Wednesday, February 29, 2012

"It's nothing special"

I just, literally just, heard the saddest words I have ever heard. Ever.

I'm sitting here trying to mind my own business and not listen to the conversation going on at the other end of the table but some things you just can't ignore. some things catch your attention no matter how hard you try to block it out and what caught my attention was a mother who was broken-hearted that Dad has custody and she's missing out on major infancy milestones. She's missing her baby and she's needing to talk to a friend about it. She lists specific "every day" things that she's missing out on and telling how it makes her feel and her friend's response...

"Oh, it's nothing special. you're not missing out on anything. Believe me."

Seeing your baby crawl is not that special? Hearing your baby babble is not that special? Seeing a smile on your baby's face? The first time she pulls herself up on furniture? The first time she takes a bite of baby food? The first time she stands alone or takes a step or says "Mama" or "Dada"? It's not that special? Really? Try not having it.

Is this really how parents of NT kids feel? Is this the way they see the "normal" milestones? If that's the case, who needs the sympathy and understanding here? NT parents who take "normal" for granted or the parents who know how BIG these things are because there is nothing normal or every day about our kids? Who do we need to spread awareness for? For our kids who are loved and celebrated or their's so they know to take joy in everything their kids are able do?

Bottle Breaking.

With my first kid, it was all guess work. He's like my guinea pig. He's how I find out how NOT to handle things. Well, not so much anymore. Now I have teenage guinea pigs to show me how to do it right with Walter. *hope* Anyway, with Walter and Alexander being so close together in age, I didn't learn my lesson the first time around either. Especially not with bottle breaking.

With Walter, I didn't take his bottle until he was 2 and when I did, I traded it for a pacifier. Yes, looking back it wasn't the brightest thing to do and a 3 year old walking around with a pacifier in his mouth probably would not be considered "normal" or "healthy". But neither would a 5 year old and Alex would probably still have one to this day if Daddy hadn't thrown a fit about it. but, he. liked. it. They both did. and it was so cute!

So, I did not want to make that mistake again. When it came to Goofy, as soon as the boy could hold his own bottle fairly well, I took it away and gave him a sippy cup instead. Day time/ night time, meal time/ snack time, nap time/bed time, I didn't care. that boy was NOT getting a bottle. Since he was so young (9/10 mos) he didn't know the difference and didn't care that I changed the way he got his formula.

Now, since that worked so well, I'm trying it out on Queen Victoria. She's almost 9 months old and she's able to hold her own bottle so we (I am) are starting out with a sippy cup at meal times. She didn't do very well at first because the sippy cup is a different shape than the bottle so the weight is distributed in a different way and because the "nipple" works a bit differently because she has to kind of bite down on it to get it to open up.
I bought these little non-spill proof cups from the dollar tree to show her the basics of how a cup works. Once she understood that (lots of messes but worth it), we switched back to the spill proof sippy cup and today she got it!
She drank a full 2 oz out of the cup at breakfast. I'll continue meals for another week or so before I stop giving her the bottle all together. Her parents may do differently but I think the fact that I will wash sippy cups (dishwasher) but will not touch bottles (hand wash) may help them along in the change.

Monday, February 27, 2012

Ok, here we go.

Let me try to think about how we got started this morning. Ah, it's only 1pm and it feels like it all happened so long ago!

Ok, so first we had to make sure we had all the paperwork together for the goofy child's kindergarten registration. Big Daddy was acting all ready to go, confusing me because his hands were empty. I asked where all the stuff was. "What stuff?" Birth certificate, shot record, mortgage statement... He said "You had that. I gave it all to you!" Uh-oh. That's never good. He knows better than to hand me important things because I will put them up where they won't get lost... the same way I lost Alex's IEP, BIP, progress reports, diagnostic reports and had to get all new copies only to find his folder a month later in a very safe place. Luckily when he handed me the stuff, I put it back where he got it because I was too lazy to put it up for safe keeping. So we head on out.

The first place we go is the high school to drop off lunch money for Thing 2 on our way to pick up Walter's trumpet that is now, and for the last time, fixed. again. I called the elementary school to make sure we had the right papers, to find out we forgot the mortgage statement so we have to go all the way back home to get it before arriving at the school 5 minutes late for our appointment. The first thing I did was ask to talk to Principal D because I have questions. Last year's, oh, wait. That was earlier this year. Whenever it was, the last time we tried kindergarten it went horribly wrong so I told D that Goofy has an appointment with a neurologist in late March to see about ADHD and Asperger's. The ADHD is a sure thing so I would like to look into getting a 504 plan set in place. She said that is definitely something we can look into. First we need to get a diagnosis. Once we do that, I contact the school and let them know what we are dealing with. Then I will get an appointment with the counselor. The new counselor. Because the one that gave me so many problems the past several years no longer works there- woot-woot. Anyway, D swears I'm going to love this new one. *fingers crossed* but, now that Alex isn't in that school anymore, I don't see a reason for problems *knock on wood*. After the appointment with the counselor, we will discuss where to go from there. It will involve some classroom observation so it won't be in place the first day of school. If he gets the additional diagnosis of Asperger's, we will look at an IEP instead of the 504. That's when Thing 2 called to tell Big Daddy we didn't drop off lunch money, we dropped off car wash tokens. Yeah, it's just that kind of day. We get him registered and head on over to see nurse N. N is happy to see us, wants to know how the boys are doing. We go through Goofy's papers and talk about different things. Then we got on the subject of the consult because, well, she's asking stuff. We talked about Goofy's sleep habits, his sugar intake, his eczema, and I remembered the question i got stuck on from the neurologist. They were asking about infancy and early childhood behaviors. the boy is 5 years old, how far does early childhood go? I don't know how to answer these questions because I don't know the time frame they want. From birth to now he went from one extreme to the other. She said she would use different colored pens and write a code out to the side assigning a color to an age then in the space underneath, write anything that could have changed in that time period. Smart lady! I love this school :)

So, we leave there to go over to the middle school. Big Daddy ran ahead of me. on purpose. so he could talk first. He's so freakin lucky I had to pee. We had a slight disagreement on who we wanted to talk to. He wanted to talk to a counselor he had dealt with frequently over Thing 1 when his sister died and I didn't want no stinkin counselor. I wanted someone IN CHARGE. I wanted the person in the highest position of authority I can get ahold of. I want this fixed, not smoothed over, not swept under the rug. I want results, damnit!! and I want them now. My boy is not going to be afraid to ride the bus, he's not going to be afraid to let his guard down in band and he is. not. going to constantly be watching his back. What the hell happened to Zero Tolerance? So, thanks to my need to slam back serious amounts of coffee fairly quickly and a bladder that has been forever changed by the birthing of 3 children, he won. We got the counselor. She was pretty nice. She's cool I guess. I was clear on the point that I told Walter to beat the hell out of that boy but he wouldn't do it. I told her if he couldn't get adult help, he needed to stand up for himself. I told her that both Walter and the neighbor boy said the bus driver saw what was going on and did nothing about it, I told her that was unacceptable. She said we couldn't know what the bus driver saw because if they are sitting in the back (which they do) with a bunch of bobbing heads in between and not an unobstructed view... Ok, fine. She had a point there so, fine. But still, this boy physically assaulted my son on at least 2 separate occasions. it needs to be fixed. Now. She called in Mystery Man. I'm not sure what he does there but he's familiar with this other boy and is handling the whole situation. Mystery Man took my confidence that these people could reasonably deal with the whole issue and shot it straight to hades. He said "Oh, yeah. I talked to Walter today. I asked him if it was still going on and he said it stopped." OF COURSE, it stopped. It was the weekend. OMG. He was surprised that it JUST happened, he was under the impression that this was an old issue that was just brought up. Lord, please, give me patience. Lady C says that she is very familiar with this boys' parents and if they knew this was going on, they'd put a stop to it quick. So, what she's going to do is call both boys down and tell them she got a report of an incident from the bus driver and get both sides of the story. Then she will talk to them and see what they can do to resolve the situation. She is going to let the boy know that she will call his parents. She has my email address so she will be letting me know what happens and they will definitely get this taken care of immediately. Effing mediation. But at least Walter isn't labeled as a tattler and the boys parents seem to be involved in his life so we'll try it and hope it works.

