Public

Support Groups

ROAD TO INDEPENDENCE WEBSITE

Road to independence is in the pursuit of providing information to the professional dealing with the individual adult living with hearing loss as well as to the individuals themselves. It is autonomous and endeavors only to provide information relating to it’s 20 listed areas of interest to those in need of it and to refer the individual to those who can support them specifically in what help they require to get them back on their road to independence.
Click here for more information.


Volume 17 Issue 2 KNOWLEDGE & UNDERSTANDING

Dear Readers

It’s winter and time for our June newsletter.
The theme of our letter is the importance of knowledge. I want to direct your attention to the list of educational articles and websites appearing in this newsletter. They cover a wide range of subjects on PWS. The child or adult with PWS is a complex individual and he or she cannot be approach according to a fixed recipe or pattern.
Click here to read more


 

Sotos Syndrome SA

WOW!!!!! This is our first newsletter!!!!

Who are we? We are a group of Sotos moms who are there for each other providing support and love! Currently we are four families; hopefully by the next newsletter we have doubled our numbers!

What do we want to do? We would like to establish a support structure for families in South Africa affected by Sotos Syndrome and raise awareness about the syndrome in our country to promote acceptance.

Click here to download the Newsletter.

 



Keilah Foundation
Background
The ketogenic diet is a very specialized, high fat, low carbohydrate diet used in the treatment of epilepsy. Research has shown that this diet reduces seizures by over 50% in more than half of its patients, with up to 15% of those patients becoming seizure-free1,2. It is for this reason that this diet is steadily growing in awareness and usage in South Africa.

Click here to download more infomation.


Dear Colleagues, please take note of the call for applicants for HI HOPES Parent Advisors (both in the WC for april training and GT for July training).

We would so appreciate it if you could share this on your website (print ad attached, website link below)

http://www.hihopes.co.za/newsArticle.asp?id=331
 

AFA Counselling Sevices

 

Click here to view the counselling services from the Association For Autism

The sms information service for disabled people

We have designed a system to help anyone with a cell phone to find theirnearest rehabilitation or other disability services.
Please send a short SMS to 072-172 2623 with your name, town, disabilityand the info you need.
We will then reply and tell you how to contact your nearest resource.
You can use your free SMS's but we are not a call centre so we do notreply to 'missed calls' or 'please call me'.
You can also send an email to the.sponge.project@gmail.com  or read moreabout us on http://thespongeproject.yolasite.com/

 Introduction

    • The.Sponge project is about advocating for better rehabilitation for disabled people. That includes awareness about rights, access to medical treatment and therapy, assistive devices, accessible buildings and transport, housing, education, skills development, employment and travel.
    • Our prime mission is to make information about resources for all the above services available to any disabled person with access to a cell phone.
    • We therefore offer an SMS Information Service (072-172 2623) to enable disabled people to locate their nearest rehabilitation resource.
    • Our secondary mission is to try to sensitise people about disability issues and assist them to network with each other by subscribing to one or more of the Disability List Serves - see below.
    • We send this newsletter to everyone on our database of resources (currently nearly 4000 contacts) to improve their awareness of disability issues and let them know how they can get more information.
    • We think that ours is the only cross-disability newsletter addressing government departments or NGOs in this way in order to plug the gap on information on disability.
    • Great news - The.Sponge has come out of the closet. We have posted our Excel database of resources onto our website. You are free to download it (about 2Mb), save it and manipulate it for your own non-commercial purposes. We will continue to update the database as we find new resources.
    • Register with us - if you would like us to add a new resource or update your contact details, please complete and return the registration form that you can download from our website.
    • We have reverted to a text-only format to be compatible with all discussion lists.
    • If anyone has a problem to access this newsletter or the website with magnifier software or a screen reader, please let us know.


Promotion of the sms info service

  • We are not receiving as many SMS enquiries as at the start of the project.
  • Please make copies of the Community Notice at the top of this newsletter and display them in your offices and anywhere in the community where they may be seen by disabled people or their families. We would like to see the notices on the community notice boards in Shops and in Hospitals and Clinics, Welfare offices, SASSA pay points, Churches, Post Offices, Police Stations, Libraries, Schools, and Ward Councillor and other Municipal offices.
  • You are welcome to add translations in local languages so that the service is accessible to as many disabled people as possible.
  • It would also assist us if you would please include the notice in your newsletters or websites.

Angelman Syndrome

We are parents of a 5 year old girl who has Angelman Syndrome .  Currently in South Africa there is no network or foundation for parents or families living with an individual diagnosed with this Syndrome. Due to not enough awareness of this Syndrome alot op people living with this has not been diagnosed yet.  In countries such as America, New Zealand, Australia and Canada (to name just a few) they have huge  systems in place for the diagnosis of Angelman and support to those that have been diagnosed.

