Monday, September 30, 2013

So Pardon Me While I Burst Into Flames (PG 13 Language Ahead)

I had to go to Pixie’s and Tiny Man’s IEP last Friday. For the most part, it went really well. They told me they are EXTREMELY proud on how far they’ve come and how hard they’re working. That makes me happy…especially with Tiny Man because he can be VERY difficult if he doesn’t want to do something…

My kids’ case worker and I see eye to eye. It’s refreshing because I’ve heard some serious horror stories. But nope, I’m blessed… she and I are COOL with each other. She had to pull me aside, before the meeting and tell me that the Child Psychologist (the one I don’t get along with) was going to try and talk me into letting Pixie’s personal teacher go because she had been doing so well.

“She just wants to talk to you about it and get your input…”

Ah…. You are the buffer. I get it. Soften me up. My response “She can talk all she likes…not happening.” She smirked. “You’re one of my favorite parents, “MommaDe”.

And the meeting went underway, sorta. They try and get these meetings in before school starts so the teachers and therapists aren’t taking time away from the other kids. I get and respect that. My kids aren’t the only ones they help during the day and I’m not THAT selfish…

So, the Child Psychologist strolls in 15 minutes late. Mind you, I had to get the meeting started because we were waiting for her. No surprise there. She doesn’t like having to deal with me. Pro Tip: try and pull one over on me or my kids and you don’t want to deal with me, either.

So we’re going through all the teachers and therapists. I had to inwardly chuckle (and feel extremely grateful) that my kids have a staff to help them get through their day. It gets funnier when you realize my daughter’s full title nickname is “PRINCESS SugarPop Prettyfeet, Pixie of the Wild Frontier.” *Giggle* She has a staff… Anyway…

It came time for the Child Psychologist to speak up. The moment she entered the room, btw, and the energy just changed. Thanks to my youngest brother, “Uncle Xerbs”, he had me watch this show call “Lie To Me”. If you’ve ever watched that show, it basically shows you how to read people through their body language. Lemme tell you… it has staved off MANY an argument and has given me a heads up on who is feeding me a line of B.S. It’s just my little “Ace” up my sleeve.

And as soon as she walked in, my kid’s classroom teacher, sits back and starts to fold her arms. Defensive position. I had to hold back a grin. She doesn’t like her! Interesting…

“So, “MommaDe”, I wanted to go over something with you and get your input on a new idea we wanted to try. Since “Pixie” is doing SO well we thought we would take her personal teacher away from her and see how she does. It also frees up the teacher to go to another student. Your thoughts?”

I sat there for a few moments pretending I thought it over. “No.”

There was a pause. I’ve learned that the word “No” doesn’t really have to be explained, ESPECIALLY when it comes to my kids.

Ugh… she’s going to have me break out my inner pitt bull. I don’t WANT to break it out! It’s FRIDAY!! Really, lady? Ugh…

“My daughter is doing well BECAUSE of the teachers and the therapists she has on hand, this INCLUDES her personal one. She has worked VERY hard to get as far as she’s gotten and I WILL NOT take that hard work and toss it away simply because YOU want to save a few bucks. You get a fund from the state based off of how many Special Needs kids you have each year. Dip into the fund and hire a teacher because my child’s teacher isn’t going anywhere.”

You could feel the ripple of energy bounce off of me to her. Everyone else just sat back and watched the battle unfold. I’m a pretty easy going person until you mess with my kids. I was told by HFM, a long time ago, “You have to be your kid’s biggest advocate. If you don’t fight for them, no one else will.”

Yep… gonna break the PG rule here…

I think it’s a shitty thing to do to force this on a parent, btw. We have ENOUGH stress on us, and now we have to be their biggest advocate, too. I shouldn’t HAVE to fight that hard. They see my daughter. They see what her needs are. But noooOOOOooo… you have to go and poke Momma Bear and piss her off on a Friday. Way. To. Go. *Golf clap*

So along with the full laundry list of stuff a mother is to begin with (with just an NT kiddo), then add all the things a Special Needs parent is on top of that…and that’s my life x2 because Tiny Man is a Special Needs kiddo, too.

