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Registered: 03-26-2003
Hello
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Wed, 07-16-2003 - 1:58pm
Warning this may get very long =). My ds is 7 years old. He was born Dec 30th, 1995. I was induced at 37 weeks because my blood pressure started suddenly going up and I had really high bp with my first (he is my 2nd). I ended up having to have a c/s because my bp climbed to high. The cord was cut before he was delivered because it was around his neck tight and he was blue. Other then that he was perfectly healthy till he was 3 weeks old. He spent 3 days in the hospital with rsv. We struggled with nursing and had the hang up if till he was 4 months old when he said nope to mommy and just wanted a bottle. He slept wonderfully till he was 10 months old as long as he was in his own bed. He woud get sleepy on me and want to be moved to his bed to fall asleep. At 10 months that all changed and I ended up bring him into my bed since it took hours to get him to stay asleep in his crib. Things went ok till he was about 2 in half.

I was pregnant with my 3rd baby and ds started running off in stores. It took me 2 times to realize I was in serous trouble and he had to be in a cart or stroller. But he had to buckled in or he would go to jump out and then would scream like I ws killing him the entire time in the store. The scariest time was when my 3rd baby was 2 months old and we went to have pictures taken. He was three and throwing a fit about it. I walked slightly ahead of him and he took off into the store. I had just gone to the counter to tell a clerk when he ran back up to me. After that I brought him a harness. I used it no matter were we went till he out grew it, of course he acted like it was killing him. I eventully had to stop taking him any were when I did not have another adult with me because I had a 50% chance something would set himoff and he would take off. If we went any were new he flipped out and had a melt down. He would run around like crazy and kick and scream like I was killing him when I held him down. I would have strangers (usully older gentlemen) tell him he needed to behave for mommy. That was always embrassing.

Up till about a year ago he went though fazes. Were he would work up to a melt down over a week or so. He would have one huge melt down then be ok for a month more before starting all over again. But for some reason about this time last year that changed. He started having 2 or 3 melt downs during his bad faze and less time in between. The only place he didnt act up was school (or if we went out to eat but he knew I would leave anywere but drs offices). But he was getting fustrated there with work and shutting down. He would refuse to do it. Sometimes he woud cry other times he would just put his head down. A few times I was called to pick him up over headaches. One had him curled up in a ball in the corner of the room. I knew at this point that something was wrong. But I couldn't get his ped to listen to me (before the headaches). When he was going though a bad spell he would be mean to his sisters. I locked him out of the house one day ( we were renting 5 acres with the house in the middle and I knew he wouldnt run to the road and even if he did it wasnt traveled much) because i couldnt control him and was worried what he would do to his sisters (he was 6 then). His dr kept saying it ws sibling rivary. Family was telling me it was my fault that I wasn't punishing him enough or right. I tried everything and nothing worked. I would send him to his room and after he stopped kicking the walls he would lay in his bed and it looked like he was in his own little world! It didnt faze him any longer at that point and he would get mad when I would disturb him to tell him he could come out. Twice he threatened to break the window thou. He has always been on the dramtic side. Usully using hunger as his excape. he would swear when he was melting down that he was starving to death and his heart was beating fast cuz he was hungry. It wouldn't mattter if he had just eaten he was starving. (He had gone though serval test to check out a heart mumor that was inocent just as he started school and was taught how important the heart was.)

I finally had a break though in March or Early April. I took ds and my oldest for a free karata session. It was then I noticed he was getting over whelmed. At least the reason for that melt down was he was over whelmed. So many new things were thrown at him at once and he couldn't handle it. He ran off from me and out of the building towards a major highway. The next week at school I went for a few hours for field day. They had spent the entire day outside in total caos. His teacher mentioned how well behaved ds had been but some of her others hadn't been. That all changed with my arrival. It was late in the after noon and ds lost it. He was upset that he wasn't standing in line for one of the games and someone took his turn. He took it out on me. First he was just running off. When I ignored that he started trying to push me over and I was holding my youngest (my 4th who is 19 months old now). When that didn't work he started hitting me. I wanted to cry. I couldn't get him under control and no one at the school was helping. I didn't know what to do. My oldest has capd (central auditory processing disorder) and her teacher saw how he was acting and mentioned autism. My first thought was the movie Rain man and I thought no way. But she sent me some info and I thought yeah this sounds like him. From time to time he has complained of noises being to loud that no one else thought was loud.

