Special Needs Resources, Information, Abbreviations and Book Recommendations

[JessicaS]

This is a list of resources that have been contributed by the members here at Mothering.

If you would like to offer a resource for this list please submit it through QueenoftheMeadow, BookGoddess or abimommy.


ADHD

www.ahdhnews.com - Pattyla


Allergy


Red Dye Allergy

http://health.groups.yahoo.com/group/NoRedDye/ - Froggie



Apraxia
www.apraxia-kids.org
For apraxia, a great site and they have a listserv that includes both professionals and parents and is very courteous and well informed. -addax




ASD
http://www.asdtalk.com/
Brand new online community run by a Canadian mom and dad who have a son with moderate to severe autism. Just went live 2 days ago. - Finch



Aspergers Syndrome
www.aspergersyndrome.org
Asperger's Syndrome, PDD-NOS, and high-functioning autism is the OASIS message board. It's a big board with many knowledgable people. It was created by Barb Kirby, the author of a great book called, "The OASIS Guide to Asperger's Syndrome." This website has lots of links and book recommendations. You don't have to wait long for responses to your posts on this board, and there are several folders that cover topics like education and IEPs, girls with Asperger's, dietary aspects, medications, and more. There are many parents on this board whose kids haven't been formally diagnosed yet or are just told "a mild form of PDD." (So it's not just for parents of kids diagnosed with Asperger's Syndrome.) - momofcutie




Autism
http://adventuresinautism.blogspot.com/
It's just a blog, but she is very much into the activism aspect of autism, and she posts a LOT of informative articles and links to legislation. I enjoy reading it.

http://health.groups.yahoo.com/group/parenting_autism/
EXTREMELY active, very supportive. Great resource.
-Finch

Social stories
http://www.frsd.k12.nj.us/autistic/S...al_stories.htm

Stories with pecs
http://www.setbc.org/pictureset/
I really like this one. Just click on the picture to get what story you need. the cool thing is that it's offered in pdf and boardmaker.

Free pecs
http://trainland.tripod.com/pecs.htm
Just scroll to the bottom to find the pecs. You have to just print out the whole page.

Sites with lots of other site links
http://www.angelfire.com/pa5/as/asteachersites.html


Autism Acceptance/Neurodiversity

MDC Thread
http://www.mothering.com/discussions...d.php?t=926323


Cancer

http://listserv.acor.org/archives/


Charts/Developmental Delays
http://www.lifeasmommy.com/index_files/devlinks.htm
Links to milestone charts, developmental delays, etc. - peekyboo

Behavioral Issues

Another helpful site for those looking to handle behavior problems and place the healing in the hands of the parents is: www.nurturedheart.com - alisonum

Biomedical Resource Thread At MDC

http://www.mothering.com/discussions...d.php?t=863754



Chromosome Deletion

chromosome deletion outreach
www.chromodisorder.org - zoltenfirman


Chromosome Disorders

http://www.chromodisorder.org/CDO/ - bri276


Chromosomal Mutations

www.rarechromo.org - JenniferLovie


Congenital Heart Defects


www.littlehearts.net - pimms


Cornelia de Lange Syndrome

http://www.cdlsusa.com

CdLS Support Group:http://groups.yahoo.com/group/cdls-kids/ - ~meribeth~


Cri Du Chat syndrome
The 5p- society
www.fivepminus.org - zoltenfirman

the 5p- yahoo group
http://groups.yahoo.com/group/Cri-Du-Chat_Syndrome/ - zoltenfirman



Diabetes

http://www.childrenwithdiabetes.com

Diabetes Information for Classmates
http://www.bellaonline.com/articles/art32541.asp

Down Syndrome and Diabetes Dual Diagnosis
http://www.bellaonline.com/articles/art32543.asp - PNWmom



Diaphragmatic hernia
www.cherubs-cdh.org.
For diaphragmatic hernia - is great source of information and there are some great people there. - addax


Down Syndrome
This site has a lot of useful information,with a large forum base.Very active discussion boards
www.downsyn.com



Epilepsy

USA
http://www.epilepsy.com/
Great Britain
and http://www.epilepsy.org/uk - Hanny


Esophageal Atresia and/or Tracheoesophagel Fistula
www.eatef.org - moongazer


Hip dysplasia and clubfoot

A great site for hip dysplasia is www.hip-baby.org

& for clubfoot: http://www.uihealthcare.com/topics/m...eet/index.html - mlnelson76


