Need help understanding my DS

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Registered: 03-26-2003
Need help understanding my DS
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Sun, 02-26-2006 - 9:27pm

I have posted here about my DS but it was a year or two back. DS is 10 and was just recently dxed with a form of autism. I am not even sure which one at the moment (was told but she wouldn’t put it in writing but he sees the psychiatrist on Tuesday and I will get more information then) but it was a mild form and to deal with social issues. I am not shocked by this or upset but I don't know how to help him and sometimes I have a hard time believing he can not help himself when he acts up.


This journey started when he was 2 in a half. I was pregnant with my 3rd and he started running away in public. Over the next couple of years we dealt with him having melt downs any time we went some where new (like Drs offices but he never acts out when we go to the dentist even if it is a new one). At home when he is upset or frustrated he lashes out with violence at anyone, or he takes off running, sometimes he throws things while laughing (but the look on his face is a smile but one that seems confused and pained, does that make sense?). At school if he gets frustrated or upset he gets emotional and cries. He can break the rules but no one else can, he gets real upset most days when


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Avatar for googolplex
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Registered: 03-31-2003
Mon, 02-27-2006 - 1:49am

Hi,

Welcome! I don't have much time to write, because I'm supposed to be doing something else! I recognize your name. What you describe sounds like Asperger's Syndrome. The thing that you describe about him smiling that way when in trouble is very much an AS thing. AS kids get very anxious in certain situations when they aren't sure what they are supposed to be doing...and that happens a lot. They each deal with it in different ways, like becoming obsessive about something, getting "stuck" in rules they've made for themselves, or becoming goofy.

I hope you will spend some time hanging out here, to hear what other moms have to say about their kids, and to ask plenty of questions. I'll bet you anything that your DS is not just acting out on purpose. With the toothbrushing thing...for some reason he is stuck on not knowing what to do, and yes, it sometimes seems really weird. My ds does this in certain situations, too. Maybe it would help to make a simple schedule or to-do list with him, and post it someplace where he can see. It might have pictures or words, depending on what works for him, but it would maybe have a picture of a person brushing teeth first, and then the person getting into bed, or whatever he's supposed to do. I understand that a lot of AS kids really benefit from stuff like that.

----- Renee (rbear) if you are reading this...when you posted a link to pictures of your kids, I saw one of a how-to-wash-hair visual aide. I thought that was pretty cool.----

Also, it's very common for AS kids to have "sensory integration" (SI) issues, which would explain why he hates having his hair combs, taking baths, etc. He's experiencing those sensations in a way that is hard for him to cope with.

Anyway, welcome again, and please stick around! You'll get a lot of support here.

Evelyn

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Registered: 12-20-2004
Mon, 02-27-2006 - 2:59am

I just have to say your kids are so gorgeous! So it sounds like ADHD to me. My brother is ADHD/Asperger's. He's also got to out do his 3 sisters, so maybe that's why you see more behavioral problems? I'd also say to keep the Dr's informed and start with counseling (due to his father and the issues???) and just keep on doing what you are doing! You are a super mom! :) My brother sees a psychiatrist now for his meds (he's on clonodine --blood pressure med-- to calm him so he can sleep)

-Melanie
*adopted brother, age 9.5, AS/ADHD

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Registered: 03-26-2003
Mon, 02-27-2006 - 5:14am

Hi there! I remember you from the parenting board eons ago. I am not a regular on this board, but zooming by, I saw your screen name. I also remember back when you were having problems with your son and starting to look for a dx and some help.

My dd does not have a dx and most likely would not "qualify" either. However, she has so many of the issues you describe, just in somewhat milder forms (some of them anyway). I can relate to the meltdowns, the bath problems, the toothbrush or bed/bed or toothbrush, the aggression, the crying etc. It is hard, and as far as I know all the problems you describe are related to the autism and/or sensory problems. I could scream on your behalf over the lack of help you have received so far.

You can not punish the child out of having meltdowns. All you can do is be as calm as possible and as consistent as you can muster. The psychiatrist should be able to help you with approaches and strategies for this. Make clear to her that you need this help. The other thing is to ask for some therapy for the sensory problems (bath, hair etc). It can apparently help a lot. The sensory problems can also cause anxiety, which explains the "panic" that you have observed. You sound like such a good and careful mom in the way that you have observed what he does and figured out what it means so accurately.

I am so sorry to hear about your dh. I hope you are all OK in that regard. I wish you the best and hope that you will finally get some good help with your son.

iVillage Member
Registered: 03-31-2003
Mon, 02-27-2006 - 6:54am

I have to run in a second so I can't say much, but I wanted to recommend reading the book "The Out-of-Sync Child," which talks about Sensory Integration issues. A LOT of what you describe about your DS's behavior sounds like sensory issues to me, in conjunction with ASD stuff. I found the book amazingly helpful in understanding some of my DD's behavior, plus it gives you specific kinds of exercises to do in order to help...

