Re: New Member Ken Shigley

[Guest guest]

We had one IEP last almost 4 hours. WHEW!

Mike

At 01:26 AM 5/15/2000 -0400, you wrote:

>How many teenagers does it take to change a light bulb?

>One. The teenager firmly grasps the light bulb, and the world rotates

>around him/ her.

>

>How is changing that lightbulb different for a teenager with ADHD?

>The world spins a lot faster around him / her, and the bulb falls out a

>breaks, causing wailing, gnashing of teeth, general consternation, an

>emergency conference with a teacher and school counselor, and perhaps an IEP

>conference.

>

> Re: New Member Ken Shigley

>

>

>Hi Ken,

>My 15 year old son does not have NF2, at least what genetic testing says.

>But we do share some things in common with the kids, is L/D, O/C/D,

>also labeled as mildly retarded. He is on LOTS of medications otherwise the

>behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

>Risperdal and also a Catapres patch. With all that he is a pretty good kid.

>When he hit puberty......life went out of control. We had to home school

>him for a few months while we had to work with the Dr's to come up with a

>balance of meds to bring him back to earth. I think the worst part is

>trying to deal with the O/C/D (obsessive compulsive disorder). But al in

>all we survive and he has a good life. We have a group here in Western PA,

>Beaver County call Best Friend. They try to match up kids with disabilites

>with other kids with no problems and do all sorts of fun stuff from

>bowling, swimming, art, acting or whatever seems to pop up to do. Great

>esteem builder for the kids.

>

>TTYL and welcome to the group,

>Mikey A in Pittsburgh PA

>

>

>

>

>At 12:35 PM 5/10/2000 -0500, you wrote:

>>

>>Sent: Tuesday, May 09, 2000

>>

>>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>>daughter, who will be 13 next month, has NF2 which was diagnosed when

>>she was in first grade when auditory testing revealed she was deaf in

>>the right ear. The summer after second grade she had facial paralysis

>>on the right side from impingement of an NF2 tumor on her facial motor

>>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>>successful in totally restoring facial mobility. (The prayer support was

>>intense!) She has other NF2 lesions intracranially (including one on the

>>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>>every 6 to 12 months since '96 have shown no change, and the hearing in

>>her good ear remains perfect. In addition to her apparently dormant

>>NF2, she does have ADHD, and deficits in central auditory processing,

>>language learning, social skills and gross motor skills. However, her

>>SSAT scores were good and she tests nearly two years above grade level

>>in math. Next fall she will enter a long-established, well-endowed

>>private school that focuses heavily on her variety of LD issues, with

>>the projection by her psychologist and the school's evaluator that she

>>will need to stay there two years before moving on to a mainstream high

>>school for college prep. (I'm thankful we live in a city where such

>>options are available, and that we can swing it.)

>>While she doesn't have a lot of athletic prowess, to put in mildly,

>>neither did I. She enjoys participating in a relatively non-competitive

>>swim team, has completed several junior road races (not willing to try a

>>10K yet), and hopes to go out for crew in another year. She enjoys

>>camping, and will got on a two-week wilderness program (back country

>>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>>week at Space Camp. Her social skills have a great deal of room for

>>improvement, but she greatly enjoys our church's youth fellowship group

>>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>>at one of the top banks, and got a lot of encouragement about attaining

>>success despite ADHD and LD obstacles. This week she is printing up her

>>babysitting business cards with attached refrigerator magnets to

>>distribute in the neighborhood as soon as she turns 13.

>>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>>from my daughter and my wife, who had a large benign meningioma removed

>>years earlier. Her results were suggestive but not conclusive.

>>

>>My particular interests in NF2 include:

>>* links to ADHD and LD

>>* NF2 issues in puberty and beyond

>>* research re: gene therapy and suppression of tumor growth

>>* success stories of people with NF2, ADHD and LD challenges

>>* treatment options

>>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>>can be helpful re: NF2

>>* college and career choices for kids with NF2, ADHD and LD challenges

>>* reproductive issues in NF2

>>

>>Thank you.

