Saturday, June 30, 2012

Parenting Decisions

I fully vaccinate all of my children (except the flu). I don't do the diet. I don't do bio-med. I don't detox. I do not do these things because I don't believe they have anything to do with Alex's autism. I don't believe that my child needs them. I do not believe *he* can be healed of *his* autism.

I don't do Homeopathic Treatments. I don't do Mindful Parenting. I don't *willingly* participate in Attachment Parenting (specifically, co-sleeping). I don't do Authoritarian Parenting or Permissive Parenting or Uninvolved Parenting. I just parent. My way.

I don't spank my ASD child, I don't spank the teens or the pre-teen but if Goofy threatens to stab Walter with a sharp knife that he has in his hand (true story), he will get a smack on his butt. I don't spank with any kind of regularity or for petty things but when it comes to safety issues or major violations, sometimes a stern "No." and 6 minutes in time-out are not going to cut it.

These are my choices. These are my decisions. These are things that it is my right and my responsibility as their parent to decide for myself. I appreciate input, I appreciate suggestions on how I can parent better, what works for you so I can try for myself and for my kids. Why you do, why you don't and what you do instead. As a parent, you never stop growing and learning.

I enjoy hearing "why" and "how", but I absolutely detest the word "must". All of these things that I don't do, I do not speak out against. (Except bleach because that's just stupid.) The ones I do, I do not say you "must" do this the same way. My parenting is not right, but it's not wrong. It is mine. It is what it is. On my page, I enjoy sharing your stories on why you don't vaccinate, what the diet is doing for you, how bio-med has changed your kid's life. I like hearing about your parenting styles and sharing your advice. I enjoy hearing your experience but I do not enjoy being told I am wrong for not doing it your way. Or that I "must" do it your way in order to solve the issue I'm having.

Your kid takes off running, you yell "HALT!", the kid stops. Their kid takes off running, they yell "STOP!", the kid keeps running so they have to physically stop the child. Is it because they didn't use the exact same word you used? Was their way wrong because they didn't do it your exact way? or did it just not work for them so they needed to try something else? Were either one of you wrong in your approaches?

Autism is a Spectrum. My autism is not yours and yours is not mine. What you have to say will help someone, but so will what I have to say. We each need to choose on our own and have that decision respected. We need to present our information as our own experience to let others know the options are out there but at the same time understand that just because it worked for you, does not mean it will work for them. If it doesn't work for them, it doesn't mean that your input is not appreciated or that it won't work for someone reading the post, not involved in the conversation.

Thursday, June 28, 2012

Goofy, LD and awesomely creative solutions.

These kids, man! Being stuck in the house, even for a day, is not good for my sanity. Question... what do you do about tattling? Because even with the serious temptation, I'm pretty sure shoving a sock in their mouths secured by duct tape may be a little extreme... Which brings me to the first mama-needs-a-drink moment of the day.

I have this constant habit of taking on the role of bad guy whether it's deserved or not (mostly deserved) so, anyway, we ran into a KAHFOOTY problem. or dove in head first. whatever. I'm not sure who did what first or what the initial issue was and I really don't care but I had 3 people running to tattle. In no certain order... Goofy's smacking LD and LD's throwing books at Goofy (boy's freakin lucky they did not belong to the library). Ok, fine. You- go watch TV on the couch. You- go watch TV in my room. You- go away. They retreat to their separate corners. Then later, the LD wants to watch TV with the Goofy one. The Goofy one will not open the door. To deter yet another munchkin fist fight and spare the LD's fragile heart, I took responsibility for Goofy's decision. No. absolutely not. Keep. All. Hands. Feet. and Other. Objects. To. Yourself. You choose to not follow the rules, you choose to take the consequence. Until you can play nice, you don't need to play together. matter settled, disaster averted. Right?

Until not even 2 minutes later Goofy comes out wanting to play with the LD and I am caught in my web of deceit. What do I do? I can't allow Goofy to play with the LD when I just laid down the law for LD. That's like... favoritism. maybe even blatant targeting. but I didn't even care in the first place! They fight, they take the punishment, they move on. It's the way it goes. all the time. every day.

and there goes Goofy with that damned wand. If I ever find that thing and it's not in his hand, I'm totally trashing it and denying my involvement in it's disappearance.

So, crap. I have to tell Goofy the same as I told LD. He goes on, does his thing for a minute then sneaks past me to play. and I let him. HA! I win. :) I think...

Wednesday, June 27, 2012

A good day. I think...

Today has been kind of a roller coaster of emotions. I got Alex on the bus- woo! Yesterday he missed school because I overslept and didn't have a car to take him to school in because my car's getting worked on. but since I have no car, we didn't get to go to story time. and the Little Dementor was not happy. Poor little guy. He gets to where he likes going, he was promised before he went home that i would take him the next Wednesday he was here and I couldn't. The Queen came visiting around 11:30.

There's a whole big custody thing going on with her. It's exhausting. I do have to say that they are dealing at least slightly better than myself and Alex's father did. I haven't heard any screaming matches, *yet*. and the other parents (just because I have no better way to describe them at this point) haven't jumped in, *yet*. Hopefully, it doesn't get to that point. But this is where part of the rollercoaster comes in. well, not the custody issue, which did be a thing for a minute, but the Queen. The girl scared the hell out of me!!! Seriously! First she was walking around the kitchen, doing her thing while I was cleaning up and shut her fingers in the cabinet door. This is a theme today, must be, because Goofy also shut the LD's fingers in the door. In both cases, there was a major amount of screaming and crying involved. But the Queen... she can't just let it go at that. Uh-uh. When that girl decides to do something, there's no halfway about it. She's walking now. unsteadily. You see where this is going already, don't you? Well, this is what happened...

She shut her fingers in the door. So, I gave up on the kitchen and moved to the living room. I got most of it done while she was toddling here and there, strutting her stuff. She worries me with that toddle-strut but I'm a worrier anyway. I saw that she had Goofy's hard plastic magic wand and I was going to get it from her because when I saw her walking with the wand, I got a very distressing image of what could happen, when her Mom called. Sufficiently distracted, I forgot. I screwed up. I get off the phone and go on vaccuuming the floor forgetting all about the wand. Next thing I know, she falls. Crying. Blood. and I mean blood. Remember not that long ago, I was patting myself on the back, loudly tooting my own horn for managing to get a bandaid on Goofy's scraped toe? Yeah. I freaked. she was covered, I was covered and she was filling up a kitchen towel quick. I call Big Daddy because I don't know what to do! Should I call her mom? her grandpa? Take her to the ER? Oh, shit!!! No carseat! He reminded me that a carseat wouldn't help because I had no car. *F Bomb*. He talked me down, the bleeding stopped, the crying didn't. He's all like *do not call her mom*. At the time, I was all *are you crazy!? are you insane!? Why would I not call her mom!? She's her Mom and there's blood everywhere. EVERYWHERE, I tell ya!! It's bad. so bad. everywhere. and she's crying!!!* This is serious. Once I calmed down and look back at it, yeah. he was right. Me calling her mom flipping out... probably not a good idea. But I really wish someone had called someone. I was, whew buddy, I don't know if there are words to describe the shape we were both in by the time he got home. But, all's good now. Doc says it will be healed up by tomorrow.

Then I get good news. Wonderful news. Remember I told you I friend requested Queretaro? Walter's father's possible brother? He accepted my friend request!! I sent him a message and i'm waiting to hear back. hope it doesn't end up in his spam folder :/ maybe I'll hear something soon because this is not something I want to post on his wall.

THEN. It's not over, that's not it. My boys (Walter and Goofy) got 2 invitations today! Tomorrow they may be going with The Girl to swim and watch fireworks! So exciting. They went to her house one day... was it Sunday? To hang out with her and her family and they had a blast! She said they were surprisingly well behaved (surprisingly is my word).

