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!!!

Another Week

We've started another week of school.  So far we've had modest success with the reward OLA's teacher offered for being on time. OLA gets to be the teacher's helper and turn on the classroom computers if he is there on time in the morning. It is great for now - but it will be interesting to see how long this lasts. I spent part of last Thursday morning visiting with the school counselor about what is going on. She is suppose to go in this morning and observe him to see if we can find additional ways of helping him be less stressed. This too will be interesting to see if anything comes up. It is very frustrating to have to constently fight everyone over this.
We also finally go to see the Genetisist this week. This appointment has been five months in the making. It will be enlightning to see if they confirm anything or if they just add to his laundry list of labels. Since he's beginning to look like alphabet soup. Lot's of labels but know solutions. Round and round we go where this merry-go-round stops nobody knows!!

Outside The Box!! What Box???

We often joke that OLA thinks so far outside the box that we aren't sure he even knows there is a box. Here's a little humor for all those living with people who think way outside the box.

FORREST GUMP GOES TO HEAVEN

  The day finally arrived.   Forrest Gump dies and goes to Heaven..

He is at the Pearly Gates, met by St. Peter himself.  

However, the gates are closed,

And Forrest approaches the gatekeeper.


St. Peter said, 'Well, Forrest,

It is certainly good to see you.    We have heard a lot about you.  

I must   tell you, though, that the place is filling up fast, 

And we have been administering 

An entrance examination for everyone.  

The test is short, but you have to

Pass it before you can get into Heaven.'


Forrest responds, 'It sure is good to be here, St. Peter, sir.   

But nobody ever told me about any entrance

Exam.  I sure hope that the test ain't too hard.

Life was a big enough test

As it was.'


St. Peter continued, 'Yes, I

Know, Forrest, but the test is only three questions.


 

First:

What two days of the week

Begin with the letter T?


 

Second:

How many seconds are there in a year?


 

Third:

What is God's first name?'


Forrest leaves to think the questions over.  

He returns the next day and sees St. Peter, who waves him up, and

Says, 'Now that you have had a chance to think the questions over,

Tell me your answers.'


Forrest replied, 'Well, the

First one -- which two days in the week begins with the letter 'T'?

Shucks, that one is easy.   That would be Today and Tomorrow.'


The Saint's eyes opened wide and

He exclaimed, 'Forrest, that is not what I was thinking, but you do

Have a point, and I guess I did not specify, so I will give you credit

For that answer.   How about the next one?' asked St. Peter.


'How many seconds in a year?

Now that one is harder,' replied Forrest, 'but I thunk and thunk about

That, and I guess the only answer can be twelve.'


Astounded, St. Peter said, 'Twelve?

Twelve?  Forrest, how in Heaven's name could you come up with twelve seconds

In a year?'


Forrest replied, 'Shucks, there's

Got to be twelve: January 2nd, February 2nd, March 2nd... '


'Hold it,' interrupts St. Peter.

   'I see where you are going with this, and I see your point, 

Though that was not quite what I had in mind....but I will have to give

You credit for that one, too.  

Let us go on with the third and final question.

Can you tell me God's first name'?


'Sure,' Forrest replied,

'it's Andy.'


'Andy?' exclaimed an exasperated

And frustrated St Peter.


'Ok, I can understand how you

Came up with your answers to my first two questions,  

But just how in the

World did you come up with the name Andy as the first name of God?'


'Shucks, that was the easiest

One of all,' Forrest replied.  'I learnt it from the song,

ANDY WALKS WITH ME,

ANDY TALKS WITH ME,

ANDY TELLS ME I AM HIS OWN.'


St. Peter opened the Pearly Gates,

And said: 'Run, Forrest, run.'

