Jeffrey’s Major Meltdown
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I really don't know how to start this. The day started out fine. The pca came over and we left to go to the beach. Our first wrong move is we didn't take the route that Jeffrey thought we should. So he started obsessing about his landmarks immediately. After we got out of the car and started walking towards the beach he kicked me. I and the pca told him on the way home we would let him see his landmarks, not good enough. So she decided to take him for a walk around the beach. Or just a walk. You can't walk around the whole lake, you run into the freeway. When they got back she said he had four or five minor meltdowns but they reached a compromise. She would drive him where he could see the landmarks once we left. He started a mini pestering on seeing it right then but dropped that. A bee was bugging him. The water was too cold. His paper was no good. On and on and on. So we eventually leave. On the way home we drive where he can see his landmarks. He said he was happy. We then get home. He is not happy to be home. So the pca said she will take him on a quick walk. That isn't good enough. Comes back in, you can tell he is about to go into meltdown mode. The business lady has to stick her nose in and say that isn't nice. I say I am trying to redirect him, one adult at a time, goodbye. He sticks his tongue out at her. She leaves. I think. He starts going on a rampage, saying he has to see his landmarks twice today. I have never seen him this violent. Tried to go outside. He kicked me. Cussed me out. Spit on me. Scratched me. I called 911, he tried to rip the phone out of my hand. After I completed the call he broke the phone. He started charging me, would follow me from room to room, spitting at me, calling me every name in the book. At one point he had a rage type seizure. Nothing worked at all today. What brought me to tears is when he told me he hated me and wished I was dead. Yeah I know he didn't mean it but it still hurts to hear those words out of your own child's mouth. He even attempted to hit me with the phone. As soon as the cops get here he calms down just like that. So the ambulance took him over to Fairview for an evaluation. I called his neuro after he left. Another thing he did today was recite lines in a movie, use them in a conversation. He has never done this before. The neuro said he is going into truly autistic mode. We could wait and see if the depakote increase will take effect but she doesn't want to take the chance. She said Fairview might put him on an emergency neuroliptic drug. But they might not keep him overnight. She agreed that with the way he is, he cannot even go back to school once it starts. I did get a call from the emergency room and they did say he was calmed down. And the behaviour specialist doctor would be calling me. So for any doctor that says after a child is diagnosed with autism that they don't regress, that doctor ought to have their license yanked immediately!!!!!!!!! Jeffrey is a prime example of a child that is regressing. Tammy Oh Tammy, I'm sorry for what you are going thru. I know it must be tough but you are doing the right thing. Please know he doesn't mean those things, they were said out of anger and probably doesn't comprehend what they actually mean. You are so good to your boys and I think that he could get the help he needs while being in the hospital. Hopefully your nuero will beable to provide you with some answers/help. I'm here for you! - EileenThe update on Jeffrey is as follows: Both Fairview and the neuro agree he needs to be put on a neuroliptic because of the physically aggressive behaviours. Protical says you need to do a liver function test via a blood test before putting him on a neuroliptic. The neuro will see him this Thursday. The new medication will be in addition to the medications he is already on. So that would be four medications during the day, not counting the multi vitamin with iron he needs to take because of the depakote. The hospital does not believe it is a mania type episode associated with bipolar since my brother has bipolar. They want to do a mental health evaluation. In addition to being on a neuroliptic they want him to see a psychriatrist. The social worker said he might need a sensory integration study and the hospital agrees. The social worker mentioned doing applied behaviour technique, we will see on that one. The hospital said it is a combination mental health issue and autism issue. There is a thin line between the two but it is invisible at this point. The hospital did say once they get older it is quite common to see hehaviours like this. The neuro said until we have a better control over the situation we cannot send him back to school. The hospital agreed with this. Even said they can get me an advocate to help me with the school. Or maybe I should just throw a Terrell Owens type fit on the school. That should get their attention. Also the social worker did say I could possibly get a behavioural aide for him at home. Wonder if I could send the behavioural aide to school with him. Regardless he won't be going back to school until we have a meeting. Behaviours can be ignored so long. Once they turn violent you have to do something about it. At this point that is all I know. And my head is pounding already. Tammy Also wanted to add a thank you to all of the positive responses. I really do appreciate it. Now I think I am getting whatever bug Gabe has, lol. Oh the joys of motherhood!!! Tammy Tammy,.... as we know habits and routines that autistics have DONT ALWAYS make sense. Thats common with an ASD. So is OBSESSIVE TYPE BEHAVIORS. You have to do what you feel is best as his mom. And as many have already said they think you are doing a pretty darned good job. OBSESSIVE BEHAVIORS DONT MAKE SENSE.... People with OCD who wash their hands over and over and over until they are raw and bleeding don't learn and stop from the pain so I dont see how laughing and teasing will change it either. Jeffrey seeing his landmarks is an OBSESSION (correct me if Im wrong) In all probability, seeing his landmarks and taking a specific same route daily to certain places makes him feel safe and secure... its part of the needing routine, structure, and predictability. Jeffrey not only is obsessed with maps to always choose the same routes, but also needs to use the same routes because they are programed to memory and in an autistic's eye if it isn't done exactly so then its wrong and they will lose it and meltdown because its not as it is memorized which is their skill of coping. Makes sense to me why he needs to see the landmarks. Also with an lack of comminication skills.... its more than just being verbal vs non-verbal. Its the ability to realize feeling and be able to communicate them and to problem solve. Have you noticed times when Jeffrey has meltdowns or increased anxiety over needing to see his landmarks? Perhaps more distressed if you go several places instead of one or two.... Perhaps more distressed if you are gone hours vs a short brief period.... Perhaps more distressed if he goes somewhere traumatic for him like a dr appointment.... Perhaps if he sees something on the news like a fire or an act of terror.... He may be obsessing and cant communicate to you why its so important to him to see it... all he can say is I need to see it twice which may sound controlling but with lack of communication and problem solving skills maybe thats the only literal speech he can come up with... Maybe hes trying to say I saw something in the news on TV that happened near my favorite landmark and I need to see that its still there and that everythign is ok. Getting to the point of solving the obsession has to start with understanding where the obsession comes from... And yes I agree take away that obsession and he WILL find something else to obsess on so pick your battles! Im wondering if having the road started with construction has caused Jeffrey to become more distraught? These kids don't have the ability to comprehend what we take for granted... A road under construction is a nuisance but we know they are trying to improve it.... Our kids may see it as alot of NOISE (to bother with the sensory integration dysfunctions) which may also cause vibrations and lights flashing and smells we don't even typically notice but the kid is Hypersensitive to. These kids also memorize things to keep a peace... they might not be able to give someone an address to where they live, but they can show them on a map or get there by taking the same route and passing by MEMORIZED LANDMARKS! Seeing the landmarks or taking the same route is calming and comforting to them and relieves the stress of what if we get lost (and most do have anxiety issues over what we consider silly - again the inability to problem solve, rationalize etc) Being your street is now under construction Jeffrey may be worried it is happening everywhere..... Maybe he is relating it to having seen the events of 9/11 and maybe he cant problem solve... communicate to you his concern... ask the questions... and understand the response. Maybe he is concerned they will take down some landmarks and he wont be able to find his way home when he goes somewhere..... Maybe he is concerned it is happening across town to another landmark which helps to locate his school where he spends the majority of his time and he needs to check on it to make sure its there and everything is ok because for some reason these kids have to do it over and over and over again, just like they have to watch the same movie over and over and over, just like a person with OCD has to keep getting up out of bed 100 times a night to be sure they locked the door or turned off the lights or set the coffee pot etc. In my opinion sometimes refusing to allow the obsession can create a bigger problem with anxiety resulting in bigger obsessions or refusal to leave the home. In my opinion trying to control the obsession with a routine might help. Maybe take some pictures of his favorite landmarks..... Heck let him if he is able to! Have them developed and have him help decide which ones are his favorite. Blow one or 2 up and hang them in a frame in his room so he can see them when he wishes. If you have a video camera or are able to borrow or rent one maybe take him for a day and videotape him seeing all his landmarks so he can watch it when hes distressed like on bad weather days..... Take the photos and put them in a small photo album he can carry with him..... make a social story with them. Before you go somewhere prep him... We are going to the beach we are going to take X route.... I wouldn't necessairly point out new landmarks to him on each route out of fear of him adding it to his obsession list,... but if there are landmarks he normally likes I would maybe say we will see such and such landmark. Let