Then, my brother shared a text message with me. My mother and her husband wanted to see them. This is the first time in around 3-4 years. I'm nervous about Goofy but I showed him pictures of where he was going and who he was seeing, quizzing him on Grandma and grandpa- which he rocked. Now he's all excited because he has 3 Grandmas. He has Big Daddy's mom and the Bosnian Grandma next door (I didn't know her name, she moved recently) and now he has this new Grandma!!!

All in all, an emotional day. But looks to be a good one, overall. My boys seem to be gathering a family. Finally, they have more than just me. They are on their way home now. I'll let you know how it turns out ;)

Tuesday, June 26, 2012

Where's Waldo- The Mexican Edition

Now, usually, I don't get deep unless it's Alex or autism spectrum related. I try to respect the privacy of the other boys and not air our dirty unmentionables. But, I'm getting to the point I'm not sure what to do because I have exhausted every lead I can follow over the years. and, I guess I ought to give a reason for my absence the past few days.

Walter wants to meet his father. Simple enough you would think, right? Except when the man travels cross country and beyond the borders of the country and there are several places he *could* be living. and one of them, Mexico, people have limited internet access or better things to do than hang out online seeing what everyone else is doing and are totally not prone to gossip. unfortunately. sheesh, man. Who doesn't like to gossip!? but, anyway, I get stonewalled regularly. I can understand why but it's still frustrating because when I start searching, Walter knows it. Not because I tell him, but because he knows me and my ways. So, when I look, Walter knows it. When I come up empty, Walter knows it.

I have a plan, a course of action plotted out. I haven't come away from my searches empty handed, I found what I think must be a brother in Queretaro (since he shares both last names and comes from the place of father's birth), a likely brother in Alabama (most likely since his first name matches the name I was given, because he lives in the exact town the father left for- to be with his brother who had a job for him- and the last name is the same as paternal grandfather's last name), a potential family member in Louisiana (who listed both probable brothers as family), a possible friend in Texas (who left a comment on Queretaro's picture of his niece naming father as the possible father), and old friend in St. Louis (who's address he used for the last public thing the man ever did).

The old friend in St. Louis was about 3 years ago. She said he got married and moved back to Mexico, which his presence there in 2002 was verified by Google Mexico, but that she hadn't heard from him since. She did, however keep the pictures of Walter instead of returning them, which I choose to take as a good sign. I'm following any link in people I can find before asking for help. Alabama and Louisiana ignored my friend request (who accepts friend requests from strangers?) and the message I sent to Alabama most likely ended up in his spam folder since we are not friends (click "message" and it's under "other", who knew!?) I've had that problem a lot. I'm not sure that Queretaro has been online recently so I can't say that he did or did not get the request and/or message.

I could advertise online but, again, worried about the effect that would have on Walter and his paternal family. My goal is not to cause embarrassment and uproar.

Child Support Enforcement tried to find him, ending maybe 7 years ago, and came up with some good information but no father. I could file again since they have access to things I can't search but I don't really want to file for child support. I'm not looking to cause him trouble, I just want Walter to have the opportunity to get more than 2 pictures and a name. or at least for father to man up and say, "No, thanks." and sign the adoption papers.

I could hire a Private Investigator but, that involves quite a bit of money. I'd rather do what I can do for free and then assess that option when the time comes.

As far as adoption, I *could* just run an ad in the places I believe he could be but I can't. It's not right. Not ethical. His leaving was not entirely his choice, not only his decision. There were 2 of us in that relationship. I could have gone with him when he moved, but I didn't. That was my choice. I cannot take away his rights as a father without him being part of that decision. He made it clear throughout our past communications that he intended to meet Walter at some point. As the father, that is his right. If I cannot find him, Walter will not be adopted. If he wants to be part of Walter's life in any way, Walter will not be adopted. and, Walter has, and has had, a big part in making that decision. It's his life just as much, or more so, than mine or his father's. He still has me and his Dad, that will never change. The potential adoption is more for security than any type of familial status. He knows that. he is happy and secure without legally being bound to my husband. but he's missing something vital. He's waiting on something essential.

Even if it's not his father, it would be good for him to have family. Walter is not white. Walter is hispanic. Mexican American. and he knows it. He's starting, over the past few years since starting school, to think that may be a bad thing. He's embarrassed of his ethnic heritage. He seems to think that it makes him somewhat less than the people around him. He sees it as a limitation on his possibilities. his self worth. The people I point out to him don't matter because they are not his family. The connection they have to their ethnic heritage does not apply to him. It breaks my heart that something that should be an area of pride and identity is more of a black mark for him. I cannot change his perception. I am white. How can I identify with him when I have never faced the same issues due to my coloring? How can he identify with other hispanics when he doesn't even know any? He hungers for his father, the person who will understand. who can give him what I can't. For this, I will not give up. Until then, we are stuck in limbo, searching for a man that doesn't seem to exist.

So, this is what I've been up to the past few days. Trying to figure out what to do next. When to take the next step. How long to wait for responses before I try again. stuff like that.

Thursday, June 21, 2012

Back to the Library.

I've been planning to write this post all day. thinking- eh, in a minute. well, fast forward 5 hours and my minute's about up. my kitchen is trashed. There are Fruit Loops scattered from here to there dotted by the baby's Little Puffs. Alex is satisfying his tactile and auditory sensory needs by seeing how many he can crush individually under his foot before Mom takes them away.

alright, had to put a stop to that when he added 32 ounces of soda to the equation. not to mention a good puddle of milk from the cup he knocked over. These are the stims I haven't seen in quite a while and, honestly, I did not miss them. not even a little. wonder what's got him so wound up? 

So, anyway, today. Today was the big day I have been waiting for for so, so long. The Goofy child got meds. Say what you want, I don't care. I admit, I am not woman enough to take the punishment dished out by unmedicated ADHD. The doctor's visit, alone, is more than enough to demonstrate that point. I was a freakin wreck by the time we walked out. Not sure how I walked out somewhat calmly instead of wild eyed and singing "I'll be happy to see those nice young men in their clean white coats..." because I totally would be...

 Of course, this was after being up all hours of the night again because now, not only is the Goofy child's throat sore, his ear hurts. The doctor says ear infection. both ears. more so the right than left. So, he got concerta and an antibiotic, Walter got Concerta and Intuniv and Alex ended up with a refill on his Miralax. By the time we walked out, I was swearing, there was no way, no possible way that I was going to take this kid to story time. uh-uh, man. Do I look stupid to you? Apparently so because by the time we dropped off the prescriptions and made it back home, I was hollaring at Walter to get ready or we were going to be late.

We got there 15 minutes early and I decided to switch things up a bit. We went to get books BEFORE story time. I'm not sure how it worked out, if it was easier going before to get it done and over with or after as a reward for good behavior. Today was extremely easy because it was just Goofy and Walter. The Little Dementor is with his mom this week, I'm not getting the Queen until 11:30 and with Alex being back in school these few weeks it's giving me a major break and a bit longer to figure out what I'm asking for in the "suggestion" I'm to submit for autism friendly story time.

I did a little thinking, a little observing. Trying to figure out what we would need. Inclusion is big. My entire purpose in getting out of the house this summer, meeting people, doing new things is to try to do my part in creating an inclusive community and educate people about autism. Having a separate story time would not fit that goal. However, there are certain accommodations that need to be made. Such as...

I took a look around the library, well, the sections we were already in. I will have to go back without small children to get more of a grip on the ideas floating around. One thing I noticed today that would be a good step in the direction of autism friendly is the seating in the teen section. I'm not sure about that because although some of our kids are calmed by deep pressure, not all of them seek the input in the same way. Alex could possibly sit there, not promising that, the boy's unpredictable. Goofy, on the other hand is entirely predictable, he does not see comfy seats, he sees crash pads. These would wind him up more than they would calm him down.

