Fed up with so much manipulation and lies
Mercedes Bernal, Moisés’ mother
My son Moisés is a child with Agenesis of the corpus callosum. I learned about his diagnosis in the last month of pregnancy after an MRI, and since it is actually a rare “illness,” not even the neurologists themselves knew how to specify the consequences of this fact for my child. Everyone around me experienced it with considerable sadness and anguish, because the prognoses were not very encouraging, given it was a difficult diagnosis. However, from the very first moment, I felt that I could not show even a hint of sadness for my son. I was aware that it would be a complicated path because you consider an infinite number of questions, uncertainty about his future, his environment, his sister… But you have to cling to the hope that everything will be alright. With my own hands, I accompanied him into this world, an unjust world, incapable of understanding many things, but where he wanted to participate, as he told me with that fixed gaze fixed on me, then holding on tightly to my chest.
At that moment, the neurologist who gave me the diagnosis and who wanted to be present at my birth, told me some words that marked me forever: “you have just lived and confirmed with a single gesture that this child is a fighter.” He said it, amazed, seeing how he diligently executed the sucking reflex despite what was expected. They marked me because I understood that it is the small details, those that no one notices, because they are lived with diligence and normality, that would make me enjoy and learn with my little one. And of course, I understood that we don’t have to have expectations, high or low; we simply have to offer them opportunities. He and only he would shape his life, and no one would have the right to put a “ceiling” on him. Our obligation, therefore, would be to allow him to develop his capabilities, although unfortunately he will have to prove himself twice as much for that right to be granted in many areas, especially in school.
Forgive me for this introduction, but I wanted to summarize the context we lived with Moisés a bit, to understand that he was going to fight and we had to fight with him. We started from minute one, hands to work: stimulation, stimulation, and stimulation. His evolution was surprisingly very good, and little by little, achievements were being made that we experienced with great intensity and emotion. We reached two years old, an important stage because it was the time when we took him to a children’s center (0-3 years). His time in this stage was very favorable, and I only have beautiful words for the professionals who worked with him. Moisés needed a lot of guidance and didn’t have much autonomy, but he was very happy and had a great time with his friends.
It was time to enroll him in school, and since he was also a child who attended Early Intervention, as per protocol, the local guidance counselors visited him. And I can confirm it was indeed a visit, because they observed him for about 10 minutes, during breakfast. A rather strange moment, instead of checking how he managed during other activities throughout the morning, such as circle time, which in my opinion would have been more interesting, as they can allow for observing and understanding a child’s responses, attitudes, and behavior. I must admit, however, that a single moment doesn’t describe a child’s reality in the classroom, because many factors clearly influence it, including, of course, being observed by four adults who are external and unfamiliar with the daily routines that children experience every day in their classroom.
I think it would be more coherent to trust the judgment of thatteacherwho has lived with the child daily for a whole year and knows his real needs perfectly. But no, this is unfortunately not entirely true because, to my utter astonishment, they intended to know these needs by observing my son at a moment which, to make matters worse, was a relaxed moment, free from structure, unlike any other activity that undoubtedly requires more attention, planning, and organization from the child, which is unfortunately what is demanded from minute one in the next stage of early childhood education (3-6 years).
That morning, I experienced the first encounter with an educational reality that showed me it wouldn’t be easy, and even worse, that what you study so much in teaching degrees about ‘the child is the protagonist of the educational process,’ ‘the system must adapt to the child and not the other way around,’ is pure theory very far from reality. I have always been passionate about working with children, but you really start to see the system’s deficiencies when you’re on the other side, and for now, I’ve put my professional life on hold to dedicate myself to my son.
