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!!!

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!