Wednesday, April 6, 2011

Am I really the expert here?

Am I really the expert here regarding my son? I keep reading these posts and blogs and IEP helpful resources that say you are your child's advocate and you are the best expert about your child. God, I hope not. That in itself is a scary thought because if I'm the expert he is really screwed. Yeah, I can point out all of his crazy behaviors, his weaknesses, and his short-comings but I have no idea what to do about them or how to fix them or if we need to fix them or why he does and doesn't do certain things. So please stop looking at me for answers. I really don't have any.

Joshua gets dropped off at school during the before school program ran by the community center. We started doing this to give him a chance to ease into school instead of being dropped off and immediately sent to class to begin morning work. This way he gets to go in and play games and if he's going to meltdown at least it's not in front of all his class mates.

For the most part, Joshua behaves pretty well at school. He listens and follows directions. Right now, I felt that our biggest problem was the stupid potty accidents (see I can't go a single post without mentioning it).

Until the phone call last week.....the lady who is in charge of the before care program calls. They have been really great with Joshua. However, it turns out Joshua has been having a few issues. Here is how the conversation went.

Lady: Joshua has been withdrawing from the group play and going over to sit by himself and not particating.

Me: He has autism.

Lady: he's been trying to run out the door into the hallway.

Me: He has autism.

Lady: When it's time to line up to go to class he runs around the cafeteria like it's a game and doesn't listen.

Me: He has autism.

Look, I'm not using autism as an excuse here. I get it these are new behaviors that you are seeing during your time with him. I know he has not done these things in the past and other than melting down during drop off he's always been pretty good about participating and listening. But these are the behaviors we see at home. My guess is he is starting to feel really comfortable and acting out. I have no answers for you. I haven't figured out how to deal with these issues at home so I don't know what to tell you. sorry.

Joshua's annual IEP meeting is next week. I know I'm supposed to get prepared. I have his current progress reports and his current goals. I have no idea what to expect for first grade or what services I should be fighting for. I have a feeling most of our IEP meeting will be about his potty accidents. And they will be looking to me for answers and all I will be able to say is...

He has Autism.

So to end, I am pleading can someone else please take over the role as expert because I clearly suck at it.


  1. Actually, you have to become the expert or they will not provide those services you need. You have to learn what documents are required to get services and equipment and then demand it done. You have to learn what services are provided and the rules governing them... and demand it done.

    Things to ask for and always followed by "who, what, where, when, why and how":
    1. supervision in class and yard - to deal with elopement and socialization.
    2. SLP services/communication - child's ability to communicate with others.
    3. communication - btwn parent/teacher/school/service providers
    4. OT - equipment to deal with sensory issues. reports that tell you what sensory issues the child has.
    5. Education goals - 3R's and how you are going to get them taught to him.
    6. Who's going to teach him - regular class - with or without aide, or self-contained. We went from regular to self-contained... ironically we are getting a much higher level of learning in the SC class than we did integrated. Eldest is still regular but he's caught up academically.
    7. Long term goals - 1. My eldest will be fully independant; 2. The youngest will not. But for each I have long term goals and an idea of how I want to get there.
    8. Self-help skills, social skills teaching.

    Again... you want all the wh's answered and how... for these and any other's you think of.

  2. This is why I spent all my time researching, going to conferences and resource fairs, etc, etc. *I* care about my kid, ME. Not the school. No matter how nice they are, your kid is just another # and another $ sign. When I didn't know the law, my rights, what my kid needed, we got screwed. No one is looking out for you. It's also why we hired an advocate, so I would have at least one other person on our side. It fortunately, or unfortunately, does fall to us as the parents to be our child's best advocate. Sure I have no life outside of Autism right now, it seems, but it's really my FT job.

  3. Jen, I thought you knew me better. lol. I was just attempting to be a little witty. Of course I'm my son's best advocate. Of course, I research and prepare for meetings. Of course, I find it overwhelming and doubt myself. I read, research, go to seminars, etc. I do have a parent advocate who attends meetings with me. However, I do find it overwhelming and doubt myself sometimes.