Hydrocephalus

http://www.hydroassoc.org/

http://www.ninds.nih.gov/disorders/h...rocephalus.htm

http://www.hydrocephalus.org/ - Ambrose

http://www.fetalhydrocephalus.com - eclecticmama



Hypotonia
http://messageboards.ivillage.com/iv-ppchdhypoton/
A nice message board for kids with hypotonia -jackson's mama


www.infantilespasms.com/forum/index.php

If for some reason that link doesn't work just go to

www.infantilespasms.com and there's a link to the forum. --gsmom



Joubert Syndrome
Joubert Syndrome support group: http://health.groups.yahoo.com/group/joubertsyndrome/ - jessjillbolyer


Kabuki Syndrome aka Niikawa Syndrome aka Kabuki Makeup Syndrome


http://www.kabukisyndrome.com/


Learning Disabilities
www.schwablearning.com is a great site if your child has learning disabilities. there are some great articles on the site and some of the parents really know their stuff. has been invaluable to me. -Oh the Irony


Childhood Leukemia

http://www.all-kids.org/ - supervee


Lipomyelomeningocele


http://neurosurgery.ucla.edu/Diagnos...tricDis_8.html

http://www.medcyclopaedia.com/librar...ningocele.aspx

Helpful site - (great info but this site has alot of broken links)

http://www.lfsn.org/welcome.htm - KatWrangler

Malrotation of the Intestines with Volvulus
http://health.groups.yahoo.com/group...ationvolvulus/ - USAmma


The yahoo list is available for archive purposes, but the malrotation group has moved to the following subforum:

http://www.parent-2-parent.com/forum...play.php?f=132 - Treasuremapper

Mastocytosis
Pediatric Systemic Mastocytosis

http://www.mastokids.org/ - Satori

Microphthalmia
support group:
http://groups.yahoo.com/group/Microphthalmia/ - jessjillbolyer

Mitochondrial disorders

www.umdf.org - gsmom

Neurofibromatosis

http://www.ctf.org/

They also welcome people with concerns rather than diagnoses or with conditions sometimes found with NF (optic gliomas or non-malignant tumors, especially of the brain or spinal cord) - JohannasGarden

Neural Tube Defects-

http://www.chg.duke.edu/diseases/ntd.html


Omphalocele
This one is for parents/friends/family members/etc of babies with Omphalocele. They also touch on Gastroscecis and other abdominal issuse. We have had a few Tetrology of Fallot in there but not sure how much. I don't go on there much as they move quite fast and I don't have the time to keep up.

http://health.groups.yahoo.com/group/EmailMOOs/


Optic Nerve Hypoplasia, Septo Optic Dysplasia
http://groups.google.com/group/sod-l/


Optic Nerve Hypoplasia, Septo Optic Dysplasia.


http://www.focusfamilies.org/focus/
The website for FOCUS Families who run this email support group. - lilskid


Pierre Robin Sequence AKA Syndrome

Pierre Robin Network; and a Yahoo Group - AndVeeGeeMakes3


Prenatal Diagnosis
http://www.aplacetoremember.com/Prob...ncies/Sharing/
for anyone facing a very scary prenatal diagnosis with a low survival rate is A Place to Remember. -addax



REFLUX for babies

www.reflux.org
www.infantreflux.org - amycurlygirl

Child's Diagnosis: Severe Reflux/Eating Aversions
Board: www.refluxinchildren.com
It is an awesome, suppportive board!! It's more for severe reflux but they do have an infant reflux board, too. They have formsu for tube-feeding, feeding aversions and issues, and they have expanded out to include forums for many other conditions. They even have one for adaptive equipment and undiagnosed disorders. The parents there are very caring and it's a good place to vent or to get ideas. -USAmma


http://infantrefluxdisease.com/ - onceagain



Selective Mutism

http://www.selectivemutism.org/

Miss Information


Sensory Processing Disorder


Sensory Processing Disorder Foundation: http://www.spdfoundation.net/index.html

Sensory Processing Disorder: http://www.sensory-processing-disorder.com/

Sensory Nation: http://www.sensorynation.com/

The Out of Sync Child
http://www.out-of-sync-child.com/


SID/SPD
http://groups.yahoo.com/group/SID-DSI_AllAboutKids/
Run by two great women with kids who have moderate to severe SID/SPD, and extremely welcoming and supportive. My lifeline when ds was first diagnosed. - Finch


Special needs equipment exchange group:
http://groups.yahoo.com/group/SpecialChildExchange/ - jessjillbolyer

Its a durable medical equipment exchange for families in Kansas.

Also, they are going to revamp their website to include the KC, KS and the KC, MO area


http://kidsdmexchange.org/home


Spina Bifida

Spina Bifida Association -

http://www.sbaa.org/site/c.gpILKXOEJ...n_Web_site.htm


Tourette's Syndrome

http://www.tsa-usa.org/ - ~mama jewel~



Tethered Spinal Cord

http://www.ninds.nih.gov/disorders/t...hered_cord.htm - KatWrangler




Thanks to all the members who have contributed to this resources thread!

