A very special group of ladies paved the way for me to advocate for my son, Jimmy. Jimmy has
multiple disabilities, which means that he will have a variety of complex medical issues
throughout his lifetime. He will require assistance and services to help him maintain his current
skills, and to help him acquire skills he has not yet achieved! I dedicate this web site to "Jimmy's
Angels"... Jen, Lynn, Deb, Laura, Michelle, and Ann of Children First. Without them, I would never
have had the strength to move forward as an advocate for Jimmy, and I am forever grateful to
them for empowering me. Not to mention the great strides Jimmy has taken as a direct result of
their state-of-the-art therapies, clever teaching strategies, and unique approaches! It is rare for
me to be at a loss for words, but when I consider where we'd be if they had never crossed our
path, I am speechless. Thank you, Jen, Lynn, Deb, Laura, Michelle, and Ann for guiding me,
advising me, listening to me, and being such great friends to me. Thank you also for having the
wherewithall to gauge Jimmy's health day-by-day, and for then modifying activities as needed to
accommodate Jimmy's unique, ever-changing needs. Thanks for loving him and believing in him.
Jimmy will succeed in school because of you. We are going to miss you so much!
In honor of their never-ending quest for information to help the many kids and families' lives
they touch every day, I have listed some of the most helpful information I have come across in
the last six years...thanks to the strength and encouragement of "Jimmy's Angels"! I would like
to extend an invitation for you to contact me at any time if you have a question or concern, want
advice from another parent, or even if you need a pick-me-up! I can be reached via email at:
sholmes1@twcny.rr.com.
While there are many dedicated doctors and specialists in every field, the needs of children like
Jimmy are not typically taught at local medical schools, unless of course the chosen medical
subspecialty happens to be developmental pediatrics. For this reason, I decided early on that it
would be foolish to simply accept the care that is available locally out of convenience. I have
learned that a doctor is a tool. During an initial visit, it is best to proceed as if you are conducting
a job interview to determine if the doctor will best suit your child's needs, which includes involving
the "expert-in-charge" in every medical decision...and the "expert-in-charge" is you, because no
one knows your child better! It's okay to ask questions....if your child's doctor won't answer them
in terms that you can understand, with compassion and patience, then perhaps it's time to start
looking at the resumes of other doctors! This may mean you will need to travel. Ronald
McDonald Houses offer extremely affordable housing options during doctor and hospital visits
($10 per night, or nothing if you cannot afford to pay). While Strong Memorial Hospital offers the
best care for our special children in New York State, annual visits to Kennedy Krieger would be the
best choice. After all, children with disabilities are their speciality!
Sue Ellen:)
THE MOST COMPASSIONATE, HARD-WORKING LADIES I HAVE EVER MET:
multiple disabilities, which means that he will have a variety of complex medical issues
throughout his lifetime. He will require assistance and services to help him maintain his current
skills, and to help him acquire skills he has not yet achieved! I dedicate this web site to "Jimmy's
Angels"... Jen, Lynn, Deb, Laura, Michelle, and Ann of Children First. Without them, I would never
have had the strength to move forward as an advocate for Jimmy, and I am forever grateful to
them for empowering me. Not to mention the great strides Jimmy has taken as a direct result of
their state-of-the-art therapies, clever teaching strategies, and unique approaches! It is rare for
me to be at a loss for words, but when I consider where we'd be if they had never crossed our
path, I am speechless. Thank you, Jen, Lynn, Deb, Laura, Michelle, and Ann for guiding me,
advising me, listening to me, and being such great friends to me. Thank you also for having the
wherewithall to gauge Jimmy's health day-by-day, and for then modifying activities as needed to
accommodate Jimmy's unique, ever-changing needs. Thanks for loving him and believing in him.
Jimmy will succeed in school because of you. We are going to miss you so much!
In honor of their never-ending quest for information to help the many kids and families' lives
they touch every day, I have listed some of the most helpful information I have come across in
the last six years...thanks to the strength and encouragement of "Jimmy's Angels"! I would like
to extend an invitation for you to contact me at any time if you have a question or concern, want
advice from another parent, or even if you need a pick-me-up! I can be reached via email at:
sholmes1@twcny.rr.com.