Then we came home to get the goofy child to go out for our weekly lunch date.

Sunday, February 26, 2012

OH MY HOLY FREAKIN HELL.

Oh, man today is not the day to be messing with me. I am so freaking angry. This is an angry post and I am going to try to watch my mouth but I'm not promising anything. This is horsecrap. ohmygoodness. Where do I even start?

How about let's start with the fact that 2 of my kids were up until 5am and the only reason they slept then is because I followed Autism Daddy's lead and dosed them with a 2nd round of melatonin. (Thank you, thank you, thank you!!! I didn't know that was an option until the conversation on your page. You, my friend, are a sanity saver.) I am freaking tired. and I haven't had coffee yet. and only because I have been blessed with Big Daddy, Mom, and teenagers was I able to sleep until 12. Then I wake up to a missed call and a voicemail wanting to know if we are going to the party. *instant rage* I know I'm going to overreact so I send a simple text message "no, we're not going." and she sends a text back "Is everything ok i have been trying to get ahold of you since early january."  *O.o* areyoufreakingkiddingme!? Is this an effing joke!? seriously? My blood is boiling. I am seeing red and I have dirty words flying through my mind like I haven't experienced since... ... who knows when. Very few people have the ability to totally piss me off like this woman. Still trying to be fairly nice while getting my point across, I send another text message because a phone call right now is so not a good idea... "I haven't had one phone call, one voicemail, one text message and not one single person said you stopped by." Then dumbass calls me and I lose my temper. Said some so not nice things then had to apologise. Told her about the boys being up all night and I. am. tired. and haven't even had my first cup of coffee. One of the things I mentioned is this lack of keeping up on their kid happens every. year.

***side note: If you don't want to be involved with your kid, deadbeat moms/dads, that is fine, totally fine, but do. not. pretend like you try so flippin hard.

She wants to know how things are going with Alex and me being cranky and petty because I had to bitch about them not asking for them to ask, I deliberately shock her into guilt. Well, in my defense, I only told her about 3 things that have happened since the last I heard from her. all of them this week. The failed trip to Hooter's, the bite mark and the diagnostic reports I'm reviewing for his IEP meeting- the fact that all of his scores are the lowest possible scores and the only reason he didn't score lower was because lower scores don't exist. Now, "if it's ok," they want to stop by after school tomorrow to see him. Of course it's ok. But I'm telling you all right now, if they lock him in his room one effing time to "protect" sister, I will flip the f*ck out. The gate is for safety, NOT to lock him up like a f*cking animal.

Saturday, February 25, 2012

Fighting the Green Eyed Monster

Today is another one of those "bad" days. I'm studying reports that I haven't read in a while preparing for an upcoming IEP meeting that includes a 3 year Review of Existing Data. I'm reading information that I have forgotten about and googling the parts that confused me or I didn't catch the first time around. Written reports, evaluation results can be rough. Then finding out what the information means can be even worse.

Normally, I ignore data and focus on my boy. He is so very awe inspiring. The person he is, the perfection of my child is something beautiful to see. Knowing I made this boy from scratch, he is mine and I have been so very blessed with the way he has developed into such a sweet, loving, happy child makes me feel indescribably thankful.

but then I read the reports and it's hard. I'm not sure what all of these scores mean so I'm just going to share some highlights.

Sensory                          moderate
Motor                             moderate
Attentiveness                  profound
Receptive Language       profound
Expressive Language      profound
Pragmatic/Social            profound
Speech                            severe


Interaction-Attachment       below 12 months
Pragmatics                          below 12 months
Gesture                               below 12 months
Play                                    below 12 months
Language comprehension   below 12 months
Language Expression         below 12 months

"His cognitive abilities are assessed below the first percentile which is consistent with prior evaluation results with scores based on no credit on most tasks."

"During these observations, Alex did not demonstrate knowledge of daily routines and expectations. He did not look when his teacher called his name, and he rarely made even brief eye contact."

"He has difficulty producing answers to questions, making choices between items both with regard to his wants and needs and in response to academic activity. Spontaneous speech consists of rote/routine verbalizations."

"during the adapted physical education assessment, Alex was resistive with an attention span that was short. eye contact was poor. During the physical education observation, Alex was partially participating in the activity with full assist from his aide. His skill level was below peer level. Alex could not follow teacher directives independently."

"In each setting, Alex demonstrated little interest in his peers. He watched objects rather than other students and often walked directly in front of others in effort to retrieve an item of interest. ... During outdoor recess, Alex played in close proximity to the other children but did not interact with them."

Even some of the good things they have to say are sad because they don't exist anymore. He doesn't sing along, he doesn't insert names of animals or animal sounds in Old MacDonald or any other song. He doesn't use his words to rush me along when he wants to do something "now, now""come on, come on". I know he hasn't just totally lost everything, he traded for new skills but it's still hard to read. Then I see a post in my "hidden post" folder from a mom who wants me to share a video of a mom having a conversation with her autistic child. I don't know how many people saw this post from Christmas Day, but I was celebrating my own conversation with my autistic son... Silent Sunday (Silent does not mean Absent). So, I go looking for this video and this is what i find... Mother and Child with autism have a conversation. Go watch the videos so you can see why I'm now fighting jealousy.

I know she worked hard for that conversation, I know it is amazing that he was able to talk to her like that. I know it's definitely worth bragging about and I do not resent her bragging what-so-ever. I am proud for both of them because I know what it took to get that far. They worked hard and earned the bragging rights. I love to hear you guys brag no matter what level your child functions on because I know that your road is no less difficult than ours, every boast leaves me just as proud of your children as I am of my own. I know the pride she had in her boy was just as strong as mine when we made these videos. I know I cannot compare my child to hers because all of our kids are different and all of our kids work harder than anyone I've ever seen to acquire the skills they have.

So, knowing all of this, why do I still have the struggle?

Friday, February 24, 2012

Fridays with Walter

So as you can tell this is friday and not wednesday and I changed the name. So it is close to supper were haveing my fav meal chicken yes finaly so I  guess I procrasinated so i dont have that much to say I will tell you my week so monday i didnt do much I started doing a menu in language regular s.s nothing interesting tues. same thing weds. same as tues. thursday: I STANDED UP TO MY BULLY w/ a little thanks to my frend thanks frend FRIDAY im happy the kid didnt mess w/ me no more :) that was FRIDAYS WITH WALTER

To lighten the mood a bit...

