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!!!

Welcome To Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



I have read this story/poem before but for some reason lately it just seems so applicable to all parents of special needs kids!

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!

Marley and Me (off topic post)

We've had a busy/exhausting week. I had to have a root canal on Thurs. I had been in a lot of pain preceding the appt. For those who know me, I am not a calm person by nature...lol.
I tend to be a tad anxious (ok, a LOT anxious). This procedure had me terrified all week. I've had 6 root canals to date and yet this one just really did me in.


Any which way, yesterday (Friday) everything just went to heck real quick. My mother in law went in for surgery, DH got a flat tire and was stung by a bee, I took Vicodin during the day and almost passed out in front of my kids right before Bo's VI teacher showed up for his lesson and a cupcake craft. It was a bit of a crazy day.

So last night, when DH left for church (plays in the band) followed by visiting his mom in the hospital, I told the kids we could watch Marley and Me since we hadn't seen it yet.

If anyone has not seen this movie yet, WATCH IT! But before you do, prepare yourself for a major sobfest!

By the end of the movie, ALL of the children (including Boo) were full on crying! Then Bo says to me "Mommy, WHY did you make us watch that?" I felt so bad. I didn't realize the ending. I just thought it looked like a fun movie about a family and their bad behaved dog. I would recommend not watching this movie if:
-You've recently lost a pet
-You have an old pet
-You've ever had to put a pet down

And that's all I'm going to say....

However, it did help the kids appreciate our dogs more :)

"Defeat is simply a signal to press onward" - Helen Keller

I have been feeling somewhat defeated lately. Defeated by this monster that has a hold on my son.

We were doing well for a couple of weeks (relatively speaking) but we found out that one of Boo's meds was causing some problems in his blood so we are weaning him off of it. We also found out that it may not be until the summer that Boo gets into the special program. So once again we're in a bit of a holding pattern. I'm ok with waiting til summer but in the meantime I feel like I'm reinventing the wheel in terms of helping Boo.

I've been reading, researching and talking with other parents of children with FASD and ASD. I've been able to consult with several professionals working with FASD kids and am more determined than ever to be that loud outspoken advocate mom who wants to educate EVERYONE on FASD. I recently read this interview with Dr. Sterling Clarren who is a world renowned expert on FASD. It's a great read!
Dr. Clarren points out that FASD is not being diagnosed properly because many children (like mine) do not have the facial features that go along with classic FAS. However, as research is beginning to show, the brain can be affected at any point in pregnancy from beginning to end. In Boo's case, it is likely his birth mother drank throughout her entire pregnancy. His brain (from the tests that have been done on him so far) shows huge deficits in his executive functioning (the frontal lobe of the brain). This affects his ability to self regulate, to integrate sensory stimuli, to reason, to not act on impulse, memory, and the list goes on.
To put it in perspective. Boo is now five and it has taken us nearly one month to teach him one letter. He is also just beginning to really remember the names of his colors. This is a HUGE milestone for him. We are constantly learning new ways to teach/help him. I am learning that there are many other mothers of children with FASD (and the other dx's that follow) out there. I am both saddened and comforted by the stories of these moms. It helps to know you're not alone. It also makes us more fired up and determined to help our children. Why do you think FASD is not more well known? It is THE leading cause of mental retardation in the US. Any Idea$?
" The alcohol industry profits from children and has no economic interest to reduce underage drinking. Underage drinking accounts for $22.5 billion of the total $116.2 billion spent by consumers on alcoholic beverages" From THIS article.

Ok, I'm stepping off of my "mama bear" pedestal now. I need to get to bed because Boo has decided that waking up at 6am is a blast! Thanks for reading!