How was YOUR Thanksgiving? Let me tell you all about ours!
Our day started off really slow. We actually hung around the house in PJs for the first half of the day. We toyed around with the idea of going to get our tree (out of sheer boredom!), but decided that we'd rather stick to our tradition of picking out our tree on the day after Thanksgiving. Jayden went down for a nap, my husband ran to 7 (or was it 13?!) gas stations to find me a Thanksgiving newspaper, and I knitted. Bored. I thought about gumbo and wished I had some. Instead, I made me a turkey sandwich and announced that at least I enjoyed some turkey on Turkey day. Jayden woke up from his nap in a great mood and my husband said "I wonder if Bass Pro Shop is open today?" Actually, they were and Santa was there! So we got dressed and headed over to Bass Pro. Jayden remembered the building from last year and as soon as we pulled up he yelled, "HO HO HO!!" He knew he was going to see Santa. We got inside and Jayden was saying, "Santa, where are you??" We got to the back and Jayden ran straight to Santa's lap. He took some pictures and then went to write a letter to Santa and we snapped some pictures of him mailing his letter. I should really get back to sharing pictures on this blog. Really, I should! After he mailed his letter, he ran back to Santa again. He just couldn't get enough of the big guy (and the candy canes!). Next he played on some boats and sat on some quads. Then we decided to go out for our non traditional Thanksgiving dinner at LoneStar Steakhouse. This is where someone decided that our day was simply too boring and we needed some excitement...
Lonestar was dead! What? No one eats steak for Thanksgiving?? LOL! It was fine for us though b/c we knew Jayden would do better in a less crowded environment. We got our seat and Jayden unrolled his silverware and started playing with the utensils, as usual. He was also climbing under the table going to sit with my husband and then coming back to sit with me. Nothing unusual for him. We colored on his coloring page, I traced his hand, and I gave him his drink. He was totally fine. Then my cell phone rang. It was my sister in law calling to check in on us since we weren't able to make it to the family dinner in New Orleans. I could hear all of the chaos in the background and I said, "Oh yeah, it sounds hectic over there!" As we were talking, Jayden was still playing under the table (at least I thought he was) and then he started screaming. But Jayden is a screamer, so I didn't even think anything was wrong. I told my siter in law, "Girl, let me tame my child, I'll call you back!" I hung up the phone and Jayden was closer to my seat so I was trying to pull him up and my husband was trying as well. Jayden was facing me and screaming, but I wasn't really looking into his face b/c, again, I didn't think anything was wrong, just that he was being naughty. I noticed that he was extremely hard to pull up, as if he was stuck. Then he started screaming and crying "Mommeeee, mommeee, mommeeeee!!!" I heard fear in his voice and it was a sad cry, not his angry cry. I looked down in his face and it was like he was begging for help. His fists were clenched and I had to PRY the fork out of his hand. I kept trying to pull him up and reached down to see if his leg was stuck or something b/c something was hurting him. Then I noticed his legs were crossed and he wouldn't uncross them. It still didn't cross my mind that he could be having a seizure though. I could NOT get him from under the table, so my husband was able to grab Jayden's shirt and pull him from under. Jayden got into the booth by my husband and his expression was just distant. He stared up at the ceiling trembling, clenching the table and whining saying "Scared scared" and at one point he said "Spiderman", but the look on his face was like he had checked out. I looked at my husband and I said "Now I think that was a seizure." Only, we didn't know what to expect next. He leaned against my husband and wanted to be held close. He screamed if he wasn't snuggled up against his daddy. Mike took him outside and I was calling my mom to see if a trip to the ER was necessary. My mom didn't answer. The waiter deliever our food just as Mike came back and gave Jayden to me. He was still whining and the only word him would say is "scared" and his voice was getting weaker and weaker. Then he got very cold and clammy and just went kind of limp. Mike ran to get our waiter, got our check, and left...no dinner for us! As we got outside, Jayden wasn't responding to me anymore, just a very weak cry. I contemplated calling an ambulance at that moment, but I knew I wouldn't be able to wait around for one so we jumped in the truck and I sat in the backseat and held Jayden while Mike drove to the ER. He had on his hazard lights, but the traffic wasn't bad at all and we got to the ER pretty quick. I went to checxk him in and the girl at check in was basically ignoring me at the window so I said "My son is having seizures and is non responsive. Then she noticed the limp, moaning child in my arms and got us checked in and called back immediately. In triage, they made me stand him up and he was just moaning, not responding to anything, not even candy or spiderman stickers. And when I