Heaven has one more angel.....

Pablo has left this world today. I didn't know him or his family and yet his story touched my life.
Blogs are like portals into other people's lives. I am forever changed by the people I've "met" through the blog-o-sphere.

There are so many children out there battling childhood cancer. It is a demon that takes hold of their little bodies. We all have our own battles. Tonight I ask that if you are reading this, that you take a moment to pray for not only Pablo's family but for ALL the parents and children out there who are either in the thick of the fight or just learning of their diagnosis.

Also, please visit Zoey's site (her button is on my blog). She is a little warrior who has just finished her last round of chemo. Her mother, Heather, is training for the Nike Women's Marathon. She will be running on behalf of Zoey and all the other little warriors who are fighting for their lives. Please consider sponsoring her if you are able. Once you click on Zoey's button, you will see Heather's fundraising link. God bless! Remember to hug you little ones tight tonight!

Pablo!

Just a quick update to ask you all to pray for peace and light for a mighty fighter, Pablo!
His link is in my blog roll....please visit his site. He is an amazing little guy who needs prayers of peace right now. He is going home to spend his final days with his brother and his mommy and daddy.

I am truly speechless right now. I don't personally know this family but have followed their blog for a while now. They are just an amazing family and Pablo has touched my life forever. Please pray.

Would you like some cheese with my whine?

I have purposely not posted for a while because I knew I would just whine and complain about how HARD the last few weeks have been. However, I figured I might as well just update (whine and all). This is what blogs are all about, right? (Sharing the good with the difficult).

My emotions are all over the map right now. We are trying to wrap up the school year, our oldest is graduating 8th grade next week, and then there is Boo's school! Can I just once again say that commuting every day stinks big time!!! People are rude, inconsiderate and way too aggressive on the freeways! While I'm at it, WHY can't they come up with some sort of plan to fix that blasted stretch between the 105 and the 10 (on the 405). It's ALWAYS a snail's pace!

How is the program going you ask? Well, let me tell you.....I don't know. There are moments that I just want to run screaming from that place and then other moments where I realize that I need to give it more time. I have to realize that I'm not going to agree with everything they say or do there. I also am trying to accept the fact that my son is not exactly like the rest of the kiddos in the program. He is so darn complicated! All of the professionals up there agree that Boo does not fit one specific diagnosis. He is such a mixture of FASD, Autism and ADHD (with anxiety sprinkled in there and some sort of mental health disorder). I am also feeling like they don't "get" me or Boo 100% yet. I'm getting the vibe that they think I'm overly-attached to Boo. The fact of the matter is, I've had to act as his frontal lobe for so long and as his main "translator", that it's hard to just hand him over and "trust" that they are going to figure him out. The other difficult piece to all of this is that the most brilliant mind in FASD research is one floor below Boo! She is so close to us and yet she is not affiliated with this program. I want to figure out how I can gently ask them to maybe "consult" with her....but I don't want to offend them. (This is a team of psychiatrists/psychologists and other therapists).

Here is the positive side of things:
They are really finding the "holes" in Boo's development. He (and this is so typical for kids with FASD), can look fabulous in one area of speech for instance and yet he has horrible word recall. So while he is able to string a beautiful sentence together, he can't always "access" the right word or phrase he's looking for :( He has so many learning challenges and spotty development that it's such a blessing that he is in this program where they basically assess every portion of his development! I am sooooo very grateful that he is being watched so carefully. When we leave this program, we will know EXACTLY where Boo needs help. We will know which areas of his development need intense therapy and which are on track. This wouldn't happen (and hasn't happened) with all the other assessments and professionals he's seen thus far.

In the end, I am hoping to take from this program that which will benefit Boo and discard anything that doesn't seem right to us.

I also want to add that Boo's teachers are AMAZING. They are so invested in all of these kids that are there. They have an unlimited supply of patience and are just bursting with energy! You can see that they are really genuinely there for the kids.

For all the whining and complaining I did tonight, I really am grateful for this opportunity for Boo. I am just tired, sick, and slowly beginning to realize that no matter how much experience or training someone has, it's still not enough to truly give us solid answers about Boo. This makes me sad. This makes it difficult to just keep going...and yet I do....because of Boo :) (that was not intentional..lol)

I'm off to bed. That doggone flip flappin alarm clock starts ringing way too soon after my head hits the pillow. Thanks for reading!!!

First week down, 11 more to go!

All in all, this week went very well. There is so much information to absorb. I have met so many people who will play a huge role in helping Boo.

I think Boo is sloowwwwwly warming up to the idea of "school". He had a good day yesterday. He got to go on a little bus ride around the campus and even had show and tell!

They have been testing and will continue next week. We'll start to put some goals down on paper next week and I will also meet with a behaviorist twice a week for support.

I am amazed at how tired I am from the driving. It's definitely going to take some getting used to. I applaud and empathize with anyone that is forced to commute every day. It's rough!

Ok, enough complaining. I'm going to try and enjoy our time off this weekend!

