When you walk to the edge of all the light you have and take that first step into the darkness of the unknown, you must believe that one of two things will happen. There will be something solid for you to stand upon or you will be taught to fly.”
– Patrick Overton
The evolution of diagnosing a loved one with a special need is messy. It’s a mix of fear, anxiety, sadness, relief, and determination. Then fear, anxiety, sadness, relief, etcetera, etcetera, etcetera. Diagnosing and/or labeling a special need can be scary and exhausting, especially because you don’t know what’s coming, there is so much waiting, and you have no idea what waits on the other side.
The process of receiving a diagnosis is different for everyone. For some, it’s knowing before birth that there is a structural problem with your baby’s heart. Many parents will know by the end of the first year when a child is not reaching milestones, or by three years when milestones that were once achieved are slowly disappearing. Or, your child is making good grades, playing sports, enjoying friends. A seemingly routine doctor appointment happens, or a seizure, or a trip on the stairs, and things will never be the same.
RICOCHETING EMOTIONS
However you might find yourself catapulted into the world of caring for a loved one with special needs, you’ll likely find emotions ricocheting between fear, grief, and hope throughout the process. To begin with, the unknown is synonymous with worrying. There is the initial stage of figuring out what is “normal” and what isn’t. There is no shortage of lists explaining developmental milestones in books or magazines. In hopes of finding comfort, you might look at other lists created by other doctors, but this only results in confirming the suspicion that something isn’t right. Here comes the unknown. And the exhaustion. Special needs parents know what is coming.
TASKS AND MORE TASKS
Making phone calls, waiting on hold, scheduling doctor appointments/counseling appointments/more doctor appointments, talking to your boss about missing work, loading up car seats, driving to doctors, waiting for appointments, meeting with teachers, meeting with school psychologists, talking with experts, filling out forms, remembering where you put the forms, submitting forms and being given new forms based on the previous forms, follow-up appointments, and eventually… you learn what a CSE and an IEP is. Don’t forget this is all happening while still doing everything “typical” families are doing. So clearly, there is a reason for the physical exhaustion.
The initial reaction most caretakers have when they recognize something is wrong is to name and fix it. After all, the sooner you find an answer, the sooner you can spring into action. Unfortunately, a quick answer rarely happens. In many developmental disorders, certain behaviors and characteristics are a sign of any number of things. Central Auditory Processing Disorder (CAPD), Tourette Syndrome, Autism Spectrum Disorder (ASD), and Seizure Disorders can have overlapping characteristics. By labeling too soon, a doctor and/or therapist may miss the big picture. Some treatments are so specific that misdiagnosing a person can keep them from receiving the treatments that are actually most needed. The exasperation of the testing and waiting, only to find out the test revealed nothing, can be extraordinarily painful. It is easy to forget that by ruling something out, you are that much closer to finding out what the issue is.
A LABEL DETERMINES TREATMENT
In the meantime, remember what the label is for. A label will not end the disability. It will not change the person identified. The purpose of labeling a person with a disability is to determine treatment and resources. This could include physical alterations to a home, a communication device, behavioral supports, medication, or various forms of therapy. Labeling too soon may stop doctors from looking at other possible resources needed. Labeling too late may mean valuable help may not come soon enough. That is one reason it’s important to keep scheduled appointments with doctors for well visits, and check in with your child’s teachers to see how they are doing. Follow-up with any questions, get a second opinion, and keep an open mind as you listen to what experts are telling you.
When you do finally receive a label, understand it might evolve. Those with children on the Autism Spectrum have watched the label change regularly. Asperger’s was not always on the autism spectrum, then became part of the “autism spectrum diagnosis” umbrella. Those with “PDD-NOS” are now also on the spectrum. Some parents point out that every autism parent knows every child with autism is drastically different; and there are now three recognized levels of Autism. My own son is more than a level one but not a full level two.
Another challenge to labeling is the dual diagnosis. In some states, schools accept two labels, and modify instruction plans accordingly. New York prefers one diagnosis. In this case, explore the needs of your child and the resources available. Which label will get you the services most needed? Which services make the most sense to your child? A diagnosis also helps with insurance purposes, and some companies provide extra resources for children/family members with various disabilities. A label is required for these supports.
The labeling process can be hard. It is hard. Fortunately, there are a wealth of services to help you find your footing. The Office for People With Developmental Disabilities is an excellent resource for western New Yorkers. For a complete listing of support visit www2.erie.gov. Dozens of websites and descriptions of services are listed. And, Facebook and other social media have many support groups to join as well. You will, with patience, grit, and knowledge, make it through the labeling process. And, probably the most important thing is to love that kiddo, and know that regardless of any label your child might receive, they are amazing, you are amazing, and you will know extraordinary love while on the journey!
Julia Garstecki is a special educator and the parent of a son with multiple disabilities. She is the author of more than 70 nonfiction books for learners with special needs. Contact her at julia@juliagarstecki.com and follow her on Twitter @juliagarstecki.