Out of control | Autism PDD

bepatient,

You know, I've been over and over in my mind what could have been done differently to handle the situation. We had a long session with her therapist this afternoon as matter of fact discussing just that thing. It never occurred to me that by touching Bell I could have inadvertently been the straw that broke the camel's back. Bell will usually tolerate my touch but it may have been too much for her with all of the other stimulation. I was more concerned at the time that she was about to throw her food.

Thanks so much for your insight...........

T

tysyva,.... you can't beat yourself up over it. What happened is done and surely we all look over it and try to learn from it when it happens to us so we can try to see it earlier and prevent it from happening. with my son many times I am on egg shells because what works this time might set him off next time so we have always encouraged him to use his words and given him prompts when necessary when we can see the behaviors starting. Naturally sometimes there is no pre warning. I give you credit,.... we dont even eat inside McDonalds!

Hi,

I too am so sorry about what you and all your children had do go through. Thank you for sharing your story as it helped to educate me. My 12 year old daughter was diagnosed with PDD-NOS about a year ago, only after a long string of other diagnoses and suspisions.

My daughter has never had a "melt down", and now I finally understand what they are. As I don't think it's right to judge others, I think noone offers to help parents with there kids in these situations because they just don't know what to do. They're not educated on the behaviors that some kid's with PDD's have. They probably feel that they are interferring.

There are parents who don't dicipline there "normal" kids, who in turn throw unbelieveable fits! I think that's probably why your get the looks and coments about needing to control your child.

It's ignorance, lack of education, ect.

Also I was wondering about how you responded to your daughter when she had her fists in her food. Maybe by touching her hands and trying to take her plate away was also just too much for her (?). I don't know but what if it ever happens again, you try just talking to her, assuring her that you understand that she feels uncomfortable, and ask her if she'd like to move to a different table or go home? Maybe this would help her feel in more controll of the situation, and not like she did something wrong and so she has to go home.

Just a thought.

Take care

I too want to say WELCOME TO THE BOARD!!!

I also want to say, although you came out of it all with bruises & beaten up a lil, you did a GREAT JOB

I know that you don't FEEL as though you did such a good job, but you did the best you could...I dunno if I could've done as well as you did......

God Bless you & your Family & keep you all safe!

LINDA...aka Tony'sMom...aka MWN64
Well done that you managed such a trying situation so well. I have found over the years (my oldest with Autism is 13 and his sister with Autism is 6) that even though our skin gets thicker it still hurts. I have had my share of meltdowns with my son and I have found that carrying cards that I can hand out (e.g. Please excuse my son's behaviour. He has Autism, a neurological disability that affects language, social communication and sensory perception. For further information contact ..........) sometimes helps. I only used it a few times, but just knowing I can makes me feel better. I have reduced the amount of activities I do with all three of my children because of the difficulties, but I still endeavour to do something because like you I don't want to hide my son away. My NT son finds going out difficult with his brother because of the embarrasment and I am finding it difficult to explain to him. He is 10 so can understand what I say about Autism, but doesn't internalise it well. I don't think there are easy answers to this problem except to acknowledge how they feel and to praise them for their positive interactions with their sibling. Good Luck.

I want to clarify something I said in my last post. When I reread it it sounded as if I was comparing my daughters fear of toilets to what you went through at the restaurant.
I didn't mean that at all.
My daughter can get quite physical and I've walked away bruised and battered. And always thinking, 'What am I doing wrong? Why can't I handle this?'
Over time I've realized that I do better than anyone else would. The reason I know this is because I love her more than anyone else ever could.
Thank you all very much for all of your comments. I feel blessed to have found this board. It's very comforting to know that I'm not alone in this.

Jenkx872-I didn't get the impression that you were comparing our daughters, so no worries. Although, there actually is a comparison to be made there. Bell's fear may not be toilets, but whatever it is-(in this case I honestly think it was the smell of our neighboring table's entree that put her into meltdown mode) our daughter’s do appear to have some similar difficulties processing the world around them and I am truly grateful that you have shared your experience with me.

