As you know, from my last blog post, my niece and nephews are here for a week. All day long they pick with each other and argue back and forth. Last night, they went to the room to go to bed for the night. I heard the bickering and soon their little voices started to get louder and louder. So I went to the room and asked what was going on. My 9 yr old nephew yelled "SHE WON'T HELP US PRAY!!!"....
HAHAHA!! Oh yes, I have heard it all!
Wednesday, July 29, 2009
Tuesday, July 28, 2009
10 on Tuesday
1. I have officially lost my mind...I brought my niece and 2 nephews back home with me from New Orleans.
2. I forgot how much siblings bicker and pick with each other. And the potty mouth?!?! OMG.
3. They are currently playing Life, the boardgame (and I have decided I will just forget about the arguing and crying that took place in Target to decide which game to get) and this is the conversation:
"Hey why are you spinning again??"
"Because I landed on orange!!"
"No you didn't, you only spent 6 moves!!!!"
"No it was 9, you must be seeing things upside down!!"
"Where is my money from payday?!?!"
"You owed the bank for that big house you just bought!"
Fun stuff, I tell ya!
4. My husband called to check in on us b/c he thought I'd be stressed out, but I bet he was surprised to hear my laughing over the phone. It's seriously funny to hear how they get along...or not!
5. Jayden loves having them here, but they tend to egg him on and make him do things he is not supposed to do, like hit, and then they run to me to tell on him.
6. I still have 2 photo sessions I'm working on editing this week.
7. I also need to go back and edit the pictures from our trip to Destin way back in April!!
8. The house does not seem like it will sell by the time our conract is up in September, so we are considering leasing it.
9. We would be contracted through the real estate agency so that they can work with the tenants and maintain the property while we are in Louisiana. Not a bad deal and they would only charge 10% of the rent each month. It's not like we want to make money from leasing the house, we really just want to be sure the mortgage is paid each month, so we are considering it.
10. We leave on Friday for Orlando!! I am so excited for this trip!! I hope Jayden is able to enjoy himself this time around.
Oh and btw, I'm still waiting on a call from ANYONE to begin his therapy. Lots of promises, but no calls yet... This is ridiculous.
2. I forgot how much siblings bicker and pick with each other. And the potty mouth?!?! OMG.
3. They are currently playing Life, the boardgame (and I have decided I will just forget about the arguing and crying that took place in Target to decide which game to get) and this is the conversation:
"Hey why are you spinning again??"
"Because I landed on orange!!"
"No you didn't, you only spent 6 moves!!!!"
"No it was 9, you must be seeing things upside down!!"
"Where is my money from payday?!?!"
"You owed the bank for that big house you just bought!"
Fun stuff, I tell ya!
4. My husband called to check in on us b/c he thought I'd be stressed out, but I bet he was surprised to hear my laughing over the phone. It's seriously funny to hear how they get along...or not!
5. Jayden loves having them here, but they tend to egg him on and make him do things he is not supposed to do, like hit, and then they run to me to tell on him.
6. I still have 2 photo sessions I'm working on editing this week.
7. I also need to go back and edit the pictures from our trip to Destin way back in April!!
8. The house does not seem like it will sell by the time our conract is up in September, so we are considering leasing it.
9. We would be contracted through the real estate agency so that they can work with the tenants and maintain the property while we are in Louisiana. Not a bad deal and they would only charge 10% of the rent each month. It's not like we want to make money from leasing the house, we really just want to be sure the mortgage is paid each month, so we are considering it.
10. We leave on Friday for Orlando!! I am so excited for this trip!! I hope Jayden is able to enjoy himself this time around.
Oh and btw, I'm still waiting on a call from ANYONE to begin his therapy. Lots of promises, but no calls yet... This is ridiculous.
Friday, July 24, 2009
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...
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...
Tuesday, July 21, 2009
You find the therapist and we will pay them.
Sigh.
So I found out that DR. Kimberly Ray possibly shut her practice down b/c her husband (who also practiced with her) passed away earlier this year. I'm sorry for her loss. I wish TRicare would have been doing their jobs and checking up on the providers to be sure that there is someone in every area to offer these services to kids with autism b/c I know that Jayden is not the only autistic child in MS with Tricare insurance. So I called the case worker and she finally called me back today and said "We were not aware that Dr. Kimberly Ray is no longer in practice. What you can do is go to this website and see if you can find a BCBA (Board Certified Behavior Analyst) in the area who would be willing to add their name to our provider list. Otherwise, the closest provider on our list is Monroe, LA."
