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!