Originally Posted by Ping
Can someone explain "normal" to me. What makes one normal and what makes one abnormal?
And as the mother of a disabled child I can say things are hard for us no matter what we decide to do. Having a child with any disability is like walk down a dark tunnel not knowing where you are going or what you are supposed to do. If we decide on a particular treatment we get reamed from one side for doing it. If we decide not to do a treatment we get reamed from the other side. Walk a mile in someone else's shoes before casting judgment on someone else for the medical decisions they may make, whether you agree with them or not.
Ping, thanks the comment you made about what constitutes "normal" and "abnormal"...I find myself asking myself this same question every day of my life!
I'm a special education teacher, and I happen to teach in a special school for children with severe and profound disabilities. For our students at my school, they are truly attending school in the least restrictive environment possible...accommodations and program modifications are simply not possible within their regular neighborhood programs, even when self-contained special education classrooms are available. In other words, we have the type of curriculum available, methods, materials, equipment, and instructional support at this school that would be unavailable to the children if they were to attend special education in a regular school.
While I actually do support the family's decisions for Ashley, I do think there are a few things I'd like to throw in, seeing as these children (and I've had more than a few "pillow angels" in my day, and I view them as far more functional, capable individuals than this statement allots) are my love and life's work. I truly believe Ashley's family are working with her best interests at heart, and that they are doing everything in their power to improve the quality of her life...as parents of this child, it is their decision to make.
However, in my profession (which has it's fair share of ethical decisions as well), I choose to operate under something called the "Theory of Least Assumptions." What this is, is an attitude for professionals working with children like Ashley. We assume nothing about the child we can't prove to be 100% truth. And let me say that there is no full-proof way to determine what her mental age actually is, her cognitive ability, her level of reasoning skills, and how much she truly processes throughout her day...there are literally no reliable or valid assessments psychologically or educationally to determine these factors. For all anyone knows, Ashley could be a fully functioning 9-year-old living completely in her own head, with a body unable to follow through with normal 9-year-old activities. I have seen many instances where children with severe and multiple physical disabilities acquire "learned helplessness", and resort to infantile behavior, simply because their physical challenges make it easier to elicit sympathy from adults, and adults tend to make things easier on themselves by doing things for children that they could be doing for themselves...the parents (who do truly know Ashley the best), kept stating that she was functioning in the 3 month-old range of cognitive ability...but really, know one can assume this is a fact. It just may be that no one has been able to truly reach what is REALLY happening inside of Ashley's head at this point...a common situation with children who have disabilities.
Also, I'd like to mention that I believe it ethical and appropriate for children with or without disabilities to have a broad array of life experiences...including the opportunity to grow up and experience puberty, and to opportunity to grow as adults. This is closer to what I perceive as a "normal" life experience for most of us, especially those of us who are not living with disabilities. I guess my only problem with the Ashley treatment, is that it was driven the assumption that it wouldn't matter to Ashley if she entered into adulthood or not...that just isn't a safe assumption in my book. I always treat my kids like they can hear and comprehend everything I say...because it would NOT be fair to them if for some reason I were talking to them like an infant (or talking about them in front of them to another person), and in their mind, they're saying, "But, lady...I know what you're saying!!! You don't have to talk to me like that!!! I may not move my head by myself, or move my arms, legs, hands, or feet, but I've been here all along, and I'm a kid like every one else in your class!!!!" And I would hate for Ashley to be yelling at her parents in her head, saying..."Mom and Dad...I can hear and understand what you're doing, and I DO WANT TO BE A GROWN-UP!!! I want to go to my highschool football games, and go to prom with my friends!!!!"
Ugh. I guess that's my only problem with any of this. It's one thing to want to hang on to your children and provide care for them (particularly if they are profoundly disabled), but it's another thing to let them go and experience life as it comes like the rest of us...do I realize that Ashley's experience will be different from most of ours? Sure!!! She has more challenges in 10 minutes than I've had in 10 years! But when we're talking about quality of life, this IS Ashley's life we're talking about here!!!
About group homes and people with disabilities. A lot of people have a lot of misconceptions about these facilities. Prior to teaching, I worked in several throughout my area. I've seen some that are dismal and poorly run, and there are others that truly provide individuals with the keys to independence, a social life, structure, safety, community integration, vocational opportunities, and lots of recreation and leisure activities! Now THAT is quality of life to many folks with disabilities...they're living on their own (or at least in a supervised place with roommates), they get to go out to eat, go to work (even if it is hand-over-hand assistance from a job coach), shop for their own clothes, help with making supper (and shopping for it!), interact with non-disabled peers, etc. And these opportunities certainly exist for individuals who function much like Ashley, and have severe physical disabilities, and profound cognitive challenges as well.
I don't know...now I'm rather torn. I still support Ashley's parents, and feel they are doing the best thing they can for their own situation. I have absolutely no business telling people what to do with their kids, unless it is clearly detrimental to the children. And they have nothing but Ashley's best interests at heart...and they obviously love her very much.
Just a few of my thoughts, I guess.