So, now I'm thinking autism friendly may be more about the attitude, ages and expectations. Our kids are not the quietest kids. and they don't always wait their turn to speak. The story time they already have for the 3-6 year olds is awesome. The Children's Librarian is a great story teller. she's good at getting the kids involved and interested in the stories. The whole 20-30 minutes (which is the perfect length of time) is not just story telling. She has silly songs that get the kids moving and finger plays to get them giggling. The downsides of the current story time are the age limit and the expectations of appropriate social interaction. So, the list I have come up with so far is along the lines of...
  • With the the age "limit", No one has said anything about me bringing a 10 year old but, still, I feel like I'm crashing the party. Since it clearly states that the ages are 3-6, I'm sure there are a few parents who don't even attempt to take their much older kids who would love the same activities. The proposed story time could be for kids of all ages. For this, it may be more beneficial to make the "inclusive story time" weekends or make it a summer activity since those are the times we NEED things for them to do.
  • As far as social interactions, it would be nice to know that when my child scoots all the way up out of line to her feet to pat her leg and say "hey. hey. excuse me. ummm..." that the people around me would understand that it's not all bad parenting (maybe a little, but not ALL). Or that if he starts talking to his neighbor, it's not because he isn't interested in the story. Or when the clapping, flapping, need to stand up and jump, let out a good squeak every once in a while happens, well, some of the others on the room would get it. 
  • If it was labeled and advertised as any age and autism friendly, the parents not from our world would have a better idea of what to expect, I think. That would go a long way in attitude or our perceptions of attitude, since we face it so often that it doesn't matter anymore if the judgement is real or perceived, we feel it just the same. The issue there, that I was having trouble finding a suggestion for is, our kids don't all function on the same level. Your 10 year old Asperger's kid probably is not hooked on Sesame Street and rhyming books. My 10 year old Severely Autistic kid is. Then, we have the supposed neurotypical kids. Thing2 (ADHD) has an IEP in reading comprehension. He wouldn't go to story time because he's a little big for that now that he's 17, but when he was smaller? Walter's a reader, and he's pretty swift but he hasn't finished a book in weeks. He likes the books and wants to read them, but his ADHD gets the upper hand on that. Being all ages and different reading levels would be beneficial for kids like them. Then I was reminded of reading levels. Reading levels are universal, are they not?
  • what is done with the kids could vary depending on reading level instead of age group. For the younger kids, songs related to the theme of the day and such as she does now. For the next group, they could have a talk about the book and maybe come up with suggestions for what might happen with the characters down the road or alternative endings based on what happened so far. What do you think would be a good activity for your child?
  • Inclusive would also open it up to other diagnoses. We're not the only ones with challenges. but, autism friendly is pretty much everyone friendly, right? That's a real question because I'm assuming and assumptions aren't always correct.
  • Also, from what I gather, when it comes to "inclusive" and "Autism Friendly", people are willing to travel. Not unreasonable distances, of course, but from farther than they would usually travel for story time, in order to access activities to entertain or enrich their children's lives as well as gather with other parents who understand and to give their children the opportunity to socialize with other kids "like them". This would benefit the Library by reaching an audience they didn't have before.
What do you think? What do you need?

Tuesday, June 19, 2012

My Little One. So Sweet.

I love my children.

The night before last the goofy child said he had a sore throat. Big Daddy told him it was all of the screaming he did all day, Goofy didn't mentioned it again. Until we got home yesterday evening. We had taken Thing2, His friend (I will call him "Ike" because that's what my brother has been calling him, because it's so much easier to spell out than the 2nd Musketeer and because the 3rd Musketeer hasn't been around much) Walter, Alex, Goofy and the Queen to get pizza. Of course, we were a busy bunch and there is a small amount of chaos that just goes with having so many people but Goofy has been doing wonderfully. I have to tell him when we are "in public" and explain how both the pizza place and Wal-Mart and McDonald's are ALL "in public" when they are not the same place but once it's clear that we are "in public" he understands that the "in public" rules apply and has been doing much better staying calm for that time.

Since we had so many kids, we had to take my car and Big Daddy's truck. I had the 4 smaller ones since the carseats were already all in the car, he had the 2 teens. He had another stop to make on the way home and there was no reason for us to follow him so we came straight home. and Goofy was MAD. heartbroken. his tiny soul crushed. He wanted his Daddy. his throat hurt. He didn't feel good. he just wanted his Daddy. I tried to figure out what was wrong with him that his throat would hurt to see what medicine to give him. No fever, no cough, no mention of insanely itchy ears... nothing. Just a stuffy nose and sore throat. I tried cold meds. He cried all night. all. night. and kicked me. repeatedly. I finally get to sleep around 2am with the promise that he can see the doctor not in the morning but the next morning (explaining time is difficult) because he already has an appointment.

This morning, I got up in enough time to give Alex a quick wipe down in the shower (not a full shower but hitting the important spots, my Gramma used to call that a PTA bath) and throw some clothes on him. I saw that the shirt was too big and had several small bleach spots on the back but it was too late to do anything about it. Goofy came to see why I left him in bed alone and brought his sore throat and hoarse voice with him. I explained again that he could not be outside in a diaper. I don't want to explain that there's a stigma that comes with bed-wetting because I don't want him to feel embarrassed about something that he can't help (it's a family thing and he will outgrow it before he hits middle school) so I made it a rule that outside, he has to have clothes on. No arguments, he went to get dressed.

After Alex left, I asked the Goofy one if he was still tired, if he wanted to go lay down. he asked if I was sleepy and when I said yes, he said "Well, come on, then." and we went back to bed. He stayed with me while I slept. I woke up a few times to check and he was right there beside me, watching cartoons.

Sunday, June 17, 2012

My Dad

Yup, annoyed again.

Ok, so, I've been MIA for the better part of 2 days now. Yesterday (Friday), I did it on purpose because I just wanted to be with my kids, ya know? Just us. I love you all, I love sharing my stories with you and hearing yours in return but every once in a while, I just want quiet. I know you get it, so I didn't think taking a day to just chill would be a big deal. I figured I'd check in here and there and share what you had to say, if you had something to say. it's cool, right? because you all are living the life I live and you totally get it.

Well, then yesterday turns into today. Today didn't start out too badly. Big Daddy took the goofy child out this morning and let me sleep until the "goodmorning. goodmorning. goodmorning. comeonin!!!! comeonin comeonin comeonin... hello? hello?" alarm woke me up needing a clean diaper and some food. All's good. we're hanging, watching some Sesame Street. Mama gets coffee, sitting with her baby and time to read her book. It's nice. I like it.

Then, Big Daddy comes home. Wondering, yet again, just like every other weekend, why he thought it was a good idea to take that child with him. He doesn't listen, he won't stay close. He hops and twirls and touches things and goes up to complete strangers to strike up a conversation. The worst part about that today was that they were in the parking lot of the auto parts store and he was walking up to their cars. I'm not going to say a word and Big Daddy knows I'm not because I don't want another discussion on why it can't possibly be Asperger's. and his way of telling me he's starting to understand my concern is the tone in which he says "Yeah, I know. 'There's nothing wrong with him' " which is what I tell him every time he complains about Goofy's behaviors because it's what he was constantly telling me when I started pointing out the boy's ... atypical behaviors. I'm already starting to get irritable because of the conversation and Big Daddy not really knowing how to be patient with either Alex or Goofy when he gets overwhelmed. and I really don't want to have this conversation again. Just because his only current diagnosis is ADHD-NOS, doesn't mean crap. The doctor even said he needed more than one source (parents) to diagnose anything but ADHD-NOS and Goofy only had 2 weeks of inappropriate social interaction which wasn't even documented. but whatever. I know what I'm waiting for and I know why. I don't need to keep explaining my thought process to someone who doesn't even want to hear it.