My child was clearly progressing very satisfactorily because he was trying his very best, also receiving all the necessary services (neurologist, orthopedist, psychologist, speech therapist, pedagogue, and physical therapist), in addition to the work at home, always coordinated with all the specialists. With all of Moisés’s clinical reports in hand, having listened to his teacher’s suggestions, and without me even having had the chance to talk to them about him, they sat me down in the office, and the counselor literally told me (I will never forget her words): “Moisés is doing great, he has no social problems, and honestly… sometimes doctors make mistakes, so we’re not going to issue a report for him, and if as the school year progresses the kindergarten teacher alerts us to something, then we’ll start the protocol.” Then she dropped the bombshell that made me definitively change my idea about the education system and the false inclusion it so often boasts about: “Think that this is best for your child, because you wouldn’t want him to be singled out and labeled from the very beginning, would you?” I couldn’t believe those words; I didn’t understand how a counselor, of all people, would talk about labeling, talk about what was best for my son without my opinion, and worst of all, without considering Moisés, because she didn’t know him, had no idea about his difficulties and strengths, wasn’t considering what my child would actually need or not, she was just thinking about getting rid of a report, because April is a tough month for them, with so much visiting, so much paperwork, and so much protocol, and on top of that, she allowed herself the luxury of doubting a diagnosis that we had lived with and fought for three years, with many medical interventions, check-ups every three months by specialists, entire months with braces for his mild hemiparesis, when she so cheerfully commented that the child is doing great and that doctors make mistakes.
All of this, just to see him eat a sandwich sitting down, smiling and interacting calmly with his classmates. How much more I would have wanted my child not to need support, a sign that his development at school would not be a suffering for me or for him (imposed suffering, which no child should face in a school). I wish children didn’t need these kinds of “fits” that are the reports. The desirable and necessary thing is that each child is attended to according to their needs without segregation, exclusion, or singling out, as she told me, but I knew perfectly well that signing my consent for them not to issue a report would only be a waste of time. It would mean starting a fight all over again when school began, a fight we had already gone through. I knew it depended on the teacher to initiate a protocol once the need was detected, which in turn would depend on the counselor evaluating it (when they had time, because we shouldn’t ignore that they are always overloaded with work), and all of this would translate into months and months of waiting, during which the one who would truly lose would be my son, who would not be receiving his support to ensure everything continued to evolve favorably. It wasn’t about asking for resources for Moisés; I felt I had to demand his rights. What was the need to lose a school year and see how he developed? If everyone at that table knew that sooner or later he would need those supports, why deny them if it was his right?
Moisés was going to start the school year receiving four weekly sessions of pedagogical therapies in the afternoons, but it turns out that the counselor considered my son to be doing great and that we would see how things went. Of course, I argued for the need to start his schooling with these supports, considering that the process, in this case, should be the opposite: gradually phasing out resources if the child’s progress and response determined it. I told them that since they did not consider that assessment, I would request an evaluation from Cádiz because, no matter how much they tried to convince me it was best for my son, I could not sign that document. After a week, I received a call to come and sign the assessment, and when I went to pick it up, the counselor, although she gave it to me, insisted again that she did not agree. All of this is paradoxical because, at the same time, a good friend of mine with a child diagnosed with ASD was going through the same process, but in reverse. This time, her counselor “advised” her to enroll the child in a center that has a specific classroom. I say “advised” in quotation marks because, evidently, the future of that child had already been decided by two people who knew nothing about him, as in my case, in an office, after a ten-minute observation at his preschool and mainly based on the diagnosis. They used the dreaded phrase again for parents who experience functional diversity: “it’s best for the child.”
having reached the age of three, segregating him in such a cruel way, in my opinion, and depriving him of the possibility of imitating, of learning from his peers and not from four children of totally different ages, as well as their interests? How is it possible that professionals, in whom so many lost and desperate families trust, can limit and incapacitate a child’s development, arguing that it is for his own good, and giving false hope that they might be able to change their schooling modality in the future, when they know from experience that once a child enters a special education classroom, it is very difficult, if not impossible, for them to return to their reference group.
