Ana Maloney explains how supporting special needs parents and their families can be highly rewarding. Equipping yourself with insights into the experience of special needs parents and examples of approaches to treatment can render your work more effective and allow this client group to feel truly understood.
- Ensure that you are familiar with the needs of special needs families and the specific health conditions of their child.
- It is important to help the parents feel understood and supported in their struggle.
- You need to be aware of the possible accumulation of psychosocial strains on the parents and other family members.
- It is important to call the child with special needs a ‘child with a disability’ rather than a ‘disabled child’, so they are seen first as a child and not their disability.
What to consider before working with special needs parents
Supporting parents and the families of special needs children (referred to here as ‘special needs parents’) can be highly rewarding.
If you are unsure as to whether your skillset and experience are a good match for this client group, it is advisable to share ideas with a colleague who has worked with special needs families. If you decide to work with special need parents, ensure that you read about the specific health condition of their child and familiarise yourself with the experiences of as many special needs families as possible.
Special needs parents live extraordinarily busy lives. Unforeseen circumstances often force them to abandon a predictable schedule and to forgo pleasant activities. They struggle to make time for therapy. If a parent, couple, or family does meet with you, you can assume that a true need for help drove them to make time to see you. A special needs parent struggling to carve out time and childcare is likely to think, ‘this had better be worth it!’ You, the therapist, need to appreciate what it took for them to show up, and really strive to make the most of your meetings, as they are probably few and far between. Making special needs parents feel understood and less alone in their struggle is always a good start.
Weekly meetings are often not possible. Appointments will be cancelled last minute for genuine reasons, and special needs parents may end up seeking your help on an as-needed basis across different stages of their child’s development. Remaining a stable, available presence over longer periods can prove therapeutic to parents.
The diagnosis and ongoing challenges of a serious disability sends waves throughout the family system, leaving no family member untouched (Rolland, 2018). You need to be aware of the possible accumulation of psychosocial strains. The successful treatment of the special needs child is just part of the whole picture. If psychosocial strains remain unaddressed, the successful treatment of the child’s illness may exist alongside a whole family system suffering irreparable harm.
A therapist who thinks in terms of how the disability impacts the entire family as well as each individual member is well suited for work with special needs families.
As reported by special needs mothers in Wright’s 2002 research, nothing was more distressing than receiving outdated information on their child’s condition. They found it disturbing when statistics were inaccurate or when members of the healthcare team prematurely predicted their child’s future cognitive and physical abilities. As a therapist, try to avoid forming assumptions about the child’s future abilities. As a special needs mother, I can assure you that even the most vulnerable child can thrive. The parents’ hope for improvement is a precious source of motivation and perseverance. Any printed materials for these clients are effective when they are up-to-date, from a reliable source, objective, encouraging, and present all aspects of their child’s diagnosis.
It is important to bear in mind that, under the stress of chronic illness, a family that may have been otherwise happy and managing well, can require occasional psychological support. Periodic family consultations at times of increased stress can be invaluable in a special needs situation. Sometimes just a couple of sessions are needed for the family to feel better and reach resolutions (Rolland, 2018). At the same time, all healthcare providers need to understand that chronic sorrow is often a normal consequence of having a child with a chronic illness or disability, and that this sorrow can become more pronounced when certain triggers are present.
It is important to call the child with special needs a ‘child with a disability’ rather than a ‘disabled child.’ This may seem subtle, but it is very relevant for sensitive ears. We always need to recognise the child first and the disability second. The child’s life is to be valued and celebrated, not viewed as a misfortune or tragedy. With time, special needs parents need to see a beautiful infant first and the disability second. This constitutes one important treatment goal.
Therapy around the point of diagnosis
You may be contacted by or referred to parents who have recently learned about their child’s special condition in the perinatal stages. A diagnosis of a chronic disorder often marks the beginning of a long-drawn-out journey that includes phases of grief and significant losses. Parents often mourn the loss of a physically healthy child and the hopes and dreams they held for that child.
Preventive meetings around this time can be particularly helpful. A therapist may need to work with the whole family at this stage in order to help each member anticipate the impact the new arrival’s illness might have on them. A therapist can help to identify areas of strength and vulnerability in the family system and define the warning signs that would warrant seeking therapy in the future.