Thanks again to all.

T

tysyva, Welcome to the board. I too am sorry to hear what you had to go through with Bell and your other 2 girls. I know it can't be easy for any of you. I am sure you did all you could to help your daughter and control the situation. Hind sight is often 20/20 but you can't beat yourself up over it... just possibly learn from it. We already have to do SO MUCH for our kids. Be mind readers and problem solvers for them as well as for ourself and still teach them and be there for our other kids. It isnt easy and I think you're right to not care who stares or says what because they haven't got a clue! If our kids were doing that from a wheelchair or with some OBVIOUS sign of a disability there would be help offered rather than disgusted stares.

I am sure you have done (and continue to do) all you can and are a good mom. Im not sure if you want some ideas or suggesting of ways to prepare for another outting or if you just wanted to vent and be reassured you did all you possibly could. No 2 times are going to play out identical and all the prepparing in the world doesn't guarantee a smooth outcome.
Oh, I'm so sorry that you had to go thru that but I want you yo know how lucky your daughter is to have you. My guy is only 4 , but we too have had meltdowns. It's hard because as far as the question,"what was i supposed to do?" goes, you did the right thing, you saw the situation was getting to be too much for her and you tried to remove her from that situation. You were wonderful in a time where others might not have stepped up to the plate. It's hard when siblings are present, you want to make sure that EVERYONE is ok, i would just explain to them that their sister has a hard time processing things in an outside environment ( restaurant, store etc.) I agree that you shouldn't keep her "hidden away" the only way she'll be able to learn how to process all the outside stimulis is to experience them herself. It's wonderful that she's made so much progress, don't ever lose sight of how far she's come, we all hit setbacks, bumps in the road on this journey, keep all the progress she's made in your heart and in your mind, it will help you carry on getting her the help she needs. Please don't feel defeated, we all have times ( moments, days, weeks, heck even months) where we feel as if hope is gone, but there could be many underlying issues that is causing her behaviors. i would contact not only her drs but perhaps her nuerologist, it could be an underlying seizure disorder. i wish that these feelings will soon pass and i want to welcome you to the board. I hope you find our board a place of knowledge and comfort.i am nearly in tears as i read that. i have been there with my daughter. i think you handled it very well, considering the circumstances.
tysyva,

Hi I just want to say welcome!! I have a 3 year old son with Pdd-nos. I think you did a wonderful job handling this considering the day you have had. Take care,

