Adventures with Bo and Boo

Hannah's prayer....

2011-11-26T13:26:00.000-08:00

Well....it's been a year since I've updated my blog and there certainly has been a lot that has happened since then but the biggest thing is that we are back in the fost-adopt world again.

Last week we were called to take a 9 day old baby boy weighing only 4 lbs 12 ozs. He was the call we had been praying for. It was a possible adoptive placement which made it extra special.
Ever since we began this journey back into foster care, I have been praying for the children that would be placed with us...most especially the one we would adopt. In my mind, it would be another African American baby boy fresh from the hospital.
The thing is, there are no guarantees in foster care. You have to receive each child with an open heart...knowing that God has a plan for that child...and that plan may include them spending only a short time in your home. I have been praying that God will keep my heart pure. It is easy to become selfish when you hold these sweet babies in your arms. You never want to let them go.

Ok, so skip forward to yesterday.....We have been given the opportunity to name this sweet baby boy we have. His birth mother didn't name him because it was her intention to place him for adoption. Rich and I haven't been able to agree on a name all week. We had a list of them but honestly, neither one of us could commit to any of them. I was getting frustrated with my sweet husband (and myself) for not being able to settle. I should back up for a second and say that the second I saw our baby boy in the hospital, the name "Samuel" popped into my head. I don't know why. I have never particularly cared for that name.
Well, all week long, I kept "seeing" Samuel every time I looked at his sweet face...but I kept saying to everyone..."I don't really like that name but I keep going back to it".

So yesterday morning, Boo talked me into stopping by the grocery store to pick up some more caps for his cap gun (I needed to refill a prescription anyway). When I walked in, I ran into a lady that worked there that I had spoken with last week when I had been in with our 2 month old baby girl (told you we had a busy house ;) ). The lady, who later I found out is Margie, had commented on how beautiful our baby girl was....I told her she was our foster daughter and Margie shared that she has a 6 month old granddaughter. We said our nice to meet you's and went on our way.....so yesterday when I saw her again, she asked how our baby girl was and I showed her our baby boy :) She ohhh'd and ahhhh'd over him and told me how precious he was....then she said to him "God has big plans for you"....to which I said "Yes, I think so too".....she asked me what his name was and I explained our dilemma.....she said "What name do you like?" I told her Owen or Samuel....she looked at me and said "Oh Samuel....the promised one....you know the story of Hannah, right?....She begged God for a child and sent her Samuel." Right then and there, I started crying....I told her that the name Samuel kept coming to me but I didn't know why and I didn't necessarily want to name him that.....all of a sudden, I felt overwhelmed with emotion...as did Margie...we both stood there and cried. The thing that gives me chills is that when I was pregnant with my Hannah, I was having bad contractions early on.....my grandma called me one day and told me I shouldn't worry because her whole bible study group was praying for me and the baby....she said that they had been studying the story of Hannah and that I should consider naming our baby, Hannah. She said she felt like God was telling her, everything was going to be ok. Now, I don't know if God is promising us Samuel forever or not....I would like to think so since I had been praying for him for so long....but either way, God has big plans for our Samuel Owen Vincent..and like Hannah, I will dedicate him back to God and trust in His will and sovereignty.

So this is Christmas.....

2010-12-25T20:22:00.000-08:00

I've neglected my blog. I'll admit it. I'm lame at blogging ;) I have so many friends who are expert bloggers. They amaze me with their eloquent words and beautiful pictures.
I aspire to be more like them but alas I'm not.
I have been working hard on Stop FASD Today! The website is coming along. I really need a good web designer to help me so if anyone reading this knows of one that would donate their time/services, please let me know :)

I'm thinking we will be launching the new site in the next few months. It's taking longer than I anticipated but I know it will be worth the wait.

Bo and Boo are doing well. They are busy with school. Boo now knows ALL of his letters!!!! He amazes me every day with his intelligence.

I'm still working on juggling all of Bo and Boo's services but things seem to finally be falling into a nice rhythm.

I can't believe we are in the last week of 2010! Where did this year go? Where did the last 18 years go for that matter? We will be celebrating our 18th wedding anniversary next week and I honestly can remember our wedding day like it was yesterday!

It's been quite a ride but I think the best is yet to come ;)

Merry Christmas to everyone and a very Happy and Blessed New year!!!!

And I'm back.................

2010-09-29T22:38:00.001-07:00

Well that last few months have been a bit of a roller coaster ride. I have all sorts of health issues and unfortunately my body decided to get my attention last month by sending me to the ER. I'll spare you the details but what started out as the possibility of Crohns disease ended at the possibility of endometrial cancer. Thankfully I don't have the latter. I had to have a biopsy last week and the results came back benign. I can't tell you how SCARY these past few weeks have been wondering and waiting. It has also been especially crazy because we started back up with school! The boys both have IEP's and evaluations going on. Boo started Speech, OT and academic tutoring and Bo is back with his VI teacher twice a week. I've been running around like a chicken with no head trying to get things into somewhat of a routine and in the midst of all this has been several Dr's appts for me and Boo. Needless to say, I haven't had time to tend to this blog OR to StopFASt. The good news is that now that things are somewhat under control, I'm ready to tackle my project again!
I don't have all the answers to my health issues and I still need to sort a few things out to get to the root cause of things but I am taking it one day at a time. I'm eating healthier, eating less and losing weight! I'm working on changing old habits (bye bye chocolate!) and incorporating new ones (hello veggies!). It's not easy but it's all part of the process of healing!
Until next time........

Life

2010-09-01T22:50:00.000-07:00

To say things have been busy would be an understatement. Life has once again taken the form of a tornado. There are so many things going on and no time to truly stop and update or even think for that matter. I'm going to summarize using bullet points because while I'm determined to give an update, I'm literally falling asleep as I type.

*Stop FASt is in the works but is moving slow. I am still in need of a graphic artist so if anyone knows of one willing to do a charity project, please let me know :)

*We started school and haven't had a moment to breathe. There are lots of services to set up and the kids all have different interests, etc so it will be a busy year!

*I've had all sorts of health issues including an ER trip and a few specialists. I've never had the best "stomach" and right now my body is telling me to pay attention to it....so I am...

I could elaborate for hours on all three of those points but will have to save it for another day.

Until next time.....

Quick update...

2010-08-12T23:26:00.000-07:00

Stop FASt is coming along although there may be a name change;) I've had a rough couple of weeks with some illnesses but hopefully will soon be on the mend and back in business.
This is a slow process and patience is the key but I know that perseverance will pay off in the end. UCLA has been very gracious and is working hard to make my vision a reality.

Lots more to update...stay tuned!

Stop FASt, give a dollar! (preview)

2010-07-16T23:20:00.000-07:00

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.....

2010-07-12T23:18:00.000-07:00

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.....

2010-07-05T22:38:00.000-07:00

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)

2010-06-27T21:48:00.000-07:00

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!!

2010-06-24T21:46:00.000-07:00

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

2010-06-20T14:28:00.000-07:00

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....

2010-06-13T20:48:00.000-07:00

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)

15 letters AND their sounds!!!

2010-06-05T22:58:00.000-07:00

I tested Boo last week on his letters. I caught him in a rather cooperative mood and since he "wanted" to do school (there have been more and more moments like this lately PRAISE GOD!), I figured I'd see how much he's absorbed this year.

It turns out that my brilliant child has learned 15 letters and their sounds so far!!! When we started this school year, he only knew 7! He also didn't really know the sounds of the letters but guess what?? He is finally putting it all together!!! We've started a trial program using Headsprout
It's similar to Starfall but it seems to be a little more captivating for Boo so we're going to continue with the free trial and then decide if we want to purchase the whole deal.

I can't tell you how happy I am that Boo is progressing. I know it may seem like a small step forward but for us this is a huge leap in the right direction. Repetition, repetition, repetition! It is the mantra for learning in the FASD world! He needs to hear things over and over to absorb it. The conditions have to be just right. He won't learn/absorb if he's upset or anxious. He needs to be in a calm state with an eagerness to learn. Boo's brain doesn't just gather new info and store it. It takes him several times before it starts to sink in.

I realize most children are like this as well but this goes above and beyond your average neuro-typical child. To get Boo to a place where he's calm and relaxed is a great feat! His engine runs at 90 miles an hour from the second he wakes up til the second he crashes at night. There is no "down time" except when he's sleeping. Even then, he often tosses and turns, yells, kicks, etc in his sleep. Imagine your worst night's sleep, then waking up and being given 20 cups of coffee or soda (caffeine), now imagine going to work or school with that body. You're amped but you're tired. You're cranky and easily agitated but the expectations are that you will behave and you will do your job/schoolwork. Now imagine living that life every. single. day.
(Of course to make the above scenario fair, you'd have to imagine having brain damage that prevents you from learning easily, anxiety, a sense that people are out to get you and the inability to regulate your emotions, then you could have a sense of what Boo feels every day). It's not a pretty picture so the fact that he has 15 letters in his brain, is cause for celebration!
That's all for now..

Until next time....

Fish Oil!

2010-05-31T20:59:00.000-07:00

We started our fish oil supplements! We are using Carlson's which is a very trusted brand.

Fish oil, specifically EPA and DHA, have been found to help with ADHD and mood disorders. You can read more about it HERE

I started taking it too because 1. I'm hoping it will help me some with my health issues and 2. I'm trying to set a good example for Boo. It really doesn't taste bad at all. It has a strong lemon flavor so there are no fish burps. Boo calls it "lemon oil". The worst part about it is getting used to swallowing oil. It's an odd sensation and for children with sensory issues, it may be harder to get in them. However, I'm hoping the benefits outweigh the icky factor.

