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Coping with PDD


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  #1  
May 3rd, 2009, 05:16 PM
mommaluvs2730's Avatar Platinum Supermommy
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So Im still use to the idea of Nicole having autism/PDD. How did you all cope with the reality of it? How do you deal with the meltdowns? How do you prevent them?
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  #2  
May 3rd, 2009, 06:29 PM
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Well I would try not to worry about the reality of it until you get a actual diagonsis. For me its just taking one day at a time. Meltdowns can not always be advoided. Sometimes if I can see he is getting frustrated I can advoid them sometimes. Dealing with meltdowns I either try to calm him down or just let him melt down. Melt downs are not easy but you just have to learn to cope with them. We have days where he barley has meltdowns and we have days he has alot of them. Meltdowns used to stress me out but they have just became a way of life in this house if that makes sense.
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  #3  
May 4th, 2009, 07:15 AM
mommaluvs2730's Avatar Platinum Supermommy
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Yeah I get really really stressed out with them. But then I try to take a step back and realize that she is frustrated and cant explain why. It doesnt help though when we're at places and she does it cuz either my friends want to help quiet her down which just makes it worse or I feel like its a nusience to my friends when she does that. I know all kids meltdown and its just a fact of life but I cant help but feel embarrassed cuz I cant "control" my child. Another thing, is it normal for a child with a disorder like this to get attached to someone that they really dont know. Because she usually does not let anyone else touch or hold her but our friend Nate tried it and she is attached to him. She almost fell asleep on him which she never does, she leans her head on him, she just really likes him. It may be nothing but its just different kwim?
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  #4  
May 4th, 2009, 08:02 AM
~Jess~'s Avatar Platinum Supermommy
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For us, the key to keeping meltdowns at a minimum is to allow him to do his rituals without rushing him, keep the routine the same every day, and prepare him well for transitions with lots of talking, story-telling, and book-reading. We also have to move at a slower pace when trying new things or traveling. But even throughout the day I have to give him warnings. Okay, 10 more minutes of this and then we're gonna move on to that. Now you have 5 minutes, 1 minute, etc.

For example, introducing him to the beach was a week-long event. The first day he didn't even want to touch the sand. He just wanted to look at it. If anyone even suggested he step onto it or go near the water, he'd flip out. The second day, I carried him onto the sand kicking and screaming, but stayed right at the edge. He touched it, played in it. This lasted a couple of days. Then he moved closer to the water when I promised him he didn't have to touch the water. He touched the firmer sand, and got used to that for a couple of days. Now, that trip, he still wouldn't touch the water or even the wet sand, but on the next trip, he just had to spend a couple of hours on the sand, and then ventured out to run away from the water on the wet sand, and then eventually even touched the water. That's pretty standard for him. Even before we got the diagnosis, I always told ppl that "he's slow to warm up" to new things. Even something fun like Disneyland made him cry and beg to go home all day long the first day we went. And if he has to meet new ppl? Oh forget it, he'll be a mess no matter what!

On a day-to-day basis, I've noticed that if I'm in a hurry, it really throws his routine off & almost guarantees a meltdown. Or if I change something in any way. For example, he slept late yesterday (9am), I closed his bedroom door only leaving it open a crack so that the other kids wouldn't wake him up. He woke up SCREAMING and crying because his door was closed and it scared him because that's not normal. Little things like that drive me crazy, but what can you do?

