Stacy of The Preemie Experiment raised an important topic when discussing her fear that her daughter wouldn’t live independently. I see this fear and uncertainty communicated on the PREEMIE-CHILD list all the time. Some people on this list have children with severe disabilities, like quadiplegic cerebral palsy or severe mental retardation, and these parents can be pretty sure that their child will always continue to need some assistance. That doesn’t mean they can’t live full lives, but independence is a very high value in this society and in disability communities in particular. So these parents will grieve, early on, that their child will always need some assistance. Some will decide to devote themselvees to seeking a cure for their child’s disability – I’ve not seen this prevail on the preemie list, but it’s pretty common in the autism community. Others will gradually adjust and learn to accept the “new child”. Many will do both – devote themselves to a cure while, as long as there isn’t any, working to accept their child.
But what Stacy highlights is different. This kind of fear comes with children whose disabilities cannot be seen readily. That doesn’t mean their disabilities are less severe, but it’s more difficult to tell. For example, it is pretty easy to recognize me as blind, but it apparently took twenty years to recognize me as being on the autistic spectrum.
The unfortunate reality of living with invisible disabilities, is that people constantly make assumptions that may compromise your ability to live as fully as possible. After all, disabilities that are invisible can pretty easily be minimized, or when a child is under a lot of stress and hence, experiencing the symptoms of his disability quite severely, people may assume he is more severely disabled than he would be if circumstances were better. Like I said yesterday, when you see me typing on the computer, you might conclude I’m very high-functioning. In fact, you can’t see I have problems recently labeled autistic at all. So you come to think I’m pretty intelligent and decide that, on this basis, I can live independently. Now imagine you’d see me when something is not going as I expected it to go and I am overloaded by the noise of fellow clients talking and the dishwasher washing and the radio blasting. Then chances are I will freak out quite majorly. So you’d see me freak out and decide I’m crazy and belong in a psychiatric hospital. Now imagine that you see me in both of these two states on the same day. Not possible? You bet.
So parents whose child is “on the fence” of independence have different experiences from those whose child’s level of independence is clear already at an early age. They are constantly faced by the dilemma of either expecting the child to be independent – which they may practically be – or acknowledging the child needs support – which they may need because they have mental health problems or developmental disabilities. And depending on circumstances, your child is going to land on one end of the fence or on the other, and you as a parent will have to adjust to their “realism” – to use my old term. When your child has reached adulthood and can live independently, you may be glad cause she reached this milestone, but you may continue to worry whether she’ll do alright. And when your child reaches adulthood and you realize she will still need support, you not only have to adjust emotionally to this state, but you’ll have to fight the system to get her the right support, too. You may grieve that your child did not conform to your expectations and is not going to lead a “full and productive life”. What is that, anyway?
When you have a child, you always have expectations of that child, and these expectations mature as your child does. When I was twelve, for example, my father expected me to study mathematics at university. Now he expects me to study either linguistics or philosophy, cause he knows that’s what I’ll have to decide between. When I was twelve, also, my father probably expected me to live fully independently. He may still expect that of me, but I already know I cannot conform to that expectation. Have I, therefore, crossed that invisible line of “bad outcomes”? I don’t think so, and, I hope, neither does my father. After all, there are different degrees of independence, and different degrees of support. Most people with severe mental retardation need full-time supervision. A person with quad CP may need help with basic self-care skills. Other people may need support only part of the day, or someone to come over to their house for guidance twice a week. Some people can do most of their cleaning alone, but cleaning their windows takes too much energy, so they let a housekeeper do that. The scenarios aren’t black or white – I don’t believe there is really such a “fence”, and if there is, where do I fit? -, but each requires adjustment from parents and (adult) children. Sometimes, this adjustment is gradual cause the parents realized that their child had problems at an early age, and sometimes, it needs to be made relatively suddenly – like in my own case. It’s about how we come to adjust to our own or our children’s “realism”. I can tell from my own experience, that this isn’t easy. I’m still in the process of adjusting to my own situation, and alternate between fear that living in Nijmegen will be too difficult cause I may not be able to get the support I need, and believing the whole freaking thing is stupid and I should be living completely on my own already. I don’t know what my parents think – Arda sent an E-mail explaining my situation to my mother, but she didn’t respond and hasn’t returned any of Arda’s other attempts at reaching her, either. To me, she pretends everything is still as it was. In one way, I think it is, in that the freaking label didn’t change me (and Arda’s E-mail dates from before I was labeled anyway), but I know sort of that my parents don’t accept my outcome. I hope they will, eventually.