him know when you will be seeing his favorite landmarks so he knows when to expect it and it is predictable to reduce his anxiety about it and his possible fear of it being gone and never seeing it again. Maybe for right now you can make a schedule to go see it once a day.... prepare him with a calander and pictures or words on the calander the eventa that day to see the landmark.... have it so he can cross it off and keep track... if possible go the same time each day (after lunch for example) and say we are going to go see your landmarks.... after a while cut the trips down some kids may only be able to tolerate one day skipped out of the week... others may be able to tolerate more... but slowly cut down how frequently you go see it. If he has a reward chard add a cupon to go see his landmark as part of his reward system. The whole key is understanding the anxiety, worry, fea,r what-have-you that these kids have over it that causes them to obsess and VALIDATE their concerns.... it helps them problem solve rather than think they have to be in charge of memorizing everything. Its not uncommon for kids on the spectrum to need the predictability of a same route.... its no different then them needing to have the same schedule at school (always doing morning work then having a break going to special having a story going to lunch then recess etc.... try switching that up and its chaos!) Sure it can be annoying for us to have to try to understand and deal with the obsessions.... but for our kids there is a purpose behind them and something that is NEEDED for them. They aren't trying to be manipulative and controlling like so many people think..... I know over the spring or summer he did add a landmark. The old flour mills here. Back in the early 20's there used to be alot of flour mills here. Now he doesn't obsess over that as much as he does the U of M but I didn't start that one either. The school bus aide started that one. I know he started out with the Metrodome. Hey I still use that landmark when I am downtown. If I lose site of it I know I am lost, He doesn't like road construction or detours. He hates being stuck on traffic ramps. He thinks my car, when I had one, had a button you could push where it could fly. How I wish!!!! Now in chat last night I was talking about one particular landmark here. The old Sears Building. They have been working on that since 1990 I believe. But it is by his old school. So maybe he got used to the way it looked. And in the last three years they have tried to do something to it. You could tell they took off the front of it, put up boards on the windows on the main level, put a fence around it, and there is alot of construction equipment around it. And plus with them redoing lake street. So in his mind he might think it is similar to 9/11. We, you and me, know it isn't but you have to think the way he does. And during summer school he had to pass that building everyday. And remember on the morning of 9/11 they did shut down the Mall of America here because at one time that was one of the original targets. Also when we lived in NE Minneapolis you could hear the military planes flying overhead at night. And I know they did shutdown one of the bridges here because of a security breach by the dam. Now when the London bombings happened I did not let him see that. But of course he wanted to ride the train that day to see his landmarks. I told him not today and yes I lied. I said they shut it down for the day because of something that happened overseas. Easier to say that than explain to him what type of security measures they had in place. I did tell him we would ride it the next day, which we did. I know when his depakote level was at 51 we had less of these obsessive type qualities. And his teacher knew how to communicate with him quite well. It could be his new school just gave in to him too easily. I already know they dropped his social stories and weighted blanket. So they are not on the ball here. Also his IEP is very specific on what transportation is suppose to do. But what they are suppose to do and actually do is always two different things. Now I will say that the hospital they took him to yesterday is over there by the U of M. But that place is big!!! And I have no control whatsoever over which hospital is better equipped to deal with him. Now I will say this about that hospital, I felt like I was back in the Wizard of Oz and following the yellow brick road, lol. To get to where he was out was taking alot of turns. True the hallway wasn't yellow but the sign for the clinic was, lol. You won't be escaping from there. Its not like I don't ignore the obsession. I do ignore it but when the kid starts getting aggressive with you, what else are you suppose to do? And his good teacher did tell me that there would come a point where it would get out of control and I would have to send him to Fairview. And we all know how the public perceives these kids. Since Jeffrey doesn't know how to joke or even kid, no way am I gonna tease him. And rule #1 in meltdown situations is you get the kid to a secure location. And ignoring the behaviour while he is next to a body of water is not a good idea, if you know what I mean. But once again thank you to all the positive responses. And thank you once again for the links Michelle. You are the first person to actually show me any links, not the school. And I do hold the school partially responsible for his obsession. Tammy Dear Tammy, I am so sorry to hear about what happened... my thoughts are with you and Jeffrey. Hang in there, there are also good days! Jo. Tammy, I waited for you in chat for a while last night and then I had to go so I missed you comming back in. Thanks for the update on Jeffrey. How is he today? How are you doing. I realize that you updated but in your update you really only mentioned the things that the doctors said etc but not how you guys are feeling today. You all must be exhausted. I am thinking of you all. Take care, Karrie I rarely get on, but I am just so sorry that this has happened to your family. I will be holding you all in my thoughts and prayers (( hugs)) if ya want em|!
Tammy just read through all of the posts I am so sorry for what is happening with Jeffery you are doing a good job and doing what is best for him. Don't ever let anyone tell you different. I will try to join chat tonight. Thinking of you and Jeffery, Nita Hugs to you, Tammy! I just wanted to let you know that you and your boys are in my thoughts today. Hang in there, girl. You are an incredible mom! I am sorry that you guys are going through this. Love, Tammy trying to play detective work here LOL............. Didnt you mention the landmark Jeffrey likes being a HIGH RISE? Does it possibly (to him) resemble the twin towers? Maybe he recalls seeing the traffic stopped when they shut down the bridge with 9/11 ans maybe he starts to have some sort of panic attack? Maybe seeing everything working ok gives him inner peace..... Also maybe Jeffrey is recalling the events of 9/11 by associating the start of school with being around the same time it took place (hes only a few weeks off) and Maybe seeign the Sears building starting to have more done or Lake Street being tore up maybe hes thinking hes in a war zone ESPECIALLY if he ever hears any of the news on TV and trust me Tyler can hear whats on in the livingroom when hes at the other end of the house in his bedroom! Maybe the change of the different school was too much of a transition for him ... Maybe since he couldn't see his landmark from the window it upset him greatly.... then add in the fact they didnt take the same route and follow his IEP! So many little things that happened I bet he is totally stressed! I hope even one of those links helps! I really do..... Obsessions are no fun, especially when the child is really stressed over it.... Can't the stress cause him seizures too? I sure hope you find a solution soon. And please let us know how he (and you) are doing. Gee how is Jeffrey doing? I know last night even before he left the hospital he was obsessing over his U of M again. And he was right there by it. He wanted to go to the top of the building and see it. While we were waiting for the bus he started on it again. I told him to stand up on the bus bench and see if he could see it. He claimed he did but who knows if he really did. Last night he thought he was gonna do the computer. I told him nope, not after what had occurred that day. Now I did let him do his game before he left for daycamp today. So far they haven't called me yet. So I take that as good news. But the lucky kid was going on a Mississippi cruise today. Why didn't I have these great field trips when I was his age? Lol!!!!! True he will probably be able to see his landmarks on his cruise but not my problem. Oh yeah, because Jeffrey was getting too much attention Gabe had to show his butt too. Whining like a baby. When we were waiting on the bus he said he wanted to walk home. I told him no. He then said I was jealous. I asked him over what. He said "I can walk!!!". Lol, I told him that I have two feet, I can walk too. I also got a call back from the director of Special Ed. She said to call the social worker at his school next week and set up a meeting. If I have any questions or problems to give her a call back. I have a feeling Jeffrey will be spending alot of time home this school year. I really don't know how I am doing. My support system here is not very helpful at the moment. Thats not counting his neuro. Because she is great. She listens to me. And Karrie, I was hoping you would had had your baby by now. Maybe we should send Jeffrey there and let him talk non stop about his landmarks. I bet that would make the baby want to get out and away from here real quickly Tammy You know Michelle that is interesting. Because alot of people have nicknamed the area the old Sears Building is in as a "war zone". Its in the inner city, alot of gang activity, drug dealing, prostitution, shootings, etc. I know yesterday in the car I said to the pca that Joyce wasn't back from vacation yet. And Jeffrey thought I said Joyce is staying in NYC. How he got that out of what I said I don't know. But at the time we were out there by the airport and Fort Snelling. And he would assume that planes from here fly to NYC. Last night he did say the route we didn't take was the way his first school took to go to the Apple Orchard. So it seems like everything goes back to the first school. Tammy Wow, Michelle. You know what..that is a incredible observation. Tammy, I know we've discussed that your boys start school after Labor Day, too. For us, I know that 9/11 happened on the morning of the 4th day of the school year, so it wouldn't even be a few weeks off - just days. I myself associate 9/11 with the start of the new school year. Even today, a work mate and I were talking about some of our 9/11 