Attached is a
letter from an instructional assistant looking for part time work this summer.Â
I can personally recommend Flo to any family as she was my son’s 1:1 assistant
when he began the program at 3 years old. Flo is kind, warm and very caring woman.Â
I am an
instructional assistant at Woods Road School helping teach pre-school children
with autism. I have worked with students from age five to eleven. I am
entering my ninth year at Woods Road School. I desire a part time position
providing support to children with autism.
I have Eden
Institute training in Applied Behavior Analysis and experience in discrete
trial teaching. I assist students with classroom activities such as
handwriting, reading, academics, and specials (gym, art, music). I also assist
with self-help skills:Â bathroom, toilet-training, lunch, teaching shoe tying,
buttoning/zippering. Additionally, I have worked at Camp Heart as part of the
extended school year; one half of the day was spent teaching while the other
half of the day I assisted with camp activities including:Â arts and crafts,
cooking, physical education, and social skill reinforcement.
On a personal
note, my eighteen-year old twin sons were classified with learning disabilities
at age five. The Child Study Team, teachers, special education teachers and my
family worked together to make my sons successful in school. They are both
going off to college this fall. I am extremely grateful for the support given
to my sons, and I am proud of their many accomplishments.
Because of my life
experience raising my sons with learning disabilities and helping teach
children with autism in the public school system, I am very comfortable
providing care to the families who participate in your network.
Thank you for
reviewing my application and I look forward to hearing from you.
                                                                  Sincerely
yours,
                                                                  Florence
Goddiess
Just a reminder that if you are a part of our respite care
program that many respite care providers are looking for work for the
summer. We have recently added a few instructional assistants and
teachers looking for one to one support part time positions this summer.
Email me offline with the specifics about your children,
type of support you are looking for, hours and salary and I will do my best to
help find you a match!
If you are not part of our program and are interested in
details please contact me offline as well.
I will keep praying for Joe. If he has to be out of school for an extended period of time he should be entitled to homebound instruction, which means teachers and/or therapists would see him at home. If need be check into it with your district.
Good luck with everything on Monday. Re: your question, I've taken Emily out of school twice, for a month at a time, for medical/treatment reasons. It was a very simple process of simply letting the school and the district casemanager know about the situations and the dates Emily would be gone. She just resumed participation in her school program as soon as we got back, each time.
Amy
-------------- Original message from "dianelanglamorticella" <dianelanglamorticella@...>: --------------
Hi everyone! Joe Joe had his MRI done, under sedation, for the 7th time, he is only three years old. I want the next dose of sedation to be for MEEEEEE!! LOL
So, the radiologist said she does not see anything, but the xray showed something on his left femur, so we still dont know if he has an osteosarcoma or leukemia, but, we have an appoinment coming up on Monday, June 1, at Sloan-Kettering in Manhattan, the wheels on the minivan go where they need to go!!
So, we still dont know much, but, I am happy that we dont have an MRI that shows some horrible tumor invading his femur! I am praying that this is some sort of medical mistake, and the pediatric oncologist will tell us that its not cancer, but since we realized his alkaline phosphatase is so high, 6470, and it should be about 300, we really need to pursue this. I am hoping we will rule out leukemia too! If anything bad IS there, then we must have caught it early, because the alkaline phosphaste test was normal the last time it was checked, in October, 2008.
Could I actually say now that I am happy that my son has epilepsy? YUP, because if he did not have epilepsy we would not have done the blood test that told us to go over him again, with yet another fine toothed comb and some more doctors, we already have a bunch of them, but this is his most serious type of problem so far.
Please keep Joseph in your prayers, my father in law will watch Amanda on Monday, and I am praying too that we dont have to take a leave of absence from Joseph's school. We have a great IEP that I am happy with for now, and he is in the ESY program, so I am hoping that our lives wont have to turn upside down to take care of this, but, if it does, than we will do what we need to do.
Has anyone ever taken a leave of absence from school for medical problems? I guess if it becomes necessary, I would need to tell my district in writing, and I will do that when we know more. I dont know if Joseph will need some form of radiation treatments or chemotherapy, and if he does, I would be happy to take him out of school to protect while his immune system is down, and then have him return to school at a later date, when the doctor says its OK. With all the stuff in the news about swine flu, and my daughter had strep last week, and then I caught it, so if that what we need to do, then I just need to find out what is required to put his school plans on hold.
Also, I saw a picture of Mrs Biondi's new little boy, Matthew, in my daughter's school, Christ the King, in Manville, so Congratulations to the Biondi bunch!!! God Bless you!!! Diane LaMorticella
Hi everyone!
Joe Joe had his MRI done, under sedation, for the 7th time, he is only
three years old. I want the next dose of sedation to be for MEEEEEE!! LOL
So, the radiologist said she does not see anything, but the xray showed
something on his left femur, so we still dont know if he has an osteosarcoma or
leukemia, but, we have an appoinment coming up on Monday, June 1, at
Sloan-Kettering in Manhattan, the wheels on the minivan go where they need to
go!!
So, we still dont know much, but, I am happy that we dont have an MRI that
shows some horrible tumor invading his femur! I am praying that this is some
sort of medical mistake, and the pediatric oncologist will tell us that its not
cancer, but since we realized his alkaline phosphatase is so high, 6470, and it
should be about 300, we really need to pursue this. I am hoping we will rule
out leukemia too! If anything bad IS there, then we must have caught it early,
because the alkaline phosphaste test was normal the last time it was checked, in
October, 2008.
Could I actually say now that I am happy that my son has epilepsy? YUP,
because if he did not have epilepsy we would not have done the blood test that
told us to go over him again, with yet another fine toothed comb and some more
doctors, we already have a bunch of them, but this is his most serious type of
problem so far.
Please keep Joseph in your prayers, my father in law will watch Amanda on
Monday, and I am praying too that we dont have to take a leave of absence from
Joseph's school. We have a great IEP that I am happy with for now, and he is
in the ESY program, so I am hoping that our lives wont have to turn upside down
to take care of this, but, if it does, than we will do what we need to do.
Has anyone ever taken a leave of absence from school for medical problems?
I guess if it becomes necessary, I would need to tell my district in writing,
and I will do that when we know more. I dont know if Joseph will need some
form of radiation treatments or chemotherapy, and if he does, I would be happy
to take him out of school to protect while his immune system is down, and then
have him return to school at a later date, when the doctor says its OK. With
all the stuff in the news about swine flu, and my daughter had strep last week,
and then I caught it, so if that what we need to do, then I just need to find
out what is required to put his school plans on hold.
Also, I saw a picture of Mrs Biondi's new little boy, Matthew, in my
daughter's school, Christ the King, in Manville, so Congratulations to the
Biondi bunch!!! God Bless you!!!
