Stop FASt, give a dollar! (preview)

As I've mentioned before, there is something huge in the works in my life. God has put it on my heart and made it very known to me what I need to do. With the help of a major university, we will be launching a big FASD awareness campaign!!!! This is still in the VERY early stages but I've been given the green light by this university to go ahead with my plan. There are so many details to work out. I have no business background, no marketing background, no public relations background but I somehow will be tackling all of these things and more as I embark on this new chapter of my life. I keep saying "my" but it really is about "us". It will include my family, friends, strangers, my blogging friends/acquaintances and anyone else that is passionate about FASD awareness.
Our vision has several goals.

1. To bring awareness of FASD to every person in the US and
potentially worldwide.
2. To educate Social Services, Physicians (particularly peds and dev. peds),
hospitals, children’s clinics, DCFS, WIC offices, Social workers,
Educators, Administrators, LAW ENFORCEMENT, etc on the
REALITY of FASD. (ie: What does it look like? Treatment?
Prevention? Prevalence?)
3. To raise enough awareness that would generate funds for an FASD
research/treatment center at UCLA.
4. To bring together all grassroots operations around the country who
have the same vision of getting awareness out into their communities.
5. Uniting the fight against FASD with the simple idea that anyone can
help end FASD by simply donating a $1.

Now I realize someone living in a different state than Ca. might not see the benefit of donating money to opening a research and assessment center so far away but these centers are so desperately needed everywhere. There are some great hospitals and universities around the country right now that do offer diagnosis of FASD's but they are few and far between. The need is great and the time is now.

I do not want to see my son fall through the cracks anymore. I do not want my son to become another statistic. I do not want my friends children to be a statistic either. 80% of inmates NATIONWIDE have been through the foster care system at one point in their lives. Up to 70% of foster children have been affected by alcohol. These stats are frightening. Alcohol exposure in utero leads to permanent brain damage. Brain damage that includes but is not limited to: loss of executive brain function, poor impulse control, hyperactivity, poor memory, lower IQ, learning disabilities, stunted emotional growth (fewer than 10% of people with FASD are able to achieve success with working and living independently).

So where do we go from here? Well, I'm praying that God will pave a clear path for me and honestly, I'm doing this one step at a time through Him.

If you have a child with FASD and are reading this, please let me know if you would like to help (even praying is GREATLY appreciated). Right now we are in the planning and development stage and I am unclear on a lot of things. I am very excited to be doing this and will share at a later time how it all came to be in the first place.

That's all for now since it's nearly midnight and I still need to clean up the house a bit before I hit the sack. Until next time.......

It's like trying to wash your windows during a hurricane.....

As I said in my last post, I'm working on cleaning/organizing/simplifying. It's a process but it's been consistent. I'm proud of the work I've accomplished so far because I'm seeing results and am so happy with the changes I'm making. However, the title of this post says it all.
While I'm working on cleaning out a cupboard, Boo is raging over something in another room, making a huge mess. He needs one on one time nearly constantly. He needs reminders, redirection and someone who knows how to "change the channel" in his brain when he gets stuck on something.
I'm typing on my laptop that has several missing keys because Boo was mad and ripped them off the other day. This was after he raged in his own room and dumped every toy out of his bins/closet/etc. It's tiresome to constantly deal with unreasonable little brains. It's exhausting.
So I have to give myself grace and realize that Rome wasn't built in a day. The house will get cleaned and organized but it will get messy and disorganized again.
Baby steps. Just like Boo learning to control his rage and Bo learning braille. Two steps forward, one step back.
Until next time.....

Busy Busy Busy.....

So much going on lately! Aside from the big "thing" that I'm working on and talked about in a previous post (which I promise will be revealed soon!), I've been trying to get our house in order. It's summer and I'd like for us to enjoy some down time but I also know that Sept. is right around the corner so the time for organizing, cleaning out and reconfiguring things is now. I'm also in the process of figuring out curriculum for next year for the kids. One of the benefits of homeschooling is the freedom to choose curriculum based on a child's needs. This is great but of course it takes tons of time hunting down that perfect curriculum for each individual child.

I was able to score some great supplementary materials last week at a garage sale. I found a finger puppet theater with puppets, a felt board with felt people/animals, some super big Magic School Bus books (floor size), some foam puzzles, a Lakeshore Teacher planner (brand new), an elementary art curriculum book, a large pocket chart with stacks of words to make sentences, a stack of Brain Quest cards, a stack of dinosaur books for Boo (he picked them all out and they even threw in a large dinosaur time line poster for free!), and a huge Sterilite container full of Play Mobile toys!!! I spent $20 on all of the above and my car was loaded up with great treasures! Now I have to try to organize it all so it's easily accessible and doesn't add to the clutter!

But of course like I said before, we're trying to take some time to relax too and refuel so we're ready to plunge back into school come Sept. with a refreshed mind and attitude.

We're going to head to the beach one day this week and Bo starts Judo too so we'll be having some fun adventures! Until next time.......

