My life: family in Sfax with autistic twins

Tunisie Numérique has conducted a series of interviews with Tunisian families to find out how they handle their budgets in these times of crisis that the country is going through.

These Tunisians come from various social classes, of different ages, and live in both posh and popular neighborhoods. They voluntarily consented to answer in a spontaneous and anonymous manner to the questions of Tunisie Numérique. The stories have been transcribed as they are.

Husband, Karim aged 50,

Wife Hiba: 40 years old.

The couple has been married for 15 years.

Karim and Hiba possess a tea room in a posh district of Sfax.

Karim confides to us: “After deduction of rental charges, employee wages, and the payment of debts stockpiled following the COVID, our monthly income is 5,000 dinars. It’s an ‘‘ honorable ’’ income but nothing is secured in the catering sector. »

Karim continues: “If there is a lesson to remember in the face of this” cursed “health crisis, it is that nothing is acquired and that anything can occur. Managing a living room tea like ours is a true challenge. We endured other fairs and have put the key under the door. “

Hiba takes the floor and proudly says to us: “We have been resilient. We held out. Now we diversify our services by permitting the organization of parties in the tea room. We work so that there is always an animation, particularly for Eid and opportunities like birthdays. We want to go beyond this morbid period نتجاوزو ايام “الكساد” “.

Hiba continues: “Our income is decent but it does not cover the daily expenses of the family home. The autism of the two boys is costly! ».

Hiba takes a teasing look and says to us, “It is”si Karim “who is accountable for purchases. He opens the tea room at 6 a.m. and closed it at midnight. In the middle of the day, I join him and take over so that he can rest a little and take care of the boys “

Hiba affectionately looks at Karim and says: “We have lived on this rhythm for 15 years already and I thank God for all that- نحمد الخالق على هذا. We operate to offer our children a better future. ”

A precious pregnancy

Hiba reveals to us that the couple got married ‘late’ ’. They had twins after several tries.

Anas and Heni are 13 years old and suffer from severe autism.

Hiba tells us about her boys: “My twins spend the day in a private center specializing in” difficult “cases. This costs us 2,000 dinars per month for 02 boys without calculating travel costs. We have no choice is either paying or “locking up” at the residence. My children are rejected where they go ”.

Karim speaks: “Apart from the tea room, we have no other source of revenue. For several years, we have been waiting for the liquidation of the paternal heritage. This inheritance would make it possible to ensure the future of boys and begin a small commercial project. This project will be able to improve our financial conditions and instill hope in the future. “

Hiba intervenes and adds: “Our life has radically changed with the birth of boys. We were desperate. We have consulted many specialists, notably in assisted medical procreation. Finally I got pregnant ”.

’Autism as a handicap and is not contagious

Hiba, visibly significantly affected, continues: “Three years after the birth of the twins, we found that they were suffering from severe autism. We consulted several specialists who were unanimous. My boys will not be able to communicate with others once they grew. And since then, the same question haunts me: does my children had a chance to defeat the disease and recover one day? ».

Hiba cannot hold back her tears. She insists on continuing the conversation and protests: “How to defeat this disorder in a country where there is almost no public center for rehabilitation and support! ».

Karim intervenes and speaks to us: “We do not have a specialized public center to house children affected by autistic spectrum disorders. Anas and Heni suffer. My children are incapable today to communicate with a person foreign to the family. Whenever there is a stranger, it is panic and often cries. The boys become turbulent. They are not aggressive, you know. They are just alone! ».

Hiba recovered and says us: “We are not an isolated case. Karim and I are among the many households who are faced with autism and the marginalization of this disease. We are left behind and there is no institutional support given to our kids. The former Minister of Social Affairs vowed in 2016 to make an autism census in Tunisia and to execute a strategy for the benefit of sick children. In 2022, there was nothing, in fact, the minister left, and the dream left with him. My boys are 13 now. What are we going to do? We cannot wait in vain ”.

Hiba continues: “While waiting for the State to recognize this condition as a real handicap and in the absence of public centers, the private sector was an obligation and not a choice”.

Hiba insists on taking a message: “What saddens me, even more, is the response of other parents who are afraid for their children” normal “. They are afraid of contagion. I tell them “autism is not infectious… My dream is to create a center to welcome my twins and the other children”.

Hiba adds: “With age, we no longer had the option. We had to take matters into hand no matter what it was going to cost. We called on speech-language pathologists, psychiatrists, physiotherapists,… ”

The family budget

• Monthly income: 5,000 dinars per month on average;
• Private specialized reception center for the 2 boys: 2,000 dinars per month;
•  household helper: 500 dinars per month;
• Cleaning products and other home expenditures: 1,000 dinars per month including 400 dinars for clothing;
• STEG, SONEDE and Internet invoices: 250 dinars per month;
• Pocket money for the couple: 600 dinars per month.
• For care costs and diseases, the family has social security coverage. The couple keeps a little money for emergencies and unforeseen events.

The family spends 500 dinars on average for Eid Kébir and the acquisition of the sheep. The budget varies depending on the return of the tea room.

Hiba’s dream

Hiba tells us about her dream: “I dream of change … I want to build a pilot center for children with autism. I desire the center to be well-equipped, with the right professionals. All children have the right to life without exclusion or rejection! Whenever the beginning of the school year is approaching, it’s the same nightmare. They are slamming the door in our faces, we are worse than lepers. Autistics are children above all, they have the same rights and must be taken care of. Why condemn them? ».

Hiba ends up saying: “Several desperate parents of Sfax place their kids in private centers unattended with mediocre services. This further degrades the state of health of children. But what to do ? ».