Why is Parent Participation Important?
Parent participation is vital to a child’s success. This may seem like a bold statement, but the truth is that if a child’s parents are not involved in their child’s therapy programs the likelihood of success is much lower. This is because when parents are involved in the development and implementation of interventions the intervention procedures are more likely to be used across contexts and people and the child is likely to learn and use skills more quickly. If, on the other hand, teachers and therapists develop and implement interventions but these interventions are not supported or implemented at home the skills are likely to be learned slower and the likelihood of them having long term benefit is going to be small.
Important Issue to Consider: Stressors and their Impact on Families
There are many stressors which impact families of children with autism which need to be addressed. It’s important to families to understand the sources of stress and how to deal with those stressors so they are more readily available mentally and emotionally to help their children. There are five main categories of stressors which may impact families:
- Transitional Stress
- Family Functioning Stress
- Emotional Stress
- Caregiving Stress
- Stress from Negative Professional and Societal Attitudes/Assumptions
- Professional assumes they know what is best for the child.
- Judgmental and stereotypical attitudes about family actions or lifestyles.
- Assumptions that lack of involvement equals lack of care about the child.
- Negative attitudes or animosity towards parents who strongly advocate for their child.
- Blaming parent for the child’s problems.
- Over-emphasis on negatives when communicating with parents.
- Doing only the minimum required rather than providing the best services possible.
Transitional stressors are those which come during times of change in family dynamics and roles. Transitional issues related to diagnosis, entering school and leaving school may create confusion and conflict in families. Upon diagnosis typical reactions include shock, disbelief, denial and anger. While the diagnosis may confirm something the parents already suspected, it doesn’t provide parents with any information about what the diagnosis means for their child’s progress and development. During transitions into school and between school years, families can become stressed due to awareness of differences between the child and their peers or how well their child acclimates to the school environment and new demands. When an individual is getting ready to transition out of school this can create another stressor for families due to uncertainty about the future for the individual in terms of vocation, residence and other life issues.
Having a child or family member with autism can positively, negatively or neutrally impact family function. There are eight main family functions: affection, self-esteem, spirituality, economics, daily care, socialization, recreation and education. Stress can be caused by a family not being able to meet their needs in one or more of these areas.
Following diagnosis many parents and family members will experiences grief feeling states. After the initially feelings of shock, families are expected to go through the natural stages of grief including denial, guilt, depression, anger and anxiety. It is anticipated that these negative feelings will eventually give way to acceptance of the situation and family reorganization. It is thought that parents experience the stages of grief upon diagnosis because their dreams and hopes for their child have been altered.
The added responsibilities for parents of children with a disability include physical care (i.e. feeding, dressing, toileting, and navigating environment), medical care (i.e. diet, medication, and therapies), constant monitoring, managing problem behaviors, and other assistance (i.e. academic, socialization, adaptive skills, and communication). These additional parenting responsibilities can drain a parent’s time and energy which can cause them to be susceptible to stress and anxiety. The child’s constant dependency on the parent, along with the thought that the dependency may not lessen over time as would be expected with a typically developing child, can add to parental stress.
The impact of negative interactions with professionals and other members of society are many times seen as the most potent stressors on families.
These negative attitudes and assumptions from professionals can cause feelings of being criticized, devalued and alienated. Parent’s can also fall victim to negative attitudes and assumptions from family members, friends, and other members of their social support network. These people may not feel comfortable around individuals with disabilities or they might not know what to say to the parents to console them during difficult times.
Important Issue to Consider: Coping with Stress
In order to cope with stress, families need to learn how to adjust and adapt. To reduce stress, families can engage in practices to systematically reduce stressors and learn new coping skills. There are two main strategies for coping with stress: stress reduction techniques and support strategies.
- Stress Reduction Techniques
- Support Strategies
It is important for parents to realize that taking care of themselves and their family is just as important as taking care of their child with a disability. This may seem trivial, but if a parent does not take action to learn how to relax and take temporary breaks from problems and responsibilities, there is an increased risk of isolation for the whole family. By taking steps to reduce stress, parents can avoid or lessen potential risks to themselves and their family.