The Whole World

Honestly, there are some days when I feel like we are no longer in a pond, we aren't even in a large lake, but rather in a huge ocean - when the waves hit. But, the past few weeks it hasn't been OLA that has caused the largest waves that we are swimming against - it is everybody else. This would be rough enough if the waves stopped with the medical profession, or the mental health field, or the school district. But when you occasionally throw in fellow church members, friends, acquaintances, and family members (especially family members) the waves become giant tsunami's to try and keep your head above. It seems like we are constantly having to justify a decision as to what we feel might be right for OLA and our little family to the entire world. People asking are you sure about that, have you thought about this, what if this happens. It especially is hard when at times people have said "you shouldn't always live your life on the "what ifs". How contradictory is that. I wish people would make an effort to really learn about FASD and it's resulting disabilities. Then make just two assumptions about us - one, my spouse and I are reasonably intelligent human beings, and - two just maybe we have considered the "what ifs" of the decision. Maybe instead we could use a little support in those decisions and not all the second guessing. So today I am swimming against the rising wave of the tsunami with no feeling of an effective life jacket!!! It's a long way to swim to shore without drowning!!!

School and other Nonsense!!

We are now nearly four weeks into the school year and the roller coaster ride is starting. One day OLA is in a rush to get to school and the next he is absolutely refusing to go. Tuesday was one of those days where he was refusing to go. After getting dressed and having breakfast he went into the Living Room, laid down on the sofa, and promptly announced that he was not going to school. Then the list of reasons followed, I'm too tired, my head hurts, I'm going to cough too much, I have to sit and do this work, I can't get a drink, I'll get too hungry, we can't have food in the classroom, I can't wipe my nose, I'm not allowed to open my desk, and on and on. For every solution I gave came another reason not to go. (I should know by now that once he starts to cycle there is absolutely no reasoning with him - I guess I'm a slow learner.). I finally convinced him to go out to the car where I was able to get him into the van and drive over to the school. Another ten minute battle ensued before I could get into a position to catch someones attention and get him into the school. It is now 9:00 a.m - school starts at 8:20- forty minutes late - this the second time in less than a week - we had a similar battle the previous Thursday. I now have the principle's cell phone number to use once I get him to the school drop off area. That's great but no-one is giving me any suggestions on how to get him into the van. He's over ninety pounds and when he sits down on the floor and refuses to go - what's a body to do- keep in mind that he is also irrational in his thinking. When it came time to pick him up he wasn't outside. I went in to his classroom. He and the teacher where having a "talk" about his tardiness. As we left she told him "now no more of this nonsense". I didn't say a word. But in the back of my mind I'm thinking "hope that works for YA!!!" (Little sarcasm in the tone). Now fast forward to Wednesday - he up, dressed, had breakfast, done homework, and in the van, all while repeatedly asking me if he's late yet. Guess what? - he's the teacher's special helper for the day - so he has to be on time with homework done. Well battle averted for Wednesday. Thursday - minor resistance - two minutes late. Today heavier resistance 15 minutes late. Anyone care to guess where this is heading?? (We might catch a break on Monday, because of the weekend.) I'm thinking we are cycling once again. But remember - "NO MORE OF THIS NONSENSE!!!!" "HOW'S THAT WORKING FOR YA!!!!" (Lot's of Sarcasm added). Riding this one out to see where we drift ashore.

In Honor of Awareness, Friendship, and Understanding!!!

A farmer had some puppies he needed to sell.
He painted a sign advertising the 4 pups and set about nailing it to a post on the edge of his yard. As he was driving the last nail into the
post, he felt a tug on his overalls. He looked down into the eyes of a little boy.

"Mister," he said, "I want to buy one of your puppies."

"Well," said the farmer, as he rubbed the sweat off the back of his neck, "These puppies come from fine parents and cost a good deal of money."

The boy dropped his head for a moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer.

"I've got thirty-nine cents. Is that enough to take a look?"

"Sure," said the farmer. And with that he let out a whistle. "Here, Dolly!" he called.

Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur.

The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse.

Slowly another little ball appeared, this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up...

"I want that one," the little boy said, pointing to the runt. The farmer knelt down at the boy's side and said,
"Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would."

With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his
trousers.

In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe.

Looking back up at the farmer, he said, "You see sir, I don't run too well myself, and he will need someone who understands."

With tears in his eyes, the farmer reached down and picked up the little pup.



Holding it carefully he handed it to the little boy.

