I remember the first time I heard the news. I can still hear the clinician’s voice telling me that my child had a neurodevelopmental disorder. I had been expecting my child to score better on the assessments and was anticipating a simple conversation about my child needing some basic speech therapy. Instead, my child would be attending a special preschool for children with similar needs. How did I miss this, and what would this diagnosis mean for my child’s future?
Many families each year receive a child's new diagnosis of a neurodevelopmental disorder, diagnoses such as learning disabilities and delays, speech and language delays, Autism, and ADHD. The news of the diagnosis can be a relief for some families or can feel overwhelming and shocking for others. The diagnosis is not within parents’ control, but there are many things parents can do to move forward after receiving this news.
First of all, it’s helpful for the parents to maintain as positive a perspective as possible. Children are more than their diagnoses, as the diagnoses are only part of how children function. A diagnosis simply gives some clear understanding of the struggles and provides a direction of how to assist with the struggles. Our children are fearfully and wonderfully made even with this new diagnosis. God has a wonderful plan for our children and that plan has not changed.
Psalm 139 says, "Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
God loves you and your child and all of your days are within his plans. He has not left us alone in the struggle, but he walks with us as nothing is hidden from his sight. I often refer to disabilities as “other abilities”. Many times, a disability can strengthen other abilities or give children an advantage or strength that may not exist in the absence of this diagnosis. Some parents may notice their child is highly gifted in other areas. These gifts and strengths often bring great joy to the family.
It is helpful for parents to give themselves permission to have feelings regarding the new diagnosis and to process these feelings. Many parents go through a grief process after the evaluation. It can take years to move towards accepting the symptoms and diagnosis. Parents may experience these feelings at each new phase of their child’s life, especially if the child is at a much different developmental age than his or her chronological age. Some parents reach levels of acceptance more quickly than others. Each family’s experience is unique and parents should minimize comparing their feelings to other parents’ feelings and life situations.
Developing a positive support system is also beneficial for parents. Many parents find that having supportive friends and family is extremely valuable. Some parents may experience feelings of loneliness or isolation due to the parenting demands and lack of time to connect with others. Parenting children with neurodevelopment disorders presents unique challenges, and a positive support system will be encouraging. Many parents also find it helpful to connect with other parents whose children have similar diagnoses and challenges. Connections can be formed through natural interactions such as being acquaintances or through support groups. Connect with others who understand.
It is also essential to research and have proper care and services in place. These services include occupational therapy, speech therapy, behavioral therapy and mental health counseling, and respite care. Many areas offer government funded programs for early childhood intervention. Parents can research local programs and services being offered, such as state services and service provided through the local school district. School districts can be involved in evaluating and providing services to the child. Parents may choose to utilize private services as well and should check with their insurance company about coverage.
When caring for children, especially children with additional needs, it is important for parents to prioritize caring for themselves physically and emotionally. Caring for children depletes mental, emotional, and physical energy. When parents do not have the rest or break they need, they can become exhausted, emotionally checked out, moody, or unable to adequately give their time, energy, and affection to their children. Self-care often is overlooked by parents. Many parents with children with neurodevelopmental disorders struggle with self-care due to limited time and resources, lack of appropriate childcare, and parental guilt. It is important for parents to refill on those resources through engaging in enjoyable activities without parenting. Self-care does not have to be expensive or overly time consuming. Parents can take time to exercise, engage in weekly or monthly hobbies, read, and simply have some quiet time to themselves. Invest in your marriage, invest in yourself, and you will be better equipped to care for others.
Parenting a child of a neurodevelopment disorder, although challenging, can be a rewarding life experience when parents keep a positive perspective, have the right resources and support, and care for themselves. You never need to be alone in this journey.
Rev. Dr. Rob Toornstra
Rev. Deb Koster