Bitch, I have about 6 years of sleep deprivation just needing a direction to be unleashed. Do. Not. Trifle with me. K? …… K.

“Oh, “MommaDe”, I didn’t want to get you angry, it was just an idea….”

“I’m not angry. I’m stating that her personal teacher isn’t going anywhere. I’m not signing off on anything that resembles that “idea”.

And that was that.

FTR…. I FRIGGIN HATE having to break out my Inner Pitt Bull. She is nasty. She is mean. She is SUUUUUPER protective of my kids. I don’t like being mean to people. I like laughing. I like being happy. I get ANGRY when those moments are taken from me. (FTW, I know that Pitt Bulls really aren't mean and nasty...but they are super protective and if you cross that line, the business end is no joke.)

*Snort* I almost have to ask “Are you new here?”

To answer it, no… no she’s not. She’s been around since Pixie started the preschool program when she turned 3. Blessed Fortune has decided I've fought with her enough and she is leaving the district this year. (Does a fist pump "YESSSS")

So yes, this was what I had to deal with on Friday. I only had to break out my “Bitch Be Good” Stick once. Not bad. It could have been a LOT worse.

Finding My Happy Place,

Thursday, September 26, 2013

On Those Who Judge

High Functioning Mommy here. I've been itching to write this entry for a while.

It's an unfortunate, but common occurrence for special needs parents to be unfairly judged by those who consider themselves our peers. In all actuality, they are not peers. We may be in the same age group, maybe from similar economic backgrounds, sub-cultures, groups of friends, whatever. But unless you are a parent--or at the very least, have taken years of college courses and have spent years working in education or have NO right to judge us.

Here is my experience, the background story. There will be another entry to follow this up; because unlike the antagonist of this blog entry, I want to make sure our readers have all the information before they pass judgement on the one who decided they were qualified enough to judge the parenting of my husband and I.

Between the ages of one and two, Destructo was a terrible, and I mean terrible, sleeper. At the time we were living with my parents and my younger brother. Six people in a one floor, three bedroom condo. The condo was also situated over a row of garages. My husband and I moved in when I was about five months pregnant with Destructo. Our plan had been to stay with them until we got on our didn't quite happen that way due economics and cost of living and available jobs where my parents lived.

My terrible sleeper. We could not get him on a schedule. Of course, it didn't help that everyone in the house was on a different schedule. My little brother left for work before the sun was up. My father left several hours later. My mom, with her myraid of health issues, was a night owl. My husband was working overnights at a grocery store. And then there was the automatic garage door opener that went off at 7:30 in the morning below our bedroom. And my mother's dog, while sweet, wasn't exactly a quiet dog either.

We even tried the "cry it out" method. Once. He screamed for two hours until he made himself sick. I'll never subject a child to that abuse again.

The only thing that was consistent about Destructo's sleep pattern is that he always went down at three in the morning. Then he'd crash for at least six hours. At this time (Spring and Summer of 2011), he was already involved in Early Intervention and receiving Special Instruction and Speech Therapy. So naturally, if we were having a rough night, I'd kvtech on Facebook about it, because more often or not I'd be playing Facebook games to keep myself awake while Destructo ran laps around my parents living room while Wow Wow Wubbzy played on Nick Junior after midnight.

On May 22, 2011, I posted in my livejournal about it. Here's an excerpt:
And as if I weren't dealing with enough, [Destructo] is slightly developmentally delayed. I'm pretty sure he's on the autistic spectrum, but on the ADD/ADHD/Asperger's Syndrome end of the spectrum. His gross motor skills are fine, he was walking at ten months old. But he does not use language, he does not listen, he does not respond to his name. Everything we thought was first words were just sounds.

We're already involved with Early Intervention, he sees a Special Ed lady twice a week and we're waiting on the speech therapist. He's already showing improvement in certain things. He was evaluated last week for autism, I'll have that report on Tuesday to bring to his doctor (I'd be surprised if he WASN'T on the spectrum).