"How much?" asked the little boy... "No charge," answered the farmer, "There's no charge for love."

The world is full of people who need someone who understands.

Reflections on Loneliness

Tonight as I was laying with OLA while he fell asleep I found myself reflecting on how lonely some battles can seem. I'm am currently the president of our women's service organization at church. Last night I was in a meeting with a couple of other women - we were discussing the various needs of families in the congregation and what we could do to help. It is awesome to have the opportunity to help others - but at the same time it brought a real pang of loneliness to me. I wish I had even one person in whom I could confided the depth of the pain and loneliness this battle we are fighting can bring. I do not have a single person with which I can share those feelings. It is a very, very lonely place to be. Sometime I wish I had a truly non-judgemental shoulder to cry on. But, alas, at this point in time it is not to be. So for now I will continue to swim alone and hope in doing so I don't drown. I wish someone truly understood OLA, our family, and my soul.

FASD AWARENESS

Although this is posted on my sidebar it is worth another look. Alcohol affects children from every walk of life - every color, every economic statis, every religion. It does not matter who you are - if you drink while you are pregnant your baby can have life long struggles.

FASD Awareness

September 9th is National FASD Awareness Day. Here is one video about a mother who's son was diagnosed with an FASD.

Beginning Second Grade

We have officially survived the first week of second grade!!! Hallelujah!!! But it was rough!!!  I started the the year off with a meeting of staff members relevant to OLA's second grade experience. Our OT also came with me. I needed to explain our concerns about the up-tic in some of his behaviors over the summer. The OT came to explain some the things we are doing to help with his SPD issues. We wanted some help in implementing them to lessen some behaviors. We got a reluctant yes for the "fidgets" in class. A semi yes with the "chewys" (they are in the nurse's office - IF HE NEEDS THEM. Like any second grader is going to ask his teacher if he can go to the nurse to get his pencil chewy - YEP, I see that happening - NOT!!!!! The principal had concerns about him swallowing it!!! :-(   Mean while his pencil's are probably all missing their erasers and have chew marks on them, because that is a better option.) And we got  all out resistance on the music therapy because it might make him look and feel different from the other kids - because we are now all a bunch of clones and there are no other children in the class that are different - what happened to the celebration of differences??!  So it is shaping up to be a great year. And we wont even talk about the homework battle that has already begun!  Wednesday of last week was the first official day of school for the kids. It was only a half day. On one hand it was great, because OLA could ease into the new schedule. On the other hand it made the rest of the week harder because we lacked a consistent routine. Friday night ended with a major meltdown and Saturday was even worse. He cycled all day long. fun for us!! Not so much!!! Now we are in to the second week - it should be interesting to see how the weekend goes?! Especially since today is another early out because of excessive heat!! Life is just one roller coaster ride after another!!! I guess I'll sit back and enjoy the ride!!! If only I didn't hate roller coasters so much!!!:)

The Up Side!!!

The past two weeks have been pretty rough over all. Lots of struggles. But in quiet moments I see more clearly the beauty of OLA. He has so many wonderful little qualities that most people don't ever see. He has the quirkiest funny little sense of humor. Sometimes he struggles with jokes or words with double meanings - he just doesn't always get it. But there are moments when he does get it and he will have us all in stitches. He may struggle with writing ( its like you have ask him to amputate when you ask him to use a pencil). But give him a screw driver, pair of pliers, or other tool and ask him to fix something for you and he's on it. Many chores create a drawn out battle - but put him in the garden with something that needs to be planted and he's the man. Or start making something in the kitchen and he climbs up next to you and helps. The other day I was making several different dishes that required vegetables. I had barely started to peel and dice the carrots and celery when he was there offering to assist.  Within a minute or two he had completely taken over the job.  Under my supervision he did all   the  carrots and  celery.  ( He left me with only the onion to do  ;-)  ). And he did an excellent job. There are so many times he can bring a smile just by walking into a room. He is tough and resilient with energy to spare. So many little things that others don't notice. They are too busy noticing the times he doesn't have it together and when his behaviors are less than desirable to see the sunshine that is there waiting to be let out. I wish they could see what I see on the Up Side!! These kids can be tough to parent but they can also bring lots and lots of joy if you take the time to see it!!