Diane LaMorticella
Join us for the Official Record Release Party!
mr. RAY IS RELEASING HIS NEW ALBUM,
W E L C O M E T O T H E M U S I
C R O O M on June 14th 11am-1pm!
Performing songs from the new album (and ol’ faves)
with a kids chorus & band!
Special guest star, Bob Bandiera, performer/songwriter,
musician with Bon Jovi & Southside Johnny!
Bobby appears on mr. RAY's new album, as well.
GET TIX: www.mrray.com/themusicroom.htm
June 14th 11am-1pm
The Heldrich Hotel (in the ballroom)
10 Livingston Ave New Brunswick NJ
Characters from mr. RAY’s songs will be there for photo op’s,
nationally-known magician, Josh Beckerman,
face-painting, tattoos, coloring, refreshments & so much more!
Finally, now we have an MRI being done on Tuesday, May 26 for Joe Joe, and his
visit with the Pediatric oncologist is on June 1, at Sloan Kettering Cancer
hospital, in Manhattan. I am hoping and praying that this will be some type of
false alarm, our pediatrician is going to be watching for the results on Tuesday
afternoon for us. Hopefully, we will have a sense of direction after our June 1
appointment. We went shopping for a kiddie pool today, I did not really have
the money this week, but, I figured if our summer is going to get turned upside
down, I want the kids to have time to play in the kiddie pool in the backyard
now.
Joseph will be plenty angry with me on Tuesday, because he will be getting
some chloral hydrate to sedate him, this is his 7th time under some type of
sedation in three years. Our pediatrician thinks that we will probably have to
get some type of surgery for the suspicious lesion in Joseph's left femur to be
removed, at a minimum. Sloan Kettering has a doctor who is a pediatric
orthopedic oncologic surgeon, with 25 years experience, so we will be seeing him
too.
If we have to, he will take a leave of absence from school, but we will try
and avoid that. I got a note from the insurance today that they wont cover any
speech therapy for him. I just said, OH well, I have to be his Physical
therapist, now I have be his speech therapist too! Now the important think is
to keep him alive! And keep things as normal as possible for Amanda too!
Tuesday seems like a long time from now, and so does June 1, but, they are
not. wish us luck! Thank you for all your prayers so far! Have a great holiday
weekend! Diane LaMorticella
--- In Care-to-ShareSupportNetwork@yahoogroups.com, "dianelanglamorticella"
<dianelanglamorticella@...> wrote:
>
> just when I thought we could settle into a routine, the ESY is all set up and
I even found a place to do some speech therapy with Joe Joe over the summer, my
daughter has a summer camp that she is all registered with and its paid for,
......
> Joseph has had a very high alkaline phosphatase blood test, we repeated
it, and its high, not a lab error. The result is about 6400, it should be
about 300, it was in the fall, we did some blood tests then when we were taking
him off Phenobarbital, and it was normal then. Now we did a new blood test,
actually it was a Keppra level, and we found this by accident, so we did some
x-rays and a liver ultrasound a few days ago, and the x-ray shows a lytic lesion
of boney destruction in one femur, so now we have to do a bone MRI.
> Crap, we just did an MRI of his brain on March 1. His MRI require
sedation, so now he gets to be sedated AGAIN!! and, this is not the kind of
stuff we can wait around and take care of, our pediatrician is finding a good
radiology expert he knows, and if it is an Osteoblastoma, the treatment is
surgical resection and local radiation treatments!!!
> SHIT, can we just go back to Epilepsy and Cerebral palsy please!!!!wasnt
THAT enough? so, now the schedules go down the toilet, and we drop we are doing
and run, hoping that we are treating this before it has become something that
has metastasized, and I thought it was bad that my kid cant walk or talk
right????
> DRAMA, I HATE IT!!!
> I wish I was somebody else, how did I get this far without needing
anti-depressants, or becoming a fregging alcoholic!
> We have an IEP that is good, and his teacher and school nurse are doing
great, even the bus driver is so patient about waiting for Joe Joe to get up
into the bus each morning, and now, we have to hightail our butts to go to
whichever hospital we need to so that we can take care of this. I HATE MY
LIFE!!!!
> so, if you think you have problems? just remember, things could always
be worse! at least my husband has not been laid off and we still have our
health insurance. Damn, I hate this crap, I wish the drama would go away!!!!
I have taken consolation many times in the past two years that "at least my son
does not have anything that is life threatening" and now, we possibly do.
> The pediatrician is calling another doc he knows who would be able to
help, and I asked him to line us up with a hematology and ocology doctor because
I would like to get the MRI done, and a bone marrow biopsy right away, instead
of two separate procedures, and separate doses of sedation. He asked me if I
mind going to Overlook hospital, I said, hell, I will go anywhere, that has been
my life's story for the past two years.
> Wish me luck, I have to explain this to my husband tonite when he gets
home from work. Looks like this is gonna be one hell of a summer. Now I have
to go find babysitters for Amanda so that she is not left stranded while I am at
some other fregging hospital with Joseph and my husband is trying to hold on to
his job. This sucks, I was just trying to figure out how I could get back to
work too!!!!!
> Diane LaMorticella (mother of Amanda, 5, a TD princess, and Joe-Joe,
with myoclonic epilepsy, external hydrocephalus, Cerebral palsy, mild
sensorineural hearing loss, a heart murmur, takes Keppra daily, wears SMO's for
his gait, and various developmental delays.)
>
--- On Thu, 5/21/09, Exceptional Parent Magazine <mmarlowe@...> wrote:
From: Exceptional Parent Magazine <mmarlowe@...> Subject: Register for New EPLiveOnline Seminar: Recognizing & Managing Seizures In the School Setting To: "dianelanglamorticella@..." <dianelanglamorticella@...> Date: Thursday, May 21, 2009, 10:35 AM
An Invitation to an Online Program —
Recognizing and Managing Seizures Within the School Setting
An Online Seminar for Educators, Healthcare Professionals and Families
Join EP LiveOnlineâ„¢ for a seminar that discusses what educators, school administrators, nurses and families need to know about seizures. Focus is on the need for a seizure readiness plan within the school setting, including tips on medication administration in this setting and information on the efficacy and safety of medications.
August 11, 2009 7:00-9:30 PM ET
Made possible in part by an educational grant from Valeant Pharmaceuticals, Inc.
Participate Live Online !
Who Should Attend: Nurses; Educators and School Administrators; Physicians; Allied Health Care Professionals; Families and Caregivers; Institutions Serving the MR/DD Population: State and Privately-held Facilities, Military Healthcare Personnel.
Supported by Epilepsy Foundation of New Jersey
Distinguished faculty includes:
John M. Pellock, MD Professor and Chair, Division of Child Neurology Virginia Commonwealth University Kathy O’Hara, RN Epilepsy Nurse Clinician Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University
Keith Vaux, MD, Moderator Medical Director, Continuing Medical Education Children’s Specialist of San Diego Rady Children’s Hospital San Diego
Exceptional Parent 416 Main Street Johnstown, PA 15901
To unsubscribe from this email list please click UNSUBSCRIBE.
