Teenager in the House!

13 Things I have come to realize as I reflect and review thirteen years of being Ayden's "Ma"

1) He is my first born, and for that reason alone....I will always be a first time mom because everything he does is always Our First.

2) I still cry when I see him in the arms of his Daddy 

3) . . . and of course I cry when I see him in allllllll of the Arms that held him - and I am glad I have the photos, as some of these arms are no longer here.

4) Birthdays are very emotional or I cry at the drop of a hat...take your pick 

5) Orange Soda smiles are Ayden's favorite Birthday accessory.

6) He has the BEST dimples
 
7) He is an AMAZING big brother.
 
8) It is a blessing he has always taken his time in everything, he has been my teacher in learning patience, because I have had no other option 
 
10) He owns an obscene amount of Legos - and shows no signs of stopping. We love that too.
 
11) There was a time we fretted over him not saying Mommy and Daddy enough? It was an ah-Ha moment when we realized he called Collin and I "seedyhunny", as in Sweetie and Hunny which we called each other. This lesson still stands today. He is always paying attention. He is always tuned in to things around him, and He will always show you some detail you never even thought about.
 
12) He is 3 years away from Driving????????
 
13) As much as he loves all things Marvel/DC, one thing is for sure: He is my Super Hero. He shows me year after year, If he can do it. So can I. What ever IT is. 

On the Road again...and no chance of being THERE yet.

What I mean by "not there yet" is quite simply, there is no There. No final destination at which I sigh and say "ahhhhhh, there. All Done." One obstacle cleared, or question answered, just gives way for the next to enter and take center stage.

At this very moment, I am in the midst of preparing myself mentally for the next leg of the journey...figuring out the great disappearing Eyebrow mystery. The latest results from the Endocrinologist; she seems confident the hair loss is Not thyroid related - Good News? Kind of. So we take the lad to the Dermatologist to start researching the only other likely culprit. Alopecia. (my cursory research leans to Alopecia Areata specifically) This little trouble maker lurks directly in the DNA I have so graciously shared with my son. And you know what. It is the one I am the most upset with right now.  Of allllllllllll things why pleaase whyyyyyeeeee does the newest Color in our rainbow need to be something that affects his face. Something that everyone can see. That he will have to explain. Something that others in his peer group will certainly and typically target. Some out of curiosity, and others out of being bred poorly. He will have to deal with this and I can not do anything about it. We spent the first part of the school year in chameleon mode with his Bieber hair-do which I must add, even Bieber doesn't wear anymore? simply because it covered his browline. And then we Both had enough of the shag and he is now back to my clean cut handsome fella...who if I weren't informing you of the alopecia, you'd think took a razor to his eyebrows to look tough.

On the topic of strength....this amazing young man that I have been trusted with is by far one of the strongest I know. From the inside out. The hand he has been dealt, and the cards we keep turning over are NOT all Aces...if they are they are counting low. But he plays them anyway. And even keeps a fantastic game face! (albeit short a few brows and some patchy spots on his head) No big deal!Oh well! he says.  And so I follow his lead. Because I know that if I act like it is the worst thing in the world, he might think so too. I can't breakdown over it and then expect him to be stoic. So I bluff too, no big deal, right? Right. And most of the time that's where I am with it. But today. I am not. Today I am having a moment with it, and I want to put hair on Alopecia just so I can rip it out again that's how upset with "it" I am.

But he's not upset. So I am letting him "drive" this time. If he says on we go. Then on we go. All is not hopeless. He still has hair on his head. He even began growing his very own real life mustache this year too! And he's very excited about this. His best buds, Quinton and Amari do not care about his eye hair....they just want to play and hang out. His sister LoLo even received an Egyptian oils set for Christmas that includes an age old recipe for hair growth...which she immediately told me she will mix up for her best big bro. And so like that, we roll on down this road. All buckled in together on this road trip. Wherever it may lead. And ready for what happens next...wherever next is.

"In other words, the moment we quit trying to teach our son anything was the moment he started really learning."

Those words are spoken from the heart of a father who chose with his wife to educate their children how they define it not how a classroom does. I have struggled more than I ever show on this very very thing. Every year, at some point, sometimes a lot. Sometimes for just a moment. Since 2007. There are reasons why I would in a heartbeat! And I have just as many important reasons why I have not done so already. Some have to do with my kids, my son, his ASD, and many Do not at all. They are far more personal. When I read Ben Hewitt's quote above, I can tell you I understand to my Core what he means. And Why I COMMEND (not CONDEMN) the parents who have their sleeves rolled up to Un or Home School no differently than I do the teachers who have their sleeves rolled up with me while we Building School. <3 

Should you happen to be a nay-sayer of different ways of Educating, or at the least are an eyebrow raiser...if you hear nothing, then I ask you at least please read the words of not only of Aspergers - A lighter shade of blue shade of blue about this, but the Hewitt family in their blog; We Don't Need No Education . When others do things you may not necessarily do or understand it is easy to judge them for doing so. Maybe the question you should be asking is not why someone would do "it", whatever IT is. But Why you need to know or approve of "it" instead? Perhaps their Why is not for outsiders to understand. And they shouldn't have to explain it. So many factors go into that decision. Be it special needs or bullying, illness, or something deeper - it's none of anyone's business to weigh in on. Especially if at the very end of the day, you are just opining and are not personally, physically, financially, or emotionally invested in the situation.