Third day of school = staying home sick

Boo woke up with a low grade fever this morning so we had to stay home. It actually worked out really well because we got to sort of relax. He's only been in the program for two days but they have been INTENSE. He has done so well. He has a hard time getting there in the morning but again it's a phenomenal program. There is so much support there that it's almost overwhelming.

I have been having a hard time wrapping my head around all of this. I knew what we were getting into. I planned and hoped and prayed for this to happen and yet....once again I find myself anxious. I thought once he was in the program I would feel at peace and at ease. I find myself worried and anxious that they will either 1. NOT see what we see and therefore think we are totally crackers for bringing him to the program or 2. He will wind up showing his full potential and then some that they will give us an even more dismal prognosis than we already have.

I already get the feeling from the staff that they are on to my anxiety. I feel like I'm being analyzed just as much as Boo! Don't get me wrong, it's a good thing. I just hope that over time they will truly get to know me and Boo well enough to know that all my anxiety and fears that I'm showing right now are not necessarily indicative of my overall parenting of Boo thus far. In other words, I am not continuously projecting my anxiety onto Boo. I am very patient with him. In fact I am MORE patient with him than with my other three children (I'm ashamed to say).

I have had so many professionals try to tell me what's wrong with Boo. I've heard everything from "You held him too much as a baby and that's why he is the way he is" to "He has conduct disorder and needs to be hospitalized immediately". I think I deserve to feel a little anxious and worried that history will repeat itself and I will walk away with another wrong answer :( I know this isn't going to happen but it's going to take me some time to build up my confidence in this new program. I have high hopes. I truly believe that this is the best place for Boo....but I'm still testing the waters.

I'll let you know how tomorrow goes!

Second day of school......

Sorry to anyone who came across my non existent post last night! I started to post last night about Boo's first day but then got distracted. I didn't realize I published it.

So here I am sitting in the parent's room at UCLA. It's after 11am and I'm waiting for Dr. S to come and meet with me.
We had a rough morning. Boo did NOT want to go to school today. He cried A LOT. It broke my heart to "make" him go but I know it's the best place for him. He had a great time yesterday. Everyone here is just wonderful!
It's hard for Boo to feel safe and comfortable but I know over time he will.

I am unbelievably tired right now. I could lay down and take a nap but am afraid I would start snoring!!

I'm going to keep this short because my brain is not working well right now. I think I'll wander down to the cafeteria once Dr. S gets here and see what I can find :)

7th floor or bust!!!!!

What a whirlwind of events the last few weeks has been! The boys have had 5 Dr's appts in the last two weeks! It's all been very good though because Boo is FINALLY starting the ECPHP next week! I still can't believe this is happening. We went up there the other day (UCLA) to do the admission and intake. I spent two hours with a social worker, the director of the program, the nurse and one of the teachers giving them a total history on Boo. They asked a million questions and I gave them as much info as I possibly could. This of course was in addition to the millions of questionaires I had already filled out. They are very thorough and so supportive!

It was hard to walk into a building that is labeled "Neuropsychiatric" facility with my 5 year old child. He's too young to really grasp "where" he is. He just thinks he's going to a fun preschool that's going to help him. I think I need to adapt my thinking as well.

I have a really good (peaceful) feeling about this new adventure we're about to embark upon. I feel that the people who run this program are top notch. They know what they are doing and they CARE. They want to help him. They want to understand him.

Boo got to go into his class for a couple of hours while I talked to the staff. He quickly made a friend with one of the teachers. The great thing about this program is there is always either one on one interaction or very very small groups. Boo will have someone shadowing him basically at all times. He will have someone to help him through his difficult moments. He will also receive speech, OT and PT therapies!
As we were leaving he told me "Mommy, I like this school because I didn't get in trouble." Ughhh that broke my heart! He had a great "intro" to the program but it won't always be that easy. The staff will push him. They need to see him melt so they can give him the skills to cope with his feelings. The director told me that they will try different techniques to see what works best for Boo. They treat each child as an individual. There is no blanket behavior mod for the class. I am so grateful for this opportunity. I am so grateful that Boo is going to be in such good hands.

I'm frustrated at the fact that if we didn't have our private insurance, Boo would not get this treatment. There are so many other children out there like Boo that will not get an accurate diagnosis due to insurance (or lack thereof). They will be labeled as defiant. They will not be understood or given the proper tools to help them in life. Boo is so complicated. He had so many strikes against him from the get go. However, I am choosing to believe that he will conquer his challenges. He will walk through this storm and come out a strong little man. He is an amazing child. God is awesome! He has blessed OUR family with this little soul who is sweet and charming and smart and FULL of life. He has a determined spirit. He WILL learn how to live with FASD and Autism. He WILL.

Ok, well I am off to bed. Tomorrow is our last day to sleep in (until 8). Next week we will all be up by 6am to get out the door. I will update next week. I will also pass on any info I receive that might help anyone reading my blog. Thanks for reading!!!