Friday, November 30, 2012

Walter's Missing Report Card

While cleaning the kitchen today I came across a piece of paper. It was the top portion to Walter's report card that needed to be signed and turned back in. Walter came walking in the door like all was normal and not a thing amiss.

Me: Where's your report card?
Walter: I gave you the slip to sign.
Me: uh-uh. Not signing without a report card.
Walter: *sigh* I don't know where my report card is.
Me: Not my problem.

5 minutes later, Walter comes back with a book in his hand.

Me: Where's your report card?
Walter: I don't know where it is.
Me: Ok, then. (taking his phone hostage) You want the phone, you will bring me the report card.
Walter: Well, if it was in my planner, maybe I accidentally threw it away.
Me: Not my problem. You want the phone, you will figure it out and bring me a report card.

5 minutes later, glancing at the D's and F's,

Me: Ok, then. For the next 6 weeks, until I get a report card with nothing below a C (lowering my standards a bit), you will be going nowhere on a school night.
Walter: Mom! I need help finding my Math notebook!
Me: Not my problem. Not my notebook, not my grade, not my homework, not my responsibility. Put your crap where it belongs and you will know where it's at.

Walter is now sulking.

Wednesday, November 28, 2012

Illness pretty much ruins the SuperMom image.

Rough night last night. If you're on the page you know Alex has a pretty nasty virus that is causing some tummy issues. Throughout the night he's had several baths because I can't just flat out wipe him right now, it hurts, man! So, he's had several baths and applications of diaper rash ointment.

The first bath after bedtime I gave up and asked for help.
I said to my husband, "Please come help me with this."
He says, "help you with what? Just put the diaper rash ointment on him."
"*sigh*, just please, come help me. I just need you to stand there." For some reason Alex is good when someone else is watching, especially "Dad".
"This is ridiculous. Well, there's your problem. Just lay him down on the towel and put it on, you can't put it on when he's standing up."
"huh. That's brilliant! Why didn't *I* think of that!? I'll get *right* on it. Just stand there and look pretty for a minute."
I lay Alex back down on the towel, start to apply the ointment and get kicked in the shoulder. My husband decides it may be a good idea to hold one leg and coo at him to help him be calm while I very carefully spread the creamy paste all over the raw, red areas.

By 5am, if Alex started talking today, he'd be fluent in sailor. He's got diaper rash ointment all over him, I have diaper rash ointment all over me, neither one of us are happy about it. I drop the whole loving mama thing and simply direct him to his bed, he's happy to go. He knows I love him and he's beautiful and perfect and so damned sweet. I don't need to tell him every single flipping time I put his ass back in bed. He gets it.

7:30am, my husband is hating the snooze button.

7:55am, my husband is complaining that my 5 minutes has lasted hours now (he exaggerates. it was hour. singular.) and the Goofy child will miss his bus. I inform him that I *really* have 5 minutes this time. He harrumphs at me so I kick at the child at the end of the bed and tell him to go get dressed. Goofy swears he has 5 minutes. I agree.

 My husband tells me Walter isn't up yet. fine. I'll get him up in 5 minutes, after peeking at the clock I make that 3 minutes. I kick at the child and tell him to go get dressed. My husband wants to know if I laid his clothes out. No, but he knows where they are and today I don't care what he looks like. My husband gets up and I let out a stream of words designed to let him know how happy I am that he just guilted me into leaving the bed 2 minutes before my time was up. (he's not home because he's off, he's using a sick day.)

Sometime around 8:30, the Goofy one informs me that his intestines hurt. Great. that is awesome. What do I do now? I can't let him stay home for a belly ache with no other symptoms. But his brother is sick so that increases the chance that his belly really does ache. The clock is ticking and my coffee hasn't kicked in yet so I send him to his Dad who says he's fine. If we get a call, we'll go get him.

8:36am I grab my phone to check the time and teach my kids a few new words. I holler at Goofy that we have to go now. Like, right now. As we are rushing to cross the yard to the bus stop with his hat crooked, his coat tossed on and unbuttoned showing off his mismatched clothes and I'm wiping the peanut butter off of his face with my sleeve, his bus pulls up and he has to run to catch it. He sure is cute when he's in a hurry.

and now, I'm waiting for Alex to wake up so we can start round 3. aaaaaaand, the cat puked in the floor. because why not? Everyone else is doing it. I'll be SuperMom(ish)(enough) some other day, today I'm just going to be happy that I remembered to give the boys their ADHD meds ;)

Saturday, November 24, 2012

Brotherly Love.

I've had it with these boys! Enough is e-flippin-nough, damnit! Walter and Goofy have been fighting like you wouldn't even believe, they woke me up again this morning with their bickering over Goofy getting into Walter's stuff and I can't take it anymore! How can these children not know the special bond they have in a sibling relationship? How can they not know how precious their brother is!? How can they not know that throughout their lives their brother will be the one person to know them and love them faults and all? Do they not realize that friends will come and go but their brother will always be there? How can they not know how lucky they are? Does Walter really not remember all of the years Thing1 threw fits about Thing2 getting into his things or the years that Thing2 threw fits about Walter touching his stuff? Come on!

Enough. So, I go into the kitchen, I glare at those boys and I say, "Walter, what do you love about your brother?"
"Mom! He..."
"I don't care. Goofy, what do you love about your brother?"
"Well, I would love that he put the game on for me." (said with a stubborn pout)

Alright! ENOUGH! I start turning chairs into the middle of the kitchen floor and Walter's all whining no, mom! and I'm all oh, yeah. sit. hold hands. I freaking dare you to let go and I'll be back. and when I get back you'd better have a damned good reason to love your brother.

I go about my morning business and come back to get a cup of coffee. "Goofy, what do you love about your brother?"
"Um, I love that he plays with me."
"I don't care what your brother can do for you, what is great about him?"
"Um, I love that he puts my game on."
"I don't care what your brother can do for you, what is great about him? Walter, why do you love your bother?"
"I love that he's little and I can look out for him."
"uh-uh. I don't care what your brother can do for you, what is great about him? Here, I love that Goofy is a problem solver. I love that he sees a problem and does what he can do to solve it whether it's his problem or not. I love that Walter is protective of those he loves. I love that Walter will stand up for what's right no matter the cost to himself."
They both look down silently.

