“It seems very harsh, but it gives me relief to say that I wish my son died a few minutes before me.”

Nobody teaches you how to be a father or mother, much less how to raise a child with autism.

This is what Ximena Agrelo thinks and feels, a 53-year-old Argentine pharmacist, mother of twins Vicente and Fidel, now 18 years old.

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Vicente is licensed severe autism.

Your speech is limitedutters short sentences of three or four words that are also difficult to understand for those who are not part of their environment.

Forks 100% dependent. He can’t do anything alone.

This is what worries Ximena most, not so much for today, but for tomorrow, when she is no longer here.

It’s a common theme among parents of children with extreme difficulties, who struggle with how they will age, who will look after them when they can no longer support them and what their other children or family members will have to face.

This is how Ximena tells her story and Vicente’s in the first person.

“Something is happening to Vicente”

I think it was the third fertility treatment we had. He was 34 years old. It was a very, very desired pregnancy and we had twins.

My mother, who was a teacher, when they were 8 months old told me: “Something is happening to Vicente”.

I didn’t notice anything strange, but as time went by we saw that there were things that weren’t right.

When we went to see a neurologist, he initially told us that it could be a lack of maturity and that he should start attending kindergarten.

But when we returned to the office he saw it and didn’t need anything else to diagnose it: it was autism.

It was a jet of cold water.

I have a clear memory of the silence that fell between Juan Manuel, their father, and I in the car during the half-hour drive home.

We didn’t even want to bring it up.

It was like an introspection, a mixture of emotions, of anguish, of what will be, of how it will be. It was a shock.

But at the same time, it was an empowering moment for me.

Fidel and Vicente were born 18 years ago. (XIMENA AGRELO).

I think I was very unconscious, much more so than other mothers I talk to who were depressed and laid in bed.

We separated from Juan Manuel and it was for the best.

We have a great relationship, but it was a parental intensity that you don’t get with a normal kid.

He is an excellent father, we live three blocks away and now we have a sport in which Vicente spent five days with him and five with me.

This also allows me to gain energy.

We also tried hard to focus on Fidel, who was tired of being second, of waiting.

He had to put up with a lot of problems for obvious reasons, so we also did this thing of having days for Fidel, doing activities alone with him, without Vicente.

Vicente was diagnosed with autism when he was 2 years old. (XIMENA AGRELO).

“They are not little blue angels”

The fear I always have with Vicente is that he has some illness or condition, because he has a very high pain threshold, and he also doesn’t know how to say what hurts him.

When I ask him, he always tells me the head or the belly, because sometimes he eats without limits. But specifically he doesn’t know how to tell you.

There are many influencers on Instagram who have some degree of autism and talk about how they know they are, and explain, for example, how noise affects them.

They are autistic, I have no doubt. And I understand that mothers must suffer a lot. But they can fall in love and, if they want, start a family.

This won’t happen to everyone. For Vicente, for example.

When they were 10, Fidel asked his mother how much they paid for his brother’s medical coverage, to find out what he would have to face when his parents were no longer around or unable to care for him. (XIMENA AGRELO).

I don’t know if he knows he’s autistic. He also doesn’t know about the evils in the world, and there’s no way he knows about them. Trust 100%. He does not know evil.

I’m quite rude when I talk about autism, and the reality is that if you ask me if I would like to have a normal boy, I say yes.

I would have liked not being a mother of a person with autism, because life becomes quite complex for you.

I have never romanticized autism and with Fidel we laugh because people always say they are little blue angels.

There are no little blue angels.

The reality is not that they are loving people, but what follows: much more than loving, but they give work that is complex, and as I grow and he grows, and as I become aware of finitude, I think What will happen to him the day I’m not there or his father isn’t there?.

One of the family activities is rugby; Both brothers practice this sport. (XIMENA AGRELO).

we need to talk about this

Unfortunately, there is talk of autism until the age of 16. Then it’s as if they disappear from the face of the Earth, and that’s when presence is most necessary.

We need to talk about this, because Vicente will not be able to live alone, and there are many Vincentians, many, who will not be able to live alone. The day we are not here, where will they end up?

I don’t want this to be a burden on Fidel.

When I was 10 years old he asked me how much did I pay for Vicente’s medical coverage, how much would he have to pay when we were not present.

That’s why I want to find a way to take care of my brother, but also to help Fidel.

My father was in a nursing home and we went to see him three or four times a week and at no point did we feel like we were abandoning him.

It is worth noting that “people with autism are poor”, yes, but the mental health Family is also very important and that is not talked about either.

Ximena Agrelo with her son Vicente on her lap when he was younger. (XIMENA AGRELO).

To women who have to be mothers of an autistic child, I would say: don’t stop working, for God’s sake! Keep being women, go out with your friends, go to the gym… because the reality is that if you don’t do that, your coconut burns.

Sometimes it happens to me that I don’t want to be with Vicente.

I once said “I can not take it anymore” and there was Fidel. And he tells me: “It happens to me too, sometimes I can’t take it anymore.”

It’s normal to not be able to handle it. It’s okay not to tolerate it.

It’s having a child for life

No person in the world was born to have a baby for the rest of your life, and that’s what happens to us parents who have a child with autism: we have a baby for life that we have to wipe his ass, make food, brush his teeth…

It is the stress that a child generates, multiplied by the number of years that the baby lives.

It sounds very harsh, but it gives me relief to say this: I wish you would leave five minutes earlier, or one minute before me. I’m more worried about leaving him alone or leaving him with his brother.

It’s something ambivalent.

The pain breaks me, I want it to be the last thing that happens, but deep down I’m relieved to think of him dying before me.

Therefore, the only thing I want is to be long-lived, to live until I’m 90, so that there, with Vicente being 60 and something like that, we can find a more suitable place for him.

Vicente loves stuffed animals. (XIMENA AGRELO).

I know a mother who has a boy with autism who is very aggressive, so she has to admit him to a psychiatric clinic.

So I imagine Vicente being overmedicated, that they won’t take care of him, that they won’t put up with him jumping and screaming outside.

That’s why I think, Who better to take care of him than us, his mom and dad?

If this sometimes drives us crazy, imagine someone who doesn’t have a loving bond with that person.

We are very lucky because we can pay for their care now, but the future leaves me frustrated because there is no type of state policy regarding these children.

I see mothers who have children aged 37 and don’t know what to do.

Autism is autism. Doing everything in your power does not guarantee that your child will be independent.

The first thing is acceptance. Do not freak out. Learn to have fun. Otherwise, your life will go away waiting for it to happen in a way that it never will.

No one is born prepared to be a father or mother, much less to be a mother of a child with autism.

Ximena Agrelo with her son Vicente on the beach. (XIMENA AGRELO).

Source: Elcomercio