Thursday, October 29, 2009

What my life is like . . .

I thought I was write a post that is more for me to reference than anything else. I was overwhelmed with a few kind comments over on my facebook page both publicly and privately about my Marwage post. It actually opened my eyes to a few things.

1. I think that this blog and the vast majority of those in my google reader tend to keep me in a special needs bubble. What do I mean by that? Not that I don't love all my crazy moms of nutty kids, they help me beyond belief some days, but it does tend to keep me a little insulated. It helps me not feel so alone and it also helps me redefine normal for our family. But it also makes me forget that not everyone understands what we deal with on a daily, hourly, minute by minute basis. Some of the commenters made me remember that not everyone understands what it is like to live like this, and maybe I should do some more edu-ma-catin.

2. Even though we may try to explain that what "we" (families with significant special needs) go through daily, sometimes seeing it laid out in print makes the difference. I had a couple family members approach me after reading that blog entry and tell me they had no idea what I dealt with and understood it better. So, HURRAY for understanding.

I was invited to a really cool event this weekend. I would love to go. I felt awkward trying to explain to this kind person why it was impossible for us to attend. Sometimes I feel like just by explaining our circumstances it seems like I am looking for pity. I am not. I choose this life and I would do it again in a heartbeat. It is just simply not like most families. It does however make some people uncomfortable to hear about our issues.

Some of the blogs I read regularly keep their child's information private. I understand their reasons. I hope that the fact that I chose to share what I have does make me the "bad guy". I really think it is important for me and I think a reference point to look back at will be helpful in the future.

Here are things I commonly say, and what they mean for us on a daily basis. (I add some links to former entries until I got tired of reading so much info . . .)

"Dustin is a 4 year old in a 14 year old body." What does that mean? It means he would sit and watch Noggin all day. He chooses to play with blocks and baby dolls and tattle-tells constantly. He has difficulty with tasks such as hanging up clothing, brushing his teeth, and personal hygiene. He cannot separate good choices and bad choices. He is unable to see why holding a pillow over your sister's head is a horrible thing to do when she took your toy. He lashes out at people smaller than himself. He whines and cries constantly if he does not get his way. He cannot sit still or be quiet for any length of time. He rages. He pees on the floor, the shower, or the tub, or in cups, or . . . . you get the picture . . . when angry.

"He has organic brain damage from his mother drinking while pregnant." He has Fetal Alcohol Syndrome. He has no corpus collosum. He is unable to process cause and effect. Does not understand consequences. Cannot relate consequences with behavior. Typical behavior modification is useless. Has no impulse control. He perseverates (obsesses) on particular things over and over and over. He never developed object permanence - if you didn't see him do it he has no idea how you could possibly know he did it, likewise if he doesn't see you, all is fair game. He has lessened pain receptors - he cannot feel pain at normal levels. He is unable to feel full and is constantly hungry due to lessened pain receptors. He is klutzy. He is unable to ride a bike due to balance issues. He will choose flight when things get too tough. He must always be supervised or he may hurt himself or others by making a poor decision and doing something stupid. He sleeps in our bedroom so he doesn't burn down my house, walk out the front door, or hurt the other kids while we are sleeping.

"He is moderately mentally handicapped" He has an IQ under 51. He will likely never read although he can do many hundred functional words (self-help, grocery, street signs etc.) by sight. He will never live unsupervised or be able to handle his own finances. He will never drive a car. He should be able to get a job with supervision and job shadowing. He is able to use a calculator and add money. He can tell time and he can count money. Most of the time he cannot tell you how old he is, what school he goes to, or what grade he is in, but sometimes he surprises me. He can do chores and participates in a chore chart at home, when not linked with behavior he does well.

"Dustin has schizophrenia." Without the aid of very serious anti-psychotics, Dustin does not live in reality. He sees things that are not there. He lives in a different world with his wife who is a dog. "Things" come to get him from the ceiling. Demons come to drag him to hell. He cannot separate reality from fantasy. He can argue with you that his shirt is wet when it isn't and he truly believes it. His "friends" tell him what to do and sometimes tell him to hurt people. His stomach talks to him. Stories are told that involve real people and real circumstances that never really happened and could not have happened, but he believes them. Because of this he cannot be left alone. He must always be supervised or he may hurt himself or others. medication helps most of this, but sometimes things slip through. His "friends" frighten me the most.

