!!!!!!!
Arlene
- In Sotosyndrome@yahoogroups.com, Deborah Andreasen <boss4161@y...>
wrote:
>
> He doesn't have time to work out, he leaves home at 7
> AM gets out of school at 3:15 and heads straight to
> work to be there for his shift at 4PM. He changes his
> clothes in the truck..ha..he works until 9 PM the gym
> closes at 9 so no time to work out unless he goes at 6
> in the morning. Which he use to do during football
> season. But he needs the extra sleep in the morning.
> Plus he is juggling several girls..ha.. worked
> yesterday and was suppose to meet one at the mall and
> another at the fair. He didn't meet the one at the
> mall but he did go to the fair with the another
> one..ha. We are back to over six different girls
> calling him. YEAH.... I didn't like it when it was
> just one, he is to young to have one girl friend.
> Ha...
> He took his mothers advice..ha..
> How is the weather in your part of the world???
> Windy??? looks like you would be getting a lot of wind
> and rain. Our winds this morning out of the north at
> over 30 made it cool. I think fall has arrived this
> week, we can cut off the A/C for today anyway..ha.
> summer will be back next week probably. But we are
> having beautiful weather. The air is crisp and clear
> no rain.
> Jamey took electives at the school last year, typing
> etc.. he had 22 credits at the begining of this year
> needed 21 to be a senior so he is ahead but he needed
> the math and science, he already had his PE, health,
> etc. Cisco networking is an elective but if certified
> he can start out networking after high school. We
> have a networking company as well, but have sort of
> let it go down over the past couple of years. He can
> start that back up if he wants to. But he hasn't
> decided.
> He has time to decide what he wants to do after high
> school.
> Deborah
>
> --- abjkv99 <abjkv99@y...> wrote:
>
> > ---That is fantastic, especially switching schools,
> > he is definately
> > taking a full course look, many seniors take
> > electives that are more
> > fun in their senior year. I would be proud too!!! He
> > is a very hard
> > worker handling a full course load and a job!Does he
> > still work out
> > everyday too?
> > Arlene
> >
> >
> >
> > In Sotosyndrome@yahoogroups.com, "boss4161"
> > <boss4161@y...> wrote:
> > >
> > > Jamey brought home his report card Friday.... I am
> > so proud!!!!! For
> > > those who don't know him, last October 2004 his
> > school closed
> > > suddenly, here he was a junior in high school and
> > his school
> > closed.
> > > We got him in another private school that was a
> > PACE school. He
> > > finished the year out there and we enrolled him in
> > another private
> > > school to finish out his high school years. He
> > got his first report
> > > card from the new school... grades are wonderful
> > with great comments
> > > from the teachers.
> > > English 12, B, teacher comments very well behaved,
> > U. S. History
> > Good
> > > participatinon in class great Job, B, Statistics
> > You are a joy to
> > > teach, great job B, Marine Bio, very sincere about
> > school work puts
> > > forth effort, B, Cisco Networking Shows interest
> > in subject good
> > sense
> > > of humor, B Ethics Conscientiouse student
> > contributes much to this
> > > class A, And American Govt Great Job Good
> > participation in class
> > A.
> > > He had to take American history as with the
> > schools switching around
> > > some how it was left out of his classes last year,
> > and this school
> > > requires it for graduation. When he finishes he
> > will have 5 credits
> > > in History..ha. But the second school he went to
> > didn't require
> > it.
> > > But anyway.... great report card and he is having
> > a good senior
> > year...
> > > Deborah
> > >
> >
> >
> >
> >
> >
>
>
>
>
>
> __________________________________
> Yahoo! Mail - PC Magazine Editors' Choice 2005
> http://mail.yahoo.com
>
________________________________________________________________________
________________________________________________________________________
Message: 18
Date: Mon, 24 Oct 2005 17:15:15 -0700 (PDT)
From: Deborah Andreasen <boss4161@...>
Subject: Re: Re: report card
yep we will be sweating next week but for now I am
going to enjoy it...ha.. Jamey and friends went
swimming Sunday before last, the water in the pool is
a bit on the chilly side but the boys went in
anyway..ha.
Great about all the tropies, the new barn girl showed
them up..ha.. I know you are glad to have the horse
settled and your daughter enjoying riding again.
Jamey doesn't care much for the drama that some girls
like to give..ha. He rolls his eye and just laughs
when one gets upset with him. He goes a lot with
groups also. Not to much single dating. He had
rather (I think) have lots of girls around instead of
just one..ha.. My sister always told her boys they
could not have more than one girl friend at a time, to
me this means trouble. I encourage lots of them,
Jamey will go to the mall and met one on Friday and go
to the movies with another on Saturday and then do
something with a group on Sunday, well he did before
he started working. Now that takes up a lot of his
spare time. But he did tell me that before working he
didn't have a clue as to what the real world was
about. He didn't know you had to work so hard to earn
a living. He is growing up and learning what it takes
to make it in this world. Although he not real
worldly, sheltered life but he will learn in bits and
pieces. At the first job he handled himself really
well in a tough situation. He never finished the
training, a person made a remark directed at Jamey.