First of all, Monroe is an hour and a half drive from here. You can't expect a typical 2 yr old to ride for that long and then be expected to sit through extensive therapy. Second of all, it's YOUR job to find providers for the list. I just don't get it. It's amazing how the health care field just does not take developmental delays seriously. This will affect him in the future if he doesn't have the therapy he needs. It's already affecting our family life. I wish these people would begin to put themselves in our shoes. There is ONE lady out here in MS who has been helping me with this fight and she has a daughter with Downs Syndrome, so she knows better than I do how hard this can be. But of course, I won't let this road block stop me. I've already sent emails out to 3 BCBAs in the area. They are out here, they just don't want to deal with TRicare and I can't say that I blame them. My hope is that one of them will be willing to get on the provider list though. The ECHO program is only for active members in the military and there are not many here in teh Jackson area, so it's not like they will be bombarded with claims. I hope someone steps up.
We do have a back up plan though. Jayden's developmental pediatrician faxed over his evaluation and his diagnosis to Early Itervention. There is a Board Ceryified ASSISTANT Behavior Analyst who works through EI and she does behavioral therapy for any child that needs it, but autistic children are priority. She was full 2 weeks ago when I spoke to EI about the therapy but she was able to make room to get Jayden his therapy. He has an evaluation on Friday and hopefully therapy will start on the following week and it is covered through EI. I've learned not to get relieved so soon when I think things are finally working out b/c when they don't I get very upset, so we'll have to wait and see how everything goes on Friday...
So I found out that DR. Kimberly Ray possibly shut her practice down b/c her husband (who also practiced with her) passed away earlier this year. I'm sorry for her loss. I wish TRicare would have been doing their jobs and checking up on the providers to be sure that there is someone in every area to offer these services to kids with autism b/c I know that Jayden is not the only autistic child in MS with Tricare insurance. So I called the case worker and she finally called me back today and said "We were not aware that Dr. Kimberly Ray is no longer in practice. What you can do is go to this website and see if you can find a BCBA (Board Certified Behavior Analyst) in the area who would be willing to add their name to our provider list. Otherwise, the closest provider on our list is Monroe, LA."
First of all, Monroe is an hour and a half drive from here. You can't expect a typical 2 yr old to ride for that long and then be expected to sit through extensive therapy. Second of all, it's YOUR job to find providers for the list. I just don't get it. It's amazing how the health care field just does not take developmental delays seriously. This will affect him in the future if he doesn't have the therapy he needs. It's already affecting our family life. I wish these people would begin to put themselves in our shoes. There is ONE lady out here in MS who has been helping me with this fight and she has a daughter with Downs Syndrome, so she knows better than I do how hard this can be. But of course, I won't let this road block stop me. I've already sent emails out to 3 BCBAs in the area. They are out here, they just don't want to deal with TRicare and I can't say that I blame them. My hope is that one of them will be willing to get on the provider list though. The ECHO program is only for active members in the military and there are not many here in teh Jackson area, so it's not like they will be bombarded with claims. I hope someone steps up.
We do have a back up plan though. Jayden's developmental pediatrician faxed over his evaluation and his diagnosis to Early Itervention. There is a Board Ceryified ASSISTANT Behavior Analyst who works through EI and she does behavioral therapy for any child that needs it, but autistic children are priority. She was full 2 weeks ago when I spoke to EI about the therapy but she was able to make room to get Jayden his therapy. He has an evaluation on Friday and hopefully therapy will start on the following week and it is covered through EI. I've learned not to get relieved so soon when I think things are finally working out b/c when they don't I get very upset, so we'll have to wait and see how everything goes on Friday...
Monday, July 20, 2009
Silly of me...
So silly of me to think that the fight with the insurance company and the state of MS would be over so soon!! I called the number listed for the Dr that Tricare is contracted with for ABA therapy only to hear that the number is no longer in service. The business name, address, or phone number is not in the yellow pages. Their website is incredibly outdated. I am willing to bet that they jumped ship. They no longer exist here in Jackson. And Tricare should be ashamed for not keeping their records up to date. So I've left two messages for the case worker today and she hasn't called back. I also sent an email to the email address found on the outdated website just in case, by some chance, they actually do exist and failed to update their site (and get their new info into the yellow pages). So, the fight starts again...such a short break!!
For the record, the business is called TCLC (The Childhood Learning Center) Mississippi Behavior Clinic and it is SUPPOSED to be located at 357 Towne Center Blvd in Ridgeland. Their website is www.tclc.com. If you know anything about this company, please let me know! Thanks :)
ETA: Scratch the email idea. I just went to my inbox and the email I sent to them was undeliverable. This is beginning to get ridiculous!
For the record, the business is called TCLC (The Childhood Learning Center) Mississippi Behavior Clinic and it is SUPPOSED to be located at 357 Towne Center Blvd in Ridgeland. Their website is www.tclc.com. If you know anything about this company, please let me know! Thanks :)
ETA: Scratch the email idea. I just went to my inbox and the email I sent to them was undeliverable. This is beginning to get ridiculous!