I have a family member that drives me absolutely batty. B*tch is always trying to one up me in everything!

The one that jumps right to mind is my own children. She seriously tries to convince my kids that she loves them more than I do and does more for them. I let that go for a while telling myself the kids know. They will eventually see the only reason she "does more for them" is because she's constantly throwing it in their faces that she does things while I just do it. I told myself actions speak louder than words so whatever. I let her have that one.

but then she moved onto my husband. trying to take care of him sooo much better than I do. Being all sweet and nice and *shudder* all the freaking time, saying I did this for you and I did that for you and cooking extravagant meals that weren't in the budget to prove she MUST be better because she can cook while I'm just happy to be able to follow the directions on the box so my kids don't starve and having him cook the things I'm not comfortable cooking because... well, I work hard all day with kids/house, well, you guys know what we do with our days so- hell, yeah, I'm accepting help when it's offered! I'm not an idjit. Well, no matter how much she does, it's something I don't have to do and there still one thing only I, his wife, can do for him so- I'll pretend to let her have that one.

Then the nieces/nephews. She HAS to be the favorite. and she is. She wins that one fair and square because I'm too busy to be the fun one. I play when I can but I do have things that need to be done.

Then she moved onto the house which was stepping into dangerous territory. That one was all smoke and mirrors and highly annoying aside from the fact that there are 2 things I'm good at- taking care of the house and taking care of the kids, you don't mess with that. I will not give up my hard earned Gold Star there.

Now, it's the caretaker/disciplinarian award she wants. Mom's been bragging about my potty training T.S. and how all I have to do is look at the kids or talk to them and their behaviors stop. They listen to me like they don't listen to anyone else. I can get them to do things no one else can without the fits everyone else gets. Well, today she came in and gave the 3 little ones fast food and demanded that they eat everything or they are not getting the toys and she. means. it. I had just fixed lunch and they were still at the table eating when she walked in! Now, how are you going to expect kids ages 5, 4 and 2 to eat 2 full lunches? and I didn't have to make any threats to get them to eat, they just did. Then she decided to take T.S. potty. She had just gotten a bath before lunch and used the potty. T.S. wasn't allowed to get up until she pooped on the potty. she already did! a massive poop! but I let it go. Take it. whatever.

Then I was sitting in the floor with Queen Victoria and she came walking up and tried to give the Queen a kiss. Every time she comes around, the Queen starts bawling. Today, the heavens opened and the angels sang, she didn't cry but she ducked the kiss and started trying to scramble to get to me... I WIN!!!

I don't even know.

Today, I'm getting dressed and putting my war paint on but not in the same way I do to head to Alex's school. Today, I am headed to Walter's school and taking no prisoners which means I don't need to feel pretty or capable. I need my @$$ stompin' clothes. Which would be my every day outfit of hoody, jeans and sturdy shoes. The clothes that help me feel the 4 c's- comfortable, competent, confident and in control.

aaaaand, fast forward 1 1/2 hours later, I am not a happy mama. I decided to go to Walter's school first because it's usually easier to catch the principal in the early morning moments except this principal was already in a meeting, the assistant principal was out for the day. Which left me leaving a message with the office staff about what was going on. Don't think for a second I'm leaving it at that. If I don't get a phone call with a solid plan to fix this TODAY, and I'm not talking the mediation BS that will just label my boy and the neighbor boy as tattle-tales and cause the bully to just hide his actions a little better and use stronger threats, I will be back up there first thing in the morning and will sit there all-flipping-day if I have to. and the day after that. and the day after that. for as long as it takes because this mama has nothing but time on her hands. I want this fixed now and I want to know how they are fixing it.

Then we headed to the doctor for the "best" news I've had in a while. Let me just say this so you can understand how quickly these thoughts ran through my head... my house is a 60 second drive from Walter's school. Leaving Walter's school, passing back by my house and going to the doctor takes maybe 3 minutes (probably not even). Leaving the doctor's office and going to Alex's school is a 7 minute drive. Everything is right here close. So, we go to the doctor's office and I tell him this morning (after I got Alex up) I'm feeling pretty stupid for making the appointment because his arm is bruising but I just want to be sure it's not ringworm or impetigo (since he just had impetigo on his nose, today is day 10 of his meds) and yes, it's a bite mark. Such a relief.

We leave and I call Big Daddy who is freaking. He says "but our kids wouldn't bite!!! Maybe each other but not him!" I had to yell into the phone to get him to shut up and listen- no. not our kids. They didn't see the "rash" until 2:30 yesterday so it had to have happened at school. At this point I go from jumping-happy that it's nothing contagious to the understanding it's a kid thing, sh*t happens and kids are unpredictable. especially in the school Alex is in, and most of those kids don't do things just to be mean, it's usually retaliation, a reaction instead of an action.

Then I started getting worried. We need to figure out where this happened. He has a 1:1 aide, how would they have not seen? Maybe it was on the bus, I love his driver and judging by the way he wants to rock in her face and gaze adoringly at her every morning, so does he. His bus aide worries me a little, she seems kinda snapish but, no. It's clearly a child's mouth. They changed the bus route to pick up another girl first, could she have done it one the bus? School says he sits alone. Yay for that.

Then I'm REALLY worried... could he have bit himself? like that? to leave a bruise? I don't think I could handle that.

Full circle to it happens with an addition of  we need to figure out what happened to see what to do about it. I'm praying another kid bit him.

We get to the school and I take him in, tell them it's a bite mark. They are horrified. They are flipping out trying to figure out what could possibly have happened. They can't believe it, they are soooo sorry! No! It happens, I know that, I'm not worried about that. I just want him watched to make sure he's not biting himself since he's been chewing his toys lately. Leaving the school, I was feeling better because maybe it happened on the playground yesterday.

The 8 minute drive home, however, I'm back to serious worry. What am I going to do if he's biting himself? How do you protect your child from himself?

Thursday, February 23, 2012

Being a grandparent

Sitting here feeding Queen Victoria and I'm thinking being a grandparent is feakin hard, man!! It's harder than just being a parent because you have to be a parent to the parent as well as a grandparent to the baby.

I keep saying the perfect revenge for being a parent is being a grandparent because now your child is going through all the crap you went through. Being a grandparent means you get to spoil the heck out of the kid and send it back to the parent. Being a grandparent means it's now your turn to be "perfect" and it's your child's turn to never do anything right. It's your child's turn to be criticised by their child while you are safe and secure up on your pedestal where no one, especially not your child, can knock you off.


What I didn't know is that you are just as unsure of what you are doing as you were parenting your own kids. Or that you still feel the need to parent your own kids. This one is difficult for me because although Thing 1 is a parent himself, for another 61 days he's still 17. I have a feeling this feeling will not magically disappear on his 18th birthday. What about when (if ever) he moves out? Will it change then? I don't know, but I doubt it. So, when do you step in and say- listen. When do you back off and let them make the same parenting mistakes you learned from yourself? How much do you help them and at what point does the helping turn into doing it for them? Is the "helping" going to interfere with them learning to be a parent themselves?

I'm hoping this just a new grandparent thing, like being a new parent, where it gets easier with each additional grandkid like it does with kids.

