The beginning seems to be the most difficult for most parents. Dealing with the initial diagnosis can feel like a shock wave of disbelief, fear and questions about what you don’t know. Parents new to the situation ask, “What is going on with my child? What can I do to help my child and where do I go to find help?” Parents often feel alone, confused and unsettled. It is unsettling to live in a state of limbo with very few answers to the medical, social, academic and emotional problems your child faces. Parents strive to find peace by figuring out what steps they should take to best help their child.
If you are a parent who has recently received a diagnosis for your child, I hope you will find comfort to know that you are not alone when you find yourself searching for answers. So, what do ‘not so new’ parents say about how they found peace within this state of limbo?
You can start by finding professionals who ‘truly’ understand. Finding professionals who truly ‘understand’ is essential. You may work with many professionals such as primary care physicians, orthopedic physicians, neurologists, psychiatrists, psychologists, speech, occupational and physical therapists, teachers, academic specialists and financial professionals who help you manage trusts, wills and other legal documents. Many of these professionals are very knowledgeable about ‘typically’ developing children, parenting, discipline techniques, therapy, financial planning and educational interventions. Before you start working with a particular professional, ask yourself, “Are they knowledgeable about children with disabilities and the special needs that define our situation? Do they have experience with children who communicate, think, respond or behave outside of what is typically expected?”
Don’t be fooled by years of experience and numerous certificates hanging from the wall. While credentials are impressive in terms of academic achievement, they are not an indication or guarantee that they understand the needs of our children.
Many professionals are trained to deal with ‘typically’ developing children but may NOT understand the needs of children who develop at a different pace and/or who have sensory or communication needs that fall outside of typical expectations. To find a professional who truly “understands”, parents need to listen carefully to how the professional, in any field, responds. When you talk about your child and their needs, do you feel like you are in a performing in a play, informing the audience of an experience that you hope they comprehend? If so, move on and find professionals who are knowledgeable about children with special needs. Find professionals who have a true understanding of who your child is, how your child communicates and what your child needs. One by one, you will build a team of professionals from doctors, teachers to caregivers who truly understand who you are, where you are and what the next step should be to ensure the best outcome for your child.