Friday, January 11, 2013

The bottom line... the final answer...



Right now, I'm over the mad, I'm done with the crying, and I'm just tired. For now, the fight is over but that won't last long. I can promise you that.

Yesterday was Goofy's Psychologist appointment. The next step on the path to where ever the hell we're going. The night before, after spending the day in between ... things... reading over school evaluation reports and his 504 and his daily notes home brushing up so that I could at least pretend to be prepared, I was feeling pretty confident. "There's no way the doc can't see this," I said to myself. "It's right there in black and white highlighted in yellow. There's no way he can't see," I said. Right about the point I caught myself daydreaming about the formal written request to re-evaluate his eligibility for an educational diagnosis, I knew I was getting my hopes too high. "But there's the proof. Right there in the words of trained professionals," I said. I ended up putting the papers down, saying a prayer, grabbing a beer, running some bath water and walking away. just as I told you I was.

The morning was a bit hectic. I didn't have much time to think about where we were going or what we were doing until we were waiting in line in the waiting room. Suddenly, I'm a nervous wreck. I'm a shaking, fidgety mess of a woman and I am pretty darned sure I'm going to vomit all over their floor. I'm texting my friend freaking out on her and she gives me the best advice she could have given. "Go to your happy place." " :) Ancora impartial." "yes. he is always calm." and I'm ok. I can breathe. It will be fine. everything will work out.

Until I'm sitting in the office, facing the psychologist. I knew something was not going to go as planned when I found out he hadn't seen the school evaluation reports that I told the OT he needed. Everything was depending on him reading these reports and seeing what they said. If he hadn't read them then, what has changed? Nothing. "It's not just ADHD," I say. "I told you, I don't think autism fits. His socialization is too good. That hasn't changed." My eyes tear up, "you're wrong," I tell him. Yes, awfully daring, I know. I heard the words too late to recheck them. In my defense- he's wrong. I don't care about the autism, the autism's not the point. the point is the ADHD. There is something more than ADHD. Something is going on with him, something is there and no one can say what. he has all of these problems and no one can do anything about them. By this point I'm full on bawling like a baby. I'm telling him it's all in the report. The report says everything, I'm telling him the places we've been, the things we've done, the answers we aren't getting and I tell him he doesn't understand. I need something to take to school.

I'm telling him he can't be evaluated for Auditory Processing Disorder until he's 7, he agrees. I say he can't be evaluated for Visual Processing Disorder at all because it's a waste of time because they can't even do anything and it doesn't even matter, he agrees. He says we can see an optometrist, I say it's. not. his. eyes! He understands that but they can check eye convergence. they did, I say, it's in the report! Everything is in the report but no one is listening to it. I say I need something, some kind of medical diagnosis to give to school. I told him that they said he could have OT through school if I get a diagnosis of SPD but he said SPD wasn't a diagnosis. He says it's not in the DSM. I understand that but I need something, something medical and since he said we couldn't have the SPD, he can't have OT. He leans back, spreads his hands, tilts his head, and he says, "Hey, *I* can't control what goes in the DSM." Oh, geez, man! That's not what I'm saying! He says some of the things I'm telling him the people told me just doesn't make sense... I know! That's what I'm saying! and if I had my freakin words I could say it better. I told him they all keep sending me to him. He says they're punting. because they don't know what else to tell me. 

He says, "Stop chasing diagnoses. It's a waste of time." He says that educational is educational and medical is medical. The school doesn't have to listen to anything I bring in. He says get an advocate. Make the school do something. We started talking IEE and I told him I could request one but I thought it was a waste of time because it's all right there in the report. The information is good, the interpretation is wrong. The presumed reasoning for why he does what he does is wrong. The report says he has problems. and he agrees, even just glancing through at the highlighted parts, he sees that. Everything we need is in the report. and he tells me to stay away from the IEE because it's a waste of time. That locks it in to where they don't have to do anything at all for 9 months to a year. because they don't have to do anything while that external evaluation is going on. He says get an advocate. and he prints up some information for me.

I was still crying walking out of the building. I sat in my car with the boys and I cried. We came home and I spent the afternoon and the evening sulking and skulking around facebook and such, letting the kids play as many video games and watch as much TV as they wanted. I talked to a few friends, very few about this because I wasn't ready to talk about it. When I was ready, my friend Bec from Snagglebox was there. There are no real solutions, no easy fixes but I think I've got a handle on what has already happened and I'm to the point that I'm thankful that I finally got the direct answer I've been begging for. Thanks, Bec. What would I do without you?

This morning I overslept, Alex missed his bus, Goofy had 10 minutes to get ready, ended up running for his bus, and I forgot to give the little turd his ADHD medicine. Back to normal. What would we do without our daily routines to wrap their comforting arms around us, right?