One way to reduce stress is by engaging in passive appraisal techniques. These techniques include denial, refusal to think about the future, and relaxation. Denial is one of the grieving states and has an adaptive function by giving the person time to assimilate new information into their reality. Relaxation techniques may include deep breathing, muscle relaxation, visualization, meditation, yoga, exercise, massage or listening to music.
Another stress reduction strategy is self-monitoring of reactions to stressful events. Using journal writing and self-evaluation of tension levels can help parents identify their own symptoms and triggers of stress. When you know what triggers your feelings of stress, and what symptoms you have when stressed (i.e. increased heart rate, distorted thinking, etc) you can more easily take action to reduce stress in the moment.
An additional way to systematically reduce stress is for parents to create a prioritized plan of action to address stressors. First parents need to make a list of stressors in their lives. Then, those items which are beyond their control or deemed unworthy of time or energy are crossed off the list. Next, parents identify the stressors they impose on themselves. Finally, the stressors on the list paretn feel they can positively address are circled. This exercise can help parents identify a prioritized plan of action which can give them focus and direction in addressing the stressors that impact their lives.
Families that seek out and access personal and professional support services are able to cope with stress better. There are many kinds of support services available to families including parent social support, professional formal support, and respite care.
Parent social support includes the supports (i.e. emotional, informational, or material) parents receive from friends, relatives, neighbors, coworkers, or others. These supports can be provided in a group or one-to-one format. Many parents access these supports through parent support groups at which they can learn about a variety of topics (i.e. accessing services, managing challenging behaviors, teaching new skills, etc.) and talk to other parents about their experiences raising a child with a disability. These supports are also available through relationships with professionals who are able to provide them with information, materials and emotional supports in response to any questions or concerns a parent may have.
Professional formal supports include those services provided by community agencies and professionals. These supports can also include those services provided by a counselor, psychologist or psychiatrist to guide parents and families in coping with the stressors in their lives. One major support professionals can provide is to teach parents the skills necessary to engage in effective problem solving. Effective and efficient problem solving skills can help alleviate a lot of stress for parents because they can become part of the solution when addressing issues surrounding their children. The six basic steps of effective problem solving are: (1) identify and define the conflict, (2) generate possible solutions, (3) evaluate the pros and cons of solutions, (4) decide on the best solution, (5) implement the decision, and (6) evaluate the results of the decision. When parents and professional can collaborate in the decision-making process, the potential for stress (especially around professionals imposing decisions on parents) can be greatly reduced.
Respite care is a service typically provided through state-funded programs (i.e. Division of Developmental Disabilities; DDD). Many individuals with disabilities qualify for services through these state-funded programs and families are allotted a certain number of respite hours per month to be used when they need them. Respite care is provided to relieve parents of the parenting duties for a few hours, a weekend or several days. Respite care providers should have specific training around caring for a child with disabilities (i.e. managing behaviors, feeding and toileting, emergency procedures, and how to engage children in appropriate activities). This service can be extremely valuable to families because it allows them the freedom to “get away” when needed (i.e. errands, parents-only vacation, etc.) with the peace of mind that their children are in qualified and competent hands (note: not all respite care providers are provided with the same level of training; therefore, it is very important to make sure they have training specific to your child’s needs).
Parent Participation: School Support Services
There are five basic components of strong school support services which lead to meaningful parent participation. As a parent, these are things you should be looking for and asking for when working with school professionals to maximize your participation in your child’s education. The five components are: (1) effective programming for students which includes highly qualified teachers and support personnel, (2) regular and ongoing opportunities for exchange of information between parents and professionals, (3) opportunities for participation, advocacy and partnerships, (4) training for parents to help implement programs and interventions at home, and (5) problem-solving, coping, and emotional supports for parents and family members.
Parent Participation: Community Support Services
There are a variety of community supports that families may need to access to address their daily living needs. Having a child with a disability can greatly impact parents and families which can lead to the family needing to access community supports. There are eight main areas in which parents may need support and there are different community supports available to address each.
- Daily Care
Parents may find themselves in a place emotionally where they are lacking the affection or emotional support they need. There are many resources to address this including parent education programs, parent support groups, family counseling and child abuse prevention agencies.
