the Sensory "thing"

And why I Strongly Dislike hearing about "the 20 or so other kids in my sons class". Because I don't think those 20 or so sets of parents of those 20 kids have to concern themselves and answer questions regarding MOST of the things in the list below. Nor do those 20 children physically cope with those "sensory things" to the extreme a child with ASD does just to live in their surroundings. And once again, no 2 reactions or triggers are the same, if you also have other diagnoses it can make matters even more extreme. I also can appreciate that Spectrum or not, other parents are still dealing with their own lives, their children's lives, and being overwhelmed overstimulated can have ripple effects no matter who you are. We all have some hodgepodge of these sensitivities, Do you like your sleeves up or down? Fan blowing on you or no way, Do store smells make you gag? Do you sleep with your feet tucked in the blankets or out and free (one of my own) See we all have these Isms if you will, just not to the extent that you have to adjust your Life or thought process. Families and children on the Spectrum do. It's not that Ayden does not Want to do it like the other 20 kids. It's just that in certain situations, under certain stress, or for reasons we may never know! Sometimes, he just can't. And So we adjust. I don't judge others shoes, but since nobody walks in my flip flops (again the whole covered toe thing) I really don't want my life compared to others. But you can always understand it. 

Welcome to your processor:

And when certain components are overworked or not receiving signals, here is what may happen:

Tactile
Avoids casual touch from classmates or teachers
Becomes “silly” or annoyed when touched
Craves excessive physical contact with others
Distressed by messy hands or face–glue, clay, paints, sand, food, etc.
Dislikes or craves certain textures– materials, paper, toys, etc.
Distracted by clothing or shoes
Chews or sucks on clothing, hands, pencils, others objects
Craves or avoids hot or cold items, water play, art supplies
Disturbed by vibration– such as air conditioner or trucks
Tactile stims–tapping, rubbing, squeezing, banging

Vision
Squints, blinks, or rubs eyes frequently
Makes poor eye contact
Struggles with reading
Has difficulty with eye-hand coordination–beading, writing, drawing
Difficulty copying from the board
Distracted by glare, bright light, fluorescent lighting
Distressed when lights are dimmed or by the dark
Struggles to follow moving objects or people
Poor ball skills–catching and/or throwing
Easily overloaded by crowded visual fields
Visual stims–hand flaps, flick fingers in front of eyes, spins objects

Vestibular/Balance
Avoids changes in head position
Seems clumsy, moves awkwardly
Excessively cautious on stairs
Slumps in chair/sits in W-position on floor/needs support for floor sitting
Touches furniture or walls when walking
Rocks in chair, wraps legs around chair legs
May fall out of chair or onto another student during floor time
Fidgets constantly
Seems restless or always “on the go”
Seems lethargic or hard to “wake up”
Gets dizzy easily
Avoids or craves moving playground equipment or riding on bus/in car
Difficulty using playground equipment–slides, swings, ladders, sandbox
Vestibular stims–spinning, rocking jumping

Auditory
Distressed by loud noises (fire drill, PA announcements, gym whistle)
Disturbed by sounds such as singing and musical instruments
Complains that everything/everyone is too loud
Speaks with a very loud voice
Speaks with an unusually quiet voice
Doesn’t seem to hear you
Has difficulty filtering out noise and focusing on teacher’s voice
Frequent outbursts in gym and recess
Frequent outbursts in cafeteria or assemblies
Seems to learn more easily in one-to-one situations than in a group
Auditory stims–hums, repeats, makes odd noises

Proprioceptive
Poor body awareness–doesn’t know where body parts are
Bumps into classmates, furniture, walls
Difficulty grading force– breaks crayons, pencil points, toys
Poor handwriting– difficulty forming letters, presses too hard or too soft
Accidentally spills when opening containers, pouring, or drinking
Drops items on floor, slams doors although not angry
Crashes and falls on purpose
Lies down on floor at inappropriate times