i was determined that his ped would listen to me and send him out for testing or I would switch peds. I didn't have to. Ds had a melt down waiting to get in to the ped. He had to go potty and thought from there he should go into an exam room. When he couldn't he went outside the door. I ignored him so he ran out by the road (again a busy street) and a nurse saw him and was calling him back (this is what I get for taking my eye off him for a second and not thinking he would go by the road since I wasnt chasing I knew better thou). I held him down but he was screaming to bad and kicking my legs so I let him go. But blocked the door (luckily we were the only ones waiting) so he couldn't get out. He was screaming and rolling around on the ground. I finally asked if it would be possible to put us in a room since that was his problem and they moved us. He stopped instantly. Was like night and day till the dr came in. Some how he got out of the room on the swival rolling chair. I brought him back in but without the chair (that wasn't easy he wieghs 65 pounds and is tall and strong). He wouldn't agree to anything till the chair came in. He was insistant that the chair come in the room. Once the chair was in he calmed down. The ped mentioned autism before I had a chance to. I tought wooo hoo we are getting some were. He is going to see a psycholigist next month to begin testing.

She also gave him a dx of adhd but said they don't do meds till they are sure and he needed testing for that. She was pretty sure about the adhd and the autism thou. She also mentioned bi-polar. I haven't been able to come to terms with the last part and look into it. I will if it comes out he has it but right now I can't. He started acting up again as we left the room and she had heard all about his flight and said we don't normally do this but I am going to put him on something for the adhd. I didnt want to start out with meds but I was worried about him getting hurt or one of his sisters because he let the baby out into the parking lot during his earlier melt down.

He started on Metadate 20 May 3rd and I noticed an instant difference in him. He moved to the sld classroom at school and the teacher noticed a difference too. She had him for a week before he went on the meds thou. She said he wasn't as clingy and would work more. During the summer I have been lax with the med pretty much just giving it to him on days we are going some were. Home can be alittle stressful on days over this and we are going back to daily on Monday. Also want to get him use to it again since school starts eary down here (we are in florida).

The biggest test of the med came on June 22nd. Mil got remarried and ds did very well. A little boy was ringing a bell in his ear and it was bugging him. He asked him nicly to stop and when he didnt ds moved away. HE went and sat as far away as he could and still be were he knew he was allowd to be. He put his head down but was rocking slightly and talking to himself. I rubbed his back and told him how proud I was of him and as soon as the actully wedding took place (It was due any minute) we would sneak outside for some freah air. Beofore the med he would have pushed the boy over and ran off outside (again towards a busy road). He got control of himself and was able to watch the wedding and then we went outside. he was much better outside. We went back in to eat but he didn't want to eat. He did good for another hour or so when he decieded it was time to go home. He kept saying over and over lets go home. He finally sat by the door talking to himself. I had to bribe him to get in a few pictures before we left. I then realized he has never liked having professional pictures taken. Bil was taking pictures and using a professional type of flash (he has his own bussiness). Now I am wondering if the bright light hurts his eyes.