Some couples enter their new roles with a host of existing challenges. It is not the special needs parenting alone, but rather a combination of factors that can lead them to experience mental health problems. Working through any existing issues that could become a larger problem when caring for a child with disabilities becomes important and is often time sensitive.
Many of the big things in life are uncertain. Most of us manage to distract ourselves from our lack of control as we go about our daily lives. The prognoses of special needs children are often difficult to make with certainty. There is often a substantial margin of error. Special needs parents cannot reliably predict how the life of their child and, by extension, the lives of all family members will unfold. They are reminded of the uncertainties as well as the fragility of life every single day.
One of the most painful aspects of a serious childhood diagnosis is the parents’ sense that they are unable to protect their child from physical harm and suffering. There is also a chronic fear of doing something wrong in caring for their child. Painstaking, repetitive and delicate procedures become vital for the child, leading to parents accumulating tightness in their muscles and an increasingly sober perspective on ever feeling light-hearted again.
Educating the parents about the child’s disorder’s psychosocial demands over time in relation to its development across childhood and adolescence can evoke a greater sense of being in control. Identifying the controllable aspects of their situation, such as researching information on their child’s illness and having an informed say in his or her treatment, can help them to move from feeling helpless to a sense of mastery.
Addressing unhelpful guilt and blame
Special needs parents can become unreasonably demanding of their time and energy to offset feelings of self-blame and fears of being viewed as neglectful. You can help special needs parents overcome irrational self-blame and encourage them to think more flexibly about what constitutes competent parenting. Illness beliefs that entail parental guilt are best addressed in the early stages of treatment. Special needs parents desperately need reassurance that they are handling their child’s illness as best they can and that bad things do happen to good people (Rolland, 2018).
Addressing the needs of well siblings
It is equally important that a therapist help the family to balance coping with the child’s illness with the rest of family life, especially the needs of other children. Encouraging open acknowledgment of the child’s illness within the whole family facilitates flexible communication and prevents the child and/or his or her siblings from resorting to fantasies about what is wrong or different about him or her. Direct and clear information and supportive reassurance from parents are the best preventive medicine for well siblings (Rolland, 2018).
When more experienced special needs parents seek therapy
Listen sensitively for sacrifices made. At the point of diagnosis, special needs parents often have to let go of previous roles. For many mothers, a child with a disability means resigning from a job or career. In Wright’s 2002 study, 9 out of 12 mothers were unable to continue their careers, thus creating a professional void and new financial concerns.
Our world expects children and adults to adhere to social rules. We are all quick to judge individuals who behave differently. When our children behave inappropriately, onlookers often believe it reflects on the quality of our parenting. Moving around public places can become uncomfortable for special needs families, as people often stare at their child or visibly turn away or avert their gaze. The notion that your child could be persistently avoided, ignored or rejected can be heart-breaking. Being in an intense caretaker role can cause unintentional distancing between the couple and their wider community. An ill child can evoke all sorts of reactions in friendship circles, ranging from spontaneous wishes to help, to pure avoidance. Friends often feel tongue-tied amidst the couple’s grave circumstances. Equally, special needs parents might struggle to get out of a threat-based mode of thinking, which doesn’t lend itself to participating in light mundane conversation with friends or at work.
Family support varies greatly across special needs families. Sometimes families can join together in a moving display of solidarity. Sometimes the extended family shows a painful and disillusioning lack of involvement. It is good to enquire about existing support structures and any feelings around the level of support special needs parents are receiving. This impacts directly on how much respite they are able to enjoy within their carer roles.
Relationships with nurses and other professionals who regularly enter their home also colour the daily experiences of the family. Ambivalence is not uncommon. A regular night nurse may, for example, constitute both an enabler for restorative sleep and a frequent invasion of privacy in the home.
Experts claim that more than 50 per cent of marriages crumble when a child develops or is born with a disability. Previously healthy relationships can fall apart with the lack of quality time spent together, broader family tensions, financial burdens, and the emotional strains of raising a child with special needs. During a crisis with their ill child, most parents feel both a pull to support and a pull to criticise each other (Lavin, 2001). In strong couples, the support wins; in blaming couples, guilt wins and the blame can become paralysing. Partners, both exhausted and overwhelmed, often point their fingers at each other, convinced that they got the shorter end of the stick.
