By Madiha Haroon, MS
Madiha Haroon, MS is a Licensed Marriage and Family Therapist and a Certified Drug and Alcohol Counselor in IL. She has been working with adolescents, individuals, couples, and families for over 15 years.
Certain events changes your lives forever. For parents with a special needs child, getting the diagnosis is such an event. This turning point can cause parents stress, anxiety, and depression. Parents may be scared about the uncertainty of what the future holds; and concerned about how they would take care of their beloved child. They may grieve for the loss of their hopes and dreams, and experience feelings of despair. Many times parents are overwhelmed with the challenges that lay ahead of them, grappling with the realization that their lives will never be the same.
According to American Disability Act (ADA), a disability impairs a person and limits them such that they are unable to participate in one or more aspects of daily living. Disabilities can be classified as physical, cognitive, learning, and mental or a combination thereof. The stage of life when a disability is diagnosed varies: Down Syndrome is evident at birth while it can take a few years before a child shows signs of Autism. Many times when we think of disabilities in children we think of special needs children who have additional needs.
As any parent would say, raising a child is difficult; however, raising a child with a disability comes with additional challenges and demands. Many of these challenges are long-term, and frequently get progressively stressful. This article will discuss common problems faced by parents of children with disabilities, strengths of these families, and offer strategies that parents can take to cope with these problems.
Age of Diagnosis
Both the ages of the parents and the child at the time of the diagnosis have a tremendous impact on the family. Typically the younger the parents the more challenging it is for them. They may not be as financially or emotionally secure to handle the demands of a special needs child. Therefore, they may need more support and resources. At the same time, if the parents are older at the time of the diagnosis, they also go through an adjustment. Older parents could have an established lifestyle, they may have other children, or they may be taking care of their own parents; hence, older parents may struggle to balance their roles and responsibilities.
Age of the child at the time of the diagnosis affects families as well. Early diagnosis helps parents adapt; it is easier to change expectations and make necessary accommodations. There are less experiences of what the life was like before the diagnosis, making the transition easier. With early diagnosis, parents learn the skills needed to help address their child’s needs, and bring about the necessary changes in the family structure. These early coping skills persists as the child grows older, which helps families transition into later stages of life such as adolescence and adulthood (Abbeduto et al., 2004). On the other hand, later diagnosis, such as when the child is an adolescent, may be difficult for the parents to make sense of it. They may grieve for the life they had and the future they had envisioned. This is especially true if the diagnosis is of mental illness. They might feel shame and stigmatized by family and friends. They may blame themselves and wonder if they could have done something differently.
Severity of Symptoms
Disabilities have different levels of impact based upon the level of incapacitation, degree of visibility, extent of care, and behavioral problems. Indeed the diagnosis itself does not affect the family as much as the psychosocial characteristics of the disability (Rolland, 1994). For instance, if the condition is progressive such as Muscular Dystrophy, the child becomes increasingly less functional, needing more care from family members. The family has to continuously adjust to the demands of the disability and grieve over the additional loss, making the adjustment even more challenging.
Disabilities also vary in their severity of impairment. The extent to which a person is able to take care of their daily functioning directly impacts the family. Lower the functioning capabilities the more burden on the family. For instance, if a child is unable to feed himself/herself or take care of personal hygiene the responsibility falls on the family members and the primary caregivers. The added strain places an extra burden of care and augments the pressure of taking care of a special needs child.
Generally stress is directly related to behavioral issues caused by the disability. In other words, the more behavioral issues the disability causes the more stress for the family (Warfield, 2001). Some diagnosis have more behavioral issues such as Autism. When parents believe they cannot manage their child’s behavior, they feel helpless and pessimistic about their capabilities as parents. With behavioral problems there is less predictability and more chaos, which causes parents more stress and depression. Behavioral problems with a special needs child are a strong predictor of maternal depression, stress, pessimisms, and feelings of lack of connection with the child (Abbeduto et al., 2004). Behavioral problems also reduce social support. Other parents/family members/friends may not be comfortable being around the special needs child when he/she is experiencing a meltdown. Children with disabilities require more appointments with specialists, especially when the child has behavioral issues. Parents not only have to schedule the appointments, but it also takes more time and energy getting the child’s cooperation in getting them ready for the appointments (Warfield, 2001), exacerbating the stress on the family.
Impact on family (psychological, social, financial)
Research has shown that having a child with a disability is taxing on parents. Child’s disability impacts parents both physically and psychologically. Parents report more stress, anxiety, and depression. They also report more physical ailments such as back problems, migraines, asthma, stomachaches, arthritis, and ulcers (Brehaut et al., 2004).
Mothers face more of the challenges of raising a child with special needs. Generally, mothers seem to take on more of the day-to-day care and report more depression and anxiety than fathers (Thabet et al., 2013). Mothers have difficulty finding appropriate childcare options especially when the child with special needs also has behavioral problems. These children require specialized childcare, which is not always easy to find and retain, and is costly as well (Warfield, 2001). Often, mothers find it difficult to maintain the rigors of employment; some reduce their work hours or stop working to meet the demands of the child.
Sometimes family, friends, neighbors, and community members react negatively to the child and the family. They may make negative comments, give them disparaging looks, and may not include them in activities. These behaviors further lead to feelings of isolation and marginalization. Many programs and facilities may not be able to provide special accommodations for the person with the disability. Hence, the family may not be able to attend and participate in programs within the community. Many family members report feeling stigmatized and alone (Dobson, Middleton, & Beardsworth, 2001), which adds to the strain of taking care of a child with a disability.