Oh, and no, he's never randomly become attached to someone. He's very nervous & scared around new ppl. I'm really nervous for the first week of kindergarten. I think I'll have to be there with him the whole time....
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  #5  
May 4th, 2009, 08:14 AM
~Jess~'s Avatar Platinum Supermommy
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I just wanted to add, that it looks like your daughter is only 2, and tantrums are pretty par for the course at this age & not necessarily a sign of ASD. I wish you luck on your evaluation. Hopefully it's just sensory issues combined with the "terrible 2s."
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  #6  
May 4th, 2009, 12:57 PM
mommaluvs2730's Avatar Platinum Supermommy
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Thanks so much Jess for that little bit of input. See this is where Im confused! I know she is only two and two year olds can only do so much plus she was socially sheltered cuz she never went to a daycare. My mom always took care of her. So how do you decipher (sp) between normal two year old behavior and ASD? Gosh Im just soooo confused. I know getting an eval is the best thing. First thing is first but then I have a million questions running through my head. Like if it is, is it my fault. I know people say no its not but doesnt it have to come from a genetic make up? I feel like I have failed her even if it isnt PDD but she is obviously behind in some things. Sorry for going on and on. I know you all are dealing with a lot and probably more than I am! Thanks again ladies for all the advice and best wishes.
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  #7  
May 5th, 2009, 09:35 AM
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Nathan was dx'd with Autism 2 months ago and I'm still trying to sort things out in my head. It is not an easy thing to do. Mostly right now when he has a good day, I have a good day and when he has a bad day, I feel like crap. I am trying to stay positive but some days I struggle especially when I see other 2 year olds doing typical things.

It is very hard to distinguish between typical 2 year old stuff and ASD stuff. My DH and I say that constantly and we ask his therapists the same thing all the time. It is a weird situation for us since he has a twin the is typical except for a moderate speech delay. Almost everyone that know us says that Nathan seems like a typical 2 year old until you spend more than a few hours with him and you realize that he does the same things over and over again.

I will also tell you that my worst day was the day that I realized that Nathan was on the spectrum. The diagnosis day wasn't nearly as hard for me. Best of luck with the eval and know that if indeed it is PDD that things will get a bit easier to deal with in your head as time passes.

*** And I love the way you spell Raegan. I wish I would have done that.
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  #8  
May 5th, 2009, 12:29 PM
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For me, part of what initially made accepting the diagnosis easy was that I did suspect autism for so long; by the time he had his evaluation, I was so used to the idea that I was more scared of him not getting a diagnosis.

I do have times where I feel so overwhelmed when I realize that autism may never "go away"; its not that I don't accept it, but more like I am scared for the future. We don't have a supportive extended family, so we worry about what happens when he is grown: will he be able to live independantly? Drive a car? Start a family? I also believe its important to allow yourself time to grieve; not that autism is a tragedy of anything (far worse things can happen in life), but it is okay to grieve because autism does come with a lot of uncertainty, and the fact is there are no experts on autism yet.

As far as meltdowns and stuff, some days you will simply go into survival mode; its so so important to step back and look past the meltdowns and see that it is your child, trying so hard to make sense of this world.

Don't worry about what others think, because the fact is that most people are completely clueless as to what raising a child with autism entails. It amazes me how unintentionally cruel people can be when it comes to autism; if our children were in wheelchairs, no one would ever say "Oh, he's just lazy." If they had cancer, no would say "Eh, anything to get out of school." One thing that dh and I have learned the hard way is that we do need to be careful about who we confide in, because they just. don't. understand. I have found a small group of autism moms, and the support we receive and give each other is invaluable; we have garden variety views on autism, but it doesn't matter because we are all in it together.
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  #9  
May 6th, 2009, 06:24 AM
dotcomkari's Avatar Bianca, Kai & Asia's mom
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Kai was dianosed almost a year ago, and I am still not fully coping with it. You have all these dreams for you child.. and you know they will never reach them. Kai is 3 years old and I never heard him say I love you. Yes, I know he loves me.. but to hear those words.. I would do anytrhing. We learned he may never fully talk... and we wonder what his life is going to be like. .. it is HARD sometimes.. I see other kids his age playing, talking.. .. and just being kids.. and I look at my son struggling to fit in. It is hard to hold back the tears.

For us.. the most important thing is to not think about all the stuff he can not do.. but think about how far he has came.. and the things he can do... and be blessed to even have hiim here with us.

