School is not for everyone
Isabel, Alejandro’s mother
Part One
My son Alejandro was born in November 2007, and he “failed” his very first life assessment. From that moment on, we knew this would socially mark him, but we didn’t know the path that awaited us. He was born with an anorectal atresia malformation, MAR, to which was later added hidden spinal dysraphism at L3 and L2 (or what is known as spina bifida occulta). Mild syringomyelia, plagiocephaly, etc. After spending 10 months with a double colostomy and three surgeries, he began to function anally.
I am an early childhood educator, and at that time, I was in a very good place in my career. But I had to leave my job until Alejandro finished his cycle of operations and anal reconstruction, a period during which you learn about his malformation. You spend so much time in the hospital that you normalize everything. And the doctors see everything as so normal that, despite what your son has, he is “the most normal in the world” just as he is.
Returning to my job coincided with my son’s entry into the education system, in the 0-3 years cycle at a nursery school. Therefore, it is not a compulsory stage.
The family environment is, has been, and will be where inclusion, acceptance, and empathy truly exist. Even from early childhood education, circumstances arose that, being within the center, I managed to resolve, although she was never in my class. But my classmate ultimately didn’t quite understand, so I was there. A child who poops spontaneously cannot put on their schedule “Change diaper at 10 am and 1 pm” every day the same way. This made us somewhat aware of what awaited us when our son went “out there.”
Second part
The time came to apply for a school for my son in the 3-year-old preschool program, considering his difficulty controlling his sphincter and that starting school requires sphincter control. The decision to choose a school was based on his needs and the fact that I would have to go change him every time he was soiled, as that is the established dynamic inall schools. It is a hidden curriculum. Since none of this is included in a center’s project, nor in its ROF (Internal Regulations), but it is the first thing they verbally tell you when you arrive at the parents’ meeting. That’s why I call it a hidden curriculum. So we chose a school that was right across from the school where I worked.
Already in the admission procedure to submit the application, I had problems. They even refused to accept a medical report prepared for this moment by their surgeon. But when the day of the lottery for places came, luckily our son was admitted to the school, but when the lists were published he was left out, excluded for poorly justified reasons. They drove us crazy with the opinion, with the EOE (Educational Guidance Team), with the Department of Education, with the appeal of 2nd instance, your son should opt for special places, he should not compete for “normal” places with the others, etc. It was all a bit strange, difficult, and painful. Your son is normal, but everyone looks at you strangely when you tell them what he has. And they say he should be in “special” places.
All this so that he was finally relocated to a school that, according to the administration, was the most suitable, and was equipped with the necessary human and material resources for him, according to his profile. To this day, I say, according to the profile, that education professionals have a vision full of complexes, prejudices, and is flawed. It catches you in all this as a novice, ignorant, and trusting.
Even so, I filed an appeal that months later was approved. I could enroll my son in the subsidized school I chose, and it declared that I had been tricked in the enrollment process. But from the Delegation, in the office of an official from the Planning Department, they told me: “Madam, I am not going to place my son in a center that has rejected him from the very beginning, because if they have done that before he even starts, what will they do once he’s inside…” So for you, 5 months pregnant with your second child, that phrase becomes a “mantra” and you refuse to enroll your son in that first school you requested and that you saw as the best for him and for everyone.
And the adaptation period arrives. And you have prepared your son for everything you think he will face, knowing how to change clothes, knowing if he is stained or not, sitting on the toilet, flushing, cleaning himself, recognizing himself, etc. But neither you, nor your son, nor your husband, are prepared for the type of teacher or teaching staff there. Luckily, the principal at that time in that school in Seville called us to her office, listened to us, attended to us, and showed interest in knowing what our son had and needed. She set in motion everything necessary for him to be assessed for enrollment. She told us that she had everything prepared, that they had prepared a space with a changing table for him…
By then I already had my daughter and I was in full quarantine and breastfeeding. It was then that I had to face a meeting with the Guidance Team of the Seville East-Torreblanca Zone. I will never forget that day; even today I remember that office and those men. I went in thinking it would be a simple meeting, where I would find prepared, aware, and educated people. As soon as I entered, the man who I later learned was the psychologist was sitting at the back of the office, sprawled out, with his legs crossed in a very exaggerated way and with a cocky attitude. Behind a desk sat the doctor. He was an older man, with a timid, nervous demeanor and a low tone of voice. In the other corner was the aide responsible for attending to my son at the center. I had already had the opportunity to speak with her at length since the beginning of the school year. They gave me no respite: suddenly I found myself in the middle of an attack: the child had to be put in diapers.