stood him up he fell. My baby couldn't even walk :( I was SO scared. All of his vitals were stable though. We went to a room and 3 ER doctors checked him out. We were telling them that we "think" he had a seizure, but we just weren't sure. The Drs all agreed that Jayden was showing the classic symptoms of a generalized seizure that affected his entire brain, which is why he couldn't walk or talk and why he was probably hallucinating when he said spiderman when we were in the restaurant. The main concern was how long the seizure lasted. We believe it lasted for 30-45 seconds, but we are certain it didn't last for 5 minutes, which is when they say it gets dangerous for him. So now the hard part was him recovering from it and his brain activity returning to normal. After about an hour in the ER, he was talking again. He even asked the Dr for some juice. He still couldn't walk though and that was very scary. We had to stay until he was pretty stable on his feet. Once he was able to walk without falling backwards, they let us go. They gave us a prescription for a medication called Diastat, which is basically a seizure medication given rectally to stop a seizure that has gone on for 5 minutes or more. We have to carry it with us where ever we go. The ER dr also told us that it is VERY important for him to have a followup with his neurologist since this is basically the first time he's had a seizure like this (that we know of) since being on his antiseizure medication. His neurologist needs to know this b/c he may have to change Jayden's medication or the dosage, and he needs to get the results from Jayden's MRI back stat b/c his condition has changed since starting his antiseizure meds. So the clinic is closed today, but I will be calling on Monday morning. His MRI is scheduled for Wednesday, so I'm hoping that the Dr can squeeze us in on wednesday after the MRI and hopefully have some answers for us.
Jayden bounced back by 10 o clock last night. He did throw up twice, which is what I was waiting for b/c whenever I've witnessed someone have a seizure, they usually threw up afterwards. After he threw up, he was jumping in bed, requesting movies, and being bossy! LOL. Jayden was back. This morning he was OFF.THE.CHAIN. But let me tell you how thankful I was to have my hyperactive, mischievous, son back. Last night, when he was limp, quiet, non responsive, and not able to walk, I just imagined what life would be like if my baby didn't gain his skills back. Things like this happen to parents so often when children have brain injuries, and I just had that fear. I thank God that we didn't have to endure such heartache and I pray for the parents that are going through that hell.
Friday, November 27, 2009
Wednesday, November 25, 2009
Laid back
We decided that this year we will not be driving to New Orleans to spend Thanksgiving with family this year. This is the VERY first year that I will not be seeing my parents and the rest of my family on a day when the people I'm most thankful for is them. It's tough, but it really wasn't a hard decision for me to make. The decision was based off two main factors: money and Jayden. It costs us $80 round trip to make the drive (which actually isn't that bad), but we'd have to make the drive all over again next week for Jayden's MRI and EEG at Tulane. Considering it's almost Christmas and Jayden's birthday and his party is right around the corner, it's just not in the budget to travel to New Orleans twice in one week. Also, my family is HUGE! HUGE! HUGE! Seriously huge. And we like to all have Thanksgiving dinner together. So imagine a family of 50+ people (and I'm not counting my great great uncles and 4th cousin removed. These are aunts, uncles and 1st cousins and their kids) all seating at tables that are lined up like cafeteria tables very close together. All talking at the same time. Laughing. Utensils hitting fine china. Babies crying. Kids screaming. All sensory overload for Jayden. Last year was horrible for him and we were just beginning to notice that something just wasn't "right" with Jayden. So now we know what isn't right, so it wouldn't be fair for us to purposely put him in that situation. Also, there are a few in my family who just do not agree with his diagnosis. One of them is my really close cousin, but she is VERY opinionated. And maybe I am just uber sensitive (okay I admit, I am VERY sensitive) but it hurts to hear people tell me that I'm babying him and I need to let him grow up. Or that he's a sissy (yeah my uncle told me that at the reunion in August). Or to have other people feeling like they need to step in to help me discipline and they yell at my child, making him go into a fit of rage for me to attempt to calm down. To them, he is just a bad child. And that hurts. So I'm not putting my child, nor myself, through that this year. We will be spending a quiet Thanksgiving dinner here at home. I haven't decided yet where we will go for dinner b/c I'm not a big Turkey and stuffing eater but my hubby is. Cracker Barrel will probably be the equivalent of having dinner with my HUGE family, so that's out! What I do know is that I will enjoy my day with my little family of 3 and thank God for blessing us all with each other and with our health. Have a happy holiday everyone!
