Every expectation is full of hope and even more so if it is for a baby. When a child with a neurodevelopmental disorder arrives, it impacts the entire family, whether it is multi-parent or single-parent, functional or dysfunctional, of whatever type, inevitably there is a bit of a mourning process. If we analyze the day to day life of this nucleus that is the family, the idea of what is expected of it is confirmed: to form for society a citizen that contributes to the well-being, development and personal improvement and that of all, for the common good. To achieve this undoubtedly requires a support network that helps to fulfill the purpose of forming a competent subject capable of achieving any type of personal and collective improvement by actively collaborating.
The transcendence of lifestyle
The demands of everyday life force us to adopt lifestyles that can be destructive on a small or large scale, in the short, medium or long term, in aspects such as food, the environment and the relationship we have with everyone around us. Fast food is delicious, its presentation is eye-catching, and it is easy to acquire and consume, which makes it a predilection for the vast majority. Many working mothers feel less guilty allowing and encouraging this type of food for their little ones, making it increasingly difficult to give it up because of the addiction it generates, and if any of their little ones live with sensitive peculiarities associated with taste and do not accept anything other than chicken nuggets or milk (which seems harmless), parents or caregivers will feed them only that.
The lifestyle we unconsciously build generally goes against nature, first of the child itself, following with the environment around us. That is to say, not only do we not have time to motivate and teach them how to plant a plant and teach them to take care that they do not eat the soil or make too much of a mess into an opportunity to learn about the stage of development they are going through. Instead, we prefer to use manufactured essences as palliatives to induce sleep, keep the area free of unpleasant odors or buy knick-knacks to entertain them.
The need for adaptation and a support network
Humans possess a brain kit with a whole set of complex actions that is in place before we are born. The family environment provides each child with countless social cues that allow him or her to adapt, learn, relate and continue learning. People with a neurodevelopmental disorder, specifically autism, have a kit that works differently, so the environment has to draw on some resources to achieve what is naturally expected.
The exacting demands of today’s society
The struggle to fit into a highly demanding and changing society with fluid standards is never-ending and becomes exhausting, leaving a sense of frustration. This volatility ruins the efforts of people living with a neurodevelopmental disorder, bringing their families to the brink of collapse.
The importance of the support network
Hence the need to generate a support network that offers basic and reliable information on the importance of an adequate diet rich in nutrients that provides substantial benefits, of the benefits of interacting with nature using our hands for its care, preservation and transformation and, above all, to provide spaces and strategies that promote a mutually supportive relationship, that is, to discover what the person living with a disorder teaches us and contributes, such as those moments of peace when being with oneself and that, given the current circumstances, the normotypical society needs at some point.
Whoever lives with a disorder gives us that natural support network without asking for it, it is just there, at our disposal, because no one has said that our lifestyle is the right one, because, if it were, the rates of stress-related illnesses, suicides, alcoholism, drug addiction, etc., would be on the decline.
Society expects us to be competent in everything. An idea that forms a vicious circle in families, for example, the daily stress of a person who takes care of each member of his family taking care of the physical, emotional and social welfare, and stops focusing on who is who, what each being naturally feels and thinks, giving way to what he should be, say, think and do, trying to follow until reaching the model of an effective citizen. This is one hundred percent stressful, and it is worth remembering that every child lives through the emotions of the parents.
Adaptation to the environment is important. For someone living with a neurodevelopmental disorder, it may not be so important. The family longs to be included and to achieve this, being part of a support network will help them manage the complications that each goal entails.
Difficulties associated with the labor market
It seems that categorization is indispensable for the functioning of any group, so people are classified into capable and incapable. Some are the ones who determine the way the world should move and the others are in charge of making it move. That is why it is increasingly difficult to successfully include people with any condition in the labor field, since opportunities are linked to abilities, skills and efforts. This is where our dreams as parents become impossible and the support network must contain parental demoralization.
Resources to achieve the expected goals
Social stories, anticipators with pictograms, agendas and timelines are resources that make thinking more flexible (executive functions) and get them to accept trying other foods, even eating ice pops that numb the oral cavity a little to make them taste new and, above all, nutritious foods. It is difficult to “make up” homemade food to make it look like what we buy at the supermarket or other establishments and make them accept it due to the hyper-reactive response, however, it is worth trying.
Let’s make an alliance with nature, let’s validate the naturalness of nature by using natural products to induce sleep, lavender, rosemary or cinnamon are excellent flavoring and water, an invaluable resource to play with and at the same time, the best opportunity to share knowledge.
What is a support network?
It is a group of people who share the same goal, with a flexible, consistent, sustainable and available organization, capable of sustaining the emotionality of each member. It is a living community that knows the characteristics of the condition that unites it and shares experiences with the intention of guiding and collaborating to improve the quality of life of its members. Because that should be the supreme goal for everyone.
Parents whose child lives with a disorder often feel alone, misunderstood, judged, singled out and excluded by the dominant (neurotypical) society. The recommendation is to seek this support network, and if it does not exist, to form one that provides strength, warmth, respect and inclusion.
Well-being of the members
Well-being is absolutely subjective. For the person living with a neurodevelopmental disorder such as autism, it may mean the satisfaction that comes from lining up toys, keeping their favorite objects in order, watching a movie a number of times, smelling people’s hair, and so on. Well-being could also be related to eating chocolates and foods that are special to them or spending time in their room reading comics.
For caregivers, well-being is often related to living a life as close to “normal” as possible because of the uncertainty of wanting their child to be well even when they are gone. Thus, they are the ones who have to start weaving the threads to form this support network followed by siblings, cousins or neighbors. Every support network is responsible for updating information about the condition, fighting for their rights, accompanying them in their obligations and working to obtain employment opportunities.
The support network as a source of personal development and improvement
Integral development for any human being encompasses emotional, physical, family, social, intellectual and financial aspects. For those living with a neurodevelopmental disorder, it is evident that they depend, to a great extent, on the support network they have to achieve this development and, to another extent, on their own abilities.
The family must ensure the autonomy of its members in the aforementioned aspects in order for them to achieve the development to which we are all entitled. This is how any support network begins.
Perhaps at this point you are asking yourself… and the people who require very noticeable help, will they be able to reach the development we are talking about? The answer is yes. It requires gigantic, collaborative work, starting from within each cell and extending to the whole. In this way it is possible to visualize a personal improvement that generates an impact on the context to which it belongs, starting with the support network itself. We are not all called to be engineers, architects or lawyers, but we are all called to be successful within the possibilities of each individual.
All conditions at their very core are exactly the same. They simply appear in their different manifestations according to precise peculiarities in your personal field. The frequency of affection, commitment and accompaniment offered by any support network achieves important advances.
Observe your child, decipher them, find their talent, in this way you connect with their being and benefit everyone. We all learn from each other. Empower new projects, accelerate the control of their own personal instructions through mindfulness.
Align yourself more deeply with the principles of nature in the face of dispute, antagonism and the difficulty of commonality. Where things are not working, bring about the changes that are necessary. Find the strength, endurance and patience to form a support network when it is an option.
Bauman, Zygmunt. (2004). Liquid Modernity. https://giuseppecapograssi.files.wordpress.com/2014/01/bauman-liquid-modernity.pdf