Interviewer
Three days of online classes and two days in school.

When you say you don't like online classes, could you tell us what the problem is with such classes? Have you experienced it?

Mansoureh
Look, as the mothers of autistic children, all we try to do is to have our children get involved in the society, in gatherings, so that people would accept them and they would accept people. But when everything gets online, they will return to their lonely world, which is very bad for their future life.

 

For autistic children or those with special needs, I think COVID-19 was the worst thing that could have ever happened and that has made these children fall behind for many years.

 

Interviewer
Perhaps it is very difficult for the schools not to be able to reach their goal of getting the child out of their solitude and having them make connection with the world outside.

Mansoureh
Exactly. For autistic children or those with special needs, I think COVID-19 was the worst thing that could have ever happened and that has made these children fall behind for many years. The therapists' and teachers' effort is ruined.

Interviewer
Is there anything else you could say about the effect of such online classes on Arina's progress? I mean negative effects.

Mansoureh
Well, in online classes, Arina knows she can do whatever she wants as the teacher does not have access to her, and she can easily shout. Besides, I should always be next to her and help her, while we don't want things to be like that. Arina should not have me in her classes. She should listen to her teacher. For example, her teacher wouldn't let her watch movies in the class. But during the online class, Arina has her phone in her hand all the time and shows it to the teacher in a way as if she says, "look, I'm doing what you didn't allow me to do in the class. "

Interviewer
Do you feel like the school is supporting you in a way, given that the classes have become online? How are do they cooperate with you in this area at all?

Mansoureh
Definitely. The school is helping me, but there's nothing they can do about it. For example, just think what you can do in an online class. It's like after years, I say I want to hug my dad, while I can only watch him online. I can't have any feeling of that hug. This is exactly what happens in the online classes. They're virtual. We can't do anything. We're just showing to Arina that the classes are held. But Arina doesn't care at all. She doesn't care.

Interviewer
What do you and Mohsen do for these classes to be held in a good manner at home? How are the online classes held?

Mansoureh
Before the classes start, I say, "wow Arina's class is starting now! Let's bring Arina's iPad and sit in the class." I try to make it exciting. I clap and say, for instance, I am very happy about this so that Arina is convinced to come and sit next to me until the class begins. I tell her we can hug each other anytime during the class. Arina likes to show others how much she loves me. She wants to kiss me. She keeps kissing me during the class. Her poor teacher on the other hand shows her iPad and stuff like that to tell her what she has in the class.

Interviewer
OK. Has COVID-19 affected your job or medical aids or any other thing in your life.

Mansoureh
It has definitely affected many things. First, you can't go and visit your doctor face to face and tell him many things.

Second, especially for Arina, she hasn't seen her doctor at all during this period. Only her medicine was refilled. It had many, many effects. I'm talking about negative effects, not positive ones. It had many negative effects.

For example, Arina would go to see the doctor more easily. I mean we took measures so the hospital and the doctor wouldn't be scary for her. Now, the school... the pharmacy has the same pathway as Arina's hospital when I want to get the medications.

You have no idea. From the first step until we get to the pharmacy to get the medication, Arina only screams and tell us no, no, no, don't take me to the hospital again.

Interviewer
I can understand. It must be very difficult for you to deal with this situation.

Mansoureh
I just hope things get back to normal. We will get back to our normal life with a big challenge.

There's something else about our workplace. From the first day I didn't work until July 1, I was working online. Working online with an autistic child is really difficult. Really, really, difficult. I can say working online with an autistic child made me cry.

Interviewer
Could you tell us how it is when you work online from home? You have other responsibilities as the mother. How is it?

Mansoureh
The biggest issue, for example, one of the problems I'd like to share with you is that when we're in a ZOOM meeting, Arina knows I am working and I'm in a meeting with my colleagues talking about an issue, Arina starts to shout, her movie's volume is already high, she shouts at the same time. All of my colleagues told me to mute the microphone.

Or for instance, we had to make a video. Arina wouldn't sleep without me. I mean if I move, Arina wakes up. Now think about it. I had to repeat a 2-minute video 10 to 15 times until it is made without Arina's voice in it.

