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

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...

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....

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

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.....

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?

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

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!!!

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....

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

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

Moving on......

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

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

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

Gearing up for our big goodbye....

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

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

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

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

Tonight I'm mad.

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

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

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

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

We have faith, hope and love!

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

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

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

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

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

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

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

Heaven has one more angel.....

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!

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?

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!

All in all, this week went very well. There is so much information to absorb. I have met so many people who will play a huge role in helping Boo.

I think Boo is sloowwwwwly warming up to the idea of "school". He had a good day yesterday. He got to go on a little bus ride around the campus and even had show and tell!

They have been testing and will continue next week. We'll start to put some goals down on paper next week and I will also meet with a behaviorist twice a week for support.

I am amazed at how tired I am from the driving. It's definitely going to take some getting used to. I applaud and empathize with anyone that is forced to commute every day. It's rough!

Ok, enough complaining. I'm going to try and enjoy our time off this weekend!

Third day of school = staying home sick

Boo woke up with a low grade fever this morning so we had to stay home. It actually worked out really well because we got to sort of relax. He's only been in the program for two days but they have been INTENSE. He has done so well. He has a hard time getting there in the morning but again it's a phenomenal program. There is so much support there that it's almost overwhelming.

I have been having a hard time wrapping my head around all of this. I knew what we were getting into. I planned and hoped and prayed for this to happen and yet....once again I find myself anxious. I thought once he was in the program I would feel at peace and at ease. I find myself worried and anxious that they will either 1. NOT see what we see and therefore think we are totally crackers for bringing him to the program or 2. He will wind up showing his full potential and then some that they will give us an even more dismal prognosis than we already have.

I already get the feeling from the staff that they are on to my anxiety. I feel like I'm being analyzed just as much as Boo! Don't get me wrong, it's a good thing. I just hope that over time they will truly get to know me and Boo well enough to know that all my anxiety and fears that I'm showing right now are not necessarily indicative of my overall parenting of Boo thus far. In other words, I am not continuously projecting my anxiety onto Boo. I am very patient with him. In fact I am MORE patient with him than with my other three children (I'm ashamed to say).

I have had so many professionals try to tell me what's wrong with Boo. I've heard everything from "You held him too much as a baby and that's why he is the way he is" to "He has conduct disorder and needs to be hospitalized immediately". I think I deserve to feel a little anxious and worried that history will repeat itself and I will walk away with another wrong answer :( I know this isn't going to happen but it's going to take me some time to build up my confidence in this new program. I have high hopes. I truly believe that this is the best place for Boo....but I'm still testing the waters.

I'll let you know how tomorrow goes!

Second day of school......

Sorry to anyone who came across my non existent post last night! I started to post last night about Boo's first day but then got distracted. I didn't realize I published it.

So here I am sitting in the parent's room at UCLA. It's after 11am and I'm waiting for Dr. S to come and meet with me.
We had a rough morning. Boo did NOT want to go to school today. He cried A LOT. It broke my heart to "make" him go but I know it's the best place for him. He had a great time yesterday. Everyone here is just wonderful!
It's hard for Boo to feel safe and comfortable but I know over time he will.

I am unbelievably tired right now. I could lay down and take a nap but am afraid I would start snoring!!

I'm going to keep this short because my brain is not working well right now. I think I'll wander down to the cafeteria once Dr. S gets here and see what I can find :)

7th floor or bust!!!!!

What a whirlwind of events the last few weeks has been! The boys have had 5 Dr's appts in the last two weeks! It's all been very good though because Boo is FINALLY starting the ECPHP next week! I still can't believe this is happening. We went up there the other day (UCLA) to do the admission and intake. I spent two hours with a social worker, the director of the program, the nurse and one of the teachers giving them a total history on Boo. They asked a million questions and I gave them as much info as I possibly could. This of course was in addition to the millions of questionaires I had already filled out. They are very thorough and so supportive!

It was hard to walk into a building that is labeled "Neuropsychiatric" facility with my 5 year old child. He's too young to really grasp "where" he is. He just thinks he's going to a fun preschool that's going to help him. I think I need to adapt my thinking as well.

I have a really good (peaceful) feeling about this new adventure we're about to embark upon. I feel that the people who run this program are top notch. They know what they are doing and they CARE. They want to help him. They want to understand him.

Boo got to go into his class for a couple of hours while I talked to the staff. He quickly made a friend with one of the teachers. The great thing about this program is there is always either one on one interaction or very very small groups. Boo will have someone shadowing him basically at all times. He will have someone to help him through his difficult moments. He will also receive speech, OT and PT therapies!
As we were leaving he told me "Mommy, I like this school because I didn't get in trouble." Ughhh that broke my heart! He had a great "intro" to the program but it won't always be that easy. The staff will push him. They need to see him melt so they can give him the skills to cope with his feelings. The director told me that they will try different techniques to see what works best for Boo. They treat each child as an individual. There is no blanket behavior mod for the class. I am so grateful for this opportunity. I am so grateful that Boo is going to be in such good hands.

I'm frustrated at the fact that if we didn't have our private insurance, Boo would not get this treatment. There are so many other children out there like Boo that will not get an accurate diagnosis due to insurance (or lack thereof). They will be labeled as defiant. They will not be understood or given the proper tools to help them in life. Boo is so complicated. He had so many strikes against him from the get go. However, I am choosing to believe that he will conquer his challenges. He will walk through this storm and come out a strong little man. He is an amazing child. God is awesome! He has blessed OUR family with this little soul who is sweet and charming and smart and FULL of life. He has a determined spirit. He WILL learn how to live with FASD and Autism. He WILL.

Ok, well I am off to bed. Tomorrow is our last day to sleep in (until 8). Next week we will all be up by 6am to get out the door. I will update next week. I will also pass on any info I receive that might help anyone reading my blog. Thanks for reading!!!

Welcome To Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



I have read this story/poem before but for some reason lately it just seems so applicable to all parents of special needs kids!

We got the call!!!!

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)

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

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"

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!!

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!!!!!

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!!

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

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 ...

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!!!

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......