The Unheard Fear: Journey of a Parent

Having a neurodiverse child is as much about acceptance, as it is about unlearning things to find a novel concept of normalcy in the way we understand life. This process of acceptance is both challenging and long, marred by challenges that cannot be bound under the larger brackets of social or psychological. To accept this as a part of one’s life comes with a plethora of psychosocial inhibitions that need to be addressed and dealt with.

The first and one of the most important steps in doing that is acknowledging these challenges instead of ironing them out to make them seem simpler, or less dense than they actually are. If looked at cursorily, these can appear more social than psychological, but the very idea of discomfort with anything that tapers away from the normative idea of a life surrounded by neurotypicals.

There is an acute social pressure that the parents of neurodiverse children have to face. Unlike others their age, the fear of being pushed away by the social fabric around them and hence the extra effort put in ensuring that they are not excluded is mentally, and physically fatiguing. This apprehension is often built by remarks that make them feel “different” from the rest.

A remark like that – often by a friend or an acquaintance – that may not be made for any wrong reason, can make these young couples feel different from others. Further, an absence of understanding the needs of a neurodiverse child, and an inability to ask for their preferences, often leads to social gatherings that are inaccessible for the child, and in extension their parents, who are furthered in fearing alienation.

A lot of times they face social challenges coming from not just the societal structures, but also their own families. Often parents are met with unaccommodating responses by their family members when they have a neurodiverse child. These parents are often unwelcomed in social gatherings, making them feel isolated, and ousted simply for having a neurodiverse child.

They are always reminded by well-wishers that their life is tougher, and more challenging than others. This can also give rise to the vulnerability of a couple, who are already aware of the challenges ahead. Such social negligence, fear of abandonment, and a constant reminder of their lives being “different” from the rest can end up triggering the parents’ psychological response to their situation.

The key relationship between these sociological pressures of appearing to iron out problems in front of the world for the fear of being left alone, and its psychological impact is a relationship that needs to be understood in all its intrinsic detailing. One does not exist without the other, and as humans are deeply social beings, it is often the social that fuels the psychological.

One of the most common, obvious needs of a human being is to feel a part of a community. The need for acceptance, and being included runs deep into our idea of ourselves. We look at ourselves, often, how others look at us. This is especially true when we are going through a tough phase, and need help from our social surroundings to help us become a more welcoming, accommodating mirror to ourselves. This is especially true for parents of neurodiverse kids, as it can make them even more uncomfortable. It is then that they need a better reflection of themselves from the social fabric around them. But a comment that makes them aware of how they are unlike others, and a constant need to be vocal about the needs of their child, can impact their understanding of themselves.

This can be especially hard for a mother. In a patriarchal society a woman is often seen as the cause behind a child’s medical condition. Families, and friends can often be unkind to mothers. They are often ridiculed for how they could have done things to prevent a child with neurodiversity, and made to feel as someone inferior to other women who have neurotypical kids.

Something like this can make a mother feel isolated, as if fighting a cornered war against everyone around her. This can add on to how a child with neurodiversity impacts a mother psychologically, making them feel uncomfortable in their own skin, unsure of everything they do, and insecure of themselves as a mother.

Beyond how society responds to the parents of a neurodiverse child, another thing that these parents need to battle is the self-imaging of the idea of family they pictured for themselves. In the world we live in, no one pictures a family with a neurodiverse child. The image of an “ideal, happy family” is that of non-disabled parents with neurotypical kids. These parents feed off this image growing up, too, making the journey of accepting a life with a neurodiverse child both a socially, and psychologically taxing procedure.

As they look after their child, slowly handling the growth of their child at their own pace, around them in the society are examples of their peers nurturing neurotypical children. These kids mirror the kind of child these couples pictured having themselves. A constant reminder that their reality of a family life is different from the one they once imagined it to be like.

This can be a major psychological hindrance to overcome for parents. A lot of life, after all, is about us trying to match our lives to how we once pictured it. Any divergence from that image we hold dearly in our mind could be distressing, and having a neurodiverse child is a significant departure from that image of a family of neurotypicals, impacting the parents’ psychosocial vision of themselves, and their child, before they try to find their way back to accepting things as they are.

After overcoming these issues of complex psychosocial nature, parents also have to tend to the potential of a financial burden of having a neurodiverse child. Again, this issue, which could be seen as a psychological one, becomes lethal when blended with how society looks at neurodiversity and their needs. It is common knowledge that a lot of insurance policies turn cold in the face of a neurodiverse client. Firms that claim to make medical expenses easy for their clients tend to be apprehensive of meeting the medical needs of neurodiverse people.

This makes the problem of finances that parents make a tricky one. Having a neurodiverse child can come with the possibility of extra financial expenses, and in a society where neither the government or the insurance companies provide with adequate aide to their families, the burden squarely drops on parents, making the very idea of handling their finance a bigger headache for them than anyone else around them.

Something like this can lead to couples altering their life plans, giving up on the so-called luxuries of life to make space for the potential unpredictability of their child’s needs. What it also does is make it tougher for them to think about a second child. Along with the financial aspect that could make them ponder over having another child, the fear of a second child with disability is also a major concern.

Additionally, the world around them constantly reminds them of how their sole responsibility should be towards their neurodiverse child, making them question the prospect of another child even more deeply, taking them further away from the cliched image of a family of four that many envision to have.

These psychosocial issues emerge as firm challenges for parents with neurodiverse kids, but they can be overcome. To acknowledge their existence is the first and foremost step, and what follows is to slowly find comfort within oneself with having a neurodiverse child. Finding solace in science, instead of superstitions, and accepting neurodiversity as a part of the “normal” image of life is all part of ensuring that a parent is psychologically healthier, and not impacted too much by how the social fabric around them responds to them, their life, and their child.

The journey could be a long one, but there is nothing more satisfying, and comforting than to find peace and resolution within oneself. All it takes, before and above everything else, is to acknowledge that having a neurodiverse child opens a box of psychosocial issues that need to be confronted, and resolved instead of avoided and allowed to grow fiercer with time.

By Rachit Raj

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