Misunderstood!! The Problems of an INVISIBLE Disorder!!!

If it wasn't for commitments that my spouse and I have already set in stone at church I don't think I would go back today. The events of this last week have totally taken the blinders off. This last week we had the opportunity to help in a fundraiser for a friend. This meant a big time commitment. OLA did so well. I was so proud of him. Seven hours on Friday and seven more on Saturday. It meant lots of people, lots of noise, hours in the heat, and a disrupted meal (and other things) schedule. But he held it all together until the last 90mins. on Saturday. It was the adults inter-acting with him that had far greater issues in dealing with him. As I watched the finale scenes play out I wondered who had the greater issues, my little guy or the adult involved. I think it was the adult involved - one who could not be bothered to learn anything about the FASD Spectrum. I think their melt down was far worse than anything my little guy did in those last 90mins. As I watch various adults interact with OLA I'm seeing that for them it is very easy to "talk the talk" but far harder to "walk the walk".  And yet they expect my little guy to do it all the time - when they can't even do it.  This last event coupled with earlier experiences this week have left me little desire to attend church. I have not ever felt quite like this - it is far beyond just the lazy "oh do I really have to get up early today." It goes much deeper than that. Maybe this is one wave I'll let drown me - I no longer have the urge to swim against it. But OLA is awesome - he did so well and I am SO PROUD of him! Kudos to him!!!!

You Think You Know!!!

Sometimes you think you really know people- and then you find out you don't!!! This last week I found out that there are people in the congregation at church who have very different feelings about OLA and about our family than they present on the outside. We have always felt like the congregation was accepting of Us -but apparently not everybody feels that way (this should not surprise me - but it did sadden me and make me a little angry - especially from those who profess to be christian). First came the news that there are people at church who feel that we should never have adopted OLA because we (his parents) are Caucasian and he is African-American. Since when should skin color determine whether a person should have the love of a family?  Then came the real crux - some of those people feel that OLA's issues stem from being African-American. I've never understood how you could think someone's issues are physically caused by their skin color. Alcohol is no respecter of persons. It affects you regardless of race, culture, gender, income, social standing. It just does not matter whether you are rich or poor, male or female, American or Brazilian, Black or White - (or green with pink polka dots for that matter). If a woman drinks when she is pregnant - then her baby can have permanent disabilities caused by that alcohol  consumption. OLA is a blessing to us and we learn much from his and our struggles. We are strengthened in our trials. And yes he can be very difficult at times - but I would not trade him for any other child. He is a valued member of our family and I wouldn't pictures "Us" without him as part of our family.  And I thought I knew people!!

Some Days

Some days just suck! It all seems overwhelming and there is no relief from the waves that come ever faster. These days OLA seems to be cycling in his behaviors more often. All though they are often not as intense they are more frequent. It worries me for when school starts. I don't know if I can handle the home and school work battle. And I don't know if I can handle all the extra stress that it will bring. I'm so stressed now that my stomach is constantly in chaos, my shoulders are always as tight as a drum and I often have a headache that doesn't quit. I can just imagine what the added stress will do to my body. It was worse today because I had no time to exercise. Life is chaotic and some days it just sucks. Will it ever end? It feels like I have fallen into this abyss that has swallowed me up and from which there is no escape.  It is like living in an almost constant nightmare. Much of what I use to enjoy doing is no fun anymore - mainly because it is always coupled with one type of worry or another.  Sometimes it really hurts to be a mother and it goes way beyond any kind of physical pain. It is a deep soul consuming pain, worry and grief. Maybe if I swim harder one day I'll beat out the waves.

