
My daughter is not like other children.
She is 13 years old, yet developmentally, she is more like a young child or an older infant. She does not talk nor is she toilet-trained (she wears diapers that are adult sized). She can walk, but she does not talk or interact very well with others, including us. It is extremely frustrating.
We have taken Joy-Linn Patrice to one doctor to the next, in the hopes of searching for answers, but none have really given us an outright diagnosis of what is exactly wrong with her. They basically say that Joy-Linn has an "autism spectrum disorder", meaning that she has the signs of autism, but not all of them".
It is very discouraging.
Joy-Linn, in addition to not talking, interacting with other people, or going to the toilet on her own, also eats certain things (mac and cheese is her favorite, as are cold breakfast cereals, especially Malto Meal Sugar Puffs) and will not drink out of a regular cup. She prefers to drink out of her Sippy-Cup. She sits in front of the television set for hours, rocking, and sucking her thumb. If we try to get her to do something else, Joy-Linn will scream, pinch, hit, or try to bite you or whomever is dealing with her for the day.
Then people wonder why I can't get decent help when I am doing errands. Joy-Linn and her complex needs frighten them; they don't want to deal with a child like her. Then I am forced to stay home with her when she isn't at her school. (Joy-Linn attends a special school for children with autism and other special needs.)
Joy-Linn is our only child. Our hearts were crushed when doctors told us that she was not like other children, but we didn't need a doctor to tell us that: we knew it all along, especially when we could plainly see that she wasn't on target with other children her age.
Now that she is thirteen, we are thinking more and more about her future: that is, what will happen to her when we die (God forbid), or most importantly, where she will go, as Joy-Linn needs constant supervision. Joy-Linn has no fear it seems, and is always tending to wander off. We are scared that she will end up getting kidnaped or even harmed; we don't think we could ever live with that kind of guilt, so we have to have an eagle eye upon her at all times, especially now that she isn't in school until September.
We don't know what's going to happen in the future, but one thing is crystal-clear: we need to get somebody who can help out, at least for a few hours a day, until school resumes! One person (namely me) can't do it all by herself; I have to have a break from my special daughter sometime!