Friday, March 30, 2012

For No Guile.

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I have an attitude problem.

I do. I really, really do. I'm a fraud. You guys talk like I'm so great, sometimes you post on my wall and tell me how much I have helped you or my page has helped you and how I make you feel like you're not alone. But I'm not doing such a great job in real life. I'm feeling torn. like the 2 angels on your shoulders, ya know? It's Mommy. and I feel horrible.

She keeps calling me and I'm trying to be nice because I know what it's like. and because she's respecting the times. for the most part. I'm trying to listen and be understanding and offer advice and help out as much as I can- but that's the Good Angel. The white one.

Red: Why do I have to do it? It's not even my kid. When is enough enough? Oh, you don't know how to read or fill out school papers? You poor thing... THAT'S BECAUSE YOU EFFING BAILED ON ME!!! That's because I was left to do it all alone and now I have to help you? seriously? How is that fair!? If you had been here, you would know!

White: That's over and done with. All it did was make you stronger. In a way didn't you wish this on them by cursing them for not helping? Don't you owe it to them to help?

Red: Not so much. No amount of frustration or anger causes developmental delays. Where was the help when I needed it? All I got were arguments and accusations. Why do I need to pick up Daddy's slack on BOTH of his kids? and now that they need MY help, they want to keep up on Alex? Where are they when I need help? Shouldn't this be a 2 way street?

White: It's not the kids' fault. Do you really want to take it out on them?

I'm going to do it. I'm going to help. I am helping. But I'm having trouble doing it with a smile on my face.

Thursday, March 29, 2012

My kids come first- an angry post.

I have considered a few different titles for this post including "what the hell is wrong with these people!?" but I thought that one might be slightly offensive. I am so freakin angry right now and I'm not even playing.

Last night, Thing1 asked me if I'd be able to babysit today- hell no! Alex is still sick, Walter has a doctor's appointment- which I have already missed once and he's been out of meds for like a week and it's. been. horrible. I NEED Concerta for this child. Well, he needs it because his life is seriously endangered at this point. Alex is still sick, Goofy is wild, Alex is still sick, and the baby was sick the other day and, yet again, you waited til the last possible second to ask. No. "well, not at all tomorrow?" No. My kids come first. "well, I don't know what to do." Not my child, not my problem. My stuff has been on the calender for weeks. "I don't look at that calender!" Not my problem. I told him not to even bother asking Mom because she's had kids for an entire month straight and because for an hour tomorrow (today) I need a babysitter so I don't have to take the whiney one and the wild one with me to get Walter from school and take him to the doctor.

We've been having this My kids come first problem for a while. With everyone. Even Big Daddy thought I was being a b*tch until like, last month when he said ok, enough. We need to put our kids first. Ya think?  All these other kids- they have parents. My kids have me. All these other parents? Need to be responsible for their own kids because I can't. My kids HAVE TO come first. I will not compromise on that.

So I get up this morning to the news that Mom is babysitting. Areyoufreakingkiddingme!? This is ridiculous. But fine. I will take at least one of my kids with me. if not both. I will figure it out because they are MY kids. But I am sick of this. I'm sick of the blatant disrespect of the sacred calender, I am sick of all of the assuming I can take everyone else's kids at a moment's notice. I am sick of the complete disregard of my priorities and my responsibilities. at some point all of these other parents need to grow the hell up and take care of their own kids. I don't mind helping but I have things going on too. Is it too much to ask people to respect that?
***Not talking about my brother because he takes care of his own and I only help while he's at work- the same hours every day, the same days every other week- and his weeks are labeled on the calender for months to come. He respects that I have priorities and right or wrong- even each of my kids have a prioritized place.

So, then Thing1's girl shows up with the baby. Mom's not here. What? Isn't she the one babysitting today? Yup. I told Thing1 I'm not... the whole lecture on the calender and priorities and, surprise, my kids come first. "Well, I'm working the same schedule for the next 6 months." and she heads for the calender. Just because your schedule doesn't change for the next 6 months, doesn't mean I'm going to be available every single day you need a babysitter because, damnit- MY KIDS COME FIRST!!!

