Parenting a child with a special need, whether a physical disability, a learning delay, an emotional challenge, or a developmental disorder, may require the acquisition of specific skills, such as caregiving or advocacy, and demand a commitment of time and energy that can jeopardize careers, marriages, and connections with other children. While every child’s particular need may be different, the experts’ advice for parents is the same: Do not let your own physical and mental well-being decline.
Following is some expert advice on maintaining relationships and well-being in special-needs families. For more detailed information on parenting children with specific diagnoses, please follow the links below:
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- How can parents maintain self-care while caring for a special-needs child?
- How can parents maintain their own bond in a special-needs family?
- How can parents resist the urge to “fix” a child?
- How can parents help special-needs children navigate social challenges?
- What should parents understand about special education?
- How can parents tell that a child is depressed?
- How can a parent identify the signs that a child may be considering suicide?
- How can parents deal with the feeling that they cannot help their child?
- How do families adjust when children with special needs move beyond school age?
For anyone whose life revolves around caregiving, including the parents of special-needs children, there are inherent risks that can jeopardize both their own well-being and that of the people they care for. Insufficient management of one’s own stress as one cares for others can lead to emotional burnout and feelings of helplessness, hopelessness, and paralysis. Experts advise parents to find a practice that works for them, whether therapy, exercise, mindfulness, or another approach. It may bring on feelings of guilt, but caregiving parents need to redirect some of their energy to self-care and remind themselves that these efforts will directly benefit their child.
In every family, parents, consciously or not, build a “co-parenting alliance,” a division of labor to support children and uphold their own responsibilities to careers and each other. In a special-needs family, this alliance becomes even more critical. When parents do not share a consistent approach, a child who requires consistency may struggle, and so parents must openly discuss their inclinations with each other, and how they can adapt and work together to create a reliable home environment, while always emphasizing attention, nurturing, and affection. It also becomes more important for parents not to negate or contradict each other, especially in front of their child. Instead, parents may want to hold regular family meetings, between themselves and with their children, to discuss their plans and concerns and to display unity and cooperation. Above all, experts urge that couples not let their marriage or their romantic connection fade. Even if it’s just scheduling a periodic “date night,” couples must understand that maintaining their bond will help maintain their family.
It’s instinctual for a parent whose child has a special need to want to fix them, or fix everything around them so that they can thrive. And there are many things a parent can do for their child to help them learn, gain independence, and develop social skills. But they may not be able to “fix” their child’s underlying condition. Identifying the ways a child can achieve in the moment, and, especially, coming to understand some of the ways to reframe aspects of their condition in a positive light, whether it’s energy, imagination, focus, or curiosity, to create a more positive home environment for everyone.
Research shows that more than half of children diagnosed with ADHD are disliked by their peers; they are twice as likely to have no reciprocated friendships as other children. Hampered with less-developed social skills, as are many other children with special needs, they often struggle to bond with peers, sometimes leading to frustration and anger that only distances them further. Unfortunately, such children are often unaware of their social deficits, and so calm guidance and support from parents during interactions with other kids may help, as can preparing kids for social interactions so they have internal scripts to call on when things don’t go according to plan. Parents can also focus on individual friendships rather than a generally negative reputation among a larger peer group, and remember that a warm, supportive relationship with parents can be very comforting for kids struggling with peer relationships.
First, that special education refers not a place, or even a specific classroom, but a set of services within (and sometimes outside of) a school focused on delivering smaller classrooms, specially-trained staff, structure and consistency, greater confidence, and relatable peers. Special education services are not only for children with physical or developmental abilities. In most districts, special education programs are also available to kids with emotional or mental illness as well, such as boys or girls who struggle to control their emotions and so can be disruptive in a larger classroom. A child may spend all or part of the day in special-education rooms or programming and may or may have periods integrated with other students in their school. The most important step for a family is to find out the services available in their own community and advocate for their child receiving the help they need.
Children with special needs may be more likely than others to experience depression, but it is often difficult for parents to detect critical red flags. Studies find that parents are generally overconfident in their ability to identify depression in their children, and kids report that they are unlikely to share depressive feelings with parents. Children may believe parents don’t listen to them, that parents are too eager to jump in and try to “fix” everything, or that they will insist it’s a temporary phase. Many kids also don’t want to scare their parents. Mothers and fathers who want their children to feel they can open up about depression should demystify the condition by speaking of it openly, including their own experiences, and to identify other trusted adults children may be willing to speak to, including teachers and doctors.
Many children will contemplate suicide and their parents will never know. But there are a set of hidden risk factors (aside from clinical depression) that may make a child more prone to suicidal ideation and to which parents should pay special attention, although most children with one or more of them may never consider suicide. Anxiety is a significant risk factor, as individuals with anxiety are 10 times more likely than others to have suicidal thoughts. Sleep disturbances, and having been the victim of violence, are also risk factors. Keeping a child’s immediate home environment safe, helping a child learn to use internal coping strategies like exercising or drawing, and reaching out to individuals the child trusts can be important steps toward safety planning.
When a child is living with a disorder such as anorexia, a parent may naturally believe that the more effort they put into caring for the child, urging him or her, for example, to eat as they should or overcome their unhealthy beliefs about their bodies. Often, however, that’s not the case and, rather than feeling guilt that they have not given up everything to help, they may instead have to come to grips with the idea that they have done all they can, and make sure that their child is receiving the best professional care they can find. “Don’t give in to the tempting idea that to save their life you must sacrifice your own,” writes British consciousness researcher Sue Blackmore, whose daughter is a recovering anorexic. “It isn’t true. And they may need you in the future when they are better. If you are a wreck your child may feel an even greater burden of guilt at having been the cause of your misery. So do your best, love your child as well as you can, but keep on being yourself.”
Many parents embrace their empty nest when children graduate high school or college and begin to primarily live away from home. For other families, there’s a very different shift: From a mix of caregiving and reliable time away from it while a child is in school to an often more challenging period that may involve closer to full-time caregiving—or the guilt of not caregiving full-time while an adult child spends their days in a group home or similar setting. “The fantasy I keep coming back to — the one that lingers — is the wish that Danny could create his own nest one day,” writes novelist Hannah Brown, who is raising an autistic son requiring full-time care, “not because I can’t accept him for who he is but because believe that’s what he wants, too.