HE kept his cool, and left and came home. I think the
person that made the remark thought Jamey would fight
or something but he didn't. Never went back. Found
this job and although it is hard work he likes it. He
told me that the job offer of working for our
networking company is looking better all the time..
ha. that is a night after washing 1000's of dishes
ha..
The wind has blown here all day out of the north, with
just a chill in the air. I wish it would stay this
way for a while but it will not. We will have the a/c
back on in a few days. We do have just a little bit
of winter but that usually isn't until January or
February..ha.. I know you have less than we do.
Take care, keep us posted on Kristopher and the horse
ride.
Deborah
--- abjkv99 <abjkv99@...> wrote:
> --
> Funny I tell my daughter the same thing about boys,
> she has a bunch
> calling her too, it's different ones they meet and
> in groups when she
> goes places, kristopher has friends in school that
> are girls but has
> no interest , he sees the nonsense and really could
> care less than to
> be caught up in the drama.They are definately too
> young to be serious
> about anyone person.
> That's great the school offers cisco networking,
> says money taking it
> in college.
> Yes it is windy here, we lost power on and off like
> 5 times,the sun
> came out around 2pm, but the wind is fierce, it's
> getting cold it's
> supposed to be 50 on wednesday......saturday it was
> so hot and humid
> you were dripping through your shirt( we were at a
> horse show at her
> barn, my daughter won 3 1st trophies and a bunch of
> 3 2nd and 3rds,
> not bad for a new barn girl, she placed in all
> events....her horse is
> not a barrel horse but she did those anyway and got
> 3rd.) she also
> gave a few away so her friend could get a trophy.
> you are right we will be back sweating next week. My
> sister had a
> powerline go down in her driveway, she lives like 15
> mins, closer to
> tampa.....my daughter went out to the farm anyway, a
> new horse came
> so they all wanted to see it. ( the girl wanted a
> gentle horse, it is
> cop and handicapped trained so it really just walks
> and trots slowly,
> a bomb proof horse, nothing spooks it!!!!) I never
> thought I would be
> so much around horses, kristopher helped walk and
> groom him
> today....big deal for him as he didn't go out to the
> other farm much.
> Now if I could just get him on her
> horse...hahahha....( he would get
> on the other farm horses but not ours!!!!) I told
> him I would get him
> a present if he did before the weeks out......we'll
> see.... he is
> tall and spunky....more for the advanced experienced
> rider, so he is
> a little scared of being up so high........
> Might have to turn the heat on
> tonight...hahahahaha!!!!!!!
> Arlene
>
>
>
> - In Sotosyndrome@yahoogroups.com, Deborah Andreasen
> <boss4161@y...>
> wrote:
> >
> > He doesn't have time to work out, he leaves home
> at 7
> > AM gets out of school at 3:15 and heads straight
> to
> > work to be there for his shift at 4PM. He changes
> his
> > clothes in the truck..ha..he works until 9 PM the
> gym
> > closes at 9 so no time to work out unless he goes
> at 6
> > in the morning. Which he use to do during
> football
> > season. But he needs the extra sleep in the
> morning.
> > Plus he is juggling several girls..ha.. worked
> > yesterday and was suppose to meet one at the mall
> and
> > another at the fair. He didn't meet the one at
> the
> > mall but he did go to the fair with the another
> > one..ha. We are back to over six different girls
> > calling him. YEAH.... I didn't like it when it
> was
> > just one, he is to young to have one girl friend.
> > Ha...
> > He took his mothers advice..ha..
> > How is the weather in your part of the world???
> > Windy??? looks like you would be getting a lot of
> wind
> > and rain. Our winds this morning out of the north
> at
> > over 30 made it cool. I think fall has arrived
> this
> > week, we can cut off the A/C for today anyway..ha.
> > summer will be back next week probably. But we
> are
> > having beautiful weather. The air is crisp and
> clear
> > no rain.
> > Jamey took electives at the school last year,
> typing
> > etc.. he had 22 credits at the begining of this
> year
> > needed 21 to be a senior so he is ahead but he
> needed
> > the math and science, he already had his PE,
> health,
> > etc. Cisco networking is an elective but if
> certified
> > he can start out networking after high school. We
> > have a networking company as well, but have sort
> of
> > let it go down over the past couple of years. He
> can
> > start that back up if he wants to. But he hasn't
> > decided.
