Hackles raised...

Something’s just not right. I can’t put my finger on it. I can’t figure out what is off but something is just not right.

I get these feelings occasionally right before something bad happens. I don’t think I’m psychic. I don’t think I could even remotely tell you what I think might be about to happen. I just don’t feel quite “right”. It’s a dark cloud lingering on the peripheral of my vision, a specter haunting my thoughts. (And no, I’m not depressed. It isn’t like that.)

It’s a foreboding feeling, a sense of unease, that thing that makes the hair stand up on the back of your neck. It’s the thing in the woods on a windy, moonless night. The echo of your steps in a dark alley that might not be just your steps, the empty parking structure after everyone else has gone home, and the dream that wakens you with a silent scream caught in your throat as you tug at blankets trying to escape it’s grasp.

It will hurt you. It will bring you pain. It will make you cry.

I hate this feeling because it’s never wrong. I had it before my Papaw died, before my brother died, before every car accident I’ve ever been in, and before I lost my baby. It lingers, leaving its taint on everything until you can look back and see when it started. I’m in the beginning. I can’t look back. My hackles are raised because it’s there waiting and I know it.

Soon enough there will be a story. For now, there’s the waiting…

Plucking the strings...

One of you broke one of the strings on your new Newton's Cradle...it's replaceable.

One of you tied the strings on my tiny Newton's Cradle in knots...they're replaceable, too.

All three of you keep plucking at the strings to my heart. Those will never break.

"Make me a flower!" "Make me a flower first!" "(Garble...garble...point...) FLOWER!" Playdoh is made for moments like that.

"Draw me a zebra, Uncle Davy!" It was the funniest zebra I've ever seen but she loved it. :)

"I have a utiful hairscut!" Yes you do, baby, but you're "utiful" whether your hair is cut or not.

"I need more chocolate!" I'm pretty sure you ate your weight in chocolate but you were so cute running off with your hands full of peanut butter balls and chocolate covered pretzels that none of us had the heart to tell you to slow down. I'm just glad you never got sick off of all that sugar.

I pressed kisses to your cheeks on Christmas Eve and whispered about Santa and presents and surprises in the morning and I-love-you's then stood outside your doors and whispered to myself about how hard you tried to be good all year and you deserved so much more than I could offer.

We are coming to an understanding about each other. I'm learning about you and beginning to "get" you all three more every day. I'm so happy that you enjoyed your Christmas. I'm accepting that I'm not a perfect parent but I'm the perfect parent for you three and that's all that counts. We'll make a few mistakes along the way but my heart is always open to you.

This past weekend you filled my heart to overflowing with joy and happiness. You were yourselves and you were mostly surrounded by family that cares and wants to be there for you. For these things, I am grateful.

We had a great Christmas. I hope yours was great, too.

XO,

Forgotten

Dear Santa,

This time of year draws on me like a bucket from a well. I feel like pieces of me are pulled slowly out and then poured all over the place in a messy splash that soaks everyone within range.

I’m angry. I’m insanely pissed that my ex hasn’t seen my kids in 10 months. I knew that the time would eventually come that he would stop seeing the kids but I didn’t expect it this soon. I’m aggravated with my dad for not even acting like he remotely cares about me and my little family. The last time I stopped by to see him he acted like he couldn’t wait for us to leave. I guess I just need to accept the fact that he’s never really going to be the parent that I wish he would be. I had an idealized version of what a father/daughter relationship was supposed to be like but I think my dad is just too damaged for that.

I’m sad. I miss my brother. Tomorrow his birthday will be a month away, ten days after mine. I don’t have him to get a present for even though I almost always see something that I know he would have liked. I can’t have a wrapping paper ball fight with him and my baby brother on Christmas Day. I can’t laugh as he tries to steal everyone’s gifts or sticks a dozen bows to his head. I can’t pick on him when he comes running up and turns his arched back to me begging me to scratch it for him or steal his hat and run off with it as he cusses about everyone seeing his messed up hair. I can’t threaten his latest girlfriend with abuse and a secret burial if she does him wrong. I miss those days.