A Bunch of Bunk

We saw a psychologist today - what a waste of time. We sat there for over an hour and listen to him tell us all the things we were doing wrong as parents to create our child's behaviors. We just need to take control and take back our house. We ask him point blank to give us some ideas/tools to that would help us do this. But we just got the hem and haw act from him. He even watch OLA go into full melt down mode after being told no (and no giving in on our part). We held firm - but obviously we are doing something wrong as parents. It was he who finally said after about thirty minutes of watching us standing firm and OLA in melt down mode that he decided our time slot was done and we should just leave. In fact he told us our son was a paradox - he'd never seen a child with ADHD/ODD/SID behave quite like OLA was behaving. He said OLA was quite smart  and didn't have the standard physical build of a child with fetal alcohol.  In fact he ask me point blank if I had ever seen a kid with full blown FSA because our son didn't have the physical features. And I countered "did you know that only about 10 percent of children on the FASD spectrum actually have any real physical features." By the time we left I felt about two inches tall and like the worst possible parent in the world. All of my son's problems are obviously my doing - had nothing to do with the fact that his birth mother smoked, did cocaine and drank while she was pregnant. (And no I don't believe his birth mother ever intentionally set out to hurt him in any way- but alcohol damages unborn babies). By the time we left I was so angry I want to participate in a few juvenile activities against him myself!  Sigh!!!!!!!!!!!!!!! and SCREAM!!!!!!!!!!!!!! There is just no winning!!! It is obvious that we are terrible parents!!!! AAARRRRRRGGGGGGGGHHHHHHHH!!!!!!!!

OT an d other things!

OLA had his second session with the OT this last week. It seemed to go well. Next week she is going to start him on some listening therapy. She tried it with him when we were there on Tuesday. It seemed to help him not be so reved up for about a day and a half. So I am excited to see if we get more long lasting results when he is doing it everyday here at home. We shall see?! But hoping it helps! It was so nice to have melt downs ease after just a minute or two. And not to repeatedly cycle. And he was so much easier to redirect. Keeping my fingers crossed.
And yesterday we got late notification that OLA was accepted in the one on one reading course that I had signed him up for. They had 84 kids sign up and only 14 tutors. So 70 kids could not be accepted into this special program. Initially we were among the 70 kids - got the letter at the beginning of the week.  The coordinator called yesterday and ask if I was still interested - they had a last minute cancellation. Of course I said yes. I am so glad for small miracles. Even though he is currently reading at grade level he struggles to get there each year and once he does he struggles to stay there. So thank goodness for small miracles he will get a little bit of extra help this summer. It really worked last summer since he also participated then as well. Happy days!!!

TIRED!

I feel so tired today. Both emotionally and physically. I'm tired of not getting enough sleep. I'm tired of the meltdowns. I'm tired of the name calling. But mostly I'm tired of always having to apologize or explain OLA's behavior. And then there is always feeling like I have to explain my parenting decisions to people. They've never walked our path. It's always "why aren't you firmer with him" or "why don't you tell him 'no' ". Never realizing we are firm with him and we do tell him 'no'. Telling him 'no' leads to hours long melt downs and being firm oft leads to aggressive confrontations. They've never had to side step multiple flying objects. Or listen to their seven year old repeatedly tell them they are fat, stupid, dumb, a butt head, ugly and a host of other words that are ugly and hateful. Nor would I guess too many of them have scratches from where there seven year old has raked their arms or legs in an out of control rage. I'm tired of people assuming they know exactly what I am doing wrong as a parent or exactly what needs to happen to OLA to "straighten" him out. Lots of advice but little or no understanding. Aren't we good at judging other people and what they need to change. (LOL). I'm tired of the judgement but no volunteers for a little bit of respite. It's a daily battle that I fight (24/7) with almost no break. I think I've lost my sense of humor in all of this. Maybe that's the true swimming against the waves battle that I need to fight!?  So today I'm Tired!!

My BFF!!

Sleep is a delicious thing. It is quickly becoming my BFF. I lay in bed at night and wait for the blessed relief of sleep to over come me. It is the time of day that I get a few hours of respite from the battle we are fighting everyday. Everyday there are new challenges to be fought and new waves rolling onto the shore. Some days the battles are more challenging than others but most days are taxing. I love OLA with all my heart but he is a hard child to parent and that is the reality. At the end of many days I am bone weary and spent - both emotionally and physically. There aren't many who know just how challenging parenting a child like OLA can be - not unless you too are parenting one of these special angels. So seven or eight hours spent each night with my BFF is a time of respite. Time to let go of the days challenges and regroup to wade into the fray again tomorrow.