The psychologist was the most direct in his attack and the one who put the most pressure on me: “If he poops a lot, you won’t bring him to school, will you?” “It’s better not to bring him if he poops a lot” “The child won’t smear poop on the bathroom walls, will he?” “The child will wear underwear, won’t he?” “The poop won’t fall out everywhere, will it?” “You don’t want to not come to attend to your son, do you?” Etc.
The doctor pointed out: “There’s nothing wrong with putting a diaper on the child. When my children are sick with a tummy ache, I put a diaper on them…” My eyes widened completely, as my son wasn’t sick with a tummy ache, like gastroenteritis…
My stance was firm; I wasn’t going to accept any of these proposals as they were being presented. That wasn’t what my son had or what he needed. They didn’t like that I didn’t accept their recommendations and that I tried to explain what Alejandro had.
Later the monitor left the office and returned with my son. Alejandro had understood that his mother didn’t enter this school because she didn’t work there. That’s why, when he entered the office, he said, “Mom?” These gentlemen continued the confrontation in front of him, and the little one reacted by soiling himself. Something that hadn’t happened on any of the days he had been attending school. Then they asked the monitor to change him. Alejandro didn’t understand anything; he could only see his mother in a confrontation with some gentlemen he didn’t know. It was no use having the child in that situation; it rather marked him.
A school placement report came out of that meeting, and when they called me to sign it, after I read it, there were things I didn’t agree with, and I said so, and they told me: “If you don’t sign it, your son won’t have a report and won’t be attended to. For your son to be attended to, you must sign inI agree.” And although I didn’t agree with everything that was said there, I signed thinking it was best for my son.
One of the things I didn’t like was that they wrote: “The mother refuses to have diapers put on the child.” This led me to go to my son’s surgeon and talk to her. She then wrote a specific medical report on this issue stating that the child did not require diapers because he could go to the bathroom whenever necessary. It wasn’t the mother’s whim or stubbornness. It was what my son needed. He was like any child who doesn’t yet control their bowels, who needs reinforcement of the habit and use of the bathroom, and who must be facilitated access according to their needs, which, by the way, are different from others. For his age, 2 and a half years old, he required adult supervision, support, and help. But no, this was not understood or done.
Mi hijo no tiene ningún problema cognitivo, sino más bien todo lo contrario, tiene buenas capacidades cognitivas e intelectuales. Su problema es físico, y a la vez se dan circunstancias sensoriales. Por aquel entonces, Alejandro se hacía caca de manera espontánea, como le sucede a una persona que tiene una colostomía. Como él mismo no sabía si se le había escapado la caca, le enseñé a mirar su ropa interior para saber qué le sucedía. A valorar lo que veía, a cambiarse y qué hacer con esa ropa sucia. Para evitar mancharse, Alejandro debía acudir al baño siempre y cuando notase “algo”, por lo que debía salir del aula a menudo. Como era pequeño, le dije a su tutora: “Si ves que se queda quieto, o que no se sienta, o que huele, es necesario que se cambie para que así el culito no se le irrite y porque es importante que se mantenga limpio y tenga un aprendizaje adecuado a su necesidad”. A lo que su tutora de aquel primer año me contestó que no sabía qué decirle ni qué tenía que mirar… A mí me pareció algo sorprendente. Además, cuando conseguí que mi hijo tuviera permiso de llevar muda al colegio, resultó que la tutora me dijo que en clase no tenía sitio donde colocar la “maletita” que yo le había preparado para que Alejandro se cambiara en el colegio. De tal manera que le hizo al niño llevarla y traerla diariamente. Y cogiéndola con 2 deditos todos los días, me la soltaba…
My son started being attended by the support monitor. She told me that, coincidentally, my son always soiled himself during his breakfast time, and while she was having breakfast, no one attended to him. To attend to him, this girl would take him to the classroom they had set up for a student with developmental delay who wore diapers. This is why they intended to unify them and attend to them by combining attentions, even though each need was different. The monitor would put the boy on the changing table and, even though he didn’t wear diapers, she treated him as if he did, changed his clothes, and prepared him for class. She didn’t take him to the bathroom, didn’t offer him to sit on the toilet, and there was no toilet. The bathrooms were often flooded or clogged.