Jennifer :)

Avatar for queen_brat
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Registered: 03-26-2003
Mon, 02-27-2006 - 7:12am

Just wanted to take a 2nd to thank everyone for thier responses. Today is a long day for me so I may not get back till Tuesday to answer any questions asked but I will come back and will stick around. I need to figure out how to understand my DS and how to deal with him and his melt downs and see be around people who understand. Right now there are few in my life that do. We are living at my dad's and he has been great but he thinks it is excues and that makes it harder sometimes to deal with it all.


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Avatar for betz67
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Registered: 03-26-2003
Mon, 02-27-2006 - 9:27am

Hey April!

I wanted to say-- we miss you on the Dec 01 board! and sounds like a HFA or AS, due to the sensory integration issues (bathing/shower, noise, hair brushing, hard hugs, etc) and the meltdowns, rages, running/escaping, problems w/ new situations (or lack there of) and speech issues. I agree that you could learn a lot from The Out of Sync Child. This book was a real insight for me and what sent us after a real Dx and not just letting the school district dictate what they thought Weston's issues were.

We have learned to try to head off issues that will escalate into meltdowns and other issues. We also are doing lots of social stories and schedules for Weston so that we make him able to understand what is going on at our house and help him understand time.

We're having huge issues w/ DD#1 (age 12) thinking that Weston (age 9) gets off easy because we don't hold him to the same tight standards as her-- realistically his standards are just as tight just different-- we work on one or two things at a time for him instead of him having to master all rules at once.

Evelyn mentioned a book "Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills" by Sohn and Grayson. I haven't read this one but it looks good and I'll probably pick this one up soon!

(((HUGS)))

Betsy

Avatar for springolife
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Registered: 05-09-2003
Mon, 02-27-2006 - 9:56am

(((huggs)))I'm sure it's been a rough road, but with research comes understanding and with understanding, patience and strength. I knew that my daughter was different from birth, but her pediatrician said she's just atypical. When I found out about AS two years later he said "She probably does have AS." Then why didn't he mention AS to me to begin with? Because he doesn't know it well enough to diagnose and didn't want to suggest something that may not be there. I have since been diagnosed with AS and SID. She was DX with SID but no AS or PDD-NOS yet.
You asked for help understanding. I haven't read the other responses, but here are mine due to my persoanl experience, since I can identif with everything your son struggles with.

"He can break the rules but no one else can, he gets real upset most days when others break rules. " That's understandable. If he breaks the rules he knows that he's going to do it, there's no surprise to him. However when others break the rules he doesn't know what to expect from them and he feels unstable and has no control over his enviroment/others.

"One minute he can hate me and be threatening to call the cops on me and the next I am the best mommy in the world." The reason for that is difficulty in processing certain emotions in stressful situations. I used to tell my mom I hated her and wanted her to die. Emotions can be experienced in the extreme-such as anger can be interpreted and expressed as hate, interest and beginning affection can be interpretted as love. This is one reason some children are misdiagnosed as bipolar instead of AS.

"If he is having a bad day loud noises hurt and he says he has a head ache. He doesn't understand that some days people just do not want to hug him and will hug them no matter what and get upset that they do not want to be hugged and he is normally rough with the hugs." Stress can make one more sensitive to external stimulai, and people often have physical reactions to stress such as headaches, stomacheaches, panic attacks, ect. Your son seems to be a combination of hypersensitive and hposensitive sensory integration dysfunction. My daughter and I are also like this, only I am touch sensitive and my daughter needs lots of touch like your son does. You might consider getting The Out OF Sync Child and it's companion book. The first explains SID and how it can affect your child, the second gives MANY ideas of things you can do with him to expand his 'sensory diet.' It's helped my daughter alot. I also let her play outside as much as possible, and have a mattress in the living room for her to jump and crash on and one of those climbing/sliding cubes in my dining room instead of a table. LOL

"he other day I told him if he took out the trash he could get ont he computer, when I didn't let him right on he screamed that I was a lair (this type of thing happens all the time with him not understanding time or thinking that he gets to do what I said when he thinks he should)." Again, this is a need to control his enviroment. If he doesn't know exactly when this will hapen then it feel like it's not going to hapen at all. When I tell my daughter that she can do something if she does such and such, I have to also tell her WHEN she can do it. I also set an alarm so she knows that when it goes off it will be time to do it. IT may not be convenient for me, but it certainly gives her more of a sense of stability and makes her feel more secure. IT doesn't always work, but she will usually accept "You can do it after dinner" or "in twenty minutes when the alarm goes beep, ect."

