"Every child is gifted. They just unwrap their packages at different times." -- unknown

Remember when you were a child and the end of the summer was approaching? Do you remember that mixture of feelings you had about going back to school? For me, it was usually dread mixed with a dash of excitement and a huge side of nausea.
I thought that once I was done with school I would never have that feeling again. Wrong.
Apparently this is something that (can) come back when your special needs child starts a new school (year).
Boo starts school next week. Not just "school" but KINDERGARTEN. Every mother has the tug of the heart when they send their child off to school for the first time. However, there are a few obstacles we have to jump over before I can reduce my feelings of Boo going to school from pure gut wrenching heartburn to the happy tears of another milestone met.
Just like in the quote above (see: title), Boo unwraps his package at a slower and unpredictable pace. He frustrates easy and it takes extreme patience to teach him. He is capable of learning but it doesn't come as easy for him as most 5 year olds. Boo is more like a 3 year old in many respects. So imagine if you will, sending your 3 year old to Kindergarten and expecting them to learn their letters, numbers, shapes, etc at a steady pace. Imagine sending your 2 year old to a Kindergarten class and expecting him to sit there during story time, classwork, etc. As you can see, Boo has some difficult days ahead. I have no doubt in his ability to do well. I know he WANTS to learn. He is excited to learn. (Thanks, UCLA ;) ). He just needs the understanding, patience and expertise of a caring teacher. He needs people on his team that are willing to READ the report from UCLA and implement the strategies used up there that helped Boo succeed!
I am already having conversations with the faculty that are not putting my mind at ease. I am already feeling a sense of "yeah, yeah, we know what to do". I am not a confrontational person but I can already feel my mama bear claws starting to emerge. The school WILL listen to me because I AM Boo's mother. I have spent the last 5 years advocating for my son. I have read, researched, and had him evaluated by countless professionals. The school WILL NOT close their ears to me.
Ok, I just had to get that out because in reality I will not make a scene...but I will make sure that Boo gets exactly what he needs.
I will update once I finalize his registration. 'Night!

Moving on......

Man, this is harder than I imagined. I didn't realize just how much I was going to miss our "people" up at UCLA. I was so anxious to be done with that darn commute and the total disruption of our every day life that I didn't account for how I would feel when we were "done". I have been in this depression for the last week and it's time to shake it off! It's time to turn to the One who can help more than any program or person. I gained a false sense of security when we were up there; akin to Dorothy's ruby slippers if you will. I felt like as long as we were there and under the supervision and direction of this magnificent staff, we were "safe". The truth of the matter is, we were no more "protected" than we are now. When Boo melts down, I'm still the one to walk him through it. I'm still the one who reads, researches, connects and advocates for him. That has never changed. We have been given new tools and validation, true. We are much better off now than pre-program. I need to keep reminding myself of this.
Change is not something I'm good at. I prefer things to stay the same (except for furniture ;) ) Boo is not good with change either. Transitions (big and small) are extremely difficult for him. It's hard for me to watch him miss his teachers. He especially misses his one teacher who became his best buddy. (see, I'm tearing up just typing this). "B" was an amazing influence on Boo. I am hoping we can stay connected somehow because I would love for him to continue on as Boo's mentor through life.
So no fancy quotes, no catchy phrases, no inspiring verses....just raw feelings and emotions here. I am turning to God for his guidance. He loves Boo even more than we do. I know His plan is perfect. We will continue to take it one day at a time and really hold on tight to the things we learned from UCLA.
The next few weeks will be a little chaotic. My oldest starts high school (big deep breath), Bo and Banana will start 4th and 5th grade (at home) and Boo will start Kindergarten!!! It's going to be a wild ride but exciting all the way! Our family does not know how to do boring...;)
Stay tuned for first day of school reports.....and I'm still waiting on pics from Boo's graduation so I'll post those as soon as I get them too!
'night!

Be yourself, everyone else is already taken. ~ Oscar Wilde

Well we made it. 12 weeks of intense learning, therapy, evaluating, examining, trial and error, success, frustration, hope and SUCCESS!
I am feeling so overwhelmed with emotion right now that it's hard to really convey how I'm feeling. I thought I would feel relieved to be done. I am a little. I am more scared than anything. I didn't realize how much I came to depend on the staff and the parents up there. I was so used to doing everything on my own. I didn't realize that while I was up there, I started letting go of some of that control (fear). I began to see progress and began to have faith in these wonderful teachers and therapists who grew to love and care about my son more than I could ever imagine. Now it's over. Now we're back in the "real world". I feel the weight of all of Boo's challenges back on my shoulders. I'm sure it's just the raw emotions coming out. I know in a few days (or a few weeks), I will settle back into my old role as the warrior mother.
I also walk away from this wonderful experience with more confidence in Boo. I have confidence that he will become the person God has created him to be. He is perfectly made and uniquely "Boo". He is an amazing child of God who I sing praises for every day.
Ok, so I know I promised pictures but my camera battery died (grrrrr). I have to wait for one of the staff to email me the pics she took for us. Once I get them, I'll post.
Next stop: IEP meeting with the new school. I am hoping we can do that in the next few weeks as school starts Sept 9th!
I'll update soon. 'Night!

Gearing up for our big goodbye....

Boo will officially graduate from UCLA on Tues. I am all over the map right now with emotions. I am selfishly ecstatic to be done with that commute but terrified to be "on our own" again.
Boo has made such incredible progress. He has charmed his way into the hearts of every teacher and staff member. He has gained independence, self confidence, and a love for learning :) He really WANTS to learn now. This is a huge accomplishment for us (him).

I have much to do this weekend to prepare for Boo's big graduation. I have more thank you's to write out than I can even count however, there really are no words to describe how grateful I am to the teachers and staff. If I could keep him in this program until he graduates college, I would!!!!!

Well I need to keep this little update short. I know I haven't posted many resources lately but am hoping once we are done next week, I will have a little more time to share info/resources/etc with you.

I'll post pics on Tues after graduation!!!!!

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.