Journey into the impact on the lives of people with special needs and the ones who love them.
The feeling of your children leaving, of facing the wide world alone, is something most parents have to face as soon as their baby can start to walk, talk and feed themselves on their own. However, there are quite a number of families across the globe that will never know that feeling. In fact, the sinking feeling of “what about when I die?” is much more common.
Children and adults with disabilities, from learning to physical, spread across the entire world; the severities of these different disabilities range from barely noticeable to extremely low functioning. For a very long time in school these children would be isolated, considered unteachable and a hassle to deal with. That most likely was the root of the problem, of course if they are considered this way they won’t learn. They have needs that other children don’t have, they need special attention but they do not need to be treated like they are contaminated with a disease and kept away from people. Interaction is not wanted, but needed. Some simply lack proper communication skills, or an understanding of the world around them.
Very recently there have been major breakthroughs in the teaching of children and adults with learning disorders, and genetic diseases. Life skills classes are available to these students starting in elementary school, and all the way through high school, in fact these students can stay in high school up until the age of 21. This class encompasses daily skills that most people don’t think twice about, such as showering, cooking, basic reading and writing, and many other things that may not come so easily to these students.
Recently they have also become more included in activities around the school.
“Because of inclusion, students with special needs are more accepted in the school environment. They are in classes with typically developing peers from such an early age that both the special needs and typically developing peers recognize faces and names of each other. They learn to cheer for their accomplishments together: football field, special Olympics field, homecoming, Majestic Court, etc. They laugh together, not AT one another,” Structured life skills teacher Cynthia Patterson said.
While this is amazing and very helpful, families and teachers can only wonder, what about after; What comes after they are forced to leave high school? Parents can only take care of their children for so long before they themselves start needing assistance in life.
Darrel Monroe and Clara Monroe, are the parents of Bethany, Caleb and I. Bethany has just recently turned twelve years old, and has been special needs since the time of her birth. However, up until recently, doctors and specialists had only vague ideas which genetic disorder(s) she had. “It was very frustrating… [but when we found out] we felt better. At least we had a diagnosis. Of course what Bethany has is a rare genetic disorder,” Clara Monroe said. Bethany has been diagnosed with MED13L, and twelve other disorders including clinical anxiety.
“I would hope that as siblings, you or Caleb would be able to take care of her. I think back to my Uncle Jimmy. My mom and her two half sisters took care of him. He stayed with each of them for periods of time throughout the years,” Darrel Monroe said.
“Our students are just like everyone else – they want friends and people to know their names. They want people to speak to them in the halls, sit with them at lunch, and invite them to do things with them. They are loving, giving and very forgiving!” Cynthia Patterson said.
So many times after the parents become to old, all hope for the child to have a proper support or even a hope for the future is lost. There, of course, are some organizations that can take in these children in their adult life, but these places aren’t extremely well known. Many times that isn’t the organizations fault, but a lack of funding in many ways. There should be government funding and support for families, and these groups that protect these children and adults.
Some families and parents worry about if their kids will visit them at least once a month, but there are so many families who will never know that feeling. In some ways they almost have a closer bond, because of the heavy reliance on each other. The feeling is strong that they wouldn’t trade their kid, brother, or sister for the world.