Being a mother of a child with disabilities in Syria

“In this photo, I am providing proprioceptive stimulation  to Hadi using a Swiss therapy ball to help him feel his own body and movements, while also working on his balance and protective reactions. I move the ball in different directions to observe and strengthen his posture and balance reactions.” -- Qasim Al Ahmad, HI Physical Therapist

Something was different

When Hadi was about one-and-a-half years old, I started to notice that he couldn't balance like other children. He could not walk properly and kept falling over. As a mother, I felt that something was wrong, but we had been displaced in Lebanon for many years, so it was difficult to understand what was happening to him or where to seek help.

I took him to see several doctors. Some said he just needed to lose weight, but I knew that couldn't explain everything I was seeing every day.

After a year and a half, he underwent tendon surgery. Since then, his life has revolved around physical rehabilitation, exercise, medication, and hospital visits. It took a long time to get a clear answer about his condition. 
At the end, he was diagnosed with cerebral palsy, which resulted from his premature birth at seven months. The prematurity and associated complications led to hypoxia (a lack of oxygen), causing neurological damage. A recent clinical assessment also revealed hip subluxation, and Hadi was referred to an orthopedic surgeon and subsequently to an orthotics specialist for further management.

When we returned to Syria one year ago, finding rehabilitation services for him again was one of the biggest struggles. Going to the hospital once or twice a week is expensive and exhausting. Sometimes, arranging transport alone feels impossible.

A walker and rehabilitation

Hadi needs a walker because he cannot stand or walk un-assisted. HI will provide one for him once he has made further progress with walking and balance. He also needs medication and lower leg braces, which are very expensive for our family.

I often think about sending him to school. Like any other child, I want him to have a childhood with friends and an education. However, I am deeply afraid that other children will make fun of him. Hadi is extremely sensitive, and I try to protect him from feeling hurt or different.  

“Our rehabilitation program for Hadi aimed to improve his functional mobility, independence, balance and participation in daily life. During therapy sessions, we reduced muscle tightness through stretching and relaxation exercises. We also improved postural control, balance, and protective reactions, while developing transitional movements, such as moving from a lying position to a sitting position, kneeling, half-kneeling, and eventually standing with assistance. We also used sensory-based interventions and encouraged the functional use of his upper limbs through play-based therapeutic activities. Hadi achieved meaningful progress, including independent kneeling and the ability to transition to standing with the aid of a mobility device.” - Qasim Al Ahmad, HI Physical Therapist

The dedication of a caregiver

I still carry him from one place to another at home. He mostly moves by crawling because walking is very difficult for him. It is very tiring, both physically and emotionally, but he is my child. What hurts the most is the feeling that families like ours are left alone to figure everything out by themselves.

HI Advocacy Manager for Syria Noor Bimbashi shared: "Unfortunately, the planned rehabilitation program could not be completed as the family relocated far away from the clinic. Eight sessions were completed though, and this does sometimes happen. As Syria is still recovering from the war, many families are displaced or have moved to new places. However, we are still in contact with Hadi’s mother by phone, and she continues to follow the prescribed home exercise program. To support Hadi’s social participation and community inclusion, his family has now enrolled him in swimming and taekwondo classes, which are helping to boost his confidence, social engagement, and motor skills.