Thursday, May 26, 2011

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.

Monday, May 23, 2011


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.

Tuesday, May 17, 2011

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! :)

Sunday, May 15, 2011

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.

Friday, May 13, 2011

The Big Day!!!!

Well, we made it through Tuesday. We are waiting for the final written report - which could take up to a month - Yippee?! We left not sure whether we had accomplished anything  or not. And it was a very long day.
Our day at the children's clinic started at 8:00 a.m. and lasted until 5:00 p.m., with a 30 min lunch.
First we met with an education specialist - everything she tested put OLA in the average or above average category. But I want to know if you can discount what his regular teachers and school specialist have seen over the last two years. As well as all their hard work.
Then we went on to meeting with the medical staff. The doctor told us she wasn't really seeing any issues with ODD or ADHD. And she wasn't willing to rule out FASD because of confirmed alcohol consumption as well as the fact that the spectrum can be so broad.  Also how he responded to typical ADHD medication - which can be a common problem in FASD.
After that we went on to see an Occupational Therapist - her preliminary diagnosis included both SI (sensory integration Issues) and ODD tendencies - but note observances made by pediatrician above.
After lunch we met with the Psychologist.  He had an IQ score of about 116 but a big discrepancy between what she was seeing and what we as parents are seeing. But she too indicated that she did not see any glaring issues that would point to ODD or ADHD. And she at that point did not rule out FASD.
Then it was on to Speech/Language specialist. Just like with our previous experience in Preschool and  Kindergarten she found nothing amiss.
Last but not least we saw a physical therapist. She too didn't see any glaring gross motor skill problems. But couldn't really explain some of the issues we ask about - like falling off his bike for no apparent reason.
It was a long day and it will be interesting to see what the final report will determine. But my husband and I left wondering what we really had accomplished.
And on a pleasant side note - OLA went into melt down mode the minute we hit the van to come home - something we had warned the psychologist would happen - not sure she believed us. He had them all charmed - which he can do!  So - we shall see. In the mean time it is back to riding out the waves - nothing new there!

Monday, May 9, 2011

Medical Fray continued....!

At first our pediatrician wanted to send us to a children's hospital that was about two hours from our house but after several weeks of not hearing anything we finally called them. The nurse at the hospital told us that this Dr. probably wouldn't take OLA because he was too old. "TOO OLD!! - He's only six for heaven's sake?!! But it is true she only takes children under the age of five!
Next she was going to send us to an office here in our town. At first we are thinking - "Well, at least it is a place to start." But the more we heard the less we felt that this was the place that could help us with OLA. They were mostly glorified pediatricians - not really Drs. skilled in treating children who have been chemically exposed in uteri.
At an appointment for me I was talking to my Dr. and the subject of stress came up. He ask me what was so stressful. I began telling him what was going on with OLA. He said he thought that we should go to the University  Children's  Hospital (about three and a half hours away) because they have a department that specializes in children's disabilities and disorders - including children who have been chemically exposed in uteri. At last someone was really listening and taking us seriously. The only crux is that there is a three month wait to get in.
So tomorrow is the big day - we are going to the hospital to have a complete work up done. Hopefully we will then be on the path to finding ways and resources to help OLA. We Shall See!!!!

Thursday, May 5, 2011

The Medical Fray!!

After the interview I saw on the news we began to put the pieces together as to OLA's behavior. We also entered the world of learning to advocate for our child. We knew we needed medical help and a diagnosis. But we weren't sure where to start. We finally ask my husband's doctor. He recommended that we start with the pediatrician. So dutifully we made our appointment and went. Now to the doctor's credit she spent a long time with us that day - nearly an hour and a half. The diagnosis was ADHD - which actually didn't come as a surprise- everything I had read up to this point had stated that many children with and FASD are mis-diagnosed with ADHD.  But, we agreed to try OLA on Ritalin. Life did not get better. In fact as the medication was leaving his system in the afternoons he became even more volatile than before. And on top of it all he was bucking bed time even more. Instead of finally nodding off at nine or nine-thirty he was now nodding off at eleven or eleven-thirty (or later). We lasted out the three week trial. Not willing to give up yet she put him Adderall. It was even worse than the Ritalin. Instead of being more volatile in the late afternoons and evenings. The mood swings would come out of no where and they were crazy - sometimes lasting for hours at a time. 
The Wednesday before Christmas OLA went into meltdown mode almost the minute we got out of school. It started with a change in schedule and a "no" to something he wanted to do. The meltdown mode lasted (on again off again) until nearly nine o'clock that night.
At the finale point it ended with me having to pin OLA down on the living room floor, so he couldn't hit, pinch, bite, kick, or head butt  me. He was in tears and so was I. When at last he was finally calm we sat on the sofa and cried. I hugged him and told him I was so sorry that life was so tough for him sometimes. He looked at me and said " Mommy, Mommy, I don't want to be this way!" To this day it still breaks my heart to think about - because I can't bandage it and make it go away.
Luckily we already had an appointment with our pediatrician the next day. And this time I was going armed with information and "Mama Bear" attitude.
During this medication trial period I had contacted the case worker who had helped us with OLA's adoption and ask him if he would do some digging to see if we couldn't find some sort of documentation that OLA's birth mother had drank during her pregnancy.
It took him about a week and it wasn't a lot - but it was enough. He found a medical document filled out by the doctor in the delivery room. On it was a box to list any concerns or problems with the pregnancy and delivery. There were only two sentences in that box. The second sentence stated, "alcohol and cocaine used during this pregnancy".
We had our documentation! When we took OLA to the pediatrician the next day we not only ask to take him off the medication for Christmas break but also firmly stated that we wished to be referred for testing to clinic that dealt with in-uteri chemical exposure!  By the end of Christmas break we decided not to put him back onto any kind of medication until after the evaluation.  But we hadn't yet made it to where we needed to be.

