This probably wasn't the best place to put this, but her SID issues are tied in, so I'm just going to vent it all in one place to make things easier for myself.

Ava has literally become an animal...she can go from my sweet, loving, polite little baby girl to a hitting, biting, shrieking, scratching, pinching LUNATIC in a matter of seconds...literally.:hissyfit: :favorites21: :hissyfit: These are not tantrums...this is all out violence. It's really escalated lately, too. Luckily she's asleep, thank God!, so I've got a sec to get this all out.

She's been feeling really, really crappy lately...we do think a lot of her behavioral/emotional/psychological issues are chronic pain related. She cannot stand to have things touch her...even her beloved Swimmene (her blanket). Clothes are a NIGHTMARE fight, so are diapers, and I've basically just given up on trying to brush her hair...she's got some really nice dreads going at the moment. All of this, we can deal with...yes, I want to rip my hair out most of the time she's awake, but hey...what can you do?

What we cannot deal with is the violence. As soon as she gets frustrated over the least little thing or hurts herself, it begins. Today, my friend got a good dose of the Ava that we've been dealing with. We had gone over to take H her Christmas present and to play for awhile. Today was one of the first times that Ava really kinda sorta interacted, and H didn't come running every 4 seconds to tell us that Ava wouldn't play with her, etc. After almost 1/2 an hour, the girls came back in to the living room, and Ava asked for a cookie...score! We decided it was snack time, and set them up at the table, hoping for some peer pressure. Ava immediately took a bite and started spitting...she got up and was just spitting on the floor...just spit, no more cookie left. Of course, I always immediately stop this. So then, she spies H's swingset in the yard, and wants to go outside. No, Ava...it's snacktime, we'll go outside in a minute. This set off a scene that my friend couldn't even believe. Ava screeched, hit, bit, kicked, and scratched me, and then proceeded to pull out a fistful of hair above my left temple. She had literally gone off the deepend within about half a second. I put her down, and warned her that we were going to leave if she couldn't wait until H had finished her snack. She then spit ON me and scratched my glasses right off my face, so I snatched her up, made her say goodbye, and hauled her out the door. On the way out, the little :censored: says "Merry Christmas!"

We see dev. sometime this month, but not if I can't get the ins. BS straightened out...can you believe I'm STILL dealing with this?!?!?!?!?!?! She still has NO coverage. We've applied for dh's ins. but haven't hear anything yet, so who knows if they'll even take her. This is just getting insane. We need some MAJOR help with her. Our OT is even out of strategies for how to deal w/ her. Our Early Steps coordinator, who saw Ava FREAK and throw a wooden block at our OT's head a week before xmas, referred us to a behavior specialist who works w/ sensory kids that will come to the home to help parents attempt to deal, but she's out until Jan. 7.

Ava is just an all out emotional/behavioral wreck right now. Sensory stuff thrown in, and she's just too much to handle some days...she's VERY stressful to deal with these days. She wouldn't even open a present at xmas...TG that Santa doesn't wrap his presents, LOL! All she seems to care about is ice cream and the ice cream man, dirt day cake, Santa, Cwistmas Wights, and SpongeBob...these are the obsessions. Every night before bed, she asks for each one, and I have to tell her that each is asleep.

What can I do? I'm very frustrated, and I really dread the days when it's just the two of us...all day long. Like today!!!! :hairpull:

Sorry to dump so much out at once, in one post...I just thought it'd be easier to streamline my whining, ROFL.:evil4: :evil4: :evil4:

I guess the real question is ...is it all pain related? If so that is very sad.

Are you able to talk to Ava..like after the situation where you had to leave? Ask her why she behaved that way. Sorry, I forget at what age kids do what KWIM? So I don't know if her age is old enough to reason with? Was she in that much pain after one cookie? Or is it just testing? I mean she did not get her way...right?

I guess you are hoping for answers/suggestions and I am asking more questions.

Sometimes I just don't think the answer is easy.

I know when my daughter, not mentioning any names, was in her early teens it was horrible to try to get through each day with her. I KNOW she was very unhappy...but I don't even think she knew why KWIM?

