Wednesday, June 29, 2011


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?!?!?

Thursday, June 16, 2011

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.

Monday, June 13, 2011

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!!

Sunday, June 12, 2011


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!

Wednesday, June 1, 2011

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