Wednesday, February 22, 2012

You asked, I answered.

You asked *repeatedly* about family. Your family doesn't understand, you don't know how to explain, they aren't supportive, they don't know how to help... the list goes on. In some cases you have tried to talk to your family with little or no success. You ask what can I say, what can I do, how can I help them help me? My answer is I don't know.

In my blog, I talk constantly about *my* family but what you may be missing is it's not my family I'm talking about, it's Big Daddy's. and only a select few. like an elite squad. Big Daddy is one of 7 8 (sorry, I forgot one. Sorry, Pretty, Pretty Princess!!) kids. I am one of 4.

I love my family. They are ... I could give a bunch of words with some really great definitions to describe them but none will come close to I love them dearly. I miss them desperately. I haven't seen my mother in almost 3 years, my Dad has been gone longer than that. I haven't seen my sister in a year, my baby sister's visits are sporadic. My Dad's family, ah, my heart aches just thinking about them- they are an amazing bunch but I haven't seen any of them in about 3 years. My mother's family is scattered all over the world. The only family contact I have is my brother. We have texting, we have facebook (I get all family news through facebook) it's not exactly the same as seeing them face to face, you know? But I'm happy to have any communication. So I can't tell you how to deal with your family.

Big Daddy's family is about the same. We see only one of his sisters and that's rare. Her kids come to visit, we have another sister's kids 50% of the time but that is only because one of her kids also belongs to my brother. and of course, his sister has to come along because we like her :) Then, again, with the texting, facebook and phone calls. Big Daddy does phone calls, I don't. I hate my phone.

I can give what advice I have with no promises. I can tell you you need to be specific in your requests. Your family loves you and they do want to help, to be supportive, they just don't know how... I'll use Thing 2 as an example. I cannot tell him "Go do your laundry." if there is someone else's load in the dryer. He can't get past that one step. I have to be specific. "Go get the clothes out of the dryer, put them on ___'s bed, take your basket back with you, then do your laundry." Don't just tell your family "I need help.", give them things they can do for you...
1. I just need to talk. I don't need solutions, just a shoulder.
2. Can you come sit with the kids while I relax in a bath *or whatever you want to do* for this amount of time to give me a break?
3. I need out of the house, can we go do something?
4. I need company but can't leave, do you want to come hang out?

You do need to understand, they are not responsible for your kids, they don't have to understand all the details. If they are not comfortable watching your children on their own, they shouldn't have to feel bad about that. You can be considerate of them, and offer a compromise. Find some sort of middle ground where you both are comfortable. A place where they can help without being overwhelmed.

There are a lot of things they will not understand because they don't live our life, they don't raise our kids. What they do need to understand is this is YOUR child. They don't get a say in how the child is raised. They don't get to tell you all the things you are doing wrong because there is no such thing as a perfect parent anyway. Let them know politely that you know what your doing. Or at least have a vague idea of what's suppose to happen.

Ok, I'm going to use my failure to take my own advice here. I love *Family Name* gatherings whether it's holidays, reunions, just getting together... I love hanging with the family but I can't take Alex. I can't take Alex because I have nowhere to take him to calm down when he freaks over the noise/crowd, there are no quiet rooms. I can't take Alex because he's a runner and there's always a chance he will escape- there are no fences, no enclosures of any kind and part of what gets him all riled up is he wants to play but I'm afraid to let him because the boy's quick. I can't take Alex because there are many, many small children there who function on or around the same level Alex does which means they have the same interests, want to play with the same toys etc and Alex is much bigger than these kids and can hurt them without meaning to. and since I am so focused on Alex, I can't watch my other kids and definitely can't visit with family. Alex ends up a meltdown-y mess and Mama's right along side him. It's horrible. But, if I was to ask for a few specific accommodations, my family would be happy and eager to help. I have trouble asking for help because these are my kids, my responsibility which ironically, is not how this family functions. They use the village method.

This may sound cold but you need to decide what's most important to you. Are the negative comments bad enough to stay away from these people? Are you being reasonable in your requests? Is the issue something you can just ignore? Is there something you can do to fix it? Your family is not going to be perfect. People are going to say things that annoy you, they will be insensitive at times, they will make well meaning remarks that will make your blood boil but are you never guilty of doing the same? Weigh the facts and decide what you have to do for you and your kids. The fact that you are asking in the first place tells me that you care about these people and you want to fix the situation in any way you can. That's a good start. Have you asked them?


Tuesday, February 21, 2012

Alexander.

I'm still having trouble figuring out my laptop and cannot for the life of me upload a danged video. So, since my blogger never changes, I will put him here. These videos were taken earlier today...


video

video

Back to normal.

Ok, Vacation's over and we're back to the everyday everyday. I'm loving it! I tried being lazy and blowing off as much of the unnecessary work as possible and I am so very glad to be back into the routine of a weekday.


It started at 5:30 this morning. My alarm went off and I hit snooze. The 2nd time I hit snooze I worried that my alarm would wake Big Daddy and reset my alarm for 6:30. When I got up at 6:30, I realized Big Daddy wasn't even there, he went to work this morning. I went to get coffee and the coffee pot was full, that's never a good sign so I went to wake my brother, who overslept, up for work. Thing 2 was standing at the front door waiting for his bus and I had 15 full minutes to drink coffee and play on facebook before Goofy followed me. He seems to sense when I leave the bed. He doesn't like sleeping alone and will not stay there long after everyone is gone. Soon after Goofy was Walter. I don't have to rush to get Alex in the morning anymore because his new bus time is around 7:50, 20 minutes later than before. However, this extra 20 minutes I have now, that I thought would be more time to gather myself in the morning is now being spent helping Walter create his new faux-hawk because he has to be sexy and stylish like that. Getting Alex's stuff together I saw this...

I can just see the cavaties forming.


and that's why I obsess.

I get Alex up and head for the shower. As soon as I got him good and soaped up, Goofy decided he had to have his teeth brushed right then and there. Since I couldn't stop with Alex, and he refused to accept "wait a minute" as an answer because a minute is a "loooong time!" Walter helped him until I finished Alex. I brought Alex to the kitchen to finish getting ready and Walter loaded the brush your teeth song on the laptop.


 I got him dressed and Walter started with the Sesame Street Youtube videos. I'm loving this laptop! Alex stayed close, didn't try to bolt, didn't throw food or his cup, didn't pick the cat up by his fur and sat with BOTH of his brothers quietly. Yeah, they all spent time together doing the same activity! When it was time to wait for the bus, I told Walter to get rid of Sesame Street NOW because if Alex can hear it and not see it, there will be some serious butt whoopin going down. Goofy wanted to watch the Annoying Orange but wanted to do it all by himself with his sticky gum-slobber hands. Walter did not want sticky gum-slobber hands touching him or the laptop they are not suppose to be touching at all so a fight broke out. Thing 1 got up to get ready for work right about then, Mom and T.S. came up the stairs and Big Daddy chose that second to call so the whole world missed the awesomeness of the previous moments.
Big Daddy was calling to let me know the guy didn't finish working on our furnace yesterday and will be back at 8:30 instead of 10:30. Nice. mid-way through the phone call I had to use the threat all my boys know is serious business- "I freakin swear, if I have to walk away from your brother..." I've not *so far* had to decide what I would do but it would not be pretty. That let Big Daddy know this was getting serious so he hurried to get off the phone.