While there are many dedicated doctors and specialists in every field, the needs of children like
Jimmy are not typically taught at local medical schools, unless of course the chosen medical
subspecialty happens to be developmental pediatrics. For this reason, I decided early on that it
would be foolish to simply accept the care that is available locally out of convenience. I have
learned that a doctor is a tool. During an initial visit, it is best to proceed as if you are conducting
a job interview to determine if the doctor will best suit your child's needs, which includes involving
the "expert-in-charge" in every medical decision...and the "expert-in-charge" is you, because no
one knows your child better! It's okay to ask questions....if your child's doctor won't answer them
in terms that you can understand, with compassion and patience, then perhaps it's time to start
looking at the resumes of other doctors! This may mean you will need to travel. Ronald
McDonald Houses offer extremely affordable housing options during doctor and hospital visits
($10 per night, or nothing if you cannot afford to pay). While Strong Memorial Hospital offers the
best care for our special children in New York State, annual visits to Kennedy Krieger would be the
best choice. After all, children with disabilities are their speciality!
Sue Ellen:)
THE MOST COMPASSIONATE, HARD-WORKING LADIES I HAVE EVER MET:
HELPFUL PRODUCTS:
EleCare - nutritionally complete amino acid-based medical food/infant formula with
iron for kids with allergies to milk-, lactose-, and soy- based products
Polycose - an easily-digestible source of carbohydrate calories to aid in weight gain
Pediatric EO28 - an amino-acid based ready-to-feed formula for children with severe
food allergies, reflux, malabsorption, gastrointestinal tract impairment, and/or
Crohn's Disease (aka Inflammatory Bowel Disease). Offers an 80-90% chance of
remission of Crohn's without the use of drugs or steroids! It does not contain
proteins or peptides. Imported from the UK.
MiraLax - excellent for constipation! It does not contain sugar or sweeteners, has no
taste or odor, and it is not gritty.
PolyCitra-K Crystals - neutralizes the urine (makes it less acidic), thus helping to
prevent certain kidney stones from forming. Excellent to use in conjunction with the
Ketogenic Diet, as the one possible (but highly unlikely!) side effect can be kidney
stones.
KetoCal - a nutritionally-complete formula, which can be used to administer the
classical (4:1 ratio) Ketogenic Diet for treatment of intractable seizures in children.
HELPFUL PUBLICATIONS:
Guide for Determining Eligibility and Special Education Programs and/or Services for
Preschool Students with Disabilities
Department of Health Document Regarding the Transition of Children from the NYS
DOH Early Intervention Program to the NYS Preschool Education Program - February
2005
The Preschool Special Education Learning Outcomes and Indicators for Kindergarten
Participation
HELPFUL WEBSITES:
PubMed - look up the most up-to-date medical research on treatments, medications,
and conditions from around the world by using their search menu...this is the same
website that physicians and med students use!
clinicaltrials.gov - search for clinical trials, for any condition, being performed around
the US in a quest for new treatment options
Center for Disease Control - read about / look up information regarding viruses,
bacteria, and diseases that can effect people
eMedicine.com - using their search menu, look up any condition or ailment for reliable
information (published by experts in their respective medical fields) regarding
treatment options, differential diagnoses, prognosis, statistics, and history of the
diagnosis
We Move - a comprehensive resource for movement disorder information; highly
recommended by Dr. Hoon!
Yahoo On-Line Support Groups - this is my favorite way to find parents of children
with the same diagnosis; you can be anonymous, and visit the message boards at
your leisure. Simply type the condition in the search window, and join the group!
FREE ON-LINE CLASSES TO EMPOWER YOU AS A PARENT OR CAREGIVER OF A
SPECIAL CHILD:
New York State Office of Mental Retardation and Developmental Disabilities - offers
on-line classes to parents, teachers, therapists, and caregivers. Class offerings
cover topics such as IEPs, training regarding specific disabilities (for example, Prader
Willi), Understanding Special Education, and Understanding the Home and
Community-Based Waiver!
Hadley School for the Blind - offers on-line courses to parents and caregivers of
children with visual impairments, as well as therapists and teachers working with
students/children with visual impairments (CE credits awarded upon completion!). An
example of courses offered: Learning Through Play, Introduction to Braille, Reach Out
and Teach, Child Development/Early Childhood, and many more!
EleCare - nutritionally complete amino acid-based medical food/infant formula with
iron for kids with allergies to milk-, lactose-, and soy- based products
Polycose - an easily-digestible source of carbohydrate calories to aid in weight gain
Pediatric EO28 - an amino-acid based ready-to-feed formula for children with severe
food allergies, reflux, malabsorption, gastrointestinal tract impairment, and/or
Crohn's Disease (aka Inflammatory Bowel Disease). Offers an 80-90% chance of
remission of Crohn's without the use of drugs or steroids! It does not contain
proteins or peptides. Imported from the UK.
MiraLax - excellent for constipation! It does not contain sugar or sweeteners, has no
taste or odor, and it is not gritty.