Boo has been a trooper taking it. I have mixed it with some lemonade and he really doesn't mind at all. My hope is that it would make a significant enough difference in Boo's mood that we could maybe pull back on one of his meds. We'll see how it goes and I'll keep you posted.

Until next time.....

Heartburn and Heartache

2010-05-26T22:28:00.000-07:00

Tonight I have both! My oldest told me last week "Do you realize how much you've aged in the last 6 years, mom?!" Well after I resisted my urge to cry and scream at her for saying such a rude thing, I realized......she was right. My health has taken a tumble (not that it has ever been great). I've been better at making and keeping appts. but I have a long list of things that I should be doing.

*exercise (yeah right...I'll squeeze that in right after my bon bons and General Hospital)

*giving up caffeine (oh ok, then I'll give up breathing too...same thing)

*taking vitamins regularly (this I CAN do and have already begun ;) )

*cutting out fatty foods and sugar (this isn't as bad as caffeine but it's so stinkin difficult!)

I am working on changing some thing about myself. I feel like I've made some significant strides in the last few months and I'm proud of myself for doing those things but I have to get serious about my health. My children need me. They need me to set a good example. They need to see me taking care of myself so that they will do the same when their lives get chaotic and hectic.

Now onto the heartache: My heart longs for another baby. My body is not strong enough to handle another pregnancy and that hurts me more than I can describe in words. We've dealt with secondary infertility for several years. It's something that I have no control over. We won't go to specialists because we feel that God has a plan for us to adopt again. We know it will happen but it's the waiting that is hard. How do you know when to add another child when you have special needs children? Is it fair to them? Is it fair to the other children? Is it fair to your marriage? There are so many questions and concerns. However, I am a mommy who has seen the faces of orphans. I have seen babies who just need a mommy and papa (our term for daddy) to love them. How do you turn your back when you know those babies are out there needing a forever home? I can't answer that question. We are not in a place today to adopt another baby. But I know we will be in that place again. Until then, I can only pray for God's perfect timing to be clear to us and for my health to be restored so that I can be the strongest, healthiest mom I can be to my children.

That's all for now....until next time.......

Did you know? Facts about FASD

2010-05-18T22:16:00.000-07:00

Did you know that *when a woman takes a drink when she's pregnant, the developing baby gets that same amount of alcohol? There is no "filter" with alcohol. Whatever mom drinks, baby drinks.

*The central nervous system is forming from day 1 to delivery in a fetus. Alcohol can affect the brain's development at any time during pregnancy causing PERMANENT brain damage.

*There is a chart here: http://www.fasdcenter.samhsa.gov/documents/WYNK_Effects_Fetus.pdf that shows the stages of development in a fetus.

*FASD is the leading cause of mental retardation in the United States.

Therapy?

2010-05-14T23:00:00.000-07:00

We've had a therapist coming over once a week for a few months now. I really like her but I dread when she comes. She comes to help Boo process through all of his feelings about adoption. She also comes to help me deal with my "junk" as I put it.

Let's face it. We all have "junk". None of us had perfect childhoods. We've all gone through a rough time here or there. Everyone could benefit from some sort of therapy at some point in their life. (disclaimer: I'm not judging anyone who doesn't go to therapy because it's not for everyone. I'm making a generalization).

Anyway, today I was dreading our appt. because I just didn't want to talk about myself. I didn't want to drudge up old wounds. It just feels "uncomfortable".

Apparently Boo feels the same way because when the therapist started working with him, he began RAGING. I won't go into all the details but it lasted two hours, ended with Boo and me sobbing (literally), and resulted in our living room being destroyed.

The thing about having a child with FASD is that there is no sure fire treatment. Therapy is helpful for most people. Most people can connect the dots, vent and heal. Boo has many wounds that may or may not heal. He may feel healed one day and the next forget the progress he made the day before. That is the way of FAS. So why keep going? Well, you throw everything you can at it and hope that some stuff sticks. That's what we need to do. This therapy may help Boo. It may not. We don't know but we can't give up. We'll keep trying different things until something works.

Well, I'm finding myself falling asleep as I type this so I'm going to call it a night. Until next time.......

"I'm sorry, mommy"

2010-05-12T23:11:00.000-07:00

Those three words brought me to my knees today. We are in a medication trial phase right now so things have been a little more roller coaster-esque for Boo. He has had several meltdowns in the last week or so. Today was no exception. He took a nap today and upon awaking, I told him that we would go to the Nature Center (a nice big hiking park near our house. It feels like a cross between the Hundred Acre woods and the Jungle Cruise ride at Disneyland).
Anyway, he yelled that he didn't want to go. He refused to get up and change (still in his pj's from the morning). He screamed, yelled, and tantrumed for a good hour. Everyone was anxious to go. We were all waiting on Boo to settle down. Finally, I was in the kitchen making some PB and J's to take with us and Boo comes up to me and says....."I'm sorry, mommy.....sometimes I just can't control my temper". I got down on my knees to his level, gave him a massive hug and told him that I was so proud of him for apologizing and that it's ok and I love him.

This was HUGE. Boo is such a sensitive soul. He shows empathy towards people. He is compassionate and loving. His self regulation is just broken. He can't control his anger sometimes and it scares him. It scares US. We don't want him to feel so angry and out of control all the time.

So today was rough but we made some progress.

**Although I have to add the disclaimer that it's 11:30 pm and Boo was just tantruming because he couldn't eat 3 ice cream sandwiches right now. One step forward, two steps back, right?

Until next time.........

Ideas, seeds, growth

2010-05-05T23:48:00.000-07:00

I love watching old episodes of I Love Lucy. My husband thinks I am just like Lucy in some ways. I have some great ideas that don't always turn out great. I've come up with some humdingers, let me tell you. One time, a dear friend and I had a great idea to go buy an above ground pool. It was hot, our kids (I only had one at the time) were little and hey, seemed like a good idea. I picked one that would have given my husband a heart attack ($$$) and proceeded to ask the pool man if he thought we could have it up and running before my husband came home from work? Thankfully the answer was NO, and I ultimately decided against that plan. Another time I had the great idea of free hand drawing a mural on my daughter's wall (she was 2 and an only child at the time). I figured I would paint uneven green strokes on the bottom of the wall and add flowers about halfway up (grass/flowers). This turned out poorly. I think my two year old would have done a better job. Art has never been my forte.
My sweet husband has always been supportive of my endeavors. Although most of my endeavors are started while my sweet husband is at work ;) I could write a book on all of my "great ideas" that ended in disaster or could have been turned into a sitcom.

However, even though I've had my fair share of "Lucy" ideas, I've also had some inspiring ideas that have come from meditation and prayer. Once we were presented with a special needs adoption. It was a baby girl who was deaf. My heart broke for her and I instantly wanted to move forward. I prayed and prayed and pleaded with my husband that it was the right thing to do because I just "felt" it in my heart. Well we started moving forward but it was soon clear to us that it was not our time and this child was not meant to come to us. I had peace about it. It was good.

I shared that story because there is another "big idea" brewing in me lately. It's not another adoption (that is down the road). It's something that has been building in me since I was born, I think. My grandma used to tell me that everyone is special. God has a purpose for everyone. I truly believe this. I know my strengths and weaknesses. I know that God has plans for me (as He does for everyone). I feel that things are coming together lately for something huge. I can't wait to share it with you but you'll have to wait a little longer as I'm still working out the details ;)

It will be something that will impact my Boo, and every child and family out there that is affected by alcohol and drugs. I'm planting a seed and I can't wait to see how it grows!

Until next time.....

I want to fix it!!!!

2010-04-30T21:56:00.000-07:00

I'll talk more about my extended break and blog changes in my next post but I have to get this out because it's eating me alive lately.

I WANT TO FIX MY CHILD!!!

There I said it! I want to fix his hurt, anger, frustration, confusion and pain. I want him to feel carefree, secure, happy, and confident!
Boo wakes up in the morning and part of his brain is turned on full speed ahead. His body is still waking up and parts of his brain are still groggy. This makes for a frustrated, antsy, and sometimes angry child. He wants cereal, no, not that kind. He wants to play a game, no not that one. He wants his brother to wake up and play with him but I remind him that we don't wake up our brother when he's still asleep. Why not? Well, he is sleeping and would you like me to wake you----I WANT BO TO PLAY WITH ME, I WANT BO TO PLAY WITH ME (repeat x 1 million add screaming and yelling liberally)

This is just the first five minutes after Boo wakes up! Yes, it does sound like he's being unreasonable and some might even label this "bratty" behavior. Well you can judge all you want (general you, not my readers ;) ) but the fact remains that my son is brain damaged. The womb for Boo was an abusive environment. He was drinking and getting high when he should have been growing and developing. He was feeling stress and pain. He was hearing anger and rejection when he should have been hearing the soothing sound of his mommy's voice. He was lacking nutrition and prenatal care. What does this all mean? It means that my Boo's brain is lacking many of the necessary elements to help him function. He has to work at controlling his emotions every. second. of. the. day. He has to work at listening to what other people are telling him because his brain cannot process all the words people are saying. He has to work at feeling calm because his natural state is anxious. What every other child just does naturally, Boo has to work extra hard to accomplish.

The worst part of it all? I CAN'T FIX IT! I can't take away his anxiety. I can't fix the broken parts of his brain. I can't turn back time and cure his birth mother of her addictions and mental illnesses. I can't do it. It's a horrible feeling. It's one that I am struggling with every day. It shakes me to my core and leaves me feeling like I have failed. I didn't cause this and yet I feel responsible. I feel anger at myself for not being there to protect him even though I didn't know him. I can't rationalize my feelings. I realize they are irrational yet they are real. They are real to Boo too. He is angry at me. He is angry that I took him from his birth mother. He has every right to be mad and sad. He lost his mother. As much as I love him and as much as we pour into him, it will never fill the hole that his birth mother left. I often tell people that I wish Boo could feel what I feel towards him because then he would know how much I love him. But even then, all the love in the world is not going to fix the loss of his first mother.

