In this candid account, Kycilla Martins, a devoted mother, shares the profound journeys experienced by her and her daughter Allicy, who faces challenges associated with the autism spectrum. Through her words, we are led through the ups and downs of this trajectory full of learning and overcoming.
Kycilla describes her meaningful conversations with professionals and others who share this path, as a young person with ADHD and ASD. She explores the complexities of the anxiety attacks that plague her daughter and how they are similar to those of other individuals, like the one she spoke with.
At the heart of his reflections is the struggle against the lack of empathy and understanding of the community in which he lives. She delves into frequently used terms such as “special” or “sick”, emphasizing how these expressions often fail to capture the true essence of autism. Kycilla highlights the importance of education and how frustrating resistance to accepting knowledge is, especially in educational institutions. Her dedication to providing tailored resources for teachers and parents demonstrates a genuine desire to make a difference.
The mother reveals intimate and challenging moments with her daughter Allicy, exposing the struggles she faces in crises of dysregulation. She describes his loving attempts to calm her down, as well as the impacts of noise and lack of community empathy. Kycilla struggles to educate others and confront prejudices, while respecting her daughter’s space to face her own battles.
As she shares this journey, Kycilla highlights the importance of collaboration and the value of mindset shifts. Her account of her experience not only inspires but also educates, shedding light on the reality of autism and the need for understanding.
How would you describe the crises or dysregulations that your daughter experiences? What are the main challenges she faces during these times?
I believe it’s like an anxiety attack. She knows she can’t do some things, she knows she’s going to feel bad later, but she can’t control it. As a mother, I feel frustrated that I can’t make her feel better quickly and eliminate her discomfort. Furthermore, it is extremely tiring. The challenges she faces are visible as she tries to express what she feels. I see the exhaustion in her eyes and her desperation to ease what she’s feeling.
Can you share more about your daughter’s experience during a shutdown crisis? How would you describe it and how does it affect you emotionally?
The “shutdown” crisis is the “system shutdown” crisis. It is the crisis that occurs internally. At these times, she lays down on my lap, puts her little finger in her mouth and plays with her hair, staying there for at least half an hour, completely still. From the expression in her eyes, it is noticeable that, at that moment, she does not react to anything at all.
This crisis is the worst for me as a mother, as I see the sadness in her eyes. At that moment, nothing, absolutely nothing that I do, is going to get her out of that world of detachment. I prefer her to scream or get angry, I prefer the “meltdown” crisis.
How do you deal with negative comments or people’s lack of understanding of autism? What has been the impact of these interactions on your daily life?
I don’t care too much about negative comments and focus on families seeking knowledge or help. The lack of information about Autistic Spectrum Disorder (ASD) is a big problem, as many people do not know how to deal with a crisis or with a child on the autism spectrum. Often, they try to resolve everything aggressively. The impact of these interactions on social networks has given me a lot of knowledge about other disabilities and made me seek to learn more about some subjects.
How do you believe the lack of knowledge and empathy in your community affects the inclusion of children with autism? What steps do you think would be needed to promote greater awareness and support?
The lack of empathy and knowledge affects everyone, but in ASD I see that it affects a lot, as they do not understand how the brain of a child with ASD works and confuse crises with mere tantrums. I believe that there should be lectures in schools, as I see many adults and young people without knowledge, but ready to attack, both the child and the family. I believe that if each municipality had an information point, it would also help a lot, something focused on neurodivergence, or neurodiversity.
How important is it to have specialized professionals and therapists involved in your daughter’s life? How do you see the positive impact they have on her journey?
Therapies are essential for a better development, but many parents believe that only the therapies will develop the child. But the therapies help us, parents, to learn how to perform what is proposed in 40 minutes of therapy. Multidisciplinary teams are very important to give us the necessary support to work on certain difficulties.
But with the therapies, Allicy gets ways to communicate and calm down. Without the therapies, she cannot express herself. The therapies are able to redirect and rearrange her thoughts and emotions.
How do you approach the issue of inclusive education for your daughter? What challenges have you faced in this regard and what do you believe can be done to improve school inclusion?
