Special Needs Support Group Tableview

Kendra

posted by Kendra's mom @ 1:45 PM 0 comments

The Ruan Belcher & Other Near Drowning Survivors’ Rehabilitation & Educational Trust

Trust No. : IT3848/2004
5 Madison Square, Edgemead, Cape Town, South Africa, 7441
Telephone : 27 21 558 9871(a/h) e-MAIL : sheila@telkomsa.net

Our banking details are :

First National Bank
Account No. : 62078343391
Branch Code : 20-14-09

Shortened name : NDST


Ruan survived a near drowning accident on 1 April 2002 at the age of 4. He was in a coma and on a breathing machine for 3 days. He spent 9 days in intensive care and the rest of his time in hospital (5 weeks in total) in the childrens’ ward. When Ruan came home he was blind, could not eat, could not walk, talk, use his hands, was incontinent, had constant high temperatures, severe muscle spasm, profuse sweating, grinding of teeth. His body was in a bad shape with his feet pulled down and inwards and his hands clasped closed with his wrists down and his hands under his chin. The rest of his body was like a stiff plank.

Today, almost 4 years later, Ruan can see, eats albeit with difficulty, his eyes are perfect, he understands everything around him and his personality has not changed one bit. He still cannot talk or walk, but he can sit up on his own, throw a ball (and everything else he gets hold of), he indicates very clearly with body language. He still wears nappies and has to be fed, bathed and everything else, but he’s getting better!!

When we brought Ruan home, we realised how little help there was about to deal with this new challenge. There is no central body to which one can turn for information, financial aid, emotional support, etc. We were aware that a lot was being done, successfully, for the rehabilitation of brain injured children, but nothing was readily and easily available. So one finds oneself with a seriously injured child, a whole new life with a child with special needs, and nowhere to go. It was quite by chance that we met a lady who had done wonders with the rehabilitation of her son, and who, on her own experience, gave lessons to others. These practical lessons along with her determined attitude to “do” for these kids, gave us the confidence go forth and fight for our child.

There is not a single official body that we know of that is hands-on, available to assist parents who find themselves in this position. There is no central social structure (government) to see to the needs of these children. There are many people out there doing wonderful things for these children, but they are on their own and when one is lucky enough to hear of them it is so late in the child’s recovery that one ends up feeling bitter that you did not know of this technique/therapy/person/practice one, two or three years prior.

No child should be made to wait like this and no parent should be put through this. They have enough to deal with and there should be a central body, be it governmental or NGO, to whom these parents/children be referred immediately, following such an accident. Also when at birth or soon thereafter, brain injury is detected. EARLY INTERVENTION IS ESSENTIAL. We continuously hear about early intervention for normal children. These normal children can walk, talk, etc. and will grow up to be fit, fine and healthy adults. Our children will have to fight continuously to get there, if at all.


It is criminal not to help them along the way, as best we can. These disabled children, who need care for 24 hours, 365 days a year, are likely to become adults who will need care for 24 hours a day, 365 days a year. We need to try to prevent that. We need to help their parents and carers to do the best for these children. We need to pull together and formalise and get a structure in place. We need to do this urgently. These incidents are happening every single day.

So why establish a trust. Well, firstly it is a legal entity where there is accountability and hopefully continuity. We cannot establish something like this and let it fizzle out and die in a couple of years. We have on occasion tried to contact the traditional societies (that we all fund raise for, well known, etc.) and have not had the decency of a reply to telephone messages, e-mails, etc. One cannot help but wonder where these funds, which run into millions, are being spent. If that sounds harsh, I apologise, but if a parent of a special needs child cannot get hold of an organisation for people with a disability, it is extremely demoralising. It makes you give up hope, makes you feel stupid about your passion for doing for your child, when organisations such as these won’t even speak to you.

So, the purpose of this trust is as follows: To raise funds to be able to set up office, which is manned 24 hours a day, or at least within normal office hours, so that we can be on constant call when parents land in a position as we did. We do not want the parent or child to wait for a week, month, year to find out where to get proper seating, learn special care, etc. They must get it immediately. They must get emotional support immediately. Rehabilitative programs need to start immediately. Flyers need to be placed in all hospital wards, doctors rooms, etc. so that the parents and medical staff know where to find us immediately.

We also need to have an up-to-date data base of information, that these parents can tap into easily and of other parents that may be called for support, shared information, etc. Most importantly, and the most expensive item, we need to create a rehabilitation centre. There are day care centres, schools, etc., but there is not one single rehabilitation centre in this country for brain injured children. As far as we are aware, there is no such centre in sub Saharan Africa and maybe even beyond.