The Young Athlete Program is hosting a morning full of sports skills activities and a bike workshop for children with intellectual disabilities, 2 1/2 - 7 years of age during Summer Games 2009.
Parents/Caregivers (and siblings age 6 and under) are invited to attend and participate with their children.
The sports skills activities include a range of play-based opportunities for the whole family to enjoy. The bike workshop will teach families how to implement bike riding techniques and safety awareness strategies with their children.
The fun atmosphere will not only offer your family the chance to share in the success of your future athlete, but also the opportunity to visit other Special Olympics venues to witness the potential of your future athlete.
--- On Wed, 5/20/09, d_annatkinson <dbishop76@...> wrote:
From: d_annatkinson <dbishop76@...> Subject: [IEP_guide] Intro and Looking For Assistance To: IEP_guide@yahoogroups.com Date: Wednesday, May 20, 2009, 11:37 AM
Dear Friends,
My name is D'Ann Bishop (formerly Atkinson). I was a member of this group a few years ago and it it helped me tremendously with my children, 13 and 11, both of whom are in Special Education.
Today my children are well and successful in school, thanks in part to the help I received from parents like yourselves.
My experiences have left me with much to say about special education in this country and in particular about the use of restraint and seclusion as a behavior modification tool. Currently there is legislation before Congress to ban this practice and I am writing a magazine article about this.
As such, I am looking for parents who have stories they would be willing to share about this. I plan to interview one family as a feature for the article, as well as psychologists and legislators that are working to pass this bill.
If you would be willing to share your story (real names may be omitted if
you are more comfortable with that) please contact me offline at dbishop76@gmail. com.
Thank you in advance for your help and participation to being to light this destructive and abusive practice.
Thank you, Eileen. That case is very encouraging.
Jessica
--- In Care-to-ShareSupportNetwork@yahoogroups.com, Eileen Reilly-Horch
<reillye@...> wrote:
>
> Hi,
>
> Here is a link to an article that mentions the court case I was trying to find
for you. I don't have the time to get a link to the full case. I'd suggest
looking it up on wrightslaw.com perhaps.
> Here's the link:
> http://www.drcnh.org/Maine.htm
> The gist of it is that the circuit court which covers Maine ruled in 2008 that
social skills *are* education. The fact that someone doesn't need academic
help, per se, does not exclude them from being eligible. If you follow that
line of thinking, then having goals for such would be appropriate.
>
> You're not the only one who has had this struggle, believe me!!
>
> Good luck
> Eileen
>
> --- On Mon, 5/18/09, jessicajlh2002 <jessicajlh2002@...> wrote:
>
> From: jessicajlh2002 <jessicajlh2002@...>
> Subject: [Care to Share Support Network] Questions about Social Goals in
General Education
> To: Care-to-ShareSupportNetwork@yahoogroups.com
> Date: Monday, May 18, 2009, 11:39 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> Hello,
>
>
>
> I have some follow-up questions regarding the IEP social goals in my previous
post. The followings are some behavioral/social goals I requested to add to my
son's IEP (I've also added some pragmatic language goals separately), but our
case manager told me since my son will be in general education, his goals would
be the general ed goals and he will not have an IEP that includes the skills
which are taught at the kindergarten level. I don't agree with that because I
think a kindergarten teacher will not teach those social skills and monitor the
progress specifically. Since my son had the PDDNOS diagnosis and social skills
are definately his weakness, I feel very strongly to keep those social goals in
his IEP. Is it common for a PDDNOS kid mainstreamed but still has soical goals?
Any strategies/talking points I could use to convince our school district?
>
>
>
> - make appropriate eye contact with peers and adults during various
activities.
>
> - take turns with 2 or more peers during a structured game.
>
> - Given a 10 minutes non-structured or structured play situation,
appropriately initiate or respond to interactions with peers at least 2 times.
>
> - attend in a large group (10 or more) for 20 minutes by looking at the
speaker and/or orienting his body toward the speaker or relevant stimuli.
>
> - learn new abstract concepts in a large group (10 or more) 9 out of 10 times.
>
> - follow social cues in the classroom, ie. peers sitting in circle/cleaning
up/lining up and joins.
>
> - vocalize an appropriate statement or comment when he is frustrated, upset,
needs help or doesn't understand a concept or direction.
>
> - always raise hands and wait to be called on when he wants to ask/answer a
question or needs teacher's attention in the classroom.
>
> - vocalize his personal needs and feelings, ie. use the bathroom,
thirsty,hungry, hurt.
>
>
>
> Any suggestion/advice would be greatly appreciated.
>
>
>
> Jessica
>
Hello,
I am interested in working with children between the ages of 4 and 12
this summer in a learning environment to help me grow as an educator.
This could include a therapeutic center or tutoring, and may include
children with special needs.
I have been teaching for over 6 years, the last 5 in Branchburg School
District at Whiton Elementary School. I have had many years of
childcare experience as well. Attached is my resume. Please let me
know if you have any questions.
Christy Bitner
First Grade Teacher
Whiton Elementary School
From:
autism_in_hunterdon@yahoogroups.com
[mailto:autism_in_hunterdon@yahoogroups.com] On Behalf Of Hilary Sent: Tuesday, May 19, 2009 1:48 PM To: autism_in_hunterdon@yahoogroups.com Subject: [autism_in_hunterdon] Gary Null's new movie
Gary Null's new movie is premiering at
AutismOne this weekend, but there will also be showings in early June (June
5-11) in Greenwich Village at 2pm and 6pm. If anyone is interested, let me
know.
AUTISM: MADE IN THE USA
Many of you may remember the staff of Gary Null & Associates at Autism One
last year filming, including award-winning senior producer Manette Loudon. We
are proud to announce a new film from this award-winning team (e.g., Vaccine
Nation; Drugging of our Children; Gulf War Syndrome: Killing Our Own; and AIDS
Inc.).
Autism. What is it and why is it on the rise? In this feature-length
documentary presentation, award-winning executive producer Gary Null is on a
quest to reveal the true causes and promising solutions for the recent dramatic
increase in autism in our children. Is autism related to environmental factors?