The Fourth of July

This is how we survived the Fourth of July. One good pair of ear protectors. Used for operating noisy equipment. We used them at the fireworks and the parade. OLA was able to enjoy both these events with this aid. He was able to put them on when the noise associated with these two events became overwhelming. It was really nice because we avoided melt down. I'm thinking of investing in several pairs - one for each car and one for the house - so husband can have this pair back for his lawn mower! Another small miracle!!!

Summer

As frustrating as school was this passed year there is a part of me that was ready to send OLA and his BBA back to school three days into summer break. Summer has brought its own challenges. Although the melt downs have been less often and less severe, we still manage at least one most days. It is tough to keep a child who doesn't self entertain well busy and out of trouble all day every day. The easiest would be to park him for half a day in front of the wii and leave him -any longer and we have over stimulation melt down.  But the teacher/mother part of me cannot consciously leave him in front of the wii/TV/computer longer than forty mins. a couple of time a day. He still needs to do other things that don't involve electronics. And this creates the quandary of finding things to engage him that doesn't run all the rest of us ragged and allows BBA sometime for his interest too. Part of me can't wait for school to start again. And part of me dreads the school/homework battles that are sure to in sue once we do go back. SIGH!!! No way to win this one?!?!?

Good Times

For all the stressful moments in our lives right now there are occasionally good ones too!! Last night was one of them. BBA and OLA participated in our packs pinewood derby. They both loved it. OLA is good with his hands - for being only seven. He and BBA (with dad's help) built their cars. I really need to find someone who is good with kids and wood working and connect them with OLA. I think it is a good way for him to work off some of that excess energy.

OLA's car!

BBA's car.

What a great night. It is good to enjoy a little peace once in awhile.

The Report!!

It is interesting to deal in an integral way with the medical field. about two weeks ago we finally received about two thirds of the written report from our clinic visit in May. (We are missing the PT report and the Education specialists report). The diagnosis at this point is SID and ODD with the possibility of FASD. We really didn't get anywhere. They are sending us to see a Geneticist in October. And they have recommend a special behavioral OT class (Occupational Therapy) for the SID/SPD (Sensory Integration Disorder/Dysfunction) and a Special behavioral therapy with a Psychiatrist for the ODD (Oppositional Defiant Disorder). And we should continue to watch for ADHD - which they found that he didn't meet the full criteria for (all though his regular pediatrician had already diagnosed him with in October).
The most interesting thing though is that SID can trigger ODD problems. And ADHD , ODD, and SID are all issue that can be attributed to FASD.  Yet we can not get the Doctors to diagnose him with FASD - even with the confirmed knowledge that his birth mother drank. So off  to a geneticist we go.
My biggest fear is that we will see the Geneticist in October and he/she will not find anything and we will be right back on this wild roller coaster ride we are taking. So crazy and frustrating. We've been told that doctors don't like to diagnose FASD because it is a diagnosis that directly blames another person for the disorder (i.e. the birth mother) - but the only way you can get a disorder on the FASD spectrum is if there is maternal drinking during pregnancy!!! AAAAAAHHHHH!!!! Big time scream in frustration. So the fun continues as well as the insanity!!

Pretending!!!

Church today was wonderful!  OLA did so well!!! I was living in a fantasy world where this could last beyond the moment. This is never good - because when the crash comes it is worse than when I wait with baited breath for the next wave to hit.  And hit it did - about an hour after coming home. OLA went into melt down.
It seems that I expend so much effort these days in trying to protect OLA, BBA, and their dad that there isn't enough left over to protect my own heart. And it is torn in pieces over and over again. But the melt down today also meant a moment of disagreement between their dad and I. It is these times that seem to hurt the most - when we stand on opposite sides of the war we are waging. It is tough to maintain the peace when you don't have anything to shield you heart with.
Then my V.T.'s arrived and I plastered a smile on my face - I was actually very glad to see them - but there was know way to really tell them how my birthday was going. Not with my heart in pieces and no time to mend it.
Happy Birthday to Me!
Maybe one day the waves will lesson but for now I fight to just keep from drowning.
And thankfully - things are a little better since school has ended. Nine weeks or respite until we once again wade into the waves that school will surely bring.
Praying for a miracle - maybe someday!