Shortly before this the school's psycholigist (or quack as I refer to her)did her own testing on him to see about getting him help in school. She saw him on a medicated day even thou I was tempted to send him there without it since she ticked me off when I tried explaining ds to her to prepare her for him. She told me she knew her job and had been doing it for 25 years. She kept telling me what a wonderful little boy he was and how smart he was. Well duh I never said he wasn't just that he gets over whelmed and can shut down and refuse to work. I simply wanted her to say hi to him a few times so he knew who she as before she tested him in hopes that would help him. His teacher was even worried about how he would do and went to the quack. He did great thou. She saw no autism and doubts he has any form, she said adha children can have alot of the same signs as autism. She did think he has adhd thou since the med is working. She said it woudn't if he didn't. She thinks his learning problems stem from the adhd and his serve speech problems. She recommands he goes into an LLD (learning laguage defict) program next year were everything revolves around speech or speech is worked into everything. Not sure now which. But it did sound perfect for him. So this means changing schools and hopefully since he had the summer break he will be ok with it but his siter will not be in school with him and I worry that will be hard on him. But she needs self contained sld and his school does not offer that. His iq was 114 verably but she thinks it is actully higher jsut with his speechit is hard for him tog et it all out right but because hubby sees it as being low he doesn't think ds has autism now.

He is currently getting speech and ot at school. His fine motor skills are way behind. The ot therapist isn't sure about autism either but did teach us some things for trying to help him when he gets over whelmed. I am not sure how next year is going to work. Both his current school and the one he should go to have been told the change needs to be before school starts (and the quack actully agrees with me) but I havent heard anything and plan on calling the new school when teachers return August 4th to get things going.

I think I have covered ds. I am not sure what to expect during the testing. I am going to read some of your stories later on. But right now ds is bugging me to get on the computer and my oldest wants to go out in the pool. I will come back later thou I promise.

April


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Registered: 03-26-2003
In reply to: queen_brat
Thu, 07-17-2003 - 1:20am


I remembered something else and figured with the lengh of my other one I would start a new one, lol. Or maybe I just want to talk about what a sweet loving little boy he can be?

He never had stranger anixety as long as I was with him. He would hug perfect strangers. It is hard to think that little hugger has turned into the running monster. I use to worry that he was to sweet and trusting. When I am sad he will come up and rub my back or give me a hug. He brushes my hair from time to time and is very gentle. He still has his very sweet moments and at those times it is hard to picture he can turn like someone flipped a switch and I am not always sure why he flips out.

I also do not beleive he likes how he acts. After the karata session and the fight to get him in the car and then in the hosue and him calming down he came up to me. He came up before I was fully ok thou. I was in tears wondering what I was doing wrong. It was his worse melt down and he hadn't done anything like this with anyone else. I was really starting to think it was me. The fact that he had been over whelmed hadn't hit yet. I just wanted to crawl up in a little ball and not think. I told him I was still upset and needed some time to before we could talk and to go play for alittle bit. He did and when we talked later he said he was sorry. It was also the first time he was able to say what set him off. He said the karata was to hard and he couldn't do it perfect like his sister was. Thing is she wasn't doing it perfect either but didnt see that. She took the praise to mean she was perfect and for her first time she relly was just not the perfect ds saw. Make sense? He was doing good too till there were 2 and 3 steps to do then he lost it. It was to much. I think during our talk is when it hit he was over whelmed. I have been suffering from anixety the last year or so and actully started to understand his feeling of needing to run. I would (ok still do but not as bad or often now its chest pains, lol) feel like running as far as fast as I could (and I never was a runer or enjoyed running) and crying at the same time. I just knew running would do no good. I can see a 7 yr old not being able to fight that feeling. So I started to think it was anixety. Then I wonderd about sensorory over load and now I am not sure of anything. He promised to never run off again. That broke my heart. I really do not think he was just saying it. I really beleive he doesn't want to but can't control it at first. When he was running that day I saw when it went from uncontroble to oh no Im in trouble and he could have stopped. Make sense? I told him I understood the feeling of wanting to run but that solves nothing. I told him I have felt that way 2 but it just makes it worse. I told him when he felt like running off to run to me instead. That I would hold him till the feeling pasted. We have yet to try this out. Well maybe we did at the wedding? He didnt run to me but I helped him though it. I told him I understood he couldn't control the feeling but it was wrong and we had to work on stopping it together. I told him thou he could not make the promise to not run off because right then I felt he couldnt control it and told him so. I told him the promise he could make was to try and control his temper and the running feeling and to run to me. We also discussed how damgerous his running had been not only for him but his sisters that I had to leave in the car alone.

