Being the caregiver in a family of five

Ameer is a 4-year-old boy with Down’s syndrome. His father, Mohammed Rababa, is a university lecturer, and his mother, Ayat Alawneh, manages the household. The family lives in Irbid, Jordan.

Being Ameer’s caregivers is a joint effort. Both of his parents understand that Ameer may need additional attention and support, such as physiotherapy, occupational therapy, special education, hearing and visual aids and mobility aids. They see this as crucial for his development.

“We firmly believe in the importance of including Ameer in our community. While some families may choose to hide their children with disabilities away, we take the opposite approach. We’re determined to integrate him into a regular school and the broader community. It's our role as caregivers to ensure that he’s not only cared for within our family but is also included and embraced by society."

Mahommed

Currently, Ameer attends pre-school with other children, which is a significant achievement.

The importance of guidance for caregivers

HI has provided Alawneh and Mohammed with guidance on how to help Ameer. Alawneh has learnt a lot about how to care for a child with disabilities, how to develop Ameer’s autonomy, how to improve his communication skills, etc.

They have discovered useful educational tools, such as flashcards for matching colours and shapes, which will help Ameer with his cognitive development and problem-solving skills and prepare him to hold a pen and write and draw.

HI has also provided guidance on how to improve Ameer's motor skills, which are essential for performing tasks independently and interacting with others.

“One important thing we’ve learned is how to do a face massage as part of Ameer’s speech therapy [actual massage of the face to strengthen the face muscles, which helps children with Down’s with their speech and pronunciation]. This will make him able to communicate better.”

Alwaneh

HI emphasises the importance of working on Ameer's hearing and visual memory. His parents encourage him to tell them what he learned at school to foster his language skills.

The most challenging aspect as caregivers is managing time effectively.

“We have two other sons without disabilities, aged 11 and 9, who also require our attention and care. Balancing the needs of all our children can be quite demanding, and sometimes it feels like there simply aren’t enough hours in the day.”

Alawneh

Finding a school and taking time for themselves

It has been a struggle finding a school willing and equipped to accept a child with Down’s syndrome. Unfortunately, government services for people with disabilities are limited and even private schools can lack the experience and resources needed to accommodate children with disabilities. Some private schools may even be reluctant to enrol these children due to concerns about their brand image.

Ameer goes to a private preschool called the Space Horizons Preschool, along with children without disabilities. This preschool is working out well for the family. Ameer is the only child with a disability in his class. He spends an hour a day with a special needs teacher and the rest of the day with his main classroom teacher. This preschool was the only one not to require a full-time shadow teacher for Ameer and was very accommodating and inclusive.

Now that their children are at school, Mohammed and Alawneh have time for activities other than caregiving. They walk in the park near their house every day for an hour or so. Sports and physical activity have become an essential part of their routine to help them relax.