We got bumped to the top of the waiting list!!!!!

I called up to check on Boo's status today and found out that because of his extreme challenges, he was put on the top of the list. He's next in line for a spot! This is truly a miracle for us! There is still no guarantee of how long we'll have to wait but at least we know he's next.
The person who runs the program told me that Dr. S really stressed the importance of Boo getting into this program. I am so grateful for our Dr. He is truly amazing!

Now onto the not so good news....Boo had his appt with Dr. S last week. It seems that he may be suffering a side effect from one of his meds so we need to run some bloodwork and make sure it's not affecting his endocrine system. If the test comes back positive, we will have to stop the Risperdal immediately. This could bring on some more intense behavior.
In the meantime, we cannot try any other medication so we're in a bit of a holding pattern.

This particular appt. also gave Dr. S more insight into Boo. He spent over an hour with us and much of that time was playing or talking to Boo. He reassured me that much of Boo's behaviors are from his Autism. Unfortunately, there are other behaviors that could be the beginning signs of something even more serious.

There are days when Boo's behavior is so out of control that I seriously contemplate him needing hospitalization and then there are days like today that are challenging but overall not too bad.

Overall, I have faith that God will light a path for us. I pray that Boo can get into this program soon and that the logistics of how it will all work will fall into place.

"Faith is being sure if what we hope for and certain of what we do not see."~Hebrews 11:1

UCLA appt today!!

We go see Dr. S. at 4pm today....which means I'll be home around 10pm tonight. I love Dr. S and wouldn't trade him for the world, but man, I hate these visits!
I am going by myself with Boo this time so Rich can stay home with the other kids. It's gonna be a loonnnnggggg afternoon!
I am trying to get my notes ready so I can go prepared. Wish us luck!

We finally heard back from Dr. S

We had been playing phone tag with Dr. S for the last couple of weeks. I finally got to have quite a long conversation with him the other night. (I just have to add that he is truly an exceptional Dr. He spoke with me for 35 minutes on the phone about Boo).

We are cutting back on one of his meds to see if that will decrease his paranoia. We also have an appt to go see Dr. S next week at which point we'll discuss where we go from here.

He feels that Boo could be showing the beginning signs of bipolar disorder (this is not a shock as we've discussed the possibility in the past) or even possibly schizophrenia. The last possibility is that because Boo has so many different challenges, he may not respond to medication in the same way *most* people with autism, adhd, gad, fae or bipolar may respond.

When we first discussed the use of medication, I was told it was a matter of finding the *right* medication. Some kids do great on one med, while others may not respond at all. Usually after trying a few, you find the right one and start seeing an improvement in behavior/symptoms.
So far, after 4 different meds we have seen no improvement and in fact, we've seen symptoms worsen. Dr. S is trying to figure out if the symptoms that have increased are due to the medication and if so, was the medication working on one symptom while worsening another. Or , is the medication doing nothing but Boo's symptoms are intensifying despite the meds.
For example, when we tried Ritalin, we saw an increase in his anger and rigidity. I thought it was because the medication was NOT working when in fact it was the opposite. The Ritalin gave him the ability to focus more but in giving him that ability it gave way to "hyperfocusing" and more of an Obsessive Compulsive behavior. So while it helps one symptom, it can worsen another.

Despite the unsuccessful attempts with medication, I am hopeful that the right treatment is out there. For me, half the battle was getting a Dr. to hear what I had to say and see with his own eyes what we see day in and day out with Boo. We finally have someone who sees the severity of the situation and is committed to helping us and for that, I am truly grateful.

SCREAMS ...

I was reading one of my favorite websites (FAS resources) and found this bit of info. I thought I would share because it's simple bullet points that seem to really lay out solid tips for parents of FAS kids.

Structure with daily routine, with simple concrete rules Cues (again and again and again), can be verbal, audio, visual, whatever works Role models (family & TV), show them the proper way to act, children mimic us Environment with low sensory stimulation (small classroooms, not too much clutter) Attitude of others, understanding that behavior is neurological, not willful misconduct Medications, vitamin supplements and healthy diet are quite helpful Supervision - 24/7 (lack of impulse control and poor judgment at all ages)

This was written by Teresa Kellerman, a mother and advocate of people living with FAS/FAE.
Here is a link to the full article: http://www.come-over.to/FAS/ScreamsArticle.htm

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......