Once Alex got on the bus, I got the others under control. Took T.S. potty, brushed her teeth then got busy on the kitchen so the guy wouldn't think we lived like slobs (pretty sure the quick cleaning isn't fooling anyone.) Walter left for school and I heard a baby cry. Check calender *hang head in defeat*  A little bit later, Thing 1's girl comes into the kitchen with Queen Victoria. ...I was wondering if you could watch her for a few hours... *raised eyebrow* she says "I know, I know!" (while sneaking a look at the calender as if the memo could suddenly appear so she could say she wrote it down) "I wasn't sure if I had a babysitter. I was waiting to hear back from so-and-so."

The furnace guy shows up (always punctual... haven't decided if I like it when he's punctual when I find out about the appointment an hour before his scheduled visit). I had a few phone calls to make, a calender to update so I did all that before I started on the bathroom and bedrooms. Then he needed help with the thermastat and stuff. The kids played in the kitchen floor with the baby while I took care of the things I had to do. I think I like having the baby's play area in the kitchen a lot better than the livingroom because most of our family time takes place in the kitchen. It's like the communication center of the home. Where we spend time together and it just feels right to have her here. And Big daddy likes that I am now OCD-like cleaning the kitchen so Queen Victoria doesn't choke and die.

The Little Dementor slept until about 9. I love that he's all for snuggly time when he first wakes up. The Pretty Pretty Princess wasn't too far behind him. She's been here for a few days now, not too sure where that's headed but she's a sweet girl. she can spend whatever time here she wants. I think she misses her Mom. Mom raised her until circumstances happened after "Dad" died. That's Big Daddy's Dad.

Anyway, it just feels good to be back to normal. Everyone seems to feel much better now. The kids are calmer, there have been minimal disputes over computers and toys and even better, since I got all my work done this morning instead of working slowly throughout the day, I get to keep my promise and let the little ones "swim" in a tub full of balls this afternoon! woo.

Monday, February 20, 2012

A sure sign that spring is coming.

It's that time again, came a bit earlier than expected. The other day I had an inner debate going. Should I call Daddy to cut Alex's nails or find another way to get it done? I haven't heard from his Other Parents since before he went back to school after Christmas break. It's been a nice vacation because I'm not getting 5am or 11pm phone calls or all the hours in between where I am expected to drop what I'm doing and hang on the phone like a school girl giggling over different things. That last sentence may be unfair but I hate talking on the phone, it's a waste of time when I have so many things I could be doing instead. So, I asked Big daddy what he thought. If I should call daddy or if he could do it for me. He said Ha! I wouldn't call, it's just going to start stuff. So he said he would cut them for me.

Every year I have the same time line. Christmas through late Feb/early March I don't hear anything. Then I won't hear any more until Late May. Then summer-fall it's a 24/7 thing (no exaggeration). This is how I knew I would be getting a call soon. This morning Big Daddy asked me if I'd heard anything yet. I knocked on wood and told him not yet, sis's birthday isn't until the beginning of March. Then I come back upstairs to 1 missed call, 1 new voicemail and a text message. 10-10:30pm, this woman was desperate to get a hold of me... because she wants to invite us to a birthday party.

and this is where we start having problems. After 8pm I do not want phone calls. If I get a phone call, someone had better be broken, bleeding, missing, in danger or involved in some sort of property damage. I get up before 7am. From the time I get up until the time I lay down, I do not get down time. I eat my meals standing at the kitchen counter so I can get done quickly while still taking care of the small humans. I do not sit down to watch TV, I hover over my computer to make quick updates in between what the kids are doing online. I literally don't get to stop. At 8 all my kids better be in bed, on their way or other parents need to take over. This is my time. I watch my DVR'd shows, I eat junk food, I hang out with my husband and smallest child and I do not want to be bothered. Even by my kids. If I am in bed, my light is off, you better have a damned good reason for barging in. and Especially by a ringing phone.

As for morning... I have been taking care of my kids for a good long while. They do not miss school because I oversleep (Well, Alex did once but that's a long story). I know exactly how long I can sleep. I do not need 5am phone calls to tell me what time it is. I do not need repeat phone calls when I ignore your call. That can get dangerous.

So anyway, I haven't bothered to listen to the voicemail yet- I will but not right now. The text says there will be a birthday party on a Sunday at a popular kids' place. *read: small children* I have not gone in years and no surprise, I will not go this year. There will be a whole big thing about it because it's Alex's sister. They "can't handle" Alex with his sister alone at home but think I want to try Alex with both of his brothers in a place where there are tons of small children and I can't follow Alex up to see what's happening? Yeah, right. The whole big thing will end when I tell them they are more than welcome to come and get Alex themselves and take him to the party. Then I won't hear anymore until Alex's birthday May 25 where I will argue against having his party at a popular *small children* establishment, tell them they can do it if they want and end up having the party at home with thousands of family members.

Saturday, February 18, 2012

Vacation Update: Vacation Weekend


Today is Saturday, the first day of the weekend. I got up around 9 and walked into the kitchen to see Thing 2 and the 2nd Musketeer playing with the baby at the kitchen table. (Ah, I keep forgetting my alarm clock is 30 minutes fast so it must have been around 8:30.) This baby is here a lot so I think I need to name her. I shall call her Queen Victoria because there is no way she would accept a title as lowly as "princess" anything. So, anyway, I pass them up to go smoke and pass Walter, L.D. and T.S. in the livingroom on my way to finding Mom and my brother in the garage. I come back in to get some coffee and have to wait for Thing 2 to finish making tea. The Tiniest Supervillain was wanting her teeth brushed and Walter was trying to tell me something but I can't remember what it was. I do remember telling him to wait until I had coffee to talk to me. Alex was in his room watching TV totally naked.
video

So Walter ran downstairs to get an outfit while I put a diaper on him. I walked away to get the clothes from Walter and turn around to see a naked boy. For a minute I couldn't remember if I had put a diaper on him and took a few seconds to consider. I know I did! The T.S. had to show me all of her fancy big girl panties, including the one she had on. I set the timer for 10 minutes and got Queen Victoria some oatmeal, bananas and pears. Mid-way through feeding her, T.S.'s potty alarm went off so I rushed her to the potty. She didn't go but she's still dry. I go reset the timer and finish feeding Queen Victoria. Get her cleaned up, hand her off to her daddy and tell him I don't know who got her up so I don't know if she's been changed.

 
He goes to get her situated and I take T.S. back to the bathroom. Still no go, still dry. I tell her if you pee in those panties, you will not wear them so I suggest you use the potty. She seemed sufficiently threatened so we washed up and headed back to the kitchen for the tooth brushing train. Brushed T.S.'s, brushed L.D. and hollar for Goofy. I can't find him anywhere so I start asking. He went with his Daddy to get the parts for my car. I didn't even know he was gone!! That's bad. So I put his tooth brush up and go smoke. Come back to take T.S. potty, get Alex breakfast, put his clothes back on and restart his movie. T.S. wants a bath. I told her I need to finish what I'm doing and I will give her a bath. She says Ok. hm. that was easy.