Having a child with a disability can take a toll on the self-esteem of parents and other family members. To combat this, members of families can seek out support from community recreation programs, youth groups (i.e. boys/girls clubs, Scouts, etc.), parent training and information centers or mental health agencies.
Parents and families may need to seek out spiritual support to help them make meaning of their experience having a child with a disability and develop a religious community that can provide emotional support. These supports can be found at religious organizations and at parent support groups.
Having a child with a disability can take a toll on a family financially which can cause a lot of undue stress on the parents and other family members. Community agencies available to provide support to families include public assistance agencies, Social Security Administration, Medicaid, family support programs, vocational rehabilitation agencies, estate planning services from attorneys or disability organizations, and health care organizations.
Many families need assistance on a day-to-day basis with the care of their children. Community agencies available to assist families include Medicaid (Katie Beckett program), respite care agencies, home health care agencies, independent adult living centers, and other childcare organizations.
Having a child or a family member with a disability can be isolating for parents and family members; therefore, it is important to seek out socialization opportunities. These opportunities can be found in a variety of places including sibling and parent support groups.
Many families need help finding activities to do outside of the house with the children. There are many special summer camps, community recreation programs, local libraries and other community organizations (i.e. YMCA) available to help families find fun recreational activities for their children to participate in.
Parents, when their child is diagnosed with a disability, are plunged into a foreign world of intensive interventions, special education, and assistive technology. To gain the training necessary to understand and use specific techniques, interventions and tools parents can seek out programs offered by protection and advocacy agencies, parent training and information centers, assistive technology organizations, early childhood agencies, or post-secondary education institutions.
Parent Participation: Educational Advocacy
The Individuals with Disabilities Education Act (IDEA) recognizes that parents are their child’s best advocates and the law includes specific rights which serve to empower parents in this advocacy role. These rights include the guarantee of a free appropriate public education, mandatory notification by school personnel for proposed changes to the child’s program, ability to initiate an evaluation at any time, requirement of informed parental consent for evaluations, power to obtain an independent educational evaluation, right to review all educational records, requirement that the school must fully inform parents of their rights, participation in the development of the IEP, requirement that children be educated in the least restrictive environment, and ability to request a due process hearing to resolve differences with the school.
Parents are the most natural advocates for their children because they know the child best and because increased parental participation is correlated with increased child success. Additionally, parents are most effective at advocating for their child because they are emotionally invested in their child’s welfare and they are the most constant people in the child’s life. When parents are involved and advocate for the rights and meaningful education of their child amazing things can happen.
There are a few key principles for effective advocacy: ask for what you want, be specific and detailed in your requests, stay flexible in finding solutions to concerns, keep requests clear and concise, look at issues from the perspective of others, build and preserve your credibility, never burn any bridges and follow up. If parents are able to do these things when addressing issues with school personnel or other community members/organizations a lot of positive change can and will happen.
Parent Participation: Positive Behavioral Interventions
If a child exhibits problem behaviors, it is vital that parents be involved in the assessment procedures, behavior intervention development and intervention implementation.
When assessing the behavior (i.e. Functional Behavior Assessment; FBA) it is important for parents to be involved so they can provide additional information about the child and behavioral patterns, describe the level of concern around the behavior, provide access to non-school environments, act as an additional observer and data collector, provide alternative hypotheses regarding behavioral functions and information about contextual variables outside of school settings.
When developing an intervention (i.e. Behavior Intervention Plan; BIP) it is important for parents to be involved so they can assist in the identification of appropriate intervention techniques and replacement behaviors. In order to effectively change behavior using an intervention plan, the plan needs to be implemented with fidelity and consistency across people and settings. This means that parents need to be trained in the implementation of the intervention techniques as well so they can implement the same intervention. This component is vital to the success of a behavior intervention plan because parents spend more time with their children than teachers do and are just as likely to see their children engage in problem behaviors. If everyone in the child’s life is implementing the same intervention procedures, the child is likely to learn the replacement behaviors at an accelerated rate.
Resources: “Parents and Families of Children with Disabilities” by Craig R. Fielder, Richard L. Simpson and Denise M. Clark.