Re-do!!

As of yesterday this is what my Christmas Tree looked like - nothing on it. OLA has been melting repeatedly the last couple weeks. For whatever reason the Christmas Tree seems to be his target. After one broken set of lights, a shredded strand of garland, and several broken ornaments we decided to pull everything off and put away all the breakable things. We debated whether or not to completely put the tree away.  After some thought we purchased a small amount of shatter proof ornaments. We will redecorate the tree today: using less lights, shatter proof ornaments (in smaller quantities) and a few heartier wooden ornaments. We will also remove the garland and add either small paper chains or popcorn strings (kind of old fashioned but workable) and then maybe add some bows.
Holidays are hard for children with emotional and behavioral problems and OLA is no exception. Higher level of excitement/energy and lower ability to self regulate makes this time of year fraught with lots of melt downs and tantrums. He wants to do all the fun things other kids are doing but gets easily frustrated when things don't work out just how he wants them too. And complicating matters is BBA needs in regards to the things he is doing and his own desire to be just like his peers. It can be really tough being the sibling of a child with special needs.
So we pause give a huge sigh and continue to wade into the waves in hopes of finding at least a temporary calm amidst the storm.

Holi-daze!!!

Holidays are a mixed blessing at our house. In many ways we do things similar to hundreds of other families. But then we throw OLA into the mix and ramp up the extremes several notches. Thanksgiving was craziness and meltdowns. We had five days of togetherness - which on one hand is really great. But on the other hand it just heightens the insanity of our lives. Wednesday started off with a bang. Dad and OLA went the rounds the very first thing after they both stepped out of bed. What a way to start the holidays. We finally got everyone fed and back to an even keel. Things went pretty smoothly after that - they all went out to finish up the yard work before winter arrives. But then we got to evening and we took up round two. Shouting, screaming, name calling, throwing Christmas items (we were trying to put up the tree) the whole works. The day ended pretty much like it began. Thursday we tried to head-off morning melt down by being up and serving breakfast when the kids got up. OLA had other ideas - he was not eating so he could save room for turkey dinner. Never mind that it is 8:00a.m. and dinner isn't until 1:30p.m. A melt down disaster in the making. We finally convinced him to take a few bites of egg. We managed to avoid the melt until about 11:00a.m -KUDOS for us!!!  Then by evening we did it all again. Friday and Saturday thankfully were fairly pleasant - with the exception of OLA trying to launch a piece of the Fisher-price nativity set every time he walked by - thank heavens it is Fisher-price and made for small but not so gentle hands. Though I'm not sure how others would feel about the reoccurring flight plans for the baby Jesus?!
Sunday morning started out with melt and ended with melt - because now we are back into the "worry about school" melt mode.  This on again off again melting behavior (although nothing new here) has increased in frequency since last Wednesday- and I don't really see a reprieve until January. Holidays are a mixed bag around here - the normal hyped up excitement mixed with the inability to process and deal with all that extra emotion and energy. We aren't drowning yet - but we just might be by the time we get through Christmas!! Maybe I'll ask Santa for a life preserve as an early Christmas gift so I can stay afloat!! Just a thought!!:)

The Garden

BLUE ROSE
Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn’t in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, “Mommy, I’m over here.”
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, “Hey Buddy, what’s your name?”
“My name is Denny and I’m shopping with my mother,” he responded proudly.
“Wow,” I said, “that’s a cool name; I wish my name was Denny, but my name is Steve.”
“Steve, like Stevarino?” he asked.
“Yes,” I answered. “How old are you Denny?”
“How old am I now, Mommy?” he asked his mother as she slowly came over from the next aisle. “You’re fifteen-years-old Denny; now be a good boy and let the man pass by.”
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone’s attention. He then abruptly turned and headed toward the toy section.
Denny’s mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn’t even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God’s Garden; however, “Blue Roses” are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn’t stop and smell that rose with their heart and touch that rose with their kindness, then they’ve missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, “Who are you?”
Without thinking I said, “Oh, I’m probably just a dandelion, but I sure love living in God’s garden.”
She reached out, squeezed my hand and said, “God bless you!” and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE, don’t turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.
From an old dandelion!

A Gift!

Life is a gift. But sometimes getting the wrapping paper off is tough. We all want to see what is inside that wrapping paper. Because for most of us a present is something exciting and fun. It is the same for us with OLA - he is a gift but it can be very difficult to get under the outside packaging too truly see him. Most people only ever see the wrapping paper on the outside. Be that paper pretty or ugly.  This last weekend was a difficult one. We had multiple melt downs. But after an inspirational moment at church I had the thought "do I see my son as God sees him?" You would think as his parent this would be a given. However, it is not - I too get caught up in seeing only the wrapping paper and not diving into look underneath to find the gift.  Although this insight doesn't change the struggles and challenges it does change how we deal with them. When I try to see OLA as God does I spend less time on the wrapping paper and more on trying to bring out the gift. Those waves that crash against the shore are very hard at times but when I find the true gift it makes the swim worth while. To my special little angel and his special big brother - You are both incredibly awesome and true miracles in our lives.

