Thursday, December 13, 2007

i didn't sign up for this

i’ll warn readers that this is an especially honest and personal entry. and it’s about my brother. i don’t generally talk about him in this kind of detail with anyone, but i am starting to think i should more. dealing with the challenges of this kind of relationship should be talked about more and i guess this is my attempt at doing so. and even more than that, i guess i’m acknowledging that i am diary-ing up my blog, which is what i said i wasn’t going to do. but this thing has never had a consistent theme or motif to it, so why start now?


my younger brother has a significant, yet borderline cognitive disability. the state of arkansas has assessed him as a level two of three on their scale of mental disadvantage and his last IQ test scored him in the low 70s. he can move about the world with very few people ever knowing the extent of his handicap, and most of which would assume he was of average intelligence. it works to his advantage, because he doesn’t suffer the consequences of prejudice, but it also works against him when his personal relationships grow beyond acquaintance. by masking much of it through silence, he manages to get people to entrust more than they would normally, which ultimately leads to more disappointment than is deserved to him.

on top of this, he also deals with a hefty amount of psychological hindrances (quick temper, debilitating shyness, habitual lying), which have come on in part from growing up in an especially long (11 years) and painful parental divorce. the rest of it probably comes from the fact that he’s smart enough to know how shorted he’s been in life. i imagine that most anyone facing as much unmasked disappointment and chastising as he has, would want to lie every once in a while to catch a break. but he’s also not a very skilled liar, which means it almost always backfires on him and he pays twice for every one mistake. his gift of intellectual facade also robs him of the help he really needs, as most organizations and government agencies do very cursory assessments and they fail to provide him with the correct help. being borderline also means that someone else is always more worse off and more worthy of the slim resources available. had he grown up with a severe disability, i hate to say it, life may have been easier for him.

and even worse to say, it may have been easier for us. he’s always had a hard time staying out of trouble. he has made threats against everyone’s lives at one time or another, had a warrant out for his arrest for an ignored traffic ticket, over drafted a couple of bank accounts beyond his ability to fix it, destroyed and stolen property (usually belonging to those taking care of him), been kicked out of every residence he’s entered because he simply does not respect personal space and/or property, and has been fired in less than a few months of every job he’s ever had. however, he’s also made a lot of progress lately, and i’m hopeful. he moved out to arkansas to make it easier on me to watch over him and i’ve since helped him get into a trade school for people with disabilities. thankfully, it’s completely paid for by the state (including room and board), because i’d never be able to afford it. he’s doing well, for the most part, learning how to do minor repairs on cars. when he leaves the school, he’ll have his driver’s license, his GED, and a reasonable paying job.

look back fifteen years and you’d see that he grew up doing everything years behind expectation, walking at age two, reading at age seven, etc. it became apparent to my parents early on that their child had some challenges before him. and being five years older, i suppose i could see it early on as well. and because i’ve always felt very protective of him, i’ve long been his champion. but it hasn’t occurred to me until the last few years that i will grow to be his only champion. my mom is emotionally unstable and only recently has become to admit that she can’t handle his affairs. she shuts down at the thought of caring for him. my dad would never admit it, but it’s too much for him as well, but in another way. he simply fogs up with frustration, often pushing my brother to his limit and the result is rarely positive. there’s also the even more depressing thought that my parents will not be around forever. my dad (who is the most helpful) is older than most fathers of 20-somethings.

i’m not writing this to fish for comments on my role in this. i’m writing it to talk about the reality that hits you when you know someone else is beholden to you. in varying degrees and in different ways, new parents reach this realization and so do children of parents who become older and incapacitated. it's so frustrating and overwhelming at times. and if you're not careful, bitterness swoops in fast, making you forget the reasons behind your role. in the last few years, i’ve really realized how much i love my brother, more than i can explain, even in an entry that has become as long as this. but it’s going to take all of that and then some.

1 comment:

Carabear said...

I cannot and won't comment on what you should/shouldn't do, your role, etc. All I know is what I've seen in my job. It's unfortunate that there aren't more resources. I hear parents of kids with Autism complain of that all the time. There are kids I work with who get to me more than others- one who is somewhat but not similar to your brother- compounded issues of low IQ, mental illness, past abuse, and family break-up (his parents left him and his uncle ended up taking care of him), police intervention (making threats to people with baseball bats). My brother says of his son, who is almost 4 now, that it's really hard because Liam has a lot things going on, but nothing so severe to qualify him for great services. But all the little (big) things add up to make it really difficult. A lot of parents and family members with so much responsibility for someone with such high and constant needs, end up giving up on their own dreams, sacrificing much of their time, energy, resources to take care of someone else. There aren't many, if any, other options. Each family I see is so different: one or both parents bail, leaving extended family to take care for the person; marriages break up, and just like with some marriage, the child with the disability gets used as a pawn; some parents are fabulous and become the greatest advocates for their child; there's a lot of abuse with this population of people; some caregivers have just as many problems of their own. It's so dynamic. Any one person or one family unit is only capable of so much. If the needs outweight the resources, the gap can grow so huge between the two. For me, the hardest thing for me to deal with, with this or anything else, is not when people simply can't. Because there are always limits to what one person can do. But when people don't try, or they deny it, pretend, look the other way. Everyone needs a break to reenergize, and sometimes the smartest and best thing to do is to walk away, but not forever. I know of two mothers who started their own agencies, all on their own, because they saw a need for their child that wasn't available. People can do great things when faced with adversity.