Sunday, July 19, 2009
Doing a happy dance
Woooo, I have had such a WONDERFUL week!!! Sure we've had a few incidents, like Jayden waking up from his nap and opening his bedroom door, then opening the front door...and walking outside into the street!!! I just so happened to be in the guest bedroom and saw a little boy out of the corner of my eye. Thank goodness for being in the right place at the right time huh? We now have doorknob covers in place. My husband and I have both been locked out of the house this week by the same little boy! Thank goodness we both were home at both times to let each other back in! LOL! Oh and the said little boy has also picked up a bad word and uses it appropriately. But hey, it's all typical of a 2 yr old little boy. Certainly things we can laugh at, but we try hard not to laugh in his presence!! Now on to the good (GREAT!!!) stuff!
First of all, I cannot stress how happy my husband and I are that we can finally have dinner as a family. I actually look forward to dinner now. In the past (very recent past!), I admit to going to bed without dinner b/c I would lose my appetite over the screaming and crying coming from a child who simply did not want to see any other food on his tray other than french fries. It was a very stressful situation. Like I said in my last post, he is really accepting his gluten free foods now. He loves his bread and I love to sit there and watch him eat it with a smile on his face! It makes me so happy to see him enjoying bread again b/c I know he loves it. He now comes running when he smells something cooking in the kitchen. He runs straight to his booster seat and yells "HELP ME!!" because he wants to sit down and get ready for his serving. This is an entirely different child people!! The other night I was getting ready to put some cinnamon rolls in the oven for my husband and I. We always have to have our snacks at night after Jayden is in bed. So I thought he was in bed, but he came running to give me a kiss goodnight and just as he ran in I was busy being baffled by the fact that there were eight cinnamon rolls in the can, when usually there are just 5. So he ran in and I said "Eight?!?!" Jayden saw the picture of the rolls on the can and immediately said "Mmmmmm, EIGHT!!!" and ran to his booster!! LOL!! I put the "eights" back in the fridge and told him we would eat them tomorrow. Well, all week he's been asking for eight, so I'm on the hunt for some GF cinnamon rolls for him. HEHEHE!! He's too cute.
Yesterday, we drove out to Birmingham to spend the day with my best friend and her husband and their 6 month old son. I also planned to take pictures for them at theBotanical Gardens. We did not expect Jayden to be on his best behavior and we were prepared for the worst. However, my best friend is an occupational therapist and is used to dealing with kids with special needs and behavioral problems. We got to Birmingham and met up with my friend and we headed to Red Robin for lunch. I sat on the end of the booth, prepared to walk Jayden around the restaurant and to the game room area once he started to act up. Well, I never had to leave the booth. I actually got bored waiting for him to act up! He took pictures with my camera (cute pictures too!) and everytime he happened to get a person in the picture he'd yell "I got you!!" very loudly. But it wasn't disruptive at all, so we let him have his fun. Besides, we were in Red Robin and they love kids. Jayden had the grilled chicken on a stick and when his food came he ate quietly. He chewed on the chicken and then would spit it out. I think it was too tough, but the fact that he tried eating it was enough for us. He devoured his fries of course and impressed my BFF by showing her all of his signs he uses during dinner time, and how politely he uses them...he makes sure he wipes his hands off on his shirt before he signs! It's not polite to sign with dirty hands you know! lol. We were even able to sit for about 20 minutes after finishing our meals and just chat...UNHEARD OF!! He didn't have one.single.fit. I was one proud momma. So then we headed to the Botanical Gardens for pictures. My husband had Jayden and they stayed off to one side playing while I took pictures. We worried that Jayden would just hop in front of the camera and cry for me if he saw me doing anything without him. Well he showed us...he actually assisted me! I am often found lying on the ground when I take pictures of babies. Well Jayden saw me on the ground, squealing and calling the baby's name to get him to smile and Jayden felt that he could help me. He ran up beside me dancing for the baby, sat on my back and called the baby's name, and even said "CHEESE!!" LOL!! He was the PERFECT assistant. You should see the eye contact I got from the baby once my little helper joined me!
After the pictures (which were a huge success) we headed to TCBY. Jayden had an orange sorbet with sprinkles and he was in heaven. By now he was getting tired though so he exhibited some of his selective hearing traits...hehehe! But never did we have to put him in a time out or tape him to a seat ;) Once, when the baby got fussy, Jayden ran over and started teaching him sugn language. Oh boy was that cute. He really wanted the baby to sign "dance" and to dance at the same time. That takes a bit of practice though.