Sometimes they create an illusion, integrating, not including, the child for several hours a week, to somehow justify that they are progressively attempting inclusion. However, it happens that they coincidentally attempt to integrate children in Physical Education, Art, or Music, subjects that in many cases are not subject to a certain routine. Many children who need structure and anticipation get lost, and of course, they then have an excuse to attribute disruptive behaviors as reasons for not truly taking the step of including children for the entire school day. Furthermore, they demonstrate a lack of trust in a child’s capabilities by setting limits, considering it impossible to include them in other instrumental subjects without giving them the opportunity to prove themselves, simply because they have a diagnosis. This once again allows prejudices and valuations from previous experiences to come into play, without considering that two children will not evolve in the same way just because they have a certain diagnosis. I know several cases of children in special classrooms up close, and the mere fact of their existence as an “alternative” for them saddens me. Special classrooms are a clear example of educational failure to achieve inclusion, as I consider them one of the most segregating measures practiced, lacking effectiveness. Therefore, it is inconsistent to talk about an inclusive school when this type of classroom exists within it.
All these processes led me to always be very involved in defending children’s rights and in actively supporting inclusion, the kind that many professionals and families want; that we see as possible with work, desire, and will, but seeing this way of acting by one of the main agents of education, such as guidance counselors, makes it seem very distant. I don’t want to say, fortunately, that all guidance counselors act the same way, because I am fortunate to know great people dedicated to it, and they are our hope.
Moisés’s first year of school passed with relative normality, thanking his teacher for the support he received from the school’s PT (Therapeutic Pedagogue), a necessary resource as everyone confirmed, even the school counselor herself at the end of the year. In the following year, I found that due to the PT’s workload saturation, they had to take children out of their classrooms in small groups of three, a measure I strongly questioned as I considered it ineffective for them, as well as unfair. If for some aspects, when working on the specific program, they consider it necessary to do so more individually outside the classroom, what sense did it make then for the PT to have to work with three children at once? Of course, it is inconsistent, but these are measures that specialists themselves apparently have to accept due to not having more colleagues, and families too, who are made to believe that it’s normal, that they have to accept it, even when they see their children’s rights being violated, which makes me extremely indignant because it is cruel to always cut back on those who need it most. It must be said that it has an effect, because unfortunately, many families accept it, almost without question, sometimes out of ignorance that we have to fight, never accept such a discriminatory situation, arguing that it is what it is. This also happens because the few who dare to raise their voices and demand find themselves very alone, and the exhaustion is immense. Sometimes you think that the time and energy spent fighting is time and strength you take away from your child. Despite everything, some of us cannot help but find strength again and again.
Evidently, I met with the school principal to express my concern and to find out how it was possible that this situation, which was harming so many children, was not being remedied. To give you some context, it is a three-stream school and they had two PTs (special education teachers), one of whom was itinerant. As expected, she made excuses, explaining that resources are what they are and she couldn’t do much, although she promised to go to Cadiz and present the situation once again, this time in person. She even mentioned the possibility of me, as a mother, writing a letter and having the other families affected by this lack of professionals, in this case PTs, support it with their signatures.
Of course, I wrote the letter, referencing current legislation and how our children’s rights were being violated, but I didn’t consider it a request that we, the ‘affected’ families, should make. It was a need for the school, and I thought we would have more impact with the signatures of all the families in the school. So, I spoke with the AMPA (Parents’ Association), and we spent several weeks collecting signatures from all the classes.
Between paperwork and other matters, we already knew that we wouldn’t have a response that year, but the following year we finally started with two full-time PTs at our school. In the last year of kindergarten, the PT could finally enter the classroom to work with Moisés.
When Moisés was a baby, some mothers conveyed to me the anguish with which they lived their day-to-day with certain teachers, and I didn’t quite understand the purpose of those teachers’ approach to their children’s difficulties. And throughout the preschool years, I was able to experience that anguish firsthand. As with many things, we depend on the teachers’ willingness, but when we talk about invisible disorders, that willingness in many cases is conspicuous by its absence. It’s incredible how some still don’t understand that there are children with neurodevelopmental problems that involve impulsivity, attention deficit patterns, organizational difficulties, lack of autonomy, planning issues, immaturity in facing certain social guidelines and norms, etc., and that when these manifest, they need guidance, support, and understanding. They don’t need to be made to feel guilty for something they don’t control, and they need to train and learn at different paces. One of the things I was referring to earlier, about the daily anguish caused by some teachers, is when, day in and day out, they give you a report at dismissal about how little he’s working, how restless he is, how he doesn’t follow the rules, how much he bothers others, etc. You’re not aware of what these messages do to mothers until you live it.