Could it be caused by mercury, aluminum, stealth viruses, or other toxins
contained in the 40-odd vaccines that every American child's parent is told
they must receive? What are other environmental or genetic factors that could
be contributing to the epidemic increase in childhood autism? In this
pioneering educational film, Dr. Null will be interviewing some of the world's
leading experts on childhood autism. A full spectrum of medical and scientific
views will be presented, both orthodox and non-traditional, to get at the real
reasons behind this childhood scourge. Novel effective therapies will be
explored, showing that both the problem and solution of autism could be linked
to weakened childhood immune systems, the inability of some children to rid
their bodies of heavy metals and injected viruses, and unusual reactions to
environmental toxins, foods, and proteins. The film will consider that there
are successful biomedical treatments for autism including utilizing special
dietary supplements and gluten-free/casein-free (GF/CF) diets as well as
chelation and hyperbaric oxygen therapies. Some of these natural solutions are
being challenged by the pharmaceutical industry as unproven. But could it be
that the drug companies stand too much to lose from a more critical scrutiny of
our national policy of compulsory vaccinations for infants and children? These
and other important issues woven into the fabric of the autism debate will be
examined in detail in this film. Children and their symptoms, parents and how
they are coping, and the various treatments and the positive effects that they
are having on the children will also be highlighted. The film will document
dramatic recoveries and improvement in the symptoms of autism, which can be
directly observed in the children's behavior.
Autism is a major growing health problem in America today. But it is not a
death sentence. In this film, Gary Null will peel away the ignorance and
misconceptions and show how concerned parents and health care providers can
finally take some solace in finding effective treatments for this debilitating
whole-body condition.
*Advocating the Rights of Students with Disabilities and Their Families*
Notice: This e-mail correspondence, including any attachments, is for the sole use of the intended recipient(s) and may contain information that is confidential and/or privileged. If you are not the intended recipient or agent thereof, be advised that you have received this e-mail correspondence in error and any use, dissemination, disclosure, printing, copying, or any action taken in reliance on the contents of this e-mail correspondence is strictly prohibited. If you have received this e-mail correspondence in error, please notify the sender immediately by return e-mail and delete the original message, attachments and all copies of the original message from your system.
Here is a link to an article that mentions the court case I was trying to find for you. I don't have the time to get a link to the full case. I'd suggest looking it up on wrightslaw.com perhaps. Here's the link: http://www.drcnh.org/Maine.htm The gist of it is that the circuit court which covers Maine ruled in 2008 that social skills *are* education. The fact that someone doesn't need academic help, per se, does not exclude them from being eligible. If you follow that line of thinking, then having goals for such would be appropriate.
You're not the only one who has had this struggle, believe me!!
Good luck Eileen
--- On Mon, 5/18/09, jessicajlh2002 <jessicajlh2002@...> wrote:
From: jessicajlh2002 <jessicajlh2002@...> Subject: [Care to Share Support Network] Questions about Social Goals in General Education To: Care-to-ShareSupportNetwork@yahoogroups.com Date: Monday, May 18, 2009, 11:39 PM
Hello,
I have some follow-up questions regarding the IEP social goals in my previous post. The followings are some behavioral/social goals I requested to add to my son's IEP (I've also added some pragmatic language goals separately), but our case manager told me since my son will be in general education, his goals would be the general ed goals and he will not have an IEP that includes the skills which are taught at the kindergarten level. I don't agree with that because I think a kindergarten teacher will not teach those social skills and monitor the progress specifically. Since my son had the PDDNOS diagnosis and social skills are definately his weakness, I feel very strongly to keep those social goals in his IEP. Is it common for a PDDNOS kid mainstreamed but still has soical goals? Any strategies/talking points I could use to convince our school district?
- make appropriate eye contact with peers and adults during various activities.
- take turns with 2 or more peers during a structured game.
- Given a 10 minutes non-structured or structured play situation, appropriately initiate or respond to interactions with peers at least 2 times.
- attend in a large group (10 or more) for 20 minutes by looking at the speaker and/or orienting his body toward the speaker or relevant stimuli.
- learn new abstract concepts in a large group (10 or more) 9 out of 10 times.
- follow social cues in the classroom, ie. peers sitting in circle/cleaning up/lining up and joins.
- vocalize an appropriate statement or comment when he is frustrated, upset, needs help or doesn't understand a concept or direction.
- always raise hands and wait to be called on when he wants to ask/answer a question or needs teacher's attention in the classroom.
- vocalize his personal needs and feelings, ie. use the bathroom, thirsty,hungry, hurt.
Any suggestion/advice would be greatly appreciated.
Hello,
I have some follow-up questions regarding the IEP social goals in my previous
post. The followings are some behavioral/social goals I requested to add to my
son's IEP (I've also added some pragmatic language goals separately), but our
case manager told me since my son will be in general education, his goals would
be the general ed goals and he will not have an IEP that includes the skills
which are taught at the kindergarten level. I don't agree with that because I
think a kindergarten teacher will not teach those social skills and monitor the
progress specifically. Since my son had the PDDNOS diagnosis and social skills
are definately his weakness, I feel very strongly to keep those social goals in
his IEP. Is it common for a PDDNOS kid mainstreamed but still has soical goals?
Any strategies/talking points I could use to convince our school district?
- make appropriate eye contact with peers and adults during various activities.
- take turns with 2 or more peers during a structured game.
- Given a 10 minutes non-structured or structured play situation, appropriately
initiate or respond to interactions with peers at least 2 times.
- attend in a large group (10 or more) for 20 minutes by looking at the speaker
and/or orienting his body toward the speaker or relevant stimuli.
- learn new abstract concepts in a large group (10 or more) 9 out of 10 times.
- follow social cues in the classroom, ie. peers sitting in circle/cleaning
up/lining up and joins.
- vocalize an appropriate statement or comment when he is frustrated, upset,
needs help or doesn't understand a concept or direction.
- always raise hands and wait to be called on when he wants to ask/answer a
question or needs teacher's attention in the classroom.
- vocalize his personal needs and feelings, ie. use the bathroom,
thirsty,hungry, hurt.
Any suggestion/advice would be greatly appreciated.
Jessica
Our mission is to create a supportive environment where people
feel enlightened, empowered and energized to seize opportunities that will
enhance the lives of children with special needs. We strive to bring
communities together and create possibilities for families and those who
support them.
Diane:
I did not check my e-mail until today. I completely understand your situation.
I hope everything will be fine. I will be thinking of little Joseph and you.
Is it hard to be a Mom with a special need child. You are such a strong Mom and
I am sure you will be OK. You did the right thing to let it out. I think that
I live close to you and I wish I could be some help. If you can think of
anything, please let me know or e-mail me at hcai20@.... love, Hong
--- In Care-to-ShareSupportNetwork@yahoogroups.com, "dianelanglamorticella"
<dianelanglamorticella@...> wrote:
>
> just when I thought we could settle into a routine, the ESY is all set up and
I even found a place to do some speech therapy with Joe Joe over the summer, my
daughter has a summer camp that she is all registered with and its paid for,
......