When we hit the road to head home last night, I had a renewed sense of peace...and patience. This wonderful week with Jayden was just what I need to refill my cup of patience. This may sound mean to you if you haven't had to experience what I experience 24 hours and 7 days a week of bad behaviors, but now when he looks up at me with those sweet eyes, I can remind him of what a good boy he has been lately and how proud I am of him, as opposed to smiling at him but crying on the inside b/c of what a bad boy he had been. My husband and I have been talking about how well he's been behaving all day today. I love it!! The Dr was telling us that we would never be sure how much of Jayden's autistic behaviors have to do with the untreated celiac disease, but if this is not some type of phase, I would think it's safe to say that it had alot to do with a bad stomach. Don't get me wrong, he still has his issues, mainly the social anxiety and although he is talking more, he still has a significant speech delay, but that's where the other good news comes in...
We received a letter in the mail Friday stating that our insurance approved us for the ECHO program, which will pay for Jayden to receive ABA therapy here in MS! We were worried about that b/c they will only cover us until my husband retires in Jan and we were having a hard time getting the last of the papaerwork filled out to get the ball rolling on the insurance coverage. In the letter they state that Jayden's insurance is officially active and we have 90 days to complete the paperwork (which I know we will have completed by then), but for now he can start therapy asap! This makes me so happy. I know he will be okay b/c I'm already seeing positive strides from him with just the strict diet change. We are finally making our way out from behind these dark rain clouds and starting to see some sunshine :)
First of all, I cannot stress how happy my husband and I are that we can finally have dinner as a family. I actually look forward to dinner now. In the past (very recent past!), I admit to going to bed without dinner b/c I would lose my appetite over the screaming and crying coming from a child who simply did not want to see any other food on his tray other than french fries. It was a very stressful situation. Like I said in my last post, he is really accepting his gluten free foods now. He loves his bread and I love to sit there and watch him eat it with a smile on his face! It makes me so happy to see him enjoying bread again b/c I know he loves it. He now comes running when he smells something cooking in the kitchen. He runs straight to his booster seat and yells "HELP ME!!" because he wants to sit down and get ready for his serving. This is an entirely different child people!! The other night I was getting ready to put some cinnamon rolls in the oven for my husband and I. We always have to have our snacks at night after Jayden is in bed. So I thought he was in bed, but he came running to give me a kiss goodnight and just as he ran in I was busy being baffled by the fact that there were eight cinnamon rolls in the can, when usually there are just 5. So he ran in and I said "Eight?!?!" Jayden saw the picture of the rolls on the can and immediately said "Mmmmmm, EIGHT!!!" and ran to his booster!! LOL!! I put the "eights" back in the fridge and told him we would eat them tomorrow. Well, all week he's been asking for eight, so I'm on the hunt for some GF cinnamon rolls for him. HEHEHE!! He's too cute.
Yesterday, we drove out to Birmingham to spend the day with my best friend and her husband and their 6 month old son. I also planned to take pictures for them at theBotanical Gardens. We did not expect Jayden to be on his best behavior and we were prepared for the worst. However, my best friend is an occupational therapist and is used to dealing with kids with special needs and behavioral problems. We got to Birmingham and met up with my friend and we headed to Red Robin for lunch. I sat on the end of the booth, prepared to walk Jayden around the restaurant and to the game room area once he started to act up. Well, I never had to leave the booth. I actually got bored waiting for him to act up! He took pictures with my camera (cute pictures too!) and everytime he happened to get a person in the picture he'd yell "I got you!!" very loudly. But it wasn't disruptive at all, so we let him have his fun. Besides, we were in Red Robin and they love kids. Jayden had the grilled chicken on a stick and when his food came he ate quietly. He chewed on the chicken and then would spit it out. I think it was too tough, but the fact that he tried eating it was enough for us. He devoured his fries of course and impressed my BFF by showing her all of his signs he uses during dinner time, and how politely he uses them...he makes sure he wipes his hands off on his shirt before he signs! It's not polite to sign with dirty hands you know! lol. We were even able to sit for about 20 minutes after finishing our meals and just chat...UNHEARD OF!! He didn't have one.single.fit. I was one proud momma. So then we headed to the Botanical Gardens for pictures. My husband had Jayden and they stayed off to one side playing while I took pictures. We worried that Jayden would just hop in front of the camera and cry for me if he saw me doing anything without him. Well he showed us...he actually assisted me! I am often found lying on the ground when I take pictures of babies. Well Jayden saw me on the ground, squealing and calling the baby's name to get him to smile and Jayden felt that he could help me. He ran up beside me dancing for the baby, sat on my back and called the baby's name, and even said "CHEESE!!" LOL!! He was the PERFECT assistant. You should see the eye contact I got from the baby once my little helper joined me!