Autism Pride


Just so you all know, I do not like Autism Speaks but that doesn't mean you can't. I do not support Autism Speaks but it doesn't mean I look down on you for giving them your money. It doesn't mean I'm going to try to turn you against them. It also doesn't mean that I won't "light it up blue" or participate in walks, it just means I'm doing these things to help Alex wave his flag of Autism Pride instead of telling him he needs to be cured.
I don't help Alex put $1 in the Autism Speaks jar anymore but I know the Autism Speaks walk benefits only them. I'm ok with that only because Alex needs this. He needs to participate in a community of "his" people. If the only way I can do that is funding an organization I have an issue with, so be it. Alex is more important than any thoughts I have or any "agenda" they have. This whole Autism thing is about HIM. Not me. Not them. If the light bulb I buy profits them, there's not much I can do about it because I want my son to know I am proud of him, of who he is and autism is part of that.
Alex is on the severe end, he doesn't know he has autism but I still show him every Puzzle Piece we see in public, still going to light it up blue, still want to go on that walk, his brother still made blue Puzzle Pieces to display for him ...and I still tell him every time I see one of these things about Autism Pride. I don't know that he knows what Autism is but I do know that "aw, shucks" smile when I tell him this is ALL for HIM and he needs to be proud of who he is.
I love all of my sons and I think each one of them is absolutely perfect (not talking behavior because, believe me, I have some bad kids some days). I want them to know they are loved as they are. unconditionally. I don't believe there is anything at all "wrong" with them.
 Every person I've listened to is pro-awareness, there just seems to be some difficulty deciding how to go about it. Blue, to some, represents Autism Speaks which could be offensive. Others are for pink/blue to represent both genders and make it clear that 1/5 (?) ASD diagnoses belong to a girl- it's not a boys only club. Others would like to use a spectrum of colors to represent the Spectrum of Autism. As far as I know (and hope), there are no knock down drag out fights over it, just different people voicing different but all valid points.
The bottom line is, Alex has Autism, he is autistic and there is no changing that. I can rant and rage and plead for a "cure" for this "horrific disease" or I can teach him that different is not less. He is perfect the way he is. I will "light it up blue", not to raise awareness for Autism Speaks but to help my boy proudly and somewhat defiantly shout to the world that he has Autism and that is nothing to be ashamed of.

Tuesday, March 27, 2012

Tuesday Morning Freak-out


I was going to say the worst thing to wake up in to in the morning is a whiney child and knowing the whiney child is whiney because they are sick. but when I saw the whiney child I knew there were worse things to wake up to. Like this.


This is what my child normally looks like...



 This is the child I picked up from school...
 Doc says he bumped his ear.
I say no spider bite?
he says no, there would be a knot.
I say whew!

This is the child I wake up to...



Lots of swelling and red and hot. I have no car. I told Big Daddy with Alex being home, I won't need to go anywhere. So, crap. I text Big Daddy this pic, no answer. I call and say LOOK! he says "Oh, he's fine. I think it's because he was rubbing his face on the trampoline." ... he what? "He was rubbing his face on the trampoline this morning. I asked him if he was ok, he said "Why?" so I told him goodnight and he said "goodnight." ...? "Does he have a runny nose or something?" yeah."Well, that's what it looked like he was doing." Ooooh. but then Big Daddy says he's going to be home early and he's going to get done quick and if he had known I would need the car... which has me thinking he's secretly freaking out. So, there's an Urgent Care center within walking distance so I call the doctor's office.

The nurse at the doctor's office is asking info, I'm giving info. She asked about temp because it was 103 yesterday. I'm not sure, he was hot, I gave him Tylenol, tried to take his temp but he refused, his naked self being covered in poop in the downstairs area, I wasn't fighting too hard. I told her about the trampoline and that he's been in luke-warm water for about 20ish minutes and it hasn't changed his face a bit, just made it a little more red. She said she knows what it sounds like. She would like to talk to the doctor and call me back. She called me back once to ask smooth vs bumps. It's smooth so they don't think it's poison ivy. I told her it's ONLY his ears and face. So, she's going to call me back again.

Monday, March 26, 2012

Sick Day

So, it started like a good, normal, routine school day. I overslept (for the time I set for myself so I have extra time to play in the morning) but got up just in time to get a cup of coffee made then get Alex up and ready for school. Still a beautiful school day. I love school. I love school more today than I did a week ago because I just spent an entire week without the beloved school. So, get him showered, take him to the kitchen to brush his teeth. I didn't even have to put him in a headlock!! When I took the toothbrush out of his mouth he smiled a smile that was so sweet I couldn't help but kiss his cheeks and tell him how much I love him. His response... "Goodbye? Goodbye?" OF COURSE, you're going good bye!! You, sir, are going to SCHOOL! He sat to watch "Ooga" and eat his cereal (out of bagels). He sat there so nicely, then when I called to him to go "Goodbye" he came running straight to me. We sat on the porch swing where he let me cuddle him the entire time we waited for the bus then walked nicely to the bus, didn't rock in the driver's face, didn't try to get the girl in the front seat and turned around to look at me before going to his seat. I shoulda known. I kinda love when my kid is sick. I know. I know. I really do. but he's so sweet!