Tuesday, November 24, 2009
Quick Update
I've been meaning to update for a while now, but we have been very sick in this house! Jayden is getting over his very first double ear infection and I am getting over a terrible sinus infection and bronchitis that never completely went away from last month. The fact that I am able to open my eyes and actually sit up and type this updates means that I am feeling SO MUCH better. My house is very happy about that. Let's just say that if Mike was a bachelor, he would not keep a clean house!
Anyway, Jayden was accepted into the school system for additional therapy once he ages out of EI next week. The main reason for his acceptance: Autism. He had several small tests done on him during the eval including speech, cognitive, gross/fine motor, and social emotional, along with a GARS-2 eval, which is a screening done to show if a child shows signs of being autistic. Scores or 85 or higher means that the child is "very likely to have autism". Jayden scored 96. I wasn't surprised but my husband is still grasping at straws and hearing the behavioral therapist say, time and time again, that he is just not autistic, gave him the straws to grasp at. He's also been told that as Jayden gets older, the behaviors will disappear. That's not always true in a child who is diagnosed at such an early age. Truthfully, as we see some behaviors fade away (the headbanging), we will see new behaviors show up (lack of eye contact). The silver lining of it all is that, while Jayden does exhibit extreme autistic behaviors, he doesn't seem to suffer from any of the learning disabilities associated with autism. This is a positive and a negative thing for Jayden though. Because he is so bright and social (he is VERY social as long as he can control the surroundings) people will just tend to call him a "bad, spoiled child" when something sets him off and his behaviors spark. That's difficult for me b/c I know that there is a reason why Jayden does the things he does, and in my mind, I feel like once you accept that he is who he is for a reason, then it will be easier to deal with those behaviors. If people continue to view him as the bad child, he will continue to be pushed into situations that he just cannot handle and he will not be able to progress. So, if me helping my child to cope with what I know is a stressful situation to him is considered me spoiling him or babying him, then so be it. I know that he finds comfort in it and that's my job as a mother, to comfort him.
He has one more appt with his behavior therapist prior to exiting EI. She told me that he wouldn't get accepted into the system b/c his speech isn't delayed and b/c he has no social issues and b/c he is CLEARLY not autistic. Well, he tested at a 24 month level in speech and social, a year behind where he should be. I guess someone needs to stick to what she knows and it's obviously not child development.
Anyway, Jayden was accepted into the school system for additional therapy once he ages out of EI next week. The main reason for his acceptance: Autism. He had several small tests done on him during the eval including speech, cognitive, gross/fine motor, and social emotional, along with a GARS-2 eval, which is a screening done to show if a child shows signs of being autistic. Scores or 85 or higher means that the child is "very likely to have autism". Jayden scored 96. I wasn't surprised but my husband is still grasping at straws and hearing the behavioral therapist say, time and time again, that he is just not autistic, gave him the straws to grasp at. He's also been told that as Jayden gets older, the behaviors will disappear. That's not always true in a child who is diagnosed at such an early age. Truthfully, as we see some behaviors fade away (the headbanging), we will see new behaviors show up (lack of eye contact). The silver lining of it all is that, while Jayden does exhibit extreme autistic behaviors, he doesn't seem to suffer from any of the learning disabilities associated with autism. This is a positive and a negative thing for Jayden though. Because he is so bright and social (he is VERY social as long as he can control the surroundings) people will just tend to call him a "bad, spoiled child" when something sets him off and his behaviors spark. That's difficult for me b/c I know that there is a reason why Jayden does the things he does, and in my mind, I feel like once you accept that he is who he is for a reason, then it will be easier to deal with those behaviors. If people continue to view him as the bad child, he will continue to be pushed into situations that he just cannot handle and he will not be able to progress. So, if me helping my child to cope with what I know is a stressful situation to him is considered me spoiling him or babying him, then so be it. I know that he finds comfort in it and that's my job as a mother, to comfort him.
