The first half...

Ok, so we weren't off to a good start this morning. I don't know if anyone out there has multiple children with RAD like I do...but hoo boy... CDQ has a touch of narcissm as well...and as soon as she saw any attention turning towards Poufy, she had to take it away.

It has to be all about CDQ good or bad or she's not happy. Somehow, her threatening Poufy ("Go ahead and talk over me and see what happens." ) not being ok when Poufy was trying to tell us CDQ was lying (which we already knew) was because Hubs and I don't like "them", we hate "them". Yeah...I'm still trying to connect those dots. So she had to spiral into a fake meltdown. I don't mind those that much because...well they are fake...so they aren't so bad. They never really end up going anywhere. It's just to switch the focus to her.

So, I tried to nip it in the bud. I tried to appeal to the ODD and told her if that's what it took for her to feel better about herself then it was ok for her to feel and think that right now even though it wasn't true...ok, maybe more passive aggressive than appealing to her ODD, but I will claim ignorance as I am still learning about it. lol

I called Poufy out and explained to her what CDQ was trying to do. Funny side: I heard Poufy on the intercom telling CDQ it didn't matter what she said because "it is MY birthday and YOU are NOT going to take it from ME." go girl! I asked her if she thought she deserved a b-day party. She told me she didn't know... I asked her for reasons why she thought she didn't deserve a birthday party...and to be honest... I should have documented this sooner because I've forgotten. lol I was more interested in why she thought she did deserve a birthday party. She told me that she thought she deserved a birthday party because yesterday and today she did tapping about behaving. I haven't done any tapping like that with them, but I guess she changed making good choices to behaving. I guess, if it works. lol She thought that was the only reason, which was sad to me. So I wrote her up a small list of some of the reasons why she deserved a birthday party.

Anyhow, I waited until CDQ was in the shower to give Poufy her Princess stuff. I didn't want CDQ being a snot and saying something mean because she's jealous. I wanted Poufy to have a moment if it was going to happen at all. Oh yeah, ignore what she's wearing, I was trying to find something that she could wear under the dress and still be comfortable.





So here are some takes from it. Most kids would rip into a gift but not her...you can see she doesn't trust. I thought it was funny that she liked the ballet shoes the most. I think you can also sense my hesitation...damn! I felt like I was ready to sprint off or something, you know like toss it to her and run! lol

I wish I would have recorded her when she ran off. She was on tiptoe holding the dress like the Princesses do. It made me cry. *blush*

I came to my room to tell Hubs what he missed (he's currently still stuck in bed for another hour.) and I heard her on the intercom. I rushed to record it because out of everything she got in that bag, she was reading my note to CDQ and I hope you can hear it because she is absolutely giddy and giggling over the note! I cried again. *burning blush*

I threw them all outside and I put a few streamers up in the kitchen. Nothing fancy, I decorated her chair with streamers too. Right now the house smells like a really good French Vanilla cake... I have to wrap her birthday gift still, but I think it's going to be ok.

So I caved a little...AKA preparing for a RAD b-day

Well, Poufy had her meltdown. It only lasted about an hour. There was to be no tapping, rubbing, karate chops, etc... just full on meltdown. I tried to appeal to her ODD but even that wasn't working entirely.

But you know what? I totally expected it. I was prepared.

As I thought about just cancelling the whole cake and presents and just letting the day go by as any other. CDQ asked if she could have a party (her b-day is feb. 29th) and invite some girl scout friends. I winced. I told her I didn't know because when birthdays came around they acted out and it was hard to tell.

This is what she said that broke my heart. "I know. I've been trying not to think about it so I won't mess it up."

Me: "Maybe you should think about why you feel like messing it up and try to change that."

CDQ: " I have. I just get really nervous and I don't know why."

Me: "Maybe you can practice rubbing and say something like: I am a good kid, I deserve a birthday party and my parents want me to be happy."