PolyCitra-K Crystals - neutralizes the urine (makes it less acidic), thus helping to
prevent certain kidney stones from forming. Excellent to use in conjunction with the
Ketogenic Diet, as the one possible (but highly unlikely!) side effect can be kidney
stones.
KetoCal - a nutritionally-complete formula, which can be used to administer the
classical (4:1 ratio) Ketogenic Diet for treatment of intractable seizures in children.
HELPFUL PUBLICATIONS:
Guide for Determining Eligibility and Special Education Programs and/or Services for
Preschool Students with Disabilities
Department of Health Document Regarding the Transition of Children from the NYS
DOH Early Intervention Program to the NYS Preschool Education Program - February
2005
The Preschool Special Education Learning Outcomes and Indicators for Kindergarten
Participation
HELPFUL WEBSITES:
PubMed - look up the most up-to-date medical research on treatments, medications,
and conditions from around the world by using their search menu...this is the same
website that physicians and med students use!
clinicaltrials.gov - search for clinical trials, for any condition, being performed around
the US in a quest for new treatment options
Center for Disease Control - read about / look up information regarding viruses,
bacteria, and diseases that can effect people
eMedicine.com - using their search menu, look up any condition or ailment for reliable
information (published by experts in their respective medical fields) regarding
treatment options, differential diagnoses, prognosis, statistics, and history of the
diagnosis
We Move - a comprehensive resource for movement disorder information; highly
recommended by Dr. Hoon!
Yahoo On-Line Support Groups - this is my favorite way to find parents of children
with the same diagnosis; you can be anonymous, and visit the message boards at
your leisure. Simply type the condition in the search window, and join the group!
FREE ON-LINE CLASSES TO EMPOWER YOU AS A PARENT OR CAREGIVER OF A
SPECIAL CHILD:
New York State Office of Mental Retardation and Developmental Disabilities - offers
on-line classes to parents, teachers, therapists, and caregivers. Class offerings
cover topics such as IEPs, training regarding specific disabilities (for example, Prader
Willi), Understanding Special Education, and Understanding the Home and
Community-Based Waiver!
Hadley School for the Blind - offers on-line courses to parents and caregivers of
children with visual impairments, as well as therapists and teachers working with
students/children with visual impairments (CE credits awarded upon completion!). An
example of courses offered: Learning Through Play, Introduction to Braille, Reach Out
and Teach, Child Development/Early Childhood, and many more!
A Dedication To "Jimmy's Angels"...
Helpful Resources For Our Special Kids
Helpful Resources For Our Special Kids
 |  |  |  |  |
OUTSTANDING DOCTORS:
Dr. Alexander H. Hoon
Director of Phelps Center for
Cerebral Palsy at the
Kennedy Krieger Institute
(443) 923-9141
offers positive outlook, with
extremely helpful cerebral
palsy management
suggestions, and a vast
knowledge of preventative
treatment and therapeutic
options
Dr. Ewa B. Brandys
Rehabilitative Specialist
International Center for
Spinal Cord Injury at
Kennedy Krieger Institute
(worked with the late actor
Christopher Reeves)
(443) 923-9333
detail-oriented evaluation of
child's current physical
status/provides care and
equipment suggestions with
aim of improving child's
quality of life
Dr. Eric H. Kossoff
Pediatric Neurologist
Johns Hopkins Institute
(410) 955-9100
Ketogenic Diet
expert;amazing Neurologist
Dr. Joseph P. Pillion
Director of Audiology,
Kennedy Krieger Institute
(443) 923-3220
excellent resource for
state-of-the-art hearing
devices; comprehensive
audiology testing of children
with multiple disabilities,
and/or children who are
"difficult to test"
Dr. Tatsuo Hirose
Retina Specialist
Schepens Eye Institute &
Retina Center of Harvard
(617) 632-7777
retina repair on children from
all over the world; glasses for
difficult prescriptions
Dr. Howard J. Silberstein
Pediatric Neurosurgeon
Strong Memorial Hospital
(585) 273-1606 or
(585) 342-7783
shunts and shunt revisions
Dr. Jonathan W. Mink
Pediatric Neurologist
Strong Memorial Hospital
(585) 275-2808
top-notch neurologist
Dr. Gregory S. Liptak