[Destructo] is also seen by a geneticist (who I have bitched about previously) and more recently a pediatric orthaepedist since his left leg is severely bowed. I politely told the geneticist how I unhappy how things were handled with the Fragile X testing, so this time, the lady explained to me what they were looking for (he got more genetic testing a few weeks ago that I'm pretty sure involved an electron microscope) and why, and I thanked her. Just talk straight to me.

And yes, [Destructo] has already seen a neurologist. First doctor to say my son is normal. XD Seriously though, the neurologist said that he's normal as far as he can tell, doesn't mean he's not ADD/ADHD but I guess we may eventually follow up with him again.

The Early Invention ladies keep praising me for getting on top of things so early, but I am just doing what's best for [Destructo]. I don't want to happen to him what happened to my brother and I...struggling through school, not getting one-on-one attention, my ADD/ADHD/Asperger's is totally not diagnosed and even though my brother's WAS, he was totally screwed over by the school district and dropped out of school.

If I'm still in New York when he's school age, I'm home-schooling him. I can't afford the Montessori school ... (already looked into it) and if [Destructo] is anything like me he will need one-on-one attention to learn, he'll be a visual and not an audio learner, and he will have the attention span of a gnat.

The reason I will be able to be his teacher is because I will understand him, and I will able to keep MY attention, because like all Aspies, I have a narrow range of focus in one subject...and that is my son. :)

Around this time, I'd done some research (like most of us special needs mothers do). I read an article that stated that autistic people either didn't produce enough melatonin to go to sleep at a proper time, or if they did, they produced it at the wrong time. Well, that seemed accurate for Destructo.

This announcement prompted some conversation from the educators on my friends list. I listened to what they had to say and actually felt better about public school. In fact, homeschooling is completely out of my head--Destructo needs way more therapy than I'm even qualified to give.

A week later (May 29), I made this post in my livejournal:
Got the report back from the evaluator for the M-CHAT. He failed five out of six questions he wasn't supposed to fail. This isn't a solid diagnosis but rather we are to follow up with a developmental pediatrician. On the other hand--his normal doctors think he's just a normal 18 month old with a language delay. If he does get a positive autism diagnosis (and just to reiterate, [Destructo] would be on the mild end of the spectrum), we would be eligible for more services through Early Intervention.

On the bright side...[Destructo] is using more words since he started with the Special Instruction teacher. The speech therapist doesn't even start until next week. He is using something that sounds like "ball" for his big red ball, and "okay!" which I think he got from his special instruction teacher...she says it a lot. He is also using "ba ba" for bottle more often even though we don't use bottles anymore. :)

One of the concerns I brought up to the doctor is that [Destructo] is very resistant to trying new foods. He will gag, and if I try and force it and he still doesn't like it, he will make himself sick. Sometimes when I cut up fruit for him, and force a piece in his mouth, he chews and realizes he likes it. But I can't do that with broccoli. I tried giving him a little bit of broccoli twice a day for a week. He wouldn't touch it. Once in a while I can sneak in some potato bites with his chicken and he seemed to like when I cut them smaller last night.

He won't eat his purees anymore and pretty much lives on formula, chicken tenders, Gerber's lil' crunchies (the two flavors he can safely have), and buckwheat pancakes. So his doctor said to ask the speech therapist about oral texture food aversion. I did at our initial meeting, and I'll have to demonstrate it to her next week.

Sometimes I can't help but wonder if [Destructo] thinks that new foods will make him sick. I can't say that I blame him there. :(

I made the appointment for the developmental pediatrician at the beginning of June; they wouldn't be able to see Destructo until the latter half of August, but the appointment was made.

Halfway through June, I made a post on Facebook about a long night with Destructo. You can see it below. Purple is me. Red is a not nice person. Blue is Destructo Daddy. Green and orange are female friends of mine who are also mothers, and yellow is my mother.

And this is where I will leave off...for now. Because wait until you see what I woke up to the next morning.

Monday, September 23, 2013

15 Years and Counting

Today marks a special day for The Hubs and myself. Today is 15 years together. I had just gotten out of a crappy relationship and wanted to take it slow. I was friends enough with him that I didn't want him to be a rebound. I respected him enough to tell him that.