Interviewer
I can guess how hard it is.

Where do you get the most information right now?

Mansoureh
Virtual pages.

Interviewer
You mean you search online?

Mansoureh
Yeah.

Interviewer
Is it getting difficult to maintain social distancing? I'm talking about keeping distance six feet from others.

Mansoureh
Arina can't learn this. Arina always wants to go ahead. So, I always have to keep her and say, "Don't go near people Arina, don't get close." But she doesn't have any problem wearing mask, because she knows they wouldn't let her in, and she can't shop if she doesn't wear mask in a store. But it's really difficult for us to keep the six-feet distance, because Arina wants to get close to people. People don't like it. I wouldn't like it either if someone I don't know gets close to me. That's why it's difficult. For example, there's a line outside the stores. Autistic children can't stand staying in a line.

Arina gets mad in the line. For instance, Walmart is Arina's favorite store. When Arina has to wait in a line in Walmart, she makes everyone crazy.

She even claws at people or pushes them, and people get scared in such situations.

Interviewer
Are there any other experiences you would like to share with us?

Mansoureh
For example, imagine you go to a store and then Arina can't find the things she wants to buy and starts to act angrily to others around her. People stare at me in such a way that I have never seen in the United States. People stand watching children with autism with such a scare. For example, my daughter, Arina, screams out of anger and people stand in a corner and keep watching.

Interviewer
Do they stare at Arina?

Mansoureh
Yes. For example, they stare at her and then they go to a corner and stand watching her. They ask if I am bothering my child and thus my child is screaming. And since Arina notices her screams are important to people, she starts to scream in stores.

Interviewer
It's a really tough situation. And now the issue of social distancing is making things harder.

Mansoureh
Exactly. When Arina sees I am busy somewhere and I can't pay attention to her, she does something to attract my attention. For example, right now she went into the bathroom for no reason and took off the pants she is wearing and won't put them back on to get my attention.

Interpreter
We want to talk about using masks. Have you and your family been able to find masks? Don't you have any problems?

Mansoureh
At the beginning, we couldn't find masks. At my workplace, they gave me a few masks. I just had them. There were three or four masks.

Then, it was impossible to find a mask outside. Then, a colleague made a cloth-made mask for us. But the masks were not good. They were for example too big. They were too big. I don't know what size she had made but they were too big. And then Bayada Office gave us masks and hand sanitizers.

Interviewer
How do you usually communicate with your friends, family members and acquaintances?

Mansoureh
I always call my family in Iran through WhatsApp. I rarely talk to my friends on the phone. For example, once every week. We used to see each other once every two weeks. It was so good both for me and for Arina.

Because children love Arina a lot.

They take care of Arina. They don't bother Arina. And thus, Arina enjoys being with them. But we had to avoid seeing each other for a while.

Interviewer
Do you have a problem with phone calls or do you prefer seeing people in person?

Mansoureh
In some cases, it is much better to see people in person, especially for us as we are not so good at speaking this language. When I talk to people in person, I understand them better compared to through the phone. But COVID-19 has taken all these stuff away from us.

Interviewer
Ah, look, ah, because of the issue of English language, you think it is harder to do your stuff on the phone and achieve your goals.

Mansoureh
One hundred percent. One hundred percent. Even for us, as we are English learners. When we are at work or in society, we have to talk to people in English and listen to English. When a problem happens, we tend to communicate more with people who speak our language. For this reason, it is even difficult for us in this issue.

Interviewer
How about for Arina? How is it?

Mansoureh
Well, for Arina, it is one hundred percent worse. Because when Arina was at school, her teachers talked to her in English and she was with English-speaking people for at least five to six hours a day. It was very helpful for Arina. But now, Arina is hearing Farsi 24 hours a day. Arina is not even ready to watch English movies. It rarely happens and she always hears Farsi.

 

People with autism should be in society more often and thus such children will be hurt more.

 

Interviewer

How do you see life after COVID-19?

