Mothers with disabled children turning to social media for emotional support
Mesude Erşan – ISTANBUL
Social media has emerged as a new platform to give mothers with disabled children a place to talk, share experiences and find support. The online community offers people an opportunity to connect with others in similar situations.
One of such social media groups is the platform named “Meeting Group of Mothers with Disabled Children” (“Engelli Anneleri Buluşma Grubu” in Turkish), which has 11,000 members. For parents of disabled children, the benefits of being part of a community that understands and empathizes with the challenges they face run very deep.
Arzu Yat is one of these parents. She has two children, one of whom has the West syndrome, which is characterized by a specific type of seizure (infantile spasms) seen in infancy and childhood. This syndrome leads to developmental regression and causes chaotic brain waves. Yat’s other child has hemophilia, which is a rare disorder in which blood does not clot normally because it lacks sufficient blood-clotting proteins.
The situation of her two kids forced Yat to quit her job. “We [mothers with disabled children] place our kids somewhere and work,” Yat told daily Hürriyet. Her husband is working on a minimum wage, which she says is quite insufficient to make ends meet.
“I apply [to the authorities] to get disabled benefits every year. They come to our house, for which we are paying a rent of 650 Turkish Liras. Then they say, ‘Your situation is quite bad’ and then leave. But then, we are not put on a disabled payroll since my husband is working with an insurance coverage,” said Yat.
Mine Dinç is another of these mothers who is connecting with other parents going through the same challenges. She spends every minute of her life with her four-year-old son Poyraz who has cerebral palsy, which is disorder of movement, muscle tone or posture that is caused by damage to the immature, developing brain.
“Doctors had said for Poyraz that he would live only until the age of two. Right now, the state is covering the expenses for eight sessions of physical treatment [a month]… But we need to get a report from the hospital every 30 sessions. On top of that, the physical treatment service at home has been abolished. We are pushing our financial limits and have our children take these physical treatment sessions at home with our own money,” Dinç said.
“We cannot find some of the epilepsy medications in the pharmacies. Vitamins and supplements are very expensive. We [as mothers of disabled children] compensate the missing medications from each other. Despite the relevant health reports, without taking our children to hospital, we cannot have the medications prescribed. But it is so hard in the winter, especially when it is snowing. No one else but us [mothers with disabled children] understands us unfortunately. This is why we have established a support network,” she said.
Özlem Erdoğan similarly has a child with cerebral palsy. Erdoğan said one of the biggest problems is the insufficiency of physical therapy sessions that are paid by the government.
“More support should be provided for our children. The number of special schools for disabled children should be increased. Families are going through a big problem. For our children to stand upright, to walk, they need orthoses, but we can get them only with a report signed by three doctors. But the financial means provided for them is 100 Turkish Liras, which is a very small amount, whereas we need to pay much more [for orthoses]. There are also children dependent on beds and respirators. It is only if you have money, you can take care of your children,” said Erdoğan, the mother of the 3.5-year-old Yılmaz Efe.