"Dustin has a hidden disability." Dustin looks completely normal. If you pass us in the grocery store while he is throwing himself in the floor or running through the parking lot away from me you may just think he is horribly behaved. If you witness me making his salad for him at the salad bar like a toddler you may think I am over protective. If you overhear me threatening him to hold onto the cart and not let go because he refuses to stop touching everything is sight, you may think I an too harsh. He is charming. He is kind hearted and he is sweet. He looks typical!!

"Dustin suffers from Post Traumatic Stress Disorder." Dustin was seriously physically abused by his mother's boyfriends and other friends in the home. He had bones broken, was put in a dryer and had it turned on and had cigarettes put out on his back. Dustin was exposed to an older child who bit pieces of flesh off his body. Dustin was neglected and left alone. Dustin was also sexually abused by another foster child. He flinches if you come near him quickly. He has flashbacks where he remembers the abuse and if you with him at the time, your face gets put in the flashback. Dustin tells people that current people in his life hurt him. If someone asks Dustin if he is hurt by someone he will answer yes. He cannot separate future and present. He screams, "Don't hurt me!" If he is being reprimanded for something. We have had 3 CPS complaints on us because people do not understand this, heck I hardly understand it. He must always be supervised or he could perpetrate. He has hurt/killed animals before.

There it is in a nutshell . . . our life with Dustin. I'm tired just reading it.


Cindy said...

You and your hubby are an amazing couple to love on this child when the rest of society would run the other way. You show the heart of Jesus, the reality of humanity, and simply rock my world.
Thanks for sharing so much of the specifics so that we can understand, and therefore support you better.
Peace to you sistah...

Miz Kizzle said...

Ah, poor Dustin. He doesn't deserve the challenges he's been saddled with. The part about his unseen friends freaked me out. I have a BIL who is bipolar or possibly schizophrenic and he has shared some disturbing things in the past, such as how Bruce Springsteen writes private messages just for him in his song lyrics.
Fortunately, I don't live with my BIL. You and your husband are terrific to be so good to D.

FosterAbba said...

Do you foresee that there will come a time where you will have to seek out-of-home placement for Dustin?

What are your plans for him when he reaches adulthood?

zunzun said...

I'm tired FOR you!LOL The hardest part of all this is the fear that the outside world, not understanding, will cause us of the many reasons I tried to be careful (yes..I felt guilty about betraying her privacy but it wasn't because I was being all altruistic...the main reason was that it could REALLY bite us in the ass due to my husband's job) - took forever for my own parents (who are great) and my sister (who despite our issues is always there for me) and my in-laws (one who happens to be a friend since High School and people I've known since I was a teen) to fully understand what was going on and not try to justify it or excuse it away or ignore it....they all now get it because she's older and gives herself away (hard for them to excuse stealing when it happens to them!LOL) and this is FAMILY....close family at that...what hope had/have I for those who are not...those who only get a glimpse...a glimpse tempered by her sweet, friendly, charming outside demeanor....

Most would look at me like I sprouted a second I let things unravel as they will...continue loving and protecting and leaving the educating to braver souls (I'm really in awe of you and Corey and such who gives these letters a FACE) or at least until it would no longer threaten our livelihood.

You are awesome...sleep deprived and tired but awsome!LOL

Sheri said...

Abba, almost definitely. I cannot foresee him living with us long term after he is say 22 or so. I could be wrong.

He will most probably need either an institutional setting or a heavily supervised group home setting.

The psychiatrist cannot fathom that he is still in our home and not institutionalized now, so I am certain it will come to that. said...

Isn't it odd how your 'normal' can leave others in shock :) I was mentoring a new foster parent and had to take a step back from where I was to where I used to be 'before'. It was a REALLY big step. :D