Karrie
Just wanted to say welcome. I think you handled it very well. I really don't see what else you could have done. I have a 3 yr old dd with pdd-nos and I know that when she is having a meltdown in public, I can barely handle her and she only weighs 36 pounds! I can't imagine how hard it would be having to deal with that in a 9 year old, let alone with other children to take care of and watch out for as well. I think you deserve a big hug and pat on the back for doing such a great job! I can definitely relate to the not being able to go out places, my dd went through that as well. I couldn't take her to the grocery store, or any store, the drycleaners, restaurants, people's houses, etc. or any public restroom without utter terror and meltdown. I used gradual exposure to get her used to the grocery store, etc. (took her and stood outside the door while she cried, then left. Then stood inside, then left. Then walked down an aisle, then left. Then bought one item, then left. etc.etc. It took a long time but now she actually likes the grocery store and knows she'll get a treat there). Also had to do gradual exposure to get her into her OWN bathtub!! Still can't get her into a public bathroom but I'm working on it. Anyway, just wanted to say, my heart goes out to you. It's really tough dealing with all this and having to do it in the public arena is especially tough. We just have to remember we know the whole story even if others don't and remember we are doing what's right for our children. I know after an incident like that I feel drained and defeated, violated almost. It's hard. But please go easy on yourself if you can - you did the right thing!
OH you poor woman! Sorry I don't know if you wanted gushy sympathy, but that's what I was feeling for you. I think you did all you could. I mean what else were you supposed to do? Beat her over the head w/ a mallet until she was knocked out! I tell ya I've felt like doing that to ds a couple times. J/k Had to put a little humor in there. But the truth of how hard this is really isn't funny. My ds isn't too bad at home. He has frequent tantrums, but they are often mild and short in duration. Most times anyway. Outside of home is harder. I have had many stares (and glares
Amber
I know exactly how you feel. I've been there and will be again. My daughter is 7 and has either HFA or AS(It's not quite been determined) Just when I think we've seen the last of the meltdowns....here we go again. But don't give up hope. You did everything right.
When you said, "I want so badly to know this little girl..." my heart ached for you. Sometimes I just want to crawl into my daughters head and see the world through her eyes so I can understand. I've accepted that she has her own world. I just want to build a bridge from my world to hers we can visit one another.
Sensory Integration Therapy has helped alot.
Don't give a flying flip about people staring and shaking their heads. My daughter is terrified of what she calls 'tall potties'. This really just means toilets that are loud when they flush. (This is only one of a million fears) She doesnt trust any public restroom. The moment she feels the urge to go the screaming starts. She will fight to the death not to go in there. You should see the way people look at me when she's screaming,"NO PLEASE MOMMY!!! HELP!!!HELP!!!". She's starting to trust me a little now. I promise her that there will be no flushing. I go to the bathroom door, open it and ask everyone not to flush because I have a child here who hates the sound it makes. You should see the looks I get then.
I've even stopped people at the door before they come in.
I wish I could say something to make you feel better. Just trust in yourself. You're a good mom or you wouldn't be here.
Good afternoon. I’m new to this board, so I would first like to say hello, and secondly, thank you for taking the time to read my post.

I have a 9 y/o daughter who has been diagnosed with Aspergers (subject to change). The diagnosis came only within the last year or so but we’ve always known that my little Bell was different. She has been diagnosed with HFA, then PDD-NOS, Bipolar Disorder, ADHD, and the most recent-Aspergers. It doesn’t matter to me what you call it, what I know is that Bell needs me to help her escape whatever it is that tortures her.
Okay, I know that sounds a bit morbid or over the top, but that’s what it is.    Tortured and trapped. I want so badly to know this little girl and just when I feel like we’re making some headway she slips back (possibly further than before) into the shadows.

Bell has grown quite a bit since her last meltdown. It’s an odd thing to judge your child’s physical growth by your ability (or inability) to restrain them.

Yesterday evening the smells and sounds at the restaurant we were dining at proved to be more than she could handle. I first noticed her sensory overload because she was grinding her fists into her food. I placed my hands over hers and attempted to remove her plate and she was on me, her teeth clamped tightly to the flesh between my finger and thumb. Time to go. As soon as I was able to pry my hand from her mouth I told Bell’s sisters, one 12, one 8 that we needed to pack it up. I arranged myself for the struggle I knew was about to incur as Bell hummed and rocked fervently.
”Come on guys, let’s get going.”

Nothing.

“Come on Bell, we need to leave.”

She screamed and knocked a drink from her sister’s hand. Then picked up some ice and threw it at the folks at the table next to us.
Here we go.

I tried to move her, but she clung to the table dragging it an impressive distance and then she wiggled free from my grasp and threw herself to the floor. I handed my oldest the keys to the car and asked her to wait by the exit. I tried to get a good hold on her and couldn’t. She’s flailing and screaming obscenities. Then she began to bang her head on the floor. I had to get her out of there. She wrestled free about 5 times before we made it to the car. I tried several techniques, but she was like a wild animal. At one point I had her over my shoulder and she was pulling at strangers-grabbing their hair and clothes. The struggle seemed to last hours. In reality, it was about 30 minutes which left me physically and emotionally drained. So, we’ve made it outside…..away from the crowd, but I can’t get her any further. I managed to get her into the driver’s seat of our van and she’s locked her arms in the wheel and she’s screaming. I want to scream too. I’m used to being stared at. This wasn’t my first rodeo and the entire family has developed very thick skin. People don’t understand. I know the head shaking and whispers equate to: “That mother needs to control her child.” The truth is the situation was out of control. I was scared. That was the difference. For the very first time I felt like I was in trouble. Standing outside the car as Bell continued her animal like behavior, I paged through the contacts on my cell phone. Who can I call for help? I’m sweating, and bleeding……busted lip, bites, scratches…….

