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Home Down Syndrom Charity Association DSCA Working with mothers of Down syndrome children, DSCA Riyadh, Saudi Arabia
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Down Syndrom Charity Association DSCA
  • Ibn Al Muallim, Umm Al Hamam Al Sharqi, 8248 Riyadh Saudi Arabia
  • +966 505908401
  • suzanne@nulldsca.org.sa
  • Suzanne Alghanem
  • suzanne@nulldsca.org.ca


Working with mothers of Down syndrome children, DSCA Riyadh, Saudi Arabia

  • Childhood : Family
  • Asia : Saudi Arabia
  • Experience Index Card

From Suzanne Alghanem the Jul 19, 2018

30 years ago, the parents thought at disability as a disease. They didn’t ask for anything except for their child to heal. That changes now. They want to interact with their child because they know that he will grow with its difference, which is also a personal wealth.
  1. Context

 

DSCA's VISION, located in Riyadh, is to be a leading institution in educating and training children with Trisomy 21 in Saudi Arabia.

 

DSCA Provides training and information for female care takers in families.

The Charitable association provides direct educational and rehabilitation training services for children from birth to 23 years of age.

We develop local modules of services and material developments through three major programs:

  • Early intervention program with physical and fine therapy sessions, individual training sessions for children, and group training for mothers.
  • An educational class program with speech and physical therapy sessions, fine skills training and behaviour modifications sessions
  • A Home training program, with family support and training, evaluating the home environment, setting goals and building strategies with families and evaluating the child daily activities. 

I’ll focus my contribution on the family support that is one of our specificity in Riyadh. 

 

  1. Purpose and objectives

 

  • Why do you give you such importance to the work with mothers?

My professional experience, working in hospital and school, taught me that working without families is nonsense. I saw mothers waiting outside during the therapy and was not happy of this situation. I started experimenting myself to take children outside of the room for therapy. We went working in the garden, doing things in the actual life and reached real improvements. I started working with parents, inside then outside. I went to their house, only in private, because it’s forbidden in a public intervention.

Mu success story comes from this decision to cooperate with the families, even if I don’t want them to be therapists for their child.

30 years ago, the parents thought at disability as a disease. They didn’t ask for anything except for their child to heal. That changes now. They want to interact with their child because they know that he will grow with its difference, which is also a personal wealth. 

One of our aim is to make the better interaction possible between parents and child.

 

  1. Project monitoring

 

The program was launch in 3 phases: 2000, 2003, 2010.

We focus all phases on ‘Daily Living’. In the first phase we develop a training basically focused on what the mother does with her child every day. We start with one thing, and try to change it from a duty to a good experience. For example we begin by transportation situations, in the car or wherever else, out the house.

Then we extend to more activities, slowly, until we can reprogram the daily activities in a positive experience. For example, the meal time; We make the family involved in this time. We photograph the time so we can discuss on the difficult moments and sometime we have to convince the parents to give their child more time. We do so with everything, reprogram the entire daily time to make of it a positive time.

During this process, questions come. If one solution is found, perhaps will the father not accept it? The questions come normally, not in lecturing way, but day by day. Questions come along the life of the chid. And the family chooses the best solutions.

 

After, in the second phase, we started evaluating the child and write the main goals for the child and the mother. All individual projects are different. It depends of the family, the number of children, the location…. If they have problems with a goal, we come again in the family to modify or help them to reach it.

 

The third phase is to prepare to go out of the childhood and enter in teenage. Children change, develop, they need changing all time. At 8 they start about sexual development. We discuss on their behaviour, acceptable and not, always on daily living to prepare the child for his future

 

  • How is this work connected with the work of school teachers?

On phase one, the child is not in the school. So there is no connexion.

In phase two, the family trainers work with the teachers. They meet and exchange information to monitor the individual program, that has each child.  Sometime it leads to a supplement program with the mother.

Parents have to work with us. If not, we indicate other places where they can put their child. We need the investment of the family because they have the skills.

 

  1. Project ressources

 

 

The family trainers have a psychology or teacher’s back ground . They have anyway to work first for three years as teachers. They need more skills and are better payed .The work with families is much more stressful. They need to switch always between the child’s need and the demand of the parents.  

The government does not pay anything for these interventions . The family pay an amount depending of their income. It cannot exceed 50 % of the cost.

The rest is brought by donation, sponsorship.

 

 

  1. Evaluation

 

Our work is based on a program. At the beginning, the team propose certain goals or priorities. If the family agree, they write them down and make together an agreement. It’s the job of the staff to make realistic goals. If the goals are reached, everybody is satisfied. Some families, very few, are not realistic. It can become, depending of the families, a counselling program. Most of the time the goals are achieved between the team and the mothers.

For the beneficiaries, we have a survey device in the program. In this device, the mother can write anything she wants. Most of the feedbacks are positive, 80 % of the mothers are satisfied of our interventions. Some wants more for their child.. There is not much to improve. Not many people in Riyadh do what we do. 

 

We saw a lot of changes. It’s very hard to measure the impact of our work with families. But I would say that the majority is on the level of the integration of the child, the major point. Being at peace is the second, not comparing with other children. The child himself is the most important.

 

One of our major difficulties is the location space, not big enough to have a place for mothers and fathers. I’d like to do more home intervention than school intervention.

My ultimate goal with parents is to have a guide to give to parents. 

 

I would say to any readers of this experience that the best thing you can do is to work with parents.

Do not come with a book or agenda, ready. Every family is different. It’s easy to say but very difficult to settle.  

Lot of our trainers defend the child against the parents? I say them : “They stay and you are leaving. They are the parents, not you.”

For me, my lesson is to loose my ego. If the family achieve or not the goal, it’s not about me. That depends of so many factors.

 

 Suzanne Alghanem

 

 

 

 

 

 

Canonical language : English
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