By Anonymous
Parents of children with disabilities and special health care needs are a different breed. We are parents PLUS researchers, advocates, case managers, tutors, nurses, and coaches. A surprising amount of parents have more than one child with who is not neurotypical. When this happens, we have more tools in our toolbox but we’re also pulling from depleted reserves of whatever coping mechanisms we rely on. It’s both easier and harder the second time around. You’re able to roll with the punches because you have been there done that. Still, the emotional trauma takes its toll.
About six years ago, when our oldest was in the fourth grade, my husband and I started the long and arduous process of obtaining the appropriate psychological and educational supports. I remember feeling as though we were fishing for a diagnosis, searching for treatment, medication, or any remedy we could get our hands on to relieve his suffering. After six months, we finally had a mental health diagnosis and treatment plan in place. We have tweaked, adjusted, and fine-tuned his treatment plan over the years; a process that will continue so he can lead the life he wants. Today he is a sophomore in high school, reaching goals and accomplishing more than we could have ever imagined.
This pandemic and the subsequent shutdown took its toll on my youngest child. I never imagined that our family would be thrust into the all too familiar experience of seeking mental health support for our daughter.
After five weeks of testing, appointments, endless emails, phone calls, and research, we finally have a formal diagnosis and proposed treatment plan for our her. Having already gone through the educational and psychological evaluation process with my son, I could not help but compare the two experiences.
The process was shorter the second time around.
The evaluation process took six months for my son and five weeks for my daughter. The first time around, I can remember being in total shock and denial that there was something wrong. I dragged my feet, hoping that it would go away. By the time I finally accepted that we needed help, he was in crisis. This time I recognized the early signs and skipped over the denial phase. I was laser focused, looking through old resources, utilizing previous connections and alerting the school of my concerns.
We were more proactive the second time around.
When we pursued an evaluation for our son six years ago, his grades had fallen significantly and his mental health had been on a downward spiral for several months. Our family, school professionals, and health care providers were reacting to the crisis. Each day there was a new hurdle and we were just putting out fires trying to get through each day. This time around, we have been intentional with our actions. We acted before her grades were impacted by her social-emotional decline. We are proactively seeking interventions to avoid a crisis.
We have more resources the second time around.
Six years ago, our daughter was three and we had the added expense of daily child care. My job did not have benefits and my husband was a public school teacher with a limited insurance plan. Money was tight and we had to go through extra channels to find adequate mental health providers for our son’s evaluation process. There were long waiting lists for practitioners who accepted our insurance. Paying out of pocket was not an option, therefore we waited months on end for an initial appointment and evaluation. Once we had a diagnosis, we waited another few months to see a psychiatrist for medication management. There were many limitations and barriers to obtaining proper medical care. Our son suffered longer than he should have to get the help he needed. This time around, I am working full time at a job with great benefits and flexibility. My husband was promoted last year and we have more financial resources to pursue private out of network psychological care for our daughter. Because we are paying out of pocket this time, we did not have to wait months to see a specialist. The evaluation process was swift; the results shared immediately with all parties. That did NOT happen six years ago. I feel guilty about the fact that we are privileged enough to have the resources to pursue out of pocket mental health support. I have worked in the disability field for 26 years and have seen firsthand the health inequities among those with disabilities, people of color and low-income families. Too often, families raising a child with a disability or special health care needs are utilizing Medicaid or have limited insurance plans that do not cover pre-existing conditions. Those same families have to wait longer to access adequate health care. It’s just not fair!
It still hurts.
Despite having more knowledge, time and resources, receiving the diagnosis still hit me square in the gut. Even though we had suspicions about her academic abilities, we were not expecting to hear that our daughter is twice exceptional. She has learning and mental health care needs and she is gifted. Reading through the recommendations presented by the psychologist was a bit daunting. It is such a juxtaposition to have a child with seemingly polarizing needs. You cannot choose one need over the other. You have to address both because they are inter-related. I feel prepared to address her learning disability but I need to do my homework on how to parent a gifted child with a learning disability.
Even though this is not my first rodeo, I still need to hold on tight. I hope that there will be less bumps this time!