So, I get back in and sit down with my cup of coffee and my friends (that would be you) to relax. Not much later than that, there's a knock at the door. Big Daddy's bro is in from who knows where, somewhere over seas. So, collect family members for a visit. Queen Victoria is running a fever 101.something. ok. We expected it because it's gone from Thing1's girl to Goofy to Walter to the Little Dementor, we knew we weren't done yet. Big Daddy went to get her Tylenol. I get started on the house for Big Daddy to come ask me if I wanted to go to the store. Ok, fine. Go to get dressed. While I'm getting dressed my phone rings. Alex's nurse. awesome. fine. I go get him. I'm talking to his aide, she said they took him outside to try to cool him down. She says "103 is a high temp for a little guy." O.o!? 103!? They said 101!!! She said it was 101 in one ear and 103 in the other. Then I see this...

and I'm freaking. I'm like seriously trying not to cry. I call the doctor's office to see if they have any appointments open today because if they didn't, we were stopping by the Urgent care center on the way home. They did, they said to come on over. So we go.

The doctor said it looks like he bumped his ear. Clumsy little brat freaked me out for no reason! He has the same virus as everyone else, bumped his ear and has no ear infections- woo. Since ear infection season is almost over and he still has 1 tube, he wants to wait to discuss more tubes. Then we came home to go to the store for sick supplies and food. Then we came home to do a lot of this...




***Whoops. Forgot to mention that I'm pretty sure- at the school, the aide crossing her fingers that I didn't get it and at the doctor's office, with the coughing/sneezing in my face, slobbering/snotting all over me pretty much all sealed my fate, now I'm feeling kinda crappy myself. BUT, Alex is eating Tylenol Meltaways all by himself. with his own 2 fingers. willingly. woot-woot. *knock on wood*

Sunday, March 25, 2012

Zoo time!!


I am so glad Big Daddy told me where we were going before we left because I was prepared for Wal-Mart in flip-flops, capri jeans and a hoodie and I also did not pack a bag other than a rubber hippo and extra diaper in my purse. Not good for a trip to the zoo.  So I changed into a t-shirt and tennis shoes and traded a few things around in the going to Daddy's bag because with Sister now being a special needs kid (autism or not) I think I can give up any hope of Alex going to Daddy's for a visit. We loaded up the wagon-stroller and headed on out. Kinda. We were all loaded up in my car, buckled in, in reverse and my brother, Mom and his kids loaded up in his car headed to take them home when Mom got a phone call. The L.D. and T.S. are not going home today. Maybe later this week. While Big Daddy was on the phone dealing with drama I said the heck with it and went to get another cup of coffee before we left.

Hit the road...



We got White Castle's for lunch (chicken rings for the poop monster) and ate at Forrest Park.
Big Daddy isn't used to feeding Alex and made the mistake of handing him the chicken ring whole.
If you give him whole food, he'll take a bite and throw the rest. You have to hand him bite sized pieces.

We had to walk forever to get to the zoo.
Thought I was going to die pulling their fat butts so Big Daddy took over.

Once inside the Zoo,
I thought it would be an awesome opportunity to practice
 "hold hands" and "Walk with me."
He did GREAT!!

One good thing about the Zoo,
Touching allowed!!
Woot-woot!
The reason I will never, ever, ever go back to the Arch
where you cannot even lick the outside walls.

Also love the Zoo because it's a window licker's paradise.
He LOVED the hippos
but it was so crowded he only got a few seconds to watch.

I thought this was his favorite.
I may have been wrong but we'll get to that in a minute.

He got tired of walking and decided on his own to sit down
instead of throwing himself on the ground screaming.

He also loved the rocks.
and the fact that he could run his fingers over them
and look at them up close.

He did not like this one.
I think it had to do with lighting.

This is the window he decided was worthy of his lip prints.
This window belongs to the monkeys.