So then it boils down to this: I can't fix him. I can love him, teach him, be his mommy, his teacher, his foundation but I can't fix him. I need to turn to the One who loves him even more than I do. I need to put my faith in Him because He says:
"Trust in the LORD with all your heart And do not lean on your own understanding."
proverbs 3:5

It's easier said than done but I need to remind myself of this often. I need to model my faith for Boo so that he can learn to trust in God too.

That's all for now.

Blog Break

2010-03-24T23:04:00.000-07:00

I've taken an extended break from this blog. There is so much I want to write about but when I start writing, I feel like I have to filter it all so much as not to give away too many private details of our family.

I'm not gone forever, but I'm trying to figure out how to change things a bit here on this blog.

Please be patient as I work it out. Thanks!

Out with the old, in with the new......

2009-12-29T22:54:00.000-08:00

We have a few days left of 2009 but I figured I'd better get a jump on this post or it will be a few more weeks before I get to it.

I am looking forward to the new year. I like the idea of wiping the slate clean and starting anew. I don't like to make resolutions but this year I'm making an exception. It will be interesting in a year from now to reflect back and see if I've kept any of them ;) I'm still working on that list so I'll post it once it's polished.

In the meantime, I'm focusing on celebrating 17 years of marriage with my wonderful husband this Saturday! It's hard to believe that 17 years have passed when it feels like yesterday we were barely going on our first date! The time has certainly passed quickly and although we have gone through some pretty difficult times, I wouldn't change it for the world.

I should have known he was a keeper from early on in our relationship when I told him I wanted ten children and he didn't run...LOL! While we're still learning and growing, I am looking forward to the next 17 years and what/who they will bring to us.

Until next time...or next year ;) ................

Forgetting to take care of yourself when you have Special needs children...

2009-12-21T22:37:00.000-08:00

This isn't unique to special needs parenting as many moms put off their own health issues to concentrate on their children's needs. However, I am super guilty of putting off all of my Dr's appts.
I was supposed to see a specialist last year and kept putting it off, canceled an appt due to babysitting issues, etc.
I have three referrals in my purse for different doctors and thankfully I finally took care of one appt. on Friday. It was for a (dun dun duuuun) mammogram! I had never had one and was not looking forward to it because A. I had heard not so fun stories about them and B. I was having one due to a lump so it was extra stressful. It all turned out fine in the end but it was really scary, stressful and full of emotions that I wasn't prepared for. I don't like to be on the patient end of things.
I have countless health problems and I don't have the luxury of spending my days and money at the Dr's office. Yes I realize that if I don't take care of myself, then I won't be around to take care of my children but those thoughts don't cross my mind when I'm just trying to get through each day.
So what's a mom to do? How do you juggle your own health and advocacy for a proper diagnosis when you are busy doing the same for two other children?
One of my New Years resolutions will be making and keeping all of my appts. I know that once I get everything taken care of, I will feel much better so I just need to do it...but I need to find the time...and a babysitter...
Until next time......

Some resources to share....

2009-12-07T22:57:00.000-08:00

In my pursuit of finding some curriculum that will help support Bo and Boo's specific needs, I've stumbled upon a few websites I thought I'd share with the blogging world :)

First I found Tuned Into Learning
This is a fabulous site with a great curriculum set to songs! You can order a free sample CD too and it comes fast! (It focuses on not only academics but also social skills!)

The next one is Move To Learn
It is another site for children with learning disabilities. It even has a free LD evaluation to help parents. The products themselves are pricey but it seems worth it if you can afford it.

The third is a site that I will make into a permanent link on my site. It is called 4 Paws for Ability
It is a wonderful agency that provides service dogs to children with all different disabilities. It is also the first agency to train services dogs for children with FASD. They will also train dogs for more than one child in a family (with a disability). We are very excited about this and are looking into this as an option for our boys!

I hope these sites will help and while I have many more to share, I need to figure out a way to better bundle them. Until next time.............

"In all things, give thanks" 1 Thessalonians 5:18

2009-11-27T19:49:00.000-08:00

I am thankful for my husband, my children, my family and friends. I am thankful for the roof over our heads and for the food in our pantry. I am thankful for my husband's job and the income it brings. I am thankful for my new vacuum (donated by an extremely generous friend). I am thankful for all the people who are sensitive towards our sons' special needs.....

I could go on forever but you get the gist ;)

I hope that everyone has a peaceful and blessed Thanksgiving!

So much to update but no time to do it.....

2009-11-15T22:45:00.000-08:00

Life has a way of just taking hold and not giving you time to take a breath. This has been my life lately. There have been big decisions made, lots of stress, lots of frustration, etc.

I'm not going to give specifics because honestly I just don't have it in me to write it all out right now. I'm tired. I'm hurting both emotionally and physically. I don't have all the answers to the many challenges we are faced with each day and after a while, it just wears me down.

I'm not going to lie and say that my bible is open every day and that I take time out each day to pray uninterrupted. I do pray but not nearly enough. I have found myself praying more in recent months than ever before in my life. I know this is a good thing. I know that God is trying to tell me that I need to rely on Him for strength and answers. I tend to forget that. I tend to call out to Him in ways that are not necessarily "prayerful" if you know what I mean. Example: Boo is screaming at the top of his lungs at 3 in the morning because he has woken up and his engine is turned on and he decides he NEEDS a bowl of cereal right that moment. That is a moment in which God hears me call His name in a less than prayerful manner.

I am working on this. I am realizing each day that I need Him. I have always "known" this but never realized just how much until recently.

As far as my journey as an author is concerned, I am still tossing this idea around. Thanks to my dear friend Heather (Zoey's mom)
I'll keep everyone posted on this but lately I've just been in deep thought about so much. I apologize for not updating more frequently. I am working on it.

Until next time........

Should I start writing a book?

2009-10-24T21:53:00.000-07:00

I have often thought of writing a book on our experiences as parents/foster parents/adoptive parents, special needs parenting, homeschooling special needs children, etc.

Life is a journey. My/our journey has been filled with more twists and turns than a Six Flags roller coaster! I just wouldn't know where to start. I also am unsure of my abilities to captivate readers. While I certainly think our life thus far has been pretty exciting and eventful (at times it resembles a soap opera or a really good Lifetime movie and at others, a Loony Tunes cartoon), I don't know if I could truly convey it all in book form.

I've also had the thought of pulling together different experiences from other parents of special needs and/or fost/adopt children. Maybe a compilation of stories to inspire and encourage others on their journeys. I'm still giving it deep consideration and of course prayer.

Now I could get real crazy and write my autobiography but I'm not sure I want to share THAT much.

Anyhow, what do you all think?

"Life is what happens to you while you're busy making other plans" - John Lennon

2009-10-09T21:56:00.000-07:00

The title of this thread has been resonating a lot with me lately. I try to plan, prepare, organize, etc but while I'm busy doing all those things, life still "happens".
Sometimes it seems life happens faster than I can keep up with it.

The beginning of any school year is an exceptionally busy time for moms. For moms with special needs children, I'm learning, it's a time where you once again face off with new teachers, administrators, therapists, etc. We just finished Boo's IEP last week. I haven't signed yet so I shouldn't say it's finished yet. Overall it went well but of course I worked myself up the week before with a case of the "What if's". I tend to come down with that ailment rather chronically ;)

I knew going into the IEP that I needed to be assertive. I have a difficult time with that mostly due to feelings of intimidation by people who have ego trips (past experience). I was preparing for the worst. I have to say that I absolutely love Boo's teacher. She has been very supportive and understanding. The others at the IEP were mostly supportive as well. They don't fully understand FASD but they are definitely willing to learn. I brought in a few handouts for them to read on FASD's. You can find them here:
http://www.nofas.org/educator/teaching.aspx

One thing that I tried to stress to them about Boo is that his learning will be painfully slow. Repetition is KEY in children (and adults) with FASD. Boo also, as I've mentioned before, has a difficult time understanding what people are telling him. He may appear to understand but he tends to "fake" it rather well. He needs support in this area and will get some support through speech services but I still feel he would benefit from a paraeducator (someone who would shadow Boo and help him throughout the day). The bottom line is money is tight in the district. They are understaffed and their funding has been cut significantly. While this isn't necessarily something that should impact a "Fair and Appropriate Public Education" for my son, it does.

My hope is that someday there is as much advocacy and education for FASD than there is for Autism. FASD's are found in up to one out of every 100 births (conservative estimate)in the US. Many children in schools are being labeled as "emotionally disturbed" when in reality, if their mothers drank alcohol, they could be a victim of fetal alcohol spectrum disorder.

Well, I need to cut this one short because Boo is still awake and it's nearly 11:30pm. Another side effect of FASD is ....sleep disorders! He was almost asleep an hour ago but for some reason, his motor switched back on and it's hard for him to settle. More links to come in my next entry........

Flood of emotions!!!

2009-09-24T21:34:00.000-07:00

I have lots to update about Boo but I'll save it for another post. This one is about Bo. My sweet Bo who hourly comes up to me and says "I love you so much, mommy" gave me the scare of my life yesterday!

I was on the phone when I hear him screaming at the top of his lungs. Banana brings him inside and he's holding his stomach, his eyes are as big as saucers and he's screaming, "I CAN'T BREATHE". He looks TERRIFIED. At this point, I had no idea what happened. I'm trying to keep Bo calm, I'm reaching for the phone (I had hung up on the person I was talking to when this happened), about to call 911....I'm yelling to Hannah 'WHAT HAPPENED WHAT HAPPENED???' She tells me that our swing seat broke and he fell straight on his bottom. I'm still worried that he may have cracked a rib, hurt his back, etc. We finally get him calm. I realize he got the wind knocked out of him. He was simply scared and didn't know WHY he couldn't breathe. **disclaimer: seat broke in half and he fell maybe two feet onto the dirt under the swing.