After a while, he finally looked at me and said "So... are we over the dating thing, yet, or what?"

My eloquent response? "Uh... ok, I guess so."

That was 15 years ago. I haven't looked back. I somehow knew that taking the relationship plunge with him was going to be on a permanent basis. Anyone that can handle my spaztastic dysfunctional life and still be attracted to me, was a keeper.

He's given me 110% in most cases. But that's the key to relationships. It's never 50/50. Some days you're giving more, some days less. He's been emotionally there for me, every time I've needed him. The secret to a lasting relationship? Make sure your emotional baggage matches. Everyone carries a bit with them. The person you build a lasting relationship with, the baggage has to match. If you come in with more or less than your partner, your relationship just becomes a long therapy session or a consistent rescue mission. And really? Who has time for that?

Now, he will give you the story on the first day he saw me. Me? (And I know it's terrible of me) I didn't notice him at all until my senior year in high school, and even then it was a brief conversation. We really didn't start to "hang out" until after graduation. (The events are fuzzy with me.)

We've traveled a bit of the world together, we've laughed more times than I can count, we've cried together...we created life together, our souls grew up together, and we are growing old together. It's been one amazingly crazy roller coaster, but I can't imagine anyone else sitting beside me, riding it with me. He may say that I'm the better half, but I have to disagree.

And if after 15 years, my imperfections and flaws haven't made him want to faceplant a brick wall... well then, I have something pretty special. Here's to many many more, baby. You will always have +1

Taking time out for mush,

Thursday, September 5, 2013

Awareness, a multiplatform word.

I'm sure, by now, many of you have read (or at least heard about) the tragic story of the Stapleton Family. (If not, the story is here:

Her wisdom and compassion were a light for many of us in the Autism community, so it's no surprise that many of us are deeply effected by this shocking story.

No judgements here. When you're pushed to the very edge of your emotional limits, your mind goes to unspeakable places. I'm not saying that I would have done the same, but I am saying I understand why her mind went there.

I worry all the time about my kids. Will Pixie and Monkey be able to live on their own? Be able to take care of themselves? Am I going to be taking care of them for the rest of their lives? These are the kinds of thoughts that keep me up at night. I try not to dwell on it because whatever will be, will be, and worrying about something you can't change does no one any bit of good. My kids need me "in the now" to help them. And that's where I *try* to stay.

It doesn't always work. I can't tell you how many times I've cried in my shower because, out of nowhere, the anxiety and stress hits you like a ton of bricks and you whisper "Can I really handle this?"

Doubt and defeat are powerful cancers on the soul. If gone untreated, it will eat away everything you've tried so hard to put up. It eats the best and strongest, eventually...

Awareness. Ask any Autistic parent and they will give you a list of what that means to them and why it's CRUCIAL for our community. It's growing a community together held by compassion and understanding. It's putting tough questions up to the doctors for an answer (that we many never get.) It's driving home the importance of having early intervention in every district so that the child can have the best possible start in life. It's a simple as leaning over to someone who's staring and saying "She/He can't communicate like you can. It's a learning disability."...and on the rare occurrence, (which is growing smaller much to my relief and fear) the light in their eyes sparkling that they finally understand why your child is flapping their hands in public.

There's another side that even us, as Autistic parents sometimes oversee... Awareness is also linked to the parents that have been fighting too long and need someone to lean on once in a while. We need to be aware of our own community members and the internal struggles we ALL face. Be that shoulder, that ear, let them vent. When someone asks "Hey, you ok?" and we turn, give that knowing smile and say "Sure.", knowing that's the wrong answer and knowing that we want to yell and scream and shout 100 different things (some not so nice) without judgement. We don't need to hear what we should be thankful for. We need someone that just "gets it"...and even if you don't, just being that quiet ear. (Hmm... can you tell I've been there before??)