I have been told not to chase him that it makes it worse. But when he is endangering himself by running towards a busy street or even in a parking lot how can I not? He doesn't stop because I don't chase. I have tried that. He keeps it up till he goes to far and knows I will have to get him. I would never forgive myself if I didnt and he got hurt. I wonder if he could betesting me when he does this? Making me prove I still love him and will protect him? It is just he knows if he keeps pushing I have to. Would that mean its controlable thou? Or could it be self conscienly he is testing me? See I dont know. Grrrr. If it is atest wouldn't it be better to prove I do care and will protect him while helping him learn how to deal with it better? His ped agreed that I had to go after him since he goes towards the street. Before that it was the nieghboring bussiness (on the karata day) that is a car wash.


Thanks forreading =). Hopefully I am done now.

April



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Registered: 03-26-2003
In reply to: queen_brat
Thu, 07-17-2003 - 12:03am
Thank you. I just wanted to try and get in everything major about him. When I talked to the school quack I wasn't able to and so she only got half a picture. I dont trust her judgement anyways to be prefectly honest. She could say the sky is blue and I would seek a second opion, lol.

Please over whelm me, lol. I want to get a complete picture. Even if its bi-polar. It really is better to know then not to know. When the teacher mentioned autism it took a few minutes to get her to say it. She started to and stopped and we had a real close relshionship. I know no one can say for sure what he has without seeing him in action and doing tests. But I would love to know what I could be facing and what test will be done. I'd love to know what questions to ask. I am going to go though and read the baord now that it is quiet in here. And will ask questions as I go along.

My hubby has done no reserch on anything. The iq thing was something he pulled out of his you know what. I tried explaining to him she thought it was higher but he wouldn't listen. I also told him the test could be flawed because of his diffuculty with talking. That not only do I want the private psychoiligist to test it I want it redone a year after we have the results and after he has been worked with to see what it is. Even thou I really do not care what it is. I know he is smart and if it goes up any or not that doesn't change anything. I just don't want hubby to say or it isnt because of the iq.

With b I havent noticed that but that doesn't mean it doesnt happen just I havent picked up on it. I will watch for it thou. The only catch phase I have seen him pick up on from a cartoon is dont hit me I will hit me. Not even sure what cartoon that is from. But of course that is the first that pops in my mind there could be more just I havent caught them and do not generly pay attention to the cartoons. I happen to catch this one because I asked about it. He does have the numbers memorized for one of the calling plans that advertises. One of the ones you dail like 101022o 1 then the number. I cant get it right but he knows it perfectly. Dont even remember how it came up one day but it did and he corrected me when I did it wrong (or who ever did it wrong). He reads words off the tv that surpraise me at times and can read when he wants to. Not as well as I am sure he shouldbe but alot better then he lets on. But with his speech I would think that it would make it diffucult for him to read out loud since it sounds so different then he thinks it should. He can be really hard to understand.

He is diffently Mr Hyde with me. He can be with daddy too but it is worse with me. I always felt it was because he felt safe with me. That was why I was worried when I found out he had run off fromthe teacher once at school. I thought oh no he is feeling safe enough at school to run off and I wasn't there. It was only once and I amnot sure when I didnt find out about it till towards the end of the year. I hate teachers sometimes. I want to knwo things liek this and it is very important that I do but they do not tell me them. My oldest came home one day saying she got in trouble at lunch. Her teacher said she had a great day. I think dd told me because she didn't feel she should have got in trouble. She poured milk inanother little boys fruit becuase he told her to then lied to who ever asked her aboutit and got caught. She had been punished at school and I was only upset over the lie but this is my good child. She had never done anything like that before and it worried me since it was out of character for her to lie at school. I made sure her teacher understood I was to be told about things like that.

