BEE BOO, BEE BOO, BEE BOO. The sounds of a feeding pump across the noisy house.
Allison and Payton Manning are two average 11 year olds. They whine when they are tired, they laugh at funny noises, they love all things Disney, especially Frozen. The only thing that separates them from their peers is a condition called Cerebral Palsy. Among other underlying conditions.
Having younger siblings with special needs can be extremely stressful with the knowledge that at any moment Ally could have a seizure or I could break Payton’s bones if I move her in the wrong way.
Cerebral palsy is a condition that affects less than 200,000 people annually and usually occurs in adolescents and people with developing brains. This condition also makes eating and drinking hard for Ally and impossible for Payton.
In order to get the nutrients they both need both of them have a special port on their abdomens that connects to their digestive system. This system is called a feeding tube, a long clear piece of surgical-grade plastic that runs through a pump that feeds a mixture of vitamins and supplements through it.
Ally and Payton are twins making their condition even more rare, with the condition effecting only one million people across America.
Ally has the ability to make basic conversation and crawl while Payton is dependent on my family and I to move her around. Payton is unable to communicate in any way other than crying and laughing.
Ironically, even though both girls are unable to cognitively function the same way as their peers, they were still required to take the Ohio State Tests.
Other than Ally and Payton I have one able-bodied sister, Addison Conrad. One way I bond with her is by taking her out shopping or to eat, however, if I ever want to take out Ally I have to constantly be on guard for seizure symptoms such as shaky eyes and body, tension of the muscles and lack of speech.
Yet even though life is a constant battle for both girls it is clear to anyone who meets them they are full of life. Payton cannot speak or communicate but she has a clear language of her own.
When she is tired or wants to be moved she cries in a high pitch but when she is truly in pain she cries loudly. When she is happy she laughs like an old jolly man, a deep guttural one that makes everyone around her smile.
Ally is the most loving person on the planet, she is always smiling and waving at others, and nothing stands in her way. Even though she is wheelchair bound Ally is a cheerleader for the Green Bulldogs and cheers at all home games.
Being the older sibling of a special needs sibling means constantly working on their well-being. Each time Payton coughs or Ally slightly tenses it causes me to worry.
Socially there are still large misconceptions and stereotypes about people with special needs. I see videos and comments on social media stating that people with special needs are not human or less than, that is far from the truth.
Ally and Payton are individuals even if they need a little help in life.