Then, I give them a task. a 4 handed, 2 person task. They are folding blankets. together. as a team. and I don't even care that I will have to unfold them to make their beds.

Then, Walter is on the phone with his friend. Walter's friend is talking to him about cooking. Walter's friend is making coffee and fixing breakfast. Walter's friend is fixing breakfast for his sister. happily. with no complaints. I say "Hm." Walter says, "I know, Mom. Just don't."

It's hard to believe that something so simple can make a bit of difference but as I sit here writing this, Walter had a problem and Goofy came running then Goofy came running saying he had no signal on his TV and Walter volunteered, "I'll get it." Alex wanted cereal and they about tripped over each other to get it. and all I can think is huh. that was easy. I'll have to remember that one.

Friday, November 23, 2012

The best laid plans...

So, I hit a little bit of a rough patch in my plans. Well, two unrelated sets of plans.

One, I got a reply to the invitation. "No." not unexpected, so, whatever. I can just be determined that the very dysfunctional mother/child relationships that seem to be hereditary in my mother's side of the family stop here and do not continue on to my children. I'm already doing what I can there by grabbing the little heathens as soon as they are in reach to hug them and kiss them and tell them I love them and let them know how beautiful and wildly entertaining they are. well, as long as they aren't driving me flipping insane at the time.

The other one was AdSense. I blog to make money. kinda. I blog for more reasons than that but I really liked the promise of a modest income to make me at least feel useful online and at home. I like looking at my blogging as a job because it helps me stay on track, gives a tangible purpose to what I do. Well, today I got fired. Not from my site, from hosting their ads on my site.

So, I went and pouted for a minute then said to myself, "you know what? you don't need them. FU, AdSense!!!" and I went to take a bath. Then I put on my comfiest feel good clothes- my new yoga type pants and my Paper Clouds Apparel T-shirt (which, I must mention are on sale right now *hint hint*). I put on a bit of makeup and me and Alex got ourselves some pie. Two pieces each. Apple Pie with no ice cream (sad, I know but you make do with what you've got.) and Pumpkin Pie with enough Whipped Topping that there is no way it could ever be considered healthy because who cares how much weight you gain when you've been dumped via no-reply e-mail, right? Yeah. So, me and Alex, we sat there and healed our wounded pride with nice, clean, soft, good smelling, environmentally friendly clothing  (no, I don't get paid for bragging about the T-shirt. I just *really* like the man and the shirt and his mission) and tons of sugar while one of us mentally made obscene gestures toward Google.

Like this one. Except he looks prettier in his ;)

I need to host ads because I don't want to turn my blog into one big ad. I don't want to promote products I don't believe in. The space inside my blog, my words, are reserved for things I deeply care about and people I have faith in. Not to convince you to buy a product from the person who offered me the most money to promote it. My love is free. My words are free. My opinions are free. To keep them free, I need to host ads that you are free to ignore and that do not interfere with the bigger purpose of this blog which is to share stories, experiences, information, to let you into my life and to hopefully be part of yours. 

Not ready to give up on what I want, I googled :) and found a few new options which are the same but different. One of them,, I have no clue what they do but supposedly, they do it on their own. but then I found out you had to have a PayPal account to get paid, which sucks but ok. and since I'm having to set up a PayPal account anyway, I may as well add a donate button to my blog. Not because I'm asking you to give me money to buy a new house or to pay our bills because you have your own to pay but because I know you kinda like the kids (that is why you're here right?) so if you want to buy Alex a teething ring or a stuffed animal for Goofy or something for Walter, you can donate and let me know what it's for (my e-mail address is there somewhere, too) and I will let you know they got it.

and then I found another one. and I'm loving this one because I get a commission on what you buy and I get to choose what ads I put on my blog! Look up, all the way up. See it? I'm not a big fan of Autism Speaks but you can't deny they have awesome things. The banner goes to their site while I can also include ads to individual products. Look to the right (is it right? yeah. ok.) see the cookie cutter? What is the most baked thing for Christmas? Cookies! How awesome would it be to make puzzle piece cookies in whatever color you want? I would LOVE that! and below it, see the coffee cup? mhmm. love that too. and down at the bottom since they wouldn't fit in the side, do you see that jacket!? it's perfect! The bracelet? beautiful and simple. So now I get to share all of my favorite things and only the things I love- no more online home health care degrees, yay! oh, yeah, and Fisher Price is up and to the right but I haven't explored their stuff yet. I took too much time window shopping on the first one :)

So, feel free to look around. Check out the things you are interested in and if you are looking for something I don't have up, let me know!

Tuesday, November 20, 2012

Is This It?

I read a post recently, or, started to read the post and just couldn't because it hit a little close to home that day. these days. I told you Alex has been something else here lately. I'm not sure what's causing it but "Is this it?" has me dangerously close to tears. I love that boy something fierce but oh my Sweet Lord, I wonder how in the world I am going to make it through tomorrow much less the end of time.

I took him to school after his ENT appointment. Sitting in the office waiting for his aide to be called, he's grabbing things and trying to rip down the paper decorations. We go wait in the hall where he can't tear anything up until his aide gets there, he slips down off of the bench into the floor. I pick him up and put him back. His aide comes, he stands up and drops to the floor. I try to pick him up, he twists away. Is this it? forever?

I pick him up from school to take him to the pediatrician, I can't get him out the door. He throws himself in the floor and refuses to stand. I can't do this today. I can't be patient, I can't handle his dropping the way I'm supposed to handle his dropping. I can't think, I can't be calm, I can't be in control because it's taking everything I have to focus on a single thing at a time outside of the wave after wave of stabbing pain in my head. I can't carry him today because it hurts too much so I'm begging please, please, please, get up. We get to the office building and he refuses to climb the stairs. He very slowly crawls up them with repeated begging from me. We get into the waiting room and he doesn't want to sit down. I tried to sign him in and he bolted for the door. I chased him and he dropped to the floor refusing to get up. The receptionist waves me away, she'll sign him in for me. Is this it? For the rest of our days?