Since my son was born, we spent many hours in the bathroom. There we had to do all the things my son needed, attend to all his needs. The fact of taking Alejandro to a place that wasn’t a bathroom or not following the steps he was familiar with at home, and that the hospital doctors had indicated to the family, caused him to start having an attitude and a character that caught my attention.
One day, Alejandro caught a bacterial infection in his stomach, so his bowel movements were very frequent. He didn’t attend school for over a month. I saw that he wasn’t doing well, and that he was caught in a situation that harmed his spirits. This situation lasted from September to January. I submitted a letter of resignation, as the school principal indicated. And it was a good decision. My son stopped feeling bad. His tutor, however, didn’t seem very happy; she called me frequently, and I had to be attentive.
In the last two years of preschool, a new teacher came. She came from a rural school with a different working dynamic. One day she called me by phone to explain everything my son had and tell her how to act. She offered to collaborate in everything she could, and she understood the situation perfectly. During those two years of preschool, my son was doing very well. He went to the bathroom when he needed to and changed his soiled clothes himself. Many times he did it in class, in a little spot his teacher had shown him to have privacy, or in the bathroom, depending on his needs.
The fact is that my son developed and matured according to his needs and his disability, and “integrated” his incontinence naturally. He was accepted by his classmates and felt like a member and participant in the class group. The preschool stage ended satisfactorily for everyone, and especially for my son.
Afterwards, Alejandro moved up to Primary school and my daughter to the second cycle of preschool. After the schooling experience and seeing how well those two years of preschool had gone, we decided to leave him at the same school where his sister would enter. Mainly, we believed there would be continuity, teamwork, and unity between preschool and primary school…
Third part
The beginning of first grade in its first trimester went well. Apparently, there was a traffic light in the classroom indicating whether the bathroom outside the classroom was free or occupied. Besides, you could go freely, without restrictions. Calm, relaxed, and confident because things were going “well,” we didn’t stop to think about anything. However, we were always vigilant, as the situation required.
It did not have a cafeteria service, so I left my children in a “lunchtime classroom” until I finished work to pick them up. I have to say that there wasn’t a day when the girls working in the classroom didn’t call me to tell me that Alejandro had soiled himself, that they had changed him, that he had gotten wet, etc. Starting from the second trimester, I noticed a change in my son’s attitude. There was an incident, and I noticed that my son wasn’t going to the bathroom at home. I insisted, and that weekend I saw that he wasn’t pooping. I knew that when he really needed to go to the bathroom, it would be unstoppable, but my son wasn’t listening to me.
As I expected, on Monday, during school hours, Alejandro needed to go to the bathroom and his teacher kept him. And, without any control, he ran out. When he reached the toilet, it had all escaped. Alejandro cried, he cried so much… and all he could say was: “Mom, Mom!” He called for me as if I were there, by his side. He knew no one would help him with this.
A support teacher who was nearby heard him, approached, and saw the situation. She then called his teacher, who hadn’t missed him in class at all, and when she arrived at the bathroom, she stomped her feet, shouted, and said all sorts of things to my son. She flew into a rage. She sent me his dirty clothes, with everything in my son’s backpack, and without a single word to us. For me, seeing those clothes was normal; I’ve spent my whole life washing his stained clothes. Obviously, such an embarrassing situation makes you feel ashamed, and so that her relationship with my son wouldn’t be “bad,” I sent her an apology. But she could have called me to come and attend to my son. What happened then began to “count” for something in 5th and 6th grade, because from then on Alejandro became silent and angry. His personality started to change.
As the cold left and the spring warmth arrived, I noticed when picking him up that he smelled like a train station toilet… I had already been observing. And I thought it was my son who didn’t want to go to the bathroom.
At home, he started to stop going to the bathroom, and it seemed like there was a barrier preventing him from entering. It turns out that his tutor denied him permission to go to the bathroom, so my son would urinate and defecate on himself. He started to urinate on himself, but he did it little by little so as not to get too wet, so they wouldn’t notice in class and he wouldn’t have a bad time. The tutor, with her attitude, caused Alejandro to develop a bad habit of sphincter control, which not only affected his health but was also one of the humiliations that most marked his self-esteem.
