Re: New Here

January 15, 2005

Ann,

Hi, glad you joined us. My daughter is Kennedy and she is 5 1/2 and in her

last year of special needs preschool. She has been part of the program

since she was almost a year old or less( a long time).She started out in the

EI program and then went to the pre-school program when she turned three.

Kennedy was diagnosised at birth for the most part, started having seizures

at 6 weeks. In our case we new before she born that there would be some

problems but we had no idea the extent. Kennedy currently gets 2 individual

sessions of ot,pt and speech each per week, she also goes one day a week to

a private rehab center for services as she goes to school four days a week

from 9-2. In addition to the individual sessions she also swims one day a

week and has a gym class one day a week. The school has a two full time

nurses on staff. The class rooms are a mix of a typical kids and special

needs kids up until first grade and then the a typical kids go the school in

their district and parents of the special needs children can then choice to

either keep their child at the special needs school or a school in their

county that offers special needs class's.

I hope this helps some, also you can click on our family web page below and

see pictures and read a little about Kennedy

and Kennedy(5 1/2yrs,pmg)

http://www.geocities.com/kenjenjennings/

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: New here

>Date: Sun, 16 Jan 2005 03:43:53 -0000

>

>Hello everyone,

>I am new to the group. My name is Ann, I am an educational advocate

>for children with IEP's, Individual Education Plans. My job is make

>sure that children with disablities rec' an education according to

>the law. It's more often than not, a fight to the bitter end.

>

>We have just taken on a child with PMG, I have many questions. I had

>not heard of PMG until tonight. So I have many questions, My hope is

>that all of you can give me some insight on this difference. What

>can you tell me about PGM? Anything and everything will be helpfull.

>We want this child to get the education they are entitled to by law.

>

>I have another question, How old are your children dx'd with PMG?

>When were they dx'd? What has been done for them, medically, in the

>education system? What have you gone thru, and I mean in every

>aspect! It is my understanding that each child presents differently,

>would you mind sharing this with me. I only ask for the purpose of

>understnading this child and their parents.

>

>I have a child with CAPD, I know that my son was only dx'd recently.

>What my son went thru was terrible, the public school labled him a

>behavior problem, that wasn't the case at all. They, the school

>system failed to educate him, dropped services without our

>knowledge. My son is 17, after all these years of rec'ing A's, B's &

>C's, we find out that he can not read, that he doesn't hear things

>the way we do. The school made every attempt to cover this up. We

>found out that they were doing his tesing for him, they were writing

>his papers, they did everything in their power to make my son appear

>to be with out problems, this has back fired in their faces, they

>are now paying thru the nose for him to be educated at a private

>school that deals specifically with CAPD. That is their problem, had

>they educated him the way he should have been, we would not be in

>this situation.

>

>The reason I shared my story with all of you, is for each of you to

>understand, that I have traveled a similar road, of course not the

>same, but similar. I want you all to understand I am only here to

>learn from you. I hope some of you will be willing to share your

>experiences with me, and help children in my area be educated. If I

>can assist you in amyway, please let me know!!

>

>Hugs,

>

>Ann

>

January 16, 2005

Hi Ann,

I am both mother of a child with PMG and a spec ed teacher specializing in

Autism/Aspergers. My child was diagnosed at 9 months, but did not present with

any significant delay until age 5 when seizures began. He is know 8 and in

spec ed - his first year. He has gone from excelling in school to barely making

it through the day. He has had a one on one for both observation adn

assistance. Currently he receives behavioral therapy on a daily basis to

address

eating issues that have become debilitating. None of this has been controlled

by

meds and currently we are in the presurgical phase of testing. Without the

love, understanding and support for my son his educational experience would

have been a nightmare. He is allowed to sleep when he is tired and people take

care to watch out for him including the students. I am glad that you recognize

that this is a different situation than most and want to assist as best you

can. Help the parents and always be honest with them about their child's

needs. Beyond that I think compassion is the most important thing the

educational

system must have.

Joanne

January 17, 2005

Hi Ann.

I am Sue, mom to , 3 1/2 Bifrontal PMG and Microcephaly, and also

to Meghan, almost 9 CAPD. I know exactly what you have been through

with your son as I have experienced some of the same with my

daughter. In Kindergarten, the school started " suggesting " that she

had ADHD and I have her tested. I did, it was negative. In first

grade, the same thing started over again at her IEP meeting (she had

an IEP because she was falling behind in Math and reading and needed

resource room help, thus had to be classified). I took her again for

testing, this time for CAP testing, the audiologist said she did see

some characteristics of CAPD, but felt her inability to focus was

more typical of ADHD. Back we went to another developmental Ped who

confirmed ADHD Inattentive type. We started her on Adderal XR 5mg, I

gave the meds 2 weeks and then D/C, because her teachers saw no

improvement in her ability to focus, and mostly because the meds made

her crazy. She has never had a behavior problem and the meds made her

hyper, impulsive and nasty. My girlfriend's son has ADHD, I have seen

him both on and off his meds. My daughter does not share any of the

behavior issues he has. Anyway, to make a short story long, after

many meetings and at my insistance, I finally convinced the school to

send her to an audiology institute to be re-tested for CAPD. I knew

for some time that CAP was the problem, not ADHD, and this time the

audiologist and the ENT agreed. We address her issues in the

classroom ie: she sits in the front, the teacher wears a mike so her

voice is amplified, directions are repeated, and she is given extra

time to complete her work. It's been a long road, but hopefully these

tools will allow her to get the same quality education as

the " typical " students.