Smell and Taste
Complains about smells
Complains about tastes
Doesn’t seem to notice strong odors–glue, markers, food
Picky eating or very self-limited diet
Acts out at snack time or in cafeteria
Mouths or licks objects and people
Smells objects and people

Behavior, Learning & Social Issues
Craves predictability
Engages in repetitive play
Doesn’t understand concept of personal space
Has difficulty joining group activities
Has difficulty with transitions between activities
Difficulty initiating and completing tasks
Struggles with sequencing activities
Poor organization, loses things frequently
Easily overwhelmed or frustrated
Frequently tunes out or withdraws
Frequently acts out or has meltdowns

. . . . and more.

the Scream? or a Sensory Overload? You be the judge. . . 

Sensory Processing is at the heart of the Autism Spectrum Disorder.  It impacts everything. When I describe Autism Spectrum and Ayden to his team of teachers at some meetings :) I use a computer analogy.  I have 5 children. Picture for a moment they are all identical Computers sitting on my desk....they look just about the same except maybe the Gavin Computer is Blue, and the Cohen Computer may be green, Ayden's of course would be decorated with Lego something, and so on...little cosmetic differences, or some models are newer but all in working order.  All 5 of my computers are processing information, and spitting it out of their "printer" onto paper (be it classwork or conversations or executing tasks). They all look the same.

The difference is what you can't see. That one of my computers is actually processing all of the numbers on the alphabet keypad, and all the letters are coming through on the number keypad. And the sound is hooked into the visual component. Plus there are files being stored inside of files and none are in the same place twice. Like many complex machines, as this information meets in the CPU (central processing unit) this one computer begins to hum, and his fan kicks on. Inside it is as if a helicopter is preparing for take-off Whir whir whirrrrrrrrrrrrrrrr spinning as it rushes to grab the info coming in. The other difference nobody saw was that unlike the other 4 computers, this one not only took down the information I told it to....but it grabbed 100 pieces of information it did NOT need. And is now also sorting those back out. When finished, after much noise and maybe a few restarts, it will produce the tidy little papers with the information needed.  The back of the computer will be hot and it will load pages slowly until it recovers from the job, but it gets it Done. All 5 computers produce the same end result...each with their own embellishments and flare like different Fonts if you will, and that one Lego computer may have taken 3 times as long, but there the papers sit. All done.

It is in the processing part that I am the most amazed at my son. He is like a perfection game, where you pop it down....trying to load it up with pieces before it POPS, because it always does <3 He skips, jumps, waves, walks, spins his hair, paces, hums, stares, whistles, sits quietly, doodles, forgets, repeats, soo many different things at different times, and sometimes! Not at all! All just to be in the world around him. Everything is louder brighter faster smellier bouncier and just MORE. He is using all his senses, all the time and sending it on the wrong train to get to the station at the top. IT gets there...just a little messy and late <3 He has found ways to quiet some of the noise down all on his own, and other times with some help. Especially during his school day. WE have a great group of teachers and admins on Team Reid. They are drafted to the mission as well, and have proven to be caring and open and most importantly! they listen. I hand them papers when they hand me some. And we all figure it out. We come back to the table and fix what we need. I know not all are lucky to have that support in place for their child. I pray you find a way. I don't have a secret to tell. I just always share information with them...These are great for Parent/Teacher Conferences and 504/IEP meet and greets:

Strategies For Working With Kids With ASD
Classroom Tips
What Every Child With Autism Wishes You Knew

