Slow Life: Grief for a child that is still alive.
Slow Life: Grief for a child that is still alive.
Grieving for a life that you can't have and loving the one you do. The life of a parent of a special educational need (S.E.N) child is not like the ordinary.
Parenting a child with S.E.N is a journey filled with unique challenges, joys, and a complex array of emotions. Among these emotions, grief often takes centre stage as parents come to terms with the life they had envisioned for their child and family, and the reality they now face. When a child is diagnosed with S.E.N, parents often find themselves navigating a path they never expected to take. One of the most profound and often unspoken aspects of this journey is the grief that parents experience.
The Guardian spoke to 3 parents who want to remain anonymous about their life experiences. Does love trump the loss of what could have been?
The unexpected path
‘I felt like somebody had taken something off me before even having it.’
This grief is a natural response to the challenges and uncertainties that come with raising a child with special needs. Parenting a child with S.E.N often requires a tremendous amount of time, energy, and resources, which can lead to changes in career paths, social relationships, and personal aspirations. Parents may grieve the life they had imagined for themselves, feeling a sense of lost identity and purpose.
It is important to recognize that grieving the life you had envisioned does not diminish the love and dedication you have for your child. Many parents feel ashamed or guilty for having negative thoughts about their circumstances, but these feelings are a natural part of the grieving process.
‘I thought she would be better if she was with someone who understands her or knows what to do to help her. Plenty of times I have thought she would be better off with my mum, I’ve had some in-depth conversations with my mum, and she made me realise that she was in the best place. I felt ashamed and guilty that I had them thoughts I felt like a bad mum that they would come into my head anyway. I’ve always blamed myself for her having her disabilities, but I’ve slowly started to realise it’s not my fault.’
Grieving is not a linear process, and it may resurface at different stages of your child's life. Milestones such as birthdays, school transitions, and social events can trigger feelings of sadness and loss, as they serve as reminders of the challenges your child faces. Receiving a diagnosis can be a life-altering moment, and it is normal to feel a sense of loss for the future you had imagined. The diagnosis of a S.E.N represents a significant loss, the loss of the future that parents had envisioned for their child and their family. It is a loss that requires grieving, just as one would grieve any other significant loss in life.
The unique challenges of non-verbal children
For parents whose children are non-verbal due to their disability, the sense of loss can be particularly acute. The absence of verbal communication can create a unique set of challenges and can leave parents feeling isolated and disconnected from their child. ‘She is typically like having a newborn you must guess every cry to try and understand what she wants. Sometimes she will growl or huff to try and communicate to what she wants however some people like family and friends don’t quite have the same understanding of what she needs or wants.’
The experience of not being able to hear your child's first words, engage in conversations, or share in the typical back-and-forth of daily life is a profound loss that few outside the special needs community can fully understand.
‘It used to upset me a lot when his twin was talking & learning new things all the time, I’d feel as though I’d let him down somehow.’
Moreover, the challenges of communicating with a non-verbal child can lead to feelings of frustration, helplessness, and even guilt. Parents may question their ability to meet their child's needs and wonder if they are doing enough to support their development.
Your child's achievements, no matter how small, are worthy of recognition and celebration. Embracing the unique qualities and strengths of your child can help you find meaning and purpose in your journey. In fact, allowing yourself to grieve can be an essential step in embracing your new reality and finding joy in the unexpected. By acknowledging and processing your feelings of loss, you create space for acceptance and adaptation.
The importance of self-compassion
It is important to focus on the present moment and the love you have for your child, rather than dwelling on the "what ifs" or the life you had imagined. This is not to say that the challenges and grief disappear, but rather that they can coexist with the love and happiness you experience as a parent. It is possible to simultaneously grieve the life you had imagined and deeply love and cherish the life you have with your child. Parents often hold themselves to impossibly high standards, believing that they should be able to handle everything with unwavering strength and positivity.
Practicing self-compassion also means recognizing that parenting a child with S.E.N is a learning process, and that mistakes and missteps are a natural part of the journey. It means celebrating the small victories and finding joy in the unique bond they share with their child, rather than focusing solely on the challenges.
To all the parents of children with special needs: your feelings are valid, your love is profound, and your journey is one of incredible beauty and resilience. Having a safe space to share experiences, express emotions, and receive validation can be incredibly healing.
‘Reach out to other parents of children with additional needs, they are much more helpful and understanding and will understand when you vent about having a rough day and will not judge you.’