He has one more appt with his behavior therapist prior to exiting EI. She told me that he wouldn't get accepted into the system b/c his speech isn't delayed and b/c he has no social issues and b/c he is CLEARLY not autistic. Well, he tested at a 24 month level in speech and social, a year behind where he should be. I guess someone needs to stick to what she knows and it's obviously not child development.
Saturday, November 14, 2009
Seizures, complaints, evals, and comments
I haven't had time to update, so this post will contain some of it all!
First off, Jayden was evaluated for both the Rankin County (MS) school system and St. Tammany Parish (La) school system. Rankin County took place last Friday morning. Jayden actually only showed a delay in speech, and tested normal in all other areas. We were not surprised b/c we know we have a very smart, independent, observant little boy. However, in Rankin County, he has to be delayed in at least 2 areas in order to continue therapy through the school system. Jayden would be eligible for services in the school system due to his diagnosis, but the evaluation was to help us know what he would need assistance with. So I think the counselor was a bit concerned to see him only show a delay in speech. As we were discussing that, Jayden was with the SLP and she attempted to transition him from one activity to another and I believe he was just overstimulated by everything going on and he exploded. He started with his high pitched scream and ran through the room flipping over every single chair. I stopped him from flipping one chair over and he punched me then ran over to the LONG table the was filled with items and he swiped every single item off of that table and then punched the counselor who was trying to calm him and ran to the door and started beating and kicking it. All of this while screaming and it all happened in about a minute. He continued to scream and kick on the door b/c he was ready to go and he wouldn't calm down. Finally, we moved him to a room right next door with a little bike, for a change of scenery and he calmed down immediately. Now, the counselor looked at her eval form and was circling answers to about 12 questions without even asking us. She told me that she had her answers just by watching what had just happened and that he definitely will need behavior therapy. Funny, how just the week before his BEHAVIOR therapist told me that he didn't need the therapy. She just has yet to see what happens everyday. So we are waiting to hear back from Rankin County and to meet with the team of people who would be working with Jayden should he start school out here. But, honestly, I am going to avoid that at all costs simply b/c I do not want to go through, with the school system, what we are going through with EI.
Tuesday morning, he had his eval with St Tammany Parish. He walked in there on edge, so they got to see everything from the minute we walked in. He was first seen by a child psychiatrist. She asked what our concerns were and I told her mainly his behaviors. She asked what type of behaviors and he showed her. He screamed at her each time she told him to do something. She asked him to stack some blocks and he screamed at her and swiped the blocks off the table. He continued to knock them off each time she picked them up and then he threw them at her and tried to hide behind Mike's chair. She made Mike push the back of his chair against the wall so Jayden couldn't hide and Jayden tirned and faced the wall instead. She finally got him to come close to her by building a train with the blocks. He sat down next to her and played with the "train" but moved away from her anytime she even lightly touched her. From there she was able to see that he would benefit from behavior therapy and occupational therapy in the school system. Next he had his gross motor skills tested and of course he passed that with FLYING colors. They did a speech screening and did confirm that he's average with his receptive speech but delayed with expressive. Also, they needed detailed info on his health conditions. In the end, they told us that he would more than likely have behavior therapy, OT, ST, and even a nurse due to his celiac disease and seizures. He will have a complete evaluation by each individual therapist prior to entering the school system to determine his delay and the goals he needs to meet. I have to say that I was very pleased with that appt and I feel comfortable with them b/c they seemed to pick up on EVERYTHING without me saying anything.