Just keep telling yourself "this too shall pass".

And btw...heres to a better year ahead.

:hug:

oh lingsey HUGS that must be so hard your poor thing, I dont have any advice sorry

Hopefuly the developlement pead will help with it all

:grouphug: Lindsay

I think I've told you this before, but Catherine reminds me very much at times of Helen Keller in a movie scene where she's just like a little wild animal. Before Anne Sullivan teaches her any communication or coping skills. I picture Ava the same way.

I don't have any words of wisdom. I don't know what to do myself, frankly. There are days that I dread hearing her wake up in the morning. Like this morning. She started repetitively screaming "no!" as soon as she woke up. I knew that was the harbinger of doom. dh finally went to get her and she melted down because she couldn't have the egg cup (purple one with easter eggs on it; no lid) or the train cup (same; no lid) if she was going to wallow in my bed and pout. dh brought her a sippy cup and she darn near chucked it at me, this after screaming for several minutes and refusing to even touch it.

She did become more pleasant after zoning out watching Playhouse Disney for a bit. I took her to Starbucks, which for some reason is her favorite place. She was an angel ... until it was time to leave.

Act 2 ... (or Act 1 revisited)

Im so sorry you are dealing w/ this, have you thought about going to a child psych or counseler along w/ her? I don't know if that will help w/ her age? I am thinking of doing that w/ carson if things do not ease up! He is a holy terror w/ me! NOt to mention his brother who he will just walk up to and slap across the face for no reason at all....
his obsession FISH! and he drags his fish toys all of them to bed every night and he cannot sleep w/o them...
I hope things get better for you and AVA! for your sake!!!
all I can say is find the nearest bottle of tequilla and chug! thats what I am doing tonight! plus my dr put me back on a high dose of clonazapam to deal w/ him:drinkalot: :hug:

Oh, Linds....you have a ton on your plate, as usual! :hug: :hug: :hug:

This may sound wrong, but I almost wish there was some kind of baby Xanax that Ava could take at times like this. It's clear that she irrational about it, and just gets SO worked up. Ok, so if the Xanax is not for Ava, then maybe for Mommy!

I can't believe you are still dealing with the insurance BS. Just WTH is their problem?! :angry7:

Lesley, you're so right...that sounds like a totally typical morning here, too. I have no idea what makes her this way...is it frustration, pain, pure meanness? I would love to be able to communicate/reason with her...but like our OT pointed out, her functional use of language is nil. Her speech is very clear, but honestly, it's really only about Spongebob, ice cream, or to ask us what we're doing. She doesn't really communicate feelings/emotions...only things she wants. She still can't even really communicate pain to us...you can just see it in her. And frankly, most of the time I don't think she really comprehends much of what we say to her in relation to her behavior. She doesn't really "get" time out, nor does she understand threats of any sort. We're not spankers, but with Ava's health, we would NEVER even think about spanking her...plus, I just don't think it sends a good, effective message, kwim? And reasoning with her brings blank stares, at best.

I really just don't know, you guys. You all know I'm not religious, but I'm just praying that we can straighten out the ins. fiasco, b/c we desperately need the dev. appt...ASAP.

ROFL, Xanax and tequila all around! That's the best idea I've heard all day! :rolling:

I am so sorry that you are going though this. It is obvious that she needs help and that you need help dealing with her. It is total BS that you still don't have coverage for her. It makes me so made that she is just being left to fall through the cracks.

You are doing a GREAT job with her. I just hope you will all get the help you need soon.