I know I probably could have come up with something better but I wasn't expecting this exchange and I figured I was still covering bases if one, she thinks that she's bad and two, thinks because of that she doesn't deserve it or three thinks that we don't want her to be happy or have a birthday party. And if I remember it's three things. lol

I told her I would have to see how things are going before I can make that decision. I was thinking that if I did allow her to have friends, we would have the party at a pizza place or something. Either it will work for distractions or it will be really embarrassing...

But anyway, back to Poufy, I got to thinking...what if Poufy felt this way too. What if she felt like she had to sabotage her b-day but secretly didn't want to? Is that what our kids feel or do they truly feel better if it's just another day?

The other part is totally selfish. I used to be the cool Aunt they really didn't see much of, almost like a Grandma. I always gave them what they wanted for their birthday or some other expensive present. I used to do that for family members always. The only thing is, I never realized that the kids never got to play with the things I gave them. Their mother never gave them the stuff.

For instance, the last thing I had bought all of them was Christmas. Each girl got a different Disney Princess Baby Doll and the boy got this bubble noisy lawnmower thingy (he was newly 4). I did see the boy play with the lawnmower. But the girls just looked at their dolls in the boxes. Turns out after I left, those boxes were put into a storage she never paid for and lost. They never even opened them! The only reason the boy got to play with his lawnmower was because she didn't want to hear him cry.

Buying presents for them is something I enjoy. I love going up and down the toy aisle and wondering what kind of reaction they would have if they had this or that... of course, I don't do that anymore. Maybe sometimes for some imaginary kids... but last night when I went to Target, I couldn't help but go up and down the toy aisles even though I already bought their birthday gifts.

I came across a Disney Princess Dress on clearance and I thought "Wow! This would go great with that Tiara and ballet slippers from the dollar bin... and so I made a selfish decision....

I bought them, plus the cute little felt purse I also found in the dollar bin. I rationalized...it's under $10 if she melts down and destroys it, it's not a big deal...but... if she loves it...than it's priceless right?
I folded it all up and packed it into the purse. I plan to give it to her tomorrow morning instead of her clothes for the day. I am trying to figure out whether I should try to sneak a picture or video of her when I give it to her. But I don't know which way it will go.

I also decided to pop into the dollar store and buy a couple of things. Some plates, napkins and streamers and some goody bags with princess related things in it. Not too much. I got the boy a pack of cars and a table football game thing for his "Princess" bag, lol Very minimal...no?

I'm nervous. That's why I am still up at 5 am. Maybe I should have her do some rubbing and tapping just to start the day? I was wishing I had a mini-tramp today but I decided I'm not going to introduce that until next month. I don't want to overload them.

Quiet

You know that quiet that you get when you can hear like a slight buzz or hum or just a tone in your ear? (could just be me, my hearing loss has gotten worse.)

That's what I have right now.

I should be happy...but I'm scared. I'm waiting for the other shoe to fall and I'm beating myself up about it because Dammit! Why can't I just enjoy it?

Literally... I am so afraid that Hubs health is going to turn or something will happen with the kids. I can't sleep well. I'm restless. It's making me grumpy and grouchy for what I feel is absolutely no reason.

Yesterday was perfect. Poufy has been acting out but it's to be expected. Her B-day is tomorrow. Since her and CDQ share a room, they've been at it together. But not even remotely like what it used to be. They are able to pull it together within the minute I remind them that they are headed off track.

I feel like running away and it's not even rational. I don't know how to stop it either. I've been angry at myself and telling myself to get a flippin grip already.

I. am. so. weird.

Yesterday I was trying to shake the mood. Thursday I crashed hard. I don't know if it was stress or exhaustion or both but I was just out and I felt awful. Hubs made dinner and got the kids to bed. I slept from 4ish until just before 8pm. The whole time I dreamt of the CSI commercial- Grissom's Goodbye. Just the commercial--A HISTORIC TELEVISION EVENT! LOL! I think it was my subconscious telling me to get my @$$ up before I missed it. I had been trying to make sure that I remembered it. *rolling eyes*

Since the kids started acting up, I've been obsessed with CSI shows, Law and Order- CI and SVU, Without a Trace, Cold Case. I wouldn't even watch any of those shows and now I make sure to catch the replays on Netflix and have even gone so far as to go back to the beginning of each shows season 1 and watch them all up to the current show.

Back to yesterday, I woke up feeling bad that I left everyone hanging so after I dropped the oldest off at school I decided I was going to make a big family dinner. I mean we eat together in the kitchen, at the table no tv... so it wasn't like that was a big deal. But I went out and bought a ham, stuff to make potato salad, and got to making the Pioneer Woman's dinner rolls. It took alll day! Seriously, I started at 8:30am and it was all done at 7:30 pm. Let me just say--PW's dinner rolls...MMMMMmmmmmmmmmm... I still have some dough left and I am totally going to make them today. They are so easy AND her pictures matched up with what I had EXACTLY. Don'tcha hate it when you follow a recipe and yours doesn't look a thing like what they are making and they don't even tell you how to fix it or why? Hmm...that's just me...oooookay...moving on...

Everyone loved dinner. It seemed to be more like a comfort food dinner. People were relaxed around the table. We played "I Spy". The kids were full and warm I guess because they hopped off, brushed their teeth and went straight to bed with out the usual peep! I am totally getting goosebumps typing that. My arm hairs are standing up...did I mention I am so.weird. ? My stomach just turned and I had to run off...T.M.I... for me it's more like W.T.F? I don't know what's going on with me. At first I thought I was sick, then I thought maybe my body is just finally reacting to the past 30 or so months of hell. Finally, I just don't know.

Anyway...on to Poufy's b-day party. I was going to do this big Princess party for her but as soon as I asked her opinion on it, she got excited and then started acting out. I figure it's because she thinks she doesn't deserve it. I thought about just doing it anyway... but then I thought maybe I should just progressively increase the birthday festivities each year with out letting them know. Maybe it won't be as noticable if I do it that way? You know maybe some streamers and a tablecloth next year, a blow up castle announcing it's a b-day the following year...maybe by the time she's 10 we will have some guests and a real party? I know I'll have to take it slow.

I did a full on birthday party the first year they were here for the boy (first kid with a b-day after placement). We had guests, games, a blow up Spidy they took pics with, etc... I'm still paying for that...he regressed further and continues to act even younger than he did when he first came at times. Seems to me, he thought/thinks acting like a baby (baby talk, silliness to make people laugh, hurting himself to make them laugh, etc...) is what made him deserving of that. Not just the fact that he's here and a great kid.

So, now it's been toned down. I will bake her a cake (she showed some signs of stress at the idea of a store bought cake and choosing one, which is weird because that's the way we've done it.) and I'm not going to do all that Princess stuff. I'm a little worried because I don't know if I will make her feel more at ease by not doing all that or if I will just reaffirm her belief that she doesn't deserve it. ARGH!

I guess we will see....

And now for something fun...

Here's the link in case it doesn't work.

Pressure Sores

This post is going to stray away from the kids and actually talk about something my husband is dealing with as a quadriplegic and that is pressure sores. Quads aren't the only ones who get pressure sores. Anyone can get them. Those who are more prone to get them are the elderly, those who are obese, and the bedridden.

Let me just say I am not a nurse or CNA or anything like that. I'm trained by my husband to meet his needs.

Borrowing from medterms.com- A pressure sore is a sore area of skin that develops when the blood supply to it is cut off for more than two to three hours due to pressure on it and lack of movement. As the skin dies, the pressure sore first appears as a red painful area, which in time turns purple. Left untreated, the skin can break open and become infected. A pressure sore can become deep (ulcerate) and extend into the underlying muscle. Once a bed sore develops, it is often very slow to heal. For more info, click here.


I'll just take this moment to explain how deadly pressure sores can be. Once they get going, they tend to tunnel and kill the tissue inside, with any little pressure it tears the skin or tissue open and keeps it from healing. They get infected easily because they are an open wound and if they don't have proper drainage that stuff collects inside and becomes a serious infection. Sometimes it will tunnel to the bone. Pressure sores can also lead to sepsis, which is when the infection gets into the bloodstream and the person can die. This is what Christopher Reeve died from.


I almost lost Hubs to a bad UTI that went septic while we were waiting three months for his urologist appointment when we first moved here. It was awful. At any rate, one might ask "well why don't they change position before this happens?" and the answer is because they can't feel it or they can't move themselves and have no help.

My husband has no feeling from the shoulders down. He gets something called autonomic dysreflexia(AD). He starts sweating, he gets red blotches on his chest and his blood pressure shoots way high. AD is not good, it can cause a stroke. AD can be caused by a crease in his pants. His body can't tell the difference between that crease in his pants and something serious so his body goes into hyperprotective mode and stays there until whatever is causing it is found and fixed. Not every quad has this and the levels of body response vary.

Hubs has never gotten a pressure sore on my watch, however he had scars from pressure sores (big mean bad pressure sores) from his past when I met him. Last summer, he was being fitted for a new seating system. This was a disaster. The man who came out to our house was trying to save the state a few bucks and ended up screwing Hubs over because the cushion he replaced his old one with reopened two of his pressure sores from the past on opposite sides of his bottom. Once those pressure sores are formed the skin is always compromised and it is easy for them to reopen.

The new seating system also started a sore on his arm. I'm happy to report the sore on his arm is almost gone. But the two sores on his bottom are still there. I think they would have healed mostly by now if we didn't have other issues interferring with their healing process but that is another story.

Another quad was asking about pressure sore prevention and care and I thought it might be good to share some excellent videos I found on youtube. I also didn't think it would hurt to share some info that most people wouldn't really have occasion to know about.

Here is the link to the first part of the video on youtube, there are 4 parts. If you are looking for something to give you a general overview and have dealt with pressure sores but don't know the semantics of it, this is a good video- Pressure Ulcers

For now, Hubs is staying off his butt as much as possible. He hates being stuck in bed, but what can he do? We clean out his wounds twice a day. The one that is tunneling has stopped at 3.5 cm and we pack it with this product called mesalt which is sort of like a tightwoven gauze with chemicals in it that are supposed to promote healing.

Hubs health is stressful on both of us. I think for Hubs the reasons are obvious. In my case, it's probably obvious too, he's my husband. Everyday, I can see him deteriorate. I know we are all dying every single second from the minute we are alive but I can see what would take others years to occur happening with him quicker and it scares me.

The other stressful issue is his family. I liked his family when we met. I thought I was going to get the family I never had. They all used to meet up at Hubs house for dinner and they would go places together.

As I spent more time with Hubs, I saw that everywhere he went he was basically a doormat, he would let people get away with a lot of things and I encouraged him to speak up for himself and I supported him and stood with him. Unfortunately, he had some standing up to do with his family. I was going to step out of that but he wanted my support so I silently stood by him and ended up being blamed by his family for his sudden change.

After that I saw through my rose colored glasses of a new family and realized Hubs needed to do what he was doing and it was a long time coming. I guess I gave him what he needed. He had depended on them for so long and had no other choice but to not rock the boat. Now that he had someone else to lean on...well...he went for it. lol

Even though his family was awful to me in the end, I still feel a strong sense of responsibility to them for Hubs health and care.

I know it is Hubs decision to keep them at the distance that he does. I know he has given them chances to reach out to him because of the guilt trip they tried to lay on him and I know that they haven't tried very hard and that hurts him. It confuses me because on one hand, I understand how he feels about them not contacting him via e-mail after their whole "we aren't ever going to see you again..." deal...but on the other hand I'm like Uh...you wanted them at a distance so how are they supposed to know anything different? LOL! I just try to stay out of it, yet still support Hubs decisions because he has his reasons.

But it still scares me because when Hubs does pass, I know they are going to blame me and I just don't think I am strong enough for that...

Keeping it real...

So things have been pretty good around here but I am going to keep it real also. There have been tears from the kids, anger, etc... The difference is they are using their tools.

Yesterday I had several proud moments. CDQ was unhappy that she broke a rule and lost reading privileges for the rest of the day. Usually she would go to her room, forgetting about the intercom and talk some major smack completely blaming us for her breaking a rule and having a consequence. Today we heard this on the intercom..."I am making good choices, I am making good choices..."

A short time later the boy got in trouble for breaking the rules. He lost toy privileges for the rest of the day (By the way, there are warnings that lead up to these privilege losses). He started whining and crying and it was going downhill quickly. Normally I would tell him it was nap time and that he needed to take a nap and he would go into full on meltdown. This time I tried to get him to do some tapping. He was doing it when I left him to help hubs with something and when I came back he was laying on his bed (like less than a minute later I was back). I told him he needed to get up and finish his tapping because it will help him feel better. He got up with attitude and was just standing there. I said fine, you know what? Go ahead and lay down, take your nap. Then he started crying and whining that he wanted to do his tapping , I told him he couldn't. So of course, he was going on and on until I walked away. Then he did his tapping and stopped the meltdown immediately. LOL (*doing the I-got-you-with-your-ODD-dance*)

At dinner, SS shared that she was angry with the boy because she actually got in trouble with him earlier. She was doing what he was doing knowing full well they were breaking the rules but she said she did it because he told her to. Suuuuure... She said instead of hitting him she did this flexing thing with her fingers on both hands and told him her anger was going to him and that it was just invisible. LOL! I thought that was very creative and great that she designed her own outlet.

We changed up the strong sitting today and what we say during tapping. I have them do tapping together. In fact, Sunday I could see CDQ crashing and I decided to let her lead tapping. I don't know if that's good or not but that instantly changed her attitude. So I was happy and so was she and all was right in the world.

They also started their gratitude journals today. I've read Lisa's blog from beginning to end and I am shamelessly taking her techniques and applying them to my kids. (THANKS LISA!)

Since the kids have been doing so well, I have been in a frenzy cleaning my house. Unfortunately, it's still not too noticable because once I clear out one area I bring in more boxes from storage. I'm determined to have everything out of storage by the end of the month so I won't have to pay storage fees.

Things are moving along...I have some post ideas brewing in my head about home and Hubs, etc... But I find myself spending computer time trying to catch up on blog reading rather than blogging. lol There are just too many good blogs out there! My blog reader currently shows 66 blogs and those are only the ones that have new posts or unread posts. Plus, I've been interested in going back to where it all began on some blogs. So if I comment from a week ago or 3 years ago you know why. LOL!

Yesterday

So yesterday...the kids were having such a great day that I was on the fence on whether to tell them what day it was. I was surprised every single one of them had forgotten, but I thought maybe it was a positive step? Who knows?

Lately the kids have been reminiscing on good times in OUR home. They always talk about the fun times with friends or bad times with their foster parents or bio parents and never anything that they have done here. I know it's not because of a lack of fun here. But like I said within the last three weeks the kids have been talking about some of the things that we've done as a family since their placement over 2 years ago. For me that was big. I don't know why, but it just seemed big.

Part of me figured if they didn't remember then maybe it was a good thing but the other part of me remembered the looks on their faces when two of them realized they had forgotten her birthday. It wasn't good and it didn't help that one of the ones who remembered was CDQ and she wouldn't let anyone else forget that they forgot. ARGH!

I decided to bite the bullet and bring it up over cupcakes after dinner. There were tears... all mine. I know such a wuss. I was able to steer it away and it ended in laughter and some interesting stories about Bela. Like how she could stick her entire foot in her mouth! and how her first word was "mine!"

I cried, not for Bela, but because as I looked around the table just before I told them, I saw their expectant faces, there wasn't an angry face, or a sad face or a blank face. There were smiles, wonder, each kid was *there* and was happy to be there and it made me cry because for the first time ever in my life, I was looking at family and it seemed like no matter how many times we might fall back, we will still always be moving forward...together.