After the pictures (which were a huge success) we headed to TCBY. Jayden had an orange sorbet with sprinkles and he was in heaven. By now he was getting tired though so he exhibited some of his selective hearing traits...hehehe! But never did we have to put him in a time out or tape him to a seat ;) Once, when the baby got fussy, Jayden ran over and started teaching him sugn language. Oh boy was that cute. He really wanted the baby to sign "dance" and to dance at the same time. That takes a bit of practice though.
When we hit the road to head home last night, I had a renewed sense of peace...and patience. This wonderful week with Jayden was just what I need to refill my cup of patience. This may sound mean to you if you haven't had to experience what I experience 24 hours and 7 days a week of bad behaviors, but now when he looks up at me with those sweet eyes, I can remind him of what a good boy he has been lately and how proud I am of him, as opposed to smiling at him but crying on the inside b/c of what a bad boy he had been. My husband and I have been talking about how well he's been behaving all day today. I love it!! The Dr was telling us that we would never be sure how much of Jayden's autistic behaviors have to do with the untreated celiac disease, but if this is not some type of phase, I would think it's safe to say that it had alot to do with a bad stomach. Don't get me wrong, he still has his issues, mainly the social anxiety and although he is talking more, he still has a significant speech delay, but that's where the other good news comes in...
We received a letter in the mail Friday stating that our insurance approved us for the ECHO program, which will pay for Jayden to receive ABA therapy here in MS! We were worried about that b/c they will only cover us until my husband retires in Jan and we were having a hard time getting the last of the papaerwork filled out to get the ball rolling on the insurance coverage. In the letter they state that Jayden's insurance is officially active and we have 90 days to complete the paperwork (which I know we will have completed by then), but for now he can start therapy asap! This makes me so happy. I know he will be okay b/c I'm already seeing positive strides from him with just the strict diet change. We are finally making our way out from behind these dark rain clouds and starting to see some sunshine :)
Wednesday, July 8, 2009
Eating
For the past few weeks we've noticed that Jayden has been eating more. Usually he is a VERY picky eater. Just last month his diet consisted of only hot dog weiners and fries. If I placed anything else in front of him he had a HUGE fit. This had been going on for over a year and Drs kept saying it was a phase and to keep offering him new items on his plate and eventually he will eat it. Well it was far too stressful for him and far too wasteful for me, so I served him what I knew he wanted. I had a feeling that he would let us know when he's ready to try new things. Ironically, he's decided to try new things once his prevacid dosage was increased and his new GI diagnosed him with celiac and we knew then that we had to keep ALL traces of gluten out of his tummy. Maybe now his stomach is finally getting the chance to heal after 2 yrs of pain. Recently he's started showing interest in what we were eating on our plate. It's like he was starting from the beginning, you know when your infant starts to show interest in the food on your plate and you know they are ready for solids. My poor baby was afraid of food for so long and finally he was ready to give it a try. He would examine our plate and then say "Open" and hold his mouth open like a baby bird. I would offer him a bite and either he would eat it and ask for more, or he'd put it in his mouth, examine it with his tongue and then spit it out. But we still celebrated for him for at least allowing it in his mouth, which is a huge step for Jayden. 5 weeks ago when we got the diagnosis, I started to pay more attention to the meals I cook at home and the foods I buy to keep in the house, just in case he decided to start eating what we eat. Going on a gluten free diet is really not as hard as people think. Of course you will greatly miss regular bread and baked foods using regular flour b/c let's face it, gluten free flour just does not compare! A gluten free diet also eliminates fried foods (unless you use a GF alternative) and any and everything containing wheat. However, meats are okay as long as they aren't injected with broth. Rice, potatoes, beans, fresh veggies and fruit can also be eaten. So when you think about it, there are several option available on the GF diet, as long as they are prepared safely. But it's hard to go on the diet if you are a picky eater like Jayden is. But I continued to read labels and use GF ingredients when I cook just in case. Well I have big news...Jayden has been eating the same things we eat for dinner for almost 2 weeks now!! Of course there are nights when he would rather not eat, but I can sit a plate in front of him and he will not scream! Praise God. He is making some positive strides. On the 4th we had a family BBQ and usually I worry about him going to cookouts b/c usually there is nothing he can (or will) eat. So I packed him some GF snacks and GF beans. I didn't have to open his beans though b/c Jayden ate 3 hot dogs (they were GF, expensive but taste great!), a piece of chicken, and some of my rib. I was so proud of him! Also, after his appt on MOnday, we went out to eat at Outback with my parents. If you have anyone in your family with Celiac Disease, Outback has an AWESOME gluten free menu. We ordered Jayden the grilled chicken on the barbie with sweet potatoe fries and he ate it all!
I am so thankful for this. Now that he is eating better, it will make it so much easier to prepare meals for him and hopefully by the time he has to start preschool in January, they will be offering a gluten free option so that he won't feel set apart from his classmates.
