November 8th PACC Meeting

Upcoming PACC Meeting -- Monday October 10, 2010

What we're here for....

We received a comment today asking for support and information.

The Waligora family down in Naples, FL is reaching out to see if they can make their world a little smaller by finding other families who may have endured the things that they are experiencing right now.

I had a chance to look at their blog, which tugged at my heart and brought tears to my eyes. In one of her posts, Holly puts into words what she hears her little baby, Brooke, saying as she watches her in the hospital. Holly's words and posts are honest and comical at times. If anyone has anything they want to say or any information they want to give to support this family, feel free to write a post, leave a comment here or on their BLOG (website also listed below).

Eric Waligora's comment:

"Hi there. I'm writing to anyone who is familar with a child with DS who has had a heart defect repair. Right now my wife and 4 month old are in All childrens in ST Petersburg, FL having a complete av canal repair. Anyone who can show support please visit her blog at http://waligorafam.blogspot.com " 

Thanks for reading!

BL

Activities

http://www.carolinaparent.com/


I found this website. It's great! It provides lots of information about the different activities going on around the Triangle! It has information about camps, educational activities, fundraisers, parent groups, and much more! Check it out!


Holly

ASHA & MAY= BETTER SPEECH AND HEARING MONTH!!!

For those who do not know, the American Speech-Language-Hearing Association (ASHA) is the Speech-Language Pathologists and Audiologists national organization & May is "Better Speech and Hearing Month"!! I thought this website would be great for anyone to look at; the website is from ASHA.org and it is the link to the Better Speech and Hearing Month part of their website! On this page they have great resources for parents to read through and other helpful information that ASHA provided about speech, language, and hearing disorders. Here it is:

http://www.asha.org/bhsm/


Posted by: Anna Bryant

ADHD Resource

Here is a resource I found for individuals with ADHD. I have observed a lot of children in the school that I interned at with ADHD and thought it would be a good topic to find information on. This website appears to offer a lot of great resources!! There is information for just about anything :)

http://www.chadd.org/


Posted by: Anna Bryant

GERD & LPR

I recently did a presentation on Gastroesophageal Reflux (GERD)and Laryngopharyngeal Reflux (LPR). I thought that the following website would be helpful for parents who think their child might have reflux!

http://www.askdrsears.com/html/10/T106004.asp


http://www.choa.org/default.aspx?id=4405

http://www.entnet.org/HealthInformation/GERD-and-LPR.cfm

http://www.entnet.org/HealthInformation/laryngopharyngealReflux.cfm

http://www.entnet.org/HealthInformation/pediatricGERD.cfm

http://www.entozarks.com/docs/LaryngopharyngealReflux.pdf

http://en.wikipedia.org/wiki/GERD

http://en.wikipedia.org/wiki/Laparoscopic_surgery

http://findarticles.com/p/articles/mi_m0BUM/is_9_81/ai_92281759

http://findarticles.com/p/articles/mi_m0BUM/is_10_87/ai_n31126163/?tag=content;col1

http://www.gastro.vcu.edu/patients/education/digestivedisorders/gastroesophageal_reflux_disease_files/image001.gif/
 
http://www.gerd.com/


http://www.gerd.com/consumer/treatment-gerd.aspx

http://www.lahey.org/PDF/VoiceCenter/VoiceCenter_LPRFactSheet.pdf

http://www.mayoclinic.com/health/esophagitis/DS01154

http://www.medicinenet.com/gastric_emptying_study/article.htm

http://www.medicinenet.com/gerd_in_infants_and_children/article.htm

http://www.med.nyu.edu/voicecenter/conditions/voice/larny_reflux.html

http://pediatrics.about.com/od/acidreflux/a/0707_reflux_rx.htm

http://www.refluxissues.com/ms/guides/gerd_treatments/main.html

http://www.speechpathology.com/articles/article_detail.asp?article_id=258

www.surgery.uthscsa.edu/generalsurgery/nissen.jpg
 
http://www.ucdvoice.org/lpr.html


http://www.uthscsa.edu/oto/lpr.asp

http://www.vasurgery.com/images/general_surgery/gerd.gif

http://video.about.com/heartburn/GERD.htm

http://www.voiceinstituteny.com/Voice/pdf/I%20PDF%20REFLUX/Rx%20Gum%20Chewing.pdf

http://www.voiceinstituteny.com/Voice/pdf/PDF%20III/Prevalence%20of%20esophagitis....pdf

http://web1.tch.harvard.edu/views/august07/treating_acid_reflux_in_infants.html

http://www.webmd.com/heartburn-gerd/tc/gastroesophageal-reflux-disease-gerd-medications

http://www.youtube.com/watch?v=jCcng4gG9AY
http://www.youtube.com/watch?v=URn7f83zpa4&NR=1
 