We go to Home Depot to get the gas grill Big Daddy's been wanting for a while for his Father's Day present. Now, mind you, I'm already slightly annoyed. I didn't want to try to work on walking Alex through the store (we've been practicing) while also trying to keep track of the Goofy one and listen to Walter's unmedicated observations so we got a cart. The problem with the cart, the reason I want a stroller is Alex doesn't sit well. especially when we stop moving. and we were stopped for quite a while with Big Daddy comparing grills and trying to decide which one he wants. I was trying to watch the Goofy child and keep track of what he was investigating and who he was chatting up. Alex stands up. in the back of the cart. that has wheels on it. I'm holding the cart with my foot, knee and hip and holding Alex with both hands. I make eye contact. "Sit. Down." he's considering. "sit down, please." he's still processing. "Sit. Down. Now." Big Daddy realizes I have a problem and comes over to help. both of us have a grip on the cart, both of us have our hands on the kid. Big Daddy says, "Sit down." and then this woman... *sigh* ... this woman who is wearing very stylish clothes with her perfect hair, drool worthy shoes and quietly confident composure, who obviously works there doing something important looks over at us and tells Alex, "You need to sit down." Just plain and simple. as if it is sooooo flippin easy. as if her words should be obeyed without question. at this point all of my patience is reserved for my kids. I have none left over. I'm not sure if it was the "*duh*" look I shot her or the fact that I didn't say a word but she decided to turn around. We did finally convince him to sit down. for the moment.

and due to no patience, I skipped an autism awareness moment. Didn't even think to hand her my card.

I'm starting to wonder if I can deal with this whole educate the world crap. I don't want to be nice. I don't want to be understanding. This weekend I want to scream and yell and tell them all where they can go with their assumptions, self righteous arrogance and quick judgements. This weekend, I just want to kick the crap out of that soap box, stomp it to pieces, then *dare* someone to say something. This weekend, I don't want to go out into the world and make a path. I don't want to do my part to create an inclusive community. Why should I? I feel like I talk and no one listens. What's the point? They say they understand but they don't. and here, I'm not talking about the blog or the page, I'm talking about other people. outside our online autism community. They don't want to know. until it affects them. Why do I keep explaining to people who don't have an interest in learning? Why fight to be equal to people who need to feel superior?

Because that's my job. It's what I do.

for the 2,395 families on my page (personal profiles). for the innumerable other pages, the countless families on their pages. For the ones who don't have internet access. For the ones who have no support. for the ones who can't speak for themselves. For the ones who are sick and tired of standing on their soap boxes just to be ridiculed and have insults hurled at them because they would dare speak up for something so inconsequential as equality for someone so clearly inferior to the mask of perfection that they carefully apply every morning. The ones who speak just to see their words fall on deaf ears. For the children we try so desperately to protect.

Not just for Alex but for Goofy, Sister, for Bam, for Josh, Allison, Tyler, Max, Little Miss, Chloe, Henry, Evan, Red, Blue, DJ, Max, Ty, Olivia, Dar, Jay, Kyle, Trey, Roger, Bean, Brandin, Jamsie, Puppy, Ally, Xavier, Sam, Ben, Tori, Aidan, Robert, Joshua, Annie, Boo, Logan, Christian, Nickolis, Austin, Jordan, Sean, Addi, Alex, Dallas, Andrew, Kendall, Emerald, Alex, Nicolis, Diego, Ethan, Collin, JT, Gage, Riley, Arron, Emerson, Lynkon, Zachariah, Dylan, Peter, Ewan, Damien, JB, Cayden, Oscar, Dawson, Brooke, Liam, Maddy, Serena, Garrett, CJ, Kahler, Danien, Sean, Tito, Bubby, Destroyer, Demolisher, D'Angelo, Jack, Angel, Logan, Jorge, Patrick, Tristan, Jamil, Thomas, Garrett, Sean, Ethan, Neo, Brodie, Jackson, Deliala, Jake, Syd, Aris, Carlos, Liam, Grace, Little Lady, Abram, Jim, Maisy, Gabriel, LJ, Ethan, Finn, Jeremiah, Reilly, Hayden, Skylaar, Curtis, Jack, Sam, LJ, Isaiah, Duane, Lulu, Tristan, Jacob, Isabella, Gabriel, Killian, Raven ....

When you decide to stand up for something, it always helps to know what you are standing for.

Thursday, June 14, 2012

Monster Style Papa (with a Side of the Distance)

Hello, my name is Shawn Colton and I’m working on a book called "Legends of the Boo-Monster" where I tell the story of a little monster affected by "the distance," this fantasy world’s name for autism. The book is mostly a sweeping fantasy surrounding a little fella named the Boo-Monster and his family as they come to realize that the Boo-Monster is inexplicably linked to a prophecy that threatens nearly three centuries of peace and prosperity on the Continent of Monsters.

The heart of the story is about a father’s love for his son and the uniqueness of that son’s mind but set in an adventure story setting with plenty of fun, derring-do and some rather serious business as well. It’s a fine line to walk but I think I’m doing pretty well.

The book will also include occasional "reality checks" where I tell the story of this world’s Boo-Monster, my son David, and his life since he was diagnosed with low functioning autism at 15 months. I’ll let kids and adults both know they can jump ahead to the next fantasy chapter if they can’t wait, and come back to read the "real" stuff later.

The man I named my son after, David "Ragz Dandelion" Hanson is responsible for the art in the book, and I’ve included some here.

We’re funding this story through a Kickstarter campaign and as of this moment there are only sixteen days left to raise the minimum funding.

On the Kickstarter page you’ll find a trailer with a few faces that you might recognize; my appearance on Autism-Live promoting the project; and a link to the very first few pages of the book. You’ll also find out much more about the project itself, as well as what you can do to help.

Since Mac was one of the very first people to respond to our call for help in promoting the book, I’m also giving her an excerpt from the "Legends of the Boo-Monster". I edited out most of the stuff that wouldn’t make sense to a reader that hadn’t read prior chapters in the book. So without further ado, I give you a little bit of what it’s like living on a Continent of Monsters.

Excerpt from "Legends of the Boo-Monster"

We had one of the few monster homes with a fence surrounding it. I imagine many parents of distant children took the same precaution. One of the reasons why I wasn’t in a hurry to see if Boo-Monster could fly was that I didn’t want to have to build a cage with a roof around the house as well.

I opened the gate and Boo-Monster let go of my hand and headed, at full gallop, straight to the playground.

Rainbow asked if she should fly after him. I told her it wouldn’t be necessary. Rainbow looked nervously at Selana for a conflicting opinion. "Don’t look at me," she said. "Daddy’s the outdoor Boo-Wrangler."

I nodded. "Selana’s the brains of the operation. I’m the muscle."

When the Boo-Monster was first diagnosed with the Distance we attended a support group of parents with distant children. I met a retired fireball player there who gave me a bit of advice. "Always qualify the speed of your runner," he told me. "If you can gauge the safe distance your little monster can be in front of you that still allows you to keep him out of immediate danger, you should do it. If you think you have to be right on their tail every second, you’ll have a heart attack within a year." I always remembered that advice. I also remember his awesome hair.

Currently the Boo-Monster was in first gear "running to something". He was a couple rods ahead of me, but we four adult monsters were walking briskly enough. The Boo-Monster’s gait would be best described as shambly. His second gear was "chasing mode" and that was quite a bit faster and invariably initiated by some pesky pluckables. That required me to run. I am not a big fan of running.

"You know," Selana said merrily to me, "I do remember a certain little monster getting to a mud-pond before you could stop him. Maybe you don’t know as much as you think."

"Mud isn’t dangerous. It’s just…muddy," I said.

"Eloquent," laughed Rainbow.

"I get it from my son." I said. The Boo-Monster reached the wood chips surrounding the playground equipment and came to a sudden halt. Would he choose swing or slide first? He put his finger up to his eye and considered. By the time he had made decision to swing his adult companions were on the woodchips too. As always, he sat on the swing and decided he was facing the wrong way, got off the swing walked around to the other side and sat on the same swing but facing the other direction. "We’ve been to this park fifty times," I said to Rainbow. "He’s done the swing switch every one of those times." I got behind the Boo-Monster and gave him a push on the swing.