We are called back to the room, he drops to the floor just inside the door, he drops to the floor at the corner, he drops to the floor outside the exam room and I give up. I just grab his arms and drag him in. He tries to get out the door, he paces, he hops, he squeals, he vocal stims and I am dying. Between his constant movement, Goofy's constant chatter, his vocal stims, Goofy rustling the paper on the exam table, my increased physical activity trying to corral them both into a safe/manageable area and trying to talk to people, my head is freaking killing me. and they just won't stop. We get out and I'm waiting for a note for school so I don't get that damned letter and Alex is dropping to the floor, crawling around, twisting and turning, trying anything and everything to get away from me. He doesn't want to be here and he doesn't want to leave. I don't know what he wants.

I finally get him out through the waiting room and he does not want to go down the stairs. I cannot even get him through the door to the stairs because he's fighting me. He throws himself in the floor so I can't get him through the door and Goofy disappears through the door at the bottom. I'm begging and pleading with him to please just come on. I finally get him in the door and halfway down the first set when a woman pokes her head in the door to see why there is a smallish unattended child on one side of the door and what sounds like an epic battle on the other. I'm trying to see what the hell she's doing with my kid and trying to convince Alex to come down the stairs when he chooses to leap at me instead of stepping down the next 4 steps. God, I hope he didn't break his ankle. Seriously, is this it? Is this the rest of our life?

It's bed time. I put them to bed and Alex doesn't want to sleep. He wants to scream and jump and throw things and bang on the walls and kick the closet door over and over and over while I sit in the dark in my room where he can't see me and pray for mercy... I can't take this. I need my sweet baby back. I am not strong enough to handle hard autism. if I can't have my sweet baby back, can you at least make him sleep? please? I'm so tired.

And then...

"Good morning, good morning, good morning to the boys and girls..."
Flops to his side and pops his thumb in his mouth.
"Good morning, good morning, good morning to the whole wide world..."
sweet sleepy smile around his thumb.
"Hi there, my baby. are you ready to get up? Want to go to school?"
lots of stretching before he bounds from the bed with a big smile and a screech to run off through the house.

Sitting with his cereal, he's got a teething ring beside him, a teething ring in my pocket, a teething ring in my purse but he looks at me with those eyes the color of a stormy sea (for now, they'll be another shade of blues and greens in a minute) and leans over to gnaw on my hand. I lean over to him and he lifts his hand to wrap it around my head, grabs my hair and pulls me close. He opens his mouth and gives me one of his rare kisses.
Waiting for his bus, the Goofy child is dancing around, talking to me, talking to his brother. He is excited and proud of himself for being a good brother because he gave Alex a pumpkin sticker on his chest. Luckily, Alex is too busy examining the awesomeness that is his teething ring to notice the sticker which buys me some time to let his brother be proud of himself. I can ask the bus aide to take it off.

The bus comes. I tell him to come on in and we take off across the yard, him doing his happy flappy jig all the way to the bus. He gets in his seat and I walk back to the door meeting the Goofy child with his laughing chatter halfway there. Alex watches me from his window, I wave and they pull off. When they make their left, I come in.

Is this it? I don't really know but I can tell you that if this is it, it's a pretty damned good "it" to have.

Saturday, November 17, 2012

A hair cut, the playground, and Thanksgiving preparations.

Today has officially kicked my butt. Luckily, it seems to have kicked Alex's too. We started out with a hair cut because the boy desperately needed one and I just could not put it off a minute longer. Driving me crazy. So, if you are interested in seeing Alex's home hair cut process and Goofy's crazy interruptions, here's a good way to waste 30 minutes...

After this, I decided we absolutely HAD to get out of the house for at least an hour. Give the 2 boys I have for the day an outlet for their energy, a reward for Alex doing so well with the hair cut and give me a freakin break.

A lot of the time I was able to sit on the swing with my mp3 and watch them run around. Several great, wonderful, fan-freakin-tabulous things happened this trip to the playground:
  • Alex sat on the big boy swing, grabbed the chains and held on for a couple of sways.
  • Alex slid down the slide several times- a small child sized slide but hey, it's a slide.
  • Alex pushed me down the slide twice
  • Alex played catch with me
  • Alex waited his turn to play catch with me
  • Alex threw the ball TO me. a couple of times.
Yay, Alex!

Then when we came home, I put him in his room so I could unload the car and fix some popcorn, when I went to get him, he had put himself down for a nap. break time! Yay, Mama!

Now to figure up a shopping list for Thanksgiving dinner. and to find out who's coming :/ I am so not in the Thanksgiving mood this year. But I am looking forward to Christmas :) and snow.

Friday, November 16, 2012

Thankful Day 16: School Bus.

These kids have been something else these past few days. weeks, maybe. Even the Little D got time out for the first time in weeks. and Alex, my angel? My sweet, sweet baby? not so much an angel. or sweet. or merciful. or kind. that boy has been driving me flipping insane.

He's splashing around in the turtle tank, sink, mop bucket, toilet, throwing everything in sight, throwing himself around in any way he can to escape me (and school staff), eating things that ought not be eaten- and he. bit. me. Hard. it sucked. Granted, that's what most people do when you try to take their precious treasure out of their mouth with your finger, but this is a first for us. for him. I'm swiping my finger through his cheeks pretty regularly to confiscate things that don't belong and he's never bit me before. Not a pleasant experience and not one I look forward to repeating.

He's not sleeping very well, oh! oh! let me say yesterday, if I had posted, I would have been thankful for allergy season because allergy season we can switch from Melatonin to Benadryl which works sooo much better. kinda. They end up being stoned for a while before they get sleepy but at least they can breathe through their nose, right? and no itchy ears. and sleep. sleep is good. sleep is very, very good. anyway, not sleeping well. That means he's spending that time stimming and screaming and banging things on furniture, walls and windows. Big D's not very happy about that because he has to be up at 3:30am to get ready for work and Alex's room is next to ours so we can hear him if he's awake. and not sleeping well leads to oversleeping. for me. and a rush to do a quick baby wipe wipe down and slop some clothes on before rushing to the bus. 'Tis the season, right? I always run into trouble this time of year. Not sure if it's the time change, the light change or the kids just wearing my ass out. but... Every. Year.

and the day before yesterday since I didn't post, I would be so freaking thankful that today is Friday so I can have the weekend to regroup and start all over Monday. Hopefully with the same number of kids I started with...