*hug* hang in there hun.. and know you have friends who understand .. and you can vent and lean on us anytime
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  #10  
May 6th, 2009, 09:18 AM
AlexKatieAiden Mommy's Avatar Linda
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Alex was diagnosed almost a year ago and I am still not sure if I fully accept that autism will be apart of our life forever. I too try not to think about the things that he will not be able to do but try to think of the things that he can do now that I thought were impossible just a year ago.
When Alex has a meltdown we use bear hugs and his weighted blanket (he is a sensory seeker). It has worked wonders for us after alot of trial and error. And basically that is how we solve most issues, alot of trial and error, and what works today might not tomorrow. Alot of this is probably what you are doing already.
Basically learning what things will send your child into meltdown mode and trying to avoid them, or introduce them slowly is the best way to prevent meltdowns. Alex has alot of issues with transitioning and so I always try to transition him slowly with alot of warning. Like if we are at the park and have to leave soon, I will say, Five more minutes until we leave, then four, three, etc. And when it is time to go then we move slowly to the car. It doesn't work all the time but does the majority of the time.
I hope this has help you and answered your questions.
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  #11  
May 8th, 2009, 07:51 AM
mommaluvs2730's Avatar Platinum Supermommy
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We do the bear hug also. It works most the time but gosh she is a tough little booger! How long do you hold him like that. I know Josh had to do it for a long time cuz she was just flipping out at I dont even know what. I will have to try the heavy blanket. I believe she has sensory integration rather than autism. She loves her silky blankies but I wonder if a heavy blanket would work...Thanks!
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  #12  
May 8th, 2009, 08:46 AM
AlexKatieAiden Mommy's Avatar Linda
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I got my weighted blanket at Affordable Therapy Solutions Alex loves it. He sleeps with it every night. It has a calming effect on him.
I just hold him for however long it takes. It used to take alot longer before we got the blanket. It's weird, he will be flipping out, flailing arms and legs, I hold him and put the weighted blanket and he instantly calms down. He will still be crying but his arms and legs won't be going. It has been a life saver. But that is how he reacts, not every child will react that way. But it is worth giving it a shot.
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  #13  
May 8th, 2009, 09:48 AM
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Jay gets a bear hug time out for 2 minutes.
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  #14  
May 9th, 2009, 09:19 PM
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Hmmm, things that help with Auties....

1) Don't change stuff. It's a cliche, but Auties and Aspies *love* routine. Nice, predictable things make us feel safe and secure. If stuff needs to change, give us plenty of warning and make sure we understand what's going on and why.

2) One of the biggest things that helped me was having my own World. It's hard interacting with the Real World. It's *way* hard dealing with unpredictable, incomprehensible people. To combat this a lot of Aspies (and Auties to a lesser degree) become what Hans Asperger described as "little Einsteins". We'll pick a subject and obsess about it. We'll know *everything* about something, and it'll become our World, our safety and our security.

3) Explain stuff to us. Don't say "You just can't do that" because we don't *get* that. Why not? why can he/she/they do that but not me? Explaining that there's no green cupcakes today because other people ate them all, and if we eat a blue cupcake and a yellow cupcake then it'll make a big green cupcake in my tummy makes logical sense and makes me feel better, even though I'll be upset that inconsiderate people ate all my nice green cupcakes.

4) When we meltdown it's because we can't communicate any other way. In some ways it's like a baby crying - we have emotions we can't articulate and we get frustrated and explode. I still have mine, but I recognise them after so long and I can go somewhere quiet and meditate and it'll pass. If a blankie like AlexKatieAiden Mom describe works, go for it. I used to hide under my bed because it was dark and cool If you can find a way to communicate with us, then it'll make them stop a LOT faster. Most of the time (in my case) it was frustration that people were so stupid (which sounds conceited, but it isn't intended that way. When people dither and question the blatantly obvious, it makes me way grumpy!).

5) Stimming. We stim. Stimming is a... comfort thing, something we do which calms us down, be it spinning, rocking or clicking our fingers. If your child stims, for heaven sake don't make him stop - that's really going to flip him out. Instead keep an eye out for when he does it and use it as a meltdown predictor. Meltdowns are our last resort, but if you take out one of our pressure releases then you'll provoke them that much quicker.