Mansoureh
Well, people will be scared for a few years. The same fears that have always been. But I think they will slowly learn to accept it. But a few people like my daughter will be hurt more than anyone. People with autism should be in society more often and thus such children will be hurt more.

Interpreter
Considering the effects of COVID-19, [have] policies adopted by schools or educational institutes changed considering the conditions or not?

Mansoureh
Look, with what schools have taken into consideration, I can say they are even horrible for ordinary children. I mean even ordinary children are beginning to be more isolated. Imagine, they put a child in a class in which the child is surrounding on two or even three parts with PVC shields so that he/she is kept away from his/her friend.

Mansoureh
The child will be unconsciously only himself/herself. In other words, he/she will accept isolation

With COVID-19, we are making people ... we are pushing people towards isolation.

With all these recent gadgets, all children are ..., for example, when we were children, we all played in groups. But now, children have laptops or tablets or even a smartphone and play alone. With the emergence of COVID-19 and with the social distancing, everyone is pushed towards solitude and isolation.

Interviewer
What has surprised you now?

Mansoureh
Uh, some people have not accepted that COVID-19 is real. Some people believe that COVID-19 is a political game. But we are witnessing people dying all around the world.

This is something that has affected the world.

Interviewer
How do you find the US response to COVID-19 compared to Iran?

Mansoureh
The US did not do a big job. For example, it started to take action too late. Thus, you can't say, "The US, wow." But compared to Iran, it's 'wow'. For example, when you wear a mask here, people do not spit on you or laugh at you. But there are a few cities in Iran in which people spit on you if you wear a mask. It's still the same and because people did not have money and were not financially supported, they had to return to work.

2000 people a day contracted the disease. Something I liked was the performance of the New York mayor who said ... I tell people the truth.

And many other helps. For example, they gave food to children at school. NAC sent me many addresses or when I called Darya, I told her I had nothing at home. Darya brought stuff from NAC for me. They never did such a thing in Iran.

Mansoureh
Or they supported us with the house rent.

Interpreter
Are there anyone in your community badly affected by COVID-19?

Mansoureh
I can say I lost my job. Losing my job hurt me a lot.

 

Based on Iranian culture, you hug people to greet them and kiss them three times ... There was a lot of affection.

 

Interpreter
Has your lifestyle changed because of COVID-19?

Mansoureh
Based on Iranian culture, you hug people to greet them and kiss them three times, ... There was a lot of affection. People visited each other a lot. In my county, after I lost my mother, my aunts used to visit my sister once a week. My sister used to hug my aunts as they smell like my mother. But now my sister has not seen my aunt for five months. Now when they see each other, they raise their hands. In our culture, this happens when people are too far from each other. They do it only when they see each other from far away.

They don't kiss each other anymore. They don't hug each other.

Our mourning ceremonies must be very crowded. For example, in the US, they should invite you. But in Iran, the door is open for all people to join the mourning ceremony. But now no one goes to such ceremonies. They do it either on the phone or by sending flowers to each other. I mean they send each other bundles of flowers. It was quite different in the past.

Interviewer
Do you see anything positive about COVID-19 to tell us?

Mansoureh
When I arrived in the US on April 1, I mean I came to the US on April 1, 2015 and I went to work on May 21. Before that, I used to do some volunteer work. On May 21, I went to work. I didn't have any time to spend with Mohsen and Arina together. I mean we were not at home for week together.

I couldn't make the food that I like because of lack of time.

It was [a] positive point. I could stay home. We love flowers. We could plant flowers, take care of them. I did all of them. I cooked things that I liked. I made cakes and breads that I liked. I managed to make them all for myself.

Life has both positive points and negative points. You should look for the positive ones.

Interviewer
Last question. Do you have any messages for families with disabled children, particularly now that we are dealing with?

Mansoureh
I have always told myself that God has given us special needs children because He has seen in us a power and ability. He has given us such children because He has trusted us, and God has given His angels to us because He has selected us to take care of them. So we can take care of the in the best way possible.

Interviewer
Is there anything you want to add?

Mansoureh
These days will pass. They will be memories. We will talk about these days one day.