> > He has time to decide what he wants to do after
> high
> > school.
> > Deborah
> >
> > --- abjkv99 <abjkv99@y...> wrote:
> >
> > > ---That is fantastic, especially switching
> schools,
> > > he is definately
> > > taking a full course look, many seniors take
> > > electives that are more
> > > fun in their senior year. I would be proud
> too!!! He
> > > is a very hard
> > > worker handling a full course load and a
> job!Does he
> > > still work out
> > > everyday too?
> > > Arlene
> > >
> > >
> > >
> > > In Sotosyndrome@yahoogroups.com, "boss4161"
> > > <boss4161@y...> wrote:
> > > >
> > > > Jamey brought home his report card Friday....
> I am
> > > so proud!!!!! For
> > > > those who don't know him, last October 2004
> his
> > > school closed
> > > > suddenly, here he was a junior in high school
> and
> > > his school
> > > closed.
> > > > We got him in another private school that was
> a
> > > PACE school. He
> > > > finished the year out there and we enrolled
> him in
> > > another private
> > > > school to finish out his high school years.
> He
> > > got his first report
> > > > card from the new school... grades are
> wonderful
> > > with great comments
> > > > from the teachers.
> > > > English 12, B, teacher comments very well
> behaved,
> > > U. S. History
> > > Good
> > > > participatinon in class great Job, B,
> Statistics
> > > You are a joy to
> > > > teach, great job B, Marine Bio, very sincere
> about
> > > school work puts
> > > > forth effort, B, Cisco Networking Shows
> interest
> > > in subject good
> > > sense
> > > > of humor, B Ethics Conscientiouse student
> > > contributes much to this
> > > > class A, And American Govt Great Job Good
> > > participation in class
> > > A.
> > > > He had to take American history as with the
> > > schools switching around
> > > > some how it was left out of his classes last
> year,
> > > and this school
> > > > requires it for graduation. When he finishes
> he
> > > will have 5 credits
> > > > in History..ha. But the second school he went
> to
> > > didn't require
> > > it.
>
=== message truncated ===
__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com
________________________________________________________________________
________________________________________________________________________
Message: 19
Date: Fri, 25 Oct 15005 00:10:53 -0400
From: "Kellie Siers" <rottymama@...>
Subject: Re: Re: Claudia
Claudia,
When I saw your email addy on my screen the name "James MacDonald" popped into my head. Now, I know why.
Thanks.
Kellie
Rotten Rottie Mama
----- Original Message -----
From: hubby4kids
To: Sotosyndrome@yahoogroups.com
Sent: Monday, October 24, 2005 3:46 PM
Subject: [Sotosyndrome] Re: Claudia
I'm trying to think what book it is I have recommended recently. I
think you are refering to the one on communication. This is a good
book for late talkers, including autistic kids - not only to teach
speech but to learn to communicate with them and they with you. It
is a great help for us parents (and other life partners, as the
author puts it) in knowing how to connect with our kids. But what's
fun about it too is that it works with other kiddies who don't have
any problems. They respond with these methods too!
It's called Communicating with your Child, by Dr. James D. MacDonald.
You can go to his website and read about it: www.jamesdmacdonald.org.
--- In Sotosyndrome@yahoogroups.com, "Kellie Siers" <rottymama@n...>
wrote:
>
> Claudia,
>
> What is the name of the book that you recommend parents read when
their child is Autistic?
>
> I know I've asked you before but I lost the information when my
computer crashed.
>
> I would like to pass the information along to a friend of mine.
>
> Thanks.
>
> Kellie
> Rotten Rottie Mama
>
Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/
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Message: 20
Date: Tue, 25 Oct 2005 04:36:40 EDT
From: Drivingmissmary@...
Subject: Re: To Robin, and all those others who care =Deb
Dear Deb,
I just sat down, since the time I last posted. I thought I would take a few
minutes to shed a few tears and feel alittle sorry for myself. It's after
midnight, and my mother always said;"the more you cry, the less you pee!..always
thought I'd do my crying at night, at my age, I figure it can't hurt, besides I
could use alittle help in that Dept. I'm not sure who needs the diapers more,
me or alex.....
Then I read your post,.... I wont be able to ever tell you how I felt when I
read your letter. I dont think I ever really got the whole point of this
site, until then.....even when I first started reading these post, I thought,...
oh' sure,... right...yep....I hear ya, ....God knows, I can relate,...and the
ever increasing,.. YOURS TOO?... But, I NEVER, really believed, another person,
could feel the pain, and helplessness,the isolation,the totel disbelief, and
the shear panic. that I have felt for so long, but never felt so intense till
that moment, That one moment, that I thought, I might lose, that HOPE, That
(Message over 64k, truncated.)
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