>>

>>_____________________________________________

>>NetZero - Defenders of the Free World

>>Click here for FREE Internet Access and Email

>>http://www.netzero.net/download/index.html

>>

>>

>>

>>

>

>

>

>

>

>

>

>

[Guest guest]

Whats an IEP?

ashley wrote:

> We had one IEP last almost 4 hours. WHEW!

> Mike

>

>

[Guest guest]

In a message dated 5/15/00 3:48:17 PM US Mountain Standard Time,

mcdrew@... writes:

<< What is IEP? Marie >>

Individual Education Plan, it's for special needs children. They get their

own specialized plans for school rather than the overall curriculum other

children get. )

~Used to work with developmentally disabled children and adults

[Guest guest]

What is IEP? Marie

Re: New Member Ken Shigley

>>

>>

>>Hi Ken,

>>My 15 year old son does not have NF2, at least what genetic testing says.

>>But we do share some things in common with the kids, is L/D, O/C/D,

>>also labeled as mildly retarded. He is on LOTS of medications otherwise

the

>>behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

>>Risperdal and also a Catapres patch. With all that he is a pretty good

kid.

>>When he hit puberty......life went out of control. We had to home school

>>him for a few months while we had to work with the Dr's to come up with a

>>balance of meds to bring him back to earth. I think the worst part is

>>trying to deal with the O/C/D (obsessive compulsive disorder). But al in

>>all we survive and he has a good life. We have a group here in Western PA,

>>Beaver County call Best Friend. They try to match up kids with

disabilites

>>with other kids with no problems and do all sorts of fun stuff from

>>bowling, swimming, art, acting or whatever seems to pop up to do. Great

>>esteem builder for the kids.

>>

>>TTYL and welcome to the group,

>>Mikey A in Pittsburgh PA

>>

>>

>>

>>

>>At 12:35 PM 5/10/2000 -0500, you wrote:

>>>

>>>Sent: Tuesday, May 09, 2000

>>>

>>>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>>>daughter, who will be 13 next month, has NF2 which was diagnosed when

>>>she was in first grade when auditory testing revealed she was deaf in

>>>the right ear. The summer after second grade she had facial paralysis

>>>on the right side from impingement of an NF2 tumor on her facial motor

>>>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>>>successful in totally restoring facial mobility. (The prayer support was

>>>intense!) She has other NF2 lesions intracranially (including one on the

>>>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>>>every 6 to 12 months since '96 have shown no change, and the hearing in

>>>her good ear remains perfect. In addition to her apparently dormant

>>>NF2, she does have ADHD, and deficits in central auditory processing,

>>>language learning, social skills and gross motor skills. However, her

>>>SSAT scores were good and she tests nearly two years above grade level

>>>in math. Next fall she will enter a long-established, well-endowed

>>>private school that focuses heavily on her variety of LD issues, with

>>>the projection by her psychologist and the school's evaluator that she

>>>will need to stay there two years before moving on to a mainstream high

>>>school for college prep. (I'm thankful we live in a city where such

>>>options are available, and that we can swing it.)

>>>While she doesn't have a lot of athletic prowess, to put in mildly,

>>>neither did I. She enjoys participating in a relatively non-competitive

>>>swim team, has completed several junior road races (not willing to try a

>>>10K yet), and hopes to go out for crew in another year. She enjoys

>>>camping, and will got on a two-week wilderness program (back country

>>>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>>>week at Space Camp. Her social skills have a great deal of room for

>>>improvement, but she greatly enjoys our church's youth fellowship group

>>>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>>>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>>>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>>>at one of the top banks, and got a lot of encouragement about attaining

>>>success despite ADHD and LD obstacles. This week she is printing up her

>>>babysitting business cards with attached refrigerator magnets to

>>>distribute in the neighborhood as soon as she turns 13.