I believe that there is a lack of knowledge even in inclusion, as I have come across situations in which education professionals believe that inclusion is just being in the regular education classroom. There is still a long way to go to say that we have a reasonable inclusion in my municipality.
The lack of inclusion caused me several wear and tear, with denial of enrollment, lack of adapted material, lack of professional support. For all know the law or take knowledge of it, but do not fulfill it. Adults have to be included, because children understand children, and it’s beautiful to see Lili’s colleagues trying to help her with her speech, or when she starts to have a sensory crisis due to the noise, they themselves already seek silence for her. to improve. There needs to be more rigidity in the area of education and supervision by the competent bodies regarding professionals in the classroom.
What strategies have you adopted to help your daughter communicate and interact with the world around her? What were the results of these approaches?
I always tried to develop Allicy on a daily basis, allowing her to have contact with the real world. I don’t deprive her of going places, even knowing that this can cause dysregulation. I prefer to take her and show her how to react to what she is experiencing. Allicy has always had contact with other children, books and places. I always tried to include her in frequent activities of typical children. With all the exposure that Allicy has had, and with many families seeking guidance on how to handle their own children, I feel that this approach was the best choice. Despite the difficulties and limitations, Allicy managed to develop very well, improving her motor coordination, speech and empathy with others. She is very sociable and always looking for interactions.
How do you deal with the frustration and stress associated with situations where your daughter is misunderstood or discriminated against? What would you advise other parents in similar situations?
This is a complex question. Currently, I seek therapy to better deal with these feelings and not allow them to affect me so much. I always seek the law as the first instance to resolve such situations. I believe this is the best approach as it forces people to respect. I study this subject daily to gain discernment and know how to deal with and react in these situations. I always advise parents who come to me after receiving the diagnosis. I tell them to seek therapies and apply the teachings in their daily lives. I also encourage them to study rights so they know how to respond politely and enforce the law against discrimination. I advise everyone to understand how to react according to the law, as this is where we find support to gain the necessary respect.
You mentioned using a cochlear implant to help your daughter hear. How has this contributed to the development of her language and communication?
Allicy was diagnosed with four conditions: ASD, ADHD, apraxia of speech and deafness. She uses a cochlear implant, which allows her to hear. Currently, she can hear like a person with normal hearing, however, she faces limitations in understanding, association and speech. The cochlear implant enabled her to interact through speech. Despite still being non-verbal, as her language and association repertoire is limited, the implant allowed her to learn and develop in the auditory and communicative scope.
From your personal experience, what are the biggest changes you would like to see in society in terms of understanding and supporting people with ASD and autism?
I wish people could see that meltdowns and screaming are not tantrums. Today, I can largely ignore this, but I have had many embarrassing situations where I had to explain that my daughter has ASD and that what we were witnessing was a crisis. She understands, but cannot react differently to certain situations. There is a lot of judgment and little help, and I see many families facing similar challenges. Public places like malls or restaurants should offer some kind of support for families, with people trained to deal with and help in these delicate moments, instead of just observing. It’s happened to me that my daughter got upset in a mall and the security guards were just watching, not helping.
Obviously, even feeling the pain of children dealing with this syndrome, we can never scientifically understand exactly what they feel. In your case, as a mother, what did dealing with autism teach you? How has your life changed since motherhood with Allicy?
My daughter’s ASD, added to all her other diagnoses, shaped me a lot. You’ve made me a woman I couldn’t have been if it weren’t for you, Allicy. Today, I can respect even what I don’t understand. Autism taught me to look at the world with compassion and empathy, without judging, because we don’t know the reality of each individual. Allicy has transformed me into someone more human, with all the flaws, but who is always looking to improve so that, who knows, maybe reach the incredible human being that is my daughter. It takes me to a level beyond imagination, as I need that growth to convey understanding to her and to make her understand her own feelings and the feelings of others in certain situations.
My life completely changed when Allicy arrived. I was someone calm, but also someone who couldn’t keep quiet. He had no patience for anything. Then Allicy came to show me that I could be better, that I should study more, understand more and, above all, listen more. She propelled me to a deeper level of understanding, to understand a look. Motherhood with Allicy made me realize that love, understanding and empathy don’t need to be expressed in words, just see the world in a different way.
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