FASD Awareness Day!!

September 9 is National/International Awareness Day.

Every year on September 9th, International FASD Awareness Day is observed. Proclamations are issued in countries, states, provinces, and towns all around the world. Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska. People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD). The first FASDay was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

Remember 0 - 4 - 9 . Zero alcohol for the Nine months you are pregnant!

FASD's are 100% preventable.

Third Grade

Well third grade at our house started with a bang. OLA went back school and all heck broke loose. Both Sunday and yesterday we had some of the worst melt downs we've had in ages. What a mess. Starting school comes with both good and bad multiplied by about a million (slight exaggeration I know - LOL). I like it because I get a much need break from the chaos. But I hate it because the major battles begin once again. The worst is that we haven't even started with homework yet (that won't be for a few more days - oh joy of joys!!!). This year could be a real deal breaker. The concepts start to become more abstract, the work is harder and more of it, the teachers less forgiving, on top of it we have a new Principal and obviously a new grade and teacher. The stress level has been high around here for several days.
The one thing that I hope will be a real plus for him this year is that his teacher has a special ed endorsement. He's in a regular education class but the teacher has had extra training in special education. I hope this becomes a positive thing for him and his success this school year. We will have to see - for now we are cautiously treading water. Maybe the large waves will gives a break for awhile - cross our fingers and throw me a life jacket!

That's All!

Tired, and stressed,

Tired, and stressed,

Tired and stressed.

That's all!!!

The Dance!!

Why is it that it is so easy to dance around the issue but not put a name on it. For two years now we have been working with “professionals” to find appropriate help for OLA. They have given him an alphabet soup set of labels. But refuse to give the one label that should most likely be on there – something on the FASD spectrum.  The behavioral specialist even went as far as to say we were “definitely seeing FAE” but when the papers from his office arrived was FAE listed anywhere – NO!  The geneticist told us that if they ruled out everything else they were testing for then it would be FAS. Have we ever seen paper work stating FAS  - even though we received paper work ruling everything else out- NO! They dance and they dance and they dance but refuse to admit to the elephant that is sitting smack dab in the middle of the room. Why is it so hard to call a duck a duck – why do they insist that it is a goose.
This is what I wrote on a list serve group last night. It has been a very long couple of years. It is so frustrating to be playing this game. I just don't understand why those we've seen can not seem to admit to what seems obvious to me. Are they afraid that the label will bite them.   You can't kill a dragon with a mouse trap. It is much easier to tame a dragon when you see it for what it is.
No the label won't change the behaviors and other issues but it would eliminate those things that aren't remotely helpful.  Every time we see a different specialist we start out with such high hopes that maybe we are on the right road. The last two years (and more before we knew what was going on) we have danced this dance time and again. It has been a very long and exhausting road with no real end in sight. Dancing in the waves holds no joy when you feel like you are drowning.

Burnout!!

I feel so tired and burned out. I feel stressed and depressed. It seems that for every three steps that we take forward we take two backwards. Yesterday morning was the first Sunday morning in months that was actually relaxing. It was the first time in months that I haven't gone to church worrying about what OLA would do and who would be making a judgement call about my parenting when he was running up and down the hall or misbehaving. It was the first Sunday morning in months that my stomach wasn't tied in knots and I didn't have a massive tension headache. It was a relief to just stay home and not have to do any damage control or intervention.
Now I'm torn between really liking church itself (so wanting to go) and just staying home so I don't have to fight those giant waves every week. I wish things were different some how but  they are not. There really isn't any relief and no one I can really turn too. I feel so very isolated. There really isn't anyone who understands the how depressed I feel or how much my heart is breaking. I don't very often vocalize my needs when OLA's needs are so great. But I need understanding and a listening ear. I need people to understand OLA and FASD. I need respite. I need friends not criticism and judgement.
I just want to cry - maybe like I said I'll quit swimming and just sink to the bottom. I'm so tired.

Sluffing!!!

Today, I am sluffing church. I said I was finished last week and I still feel that way. Although I would have been able to go without the stress of OLA. Both he and his BBA are sick today. I can leave BBA with OLA when they are both sick for a couple of hours. So it would have been a peaceful day. But, also gave me a perfect excuse to stay home. So I took it. I am really just tired. Some times swimming is just plain hard work. It has been a really rough couple of weeks. Coming up on the finale days of school for this year has really thrown OLA for a loop and keeping him on an even keel has been a dicey dance at best and an all out war at worst.
On a side note we are going to see the pediatric behavioral specialist (at the children's hospital) again tomorrow. I don't know which direction things will go as we work with him. OLA still is not on meds and in many ways that is good. But if there are meds out there that would help him regulate better (without major side effects:( ) that would be good as well. We have been approved for a service dog for OLA and are currently fundraising. However, the process is long and slow. The fact that OLA appears normal, I think, sometimes act as a deterrent to our progress. People tend to look at us like we are crazy when we talk about him having disabilities. And think that he has no need for the help a service dog can provide for him. But we keep pressing forward through the waves with faith that we will some how make it and make a difference for him.
But, the constant battles on one front or another make me tired and sometimes sad. So today I am sluffing church. We will have to see what next week brings.

Nothing Like . . . .

There is nothing like Mother's Day to make you feel like a failure. Today was one of those days where I think I'll just quit swimming and let myself drowned. I don't even want a life preserver tossed to me. Church has become one big colossal joke. OLA can't/won't  (however you want to look at it) sit still, he won't stay in the children's class.  I just don't want to fight it anymore. I'm so tired of the looks, the questions, and the if you would only?  Let's face it when it comes to being a mother to OLA I am just one big, old failure. I obviously don't know how to get it right.  I love that little man - I would do anything I thought was in his best interest for him - but obviously I'm no good at deciding what is best for him. Others have all the answers to what is best and I flunked that course in school.  I hate Mother's Day and I hate Sundays. The wave was big today and I think I'll just sink to the bottom and never come up for air. I'm done!!!!