If you would like to offer a resource for this list please submit it through QueenoftheMeadow, BookGoddess or abimommy.

[JessicaS]

Here are some abbreviations that are used in the Special Needs community. Standard abbreviations are not included here, but you can find them in the Abbreviations, Acronyms, Emoticons. This is an ever growing list, if you know of something that has not been included please post it HERE.

ABA: applied behavioral analysis
ASD - autistic spectrum disorder
ASD- Atrial Septal Defect (heart defect)
AS - aspergers syndrome
AFO - Ankle Foot Orthotic
ADD Attention Deficit Disorder
ADHD Attention deficit and hyperactivity disorder

CP: cerebral palsy
CPSE: committee on preschool special education
CAPD - central auditory processing disorder
CdLS=Cornelia de Lange Syndrome

DAFO - Dynamic Ankle Foot Orthoses
Ds: Down syndrome
DSI- dysfunction in sensory integeration. this is the newest name for SID.


ECSE- Early Childhood Special Educator
EI- Early Intervention
EE eosinophilic esophagitis
EOS eosinophilic disorder

FTT- Failure to thrive

GERD: Gastroesophageal reflux disease

HFA = high functioning autism

ISC: inital service coordinator
IEP: individualized education plan
IFSP: initial/individualized family service plan
ITS- Infant/Toddler Services (could just be the local name, I don't know)

JPA tumor: juvenile pilocytic astrocytoma tumor

LMC - Lipomyelomeningocele

MR - Mental Retardation

NT=neurotypical (ie, non-autistic)
NLD/NVLD=Non-verbal learning disorder

OT: occupational therapy
OSC: ongoing service coordinator
OCD Obsessive compulsive disorder
ODD Oppositional Defiant disorder

PT: physical therapy
PDD - Pervasive Development Disorder
PDD-NOS= Pervasive Developmental Disorder- Not Otherwise Specified

RDI: relationship development intervention

ST: speech therapy
SID - sensory integration dysfunction
SPD - sensory processing disorder
SMO - Supra-Malleolar Orthosis (a type of brace)
SN - special needs.
SB - Spina Bifida
SLP - Speech Language Pathologist (Speech Therapist)

TCS - Tethered Cord Syndrome
TOF - Tetralogy of Fallot (heart defect)
VSD- Ventricular Septal Defect (heart defect)
COA - Coarctation of Aorta (heart defect)

[JessicaS]

Books

Autism and the God Connection by William Stillman

A Child's Journey Out of Autism by Leeann Whiffen

Healing The New Childhood Epidemics: Asthma, ADHD, Autism, and Allergies by Dr. Kenneth Bock

Be Quiet, Marina! by Kristen DeBear


The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened with Autism by Patricia Stacey

The Complete IEP Guide: How to Advocate for Your Special Ed Child by Lawrence M. Siegel

Conquering Autism: Reclaiming Your Child through Natural Therapies by Stephen B. Edelson, MD

A Drug-Free Approach to Asperger Syndrome and Autism: Homeopathic Care for Exceptional Kids ~ Judyth Reichenberg-Ullman, Robert Ullman and Ian Luepker

Getting Rid of Ritalin: How Neurofeedback Can Successfully Treat ADD Without Drugs by Robert W. Hill, Ph D, and Eduardo Castro, MD


In Time and With Love: Caring for Infants and Toddlers with Special Needs by Marilyn Segal, Wendy Masi and Roni Leiderman

Like Sound Through Water: A Mother's Journey Through Auditory Processing Disorder by Karen J. Foli

Managing the Gift: Alternative Approaches for Attention Deficit Disorder by Dr. Kevin Ross Emery

Nature's Ritalin for the Marathon Mind: Nurturing Your ADHD Child with Exercise
by Stephen C. Putnam


The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Kranowitz

Prozac Free: Homeopathic Medicine for Depression, Anxiety, and Other Mental and Emotional Problemsby Judyth Reichenberg-Ullman and Robert Ullman

Rage Free Kids: Homeopathic Medicine for Defiant, Aggressive, and Violent Children by Judyth Reichenberg-Ullman and Robert Ullman

The Ritalin Fact Book: What Your Doctor Won't Tell You About ADHD and Stimulant Drugs by Peter R. Breggin, MD


Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller


Smiling at Shadows: A Mother's Journey Raising and Autistic Child by Junee Waites and Helen Swinbourne

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi

What's Wrong With Timmy? by Maria Shriver

When the Brain Can't Hear: Unraveling the Mystery of Auditory Processing Disorder (APD) by Teri James Bellis, PhD.


Without Ritalin: A Natural Approach to ADD by Samuel A. Berne

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities by Stanley D. Klein, PhD. and Kim Schive