Tuesday, January 26, 2010

Our "normal" . . .

In the comments of the last post, Miz Kizzle asked "Is it difficult keeping Dustin away from your other kids? How does he react to being separated from them? Do the other kids mind or do they prefer not to be around him? I'm curious because it's hard for me to imagine keeping my three apart from each other and we live in a pretty large house"

I love Miz Kizzle because she always asks questions when she is trying to envision something and can always make me think!

Dustin is not only on in-line supervision, but he is on a 3 foot "leash". Put down your phones! Do not call CPS! He is not actually on a leash! He is only allowed near an adult and cannot be more than 3 feet from us at any time.

Why? Dustin is a danger to himself, our possessions and others. His lack of any impulse control is difficult to manage. He is in need of an external brain to control his impulses because he is totally unable to do so on his own. That is the reason he has a 1:1 paraprofessional at school. He also struggles with very poor cause and effect correlation. He cannot fathom that his actions can cause negative consequences and is unable to predict what will happen. Because he struggles with object permanence, he is also very likely to "steal" food and gorge himself, and because he has lessened pain receptors, he has no concept of feeling full. Ever. He also tends to pick at the plaster walls and make HUGE holes (like ones I can drive a truck through) and pull carpet strings that end up unraveling whole sections of carpet. The last reason is that due to his schizophrenia, he tends to do better if he is constantly around people so that his "friends" (his hallucinations) aren't needed to keep him company. He is simply not safe unsupervised.

Our home is a 100+ years old. The downstairs is three rooms separated by large arches so they are pretty open and then a regular doorway leading into the kitchen. The first room is the living room which includes "my chair" and my laptop. The second is what we call "the kid area" that has a couch, a loveseat, a tv, and the game system. It is where the littles spend most of their time. The third is the dining room which also has Robert's computer and music equipment. Dustin is either in a chair next to mine or at the dining room table next to Robert. At my chair, he can either watch TV with me, or can see the kid's tv. When he is with Robert he can play his DS game, color, draw etc. If I am in the kitchen he is always with me. He is very helpful in the kitchen and we also have a tv in there. (We are a tv family, don't judge!)

The other kids are getting more used to playing upstairs in their own rooms. This is a new occurrence. Since we have needed to be able to see the kids at all times, they really didn't play alone in their rooms much. Because of this, they actually had a pretty healthy fear of being alone and of the upstairs of the house. This was totally our fault for trying to keep constant tabs on them. I have worked hard to improve their playing habits. This has really improved over the last few months and I am loving the distance between them and Dustin as they can play happily in each other's rooms and even alone in their own! When they are upstairs I have ventured out to letting Dustin watch tv on the "kid couch" about 25 feet from me. Progress!

The other things I have ventured to doing is sending him on "errands". He can take the laundry to the laundry room, take clean laundry upstairs, or take the trash out . . . alone. I know this sounds crazy! My life is not normal!! He is only able to do this when the littles are NOT in the path of the errand. If they are it inevitably ends up in screaming, tattling, hitting and/or tears. (sometimes mine) I am SO not joking! Life is never boring around here.

This is so much a part of our normal routine that I am not even sure what real normal looks like anymore. We make it work for us.

7 comments:

Tudu said...

I have been there. We have had kids on line of sight and a leash. Our AT suggested we use an actual string to keep her near since she had a bad habit of sneaking away if I turned around. Now that most of my kids are on the right cocktails, we aren't having to deal with the screaming and freaking out if they run into each other. I am so glad we are at a point, this week, to allow unsupervised time away from me. I don't have any that need me in their space. It is such a good feeling and one I never expected to get to with as many kids I have with as many problems as they have.

Linda B said...

This was Andrew a few years back. How do you get Dustin to stay by you since he is so impulsive? This would have been a problem for Andrew. Is he angry at all for having to stay by one of you all the time? I've always wondered about this with families that can get this to work. How do you handle outings? Or is that out of the question-as a family. I cannot take Bug and Andrew out without someone helping. He runs and she drags. Thanks for sharing!Oh, you might have answered this one already and I missed it. Do your kids need daycare at all or did you and hubby work out the hours so he is there when the kids get home-

Sheri said...

HOw do I get Dustin to stay near me? I make sure I position my self between him and the escape path. The chair he sits in is kind of "blocked in". Not really hard to get to or out of, but there is stuff in the way so that I can get him before he "runs". This is not an issue much anymore because it has been happening for such a long time. Sigh.

He sometimes gets irritated, but he knows if the kids are home he has to be by one of us. If the kids are at school or daycare his leash is slightly longer. He does still try to sneak away and I have to reel him back in. Some of the time if I keep him engaged he is content to sit with us. I have being constantly vigilant!!! Makes me tired.

Which brings me to daycare. The littles are at daycare daily. Thankfully I work at a daycare and have for 20 years. They attend for free. This gives Dustin some one on one time and a slight bit of freedom from them. Robert does not work out of the home. Occasionally on breaks, one child will stay home with Robert. Harrison does well with Dustin, McCartney . . . not so much.

Sheri said...

Tudu, we have been told to use a string too. It really pisses him off! LOL We don't use it anymore.

Miz Kizzle said...

Thank you! It sounds like you've got a good system worked out.
I have three kids, a girl, 14, and two boys, 19 and 21. The boys are in college and the girl is a freshman in high school. They have the usual sibling quarrels but for the most part, they get along very well. I tried to imagine keeping them separated from each other when they were younger and it made me exhausted just thinking about it. The younger boy bit his brother in the stomach once during a tussle but that's the only time any of them caused any harm to the others.
Believe me, I realize how lucky I am!
I'm curious about Dustin's "friends." Has he described them to you? Do they look like people, or what?
As you can tell, I'm fascinated how you've been able to cope with Dustin's challenges while keeping your other children safe.

Sheri said...

Sometimes he describes them as people, other times they are dogs. He has a "wife" who is a dog, and they have 99 puppies.

He does have one that lives in his stomach who tells him what to do. Haven't heard from that one in years. "HE" told him to stab another student with a pencil. And he tells him to hurt me.

Then there are those that come from the ceiling where it meets the wall. Those are the ones that scare him. I hate those. Normally those only happen when meds are out of whack and then we head to the hospital. You can always tell they are back when he looks at the ceiling and cringes.

FAScinated said...

Sadly, this sounds normal to me. Ben is able to be on a longer "leash" right now but Anna needs someone at her side at all times. This morning she hit Ben in the head really hard. I was amazed that Ben didn't hit her back. He just hid under his blanket and cried. I know how he feels.