"Rituals can seem strange to those who do not practice them," said Rainbow with a grin.

Selana walked up to me, got up on her tiptoes and kissed me on the cheek. "Going for a run," she said. There was a track that surrounded the playground. "Shout if you need me." Then she was off. I liked watching her run.

After about five swings, Boo-Monster dug the tips of his stomping boots into the ground, came to a stop, and then indicated that he wanted to start over. "This is another ritual of his." I gave the Boo-Monster another five pushes, and again he stopped the process only to gesture me to start it again.

"Has he learned to pump his legs to keep the swing going?" Sister Gemini asked.

"No," I answered. "I tried teaching him but after he kicked me in the face ten times I realized that he either didn’t want to learn or that he liked kicking me in the face."

"I hope to have children one day," Rainbow said.

"It’s that kicked in the face story," I said. "Gets ‘em every time." I continued with the five and out swing sets my trainer was putting me through.

She laughed. "The Oracles of Wickwar have always known when a new life would enter our fold, but we can’t see past the fulfillment of the Prophecy of the Intolerance, which will soon be upon us."

"Well," I said, giving the Boo-Monster another push on the swing. "I guess we’d better make this whole prophecy thing work to our advantage then."

Rainbow looked at me for a moment and asked "Father, are you scared?" Uh-oh, she used my real first name.

"What happened to Daddy-O?" I asked.

Boo-Monster stopped the swing and yanked my arm. Time to start over again, Practice makes perfect I suppose. It’s probably better when you know what you’re practicing, but one does what one can.

"I’m trying to be serious," she said.

I sighed. "I’m very scared, kid. I just can’t let my personal trainer here know that."

"Can he tell when you’re scared?"

"I’m not sure, but I think so, and if I think so it’s best I try to hide it."

I looked off into the distance and saw another youngster motoring towards the playground with his mother lagging behind.

"This is always interesting," I said to Rainbow, nodding in the direction of the oncoming family.

"Do you know them?" she asked.

"Not yet."

Selana had caught up to her fellow mommy monster and was giving her the rundown on Boo and the Distance. The mommy monster was nodding. That’s the way it always works. I get to explain the Distance to the kids, even if most of them are smarter than I am.

The youngster running our way was very furry and forest green, wearing green shorts and brown stompers. I’ll bet he was a champion at hide and seek.

The Boo Monster had given up on teaching me the proper swinging technique and hopped down. He sat down and started playing with the woodchips, humming loudly, seemingly oblivious to the little monster that had stopped right in front him.

"Hi," said the little monster "my name is Charlie. What’s your name?"

"His name is Boo-Monster," I answered. "He doesn’t talk."

"Can he talk?" Charlie asked.

"Not as far as I know."

"Will he play with me?"

"I don’t know; let’s see if he’ll play on the slides." I picked the Boo-Monster up off the ground and pointed to the slide. "Hey buddy, slide?" He decided the slide was a good idea and made a bee-line for the spot on the playground with two slides. Charlie smiled and ran after him.

"Prepare for another eccentric Boo-Monster ritual," I said to Rainbow. The Boo-Monster always felt that the best way to get to the top of the slide was to climb from the bottom of the slide up. I have had minimal success getting him to use the ladder to slide down, but he always decided he’d rather walk up the slide itself. I stood right behind him so he wouldn’t fall. Charlie was using the other slide as it was intended to be used, but after a couple of turns decided he could help the Boo-Monster out.

"Why is he doing that?" Charlie asked me.

"He’s a thrill-seeker?" I offered. Charlie looked unconvinced. I sighed. Outsmarted by a kid yet again. "The Boo-Monster has a condition called the Distance. His brain work a little differently than most other monsters."

"I’ll teach him how to climb up the slide the way he likes it," said Charlie. "Boo-Monster look!" he shouted and carefully pulled himself up the other slide on his belly holding onto the sides of the slide and pulling himself up hand over hand. "If you try to walk up it you’ll fall."

The Boo-Monster ignored Charlie, which made me a little sad. It’s always good to meet a youngster who wants to understand the Boo-Monster, but Boo frequently had a very a narrow focus. He was a rebel. Charlie remained undeterred and once again tried showing Boo-Monster the proper way to improperly use a slide.

Boo decided he was done with the slide and found a pile of dry leaves in the corner of the playground and plopped down in them. He crumbled them in his hand and blew on them and watched them flutter.

"Looks like he’s impersonating you with the glitter," I said to Rainbow.

Rainbow looked at me for a few moments. "Probably not," she said finally "but it’s an adorable thought."

"I pretend he’s mimicking me all the time," I said. "Gives me the illusion that I’m a good parent."

Charlie walked over and stood next to Rainbow and me while we both watched the Boo-Monster. A shadow flew over us and we looked up. It was Sister Gemini. She gracefully landed behind the Boo-Monster as he tried to stick a handful of leaves in his mouth.

"Brother F," she asked "is he supposed to be eating leaves?"

I called over to Selana who was still talking to Charlie’s mommy. "A little help, sweetie!" She jogged over, got down on one knee and attempted to get the Boo-Monster to cease his leaf eating.

Selana looked up at Sister Gemini. "Boo-Monster will refuse to eat all sorts of real food, but he’ll eat leaves, paper, and grass without hesitation."

Sister Gemini laughed. "It takes all kinds, honey."

"Apparently," Selana answered. Boo had abandoned the leaves as food tactic and went back to tossing them up in the air laughing.

Charlie, Rainbow and I walked over to the leaf pile and Charlie pulled on my arm.

"Is his brain broken?" Charlie whispered to me. The group of adults fell silent. The Boo-Monster continued his maniacal chuckling.

"Not broken," I said. "Just different."

"Could they put a new brain in him to make him normal?"

"Well," I said, "I don’t know if they could or not, but if they put a new brain in him he wouldn’t be my son anymore, and I’d miss my son."

Charlie’s eyes grew very wide. "Wow," he said.

"I know," I said patting Charlie’s furry little shoulder. He smiled and looked up at me.

"I think you’re a really good, Daddy," he said.

I hope Charlie didn’t notice my eyes well up a little bit at such a nice compliment.

Library Day!

Let me tell you, these children are brilliant when it comes to distract and destroy. Masters of the craft. Mhmm. watch...

It all started early. I got Alex up and ready for school, sent him off a happy little boy. Then, after taking a few minutes to myself to have a cup of coffee with you all, I went to get ready to go. I'm getting ready and tell Walter to please tell Goofy and the Little Dementor to find their shoes. The decide they are not going to story time because they don't want to. I resort to bribery. Do you know what convinced these little spawns to go to story time? The promise that they could check out books afterward. Serious. What sense does that make? You don't want to go to a fun activity, listen to books, sing songs and spend time with other kids but you will do so *IF* I let you check out books? Ok, then.

We get into the car (which was a big goings on in itself) and my phone rings. My brother wants to know what we're doing. We're leaving for the library... Oh, because the Pretty Pretty Princess wanted to come get the L.D. now. I told him yesterday and the day before about story time!!! I don't care that other people want to see him too, sure, come on, whatever but it's 30 minutes! One day a week! So, she'll wait until after story time. cool.

We get there and all is well, there's a new Mom there with her 3 kids. and a friendship is made. Story time is actually pretty great. I'm picking up on the fact that how the other parents act sets the tone for story time. I made sure to sit in the front row by "my" kids and the new mom sat beside us with hers. Later on a 3rd mom joined us. There were plenty of other parents I couldn't see so I didn't know what was going on with them but the 3 of us were relaxed. We encouraged the kids to listen but not obsessively so. It was quite enjoyable. One of Mom #3's kids got kinda upset at one point so the Goofy child entertained him by pretending to hit himself. and I let him. He was quiet about it so... you know? Mom #2 had a child that seemed to not want to sit still. The Goofy one played with him. and I let him. He wasn't being distracting... I'm not sure how this is going to work in teaching him the appropriate way to participate in circle time in Kindergarten but what can you do? He's doing what he can to help the people around him. Which one is the biggest lesson I want him to learn in life?