I am so thankful for this. Now that he is eating better, it will make it so much easier to prepare meals for him and hopefully by the time he has to start preschool in January, they will be offering a gluten free option so that he won't feel set apart from his classmates.
Tuesday, July 7, 2009
PDD-NOS
So as you all may know, Jayden's social evaluation took place on yesterday morning. He actually had two appts scheduled, the first was for genetic testing. That appt was RIDICULOUS! When the Dr walked in, Jayden was already in a really foul mood. He jumped on my lap and started screaming when the Dr tried talking to me, so I had to yell over Jayden's screaming. Then when I asked him to be quiet for me he had one of his fits. He was squirming on my lap and just very irritable. Then he started throwing toys around the room. The Dr then starts asking developmental questions. He knew that we were referred to him b/c the Developmental pediatrician suspected autism. So he asks, "How is his eye contact." I tell him, "Usually it's okay, but he won't make eye contact much in social situations." He looks Jayden in the eyes and then says "He's looking at me. His eye contact is just fine." Then he asks, "Does he have any repetitive behaviors like rocking or spinning." I had a hard time not walking out of the room at this point b/c right when he asked this question, Jayden was hanging off of my lap with his head and arms hanging towards the floor, rocking up and down and whining. I just looked at the Dr like he was crazy. WTH?!?! So then he says, "I really don't believe that he has autism. His behaviors seem typical of a 2 yr old boy." He seriously said this within the first 10 minutes of the appt. He had never met Jayden before. He went on about how boys are slower to develop than girls in all areas of development. I was very quiet for most of this ridiculous appt b/c I was afraid of what would come out of my mouth. So my husband did most of the talking. He told the Dr about how Jayden screams and does not do well in a room with children his age or younger. The Dr said "Well at his age, he shouldn't be expected to play with other kids. A this age they parallel play." I had to pipe in. I said "We are aware of that, but in Jayden's case, it is DANGEROUS to bring him in a room with smaller kids b/c he literally attacks them." So then he asks if we have considered childcare. At that point, I checked out of the appt b/c his goal was to make us feel like we were just being paranoid, over bearing parents. That point was proven when he asked us if we had friends with small kids. When we said yes he told us "Ask them if they think that the way Jayden acts is out of the ordinary." OMG. He went on to read articles from the internet about Jayden's celiac disease diagnosis, to recommend sedatives when we take him in public, and to recommend that we work on our patience. WOW. He decided that genetic testing was not necessary b/c Jayden appears fine. So that appt was worthless.
So we had an hour to kill before the social eval so we went to grab some lunch and came back to check in for his evaluation. He had a huge tantrum in the waiting room which included him getting angry and throwing his snack bar on the floor so I had to throw the snack bar away b/c I won't let him eat off of a hospital floor. Well the fit was huge. He calmed down and a few minutes later we were called back to our room. We waited for about 10 minutes and the Dr came in with an assistant and didn't waste any time. She immediately instructed Jayden to sit down and at first he ignored her but as soon as she opened her cart full of tricks, he sat down like a big boy. The evaluation was full of surprises, both good and bad. First she pulled out a shapes puzzle with squares and circles. Jayden put the puzzle together in less than a minute. He knew exactly where each piece went immediately. We were so impressed. Next she pulled out a page with a picture of different color crayons, then she handed him some colored shapes and told him to match the colors. I can't remember, but I do believe she showed him one example of how to do it. Then he matched each color with no problem, but struggled a bit with green and actually said "Oh no" when he realized that he was stuck. He finally got it though, and with no tantrum involved. Next she switched to ducks of different sizes and colors. She tried to get him in groups of colors, then groups of sizes. He only wanted to line them up, and at one point he put them all in "time out" facing a book! LOL! The dr was switching the activities so quickly and I was pleasantly surprised that he transitioned so well. But the Dr said that it may have had to do with how quickly she made the changes and that he immediately had something new and interesting in front of him before he could get upset. So things starts to get difficult for him soon. She showed him a page with a main picture, like a tricycle, and then three other pictures below it and asked him to find the other tricycle. He just ignored her. She tried three other times but he just ignored her. She called his name several times and he never replied. The same thing happened when she showed him a picture book and asked him to show her where the dog was. He ignored her. She even paused to look at his chart to be sure she was