A day in our life

The bug in the road

2010-01-04T16:43:00.000-05:00

August 3, 2009

Going into church this morning, there was a HUGE bug laying beside the curb as we stepped on the sidewalk in front of the church. Normally my daughter, would have wanted to pick it up and put it in her pocket to bring it home with her. But for some reason, THIS bug caused her such anxiety that we barely made it up the church steps, much less into the church.What was it about this bug that was so different? Was it that it was 2" long and brownish black in color? I doubt it, because she has chased me with bugs much bigger and far uglier than this particular bug before. Was it that it was dead? Doubt that too. We've had about 200 funerals for every type of bug you can imagine from ants to fly's to box elder bugs to beetles.So it wasn't really about the BUG in the road that threw my precious little girl into a panic today. It was another beast that is ever present, we just never know what will be the trigger. Its called F.A.S.D.- Fetal Alcohol Spectrum Disorder. FASD is caused when a pregnant woman consumes alcohol. The effects last a lifetime for the unborn baby. They manifest in many ways.Today it was a dead bug in the road- the proverbial "bump" in the road of life for my child whose life is for ever affected by the choice of her birth mother to drink while she carried my baby.Some days it will be a bug, or the sun or a noise, or the wind, or nothing we can even name that is so frightening to her that she can't even speak. She stands and trembles and whimpers and cries because she can't put a voice to what she is frightened of. But there are two things that she always remembers. No matter how scary "IT" is, Jesus and Momma are always with her. And together there is nothing they can't handle.Today we tackled the bug in the road. We'll wait and see what tomorrow holds. And with God's help we'll tackle that too.

A day in the life of a brave little girl

2010-01-04T16:38:00.000-05:00

This is from a blog I posted on June 29th on my personal page on our church social network, but it is so typical of a day in the life of a child with FASD. Yesterday afternoon I gave a friend a ride out of town to visit his children. Our plans changed a little from what we had first planned and we ended up going to a park. For most children this would be a wonderful experience. Bright sunshine, warm breeze, a new friend to play with, playground equipment. All things kid's love.For my Mauda~kae it was a mixture of fun, anxiety,fear,tears,feeling inadequate, feeling "NOT brave", over whelmed, pain, and finally relief because we were finally leaving this "FUN" place.As she watches this new little friend climb the steps up the twisty slide, she decides she IS brave, and can do it too. But because she is SO frightened of heights AND stairs, her little legs are starting to shake,on step 1, as she continues to climb, the shaking spreads up her little body,on step3. She is now visibly shaking all over, with tears in her eyes,on step 5. As she continues to climb, she repeatedly says. " I am brave, I am brave" all the while reaching with one hand in front of her to steady herself, and reaching with the other hand behind her to be sure I am still behind her as we ascend the climb up the "Jungle Jim" type equipment.Because of the enormous amount of energy and strength it has taken her to make this climb, which for her is the equivalent of Mt. Rushmore, her breathing is now very rapid, her face is getting red, and splotchy, and now she is over heated. As we made the decent down the slide, which took another 2-3 minutes to coax her into, she is very over heated. On top of the anxiety, she can not control her body temperature due to some of her medications, so now she needs to take a rest in a shady area to cool down. Because of Sensory Processing Disorder, the wind is bothersome on her skin this afternoon, so she insists on leaving her long-sleeved shirt on, which adds to her being over heated.While sitting there, she makes the statement " this is not a good time for me, I can't do anything". As I make sure she is ok physically, wiping her red little face with a damp napkin, and making her drink some water, I'm trying to find the right words to encourage her spirit. I remind her of just how bravely she continued up the stairs even though she was afraid, and THEN went down the slide too. And how before that she STOOD UP and looked over the top to see the sights around her. And how while standing there, she CHOSE to walk around the "catwalk" to the other side and go to the slide. Its pretty easy to administer aid to someones body most of the time, but if their spirit is wounded, and goes untreated, it can be devastating, maybe even life threatening over time. I can't let that happen, even once to my child. Its been said that she is conceded, or that I have made the mistake of making her BELIEVE she is the BEST at everything she does. Maybe I do sometimes over do the " ata girl's" but I NEVER want her to feel she isn't good enough, or brave enough, or any of the "enoughs".She is God's best. She has the greatest laugh, the sweetest smile, an awesome sense of humor most of the time, the biggest heart, the greatest compassion for other's who are suffering, or at least who she thinks is suffering. She's nurturing. Even while she was frightened of the loud train that passed by the park, she made sure that her new little friend was ok too.Brave? She is brave. Brave enough to get out of bed everyday and endure the unending confusion that is ever present in her brain. Brave enough to take the 22 doses of medications that she hates everyday just so she can try and do some of the fun things she loves to do like color a picture, or look at a book, or if its a Saturday, to ride her therapy horse for an hour or endure the hour or so of sitting through a church service on Sunday morning with all the lights, and sounds and different smells from every one's cologne, or laundry products they use, or their hugs that sometimes hurt just because they are touching her. So, I guess it depends on the definition used to describe BRAVE. For me it is all the things that my precious little girl is.

Christmas through the eyes of a child with FASD

2010-01-04T16:32:00.000-05:00

"Its the Most Wonderful Time of the Year", or so the song says. And in many ways it truly is. As Christian's we celebrate the birth of Jesus. The miracle of His arrival. But for a child with FASD it is one of the most overwhelming times of the year.Every where you go, there are decorations and lights. Down every street. If you go to the store, there are four times as many people, loud music over the intercom, all kinds of seasonal smells to greet you the second you walk in the door. So many displays that you can hardly move around with out bumping into something or someone.If you are a child with FASD, processing all of these things is all but impossible. Especially if you have a Sensory Processing Disorder. Imagine if you will, you just walked into a room that has Heavy Metal, RAP, Country, Classical, and Bluegrass music playing at full volume, there are strobe lights of various colors, sweet, sour, strong, soft, flowery, citrus, and herbal scented candles burning all around you. Then imagine that you have on the scratchiest, roughest wool body suit you can imagine, that covers you from head to toe. On your hands you have mittens on made of the same material that won't come off. So no matter how hard you try to escape all of these assault's, you can't.That is sort of what it is like for a child with Sensory Processing Disorder who has FASD. I know this because my precious little girl suffers both conditions.While she loves to drive around and see the beautiful lights, after about two blocks, she is overwhelmed and ready to go home. If we go to the store-which I try to avoid as much as possible, it only takes about 15 minutes on a good day for her to be ready to leave. On a bad day, we are lucky to make it in the door. Should I have to extend our trip to the grocery, and not leave the first time she says 'Momma I wanna go home" it isn't long before she is either in tears or screaming.Now lets look at Christmas morning- most kid's love ripping the paper off their presents to find the treasure Santa left them. For my little one, as much as she wants to like the idea of lots of presents, it too is overwhelming for her. After about 3 or 4 presents that are wrapped in pretty paper, she is tired and needs to rest-remember she is still wearing the woolen mittens that don't come off-so she has exhausted herself just unwrapping the presents.I don't mean to sound sad, or disappointed, because I'm not. I am so blessed to have the remarkable little girl that is my daughter. Her challenges have made it possible for me to really look at what makes Christmas special. Is it the lights, decorations, and presents? The frenzy of running around and worrying about what presents to buy? No its not. I have the privilege of reminding my little girl and myself of the true meaning of Christmas. The REALLY important part-that our Lord and Saviour was born and that we celebrate His birthday on Christmas. That it isn't about the presents and decorations. It is about a baby born 2000 years ago. And ya know what? She can understand that and not be over whelmed, because she knows who Jesus is .