Developmental Pediatrician
Strong Memorial Hospital
(585) 275-2986
developmental concerns /
links you with subspecialists
your child will need
Dr. Bernard A. Cohen
Pediatric Dermatologist /
President of Dermatology
Society / Founder of
dermatlas.org
Johns Hopkins Institute
(410) 955-5933
identifies and treats
difficult-to-diagnose rashes
Dr. Robert Krol
Optometrist
Aurora of CNY
(315) 422-2429
free eye exam and glasses;
paid for by the Commission
for the Blind - very useful
information related to child's
functional vision
Dr. Mina Chung
Retina Specialist
Strong Memorial Hospital
(585) 273-EYES
detailed information about
child's retina and optic nerve;
retinal photography
Dr. Irene H. Maumenee
Ophthalmologist
Wilmer Eye Institute at
Johns Hopkins
(410) 955-5214
specializes in congenital and
hereditary eye diseases
Dr. Joseph E. Losee
Pediatric Plastic Surgeon
Cleft & Craniofacial Center
Pittsburgh Children's Hospital
(412) 692-3402
top-notch plastic surgery of
face and head - his work is
astonishing
Chuck Robinson
Orthotist
Strong Orthotics & Prosthetics
(585) 341-9299
STARbands for Plagiocephaly;
custom-made AFOs
Dr. Thomas Rossi
Pediatric Gastroenterologist
Strong Memorial Hospital
(585) 275-2647
specializes in GI and nutrition
issues; works in conjunction
with:
Jeanne Nicchitta
Pediatric Nutrition Specialist
Strong Memorial Hospital
(585) 275-2647
designs meal plans for kids
with rare food allergies and
complex GI issues
Dr. Alexander H. Hoon
Director of Phelps Center for
Cerebral Palsy at the
Kennedy Krieger Institute
(443) 923-9141
offers positive outlook, with
extremely helpful cerebral
palsy management
suggestions, and a vast
knowledge of preventative
treatment and therapeutic
options
Dr. Ewa B. Brandys
Rehabilitative Specialist
International Center for
Spinal Cord Injury at
Kennedy Krieger Institute
(worked with the late actor
Christopher Reeves)
(443) 923-9333
detail-oriented evaluation of
child's current physical
status/provides care and
equipment suggestions with
aim of improving child's
quality of life
Dr. Eric H. Kossoff
Pediatric Neurologist
Johns Hopkins Institute
(410) 955-9100
Ketogenic Diet
expert;amazing Neurologist
Dr. Joseph P. Pillion
Director of Audiology,
Kennedy Krieger Institute
(443) 923-3220
excellent resource for
state-of-the-art hearing
devices; comprehensive
audiology testing of children
with multiple disabilities,
and/or children who are
"difficult to test"
Dr. Tatsuo Hirose
Retina Specialist
Schepens Eye Institute &
Retina Center of Harvard
(617) 632-7777
retina repair on children from
all over the world; glasses for
difficult prescriptions
Dr. Howard J. Silberstein
Pediatric Neurosurgeon
Strong Memorial Hospital
(585) 273-1606 or
(585) 342-7783
shunts and shunt revisions
Dr. Jonathan W. Mink
Pediatric Neurologist
Strong Memorial Hospital
(585) 275-2808
top-notch neurologist
Dr. Gregory S. Liptak
Developmental Pediatrician
Strong Memorial Hospital
(585) 275-2986
developmental concerns /
links you with subspecialists
your child will need
Dr. Bernard A. Cohen
Pediatric Dermatologist /
President of Dermatology
Society / Founder of
dermatlas.org
Johns Hopkins Institute
(410) 955-5933
identifies and treats
difficult-to-diagnose rashes
Dr. Robert Krol
Optometrist
Aurora of CNY
(315) 422-2429
free eye exam and glasses;
paid for by the Commission
for the Blind - very useful
information related to child's
functional vision
Dr. Mina Chung
Retina Specialist
Strong Memorial Hospital
(585) 273-EYES
detailed information about
child's retina and optic nerve;
retinal photography
Dr. Irene H. Maumenee
Ophthalmologist
Wilmer Eye Institute at
Johns Hopkins
(410) 955-5214
specializes in congenital and
hereditary eye diseases
Dr. Joseph E. Losee
Pediatric Plastic Surgeon
Cleft & Craniofacial Center
Pittsburgh Children's Hospital
(412) 692-3402
top-notch plastic surgery of
face and head - his work is
astonishing
Chuck Robinson
Orthotist
Strong Orthotics & Prosthetics
(585) 341-9299
STARbands for Plagiocephaly;
custom-made AFOs
Dr. Thomas Rossi
Pediatric Gastroenterologist
Strong Memorial Hospital
(585) 275-2647
specializes in GI and nutrition
issues; works in conjunction
with:
Jeanne Nicchitta
Pediatric Nutrition Specialist
Strong Memorial Hospital
(585) 275-2647
designs meal plans for kids
with rare food allergies and
complex GI issues