Bell’s grandparents showed up about 15 minutes later and we were able to get her home safely. Of course I’ve contacted her doctor and therapist and believe me; I will get her the help she needs. What nobody seems to be able to tell me is what was I supposed to do? I don’t doubt that I could have handled the situation better than I did, but how? People will lend you a hand when you’ve locked your keys in your car, or you can’t manage all of your groceries, but what about when your child is having a meltdown, and you cannot handle it yourself? What about Bell’s sisters? What do I tell them? They did not understand what was happening. They knew it was bad, and they were scared, but they don’t understand why mommy couldn’t make it better. There was a time when we just didn’t do certain things because of Bell’s disability. In the same way that you wouldn’t take a hearing impaired child to the symphony, I wouldn’t take Bell to the grocery store, or a restaurant, or the movies…..really any public place. But she’s come so very far and I don’t want to keep her hidden away either. I’m feeling frustrated and defeated. Any advice is appreciated.
Welcome to the board. I have a four y/o Dx HFA. He is quite a fighter at times but he only weighs 37 lbs. I aways hope that he will learn control as he gets older but I see him gain it then lose it.

My son has difficulty with grocery stores. So far it's not to bad because he fits in the back of the cart but he will soon outgrow my solution.

I just wanted to also say I feel you handled your situation well. I know you always look back and try to pinpoint that trigger that set them off but sometimes you never find it. It sounds like you kept a level head and handled yourself well. (I know with me I usually have a good cry later away from my kids and the spectators.)

Welcome again!
Nelle
I will probably catch hell over this one.....but when I was 18 I worked as a Direct Care Worker at a home for adults with developmental disabilities, we called them "clients". There were times when a client would have a meltdown such as you all described with the biting, kicking, punching, breaking things, etc., (we called them "behaviors" and in order to prevent them from hurting themselves and the other clients we would put them in a "basket-wrap". We were trained to do this in a manner that wouldn't hurt the clients, but it consisted of taking their arms, criss-crossing them and holding them behind their back until they calmed down. Mind you, we always had two people on staff and usually it took the two of us to perform the basket-wrap on adults - they were usually ridiculously strong. I don't know if care homes still use this to calm down their clients but I would ask for training as you can get hurt quite badly if you don't use the correct techiques. There is another technique called a "take down" which was basically the basket-wrap taken to the floor. I realize how this would look very bad in public, but if you can use it to protect yourself and your children at home it might be worth looking into.[QUOTE=tysyva]
Good afternoon. I’m new to this board, so I would first like to say hello, and secondly, thank you for taking the time to read my post.

I have a 9 y/o daughter who has been diagnosed with Aspergers (subject to change). The diagnosis came only within the last year or so but we’ve always known that my little Bell was different. She has been diagnosed with HFA, then PDD-NOS, Bipolar Disorder, ADHD, and the most recent-Aspergers. It doesn’t matter to me what you call it, what I know is that Bell needs me to help her escape whatever it is that tortures her.
Okay, I know that sounds a bit morbid or over the top, but that’s what it is.    Tortured and trapped. I want so badly to know this little girl and just when I feel like we’re making some headway she slips back (possibly further than before) into the shadows.

Bell has grown quite a bit since her last meltdown. It’s an odd thing to judge your child’s physical growth by your ability (or inability) to restrain them.

Yesterday evening the smells and sounds at the restaurant we were dining at proved to be more than she could handle. I first noticed her sensory overload because she was grinding her fists into her food. I placed my hands over hers and attempted to remove her plate and she was on me, her teeth clamped tightly to the flesh between my finger and thumb. Time to go. As soon as I was able to pry my hand from her mouth I told Bell’s sisters, one 12, one 8 that we needed to pack it up. I arranged myself for the struggle I knew was about to incur as Bell hummed and rocked fervently.
”Come on guys, let’s get going.”