The word "Normal".....(warning...this is a rant)

I'm sitting here tonight angry. I'm angry, sad and frustrated. There are many reasons why but one in particular tonight set me off the deep end. Boo has a new tic. He tends to repeat himself (under his breath) after he finishes a sentence. Sometimes he does it before too. I think he's trying to let what he says sink in himself. He has some processing deficits.
So tonight I was trying to find a "name" for this new tic and I came across a message board where a mother of a neuro typical child was going on and on how her son started doing (the same thing Boo does). She was horrified at his behavior and told him he needed to stop it because it wasn't socially appropriate. She used the words "bizarre, weird and not normal".
For some, reading this blog post, may not see the big deal in what she said. Heck, 10 years ago, I maybe would have agreed with her!
Now? I am sickened by her choice of words. It hurts my heart and it makes me angry. It feels like a direct attack on MY child. It's just ONE more thing that people can criticize him for.
I should have prefaced all of this by saying we went to church this morning for the first time in a long time. I shadowed Boo in his first grade class! (They promoted last week). While all the other kiddos were sitting still listening to the short message, Boo was crawling all over the carpet. When it was time to play "Bingo", Boo couldn't read any of the words. When it was time to answer questions, it took Boo too long to understand the question, that he didn't have a chance to answer.
To top all of that off, Bo had a tough time in his class as well. He wanted to sit with his friend who sat towards the back. Well then Bo couldn't see the short movie they showed followed by the worship songs (the words are on the screen). He's 10 so it's not like he feels comfortable saying "Hey, friend, can we go sit up front so I can see better". Then I find out that he didn't get his Bingo card. He said he asked twice but they didn't hear him....so he missed out on that too!
So after all of that, the last thing I wanted to hear is a mother ranting about the possibility of her child not being "normal".
I HATE that word. It infers that if you don't fit in perfectly you're not "normal". What the heck is "normal" anyway? I have yet to see a prototype of "normal". Every human I know has issues. We all have our quirks, our weaknesses, our fears, our limitations. So if being "normal" means you have little to no tolerance for "not normal", then maybe I'll stick to "not normal". I don't like the exclusivity of a club where I have to look and talk like everyone to fit in. Even if that club is termed "life". (end rant)

***I do have to add that Boo won a Bingo game at church (I helped him find the words). He won a piece of candy. He then turned to the little boy next to him and gave him his candy. He did this on his own with no prodding from me. His teacher recognized what he did and gave him another piece :)

Hamster Time!!

As if we didn't have enough going on with 2 cats and a dog, we have added a hamster. Now for those that know me, you know that we are FAR from the perfect pet owners. But.....this is more of a therapeutic tactic. Our dog is a "family" dog, the cats are really Banana's thing. This new pet is just for Boo. As a matter of fact, he is responsible for his hamster. We had several long discussions prior to going to the pet store. Actually in FASD world, even though I was telling Boo that the hamster would need daily interaction, fresh food, water and a clean cage, he heard "blah blah blah blah blah blah....blah!"
We started the day by looking up "hamster care" on the internet. Then we called around to price set ups. Then we went down to Petsmart to "audition" the hamsters. We decided to NOT get a hamster from Petsmart because they were not friendly. (the hamsters, not the employees..lol). We did buy the set up from there because it was considerably cheaper than at Petco. We then went to Petco and held every. single. hamster. they. had. Boo had to find one that A. he liked and B. was ok with being handled.
We settled on a little gray short haired girl. She's very sweet and has been ok with being handled. We did take the employees suggestion and didn't take her out of her cage for 24 hours. (Apparently if you take them out in the first day, they become escape artists).
We are 36 hours into our hamster ownership and Boo is being very attentive. The goal is to teach him responsibility, empathy, and kindness. He has already told me he wanted to send her back to the pet store because he's afraid he won't be able to do everything. I reassured him that I will help him (the plan is that I will supervise all of the interaction/cleaning/feeding.) He is also aware that if he starts raging, hamster cannot be near him. This will hopefully also show him that his rages affect EVERYONE.
So that's all for now. Until next time.....

Pablo's birthday

Last year I was fortunate enough to have been "introduced" to Pablo. No, I never met him but I followed his dad's blog. Pablo was another cancer warrior who lost the battle to this ugly disease June 27th, 2009. Please join me in lifting Pablo's family up in prayer. Pablo's 7th birthday is tomorrow June 21st.
You can read more about Pablo and his very awesome family HERE

And on Facebook Pablove Foundation

Happy Birthday, Pablo!!! xoxoxo

Bo Brag....

I know I tend to post more about Boo and his challenges/triumphs so I thought I'd give a Bo update!

My sweet third child is honestly one of the most empathetic and compassionate children I know. Of course I'm biased as his mother, but truly he is! If someone is upset, he is always right there to comfort them. I am constantly telling him to never change or lose his ability to empathize with people because it's such a wonderful gift!

It is not easy being Boo's older brother. Bo has the patience of a saint (most of the time ;) ).

It is the end of the school year and we are trying to tie up loose ends and get as much schoolwork finished as possible before we take our break. Bo HATES to do his braille. He absolutely detests it. It's hard for him to concentrate and using a Brailler takes concentration and strong fingers. Through it all, and with the guidance, EXTREME patience and kindness of his Braille teacher, Bo has succeeded in learning not only the entire Braille alphabet but also 30+ contractions (basically shorthand for Braille). He is not yet reading well with his fingers. He still wants to read the dots on the paper instead of feeling them. That will come in time but for now he is able to use his Brailler to type sentences, paragraphs and letters. I am so proud of him for his hard work!

Bo may never "need" to use Braille but then again, he may. There is no guarantee that his vision will be stable forever. His prescription has gotten stronger over the last couple of years and most likely will continue to do so as he gets closer to the teenage years. He needs to have as many back up plans for reading as possible. He LOVES to read and it is definitely a strength of his.

That's all for now....until next time......(I promise more Bo updates on the way)