Wednesday, we had his first behavior therapy session since I filed my complaint. Jayden's caseworker came to sit through the session to observe. The therapist arrived and immediately started trying to engage Jayden. He wasn't in the mood b/c he hadn't had a nap. She tried getting him to sit down and do flash cards, but he wouldn't and he kept flipping the chair over instead. Usually, she would just let him flip the chair and then go about his business until she could con him back to the chair with candy. This time, since I mentioned in the complaint that she doesn't work on his behaviors at all, she followed him when he ran off and carried him back to the chair and made him pick it up. Jayden was so upset b/c he is so used to her just being the "fun, candy lady". He actually even calls her "Candy". So to have her to all of a sudden change gears was probably frightening to him. She should have been addressing the behaviors all along though. So anyway, he continued to be naugthy (although it was NOTHING compared to what he could do. This was just exhaustion and frustration) and she continued t bring him back and correct him when he did something wrong, but I could tell it was VERY awkward for her. She eventually just sat back and sighed and said "It's honestly best to just ignore this as much as possible." To which my husband replied, "How do you ignore this (kicking, screaming, breaking things) in public?" She said, "Honestly, I have no idea what to tell you about that." There. She said it. She admitted that she doesn't know how to deal with behavior problems. She does so well with learning disabilities, but my son doesn't have a learning disability. He has a behavior problem. So she can't help him. I can accept that. What I won't accept is her telling me (and his other therapists) that he doesn't need the therapy. Her advice for home was, "Can you put him in his room and close the door until he calms down. Maybe he needs the escape." I told her, I can put him in his room but only if I want him to pull down the drapes, break his furniture, possibly the window, and hurt himself. Sure I could put him in the room, but I love my child and I don't want him hurt over his behavior that he obviously cannot control. The caseworker then chimed in and said "What you saw today is MINOR." and she went on to tell the therapist how he behaved at the school eval. Then, of course Miss I don't agree with Jayden's diagnosis asks, "Did he qualify for help in the school system? The caseworker told her that he did qualify for speech and behavior. So then she asks, "Well did you get his scores back b/c I would be interested in seeing how delayed he is in speech, if he is at all." You know what? When I do get his scores back, she can believe that she won't be seeing them b/c I doubt if she will still be coming to my house b/c I've had it with her attitude. If you don't agree with my son's diagnosis, fine. But don't constantly come to my house and go against everything that we're being told. It has taken us long enough to have closure with this and move on to getting him the help and care he needs, so I don't need her coming here telling me that there is NOTHING wrong and that it's "just us".
Wednesday, Jayden also had his Neuro appt. Basically, the Dr confirmed that Jayden's EEG was indeed abnormal and that he needed to be started on antiseizure medication. I told him that we've seen Jayden stare off into space, tense up and look spaced out during a tantrum, and also just look spaced out for a few seconds, but never have we seen him behave in a way that we can certainly say he's had a seizure. The Dr said that he could be having seizures all day long that we just are not seeing, but there's also a chance that he's not having seizures at all and the abnormal brain waves could be from something else. So he ordered an MRI and another EEG so that he can read the results himself. He told us that at this point, since the EEG is abnormal we need to treat the EEG. But he wants to find out WHY the EEG is abnormal so that he can treat Jayden, specifically. For now, he is on an antiseizure medication called Trileptal. We have to slowly get him to his proper dosage of 5ml in steps. He takes 1ml twice a day for 3 days, 2ml twice a day for 3 days, and so on until we reach 5ml. I do believe we will have to wean him off of the meds again for his EEG. I'm calling the nurse about that on Monday. Today is day 3 on the meds, and I honestly see a difference in Jayden already. Last night, he stayed with a sitter while we went to dinner for my husband's retirement. After dinner, we called to check on Jayden and the sitter said that he had fallen asleep. This is unheard of for Jayden, to fall asleep when he isn't at home in his bed. He actually crashed on their couch. When we picked him up, he was so pleasant and he had no problem going back to sleep once we got home. And today I let him skip a nap since his Nana and Papa were in town. He was so well beahaved. We even had lunch before my parents left and not a problem out of Jayden. Then we went to Toys R Us to do some birthday and Christmas shopping. TRU was a madhouse, but Jayden handle it so well. Not one problem out of him. And now we are home and he is being so calm and well behaved. I do think that it has something to do with the meds. We will see! Especially when I wean him off b/c if the meds are helping to calm him, he will get very irritable when we wean him off.
