Written by Rebecca Bardenhagen, M.Ed. and Lakshmi Mahadevan, Ph.D.
Several disabilities exist that can cause stress for parents/guardians both at the time of diagnosis as well as when coping with the child’s ongoing disability. Current research shows that Autism, Attention Deficit Hyperactive Disorder and Learning Disabilities occur most commonly. Following are ways for parents/guardians to cope with the stress and diagnoses of these commonly occurring conditions:
When a child is diagnosed with a serious, lifelong condition, it is stressful for the people who love the child. It is frightening and sometimes overwhelming to face an uncertain future and the prospect of making decisions that will affect a child’s life. Having some strategies to deal with the stress of diagnosis may help parents/guardians feel more a part of their child’s life and more empowered to make important decisions, with the support of professionals. It is important to remember that a diagnosis is an important first step to receiving services (National Autistic Society, 2008). It is also important to remember that the child is still the same child they were previous to the diagnosis, but now people have information to help them develop to their fullest potential (National Autistic Society, 2008).
Parents/guardians may find it helpful to seek out as much information as possible on the diagnosis. The Internet can be a wonderful source of information, but parents/guardians are cautioned to seek out more information and verify the information found there, especially as it applies to treatments. It is necessary to understand that it takes time to adjust to this new situation, and it is natural and understandable to feel upset and frustrated. Parents/guardians should try to take some time for themselves individually and as a couple, as the stresses of caring for a child with a disability can strain a marriage or relationship and sap one’s inner resources.
Parents/guardians may need to seek support groups with others who are experiencing similar circumstances. These groups can be helpful from a perspective of support and dissemination of information, and they can function as a social outlet for the child, their siblings, and the parents/guardians. Parent/guardian advocacy groups can also help newly diagnosed families obtain services and community supports, as well as offer advice for educational decisions. Parents/guardians should remember that they know their child best and should be cautious when they are called upon by professionals to make decisions if they are not convinced the decision is in the best of their child (Autism Speaks, 2009).
The parent/guardian is more likely to stay positive and accomplish their goals if he or she is given some help.
Remember, it is okay to have a bad day. No parent/guardian is perfect all of the time, even under ideal circumstances. Raising a child with a disability is stressful, both emotionally and financially. Some parents/guardians find it helpful to write in a journal or talk about their feelings with a professional or friend.
Attention Deficit/Hyperactive Disorder
The child diagnosed is not the only one that is affected by ADHD. The child’s family is also influenced by the issues concerning ADHD. The following are ways that parents/guardians can gain support and knowledge about ADHD:
Family Counseling – Mental health professionals can assist parents/guardians and children to develop techniques for managing the child’s behavior patterns. In some situations, it may only be the child with ADHD that needs guidance, but most of the time it is very helpful for the whole family to gain support and knowledge about problems concerning ADHD (NIMH, 2016).
Support Groups – Parents/guardians of children with ADHD can share any frustrations or successes they experience, make referrals to certain specialists, share information and ideas that work, and listen to lectures given by ADHD experts. This will let parents/guardians know that they are not alone in the problems they face concerning ADHD. It will also give them a comfortable and safe environment to talk with others who share similar concerns (NIMH, 2016).
Parenting Skills Training – Techniques for managing their child’s behavior are taught. Parenting skills training can be offered by therapists or in special parenting classes offered by the community or in support groups. Some examples of strategies offered by parenting skills training include rewarding good behavior, learning how to use a system of rewards and consequences to change behavior and encouraging positive behaviors by giving immediate feedback and redirecting behaviors they want to change.
Stress Management Methods – Help with tolerance when situations become frustrating is gained. Such stress management methods might include exercise, meditation, and relaxation techniques. These methods can help parents/guardians to respond calmly and effectively to their child’s behavior (NIMH, 2016).
Behavioral Parenting Training (BPT) – Social learning principles are used to provide parents/guardians with behavioral modification techniques. According to CHADD (2017), The National Resource on ADHD, BPT involves the following components:
- Establishing house rules, structure and consistent routines
- Learning to praise appropriate behaviors and ignoring mild inappropriate behaviors
- Using appropriate commands
- Using “when…then” contingencies (withdrawing rewards or privileges in response to inappropriate behavior)
- Planning ahead and working with children in public places
- Time out as a consequence for inappropriate behavior
- Daily charts and point/token systems with rewards and consequences
- School-home note system for rewarding behavior at school and tracking homework
Often, when a child has a learning disability (LD), he or she does not understand what this means, and they believe that they are not intelligent due to struggles with learning. In fact, children with LD generally have average to above average intelligence and some studies have indicated that up to 33% of children with LD are gifted (NASET, n.d.).
It is important for a parent/guardian to talk to a child about LD, so they understand why they learn differently. Without this understanding, the child may believe they are “dumb” and not able to learn (LD Online, 2007). Providing accurate information about what a learning disability is and what it is not is an important step in motivating the child in the classroom and maintaining their self-esteem. The following advice for parents/guardians is offered by LD Online (2007) about how to talk to children about a learning disability.
- It is important that the child recognizes LD is an identifiable, measurable, treatable, and common problem.
- Clear up any of their misconceptions about LD.
- During the discussions, emphasize the child’s strengths, be realistic about the child’s weaknesses, and be optimistic about the child’s future.
- Remain honest, sensitive, and age-appropriate for all comments and answers about LD.
- This demystification will help the child become more independent and a better self-advocate for themselves.
Exactly how to explain the child’s learning disability may be a daunting task for some parents/guardians. LD Online (2009) offers suggestions by Ania Swiek, a child psychologist, about how to do this. The method she suggests is for children in the fourth grade, but it can be modified to speak to younger or older children as needed. Siwek uses a traffic metaphor to ask parents/guardians to explain what happens in the brain of a person with a learning disability.
1. Explain how everyone learns. Everyone has “highways” (pathways) in their brain full of “cars” (information) taking them to “garages” (specific areas of the brain).
2. Next, explain what it means to have a learning disability. In the brain of a person with a learning disability, some, but not all, of the highways have traffic jams. Sometimes that traffic jam is quick, but sometimes the traffic jam seems like forever. When someone has a traffic jam on their reading highway, it could be difficult to recall letter sounds.
3. Lastly, explain to the child that he/she has limitless potential. Explain to the child that there are “tricks” like “side roads” that can help the child get around the traffic jam; the child’s teacher, tutor, or parent/guardian can help the child find the side roads. Sometimes these side roads may take a little while. No side road is perfect, and sometimes the child might make a mistake. All the parts needed in the brain to be smart are there; it might just take a little longer to learn things.
Overall, parents/guardians must make sure the child understands that he or she has a supportive system made up of family members and professionals that will aid and guide him or her throughout their schooling (LD Online, 2007).