My advice to parents that do not have kids on the spectrum? Learn about it anyway, because these are the kiddos in your kids classes too. And the more you know, the more your kids know, and that's a good thing.
AWARENESS IS THE PATH TO ACCEPTANCE. My advice to teachers?  REACH TO TEACH! and you can quote me on that :) Do what ever you need to do to teach to whatever minds and learning abilities are in your seats. There is no magic wand. There is you & them. I just had the several years Before school with my child to get used to it. By far one of the things that I struggle with the most personally is sending him in to a landmine of attacks on all fronts. Daily. #sensoryoverload.  It seems so contradictory! I wouldn't send him into a beehive! (he happens to be allergic) but I will pack him up every morning for school. The turmoil around this is outweighed ONLY by the fact that HE wants to. The joy he has in seeing his teachers, his pals, Social Studies (a fav) and eating lunch of course! He just wishes that he didn't have to do math to talk mr.mathteacher, get through the clamor of the hallways in under 3 minutes or sit in the actual cafeteria to have lunch. They are 2 separate worlds that are being balanced For him. And for me. Or simply put, Just a day in the Life in the Rainbow.

Lights, Walks, Awareness! Go....

Ahhh, April - Autism Month! Time for blue lights, puzzle pieces and Autism Speaks campaigns. Time for memes and blogs (like mine) to spend 30 days sprinkling awareness on the masses and bringing NT's (neuro-typicals) everywhere into the fold. Okay not so much like that but kinda. but I hope you know! For every 1 you hear from there are 5 just plodding along, a little more quietly. Because today after all really is just April 1st. April Fools. When you have a child/loved one or you yourself live in the Spectrum of Autism Disorders - EVERY day is autism awareness day. It was not gone yesterday, and we do not turn it Off on May 1st.

Autism Awareness is not meant for us Rainbow dwellers. It is for those not familiar, not so In the Know. And it's a good thing to share. To do things that spark conversation, or make folks ask questions. Autism Speaks happens to be one such organization that gets a lot of "bells & whistles" for April - they are the creators of the Light it Up Blue National campaign. They have a "brand" and at this point, lots and lots of people recognize the Blue Light, the puzzle piece and so on. Isn't that awareness?? Isn't that a good thing? There are many controversial views on the Autism Speaks Organization. What they "do" and for who. And so on. You can find research and info to support either position you want to have, either for or against them. I can only weigh in on mine.

Autism Speaks does not speak for Team Reid, Autism the disorder Speaks through Team Reid.  We do walks and turn on blue lights not FOR Autism Speaks but because of them. Because they remind me to speak up, that we are not alone. That we don't have to be quiet. That there are changes being made all the time to make sure the voices of the kids in the spectrum are heard, be it in their classes or communities and I am glad that I know Autism Speaks has a bigger mouth than mine, and can go to the unaware at the local legislation level all the way down to the big Hill and get shit done where I alone can not.

I don't think they are without flaws, and I don't think they are the Only 1.  I know there are many many organizations worthy of my support that are doing equally as Big things for the cause. If you are in the Rochester NY area check out Kite Flite or the Walk With Me Easter Seals event, I will give to or do their events too. Shoot, enough ambition and I will create my own even! just you wait <3 I think raising money & giving back is supposed to be done with out my own agenda. Just in the spirit of giving to a cause or supporters of a cause that matters to me. That I know. But if I do have an agenda then here it is: WE do it because WE want to.  Because we want to talk about Autism and we want you to as well! We want to talk about the kids and families living with Autism Spectrum disorders and how to make classrooms and communities a place of acceptance. I will light it up RAINBOW if I need to, but this month We Light It Up BLUE to support the families and kids in our community not "Autism Speaks the Organization".  We do what ever it takes because Team Reid is how Autism Speaks in our house. 

Little. Yellow. (red, blue, black and the like) Different.

Nope. Not talking about Nuprin. (does anyone remember that commercial slogan? or just me.)
No, I am talking about LEGO. Those blocky little bricks of various sizes. In our home, they are weapons of mass destruction. They somehow are found in every room. And I do mean every. There are heads, pants, wheels, cars. There are mini figures, there are games, even catalogs! There are partially assembled "creations" adorning most of the flat surfaces in our downstairs. It has been that way since Ayden was roughly 5, and his attention shifted from Thomas & All things Thomas related, to Lego.