> Joseph has had a very high alkaline phosphatase blood test, we repeated
it, and its high, not a lab error. The result is about 6400, it should be
about 300, it was in the fall, we did some blood tests then when we were taking
him off Phenobarbital, and it was normal then. Now we did a new blood test,
actually it was a Keppra level, and we found this by accident, so we did some
x-rays and a liver ultrasound a few days ago, and the x-ray shows a lytic lesion
of boney destruction in one femur, so now we have to do a bone MRI.
> Crap, we just did an MRI of his brain on March 1. His MRI require
sedation, so now he gets to be sedated AGAIN!! and, this is not the kind of
stuff we can wait around and take care of, our pediatrician is finding a good
radiology expert he knows, and if it is an Osteoblastoma, the treatment is
surgical resection and local radiation treatments!!!
> SHIT, can we just go back to Epilepsy and Cerebral palsy please!!!!wasnt
THAT enough? so, now the schedules go down the toilet, and we drop we are doing
and run, hoping that we are treating this before it has become something that
has metastasized, and I thought it was bad that my kid cant walk or talk
right????
> DRAMA, I HATE IT!!!
> I wish I was somebody else, how did I get this far without needing
anti-depressants, or becoming a fregging alcoholic!
> We have an IEP that is good, and his teacher and school nurse are doing
great, even the bus driver is so patient about waiting for Joe Joe to get up
into the bus each morning, and now, we have to hightail our butts to go to
whichever hospital we need to so that we can take care of this. I HATE MY
LIFE!!!!
> so, if you think you have problems? just remember, things could always
be worse! at least my husband has not been laid off and we still have our
health insurance. Damn, I hate this crap, I wish the drama would go away!!!!
I have taken consolation many times in the past two years that "at least my son
does not have anything that is life threatening" and now, we possibly do.
> The pediatrician is calling another doc he knows who would be able to
help, and I asked him to line us up with a hematology and ocology doctor because
I would like to get the MRI done, and a bone marrow biopsy right away, instead
of two separate procedures, and separate doses of sedation. He asked me if I
mind going to Overlook hospital, I said, hell, I will go anywhere, that has been
my life's story for the past two years.
> Wish me luck, I have to explain this to my husband tonite when he gets
home from work. Looks like this is gonna be one hell of a summer. Now I have
to go find babysitters for Amanda so that she is not left stranded while I am at
some other fregging hospital with Joseph and my husband is trying to hold on to
his job. This sucks, I was just trying to figure out how I could get back to
work too!!!!!
> Diane LaMorticella (mother of Amanda, 5, a TD princess, and Joe-Joe,
with myoclonic epilepsy, external hydrocephalus, Cerebral palsy, mild
sensorineural hearing loss, a heart murmur, takes Keppra daily, wears SMO's for
his gait, and various developmental delays.)
>
From: mr. RAY
[mailto:mrraysings@...] Sent: Friday, May 15, 2009 9:21 PM To: MrRaySings@... Subject: JUNE 14TH NEW RECORD RELEASE PARTY/ NEW JERSEY ROCK-N-SOUL
REVUE SHOW!
JUNE 14TH NEW RECORD RELEASE
PARTY/ NEW JERSEY ROCK-N-SOUL REVUE SHOW!
Join us for the Official Record Release Party!
mr. RAY IS RELEASING HIS NEW ALBUM,
W E L C O M E T O T H E M U S I
C R O O M on June 14th 11am-1pm!
Performing songs from the new album (and ol’ faves)
with a kids chorus & band!
Special guest star, Bob Bandiera, performer/songwriter,
musician with Bon Jovi & Southside Johnny!
Bobby appears on mr. RAY's new album, as well.
GET TIX: www.mrray.com/themusicroom.htm
June 14th 11am-1pm
The Heldrich Hotel (in the ballroom)
10 Livingston Ave New Brunswick NJ
Characters from mr. RAY’s songs will be there for photo op’s,
nationally-known magician, Josh Beckerman,
face-painting, tattoos, coloring, refreshments & so much more!
Saturday, May 16 | Doors 11am | Show 11:30am
WORLD CAFE LIVE
Dodge Caravan Peanut Butter and Jams welcomes mr. RAY
3025 Chestnut St
Philadelphia, PA 19104
(215) 222-1400
www.tickets.worldcafelive.com/eventperformances.asp?evt=2954&c=45&pg=
This show will be in UPSTAIRS LIVE
Tickets: Prices include processing fee
Adults: $10
Children: $7, Ages 1-12
Free for children under the age of one!
Save money!
Save $2 off each adult ticket when you p urchase with CASH at our box office
BEFORE day of show!
Kid-friendly buffet!
A kid-friendly lunch buffet is available for purchase before and during every
PB&J show. Kids pay $7 and adults pay $10, all you can eat!
Location: Children's Entertainment Tent,
South Main Street at Lanning Avenue, Pennington Borough, NJ
Schedule of Performances:
10 a.m. - 11:00 a.m. High School Jazz Band
11:00 a.m. - noon Storytellers Denise McCormack and Carol Satz,
Garden State Storytellers League
Noon - 1:00 p.m. Music 'Round
1:00 - 2:00 p.m. Trinidad North Steel Drum Band
2:00 pm mr.Ray
Sunday, May 24
Mr. RAY celebrates Whitehouse Preparatory School!
Grand Opening/Bell Ringing Festival at the Whitehouse Preparatory School at
12:30 pm (located at 587 Ro ute 22 in Whitehouse Station 08889).
mr. RAY performs at Whitehouse School down the road about 1/4 mile (down School
Road) at 50 Whitehouse Avenue.
Free and open to the public. To register, please call (908) 534-0026 or
e-mail judy@.... People who want to attend the concert
(starting at around 3:15) will need to attend the Grand Opening/Bell Ringing
Festival at 12:30. The actual tickets will be given out at the Festival.
Sunday, May 31, 5 pm
Temple Emanu- El’s Early Childhood Education Program Presents
Mr. RAY in Concert!
756 East Broad Street, Westfield
Pre-show begins at 4 pm with activities.
Concert at 5 pm, followed by optional pizza dinner (pre-order at time of ticket
purchase).
Concert tickets - $8 by May 15th
After May 15th - $10 per person
Tickets available at Temple Emanu-El ECE office
756 East Broad Street, Westfield
For more information call 908.232.6770, ex 130
J U S T A D D E D . . .
Saturday, August 08, 2009, 8:00 PM
Jersey Shore Rock-n-Soul Revue: Power of the Trio
Presented by: Count Basie Theatre
Tickets: $49.50, $32.50, $25 - Group Rates Available
Bob Bandiera and the Jersey Shore Rock-N-Soul Revue play the music of Led
Zeppelin, The Who, The Police, U2, Cream, the Jimi Hendrix Experience, and
more. Celebrating the music created by bands whose instrumental core was an
exceptional bass, drums and guitar trio, Bobby is joined by Graham Maby (ba ss)
and Josh Dion (drums), Ray Anderson, plus vocalists Bob Burger, Layonne Holmes
and Lisa Bouchelle, with Mike Mancini (keyboards), Joe Bellia (percussion) and
a horn section!
mr. RAY has written songs for a brand-new music program called
SONGS FOR SEEDS at a fabulous indoor playspace located in the Chelsea/Flatiron
District called appleseeds.