And I ask myself: is that almost daily nagging necessary? Do they think mothers aren’t aware of our children’s difficulties? What do they hope to achieve with that? All mothers experience the moment of picking up our little ones with great joy, but these attitudes break the magic of that anticipated moment. Occasionally, any mom might experience it, when the teacher mentions that something happened with her child today or the other (something normal and even necessary) …, but there are moms who experience this almost daily. We want to go home eager for them to tell us, to share moments with him, but not to arrive already with the disappointment and helplessness that your child isn’t acting as expected and they practically imply that they don’t know what to do with him. I am his mother, I want to be coordinated with the teachers to find solutions, to work along the same lines, but there’s no right to that exhaustion, because everything they tell us happened during the morning, we couldn’t avoid it, and it creates a brutal sense of helplessness and hopelessness. They are children! And I’m talking about the preschool stage.
Now that Moisés has started primary school, I feel like the worst is yet to come. All summer I held onto the hope that his teacher would be empathetic, would consider that we are here to support each other, to work together and achieve the desired progress, as a team. All parents want this, of course, but those of us who live with functional diversity at home need and desire it with all our might, because our concerns, unfortunately, are not just about whether he passes or fails a subject. I have a daughter in fourth grade, which is why I know what I’m talking about; it’s not experienced in the same way, and this is where we realize there is no inclusion, because a change of stage, a change of professionals, should be experienced the same way by all parents, because we are simply talking about children who go to school to learn, to share, to have experiences, to develop their own being, regardless of their difficulties and abilities.
From the very first day of school, I asked my son’s new teacher for a meeting to talk about him, because Moisés is not that report and those guidelines posted on Séneca; those are orientations, diagnoses, and protocols, and I believe the most human aspect is missing to truly know and work with the child. She hasn’t given me the meeting until next Monday (November 11th). I haven’t had the chance to tell her about my son, what I’m working on at home, how we’re working on it, what his therapist Sonia Acuña is working on, who is eager to coordinate with her to understand that she is there to reinforce and help with everything she needs during those extra hours outside of school and to reach where she cannot, obviously. However, what I have received are her notes in the agenda. We are already in primary school, and we don’t pick up the little ones inside the school, as we did in kindergarten (at which point the teacher had the opportunity to give me daily incident reports about my son), but they have this “weapon,” the famous agenda. Even before experiencing it firsthand, I knew many testimonies about the use of the agenda, again for that daily nagging of families. One of those messages is curious because after describing how my son was always getting up, was restless, she told me that we (the parents) had to talk to him. What does she think, that we don’t consciously work on limits, consequences of actions, rules, etc., like any other mom?
If I had been given the opportunity before to talk to her, I might understand why Moisés does those things and what he needs. Please, mothers need to talk about solutions, to seek agreed-upon strategies; we don’t need that one-way information that, moreover, we already know. We’ve been in school for almost a month and a half, and apparently, the solution is in my hands, which is to talk to my six-year-old son. As I said before, unfortunately, there are teachers who are very poorly trained and sensitized to neurodevelopmental disorders, and when they have knowledge about a disability, they tend to generalize and rely on their experiences with a particular case. I am aware that the root of the problem lies in university; when we study our degree, attention to diversity is already treated as something external and exceptional. We have to keep learning and training because knowing a disorder or a disability doesn’t offer you the panacea of knowledge to know how to act. We don’t work with disorders, we don’t work with disabilities… we work with children, and that’s the center of everything, and from there, by knowing them, we can intervene. I believe the need to work as teams—families, teachers, and external specialists—is fundamental. Certainly, there can be nothing more beneficial for the child than to exploit all available resources to support and guide them on their path, and I believe families are a great resource to be exploited, in a good way, but not to be crushed. Maintaining a fluid communication relationship should not be understood as giving a daily report of everything the child doesn’t do as expected. Where is what he does achieve and do well each day?