So, anyway, Alex is something else and Goofy is Goofy to the extreme- even more extreme than the normal Extreme Goofy with his roller coaster emotions and his incessant demands that he get what he wants and things go his way and his non-freaking-stop temper tantrums and his constant critique of my decisions for Alex because that's not the way it should be done because he could do soooo much better because he would do this and that instead and Walter's pre-teen thinks he knows everything, should be boss, questioning all forms of parental authority attitude and fighting with his younger brothers...

I am THANKFUL, so very thankful, thankful enough to use all caps and repeat the word "thankful", that they are all- every single one of the little heathens- on their respective buses and on their way to pester someone else for the day.

Tuesday, November 13, 2012

Alex: Regression

The post I wrote on School Abuse has me looking back over the years at all of the changes in Alex and questioning reasons.

Smile for the camera!

Dance Party!

ooo, what's this?

notice the eye contact, engagement and the whole pushing his brother on the swing?


decorating his brother's present.
All of the things in these pictures that he used to do all of the time don't happen anymore.

Some of them I know why he stopped- he stopped sliding when he tripped down the slide face first. He stopped climbing when he left the Regular Elementary who had awesome climbing equipment. The climbing equipment at the Special School is too big and too hard for him.

But then, where did these other skills go? When did he stop wanting to play all of the time and start pacing instead? When did he stop wanting to touch people or to be touched? When did he stop pointing? dancing? When did he stop being part of our world and existing in his own?

Why? All of these pictures are from a different life. When I was a single mom and we could do what we wanted, when we wanted and acting a fool wasn't frowned upon. When he was in daycare. Before he ever went to the Regular School. Before his father stopped being his Daddy. In a time that instead of being the one family in the entire family that can be counted on for anything, I was the one person in the family that couldn't be counted on for anything. Before autism took over our lives and everything turned into therapy. Before routines and a clean house took priority over everything else.

So, which of these changes caused the changes in him? Or is it the natural ebb and flow of autism? The usual changes that come with getting older? and, finally, how can I get him back to where he was?

Monday, November 12, 2012

Respect the Stim, Respect the Child

Remember this game?

Three of these things belong together
Three of these things are kind of the same
Can you guess which one of these doesn't belong here?
Now it's time to play our game (time to play our game).

So, let's play!

1.) ask for help                                                                  2.) clean up
                           Being responsible is...
 3.) work                                                                      4.) quiet hands
I don't know that I have publicly taken a stand on this one but let me tell you, I hate quiet hands with a freaking passion. I spoke (sorta. e-mail. same thing.) with Alex's teacher and she's on the same page. The "quiet hands" that instantly threw me into a mama bear ready to rip someone's face off mood were not the "quiet hands" on the worksheet. She understands that "it is a way for them to deal with the things going on inside and outside of them" and allows them to stim when they need to. That being said...
I'm not going to get into the whole "Functionality of Stims" or "Stimming as Communication" because other people are putting the words together for that (I'll share them with you when they are done). What I am going to tell you is at Goofy's meetings, I fidget. a lot. the more overwhelmed/agitated I am, the more I fidget. The school staff did not grab my hands and insist that I be table ready.
At the support group, I was fidgeting. As much as I try to keep my fidgeting below the table, as much as I try to be respectful to the people around me, it doesn't always happen. I forget, I don't pay attention to what my body is doing. I know it was distracting the woman to my left because I caught her glancing at my hands every now and then, she did not once hiss a "quiet hands!" in my direction. Not once did she tell me that what I was doing was unacceptable or that I needed to be still.
If no one would dare do these things to me, why would they do it to a child? Why would it be disrespectful and socially unacceptable to speak to me and touch me in these ways but it's perfectly fine to treat Alex like that?
Alex is non-verbal (for now), he communicates through eye gaze, facial expression, stimming, gesture, and very few words. Would a teacher, a parent, anyone dare cover a child's mouth to silence them? Why stop the hands?
I encourage "Nice Hands" which are "Gentle Hands" which are "Easy" and not hurting. I will try to help him learn a less invasive was of using his hands, but I will not silence him, I will not keep him from exploring his environment and I will not stop him from self-regulating in a stressful environment.
A couple of links for you:

Saturday, November 10, 2012

School Abuse

Last year, I said that I refuse to be involved in any school abuse related posts. I said that for my sanity and the ability to view Alex's school objectively, in an unbiased, non-paranoid fashion, I needed to step away from the school abuse issue. I said that Alex's school is an awesome school. I said that I watched Alex with the staff and I knew that they had a good relationship. I said that we had good communication and that there was nothing for me to worry about.

My house, my rules, right?

Well, this year I am changing my mind.

I have 4 links to 4 videos here. Watch them, listen to what they have to say.

This was the original "Awesome School". These were the people I trusted with no reservations. I took Alex to school, walked him to class, I picked him up. I talked to his teacher, to his aides almost daily.

I knew their routines, I knew what they were working on and how because they showed me. I watched circle time and to this day sing him the good morning song that teacher taught us. I went to lunch with him and watched them teach him to carry his own tray in steps. First, the empty tray. Second, tray and utensils. Third, tray, utensils, closed milk carton. I watched him clear his own place.

They showed me how he loved the sensory equipment and explained why, they showed me the PECS system they used to transition from room to room. They showed me the sensory room and every item in it. They gave me a computer for Alex to use at home with games he loved already installed on it. They showed me how they were teaching him to obey the command to "Stop." by working in teams- one calling him to cross the room and to "stop", one beside him to show him "stop". They showed me how they were working on potty training. They taught me just as much as they taught him. I knew they had a good relationship.