I have been told by hubby that the Mr Hyde is because he can get away with it from me. I was starting to wonder if that is true. But I do not give in if he is doing it becuase he wants something. Usully it was if we went to the drs office, one he hadn't been to before. He knew I wouldn't leave and would act up. Spanking him does no good. Holding him gets him screaming like I am killing him. If we were at a store and he acted up I got what I went in for and left. I figured if I left empty handed he won. His fits were either he wanted something or didnt want to be there. So at least I got what I went in for. When we went out to eat he ws a perfect angel. We have always recieved complments on how well behaved they are. But he knows I will get up and leave with him I think. It could also be because daddy is there. Maybe it isnt that he knows he can't get away with it from daddy but doesn't trust daddy to always be there and love him? Knowing I will leave and not wanting to leave food (this truly is a comfort for him on non med days) may actully have nothing to do with it or that daddy wont allow it. I have to think about this some. Hadn't thought of this angle before. If you knew more about hubby you might think this too, lol. Poor child has to deal with that on top of everything else.

I want to thank you so much. First for reading my noval and second for showing me I may have done one thing right in life. I want my children to knwo I love them no matter what and with everything else ds has going on at least he knows that. Now to teach him a better way to let out his feelings and I will be happy. I forgot to mention in my first post in his iep it also says he can go see the behavior specilist as the teacher feels it is needed. His old school had one on campus all day every day. I amnot sure about the new school but I hope so. I will make sure he can still go see himor her at the new chool. But will try and get it to a weekly thing for him since he is set in routine.

Oh I forgot to mention his routine. Going to bed at the same time doesnt work but he knows what cartoon he isn't suppose to go to bed before, lol. He throws a fit if you try and send him to bed before it. He was taking a nose spray for his allergies and he knew he had to take that at bedtime and would not go to bed without doing so. During the school year he is more set with his routines thou for some reason. Probably because I enforce bed time alot more. I know I am alot to blame over the problems during the summer since I am terrible with schudles. I need school to have a good one, lol. His night time pill also became a habit that he wouldn't go to sleep without taking it. Some nights I wouldn't want to give it to him because he was to late but he would insist and I would give him half. He started it after the metadate to help him sleep since the othe helped to keep him awake. He reminded me about his morning pill every morning because it became routine till we got lax over the summer that is. He can be diffucult to get out the door in the morning. I have tried waking him earlier and everything else I can think of. But if he doesnt want to get ready on time nothing works to get him out the door on time!! But I owuld get him dressed and out the door with no time really to spare and he would throw a fit that he hadn't brushed his teeth.Once I dropped him off at school it was night and day again. He would get out of the car and go to class with no problems. It ws just getting him out the door that was hard. He adored his teachers. They took into account his diffuculties and cut work in half for him and worked with him one on one as much as they could. So not sure why on those days he gave me a hard time. This year if it happens I will talk tot he teacher and see if he was having a test or had the day before or started learning something new. Try and figure out what sets him off for sure. But doesnt make sense if that is the case why he would be ok once he got to school thou. Hoping someone else will have an idea or two.

Another thing with him if I send him to bed and he isn't tired but will go without a fight. Rare that he went without a fight till the metadate. He could lay there for hours and not sleep. He wouldn't get up or have any toys. He would sit there and play with his hands and talk to himself. People would think I was terrible when I said he was up till midnight on a school night. I agree it was terrible but how do you force a person to go to sleep? The night time pill helps some nights but others it doesn't and the nights it doesnt help he is harder to get him up. But if he just lays in his bed till midnight he generlly gets up on his own. It is so hard to know for sure thou how it will work out, and this happened before the metadate about him staying up forever in his bed. He is lucky thou that his old school did not start till 9:35. He didnt have to get up till 8:45 at the latest if he was willing to get up and get dressed right away and eat on the way to school or at school. Eating was big on his list of to do things so I didnt worry he wouldnt some how. I am not sure what time the new school starts. I set bed time at 10 pm on school nights becuase it was the easiest to get him down at and he still gets 10 hours if he goes right to sleep.

Ok Im done for now =). Ty if you got this far.

