Complaint #637...

Seriously though, I don't think I should have to file a single complaint with Early Intervention. They should just do the job they are supposed to be doing and mainly, I think they need to be careful when choosing their contracted providers. This complaint just HAD to be filed though because it was going a bit too far...

To refresh your memory, check out this entry. From there you will see that the behavior analyst disagreed with the Developmental Pediatricians diagnosis from the very beginning and she just can't seem to put her opinion aside and provide the care that she is supposed to be providing for Jayden. Instead, she seems more focused on proving why she disagrees with the diagnosis. Last week she took it too far though. At the beginning of October, we asked her to switch his services from the clinic, to our home environment because we were still struggling with the behaviors but she had yet to see any in the clinical setting (play room FILLED with new toys). She agreed. She came the following week and only stayed for 15 minutes of what was supposed to be a 45 minute session. The following week, she cancelled 15 minutes before the session was to start, saying that she wouldn't be able to get out of her office on time. So really, no real excuse to cancel the session. She came last week and stayed the duration of the 45 minute session, but spent most of it telling me that he didn't need ABA therapy "because I work with kids on the spectrum and we never get as far as I've gotten with Jayden." To that I replied, "We have not addressed his behaviors and that's my concern." Then the finger pointing started. She said that maybe his speech therapist is boring. That his OT should be doing more behavior stuff with him. And this is the one that pissed me off...She asked if he gets into trouble at MMO. We told her no (but found out Monday that he has been getting into trouble) and she said, and I quote, "Well, it must be something about you two." I swear my face turned red. I wanted to tell her off right there, but I held back. I did say I don't believe it's just us and that the behaviors need to be addressed. Jayden ran to the potty at that moment and couldn't get his underwear down on time so I had to go help clean him up and she used that as her que to leave. I had no closure and she didn't tell me what her plan for the next session would be since she felt he didn't need the therapy. I just knew that she wouldn't come this week. So yesterday, 3:13pm, my phone rings. It was the clinic and I was tempted to pick up the phone and say "Are you cancelling again?" but I didn't. It was the receptionist from the clinic saying that the therapist called the clinic and told them to let me know that she wouldn't be doing home visits today. No reason why, just that she wouldn't. And when she cancels, she never makes up the missed session, so it's just a lost week. To me, it seems like she is not taking Jayden serious b/c she doesn't agree with his diagnosis. I said in my post above, that I would deal with her as long as she provides the service requested. Well, at this point she isn't, so I cannot deal with her or have her wasting my son's time. I filed the report yesterday and got a call this morning from the Dept of Education. The lady basically said that she is the only person in the state that does behavior therapy so they spoke with her and she told them that she is willing to come to my house at the scheduled times along with the speech therapist, so that she can show the speech therapist how to work with him. That's BS. I told the lady that the behavior therapist has not touched his behavior issues. Instead, she points the finger. All the lady could tell me was, she's the only person they have. This is why I have to get out of MS. After the phone call with the Dept of Education, Jayden had speech therapy. He did fine until the therapist showed him a picture of a camera and he is obessessed with my p&s camera so he ran to grab it. We decided to let him take a few pictures with it and he would name everything he took pictures with. Then we needed him to move on b/c he started to get destructive with the camera. I tried to make a switch, the camera for his headphones which he usually LOVES, but he was not ready to transition. He threw the headphones, ran through the living flipping his chair and table over and swiping everything off of the coffee table, all while screaming like a banshee (and I know my neighbors heard this). Then he ran to his room. The BA once told us, when he knocks something down make him pick it up. That doesn't always work and today was an example. I literally had to DRAG him to the mess and tell him to pick it up. He screamed and flailed his body around, knocking down more stuff. So the speech therapist said, let's try hand over hand. So I took his hand in mine and made him "pick" up the mess. He balled his hands in fists and continued to kick and scream and hyperventilate, while I'm pretending that he's really picking up things and making me proud. Let's be honest here. I cannot deal with that 24/7. I need help with those behaviors. I don't know if the BA is skilled in working with that b/c she only focuses on learning and ignores the bad behaviors or distracts the kids with candy. Jayden is unpredictable. I'd literally have to have him eating candy all day to (hopefully) avoid a tantrum b/c once it happens, even candy will not pull him out of it.

Jayden's caseworker called me today to check on us since she'd heard about the complaint. When I told her the the BA said about my husband and I being the problem, the caseworker was just as pissed as I was. The thing is, I have a 10 page long evaluation of Jayden from the Dr, explaining all of the findings and a diagnosis, along with plans of action with one being behavior therapy. In my opinion, there is no reason for the BA to disagree with the diagnosis unless she can show me a 10 page report with opposite findings on my son. Otherwise, she has no case. The speech therapist actually cannot change her schedule, and I'm actually glad about that b/c the BA is trying to call all of the shots here. So I don't know what her plans are for next week, but Jayden has an appt on Wednesday in New Orleans for his seizures and I do not plan to rush n\back to Jackson for his therapy b/c chances are she will call at 3:15 and cancel again...why? Because he simply "doesn't need it".