So that's an update. I also wanted to mention something that offended me Wednesday evening. Ever since we started to notice that something just wasn't right with Jayden, we've been getting comments from family and friends (even strangers) about how he's "just being a boy", it's a phase, he just needs a spanking, he's spoiled, etc. But of course, you all know that I always went with my mommy gut. I'd be lying, though, if I told you that these comments do not make me feel like a paranoid, over protective, first time mom. Also, I admit to being a control freak, so sometimes these comments make me question myself and if I am just wanting my son to be perfect. On Wednesday evening (yeah we had alot going on that day!), we went to a Veteran's day gathering with some of my husband's military buddies. I was sitting at a table with some of the wives and Jayden was in my lap. He still had his bandage on his arm from his blood draw that morning and one of the wive's asked me what happened. I told her about his appt and she asked me about his seizures. I told her I hadn't actually seen what one would expect to see during a seizure, but he does starte off alot and get glassy eyed at times. She said "Please, I stare off! That's normal." I didn't respond. Why do I need to respond? He has an ABnormal EEG, proving that something is not right. She goes on to say how he's just all boy and everything he's doing is normal. I'm so glad that I never let these comments about what's normal and what's not stop me from fighting for my son. Had I listened to those comments, that him not eating or screaming at the dinner table was normal, I would still be stuffing gluten in my baby's belly and tearing apart his intestines. Had I listened to the comments that his out of control behaviors were simply b/c he is a boy/spoiled/needs a spanking, we wouldn't have had an EEG done and wouldn't be looking further into why that EEG was abnormal. I know that these people are only trying to be supportive, but I'm so thankful that God blessed me with the Mommy instinct to know when something is just not right. Thank you God.
First off, Jayden was evaluated for both the Rankin County (MS) school system and St. Tammany Parish (La) school system. Rankin County took place last Friday morning. Jayden actually only showed a delay in speech, and tested normal in all other areas. We were not surprised b/c we know we have a very smart, independent, observant little boy. However, in Rankin County, he has to be delayed in at least 2 areas in order to continue therapy through the school system. Jayden would be eligible for services in the school system due to his diagnosis, but the evaluation was to help us know what he would need assistance with. So I think the counselor was a bit concerned to see him only show a delay in speech. As we were discussing that, Jayden was with the SLP and she attempted to transition him from one activity to another and I believe he was just overstimulated by everything going on and he exploded. He started with his high pitched scream and ran through the room flipping over every single chair. I stopped him from flipping one chair over and he punched me then ran over to the LONG table the was filled with items and he swiped every single item off of that table and then punched the counselor who was trying to calm him and ran to the door and started beating and kicking it. All of this while screaming and it all happened in about a minute. He continued to scream and kick on the door b/c he was ready to go and he wouldn't calm down. Finally, we moved him to a room right next door with a little bike, for a change of scenery and he calmed down immediately. Now, the counselor looked at her eval form and was circling answers to about 12 questions without even asking us. She told me that she had her answers just by watching what had just happened and that he definitely will need behavior therapy. Funny, how just the week before his BEHAVIOR therapist told me that he didn't need the therapy. She just has yet to see what happens everyday. So we are waiting to hear back from Rankin County and to meet with the team of people who would be working with Jayden should he start school out here. But, honestly, I am going to avoid that at all costs simply b/c I do not want to go through, with the school system, what we are going through with EI.
Tuesday morning, he had his eval with St Tammany Parish. He walked in there on edge, so they got to see everything from the minute we walked in. He was first seen by a child psychiatrist. She asked what our concerns were and I told her mainly his behaviors. She asked what type of behaviors and he showed her. He screamed at her each time she told him to do something. She asked him to stack some blocks and he screamed at her and swiped the blocks off the table. He continued to knock them off each time she picked them up and then he threw them at her and tried to hide behind Mike's chair. She made Mike push the back of his chair against the wall so Jayden couldn't hide and Jayden tirned and faced the wall instead. She finally got him to come close to her by building a train with the blocks. He sat down next to her and played with the "train" but moved away from her anytime she even lightly touched her. From there she was able to see that he would benefit from behavior therapy and occupational therapy in the school system. Next he had his gross motor skills tested and of course he passed that with FLYING colors. They did a speech screening and did confirm that he's average with his receptive speech but delayed with expressive. Also, they needed detailed info on his health conditions. In the end, they told us that he would more than likely have behavior therapy, OT, ST, and even a nurse due to his celiac disease and seizures. He will have a complete evaluation by each individual therapist prior to entering the school system to determine his delay and the goals he needs to meet. I have to say that I was very pleased with that appt and I feel comfortable with them b/c they seemed to pick up on EVERYTHING without me saying anything.