anxieties (some of which I have never discussed with anyone). And the high rise building being there makes incredible sense. You know, living directly across the Hudson from the WTC, and NOT seeing them, causes me a little distress, every day! I don't think I have ever said this to anyone, but every day when I look across the river, and I don't see them...my head sings a line from a song (which I'm not going to share, cause I don't want you to think I'm crazy). But I now realize that I've said this to myself every single day since. Again, thinking about you! Hugs,  I think one reason not to add to the obsession is the routine. As it is if we go to take the light rail, he will see his Cedar and Riverside highrise, which is over there by the U of M, the KSTP tv station tower, the metrodome and downtown. You see all of this in one area. Its almost like a ritual with him. He has to see them in his order or everything is off for him. The same with the route he takes. It has to be the same everyday or it is off for him. So if there is a road detour you can imagine what we go through. Oh yeah I forgot about the fourth obsession he has and that is the weather. He will throw an absolute fit if it is cloudy and he cant see his landmarks. Like I control that? I wish!!!! Now I know on Thursday he has the appointment with his neuro. And the hospital she is at is right across the street from the Metrodome. Some might say that is feeding in to the obsession but I didn't put the Metrodome there. Now he does have some landmarks that are not Twin Cities specific. He used to like the World Trade Center. Maybe because it was tall, I don't know. He used to play Simcity alot. And that had the WTC in it. But right after 9/11 he refused to play it. His reasoning was the WTC was no longer here so he shouldn't play the game that had it in it. Now occassionally he will ask me if they are gonna rebuild it and I tell him they are working on it. Of course his "working on it" and ours "working on it" is two different things. He thinks they should had already rebuilt it. Now I have added some basic history lessons on some of his landmarks. LIke with the MIssissippi River I ask him does he know how far down it goes. At first he didn't know but I told him in simple language the states it goes through. Wow, if he thinks it is big up here, he hasn't seen big until he has seen it down by Memphis. Tammy I totally feel you (and Jeffrey) on the needing the same route to places...like I've told you before, Riley is the same way (but I don't think quite so seriously as you have it)....I've taken other routes too, to show there are different ways of going other than by the "blue park" or "by the bridge" (he's younger! - littler "landmarks") but it truly THROWS him for the day....he'll start saying over and over "it's the wrong way - it's the wrong way" Even once he sees we got to where we needed to, he can't get it out of his head that we didn't see those particular things he always looks for...so it's like he's confused and can't get over it. ~Lesley Awagner - what I ment by not adding landmarks to his obsession by pointing out other landmarks was this,..... Don't know exactly how it goes for Jeffrey but for my son he gets obsessed on his flavor for the time... example we say toy story 2 and he became obsessed with it, he had to wear clothes and be just like woody.... he had to have every toy story 2 toy he saw so he could play toy story 2... you couldnt use one of his sister's toy horses in her barbies or a stuffed animal she had as bullseye he had to have THE REAL bullseye or it wasnt right and without bullseye it wasnt a complete set so he couldnt play... With all the scharacters he would re enact the scenes from the movie... no he didnt get any imaginative play in there... But even when he had all the characters and was able to play it if we went somewhere and he saw a new toy story 2 character (ESPECIALLY a new woody) he went beserk and HAD TO HAVE.... HAD TO HAVE.... HAD TO HAVE the new woody. He would literally go into a panic attack over it if I walked away screaming, biting himself, hitting himsel,f banging his head, crying, throwing himself on the floor..... So I was concerned if Tammy pointed out new landmarks to Jeffrey to say Look theres other landmarks you dont have to see just the U of M theres this and that and over this was somethign else then it might be even more landmarks Jeffrey would HAVE TO SEE in order to feel all was "right" Tammy - I don't think you are feeding his obsession.... You're right you didnt put it there! And like I said before its not unusual that he needs to see them or has a fit..... Many autistics and others with language disorders, etc. need to have routines they follow.... Some can't tell you their name or address but they can ride a bus and get around town because they memorize the schedules and LANDMARKS! I think right now Jeffrey has had SO MUCH CHANGE hes more obsessed with landmarks for his way to self regulate........ of course thats just my opinion The neuro's secretary called me and said they goofed up on the scheduling. Her secretary was out that day. So the neuro had emailed her secretary and told her either early morning or early afternoon. It has been switched to 1p.m. Oh the incompetent people. Tammy (((((((((((((((hugs))))))))))))))))))))) I'm thinkin' of you hon...just read most of the posts here...wow, so hard on all of you guys! I'll keep you in my prayers hon...wish I had some good advice but my guy is only 4 and we aren't dealing w/ the similar stuff right now, bless you and you are one strong lady!!!...just want you to know I'm here for you! another hug if you want it ; ) Ali Tammy, I have been reading all you write about Jeffrey and I just realized that Nick needs to go the same route everytime we go into town. He knows where Wal Mart is and he knows what roads take you there. If we go a different way he will freak and tell us no this way and jerk his body as if to move the car in the way he wants it to go . I know that he is alot younger than Jeffrey but should I be concerned that he might not outgrow this?? Should I be trying to stop this now? Just starting to realize that our kids don't usually outgrow there obsessions!!! Michelle, What you said about Tyler and the movie and having to wear the clothes and have the toys and act out the scenes from the movies....OMG we live this all the time!!! I have gone on searches for characters to movies!!!! It is nuts sometimes especially if he can't find one of them when he is watching the movie!! Needless to say we never get rid of any of his toys because if he happens to watch the movie he will be searching for the toys that go along with it!! Nita [QUOTE=WonderGrl1000]Well, my information came from my spouse who is a behaviorist and specialist with children on the spectrum. I'd be happy to email you her Vitae - it's very impressive and she's one of the best ones in NC. I was just offering suggestions that most people pay for. None of the children she works with have severe behavior problems. She's taken the most low functioning children and mainstreamed them. She's tough - but I'll tell you what - it works. All the best, Melanie [/QUOTE]
I haven't even read past this yet but wanted to ask wondergrl are you a boy or girl? I'm sorry I was confused by this post because you sign your name as melanie, but in the beginning you say your spouse is a she. Am I just confused? Amber Ok now I've read the rest. Just wanted to extend my thoughts to you and your boy. Ds is only 2 and not even dx'd yet, but he is already starting to be very difficult especially outside the home. I often dread taking him anywhere now. Yet I can't imagine having to go through what you do. I guess it can get easier or can get harder as they age. Or maybe both off and on during the older yrs. I mean preadolescence (spelling?) is hard enough w/out asd or ocd. Poor kid. Best wishes. Amber Tabitha,My thoughts are with you. My son is 13 and can be quite violent at times. We are talking about doing a review in hospital of his drugs as well. I feel a lot of it is puberty on top of every thing else. My son had the issue of needing to go the same way or we would have a meltdown but I managed to deal with that when he was three. I used to change the way we went on purpose to get him used to it. The problem is that what you can manage at three can't be managed at 13 when they can really hurt you. My son threatens to kill me as well and also says he is going to burn the house down. I agree that you can lose one obsession and just gain others. I thought I knew exactly how to handle my boy and the last year has shown me that nothing is simple. I have hope though. Friends with older children say it does get better after puberty. I am sure from all of your posts that you are doing the best that anyone could do. Thank goodness your neuro is supportive. I have had to bring my son home from school as well because of violent behaviour. I usually feel so bad that he has done the wrong thing again. Hugs, hugs and more hugs. I hope the neuro works the medication out soon. Nita it could be he is getting stuck in a routine of taking the same route. I am no specialist nor do I live with one but I suggest maybe doing social stories with him before you go to get him prepared for a different route. I remember his neuro telling me years ago that if you don't the child to continue a behaviour you have to stop it immediately. And she did say she knows that with some behaviours that is hard to do. Cheryl I do realize how lucky I am to have the neuro I have. Today his ei that is doing the in home summer school with me was telling me that Jeffrey was not the only kid to have major issues with where the summer school was located. So it does seem to look like the District never even considered how having the summer school at a different location would affect the autistic kids. Once again I thank everyone for their positive comments and supports and even the suggestions. When Jeffrey is like this it makes me wish for the days when he was four and five. He was easier to handle then. Tammy Ok now I understand why it could add to the problem especially if you dont travel those areas frequently if "new " landmarks would be added. I do think that it is actually a good thing though that he knows the landmarks where he lives so well because he is unlikely to ever get really lost. It is such a shame that "talents" like this can be so maddening in this case, because landmarks can be so interesting to learn. I think a lot of parents of "normal" children would be thrilled if their kid took an interest in landmarks rather than some of the crap kids these days find interesting. You really seem to have your hands full but it sounds like you are handling everything pretty well and even when you are venting it sounds like you are finding solutions and that is what is important.
