It's official....we're on the waiting list!!!

Happy New Year to everyone! I pray that this coming year brings hope and peace to everyone!

I am hopeful today because we have been officially put on the waiting list for a special program up at UCLA for Boo! It is a partial hospitalization program. He would go 5 days a week for 8 hours a day! It is the only partial hospitalization program for little ones in this area.

The downside is that it is a huge commute every day, there is up to a two year waiting list and our insurance may not cover the whole thing. (insert prayer request here).

As I've mentioned before, Boo is extremely complicated. I keep getting asked "Well why not just put him back in that ED preschool program while you're waiting...if things are really that bad with Boo". The thing is, once again, an ED preschool program like the one he was in focuses on behavioral modification. The main focus is to change negative/aggressive behavior. While Boo definitely needs to change his behavior, he needs the right tools to learn how to do this and we need to be treating the underlying cause of these behaviors. Let me give an analogy. If you're in a boat and there's a leak, do you start bailing out the water or do you try to fix the root of the problem which is the hole in the boat? Do you fix the hole with a band aid or do you find something that will "work"?
This is the boat we're in. Unfortunately, there are many many holes in Boo's boat and everyone keeps trying to hand us band aids to fix them!

I refuse to give up on finding the right treatment for Boo. I am committed to bringing awareness to these complicated children. We may wait a long time for a spot in the program at UCLA but in the meantime, we continue to take it one day at a time. There are no magic quick fixes.
We have changed some meds around but haven't seen much of a difference. I also have finally finished The Explosive Child.

It was an excellent book and I am confident it will help us down the road. For now, we can only use bits and pieces of this book. Boo's ability to listen to my suggestions and think for himself are very limited.

My goal right now is to find a way to reduce his rages. The tiniest things set him off. A typical day for us looks like this:

12am - Boo wakes up, comes into bed with us and begins rocking back and forth hitting me and Rich with his elbow or head (unintentionally).

12:30am- Cries out in his sleep and inadvertently punches Rich.

1am- Snoring, grinding teeth, twitching, yelling.....

2am-6:30am- kicking, snoring, rocking, yelling, and sometimes wakes up because his pull up has leaked (fun times!)

6:30am- He's up! Goes into Bo's room and begins jumping on his bed asking Bo to help him play a video game. Bo says no, he needs to get ready for school. Boo screams at Bo and I jump up because I know something is going to get thrown.

7am-9am- We need to get kids ready for school and out the door. Boo wants something to eat but doesn't know what he wants. He throws himself down on the ground and begins an all out tantrum because I don't have time to make him pancakes right that second. He then screams and hits me. I tell him "no hitting" and wind up holding him, while trying to redirect him. (did I mention he has OCD?) He takes an interest in a toy and I say it's time to go. He sits staring at his toy. I tell him 10 more times it's time to leave. Kids are in the car. Boo is not budging. I tell him I'll have to carry him to the car and he screams no and runs out the door and down the sidewalk. He finally gets in the car and starts hitting his brother for no reason .........we get to school and he has to hear his brother and sister say goodbye to him at least two times or he FREAKS OUT.

9am-2pm Lots of screaming, demands, kicking, throwing, hitting etc. I must keep him engaged in an activity constantly or he becomes destructive. We try reading books and doing some "school" but his attention is very limited. We can't treat his ADHD with stimulants because it exasperbates his rage. He tries to tell me what he wants to do but has a hard time with articulation.

2pm-Rich gets home pick up the kids from school, play referree, keep Boo away from the kids so they can get their homework done and have downtime. Boo gets frustrated that he can't play a certain game or watch a certain show and melts down. Raging begins again (for the average of the 5th time that day).

5-9pm Raging, throwing, kicking, frustration...................................then sleep

9pm-12am- snoring, twitching, kicking yelling, crying in his sleep :(


Once again, I feel the need to reiterate that we have tried all the conventional parenting techniques that worked very well on our other three children. Boo's brain is damaged. It is not wired the way an average person's brain is wired.
The part of his brain that regulates his emotions, gives him reasoning skills and impulse control is just not developed. Plus, he has Autism and anxiety and possibly bipolar disorder. All the time outs in the world will not "teach" him to change his behavior.

I know I've repeated several things tonight in this post but I feel it necessary. People need to understand that my child is not a brat. He's not "getting his way". Believe me, if he had a choice, "his way", would include having a normal childhood and being able to feel happy the majority of the time instead of rage and anger. I would guess that "his way" would NOT include wanting to die because he's sick of feeling angry :( (**disclaimer....yes his psychiatrist is fully aware of these things).

Thanks again for reading this and please keep Boo in your prayers.....until next time......