He inherited his fathers collection, and all conversation could be had through Lego speak. We as his parents have indulged the Lego habit. We have been his dealers to this addiction! And I don't feel bad about it. It is a connection. Years back, it was the way to have discussions with Ayden. As he was not going to just walk up and ask you how your day went. I learned during the Baby Einstein DVD's run and the early Thomas Days  THIS was his chit chat. This is where we can reach each other for some common ground. Ayden is like a walking Wiki of sorts. He gathers information and categorizes it in his mind files so it is at the ready for any conversation. At 5 he could manage a few topics. Now at 12, his arsenal is massive. StarWars, DC and Marvel Comics, Harry Potter, Indiana Jones, Lord of the Rings, Hobbit, Pokemon, and this is enhanced by the fact that all of these themes are crossovers in Lego as well.


The conversational benefits are not just felt at home. He has honed this skill at school as well. He has a handful of friends that share lego magazines with him back and forth, trade characters and seek him out for his expertise. He will notice a sticker or picture on a desk in class that is the logo for a certain Superhero and amaze his teacher with his unending knowledge. And just try to catch him up. Almost impossible. Sadly, at his meetings this year we have all had a good chuckle over the fact that if he stored his Math lessons and other subjects he struggles with in the same way! WOW.  They all laughed harder when I said if you can figure out how to turn it into a video game or a Lego set he would.

 

And this realization was made even more clear yesterday on a run to Wally World (WalMart). Instantly he asked me if this was a lot of groceries or just a few because if it's just a few, he can stay in the car.  For obvious reasons stores are a complex situation for him. He does like them, in theory. And some days he can manage just fine, but yesterday I had Just picked him up from school, it's FRIDAY and even he knew it would be too much. Sound. Smell. Lights. And people. I assured him he could wait in the van, and asked him as an afterthought what was in the store he didn't want to deal with.  He matter of factually said, looking at all the people.  I don't understand why they look so "uuuuuuhhhhh" he said as he mimicked a zombie.  Their focus in the store distracts him. The looks on peoples face as they rush to and fro, trying to get to the isle they need. I do my very best to ignore any human when I am there, it occurs to me that he is actively trying to read them all....and if you can picture what you would like in "shopping mode" you'll see that for him it looks like everyone is mad and on a mission to mars. AGREED!!!!! I asked him what he does to make it better...without looking up from his comic book he says, "I just turn them all into Lego people in my head and the store too."

I looked at my buddy, and smiled. Of course he does. I can't think of a better way to make something seem less serious then to picture it silly.  See, case in point! Last Supper or Lego Party! you be the judge!

Like Water.

We are just like that. I read a quote today. And that was what was revealed to me when I did.

In the confrontation between the stream and the rock, the stream always wins… not through strength, but through persistence. -- H. Jackson Brown 

PDD-NOS is just like a rock. Or a few of them. Little pebbles in the path blocking up the works, making the stream branch out, around, over, under. Given time, it will break down that rock too...or at least smooth it out. And it does so by simply finding a way. We do that. Creating your own path is easy enough to do - just not always easy. You can get to Ohio by way of Texas...from NY. Trust me, you can - it will just take a longer time. And a lot of useless stops and detours along the way. Or it's the Scenic route! Depends on how you look at it.

Then I wonder if we are not really the rock? Equally as willful, Steady, constant, just trying to be a rock while this dang water keeps making it muddy. Chipping away. Pervasively. Shoved around by the current, wherever we land dependent upon where "the water" shifts us. Or worse, no movement at all...stuck. In the Mud.

