2 steps forward, 3 steps back

As I mentioned in my last post, an assistant behavior analyst (assists the child psychologist) came over this morning to "evaluate" Jayden. Let me apologize now, in case this post gets choppy. Such are my feelings at this point...

Okay so first of all, let's all be sure that we understand what an "evaluation" is. I've turned to my friend Merriam-Webster for some clarification:

Evaluation-to determine the significance, worth, or condition of usually by careful appraisal and study

Okay. So, in preparation for this "evaluation", I brought out his table from the garage. We refer to this table as the learning table b/c I now only pull it out when I'm doing some ABA therapy with him (the reward system) or when I want him to be seated for certain activities, which is very difficult for him to do. I figured, since she is "evaluating" him for behavior therapy, then she will want to see how he would respond to such therapy...you know to test the significance maybe?? But I digress. Here's what happened instead.

She walked in, a very sweet lady I will add, and took a seat on our love seat. I thought she'd at least get on the floor at his level, but I'm not the professional here. Jayden did look at her. He did smile at her. He did run around and laugh and show off for her. Typical Jayden, typical 2 yr old behavior. She was barely in the house for 2 minutes when she said, "Okay I'll be straight up here. This is not autism. I disagree with the notes from this Dr. He's looking at me, he's socially interacting (b/c he was bouncing around and looking at us for our reaction), he brings you things (he brought me his shoes), and he's talking. That's not autism." Well slap me in the face and call me stupid. From everything I've read and been told by the developmental pediatricians, autism has a VERY wide spectrum. A child can be completely nonverbal, lack eye contact completely, and have a total lack of cognitive skills. On the other hand, some autistic kids talk better than typical children yet they cannot handle social situations. In Jayden's case, he can talk but he has a speech delay. He has eye contact, but only when he's in complete control. He only has a small cognitive delay. He has social anxiety and behavioral problems. The problem is that autism is only portrayed as a nonverbal, totally isolated child, but that is hardly the case. So the lady goes on to ask me "So what does he do to make people think he's autistic?" What?? Okay I'm being patronized now, it seems. I told her the main issue is his extreme social anxiety and his temper. She again says "See, that's not autism. Autism follows a child where ever they go, not just in public." At this point, even the early intervention case worker chimed in and said, "Oh he acts out at home as well, today must be a good day for him!" She was surprised to witness a bad day for Jayden just a few weeks ago and it was a shock for her, no doubt. The lady then says, "Those are all typical 2 yr old boy behaviors." OMG!!!! I wanted to kick her ass out of my house. I literally had to pick up my mug of coffee and start drinking it so I wouldn't say what was about to come out of my mouth. The thing is, I have come too far to have her to come in my house and bring me right back to square one. For too long, I've had people telling me that this is all typical...the fits of rage, the screaming, hurting himself, banging his head hard enough to knock himself out, busting my lip and giving me nose bleeds, not wanting to go anywhere with a crowd, every.freaking.day. I can understand every now and then having a bad day but every day?? Seriously, if all of that is typical then why on earth would anyone want to be a mom?!?! I then corrected the lady and told her that the Dr diagnosed him with PDD-NOS, not autism, and that I understand that the diagnosis mean that he does have some autistic behaviors, and he does indeed, yet he doesn't have enough to put him on the spectrum. Then I told her, "Honestly, I don't care what you call it, I just know that we need to get him the help he needs b/c this is anything but typical." I also told her how offended I get when people tell me that he's a okay simply b/c they see him when he's having a good day. I told her to come around when he's having a bad day and you will see what I go through. Honestly, just like what happened with the speech therapist. They didn't see any of the behaviors I mentioned in his first evaluation, but once she started to come more often, oh boy did she see the behaviors. WTF is wrong with these people? They are supposed to be professionals, trained to work with these kids. I know that Jayden is not a totally unique case. I know that there are kids who have good days and bad days. Jayden mostly has bad days, but just like a broken car, it's going to act right when you take it to the shop. I don't care if she doesn't think he's autistic. In fact, that gives me so much hope, but don't come in here telling me he's typical and doesn't even seem like he needs therapy just b/c you happened to come here on a good day. Perhaps if she had actually done a real evaluation she would have seen what she needed to see. But, even without the eval she saw it. I knew it was coming once he grabbed his hat...