The most perfect setting for a rehabilitation centre would be a place that is either in the country, or has the ability to feel as if in the country, yet it should be relatively accessible to all. It would be very important to have ponies or horses, for hippotherapy and space would be required for that. It would be important that these children, especially in the initial months, could reside at the centre with both or one of his/her parents, or alternatively, visit the centre every day of the week, as if going to school. It is important for the centre to offer all the traditional therapies as well as alternative therapies that have proved successful. Its essential that these children receive an education.

Special needs schools either have a main stream curriculum, and with no scientific proof, they ticket your child as not fit/able to receive an education. Or alternatively, you have other special needs schools where no formal education is given, only life skills, etc. So where does that leave the child who falls in between these two sides of the scale. Nowhere. We believe that every child should receive an education. Those who manage what they are exposed to, wonderful, those who don’t, they would have lost nothing. But just imagine what those who are capable, but have been labeled otherwise, are missing.


There are many methods by which basic education can be taught to severly disabled children. It costs manpower and one-on-one dedication. This is expensive. For this reason we need to be sustainable. We have a plan to make this work.

Many mom’s stay at home when they are faced with caring for a child with special needs. They firstly feel that they are not contributing to the family income. Secondly they are left alone all day to perform a difficult task on their own. At such a centre we could encourage mom’s to come along with their children and learn and mingle with others in the same position. This would cut down on hiring staff costs as well as ensuring that the parents are participating fully in their child’s rehabilitation.

Alternatively, mommy could go back to work with the knowledge that her child is receiving the best treatment possible to aid his/her rehabilitation. Workshops could be held in the evenings or on weekends to make such working moms and dads feel participative and informed in what is happening with their child during the day. Focus can thus be given to their employment and they need not worry or feel guilty.

So, the next obvious step is to raise funds. We have devised a method which we believe is an excellent idea. On the next page you can view the letter, which explains this fundraising idea. It can be done with no expense to anybody and the least amount of effort. It could also lead to great fun, depending on the hostess’ ability to party!!! The joy of this method of fundraising is that it also raises an opportunity to spread the word across the community, of the needs of these children. So wherever you are, if you are reading this now, print out ten copies of the letter and have a party!!!!
We also have a wonderful idea where a workshop to manufacture a certain household item could be set up. We could employ moms who bring their children to the centre, and are not involved themselves. We could work on a 50/50 basis where the ladies take home 50% of whatever they manufacture and 50% goes back to the centre. The product we are considering is sure to be a best seller to stores such as Woolworths, Home Stores, etc.

Please note that these thoughts are taken from our experiences with Ruan and having met others on the same social level as ourselves, or some much better off. Since this happened to Ruan, it has been heavy on my heart and soul considering what some poor black mamma in a township does when faced with this dilemma. I don’t know much about politics, but the way things stand in our country at present, I think that every child with severe special needs could demand answers from the “system”, relating to their human rights. They are not being addressed. I know this for a fact. I also know that we cannot leave everything that needs doing to government. We as a society have to take ownership on such issues and this is what we hope to achieve with this Trust.

We believe that in order to make this a lasting entity for years to come, we need to set the foundation properly. For that reason, our most immediate requirement would be an office with a computer linked to Internet and e-mail and a printer, a telephone and a desk. We then need volunteers to run the office. We require stationary to record each child’s details who makes contact with us. We need to keep files on each method/center/new treatment/etc. of rehabilitation and all the contact details thereof.

We would thus need a filing system with hanging files plus folders. We would need typing paper, stapler, paper punch, etc. We would need a kettle, coffee, tea, etc. so that the volunteers are cared for while on duty.

Secondly, once the office is set up, we would require thousands and thousands on flyers to be printed, and we need to distribute these a.s.a.p.

We need to use the flyers twofold – we must make people who need us aware of where to contact us and we must use it as a tool to create safety awareness regarding drowning.

Third, we require a piece of land, situated where it would be relatively accessible to people of all walks of life, while also being in a peaceful, country-like position. We then need to build the center. The cost thereof will run into millions, but once again, one can build the center in phases, thereby not waiting forever to get started.

We trust that the above would firstly, make each of you reading this, aware of the needs of these children and secondly that these words would make it clear to you that wherever help is available, financial or otherwise, this would be a very worthy cause to back.


Best regards
Thank you for caring

SHEILA BELCHER

posted by Kendra's mom @ 12:21 AM 0 comments