 
Posted by: Anna Bryant

Cerebral Palsy

Here is some general information that I found about cerebral palsy. The United Cerebral Palsy (UCP) is a wonderful source of information!

Definition: a loss of deficiency with motor control, with involuntary spasms c/b permanent brain damage; non-progressive disorder
Stats: 500,000 individuals affected by CP in US
Types of CP
Mixed: any combination of spastic, athetoid, and ataxic CPs
Ataxic: balance and coordination are impaired
Spastic hemiplegia: muscles are rigid, posture may be abnormal, and fine motor is impaired (all on one side of the body)


Reference
http://www.ucp.org/

Holly McDonald

Awesome website for kids!

Hello everyone!  I just wanted to share a wonderful website with you:  http://www.starfall.com/.  Starfall is tons of fun for kids.  I've used it with kids from ages 2-8, both typically developing and those with special needs.  Starfall has interactive games and activities that reinforce phonemic awareness.  Starfall is a great literacy resource!
Emily Vonderhaar

Importance of Early Literacy, by Emily Vonderhaar


Believe it or not, the daily activities of preschoolers is serious business! Songs, stories, games, and rhymes are all important parts of your child’s literacy development. And guess what? You have a huge role in your child’s future literacy success!

Child development specialists warn that the importance of children’s early literacy development cannot be overstated. Children’s success in school and later in life is, to a great extent, dependent upon their abilities to read and write. Reading, writing, and speaking development is interrelated and concurrent.

Following are some tips and strategies to help parents and caregivers provide a rich literacy experience for preschoolers.

Supplies for a Literate Environment:

*Children’s books

*Numerous representations of ABC’s

Ex) blocks, posters, puzzles, stickers

*Writing materials like paints and crayons

*Paper

*Adult printed materials, such as bills,

cookbooks, magazines, and books


Great Activities for Literacy Development

*Read with your child daily from infancy

*Let your child see you reading

*Encourage child to add printed materials to

pretend play (grocery lists, menus)

*Rhyming, songs, and word play

*Trips to library and museums

*Provide frequent opportunities to

experiment with drawing and coloring

*Write down your child’s made-up stories,

or letters to friends and family


Strategies to Use While Reading with Your Preschooler:

*For infants, name objects in book

*Make predictions about the story

*Point out and explain new vocabulary

words

*Ask who, what, when, where and why

questions about the story

*Point at words as you read them


To achieve literacy children must first acquire many basic concepts, including awareness of functionality of printed materials and awareness that sounds make up words. A child’s experience with story reading, discussions about books, listening comprehension, and writing is crucial to early literacy. Children learn through active engagement, so your involvement is vital to your child’s development!

This is a great collection of resources which includes contact information for practices and agencies that use augmentative and alternative communication.  Thanks, Emily Vonderhaar

The Center for Literacy & Disability Studies
301A S. Columbia St., Suite 1100 Bondurant Hall
Chapel Hill, NC 27599-7335

Web Address http://www.med.unc.edu/ahs/clds/index.html
Phone (919) 966-8828
Contact Person Dr. Karen Erickson, Director

Services provided: Training and AAC Resources / Seminars
Population Served:  All Population

North Carolina Division of Services for the Blind
307 Ashe Avenue
Raleigh, NC 27606

Web Address http://www.dhhs.state.nc.us/dsb/
Phone (919) 733-4234 Voice/TTY

Contact Person: Cecil Delbridge (cecil.delbridge@ncmail.net)


Services Provided: Assessment, Training, Job Site Evaluation

Population Served: Visually Impaired Individuals, All ages

Janus Development Group, Inc.
112 Staton Road
Greenville, NC 27834

Web Address http://www.janusdevelopment.com/about.htm
Phone: (252) 551-9042

Contact Person: Customer Service

Services Provided: Development and sales of SpeechEasy and WAFT Wheelchair Treadmill
Population Served: All Ages

Carolina Living and Learning Center
Address: Physical location in Pittsboro, NC, part of UNC-Chapel Hill TEACCH program

Web Address www.teacch@unc.edu
Phone (919) 542-0978

Contact Person: Nancy Reichle

Services Provided:  Residential treatment facility that provides communication, cognitive, and behavioral therapy and vocational training.