Check out the site to sign up for classes!
www.appleseedsnyc.com/songsforseeds.html
+++++++++++++++++++++
V I S I T . . .
www.mrraymusic.com
www.new.facebook.com/profile.php?id=570828424&ref=profile
to be removed from this list, kindly type 'remove' in
the message box. all the best to you & yours. =-)
NOTE: This email (including attachments) is covered by the
Electronic Communications Privacy Act, 18 U.S.C. 2510-2521,
is confidential & may be legally privileged. It is
intended for the use of the individual or entity to
which it is addressed & may contain information that
0Ais privileged, confidential, & exempt from disclosure
under applicable law. If the reader of this email is
not the intended recipient, or agent respons ible for
delivering or copying of this communication, you are
hereby notified that any retention, dissemination,
distribution, or copying o f this communicat ion is strictly prohibited.
From: Key To me Therapy
[mailto:keytometherapy@...] Sent: Friday, May 15, 2009 2:00 PM To: Tina Rear Subject: SENSORY SATURDAY!
Attached you will
find a flyer listing the upcoming Key to Me Therapy Sensory Saturday!
dates. Please feel free to email (or print and distribute) the flyer
plus the following information that explains Sensory Saturday! to your
group members:
Key to Me
Therapy's Sensory Saturday!
Come to Sensory Saturday!
The next date is May 30 from 10:00am-11:30am . Sensory
Saturday! is a fun-filled, sensory-rich play day for children and an in-depth
information session for parents held at Key to Me Therapy in Bradley Beach. The
Key to Me staff of play therapists engages each child in beneficial games and
activities that range from swinging and jumping to finger-painting and Playdoh
in order to meet each child’s sensory needs and encourage social interaction.
While the children play, parents and professionals attend an information
session that explains how auditory stimulation improves sensory integration and
auditory processing. Sensory Saturday! is free of charge, but a
reservation is required as space is limited.
Call Key to Me Therapy to
register: 732-776-7302.
In addition, Alex
Freer, co-founder of Key to Me Therapy, has conducted information sessions for
several support groups in New Jersey and has received wonderful feedback from
each group's members. If your group is looking for a guest speaker to discuss
how sensory processing and auditory processing impact the development,
communication and socialization of children and adolescents with special
needs, please feel free to contact us. Alex offers these sessions at no
charge to your organization and will tailor the information to meet the needs
of your members.
If you have any
questions, do not hesitate to contact us. We look forward to working with you
and your group.
Diane,
I wish you luck and remember "Just Breathe" Take 3 x during the day to stop and
recognize the emotions you are feeling. Take like a minute to breathe and move
the negative emotion out. Once you do that, you will have more focus and clarity
to make next step decisions. I just learned over the years to make sure I stop,
take care of me - in order to help my children and the many others I work with
daily.
My daughter had neuroblastoma stage 1 and it was found through a chest xray ..
we did every scan under the sun and the chest xray is what found it. It took us
2 weeks in a hospital to find it and then longer to resect and recoup.
We did a resection of the tumor and did not need chemo after the resection.
Colleen Bain
--- In Care-to-ShareSupportNetwork@yahoogroups.com, "dianelanglamorticella"
<dianelanglamorticella@...> wrote:
>
> just when I thought we could settle into a routine, the ESY is all set up and
I even found a place to do some speech therapy with Joe Joe over the summer, my
daughter has a summer camp that she is all registered with and its paid for,
......
> Joseph has had a very high alkaline phosphatase blood test, we repeated
it, and its high, not a lab error. The result is about 6400, it should be
about 300, it was in the fall, we did some blood tests then when we were taking
him off Phenobarbital, and it was normal then. Now we did a new blood test,
actually it was a Keppra level, and we found this by accident, so we did some
x-rays and a liver ultrasound a few days ago, and the x-ray shows a lytic lesion
of boney destruction in one femur, so now we have to do a bone MRI.
> Crap, we just did an MRI of his brain on March 1. His MRI require
sedation, so now he gets to be sedated AGAIN!! and, this is not the kind of
stuff we can wait around and take care of, our pediatrician is finding a good
radiology expert he knows, and if it is an Osteoblastoma, the treatment is
surgical resection and local radiation treatments!!!
> SHIT, can we just go back to Epilepsy and Cerebral palsy please!!!!wasnt
THAT enough? so, now the schedules go down the toilet, and we drop we are doing
and run, hoping that we are treating this before it has become something that
has metastasized, and I thought it was bad that my kid cant walk or talk
right????
> DRAMA, I HATE IT!!!
> I wish I was somebody else, how did I get this far without needing
anti-depressants, or becoming a fregging alcoholic!
> We have an IEP that is good, and his teacher and school nurse are doing
great, even the bus driver is so patient about waiting for Joe Joe to get up
into the bus each morning, and now, we have to hightail our butts to go to
whichever hospital we need to so that we can take care of this. I HATE MY
LIFE!!!!
> so, if you think you have problems? just remember, things could always
be worse! at least my husband has not been laid off and we still have our
health insurance. Damn, I hate this crap, I wish the drama would go away!!!!
I have taken consolation many times in the past two years that "at least my son
does not have anything that is life threatening" and now, we possibly do.
> The pediatrician is calling another doc he knows who would be able to
help, and I asked him to line us up with a hematology and ocology doctor because
I would like to get the MRI done, and a bone marrow biopsy right away, instead
of two separate procedures, and separate doses of sedation. He asked me if I
mind going to Overlook hospital, I said, hell, I will go anywhere, that has been
my life's story for the past two years.
> Wish me luck, I have to explain this to my husband tonite when he gets
home from work. Looks like this is gonna be one hell of a summer. Now I have
to go find babysitters for Amanda so that she is not left stranded while I am at
some other fregging hospital with Joseph and my husband is trying to hold on to
his job. This sucks, I was just trying to figure out how I could get back to
work too!!!!!
> Diane LaMorticella (mother of Amanda, 5, a TD princess, and Joe-Joe,
with myoclonic epilepsy, external hydrocephalus, Cerebral palsy, mild
sensorineural hearing loss, a heart murmur, takes Keppra daily, wears SMO's for
his gait, and various developmental delays.)
>
thank you all for your prayers and responses! Amy, you are right, I can
handle this, we just need the stupid MRI go get done, then we will know what
needs to happen next. I am sorry about the new diagnosis for Emily, and I can
return the compliment, you are a very strong woman too!!
thanks for your prayers Cheryl, we need them too!!!
