Experience Morph’s One’s Ideology

Experience morphs one’s ideology. This is so true in parenting. We come to parenthood with all types of ideas and theories. We plan to parent certain ways, and we cannot fathom the choices or actions of some other parents. Without meaning to, we judge, condemn, and say, “I’ll never…”

I (Margie) studied psychology at university in the late 90’s. At that time, there was a large focus on not labeling people. Terminology and names of agencies were being changed so that people were simply people first. For example, my senior year of high school I interned at the Department of Rehabilitation Services in the Division of Services for People who are Deaf and Hard of Hearing. There had been a shift from saying “a [X disability] person” to “a person who has/is [X disability].” This individual-centered focus was vital in the movement towards today where, as a nation, we strive to be strengths focused in serving people.

There was such an emphasis on not labeling people by condition or disability, that there was a push against diagnosing conditions or disabilities. When parents receive a diagnosis, they grieve, even if they suspected the diagnosis for years. The reality is, often, not much changes. They still love the child the same. But the child now has a label. The label sometimes results in judgement and different treatment by others. This desire not to label people, especially children, often fuels a tendency to delay or avoid diagnoses.

A Love/Hate Relationship With Diagnoses

I do not want my children to be judged by others before they get to know who my children are, but I’ve come to develop a love-hate relationship with diagnoses. I have learned that diagnoses are the key to getting services and treatment to help our children overcome and be as successful as possible. Eight plus years into this journey, I wish I would have pushed harder for diagnoses early on with our kids. As our crew gets nearer and nearer to adulthood, we are finding that getting them help now or finding diagnoses for difficulties they face has become harder. It’s also harder to find answers that a social worker would have been more comfortable digging for when the kids were in care.

It is amazing how many diagnoses were missed early in our children’s lives because they were bouncing around in foster care for so many years in so many homes. One child we found out just a couple years ago is CRAZY allergic to cats, and we and other long-term foster homes had cats. Poor kid! Another kiddo was suffering from extreme reflux and probably had been for over a decade. These aren’t as major as some of the other diagnoses that I believe have been missed over the years, but it kills me to think that these kids were suffering through a lack of adults investigating symptoms.

Not having a complete picture in terms of diagnoses has made it particularly difficult to transition to adult services for our oldest child. While we feel a diagnosis of cognitive disability is not the complete picture, that being the main diagnosis makes getting him help unbelievably difficult. When applying for conservatorship (adult guardianship), a disability picture ID, or other adult services, everyone wants a signed document from a medical doctor, and no medical doctor will sign off on a cognitive disability because it’s not their specialty. Sometimes I want to scream, I mean, when was the last time you went to the doctor and they tested your IQ? It’s maddening and incredibly time consuming and has greatly delayed getting him services.

What purposes do diagnoses serve?

• Diagnoses at young ages offset limitations and allow children to reach their fullest potential by accessing interventions as quickly as possible.
• Diagnoses serve to provide children with access to services in the public school system or with vouchers for those who homeschool or attend private schools.
• Diagnoses are the portal to services in the community.
• Diagnoses connect caregivers to specific supports that aid them in helping their children.

I encourage you to go with your gut and to push hard in advocating for your kiddos. If you think a child is misdiagnosed (which happens often with kids in care), push for further evaluation.