The Little Dementor was impressive. he did wonderfully. The theme of the day was Father's Day. The L.D. has been blessed with an amazing father and every book she read, I could see his Dad in the story. He surprised me at how well he sat still, how quiet he was. When Story Time was over, the kids were invited to pick out stickers and a tie-bookmark to cut out and color for Dad. They did a good job choosing only one and Goofy helped the L.D. pick his perfect sticker. Walter even said he enjoyed it because he made a new friend in an older woman who sat beside him on the complete opposite side of the room from where I was sitting with the little ones.

That all fell apart once it was time to get books. It went from nice and cooperative to distract and attack. We started in the children's section. I had a list of 2 books per kid with the title of the books and the authors. All I needed to do was go to the shelves, grab the books and go. HA! The first one I went to there was a Mom who had a small child in a stroller, she stepped away to grab a few books. It wasn't 10 seconds before the toddler was imitating my "shhhh!!!!" (so cute). I grab that one and move on. alone. with no kids. Dangit! Where'd the go? Here they each come with a book. You guys can't be grabbing books off the shelves! They go in a certain order! But they wanted these books. they were cool books. and they were going to read them. Ok, then.

I go for Alex's books and the one I know the L.D. will love. Click Clack Quackity Quack- which turned out to be absolutely nothing like Click Clack Moo Cows That Type. which the library doesn't seem to have a paper copy of. I get Alex's books and get up to get my kids and move on. I find Goofy but no L.D. anywhere. Now I'm regretting the "shhh!!!" because I can't even hear where he is. Some slight panic. a minorly frantic search and he's with Walter over by where I got the first book. whew.

I go to get my books, I already know what I'm getting so it won't take long. Except... I let my attention be caught by the best seller display. Only for a minute. I just wanted a quick gander at what was available. Goofy decided that was enough of the shoes and decided to take them off. and his socks. in the middle of the floor. Boy! Get your shoes back on now! we move on to my list. I grab 2 random Nora Roberts books instead of taking the extra 30 seconds to search the titles. While I was doing that, the Goofy one found the teen section. With bean bag chairs. and small pillows. can you say... crash pad? running flips, pillow fights... I grab the kids and dash to the checkout, which is luckily a self checkout so we could hurry up and get out.

The Pretty Pretty Princess met us in the parking lot to get the L.D. and since the L.D. declared himself to be going to the zoo, Goofy was ticked. If you aren't invited, you aren't invited. I can't do anything about that. THEN, to top off the Mother of the Year award winning trip, Goofy stuck his hand out as I tried to shut the door. Luckily, I just barely caught the door but -reflex- smacked his hand out of the way. :/ We come home to wait for the Queen, with Goofy crying the whole way because he wanted to go to the zoo.

Get the Queen, which turned into another Pinky and the Brain episode. See what she's doing? all. day. Whatever Uncle Alex is doing, she has to do it too. Wherever he goes, she's right behind him. He surprises me with how considerate he is of her. She's the first baby he's ever watched where he stepped with. She's the first one he's easy with. She's the first one he seems to understand is a friend, not a doll. and she gives him the giggles :)

As for the Pinky and the Brain aspect, they work together to make me crazy. He does something, I go to avoid catastrophe, she's gone. I go look for her, he's into something else. back and forth they go.

While I was watching the 2 of them, the Goofy child disappeared. He was found in my bed, sound asleep with books scattered all around him.

When my brother got home, the first thing the L.D. did was show him the books he checked out and sat with my brother to read them.

At bed time when I started reading my book, Goofy climbed in my bed. "What are you reading?" Nora Roberts. "Oh." Then he goes on to tell me the wonderful stories he read. about the puppy and the Bad Kitty and how the puppy made the Kitty's tail puff up like Gilbert's does when he's scared. and he wants to know why the Kitty is Bad. I hadn't had a chance to read the books to him so I didn't have an answer. I invited him to go get his books to show his Daddy. He said "Daddy, I will show you in the morning." Then he turned over and went to sleep. I can only assume he dreamed about the fantastic pictures he saw in the books and the stories he imagined went with them.

Wednesday, June 13, 2012

Give it to me straight. Autism.

If there's one thing I want in this world, it's the straight facts. Beating around the bush, sugar coating things, it doesn't help. Just come right out and say it. Once it's said, I can know what to do. So, here it is, the straight fact- There is no *cure* for Autism. None.

There are treatments to manage behaviors but the autism will always be there. It will not go away. There is no magic pill, there is no quick fix. There is no one thing that will make your life easier or turn your precious child into a typical child. There are treatments to help them with just about everything but treatments take work. There are things you need to do.

You need to grow a spine, for one. I know that sounds harsh, but we're doing straight facts and this is one lesson I learned. Timid, for me, was an understatement but I learned that if I did not stand up for or to my boys, no one else would. There are things you need to fight for and things you need to do for your kid. Your kid needs you to be strong. This is not an easy life and it never will be. To survive and thrive, you can't do without a spine.

You need a big heart to go with that spine. and a pair of rose colored glasses never hurt anyone.

You need to know without a doubt that can't never could do anything. Your kid can learn but it's going to take work. It's going to take determination. perseverance. understanding. faith. love. repetition. unending patience. You cannot give up. You cannot give in. as soon as you do, you will lose the battle. Your kid will pay the price. You are the one who's going to have to do the work. While you are working hard, from "good morning" to "good night", your kid will be playing games, getting pleasant massages, and heavenly feeling sensory input from all kinds of fun toys and comforting clothing items. To make it the other way around is not fair and not right. Treatment cannot be punishment. Treatment cannot be work. Work does not motivate them to do. Decide what goals you want to work on, find out what goes into it and what you can do at home to teach them. Then do it. Ask for advice, ask others how they did it, then try it yourself. Keep trying until you find what works. Encourage them, enable them. but don't force. When you force, it becomes pressure. anxiety. fear of failure.

Your kid is not stupid, no matter how low functioning. It's up to you to find a way for them to learn. to lead them and allow them tofollow instead of dragging them along or pushing them ahead. It's on you to figure out triggers and solutions. No one else can do the work for you. You need to learn from the therapists, from your own research because the little bit of therapy they get isn't going to make that big of a difference. You need to implement the same at home. Consistently. The responsibility is not on the child. The responsibility is not on the schools, not on the doctors, not on the therapists, it's on you. They are your resources but you have to do the work. Learn from them. Ask questions.

Find a way. If you can't find a way, make one. You can't lay around throwing yourself a pity party, feeling sorry for yourself because life is so bad, Autism is so hard. You can't do this and you can't do that because of Autism. No. That is not an acceptable answer. You can. it won't be easy, but it can be done. Get up and do something about it. You don't know what to do? Then ask for help. Then, take it. Don't start listing all the many ways or reasons it won't work. You aren't going to succeed until you try.

If one thing doesn't work, move on to something else, but do. not. stop.

Don't think about yesterday, Don't think about tomorrow. Yesterday is gone and tomorrow will worry about itself. Focus on today.

Understand that you can't do it alone. You need support. You need a sounding board. You need resources. Find them. If you're reading this, that's a good start. Ask questions on the page. Give answers. If you don't like my page, I can direct you to hundreds more. Share success stories, share the stories that hurt. Talk to us. Listen to us. It will let you know that you are not in this alone. We are right there with you.

Grow a thick skin. While you're making a way where there was no way, you are probably going to run across a few snakes. Make sure you are protected, make sure you have a plan, make sure you have support because it will happen. They are mean, vicious, slithery little creatures but mostly, if you just walk away without provoking them, they will go bother someone else.