I’m happy. My kids have made so much progress! Noggin is actually telling me what he sees in books! Screech is trying to write his name…sorta. Grabby is turning into such a little smarty pants that I’m surprised almost daily by the things that she says or does. I’m seeing someone who treats me and my kids like the most precious beings on Earth. I’m actually attempting to turn my routine and my way of doing things into our way of doing things together (this is a big step for me because letting others into my routine is VERY hard for me to do).

I’m worried. I’m worried about my mom’s health. I’m worried about my little brother’s health and his relationship. I’m worried about the progress that I’m also not seeing in my boys. I’m still not having much luck with them recognizing colors, shapes, numbers, or alphabet letters. I’m worried about a few other things that I’m not ready to speak about on here yet. I’m having nightmares and I can’t decide if they’re stress-related or medication-related because I get them when I’m stressed but they’ve been especially vivid since starting the latest med.

I’m lonely. I don’t mean in the sense of not having anyone. I just keep getting the feeling of being alone whenever I’m around other people. I look around and wonder if any of them are Aspies or if they have the kind of issues that I have. I wonder if anyone besides me fights to look at people when they’re talking to them or absolutely hates to shake hands with strangers because they don’t know where their hands have been. I wonder if I can get over the need to control how everything in my world is done because I only feel right if I do things myself. When I’m walking, not really seeing anyone around me because I’m staring at the ground or looking at empty spaces to walk through, I’m not exactly looking around to see who’s also doing the same thing or who’s trying to avoid eye contact with a group.

I feel like I’m slacking lately. My PECS book for Noggin has been sitting at the end of my bed waiting to be worked on for weeks now. I have tons of presents to be wrapping but I just don’t feel like staying awake at night in order to get the wrapping done. I had plans for a big calendar with magnetic PECS symbols so my boys would know what was coming up and weekly/daily schedules and I haven’t managed to complete any of that. I wish I had a completely free weekend with a few people to come over and help me finish all this stuff and hang my damn pictures in the house. I just can’t get it done on my own. I need to teach my boys how to use Proloquo2Go on the iPad but I don’t get much time to sit down with them of the evenings after cooking dinner, eating, cleaning up, baths, pajamas, and meds. They already go to bed much later than other people’s kids and I know more sleep would help them so much.

I’m tired. I need a good day’s sleep and some solid time spent sitting down on my butt for an evening not doing anything. I also need to get rid of whatever this plague is that the kids have given me again. I’m grouchy and I feel like I’m losing my inspiration to write.

So, Santa, think you could drop a few elves at my house? If they can make that many toys, they should be great at laminating PECS symbols and designing calendars! I might have to get them a ladder for hanging the pics on the walls but that wouldn’t be an issue. Hook a Helping Hooker up!

XOXO,

Forgotten

No, not every kid acts like this...

Noggin sits on Santa’s lap. Santa asks him what he would like for Christmas and he answers in garbled words that only one or two are recognizable and no relation to the question. When the woman with the camera says, “Look over here, sweetie! *finger snaps* “Sweetie? Hun, can you look over here?” *more finger snaps*. I stop her by saying, “He won’t look directly at you. He’s autistic.” and she snapped a picture quickly before Santa sat him down on the ground.

Screech sits before me, one sock on and one sock in his hand. He’s screaming at me. “NO! NO!” I’m trying to figure out why he doesn’t want socks on. As he keeps screaming at me, he grabs his sock and tries to pull it higher up his leg. It hits me that he wants to wear long tube socks today instead of ankle socks. I rush down the hall to grab a new pair of socks as the wailing increases in volume because I left him sitting. I return with tube socks and he immediately calms down, like flicking a light switch.

I’m working on filling their dinner plates with food. I push my sleeves up my arm to my elbows so I can scoop food without getting it on my shirt. As I’m sitting his plate in front of him, Noggin grabs my arm and pulls my sleeve down and then fusses because I don’t immediately give him the other arm so he can pull my sleeve back down on it as well. He pulls his pants legs back down if I push them up to put his shoes on, too.

Screech gets angry if I skip a song on the iPod as I’m trying to find something for him to listen to in the car. He wants to try to sing them all and will yell at me and begin his “yodel cry” if I don’t find a song he knows quickly.