For many of the families, taking care of the special needs child becomes their primary activity. They may not be as socially active; they may have to reduce their work hours (Seltzer et al., 2001). In addition, many of their activities may be limited due to child’s functional ability. As these families adjust to the child’s needs they may alter their lifestyles, reducing number of times they go out, and varying the places they go to. They may limit their outings to places where their child is comfortable and accepted. Parents may also reduce their social contacts to close family and friends.
Moreover, having a child with a disability places a major financial burden on the family. These families spend 3 times the money than a family without a special needs child. Some children need special equipment, which their families have to buy or rent. It is also reported that a child with disabilities uses 3 times more medicines and visit the ER twice more frequently than children without disabilities (Newacheck, Inkelas, & Kim, 2006). Children with disabilities have more appointments with physicians, physical therapists, occupational therapists, speech therapists, counselors, and teachers (Warfield, 2001). Thus, this is not only a financial burden but a major time commitment as well. Parents have to arrange their schedule so that they can take advantage of all these vital services. Besides physical exhaustion it could also means less resources, time and energy for the other children.
Even though having a child with a disability puts a family at risk for developing psychological and behavioral symptoms, many families do not show signs of such symptoms. Instead, many accommodate by making changes and coping successfully with the stress. They show resiliency. They modify their work schedule, adjust home routines, and redistribute childcare responsibilities (Seltzer et al., 2001). Parents ask close family and friends to help with childcare. Amazingly, family members work towards a common goal of giving their best to the child with special needs, thereby bringing them closer.
Another way parents build their resiliency is by having a positive attitude, and adopting positive coping strategies (Hastings & Brown, 2002). They use religion as a coping strategy as they consider the disability as a blessing (Thabet et al., 2013). The disability makes them stronger spiritually, strengthens bonds with other people, and builds self-efficacy. Interestingly mothers and fathers use different coping strategies. Mothers tend to use more emotion-focused coping skills, such as seeking people to talk to, while fathers prefer to draw on problem-centered coping strategies, such as finding solutions (Thabet, et al., 2013).
These families are not necessarily isolated. They belong to social/religious organizations and have a strong circle of family and friends (Seltzer et al., 2001). They may lose some friends but the family and friends they do have are close and supportive. Also, although these families may not be able to go out as much, they make the effort to go out, especially to places where they feel supported and well received. In essence, their support network maybe small in numbers but nevertheless it is strong and meaningful.
Self-efficacy is a protective factor, and the more empowered parent’s feel, less is the impact of their child’s disability on them. Parents feel stronger, more connected as a family, and having a deeper faith. They benefit from close friendships, a strong support system, and a positive attitude; all of these predicts feelings of competency and self-efficacy (Hastings & Brown, 2002). Parents feel they have a sense of mastery and confidence, which shows in many areas of their lives including the workplace. Many times, parents utilize the skills they have acquired raising a special needs child in their work setting, helping them be successful at work; thus, leading to feelings of accomplishment and empowerment (Warfield, 2001). They feel confident they can handle and overcome challenges. They feel competent, empowered, and accomplished (Hastings & Brown, 2002).
No doubt having a child with disabilities is a stressor; it changes a family’s life forever. But many families adjust successfully to the challenges and make the necessary accommodations to raise a happy successful child. Here are some suggestions to help facilitate the process.
Suggestions for Families:
- Become an expert. Know everything there is to know about your child’s disability. Do your research, ask questions, keep up-to-date with the newest information, and learn everything you can. Find out how the disability affects your child. Be the expert on your child and their needs.
- Advocate for your child. No one knows your child better than you do, speak up on their behalf. Get them the services they need, whether those are in school or government programs. Stay calm but determined throughout the process. Be your child’s voice and get them everything they need in order to succeed.
- Support your child. Find out things your child enjoys and has a passion for. Support and encourage that interest. Take time to develop those interests. Become their biggest cheerleader.
- Offer praise and encouragement. Praise goes a long way. Children with disabilities need to be recognized and appreciated. Make sure you show them that recognition. Catch them doing things well and praise them, encourage their efforts and hard work.
- Establish structure and routine. Many children with disabilities respond well to structure and routines. Structure and routines gives them predictability, which is soothing and comforting. They know what to expect and what is expected of them.
- Be patient/calm. This may be a difficult time but try to remember your child is growing and there will be growing pains much more than other families. When times get tough, take a break, ask for help, and nurture yourself.
- Establish a relationship with providers. Your child may be seeing many specialists and not all of them may work in the same office, hence they may not be communicating with each other. Get to know each of them and help coordinate services, ensuring that all of your child’s needs are being addressed.
- Support System. Talk to other parents with similar diagnosis, do not isolate yourself. You can get advice, support, and resources. Seek support from friends and family. Build those connections, remember it takes a village to raise a child; you do not have to do it alone.
- Never give up. Your child needs you; you need to be his/her support system, advocate, and a friend. Your child needs your unconditional love and support, especially when times get tough. Remember all they have accomplished.
- Know the laws. Learn your state laws and regulations about disabilities. Learn about the programs and resources that are available for your child. Get to know your local area social service agencies that specializes in your child’s disability; they can be an amazing resource to you. By knowing the laws, you will be a better advocate for your child.
- Self-care. As you take care of your child, do not forget you have to take care of yourself as well. You can only care for your child if you are well. Take time out to nurture yourself, eat nutritiously, exercise, develop your spirituality, and spend time with family and friends. Find ways to restore your energy so you can be the best parent possible.
- Have fun. Most importantly enjoy your time with your child. They are a blessing and want your love and attention. Spend time with them, laugh with them, and do fun activities together.