Wednesday, April 29, 2009

Our normal . . .

I have had two comments from the last post asking how Dustin and the other kids feel about the changes we have had to make to keep Dustin safe. I started a comment and it got long, so I was going to edit the last post and it got even longer, so I decided I would address it as a post.

I know the readers who asked weren't thinking these changes were wrong, they just wanted to know how he felt, I will try to explain. I will use words that will probably piss people off, but you get me as I am. I really hope I don't bring on a slew of criticism with this answer, but here goes

The prime answer: He has no concept that it isn't "normal" for parents to do this.

Even though Dustin looks perfectly "typical" he is severely brain damaged due to prenatal alcohol exposure. Just last week the psychiatrist said to me (in his thick Indian accent) "I am 100% sure that Dustin has great damage to his frontal lobe. It simply does not work properly, and he has come a long way with what he can accomplish". It took my breath away being said like that. I have always understood that Dustin could accomplish more than the county DFS gave him credit or, but I think we may be pushing the limits as to what he can truly do and now is time to come to grips with that.

It is exceedingly difficult for people to meet Dustin and immediately understand he is "not right". He presents completely "normal" as a charming, if not childish, 14 year old. He is lanky, clutzy, sweet and communicates "normally". He is very kind and extremely helpful. He looks "regular". As a stranger you are GOLD to him because he loves meeting new people. He knows no stranger and you will immediately be his best friend.

Let's take a look at a normal conversation in the check out line at the grocery. . .

Dustin will not normally engage without being spoken to first. (took YEARS of reminders)

Cashier: Hi, did you find everything okay?
Me: Yes, thank you. (my snarky mouth thinking, "If I hadn't I would've asked you idiot")
Dustin: Can I pack the groceries.
Me: No thanks. (Oh dear Lord, I wouldn't have anything left looking normal, but thanks for starting in . . .)
Cashier: That's nice you wanted to help, most kids your age won't offer.
Dustin: I am a good helper, do you have any pets? I like potato chips.
Cashier: (a slight eyebrow raise) Oh really? How old are you?
Dustin: 12 . . . I mean 13 . . . Uh 14 . . . Right mom?
Me: Yes Dustin 14.
Cashier: What school do you go to?
Dustin: (Looks at me to answer and I do) He agrees shaking his head.
Cashier: Oh! That sounds fun. What is your favorite class?
Dustin: No, my mom planted stuff in the garden today. I am really good at Mario on the Gameboy.
Cashier: Oh, that's nice. (confused)
Dustin: Mom, when we get home can I have a snack since I was good at the grocery pleaaaassse? (with a little hopping and begging)

Then they kinda trail off not knowing how to continue the conversation. I know she is thinking, wow, she must really baby him, or something is really wrong with this boy. Usually we get a kind smile and silence for the rest of the transaction.

He is a 5 year old "trapped in the body of a game show hostess" . . . oh wait, that an obscure reference from the movie Say Anything. He is a 5 year old trapped in the body of a 14 year old. He may always be. I have accepted that from my end, but I will continue to push him to go farther and succeed more for him. The truth is, no one really knows how much he can advance, and why not give him every chance possible? Probable and possible are light years apart in some cases. . .

So, when he came to us he was like a 2 year old. He is now, 8 years later, like a 5 year old. We have come a long way. We are the only "normal" he will ever know. I struggle with things like television. He would enjoy Barney and Dora and Wonderpets all day. I was conflicted awhile ago with letting him watch what he wanted (baby shows) or getting him interested in a little bit more age appropriate shows like Drake and Josh or The Suite Life. We didn't tell him the "baby shows" were prohibited, but we told him it was time to switch the TV for the afternoon. Robert also introduced him to Brady Bunch and Leave it to Beaver and other shows from our childhood. He mostly is appropriate, still, he would choose Barney if it was on but we have stopped allowing him to watch those kinds of shows. It was time. Maybe it was selfish, but I couldn't let him any longer. He survived. It really wasn't even a fight.

So, the other kids? They have grown up with locks on the doors, door alarms, and constant supervision. At this point they don't know that this is odd. They will soon I suspect. But they know that their brothers "brain is broken" and that he requires different things than other children so I assume they will accept it well. The only thing that I think this has damaged is their ability to be alone. They are afraid to be upstairs without an adult. It is getting better as I force encourage them that is is okay, but it has been difficult. I was a very fearful child, so I am hoping it is more out of fear of being alone than the fact that I have ruined them. LOL

So, how does Dusin and the other kids feel about the changes? The rational, nice mommy answer is: Fine, they think it is normal. The bad mommy answer is: Who cares? It keeps him safe and me sane.

I'm not even sure I could raise a normal kid surrounded by normal at this point . . .

Opinions? Criticisms? Bring it on . . . I wanna hear it all.


Dia por Dia said...

Thank you for these last two posts. You home looks a lot like mine :-)My kids are younger than yours (oldest are 8 & 10) but they too see lots of the things we do as "normal." We have assigned "spots," for each kid, they have to ask to use the bathroom so I can track where everyone else is, when I talk on the phone they have places to sit and wait, we have alarms on doors, cabinets, etc. etc. It is normal to them and they don't question why we do all this. At this point it isn't any stranger than all the family traditions and silly things we do when we are having family fun times. Of course, explaining it to visitors....when we actually have visitors that another story.

Torina said...

So that stuff is not normal??? And all this time I thought we were a typical family... LOL

Eos said...

we get so used to "our" normal that it takes me a bit to catch on when I see real (for lack of a better word as "normal" is all relative anyway) normal around me. When I see "normal" interactions between moms and their daughters I think " that's how it's supposed to look" -

Just had a sexualized behavior incident here last night...years ago I would have been I'm all the facts together/organized, called all the right people, will explain to the therapist and we just move mom busted out crying and had all the worries that would apply to a "normal" reaction...and she was wondering how I could remain so calm...because it's NORMAL for US!LOL

BTW...if from here on end I type w/ all lower case or weirdly please forgive...holding baby in lap at same time

Accidental Mommy said...

I think the kids are quick to adapt. I know I'm the one in our family who hasn't gotten used to it all and all the micromanaging.

I worried about how my kids were going to take the alarms and locks. I thought they would hate them because it would put an end to all those behaviors that they like to use to drive us crazy and harm themselves.

But you know what? In my house, it brought a sense of being safe for all of them. i hadn't realized that *I* was actually feeling unsafe until that first night with the alarms on their doors. The videocameras have also given them a sense of safety because they are on better behavior now, knowing that I can always playback (and I have) the things they are trying to get past us on "tv".

We do what we have to do, right?

Carol said...

Thanks Sheri,

As you know, I was one of the people who asked the question. I asked it because, on the video, Dustin acted like it was "normal" (whatever normal is - I still haven't figured that out in my life).

What I saw in the video appeared to be Dustin accepting the bracelet as "normal" and, not knowing him, I wondered if that was truly the case.

I hope that my question wasn't taken as any type of criticism. I was just wondering. You and Robert have my deepest respect.

Sheri said...

Oh, I didn't take it poorly Carol! Sometimes I forget that everyone doesn't live like we do and are curious. No offense taken!

Jo said...

Sometimes when you write things, I feel like you are living my life. It is rather strange. Our one "blessing" is Little Man no longer looks or acts like a "normal" child and people spot immediately that something is amiss. I think it helps.