The point is, this Autism is not going away. It's not just a bad dream and one day you will wake up to your perfectly normal child. You can't snap your fingers and *fix* your kid. Miracles Are Made. "Miracles are Made out of sweat and hard work. When you approach them with the need for time-lapse photography, you make the miracle into a lie." "Miracles happen when you make the impossible possible and are, usually, the result of good old fashioned hard work."

Tuesday, June 12, 2012

What did you just say!?

This post is about Autism and Oughtisms and Alex's summer school teacher. Need to get that out there before my wandering mind gets the best of me again. I am having a lot of trouble focusing, thinking straight and staying on topic. Not to mention actual parenting. Poor kids are telling me what I'm supposed to be doing :) it has me focusing more firmly on the details (read: *obsessively*) in a desperate attempt to not miss the big picture. I've been having trouble sleeping. Before this blog, I was always all- stress related? what are you talking about? I don't have any stress, what do I have to be stressed about? How can I be stressed when I have no clue what happened 10 minutes ago, much less yesterday or last week? I'm not stressed, I just can't sleep. But looking back over recent posts, I can totally see it. It's been a roller coaster of a week. or so.

So, anyway, I read a post by Autism and Oughtisms. I don't know why I read it, what caught my attention, because it's close to the only post I've been able to read in days. The title of the post...
and then guess what... IT WAS!!! Except, at the time, neither one of us knew it. She started off with a story explaining her reasoning. The story being about interactions between her and her child's teacher. She explains how her expectation of a response from the teacher colored her perception of the actual response and changed the whole tone of the e-mail she received making it ... upsetting. You'll need to go read her post to understand a little better and you won't regret it, she's an awesome writer.

Done? Ok, so, I am beyond thankful I read that when I did. That same day, Alex brought home a permission slip for Water Day. Yeah, water. But not autism friendly, water table type water. we're talking sprinklers, water guns, water balloons. splashing, spraying, squirting. cold water droplets that are very sensory offensive for some, Alex being one of the some. I'm not going to not sign the permission slip but I can't sign the permission slip without sending a warning and a request for modification. DO NOT spray my boy. He will freak. He will run. (and I mean run.) Of course, I phrased it a bit differently, explaining his sensory issues and such. and I got an e-mail back...

That sounds good. We will be very careful with him and the others so they enjoy water day and not get upset. I will print this email out and make sure *New Guy* reads it and will be aware of the restrictions. I am so happy you let Alex continue with summer school. We are blessed to have him and my other students. I was missing these kids this past weekend. I have been teaching for 22 years and still amazed on how our children make our lives so happy. Please free feel to contact me at anytime. Thanks!!"

I sat there and stared at that e-mail. I re-read it. and re-read it. still hearing *bullshit* and *overcompensation* and *RED FLAG!!!* so, I read it out loud, which had Thing2 rolling and my brother shaking his head because the man knows me and my hotheaded reactions when it comes to anything Alex, while Walter just stared at me in open mouthed shock. and I thought about what to say back that would not be mean or sarcastic. I thought about how to respond in a way that would not convey what I was thinking. Then I heard Autism and Oughtisms' words... "Instead I remind myself that I was expecting a defensive reply from her, and to just take a step back. Read it again, with a clearer mind, see if my expectations have coloured what I’ve read." and "This time I read it as a calming response from a head teacher to a concerned parent. A reassuring reply to show she hears my concerns..." So I had Big Daddy read it to himself, not having heard me read it. "Yeah? so? it sounds fine. she sounds nice." nice? seriously? Then it's time to take a step back and hear what she's really saying.

Well, would you look at that? She's reassuring me. She's letting me know my concerns will be addressed. She's telling me that she cares about our kids, too. She's telling me that she understands my need for parent-teacher communication and that she's available. She sounds nice. She's giving me what I ask for- friendliness, straight forward honesty, real personal communication- not just the superficial reassurances of someone dishing out the minimum expected, not the extremely impersonal, completely vague communication of a teacher who just sees another IEP that must be followed and an overly annoying parent demanding attention, also not the blatantly overstated adoration of a person hiding their true feelings. What happened last week is coloring what I expected in a response. I'm searching the details, looking for warning signs, trying to see her personality in the details to see if she's trustworthy, honest, reliable and in obsessively searching the details, I totally missed the big picture. If this e-mail had come from his last teacher, I wouldn't have thought twice about it. I would have taken her words at face value and been overjoyed at the response. It's time to let a new person in my "circle". It's time to step back and let go of the preconceived notions.

and now, I wonder how much of the school communication that has upset me this year (the infamous "take tonight and calm down" and "these things happen.") was upsetting because it was colored by my own expectations. How many of the things they have said were meant as comforting or understanding but taken as an attack or dismissal because it's what I expected to hear? This is not a lesson I will soon forget and I have to thank Autism and Oughtisms for that lesson.

Monday, June 11, 2012

Paper Clouds Apparel

I am pleased to present a guest post by the awesome and magnificent Paper Clouds Apparel, who has some exciting news to share! Enjoy! and I will add a note at the end!

Hello friends of Homestyle Mama, My name is Robert Thornton and Mac is allowing me a guest blog spot to tell you about what I am doing. I started a fund raising organization called Paper Clouds Apparel. Paper Clouds Apparel takes artwork created by special needs individuals and transfers the art to Earth friendly, super soft, bamboo shirts. We then sell those shirts and 50% of the profit is then donated back to the special needs school or organization the art came from. We have been raising funding for VALLEYLIFE, the oldest habilitation center in Phoenix, AZ. They currently help over 450 special needs individuals over the valley. But my goal has always been to raise funding for special needs schools/organizations in all 50 states. But to do so I need YOUR HELP! I am just one man doing this all by myself and his next step will require some funding. So Paper Clouds Apparel just went live on the crowdfunding site Indiegogo. We will need all of your help in any way possible. If you like our shirts and want to fund us by purchasing one, awesome ! If you want to help by spreading the word on Facebook, Twitter, or by your blog, amazing ! We just need help raising the money and spreading the word. I believe with all my heart that Paper Clouds Apparel can change the lives of so many special needs individuals if just given a chance. So please if you can, help us in any way you know. Here is a link to our add on indiegogo Thank You!!!!

***My note***
Since this is a program I am very interested in seeing succeed, I decided to do something for my people who donate to the cause. If you donate $5 or more on their Indiegogo site, then post on my wall, send me a message or send me an e-mail that you did so, I will put your name (the name you tell me) on a PCA cloud and post it on my page. like so...

Or, if you'd rather, you can donate your children's artwork independently by sending it to:
Paper Clouds Apparel
3434 N 11th st suite #9
Phoenix, AZ 85014
Just include a note specifying which school/organization you would like for the funding to go to, as well as their address and phone number. 50% of proceeds will go to the place of your choice. If you donate art, take a picture of your kiddo's brilliant work and post it to my wall, I will post the picture with your child's name. I am donating Alex's masterpieces for his school.

Alexander the Whole

Why does it seem like every time I talk about Alex's other parents, I'm complaining about being offended? I could be happy that they showed up for a party that wasn't for their own kid, I could be happy that Daddy cut his nails, I could be happy that they brought snacks and candy to rot out all of the kids' teeth, not just Alex's, I could be happy that they include Alex's brothers in every single thing they do for Alex, I could be happy that Daddy spent time with his son or that my boys got to see sister, I could be happy that they brought toys for both Alex and Goofy but instead, I'm stuck on a comment. or 2. or 3.

Right now, I can't even tell you what the conversation was about. I don't remember what I was telling them other than... oh. food. They brought snacks for Alex. Mommy was telling me that she wasn't sure if I needed them for school because I never told her if I was sending him back. I told her I did send him back and told them the snacks would be appreciated and the story about Alex being hungry at school. We were laughing about the fact that Alex is a bottomless pit when Daddy said "It doesn't matter if his mind's not there, the hormones kick in. He's a growing boy." I can't express the words that were running through my brain at that second and still keep this *sort of* PG13, and I'm sure you all have the same words going right now so I don't need to elaborate. So, I shut my mouth, held my breath, counted to 5 and looked at Mommy. Mommy had the same look on her face that I know I had to have on mine so I know she knew. I took comfort in the fact that Mommy, having her own *child with a developmental delay*, understands and just let it go. kind of. at least, out loud. But here? With you? I need to talk. I need someone to hear. To really hear.