Wednesday, we had his first behavior therapy session since I filed my complaint. Jayden's caseworker came to sit through the session to observe. The therapist arrived and immediately started trying to engage Jayden. He wasn't in the mood b/c he hadn't had a nap. She tried getting him to sit down and do flash cards, but he wouldn't and he kept flipping the chair over instead. Usually, she would just let him flip the chair and then go about his business until she could con him back to the chair with candy. This time, since I mentioned in the complaint that she doesn't work on his behaviors at all, she followed him when he ran off and carried him back to the chair and made him pick it up. Jayden was so upset b/c he is so used to her just being the "fun, candy lady". He actually even calls her "Candy". So to have her to all of a sudden change gears was probably frightening to him. She should have been addressing the behaviors all along though. So anyway, he continued to be naugthy (although it was NOTHING compared to what he could do. This was just exhaustion and frustration) and she continued t bring him back and correct him when he did something wrong, but I could tell it was VERY awkward for her. She eventually just sat back and sighed and said "It's honestly best to just ignore this as much as possible." To which my husband replied, "How do you ignore this (kicking, screaming, breaking things) in public?" She said, "Honestly, I have no idea what to tell you about that." There. She said it. She admitted that she doesn't know how to deal with behavior problems. She does so well with learning disabilities, but my son doesn't have a learning disability. He has a behavior problem. So she can't help him. I can accept that. What I won't accept is her telling me (and his other therapists) that he doesn't need the therapy. Her advice for home was, "Can you put him in his room and close the door until he calms down. Maybe he needs the escape." I told her, I can put him in his room but only if I want him to pull down the drapes, break his furniture, possibly the window, and hurt himself. Sure I could put him in the room, but I love my child and I don't want him hurt over his behavior that he obviously cannot control. The caseworker then chimed in and said "What you saw today is MINOR." and she went on to tell the therapist how he behaved at the school eval. Then, of course Miss I don't agree with Jayden's diagnosis asks, "Did he qualify for help in the school system? The caseworker told her that he did qualify for speech and behavior. So then she asks, "Well did you get his scores back b/c I would be interested in seeing how delayed he is in speech, if he is at all." You know what? When I do get his scores back, she can believe that she won't be seeing them b/c I doubt if she will still be coming to my house b/c I've had it with her attitude. If you don't agree with my son's diagnosis, fine. But don't constantly come to my house and go against everything that we're being told. It has taken us long enough to have closure with this and move on to getting him the help and care he needs, so I don't need her coming here telling me that there is NOTHING wrong and that it's "just us".
Wednesday, Jayden also had his Neuro appt. Basically, the Dr confirmed that Jayden's EEG was indeed abnormal and that he needed to be started on antiseizure medication. I told him that we've seen Jayden stare off into space, tense up and look spaced out during a tantrum, and also just look spaced out for a few seconds, but never have we seen him behave in a way that we can certainly say he's had a seizure. The Dr said that he could be having seizures all day long that we just are not seeing, but there's also a chance that he's not having seizures at all and the abnormal brain waves could be from something else. So he ordered an MRI and another EEG so that he can read the results himself. He told us that at this point, since the EEG is abnormal we need to treat the EEG. But he wants to find out WHY the EEG is abnormal so that he can treat Jayden, specifically. For now, he is on an antiseizure medication called Trileptal. We have to slowly get him to his proper dosage of 5ml in steps. He takes 1ml twice a day for 3 days, 2ml twice a day for 3 days, and so on until we reach 5ml. I do believe we will have to wean him off of the meds again for his EEG. I'm calling the nurse about that on Monday. Today is day 3 on the meds, and I honestly see a difference in Jayden already. Last night, he stayed with a sitter while we went to dinner for my husband's retirement. After dinner, we called to check on Jayden and the sitter said that he had fallen asleep. This is unheard of for Jayden, to fall asleep when he isn't at home in his bed. He actually crashed on their couch. When we picked him up, he was so pleasant and he had no problem going back to sleep once we got home. And today I let him skip a nap since his Nana and Papa were in town. He was so well beahaved. We even had lunch before my parents left and not a problem out of Jayden. Then we went to Toys R Us to do some birthday and Christmas shopping. TRU was a madhouse, but Jayden handle it so well. Not one problem out of him. And now we are home and he is being so calm and well behaved. I do think that it has something to do with the meds. We will see! Especially when I wean him off b/c if the meds are helping to calm him, he will get very irritable when we wean him off.