LOOKS LIKE SCHOOL TO ME???!!!

For as long back as I can find, there have always existed MANY ways to learn, and in their time, they were the Traditional way to educate. Nobody seems to mind all the child actors not getting "traditional classroom instruction educations" in quite the same way as they mind the parents who sit down to do it themselves? Even today, there are schools with out walls, private schools of all types and religions, Montessori schools. And so on. All operating in their own constraints. Some following to a T a curriculum, others loosely defining it. Seems to me we did just fine as a country being settled long ago, and long before then, countless civilizations building themselves up out of the dirt with not a classroom in sight. Or maybe only one, in town, if you were lucky to go & could get there. And not old enough to be needed working. Some children left home, to monasteries, others to the private school of choice, some young girls left home to "earn their keep" in the home of some socialites or high class family, in exchange for a chance to go to school for nursing or teaching or secretarial. Or a young boy who gets the chance to Apprentice for his education, leave home and become the worker for some tradesman. There were those children educated in secret, by Master's wife or own kids. And still some children Never got the chance. And yet somehow, no matter the How, still went on to create, invent, and revolutionize.

Bottom Line, let us all just agree on the Age old Principal, "there are more than one way to do most anything."  5 + 5 is 10 and so is 6 + 4 . Let us all just agree that as parents we want the best for our children. Wherever we deem that "best is". And above all else, meets our child's needs best. We don't all have to do the same thing to reach that result. And sometimes, that approach wouldn't work even if you demand it.

ONE SIZE, AND YOUR SIZE DOES NOT FIT ALL

We Must Remain Blind, Or we Shall never See.

If you knew the ending to every story...the good ones. The Scary ones. Even the very sad ones? Would you read them? What's the point?  If it's too sad you may avoid that one, and likewise, if the person you want to save the day doesn't or the Prince doesn't Get the Princess, maybe you'd skip that story in favor of one that turns out just how you want??  You would miss out on all the other details or lessons by picking only what you like. True in life as well. If I told you here! You can have this Awesome guy - he will be everything you ever wanted  - but he is going to die in a car crash about 10 years into your marriage.  Or you can have the "Almost as good" one next to him, and he'll live to be 90? Would you jump at the the chance for the one you will lose or take comfort in the other option because it's safer. Or so it seems. In the parenting community of 'special needs' children, whatever they may be this is the recipe as well. Destiny. If God told you I can give you a baby. Right now. He won't speak. He may not have use of his legs And will need assistance all through life...would you jump in line? See The Universe knows better. That little light, that little soul needs a mommy & daddy too. Unconditional Love no matter how long he is here. 7 Days or 70 years - that child deserved to be fussed over and wished on while riding safe and snug in mommy's tummy. He deserved to be cared for and worried over by family and friends. And that may not have happened IF YOU KNEW. If you knew that it would be hard, you would have heartache, disappointment, and more bad days than good. Would you still. Regardless if the struggle is lifelong disabilities or a medical emergency. Regardless if we are talking about children, or relationships, or even taking a new step in life. Because that's what I mean. Life.

Not everything can be planned to a tee. Not everything Looks like what you wanted.  One of My favorite quotes? "Faith is believing in what you can't see so in the end you can see what you believed in" - Because what I have learned, and many of you as well - that when looking back, you find that you wouldn't change a thing. That even though something did not work out as you thought doesn't mean it did not work out. What you gained, or how you grew in that loss shaped you. Changed you. And In hindsight you would still do it even if the result was the same. Parents of children with special needs may wish for struggles to be easier, of cures to be found But when it comes to their child, they would do it again just the same. It's along the lines of the step on a mosquito in the past and change the future. Perhaps you could make a wish and have a "perfect" child? But maybe to have that life changes the details of the one you are in. In the life with a "perfect child" maybe your husband leaves you. Or You married someone else? Destiny is set in stone long before we walk it. Which is why you can't just wish it away. Or You wish away other parts as well. 

As I write these words, my heart is aching for a dear friend, her husband, and their families as they say goodbye to their sweet son. Their arms longed and their hearts prayed for this miracle for a very long time. I want them to never forget that The Universe heard every prayer. That the Heavens held a little shooting star, a bright light that would need to be loved and wanted for so intensely every single moment he was here. BUT you couldn't know for how long those moments would be...because if the Universe told you that part, maybe nobody would have been up for the job.  I want her to know that the Lord answered her prayer to be a Mommy. A Mother's love knows no boundary. Knows no Limit. It transcends Time. Space. Ages. In every single sense of the word that honor was Given to her, and will be hers until eternity when she gets to hold her sweet baby again. Though the story is full of turns and twists, many you did not choose - I know you KNOW now, that you would still choose to be his Mommy over and over. Because that is who you were meant to be. Your story is not the only one that is being written. Remember! A little angel wished for a Mommy & Daddy to love him no matter what! And you did!!! ohhhh but you did. You answered every little prayer he had too <3 Hallelujah.

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!