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...

Mother Warrior

Jenny McCarthy says that a mother warrior is "a mother who, instead of mourning, breaks down walls, weaves her way through obstacles, and never gives up, even when she keeps hitting dead ends."

Today I am feeling like a mother warrior. Our insurance is not the only problem we are having with getting Jayden the services he needs. The main problem is our location. Why would it be so easy to use Tricare insurance in Louisiana, and get services paid for, yet it's useless in MS. This morning Jayden and I went to the National Guard base to apply for the ECHO program, a program that helps families in the military who have children with special needs. The cath is that it is only provided for active duty military. My husband is active duty, but that's not a common find out here in Jackson. Seriously when people see my husband in uniform and find out that he's active, you better believe that they will carry an hour long conversation about where he's been and how long he will stay in. And it's so funny b/c their eyes go straight to his medals, and he has several of them! But anyway, I wasn't surprised when I went to the desk to update DEERS and when I mentioned the ECHO program the guy had no idea what I was talking about. He walked me over to the medical office and the Colonel was able to help me. But since there are so few active duty families here in Jackson, there were only 3 cases in the system for families who have ever tried to apply for ECHO here, so he was lost as well. After lots of phone calls that got him nowhere, he turned to his computer and searched for information. From what he found he believes that the ECHO program won't pay for services here in Jackson b/c there are no providers here that meet their standards. I can understand that, as I surely wouldn't want to pay $2,500 a month to someone who is not doing the job I expect them to do. However, services are covered along the gulfcoast, including Biloxi and New Orleans. Hmmm, we are just in a bad place right now. So he gave me a number to call the case coordinator over the ECHO program and find out what she suggests. If I have to use my parents' address then I will. I left a message this morning and haven't rec'd a call back from her yet. Don't think that I'm simply going to wait on that phone call though. Not this warrior!!

I had to go down to the vital stats office to get a certified copy of Jayden's birth certificate in order to apply for the Medicaid for the child with disabilities. It is located in the Dept of Health building. Early Intervention is run by the Dept of Health so I knew they had to be in that building or nearby. So I'm sure you know what I did! I had the receptionist to call the office and give me permission to come up and they did. I went up and I told them the situation, that Jayden's Dr wants him back in therapy asap and since he is 2.5 yrs old, Early Intervention should be giving him the services he needs. She never once mentioned that they ran out of funds. And since everyone who hears this story cannot believe their ears, I'm starting to think that something is just not right with their BS story of no funds. If that was the case, the lady in that office would have said that. Instead, she emailed our coordinator and told her that the Dr needs him back in therapy asap. She gave me the coordinators number and told me that if I don't hear from her this week to call that number. Lack of funds...whatever.

Yesterday, a very kind lady gave me the contact number to MS PTI (MS Parent training and information center) to see if they could be of assistance. They were very polite and when I called, the woman on the phone already knew who I was and what problem we are having. She gave me contact information for the parent educator in my area and says that they should be able to help us out, so I will be calling her shortly to see where that leads me. I'm thankful that we have a plan to get out of here, and I admire all of the parents who have to raise special needs children here (although you may not be in my shoes since you don't have tricare insurance). However, we are stuck here during the most crucial period of his development, where intervention is needed and I will fight until he gets it. I will certainly leave my mark here in Jackson, MS!!

ABA, SLP, OT, IEP

So our lives have suddenly been filled with numerous abbreviations. Those letters are very important for Jayden's future at this point. Without them, he will probably continue to have a hard time with day to day situations and an even harder time when he starts school. ABA is applied behavioral therapy, where an SLP will work on his speech, and OT will work on his sensory issues, and a behavioral therapist will work on his behavioral problems and social anxiety. Without the proper use of speech, Jayden will not be able to effective communicate with his peers. If no one helps him with his sensory issues he will forever be subjected to a world where he thinks everything is repulsive, including rice, cold floors, food on his face, etc. He cannot tolerate it one bit. And the behavior. If it is not addressed, I hate to imagine what type teenager he will grow up to be. So knowing that you would think that the services would be covered under health insurance wouldn't you? We have documentation from Early Intervention, pediatrician, and the developmental pediatrician that he needs this, yet it's so hard to get. ABA therapy will cost us $640 a month for 20 hours a week of intensive therapy. Pretty soon we'll be adding a new abbreviation to our lives...NSF!!! LOL. Hopefully we will find another option without having to pay out of pocket. I know God is good all the time so it will work out.