pronouncing his name correctly b/c he was not responding. But then when she showed him the same book and she pointed to the dog and said "Jayden what is this?" He immediately said "dog". And she continued pointing to the pictures and he would immediately identify them. So we realized yesterday that he does not point which is not good :( We didn't know that he didn't point. We never noticed. So that first part was to test his cognitive development and he did have some obvious delays there. Next we moved to a bigger room filled with toys, and this part would test his social play skills. He was so happy in there with all of the toys and it was so funny to see him switch from one toy to the next within just a few minutes. The Dr said it was good that he wasn't obsessed with any particular toy but that he could benefit from playing with one toy at a time for a bit longer than he does. Next came the moment that the Dr said really mattered, social play. She pulled out toys that required him to play with others. First she used a bubble blower. He was interested in the bubble blower, but he wanted to do them himself. When he saw that she would be the one blowing them and that we all were excited to see the bubbles, he immediately lost interest. He also refused to make eye contact with her. Next she did this thing with a balloon where she would blow air in a balloon and make him say "1,2,3, GO!" and let it go. He loved it, but she said that he still wouldn't make eye contact with her when waiting for the ballon to go. Instead he stared at the balloon instead of looking at her for her facial expression to prepare to release the balloon. Also, when he gave her the ballon back and waited for more he wouldn't look at her. WOW. So what about the perfect eye contact that the first Dr told us he had just this morning? I felt bad b/c I knew that the first Dr gave my husband false hope. I already knew that his eye contact was bad in public, but mainly when he is having a fit. I didn't realize that he refused to make eye contact while interacting with people. Next she tried to get him to feed a baby doll and a teddy bear. He refused to look at the doll or the bear. Then they gave the doll a birthday party complete with birthday cake. He put cake on the doll's plate but wouldn't help her to eat it. Finally the Dr came and sat with us while Jayden continued to play with the toys. As she explained to us her findings, Jayden pulled out the toys that he would have had to play with along with the Dr. His eye contact returned. He even grabbed the balloon and brought it to the Dr and looked her right in the eye and said "more". She told us that it seems like he is extremely nervous when he isn't in control and that may explain his lack of eye contact. It has so much to do with his social anxiety. So he scored very low in language and communication. The lowest score possible. He also scored low in cognitive development and social skills. The Dr was hesistant to score the evaluation mainly b/c she could see that most of Jayden's issues arise in social situations (with the exception of his speech delay), but that the scoresheet does not allow for "extra credit" points. From what she witnessed during the evaluation, the social score would place him on the autism spectrum, but then what she saw after the evaluation, would not. So she said what I had been thinking all along "Jayden is a very complexed case!" She expressed, that we will never know how much of this was caused by the untreated celiac disease but she believes that if we can help him with his extreme social anxiety, he will get better with the social aspect of things. So in her professional opinion, he does not appear to be on the autism spectrum, yet he does display some of the classic autism symptoms. So she diagnosed him with PDD-NOS, Pervasive Developmental Disorder. Again, she stressed that he needs to be in therapy b/c he can beat this. She suggests speech therapy, occupational therapy, behavioral therapy, ABA therapy, and a child psychologist to help with the social anxiety. All of which I will be fighting for. The government is cutting back on so much lately b/c of the recession. Early Intervention told me that they would be picking Jayden back up this month but that he will probably only be seen 2 times a month. That's not fair. It's just not enough for him. We need to help get him prepared for preschool b/c once he turns three the school system has to take over his therapy. How will he handle preschool if he has not had help with his social anxiety? Those that are making these decisions to cut back on the services that special needs children need to have a better life, obviously have not had their lives touched by a child with special needs. It's senseless. On a positive note though, b/c we finally have a diagnosis, we can finally get the ball rolling on his disability insurance which should help cover the cost of some of the therapy services that he needs.
Last night my cousin told me that Jayden is so lucky to have us as his parents. I know she means well, but I disagree. I think that WE are the lucky ones. Jayden has taught us to fight, to have patience, and to have faith no matter how rough life gets. At only 2.5 yrs old, he has taught us some very valuable life lessons am I will be forever grateful.
