Written by Dr Meghna Singhal and published on 09 June 2021.
While all parents feel guilty at some point in their journey, the churning felt by those with special needs children is more pronounced. Find out how to handle such emotions in a healthy manner...
Parenting is an intensely emotional journey. But parenting a special needs child is a different experience altogether. It takes you and your family through tumultuous emotions. While there are joys at small steps and minor successes, there is ample frustration, dejection, anger, and of course, guilt. How can you as a parent of a special needs child learn to cope with these negative emotions? How can you balance hope and fear? Read on to find out.
Special needs refer to children born with developmental disabilities, such as autism or with profound cognitive impairment such as mental retardation or, with a terminal illness such as cancer. It can also refer to children with serious psychiatric problems, such as childhood ADHD (attention deficit hyperactivity disorder). Special needs is an umbrella term used to describe children who face challenges more severe than their typically developing peers and hence, require support and guidance throughout their lives.
Typically, special needs families face huge emotional and financial challenges. Parents of children with special needs experience a roller-coaster of emotions including isolation, frustration, guilt, and grief. The Kubler-Ross model initially developed to explain the stages of grief, can also be applied to understand the stages of emotional pain that parents of a special needs child go through denial, anger, bargaining, depression, and acceptance. Once acceptance comes in, life might seem like a sea of endless appointments, hospitals, and professionals. Without a doubt, it is overwhelming. If parenting a typically developing child is hard, parenting a child with special needs is extra hard.
Neha is a 34-year-old mother of two. Her firstborn is a typically developing six-year-old girl. Her younger child, now three years of age, was born via emergency cesarean prematurely and with low birth weight. Since his birth, Neha's life has been a whirlwind of hospital visits, specialist appointments...lots of pain and tears. Her son was in a neonatal intensive care unit (NICU) for four months. He was developmentally delayed on all major milestones. Then, he was diagnosed with Central Nervous System Dysfunction and high-functioning autism. The mother reports feeling extremely isolated, frustrated, and tired. She says that one of the hardest parts of raising her special needs child is her constant feeling of guilt.
Neha's feelings are not very different from what other parents of children with special needs experience. Let us examine some reasons why parents of special needs children experience guilt:
It seems that guilt is a natural accompaniment to being a parent to a special needs child. Yes, even when you have all the scientific information at your disposal, even when the doctors have reassured you, and even if you are a part of parent support groups, it's only natural for you to experience guilt. You wonder if you could have done or still do, something different.
Is there a way to live without this guilt as a parent of a special needs child? Yes, there is. While guilt is a natural part of healing and acceptance, working through it is important to find the energy and motivation to help you and your special needs child.
Here are some of the ways you can work through your own guilt:
1.Guilt about feeling responsible for your child's diagnosis:
As you're reading this, close your eyes for a moment and answer this question honestly: 'Did I ever do something to intentionally harm my child when I was pregnant?'If your answer is 'No', as it is most likely to be, you have not caused your child's condition.
When Neha entered therapy, her therapist first asked her this question. On answering genuinely to herself, she felt immediate relief. Her therapist helped her gain acceptance of her son's diagnosis. Neha realized that not being able to find the reason for her son's condition, she was blaming herself. 'If I find out the cause, then maybe I can fix it, she used to think. Being in therapy made her realize that we can't always know the reason for our child's condition and that it's okay if we don't know.
2.Guilt about perceived failure:
One way to purge our preconceived notions is to educate ourselves. Read journals. Study websites. Read books and parenting blogs. Speak to professionals. Learn. This will go a long way in helping you understand your child's condition and managing your expectations accordingly.
Neha joined online communities (such as the autism circle on ParentCircle), parent support groups (such as Loving MiracleSpecial parenting Supporting Each Other'), and read books such as What I wish I'd known about raising a child with autism by Sheahan and Following Ezra by Fields-Meyer. Apart from imparting knowledge, all this gave her the strength to manage her expectations about her son and reduce her guilt considerably.