Noggin gets up in the morning and immediately comes to find me if he wakes before I make it to his room. He demands to put clothes on, which means he wants me to get his clothes and his shoes and come in the bathroom so he can pee and then immediately get dressed. If I do not have his clothes ready to go when he gets up, he will cry until I get everything in the bathroom and set up just perfectly to his routine.

Screech will start by asking for something. If I say no, he will start whining and “yodel crying”. If I still say no, he will start screaming yes at me and telling me over and over that he said please. If I still say no, he will throw himself in the floor in the way of whatever I’m trying to do at the time. When I step over him and keep going, he will chase after me screaming and then he will almost always hit me with his tiny balled up fist. When he hits me, I have to take him to his room and lay him on his bed. While he is on his bed he will continually scream and cry as loud as he can until he almost makes himself sick, kicking the bed, the wall, and anyone who dares come near him. He throws anything he can get his hands on and will intentionally hit anyone in the room with him.

Noggin will talk to you without ever looking directly at you but when I tickle him or get his attention doing something funny, he looks me directly in the eye with the most beautiful smile and belly laughs. He gives me hugs in the mornings and always tells me one of three things. These things rarely change.

Screech is terrified of being picked up, to the point that he will scream like his life is being threatened and cling to you as if you are a life raft in the ocean. He is excessively ticklish and likes to head butt everyone. He bounces on the couch almost constantly, bites his nails from anxiety, and “monkey runs” on his hands and feet. He sucks his fingers at night and still picks anything he finds in the floor up and puts it in his mouth. He chews on things that aren’t food, packs food in his jaws if it is hard to chew (meat, apples, gummies), and rubs his face on anything soft (stuffed animals, real animals, strangers’ coats, people’s pants). The smallest cuts or scratches are a major crisis to him.

No; well-meaning stranger, relative, friend, tweep, blog commenter, and random salesperson; not every child goes through these “phases”. They aren’t doing it just for attention. My kids would almost rather that people didn’t look at them like aliens with multiple heads because they don’t want to make eye contact with you. They don’t need their butts busted. Most of the time, they don’t understand why they are being hit if you try to whip them. They aren’t brats and I’m not a bad parent. I am actually more in tune to what my children need than your average parent. They aren’t being disrespectful if they never look at me when I’m talking to them. We connect over the most important moments anyways and those aren’t usually in the store when I’m asking a random question about cereal.

No, not every child acts like this and I’m sure your neighbor with the autistic child would appreciate it if you didn’t give them the death glare when their child is outside spinning in circles and shouting random words into the sky. I bet the woman you saw in Wal-mart with only a couple of items in her hands who had to drop them and carry a 50 pound child screaming out the front doors as you stood by watching and not offering any help or sympathy could have used both in that moment. We all could use a little more sympathy and help every once in a while.

So, in conclusion, I would just like to say, THANK YOU. Thank you for taking the time to read this. Thank you for trying to become more informed about Autism and how it affects my little family. Thank you for not judging me or any other parent when you see them out with a child with special needs, be those needs obvious or not so obvious. Thank you for giving us the benefit of the doubt. Thank you for sharing a compassionate smile.

And if you aren’t already doing those things, I hope you will start this moment. It will change your world…and ours, too. One in every 110 children are diagnosed with an Autism Spectrum Disorder according to the CDC. That is much better odds than winning the lottery…or even that scratch ticket you may have bought before.

So…no, not every child acts like this…

but many more than you think.

The Sting...