Now on to PMG. My son was diagnosed at birth with Microcephaly, again

at my insistance, as I asked everyone who would listen, " Doesnt his

head seem really small? " We started out at a Neurosurgeon to be sure

his sutures were not closing early, they werent. We then went to a

Neuro and a geneticist. After all the testing was done (MRI, CT, EEG,

US, and enough bloodwork for 10 people), we came up with bifrontal

PMG, the neuro and geneticist still disagree on the cause, but all

the genetic tests have come back inconclusive. I have emailed Dr.

Dobyns(a well-known Neurogeneticist and authority in the field of

PMG) and plan to send him 's MRI films for review. We started EI

when was 7 months old. He received OT, PT and speech services.

When he turned 3 in Aug 04, we sent him to a pre-school disabled

program, where he receives PT 2x/wk, OT 2x/wk, and ST 1x/wk, along

with group therapy and pre-K educational services. I also take him to

outpatient PT 2x/wk and in the spring we will resume Hippotherapy.

Therapy is our lifeline and the only way we are going to help him be

the best he can be at this point. is most affected by his PMG

in his motor skills. Cognitively, we are told, he is very close to

age appropriate, hard to determine completely as he does not yet

speak, though he is able to convey what he wants most of the time. He

is very high tone, has trouble sitting for long periods, cannot walk

unassisted, but does well in a Rifton Pacer gait trainer. He had

muscle lenthening surgery in March 04 on his hamstrings and adductors

as his right hip was beginning to dislocate. His arms/hands are

mildly affected, he is able to hold toys, but has no pincher grasp

and cannot feed himself. His muscles in his mouth are also involved,

resulting in the speech and feeding problems, as well as drooling. He

is a very happy child, most of the time. He crys, whines, laughs and

talks(well screeches) appropriately. I have only met one other family

on this board with bifrontal PMG, many here have the perisylvan type.

My son has more motor issues than most here due to the location of

his PMG, but the luckiest part of our type of PMG is that unlike most

PMG children, we have not experienced any seizure activity (knock

wood). From the research I read so far on bifrontal PMG, it doesnt

look likely that he will have a seizure disorder, but we are keeping

our fingers crossed just the same.

Well this post has gotten really long, and I almost never post. I

do read the posts almost daily though. Feel free to email me with any

questions that I may be able to help with. Good luck.

Sue

January 19, 2005

I have a 4 year old son who was diagnosed with PMG among other things at

about five months of age. He is cognitively delayed about 2 years. He

crawls or uses a walker to move around the classroom. He is in the

public school system in preschool. He has an RN or an LPN with him at

all times, not for his PMG but for other medical issues. He will be

soon 'outgrowing' his nursing needs at school but will then have a one

on one para with him at all times. Thank you for taking such interest

in your student. People like you make a difference!

April, Kaylor's mom

New here

Hello everyone,

I am new to the group. My name is Ann, I am an educational advocate

for children with IEP's, Individual Education Plans. My job is make

sure that children with disablities rec' an education according to

the law. It's more often than not, a fight to the bitter end.

We have just taken on a child with PMG, I have many questions. I had

not heard of PMG until tonight. So I have many questions, My hope is

that all of you can give me some insight on this difference. What

can you tell me about PGM? Anything and everything will be helpfull.

We want this child to get the education they are entitled to by law.

I have another question, How old are your children dx'd with PMG?

When were they dx'd? What has been done for them, medically, in the

education system? What have you gone thru, and I mean in every

aspect! It is my understanding that each child presents differently,

would you mind sharing this with me. I only ask for the purpose of

understnading this child and their parents.

I have a child with CAPD, I know that my son was only dx'd recently.

What my son went thru was terrible, the public school labled him a

behavior problem, that wasn't the case at all. They, the school

system failed to educate him, dropped services without our

knowledge. My son is 17, after all these years of rec'ing A's, B's &

C's, we find out that he can not read, that he doesn't hear things

the way we do. The school made every attempt to cover this up. We

found out that they were doing his tesing for him, they were writing

his papers, they did everything in their power to make my son appear

to be with out problems, this has back fired in their faces, they

are now paying thru the nose for him to be educated at a private

school that deals specifically with CAPD. That is their problem, had

they educated him the way he should have been, we would not be in

this situation.

The reason I shared my story with all of you, is for each of you to

understand, that I have traveled a similar road, of course not the

same, but similar. I want you all to understand I am only here to

learn from you. I hope some of you will be willing to share your

experiences with me, and help children in my area be educated. If I

can assist you in amyway, please let me know!!

Hugs,

Ann

_____

February 7, 2005

hi Ann

just read your e mail.

my name is fiona & live in scotland. Mum to Caitlin pmg (angel with wings

age16mths) & Sofie pmg nearly 7 months.

As my children are younger than most on the group and not in the education

system i don't know if my info is any use to you but you can let me know.

regards

fiona

jjannabelles wrote: