amo_mea_filiis. Posted March 21, 2013 Share Posted March 21, 2013 Ds and dd's medical/neurological/behavioral problems are constant right now. I'm frustrated. Overwhelmed. Hate calling the dr so often and hate that I'm the one who has to bring stuff up to the dr instead of her giving us ideas. Ds had his EEG on Monday. I'll know the results on or just before April 2nd. While in the hospital, the neuro NP observed a conversation between dd and I and suggested that she have an EEG before seeing the psychiatrist for attention problems. We've been home from the EEG since Tuesday afternoon and ds is still afraid to let me wash his hair. Both kids are vitamin D deficient. Dd did not meet a single goal in occupational therapy because her attention span and social skills have stalled but her body is still growing. Her disability lawyer quit and now I have to find a new one. I have a feeling that I'm going to lose her case, or if i win, will not get the retroactive pay back to the date of application which means no funds to move out of this hell hole. I have to remind my toilet trained for 10 years child to use the bathroom. I have to remind the younger to wipe after using the toilet. The compliant 8 year old* is refusing basic tasks because the non compliant 12 year old is the leading example. * I know i complain that ds is very non compliant, but on his own, he's very helpful and compliant in between his tantrums. Ds's language is actually starting to bug me. He doesn't understand basic concepts. His ability to appropriately express himself has tanked. He's making no progress in speech therapy. Dd's constant, 80 hours a day of repeating scripted anime lines is insane. This bugs ds who screams at her to stop. She stops for 10 seconds, "forgets," and starts up again. I find myself yelling at dd to pay attention. Knowing she may not even be capable or it may not have anything to do with paying attention! Ds is crazy worried about what everyone else is doing, or not getting his fair share. And holy crap, the tantrums that follow when he feels something is unfair are insane! I have to replace a lightbulb weekly because the kids have such major tantrums on the second floor that they blow my kitchen lights. Neuropsych for ds was a joke. I will finally be getting ds's written report from the autism research center in the next week or two. My stupid car is on its way out. My father is going to buy me a new to me car. Wonderful, i get it. Then he's going to make it a condition that we move closer to him. He'll probably even pay for the move. He takes none of the concerns about his grand kids seriously and laughs when i vent/cry to him. My house is a wreck because I'm too busy teaching the kids to clean that I'm not getting anything cleaned! I've even considered a hospital stay for ds. :( Our behaviorist "will be calling," eventually, maybe, one day... I want a long weekend off, but there's no one who can take the kids for that long. Quote Link to comment Share on other sites More sharing options...
Flowing Brook Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: I am sorry you are going through this. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted March 21, 2013 Share Posted March 21, 2013 so sorry!! you are in a really bad spot and you just have to keep going and hope something gives soon! if you cant get him under control at home, hospitalization could be beneficial - if you can get him in to a decent hospital. maybe a little wine? Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted March 21, 2013 Share Posted March 21, 2013 Are you eligible for respite care? Does your dd have OCD that is causing her to repeat things, or is she just trying to annoy you? You talk about her ADD- have you tried medication? It might be time. Your ds- you have been to a lot of specialists. Hospitalization might give you some answers. Was your attorney court appointed? Did you get names from her? I'm not sure she can just quit, if you've paid her. I'm sorry you are dealing with all of this. I hope you are able to determine something, soon! Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted March 21, 2013 Share Posted March 21, 2013 Also- didn't your ds do inpatient video EEG? Did the neurologist not visit you 3-4 times each day? We knew our results and had medication before we left the hospital. Quote Link to comment Share on other sites More sharing options...
maize Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 21, 2013 Author Share Posted March 21, 2013 Are you eligible for respite care? Does your dd have OCD that is causing her to repeat things, or is she just trying to annoy you? You talk about her ADD- have you tried medication? It might be time. Your ds- you have been to a lot of specialists. Hospitalization might give you some answers. Was your attorney court appointed? Did you get names from her? I'm not sure she can just quit, if you've paid her. I'm sorry you are dealing with all of this. I hope you are able to determine something, soon! No OCD. Fixations are autism related. Not sure ADD would be real with her. EEG before considering attention meds. Asking the primary for the EEG is making me feel weird based on everything we have going on. Psych hospital wouldn't be good for ds because I'm refusing meds until we finish this medical stuff. They would give him a psych diagnosis which wouldn't be accurate. :( No respite. We qualify, it just isn't available. Attorney was never paid and will be unless the case is won. He gave me the referral number. I have an appt with 2 lawyers tomorrow and next week. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 21, 2013 Author Share Posted March 21, 2013 Also- didn't your ds do inpatient video EEG? Did the neurologist not visit you 3-4 times each day? We knew our results and had medication before we left the hospital. The neuro NP visited. She was great. The EEG has to be read by another dr and we'll have the results April 2nd. Quote Link to comment Share on other sites More sharing options...
TraceyS/FL Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: The neuro NP visited. She was great. The EEG has to be read by another dr and we'll have the results April 2nd. The only thing I could guess about this is that he didn't have an major seizures that they felt needed meds "right now". Which isn't helping the wait at all. I feel your frustration, we had an awesome Ped, then she left, the 2nd one got there finally after she realized I knew what I was talking about, then she left... we've been floundering since. UGH. More :grouphug: Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 21, 2013 Author Share Posted March 21, 2013 I didn't even hit the button once because I've never seen anything that "looks" like a seizure without a doubt. Since i didn't sleep with him, i didn't feel or hear any of his usual wiggling while he sleeps. I didn't mention ds's ridiculous lying. I'll ask him if he did something like brush his teeth, put away the dishes or whatever and he'll have a crazy tantrum screaming at me that he did do it. Then a minute later he'll giggle and say "fine, i didn't." He can't transition to anything without a tantrum. Most of his torso and tush are all rashy and i don't even know if it's bothering him. Quote Link to comment Share on other sites More sharing options...
celticmom Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 21, 2013 Share Posted March 21, 2013 :grouphug: Sending you some energy to keep doing what you need to do. Hang in there. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 21, 2013 Share Posted March 21, 2013 I'd be absolutely overwhelmed too. I think anyone would be. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 21, 2013 Author Share Posted March 21, 2013 Any lawyers or advocates here want to take dd's case? It's potentially worth quite a bit if presented well. (Half joking here). Thanks for the hugs and support. Quote Link to comment Share on other sites More sharing options...
Murmer Posted March 21, 2013 Share Posted March 21, 2013 I didn't even hit the button once because I've never seen anything that "looks" like a seizure without a doubt. Since i didn't sleep with him, i didn't feel or hear any of his usual wiggling while he sleeps. I didn't mention ds's ridiculous lying. I'll ask him if he did something like brush his teeth, put away the dishes or whatever and he'll have a crazy tantrum screaming at me that he did do it. Then a minute later he'll giggle and say "fine, i didn't." He can't transition to anything without a tantrum. Most of his torso and tush are all rashy and i don't even know if it's bothering him. I didn't push the button at all either. In addition they did not "see" anything on the quick peeks they took of the EEG during the stay. They didn't even read it until our follow up appt at which point they were back telling us she was having seizures and needed meds (whilst I was restraining her during a major meltdown). So please don't feel like all is lost if it is happening and it happened while in the hospital they will see it and you will know on the 2nd. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 25, 2013 Author Share Posted March 25, 2013 Dd's appointment with her primary dr is today. Hopefully I'm not thought of as crazy for asking for the EEG. It still bugs me a lot that it would be fine to get meds, but I'm a nut if I ask to r/o things first. I called a ton of lawyers, like at least 20. I have a meeting with 3 of them this week. Most of them were irritating. They wanted to know why dd is not being following by an MD (regular dr or psychiatrist) for her autism. Autism is not like that! She gets speech and occupational therapy and has a therapist to work on compliance, social skills, and coping skill. WTH am I missing here?! One of the lawyers understood this and I think I'm going to use him. The lawyer that quit waived his right for any fees to be paid, so new lawyer would be entitled to the entire allowed amount. I planned to go to NY this weekend for car repairs. My father said to just rent a car and go visit. I have sooooo much to do that this is now a wasted trip. Sure, the kids will be elsewhere, but I'll be twiddling my thumbs with nothing to do. Ds will be at his aunt's house and will NOT call me if he needs/wants, but will be mad at me for not knowing he needed me. Then we get to drive home Sunday evening and I'm sure there will be traffic. I despise drive home in the dark with our hilly, windy and dark roads. I've got to have my house inspection ready by Friday morning since we'll be away and inspection is on monday. Then we go to Philly the next day for ds's results. I'm really considering dropping outside therapies in favor of more consistency around here (therapies