I lived across the street from the nurse for more than a decade before Alex was even thought of, before Walter. I knew her from the time I was a little girl. I chatted and talked and laughed with her when I dropped off Alex's medication. We discussed her family and my family. I knew she adored Alex. I knew that she was a lovely woman who could be trusted with any child more than any person in that school.

The APE teacher was Alex's APE teacher.

Not long before we moved, his teacher came up to me when I walked into the classroom to get Alex. She was very upset, very shaken. She told me that some parents had sent recording devices in with their kids and she wanted me to know that that had nothing at all to do with her classroom. I didn't know what she was talking about because we watched cartoons, not the news. I didn't have a computer besides Alex's which only had games. So, I shrugged it off.

When I started hearing your stories and the things going on in "other" schools, it never occurred to me that something this serious, involving so many people in the school could have happened in a school I spent so much time in. until I asked my friend why her boy wasn't in a separate school. when I was telling her her options because Alex has had "such great experiences" in separate schools. and out of habit, googled to check my facts.

So, the question... what can we do to protect our children from abuse, protect staff from unfounded accusations, put the parents' minds at ease, and make sure IEPs are being followed? Are cameras in the classrooms a logical, practical solution or would that violate the rights of the students? What do you think?

Friday, November 9, 2012

This is the song that never ends...

I went for Goofy's 504 today prepared for battle. and didn't need to be. They were awesome. He loses his aide but they swear they got this. he will be fine. they wrote down suggestions (and listened to mine and wrote some of them down too) and we can look at an IEP next year if he needs it. The biggest problem is the Occupational Therapy. He needs an additional diagnosis to qualify for services. or 10. or 20.

I'm already looking at Auditory Processing Disorder, which cannot be evaluated until he is 7. We got the hearing test done, we got the autism "ruled out", now we just need to sit and watch the clock.

I'm already looking at Visual Processing Disorder, which cannot be evaluated ever. well, that may be a bit of a stretch but you know. Gotta find someone who knows what they're talking about and in this area, that's not going to happen. and even if we had a Developmental/Behavioral Optometrist, insurance usually doesn't cover it.

I'm already looking at Sensory Processing Disorder because that's just a duh.

(Is there anything on this kid that works right?)

so, anyway, if he can get a diagnosis for Sensory Processing Disorder, he can get OT through his 504. She (the OT) said his pediatrician can probably diagnose him. which is awesome because I already gave him the reports to read. So, I come home and call the pediatrician. His nurse will have to check and call me back but she really doesn't think he can diagnose it.

So, I'm googling. and the AAP suggests that pediatricians should not use SPD as a diagnosis with the recommendation of trying to determine what underlying other developmental disorder is at play (e.g. anxiety disorder, ADHD, autism spectrum.)

and I am ready to just... uhg!

I was just told at school that he could not qualify for OT because SPD does not tie in with ADHD and now I'm reading that he should not have a diagnosis of SPD because it does tie in with ADHD.

because that's just brilliant. *Love* how the medical community and the schools work so well together.

Is it any wonder most of us special needs parents (or just me, but whatever) *seem* flipping insane and spend most of our time feeling like we're chasing our tails?

and so, I called my husband and put in an order for both alcohol and chocolate. Oh, yeah. I said *both*. because it's that kind of day.

Thankful: Day 9- Alex...

I am so thankful that Alex can read my moods. This morning, we went to the front door to wait for the bus. He's sitting on the bench eating and tossing Fruit Loops while I stand there with my coffee, a frown on my face, lost in thought.

I'm thinking about new information, lies and the truth, reality and make believe, cursing my impulsive nature and my unbreakable habit of judging people and declaring them to be allies too quickly based on nothing more than a kind word and a sweet promise.

I come back to this world and look over to my left and there sits Alex. He gave me a smile like I give him when he notices I'm in the room and says "Hi, there!" The whole time I was off in space, he did not stand up once, he did not run off, he sat there quietly playing in his Fruit Loops.

Wednesday, November 7, 2012

Picking your battles: Goofy's self esteem

I have Goofy's 504 weighing on my mind and this time I'm preparing for the worst, bracing for a fight. I'm armed with information. fueled by indignation. I want to be fair but don't feel that I can afford it this time around. If I had insisted on getting reports before the eligibility meeting, I would have had something to argue with. but I didn't. because I didn't think this meeting would be important enough to argue because I didn't think that there would be a question of him qualifying for an IEP, if not under an educational diagnosis of autism, then under Other Health Impairment for his ADHD. You know how well that turned out.

I've highlighted his clearly stated issues in his evaluation report, I've printed out and highlighted the 504 Accommodation Checklist. The highlighted accommodations coincide with the highlighted concerns, I'm not sure how much of it can be argued but I am ready to argue. The part that has me angry is how very many times it states that he doesn't want to do things he is not confident in his ability to do. If he has difficulty or there is any chance he will fail, he doesn't want to try.

Goofy's confidence is not a problem. He is very confident in himself. He knows he is smart, he is beautiful, he is talented, he is a good son and a good brother. He has no doubt that he is awesome, the reason being because I tell him. Every day of his life, I tell that boy how wonderful he is. Every chance I get, I congratulate him on his effort, on his success. I encourage him and praise him. I do this to tell him that I believe in him. If I believe in him, he believes in himself. However, his faith seems to have been shaken with the changes he's gone through this year being in Kindergarten.

A while back, I was having a talk with the Goofy one about his work at school. One thing he is not pleased with is "wide rolly eyes" when he messes up on his work. When he has trouble following directions, when he does the wrong thing, he gets "wide rolly eyes". I know the boy comes home with some stories that need to be double checked to get the details, but this one is different. I feel it. He's not stupid, he knows when someone is clearly showing disapproval of him- with or without words. Disapproval fueling his fear of failure.

When I am talking to him, I have to guard my facial expressions, body language and my tone of voice. When I am working with him, it is the same. I protect his self esteem because I know how fragile it can be and I know that there will come a day that I will not be able to tell him to believe in himself. I know that he judges himself by the way he is treated and these words, these actions will be forever with him. What I say to him today will be the words he hears when he looks in the mirror 20 years down the road so I correct him without belittling him, I address behaviors not character flaws, I don't give him empty praise which means he knows that I mean what I say and he can trust my words to be the truth.