I can imagine my palm stinging
After connecting with your face
The feel of the air
As my arm closes the space

Eyes wide with shock
I hope it rocks you to your core
Because to you I’d like to do this
And so much more

You’ve abandoned what was once
Our greatest human feat
Leaving behind small children
Who’s tears drop at their feet

I hope you know I hate you
In only the way a mother can
For hurting my sweet babies
When away from us, you ran

No, I do not love you
Nor hold you in my memory
You mean nothing to me now
And for all eternity

As for my sweet angels
I will give them my very best
Because unlike you
To me they come before the rest

I hope you burn in shame
And in the fiery rings of Hell
For we are free from your abuse
And are doing quite well

And the pain you have inflicted
On three innocent little souls
Will be made up for by their mother
Who will be there as each one grows

PTSD, defined

divorce

30 week twins

NICU

loss of a sibling

miscarriage

Grade III brain bleed

Hydrocephalus

double hernia surgery

cyst removal surgery

two cesarean sections

speech therapy

physical therapy

occupational therapy

domestic violence

Aspergers Syndrome

Generalized Anxiety Disorder

Autism

feeding issues

panic attacks

shunt

asthma attacks in the middle of the night

seizure brought on by fever

blood sugar crashing in the middle of the night

nebulizer treatments

fractured wrist

IEP meetings

social expectations

depression

developmental delays

learning an entirely new way to parent for special needs

jaundice

Bradycardia

ventilators

dating

financial worries

child support

custody

visitation

dysfunctional family relationships

alcohol abuse

anger

meltdowns

jobs

obsessive cleaning

rituals

bullying

crying

My entire life has led up to this moment...

Zero to Sixty...

With my son, Screech, there is no middle ground. He is either ecstatically happy, extremely upset, viciously frightened, running from one thing to the next, sensory seeking, or asleep. Even when he is watching a movie, he is constantly moving. He is rocking or bouncing on the couch, sucking on his fingers, or trying to wrap himself really tightly in a blanket while simultaneously trying to arrange it “perfectly” to his specifications.

He can be happy one moment, running through the house playing, and something will strike him that he feels he needs immediately. He has no patience so he will begin yelling from wherever he is until he finds me to ask me repeatedly for whatever it is that he wants. His voice will get louder and more higher pitched the more times he repeats his question. He will pace, run circles around me, head butt me, swing from my arms, hang off my clothes, throw himself in the floor and kick, scream, argue with me, cry, hit, wail, stand in my way, and mess in anything he can get his hands on until I either comply with his request or put him in his room for a timeout on his bed where he can safely meltdown.

If he is given a negative response, he goes from begging to screaming his request at me at full volume in a matter of seconds. He has been taught by someone that saying please should get him what he wants and so he will repeat to me that he said please and no matter how many times I tell him that he still cannot have what he’s wanting, he just becomes more upset. He doesn’t like to have to wait for what he wants either so telling him it is something he can have after he eats dinner or after a specific point later only succeeds in pissing him off further.

I have found that if I only need a few minutes to finish something before I can get what he’s wanting, I can set a small hourglass timer to give me two minutes and he will watch it and wait patiently. I’m still struggling to find a way to help him to not meltdown every time he doesn’t get the response he wants. I understand his frustration. I deal with frustration of my own, some of his making and some of mine.

I understand myself well enough to know that I am easily triggered by too much noise and too much commotion. I like things still and peaceful most of the time. If there is noise, I want to be in control of it, such as listening to music or TV volume. Most of the time that I am home alone, I don’t turn on anything except a song that I like. I don’t have cable and I don’t watch very many movies by myself unless I need an excuse to sit down because I’m tired. I get easily sucked into movies so if I want to accomplish anything, the TV has to stay off.

When my son is in the throws of a meltdown, screaming at the top of his lungs, he is pushing me closer and closer to my own meltdown point. I just simply cannot handle the noise. These two combustible personalities clash quite often in my house and one or both of us usually end up in time out. As much as I love my son, I can’t handle these outbursts very well myself. My brain goes from calm thoughts happening point to point in a logical line, to a mess of thoughts where I’m trying to tune out the screaming, keep myself calm, and figure out a solution to the problem that will stop the screaming all together without losing my schmidt and screaming at him to just shut-up. I’m not proud of moments like that and I’ll be honest and say we’ve had more than a few over the years.

Noise and being screamed at make me do one of two things; if the screaming scares me, I shut down and go into tune out mode where I won’t hear half of what you’re saying unless you approach me enough that I’m afraid you will harm me, or if the screaming annoys me, I will lose my cool and scream back not really taking into consideration what I’m saying, if it even makes sense, and if I’m going to hurt anyone’s feeling by what I’m yelling back.