I started to observe, to become aware, and I saw that something was happening. The school year was tough. My son missed class due to illness, suffered from periods of incontinence that prevented him from attending, and new problems began. Missing class meant Alejandro didn’t know about exams, circulars arrived home, he didn’t receive photocopied materials, etc.
Once the first year of primary school is over and the holidays have begun, I start working with my son on the habit of going to the bathroom, as I had always done. Then I find a child who didn’t want to sit on the toilet and didn’t even want to cross the threshold of the bathroom. After all the hours we had spent working on that with him! Although his incontinence problem was fecal, until then there had been no enuresis problems. But it was clear to me that it was because my son pooped so often that he also peed, in addition to doing it sitting down and never standing up. Since the change of stage, my son started doing it standing up to avoid entering the school’s toilet cubicles due to the experience he suffered. Because of this, everything becomes complicated, as until now pee and poop were linked. In addition to his malformation profile, which was operated on for the reconstruction of an anal fistula. It was a very hard summer. A battle to fight. A state of not knowing what was happening, because I thought that by giving him re-education and redirecting the situation, he could overcome it.
When Alejandro started 2nd grade of Primary school, I requested an Educational Assessment to be carried out for him. This was to raise awareness and take measures regarding what had happened, especially after the poor performance the previous year. That’s when I filled out the questionnaire for parents. The experience I had with the assessment for early childhood education made me fill it out calmly and with intention, and I went online to find out exactly how to do it. During my search, I found a “Questionnaire for parents of psychoeducational assessment from the Delegation of Malaga,” which turned out to be exactly the same as the one I had in my hands. I started comparing question by question, and to my surprise, I realized that the questions related to sphincter control had been removed from the questionnaire I had. That’s when I became alarmed and asked myself: What’s going on? Don’t the children in Seville poop or pee?
I believe that even a child with a different pathology than my son’s can have different sphincter control habits than others. That’s why I highlighted this issue in the questionnaire, and I added some annexes where I included all those aspects that needed to be included and that were not present in the Questionnaire, and therefore, families could not provide.
To the request that my son be given a Schooling Assessment and that Questionnaire passed through the registry, I never received a response. They ignored us, they ignored my son, and no intervention was made by the EOE or the school administration. The only thing the EOE doctor said was: “His tutor considered that the best thing for the child was to make him endure, and therefore, not letting him go to the bathroom was the best…” I don’t know, but I think this woman played both sides, she sold me an image that she listened to what I told her about my son’s problem, and when she was with the child, she had a different attitude.
It was a situation that deeply affected Alejandro, to the point that we had to take him to a psychologist, and Social Security referred him to Mental Health. There, a psychologist followed him and issued a report stating that this experience had traumatized the child and had harmed him. This came years later, as until then my son was in shock and did not express how he felt.
During that school year, enuresis was both diurnal and nocturnal, so Alejandro was referred to the hospital’s Nephrology department. There, he underwent a study and follow-up with a micturition calendar, and was prescribed a treatment that he could not continue taking because it made him feel unwell. The school did not collaborate in anything nor did they show the slightest interest.
My son wet the bed on a very large scale, and following instructions, I had to wake him up. The amount of pee was so large that I had to wash him and change the bed. There were nights when this happened at 2 AM, 4 AM, 5 AM, 6 AM… There were days when it happened three times a night… Despite this, the next day he had to get up early to go to school. Of course, a child who stays up all night does not start from the same conditions as the rest of his classmates. It was horrible at home, imagine how many loads of laundry I could do.
My son didn’t want to be with that person; he withdrew into a state of permanent anger. It was very hard. To that, we have to add a choking incident he had that course, which almost caused him to drown. We finished the second course as best we could, hoping that the next year we would have a new tutor who would turn everything around.
Quarter
During the 3rd and 4th grade school years, no improvement occurred. Alejandro had been in classes for a week when I had to go talk to his tutor because he was pushed and kicked by a classmate. At that time, my son was just over a meter tall and weighed 19 kg. He was very weak. But none of that seemed to matter to anyone.
Alejandro has a hospital admission at the end of each term and misses a lot of school. Added to this are the days he doesn’t attend because he can’t control his sphincters and has very frequent bowel movements. He misses out on dates and grades for exams, doesn’t follow a classroom routine, doesn’t receive photocopies or circulars, doesn’t know about scheduled matters, and doesn’t attend field trips, etc. So we started working with him from home, as no action or interest was taken by the school.