OK, so no biggie right? Well...had it been one of the other kids, I'm sure I would have panicked at first but then would have quickly recovered from my rush of adrenaline.
With Bo, however, I couldn't stop worrying. During the 5 minutes that all of this was happening, a FLOOD of memories came back to me. I was reliving all those times that we would get a call from the hospital (NICU)telling us to hurry down because they didn't think Bo would make it through the day. I remembered when he was born and I asked them if he was ok and the Dr. said "We're working on him". I remembered the time when we were told that Bo would need surgery on his eyes because his retinas were detaching. I remembered the night my water broke. I was 24 weeks pregnant and the Dr. that night told us that if Bo were born that early, that he could possibly suffer some pretty severe developmental delays.

The guilt that comes along with having a preemie is overwhelming at times. I still wonder what I could have done different to prevent Bo from being born so early. So I think when I heard him scream and saw him walk through our back door unable to take a breath, I just felt a flood of guilt, worry, hurt, frustration, worry, worry and some more worry. Bo is a tough little guy and has overcome some huge hurdles but I still sometimes see him as a frail preemie that almost didn't make it.

His late great grandma prayed so hard for him when he was in the NICU. She would come and visit him and pinch his cheeks ;) She would tell me that she knew he would be ok and that God had big plans for him. I know she's right and I also know that her and Gramps are watching over him from above. Love you, Gram and Gramps!

Ok, I'm going to call it a night but you'll all be happy to know that Bo is doing just fine today. He always tells me "mommy, you're the best mommy in the whole world" and I tell him, "And you're the best Bo"! Night!

First week of Kindergarten....

2009-09-11T22:14:00.000-07:00

What a week this has been for us! Our oldest started high school, Boo started Kindergarten (both on the same day) and Bo and Banana started 4th and 5th grade!
To make it more exciting, all of us have been sick! I had to keep Boo home today because he had a low grade fever.

So far so good with school. Boo seems to be doing fabulous! He is excited about going and his teacher says he's "perfect". I had a feeling he'd do well because he tends to hold it together more under peer pressure situations. He doesn't want to throw a fit in front of other kids he doesn't know well. So this is all great news, right? Eh, not so much. We have been dealing with the fallout of his great efforts at school, at home. He comes home and all of his frustrations he held inside all day come POURING out. He becomes rigid and intolerant of anything that doesn't go his way. He is also showing some separation anxiety again. I went to leave for the store the other night and he would NOT let me go. He followed me out to the car, kicking and screaming. I tried to bring him back inside and explain why he couldn't go with me but he wouldn't listen. Then a nosey Mc. Nosester lady came walking by with her dog and stopped in front of me and Boo and just stared. I suppose she thought I must have been abusing him by the way he was wailing, but I was trying to talk loud enough over Boo so SHE could hear me say "You cannot go to the store with mommy and you HAVE to go back in the house now". I can't tell you HOW much it disturbs me when people STARE at you like you are an abusive parent. If they only knew what we endure. If they only knew HOW MUCH we LOVE our children. If she only knew that I spend a great majority of my day tending to my son's specific challenges and needs in the best way I know how. If she only knew that not only do we NOT SPANK Boo but we just spent THREE months commuting to put him through an intensive and expensive program!!!! These are things I want to shout at people who like to stand in judgment of me. I have been seriously considering putting a sign on our front door that states "A child with FASD lives here. Extreme tantrums are expected daily. If you have concerns please call me or feel free to bring me some coffee and I'll explain FASD to you!!!!"

Ok, enough of my rant. Now onto Bo. I am very excited because Monday we get to go visit the Braille Institute where (hopefully) Bo will be taking some classes! They offer classes like Karate and cooking to children with visual impairments. I have been wanting to put Bo into this program for a while but he's been a little nervous about trying it. I finally decided it's time. He is having a difficult time with his vision lately. As he gets older, he is becoming more and more aware of his limitations. It is extremely frustrating for him. I can't imagine how he must feel sometimes but I can't let my empathy for him hinder his road to independence. I have to challenge him and teach him that while his disability is significant and he does have some limits, he CAN achieve the same level of success in life as everyone else. He may have to work harder at some things but we all have limitations. We all struggle with something. He has so many strengths and gifts. He is very intelligent. He is so loving and caring. He has a great deal of empathy for people who are sick or hurt. I can see him being a teacher or a counselor of some sort. I want him to be happy and find fulfillment in his life.
This is what all parents want and hope for their children.
Well it is late once again and my pillow is calling me. I have been hit with yet another sinus/cold thingy. I am going to try and rest up this weekend so I am fresh for next week. We are still working on getting a routine down. I finally went to the teacher supply store today and bought a pocket chart for Boo's schedule. Now I just have to put it all together! Once it's together, I will post pictures of it.....
'Night!

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

2009-09-01T22:29:00.000-07:00

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......

2009-08-24T22:11:00.000-07:00

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

2009-08-18T21:01:00.000-07:00

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....

2009-08-14T23:14:00.000-07:00

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.

2009-07-31T21:36:00.000-07:00

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!

2009-07-21T21:08:00.000-07:00

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!!!!!!

2009-07-14T21:52:00.000-07:00

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.

Heaven has one more angel.....

2009-06-27T21:31:00.000-07:00

Pablo has left this world today. I didn't know him or his family and yet his story touched my life.
Blogs are like portals into other people's lives. I am forever changed by the people I've "met" through the blog-o-sphere.

There are so many children out there battling childhood cancer. It is a demon that takes hold of their little bodies. We all have our own battles. Tonight I ask that if you are reading this, that you take a moment to pray for not only Pablo's family but for ALL the parents and children out there who are either in the thick of the fight or just learning of their diagnosis.

Also, please visit Zoey's site (her button is on my blog). She is a little warrior who has just finished her last round of chemo. Her mother, Heather, is training for the Nike Women's Marathon. She will be running on behalf of Zoey and all the other little warriors who are fighting for their lives. Please consider sponsoring her if you are able. Once you click on Zoey's button, you will see Heather's fundraising link. God bless! Remember to hug you little ones tight tonight!

Pablo!

2009-06-25T23:18:00.000-07:00

Just a quick update to ask you all to pray for peace and light for a mighty fighter, Pablo!
His link is in my blog roll....please visit his site. He is an amazing little guy who needs prayers of peace right now. He is going home to spend his final days with his brother and his mommy and daddy.

I am truly speechless right now. I don't personally know this family but have followed their blog for a while now. They are just an amazing family and Pablo has touched my life forever. Please pray.

Would you like some cheese with my whine?

2009-06-07T22:20:00.000-07:00

I have purposely not posted for a while because I knew I would just whine and complain about how HARD the last few weeks have been. However, I figured I might as well just update (whine and all). This is what blogs are all about, right? (Sharing the good with the difficult).

My emotions are all over the map right now. We are trying to wrap up the school year, our oldest is graduating 8th grade next week, and then there is Boo's school! Can I just once again say that commuting every day stinks big time!!! People are rude, inconsiderate and way too aggressive on the freeways! While I'm at it, WHY can't they come up with some sort of plan to fix that blasted stretch between the 105 and the 10 (on the 405). It's ALWAYS a snail's pace!

How is the program going you ask? Well, let me tell you.....I don't know. There are moments that I just want to run screaming from that place and then other moments where I realize that I need to give it more time. I have to realize that I'm not going to agree with everything they say or do there. I also am trying to accept the fact that my son is not exactly like the rest of the kiddos in the program. He is so darn complicated! All of the professionals up there agree that Boo does not fit one specific diagnosis. He is such a mixture of FASD, Autism and ADHD (with anxiety sprinkled in there and some sort of mental health disorder). I am also feeling like they don't "get" me or Boo 100% yet. I'm getting the vibe that they think I'm overly-attached to Boo. The fact of the matter is, I've had to act as his frontal lobe for so long and as his main "translator", that it's hard to just hand him over and "trust" that they are going to figure him out. The other difficult piece to all of this is that the most brilliant mind in FASD research is one floor below Boo! She is so close to us and yet she is not affiliated with this program. I want to figure out how I can gently ask them to maybe "consult" with her....but I don't want to offend them. (This is a team of psychiatrists/psychologists and other therapists).

Here is the positive side of things:
They are really finding the "holes" in Boo's development. He (and this is so typical for kids with FASD), can look fabulous in one area of speech for instance and yet he has horrible word recall. So while he is able to string a beautiful sentence together, he can't always "access" the right word or phrase he's looking for :( He has so many learning challenges and spotty development that it's such a blessing that he is in this program where they basically assess every portion of his development! I am sooooo very grateful that he is being watched so carefully. When we leave this program, we will know EXACTLY where Boo needs help. We will know which areas of his development need intense therapy and which are on track. This wouldn't happen (and hasn't happened) with all the other assessments and professionals he's seen thus far.

In the end, I am hoping to take from this program that which will benefit Boo and discard anything that doesn't seem right to us.

I also want to add that Boo's teachers are AMAZING. They are so invested in all of these kids that are there. They have an unlimited supply of patience and are just bursting with energy! You can see that they are really genuinely there for the kids.

For all the whining and complaining I did tonight, I really am grateful for this opportunity for Boo. I am just tired, sick, and slowly beginning to realize that no matter how much experience or training someone has, it's still not enough to truly give us solid answers about Boo. This makes me sad. This makes it difficult to just keep going...and yet I do....because of Boo :) (that was not intentional..lol)

I'm off to bed. That doggone flip flappin alarm clock starts ringing way too soon after my head hits the pillow. Thanks for reading!!!