I also have a very hard time apologizing for situations like this because I feel like I was right in how I handled it even if I said some ugly things. When I feel under attack I tend to strike back. Sometimes I strike back even if the attack was unintentional and my lack of a filter generally gets me into plenty of trouble.

I can remember an instance where I was arguing with my mom on a car trip about a person that she had planned to move into our home. She intended to do this to help the person out and actually give them a chance at a decent life. I saw this person as only a threat to my family because I knew how they behaved and I didn’t want them taking advantage of my mom. In some ways I still feel this way but I’ve learned to tamp down my feelings about it in order to avoid a fight. At the time that I was arguing with my mom, there were some underlying issues involving the death of my little brother who I was missing terribly. I had my own ideas about why this person wanted to move into my mom’s home and my own ideas about why she was willing to let them.

I took it all as a personal attack because I didn’t have any way to escape the argument (trapped in a car), I didn’t agree because of fear for my mom (I’d kick this person’s ass if they hurt her), and my lack of a filter caused me to say some very hurtful things (that if I had known how to explain my feelings better I wouldn’t have worded the way I did). Being unable to describe what I’m feeling because my brain gets all twisted when I’m upset has caused me so much heartbreak over the years. I tend to do something drastic or just flat out refuse to face the situation and run away. I don’t handle strong emotions well. I’m a zero to sixty person, just like my son.

I need to find some middle ground because two people who can’t handle their emotions will cause us trouble down the road. Any suggestions are welcomed. I’ll be discussing this in depth with my psychologist but I’d like to hear from someone who has the same issue with their children and themselves. Who else besides me has trouble with how they handle situations when their sensory issues are pushed?

Invoking the prayer of the parent...

The need for self-preservation wavers in the light of losing a child.

“Please take me, Lord, and save my baby. Please don’t let him die.” The number of times I have whispered this silent prayer are innumerable. Once after the first drop of blood five days after the positive pregnancy test. Again laying a hospital bed as a doctor wrote threatened miscarriage on a piece of paper and sent me home to lie in bed losing my baby.

Again in a hospital bed after being rushed to a labor and delivery room at 26 weeks pregnant with my twins. Again at 30 weeks to the day when the doctor told me they were going to have to take them, we couldn’t wait any longer. Again laying flat on my back with my wrists strapped down as I was cut open and the life I tried so hard to grow and protect was taken from me. Again as a small cry rang across the room, then again when a second cry was never heard.

Again as I stood wavering six hours after delivery beside an isolette holding an infant no bigger than a minute, dying to wrap my arms around him and press him to my heart but being unable to move him or barely even touch him. Again as his brother was rushed to the NICU to be with him because he began struggling, too.

Again as my child was rolled into neurosurgery. Again as my child Brady-ed, stopping breathing and setting off alarms all over the place causing a NICU nurse to come running. Again as an infection threatened my tiny baby. Again as he was wheeled into double hernia surgery and put to sleep.

Again as pneumonia tried to drown the breath from my toddler. “Keep breathing. Just keep breathing, baby boy.” Again after the third positive pregnancy test. Again on the delivery table just before an angry wail filled the air.

Again as I watched my child struggle to breathe and his eyes roll back in his head after a violent seizure in the back of my car. Again as I watched emergency room doctors and nurses work on my son and try to get him back to us.

This is less a prayer as much as it is an offering. Give yourself to save another. Shield the bullet, the tornado, the fist, the fall, the fury. Take the pain, the hurt, the anger, the grief, the worry, the worst of everything and anything for this love. The ultimate offer of protection from which there is no return. You can’t take this one back. Ever. And you never would.

I love you more than I love myself. No truer words have ever been whispered in tiny ears in the dark of night, in the glare of the brightest light, at the breaking of dawn, in the haze of twilight. This is the prayer of the parent. Let no bad happen. Let no harm come. And if it does, let it only fall upon me.

I love you more than I love myself…and this is how it should be.

Eyes heavy...

