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!!!