Then Walter comes in crying. Thing 2 hit him with a ball and gave him a serious wedgie. So I go out to tell Thing 2, yet again, to keep his hands to himself. He wants to start his teenage hormone driven you're not the boss of me BS so fine. Grounded. No leaving, no company. Goodbye, 2nd Musketeer, we will see you Monday. "He doesn't have to leave!! You can't ground me! I'm leaving." Good luck with that. I call Big Daddy for back up. He's on his way home. Once that's taken care of, I go get Walter. I have 2 witnesses willing to testify that Walter threw the first ball. Grounded. No TV, no computer, no video games. g-r-o-u-n-d-e-d. I don't want to hear "buts" or "because". grounded. and that's the end of it.

Take T.S. back to the potty. Come out to find a quarter sized lump of play doh in a pool of vomit beside Queen Victoria in the living room floor. Dude! You cannot just sit your baby in the floor. So I tell T.S. again that the play doh is ONLY allowed at the kitchen table and if it leaves the kitchen table I will throw it away. Thing 1 takes his baby while I clean up the livingroom then he goes back out to help his dad fix my car. I tell Goofy to come brush his teeth. he doesn't want to. too bad. I drag him in, get his toothbrush ready and turn around to an empty room. Where the hell did my kid just go!? Go find him, drag him back, brush his teeth and send him on his way. T.S. still wants a bath but I need a break first.

and then it's 10:30 am.

and I just spent an hour putting Goofy in a 5 minute time-out because he and the Little Dementor were fighting over a toy. Toy fight rules- you fight over it, it's mine. Goofy does not like this rule and wants to scream at me that it is HIS toy and I can't take it. *raised eye brow* wanna rethink your yelling at me? more screaming = time out. On the upside, now I have the living room, the entry and 1/2 of the kitchen done! woo. Gotta go fix lunch.

Friday, February 17, 2012

My secret to happiness

Roll with it. Sometimes life sucks. Sometimes bad things happen. Sometimes people disappoint you. I have a picture in my bathroom that says, "it takes both rain and sunshine to make a rainbow." I love this because it reminds me of this truth in life- without the bad would you know the good? Without something going wrong every now and then, would you really appreciate when something goes right? Without tasting a lemon, would you be able to savor how sweet the strawberry is? The bad things probably aren't as bad as you are thinking they are, you just can't see the full picture at the time. When you look back at your problems they never seem quite as bad as they felt at the time.


Find something to brag about. As bad as things can be, they can also be that good. Let's use today as an example. Hooters. Yes, I take my boys to Hooters. because I can. and because I don't see anything wrong with it- the girls are serving food, not dancing on poles and they are more covered than the girls we see at the river or walking the halls of the local mall. How your kids turn out depends on what you teach them, not what they are exposed to. Sometimes you need a little exposure to use as an example for a lesson. Anyway, not the point. The point is, it was loud, chaotic, busy and EVERYONE was moving. Alex freaked. I had to take him out to the car twice. Once to calm down and once admitting defeat and getting him out of the situation until the food came. It was horrible. and embarrassing. But here's my bragging point... Walter stepped up. He recognized that we needed help and took over entertaining Goofy while Big Daddy dealt with the baby. We didn't ask, he knew. So even in a bad situation there's always a silver lining.

Find the humor. Seriously, if you can't laugh at your problems... what's the point in having them? Oh, LOL!! Here's one. Thing 1 and his girl's bickering drives me absolutely insane. I just want to scream and cry and knock their heads together. But, I can just sit back and giggle to myself because most of the things they argue about are flat out stupid! They are "problems" that I can look at in my own past and wonder why in the heck they got me so worked up, it's not that big of a deal. The other ones that aren't so giggle-worthy are still comical in a sense because they reenact arguments I have with Big Daddy word for word. Serious. It's my silver lining.

Wednesday, February 15, 2012

Thing 1

Goofy wanted to see Thriller again, the other one- NOT the Annoying Orange one. So I put it on for him then went to tell Big Daddy that Goofy's addicted to Michael Jackson's Thriller. Thing 1 said great, now he can grow up to be a pedophile. That started a discussion on if Michael Jackson was really guilty or not and what that had to do with the video and his music. Big Daddy defending him (if he was guilty, which he doesn't think he was) said that MJ had a bad childhood, his father blahblahblah. I said bullsh*t. That's a cop out. Your childhood does not determine who you are as an adult, you are responsible for your own decisions. Everyone had a crappy childhood.

Thing 1 says well, his daughter won't have a crappy childhood. I started laughing. I told him oh, yes, she will. I told him everyone has a crappy childhood, no one likes the things their parents do. That's where you get your start on your I'll never list. I'll never do this, I'll never do that and I so would have handled this situation differently. Then you have your own child and realize no one can be the perfect parent and by the time you hit your 30's you start realizing why your parents did the things they did and you don't blame them so much anymore. He said

***drumroll***

"Ha! I'll always blame you guys. You know why? Because I choose my actions and I make my own decisions." (making fun of what I said) The awesome part- I get to be one of the parents who get the blame for how the child turns out!!! woot-woot!! This has to be right up there with when he brought his week-old baby to the kitchen sink where I was standing and said "look, baby. There's your bitch of a Grandma!"

So, I get to be parent AND Grandma!! Huge strides, people. Huge strides. Puts me in the mushy/sappy mood to send him the "I don't like you." text just so I can be reminded "yeah. I don't like you either."

Tuesday, February 14, 2012

"Vacation" Update...

When does the vacation part of vacation start!?! IDK for sure what today is but it hasn't been much of a vacation.

So far this week-

Got the living room re-painted.

 we're talking IEP- and you all know what that means, I need to know every letter of this paper and his past diagnostic reports and his BIP by April 25... study study study.

Goofy had a dentist appointment and a new one scheduled.

Alexander went to the doctor because he had a disgustingly runny nose and a rash around his nose... turns out to be impetigo. because, of course. and he can't go back to school for 24 hours. Luckily, his appointment was at 8:45 so he'll be good to go by morning. At this doctor's appointment I found out I need a consult appointment for Thing 2's ADHD, a check up for Walter's ADHD and I get the name/number for a neurologist to see if Goofy's ADHD or Asperger's.

Call the neurologist to hear I need a referral. Call the doctor to tell them I need a referral, get set up, tell Big Daddy then ... uhg!!!... why is it, all this BS you all keep hearing from strangers, I hear from family? seriously. This is horsecrap. Big Daddy thought I was being ridiculous about the ADHD until he was sitting in the waiting room today waiting for me and Alex and picked up an ADHD pamphlet to entertain him. He was blown away that Goofy meets every. single. requirement. really? ya think it fits? hm. imagine that. He still doesn't believe me about Asperger's- thinks I'm just being paranoid (which is possible, and I would jump for joy if I was, but I want to hear that from a doctor) but he won't dare say that out loud again. Thing 1's girl however, hasn't quite learned that lesson. She has, on the other hand, seemed to learn that where I look after you say something stupid tells you how deep of a pile you just stepped in. If I give you a "dumbass" look then tell you what I think- you're ok. If I look at Big Daddy, take a deep breath and just walk away... it would probably be best if you didn't follow me trying to "fix" it. So, anyway, I have a few days before I hear back from the referral center, then I will get an appointment.

