Helpful Information

~  Helpful Information  ~
Providing sources of information does not constitute SOFT’s endorsement of the sources or the information they provide.
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Accessibility
♦  Ramps.org has created a national directory of community service organizations that provide free or low cost ramp building services for members of their community who cannot obtain them on their own for financial reasons.  It is a free resource providing information on home accessibility and ramping systems.

 AMSVANS  has a new airline seat for disabled children.  See it at the blue AMSVANS link.

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Medical Devices and Equipment
This information, submitted by SOFT members, might be of assistance.  If your child is using equipment that you would be comfortable recommending to others please let us know and we will add it to this page.

♦  Hearing Bands:
    •  The Cochlear™ Baha® system is a Softband device for older children.    See the NIH PubMed abstract about this device here.
    •  Child-friendly Ponto Softband
(for babies and young children) is specifically designed for children who cannot be assisted with conventional hearing aids.

♦  Eye ware: sunglasses.  Photophobia (painful light sensitivity) & Photosensitive Epilepsy:
    SOFT Board member Steve Cantrell, OD, suggests obtaining medically necessary lenses as Photosensitive Epilepsy is common to Trisomy 18 & 13.  See article in
    SOFT Times Newsletter, September, 2016

  • Colbalt Blue lenses: SOFT Children with seizure activity should wear Photosensitive Epilepsy Sunglasses (with Cobalt Blue lenses) indoors and out.
  • Kodak BluTech lenses: www.BluTechLenses.com or Total Blue lenses: http://www.signetarmorlite.com/kodak-lens/kodak-total-blue/: Either of these
    lenses are for light sensitive SOFT children without seizure activity, to protect their eyes from painful light.

 ♦  Eye ware – a new line of Clearvision children’s  glasses can be found here.

 Footware – Hatchbacks provides shoes to fit over AFO’s

♦  Beds – Here is a selection of Beds for special needs children  and here is information about the “Stockton Bed.”

♦  eSpecial Needs, an equipment company suggested by another mom, retails strollers, wheelchairs, ramps, strollers, pushchairs, stroller-style pushchairs, and other equipment.

♦  Rifton Activity Chair 870:  Lynne Stockman, mother to 12 year old Lyndsay who has trisomy 18, says the Rifton Activity Chair 870 is a really neat chair to feed in and do activities. The Rifton Activity Chair is a positioning chair that provides versatile and adaptable seating for clients…click here to read about it: Rifton Activity Chair, a revolution in active seating.

♦  Tumble Forms® Jettmobile®Terre Krotzer, mother of 12 year old Krissy, says Krissy does great on this in therapy.  She uses it sitting and pushes with her feet.

♦  The “Scoot,” from Kari Brockman Adamson:  Here’s a new product from the Firefly line of Leckey. It can be a 2 in 1 or a 3 in 1. We got the 3 in 1… but this is where you start. Leila is a Scoot Mobility Riderlittle on the small side still. She can move with her feet, but can’t really push herself up and move with her arms. It’s a place to start!

 

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Medical or Surgical Information (also, go to the SOFT publications library to find similar literature)

♦  Apnea:  

♦  Cardiac:

 Dandy-Walker Malformation (DWM) – the exact cause is not known but a few SOFT families mention DWM as a part of their child’s medical findings.  DWM is sometimes associated with hydrocephalus.

♦  Ear Infections:  University of Maryland in-depth report on the causes, diagnosis, treatment, and prevention of ear infections.

♦  GI Problems:

♦  Seizures:   Boston Children’s Hospital provides explanations

♦  Scoliosis – what is scoliosis?  by Dr. S. Shah of Nemours Alfred I. DuPont Children’s Hospital.
♦  Information regarding scoliosis surgery, from the Scoliosis Research Society.


♦  Tips on taking a special needs child to the ER:  
Taking your child to the ER: Tips for Making It Less Traumatic, By Douglas J. Segan, MD. Permission to link provided by Joe Graedon of People’s Pharmacy.

♦  Tracking Rare Incidence Syndromes:      The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures and vocalizations to communicate, walking (with or without assistance) and interacting with family members.  A combined total of 860 surveys representing children and adults with rare incidence conditions such as trisomy 18, trisomy 13 and trisomy 9 mosaic were completed as of 10/31/16.  58.3% of children were at least 2 months of age or greater.  A total of 1007 children and adults are enrolled in the project; many are SOFT members.  Your participation is welcomed and encouraged. Contact Debbie Bruns, Ph.D., Southern Illinois University, Carbondale, IL at dabruns@siu.edu  or go to the project enrollment page located at http://tris.siu.edu/survey/form/PreEnroll.php                   

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Nutrition and Feeding Aids
♦  Organs: Small and Large Intestines: 
an explanation of this portion of the digestive system; a link to the Children’s Hospital of Pittsburgh.