He put on his hat and started to be naughty. Started throwing his ball really hard, beating his train on the table, and trying to hit the lady. I would tell him to stop and he would ignore me. I had to repeat my self several times and Jayden avoided eye contact with me. He would hold his head down so we couldn't see his eyes from under that hat. AHA?? Yeah. But who picked up on that? The case worker did. She's trained to fill out paperwork and claims and such. But she picked up on the fact that he uses that hat to avoid eye contact when he isn't in control. Jayden started wearing hats like that when he was having speech and OT once a week. He would wake up and immediately look for a hat. It had to be b/c he knew he would have therapy and he wouldn't be in control. He ALWAYS had a hat on his head. He stopped wearing the hats about a month after they stopped coming and now he just grabs them as needed, like this morning. So I knew his mood would start to change at that point b/c he was no longer in control. She started telling me about a program they are going to start soon at UMC which would be almost like a preschool for autistic children(she slid in a sly remark to Jayden ("that's if the Dr thinks you would even be a good fit"). They would provide ABA therapy and socialization skills for a few hours, two days a week. While she was telling me about this, Houdini somehow opened the gate to get into the kitchen and came back into the living room with a box of Lucky Charms. I told him he couldn't have the Lucky Charms (they aren't Gluten Free) but I handed him his bowl with his chex cereal in it. It (I came back and re read this and saw that I typed "it" instead of "he"! I'll leave it b/c it's funny and I need a laugh) fell out on the floor, kicking and screaming and slapping himself. I was holding HIS bowl of cereal out to him and the lady had the nerve to tell me "You shouldn't give him what he's asking for when he has a fit. You are encouraging the behavior." Say wha?!?! I snapped. I said "Oh he's not asking for this cereal. He's asking for the Lucky Charms and he cannot have that. I'm offering the alternative." Is that wrong??? Really?? I guess all of the parenting books I've read are outdated! So then she says "Oh okay, well maybe you should try to keep the cereal he cannot have out of his reach." Before I could say anything the case worker said "Well she did have the gate to the kitchen closed. He opened it." WHEN DID THIS BECOME A PARENTING COURSE??? WHAT HAPPENED TO THE EVALUATION?? So as he is having the fit which included him flipping over his learning table and throwing a chair, I told her "Imagine that happening in public b/c it does." So then she decides to give me pointers on what to do when he's having a tantrum. First she said put him on the floor. Easier said than done when you have a thrashing child flinging his head all about. The only way I can get him to the floor at that point without putting myself in danger is to push him on the floor and risk him getting hurt. I won't do that so instead when I try to put him on the floor I get a bloody nose or a busted lip. Then she says, don't look at him when he does it. Well, when I see him acting that way I get angry at him and I question God. I don't like to do either of those things, so believe me when I say that I DO NOT look at him when he does it. Then she says, well it's okay for you to go to your room and close the door when he's acting like that. And once he stops you can come back so he will learn that mommy will disappear when he's misbehaving. Lady, I appreciate all of your advice and I know you mean well, but do you really work with children who have behavioral issues?? Really? I don't think you do b/c let me tell you what happens when a door is closed in Jayden's face in the midst of a fit...Things get broken!!! At my mom's house, I had to put him out of the bathroom b/c he was screaming and throwing things in the tub while I was trying to take a bath. I put him out and closed the door and all I heard was him SCREAMING through the house and glass breaking. He knocked over my moms vases and flipped over my niece's book shelf. By the time I came out of the bathroom, which wasn't long since I heard glass breaking, he was hyperventilating. Very typical of a 2 yr old tantrum?? Another occassion, in the military lodging in St. Louis, he started screaming and I asked him to stop which resulted in louder screaming and kicking me in the ribs so I put him in the room for a time out and shut the door for his safety b/c it was a 2 story apt. Well he continued to scream and I could hear him in there beating his head on the wall. I had to go in there b/c I was afraid he was going to knock himself out, seriously. And should I mention the time he was put in his room at home for giving me a bloody nose? Let's just say that the train table was upside down and the elmo table and chairs had were thrown all over and we're lucky a window wasn't broken in the process. I told her, "At some point, I have to be concerned about his safety." It's not that I don't "think" any of her pointers would work. It's that I've been dealing with these behaviors since Jayden was a yr old, so I've tried it all already and I know what will and what won't work. These behaviors did not just pop up a few months ago. I've been fighting for help for a very long time. She came in here, just like other outsiders, and judged my parenting. I'm more hurt by her actions b/c she is supposed to be trained to work with these children. I told her, "I know people judge my parenting, but they have no idea that sometimes I just have to do this or that to avoid having him hurt himself (or me or someone else's child)" I am not proud of Jayden's behaviors and I have blamed myself for too long. I pour my heart out on my blog and don't censor anything bc it's usually my only outlet. My husband is just as lost as I am. There is no control. And to have people to tell me that he doesn't need help just makes it all worse. Just when we finally thought that people were hearing us, We fall on deaf ears once again. I seriously have to get out of MS for MY sake!! This has been too much of a fight and I am exhausted. He was referred for a reason. Now whether you agree with that reason or not does not matter, but he was referred so you have to provide him that service. However, at this point I'm not sure if I want them to work with my son. That 1.5 hour drive to Monroe sounds so much more appealing.

Oh and BTW, my lip was busted again as we were leaving playgroup...