His tutor called me constantly to pick him up, sometimes even at 10 in the morning, when Alejandro had only been at school for an hour. I had to start making up to 6 trips to the school daily. The tutor even told me that my son was best off with his mother. She said she wasn’t a doctor, and the previous one he had told him she wasn’t his mother. My son already has a good medical team and also has a mother; what he needs is a good teacher who supports him, understands him, helps him, and accepts him…
One day, they scheduled an outing to a nature reserve to spend a night away from home at the end of 4th grade. I requested a meeting with the teacher, where I asked about the adaptations for my son. To which his teacher replied that the outing was planned for 4th graders, an age when they already control their bladder and bowels.
These two years were also very difficult, as for my son, missing class predisposed him to be one less in the class. He didn’t want to go to school; he preferred to stay home. He didn’t feel like he was part of his class group, nor was he accepted by his teacher. And he remained soiled at school without changing his clothes. Soiled with feces, he took exams, was in the playground, did Physical Education, etc. Fearing that they would smell him, that they would watch him in case he smelled, and so he could change, he told his teacher he felt unwell and had a stomach ache. Absences and leaving school early were frequent. His teacher did not take any specific measures, and his class was dominated by “the law of the strongest,” as those who attend have more priority than those who don’t. Faced with this situation, I decided to attend a meeting with my son to speak clearly so that measures would be taken regarding this situation and Alejandro would be helped. My son, who was most interested in resolving the situation and suffered from it the most, decided to attend. I told the teacher that my son needed help, and she replied that she would not help Alejandro with anything. That she was very sorry, but no.
The Education Inspectorate carried out various actions that were of little or no use, as his tutor was adamant and refused to acknowledge my son’s needs. She only considered academic matters.
We insisted again about the report, this time guided by the inspector regarding the Access Adaptation (ACC). But it seems no one knows what this is. Furthermore, the school tried to deceive us by presenting documents that were not from the Ministry, but from the school itself, making us believe it was an ACC. In it, the tutor filled out a series of questions stating that “Alejandro has no spinal problems, no malformations, and that everything is ideal and fantastic.” I refuse to accept that and express my disagreement, requesting at all times that the March 8th Instructions be applied, which cover what my son has and what needs to be done administratively for the Ministry of Education to recognize it, with all its implications. No one applies them, reads them, or knows them. And worst of all, they try to fool the family. It’s outrageous!
Fifth part
For this course and after the struggle we have been through, we managed to get an adaptation made on the second floor of the school and there is a disabled toilet. My son has a 33% disability recognized, but that has been of no use to me, since the school principal says that because my son’s disability is physical… It’s incredible what people with so many prejudices and a total lack of empathy can say. I have his comments and my responses in writing, since that’s why I used theConvention on the Rights of Persons with Disabilities.
5th and 6th grade were transition years to be able to leave that school that suffocated, crushed, and humiliated my son. A school he wants nothing to do with, that he doesn’t want to see again, and that he has banished from his life. We have tried over the years to leave that school and the administration did not make it easy for us, as they did not allow us to choose the center. They denied us the one we wanted, even knowing the situation.
My son did not go on that fantastic end-of-year camping trip in 6th grade. He himself said he didn’t want to go because nobody was going to help him, especially with “his thing.” He said, “Mom, they’re going to leave me stranded, and how do they plan to handle my situation?” Alejandro was at that time learning to manage Peristeen, an anal irrigation system. Its use requires a series of conditions and a bathroom.
School is not for everyone. We have an exclusionary education system that is not educating society, but rather is only transmitting technical knowledge. It does not offer socialization to human beings, nor does it teach them to develop habits, skills, customs, ways of acting, values, etc. Therefore, and after my experience and my struggle, which is documented in numerous registered writings, I was clear about what the center where my son would complete Secondary school had to be like.
Currently, my son is in his first year of ESO at a subsidized private school. He goes there very happy, feels included, attended to, and supported. They are working with him, and it is showing. His health during Primary school deteriorated, leading to numerous medical appointments and tests that we still have today. We had to resort to a lawyer. Socially, it is a taboo subject, it causes social rejection at all levels, and unfortunately, there are many children who, like my son, are not accepted or included because of their incontinence.
Notes
- Regulations for Organization and Operation.
- Educational Guidance Team.