As a therapist you can help the couple to increase the amount of time they spend together, as well as the quality of their communication. Carefully enquire how their child’s disability affects their interactions. You can make a real difference in helping them to work through any complicated emotions that surface and to view themselves more as teammates, who need to learn better cooperation.
Time is a huge sacrifice in many respects, but it is often felt most when sitting in hospital waiting rooms and pushing through administrative red tape. Special needs parents often have to fill out forms several times a week to get the medical care and therapy interventions they feel their child needs. Sometimes this can feel like a part-time job.
Enquire about self-care
Special needs parents often feel there is no time for a regular exercise routine or to cook elaborate healthy meals. Their sleep deprivation can cause all sorts of knock-on effects, including decreased immunity. Helping the couple to structure their time more effectively can free up a few hours a week for pleasant activities and rest. A healthier diet can leave them feeling more energised.
Supporting positive sentiments and a more hopeful outlook
Restoring a sense of pride and achievement
In addition to the usual tasks of parenting and running a household, special needs parents can lie in bed at night ruminating. It can be particularly hard for them to feel a satisfying sense of completion or pride in what they do when many of their daily challenges are repetitive and appear never-ending. It often feels like all their energies are invested in just keeping the family afloat, rather than building up towards something new that is measurable. As a therapist, you can encourage the couple to feel proud of their special family and the resilience and strength they hold as a team.
The role of faith
When couples follow a religious tradition, it can become a source of comfort or another source of loss, sorrow or anger. When a child is born with a serious health condition, questions like, ‘Why did God do this to my child?’ or, ‘Why am I being punished?’ can arise. One partner may experience religion or a spiritual focus as a resource while the other partner feels abandoned by God. Additionally, different worldviews and cultures bring different ways of perceiving suffering.
A truly special child
As a therapist you should always focus the parents on identifying in what ways their child is a source of inspiration and growth. Sometimes a special needs child can remind parents of what really matters in their lives, or unveil their true strength and resilience.
I have observed that the quality of life for some families deteriorates while other special needs families forge ahead and thrive. A major health crisis can shake the foundation of a family, but it can also awaken family members to opportunities for more satisfying, fulfilling bonds and life pursuits (Rolland, 2018). A therapist might find wisdom and strength in experienced special needs parents, when it comes to letting go of trying to control things and living life day by day.
Wright (2002) reported that most mothers in her study required a minimum of six months to a year to integrate and fully process their infant’s disability. This was a period of self-transcendence. As time passed, the mothers became assertive, possessed authoritative knowledge, and became the single most important advocates for their children. Wright also noted that the special needs mothers in her study held a deeper appreciation of life in general. For them, life improved and became happier. Final statements from two other participants in her study exemplify this appreciation:
You appreciate life; you understand it a little bit better. You understand, you know that life is not perfect…. What if he was a normal 5-year-old? How much easier would life be for me? But then… you wouldn’t appreciate it, though. (p. 122)
I have a fuller life because of my child. You know, it’s hard to believe – but I’m thinking this has made me maybe a better mother than I could ever be. And I feel like this has added a whole dimension to my life, to my whole being. (p. 129)
There may even be a beautiful paradox to having an infant with a disability. As the disability is accepted, the parents can transcend the experience and may even interpret it as enriching their lives. Landsman’s qualitative research revealed that mothers caring for a child with a disability redefined quality and what was meaningful and most important in life. These mothers even redefined motherhood itself.
- Lavin, J. L. (2001) Special Kids Need Special Parents. Berkley: Penguin Group.
- Landsman G. (1998) Reconstructing motherhood in the age of ‘perfect’ babies: Mothers of infants and toddlers with disabilities. Signs: Journal of Women in Culture and Society, 24: pp. 69–99.
- Rolland, J. (2018) Helping Couples and Families Navigate Illness and Disability: An Integrated Approach. Guilford Press: NY.
- Wright J. (2002) Transcendence: Phenomenological perspective of the mother’s experience of having a child with a disability. Doctoral dissertation, Widener University, 2002. Dissertation Abstracts International, 63–12B.