I love the way your cheek fits perfectly in the palm of my hand. Your soft skin feels like touching an angel’s wings. I gently sweep the stray strands of your golden brown hair away from your face and let my fingers trace your jaw line to the tiny folds of skin on your neck.

You have stopped moving, holding still as a rabbit when it senses danger. You are concentrating on just the sensations of my touch. Your tiny body lays limp beside me with your head resting on my belly. You are breathing slow and easy so as not to distract yourself from the feel of my fingers tracing your name on your bare back.

I watch your eyes flutter closed as I continue to spell out my love for you across your spine to the soft spot at the base of your neck. I twirl your hair around my finger and tickle your shoulder with it. You smile and sigh but never open your eyes.

I continue tracing the story of you across your back, printed letters that pause with the breaths I took waiting for your arrival. Your breathing becomes deep and regular, your eyes heavy, your hand gripping your butterfly blanket relaxed as you start your journey to the Land of Nod.

I curl myself around you, shift you to my softest spots as you snuggle against me, and cradle you in my arms as I transfer your easy smile and silken shelter to your pillow. Pulling back the curtain of your hair, I kiss your cheek, your ear, your neck. You burrow against my cheek and I breathe your scent in deeply; baby wash, clean linens, and still slightly damp hair. I tuck your comforter around you then proceed to cover you with your butterfly blanket as well. You pull your blanket up and tuck it under your cheek with your tiny hand.

Smiling, I whisper in your ear that I love you. As I shift to standing, you spring up in your bed demanding hugs. “Mama gets the best hugs ever!” “I love you, babygirl.” I lower you back down to your pillow and slip my hand from beneath the slight weight of your head. I hesitate to leave you but know if I stay you will be wide awake again in only a few moments.

I move across your darkened room and turn the doorknob. As I am pulling the door shut and beginning to lean back to draw myself from your room I hear your precious voice say, “I love you, mommy. Have sweet dreams…”.

I whisper “I love you, sweetie. You have the sweetest dreams, too.” and I pull your door shut. I stand in the hallway outside your door for a few moments listening to see if you are going to try to follow me. Your room remains silent so I place my hand over my heart and walk softly across the wooden floor to my bed with a smile on my face.

“Goodnight, sweet babies of mine…”, I whisper as I tuck my own quilt under my cheek and snuggle alone in my bed, eyes heavy and heart full.

Keep telling your story...

I tried to speak to you, Mr. Mullet, as you were standing in line in front of me and my three children last night. I tried to tell you my boys were autistic when you shot me that dirty look because my son bumped into you twice. I know you heard me tell him not to bounce off of you because you didn’t like it the first time he did it. When he did it a second time while I was trying to distract his little sister from pulling books off the shelf behind us in the library, you looked at me with a glare and a loud sigh.

Those two actions spoke a thousand words. “Why don’t you get your child under control?” “What is his problem?” “He’s a brat who needs a good ass whippin’, isn’t he?” I could write a book full of the things you probably thought of me as I stood in line with my three excited kids. I’m sure the lack of a ring on my finger made you think I should have kept my legs shut. It probably even made you wonder if they all have the same daddy (They do. I was married to him and he beat me so I divorced him. Simple really.)

I smiled at you and told you that the boys have autism and they don’t handle waiting in lines very well because they have a need to move a lot. You just looked at me with your eyebrows pushed so far down that they were practically crawling off your nose. I’m sure they would have enjoyed swinging on those long nose hairs of yours.
You moved your foot huffily when my little boy sat down on it because he was tired of standing and wanted to roll around on the floor for a few minutes. I apologized and moved my son over so he could sit on my feet. He apparently liked your shoes better because he kept trying to touch them. You just moved further away and turned your back to us.

Your daughters were watching the entire time as you behaved like a jerk, never once even speaking to me. They were beautiful girls with long blonde hair and adorable dresses. They tried to play with my little girl while they were in line and you kept hustling them away from her like you thought we had the plague or something. I could briefly see you looking down with a smidge of fear in your eyes. We’re nothing to be afraid of. You don’t catch Autism from another child. It isn’t a disease, it’s a neurological disorder. I would have told you all about it as we waited in line if you had been willing to listen. I try to take every opportunity to educate others about my sons’ conditions because 1 in every 110 children is autistic. That’s a large number. Your children probably already go to school with several autistic children that you know nothing about. They may even be friends with one. They seemed pretty sweet despite your intolerant attitude.