Population Served: Adults with diagnosis of mental retardation and/or developmental disabilities

Miller Center, North Carolina Assistive Technology Program
131 Miller Street
Winston-Salem, NC 27103

Web Address http://www.ncatp.org/index.htm
Phone / Fax 1-336-716-8030

Free Services Device demonstration, device loan, device reutilization, Training / Technical Assistance, Public awareness.

Fee-based Services Assistive Technology Assessment, Community based assessment, feature matching & device trial, Training on specific devices / software, Consultation Services, workshops / seminars, Training

Services Include: Vision; Hearing; Speech Communication; Learning, Cognition, and Developmental; Mobility, Seating, and Postitioning; Daily Living; Environmental Adaptations; Vehicle Modification and Transportation; Computers and Related; Recreation, Sports, and Leisure

Population Served: Children, adults, and older adults with disabilities and their families, older adults experiencing difficulty with daily activities, professionals in disability related fields such as health care, social services, education, rehabilitation, or other human services, employers and employees in private and public settings

North Carolina Central University Speech and Hearing Clinic
1801 Fayetteville St.
Durham, NC 27707

Web Address www.nccu.edu


Phone (919) 530-7473

Contact Person: Zaneta Ponton

Free Services: Diagnosis, voice therapy, individual treatment, neurogenic aphasia group therapy, Assistive Technology for Infants and Preschoolers Project, Hablemos Spanish/English bilingual preschool, accent modification, AAC device loan program

Population Served: Birth to adult with communication needs

Bonnie Center, North Carolina Assistive Technology Program
 Harris Regional Hospital
68 Hospital Road
Sylva, NC 28779

Web Address http://www.ncatp.org/index.htm
Phone 1-828-631-9461

Contact Person None listed

Free Services: Device demonstration, device loan, device reutilization, training / technical assistance, public awareness.

Fee-based Services Assistive technology assessment, community based assessment, feature matching & device trial, Training on specific devices / software, consultation services, workshops / seminars, training

Services Provided:  Vision; hearing; communication; learning, cognition, and developmental needs; mobility, seating, and Postitioning; Daily living; environmental adaptations; vehicle modification and transportation; computers,

Population Served: Children, adults, and older adults with disabilities and their families, older adults experiencing difficulty with daily activities, professionals in disability related fields such as health care, social services, education, rehabilitation, or other human services, employers and employees in private and public settings

Powerpoint on Down Syndrome

This is a presentation that my group presented in class on Down Syndrome. Here is the information from the powerpoint:

History of Down Syndrome (DS)

• Evidence dating back to the 7th century A.D. that showed physical features of an individual with Down Syndrome. 
• Portrait paintings from the 1500’s that displayed children with a Down Syndrome-like facial appearance. 
• Dr. John Langdon Down in 1866 published the first complete physical description of Down Syndrome.
• Researchers identified the chromosomal abnormality that causes Down Syndrome in 1959.

Prevalence

• 13.7 per 10,000 births 
• Maternal age is linked to Down Syndrome.
• Trisomic Down Syndrome occurs more in males. (59% males and 41% females) 
• Translocation Down Syndrome occurs more in females. (74% females and 26% males) 
• *The etiology of this is unknown.

 At age 20 the prevalence is 1 in 2,000 and at age 45 the prevalence is 1 in 20. (trisomy 21)

No increased risk if there is an increase in maternal age if it is the translocation abnormality.

1/3 of persons with the translocation down syndrome inherit it from a parent who is a carrier. Chromosomal analysis can ID people that are carriers of the translocation.

Early Intervention

•  Women that are 35 years + are offered prenatal diagnostic testing for DS. (during 1st and 2nd trimesters).
• Genetic counseling 
• Easily ID at birth
• Genetic counseling- if the pregnancy is continued then cardiac planning parental accommodations and appropriate medical evaluations of the infant is provided.
• Easily ID at birth because of the physical features present.