This is my line in the sand. Of all of the things I think he needs based on expert evaluation, these are the most important:

  • Provide reassurances and encouragement vs correction and criticism at a rate of 4:1 or 10:1
  • Focus on student strengths, talents and accomplishments
  • Catch 'em being good: compliment positive behavior and work
  • Speak softly in a non-threatening voice when agitated
  • Provide opportunities for student to display responsibility and/or leadership role
  • Provide opportunities for student to provide assistance to others
  • Reinforce frequently when signs of frustration are noticed

I think I'm going to have to mention the fact that there are more ways than words to communicate your feelings and these kids pick up on that. Hell, even Alex is fluent in facial expressions because it's such a big part in how we communicate. Be careful what you say- in any way you say it. Your opinion carries an awful lot of weight.

Here are a few links for you:
Developing your child's self esteem
Ten ways to build your child's self esteem
Building self confidence in children

Monday, November 5, 2012

Thankful: Day 5 e-mail

If it wasn't for e-mail, I don't know what I'd do. e-mail enables me to keep up on what is going on with my kids and to find information that I need to help them. If it wasn't for the schools' willingness to use e-mail, it would be a whole lot harder to communicate. Since we've been e-mailing, I am more up to date on all aspects of my kids' educations than I ever have been and we are able to share information to help them achieve success.

A few days ago (or something like that since I suck at time) I got an e-mail from Alex's Occupational Therapist explaining his "grade" in his bilateral integration goal. If not for this e-mail, I would not have known that they were trying to get Alex to feed himself with his right hand. Alex does not demonstrate an overall hand preference but he eats with his left hand, colors with his right hand and refuses to cross midline. because of her willingness to talk to me through e-mail he is now able to rock the fork usage with his left hand (I hope) and I know what they are doing and I can work on the same things at home (not scissors. I am not teaching that child to use scissors.)

Last night, I e-mailed Alex's teacher with his table tap request for "more" and found out that while they are using PECS for "more" and "no more", one of his aides has been working on table tap imitation. After talking to her, Alex's SLP e-mailed me and we talked a bit about how we are encouraging communication. My style's a bit different than their's because I refuse to use alternative forms at home because what we are doing is working just fine. I understand him, he understands me. It would probably be better if we were working on the exact same things but I'm thinking as long as we are working on the same concept, no matter the different methods, he's still getting the point.

Also because of e-mail, as soon as I found out Walter's chest crap was a highly contagious respiratory thing, I was able to give his teacher a heads up on Alex because even though his asthma has been just fine for several years, there's always a chance that it could flair back up. That would be scary if you didn't know what to look for. and knowing what you're looking for makes all the difference in a breathing treatment vs a 911 call.

and because of e-mail, Goofy's OT was able to answer some of my questions about sensory issues vs processing issues with a lot of awesome information- including links to sites to tell me more and point the way to finding help.

These are just a very few examples on ways that e-mail with school staff has been very helpful. So, I'm not sure if the thing I should be thankful for today is e-mail in general or the schools for using e-mail.

Either way... thank you!


Sunday, November 4, 2012

Thankful: Day 4

Goofy's rummaging in the refrigerator. IN the refrigerator.
Me: opening the door, "What are you doing?"
Goofy: "None of your own."
Me: "Would you like some help?"
Goofy: *raised eyebrows* "Mom. I said None of your own."

Alex picks up his glass of water to take a drink and sets it down hard.
Goofy: "Mom, he has a glass."
Me: "He's ok. It's his."
Goofy: *blank stare* and then looks back at the computer screen, "You shouldn't give him glass, he will break it. He needs plastic. You should give him plastic."
Me: "I'm pretty sure I'm the boss. I know what I'm doing."
Goofy: *doubtful look*


Saturday, November 3, 2012

Thankful: Day 2 & 3

Today... Awesome Pediatrician/Staff and Google (can that count as 2 days? Good, because it is.)

I made a decision on what to do about Goofy's IEP stuff the minute I had the report in my hand. The more I go over this report, the more I study the words, the more, for lack of a more accurate word, pissed off I get. It's an 11 page report and there's more highlighted than not or I'd be happy to share it with you so you can see why it annoys me.

Highlighted line after highlighted line, they are telling me they see what I've been telling you, what I've been telling my husband, what I've been telling the doctors. Report after report states the same observations as the person before them.

So, I made my decision, I'm not working on therapy at home, because:

  1. I can't afford outside therapy. Believe it or not, my blog isn't much of a money maker. I do it because I love it and to eventually get a little bit of pocket change to buy teething rings and gas to get to the library. My husband works 2 jobs just to put a roof over our heads and food on the table, in that, we barely squeak by. We struggle with money, same as you do.
  2. I'm not a highly qualified, trained professional. I'd much prefer to hide behind that because of the next reasons...
  3. I have enough going on. I already have a job, I don't need another one. Do you know how hard it is just to make sure these little heathens stay alive from day to day? My entire life is one big suicide watch.
  4. I'm taking some time for me. I want a life for myself, away from my lovely little spawns of darkness. It took me hours to make the decision and I think I'm going to the support group at Alex's school Thursday. among other things.

and, I don't feel bad about my decision because next year he will qualify for an IEP, I'm sure of it. According to OT:
"His visual tracking was poor. He lost the target repeatedly. He was unable to focus on the target even when it was not moving (fixation). He had difficulty isolating his eye movements from his head movements. He had difficulty with eye convergence (ability for both eyes to focus together so that you see a single image). He had trouble following these directions, due to the level of difficulty of this task for him. This can cause difficulty with reading. This can affect academic tasks, because we need both sides of the brain to speak fluently to each other, and this indicates it is not quite a fluid process."

Then there were the many, many times they mentioned his need for repeated, reworded instructions, his inability to follow multi-step directions... on and on.  So, next year when these skills are needed, he will get the help he needs. I am comfortable with this because he is not just being left to fall on his face, we have a meeting Friday to discuss his 504 and possibly add to it. As much as he needed constant repeated directions and verbal cues, I'm hoping he can keep his aide but I'm going to trust that the people in this meeting, the people I know, are going to make sure he is ok this year.