Wednesday, May 4, 2011


Last nights temper tantrum resulted in casualties.  Down for the count is one vase and two tulips.

And one math homework sheet.

I guess it could have been worse!!!

Tuesday, May 3, 2011

The Ever Changing Nature!!

Just when you think you have things figured out - they change the rules! Last night OLA had a tantrum because he couldn't have a cookie. Now there is nothing unusual about having a tantrum. But what was unusual was it wasn't accompanied by the normal yelling, screaming, shouting, and name calling. He simply made it clear  that he wanted a chocolate chip cookie. He did shout this - twice. Then vocally he was quiet. But every available object was launched all over the living room. The basket of clean towels that had yet to be folded, the pillows and cushions from the sofa, pieces from his GI Joe tank, his brother's clone figures from the bay window, his home work, and his books from his school bag, stuffed animals and extra blankets from his room. When I excused him to go to bed he proceeded to do the same in his bedroom. The rest of his blankets and stuffed animals, his sheets and mattress pad, his library books, his Lego's, and any other toys he could grab and fling. All this because he couldn't have a cookie. And vocally silent. Should I be worried? I'm not sure. It seemed so calculate - and yet there was that same wild angry look he always gets when his brain short circuits.
At least the silence made it a lot easier  to maintain my cool. Even with the flying objects it was easier to wait it out when my seven year old isn't yelling insults at me! Don't know what to think????!

Monday, May 2, 2011

First Grade Continued...

In January we met with the principle, the teacher, and three others from OLA's school. We discussed with them the various things we were seeing at home and at school. In particular we were talking about the battles with homework and difficulty in reading . Also staying on task to complete a project.  I must say for the first time in our struggles we felt like and outside source took us seriously and were committed to helping us find some ways of helping OLA succeed.  One of the greatest things to come of that meeting was a solution to the drawn out battles we were having over homework. It was decided that we would give OLA fifteen to twenty minutes a night to complete his homework - if during that time he became to combative or refused to comply - or if he completed only a portion then that would be the end of it for the night. We did not however want him to use it as an excuse not to be responsible for completing work, so any unfinished work would either be completed the next day at school ( and not during recess either - I could now have kissed his teacher for understanding his need for physical release of energy) or he could bring it home again that night and try again. ( This has worked well since some days he is less combative than others). He also began bringing home a sheet or two of uncompleted work and we send it back and forth until he is able to get it complete. This way he eventually stays got up - but with out all the extra stress to everyone. I also began being a scribe  for him on some things , which relieved some of the stress that writing causes him.
We also began trying some other things during morning wake-up time to see if we could help make that transition less painful for all involved. Some things have worked some have not. It is still a work in progress. But the aggressive behaviors still continue - some days are better than others.
I also began an intense reading regime for me on all things that I could get my hands on (that I fell come from legitimate sources) to educate myself on FASD. And I began to try and educate those around us - family - BBA, dad, other select relatives; friends, people at our church, and a couple of his teachers at school. And I am beginning to grow a small library on FASD - with books, DVDs, and articles on this and related topics.
In February I began this blog - at first primarily as an outlet for me, but now my hopes are that eventually it will become part of the growing movement towards helping to educate other about FASD and the dangers of drinking when you are pregnant.
We are now down to the finale month of school. He is currently caught up on all his work and I have only had to sit with him at school twice in the last two and a half weeks. His teacher has moved him right up  to the front of the classroom and right next to her desk (bless her again for this change - that seems to help him stay focused a little better).
We are also are now down to one week before we head to a hospital that has a department capable of making an official diagnosis and giving us some direction and resources to continue to aid him and our family. I can't tell you how excited we are - we are counting the days. I don't by any means think that this will win the war. However, I do think that we may win a battle or two in the war.