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I need help.

post #1 of 5
Thread Starter 
I have a 3 year old son whom I am struggling with behaviorally. He has Mitochondrial Disease, Epilepsy, Autism, Sensory processing disorder, global developmental delay, he is non-verbal and other health issues.

Up until the last month or so it has not been that bad but recently his behavior has gotten to the point where I'm ready to pull my hair out!

A few examples of recent behavior:

He'll walk up to the curtains and pull on them. They can easily pull off the rod so I tell him not to pull on them and move him away. He runs back and pulls on them again. I pick him up and move him again. Sometimes I will distract him with something else, other times I get frustrated with his behavior and raise my voice and tell him he needs to stop. I don't know why I do this, it doesn't work. @@

I will bring him to me to get dressed. He will go limp. I pick him up and start to put his shirt on and he goes limp again. I pick him up again. This is CONTINUAL. He has low muscle tone and is nearly impossible to pick up from the floor once this starts because he just hangs off my arm. So then I might lay him down and he'll whip his body back and forth to do what he can to get away. Other times he's fully compliant and it is not a sensory issue in terms of putting clothes on, I can tell it's a "this is a fun game" issue.

He tends to think all of this is very funny. He thinks we're playing a game or that I must think it's funny. He understands but yet he doesn't. He does things more for my attention. I do not think he realizes cause and effect. I think sometimes he knows he should stop the behavior but cannot.

He has issues with energy and fatigue which actually manifest themselves as hyperactivity some of the time. I will fold laundry and walk away to put something away and come back and he's thrown all the laundry all over the room. I walk over to him and tell him to stop and he goes limp, reaching behind him to try to get more laundry to throw. It just never ends.

There are many issues at play here. There's neurological dysfunction which causes developmental delays. There's autism which prevents him from correctly understanding my facial expressions/tone of voice some of the time. There's 3 seizure medications affecting his brain and who knows what else is going on in his little brain. There's the fact that he cannot communicate his needs.

The hardest thing is that some days he is not like this at all and some days he is. The problem is that these days where he is this way are getting more and more frequent. There's nothing he really enjoys to keep him destracted other than playing with trucks and even that doesn't last long. He does not like to color, will not watch tv, does not enjoy any fine motor activities, etc...

I just don't know where to turn. Behavioral problems are huge in both Epilepsy and Autism. I feel like I'm at a loss as to how to really discipline him or even react to his behavior because it's so hard to know how his brain works.
post #2 of 5
Whew, that's a lot. You must be whipped. I guess that's the place I'd start. Try to take care of yourself and get breaks because this is going to take more energy than anyone one person has.

My first suggestion is to do what you can to simplify your life and not worry about teaching him something for the long term. Lower standards whenever possible. If there is something that will make your life easier do it. Could you take down the curtains for a bit? Put the laundry up? etc. Try to assume if he can reach it he'll mess it up if he can. It is a positive thing that he's trying to play games with you. What you are describing when laughing as you get upset is very typical behavior for a kid who is younger so it sounds like with developmental delays this is to be expected.

It may help to kind of gloss over when he gets into the game destructive game mode. Just remove your energy so he isn't getting a reaction. And, then quickly redirect in a happy direction. I know it is hard but I'm wondering how much routine or rhythm you have to the day. Predictability can help a lot.
post #3 of 5
I agree with Roar.

You might have tried these things already, but it might help to find something that works as a distraction while getting him dressed, and only when he's getting dressed. Maybe a lava lamp, or a disco globe thing over the bed that you can turn on, or something to hold, or a CD player with a special CD that he likes.

I replaced all the curtain rods with velcro curtains (had to make them myself but it was pretty easy, and they look okay). The kids had fun pulling them down and rolling themselves up in them, but that was alright - it was easy to put them back up.

But the most important thing is finding time to recharge and take care of yourself. Will he be attending developmental preschool? Maybe that is an option to allow you some time to yourself.
post #4 of 5
Thread Starter 
Thank you both! He does attend special ed. 2 days a week for 2 hours.

He was hospitalized all day yesterday for fluids so I think I'm just exhausted today. Or more so than usual!

I am going to try to have a bit more routine to his day and might put our baby gates back up to keep the area he's in a bit more contained. That way I can at least keep a better eye on him!
post #5 of 5
Just one more little thing you are probably already doing but as a reminder...

Tell him you want him to do. So instead of "no, don't pull the curtains" try "hands on your head" (or whatever). If you say "no don't pull the curtains" it may well be all he's hearing from that sentence is "pull" and "curtains". So, anytime you phrase it positively telling what you want him to do that will help him. It may not change anything in the short term but it might help in the long term.

I hope you can get breaks in the evening or on the weekend sometime too!
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