23 comments:

  1. Our online friends are a great comfort and resource. I have been so glad to have you as mine, and I am doubly glad that you have some that you can turn to when you need help. Pretty much all I can do say "I hear you. Hang in there. You are a fantastic mom and advocate." Because you are, no two ways about it. I could wish this was easier for you and for Goofy.

    ReplyDelete
    Replies
    1. Thank you! I want to give you a big, fat hug right now.

      Delete
  2. The biggest stressor (stresser?) for us was always that the next specialist would be able to DO something concrete. He/she'd be able to start the ball rolling...but it was always just rolling the ball to the next person...eventually the ball starts rolling, but getting there is so painful.

    ReplyDelete
    Replies
    1. Jim! You're following my blog!? I'M POPULAR!!! *happy dance* Bec! did you see that!?

      Thank you, Jim. It is painful. I think the worst part, aside from the no's, is not knowing where to go next. Eventually, the ball *will* start rolling. Thank you for that.

      Delete
    2. No way! Not Jim OF THE TARGET POST?? You lucky girl.

      Delete
    3. YEAH! THE Jim OF THE TARGET POST!!!! :D

      Delete
  3. "The information is good, the interpretation is wrong." That's exactly hitting the nail on the head. You don't need to collect any more information, you need to find the right person to interpret it. This whole thing has been so incredibly frustrating for you, and I can't believe you're still holding it together. Lesser people would have gone insane by now! I wish it was easier, you try so hard and put everything you have into this. I'm glad I happened to be there when you needed an ear, thanks for sharing it all with me :) Sending you a gigantic cyber-hug with a couple dozen shot glasses.

    ReplyDelete
    Replies
    1. Thanks, Bec :) Seriously, I really don't know what I would do without you. Through this whole mess, you have been there. You have talked to me, given me advice, provided me with information, told me when I was losing it, encouraged me, and praised my efforts. You have watched his videos and given me ways to work with him that I would never have thought of. You are amazing. *You* are the reason I have not gone insane and given up.

      Delete
    2. Awww that's so nice! You've been there for me too :) I've always got your back.

      Delete
  4. I hate the dance between medical and educational when it comes to a diagnosis! Look at the kid a whole being not in pieces. Get a grip on the overall and forget what camp you are from. The only team player that matters is the child!! Nuf said!!

    ReplyDelete
  5. I feel you on this one. As you may or may not know, we still do not have what I would call "a clean" diagnosis on one of my boys, who is very much like your Goofy in the ADHD/something more department. The reality is that children like this often have to wait it out for services, for help, for more stable diagnoses. It is not fair at all, but it is where we are now, so we as parents do our best to fill in the blanks. I try to look at it as just a longer part in the process. With one of my sons, it is easy to see he is Autistic, and with the other, there is going to be more work in that "red-tape" area of the journey. Give yourself some time to recover from all the stress too.

    ReplyDelete
  6. Sorry to hear, and hugs! The whole educational/clinical crap is a nightmare, and I imagine even more so with the DSM V......I wish you luck and I am sorry ur day was so rough.....

    ReplyDelete
    Replies
    1. Yeah, I'm not looking forward to that change at all :/

      Thank you!

      Delete
  7. I'm so sorry you're having to deal with all this!

    ReplyDelete
  8. I got a parent advocate and I seriously have cried at every iep meeting but Idk this time having her knowing she was backing me up infront of a team that I felt wasn't understanding me was soooo helpful I actually felt anger this time because I get tired of beating a dead horse. But I got teary eyed reading this you're not alone. Been there done that beat the steering wheel pulled over cried until my kids told me I needed to stop but they don't understand the fight I constantly have for all 3 my kids but if I don't try to scream, fight, or try for them period I wouldn't feel like I was doing my job.

    ReplyDelete
  9. Hang in there and keep on keeping on! You will get the diagnosis. This is the same thing I went through with my son. It's nuts! I don't know why it has to be so hard.

    ReplyDelete
    Replies
    1. Neither do I , Kristy. Thank you :)

      Delete
  10. I also had the same issues and you do need an advocate to help you. I am very blessed to have a wonderful doctor who will Advocate for Jayden in a second. Jayden has an IEP but it does not say "Autism" any where on it. It says "Other" which can keep him from getting some of the help he needs but our doctor called the "OCR" (I think that is right name) and we had an attorney free of charge to get his One on One time he needs. I just went to his doctor and signed a paper saying she could be his Advocate and she is all over it. The paper just said that any help or assistance he needed she could help set up for us so even if you get diagnosis the school system does not have to acknowledge it. They do there on test and come to there own conclusions Ha Ha!! Keep Fighting and God Bless. If you would like I can check on the attorney it is a group that speak out for special needs. Just let me Know

    ReplyDelete
    Replies
    1. Thank you, Nana! I just might be coming to you for advice :)

      Delete