>>>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>>>from my daughter and my wife, who had a large benign meningioma removed

>>>years earlier. Her results were suggestive but not conclusive.

>>>

>>>My particular interests in NF2 include:

>>>* links to ADHD and LD

>>>* NF2 issues in puberty and beyond

>>>* research re: gene therapy and suppression of tumor growth

>>>* success stories of people with NF2, ADHD and LD challenges

>>>* treatment options

>>>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>>>can be helpful re: NF2

>>>* college and career choices for kids with NF2, ADHD and LD challenges

>>>* reproductive issues in NF2

>>>

>>>Thank you.

>>>

>>>_____________________________________________

>>>NetZero - Defenders of the Free World

>>>Click here for FREE Internet Access and Email

>>>http://www.netzero.net/download/index.html

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>>

>>

>>

>>

>

>

>

>

>

[Guest guest]

Ken,

I know it's not easy but sounds as though you and your wife are

handling your daughter's NF2 very well. Personally, thus far none of our

three sons show any signs of having NF2. I was a spontaneous mutation thus

the first in my family to be diagnosed with it. As you have discovered by

now NF2 is very unpredictable and may or may not rear its ugly head at any

time. I was diagnosed with NF at age 20, in 1977, after surgery to remove an

AN on my left side as well as two other brain tumors. I was deaf in that ear

before the surgery. In 1986, I had an AN removed from my right side. I woke

up from that surgery deaf in my right ear and thus totally deafened.

Our middle son was diagnosed with ADHD in April 1990. Although my

husband and I have discussed putting him on medication more than once, we

haven't. We have home schooled all three of our sons since 1991. We home

schooled just the middle, ADHD son the first year in 1990. He did so well

that first year we continued schooling him and brought his two brothers home

the next year.

Have you been in tough with the Acoustic Neuroma Association there in

Atlanta ? They're a WONDERFUL group ! God bless your family.

K.

Re: New Member Ken Shigley

>Thanks. I realize that as Anne gets older she needs to be prepared to deal

>with this on her own. There has been so much other stuff going on, with

>ADHD, LD, ostracism at school, etc., that up til now we have just avoided

>burdening her with more bad stuff that we felt ready to load on

>her. However, as she matures we need to let her take ownership of all

>these things so that she can learn to fight them herself. It's tough

>finding the right time to do so.

>

>Ken

>

>At 12:48 PM 5/12/00 -0400, you wrote:

>>Ken,

>> is right, the drs. have NO right to tell her that - nor should

anyone

>>for that matter. First off, let me just say that i never even brought this

>>topic up with my daughter. I feel that when my daughter becomes a mature

>>adult and the time comes she will make the right decision for herself. Its

>>not up to me or the drs. All I know is that i will support her decision

>>either way. a is very aware of whats going on in her life. Very

>>similar to your situation - deaf on one side and just watching other side.

I

>>felt i have to prepare her the best i could. She is currently taking asl

>>through the school system (which after i presented the school with her

>>records and got her special servcices through boces) got her 2 periods a

>>week of teaching it and she is doing great. a has alot of

>>determination and is a fighter. She never lets the disease stop her. I

>>think that at such a young age she has adapted very well and i just felt

that

>>although its rough telling them , its much better to open the

communication

>>and not " fear " but conquer " . I love my daughter and it really really hurts

>>to watch her suffer, especially for her future, but she brings so much

love

>>my way that i just live for day and enjoy her unconditionally. Ken my

>>daughters email address is krissy9187@.... Let your daughter write to

>>her. Sincerely,

>>

>

> L. Shigley

>SHIGLEY LAW FIRM, L.L.C.

>3166 Mathieson Drive, NE

>Suite 200

>Atlanta, GA 30305

>kshigley@...

>http://AtlantaInjuryLawyer.com

>Voice: (404)364-1999

>Fax: (404)364-0880

>

>

>

>

>

>