April


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Registered: 07-11-2003
In reply to: queen_brat
Wed, 07-16-2003 - 6:37pm
Hi, April, welcome to the board! :) And don't worry about letting a post go long. Wait until you read some of my little novella's ;) Who, knows, this may be one of them......(grin)

First of all, I'd like to say that your description of your ds does sound like one of my kids, Jade (dd8). And a lot of what you said IS indicitive of high functioning ASDs. However, it also sounds like it could easily be a common commorbid. By that I mean two disorders coexisting in the same person at the same time. This comorbid set is ADHD and BPD(bi-polar), which very closely resembles PDD/AS. Don't worry, you haven't come to the wrong place, even if it turns out your ds has the comorbid set. However, I also see reason to believe he is autistic. But, at this point I won't overwhelm you with explaining what I see.

I will, however, point out the following:

A) IQ has nothing to do with whether or not a person is on the Spectrum. It is simply a tool that helps us understand WHERE on the Spectrum they might be. For instance, the agerage IQ of someone with HFA is 68, but the average IQ of someone with Aspergers is 124. And the fact of the matter is, more often than not, if the person IS on the Spectrum, their IQ cannot be accurately measured by conventional testing anyway. They speak a whole different language that only *sounds* like English. Or Rather, if you get out your dictionary and refer to it, they are the ones speaking English and WE (non-ASDs) are the one's speaking a different launguage (which I like to call PC'ocol).

Which leads me to B) Take notice of how your ds uses language. This in an excellent way to tell the difference bewteen Autism Spectrum Disorders and ADHD/BPD comorbidity. The Spectrum Child will use language in its most litteral sense....when they they understand what they are saying. It is very common for Aspies to use words or phrazes and only 'think' they know what it means when they really don't. For instance, my xh reported to me that while dd12 was with him she lost something. He asked her if she had looked in her room for it, to which she replied "Yes, I looked in my room vividly." She had obviously learned the meaning of the word 'vivid-ly' in context. It's great that she was trying to do that, but she has a problem with understanding variable contexts. The context in which she had learned the word was when it could easily be exchanged for 'thuroughly' and she wasn't aware that it wasn't interchangable in EVERY situation or context. She does this often, very often.

Also, young Aspies (under age 12) might commonly use catch-phrazes they learned from TV, advertisments, or movies when they are trying to relay a thought. This can be one of the more humorous and light-hearted times in living with an Aspie b/c it makes them seem like a clown or comic, or like they just have a great sense of humor. BUT it can create serious problems for them as time goes on b/c these are 'inside jokes' and they don't realize that not everyone 'gets it'.

These are examples of Pragmatic Speech Disorder, something that is critically required for an Asperger's dx, although, many with AS do not have it to the point of it being 'clinically significant'. I will also point out that older Aspies (teens and adults) will also display this awkard 'humor', but they have normally figured out what the catch-phrazes mean by then (usually the hard way). Also, PSD is not required for ALL ASD dx's.

And that leads me to C) Take note of how your ds interacts with others, both at home and at school. Does he seem to have two different temperments, usually saving the 'Mr. Hyde' for when he's with you? From your post I take it that he does. Here's the good news, that means he feels safer with you than he does when your not around. Aspies, both young and old, usually 'let go' when they are in the presence of someone they feel will protect them and accept them 'no matter what'. They spend so much energy, both mentaly and physicaly, staying 'on gaurd' and trying hard not to do the wrong thing when around 'non-safe' people that they typically act 5 times worse when a 'safe-person' shows up. This is not soley indicitive of the Autistic Spectrum, however. Everyone does it to a certain degree, but people with pervasive and interpersonal disorders do it much more severily. This includes BPD, ADD/HD, NLD, etc.

Sigh, okay, my friends have been waiting patiently for me to take a break, I guess I better get. Read though our threads and see if any of it sounds familiar. Ask any questions you want, no matter what they are. I like to say "The only stupid question is the question never asked".

Again, welcome to the board, I look foward to learning more about you and your family. :)

Peace,

Candes