Written by: Zena Dahleh, Writer and Social Media Coordinator
Parenting is a complex task, especially when your child is diagnosed with a disability/special needs. In addition to the usual parenthood stress that parents experience, parents of children with special needs face other unique pressures and need to find ways to enhance their growth.
Children are diagnosed with disabilities during different stages of their life, some parents learn about the diagnosis during childbirth, and others learn about it as the child grows up. Regardless, disability diagnoses can be a hard pill to swallow, and a common reaction for many parents is to deny it. However, this is a normal reaction, and it is a protective device that gives parents time to adjust and come to terms with the information. Other emotions can include anger at yourself and those around you, fear and guilt concerning the diagnosis, its implications, and what the future holds. Parents might feel like this is their fault and could have done something to prevent it. This guilt also leads to confusion and not fully understanding what is happening. As a result, parents will suffer from sleeplessness, the inability to make decisions, and being overwhelmed. Feeling helpless is another emotion parents feel and rejection. All these emotions are normal and common for many parents
This article encourages parents to set up a second or third visit with the doctor and ask them questions. A few questions to consider:
- Does my child need additional testing, blood work, and assessments by other specialists?
- How do you know my child has ______?
- How will this affect my child’s condition?
- What happens next?
It is recommended that parents record this conversation as it is an emotional time for them so that they may forget critical information. Additionally, it is encouraged to seek a second opinion, especially if parents do not feel comfortable with their current doctor.
Once the diagnosis is confirmed, parents need to talk with their child about it. In this case, timing is essential. If you’re informed about the diagnoses during their birth, your experience will differ from parents who learn about their children’s disability later on. Avoid putting too much emotion in the conversation, as it will influence your child’s feelings. When you express sadness over their limitation or anxiety about their future, it could cause your child to feel that way. Matter-of-factly presents the disability. Discuss the science behind the diagnosis, and be honest about their condition. Present the information in a kid-friendly manner, and use simple answers to their questions. Allow them to ask questions about their disability, especially as they grow older. Finally, ask your doctor to make referrals for services that will provide you and your child.