Which leads me to why I am thankful- I dropped Goofy's evaluation report off with the pediatrician because I'm not planning on sitting around twiddling my thumbs until next year, I did mention gathering information, right? The doc is going to look it over and tell me where to go to get help and what needs to be addressed now and what is better for the school to do. And, so that I can have my reports to look for what might help in the 504, his receptionist made a copy. And, while waiting for that, the nurse called to fix Alex's diaper order. And, while waiting for that, the doc and the nurse got prescriptions together for Walter and Goofy. And, while waiting for the doc to look over the evaluation reports, I'm googling the heck out of 504s to see what they are (sucky, but better than nothing) and what they can do. I found an awesome list of 504 accommodations that can be made. 

What would we do without Google and Awesome Pediatricians/Staff?

Friday, November 2, 2012

Guest Post: Blended Families by Tylerism's for the Autistic Soul

Blended Families


Mama asked me to write a guest post about blended families, because I almost have the market on that group. I say "almost" because the only thing missing out of the mix is "his" kids, and I am one of the few in our community of page owners who has this particular life style. Lucky me...? Oh well, it is what it is.

So, what about blended families? They're hard. Really stinking hard. I could only imagine how things would be if my husband had prior children to add into this. At the same time though, on my end, I know it would be ok. But in the big picture the problem isn't the kids. The kids add some chaos, some kids have that whole "You're not my real parent" thing going on (but I think that's a rarity), and there can be issues with getting along (but not any more so than between blood siblings...I know, mine fight like crazy). Tyler has had issues with kids that belonged to girls my Ex has dated, but it's hard to tell what is Tyler's A-typical struggle with kids and what was some pretty bad parenting on their part. So, what's the issue with blended families?

The adults. If my spouse had children from a previous relationship the problem would lie with his Ex. It's hard to come out of a relationship where everyone is happy and doesn't harbor any ill will towards the other. Count yourself lucky if just one of you doesn't, but face it...the relationship ended for a reason. The key is in finding a way to let go and move on, and encourage those around you to do the same. Ending a relationship that was serious enough to include having children isn't easy on anyone, but in the end if the relationship warrants an ending it really is in the best interest of those children (and everyone else) for it to just end.

I have always felt that way. However, in the midst of my own separation and divorce it was a bit harder to recall my outsider point of view. I was angry. I was real angry. I couldn't see how my marriage being over was in the best interest of anyone. It just wasn't fair. Why couldn't he try harder? Why couldn't he love me like I loved him? It  took me some time to realize...I didn't love him. I loved the idea of having this family, but the family I had wasn't the family I wanted. It took some time for me to grow up.

I've been divorced for seven years now. Holy cow! I hold no residual feelings for my Ex. I time and again have said that I wish him nothing short of happiness with someone who inspires him to be a better person. Someone who is good to my son. Someone who can show up to my sons birthday party and not cause problems. I'm not about to go all nuts on some girl just because she is my Ex's new spouse or because she makes me feel inferior with my child. If you are a good enough person to warrant my sons affection...GOOD FOR YOU! I am irreplaceable. I can play nice, I swear.

It's easy for me though. My children live with me. My husband and I raise them. I suppose that makes it pretty darn easy for me to not have those ill feelings and to not be concerned with being replaced. My Ex might feel differently. He's only a passing thought to me every other weekend. He's something I have to work around a few times a year. Maybe that's partly why I wish for him to find someone awesome. So he could be happy, and not be so unhappy about life moving on over here. You see movies where the girl sees her ex with a new wife and family...moving on happily. Leaving her and their child behind. And it's always so sad. Not here. I want that for him.

What about that extra set of grandparents now? BONUS! My father passed away, and my mother lives a good bit away. Largely my husbands family takes place of any other family. When my Ex and I first split up I moved close to my mother and all sorts of other relatives. My children were very close to cousins, and now that we live so far away they can maintain those relationships via Facebook. It's harder than all get out though. we live within blocks of each other. That means we spend a lot of time together on the weekends and during holiday's. It's no secret that my mother-in-law and I have had our issues. She is a pretty strong personality, and I tend to be passive aggressive (but certain things will flare me right up). If I get upset I'm most likely (after getting home) to say something like, I'm never going over there again - from now on you can go without me vs having a confrontation with her. She has her ideas and I have mine.

I love my husband's family. All of them. That does not make it any less annoying when my mother-in-law slides Tyler a donut at 8pm and then acts like she didn't know he shouldn't have had it. Or talks to my daughter about dating. Oooo or when she says "ask your mother" o.O Your son could answer that question and his name happens to be DAD. Can we just hang out? For no reason? And NOT judge my parenting skills, housekeeping skills, or my wife skills?

Likewise, can my Ex-husband for a change listen to me and follow through when I talk to him about our child's needs? When I tell you he NEEDS to be in bed by X time, could you just do it? When I tell you he's in trouble could you please not allow him to do X for the weekend, could you just stick to it? Would it be so much to ask for you to to NOT talk trash about my husband to our kid? Don't even get me started on his extended costs due to his autism. It probably is, so I just give up. I don't recall the last time I tried insisting on bed time schedules and routines and punishments. It's just exhausting. So instead I fight the transition problems that it causes and try to correct any falsehoods told.

I hope you see...I don't have it easy. I struggle against many problems brought on from having a blended family. It's all about your state of mind though. I choose to not let it bog me down. I fight against THAT. Sure sometimes they win. Mostly only ever momentarily. My sanity and happiness is worth everything to me. Make it a priority to you!

Soooo, my Ex husband doesn't like me and talks some nonsense about my husband, and my Ex-mother-in-law talks smack about me, and my mother-in-law can sometimes drive me nuts. Sure it makes life a bit difficult, but it's better
than living your life in an unhappy marriage where you teach your kids that living that way is acceptable. I want my daughter to find someone like my husband. I want her to have a family like our family. (That is not to say that I do not want the same for my son, but let's face it - girls are more likely to end up in abusive/unhealthy than boys. So this is just an above and beyond wish for her.) Life isn't perfect. BUT you can find happiness anywhere as long as you are looking inside yourself for it. Blended families are NUTS, but they can be far better than staying in an unhealthy non blended family.