We need that network here as this Syndrome is very rare and dibilitating to families.  Our goal therefore is to try and locate all the individuals (called Angels) and their families living with Angelman in the whole of South Africa and to unite them.

If you have an Angel or know of one please contact us either on:

phiz@mweb.co.za or 039 7374613 or 0836350237

Regards,

Shawn and Alida Phizacklea


 

 

Speakeasy Stuttering Association of South Africa was established in 1992.

It's vision is to improve the lives of people of all ages who stutter and toliberate them from the fear of speaking so that they can communicate effectivelyin all situations.

It is a non-profit association with a membership of People Who Stutter, SpeechTherapists and other interested persons from throughout South Africa and beyond.A Self Help Group For People Who Stutter is held on a Monday or Wednesdayevenings on a month basis and is used as a forum to discuss issues aroundstuttering, share ideas and experiences, practice one's speech techniques andmeet other people who stutter.

There is no fee involved and if one attends a meeting, there is no obligation toattend other meetings. Speakeasy is held in a friendly, warm and informal forumand everyone is welcome!

For further information, please contact Dina Lilian 082 820 6225.


 

 

Hi Hopes offers support, education and partnership to families with deaf orhard of hearing infants and toddlers.

Hi Hopes is an early intervention programme that empowers parents of deaf orhard of hearing children aged birth to three years. The programme is home basedand free of charge, resulting in families being visited in their naturalenvironment at a time that suits them.

Parent Advisors visit families weekly and partner with them as they begin theirjourney along the (often unknown) road of hearing loss, with their child. Theyoffer support, information and education about any area of deafness thatinterests or puzzles the family. Parent Advisors administer quarterlyassessments of language development. This language assessment scale is designedfor children with a hearing loss and assesses the child’s progress in languagedevelopment (both receptively and expressively), helping parents make decisionsregarding language methodology, amplification and other related aspectsinfluencing language development. Parent Advisors partner with otherprofessionals in the child’s life to ensure that the best possible support teamis provided for the family.

In addition to a Parent Advisor, Hi Hopes offers families the opportunity to bevisited by a Deaf Mentor (oral or signing, depending on the communication choiceof the family). Deaf Mentors are successful, Deaf members of society, trained towork with families and children with a hearing loss. The Deaf Mentor serves as arole model for the deaf child and family, a language educator and a means ofaccessing the Deaf Community. Having a Deaf Mentor allows parents to interactwith successful Deaf adults and to build on their hope for their child’s future.

Hi Hopes is proud to have a qualified Psychometrist on staff who performs a fullbattery of developmental tests on all children in the programme biannually. Theresults of these tests provide insight into the overall development of the childand allow parents to understand areas in need of development, ensuring that thechild develops to the best of his ability at all times.

If you, or anyone you know, has a child with a hearing loss, Hi Hopes is here tosupport you. Please contact our offices on 011 717 3750 or email us at HiHopes@wits.ac.za.We would love to hear from you and walk this journey with you.

Prader-Willi Syndrome

What is it?

Prader-Willi syndrome is a genetic disorder. Individuals suffering from the syndrome have specific characteristics such as hypotonia (low muscle tone),feeding difficulties and incomplete sexual development in the neonatal period, and obesity, short stature, mental impairment and behaviouralproblems later on. The condition was first described in the medical literature in 1956 by three doctors: A. Prader, H. Willi and A. Labhart, hence thename. The prevalence is between 1 in 10,000 and 1 in 15,000 live births. This syndrome occurs equally in males and females and is found in individualsof all races.

 

Click here for more information

Prader-Willi Syndrome Association (SA)

Cerebral Palsy

National Institute for the Deaf

Muscular Dystrophy Foundation (MDF) in South Africa

Down Syndrome South Africa

Soweto early Intervention Centre

Carel du Toit Centre

SA federation for Mental Health


 Resources for parents with Special needs children

My son, Randy, was in an accident when he was in college that changed his physical and mental abilities. I remember right after it happened going to support groups, mostly because I wanted to learn how I could help our family adjust in a healthy and harmonious way and to not feel alone in my experience. I remember meeting a lot of parents whose amazing children had been differently-abled their whole lives, and it really made me think about how I would have wanted to make sure Randy always felt included had he been little when his abilities changed.

Now that I’ve finally started my own site to support other families who have a differently-abled member, I want to honor the parents of young children who work so hard to see that their little ones are always included, especially this time of year when there is so much outdoor fun to be had.Thanks Don, Lewis

support@abilitylabs.com
AbilityLabs.com

Backyard Camping for Kids with Disabilities

 Playground Tips for Children with Special Needs

 Teaching Swimming to Children with Disabilities: Benefits & Safety Precautions

 Accessible Entertaining: Making Sure Your Disabled Guests Feel Safe and Welcome in Your Home

 The Best Bikes for Special Needs Kids

 Finding the Right Hotel for Your Child with Special Needs

 32 Vacation Destinations for Individuals with Special Needs