Sorry for the long absence. Virus, internet, & computer trouble finally got fixed. I tried to blog from my phone, but that didn't work so well. Facebook & Twitter work just fine with a phone, but blogger not so much. Honestly I don't know where I left off, so here is the quick version update and then alot about our news today. Warning most of this is about my son, Peter.
I am doing a rewrite of Patrick's Rose and hoping to publish it mid December. Hope is in college and just got mid term grades-- all is great there. I am recovering from seasonal allergies (really bad this year). Megan is in college also and starting her second class online (she takes one course at a time and they take about seven weeks each), teaching Bradley Method Birth classes, and thinking of becoming certified as a Doula. Tory got a dog bite about a month ago, had seven stitches on her left leg, but it is healing nicely. The stitches came out about two weeks ago. Peter just finished up soccer this week, and during September each Monday we visited a psychiatrist to do testing to evaluate the extent of Peter's disabilities.
Today Todd and I sat down and listened to the report.
Let's face it. I didn't expect the report to be great. We went there to find the depth of the problems we have to deal with. We know Peter has Cerebral Palsy, and we know he has impairments in his vision, brain, and scholastically at the very least.
I hoped my worst fears were overreactions. I'd hoped that things were better than I thought. That is what I hoped...
The reality isn't what I hoped.
Todd and I were told that our son has severe ADHD. On a hundred point scale rating system where fifty or higher is ADHD he scored a ninty six. He is seriously socially impaired, and has a severe intellectual disability. That was our news today.
We were told we needed to find a support group for parents of children like Peter. We were told that the most we could do was get him to a fifth or sixth grade level. That he would more than likely need community help even as an adult. That sometimes 'children like him' can be independent as adults with community support. We were advised to apply for social security disability for him.
I could say that today my dreams for my son died. OR that they have to change to face this new reality. Yet I can't.
Through all the struggle, and through all the battles I have believed that God placed him with us so that we could help him achieve something better than he would have had otherwise in a Bulgarian orphanage. I truly believed that we could help him to be self sufficient and to be able to accomplish something significant for himself. I believed this with all of my heart and that has been the goal I've been working towards.
I know we are going to have to reevaluate the way we go about this goal. We are going to have to build in alot more interventions than we thought before. And if we have a chance of being able to make it possible for him to be independent and self sufficient we are going to have to apply for disability for him to help with the cost of the interventions. But I cannot give up the dream.
Maybe it is denial. Maybe it is me not realizing just what we have been told today. I can accept that the disability is real. I just cannot accept that there is nothing we can do to change it for the better. I cannot believe that eventually he will have to go live in a group home, or that he will never understand the things adult people talk about the way my girls do, or that ultimately he will not understand things better than my little Tory when she gets a little older.
If I accept it really desecrates everything I have believed we were doing. If all he can do is live a secondary existence in a home where men are treated like boys and work a job that most teenagers out grow for college for the rest of his life, what happens to his dreams? He wants to help kids like himself overcome their disabilities. It is such a worthy dream. Do I just help him throw it away? Do I discard it like rubbish?
I have been the one to make him believe we could work on it and overcome. I've made him believe that everything in his heart is possible, and now I have been told I have lied to him.
Sorry-- pause-- The tears are truly overwhelming right this moment. My world feels shredded and pulverized, and though once in awhile I've been accused of over-dramatizing, this is not.
As a child I was taught to overcome. Now do I tell my son I was wrong? That I was raised wrong? Do I stop believing what has led me to conquer all the obstacles in my life? Do you I stop when it was this attitude that caused us to be able to heal his sight? It was this attitude that allowed him to read. It was this attitude that encouraged him to try soccer, and this attitude that believed we could change his bad behavior. Do I give up my hope and accept this diagnosis as it is?
The psychiatrist simply said it was genetic as if nothing more could be done. 'These children you can get to a fifth maybe sixth grade level.' In the report more was expounded. He would ultimately live in a group situation and maybe be able to partially support himself with help with finances and self care. I wanted as I read the words to die-- just to stop breathing. All this time had I had him believing a pipe dream? All this time was he right? When he told me he was dumb, 'a retard' (his words not mine.), could he have known something I could not accept? Yet, I just cannot accept that! I can not tell my son that his worst fears are reality.
Some how we have to find more answers to allow him to grow up to be able to get to his dreams and be able to be an adult that is self sufficient. That is all I know. I can not just lay down and accept---
I have to keep believing and working for the best. Otherwise that would mean to give up on my son and just no. To many have given up on him already. That is not me.
That is all I know. I will try to post soon with more about this event, but I think this is not going to be an easy or quick process.
If anyone out there reading this has any insight, please share. Even if I do not agree I will appreciate the thoughts. Who knows? You might have an answer I didn't have a clue of.
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