Jeffrey is being sent home from daycamp today because he has a fever and a headache. Now Gabe was sick over the weekend and said he had a headache but with Gabe you just never know. Now his Zoloft was recently upped to 100 mg.'s a day. And I know you can have headaches with Zoloft within the first two weeks of taking it. Question is, can you also have headaches after upping the dose? Tammy I am guessing that YOU must about now how a headache too
[QUOTE=tabitha] Jeffrey is being sent home from daycamp today because he has a fever and a headache. Now Gabe was sick over the weekend and said he had a headache but with Gabe you just never know. Tammy [/QUOTE]Gabe was sick Saturday with it. And I believe he got it from daycamp too. Or maybe another kid had the bug and passed it around. Anything is possible, lol Tammy Hi Tammy,Sorry to hear the past few days have been so rough!! I wish I had some really great solution to share.......unfortunately I am like you.....I just try to find the best ways to work with my kids on the hard days......pray we get through them and thank God for the good days or the noneventful days! I really realize our days are much more dramatic than the average family.......never a dull moment!! So if I said I wish you dull moments......that would be a good thing.....a bit of the "norm" an uneventful day.......a day with no tantrums.....no fits.....no arguing or fighting.......a bit of peace and a nice sunny (cloud free) day! I hope things work out soon and you can have all of that and more!! With my thoughts and prayers, bonnie Thank you Bonnie!!! It actually made me laugh and smile to even think about a normal , peaceful day. With them at home!!! Lol, seems like the only time that happens is when they are gone. I would take some dull moments at this point. It would almost be a blessing. Of course I would be thinking "they are too good, whats up with them?" Tammy Hi Tammy , sorry to hear about your day !!! IT WILL GET BETTER !!! kinda like AA one day at a time is pretty much what we do with iur kids cause we don't know what is gonna happen day to day !! Keep your chin up you are a great mom !!!! Well the day didn't start off too well. Gabe decided to be in a foul mood all day. Plus it was raining. And we all know or just reminding you that is another one of Jeffrey's obsessions, the weather. I am suppose to have a magic wand to control the weather somewhere. Must had threw it out at some point. So I was telling him all morning that it might be raining. He was fine.............until we go outside. "How do we get to the bus stop, its raining." I tell him "run". We get on the bus and he is unusually loud. Asking why it is raining. People are looking at him. I tell him it is part of the weather. So while I am talking to him I happen to look over to where Gabe was sitting and he isn't there. So I go check, never know if he decided to get off the bus. He was laying down in the seat. I told him to sit up. So on the light rail Jeffrey was okay. Hey he got to see all of his landmarks. So he was happy. We get to the doctor's office and it is noisey there. I am so hoping I don't have to be in the waiting room long. Hey at least we were on time for a change. So the neuro comes and get us. She had fit us in between patients so we didn't have that much time. So she put Jeffrey on Risperdol, .5 mcg, one pill twice a day. She said she hates this drug but at this point we have no choice. Also that in some cases it can be a brain inhibitor? It can actually interfer with the way the brain acts? She also put him on Cogentin because some kids on risperdol will have stiffness of the limbs. So this second drug is to act against that. Now she did say she hopes these two meds are just short term fixes. Because at this point we have no choice. She said a sensory intregration study is a good idea if the school would do one but don't waste my time or energy trying to get one done. She still believes his thing with landmarks is an obsession. She did put in a referrel to the psych department for him. Fairview has yet to call me back on a appointment for a psych there. She also said I would hate the increased appetite that comes along with the risperdol. And I need to have a school meeting before he even goes back to school. But in her opinion they won't want to have one until two weeks into the school year. And I did tell her about Jeffrey being sick yesterday and she could tell he wasn't feeling 100%. She has these windows in her office that he usually goes up to so he can see his landmarks. And he didn't do that. And he wasn't obsessing over the weather either. And she will see him in a month to monitor his progress. So here is the bigger question. Taking into account he has the obsession over food. And I mean when he wants it he wants it now!!!! And that risperdol increases the appetite, what will the school say? Will they say I have to furnish the added food? Keep in mind you never know what food he will obsess over. It could be the Red Lobster commercial on tv. Or will the school try to duck and hide? Also as it is now I don't think the school could handle him anyway. They would be sending him home. And I do want the neuro and the good teacher from the second school at this meeting, along with transportation and anyone that will be working with him that school year. So I guess Jeffrey won't be going back to school anytime soon. Tammy Tammy Not sure what to tell you about the food obsession and increased appetite. It is a side effect though not every child gets it as a side effect (We can HOPE right?) I know it increases Tyler's appetite but not the variety of food he eats... at school though he just has to wait... they wont allow him a snack... now we're obviously talking different schools and their abilities to handle asd's. One suggestion would be to right not start a food journal with Jeffrey (behaviors too if possible) just keep a notebook in the kitchen and any time he eats write the date, time and how much of what he ate... Obviously the neuro is keeping track of weight because thats always the big concern with the increased appetite. My thought is with a food log you might be able to 1. show the school his appetite (and the dr) and 2. maybe prefict ideas of foods he will want to eat (if they are all crunchy, sweet, starchy, etc. Then when you have the meeting you can show them the list and propose a plan for him witht he help of the dr and the school. I know at our school parents are made to send in the snacks the school doesn't even have breakfasts.... they only provide lunch should you choose it. But again different schools. Good Luck! Just an FYI too,.... there are risperdal links in the newbies thread under Medications if you want any info on it... Michelle thats a good idea on the food journal. Today he wants to do that non stop laughter, oh fun, not!!! And of course on the cogentin the pharmacy didn't have enough to fill the prescription. Why is it I always get the prescriptions the pharmacies I have "special order"? Oh they provide breakfast here but then again better not let him see the menu or he will expect that to be served. It is a logical conclusion though. I will have to check out those links on risperdol but I can't say I wasn't forewarned about the appetite increase. Not like I don't spend enough at the grocery store as it is, lol. Tammy Tammy, ~Lesley Hey Lesley Thats a GREAT idea for the dr to write a letter!