Adrienne, and Jessica, thank you so much for your offers! I will contact
you soon, when I know more about what and when we need to do things. For now,
the big deal is just doing the MRI and having the hematology/oncology doctor
check it out. I got very "assertive" with my husband last nite, and I told
him that he will just have to take one stinking day off from work, and they will
just have to get over it, for the MRI to be done. I am hoping we have an
alternate place for the MRI, maybe it could be done as an open MRI at the same
place where we did the xrays, and then I can hustle our bustle to go see the
hematology/oncology doctor. I looked on our list of insurance providers, and I
found him on there, so he is in our network, now if we can just avoid an extra
dose of sedation ........
So now I have to wait for the phone to ring, and I know from experience
that this is the worst part. Whatever the problem is, I feel better when I can
actually do something about it! That has been the story of my life for the past
two years, Joseph was diagnosed with epilepsy after a lot of effort and
investigation from me, and a pediatric neurologist. At least this time we dont
have a pediatrician who is saying its nothing. THat was very bad when we had a
doctor doing that to Joseph two years ago, it caused a delay of at least four
months, and he was seizing every day during those four months.
I have to wonder if we need to do surgery and radiation treatments if
Joseph can still do his ESY program for the summer, I dont know if he will be
considered too immunocompromised to be able to go to school, in that case, I
dont know if I can get home based instruction for him?? Maybe I would just have
to take over, put on the teacher's hat, it would not be the first time, and
probably not the last.
Oh well, now I will go back to being mother hen, and sit by the phone and
wait for it to ring!
Thank you all for your prayers and good advice! love, Diane
--- In Care-to-ShareSupportNetwork@yahoogroups.com, amykav@... wrote:
>
> Hang in there, Diane. Another diagnosis SUCKS, there's no twoways about it.
The most important thing you need to do right now is take care of yourself. Do
whatever you need to do, cry, vent, talk to others you trust will understand. I
remember the despair I felt last year when my daughter got a new diagnosis - I
was crushed, angry, and very sad. It all seemed so unfair. Didn't she already
have enough to deal with? Didn't I? How in the world would we handle this,
too?
>
> But you can handle it, Diane, you can. You're a very strong woman and your
experience in handling Joseph's challenges thus far will help you get through
this, too. It may not feel that way to you right now, and if so, just rely on
the strength of those around you to bolster you for a while. Make sure to get
whatever you need emotionally, right now, so you can gather your strength to see
this through, too. Make sure you make LIBERAL use of your support network in
whatever ways that work for you. Also, whatever the outcome of the tests that
are coming up for Joseph, see if the medical folks involved can connect you with
other parents who have faced the same or similar issues with their kids. I know
it was immesurably helpful to me to be able to speak with parents who were
further down the road with the same isue, as they could really empathize as well
as educate me and help me get a broader perspective about this new frontier.
>
> Take care. You and your family are in our prayers.
>
> Amy
>
>
> -------------- Original message from "dianelanglamorticella"
<dianelanglamorticella@...>: --------------
>
>
>
>
> just when I thought we could settle into a routine, the ESY is all set up and
I even found a place to do some speech therapy with Joe Joe over the summer, my
daughter has a summer camp that she is all registered with and its paid for,
......
> Joseph has had a very high alkaline phosphatase blood test, we repeated it,
and its high, not a lab error. The result is about 6400, it should be about 300,
it was in the fall, we did some blood tests then when we were taking him off
Phenobarbital, and it was normal then. Now we did a new blood test, actually it
was a Keppra level, and we found this by accident, so we did some x-rays and a
liver ultrasound a few days ago, and the x-ray shows a lytic lesion of boney
destruction in one femur, so now we have to do a bone MRI.
> Crap, we just did an MRI of his brain on March 1. His MRI require sedation, so
now he gets to be sedated AGAIN!! and, this is not the kind of stuff we can wait
around and take care of, our pediatrician is finding a good radiology expert he
knows, and if it is an Osteoblastoma, the treatment is surgical resection and
local radiation treatments!!!
> SHIT, can we just go back to Epilepsy and Cerebral palsy please!!!!wasnt THAT
enough? so, now the schedules go down the toilet, and we drop we are doing and
run, hoping that we are treating this before it has become something that has
metastasized, and I thought it was bad that my kid cant walk or talk right????
> DRAMA, I HATE IT!!!
> I wish I was somebody else, how did I get this far without needing
anti-depressants, or becoming a fregging alcoholic!
> We have an IEP that is good, and his teacher and school nurse are doing great,
even the bus driver is so patient about waiting for Joe Joe to get up into the
bus each morning, and now, we have to hightail our butts to go to whichever
hospital we need to so that we can take care of this. I HATE MY LIFE!!!!
> so, if you think you have problems? just remember, things could always be
worse! at least my husband has not been laid off and we still have our health
insurance. Damn, I hate this crap, I wish the drama would go away!!!! I have
taken consolation many times in the past two years that "at least my son does
not have anything that is life threatening" and now, we possibly do.
> The pediatrician is calling another doc he knows who would be able to help,
and I asked him to line us up with a hematology and ocology doctor because I
would like to get the MRI done, and a bone marrow biopsy right away, instead of
two separate procedures, and separate doses of sedation. He asked me if I mind
going to Overlook hospital, I said, hell, I will go anywhere, that has been my
life's story for the past two years.
> Wish me luck, I have to explain this to my husband tonite when he gets home
from work. Looks like this is gonna be one hell of a summer. Now I have to go
find babysitters for Amanda so that she is not left stranded while I am at some
other fregging hospital with Joseph and my husband is trying to hold on to his
job. This sucks, I was just trying to figure out how I could get back to work
too!!!!!
> Diane LaMorticella (mother of Amanda, 5, a TD princess, and Joe-Joe, with
myoclonic epilepsy, external hydrocephalus, Cerebral palsy, mild sensorineural
hearing loss, a heart murmur, takes Keppra daily, wears SMO's for his gait, and
various developmental delays.)
>
05/14/09 Autism Votes... It's time for lawmakers to listen.
Dear New Jersey Autism Advocate,
The time has finally come for individuals with autism in New Jersey to have access to treatment, no matter their bank balance or zip code. Next week we will have an historic opportunity to foster change in the way that health insurance covers autism treatment.
Hearings have been scheduled for Monday, May 18, at 10 am at the state capitol in Trenton on both Assembly Bill 2238 and Senate Bill 1651, the autism insurance reform bills. Introduced at the beginning of the legislative session last year, A. 2238 and S. 1651 require private health insurance companies to provide coverage for medically necessary autism treatments, including evidence-based behavioral interventions.
Members of the Assembly Appropriations Committee and the Senate Health, Human Services and Senior Citizens Committee will vote on these bills on Monday. We must have a strong presence in Trenton at these hearings. Please do everything you can to be there and to contact key legislators beforehand.