"He is terrified of taking a shower and only will if someone stays in the bathroom with him, will take a bath with no one in there but it is hard to get him to take one (wants to take one once a week so fights the rest of the time). Hates to have his hair combed/brushed. Does not like changes unless it is one he wants for some reason (like when we moved to NY after my H flipped and got physical with me)." Again, all about sensory issues and the last part about needing stability. I only shower once a week. I can't stand showers. It's better since I got a massaging showerhead so I can adjust the spray, but I still don't like it. Baths are better, but takes more time and I don't feel clean sitting in a tub of water....My daughter only bathes once a week too, but I have to bribe her (she eats a marshmello in the tub while I bathe her.) I try to take no more then five minutes.

"Another thing he will do that drives me crazy is I will tell him to go to bed because he is acting up and it is close to bed time. He will say he has to brush his teeth so I will tell him to brush his teeth but then it is I can't because I have to go to bed and we go back and forth till he finally brushes his teeth and goes to bed. I don't know how to handle this when he acts like this and is this typical of a child on the spectrum or is he just pushing my buttons? And how do you know the difference?" This could be one of two things. It could be that he is trying to avoid going to bed (does he not like bedtime?) or his mind is getting stuck like a scratched record. This is known to hapen with spectrum kids, and you just have to think of it as a tic, like with tourettes.

"It does not help that he laughs most the time when he is acting out. But the look on his face most the time makes me think he can't help what he does (I can't really explain the expression but he seems confused and panicked) but how are you sure? " I do this too, but I don't know why. For instance, because I am touch sensitive I hate to be tickled. It is so painful . But I will laugh so hard, and tears will be pouring, and the person will keep tickling me. They don't believe me when I tell them not to tickle me. My daughter was slapping me the other day in the face, and it hurt very badly, but I couldn't punich her because I was laughing. So, she just kep doing because I thought it was funny (or so SHE thought!)

"And how to you handle a melt down when they can't help doing it? Do you punish or not and if you do how? How do you explain to other children that they can't help it so do not get punished the way that child would? Do you get frustrated with your dxed child? And how do you handle it when you do?" Now this is the million dollar question. I don't discipline my children the same. I don't allow my daughter to do certain things, and those things are punishable by time out or removal of privaleges. Other things that I determine are due to her problems I let slide. Her siblings are younger and don't understand yet, I'm not sure how I will handle it when they are older. I do get very frustrated. Kailey is so difficult ALL the time. Sometimes I yell, sometimes I spank, sometimes I cry, but usually I just put her in her room and make her play in there while I calm down so I don't do or say something I'll regret later.

I'm sorry about what hapened with your DH.

Sarah T

Avatar for springolife
iVillage Member
Registered: 05-09-2003
Mon, 02-27-2006 - 10:17am
PS- "The Explosive Child" is EXCELLENT- it helped me understand myself and my daughter. I recomend it to anyone who has trouble with a raging child...
iVillage Member
Registered: 03-31-2003
Mon, 02-27-2006 - 1:21pm

Yes yes -- I second the recommendation for "The Explosive Child"!!! It completely changed my understanding of my DD. I still do get frustrated sometimes... but this book helped a LOT.

Jennifer

iVillage Member
Registered: 02-24-2004
Mon, 02-27-2006 - 1:31pm

Hi! Welcome back!

First, I just wanted to say how sorry I am about your situation with your husband. Raising children on your own is very difficult. My mom raised 3 of us, by herself...so I know the stress you are under.

I think alot of the moms here have already given you some great advice. My son is 7 HFA. What I found that works best, is a steady routine. I keep things calm at home. Too much stimuli isn't great. Make sure his sensory needs are being met. We have a mini trampoline, rocking chair, bouncy balls, and we give massages too. What you need to do is get to "know" your sons needs. This will help you to figure out what will work best for him. Try things out....that helps too. Sometimes you won't know til you try it.

I wasn't able to find books at our library...but the book stores have lots of great books. Talking calmly, using simple sentences...nothing complex. Staying calm is real important too. Nathan doesn't really get punished. But I do explain things to him....right from wrong. He doesn't always get it, but it's a long process. I spend my time REPEATING things over and over to him. It's hard, it's time consuming....but it's how they learn. I take lots of deep breathes! And constantly remind myself, that he doesn't understand. He needs me to help him understand.

I also have another son who is 9. He has a problem understanding why Nathan gets everything he wants, and why Nathan doesn't get into trouble, etc., etc.....I am forever explaining autism to him, and even bought him a book that explains his brother's behavior. I think it takes time for siblings, just like it takes time for us. I have to just remember to give both boys an equal amount of my love and attention.

Anyway, I hope we were all able to give you some help. Take care and let us know how things are going.

michelle

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