And if that's too philosophical for your taste then by all means let me sum it up, we are Perplexed. By the very definition, it means: completely baffled, very puzzled. How poetic that "puzzle" is the word they used to describe it. On all levels, from watching our child figure this all out, to trying with all we have to help the school figure it out, puzzled (and exhausted) is what we are reduced to at the end of most days. Perhaps the most perplexing is just how often you find yourself back on square 1. Starting over. Gains made are seemingly left in the very day they were had. Be it Ayden's or the educators. For 1 all it takes is getting off track in a class, for the other, it is given up in the question of "If he would just....!" Ahhh, yes! If he would just and if it were JUST that simple. But it's not. However, it is consistently Inconsistent. Does that work for everyone?  Even I, a 12 year veteran can be lulled or get comfortable. I need to remember that "No News" rarely means "Is good news" - it usually indicates that Ayden has not relayed some info to me.  Leading to the eventual email or "update call" from the teacher. And POWW. The Nuclear Meltdown is imminent. Insert metaphoric red alarms and countdown . . . 8 . . 7. . 6

The actual tears were shed last night after days of math tests and trying to find them, what will I DO? They are lost, and is Mom going to find out, and I didn't do the corrections because I never wrote it down and and Math is next! oh no - aaaaahhhhhhhhhhhhhhhhhhhhhhhhhhh And now, Clean Up mode. I don my hazmat suit, I spring into action. Wipe tears, reorganize class folders, run kids to dance, do homework, make dinner, "re-group" , I send emails, make calls, fret, fight, and live to see another day. Yes. That was today. "Today was fun. And tomorrow is another one." And at the end of the day, If I am water, I'll make my way. And if I am a rock I'll be standing my ground. Puzzled as I may be, I guess I have that part figured out.

We Live For Life's Greatest Moments....

Whatever they may be. Because all too soon we know that other shoe will drop, Murphy's law will strike or any other cliche you can muster. The Greatest things are often swallowed up by the unforeseen things that pop up, the broken this or that, the bill that came for whatever and so we hold on to these little glimmers like Sunshine. We need them when life is kicking us in the teeth again to remind us it can't rain all the time. Today that ray of light was Ayden's 83 on his math quiz. The smile on his face and the bounce in his step (extra bounce in his step) are priceless. 

In our home, we celebrate GREAT Effort,  Not GREAT Percentages. I know that Ayden, most days, puts in the same 100 percent effort to achieve his 65 on that math test as the child who put in 100% and was able to breeze through with a 90.  Even amongst themselves we do not encourage comparison as far as grades go. We just encourage them to Try. At all tasks, liked or disliked. Just Try.  And for the most part, they truly do. I never doubt when I get that report card that they did not pour their blood, sweat, and tears into the classes.

I have no idea what his next test grade will be for his least adored subject, but today. TODAY he was part of the kids that do not need to have their test "signed and returned" or have to do pages of corrections. Today he was confident and sure of himself and "rocked that test" as he informed me. It really does not get much better than that.

Giveth Taketh Giveth

Ahh what a week! What a whirlwind! Successes and Setbacks, but we gladly take them all. And in stride. There is no other way. As Dori so wisely suggested, Just Keep Swimming. And we Do. And so does Ayden. Even when the tide keeps pushing him back to shore....and then suddenly he'll duck under the water and pop up 10 yards out and you are like, woah!!!! Or in our case, we smile. We knew ya could. Never doubted you for a moment. It's the other people who can't seem to be patient. And, so we swim.

Ayden's weeks often flow like this, good things and not so good things. Things he aces, things he needs to try again. For instance, Math blew up on him this semester, and his response was to abort the mission...completely. 9 Assignments incomplete as well as a handful of tests/quizzes in need of corrections and the ever dreaded, Parent Signature - eeeeee gads!  This is often anxiety inducing as well, he knows he has to tell me but he can't bear to tell me. I let him know the jig was up, I had an email from Mr.Math Teacher....the tears and disappointment spilled out of him, and night after night we have sat together in my room, pouring over PEMDAS and solving for Xes, N's and P's. I am hoping that I can connect for him the simple logic of: the more you do it the easier it gets? We shall see.

