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Monday, July 15, 2024

What mothers of children with special needs experience

Mothers of children with mental health needs suffer from stress, anxiety and depression. When a child is initially diagnosed, mothers tend to experience a roller coaster of emotions, from grief, self-blame, stress, anger, worry, to eventual acceptance.

Mother’s day just went by and most of us wished our mothers and showed them how much we love them. Motherhood is not easy, ask any mother! Its years of worrying, caring, making choices that could shape their child’s life, and so on.

Mothers of children with mental health needs are more at risk of issues like stress, anxiety and depression. A research conducted in 2018 found that mothers of children with a disability (physical or mental health-related) were at a greater risk of developing mental health issues like clinical depression, anxiety, and psychological distress.

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Autism (and autism spectrum) is a fairly well-known disorder. Many mothers of autistic children report a bitter-sweet, rewarding yet stressful experience. Sweet and rewarding because, the children often display a lot of love towards their primary caregiver (mother) or that often they display specific intelligence (math or music, etc.) or above-average memory. These experiences provide relief and proud moments in an otherwise stressful life. The National Autistic Society (USA) describes the following behaviours exhibited by children on the autism spectrum:

  • Difficulty relating to others and understanding unwritten rules.
  • Difficulty in communicating (some may communicate in a non-verbal way).
  • Difficulty with thinking flexibly eg. how to cope when plans change.

Parenting children with special needs

Parents of children on the autism spectrum – especially the primary caregiver, who in most cases is the mother, need to manage meltdowns. They need to interact and work with teachers about their child’s special need, drive to therapists and doctors and avoid sights or sounds that can cause sensory overload. Moreover, they have to do their best to maintain a routine and even manage or help their child sleep (some autistic children display sleep disturbances as well).

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Another relatively common disorder is Attention Deficit Hyperactivity Disorder (ADHD). In a research conducted in 2008, mothers of children with ADHD expressed distress and fatigue. They reported feeling ‘on the edge’ all the time and an absence of ‘normal’. They described motherhood as exhausting. In another study, mothers described their role as demanding, stressful and they often felt marginalized. They often also report guilt and self-blame, worrying that they were the cause of their child’s diagnosis. Others reported having to constantly advocate for their child.

In yet another research, mothers of children with developmental disabilities reported both, feelings of joy and pride as well as exhaustion, stress and depression. According to them, they found motherhood rewarding, self-growing and a learning experience. On the other end, they also mentioned feeling drained, stressed, constantly worried and also reported neglecting self and decreased wellbeing.

Mother: The primary caregiver

Parenthood itself is challenging, however parenting a child with mental health needs can be especially challenging. Mothers often assume the role of the primary caregiver, which thus increases the burden they may feel.

When a child is initially diagnosed, mothers tend to experience a roller coaster of emotions, from grief, self-blame, stress, anger, worry, to eventual acceptance. Acceptance is often the first step to learning coping strategies. Over time, mothers tend to become focused on coping, be it by getting help, solving problems, and finding meaning in their experiences or by avoiding their problems.

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We often observe that it is the mother who becomes an advocate for her child. She fights to give her child a healthy life. They often deal with the stigma and work hard to improve the life their child lives. Hence, mothers need to care for themselves as well. Here it is important to look into effective coping strategies.

Coping with stress 

The first coping strategy is through social support. If the family is supportive, especially if the father is compassionate, it can positively impact the mother’s’ health. In our culture, positive and constructive help from aunts, uncles, grandparents and other relatives also be of great help. It reduces the feelings of loneliness and isolation, as though she is not the lone supporter for her child, she has people she can trust to help her!

If the family is non-supportive or absent, it is a good idea to build social support. This can be in the form of close friendships and even through support groups with other mothers of children with mental health issues. Support groups can prove to be a very significant source of support. Mothers of children with mental health issues are often psychologically and emotionally isolated. They are dealing with long-lasting emotionally difficult circumstances that normally involve numerous stressors. Support groups can reduce this isolation, it gives them a chance to emotionally connect with others riding the same boat.

Secondly, our culture tends to hold mothers up to a pedestal. This can be very distressing and can lead to emotional fatigue. A mother should learn to give herself a break, remember, she is not to blame. In fact, whilst caring for a child, we all make mistakes, the key is not to let those mistakes pull one down and spiral into guilt. Perfection is never possible.

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Mothers tend to ignore themselves, put their own needs at the back in favour of their child. However, caring for themselves helps in the child’s recovery, it helps the mother be at her best when the child needs it and helps prevent responding in an emotional or fatigued state. Some tips apart from a support group are:

  • Take a break. Have some me-time – a walk, a long bath, watch a movie or go to the theatre, read a book, some time alone is important and can improve overall wellbeing.
  • Nurturing ones’ child is important but try not to overprotect them. Set limits and communicate as effectively as possible with the child. Know where to draw the line.
  • Do not ignore relationships. Motherhood is important and maybe consuming but ignoring ones’ marriage or other relationships is not a good idea. A good relationship can provide support, strength and joy. 
  • Engage in physical activity, yoga or mindfulness practices to relieve anxiety.
  • Learn more about the mental health issue faced by the child. Ask questions from the doctors and therapists and be involved.

Lastly, and most importantly, mothers should also not shy away from seeking professional help themselves. If they are feeling increased levels of stress, anxiety, depression or any overwhelming emotions, it is advisable to seek support. Seeking help from a counsellor, for instance, can help them vent. It can be a cathartic experience and counsellor can help them build effective coping strategies. Remember, if the mother is unhealthy, if her glass is empty, she won’t be able to be there for her child.

Falak Zehra Mohsin is Founder & Counselor at Holistic Minds (Facebook page:@H0listicMinds). She is a Visiting Faculty at IBA (Karachi). Twitter: @Falak_Z_M. The views expressed in this article are the author’s own and do not necessarily reflect the editorial policy of Global Village Space.