I’m trying to change the world, one person at a time. I’m only one Aspie mother with two autistic sons and a neurotypical daughter that lives in rural Virginia. People in this area are closed-minded and afraid of anyone who appears “different”. I know this, I grew up here and I’ve come to expect the dirty looks and whispered comments. I wish I could change the way you looked at me. Acceptance is hard to find in a place where the only accepted people are the ones who look and act just like you. Yet I kept trying.

I refuse to let one person in line with a bad attitude silence me. I’m here. I may be painfully awkward speaking to you. I may have a hard time making eye contact and I probably won’t shake your hand but I am sincere in my efforts to share information about Autism and its effects on my children. I would have even told you about Aspergers and how it affects me if you had given me a few moments while we spent an hour waiting in line to see Santa.

You see, my children were excited to see Santa this year. To you that may not mean much but to me it’s a big deal. It’s a huge step brought about from story after story and movie after movie about Christmas and Santa and presents and candy canes and Christmas trees and ornaments and sleigh bells and reindeer. It’s a hard-earned victory from weeks of preparation to stand in line, walk up to Santa, sit on his lap, and have their picture taken. It means my heart hurt when I had to tell the woman taking pictures that my son wasn’t going to look at her because he was autistic and he didn’t make eye contact. I was just happy to get him to the point of not being afraid of Santa. I would have settled for a picture of the back of his head if it meant he wasn’t crying or melting down after waiting in line for so long.

So, Mr. Mullet, I just want to let you know that even though you didn’t take the time to listen to me, others out here on the Internet will. They are taking the time to read this and comment. Some are going to learn that meeting one wrong person who won’t let you tell them about your sensational children is not the end. It is merely a jumping off point for you to tell that exact story to someone who understands; your tweeps, your parents, your friends, your family, your support group (whoever and where ever they may be).

My autism parents, grandparents, siblings, friends, families, and loved ones, please, don’t hesitate to try to educate others about Autism. For every one person who will not listen to you, there are many more who will and who will take away from the conversation a greater understanding and a change of heart. “Pay it forward”. The more people who know about our beautiful, special, sensational children, the better this world will be. Keep telling your story, even if it seems no one is listening, because I promise you I’m listening and I won’t stop until everyone I know learns a little something about Autism. You shouldn’t either.

XOXO and Happy Ho-ho-holidays,

Forgotten

Why I write...

No one knows what swims in my head all day long. No one but me.

If I don’t write it down, how can I expect anyone to know? My mom has told me that she’s gotten a greater insight into me since I started blogging. She can read what I’m writing about and she knows where my mind is on any particular day. I’ve always found it easier to write than to speak to others. The written word is where my strength lies.

So now, I’ll tell you a few more things that you don’t know about me. I hate to puke. It makes me feel out of control of my body and I hate it.

I won’t eat spaghetti o’s because I got sick one time when I had eaten them and now

I can’t put anything that tastes like that in my mouth without my nose burning.

I don’t like the lotion my mom wears because the scent is so strong that it gives me a headache to be around it for very long.

Any time I’m around cigarette smoke, I feel like my lungs are going to shut down. I can seriously barely breathe. It makes my food taste terrible and I can smell it on clothes even if someone has just walked through a room where someone else was smoking.

I love the sound of someone typing on an old typewriter. The sound of the letters smacking the paper is very purposeful to me and it’s a satisfying sound.

I can’t eat onions because of the texture. I don’t mind the taste that much.

I like crunchy foods and finding a chip in bag that is really hard is like winning the lottery to me. I love jaw breakers because of the crunch when you bite them.
Sometimes I crave meat because I want food that I have to really chew to eat.

I love soft blankets but I like them to be heavy. I want to feel a blanket settle around me so that no air can get under it to me. That’s why even in the hottest times of the summer with no air conditioning, I had to have a blanket to sleep under.

