So Frustrated!

The Oldest Island Boy was born 10 weeks premature and while we were very fortunate that he had no major medical problems as a baby we were told that they had no idea what - if any - long term problems he might have. When he started kindergarten we realized that he has some sort of learning disability. He retains any info that he hears but reading and writing have been a real problem for him. He was having a lot of trouble keeping up with the other kids and we had him repeat kindergarten, hoping that he would catch up. By the middle of first grade he was really falling behind and starting to have a lot of confidence issues because of that. The school ran all kinds of tests on him and in the end the guidance counselor told us he'd never seen a learning disability like this one before and that he just didn't know what to do about it. The final plan came back that the Oldest would just keep repeating first grade and for 30 minutes a day would work with the learning disability teacher and that eventually he would be able to move to the second grade. The Island King and I were not happy. Just keep him in the first grade forever? His learning disability isn't like any you've seen before but Oh Well? No one had any idea how to help us and it wasn't long before we realized that not only did they not want to help us - they really didn't care what kind of problems he was having and just wanted me to shut up and leave them alone. The Oldest started having serious self esteem issues and it wasn't much longer before I had a meeting with the school principal, told her that their big slogan of "No child left behind" was bullshit and pulled him out to homeschool him. His self esteem issues quickly resolved but his learning problems have not gotten any better. If I read to him or he watches a video of something he retains everything but he still can't read himself. Something happens between the pages and his brain and he can't make any sense of it. When he was in school I suggested that perhaps he's dyslexic but was told by the school learning therapist that there is no such thing as dyslexia and that couldn't possibly be the problem. In the three years since I started homeschooling him we've had him tested by all kinds of doctors and all agree that he has some kind of disability but they all say they've never seen anything like this before and no one knows what to do for him. Meanwhile, he's learning 4th grade history and science - as long as I read the info to him and passing his tests with straight A's. He's very smart and you'd never know he has a learning disability unless you ask him to read something. We spend many frustrating and heartbreaking hours working together on simple sentences like The Cat In The Hat and I have to reteach him basic sounds and letters every day. His speach is fine and he can pronounce any word he hears but when he looks at the word on paper he just doesn't recognize it at all.
Not too long ago I found a state run organization for kids with learning disabilities and called them. My hopes were that they would be able to help me understand what's going on in his brain and teach me how to teach him. The woman on the phone was very understanding and when I explained all of this to her she sounded like this program might be able to help. We set up a testing session for him for yesterday and I was really excited - maybe, finally, someone would be able to help us.
The Oldest, the Island King and I drove over to Fort Walton for the appointment and for the first time in several years I was really hopeful that someone could help us. We got to the office and when we walked in the woman behind the desk said "I tried to call you 40 minutes ago and you're phone went straight to voice mail" She said it in a really pissed off voice and I said "Is there a problem?" We were right on time for our appointment and I couldn't understand why she was so pissed off. She never introduced herself to us or anything. And I don't like being yelled out when I walk into a room. The Island King touched my arm and I knew he was trying to warn me to stay calm. The woman led us into a room and immediately told us that since the Oldest had been tested in the school system several years ago that she couldn't help us and that she'd tried to call and tell me that so she could go on back to Pensacola instead of having to wait until I got there to tell me this. I explained to her that yes, he had been tested but that the school people had never seen a learning disability like this and they couldn't help me. She very rudely told me that all her organization does is give the same tests that the school system gives and then refer us back to the school for a learning disability class. This is not what I was told on the phone at all and tried to explain this to her but she interrupted me and repeated what she'd said and that I had obviously misunderstood the woman on the phone. The whole time she was talking to me she was glaring and seemed really mad that I was wasting her time. The Island King stood up and said "Let's go - she's not going to help us" but I wasn't ready to give up. I told him to take the Oldest and go on out to the car and wait for me. They left and I asked this woman if she had any info she could give me that could help me find someone who could test him and help me figure out how to help him. I told her that I feel like the school system has already failed us and that's why I came to this organization. She snarled at me that all she could do was refer me to the school system and that even if she knew of someone who could help me she couldn't give me that person's name. And then I swear I had an almost out of body experience. It was like I was hovering over the two of us looking at all of this and for a fraction of a second I thought I was going to snap. I mean a true psychotic snap. I wanted to grab this woman and smash her head against that table and keep smashing it until there was nothing left but a bloody pulp. I don't think I've ever wanted to hurt someone that bad in my entire life. I leaned over real close to her and told her that she was the rudest, most uncaring individual that I'd ever encountered and that it was a damn shame that people who have children with disabilities have to deal with someone like her. Before she could respond I told her that I hoped she rotted in the lowest level of hell and I walked out. I slammed the door so hard that the entire building shook and stormed to the car. I got into the car and burst into tears and the Island King said "Do we need to leave fast? Are the police coming?" It would have been funny but I could tell by the look on his face that he was serious and was pretty sure I'd just killed that bitch with my bare hands. I told him that I hadn't touched her, trashed her office or threatened her life and that No, the police wouldn't be coming. I was trying to control myself because the Oldest was sitting there but I was a blubbering mess. I finally got myself under control and the Island King and I took him out to lunch and explained that none of this is his fault and that we will move heaven and earth to help him learn to read.

This whole thing is SO frustrating! It seems that no one can help us. Unless a child has a distinct disability and can be put into a certain slot these people just don't know what to do. After reading the information about this organization I had such high hopes that at last someone might be able to help us. When we got home I called the woman I'd spoken to originally and told her that the woman we met with never introduced herself to us, practically bit my head off when we walked into the room and that it seemed unusually cruel to make parents who are already dealing with a difficult situation have to deal with such a cold hearted, uncaring, unhelpful woman. She was very apologetic and asked if I wanted to write a letter that would be put in this woman's file.
You bet your ass I wrote a letter. I had to rewrite it 3 times to keep from sounding like a lunatic but the final version came out pretty good LOL I didn't let my emotions get the better of me in the last letter and it really paints this woman for the bitch she is without me sounding like a crazy woman.

So today is a new day and the Oldest and I will be working on what letters look like - again. I'm also convinced that maybe he is dyslexic and so I'll be starting some serious research on that too. The Island King and I were talking about all of this last night and I guess I'll just have to continue my own research and it will be up to us to figure out what's wrong and how to teach him. The medical doctors we've seen say there is nothing wrong with him that they can find so they've been no help either.
I was really hoping this group we saw yesterday would at least provide some kind of support for us because I feel like we are completely alone. The Island King summed it up when he said "It's just us babe, no one else gives a damn"
The good news is that we give a damn and we will never stop trying or give up on the boy.

Ok so that's my rant for today. I really needed to get that off my chest.