Most Common Characteristics of DS

• 3 palm print patterns.
• Brush field spots (colored speckles in the eye lid of the eye)
• Ear length 
• Neck skin fold 
• Widely spaced first toes

 Chromosomal Findings

• Trisomy 21 (95% of individuals with Down Syndrome)
• Translocation (4% of individuals with Down Syndrome)
• Mosaicism (1% of individuals with Down Syndrome)

 Trisomy 21 is a result of a nondisjunction usually in meiosis 1 of the egg.

Translocation is the attachment of the long arm of an extra chromosome 21 to chromosome 14, 21, or 22.

Mosaic Trisomy is when some but not all cells have the defect. This is usually from nondisjunction during mitosis of the fertilized egg.

The only difference in children with Mosaic Down Syndrome is that they typically score higher on IQ test.

Chromosome 21

• Sequencing on this chromosome contains more than 400 genes.
• The sets of genes located on this chromosome are involved in specific metabolic pathways and biological systems.

Ex. Of sets of genes located on chromosome 21: 10 genes influence the structure and function of the CNS.

Overexpression of one of the genes might result in early onset of Alzheimer’s in individuals with Down Syndrome.

Malformations caused by Trisomy

• Incomplete rather than deviant development of the embryo.
• Atrial septic defect, or ventrical septic defect.
• Tracheoesphogeal fistula 
• Brain tissue in individuals with Down Syndrome can have multiple developmental abnormalities.

 ASD-VSD is when the heart is normally formed by the walls separating the two sides of the heart may not close completely

TF- the separation of the trachea and the esophagus may be incomplete.

Brain Tissue Abnormalities include-delayed myelination, fewer neurons, decreased synaptic density and decreased acetylcholine neurotransmitter receptors.

Medical Complications

•   Congenital Heart Defects (endocardial cushion defect, ventricular septal defect, artrial septal defect)
• Sensory Impairments (vision and hearing problems)
• Overweight (sometimes leads to a metabolic syndrome)
• Short Stature 
• Orthopedic Problems (atlantoaxial subluxation, partial dislocation of upper spine, torticollis, and juvenile rheumatoid arthritis)
•  Dental Problems (periodontal disease & malocclusions)
• Gastrointestinal Problems
• Epilepsy
• Hematologic Disorders
• Skin Conditions

 Gastronintestinal problems include symptoms in newborn poor feeding, vomiting, or aspiration pneumonia. GERD is known to be common in children with DS. Esophagealatresia an abnormal connection between the trachea and the esophagus. Celiac disease has been found in 1%-7% of children with DS.

Epilepsy 6% is more common in DS than in general population………..55% of all seizures are tonic-clonic, 13% infantile spasms

Seizures most common in in <3y/o

62% of all seizures have an identifiable cause; most common are: infections and hypoxia resulting from congenital heart dz.

Hematologic Disorders almost every cellular element of hematopoietic (blood) system has been found to be at risk for abnormality in DS

A complete blood count is indicated at birth for infants with DS

Few abnormalities lead to serious problems

1 in 150 children with DS will develop either acute myelognous leukemia or acute lymphoblastic leukemia during their lifetime

Skin Conditions by puberty ½ of all ind. Will expereince atopic dermatitis (eczema), chelltis (inflammation of the lips), ichtyosis 
 
Neurodevelopment and Behavior

•  Hypotonia and associated delayed gross motor development.  
• First 2 years of life: appear to have less cognitive impairment (compared to later in life) 
• By 2 years of age: significant language delays are evident. Receptive language is better than expressive. 
• 85% of children with DS have IQ scores that range from 40-60 (mild-moderate intellectual disability)

 *hypotonia & delayed gross motor development: most children with DS don’t sit up until 11 mos, don’t walk until 19 mos…developmental milestones in boys with DS are usually reached slightly later than girls with DS

*2 years (significant language delays are evident): children w/ DS don’t speak their 1st word until 18 mos of age…even when children w/ DS speak in sentences, problems w/ intelligibility interfere w/ effective communication…THEREFORE, speech tx focuses on expressive language and intelligibility for many years

*psychology testing (85% of children with DS): even though these children generally have poor verbal short-term memory skills, their visual-motor skills are relatively STRONG!