Here is How You Can Help:
1. ATTEND THE HEARINGS ON MONDAY, MAY 18 AT 10 am.We will need to double our efforts since simultaneous hearings will occur. Please plan to attend and ask everyone you know to attend as well.
> S1651will be heard by the Health, Human Services and Senior Citizens Committee in Committee at 10 am in Room 1, 1st Floor, State House Annex, Trenton, NJ
> A2238will be heard by the Appropriations Committee at 10 am in Committee Room 11, 4th Floor, State House Annex, Trenton, NJ.
Please wear red and help us pack both hearing rooms with parents, advocates and supporters, sending a strong message that autism is treatable and it is time for insurance to provide coverage for treatment.
2. CONTACT THE MEMBERS OF THE HOUSE AND SENATE COMMITTEES! Ask them to vote yes on the autism insurance reform bills. Be polite and persistent. Tell them your story. Make sure they know that autism is treatable and insurance should cover treatment.
> CALL the members of the Senate Health, Human Services and Senior Citizens Committee:
Sen. Loretta Weinberg (Vice-Chair) - (201) 928-0100 Sen. Diane B. Allen - (609) 239-2800 Sen. Bill Baroni - (609) (631-9988 Sen. Robert Gordon - (201) 703-9779 Sen. Thomas Kean - (908) 232-3673 Sen. Dana Redd - (856) 225-9068 Sen. Ronald Rice - (973) 371-5665 Sen. Robert Singer - (732) 901-0702 Sen. Jim Whelan - (609) 383-1388
> CALL the members of the Assembly Appropriations Committee:
Assem. Nellie Pou (Chair) - (973) 247-1555 Assem. Valerie Vainieri Huttle (Vice-Chair)-(201) 541-1118 Assem. Dawn Marie Addiego - (609) 654-1498 Assem. Peter Barnes - (732) 548-1406 Assem. Herb Conaway - (856) 461-3997 Assem. Michael Doherty - (908) 835-0552 Assem. Louis Greenwald - (856) 435-1247 Assem. Richard Merkt - (973) 895-9100 Assem. Ruben Ramos - (201) 714-4960 Assem. Linda Stender - (908) 668-1900 Assem. Samuel Thompson - (732) 583-5558 Assem. John Wisniewski - (732) 316-1885
4. FORWARD THIS ALERTto everyone you know in New Jersey. Friends, coworkers, family, teachers, therapists and neighbors can all help by contacting legislators as well. We need thousands of voices across the state speaking on behalf of those with ASD who need and deserve treatment.
This will be a hard-fought battle and we must dedicate ourselves to its success. Our loved ones with autism deserving nothing less. I look forward to seeing you in Trenton on Monday!
Hang in there, Diane. Another diagnosis SUCKS, there's no twoways about it. The most important thing you need to do right now is take care of yourself. Do whatever you need to do, cry, vent, talk to others you trust will understand. I remember the despair I felt last year when my daughter got a new diagnosis - I was crushed, angry, and very sad. It all seemed so unfair. Didn't she already have enough to deal with? Didn't I? How in the world would we handle this, too?
But you can handle it, Diane, you can. You're a very strong woman and your experience in handling Joseph's challenges thus far will help you get through this, too. It may not feel that way to you right now, and if so, just rely on the strength of those around you to bolster you for a while. Make sure to get whatever you need emotionally, right now, so you can gather your strength to see this through, too. Make sure you make LIBERAL use of your support network in whatever ways that work for you. Also, whatever the outcome of the tests that are coming up for Joseph, see if the medical folks involved can connect you with other parents who have faced the same or similar issues with their kids. I know it was immesurably helpful to me to be able to speak with parents who were further down the road with the same isue, as they could really empathize as well as educate me and help me get a broader perspective about this new frontier.
Take care. You and your family are in our prayers.
Amy
-------------- Original message from "dianelanglamorticella" <dianelanglamorticella@...>: --------------
just when I thought we could settle into a routine, the ESY is all set up and I even found a place to do some speech therapy with Joe Joe over the summer, my daughter has a summer camp that she is all registered with and its paid for, ...... Joseph has had a very high alkaline phosphatase blood test, we repeated it, and its high, not a lab error. The result is about 6400, it should be about 300, it was in the fall, we did some blood tests then when we were taking him off Phenobarbital, and it was normal then. Now we did a new blood test, actually it was a Keppra level, and we found this by accident, so we did some x-rays and a liver ultrasound a few days ago, and the x-ray shows a lytic lesion of boney destruction in one femur, so now we have to do a bone MRI. Crap, we just did an MRI of his brain on March 1. His MRI require sedation, so now he gets to be sedated AGAIN!! and, this is not the kind of stuff we can wait around and take care of, our pediatrician is finding a good radiology expert he knows, and if it is an Osteoblastoma, the treatment is surgical resection and local radiation treatments!!! SHIT, can we just go back to Epilepsy and Cerebral palsy please!!!!wasnt THAT enough? so, now the schedules go down the toilet, and we drop we are doing and run, hoping that we are treating this before it has become something that has metastasized, and I thought it was bad that my kid cant walk or talk right???? DRAMA, I HATE IT!!! I wish I was somebody else, how did I get this far without needing anti-depressants, or becoming a fregging alcoholic! We have an IEP that is good, and his teacher and school nurse are doing great, even the bus driver is so patient about waiting for Joe Joe to get up into the bus each morning, and now, we have to hightail our butts to go to whichever hospital we need to so that we can take care of this. I HATE MY LIFE!!!! so, if you think you have problems? just remember, things could always be worse! at least my husband has not been laid off and we still have our health insurance. Damn, I hate this crap, I wish the drama would go away!!!! I have taken consolation many times in the past two years that "at least my son does not have anything that is life threatening" and now, we possibly do. The pediatrician is calling another doc he knows who would be able to help, and I asked him to line us up with a hematology and ocology doctor because I would like to get the MRI done, and a bone marrow biopsy right away, instead of two separate procedures, and separate doses of sedation. He asked me if I mind going to Overlook hospital, I said, hell, I will go anywhere, that has been my life's story for the past two years. Wish me luck, I have to explain this to my husband tonite when he gets home from work. Looks like this is gonna be one hell of a summer. Now I have to go find babysitters for Amanda so that she is not left stranded while I am at some other fregging hospital with Joseph and my husband is trying to hold on to his job. This sucks, I was just trying to figure out how I could get back to work too!!!!! Diane LaMorticella (mother of Amanda, 5, a TD princess, and Joe-Joe, with myoclonic epilepsy, external hydrocephalus, Cerebral palsy, mild sensorineural hearing loss, a heart murmur, takes Keppra daily, wears SMO's for his gait, and various developmental delays.)