Parenting is tough work. Parenting a child with special needs deserves a gold medal, and it is safe to say that during the last month I have met some impressive gold medalists at High Hopes Dubai.
Research in the United states indicates that it is now estimated that There are 11.2 million children with special health care needs in the United States or one in five households caring for a special needs child1. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. This study examined physical health (physical functioning), mental health (emotional, social, and cognitive functioning; communication; and worry), family functioning (daily activities, family relationships), and care burden (caregiver employment, caregiving time, travel time, health-related out-of-pocket expenditures) of parent caregivers for medically complex, medical technology-dependent children.
The study found that there was a considerable physical, social and financial burden that has a direct effect on the mental health and well-being of parents and care givers of children with special needs. A staggering 80% of parents reported feeling anxious, depressed or hopeless. However, it is a fact that is often ignored or not considered in the planning of interventions for children with complex special needs. As is the case with parenting, the parent and his/her needs are pushed down to the bottom of the priority list to focus solely on the child and their needs.
However, there is a growing body of research that concludes that taking care of a parent’s mental health and well-being has direct benefits on the progress and development of the child2,3. Parents who report feeling anxious, depressed or overwhelmed on a regular basis also report slower progress with their children when all other factors are controlled for2. It makes a lot of sense, if a parent is happier, more relaxed and focused then that energy will naturally flow to their child who needs as much positive energy as they can get4. However how can a parent feel this way when parenting a child with special needs bring so many physical, mental, social and financial burdens with it. Here are some tips on how:
- Seek Help – do it for your child. There is still great stigma related to seeking a mental health therapist. But I always tell my families, it is just a conversation with an adult. If you a have flu or stomach bug you wouldn’t hesitate to see a physician so don’t hesitate the well-being of your mental health as its as crucial. At high hopes we often offer free consultation for families during special months so stay tuned.
- Find your tribe – finding your tribe is essential. One of the biggest stressors for parents of kids with special needs is feelings of isolation. It’s important to remember that you’re not alone. Finding support – whether virtual or in-person – can be invaluable as you connect with others who are facing similar situations. Families with similar difficulties who will understand and sympathize with what you’re going to. High hopes is so unique in that aspect in that it promotes and supports parents to connect in a meaningful way offering mums workshops on a monthly basis.
- Get support – getting an extra set of hands might be difficult for some families. However getting physical support from friends and family can lessen the burden on the highly taxing effort of physical care as the average weekly hours of direct care is almost 33.0 hours a week if not more. This will allow you some distance and space to come back refreshed and energized.
- Carve out “Me time” – This might be the most difficult as me time disappears as pressures and obligations mount. That is why I state it as carving out. As it literally mimics that action of finding time that doesn’t exist to focus on your physical and mental health.
- Seek help – I write this point again as I know it will slip through and I predict that you will ignore my plea. So get support and don’t feel like there is “something wrong with you” there isn’t! Unlike the medical model, you don’t need to be ill to see a therapist you can go in for a chat or a friendly hello. Here are therapy types that may benefit you as a parent of a child with special needs:
Psychodynamic therapy: This is the therapeutic modality that most closely aligns with the popular perception of “talk therapy.” It can help you understand and gain insight into your behavior, as well as learn ways to resolve negative feelings in a healthy manner. If you are experiencing grief, excessive worry, and fear about your child’s future, psychodynamic therapy can be a tremendously helpful outlet to talk about these concerns in a safe space.
Cognitive behavioral therapy (CBT): CBT is a skills-based approach to talk therapy. In CBT, you’ll work with your therapist to 1) identify your particular problems or concerns, and 2) integrate strategic techniques in response. For example, if you’re constantly overwhelmed by stressful situations, you can learn relaxation techniques to clear your mind and deal with issues calmly as they arise.
Couples counseling: When you’re co-parenting a child with special needs, your romantic relationship may be the first thing that’s sacrificed as you prioritize your child’s needs. Couples counseling can give you an agreed-upon space to work through conflict or disagreements, as well as ensure a time to reconnect even amid your busy schedules.
- We are here to help – Finally speak to anyone at high hopes if you feel like you would like to speak to someone (me) if you feel overwhelmed, anxious or simply needs an empathetic ear. I would love to hear your story over a cup of coffee (or two)
- Ganz ML, Tendulkar SA, (2006). Mental health care services for children with special health care needs and their family members: prevalence and correlates of unmet needs. Pediatrics. Jun; 117(6) :2138-48.
- Mattson G, Z. Kuo D, (2019). Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families. Pediatrics. January 2019, Volume 143, ISSUE 1
- Zelman J , Ferro M, (2018). The Parental Stress Scale: Psychometric Properties in Families of Children With Chronic Health Conditions. Family relations. Volume 67, Issue2 April 2018 Pages 240-25.
- Bally J, Holtslander L, Peacock S, Spurr S , Hodgson‐Viden H , Mpofu C , Zimmer M, Smith N. Supporting parental caregivers of children living with life‐threatening or life‐limiting illnesses: A Delphi study. Journal for specialists in pediatric nursing. Volume23, Issue4 October 2018.