Well I know it doesn't help much but know you are not alone...Jayden has begun to throw major melt downs for ????????? We don't freaking know.....tonight was a prime example...my dh has not been privy to one of these new melt downs which consist of high pitched screaming and screeching thrashing of arms and legs...if you go near him it escalates to an even higher level...if you walk away he follows.....pick him up if you can and he hits and scratches at your face....my dh took him home tonight and Steph wasn't there yet...well many times Jayden doesn't want to be home and it sets off this meltdown.....dh was so frustrated he was getting angry because he could not stop him and there was no picking him up and soothing him....he is blaming the meds!!!!GGGGRRR!!! OMG what about Jaydens SID and other issues!!!! Thank goodness Steph came in as I was on the phone with him because he threw the phone and was chasing a screaming banchi around trying to make him stop.......he is still there now...I called Steph and we laughed (not funny haha) just ya see laugh....as I described the whole scenario as we were sure it happened....dh still insists it's the meds....my vent on your thread sorry.....all we do is wait for it to end....sometimes CARS gets him to stop...again a obsession distraction...I'm sure thats not good but OMG what else can we do.....huge hugs Linds ......we will all get threw this together:hug:

I was so sad to read your post. I think alot of her issues could be the fact that she has suffered so much pain in her life, that is her way of coping with it. It is so sad that these kids have to suffer so much and you have to deal with so much with her acting out. You are such a wonderful mother and i'm so sorry that you have to go through this. :hug:

I do have to ask is the behavioral problems common w/ reflux children? I never went through anything like this w/ wyatt and carson is even having difficulty speaking still... he can say a very small vocabulary and he rarely says anything buy ma ma fish, and bro bro... temper tantrums are always the main source of comunications..... and omg the throwing thhings has to stop....
This can't be normal terrible 2's... he is so obsessed w/ fish its strange its not like when big bro was obsessed w/ spongebob at 2.. at least big bro would have a conversation and not have a melt down over a shirt being put on him, or a jacket, or a hat... carson will wear a jacket in a 88 degree room and have a melt down if you touch it at times...
I just don't get it..
Is this how Ava acts? Should I get him checked by OT? Behavioral Therapy?

oh linds...i am so sorry that you are dealing with this...hugs....and i hope it resolves soon.

((HUGS)) Linds
I agree that a HUGE part of this sounds like it is related to Ava's pain..discomfort...resulting in her having a short fuse and freaking out so easily (to such an extent)

Ava has been a handful lately as well..so I think a small portion of it is age...
Dh remembers we had hard time going anywhere with zach at the same age
Tantrums left and right when they don't get their way..NO FUN...

I feel really sad for you and Ava
Hope you get the insurance straightened out and a therapist that can really help out

I do have to ask is the behavioral problems common w/ reflux children?

I'm going to say "no." My son puked daily until he was 2 1/2, and he has always been the most laid-back, pleasant child. He was highly verbal at an early age, and he had one tantrum in his entire life. He was maybe 2 at the time. I can still see him lying on the kitchen floor screaming and flailing his arms and legs ... dh and I stood there and laughed at him, and he never, ever did it again.

I think we have some of the more extreme children here, but by and large, I don't think reflux and behavior issues go hand-in-hand.

Gosh, Linds. I do feel like that a lot of her behavior is pain related. I mean, that paticular incident sounds like it wasn't directly set off by pain, but simply by not getting her way. That being said, chronic pain definately alters our perception and personality. You take a 2 year old that has communication issues, and one that does't feel well the majority of the time...her fuse is short and she has no other outlets, so to speak, for her frustration than to just flip out. I really feel like the bigger picture is that Ava has a lot going on...pain for sure, but I think the SID is seperate. Unfortunately, that makes it more difficult for her to deal with her pain. So everything is magnified. I really feel like until you get her feeling better, there won't be much you can do to start dealing with her sensory issues. What I mean is that the dev. people can give you all the techniques in the book for dealing with a kid with SID, but if she doesn't physically feel well...it's not going to do a darn thing. I'm so sorry that you just have to keep dealing with this stuff. Insurance and just constant worry about what is going on with your kiddo. It's not fair to anybody.

Also, Angela, I agree with Lesley on the reflux/behavior. Abby was a puker, a happy one though, but a big puker. She was an angel...never a single tantrum. I won't say that Em's never had a tantrum, but I don't think it's anything out of the realm of normal, and now, for the most part...she's actually really really well behaved. She never has tantrum and mainly only cries when she doesn't get her way for a few minutes. All that being said, going back to Ava, what tantrums Em did have were back before she got her tube, and she was undernourised and just felt like crap. Still, they were not the magnitude that Ava has.