This is also the place he decided he was going to pull
up a seat and stay a while.
After a few minutes I said "Are you ready?"
He said "Why?"
So we sat.

This was Goofy's favorite part because he didn't get yelled at
for climbing or walking in the flowers/trees.

Walter had a good time.
He HAD to have pictures with the turtle.

Saturday, March 24, 2012

Simple Answers- Wandering.

I was thinking about a $6.99 magazine, wondering if it was worth the price and what information they could possibly have worth that outrageous amount, when I headed over to clean out my email and ran across this joke:

Bob went to a psychotherapist. "Doc," he said, "I've got trouble. Every time I get into bed, I think there's somebody under it. I'm going crazy."
"Just put yourself in my hands for one year," said the shrink. "Come to me three times a week, and I'll cure your fears."
"How much do you charge?"
"A hundred dollars per visit."
"I'll sleep on it," said Bob.
Six months later, the doctor met Bob on the street. "Why didn't you ever come to see me again?" asked the psychiatrist.
"For a hundred bucks a visit? A bartender cured me for $10."
"Is that so? How?"
"He told me to cut the legs off the bed!"

You ever have one of those problems? Problems that feel so big and you don't even know where to start and you're willing to give anything to solve them? 

Let's take Wandering for example. Wandering is a big problem with our ASD kids. We started a conversation last night that continued into this morning on the scary fact that all of us could lose our kid at any given time and some of us have lost our kid for the scariest 10-15 minutes of our lives before. It's a terrifying thing. There are plenty of big fancy things to use in case your child gets lost such as Project Lifesaver. Which is a wonderful and very helpful organization who work with law enforcement to find your kid. But what about the ones like Alex? If Alex is out of my sight, even for a second, it most likely could cost him his life. I can't afford to take that chance so, Project Lifesaver won't do me much good. The cheapest/most effective way for me to keep my son alive is to not let him escape in the first place. I am on a limited budget so the tools I use to accomplish this have to be on the inexpensive side. The first thing I did was buy locks for the doors.
 
You can get this one for $5 online


We also needed some back up security to limit his access to doors. I was not comfortable with the thought of locking him in his room at night so Big Daddy came up with a brilliant idea of making a gate to put on his room instead of a door. He is safe in his room without the locking him away feeling. He's safe but not isolated.


This one goes to his bedroom for when he is sleeping or stressed and needing time alone.


These gates block the basement stairs and living room which has a door to the garage which brings us to...

This allows the kids to get in and out without having to wait for someone to unlock the door.
Here's one online for about $20

The most expensive thing that we have invested in, not only for Alex's safety but also for energy saving purposes were these windows from Window World.
These windows give us the option of opening them from the top, cutting down the likelihood of him falling out as well as an added safety feature of this...

Which stops the window from opening more than 4 inches from the top or the bottom. Ha, Houdini!! Get out of that!

I call these windows expensive, which I mean, they weren't cheap BUT there is some kind of home improvement, energy efficient clause in tax returns which gives you so much back for making energy efficient changes to your home. So, that helped.

The last thing we are working on (until he finds another way to escape) is fencing in the back yard. We had a chain link fence but with him... So, we found these fence panels at Home Depot for like $25 a section on sale (woo!) and less than $10 per fence post. Even with that, it gets kinda rough when you need so many. You can tell from this picture how long we've been working on it...
A little at a time we are finally finished with it. Except stain. still working on stain.

And, this is my $10 answer to a $1,000,000 problem. Stay tuned for our next installment of Simple Answers being brought to you by a friend on the subject of stopping our little master artists from having access to "paint supplies".

Friday, March 23, 2012

Touch

Touch pissed me off tonight.

There was nothing actually wrong with the show, the first time I ever saw it, I loved it. I thought it was an accurate representation of the communication issues, the helplessness we feel in trying to know our children, the difficulties we have in keeping them safe and the us against the world mentality. I thought it would be a fun show with just a little relatability and a whole lot of whimsy.

but not tonight. I don't care that they took "autism" out of the description. Autism with a higher purpose? areyoufreakinkiddingme? What higher purpose? Why am I fighting with family and organizations and professionals and strangers and other special needs parents? It sure as hell isn't for a higher purpose. What good could possibly come of this?

Autism super-powers? Where? I can't keep my kid's clothes on for 5 minutes. I am cleaning poop off of surfaces that shouldn't need to be cleaned. EVERY DAY this week. I am gagging as I try to wash his mouth out. Where is the super-power in that?

