Tonight I'm mad.

I have said in previous posts that I don't feel anger towards Boo bio-mom. Well tonight I'm feeling some anger. I'm angry at the system that failed her. I'm angry at her for drinking while she was pregnant. I'm angry that there isn't a more widespread knowledge and understanding of FASD. I'm angry that because of all of those things, my son has to endure pain, anger, frustration, rage, confusion, memory loss, impulsivity, ADHD, rigidity, anxiety, depression, sleep disorders, difficulties with relationships and a general misunderstanding of his challenges.

Tonight he started tantruming. Our house gets very hot so all the windows were open. Our living room is our front room and this was where he chose to scream at the top of his lungs. I am waiting for the day when the police show up on our doorstep due to someone in our neighborhood thinking we are torturing this little boy. I honestly wish I could put a huge sign up on my house that says DON'T DRINK WHILE YOU'RE PREGNANT...THIS IS WHY!!!!!

All we can do is take it one moment at a time. I can't even say one day at a time because we live moment to moment around here. I did meet with the behaviorist from Boo's school today and we are working out a schedule for our family. My job this weekend is to take tons of pictures and print them up as visual aids for Boo :) I am really excited about this because structure is KEY with FASD.

Well that's all for now. Boo is walking around reciting lines from The Princess Bride so I think I better go get him ready for bed. Til next time.........

We have faith, hope and love!

When we started this journey with Boo, we loved him. We didn't know what the future held but we had love and hey, love is all you need, right?
Well when we were thrown a few curve balls, we realized we needed faith. We needed to have faith in our ability to parent this special child but ultimately we needed to trust that God picked us for a reason.
After seeing several professionals and receiving sixty-eleven different diagnoses, we started to lose hope that we would ever really know "how" to help our son.

Recently and after several years of frustration, we finally have been given hope. The program Boo is in right now has turned out to be a huge blessing. I know I complain about the drive, etc...but we are seeing some huge breakthroughs and improvements. Boo now looks forward to going to school. He is surrounded by people who love and care about him up there. I have to give a shout out to the staff of the ECPHP program at UCLA. These teachers, therapists, volunteers, social workers, and Doctors are beyond awesome! They genuinely care about Boo. They don't "fake" laugh when Boo does something silly. They don't "fake" praise him when he does something positive or when he grasps a new concept. They MEAN it. I've witnessed this first hand. I am amazed at the level of commitment these professionals have. I only wish I could transport this program to every school district in the nation. If there were more programs like this one, there would be more children succeeding in school and beyond. I need to post more about this subject later but I just had to get that out for now).

The other HUGE news is that we were able to meet with one of the most brilliant minds in FASD research this last week. This Dr. has dedicated her life to helping children with FASD and to find answers and hope through research. We sat down with her for two hours last week while she gave us some feedback on her observations of Boo. She definitely thinks he has ARND (alcohol related neurodevelopmental disorder) which is on the FASD spectrum. The funny thing is, most people would be devastated to hear this news but we had already known for so long that it was a relief to finally get a solid diagnosis. There is no cure. There is no known treatment. This is permanent. Boo will live with this brain damage for the rest of his life. He will struggle every day with ADHD, anxiety, learning disorders and depression. He will have to work hard to keep his temper under control and he may not always succeed. BUT....I have hope. I have hope that this little boy who God has blessed us with is going to succeed. He is going to grow up surrounded by love, encouraged by hope and guided by faith. He is awesome. God has created him for a reason. He has a purpose. He is our awesome son! We are so thankful to Dr. O Connor for the work she does. I don't know if she'll ever know how much she has helped us.
Goodnight for now.........

Ding!!! Round 2!!!!!!

Well we are officially halfway done with the program. I am ready to be 100% done but we still have some work to do.
Boo is doing awesome! He enjoys being there (for the most part). He has made some improvements in his overall behavior, social skills, communication and academics!

We have made some great friends too. It's so neat to connect with parents who just "get it". No introductions are necessary sometimes. A few weeks ago, Boo had a VERY difficult time walking to the car. It was a full blown screaming raging tantrum complete with biting, kicking, scratching, yelling, screaming, etc. I was LITERALLY wrestling Boo into the car while trying to guard the car next to us from getting hit with our car door that Boo was kicking. I started to break down and cry. I felt totally helpless and like I didn't know what to do. I knew I needed to call up to Boo's classroom and ask for help from the teacher but I couldn't let go of Boo to get my phone and I was so choked up from getting "beat up" by Boo that I couldn't talk. Right at this moment, another mother (of a child in the same program as Boo) appeared. She said "What can I do to help?" I literally just handed her my phone and said "please call upstairs". By this time, Boo was starting to calm down. This mom (angel is more like it) started talking softly to Boo. She got him calm then gave me a huge hug. I was literally dripping sweat and my face was wet with tears and she just hugged me and said "It's ok...". OH MY Goodness!!!! I can't tell you how much that meant to me right at that moment. She knew what I was going through because she has a child similar to Boo. Her empathy is what saved me that day.
Sometimes it is a lonely road we walk until someone comes along side us and gives us a little nudge :)

**I have wonderful friends with and without special needs children who are extremely supportive and I can't imagine them not in my life but I wanted to share this example of another mom who I had only "seen" but not met who knew EXACTLY what I needed that day. She knew the words that automatically calmed Boo down. She knew not to use certain phrases and to use a soft tone of voice. All of these things she knew to do because she herself has a son like mine.