First week down, 11 more to go!

2009-05-23T12:48:00.000-07:00

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

2009-05-20T20:56:00.000-07:00

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......

2009-05-18T20:45:00.000-07:00

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!!!!!

2009-05-14T22:17:00.000-07:00

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

2009-05-04T22:39:00.000-07:00

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!!!!

2009-04-25T21:27:00.000-07:00

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)

2009-04-11T10:19:00.000-07:00

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

2009-03-30T22:32:00.000-07:00

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!

"If you've met one child with Autism, you've met one child with Autism"

2009-03-01T22:28:00.000-08:00

I frequently post on a special needs board where there are many mothers of children with all different challenges.
Many of these children are on the spectrum. However, while many of them have Autism and share some basic characteristics of ASD, the mothers there realize that no two children with Autism are alike.
Someone recently told me that each child with Autism has their own "recipe". I thought this was a brilliant way to describe it.
There are many professionals who have dismissed parent's concerns for their child because the child's challenges didn't meet the stereotypical case of Autism.
I can't tell you how much this frustrates me.
Here are some "myths" about Autism that I've heard from pediatricians, neurologists and psychologists which turned out all to be false. They are not fully educated in diagnosing Autism. If you ever here these things, run! Go find a developmental ped. or a psychiatrist/psychologist SPECIALIZING in diagnosing Autism.

Myth #1 ALL Children with Autism don't make eye contact
Myth # 2 ALL Children with Autism aren't socially engaging
Myth #3 ALL Children with Autism are savants
Myth #4 ALL Children with Autism can't play make believe or pretend
Myth #5 All Children with Autism can't hold it together in social settings without melting down

The thing is, Autism is a spectrum disorder. This means there is a wide range of behaviors/capabilities/etc. No two children with Autism are the same. Many have sensory issues, behavioral issues, attention issues, communication issues, social issues, etc but none of these things necessarily look the same in all children.

Here is a link to a great site with TONS of info on Autism and neurodiversity :) Enjoy!
http://www.neurodiversity.com/main.html

Happy Valentine's Day!!

2009-02-13T22:16:00.000-08:00

John 15:12-13, “My command is this: Love each other as I have loved you. Greater love has no one than this, that he lay down his life for his friends.” (NIV)

Forgive me for not posting sooner. Life just seems to take hold sometimes. Last week we made the decision to homeschool Bo and our daughter "Banana". Fortunately, Bo will continue to receive VI services as well as OT services. There is even a possibility that his current VI teacher will be able to continue on with him. We also ironically are receiving more services/materials as a result of our choice. Although it's a lot of work, it's well worth it. The kids are happy to be back home and have already fallen into a pretty good routine. The curriculum they are using is advanced but the kids are already welcoming the challenge!

Boo has had a pretty good couple of weeks. Since stopping the last medication, we have seen a decrease in his rages. We have also increased a different medication and that seems to be calming him too. The funny thing is, I don't think our neighbors would agree that things have been any calmer around here as Boo still vocalizes his frustration with ear piercing screams! He still has to have things a certain way and is not good with quick transitions but for the very first time last week, he took a deep breath and told me he wanted to try to calm down. Praise God for small steps forward!
I'm also going to be calling the special program this week to find out if there has been any progress in getting a start date for Boo. I pray it's soon but I am also not looking forward to the commute every day. (Still, it's a small inconvenience for getting Boo the help he so desperately needs).

I'm off to bed but will be back soon with some more info on Autism and FASD.......

We got bumped to the top of the waiting list!!!!!

2009-01-26T22:26:00.000-08:00

I called up to check on Boo's status today and found out that because of his extreme challenges, he was put on the top of the list. He's next in line for a spot! This is truly a miracle for us! There is still no guarantee of how long we'll have to wait but at least we know he's next.
The person who runs the program told me that Dr. S really stressed the importance of Boo getting into this program. I am so grateful for our Dr. He is truly amazing!

Now onto the not so good news....Boo had his appt with Dr. S last week. It seems that he may be suffering a side effect from one of his meds so we need to run some bloodwork and make sure it's not affecting his endocrine system. If the test comes back positive, we will have to stop the Risperdal immediately. This could bring on some more intense behavior.
In the meantime, we cannot try any other medication so we're in a bit of a holding pattern.

This particular appt. also gave Dr. S more insight into Boo. He spent over an hour with us and much of that time was playing or talking to Boo. He reassured me that much of Boo's behaviors are from his Autism. Unfortunately, there are other behaviors that could be the beginning signs of something even more serious.

There are days when Boo's behavior is so out of control that I seriously contemplate him needing hospitalization and then there are days like today that are challenging but overall not too bad.

Overall, I have faith that God will light a path for us. I pray that Boo can get into this program soon and that the logistics of how it will all work will fall into place.

"Faith is being sure if what we hope for and certain of what we do not see."~Hebrews 11:1

UCLA appt today!!

2009-01-21T13:52:00.000-08:00

We go see Dr. S. at 4pm today....which means I'll be home around 10pm tonight. I love Dr. S and wouldn't trade him for the world, but man, I hate these visits!
I am going by myself with Boo this time so Rich can stay home with the other kids. It's gonna be a loonnnnggggg afternoon!
I am trying to get my notes ready so I can go prepared. Wish us luck!

We finally heard back from Dr. S

2009-01-15T22:10:00.000-08:00

We had been playing phone tag with Dr. S for the last couple of weeks. I finally got to have quite a long conversation with him the other night. (I just have to add that he is truly an exceptional Dr. He spoke with me for 35 minutes on the phone about Boo).

We are cutting back on one of his meds to see if that will decrease his paranoia. We also have an appt to go see Dr. S next week at which point we'll discuss where we go from here.

He feels that Boo could be showing the beginning signs of bipolar disorder (this is not a shock as we've discussed the possibility in the past) or even possibly schizophrenia. The last possibility is that because Boo has so many different challenges, he may not respond to medication in the same way *most* people with autism, adhd, gad, fae or bipolar may respond.

When we first discussed the use of medication, I was told it was a matter of finding the *right* medication. Some kids do great on one med, while others may not respond at all. Usually after trying a few, you find the right one and start seeing an improvement in behavior/symptoms.
So far, after 4 different meds we have seen no improvement and in fact, we've seen symptoms worsen. Dr. S is trying to figure out if the symptoms that have increased are due to the medication and if so, was the medication working on one symptom while worsening another. Or , is the medication doing nothing but Boo's symptoms are intensifying despite the meds.
For example, when we tried Ritalin, we saw an increase in his anger and rigidity. I thought it was because the medication was NOT working when in fact it was the opposite. The Ritalin gave him the ability to focus more but in giving him that ability it gave way to "hyperfocusing" and more of an Obsessive Compulsive behavior. So while it helps one symptom, it can worsen another.

Despite the unsuccessful attempts with medication, I am hopeful that the right treatment is out there. For me, half the battle was getting a Dr. to hear what I had to say and see with his own eyes what we see day in and day out with Boo. We finally have someone who sees the severity of the situation and is committed to helping us and for that, I am truly grateful.

SCREAMS ...

2009-01-12T22:28:00.000-08:00

I was reading one of my favorite websites (FAS resources) and found this bit of info. I thought I would share because it's simple bullet points that seem to really lay out solid tips for parents of FAS kids.

Structure with daily routine, with simple concrete rules

Cues (again and again and again), can be verbal, audio, visual, whatever works

Role models (family & TV), show them the proper way to act, children mimic us

Environment with low sensory stimulation (small classroooms, not too much clutter)

Attitude of others, understanding that behavior is neurological, not willful misconduct

Medications, vitamin supplements and healthy diet are quite helpful

Supervision - 24/7 (lack of impulse control and poor judgment at all ages)

This was written by Teresa Kellerman, a mother and advocate of people living with FAS/FAE.
Here is a link to the full article: http://www.come-over.to/FAS/ScreamsArticle.htm

It's official....we're on the waiting list!!!

2009-01-08T21:49:00.000-08:00

Happy New Year to everyone! I pray that this coming year brings hope and peace to everyone!

I am hopeful today because we have been officially put on the waiting list for a special program up at UCLA for Boo! It is a partial hospitalization program. He would go 5 days a week for 8 hours a day! It is the only partial hospitalization program for little ones in this area.

The downside is that it is a huge commute every day, there is up to a two year waiting list and our insurance may not cover the whole thing. (insert prayer request here).

As I've mentioned before, Boo is extremely complicated. I keep getting asked "Well why not just put him back in that ED preschool program while you're waiting...if things are really that bad with Boo". The thing is, once again, an ED preschool program like the one he was in focuses on behavioral modification. The main focus is to change negative/aggressive behavior. While Boo definitely needs to change his behavior, he needs the right tools to learn how to do this and we need to be treating the underlying cause of these behaviors. Let me give an analogy. If you're in a boat and there's a leak, do you start bailing out the water or do you try to fix the root of the problem which is the hole in the boat? Do you fix the hole with a band aid or do you find something that will "work"?
This is the boat we're in. Unfortunately, there are many many holes in Boo's boat and everyone keeps trying to hand us band aids to fix them!

I refuse to give up on finding the right treatment for Boo. I am committed to bringing awareness to these complicated children. We may wait a long time for a spot in the program at UCLA but in the meantime, we continue to take it one day at a time. There are no magic quick fixes.
We have changed some meds around but haven't seen much of a difference. I also have finally finished The Explosive Child.

It was an excellent book and I am confident it will help us down the road. For now, we can only use bits and pieces of this book. Boo's ability to listen to my suggestions and think for himself are very limited.