♦  The Pacifier Activated Lullaby (PAL) is a pressure sensitive pacifier developed by a music therapist as a teaching tool to help premature infants learn to suck.

♦  Probiotics to Ward Off Colds – The People’s Pharmacy®
   
Probiotics may help children as well as grownups fight off colds and other respiratory infections. Permission to link provided by Joe Graedon of People’s Pharmacy.

♦  SHS Nutrition:  
This site has been designed to help you understand more about Advanced Medical Nutrition and its related conditions. You can use this site to search through our extensive range of articles, references, clinical studies and product information on Advanced Medical Nutritional Therapies.

 Special Needs Feeder (new name for Haberman feeder).
This special nipple for bottle feeding premature infants and also infants with cleft palate is available through Medela Inc. Medela sells breast feeding supplies but also has related products such as the special needs feeder. Several SOFT families have reported success using this nipple. It can only be ordered by phone at 1-800-435-8316 or is sometimes available through medical supply companies or pharmacies.  See a video explaining the feeder at  Mandy Haberman inventor of the Haberman Feeder.

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Photography
♦  Now I Lay Me Down to Sleep foundation (NILMDTS) administers a network of almost 6,000 volunteer photographers in the United States and twenty-five international countries. At a family’s request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. Our entire network of affiliated photographers graciously donates their time and talents to our families and we are proud to be able to offer our services at no cost. Video of Trisomy Children 

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Other information

    • California Birth Defects Monitoring System (State of California governmental website)
    • California:  In-home care waivers:  The California Department of Health Care Services In-Home Operations Branch administers the In-Home Operations Waiver (IHO Waiver) and the Nursing Facility/Acute Hospital Transition and Diversion (NF/AH Waiver).  The IHO Waiver and NF/AH Waiver offer services in the home or in the community to Medi-Cal beneficiaries who would otherwise receive care in a skilled nursing facility.
    • California:  List of Medi-Cal Waivers   The California Department of Health Care Services has a number of Medi-Cal waiver programs that provide home and community-based services, family planning services, specialty mental health services, or managed care to specific groups of eligible individuals. Information found here can assist the general public in understanding the services available under Medi-Cal waivers, how to access those services, and to provide general information about Medi-Cal waivers.
    • National Disability Rights Network (NDRN) is the non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A/CAP agency in every state and U.S. territory as well as one serving the Native American population in the four corners region.  Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
    • Medicaid Waivers by State:    Although there are waivers for many conditions, our focus is towards waivers for people who have intellectual disabilities, developmental disabilities, and autism.
  • Donate Life America. Under the right circumstances persons affected with trisomy conditions can be organ and tissue donors. Donate Life is a 501(c)3 non-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation.

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Shopping/Books/Subscriptions

  • Perfectly Preemie:  Clothing for Preemies and a shopping app for international families.  Australian SOFT mom Bron recommends an app called tunnelbear that puts your browser into “local mode” so American shopping sites can be browsed more easily by non-USA members. She was looking for Preemie clothing and found it at Perfectly Preemie.
  •  “Hello My Name is Simon”  by Sheryl Crosier and as told by Samuel  and Sean Crosier.  This book is about a very special relationship among three brothers. Even though Simon, their baby brother has died, his older brothers continue to have conversations with him.
  • “I Am Not a Syndrome – My Name is Simon”  This book by SOFT parent Sheryl Crosier s now available from publisher All Star Press – Books that Change Lives. It is offered in .pdf and all online e-book formats and in paperback from the publisher’s website.    A portion of the proceeds from every sale of this book goes to SOFT.
  • Exceptional Parent (EP) This monthly magazine is helpful for parents of a child or young adult with special needs. It provides family stories, an annual resource guide of organizations for all disorders, and discusses products, and services.
  • Heritage Makers:  Story booking is the unique Heritage Makers process of combining photographs with personalized writing into one or more professionally bound books.
  • The Complex Child The Complex Child is a monthly e-magazine. Each issue contains subjects of interest to SOFT families and the magazine’s website article archives are extensive.

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