Autism today for some parents mingles the ideas and theories of vaccinations, diet, and medicine with unknown risk outcomes. Some parents of autistic kids believe their kids were somehow impacted despite decades of research to the contrary in respect to vaccinations. Given that some autistic kids are non verbal, and/or deaf and blind and incapable of any autonomy of self, it holds that some autistic kids and their families live in the invisible realm of the unknown. Most autistic kids are pretty fun and easy to work with once you can establish a relationship and begin to understand their way of looking at the world; they are kids with the same landmarks of accomplishment as any child in the world could hope for. PARA educators and BCBA’s draw upon a generous yet somewhat limiting palette of ABA (Applied Behavior Analysis) and similar techniques to understand and affect positive behavioral changes. But depending on the child and degree of impact as well as socioeconomic factors perhaps involved, PARA educators and BCBA’s along with parents and family members can feel invisible to the subtleties
People have a tendency to expect certain behaviors out of children that vary with age. And they are willing to make allowances for different expectations if they note a difference that they can easily attribute to some mental or physical challenge.
It becomes quite tricky to navigate the world with a child who has an invisible disability. People are visually presented with a child whom they subconsciously classify as "typical," and the behavior or reactions they receive may not be typical at all.
Parents, therefore, must learn to do a couple of things well. First, they need to become fierce advocates for their child's needs. This looks different for every child with an invisible disability, but each day and in each new experience, parents are learning what types of activities evoke unwanted behaviors. They learn which times of day their children work best for tests or therapies. They learn which types of adult personalities don't mix well with their child's own. In doing so, parents become the voice their child needs to navigate the world most successfully. Parents learn to have those conversations with people who interact with their child, explaining why a certain appointment time will be futile, why they can't come to a party in a crowded bounce-house location, or asking for the lights to be lowered in a setting where their child needs to focus.
Parents also learn to be proactive in their child's environment. They may have to ask for specific details of a ride at an amusement park or ask guest services for accommodations in helping their child wait in very long lines. They might inquire ahead of time about programs at a museum for people who experience sensory issues.
Parents become the mediator between their child and those in their environment as well. Some children with invisible disabilities are nonverbal or have limited verbal skills, but parents can interpret their child's needs or wishes. They learn to navigate the world acting as a type of translator many times, allowing their child to make independent efforts (and encouraging those) and then following up with clarification, as needed.
They also have to mediate relationships between their child and their child's peers at times, providing child-friendly explanations about why their child reacted a certain way or didn't answer a question or seems not to follow the rules of a particular game. The way this information is conveyed is often key in helping other children understand ways that they can better form relationships with their peers who have invisible disabilities.
In absence of parents, teachers serve many of these same roles. In the school environment, teachers are proactively serving as the mediator between the child and their peers, and the child and other teachers or professionals. They help those who interact with the child understand what is to be expected and to provide structure for assisting the child in communication, transitions, and other areas of difficulties. Based on the child's past experiences and parents's input, they determine any difficulties a child might have in a school day. Will the assembly be too loud? Is 90 minutes too long to sit for a lesson without some time to decompress? Is the lunch room overly stimulating? Always on the lookout for new situations that could be problematic between a child and his environment, the teacher serves as an advocate to help facilitate the best possible learning environment.
Many of these things would be implicit in working with children with a visible disability. For example, if an adult saw a child approaching an escalator alone with a cast and crutches, she would rush to help. However, if a child with an invisible disability encompassing balance difficulties approached the same escalator, it is quite possible that no one would notice. These children, therefore, rely on the adults who know them best to intervene in the world around them to keep them safe and to provide a nurturing environment.
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