Parents also need that information to motivate us and remain confident in our work, and when something doesn’t work, we just change it. Moisés, I am convinced (I already went through this stage with his sister), works many more hours a day than any child his age, yet his results are sometimes below any other child’s. But what about his effort? Isn’t it valued? He is a child who, when motivated, works very well, happily, with enthusiasm and eagerness. It breaks my heart to see those notes in the agenda that only reflect a child with limitations, but Moisés is much more than that. We cannot forget that Moisés was in Early Intervention at 20 days old. He has been with a pedagogue and a speech therapist since he was two years old, and now with his dear Sonia Acuña, who sees that spark in him to start reading, adding… We have to take advantage of this training and work advantage he has behind him and not focus on the fact that he gets up a thousand times… It’s because he needs to! Why do we say we include children with ADHD, ASD, Down syndrome, etc., but then we don’t understand some behavioral patterns as a consequence of their neurological alterations? Don’t they realize that it’s not their diagnosis itself that prevents them from seeing what he achieves, what he is capable of, but the disabling environment created around him by not intervening with him in the way he needs? It’s like asking a child who needs a wheelchair as a resource, to have, of course, the same equal opportunities, not to use it at school, even if it sounds harsh.
Therefore, if we do not understand the child, we are not including them; we are forcing them to fit into the expected pattern for everyone, and that is not equality of opportunity, quite the opposite. Until we understand that we cannot fit all children into the same corset, we will not understand what inclusion is.
All of this makes me reflect every day, and I understand that we are very far from true inclusion if we continue to talk about diagnoses and limitations instead of methodologies, strategies, intervention, and children. Of course, something I am very clear about is the lack of training and information in society in general. We need to raise awareness because ignorance makes us repeat life patterns, normalize injustices, accept inequalities, and settle for what is imposed.
Together with my friend Sonia Acuña, we have been entering all the schools in the town of Rota and its surroundings for over six years, contributing our bit, trying to inform, sensitize, and raise awareness among many schoolchildren, from kindergarten to high school, among their peers, those who spend many hours a day with children like mine and others, so that they truly understand functional diversity, comprehend why some children behave in one way or another that supposedly deviates from the norm; why unfortunately there are children who leave their classrooms several hours a week (unfortunately because the ideal is that no child has to leave and receive support where it is most needed, inside and not in a completely decontextualized environment); why sometimes they come to think they are very lucky to be able to take easier exams or, conversely, that those children are less than others because they are more “clumsy” and need help; why there are children who seem not to want friends, and it’s not that they don’t want to, it’s that they don’t know how.
We know that, unfortunately, many of these children with disabilities, especially those with less known and therefore more invisible disorders, are the perfect target for mockery, bullying, and harassment. But this happens because there is no awareness of differences, there is a lot of ignorance, and to respect, accept, support, and collaborate, they need information and normalization. We help to abandon prejudices in new generations, prejudices that for years we have accepted in our society about disability and that are doing so much harm to achieving inclusion. Making these invisible disorders visible, which even some teachers sometimes do not accept. We have also been fortunate enough to be able to go to several faculty meetings to convey the reality that these children and their families experience (create awareness).
We now have talks planned for the security forces in Rota, football clubs, and swimming instructors. Our commitment will always be to gradually bring about the longed-for shift in perspective that is so often discussed, at least as far as we can. To accept, one must know. These children are the future, they will work with our children. They will be their colleagues, they will be future teachers, and we must each do what we can to break down these social barriers. So that the idea takes root in our culture, in our thinking and way of life, that disability is not an individual problem, but something we must face collectively to stop systematically violating the rights of many children and adults. And the fight to prevent so many injustices from continuing is not the responsibility of any one group, but of all of us as a society, because diversity enriches us and makes us more human.
We have the hope and firm conviction that this awareness will one day not be necessary. We will not have to talk about inclusive education, because we will only talk about education, since as great professionals whom I admire for their struggle say, if it is not inclusive, it is not education.