that have us out of the house). I have to order a tv stand (that small one that gets screwed on the back of the tv) because i somehow lost the old one. And dd had a friend over yesterday who is 3 years younger. I love that she has a friend but I hate the in-your-face social comparison that screams dd is far from typical. Ds had an allergic reaction (or hives from a virus) last night. He was playing nicely, then all of a sudden was a hyper nut ball with hives spreading across his back. Benadryl and a shower made him feel better and calm down. He passed out soon after and is fine this morning. I want a cleaning buddy. Anyone want to fill the position? You don't have to do anything, just keep me company. :) Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted March 25, 2013 Share Posted March 25, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
elfgivas Posted March 25, 2013 Share Posted March 25, 2013 i'm happy to be your cleaning buddy! where would you like to start? Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 25, 2013 Author Share Posted March 25, 2013 I have no idea! I can have the house cleaned in 2 days (1 upstairs, 1down), but it doesn't last. Slow and steady is never good because the kids are right behind me messing it up. The upstairs bathroom is clean which includes laundry. My room looks ok, but I have a few things I'm trying to get rid of that are just taking up space. Hmmm. I could clean ds's room. He's pretty good at keeping it clean. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 25, 2013 Author Share Posted March 25, 2013 It's the first floor that gets me. Main bathroom, kitchen, dining room and living room. We use these rooms all day long. They're clean, but very messy. I guess I could clean the first floor and let the kids have electronics. If it warms up this week, I can kick them outside (which is how I easily managed last year's inspection). I have to pick up the porch and yard, too, but it's cold today. Quote Link to comment Share on other sites More sharing options...
happypamama Posted March 25, 2013 Share Posted March 25, 2013 I'm sorry. I know you must be physically, mentally, and emotionally exhausted. I wish there was something I could do to help. For the vitamin D, these are the ones we take; they're inexpensive and chewable and have a decent flavor. Wish I could do more, but that is at least one suggestion I can offer that might take even a small amount off of your mind. http://www.amazon.com/Now-Foods-Vitamin-Chewables-180-Count/dp/B003OS9P4C/ref=sr_1_1?ie=UTF8&qid=1364221866&sr=8-1&keywords=now+vitamin+d3+chewable Quote Link to comment Share on other sites More sharing options...
happypamama Posted March 25, 2013 Share Posted March 25, 2013 Is there a huge downside (ie you see even worse behavior later) if you let them have electronics? With a deadline for an inspection, I'd probably just go for the electronics so that you can get the cleaning done. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted March 25, 2013 Author Share Posted March 25, 2013 Dd has no problem hiding out in her room with electronics. I've been unsuccessfully trying to limit content and time with her. So the downside is her increased behavior when away from those brain rotting screens! Lol. It's bad with her. Ds isn't so easily occupied. He'd still be looking to play. If he's willing to limit his creations to his table and under the bed, it would be perfect. I'll enlist their help today and tomorrow, but then have whatever occupies them on Wednesday and Thursday. I really wish dd was more willing and able to help more. (** my house is really not dirty or anything, but there's a new inspector this year and I'm not sure how picky he is. I have to temporarily move a bookcase away from an upstairs door. I have to make sure he can easily open all windows. Little stuff, but it can be a pain.) Last year I cleaned my kitchen first, but we ate crap for the rest of the week to be sure the kitchen didn't hold anything up. Crap, as in, grab a box from the freezer, microwave it, and throw everything out when you're done. We felt terrible by the end of the week! I'm not doing that again. Quote Link to comment Share on other sites More sharing options...
RemsMom Posted March 25, 2013 Share Posted March 25, 2013 I really think you deserve an award if the house is still standing and everyone is alive at the end of the day. I don't have 1/10th to deal with in my life but I am sure I would dissolve into a puddle of tears if I knew someone was going to inspect my house. Hugs to you. I hope things take a major turn for the better soon! Quote Link to comment Share on other sites More sharing options...
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