Nothing.

“Come on Bell, we need to leave.”

She screamed and knocked a drink from her sister’s hand. Then picked up some ice and threw it at the folks at the table next to us.
Here we go.

I tried to move her, but she clung to the table dragging it an impressive distance and then she wiggled free from my grasp and threw herself to the floor. I handed my oldest the keys to the car and asked her to wait by the exit. I tried to get a good hold on her and couldn’t. She’s flailing and screaming obscenities. Then she began to bang her head on the floor. I had to get her out of there. She wrestled free about 5 times before we made it to the car. I tried several techniques, but she was like a wild animal. At one point I had her over my shoulder and she was pulling at strangers-grabbing their hair and clothes. The struggle seemed to last hours. In reality, it was about 30 minutes which left me physically and emotionally drained. So, we’ve made it outside…..away from the crowd, but I can’t get her any further. I managed to get her into the driver’s seat of our van and she’s locked her arms in the wheel and she’s screaming. I want to scream too. I’m used to being stared at. This wasn’t my first rodeo and the entire family has developed very thick skin. People don’t understand. I know the head shaking and whispers equate to: “That mother needs to control her child.” The truth is the situation was out of control. I was scared. That was the difference. For the very first time I felt like I was in trouble. Standing outside the car as Bell continued her animal like behavior, I paged through the contacts on my cell phone. Who can I call for help? I’m sweating, and bleeding……busted lip, bites, scratches…….

Bell’s grandparents showed up about 15 minutes later and we were able to get her home safely. Of course I’ve contacted her doctor and therapist and believe me; I will get her the help she needs. What nobody seems to be able to tell me is what was I supposed to do? I don’t doubt that I could have handled the situation better than I did, but how? People will lend you a hand when you’ve locked your keys in your car, or you can’t manage all of your groceries, but what about when your child is having a meltdown, and you cannot handle it yourself? What about Bell’s sisters? What do I tell them? They did not understand what was happening. They knew it was bad, and they were scared, but they don’t understand why mommy couldn’t make it better. There was a time when we just didn’t do certain things because of Bell’s disability. In the same way that you wouldn’t take a hearing impaired child to the symphony, I wouldn’t take Bell to the grocery store, or a restaurant, or the movies…..really any public place. But she’s come so very far and I don’t want to keep her hidden away either. I’m feeling frustrated and defeated. Any advice is appreciated.
Dear Tysyva:
I hope I didn't delete your message. I am new at this. I don't know where to reply????
Sorry to hear about your daughter's meltdown in a restaurant.
Question: What did your daughter eat or drink while in the restaurant?
Is she intollerant to a particular drink or food?
Does she crave a particular item?
Did she eat or drink anything (1/2 - 1hr. ) before you went to the restaurant?

Just looking for answers like everyone else.
Sincerely,
Mickey

Hi, I could relate to your experience, my son is always making a scene in places. People are always staring but never help, i learn how to ignore everyone's stares. I think you handled the situation like you were suppose 2 us mother's know best, you are your daughter's angel. May god bless you.
Mickey,

Bell had not begun to eat her meal before we had to leave. Earlier in the day she had a bowl of dry Cinnamon Life cereal. She does not tolerate dairy at all and about the only other thing I can think to mention is that she has a very hard time keeping food down in general. It is not GERD, and the only food we have been able to isolate thus far is dairy.

Adjusting her diet to see its effects has been a difficult one for me because she is very limited in what she will consume.

I am sooo very sorry that I can not give you advice because my son is almost the same way. His fits are horrible and he throws things at me, bites, and will scratch me. My 8 year old daughter watches this and I know it scares her and that upsets me. I feel very alone in all this and please know you are not alone and this board seems so great since this is my first day on the board.

Marie

Mom to Melissa 8 and Anthony 5. possible PDD/NOS. major sensory integration dysfunction, develop delAY

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