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

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

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

Hamster Time!!

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

Pablo's birthday

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

And on Facebook Pablove Foundation

Happy Birthday, Pablo!!! xoxoxo

Bo Brag....

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

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

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

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

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

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

15 letters AND their sounds!!!

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....