I'll keep thinking of other things to add, but they're the most useful stuff I can think of for now
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  #15  
May 10th, 2009, 07:57 AM
~Jess~'s Avatar Platinum Supermommy
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Originally Posted by TheHusband View Post
Hmmm, things that help with Auties....

1) Don't change stuff. It's a cliche, but Auties and Aspies *love* routine. Nice, predictable things make us feel safe and secure. If stuff needs to change, give us plenty of warning and make sure we understand what's going on and why.

2) One of the biggest things that helped me was having my own World. It's hard interacting with the Real World. It's *way* hard dealing with unpredictable, incomprehensible people. To combat this a lot of Aspies (and Auties to a lesser degree) become what Hans Asperger described as "little Einsteins". We'll pick a subject and obsess about it. We'll know *everything* about something, and it'll become our World, our safety and our security.

3) Explain stuff to us. Don't say "You just can't do that" because we don't *get* that. Why not? why can he/she/they do that but not me? Explaining that there's no green cupcakes today because other people ate them all, and if we eat a blue cupcake and a yellow cupcake then it'll make a big green cupcake in my tummy makes logical sense and makes me feel better, even though I'll be upset that inconsiderate people ate all my nice green cupcakes.

4) When we meltdown it's because we can't communicate any other way. In some ways it's like a baby crying - we have emotions we can't articulate and we get frustrated and explode. I still have mine, but I recognise them after so long and I can go somewhere quiet and meditate and it'll pass. If a blankie like AlexKatieAiden Mom describe works, go for it. I used to hide under my bed because it was dark and cool If you can find a way to communicate with us, then it'll make them stop a LOT faster. Most of the time (in my case) it was frustration that people were so stupid (which sounds conceited, but it isn't intended that way. When people dither and question the blatantly obvious, it makes me way grumpy!).

5) Stimming. We stim. Stimming is a... comfort thing, something we do which calms us down, be it spinning, rocking or clicking our fingers. If your child stims, for heaven sake don't make him stop - that's really going to flip him out. Instead keep an eye out for when he does it and use it as a meltdown predictor. Meltdowns are our last resort, but if you take out one of our pressure releases then you'll provoke them that much quicker.

I'll keep thinking of other things to add, but they're the most useful stuff I can think of for now
THANK YOU SO MUCH! It's great to hear from an adult with ASD's perspective! Please, continue posting on our board!
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  #16  
May 10th, 2009, 06:16 PM
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Quote:
Originally Posted by TheHusband View Post
Hmmm, things that help with Auties....

1) Don't change stuff. It's a cliche, but Auties and Aspies *love* routine. Nice, predictable things make us feel safe and secure. If stuff needs to change, give us plenty of warning and make sure we understand what's going on and why.

2) One of the biggest things that helped me was having my own World. It's hard interacting with the Real World. It's *way* hard dealing with unpredictable, incomprehensible people. To combat this a lot of Aspies (and Auties to a lesser degree) become what Hans Asperger described as "little Einsteins". We'll pick a subject and obsess about it. We'll know *everything* about something, and it'll become our World, our safety and our security.

3) Explain stuff to us. Don't say "You just can't do that" because we don't *get* that. Why not? why can he/she/they do that but not me? Explaining that there's no green cupcakes today because other people ate them all, and if we eat a blue cupcake and a yellow cupcake then it'll make a big green cupcake in my tummy makes logical sense and makes me feel better, even though I'll be upset that inconsiderate people ate all my nice green cupcakes.

4) When we meltdown it's because we can't communicate any other way. In some ways it's like a baby crying - we have emotions we can't articulate and we get frustrated and explode. I still have mine, but I recognise them after so long and I can go somewhere quiet and meditate and it'll pass. If a blankie like AlexKatieAiden Mom describe works, go for it. I used to hide under my bed because it was dark and cool If you can find a way to communicate with us, then it'll make them stop a LOT faster. Most of the time (in my case) it was frustration that people were so stupid (which sounds conceited, but it isn't intended that way. When people dither and question the blatantly obvious, it makes me way grumpy!).