I went out to check the mail a bit later and got a request for a 7th grade physical. yeah, I just said that- 7TH GRADE. How did that happen!? Where in the heck did the time go!?  So I call the doctor again- I just need to bring the form when we go in for Walter's check up. and I realize, they are getting ready for next year. *sigh* I call the elementary to see if they have information about kindergarten registration and end up with an appointment to register Goofy. :/

In all this, the house is still weekend-like trashed. I haven't had time to do hardly anything. well, kitty litter, dishes and 1/2 of the kitchen. This man needs to go back to work so I can get back on schedule :) I'm tired of our vacation, it's too much work.

Sunday, February 12, 2012

God, I love that man.


I know it's only been a few minutes since I said I probably wouldn't be able to write much this week, and I probably won't only because I am looking forward to having this man all to myself for an entire week. This is my favorite picture, it sits on my night table so it can be the last thing I see before I go to sleep and the first thing I see waking up. The only other thing on my table is a picture of my baby sister and some pretty (fake, but pretty) flowers and my alarm. This is my feel good table to start my day right and the best way to start my day is seeing my husband and remembering the most magical day of my life. On my desk, sitting right in front of me so I can see it at all times, is a picture of him, his dad and his sister taken the first day we met- June 16, 2007. 

This song, If there hadn't been you, is our song. In the song, it's a man singing about the difference a woman made in his life and while the song could apply to Big Daddy considering we both went through hell that first year, I chose it for the difference he made to me, I'm not sure why he agreed to it. 

June 16, 2007- My brother married Big Daddy's sister. Oh, what a wonderful day :) It started the night before. The wedding was 3 hours south of us so most of us went down the night before. We stayed at his parents' house, that's the night I met Mom. I was sitting there talking to her and she was telling me about this wonderful son she had- he was soooo handsome and he was a single father to 3 of the most wonderful grandchildren to grace the face of the earth and blahblahblah. Now, let me tell you, the last thing I was interested in was a man. I had rotten luck and 3 kids to raise. I wasn't looking for anything resembling a relationship or any sort of fling. I was polite and didn't mention that I was so not interested. The next day was a whirlwind of activities- decorating the park, the church, getting people dressed and fixed up... That's where it happened. I was kneeling in the floor helping the bridesmaids when something made me look up. I looked up into the most beautiful eyes I have ever seen. I was smitten. No way in hell I'm admitting that, just leads to trouble and I've had enough. So I look away and go on with what I'm doing. The whole time I kept sneaking looks at this oh so handsome man but refused to acknowledge him openly. That didn't deter him :) I went outside with my dad and my sister and a few other people to help vandalize my brother's car and he followed us out there. He spent some time talking to my dad making sure to stay close but not obvious. He was so comfortable talking to strangers, so open and friendly. He was the exact opposite of everything I was. After the wedding, we all headed to the park for the reception and he "just happened" to sit next to my group. He asked about different people from my family that were there, talked to me about the pictures I was taking, he talked to Goofy and made a big fuss over him. Next thing I know he's asking if he can hold the baby and they disappear. I followed them around as much as I could while still getting the pictures I needed and participating in the celebration festivities. As soon as I knew he was safe, I let them play and just kept a distant eye on them. The entire world was set on getting us together. Mom the night before, Goofy pulled my shirt down at the reception to expose me to anyone close enough to see then after the reception it was suggested I follow Big Daddy back to where I could find my way home. I gave him my number for if we got separated but got home just fine. The next day I got a phone call. He had dialed the wrong number, meant to call his uncle and hit my number instead. We ended up talking for about 2 hours. The next day I got a phone call. He dialed the wrong number again. We talked. The next day I knew he was freakin lying, there was no way he dialed the wrong number three days in a row. We started talking every day and had our first date about a month later. Those first few months he won my trust and my heart.

August 12, 2007- Big Daddy got the worst phone call any parent could get. He had lost his daughter. As soon as I got the news, I took off work and spent every minute I could with him.

August 14, 2007- was the 1 year anniversary of the day I lost my Gramma.

August 18, 2007- I lost my best friend. which I can't talk about because I signed a confidentiality agreement.

August 31, 2007- I got full custody of Alexander the Great.

September, 2007- my Dad got the news that there was nothing more the doctors could do.

November 3, 2007- my Dad lost his battle with cancer.

November 8, 2007- Big Daddy's Dad lost his surprise battle with cancer.

*** side note... when someone tells you people in their family have passed, the correct response IS NOT "Boy, your family's dropping like flies, aren't they!? Didn't the same thing happen last year when your Grandma died?***

January- April 2008- we broke up because it was all just too much.

April 2008- Big Daddy called because he was close to my house and not feeling well. By the time I got there he was unresponsive. Called 911, called his family, went to get his kids. I stayed in the hospital with him for the weekend which I got fired over- turned out ok because that was also the day Alex got kicked out of his 2nd daycare in a week and Big Daddy could not be alone for the next week- doctor's orders. Turned out to be stress.

June 14, 2008- I lost my Grandma.

August 2008- We got this house and began our fairy tale ending.

This whole first year, I don't know what I would have done without him. He helped me get through things I could not have done on my own. Even without that whole first year, this song would still be perfect because he literally changed my life. He changed my view on life. He showed me that I deserved more for myself and my boys than I ever thought was possible. He showed me that my cynical view on people and the "fact" that people were basically selfish and dangerous was wrong. He showed me what good people are capable of. He taught me how to truly love someone other than my children. He showed me that life wasn't all about fighting and that it's ok to trust people. This is why I thought this was, and is, the perfect song to say what he means to me, what he has done for me. Every time I hear this song I smile, I think of my husband and how incredibly lucky I was to find him. Every time I hear this song, I have to text him and let him know how much I love him and how happy I am that he is my husband.

Friday, February 10, 2012

Perceived Parenting Fails

Ok, now. If you go online to wtf.commonsense/commoncourtesy.duh, look under commandment 25, paragraph G, section H, part 5, addendum 3- it will say

A) THOU NEUROTYPICAL PARENTS SHALT NOT JUDGE SPECIAL NEEDS PARENTS.
Followed closely by ...
B) AND THAT GOES FOR YOU TOO, SPECIAL NEEDS PARENTS!

I'm starting to wonder if maybe the Special Needs Parents aren't the worst offenders here. The NT parents at least have the dubious excuse of ignorance. Special Needs parents know what it's like to be judged for perceived parenting fails. We know what the dirty looks are, the offers to spank our children for us, the snide comments, the ones who know exactly how you should be raising your kids and don't hesitate to tell you what you are doing wrong and how their way would guarantee success. Telling you about every article they've read, the stories they've heard from Mom's 2nd cousin's grandma's ex-husband's step-daughter's boyfriend's grandson's best friend's aunt because they know aaaaallll about special needs parenting because their neighbor's cousin's dog had a seizure once. You know what I'm talking about. It's a daily conversation on at least any 20 of the hundreds of pages I follow and any time it comes up, people swarm to that site to add their own experience. I'm not complaining, I join right in. We say- every kid is different! Our kids are special! What works for that kid may not work for mine! Then we start bashing the outsiders, complaining about how they don't understand! They don't know! They don't live our lives! What right do they have to judge us!? We are doing the best we can.