Em spends a lot of time in pain as well. But the difference here I think is that Em can tell me..."my belly hurts." or "I feel bad". I can hold her and kind of snuggle and such...she still hurts and still doesn't feel good, but she knows that I know...she was able to tell me.

Did I make sense? I mean to say that while I feel pain plays a big part in Ava's behavior, I think communication is a bigger issue. I really really hope you can get your insurance mess worked out and get her in to dev. Maybe they can work on helping her express herself someway. I think that would be a huge key to unlocking what is really going on with her. HUGE HUGS....call me if you need to rant! Anytime.

I wanted to come back and say to think of it like this: When you are sick, as an adult, and just feel like total crap...then that one last thing doesn't go your way, how do you react? I mean every little thing gets on your nerves, and things that wouldn't be so bad normally, seem so much worse when you feel like crap. But, we as adults can say...get away from me, leave me alone...I feel like crap and just need one damn thing to go the right way for one flippin' time! The average kid would also have some level of expression to that degree. Emily tells me "go way", or the opposite happens and she just wants me to hold her, but EVERYBODY else MUST "go way" and "leave her 'lone" . With Ava, because she just doesn't have the ability to say leave me alone or why the hell can't one darn thing work out in my favor for once...the result is acting out, tantrums, hitting, biting..ect.

So anyway, I'm praying too, for ya hon, to get this insurance BS straightened out and get her seen by dev. Hopefully they can help her find her own way to communicate.

Huge ((hugs)), a lot of this resonates with me, Harry (nearly 6) has Asperger's Syndrome and we have this exact behaviour to deal with. We have been given a few excellent strategies since diagnosis but not much. There just isn't much support available once they are at school.

BUT, at Ava's age any child with an ASD would be on an Early Bird program of intensive help which can make an enormous difference to their future. it breaks my heart that this just isn't happening for you and Ava. I just hope 2008 is a breakthrough year for you and your beautiful little girl.

kate x

I think Mel really hit the nail on the head...as for Jayden, not only is his temperament out of control when he is really not feeling well but it also affects his speech...what little he has....When his reflux is not under control he stops talking period...screeching ensues....but now for instance, this new med he is on is helping him and since he started it about a week ago he is using a few words again and even said 2 new ones...out of the clear blue he said puppy...and he said insect.....so I believe it has a lot to due with the pain they are in....this new med has a effect on him for about 4 hours and then he needs another dose...which we can identify by his behavior change...we check the clock and sure enough his med is due. All of his theropists have told us you can't help them fully until the gut is well.

Lindsay, I have not had the time to read every reply here yet, but I did want to chime in and give you a big hug. Lesley and I deal with this every single day and I often look to her for comfort as there are just so many days I feel like I am going to lose my mind with Iain. I also can not stand screaming anymore. Just can not do it. After dealing with Iain and his marathons, I am done with it and feel my brain burst at the start of shrieking. We have had a great run of it since starting Wilbarger, but believe me, we still have more than our share of moments.

Iain is different from Catherine in that he does have a severe speech and language delay and that REALLY contributes to the severe frustration. I bet that is a big part of it for Ava. I would take that to the bank, actually.

As you know, Iain is diagnosed as PDD NOS, or on the autism spectrum. That does not mean every child who has similar issues will be diagnosed as such, but there are many similarities I see with Ava and Iain. Again, I also see many similarities between Iain and many non PDD kids, too. I just think that having a developmental screening will give you many answers.

We have Rachel and her crew here starting tomorrow. They will see a kid who sleeps on a mattress without any sheets as he would freak if I put them on. They will also likely see much of Iain as he runs around wearing only a pull up these days or he freaks. He can not stand clothes. Period. They will see a whole lot with Iain, I am sure. Trust me, they will be cringing when we go through any transitions. We just got over a horrific reflux flare here again, and that is one reason why I have not been on much. Iain has been up so much throughout the night that Bill and I wondered if we should even bother attempting sleep. We now have it under better control, thank goodness. It is not that his behaviour gets worse when he is sick, it is that we become so sleep deprived that our reserves for dealing with it are drained and make it even more impossible than normal.