My goal right now is to find a way to reduce his rages. The tiniest things set him off. A typical day for us looks like this:

12am - Boo wakes up, comes into bed with us and begins rocking back and forth hitting me and Rich with his elbow or head (unintentionally).

12:30am- Cries out in his sleep and inadvertently punches Rich.

1am- Snoring, grinding teeth, twitching, yelling.....

2am-6:30am- kicking, snoring, rocking, yelling, and sometimes wakes up because his pull up has leaked (fun times!)

6:30am- He's up! Goes into Bo's room and begins jumping on his bed asking Bo to help him play a video game. Bo says no, he needs to get ready for school. Boo screams at Bo and I jump up because I know something is going to get thrown.

7am-9am- We need to get kids ready for school and out the door. Boo wants something to eat but doesn't know what he wants. He throws himself down on the ground and begins an all out tantrum because I don't have time to make him pancakes right that second. He then screams and hits me. I tell him "no hitting" and wind up holding him, while trying to redirect him. (did I mention he has OCD?) He takes an interest in a toy and I say it's time to go. He sits staring at his toy. I tell him 10 more times it's time to leave. Kids are in the car. Boo is not budging. I tell him I'll have to carry him to the car and he screams no and runs out the door and down the sidewalk. He finally gets in the car and starts hitting his brother for no reason .........we get to school and he has to hear his brother and sister say goodbye to him at least two times or he FREAKS OUT.

9am-2pm Lots of screaming, demands, kicking, throwing, hitting etc. I must keep him engaged in an activity constantly or he becomes destructive. We try reading books and doing some "school" but his attention is very limited. We can't treat his ADHD with stimulants because it exasperbates his rage. He tries to tell me what he wants to do but has a hard time with articulation.

2pm-Rich gets home pick up the kids from school, play referree, keep Boo away from the kids so they can get their homework done and have downtime. Boo gets frustrated that he can't play a certain game or watch a certain show and melts down. Raging begins again (for the average of the 5th time that day).

5-9pm Raging, throwing, kicking, frustration...................................then sleep

9pm-12am- snoring, twitching, kicking yelling, crying in his sleep :(

Once again, I feel the need to reiterate that we have tried all the conventional parenting techniques that worked very well on our other three children. Boo's brain is damaged. It is not wired the way an average person's brain is wired.
The part of his brain that regulates his emotions, gives him reasoning skills and impulse control is just not developed. Plus, he has Autism and anxiety and possibly bipolar disorder. All the time outs in the world will not "teach" him to change his behavior.

I know I've repeated several things tonight in this post but I feel it necessary. People need to understand that my child is not a brat. He's not "getting his way". Believe me, if he had a choice, "his way", would include having a normal childhood and being able to feel happy the majority of the time instead of rage and anger. I would guess that "his way" would NOT include wanting to die because he's sick of feeling angry :( (**disclaimer....yes his psychiatrist is fully aware of these things).

Thanks again for reading this and please keep Boo in your prayers.....until next time......

OY Vey, Another day!

2008-12-30T21:53:00.000-08:00

We've been going through an exceptionally difficult time with Boo lately. He seems to be reacting poorly to the increase in his meds.
The medication that was supposed to decrease his anxiety has increased it and turned it into paranoia instead of just plain ol anxiety.

I have a call into Dr. S and hopefully will hear back from him tomorrow.

Please stay tuned for updates.....

A very Merry Christmas to all!!!!!

2008-12-23T21:17:00.001-08:00

To anyone who visits my blog, I just want to wish you all a very Merry Christmas and a healthy and peaceful New Year!!!!

We have had our challenges this year but it only takes a minute to sit back and think of how blessed we are!

We have a roof over our heads, food in our fridge, a job and 4 beautiful children! I am so grateful for my husband and the hard work he does. He is my rock!

I pray this next year is filled with healing for my sons and peace for our family. I pray this for all parents with special needs children! May God bless and keep you all! Merry Merry Christmas!!!

If you don't laugh, you'll cry....and we did both!

2008-12-11T21:16:00.000-08:00

So, Boo had an appt. with his Dr. up at UCLA yesterday. I had my questions and my notes ready. I packed a small snack for Boo and Rich had the other kids covered as far as dinner and childcare.
We were on the road by 3:30 for his 5pm appt. I thought we were doing really well.
The traffic came to a standstill about 3 miles from our exit. Thankfully, Boo was asleep and didn't have to endure the 2 hour drive! That's right! It took us 2 hours to get there. We were 3o minutes late and I was a basket case!
I pulled up to the loading zone and ran in to let them know we were there but still had to park. When I walked in, the receptionist said "Don't worry....see all these people here....they are all waiting for Dr. S too!"
We parked the car and Boo informed us that he had an accident while he was sleeping. He was very upset and did not want anyone to see him nor did he want to wear wet pants! I assured him I must have something in the trunk (remembering I had put a box for Goodwill back there). Well, it turns out they were all my clothes! Then I had the brilliant idea to cut the lining out of his wet pants (They were double sided). All I had to use for a tool were Rich's keys. All I succeeded in doing was ripping the inside of the pants and making them more difficult to wear! I had to think quick and came up with the idea to have him put a pair of my pj bottoms on under his wet pants so he wouldn't feel the wet. He agreed to this and off we went to see Dr. S.
When we walked into the office, I could tell by the expressions on the other parent's faces that they had been waiting a long time! I asked one mother what time her appt was and she said it was at 3! A few other parents chimed in with their appt times and apparently there were 5 patients ahead of us. I quickly struck up a conversation with a mom who's son was trying to get Boo to play with him. Boo took to the corner and decided to hiss at all the other kids who came close to him. Ironically, all of these children were a lot like Boo. I can spot Autism and ADHD a mile away now!
As the mom of the little boy and I got to talking, another family joined the conversation. I had shared that we came from LB to see Dr. S. These families came from Lancaster and Valencia! We all agreed that even though we wait for hours to see Dr. S, it's worth it. The reason he is always late for his appts, is because he takes as much time with his patients as they need. He also works at the psychiatric hospital adjacent to his office so he is usually there when he is paged that he has patients to see.
We were the last people to see Dr. S. He called us back at 8pm. He spent an hour and a half with us discussing Boo. We discussed recent studies and findings on medication. We discussed the multiple diagnoses that Boo has. He believes that Boo is very distressed. Boo's little brain has so much damage from so many different things that it's nearly impossible to sort out what percentage of his challenges come from which diagnosis. He is truly a puzzle!
We were advised to get another pediatric neuro and also a ped. cardiologist. Boo had an enlarged heart as a baby and now that he is on some pretty strong meds, he needs to be followed. We need to see the Neuro to make sure he isn't having seizure activity. 10% of children with autism, have seizures.
The last thing Dr. S said to me as I was walking out was "I'm sorry we haven't been more successful at helping Boo so far". I just wanted to lay down on that floor and bawl like a baby.
I have one of the best pediatric psychiatrists around treating my son and even HE can't help him.
We were certain that we would see an improvement in Boo by now. I have an amazing little boy under all the layers of diagnoses that just wants to live and love but he can't. Children are supposed to be carefree! They are supposed to play and learn and make friends. My Boo spends his days in a rigid state. He is full of fear and anger. He is obsessive and impulsive and he hates himself for that.
So tonight we try a new medication. This one is supposed to help him sleep. It is a heart medication that lowers blood pressure but it is used as a sedative. All we can do is take it one moment at a time. Oh and by the way....we got home at 10pm last night.

(I have not forgotten my book promise. It's coming soon!)

Quick Update...

2008-12-05T21:49:00.000-08:00

I was supposed to update sooner so I apologize for anyone who has been waiting for my feedback from The Explosive Child. I haven't finished it yet but am almost done. There is tons of great info in this book and it's almost too much to take in right away.
We've also had a busy week.
I'll be back at some point this weekend to give a proper update :)

(In the meantime, please check out my dear friend's blog raisingreid.blogspot.com This family needs prayer right now for their little guy, Reid, who has just undergone heart surgery and may be facing another one soon)

The Explosive Child

2008-11-24T22:06:00.000-08:00

I finally went out and bought the book "The Explosive Child" by Ross W Greene, Ph.D. .
It has been recommended to me by several parents who are raising children with a variety of challenges. The premise of the book is that "Children do well if they can".
It focuses less on reward and punishment and more on communication and collaborative problem-solving (these are skills that are missing in children with ADHD, FASD, ASD and other diagnoses.). It is a different approach to parenting but when you think of your child as having organic brain damage or even just emotionally developmentally delayed then it makes sense that the conventional parenting techniques used in neurologically typical children wouldn't work for these children. You wouldn't expect a 2 year old to sit down and write their ABC's and then punish them if they couldn't perform that task , expecting that the punishment would, in time, teach them HOW to write their ABC's.
Here is a link to the Center for Collaborative Problem Solving
http://www.ccps.info/

This website has more info on understanding and implementing the Collaborative Problem Solving approach (also known as CPS).

I will be adding more posts as I continue to read this book and start on our journey of implementing this new parenting technique. Stay tuned for more info........

ETA: Here is the Caregiver handout for the CPS model. It really sums everything up!

From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I. Psalm 61:2

2008-11-20T23:05:00.000-08:00

The title sums it up perfectly. I have been reading, researching, questioning, etc., everything I can get my hands on lately that pertains to Boo's challenges. I don't feel any closer to the question that haunts me every day which is "How can I help this child?".
I am beaten down. I'm exhausted.

The truth is I can't do this alone. I need the type of help that can only come from the One who has all the answers; The One who loves Boo even more than I do.