Tammy Let me first applaud the letter idea--brilliant. Next, what about having the neuro. What about having her phone conference in to the IEP meeting at a specified time for 10 minutes. At the 1 hour mark or something to answer questions or concerns that have come up during the meeting? Just a thought. You guys do get me thinking. I'm becoming a bit radical even. God help the school the next time we have an IEP--I have sooooo much good info now. Rock on. pat Oh Tammy, you're absolutely right...have her there if she can be! And yes, the more people we have the better. The problem is, at least for us, is that we've become so "isolated"....who other than doctors ever see us anymore?!?!?Great idea....hope she's there for you, along with that teacher you like! Go get 'em!!! I have to figure, eventually, they'll stop dishing out the BS and start giving our kids what they need. What did the neuro say when you told her that??? Is she agreeable to going? Good for you! I think with all your troubles, it's just the best idea ever!!!! ~Lesley Oh she is very agreeable to going. She even said that his good teacher he had should train the current teachers on how to communicate with him. Now she does see patients on Thursday's so that is out. And she did tell me that to have her at the meeting, when she would be out of town. You know I am trying to recall how I invited her to the first IEP meeting she went to for my kids. She goes to both, by the way, Jeffrey and Gabe's IEP meetings. I don't know if she suggested or I asked, funny, you think I would remember that one, lol. Now the phone thing would be a good if they had reliable phone service. Now I know it is beginning to look like I am complaining about the schools here nonstop, lol. But last school year I can recall several conversations I had not only with Jeffrey's school but also Gabe's school where the line would go dead on their end. And the district did know about the phone issues but never fixed them. Keep in mind Jeffrey and Gabe go to two different schools. And I think here you can also get a better read on what the body language is of the school personnel and the district personnel if everyone is at the meeting in person. Tammy
I was thinking phone thing as a back up position if she were out of town or had a scheduling conflict for the the IEP. I just love the dr. being there one way or another and I'm not giving it up!! It's too good. The situation is just too dire--they've got hear that. The twits. p- Wow, what a wonderful doctor!!!! That's awesome. In your situation, I honestly don't know what I would do...would it be OK to send him based on last years IEP? or better to hold him out based on all the inconsistencies they've created? I absolutely wouldn't hold one until she could be there...that's for sure. But I know how one day could cause irreversable damage, so is it risky to send him before having everything ironed out? I think in many cases it is. Yikes...I just don't know. By the way...our special ed administrator once told me "if you could just get him to school he might learn something". Well, when my son is sick, he throws up every 10 minutes for about 4-5 days on end...he can't talk, walk, go to the bathroom even...they call it a "conscious coma"...I suggested to her that she come over next time he's sick and hold his head up for him while he throws up day after day 'cuz he's too weak to do it himself and might suffocate, and see what kind of shape he is in to "go to school"....it's the least of my worries when he is sick. I then had the doctor call her directly to tell her how debilitating it is and how unfortunate that the school is taking it so lightly. Now, after my IEP, I have a training session set up to train the teachers and nurse on what to do if he starts an episode and how to spot it; he's allowed snacks every two hours during class; I have tutoring after excessive absences; they're implementing a "Emergency Red Card" plan that he just needs to lift the card when he needs to book to the nurse's office (again, he can't talk once it starts); AND they will no longer be reporting us to the truancy office. Last year's IEP doesn't have the social stories or the weighted blanket in it. It has the transportation things in it though. The IEP is missing the part where if he is totally out of control they take him to Fairview Hospital. Also he has that thing going on where he thinks his summer school teacher chose where the summer school was held at. I don't know if it was something she said to him or not. Now she did tell him that the school where his summer school was at is the same size as where his school year school is. Well she didn't take into consideration that if you tell Jeffrey the sky is green then the sky is green, for example. So he said very adamently "she lied to me!!!" I asked him about it and he said that she said they were the same size. He actually said "but they're not. There is no lower level like ________ has !!!!". And this same teacher will be at his school again. Jeffrey will be in the 7th grade. He was held back a year. Also it is time for his booster shots so you have that issue to contend with. I told the neuro I didn't want to do it right now with everything else that is going on with him. And she suggested telling the school that I will get it done but not right now. Her husband worked in special education within the school district for years. So I think both of them are a good source. Plus I am beginning to think that maybe they gave into his obsession too easily. The landmark obsession that is. I know the good teacher had it where he had to have good behaviour to be able to see them or even look at his maps in free time. It could be the current school lets him see them, which he can from that school, anytime he wanted to. So it is almost like you are walking in a mine field here. You never know what has occurred because , once again , lack of communication between me and the school, and what will set Jeffrey off. Now the teachers do report to work next week so that should be an interesting week. Tammy See, isn't it amazing all the things you have to consider here??? Nobody else would consider what it does to make comparisons that would go unnoticed by others...but I do understand what you're saying and how literal he takes things. If you don't have the Fairview info in there, maybe you do want to consider holding off sending him until you see how his new meds are doing?? How is he doing?? Doesn't it normally take a few weeks to know for sure? (sorry, I don't have experience with this...) Well, again...keep us updated...are you going to the school next week to meet the teachers? Will Jeffrey go with you? (my Josh (nt) is in 7th this year too.) Yes it takes three weeks to get the full effect of the drug. The neuro wants to see him back to monitor his blood content and his overall behaviour. So until he is fully under the effect of the new drugs I don't see how the school could handle him. And transportation is a whole new or rather different issue. Don't even know at this point if they do any training at all. And I will call next week. Taking Jeffrey with me to the meeting, well they don't like discussing his "behaviour issues" in front of him because it might be too negative for him to hear. So we will see. Tammy Hi Tammy, My name is Mandy and I am very new to this forum. I have a two year old who was just diagnosed with "severe to moderate" autism,we're in the process of going through all this testing and therapy to find out more, but after the last cpl of days I came on here and saw the title "Jeffrey's Major Meltdown" so I decided to start reading and my heart sank because not at the way you handled things because I commend you on that but I pictured my daughter, she's only two and we really don't have anything to go on as far as what she's able to do not able to do because she hasn't been in any consistent therapy, but yesterday I was at my aunts house and she went into full meltdown and throwing herself on the floor screaming and kicking, wanting me to pick her up but once I did she would kick and hit me, this went on for about 20 minutes straught and there was nothing I could do for her because I haven't really been directed as to how I should handle her when she gets this way so I was just in tears at my aunts house because I couldn't do anything with her and my aunt is telling me that she doesn't want me to not come to her house just because she's doing this but what am I suppose to do? And it's not that I really care that my family would be looking at me like,"Do something about your kid." because they never would but like when we go to restaurants or out anywhere I take the attitude that I don't want anyone to have to deal with her screaming and her meltdown. I guess because I don't have that much to go on right now and I am also wondering when your son was diagnosed and how you dealt with his meltdowns. I have been in tears for the past two days just trying to figure out what to do and going over the day seeing what could have been done differently. Any help or suggestions would help from not just from Tammy but anyone's input would help, so any responses or you can shoot me an e-mail at zonata@myway.com Thanks, Mandy Mandy thanks for the reply and I will either pm that or email it to you. It is a very long and confusing story, with alot of twist and turns in it. As far as the meltdowns some of them disappear when they do learn some form of communication. I know with both of mine I could understand what they were saying before anyone else could. Whether it is pecs, sign language, or just babbling, alot of these kids can learn to communicate in one way or another. A suggestion would be to try the bear hug type approach the next time she has a meltdown. You basically sit behind them, put your arms around their chest to keep their arms down to their side. Rock them gently back and forth and whisper in their ear. You could whisper anything in their ear, maybe a story they like, or a song they like. And see if this helps. I know we have used this approach with Jeffrey. This does sound like a broken record but it is repetition in training them what behaviour is good behaviour and which ones are bad behaviour. And unfortunately you do have to take it one day at a time. Just hang in there and know when you have a really bad day you have this board to vent on and you can always pm me or one of us on this board. I just really wish I had something like this when my kids were that age but that was years ago, lol. Tammy Thanks Tammy, anytime you have time to shoot me an e-mail about your story would be great and any info you have to offer would help out tremendously. Thanks, Mandy oh Tammy i feel for you i really do you are obviously doing a wonderful job with your boys and are obviously very clued into there needs you give me a lot of hope,thankyou for sharing your story hugs to you all