On the heels of such lousy news, Ayden surprised me completely! He announced he went out for Drama Club, and not just set design crew -  a real part! wow! Auditioned and everything, which included singing dancing and reciting lines. He was very proud of himself, and I was over the moon that he gave it a shot! He would have to wait out the weekend before learning, that alas he will not be the star of the stage for this upcoming production. He was so let down, but I rallied him! Hey, not everyone has it in them to even Go for it! That took way more courage then you know. That made him feel a tad better. Just a tad. 

But what really, really cheered him up? Going and picking out with his very careful eye, the most perfect gift for the most perfect lady. His crush of all crushes, "the little girl who makes hearts appear in the air like when Charlie Brown looks at the redhead girl, mom!" Crush. A beautiful silver pendant with her initial set in crystals, which Ayden also noted is the same letter for his name too :)  He came up with this all on his own! He also advised me that he would need to put some Hershey kisses in the gift bag too! I added a few rolo's for good measure. They are only 11 - I have to think what I would think if a boy wanted to give our daughters kisses. Chocolate or otherwise hahahaha <3 He came home yesterday to tell me, She jumped up and down and all her friends were like "awwwwwwwwwwwwww! that's so sweeeet!".

The grin, covering his whole face, from his crinkly eyes to the huge dimples in his cheeks said it all. And as if that wasn't enough, he shoots a phone number from his pocket for a buddy that wants him to come spend the night and play Lego Marvel for 360. So, mr.anti social is now making plans and taking numbers. Business as usual in 6th grade. All of which is subject to change next week. That's just how it goes.

THAT MOMENT WHEN.....

You get to see the look on the faces of 2 kids when you walk them in to the office so they can share a joke. The one where you are holding the door closed on a kid so he can't get in. Hahahhaaa, look at him try pulling and pulling, and a few fist pounds to the door too, atta boy!  I was driving by, just not in the loop. I was coming from the back lot and so it took a moment to turn around and park - I grabbed for the door and the nice little lads opened it for me!

"Oh! So it works!?!" I proclaimed.
- "huhhhh? yeh" 
"It's not stuck or locked?" I quiz.
-crickets
"So you were holding it closed? Why?"
"uhh..ohhh...it was just a joke....."
"Oh! Good, here lets go let the office know about your door jokes! Come on guys, they'll love it!"

Long story short, they let the office in on their joke. I let the office in on the fact the kids did NOT happen to know I was driving by, and I also added that generally in a joke - everybody laughs. "Did Ayden look like he thought it was funny? Are you guys such good buds that you joke around like that? Was he laughing? No No and No? Welp! That's not a joke then...got me."


As I left the office, one of the kids followed me and apologized - I genuinely thanked him and told him "I am a mom and let me assure you - if that was you on the other side of that door, I would have stopped my car for you too. Not sure if that matters to him but he even held the door for me again :) And away I went. Ehron dangling from me like jewelry. Off to pay my water bill and get home for the other kids. We have a band concert tonight! I have things To Doooo.  Ayden, blissfully unaware was staying after for a Drama club meeting. I have told him always, (all of my children) I have your back buddy even when you can't see me. Especially when you can't see me. Today that promise rings loud and clear.

And you better believe I do NOT think those kids are Jerks, or Baaaad....I get it. Don't assume for one moment that the reason I stopped was because I am a Helicopter Mom, unwilling to let Ayden or any of my children out in the big bad world! Ohhhh, quite the very opposite in fact. Ayden would never do that kinda crap, but when I was his age? I might have. And probably did. Ok, Did. Not too many people stopped me from doing whatever I wanted, or caught me telling "Jokes" and I often did not care if they did. 

30 years later nobody will ever judge me harder than I do myself. However, I have a whole lot of peace with that part of me these days. No matter the things I have done wrong, something I have done Right is right there in the actions of my children. My kids have hearts of gold. They are someone that would come up next to you if another child was being mean. They would eat lunch with you if you were sitting alone. I have never, of ALL the times I have been called to office, had to come address fighting or bad behavior.  Despite me, I have done that right. My kids are already so much better than I was at that age, I can't hardly wait to see how else they will amaze me.