Lord Jesus Christ, Good Shepherd of the sheep, you gather the lambs in your arms and carry them in your bosom: We commend to your loving care this child. Relieve her/his pain, guard her/him from all danger, restore to her/him your gifts of gladness and strength, and raise this child up to a life of service to you. Hear us, we pray, for you dear Name's sake. Amen.

Homeschooling it is.....for now....

2008-11-15T21:14:00.000-08:00

I made the executive decision to pull Boo out of preschool this week. Last week he was having some problems on the bus. He took the bus for two days and both of those days were threatened by an older kid. Apparently the school district does not have separate busses for the preschoolers so they are mixed in with some older children. He also was having some problems in his class. His needs would be best met in a class where some "average" children were used to model good behavior.
Boo learns best by example. He was extremely stressed in his class because all of the children were behaviorally challenged. Ironically he was the best behaved in his class but it was due mostly to fear and anxiety.
My job is to find Boo the best possible "program". He needs intense physical and occupational therapy. He also needs speech therapy. He needs extreme structure and lots of visual cues. He will benefit from Pecs cards and from one on one learning.
All of these things have been recommended by several professionals Boo has seen. The school district is aware of Boo's needs and of his Dr's recommendations. Unfortunately, they can only offer him what they have available. (We are not in a position to hire an attorney or an advocate to fight this battle).
Right now, we are going to homeschool him. We are also looking into a few research projects that Boo may be able to take part in. He is also on a waiting list for a special partial day program at UCLA.
I am always amazed by the different hats parents are required to wear when they are parenting a special needs child. So far I have had to be an advocate, diagnostician, nurse, researcher, therapist, secretary, teacher, etc. The list just continues to grow.
As a child, I had complete trust and faith in Dr's. I believed they could diagnose and heal just about anything. I believed this was true for any Dr. that was able to earn the label "MD". My faith has been shattered time and time again in the last several years.
The first several months after Boo started having his severe rages, I would tell his pediatrician over and over that we were really struggling with him. The Dr. kept giving me handouts on handling toddler tantrums. He told me I just needed to be more consistant with him. He never once mentioned the possibility of Fetal Alcohol Effects. (He was aware of Boo's prenatal drug and alcohol exposure) I was not describing typical tantrums. I was describing hours and hours of "raging". I was describing Boo throwing himself down on the hard cement because his clothes were bothering him. I was talking about Boo banging his head on the ground on purpose when he was mad and waking up screaming several times a night. I was a frazzled mom who was saying "Something is NOT right". Have you ever had one of those dreams where you try your hardest to scream and nothing comes out? That is exactly how I feel much of the time.
I just want to end this with one suggestion. The next time you're out in public and you see a child tantruming and a mother who looks like she's about to cry, instead of judging her, pray for her! It is not always "bad parenting" that causes a child to meltdown. I don't know how many times I've heard "What your child needs is a spanking". Yes, thank you. My child does need a spanking. Why didn't I think of that. If I spank him, then maybe his brain damage will just disappear...or maybe his autism will be cured....or he will all of a sudden be able to tell his colors apart....or not run in the street for no reason........
Parenting is a journey, but parenting a special needs child is an Indiana Jones adventure!

So you suspect FASD, now what?

2008-11-09T19:36:00.000-08:00

"The greatest obstacle that our kids must overcome is the chronic frustration due to unrealistic expectations." - Dr. Calvin Sumner, in a conversation with Teresa Kellerman.

Have you ever heard of the term "organic brain damage"? It's something I'm becoming increasingly interested in learning about. Boo has "organic brain damage". This means he was born with it. His brain did not form in the same way an average person's brain forms.

"Individuals with FASD often have symptoms or behavior issues that are a direct result of damage to the prefrontal cortex, which is the part of the brain that controls “executive functions.”" from Fasstar.com

Executive functions include:

inhibition
problem solving
sexual urges
planning
time perception
internal ordering
working memory
self-monitoring
verbal self-regulation
motor control
regulation of emotion
motivation
judgment

So when you think of a child with FASD, you must think brain damage or “static encephalopathy” which means brain damage that is permanent and unchanging.

A child with FASD may be capable of making good choices one minute and then "forgetting the rules" the next minute. They may be able to "hold it together" for authority figures or in instances when they are fearful or nervous. This does not mean that they have the "capabilities" to hold it together when they "choose". This is a common misconception.
Children with FASD often do not make the connection between action and consequence (which is why traditional behavior mod doesnt always work well for them). They are impulsive by nature and remember, even though they may repond to a consequence one time does not mean they will retain that information or learn from their "mistake". Confused yet?

Ok, so HOW do we teach these children? What DOES work for them? Well, remember that no two children are the same. As a parent, you must get to know your child first and then adopt a plan. Here is something I found to be simple yet helpful.

8 Magic Keys:
Developing Successful Interventions for Students with FAS

by Deb Evensen and Jan Lutke

1. Concrete

Students with FAS do well when parents and educators talk in concrete terms, don’t use words with double meanings, idioms, etc. Because their social-emotional understanding is far below their chronological age, it helps to "think younger" when providing assistance, giving instructions, etc.

2. Consistency

Because of the difficulty students with FAS experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. Teachers and parents can coordinate with each other to use the same words for key phases and oral directions.

3. Repetition

Students with FAS have chronic short term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to long term memory, it may simply need to be re-taught and re-taught.

4. Routine

Stable routines that don’t change from day to day will make it easier for students with FAS to know what to expect next and decrease their anxiety, enabling them to learn.

5. Simplicity

Remember to Keep it Short and Sweet (KISS method). Students with FAS are easily over-stimulated, leading to "shutdown" at which point no more information can be assimilated. Therefore, a simple environment is the foundation for an effective school program.

6. Specific

Say exactly what you mean. Remember that students with FAS have difficulty with abstractions, generalization, and not being able to "fill in the blanks" when given a direction. Tell them step by step what to do, developing appropriate habit patterns.

7. Structure

Structure is the "glue" that makes the world make sense for a student with FAS. If this glue is taken away, the walls fall down! A student with FAS achieves and is successful because their world provides the appropriate structure as a permanent foundation.

8. Supervision

Because of their cognitive challenges, students with FAS bring a naivete to daily life situations. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior.
When a situation with a student with FAS is confusing and the intervention is not working, then:

Stop Action!
Observe.
Listen carefully to find out where he/she is stuck.
Ask: What is hard? What would help?

I don't have the answers. I'm just beginning this journey myself. Boo has seen so many professionals who have glossed over the fact that he was drug and alcohol exposed. They attributed his behavior and emotional challenges to genetics or our parenting. The sad fact is that there are no hard markers for Fetal Alcohol Effects or Alcohol Related Neurodevelopmental Delays. 80% of people affected by FASD have no physical features of the disease. It is their brain that is affected. It is estimated that 70-85% of inmates need substance abuse treatment. It is also estimated that 61% of adolescents with FASD have been in trouble with the law. These statistics are both shocking and terrifying. FASD is real. We need more education out there and we need more funding for research. Our prisons are full of men and women who started out as innocent children born to women who drank alcohol and did drugs. Who is going to stop this cycle?

Fetal Alcohol Spectrum Disorders

2008-11-06T21:25:00.000-08:00

"Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications."

"FASD is the leading known preventable cause of mental retardation and birth defects."

From the National Organization on Fetal Alcohol Syndrome.

~~Today I had the opportunity to speak to a leading researcher on FASD at the University of San Diego. This extremely busy man took time out of his day to return the call of an exhausted and frustrated mom. Dr. Ed Riley has done extensive research on FASD and it's effects on the brain. He is in the trenches, so to speak, with parents, educators, neurologists, and other psychologists like himself who are working tirelessly to educate people on the irreparable damage caused by prenatal drinking.
My story was no different than most. He listened intently while I told him all the diagnoses we've received so far with Boo. He assured me that everything I had told him about Boo was right in line with ARND (Alcohol Related Neurodevelopmental Disorder). It is something that is not easily diagnosed by professionals. It is not a clinical diagnosis (yet).
Boo's best hope right now is getting intervention services for his Autism and ADHD diagnosis. Unfortunately, ASD is where the money is right now. FASD, while it affects 1 in 100 births is not something that is very well known. Most children with FASD are not diagnosed properly. They are labeled as having ADHD or even Conduct Disorder and everything in between. 80% of children with FASD have little to no physical anomalies and yet their central nervous system has been forever damaged. Unlike other disorders, FASD cannot be cured. It is organic brain damage and will stay with a child for the rest of their lives impacting everything from their education to their relationships with others. Many people with FASD are unable to leave home when they are 18. They are unable to function as an adult. Their behavior and emotional immaturity often get them into trouble with the law.
There may not be a cure but there is a prevention. There is no known amount of alcohol that is safe during pregnancy. Drinking can cause lifelong brain damage and my son is walking proof of that fact!

More to come on treatment for FASD...........

I found this poem today.....

2008-11-01T20:59:00.000-07:00

Heaven’s Very Special Child

A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"

- Author Unknown

I have often been asked "Do you feel resentment towards Boo's bio-mother for her choices during her pregnancy ie: alcohol, drugs, etc?" My answer is always a simple "No". I remember leaving the hospital the night we got Boo. I cried the whole way home. The one thing that kept going through my head was how lucky I was to be bringing this beautiful baby home. This poor mama just gave birth to her son and will never feel the joy of taking him home. She will go home empty handed and empty hearted...back to the streets. She has no one waiting to shower her with baby clothes and diapers. She will return to her life that is filled with pain. She is a product of the failing system. She was a broken person with a mental illness and a terrible addiction. She was unable to provide for herself let alone her child. Was I angry with her? NO. My heart ached for her. I thank God every day that He picked us to be Boo's parents. I pray for Boo's bio mom often and am eternally grateful to her for bringing our son into the world.

Why I created this blog...