Do keep in mind that any situation has the potential to make at least one person unhappy when you add more people to the mix. Everyone is different. Not everyone can/will get along 100% of the time. However, if you weren't getting along within the smaller group you are at least adding the possibility of getting along with someone by adding more people.

Thursday, November 1, 2012

Thankful: Day 1

So, I'm getting my head out of this stupid report (I'll get to it) and glancing around online I keep seeing this whole "Thankful: Day 1" horsehockey and I'm like really? I haven't even recovered from Halloween and you want me to be thankful already? 30 days worth? HA! ok, I can do that.

So, Day 1... Excedrin Migraine.

Mhmm. You heard me.

I woke up at 7:30 this morning. 15 minutes before Alex was due to be swallowed whole by my big yellow savior (lowercase s). I'm running around being all OMG! omgomgomg!!! wait... what was I doing? Oh, yeah. omgomgomg!!! and Thing2 comes bouncing up the steps. What's up with these boys and bouncing? Shouldn't that be a preteen girl thing? Stop being so damned frisky all the time! especially when I feel like I have the worst hangover of my life. Not that I had the privilege of drinking last night. but, anyway, the boy missed his bus. Thing2, not Alex. because I rushed around like a mad woman to get that boy on his bus because I have no gas and I sure as hell plan on having some sort of almost quiet today. and, since I'm in a hurry and feeling hella awful, I ask Walter to get my coffee for me, please please please, being sure to specify 2 spoons of sugar and no more. except I forgot to put a limit on the milk. you can imagine, I'm sure. but desperation, I choked it down.

I get Alex on his bus and try to get Goofy ready- aka nagging- and the Tiniest Supervillain locks herself in the bathroom. Now, I don't know if you were around then but remember a few months back, the only key I have to the bathroom broke off in the lock? By the time we convinced her to open the door, my mousse was decorating the entire floor, rug, dirty clothes, toilet, tub, sink, and her.

Then Goofy took a stand. He did not want "food" for breakfast, he wanted candy. it's his candy and he can have it if he wants it. argue, argue, whatever. 60 seconds left on the clock, I hand him his pill and turn around to get his backpack. My freaking back was turned for a second! an instant! a blink of the eye! "Oops, I lost my pill!" what!? searching and searching, I can't find the damned thing. Are you sure you lost it? "Um...?" Whatever, let's go. Now. We have to go and made it just as the bus was pulling up.

It wasn't too much longer before Thing1 came to get Thing2 to take him to school and the little suck up brought me 3 Hershey's bars. I sure do love that boy. However, this is also the time I get a phone call and he gives an uh-oh and a laugh as he hands me my phone and informs me that it's Goofy's school calling. I'm on the phone with Goofy's nurse, on my hands and knees searching through half of a box worth of scattered Apple Jacks, checking corners and crevices and swear to her I can't find this pill, my back was only turned for a second and I can't find it and I don't know if he took it. She agrees that it would not be wise to give him another one just in case.

Thing2 comes home from school with a handful of mail. I'm eying the stack warily and ask him if there's anything interesting because I'm waiting for something. He says no and tosses it on the table. and there it is. Right there on top. 

From: the SSD.
To: the parents of Goofy
just breathe. I grab it, I rip it open and yup. "Enclosed is a copy of your child's Special School District Evaluation Report summarizing the results of the conference held on October 23, 2012."

I'm trying to read and having a hard time of it with my head pounding and kids screaming in the back yard. Then I get a text from the neighbor. "TS is playing with a dangerous tool." WTF? Are you kidding me!? How would she even have access to a "dangerous tool"? Play time is over, lay down and watch TV, not even kidding. No one is ever allowed outside again until all "dangerous tools" are accounted for and secured.

I'm trying to read and having a hard time of it with my head pounding and kids screaming in the bedroom and others are trickling in one by one.

All of the kids home, I call the pediatrician to ask if he will please look at this report and tell me what to do, I get to drop it off in the morning- IF I get gas.

I'm trying to read and having a hard time of it with my head pounding and kids screaming all over the house and Alex being full of piss and vinegar throwing things around. By "things" I mean cups of water, cups of tea, handfuls of cereal, pizza, a really heavy glass bowl and the cat. then he choked on a Halloween toy and I called an end to the craziness. I put him in his room to calm down and let me deal with the damage left behind.

Get everything under control and I'm trying to read and having a hard time of it with my head pounding and kids screaming all over the house and Alex is full of piss and vinegar and then miracle of miracles, adults start showing up and I'm on my knees praising the Lord with raised hands, tears streaming and joyful shouts of Hallelujah!

I leave the kids to do as they will- terrorizing other adults and I'm trying to read and having a hard time of it with my head pounding and kids and adults screaming all over the house and Alex is full of piss and vinegar and Big D and his uncle having a loud conversation right in the same room and Big D tells me I need to fix my bank account. Seriously? Why do you keep locking yourself out of my account!? Knock that shit off!

So, I'm trying to call this number and all that stuff and Big D's all calling me grouchy and crap and I'm all Dude, listen and I'm telling him this and that and just barely not throwing my effing phone because it wants an access code and I don't have a freaking access code and it won't let me out of the access code and he's all well, you do it like this... well, then you do it! I QUIT!

So, he calls and I'm going through this automated thing and I'm telling him what's going on with Goofy's dumbass school crap and TS starts whining really freaking loud right at the top of an open staircase and I may or may not have suggested someone nudge her in that general direction to shut her up. I'm not exactly sure how long the lady was listening or how many times she tried to get my attention. *stellar parenting* at this point, I wasn't sure how smart it was to give her my name...

Then, I'm trying to talk to her and Big D's telling me what I should tell her and talking to Uncle about I don't even know and TS is whining and the other kids are screaming and jumping and running and throwing and Alex is all wound up... and I'm really having a hard time figuring out how to get into my account because she's quiet and they... are not. But, we got it. In the end, it all turned out just fine but next time he locks himself out, he's on his own.