Connected numbers. Seeing the whole universe in a page of random numbers. Wasn't it just yesterday that this video broke my heart because I wondered if he even had the capability of dreaming? That I searched his face for the possibility that he could imagine doing these fanciful things?
I hate this f*cking song.

and sitting here thinking about this, I want to spend an hour watching a use-to-be-autistic-now-only-mute boy who can see everything that ever was, is or could be in numbers? 

Maybe it's just a bad week and I'll be back to liking the show next week but tonight it made me angry. What the heck, right? Why not? Gotta be mad at the show because who else is there to blame?

Thursday, March 22, 2012

Sister's consult.


Ok, it's been a long day and I'm going to try to remember everything. I took pictures to help *smirky smile*. Ok, smirk wiped, the pictures have nothing to do with the consult. So, here we go...










I wasn't sure how long it took to get from our house to Mommy's so I timed it to find out how long it would take to get to the Clinical Psychologist's office which is a hop, skip and a jump away from my front door. I tell you what, it was the best 15 minute drive of my life. So quiet with no one with me. So, anyway, I get to Mommy's house and it looks like it's going to be a good day for Sister because she loves me!! not so good for a doctor's appointment but whatever. She loves me so I'll take it.




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The doctor had several things to say, he cannot argue that she is developmentally delayed but the fact that she was a preemie makes him hesitant to give her a diagnosis. A lot of the "behaviors" we are noticing could be due to other reasons. That she takes her clothes off and wants to run naked is not abnormal. No, it's not but the fact that she did it at my house is. She is not comfortable at my house, it is not a 2nd or 3rd home. It is not even a place she visits regularly. For her to take her clothes off at my house is no less abnormal than taking her clothes off in the middle of a grocery store or in his waiting room. He said there are several factors that could be at work here including the fact that she has an older brother on the spectrum. She could be imitating her brother. No, she can't be. As I stated in this post, she does not see her brother often and while I may buy that excuse with the Goofy child who grew up with an older brother to copy and a mother who's a routine oriented, ritual-fanatic because of her other kids, this girl did not. At this point he called me argumentative. Serious, he did. I didn't feel I was being argumentative. I felt he was wrong and needed to know the facts of our day to day life because I didn't want autism ruled out because he was misinformed. I would be happy to hear that she doesn't have autism but I want to hear that she doesn't have autism based on real reasons. He would like to wait about 6 months to see how she does. If it's delays due to being a preemie, then she should start catching up by then. If not, then he will look a little more seriously at a diagnosis of PDD. He gave us 2 GARS papers to fill out and bring back at her next appointment next Saturday. He said he doesn't see that not getting therapy services the next 6 months could hurt her. She will probably just catch up on her own. BUT, if we NEED services he can give her a diagnosis, he just hates to diagnose her with something she may not have.



Mommy asked about Melatonin because Sister doesn't sleep more than 6 hours a day and never at the same time. He said he wouldn't worry too much about that because some kids just need less sleep. 6 hours may be all she needs. He said most people he talks to say the Melatonin doesn't work. He read my face and said in some cases it may work but most people he talks to says it doesn't and kids don't usually need Melatonin because their bodies produce significant amounts of Melatonin, it's adults who need it because as you get older the levels your body produces drops off. Seriously? like, really?



Based on these last 2 appointments with Psychologists, I highly recommend that you do not consult one for an autism diagnosis.



However, I did get some useful information. He says that not understanding jokes and sarcasm is speech related. Which makes me want a speech eval for the goofy child even more. He said several other things that caught my attention about my concerns with the goofy one but I can't remember what all they were. But then again, this is the same guy who said immediately repeating back what was just said to you is a normal way of learning language and is in no way connected to echolalia. According to the free dictionary, he's half right...







ech·o·la·li·a (k-ll-)



1. Psychiatry The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types of schizophrenia.


2. An infant's repetition of the sounds made by others, a normal occurrence in childhood development






OH! yeah, and his "Yeah, well, I can look up symptoms of schizophrenia and say Oh, I have that symptom and that symptom so I must have schizophrenia." was not received with amusement. not in the least little bit. There is a difference in what we are saying. We are not looking at one or two symptoms and saying- oh, she has autism! We are seeing enough red flags to warrant a serious evaluation. Serious being the key word. I, for one, do not appreciate being made fun of or having my concerns laughed off. and it's not even my kid! I can only imagine how her mother was feeling. Jackass.




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