5) Stimming. We stim. Stimming is a... comfort thing, something we do which calms us down, be it spinning, rocking or clicking our fingers. If your child stims, for heaven sake don't make him stop - that's really going to flip him out. Instead keep an eye out for when he does it and use it as a meltdown predictor. Meltdowns are our last resort, but if you take out one of our pressure releases then you'll provoke them that much quicker.

I'll keep thinking of other things to add, but they're the most useful stuff I can think of for now
Regards to number 5 I have learned the hard way not to stop Jay from stimming. Though his teacher from EI would get him engaged with something else, then let him stim for a few seconds and repeat
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  #17  
May 11th, 2009, 12:55 AM
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Regards to number 5 I have learned the hard way not to stop Jay from stimming. Though his teacher from EI would get him engaged with something else, then let him stim for a few seconds and repeat
Yarr, I know of quite a few parents who did their best to stop their kid's stimming, then wondered why their kids started to meltdown more frequently. It's tough if the stim in question is something loud (like stamping on the floor!) but learning to manage it is far more useful than stopping it. Recognising an impending meltdown and offering some stampy time can do wonders!

Something else that's way useful with Auties and Aspies is to have a giant calendar and write stuff on it. Getting them into the habit of checking it daily and writing on their own events makes them more aware of things going on, and if you write your own events on (even if they don't include the child) then they'll be more aware that you have things to do as well. My grandmother had an awesome week-to-a-page calendar split into 4 columns, one for each member of the family, and it meant we always knew what was happening and what was coming up.

It's part of the reason I tend to flounder around just now - I don't have routines!
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  #18  
May 11th, 2009, 07:40 AM
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Yarr, I know of quite a few parents who did their best to stop their kid's stimming, then wondered why their kids started to meltdown more frequently. It's tough if the stim in question is something loud (like stamping on the floor!) but learning to manage it is far more useful than stopping it. Recognising an impending meltdown and offering some stampy time can do wonders!

Something else that's way useful with Auties and Aspies is to have a giant calendar and write stuff on it. Getting them into the habit of checking it daily and writing on their own events makes them more aware of things going on, and if you write your own events on (even if they don't include the child) then they'll be more aware that you have things to do as well. My grandmother had an awesome week-to-a-page calendar split into 4 columns, one for each member of the family, and it meant we always knew what was happening and what was coming up.

It's part of the reason I tend to flounder around just now - I don't have routines!
When my boy stomps I try to get him to go on the trampoline. Does not always work. I also notice he does it more when he is sick
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  #19  
May 11th, 2009, 04:15 PM
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hmmm, Trampoline might not be the best thing to stomp - it's not just about the physical action, it's also about the results. A nice stomp makes lots of noise and you can *feel* it in your foot, stomping on a trampoline isn't quite the same. If it's easy, you might get better results taking him outside for a stomp around the yard or along the road.

Being sick tends to be a pain for Aspies and Auties. In my case, I tend to use a lot of energy trying to cope with things. Being ill means less energy, so I tend to get very grumpy and frustrated with things. There's also the usual ill feelings of helplessness, coupled with the fact that our bodies aren't working properly. Plus, being stuck in bed changes our routines yet again, and it's because of our bodies but it's not our fault... it's a confusing and frustrating time!
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  #20  
May 11th, 2009, 05:03 PM
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That's sort of what we do to: don't try yo stop the stimming, just redirect him to a more appropriate place. Like ds' recent stimming object was the blade of our fan, but he leaned in to close and cut his lip , so I got him a little pinwheel to spin instead.

Quote:
I also notice he does it more when he is sick
Yes!!! Ds had a cold last weekend, and I noticed thahe was stimming A LOT more than usual, like opening and closing my bedroom door for nearly 5 hours straight!
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