Saturday, April 25, 2009

We got the call!!!!

What a wacky week we've had!! I'm going to back up to Wednesday. I was able to get Boo a last minute appt. with Dr. S (UCLA).
Since coming off of the Risperdal, Boo's behaviors have once again intensified. He has an extremely short fuse and needs things to be just so. Ex: Bo took a glance at Boo's chocolate milk and Boo wound up throwing the chocolate milk across the room, screaming at Bo and spending the next hour FREAKING OUT that Bo actually "ruined" his chocolate milk by looking at it. (*Autistic behavior)

So our appt. was at 5pm. I was told there would be a wait (no surprise and a small price to pay to see Dr. S.)
As usual, I was able to strike up some conversations with some parents in the waiting room. Boo tends to communicate really well with other Autistic children so the first hour or so of our waiting went by relatively smooth.

It was about 7pm when things started to go downhill real quick. See, I was in such a rush to get out the door, that I didn't bring Boo's medication. I was now dealing with a tired, hungry, sans medication child :( First came the hyperactivity. Boo decided that the two people left in the waiting room were worthy of seeing him in full force. He started making VERY loud animal noises. He then moved on to running laps in the waiting room. (This was not too big of a deal because the waiting room is large and he wasn't near the two remaining people). I was trying to reign him in...I pulled everything out of my purse that he could pull apart, draw on, chew, etc. He was no longer interested. He then decided that screaming at the very top of his lungs sounded really cool! I told him he needed to be quieter and we could sing a song and ......he got angry.....he punched me. He kicked me. He bit me. Reverse, Repeat x 1000.

I then decided we should take a potty break. (He had calmed down enough to comply). Anyone who knows me knows I'm a germaphobe. If there is one place I detest it's a public restroom. I have a whole protocol for using a public restroom. No touching ANYTHING. Well, my sweet little boy decided to lock the stall door on me before I could stop it from shutting. He then pulled his pants all the way off, laid them ON THE GROUND, then took his SHOES OFF. I was scrambling to find my keys in the bottom of my purse so I could unlock the stall door from the outside. I was ready, by this time, to just grab him and run out the door and head home. This was around 8:30pm.

We headed back into the waiting room and I was able to strike up a conversation with the one lady that was left. She was very kind and understanding. She was telling me a little about her son who was in college. It's a long story and perhaps worthy of a separate post, but suffice it to say, he is legally blind and has Aspbergers. She went through a very difficult time getting his diagnosis because no one recognized his disorder. She too was grateful for Dr. S. Because of him, her son is doing very well on a full scholarship to USC :)

So guess what time we saw Dr. S? 10pm! Yes, 10 stinkin o clock! Dr. S apologized but honestly he has nothing to apologize for. He is a caring Dr. who takes his time with his patients. His 15 minute appts wind up being an hour! He is very thorough.

We wound up just talking in the waiting room because it was where Boo was most comfortable. While we were talking, Boo had managed to take ALL of the cushions off of ALL the couches in the waiting room. He piled them up and was body slamming them. He honestly looked like I hit the fast forward button on him. He did not stop jumping, running, body slamming me, shouting, screaming, cackling, howling, etc the entire time we were talking.

We left there a few minutes before 11pm. We are increasing his current medication but if in two weeks, we don't see an improvement, it's on to a new medication.

But....here's the exciting news....I got a call from the head of the ECPHP (program we've been on a waiting list for). It looks like he will be starting up sometime next month (barring any insurance nonsense). I'm happy. I'm not ecstatic like I thought I would be. Yes this program is like the BEST program around for children with Autism and/or severe behavioral challenges BUT...I am starting to wonder if it will work for a child with Autism AND FASD. I've emailed a Dr. in the FAS research dept. at UCLA. I'm praying she has a moment to return my email. The ECPHP is a HUGE committment. It will mean lots of sacrifice on the whole family. This I'm ready for. I'm just not ready or able to pour my heart and soul into something that isn't going to work. Of course, we never know "what" will work when we're dealing with a complex child, do we? So, I pray. I pray that God will lead us (not just me) in the right direction. I pray that if this is the right place for Boo, that it will all come together (financially, logistically, etc).

Well, I guess that's enough for now. Please keep Boo in your prayers...and also please visit the newest addition to my blogroll "Pablog". This is a special little guy who is fighting the biggest beast of all....(cancer). His story is incredible and his family needs MASSIVE amounts of prayer and support. Again, thanks for reading and blessings to all!

1 comment:

Cheri said...

Oh Judy, I am so glad he got in! Wow, what an ordeal at the dr.'s office....I can't believe how long you waited...but worth the wait I am sure. Keeping you all in my prayers.