*behavior: study discussed that 29% of children with DS have behavior or psychiatric disorders, such as, aggressive behavior, ADHD, oppositional disorder, stereotypic behavior, elimination difficulties, ASDs, and Tourette syndrome….2nd study discussed children with DS having ASDs…some ind. with DS experience deterioration of cognitive or psychological function in adolescence, which manifests in worsening behavior…could be attributed to unrecognized hypothyroidism or depression…adults with DS can also have a decline in function, such as, mental health disorders (anxiety, depression, or obsessive-compulsive disorder…more than ½ …Alzheimer’s counts for 1/5th)

Medical Evaluation

•  First 6 months of life, all children with DS need an ophthalmologic evaluation. 
• Infants with DS who fail their newborn hearing screen will need a hearing evaluation by 3 months of age.
• Polysomnogram should be performed there is suspicion of sleep apnea.
• Infants with DS need to be screened for congenital hypothyroidism, and receive thyroid function tests at 4-6 months of age, at 1 year, and annually thereafter.
• Should be screened for celiac disease at 30 months of age.
• Children with DS should have their growth monitored.
• Daily cleaning of teeth should begin as soon as their teeth come in. 
• Evaluation of children for atlantoaxial subluxation by X-ray studies is usually done on entrance to preschool and sometimes prior to elective surgery. 
• Screenings for diabetes and leukemia are not routinely done, it is appropriate to lower the threshold for evaluation for individuals with DS

Medical Treatment

• Parents of a newborn with DS should be provided with a balanced view of the condition.  
• Up-to-date print materials on infants with DS. 
• Early intervention programs are needed for children with DS. 
• Educational program of a child with DS should provide the optimal environment for learning.
• A visual approach should be used with children with DS. 
• Alternative and complementary therapies to improve cognitive function and appearance. 
• Study: adults with DS treated with donepezil show improvement in language and dementia scores

Prognosis

• Prognosis for a productive and positive life experience for individuals with DS has increased substantially from the 1970s .
• Children with DS were the first children with disabilities to be “mainstreamed” into public schools.
• Life expectancies have improved since 1980s, more than half of individuals with DS will survive into their 50s, and that 13.5% will be alive at age 68 years.
• Introduction of supported employment (1980s) has allowed adults with DS to hold jobs with improved pay and benefits, and better working conditions.

Reference:
Batshaw, M. (2007). Children with disabilities. (6th Edition). Baltimore, MD: Paul H Brookes. p 263-271

Posted by: Anna Bryant

Autism Support

http://www.durham-autism.org/


This is a link to the Autism Society of NC the Durham County Chapter. This is a great place for family support. They hold meetings on the 4th Tuesday of every month. There is an abundance of information located on this website!

Posted by:  Holly McDonald

Autism resource on CNN!

Here is an article posted in the Health section of CNN online.

"10 Sites Worth Checking Out If Your Child Has Autism" by Jennifer Bixer and John Bonifield, CNN


(click on the article title to go to the site)


Posted by: Bonnie Leonard

T & T Communication Services

T & T Communication Services provides speech, language, and literacy services for children and adults with communication disorders. These services include assessments as well as treatments. We work on location in schools, retirement communities, and private homes, as well as in our Durham Center

To visit the website and learn more - click here

Posted by: Emily Cross

Triangle Down Syndrome Network

Triangle Down Syndrome Network exists to support and connect families of children with Down syndrome by organizing and promoting activities. TDSN is striving to make a presence in the community. We want to ensure all people with Down syndrome have happy and productive lives. Located in central North Carolina, serving families in Wake, Durham and Orange and surrounding counties

Every year TDSN sponsors a "Buddy Walk," a time for families and friends of children with Down syndrome to come together and raise money and awareness.  Make sure to come join us next fall!

For more information click here - Triangle Down Syndrome Network

Posted by: Emily Cross

Kick Off....

Welcome to our blog! We are glad you're here and that you have a desire to gain more knowledge about communication impairments and disabilities. If you're in search of support, you're at the right place. If you are just curious and want to further your knowledge base so that you will be more aware, you too are at the right place! Anyone and everyone is welcome to come here and comment, post questions, email questions (via the above address), offer insight, check out the resources, etc. The sky is the limit.


We hope you find this site informative and useful. If so, please share it with whomever you might think will benefit!!


For more information on the ARC of Durham County click here.