Empty

Often times when the going gets a little rougher than normal I am able to find, from somewhere down deep inside, a reserve supply of grin-and-bear-it fuel. But this week the tank seems to be empty. I realized this on Sunday when OLA started to melt mid-way through the main service of church. He was mad at both BBA and I over something that was trivial to us - but obviously not to him. I tried comforting, distracting, and asking him to walk out of the chapel with me to get a drink. He is physically too big for me to lift anymore. So we were kind of stuck. He started to get a little bit loud and aggressive. After a few minutes I just got up and left. I've never done this before - too scared of what he might do when I'm not there.  And I didn't come back - I went down to one of the classrooms and cried. My husband sits up next to the pulpit and was unavailable at the moment. And I guess BBA left too, to escape the rising tide.  A good friend of mine noticed what was happening and came to sit with OLA. He calmed down and went to his class after the main service was over. I continued to hide out in the bathroom until a few minutes into these classes and then quietly slipped out. My husband noticed me and followed. He suggested I go home - something I've never done before - at least not this way. He even drove me there and let me have some time to myself to try and regroup.
Unfortunately - the tank and the reserve have already been spent. I have had a tough time recharging this week. The battle is raging on all the fronts and I'm not sure we are winning.  And I certainly don't know how I'm going to recharge and I'm struggling with the desire of facing the gantlet of church services this next Sunday. I don't know if I can find the reserve to do it all over again this next time. I'm too tired and too empty to keep swimming against the waves.

Stop the Ride-I Want to Get Off!!!

The day before school started I had a meeting at school with OLA's teacher and other pertinent school personal. One of the things that was discussed was my "scribing for him - so that homework battles could be avoided. It was a relief because homework overall has been less stressful for everybody involved. However, this last week I received an email from OLA's teacher asking me to stop scribing for him with his practice math facts sheets. His teacher feels that it is interfering with his ability to pass the tests in two minutes. I was so angry I didn't even answer the email.  But, the next time a fact sheet came home I told OLA that he was on his own as per his teacher's request. I handed him the sheet of facts and a pencil. That sheet and the two I had scribed for where promptly crumpled and tossed across the room, followed by OLA running to his bedroom and saying he was not going to school. (Lovely!!!) I calmly picked up the papers and returned them to his folder some what wrinkled (LOL). I told him to get his bag and go out to the car. Amazingly he complied. This processes has been repeated now several times. He has about five unfinished fact sheets in his folder that returns home each day from school with a new set added.  I am so frustrated I could scream. I will not return to the battles that where so disruptive to our entire family last school year. But OLA keeps getting further behind. And to top it off - because we aren't doing those sheets he isn't practicing at all. Before he would have to give me the answer before I would scribe so he was practicing orally his math facts. I would suggest that the teacher give him the test orally - but I don't think he can even do it orally in two minutes. He just doesn't compute in his head that fast and the more stressful the situation the worse it gets (i.e. a time limit).  Having a child with special needs changes how you think about a lot of things and their importance. I was a teacher by trade (pre-children) and there was a time that I put great importance on math fact tests. But those feelings have changed (I understand the reasoning behind memorising certain math facts and  being able to access them quickly). I feel that for OLA it is more important that he knows them (i.e. memorised) than whether or not he can do 25 addition facts in two minutes or less. And in fact I celebrate his accomplishment in being able to do them - I am not worried about the fact that it takes him a minute or two longer to get it done.  So for now we sit with this stalemate and a whole lot of frustration. I feel like I am punishing OLA for something he has no control over - but somehow those at school must understand that there are needs here that are different from most children. For now I have taken to weeping into my pillow again at night and sending undone fact sheets back to school. I wish I could just stop this crazy roller coaster and get off the ride. I'm tired of having to fight for every little thing. I really wish people would make an effort to understand. But I guess if you haven't ridden the roller coaster there is know way to understand and most people don't want to get on!!!!

The Devil You Say!!

The "Devil" himself, designed this day. We had an appointment with the Geneticist today. We were really impressed with her - when we finally met her. Our appointment was scheduled for 10:15a.m. Check in was suppose to be at 10:00a.m. We finally checked in at about 10:45a.m and saw the doctor about 11:00a.m.  We spent an hour with her which was good - we will know the results in about 4 to 6 weeks. It was after that the nightmare began. They sent us over to the hospital for an outpatient x-ray and blood draw. It was suppose to be in an out. As we are walking over to the hospital from the clinic OLA realizes that a blood draw means a needle and he starts to stress. We get to outpatient and everything starts to go down hill.  They are working with a brand new computer registration system - this is there third day. It took nearly an hour to get checked in. (I kid you not). By now OLA is tired, hungry, board and worked up. We finally get checked in and in ten minutes they call for the x-ray. (they saved the best for last - LOL). After the x-ray the Tech calls the lab and they say they will be right there to get him. Twenty minutes later. They come - OLA is now unravelling at the seams. The first lab tech isn't sure what they need or that she can handle a behaviorally challenged child by herself, so she calls for back up. Not cool. ten or fifteen more minutes pass before the second lab tech gets there.  OLA veins are well hidden they patted a probed but were having a hard time trying to find  anything. At last they think they have found something and they stick (thankfully they hadn't done this before). They vein isn't a go and collapses within seconds. They call a third tech. By this time OLA is getting super stressed and is going down hill. We are on our way to melt down. The third tech arrives about five minutes later. He does is patting and looking at the other arm. (Needless to say OLA isn't thrilled about being poked a second time and we are having to restrain him.). Thankfully this tech is awesome and he finds a good vein the first try and a couple of minutes later we are done. Needless to day what should of taken fifteen to twenty minutes took two and a half hours. The parking lot after was not much fun. OLA melted and I don't blame him. Thank heavens that's done!!!! Big huge sigh of relief.  But as I said the "Devil" himself designed this day!!!