Tears on a Pillow

It seems like I spend I lot of time crying theses days. At night, in the dark, laying by OLA or in my own bed. The tears slip quietly into the darkness. Things have been frustrating these days. Sometimes the waves seem so big it is hard not to get caught in them and drowned by their pace.  It seems we hit a lull for a time and then we crash. How does one not get over taken. I guess I had better learn to be a better swimmer

Heart Ache!

Tonight my heart hurts. We have had a couple of days of peace with OLA. Almost a snapshot in time where you could believe that we are a normal everyday family. But it can change in an instant. For the last couple of days OLA had been so peaceful, no melt downs, no fights for baths, no resisting bedtime. But tonight came the Dr. Jekyll/Mr. Hyde transition. The melt down, the name calling, the fighting the shower, and resisting bedtime. When at last he caved and let me lay next to him, my heart hurt for what might of been. I try not to dwell in this place to long it doesn't change things. But some times my head goes where my heart would prefer it didn't. As I lay there in the darkness, with tears silently streaming down my cheeks that heartache would not leave and neither would the "what ifs?"  There are moments when I feel how cruel life can be. And yet there are moments when I know the joy of this sweet little boy. That is when my heart ache the most - wishing it could be like that for always. If only his brain didn't have that short circuit.  But, I wouldn't trade him for a million children, he is mine, heartaches and all.  So maybe tomorrow we will see Dr. Jekyll again instead of Mr. Hyde.

Eruption!!!!

Friday evening was not a good one at our house. OLA went into meltdown mode after being told that he had to change activities (obviously he did not want to change). Chaos reigned at our house. He threw a plant across the table and floor. (Believe it or not the plant actually survived - even with all the dirt he launched in the shaking and throwing).

Chairs were tipped over and the table eventually ended up half way across the kitchen. The sofas in both the family room and the living room were pushed across their respective rooms.

The garbage can was shoved over. He also tipped over a bucket of toys that was waiting to be taken back down to the basement out of the way.

Books were launched across the room - a few were even thrown at me. Because I was obviously the bad guy - since I was the one that was not allowing him to continue with the a fore mentioned activity!!

Before he was finished he had also trashed his bedroom. Including clothes out of draws and closet. Sheets on the floor, mattress off the bed and toys/books launched to the opposite end of the room. But some how through it all there was no major casualties to people, animals or objects. The craziness continues. It would be great if we could find a way to lessen the trauma and stress for OLA as well as the rest of the family.

A Thousand Acres and a Million Dollars!!!

Oh, how I wish I had a thousand acres and a million dollars!!! OLA. loves to plant the garden every spring. He has liked it since he was big enough to use a small shovel and put the plants/seeds in the holes. Last night we planted our garden. Many of the plants he did almost all by himself. He dug the hole, popped the plant from the pot, put it in the hole, and filled in the dirt. Dad put the mulch around it and then OLA. watered it. It was a great night wish there could be more nights like that and plenty of space and money for the plants!

The Tomatoes!

The Bell Peppers!

The Broccoli!

The sweet Peas!

Now if I could only get him to eat them! :)

The Trial that has become church!!

I use to enjoy going to church. But the last two months it has meant one more series of battles. Today was terrible. It started with in a few minutes of arriving at the chapel. He started at first just tapping with his fist, then he started to kick me. Slowly he went to hitting and kicking a little bit harder. Then he started picking on his brother - ripping the pages out of his notebook, grabbing and throwing his pencils and crayons. Finally I sent BBA to sit with one of my friends. Then he escalated to trying to bite me and scratching me. I have little marks all up and down my hands. He's to big for me to lift and the best I could do was try to restrain him quietly and avoid his attacks.  But, I don't want to give up church - it is solace to my soul. Somethings got to give and soon.