I love the feeling of resistance when it’s really windy outside and you’re walking into the wind. If I could walk in hurricane winds, I would. My favorite times at the beach are when it rains and the sand is packed down hard and cold and the wind is blowing the waves hard against the shore and making a loud sound. It blocks out everything, even the sound of my own breathing.

I hate to be picked up and I’m terrified of the Ferris wheel at the fair because if it stops with me on top I’m afraid I’ll be dumped out. I like the black widow ride though because it squishes me against the side of the car I’m in every time it swings around.

I’ve always been a bookworm because reading allows me to block everything else out. I can tune into a book or a movie and everything else goes to the background because I can hold a very intense focus on either of those. Plus reading a book allows me to keep to myself and not have to interact with anyone if I don’t want to. No one looks at you funny for sitting in a corner by yourself if you’re reading a book.

I love to work puzzles because there is a definitive end point and they can keep you occupied for hours. It’s satisfying to me to be able to see something finished.

I love post-it notes because they are stacked perfectly and all the corners line up. I like certain ink pens because the ink lays on the paper just right. I hate writing with a regular pencil because the lead makes a weird scratchy sound and the erasers leave little bits of twisted up rubber all over my counter top.

I love the sound of an electronic calculator when it prints and I hate a quiet computer keyboard but I don’t like buttons on my phone to make noise.

I have trouble asking for help because I have to ask in person and if I have to borrow money, I spend a lot of time worrying about paying it back until I get the money together to pay back what I borrowed. I will ask someone else to kill a bee or spider for me though because I’m more terrified of those than I am other people.

I spend a lot of time in my car cursing other drivers because they don’t use common sense.

I like mechanical stuff like car engines and clockworks and complex motorized things but I hate to get dirty so I could never work on a car engine.

I hate for my hands to be sticky or sweaty but if I get something like baby powder on them that makes my hands feel smooth and dry I like it. I only put lotion on the outsides of my hands, too.

When someone else uses my computer keyboard or my mouse, I will clean it with alcohol. I don’t like to drink after anyone and I hate if someone eats off my plate unless I offer them a bite because it upsets the sense of order I have for my food. Food shouldn’t touch on a plate either.

I like apples, pears, and peaches because they have a “clean” taste. Chocolate, caramel, and ice cream are “dirty” foods but I like them. I just have to check my teeth after I eat them. Gristle or fat in meat will make me gag, especially if I bite into it by accident.

I only wear baby powder scented deodorant because I can’t smell it and I only wear perfumes that can barely be smelled. I love almost anything orchid scented though.

I don’t like dangly earrings. They have to be small and close to my ears so that they don’t snag on anything. I won’t wear bracelets because they get in the way of my wrist touching the table top when I’m writing.

So, as you can see, I have a lot of little idiosyncrasies. All of which I wouldn’t be able to really describe if someone asked me about them because I would have a hard time putting them into words.

Controlling me...

Today I made a deal with myself. I will not yell.

I will not yell down the hall when dinner is done, I will walk to where they are and tell them in a nice, soft voice that it is time to eat.

I will not yell when they are being to loud for me to handle. I will try distracting them or redirecting their energy into a song or nursery rhyme.

I will not yell when I have a bathtub full of water ready for baths tonight. I will make a game of coming to the bathroom and getting in the tub.

I will not yell when the kids are fighting or arguing. I will separate them and give everyone some space to calm down and make a better decision. I will offer choices instead of ultimatums.

I will not yell when I stub my toe, step on a toy, trip over my own clumsy feet, or bang my elbow on the counter. I will do the ow, ow, ow dance followed by more dancing if the kids see me and think it's funny.

I will yell if I see someone doing something dangerous that could get them hurt but I want yelling to become an "in case of emergency" thing so that they know when to recognize one instead of everything being a "high alert" issue.

When I get the urge to yell, I'll find a good Linkin Park song in the car and I'll scream my guts out all the way to work. I'll feel better and the kids won't be subjected to it.

It's time for me to start working on my bad habits and finding more self-control is something I need to work on. Wish me luck because I'm gonna need it...oh, and the reminder to count to 10 before reacting... *fingers crossed*