3.Guilt about not doing enough:
Parents who feel guilty about not doing enough are usually the ones doing everything possible for their special needs child. So if you feel you're not doing enough, take an honest look at your day, filled as it is with appointments, classes, or sessions. This will be an objective way of seeing that you're indeed doing enough.
Neha's therapist helped her write down everything she was doing to help her son. Then she calculated the total number of waking hours she spent caring for, feeding, bathing, giving medicines to, and taking her child to doctor's appointments or specialist sessions. This helped her see that she was doing more than anyone in her position possibly could.
4.Guilt about doing too much:
Doing anything for your special needs child might seem overwhelming and it is natural to want to strike a balance between too little and too much. What usually works is involving your child's professionals in figuring out a timetable that works for the unique requirements of your family.
Neha suggested to her child's OT specialist that bringing her son twice a week was proving to be extremely draining on her resources and leaving her exhausted. Together, they figured out a schedule in which she could bring her son twice a week every alternative week for OT and once a week for the remaining time. She utilized that extra time for her own therapy sessions.
5.Guilt about feeling sad:
Parents who beat themselves up over feeling sad should know that feeling low is a natural consequence of having a special needs child. And that it's not possible to feel grateful for your child all the time.
Neha's therapist helped her realize that it was not humanly possible to feel grateful or happy all the time. What helped Neha was maintaining a gratitude journal in which she could document all the extraordinary moments and minute successes her son and she had. When feeling low she could return to this journal and read it to reinforce and make herself feel better.
6.Guilt about neglecting the other child:
When it gets difficult to give your other child as much attention, create meta moments of connection. This means spending quality time together doing simple things that don't necessarily take up too much time. It's the little things you do together that matter.
When Neha felt her daughter was feeling left out, she started involving her in chores that she was doing. While cleaning and doing laundry together, she created the opportunity to talk to her daughter about her day, what she did at school, her friends, and her interests. She also made it a point to read a story at bedtime. Her daughter felt more connected to her mother without Neha having to spend a lot of extra time on her.
7.Guilt about parenting decisions:
Ask yourself this: 'Given what I knew at the time, did I do the best I could for my child?' More often than not, your answer would be 'Yes'. And if so, you need to be thankful for most of the decisions you have made for your child.
Neha thought back over the decisions she took for her son. Did it help bring about an improvement in his condition? Did it improve his quality of life? Did it help promote a higher level of independence? When she realized that the answer was 'Yes' to all these questions, she was able to let go of the guilt over some decisions that she continued to regret having taken.
8.Guilt about treating your partner unfairly:
Realizing that you've either been neglecting your partner (and marriage) or venting your frustrations on them is the first step. The second step is communication, facilitated either by spending one-on-one time together talking things out or in therapy.
When Neha realized she was unable to handle the high-stress situations she and her spouse had to deal with, she sought marital therapy for them (from another therapist, different from her individual therapist). She and her husband learned to communicate with and treat each other respectfully in therapy and handle the stress together as a unit.
9.Guilt about self-care:
Self-care is important for all parents, but more so for parents of children with special needs. Self-care gives you more energy and enthusiasm to care for your child. So in effect, you make a better parent by taking some time off for yourself. In short, you cannot fill from an empty cup.
When Neha starts making a conscious decision to schedule breaks in her list (see step #3), she realizes that she is much more patient and has a higher tolerance for handling stress and frustration. It makes her, she feels, a better person and a better mother.
10.Guilt about being an absent friend:
Keeping up with friends isn't easy for parents of children with special needs. Figure out what works with you such as catching up with a friend nearby while your child is in a session or talking using hands-free while completing chores.
When Neha explains her situation to her friends, she is touched by their support. She now regularly schedules meeting with a few close friends every month and talks to them about things other than special needs. Her sense of self, her identity, is shaped by things other than being a parent to a child with special needs.
Yes, parenting a child with special needs is hard, the journey wracked with guilt and self-doubt. But it needn't be. It's crucial to realize that you're not meant to be perfect, that you can seek support, that you're not alone, and that with more experience, more time, more practice, it does and will, get better.