After the Diagnosis, Then What?

sunset-2-textParents who realize their child is struggling, who suspect something is amiss, will seek out the advice of a pediatrician, a psychologist, or perhaps another professional. At first, parents don’t want to notice that their child isn’t perfect. They may suppress their feelings, but eventually, if their child is not achieving the usual milestones, some professional they know may suggest testing. That person may diagnose a disability, which leads to the question: “Now what?”

Varied and Complex Reactions

Receiving a diagnosis of a learning disability or a developmental delay can be devastating and surprising news. Some parents deny that there is a problem and will not accept the diagnosis. Other embrace the diagnosis and research everything about it. Some will share it with other parents and some won’t.

The reasons for these varied reactions can be complex.

For some parents, a diagnosis of a disability brings out fear and shame. They refuse to let their school know about the diagnosis, believing that there is a stigma to having a child in special education. Fearing the label “disabled,” they refuse to explore the option of special education services, hoping their child will get by without additional help.

For other parents, a diagnosis brings a sense of relief. Once they understand what is behind their child’s issues, they can begin to plot a course of action to help their child more forward.

Grief, Disappointment, and Acceptance

For most parents, there is an initial grieving process. Their beliefs about their child may be challenged. What if their child won’t be able to go to college and achieve in a similar fashion to themselves? What if the diagnosis means a new way of life and a change of plans and expectations?

Grief and disappointment are common reactions.

Some parents even feel anger toward the professional who made the diagnosis. Others blame each other for being the cause of the disability. Fatigue sets in as parents struggle to understand what professionals are telling them.

Receiving a diagnosis for a child is a hard experience, but accepting the diagnosis can eventually lead to a positive outcome for your child.

Working Through the Confusion

Because there are a variety of diagnoses that a child can receive, the process becomes confusing. Parents hear terminology that they have never heard before and feel even more confused. People they have never met before will be delivering complicated news about their child. Many parents wonder if they can trust the opinion of a stranger who doesn’t know their child the way they do. Fortunately, there are things that parents can do to help them work through the confusion and put them on the road to becoming an advocate for their child’s education.

What You Can Do

  • Locate a Parent Training and Information Center: Each state in the United States has a federally funded Parent Training and Information Center. These centers can advise you of resources in your area. Go to The Yellow Pages for Kids at the Wrightslaw website to find a center near you.
  • Ask for a Referral to Special Education: Contact the special education department in your child’s school district to request assessments in all the areas in which you suspect a disability. As long as your request is in writing, schools must comply with your request within a specific timeline set by your state’s department of education.
  • Build a Team of Independent Professionals: Seek out independent experts who can do a comprehensive and objective assessment of your child’s special needs. Relying only on school testing can lead to a narrow view of your child, sometimes with important information missing.
  • Understand the Terminology: Parents will hear many new terms for different disabilities such as Attention Deficit Hyperactivity Disorder, Nonverbal Learning Disability, Cerebral Palsy, Tourette’s Syndrome, or Autism Spectrum Disorder. Be sure to ask the professional who gives you the diagnosis to be clear and explain the term so you can understand it.
  • Locate Parent Support Groups: Seek out groups of parents who have children with disabilities. Other parents can be a great source of trusted information. Find local groups of national organizations that are pertinent to your child’s disability, such as such as CHADD or the Autism Society.
  • Do What You Can in the Moment: We have discovered that mindful living is especially helpful when you have a child with special needs. It is pointless to project many years into the future and worry about your child’s well-being then. It is easier and healthier to focus on what you can do today, this week, or this month to help your child.
  • Remember That You Are Not Alone: Thousands of parents have children who get a diagnosis of special needs every year. Consider family members, friends, neighbors, and clergy as sources of support. If you belong to a faith community, ask if there is a special needs ministry. Many churches have them to create accepting communities for children and teens with special needs.

Judith Canty Graves and Carson Graves

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