2008-10-28T21:10:00.000-07:00

It all started shortly after Rich and I were married. I became ill. I was unable to leave our house. I was weak, tired and nauseas all the time. I stopped eating. My weight dropped down to 97 lbs. I was a twig (really I was..lol). The only thing I lived on for three months was saltine crackers and tiny bites of food here and there.
We didn't have health insurance and since I wasn't working, money was nearly non existent.
Several months passed and I was finally able to get to a Dr. I was diagnosed with anorexia, depression, anxiety and colitis.
I was prescribed antidepressants (that saved my life) and went to therapy.
It was then I realized how uneducated people were about mental health issues. My friends didn't understand why I couldn't leave the house. They didn't understand why I didn't just "get over it". I was unable. I was paralyzed with anxiety and depression.

I slowly began to heal and vowed to be the poster child for "healing from depression".

Fast forward to a year later. We were expecting our first child. I was elated. The only thing I ever wanted in life was to be a mommy! We were blessed with a perfect little angel. Four years later, we were blessed yet again with another perfect angel. We had our two little girls and all was right with the world. When our second daughter was just five months old, we got a BIG surprise. I was pregnant ....AGAIN....
The pregnancy was rough. I started having contractions when I was 18 weeks along. When I was 24 weeks, my water broke spontaneously.
I stayed in the hospital for 10 days but Bo couldn't wait any longer. He was delivered on Feb 23rd, 2000. He weighed 1 pound 14 ozs and was 13 inches long. He was a fighter. The night he was born, we had him baptized and given his last rites. The Dr. told us "We're working on him". It was the scariest night of our lives.
He spent 3 and a half long months in the NICU. Those three months consisted of us getting several phone calls that went something like this..."We need you to get down here right away....Bo may not make it through the night".
Bo was stricken with a preemie disease called Necrotizing Enterocolitis three time. Most preemies that get this disease ONCE, do not make it. He was truly a miracle.
When Bo was finally taken off of his respirator and able to breathe on his own, we were hit with the news that he had Retinopathy of Prematurity. He had an advanced stage in both eyes. They couldn't guarantee that he would have any sight. At this point, it looked like he would lose all vision in both eyes.
They performed laser surgery on both eyes. It was still too soon to tell the extent of the damage.
Meanwhile, he was still not feeding well. He had terrible reflux but my mommy instinct told me there was something more going on.
He was released from the hospital on June 13th! We took him home thinking the worst was behind us. Boy, were we in for a surprise...
Bo had a follow up eye appt. one week after coming home. We were told his retina in his left eye was detaching and the only hope for saving his sight was a specialist up at UCLA who was one of two Dr's in the US that performed this particular surgery called a Virtrectomy.
We were up at UCLA the next day prepping Bo for yet another surgery. He came through better than expected. His Dr. told us his surgery was "newsworthy". He still couldn't guarantee the sight that Bo would have but was optimistic.
We went home and began life with a special needs baby, a 15 month old toddler and a four year old preschooler.
The whole first year was a bit of a blur. Bo had physical and occupational therapy. He was developmentally delayed and we spent more time at the Dr's office than at home.
Bo had a rough time feeding from the beginning but since he had been home, it had gotten worse. He was gaining weight but he was also projectile vomiting after every feed. We had seen several GI dr's who assured us he did not have a narrowing from his earlier battle with NEC. I was not convinced. We were at the ER nearly once a month for the first year with Bo vomiting bile. I insisted something was wrong and finally found a GI dr. who believed me. He sent us to a specialist at CHOC hospital who, after taking one look at a recent upper GI, admitted Bo into the hospital for a small bowel resection. Bo did have a narrowing in his small intestine that was hard to see on the film. The surgeon spotted it right away and wouldn't let us leave. He said Bo's intestine could have "burst".
Bo went through a very long and painful surgery to repair his intestine. He was sent home 9 days later and recovered quickly!
Every day of Bo's life has been a blessing and a challenge for him and us. He is burdened with the fact that he has poor eyesight. He is legally blind. He has cortical visual impairment which is basically a "short" from his brain to his optic nerve. There are days when he sees better than others. He also has Sensory Processing Disorder. He has a difficult time being in crowds or filtering noise/lights/etc. He also suffers some residual effects of his bowel resection. His tummy is sensitive and has been hospitalized a few times with stomach viruses and suspected twisted intestines. He is in school and is learning braille (in case he needs it in the future). Bo has a 10x's greater chance than an average sighted person to suffer a detached retina. He cannot enjoy jerky rides and has to be careful not to get hit in the head with a ball at school. He has had a few bleeds in his eyes in the last year that have sent us running back to UCLA to make sure he's not losing his retina.
He doesn't complain. He is a loving little guy who always sees the bright side!

Now onto Boo! We were blessed with a very memorable call from a social worker on Jan 31st, 2004. We had been foster parents for nearly a year and already had 12 little ones come and go. My heart was aching for a baby that I knew was coming....I just didnt know when. This was our night. The social worker said "I have two babies....a girl and a boy...both newborns...which one do you want?" I said...."The boy is our son...when can I bring him home?" I drove down to the hospital the next afternoon to pick up Boo. He was the most beautiful baby in the NICU. He was perfect. He was ours!
I brought him home and our friends came by to bring us various things we needed for him. We were used to getting babies by this point....but this one was different. This one was my "Boo". I just knew he was our forever son.
The next year was uneventful. We didnt take any more foster children. We concentrated on the family we had. Boo had some early intervention but overall was doing well.
When he turned 15 months, we knew something was wrong. He began having EXTREME tantrums. He would bang his head on the ground. He would hit and throw anything and everything if things didnt go his way. The problem was, we didnt always know what "his way" was. He couldn't communicate when he was raging. He was in a whole different world. He started to show some signs of sensory integration disorder and self regulatory disorder. The month before we finalized his adoption, our suspicions were confirmed. He was given the SPD dx. The problem was it was getting worse each day.
Boo was impulsive. He would run out of our house and down the street for no reason. He would run and laugh. He would bolt in parking lots with no regards to traffic. When he was three, I had him evaluated by the school district. He was able to hold it together and was denied services. I told the psychologist who evaluated him that he can hold himself together for very short periods of times but then will lose it. Once he loses it, there is no coming back. He could tantrum for two hours straight. He would kick, scream, bite, throw things for hours on end. There was no comforting him. It killed me that he was so frustrated and angry. He began rocking to put himself to sleep (also called stimming). He still rocks to this day.
I took him to two neurologists. One said he had "pre-ADHD" based on his symptoms and also on his prenatal drug and alcohol exposure. The other Neuro, that we had waited 6 months to see, told me it was my parenting that was causing his behavior. By now, Boo was nearly 4. I was at my wits end. No one will help us. No one believes that he has a serious problem.
Once he hit four, his speech hit a lull. He began to have a harder time articulating his feelings. He became more withdrawn. He lined up his toys and began hyper-focusing on certain things or parts of toys. He started to lose interest in his favorite TV programs. He was unable to sit for any length of time. He became even more angry and started making perverse statements. He started having severe anxiety. He was afraid to go places because he was afraid he would melt down. He started having a hard time reading social cues. He doesnt understand tone of voice. He takes offense and is easily hurt or angered by a tone in a voice that he perceives as "mean".
Boo also has a hard time understanding "kidding" or abstract concepts.
We found a developmental ped down at UCI who specializes in children with severe behavioral challenges. We waited 4 months to see her. She started Boo on medication and told us he was "complicated". She referred us to a psychologist for a neuropsychological evaluation. We started an 8 session evaluation. During this time, we were encouraged to "hospitalize" Boo for some severe behaviors he was displaying. We decided against this.
He was then dx'd with ADHD, Mood Disorder-NOS, General Anxiety Disorder and possible PDD-nos.
We then had to find a psychiatrist to manage his meds because his developmental Ped was taking a leave.
We were nearing the end of our rope by this time. We still didnt feel like we had a good "grasp" on what was going on. Even with those dx's, I still had questions.
We stumbled upon an AWESOME psychiatrist up at UCLA who was one of the leading psychiatrists at the Childrens inpatient and outpatient clinic. He works closely with the Autistic Clinic and is one of the leading researchers in Autism up there.
He took one look at Boo and said he was definitely on the Autistic spectrum. He diagnosed him with ASD, GAD, severe ADHD and a rule out of bipolar and fetal alcohol effects. We are currently working with him to find the right medication combination for Boo.
I felt like I finally found someone who UNDERSTANDS Boo. I finally had some Ammo for the school district. I take my paper with Boo's dx back to the psychologist who evaluated him a year ago. She takes one look at Boo and tells me he is NOT autistic. I wanted to scream. How dare this person who has spent less than 5 minutes with my son tell me that Boo's psychiatrist (MD.), who is an Autism expert, was wrong and she was right? I was livid. The evaluation they did on Boo that day was scarring. They actually held him down for one part of it. He wasn't cooperating. He was on sensory overload and was in a big room full of toys. They wanted him to put a puzzle together and he wanted to look at the other toys in the room. They sat him down after I promised him they wouldnt touch him. Anyone knows that a child with SPD or ASD, has a hard time being touched with no warning!
I left that day with little hope. I had been waiting a year for Boo to get some intervention from the school district. I was praying he could be placed in the Autistic preschool. They didnt want to label him Developmentally Delayed....They wanted to label him Emotionally Disturbed. They told me he needs hardcore behavioral therapy. The problem is, behavioral therapy is not always appropriate for children like Boo. He needs more specialized care. He needs help on the underlying causes of his behavior. It is clear, I am not going to win this fight. Boo is currently in the preschool program the school district recommended. He is in an ED preschool. We are taking it one day at a time. Homeschooling may be in the not too distant future.......stay tuned......