Dee Jeffrey has a appointment with the Psychriatrist on October 3rd. Nope, Fairview never called me back. And PACER is not being very helpful. Neither is the local Autism Chapter here. But I complained about them to the National Chapter. The only one that has been helpful is his old, good teacher. He told me there are at least three violations of his IEP, which I will update under the educational forum and provide a link to it in this thread. Why is it when you really need the help, it is like pulling teeth to get that help? Tammy http://www.autism-pdd.net/forum/forum_posts.asp?TID=2084& ;PN=1&TPN=1
Jeffrey has been on his new meds for about 10 days now. I can tell you at this point I don't like them. Last night he went to go pick up his juice and he acted scared of it. He asked me to pick it up. And there was nothing blocking his path to go pick the glass up. I have noticed he is more clumsy. No big increase in appetite. Today it is constant stimming. And he is not listening either. I have to tell him five times to do something. I hope some of this goes away. And if it doesn't I don't want him on these meds very long. The good news is today to self direct or self calm himself he did print out some pictures on some landmarks all on his own. He hasn't done that in over a year. It seems like the new meds have no effect on his obsessions. All it seems to be doing is making him less aggressive. Oh yeah and more impatient. Tammy I'm so sorry to hear about your day today. I agree with eileen here. He doesn't mean those things he says. Please keep us updated on him and let us know if he's comming home or staying. Let us know what the doctors say too. Hang in there and remember....your a great mom. Karrie Tammy, I just wanted to send I hope that Jeffrey is back on track soon. Please keep us updated. Nelle Tammy,I am so sorry to hear what a horrible day you and Jeffrey had. I hope things get better. Kellie I'm so sorry you're having such a horrible day Tammy...I wish I could offer you some source of comfort. I find you to be quite a remarkable woman with all that you do for your kids...you really are an amazing mother, and like the others said, I'm sure he doesn't mean it, not that it makes how it affects you any better. Again I'm terribly sorry that you and Jeffrey both have had it so rough today. I pray for some good news from you soon. How is Gabe doing through all this? Hugs from a stranger Tammy! ~Lesley Hey Tammy You sure have had more than your share recently. I'm really sorry to hear about all of this today and what you are going through, its hard. I know it especially hurts when your child says mean and spiteful hateful words to you.. I have heard them myself from my child and it is painful whether they mean it or not. Hopefully Jeffrey's doctors will be able to sort all of this out and adjust his medications.... maybe the depakote sprinkles are no longer workign for him and its time to try something new... maybe a mood stabilizer like neurotin or risperdal.... You have a good neuro so hopefully it won't take long to get things back on track . Has there been an (even small) changes? Did this start around the same time he stopped the ESY program? AS far as meltdowns over his landmarks..... I know you try many things so only asking... since he likes maps maybe showing him and preparing him ahead of time of what route you are taking to where. I have heard about how many of our kids need the predictability to follow the same route so they know where they are and what to expect... maybe this goes partly with his landmark obsessions.... Is there any possibility of scheduling particular trips on a regular basis to see his landmark? Recently I saw a leaflet in a waiting room it was about 911..... asks How is your child doing? Fears of terrorism.... War on television.... Family members or neighbors deployed on the front lines..... Its all folded up with Emotional and psyciological reactions to stress and anxiety seperated by age groups 1-6, 6-11, and 12-18 Inside it lists what you can do to reassure your child and talks about when you should seek help for your child or yourself. It also says How are you doing? lists signs that adults need stress management and ways to ease stress... I planned to type it out for you as when I saw it I thought about Jeffrey even though this is geared toward the general public and not autistic kids..... It does list some online resources if they are any help.... Federal Emergency Management Agency For Kids www.fema.gov/kids Disaster Help For Parents and Children http://childadvocate.net/disaster.htm Helping Children After A Disaster www.aacap.org/publications/factsfam/disaster.htm Helping Children and Adolescents Cope with Violence and Disasters www.nimh.nih.gov/publicat/violence.cfm Coping in Unsettling Times www.nasponline.org/crisisresources/ American Red Cross www.redcross.org Alcohol and Trauma www.niaaa.nih.gov/publications/aa03.htm Maybe the Ohio ones below can connect you to other states? Ohio Association of County Behavioral Health Authorities www.oacbha.org/All_Hazards_Resources.htm Ohio Department of Alcohol and Drug Addiction Services www.odadas.state.oh.us Ohio Department of Mental Health www.mh.state.oh.us Tammy Please keep us posted how things are going and know we are here to listen too. Hang in there! I've been thinking about you since your post--I had so many questions so I went back and read some of your threads so I wouldn't have to ask a bunch of stuff that you've probably already shared. Everyone has said it and it's true--you are a great mom. You stand up with pride for your kids. You're not taking the bs from the schools (so, so frustrating, upsetting and unfair!!) and dealing with judgemental and unkind neighbors--all while making those 24/7 decisions and interventions that we all do for our kids. And then there are these escalations!! Frightening and hurtful but you're handling it. I've read your posts--you're doing a helluva a job and you do it with humor--you're strong and you've gotta be tired!! You are simply amazing and much loved by your boys. pat Ohhh goodness Tammy.... I know I haven't been around much hun, but I do come on and read.... I'm SOOOOOO sorry about what is going on with Jeffery. I know you have got to be tired and worn out and hurting and all the things... But I also know You are strong and You are a fighter.... things will get better and I'm praying for you. Tammy.... I was waiting in chat in case you came in and kept thinking about Jeffrey and the landmarks and his coping skills since he was shown the 911 tradgety... here are some links I found... maybe something will help Helping Children Cope with Disaster Coping With Disaster: Suggestions for Helping Children With Cognitive Disabilities http://www.acf.dhhs.gov/programs/add/Sept11/addcoping.html Coping with Crisis--Helping Children With Special Needs http://www.nasponline.org/NEAT/specpop_general.html Helping Kids Cope with Tragedies http://pediatrics.about.com/library/weekly/aa020103a.htm Tami, How strong you are, and how strong you need to be. I hope you have a support system, and someone to give you a big hug. Of course Jeffrey didn't mean what he said, and you know it in your heart. He was out of control, and couldn't help himself, so he lashed out at the one who cares the most, and the only person he knows who will love him despite everything. This happens with NT kids as well. I truly admire your strength. My daughter, who I think is a wonderful Mom almost had a nervous breakdown on the phone with me last Friday, as my GS had a major meltdown(which is very rare for him) at his neurofeedback appointment last week. He has adanced, so they now are attempting to put an electrode cap on his head, and he will have no part of it. You are truly supermom, but please remember to take care of yourself as well. (((((((((HUGS))))))) Bev Maybe talking to Jeffrey about his landmarks? Saying to him simply you know how much he likes to see his landmarks..... and then asking him to complete the sentence the 3 things that I like most about my landmarks are; _________, _________, ___________ If I can see my landmarks it makes me feel_______________. If I don't get to see my landmarks I feel _________. And see if you can't figure out what this whole things is and maybe find a solution to his obsession which is obviously causing him great stress..... I wonder too if he is picking up on the business lady and her BS and maybe he is worrying something terrible will happen to you. Poor Kid! QUESTION: With Gabe enjoying doing things for effect and doing well now.... is it possible he is saying or soing something to Jeffrey you aren't aware of? Tammy, After reading all these responses what can I say? But, I am awed by you. Your unique situation and the way you have come through. You are inspiring. I thought Anna's meltdowns were bad. I was foolish, I had forgotten that others struggle w/this and worse. Thanks for reminding me that WE are all in this together and somehow will get through to another day. Mary Where is Chat? [QUOTE=MsSteelersFan] Tammy.... I was waiting in chat in case you came in Children who "regress" actually signal when their current therapy is no longer effective and it's time to switch things up. Meltdowns for seeing landmarks...what I would've done is said this, "We can either stay at the beach all night or we can drive home and not see your landmarks...you choose." Then, all the way home I'd be singing and laughing and saying, "we're not seeing your landmarks, we're not seeing your landmarks...la la la la la lalaaa" TOLERANCE TRAINING! Then, for the next week, I'd drive the same route every single day and say the exact same thing. He'll think YOU are the one that doesn't have a grip and he'll realize that he has no choice but to just give up on the obsession. Good luck! Hopefully the behaviorist doctor gave you similiar advice or some good suggestions. Tolerance training...definitely something to incorporate. :) melanie In addition - the whole point of going to the beach is to get from the house to the beach... if you are appeasing his obsessions, you are actually handicapping him. What should happen is that you give him a "normal" replacement behavior. The whole purpose is that we make our children more functional in society. Give him a map and a compass. Show him there are a million different routes to go and a lot of different directions. He should realize the only point of leaving the house is to get to point B and not to go by his landmarks. When he's 25 and obsessing about landmarks like that could aid in him being institutionalized - figuring out different routes he can take will be a little more productive and less odd. Anytime you find yourself doing odd behaviors because of his disorder means that something needs to be changed. never appease his handicap - it will only hurt him and yourself in the long run. Make sure you give him a replacement behavior that is acceptable though. :) Melanie [QUOTE=WonderGrl1000] Meltdowns for seeing landmarks...what I would've done is said this,"We can either stay at the beach all night or we can drive home and not see your landmarks...you choose." Then, all the way home I'd be singing and laughing and saying, "we're not seeing your landmarks, we're not seeing your landmarks...la la la la la lalaaa" TOLERANCE TRAINING! Then, for the next week, I'd drive the same route every single day and say the exact same thing. He'll think YOU are the one that doesn't have a grip and he'll realize that he has no choice but to just give up on the obsession. Good luck! Hopefully the behaviorist doctor gave you similiar advice or some good suggestions. Tolerance training...definitely something to incorporate. :) melanie [/QUOTE] Melanie I can't believe you would suggest such a thing! Maybe your daughter is extremely high functioning or something (and you can do as you wish with her of course ) but to be honest here I am SHOCKED over your response! First of all singing and laughing and saying "we're not seeing your landmarks, we're not seeing your landmarks...la la la la la lalaaa" is CALLED TEASING NOT TOLERANCE TRAINING!" And you think HE will think SHE doesn't have a grip when she teases him like this everyday? I can tell you the MAJOR MELTDOWN this would cause most kids! Especially those with COMPREHENSION PROBLEMS? Im stopping here.... before I say too much........ [QUOTE=WonderGrl1000]Children who "regress" actually signal when their current therapy is no longer effective and it's time to switch things up. Meltdowns for seeing landmarks...what I would've done is said this, "We can either stay at the beach all night or we can drive home and not see your landmarks...you choose." Then, all the way home I'd be singing and laughing and saying, "we're not seeing your landmarks, we're not seeing your landmarks...la la la la la lalaaa" TOLERANCE TRAINING! Then, for the next week, I'd drive the same route every single day and say the exact same thing. He'll think YOU are the one that doesn't have a grip and he'll realize that he has no choice but to just give up on the obsession. Good luck! Hopefully the behaviorist doctor gave you similiar advice or some good suggestions. Tolerance training...definitely something to incorporate. :) melanie [/QUOTE] I want to see your references. What training have you had dealing with kids on the spectrum, especially kids with obsessions. What degrees do you have? And for your d Tammy Well, my information came from my spouse who is a behaviorist and specialist with children on the spectrum. I'd be happy to email you her Vitae - it's very impressive and she's one of the best ones in NC. I was just offering suggestions that most people pay for. None of the children she works with have severe behavior problems. She's taken the most low functioning children and mainstreamed them. She's tough - but I'll tell you what - it works. You can't do the "teasing" for ONE day, it will take a few tries and redirection. Tolerance training is an important aspect for any child on the spectrum regardless. Either you teach them tolerance or they get worse and end up in the institution. It's not my choice, it's yours. Sorry - let me know if you want me to email any references...I certainly have plenty. I was just trying to help. You could either have *hugs* from everyone and still have bad behaviors or you can actually take something PROACTIVE and change it. All the best, Melanie P.S. I would love for you to send your child to my house. I can guarantee he would go back behaving a lot differently. It's NOT bad parenting that you have, please don't get me wrong...I did a lot of things I shouldn't have - I was definitely well intended...just not educated in what I should be doing to get the best results. I'm sorry if I offended you. [QUOTE=WonderGrl1000]In addition - the whole point of going to the beach is to get from the house to the beach... if you are appeasing his obsessions, you are actually handicapping him. What should happen is that you give him a "normal" replacement behavior. The whole purpose is that we make our children more functional in society. Give him a map and a compass. Show him there are a million different routes to go and a lot of different directions. He should realize the only point of leaving the house is to get to point B and not to go by his landmarks. When he's 25 and obsessing about landmarks like that could aid in him being institutionalized - figuring out different routes he can take will be a little more productive and less odd. Anytime you find yourself doing odd behaviors because of his disorder means that something needs to be changed. never appease his handicap - it will only hurt him and yourself in the long run. Make sure you give him a replacement behavior that is acceptable though. :) Melanie [/QUOTE] So what you are really saying is don't leave the house. Once again I want to see your references. Because I can tell already that you have no clue whatsoever on dealing with obsessive like disorders with kids on the spectrum. You take away one obsession and they will obsess about something else. And his neuro said not to tease him period. I really should show them your post. I bet they would get a big laugh out of it. Tell me again how am I appeasing him?????????? I go outside, walk to the curb, look to my left, I see the Lake Street Bridge that connects St. Paul to Minneapolis, which is one of his landmarks. It goes over the Mississippi River, which is another one of his landmarks. I look to my right and what do I see????? I see the Light Rail, which is another one of his landmarks. If I go five blocks to my right I can see the Metrodome, Downtown Minneapolis, and the University of Minnesota, the KSTP signal tower. So once again you expect me to stay inside forever and him too???????? The map thing is laughable and I mean laughable. He has had an obsessions with maps, that is obsession number 3 here if you lost count, since he was 3 years old. He can look on a map and tell you how to get somewhere. Last night after he got home he got his map out and told what route we should had taken and that we didn't take the right route. After he was kicked out of summer school I asked him to show me what route his bus took and he showed me. As far as him being institutionalized, you know nothing. And I mean NOTHING!!!!! First of all in this state to be institutionalized you have to be very severe. He is no where severe. But then again you are probably one of these people that would had agreed with him seeing 9/11 live on tv as it unfolded because it was a "historic event". So once again I should cut myself off from the outside world to not appease him. And I have swamp land in Florida I would love to sell to you too. Tammy Also, I do want to clarify, it's not teasing... it's more like, "yeah, we're not seeing the landmarks, celebrate, celebrate, dance to the muuusic" you know...get him in on it - it's not making fun of him, it's getting excited you're doing something different and pretending it doesn't bother you that it's bothering him. I know it's hard to hear the voice inflections over the computer - but it's NOT making fun of him. It's just over-verbalizing what is going on. Yeah, expect meltdowns initially in tolerance training - they do go away within 2 weeks IF you are consistent...but what are you going to do when he's 25 and has to see landmarks 8 times a day? Doesn't that seem silly to you? Why not get it over with, teach him a new behavior - one that is more acceptable in society and make him functional??? What's going to happen when he can overpower you - he won't be a little 13 year old boy forever. Those are things to think about-which I'm sure you have. Teach him while he's younger and you can... Why does that make you upset? I do understand - I just know that behavior therapy works. It's not a new concept- not even for the lowest of functioning autistic children w/ 800 different diagnoses on top of it. Melanie [QUOTE=WonderGrl1000]Well, my information came from my spouse who is a behaviorist and specialist with children on the spectrum. I'd be happy to email you her Vitae - it's very impressive and she's one of the best ones in NC. I was just offering suggestions that most people pay for. None of the children she works with have severe behavior problems. She's taken the most low functioning children and mainstreamed them. She's tough - but I'll tell you what - it works. You can't do the "teasing" for ONE day, it will take a few tries and redirection. Tolerance training is an important aspect for any child on the spectrum regardless. Either you teach them tolerance or they get worse and end up in the institution. It's not my choice, it's yours. Sorry - let me know if you want me to email any references...I certainly have plenty. I was just trying to help. You could either have *hugs* from everyone and still have bad behaviors or you can actually take something PROACTIVE and change it. All the best, Melanie P.S. I would love for you to send your child to my house. I can guarantee he would go back behaving a lot differently. It's NOT bad parenting that you have, please don't get me wrong...I did a lot of things I shouldn't have - I was definitely well intended...just not educated in what I should be doing to get the best results. I'm sorry if I offended you. [/QUOTE] So basically you have no clue what you are talking about. And I can guarantee you this, after spending 24 hours with him obsessing you will be going to the nearest ER and begging them to medicate you. point is you guys left the beach because he was upset. you accomodated his behavior. if this doesn't bother you, why did you bother to post about it. I was wrong, you are right, I will give support and not offer suggestions. and you are absolutely right about another issue, I am not competant in this area - I'm newer to it myself. I was just reading your post outloud to my spouse and it's what she said. You are right, you definitely sound like you have it under control. My apologies. Again, I'm sorry I made you upset, that wasn't my intention. Melanie Actually no we didn't. Gabe started to not feel good. Shows you how much you know. And the meltdown didn't start until after we got home. Once again you know nothing.I'm sorry, I thought I read he had 4 or 5 meltdowns at the beach and this was AFTER he kicked you once you got there. You are right, I don't know anything. :) Keep up the good work. Melanie Heres the brochure I mentioned in an earlier post....... keep in mind this is geared at the general public and not special needs kids, but maybe something will help......