One of the blogs I've read about this, sums it up perfectly. ( For a community that is divided (Anti vacc vs Vacc, meds vs homeopathy), we have to stop fighting. Stop and look around at someone who might be fighting just a little too long or just lost a battle. Different opinions are well and good, but when someone is put at these lengths (feeling there are no more options or alternatives), it's time to drop the ego and pride and reach out. Sometimes we are so used to fighting that we overlook WHO it is we're fighting, just so we can get the fight done and over with.

A house divided...

I am proud to be a part of such a wonderfully diverse and tight knit community. Don't feel like you have to shoulder it alone. If you feel your "light" going out, borrow someone elses for a while until you feel strong enough to relight your own. I may be new to this Autism World, but I'm decent at being leaned on. You have a community at your fingertips. Humans are social creatures and have relied on each other for thousands of years. Don't feel like you have to reinvent the wheel because you don't want to "burden someone else."

Prayers to the family, they're going to need them.

Carrying extra "torches",

Wednesday, September 4, 2013

"It's the most wonderful time....of the year!"

Ah, first day of school. Chaos ensues to its normal baseline around MommaDe’s Compound. There is one major change, though… Peanut has officially started. For the first time in almost 6 years, I am childless during the day.

It’s an odd feeling…

I did well, though. Held tough until I got home and talked to my mom (Nana). I was an emotional wreck all week, though. I had this giant knot in the pit of my stomach. Whether it was psychosomatic or something was tearing through this house, I’m not quite sure. Lil Monkey got sick a bit, too, as did Bokka which leads me to believe it might be a bit of both.

My glitch? I remember what Elementary School was like for me. Kids can be amazingly warm and loving creatures, or they can be heartless cruel individuals. It’s all in the rearing. They’re like sponges, sucking up things that you don’t think they’re picking up on. They. See. Everything. (Keep that in mind when you tell an off color joke around the corner, out of eyeshot of your kid. You may not think they understand or can hear you…they do. Children start to understand words in the womb.)

Not everyone raises their kid with love and understanding and my son has to be at the mercy of whatever animal raises a kid. This is where I get to see if everything I’ve started to instill into my kids, holds out.

Yep. I said it. Animal. Just because you tossed some of your DNA with someone elses doesn’t mean you SHOULD have. There really should be a test on parenting before you start having a kid. The last thing this poor world needs is another angry, emotionally abused, dysfunctional, ill-mannered self-entitled brat entering into it. Yeah. I went there. I SO went there.

I’m gonna let y’all in on a little secret. With the exception of a handful, I generally can’t be around other people’s kids. Why? …. Mostly because of 2 simple words that have been omitted from their vocabulary.

“Please” and “Thank you”.

Is it really so hard to reinforce manners? When I was raised, when we asked for something that we wanted, it was always with a please. And when we were given said item, it was a “thank you” at the end. Manners are the EASIEST thing to teach a child. All it takes is patience, consistency, and repetition. If you, as a parent, can’t provide those three things, don’t be a parent. I’m serious.

Go and sit in the mall and just close your eyes and listen to how children address their parents these days. It makes me inwardly cringe.

Buuuuuut, that’s a tad off subject. I’ll rant about manners another day.

I’m talking about bullies right now, and how they’re started at home. Now, don’t misunderstand me. I have two younger brothers and I understand there is a pecking order that has to happen. I’m not talking about sibling rivalry. I’m talking about a kid going out of his or her way to inflict mental or physical abuse on another living thing.

Yes… I was a victim of a bully. Several, in fact, (still have a scar on my back from one) so I know what my kids are up against. Pixie and Monkey are going to have a hard enough time being a kid on the spectrum. They don’t need someone tossing their weight around on them.

I almost feel sorry for Peanut. Being your sibling’s Champion (until they can take care of themselves) is a big task. I pray to the Great Mother every day to take care of my brood. It’s tough because I can’t be there.

Honestly, I don’t know how Nana did it with the three of us (my two brothers and myself) without being on some kind of prescription med or alcohol.

*Takes in a breath and lets it out slowly*

Oh well… The Hubs is off of work today and we haven’t had a day free to just us, in quite some time. I’m off to watch a day of good movies and relaxing.

Breathin’ easier,