I do not think that overall these behaviour issues can be placed on pain. I do agree with Lesley on that. Curran barfed for years and STILL does and he is 6 years old. He has his guts blow up and out of him on a regular basis and yeah, he is not a happy camper when that happens and we do get some behaviour, but it is fairly easy to see where it is coming from and it is vastly different from what we experience with Iain. There is no reasoning really with Iain. I still remember something that was pointed out to me when we first got the diagnosis for Iain and I hold it as the truth regarding autism:

It is we who must adapt, not the autistic child.

For now, I will just give you another hug as I am just popping in and should really come back to read more before going any further.

:hug: :hug:

I think we also need to remember that no matter what is going on, the diagnosis can be the same, but each child can act/react differently to the same situation. But what Leigh said is so key "It is us who must adapt not the Autistic child" I have learned in reading that we need to try and put ourselves in their world and see it from their eyes, hear it with their ears, smell it with their noses, feel it on their skin....Jayden doesn't scream every time we walk in the door because he wants to piss us off.....he doesn't even know thats an option at his age....he is screaming because something is not right for him...we need to figure out what it is. Soon I hope! Personally I think it's because he wants to play outside and is very upset to come in the house...but can't tell us that so he screams...then it's like he forgot why he was screaming and screams because he hears himself......we watch him listen to his voice while he screams...it's really very sad...and slowly he winds down to a very forced moaning just to keep hearing himself, this can last up to an hour (the poor neighbors):sad5: .....this isn't Jayden being a brat it's Jayden trying to figure out his life. But trust me there have been times when he starts this I plop him on the couch and just leave (the room LOL) because I can't take it....there have been days when he cries and I cry because I want to help him and I can't .....I want him to be happy and he's not......and then I tell myself this is Jayden....we need to figure out how to "adapt". Sometimes it feels likehttp://smileys.smileycentral.com/cat/10/10_3_9.gif (http://www.smileycentral.com/?partner=ZSzeb001_ZNxmk278YYUS)but you have us and if you ever want to talk, pm me and I'll get you my # :hug:





http://www.smileycentral.com/sig.jsp?pc=ZSzeb098&pp=ZNxmk278YYUS (http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb098_ZNxmk278YYUS&utm_id=7926)

Good point, Debbie. I've been trying with Catherine to encourage her to use words and not just make grunting/squealing/shrieking noises. I think she's "getting" what I'm saying to her but can't quite put it into action yet.

God, do I love you guys! I honestly don't know what I'd do without you all!!!

You guys really hit the nail on the head...this is not soley pain related. Yes, I do think some of it definitely stems from feeling $hitty, but on the other hand, Ava is "off" in so many other aspects that we are fairly certain that there is something bigger at play. When we saw neuro last, she was insistent on the dev. eval. GI and our OT have both been pushing for it, and the more I see Ava with other kids her age, or even younger, the more I know something is up.

The good news...AVA FINALLY SHOWED UP ON THE CMS LIST TODAY!!!! HOLY bejesus...it's been almost 4 mos now that I've been fighting for this! Our nurse had to have the Sarasota County CMS coordinator call Tallahassee on Friday to see WTH was going on. So, Ava will finally have meds, supplies, etc. She can see dev. and we can finally get the ball rolling to get scheduled for Cinci.

HAPPY flippin' New Year to ME!!!!

:yahoo: :yahoo:

A happier new year for all of you, Lindsay!!!!

OMG...I am so glad to hwear this good news Linds...now you can get the ball rolling:hug:
HAPPY NEW YEAR TO YOU!!!!!!! :hug:

:yahoo::yahoo::yahoo::party0049:YAY!!!!!!!!!!!!!!! !!!!!!!!!!!!
Great news - so pleased for you :smt041
Kate x