So we had an hour to kill before the social eval so we went to grab some lunch and came back to check in for his evaluation. He had a huge tantrum in the waiting room which included him getting angry and throwing his snack bar on the floor so I had to throw the snack bar away b/c I won't let him eat off of a hospital floor. Well the fit was huge. He calmed down and a few minutes later we were called back to our room. We waited for about 10 minutes and the Dr came in with an assistant and didn't waste any time. She immediately instructed Jayden to sit down and at first he ignored her but as soon as she opened her cart full of tricks, he sat down like a big boy. The evaluation was full of surprises, both good and bad. First she pulled out a shapes puzzle with squares and circles. Jayden put the puzzle together in less than a minute. He knew exactly where each piece went immediately. We were so impressed. Next she pulled out a page with a picture of different color crayons, then she handed him some colored shapes and told him to match the colors. I can't remember, but I do believe she showed him one example of how to do it. Then he matched each color with no problem, but struggled a bit with green and actually said "Oh no" when he realized that he was stuck. He finally got it though, and with no tantrum involved. Next she switched to ducks of different sizes and colors. She tried to get him in groups of colors, then groups of sizes. He only wanted to line them up, and at one point he put them all in "time out" facing a book! LOL! The dr was switching the activities so quickly and I was pleasantly surprised that he transitioned so well. But the Dr said that it may have had to do with how quickly she made the changes and that he immediately had something new and interesting in front of him before he could get upset. So things starts to get difficult for him soon. She showed him a page with a main picture, like a tricycle, and then three other pictures below it and asked him to find the other tricycle. He just ignored her. She tried three other times but he just ignored her. She called his name several times and he never replied. The same thing happened when she showed him a picture book and asked him to show her where the dog was. He ignored her. She even paused to look at his chart to be sure she was pronouncing his name correctly b/c he was not responding. But then when she showed him the same book and she pointed to the dog and said "Jayden what is this?" He immediately said "dog". And she continued pointing to the pictures and he would immediately identify them. So we realized yesterday that he does not point which is not good :( We didn't know that he didn't point. We never noticed. So that first part was to test his cognitive development and he did have some obvious delays there. Next we moved to a bigger room filled with toys, and this part would test his social play skills. He was so happy in there with all of the toys and it was so funny to see him switch from one toy to the next within just a few minutes. The Dr said it was good that he wasn't obsessed with any particular toy but that he could benefit from playing with one toy at a time for a bit longer than he does. Next came the moment that the Dr said really mattered, social play. She pulled out toys that required him to play with others. First she used a bubble blower. He was interested in the bubble blower, but he wanted to do them himself. When he saw that she would be the one blowing them and that we all were excited to see the bubbles, he immediately lost interest. He also refused to make eye contact with her. Next she did this thing with a balloon where she would blow air in a balloon and make him say "1,2,3, GO!" and let it go. He loved it, but she said that he still wouldn't make eye contact with her when waiting for the ballon to go. Instead he stared at the balloon instead of looking at her for her facial expression to prepare to release the balloon. Also, when he gave her the ballon back and waited for more he wouldn't look at her. WOW. So what about the perfect eye contact that the first Dr told us he had just this morning? I felt bad b/c I knew that the first Dr gave my husband false hope. I already knew that his eye contact was bad in public, but mainly when he is having a fit. I didn't realize that he refused to make eye contact while interacting with people. Next she tried to get him to feed a baby doll and a teddy bear. He refused to look at the doll or the bear. Then they gave the doll a birthday party complete with birthday cake. He put cake on the doll's plate but wouldn't help her to eat it. Finally the Dr came and sat with us while Jayden continued to play with the toys. As she explained to us her findings, Jayden pulled out the toys that he would have had to play with along with the Dr. His eye contact returned. He even grabbed the balloon and brought it to the Dr and looked her right in the eye and said "more". She told us that it seems like he is extremely nervous when he isn't in control and that may explain his lack of eye contact. It has so much to do with his social anxiety. So he scored very low in language and communication. The lowest score possible. He also scored low in cognitive development and social skills. The Dr was hesistant to score the evaluation mainly b/c she could see that most of Jayden's issues arise in social situations (with the exception of his speech delay), but that the scoresheet does not allow for "extra credit" points. From what she witnessed during the evaluation, the social score would place him on the autism spectrum, but then what she saw after the evaluation, would not. So she said what I had been thinking all along "Jayden is a very complexed case!" She expressed, that we will never know how much of this was caused by the untreated celiac disease but she believes that if we can help him with his extreme social anxiety, he will get better with the social aspect of things. So in her professional opinion, he does not appear to be on the autism spectrum, yet he does display some of the classic autism symptoms. So she diagnosed him with PDD-NOS, Pervasive Developmental Disorder. Again, she stressed that he needs to be in therapy b/c he can beat this. She suggests speech therapy, occupational therapy, behavioral therapy, ABA therapy, and a child psychologist to help with the social anxiety. All of which I will be fighting for. The government is cutting back on so much lately b/c of the recession. Early Intervention told me that they would be picking Jayden back up this month but that he will probably only be seen 2 times a month. That's not fair. It's just not enough for him. We need to help get him prepared for preschool b/c once he turns three the school system has to take over his therapy. How will he handle preschool if he has not had help with his social anxiety? Those that are making these decisions to cut back on the services that special needs children need to have a better life, obviously have not had their lives touched by a child with special needs. It's senseless. On a positive note though, b/c we finally have a diagnosis, we can finally get the ball rolling on his disability insurance which should help cover the cost of some of the therapy services that he needs.
Last night my cousin told me that Jayden is so lucky to have us as his parents. I know she means well, but I disagree. I think that WE are the lucky ones. Jayden has taught us to fight, to have patience, and to have faith no matter how rough life gets. At only 2.5 yrs old, he has taught us some very valuable life lessons am I will be forever grateful.
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