He is not mindless. He is not an empty shell that should have been a normal child. He is not defective. He is not half of a person. He is no less than Alex.

He lives.

Alex has a beautiful mind. Even though he cannot speak with words, you can see the intelligence in his eyes. You can see the understanding. He has other ways of communicating. He love to go places, he loves to do things. He likes the zoo, he likes the park, he likes the grocery store. He likes to ride in the car and gaze out the window. He likes to step into the river and feel the water swirl around his ankles, he likes to watch the water move. He likes to fingerpaint. He likes to watch his shows on TV. He loves dogs, he likes horses, he likes the way an animal's fur feels on his skin. He likes to explore and examine everything in his world.

He laughs.

at everything. When Dad cradles him and sings rock-a-bye baby and it gets almost to the point he knows Dad is going to drop him and catch him, he gets the giggles every time. When Dad starts with the tickle monster, there is no sweeter sound. When Mom sings "if you're happy and you know it" and it gets to the hesitation before "clap your hands" he gets so excited. When we are watching Ooga and Mom gets all uptight never knowing if Baby Bear will be able to finish the alphabet then jumps and claps and hoots and hollars when he finally gets all the way through... watching it daily is totally worth it.

He loves.

He loves his Mom, He loves his Dad, He loves his Mommy and his Daddy, he loves his brothers, sisters, his niece, his nephew, his aunts, his uncle, his cousins and his grandparents. He loves his school and he loves his friends. All of his relationships may not be typical but they are his relationships.

He is not soulless, he is not incomplete.

He is fearfully and wonderfully made. He is perfect. He is whole. He just happens to be a person with autism.

Autism is not a death sentence. It's a lifelong disorder. Full of life. full of love. full of happiness. Sure, there are some bad days, some sad days, scared days, worry days, some how in the heck am I going to survive this days. Not every day is wonderful, not every day is perfect, some days downright suck, but isn't that part of life? Part of living? Doesn't that testify to the fact that he is?

Sunday, June 10, 2012

My life

Realy i dont know about autism i barly even know what it is. All i know is it is a mental dissorder and a speachless dissorder. In 2002  i had my first brother(: his name was alex he was so freaking cute a lil chubby but that what made him cute. In 2004 he was diagenosed with autism :\   my mom was shoked. in 2006 we had a 2nd brother his name was  " goofy " i cant say his real name because my mom said " no ". In 2007 my grandpa died of canser and my mom and my step-dad " Big daddy " i dont know what my mom was thinking about when she made these names :D . In 2011 we were blessed with my niece  " the queen " i love her soo much <3 . That is our life i dont care what people think of us we only care what we think of us because we are a family and we will stay like that !!!!!!!!!!!!!!!!!!!!!!!!!! .

~ walter

Heart Attack of the Year.

Maybe that should be 2 years... but that doesn't have quite the same ring to it, does it?

Well, anyway, these past couple of days or so, I have been giving Alex a little more freedom. Not stupidly, but small amounts. At the playground, I let him out of arm's reach because he hasn't been bolting but still close enough I can get to him pretty quickly just in case he decides to run.
The other place he's being given more freedom is at home. He's managing stairs decently so he's allowed to go downstairs to play when he wants and I've been letting him in the living room more because he needs space. he needs a home he can access. safely. The outside doors are still locked, there is still no way for him to get out front. when the doors are used properly. He's hanging in the livingroom today, watching his shows, playing... Alex things. and even though the door leading to the garage is unlocked, he's still safe because the only place he can go is the back yard where the other kids and some adults are because the front garage door is closed.

I saw Alex sitting there, watching TV, playing with his toys so I went to load the dishwasher. He started bouncing around the livingroom, bouncing on the couch (shhh) and being Alex.
Then the door to the garage opens and the L.D. comes running in leaving the door open behind him. Through the door, I see blinding daylight. For the 3rd time, Thing1 left the front garage door open and Alex is suddenly not bouncing around the livingroom. I take off running and don't see Alex anywhere. I remember Bacon and Juice Boxes saying they are usually hiding and we don't see them in our panic so I look around the livingroom again.

He was under the table, digging though the toys. Thank God. I very angrily shut the doors and go on.
Then, frequently glancing at my baby to make sure he's where he should be while I go about my work, I see a strip of too bright light under the door, go investigate and this is what I find...

#4. and then #5. and #6.
See that street so close to our door? It's busy.

I'm not happy. He doesn't seem to see the literal life and death situation here. I know, eventually, when his own daughter has to be protected from running into the street, he'll understand. Someday, when it affects him, he will get it. The scarier milestones his daughter hits are good days for me. The terrifying lessons he (and his ex-girl) learns, with each one I breathe a sigh of relief because finally, they get it. Gates are locked now, coins are not left lay. But the doors... all he sees is the inconvenience for him. The extra steps he has to take. He has never been here during a fear filled, panic encumbered search for a missing child. The missing child. The most recent search, and worst ever being 2 years ago. He doesn't know first hand what it's like.

Some day he will. Eventually. But I can't afford to wait for eventually or some day. Alex can't wait.

Saturday, June 9, 2012

Peace and Quiet.

Today has been the quiet day I was hoping for. Big Daddy's ex and daughter came over for a few minutes this morning to drop off Thing2 and look at Thing1's new car while the Grandson played with the Goofy child. It was a little wild for a little bit but nowhere near chaotic. Big Daddy's daughter is very interested in autism, looking to work with kids like Alex and trying to learn everything she can on autism. *light bulb* be back.

Ok, anyway, other than them, I haven't heard from a single outside person today. No phone ringing, no doorbell ringing. nothing. Big Daddy went to work, Thing1 went one way, Thing2 went another way. The boys are even quiet. Walter's on the computer, Goofy's watching TV and Alex is going back and forth between the TV in the living room and the cereal setting beside me. and, of course, walking over to see what I'm doing with *his* laptop then reaching over to lick it to make sure I know it belongs to him. He's just letting me borrow it.

I heard a rumor that the Queen's birthday party is supposed to be tonight which means there will be people. eventually. and I will have to find 5 minutes to shower and change my clothes. and I really should mop and vacuum before they get here. but it's so quiet. so slow. I just want to enjoy it for now.

Also, eventually... today was the Little Dementor's first T-ball game. I haven't heard anything on it yet but my brother is supposed to be bringing him back with him and I can ask him how he liked it. He'll be here for a week. as usual.

I'm waiting to hear back on what days I have the Queen this week. I'm pretty sure I'll have her Wednesday. If I remember correctly, that's the only day that absolutely no one else is available. I'm a little worried about story time but, if I can do it with Goofy, Alex and the Queen together... Goofy, the L.D. and the Queen should be simple... *hope*. Walter will be with me. He's going to want a new book, I'm sure.

and Alex just found my baking utensil drawer :) Good thing I haven't run the dishwasher yet.
I love that boy. He's so sweet. so innocent. so curious. He's calmed down a lot here lately and I'm not sure what the cause is. Taking him off of milk? Getting older? Understanding/meeting his sensory needs better? changing schools? When did he go from a destructive ball of energy to a calm, collected little boy? over time? overnight?

...and he found the pans. I think the Queen is teaching him to get into things he never thought to get into before. These are 2 of her favorite places to find toys. I might have to move the knives. Right now, they are in a drawer he can reach and on the counter because I haven't had a problem with him trying to touch them or get into my drawers. Last night he grabbed a pair of scissors out of the knife holder. Luckily, I was standing right beside him. Today, the drawers and cabinets. So, yeah, I just moved the knives. better safe than sorry.

He went to lay down so I'm going to shower. :)