Banding together is good. We need this support. We need people to tell us- oh, you're not a bad parent, they just don't know when to butt out and mind their own business. But we have advantages the NTs don't. We have an entire community backing us. They are on their own. They start judging you, all you have to do is whip out your Special Needs Society Membership Card and they *usually* back the hell off quick. But you attack their parenting and what do they have to fall back on? Nothing. Usually, as often as we have to whip out our Special Needs Society Membership Cards, we start wearing them in a very visible spot as fair warning to any dumbass brave enough to say something. So, you attack a NT parent, they will see it and they will back the hell off quick. They won't dare call you out because you have your hands full, you have soooo much on your plate. You got a raw deal and now you need to be tip toed around. You need to be coddled. Allowances need to be made. Uh-Uh.

That is NOT what we are fighting for. We are fighting for our kids' right to be accepted as different but equal. That means equal all around. You cannot throw stones then cry foul when someone else picks up a stone. Just as much as we resent being judged for a situation that no outsider knows the whole story to, they deserve to not be judged when there is no way you can know their whole story! We only see bits and pieces of people's lives. None of us has the full story on anything another parent does.

The difference between discussing and judging, helping and attacking is all in the wording. Let me make it clear- I am not innocent here, my hands are dirty too. Let's use a recent battle followed by a discussion to clarify what I'm talking about. ***some language has been changed to protect the PG13ness of this show.
  • option a) "That is not my freakin baby!! I am not your effing maid, her effing maid and I am not your baby's maid! If you want to put her in the effing floor, vacuum the danged thing yourself or at least put her somewhere clean! ... You need to grow the hell up and take care of your child yourself instead of pushing all the hard work off on someone else! You made her, you take care of her. ... I freakin swear neither one of you have the sense God gave a goose." (the words pathetic parenting could possibly have been in there somewhere)
  • option b) "Listen. This is my problem... I have a lot going on and I don't want to be responsible for your baby too. I don't want to, yet again, have to- or feel like I have to- take care of someone else's kid when that person is perfectly capable of taking care of them themselves. My hands are full and I'm tired. I need help somewhere."

It's the same message, just worded differently. Which one do you think invited a counter attack on the many, many ways I am a sucky parent myself and which one do you think produced results? Which one hurt the other person and which one explained my position?  How is what I did to this NT parent any different than a NT parent attacking a SN parent? I guess it's kind of different when you are involved in a situation vs being an observer but it's the same concept and if you will notice in the above conversation, aside from the dirty words, only one thing changed. The subject pronoun. When you use the word "you", your sentence usually ends up accusatory. Using the word "I" instead can change the whole tone.


So, this is what I'm going to ask... which makes it a request and from this point on, I don't care what you do because I already said what I had to say...

1. Stop judging other people's parenting no matter their kids' ability. 
OR
2. Suck it up and deal with it when you get the same in return.

Thursday, February 9, 2012

Lexi

Yesterday, Tuesday, I had the great privilege of going with my friend to see a member of her family. We drove up to Cardinal Glennon Children's Hospital and got directions to the Costas Center. Walking into the building, knowing where we were going, seeing what my Dad went through did not prepare me for what I was about to see. What I saw was a very special little girl. She is beautiful, she is smart, she is strong and so very sweet.

I have never heard such a small child talk about such adult things. Standing there listening to this 9 year old girl discuss what seemed to be small things to her with the hospital staff, it struck me how much she is dealing with. The fact that she is doing it with an amount of grace and poise that would put an adult to shame (or, at least, me) left me in awe. I whine and complain when I've had a bad day. She's smiling through what has to be a significant amount of pain and fear. Lexi is fighting for her life, and don't think she doesn't know it, but she chooses hope. She chooses faith. She could be upset and dwell on the negative things but she doesn't. She is a bright spot in a dark world.

I look at her life and I think of my kids- the contrasts, the similarities. I want Goofy to calm down and be still. Her Mom wants to see her run and play. I want my babies to sleep, her mom is happy to see her wake up. but it's not all different. She loves cats. She loves to be artsy and create beautiful things out of beads, clay... she loves sparkles and glitter. She loves to do her nails and wear girly clothes. She is a perfectly normal little girl in a perfectly horrific situation and she is doing her best to look at the bright side of things, to find the sunshine and roses even in a dark place.

Her normal is not unique to her. The Costas Center is full of kids dealing with her normal, they are doing their best to be their own bright spot, a ray of hope for these kids. They have created a place where kids can be kids as well as get the most up to date treatment they so desperately need. The things I saw there, amaze me and bring tears to my eyes. A prayer from my friend probably says it better than I can...





"Dear Heavenly father, As I walked thru the halls of the costas center yesterday I saw one child after another needing healing,My heart is aching O Lord for all the Children. O God all those babies with cancer need you o Lord. Lord I know you already know the pain and sickness and o Lord just ask for you to hold and touch them keep them fighting O lord and heal this terrible cancer lord help them cope help their family and any way they need you lord and please o God heal those hurting children...Continue to show the doctors the way and continue to work your miracles for we know its you O God when a doctor say there is no way they should still be here that is you God that is you showing all the miracles up there Continue to Hold and touch them O God ....In Gods name I Pray...AMEN"



And this is where I am asking for your help. Whatever you can do. I'm going to try to get a donate button on my blog for her, not sure yet how to do it. In the mean time, here are a few things you can do...

1. Grow out your hair for Locks of Love.
2. Donate soda tabs to the Ronald McDonald House Charities to help these families stay together when they need each other the most.
3. Contact your local Cancer Center for kids to see how to donate things that the kids could use like art supplies, clothing, toys, books, movies, snacks...
4. Go visit.

This is the play room at the Costas Center. Every time a child touches a toy it needs to go in the dirty toy bin to be cleaned.

These are works of art the precious children here have made. You may not be able to see it but those little black dots to your left are the children who were treated here. A lot of them, huh? and that's only part of one collection.

That's the dirty toy bin in the back. It takes a lot of work to let these kids be kids without exposing them to germs their tiny bodies can't fight. As you can see, much thought went into this room. The rest of the Center is just as impressive, just as full of love and hope.

Wednesday, February 8, 2012

Brittany


February 8, 1991 was a special day. It was the day that Brittany made her long awaited debut into this world. She was a happy and healthy baby who captured her Daddy's heart right away and never let go. She had a major impact on all the men of her family, she taught Thing 1 how to be independent, she taught Thing 2 how to be able to count on someone.
Now, all the stories I can tell you are 2nd hand. I can tell you about the memories and the profound sadness of Big Daddy, I can tell you the ongoing heartbreak of Thing 1, I can tell you that everything in Thing 2's life depends on the answer to the question WWBD? but I can't tell you much about her life 1st hand because I only met her once. I can tell you she was a beautiful, wise beyond her years, street-smart girl who made one bad decision. She, and her friend Josh, decided to accept a ride home from someone they thought was "sober enough".

And this is my plea: Parents, it's not enough to tell your children not to accept rides from someone who's been drinking. Let them know they have a re-usable get out of jail free card. Let them know that no matter what is going on or how afraid they are to get in trouble, they can call you. Let them know that you will be there. That it doesn't matter what fight you had a week ago or even that day, when they are in an uncomfortable position, no matter what is going on, all they have to do is call. Then when you get that call, take into consideration that your child was brave enough to say "Mom, Dad, I messed up and I need you." Then take into consideration that that phone call may have just saved your child's life and saved you the phone call that would shatter your world.