So that's an update. I also wanted to mention something that offended me Wednesday evening. Ever since we started to notice that something just wasn't right with Jayden, we've been getting comments from family and friends (even strangers) about how he's "just being a boy", it's a phase, he just needs a spanking, he's spoiled, etc. But of course, you all know that I always went with my mommy gut. I'd be lying, though, if I told you that these comments do not make me feel like a paranoid, over protective, first time mom. Also, I admit to being a control freak, so sometimes these comments make me question myself and if I am just wanting my son to be perfect. On Wednesday evening (yeah we had alot going on that day!), we went to a Veteran's day gathering with some of my husband's military buddies. I was sitting at a table with some of the wives and Jayden was in my lap. He still had his bandage on his arm from his blood draw that morning and one of the wive's asked me what happened. I told her about his appt and she asked me about his seizures. I told her I hadn't actually seen what one would expect to see during a seizure, but he does starte off alot and get glassy eyed at times. She said "Please, I stare off! That's normal." I didn't respond. Why do I need to respond? He has an ABnormal EEG, proving that something is not right. She goes on to say how he's just all boy and everything he's doing is normal. I'm so glad that I never let these comments about what's normal and what's not stop me from fighting for my son. Had I listened to those comments, that him not eating or screaming at the dinner table was normal, I would still be stuffing gluten in my baby's belly and tearing apart his intestines. Had I listened to the comments that his out of control behaviors were simply b/c he is a boy/spoiled/needs a spanking, we wouldn't have had an EEG done and wouldn't be looking further into why that EEG was abnormal. I know that these people are only trying to be supportive, but I'm so thankful that God blessed me with the Mommy instinct to know when something is just not right. Thank you God.
Thursday, November 5, 2009
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".
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".
Tuesday, November 3, 2009
For Miss Lou...
Or as Jayden calls you, "Woo Ahn"
I want to thank you for being the best therapist, in my (and my husband's) opinion, on Jayden's team. You are so passionate about your job and show your concern and love for the kids you take on. You've done more for Jayden in 6 weeks, than the other therapists have done in 1 year. You never let Jayden's "off days" or unnecessary roughness get in the way of helping him to achieve his goals. If something doesn't seem to work the way we expected it to, you tell me that you will "go home and brainstorm" and you honestly do just that. At the next appt, you come armed with more information and advice. I know that you are sad that Jayden will have to transition out of EI next month and I know that you would love to continue working with him, and we feel the same way! We will miss you terribly, but you've equipped us with TONS of knowledge and items to help Jayden out with his sensory issues. Thank you so much for the countless handouts, developmental charts, the copy of the Sensory Smart Child has Fun, the ear plugs (for Jayden folks!!), and the noise reduction headset (again, for Jayden although I did put them on today during a tantrum!). Finally, I appreciate the way you offered to step up and help with his behavioral issues, even though it's not what you are trained to do. That's called going above and beyond and I thank you for it.
So, Miss Lou Ann, we LOVE YOU and we will miss you when Jayden transitions out of Early Intervention next month, but I thank God for sending you our way for the short time that He did.
I want to thank you for being the best therapist, in my (and my husband's) opinion, on Jayden's team. You are so passionate about your job and show your concern and love for the kids you take on. You've done more for Jayden in 6 weeks, than the other therapists have done in 1 year. You never let Jayden's "off days" or unnecessary roughness get in the way of helping him to achieve his goals. If something doesn't seem to work the way we expected it to, you tell me that you will "go home and brainstorm" and you honestly do just that. At the next appt, you come armed with more information and advice. I know that you are sad that Jayden will have to transition out of EI next month and I know that you would love to continue working with him, and we feel the same way! We will miss you terribly, but you've equipped us with TONS of knowledge and items to help Jayden out with his sensory issues. Thank you so much for the countless handouts, developmental charts, the copy of the Sensory Smart Child has Fun, the ear plugs (for Jayden folks!!), and the noise reduction headset (again, for Jayden although I did put them on today during a tantrum!). Finally, I appreciate the way you offered to step up and help with his behavioral issues, even though it's not what you are trained to do. That's called going above and beyond and I thank you for it.
So, Miss Lou Ann, we LOVE YOU and we will miss you when Jayden transitions out of Early Intervention next month, but I thank God for sending you our way for the short time that He did.
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