How is your child doing? Fears of terrorism….. War on television…… Family members or neighbors deployed to the front lines….. Helping your child cope with terrorism and war. Whether or not they feel directly affected by the trials of our post – 9/11 world, many children experience some anxiety about their family’s safety, and may exhibit a wide range of emotional and physiological reactions. Parents and other caring adults are in the best position to recognize the changes listed on the following pages. Emotional and physiological reactions to stress and anxiety YOUNG CHILDREN (1-6 years) Helplessness and passivity; lack of usual responsiveness Generalized fear
Heightened arousal and confusion
Cognitive confusion
Difficulty talking about and identifying feelings
Nightmares and other sleep disturbances
Separation fears and clinging to caregivers
Regressive symptoms such as bedwetting, loss of acquired speech and motor skills
Anxieties about death
Somatic symptoms (stomach aches, headaches)
Startle response to loud or unusual noises
Fussiness, uncharacteristic crying and neediness
“Freezing” (sudden immobility of body) SCHOOL –AGE CHILDREN (6-11 years) Nightmares and other sleep disturbances
Concerns about safety and preoccupation with danger
Aggressive behavior and angry outbursts
Fear of feelings and trauma reactions
Close attention to parents’ anxieties
School avoidance
Worry and concern for others
Changes in behavior, mood and personality
Somatic symptoms such as body aches and pains
Obvious anxiety and fearfulness
Withdrawal
Regression (behaving like a younger child)
Separation anxiety
Loss of interest in activities
Unclear understanding of death and the causes of “bad events”
Loss of ability to concentrate at school, with lowering of performance PRE-ADOLESCENTS AND ADOLESCENTS (12-18 years) Self-consciousness
Life-threatening reenactment
Rebellion at home or school
Abrupt shift in relationships
Depression and social withdrawal
Decline in school performance
Trauma-driven acting out, such as with sexual activity and reckless risk taking
Excessive activity and involvement of others or retreat from others in order to manage inner turmoil
Accident proneness
Wish for revenge and action-oriented responses to trauma
Sleep and eating disturbances, including nightmares
Increased self-focusing and withdrawal What can you do to reassure your child? Talking about terrorism and war, in a sensitive manner, will not increase your child’s fear. Age-appropriate discussion can instead reassure children about their safety. Parents can help their children by following these tips: Create an environment where your child feels safe enough to ask questions, express feelings, or just be by themselves. Do not criticize your child’s feelings or anxieties.
Provide children with reassurance and extra emotional support.
Be honest with children. Provide accurate information, but make sure it is appropriate to their developmental level. A discussion should be limited to depth, pace and range that the child chooses.
Help children make sense of what they hear from other children and adults. Ask what they have heard and answer questions they have.
Tell children what the state and federal government, police, firefighters, hospitals and others are doing to promote and ensure safety.
Serve as a protective shield against the images of traumatic events, particularly those on television. Children should not be over-exposed to the sights and sounds of traumatic events or violent acts. When should you seek help for your child or yourself? Most children bounce back quickly with social support and the aid of their families, but it is important to be aware of the reactions and warning signs listed in this brochure. If these warning signs are serious or if they persist, you should consider seeking help from a counselor or other behavioral health professional. Contact your local behavioral health board to find services in your area. Sources: National center for Post-Traumatic Stress Disorder Terrorist Attacks and Children fact sheet and the United States Department of Health and Human Services’ Substance Abuse and Mental Health Services Administration Coping with Traumatic Events and After a Disaster: Self-Care Tips for Dealing with Stress fact sheets. On-line Resources Federal Emergency Management Agency for Kids www.fema.gov/kids Disaster Help for Parents and Children http://childadvocate.net/disaster.htm Helping Children after a Disaster www.aacap.org/publications/factsfam/disaster.htm Helping Children and Adolescents Cope with Violence and Disasters www.nimh.nih.gov/publicat/violence.cfm Coping in Unsettling Times www.nasponline.org/crisisresources/ American Red Cross www.redcross.org Alcohol and Trauma www.niaaa.nih.gov/publications/aa03.htm Ohio Association of County Behavioral Health Authorities www.oacbha.org/All_Hazards_Resources.htm Ohio Department of Alcohol and Drug Addiction Services www.odadas.state.oh.us Ohio Department of Mental Health www.mh.state.oh.us How are you doing? Signs that adults need stress management assistance include: Difficulty communicating thoughts Difficulty sleeping Easily frustrated Increased use of drugs/alcohol Limited attention span Reluctance to leave home Depression, sadness Feelings of hopelessness Mood Swings Crying easily Fear of crowds, strangers, or being alone Ways to ease stress: Talk with someone about your feelings-anger, sorrow, and other emotions, even though it may be difficult. Take steps to promote your own physical and emotional healing by staying active in your daily life patterns or by adjusting them. Maintain a normal household and daily routine, limiting demanding responsibilities and situations for yourself and your family. Spend time with family and friends.
Use existing support groups of family, friends and church. State of Bob Taft, Governor Department of Alcohol and Drug Addiction Services Carolyn Givens, Interim Director Department of Mental Health Michael F. Hogan, Ph.D., Director This brochure was developed collaboratively and reviewed by the ODMH/ODADAS All Hazards Leadership Advisory Committee. Health Resources and Services Administration (HRSA) Cooperative Agreement Grant Number U3RmC00055-02-03 and 1U3RMC038-01-00 |
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. I know one night on the news they were talking about his Light Rail. All these landmarks are his landmarks. The city and country just doesn't know that yet, lol. They said on the news that it was shutdown for four hours because of accident. He didn't hear the four hours. He thought they shut it down for good. He asked me if they shut it down for good. I told him no, just for the night. Well you could tell by the look on his face he didn't believe you so I let him listen to the story. And it said it would be operating again in four hours. The relief on his face was amazing!!!
. Could Jeffrey have gotton bit by something at camp?
's. You are doing a great job with both your boys and it sounds like you did a great job of keeping your cool. You are an insperation to all the single mom's here.
n information a bus aide did tease him on the bus one day over food, which is another obsession of his. And he had a major meltdown on the bus!!!! But you know what, since you think you are such a big expert the next time he has a meltdown I will make sure to send him to your house and you can tease him for hours on end. Even though you never, ever tease an autistic kid because they can't tolerate it.