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.

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!

Ayden the True Mommy Maker.....

Many Moons Ago I was not a mom. nor was I expecting.  But I had long dreamed what that day would be like, from the test to the delivery and beyond.  I had fancies in my head & ambitions to do everything better for mine than could be done for me.

July 2001 I held that stick shaking in fear and excitement replaced with an odd calm as my destiny was sealed with a tell tale  | |   (double line)


March 2002 I welcomed, fairly effortlessly I may add, my 8lb5oz bundle of baby boy into my arms - I cried all over his perfect little face - I breathed in his smell, kissed all ten toes and all ten fingers. I nursed him as fast as I could, and while doing so continued my once over of every inch of his bitty self - I believe now this is primal in mothers as I repeated this for the 4 that followed after. PERFECT in every way.



 

March 2003 Happy 1st birthday.....A full year under his belt - and a baby sister in my tummy, I was content to let him explore his universe at his own pace disregarding some of what the "books" say he should do & when.  He crawled, army style.  He walked, at 15 mos. He talked, in a language only we understood. But he knew colors, and all his shapes? He seemed to do things at his own pace, in his own order...you know that expression, marching to the beat of his own drum.





March 2004 The magic number 2.  Where you take stock of milestones and tho I am not a mom who compares, when there is another sibling in the mix, sometimes you see what your mind wouldn't. Differences. Subtle but there. And I could no longer be calmed with, "wait and sees"  At the 2 yr Dr appt I was looking for reassurance, instead we got a referral into Early Intervention and a evaluation for speech services.




March 2005 DISCHARGED!!! No longer in delay, at and above age level. Great News. or was it.  Finally in the company of Speech and Physical Therapists I had answers to some perplexing ?'s that I only talked to my husband about...

 

• why does he line up all of his Thomas Trains rather than play on the track with them....
• speaking of Thomas, I think he obsessed? is that possible? This and Baby Einstein rule his world....
• he refuses to eat anything with a pudding, mashed potato type texture.....
• we can not go to stores and fairs and places with echo type noise where Ayden does not become shut down, making noises or ignoring the entire situation all together.....

I heard for the first time at the last meeting, and I quote, "well, he's pretty typical for a spectrum kiddo". Spectrum? What is that? What do I do? Basically, it meant my son has these funny things he does & a very different way of processing what he sees & hears in his environment. And because he does not score in the 3 areas they test for with more than a 33% delay - there was no formal diagnosis and nothing but my sheer will to help him. So began my journey into the multi faceted realm of Spectrum Disorders in the Rainbow that is Autism.  They say if you have met one child with Autism, then you have met 1 child with Autism. The Puzzle piece is symbolic of how uniquely different Each & Every child is that lives with ASD. And Equally different are our experiences as their parents. From the diets, to the playing, the therapies and teachers, doctors, friends, family, and strangers. Not to mention the socializing, ostracizing, reading, researching, advocating & overwhelming world of ASD (nos)

 

But I know what is the same for those of us here in this colorful world.  There comes a moment, a very hard moment.  You Give back to the Universe the dream You invented, the Expectations you attached to this little miracle long before you held them, you make way to learn, for real what it means to be a parent. To see through new eyes who your child can become. Some parents embrace parenthood as their job to teach their children, meanwhile I live in the Blessing of being taught at every bend How to be a Mom.  Some kids make it easy and Ayden makes me work for it, THAT is the only difference and 1 that I can live with.

Preschool, Kindergarten, and all of elementary school came and went. With many tears, hugs, struggles, laughs, meetings and meetings and meetings for the meetings. Because of how "capable" Ayden is, he had no formal diagnosis for many years, The true way a child can slip between the cracks of the education system. And I have no doubt countless children who do not have me for a mom have. When there is not enough of a delay in the several areas that are measured then unfortunately your child is hanging in an abyss with no rope or tether. I was once told in a conference that even diabetes is a disability and would allow for accommodations and services not otherwise provided. Meaning? Get Anything and we can help, get nothing and welllllll.  Meeting after meeting I have had. I have explained in every way I can that the issues at school are Nothing like the ones at home, different environments altogether. I have come up with action plans only to have those that need to follow through abandon them after 5 or 6 times...because it didn't FIX him. I have felt the defeat of sitting in a meeting in April of a school year to hear the administrators be perplexed that despite what they are trying, Ayden still struggles. And All I can do is sit there and shake my head, biting my tongue wondering why it's Ayden's job to Be better? Do better? Do more? He is the child. We are the adults and you are the experts.

 

At the end of 4th grade, another year of juggling teachers, and finally after talking in depth with his pediatrician and sharing the notes from meetings and report cards, Ayden and I were able to get the much needed referral into Kirch Development Center at Strong. No matter what they said, I was ready to stand behind either decision - but in my heart I was hoping an afternoon visit would be enough time for the evaluator to "see" my little buddy for the Amazing kid he is. I was not disappointed. They asked Collin and I to step out and let them have some 1:1, and when we came back to discuss, the Dr let us know she had noticed :) some things. There was the telltale traits. The disjointed speech. Talking about things out of sequence with the conversation, repeating and hyper focus of topics he is a master of (Star Wars and Lego of course), stimming, seen as waving his hands and pacing back and forth. Able to solve in seconds the puzzles and brain teaser like tests, but unable to follow certain language patterns or cues. His IQ scores were above level, no surprise. His social scores in comparison have him tracking a year or more behind his peers...no surprise there either. All of this coming down to 6 letters. PDD NOS. Pervasive Development Disorder Not Otherwise Specified.



Meaning? Meaning in a nutshell he has these traits that are persistent in nature (since crawling age at least) and consistent with Autism Spectrum yet do not prevent him from functioning. And more importantly! it meant a chance for this glorious 504 plan we had heard of, this way of taking ALL of Ayden into consideration and making some tweeks to his day to help him better mesh with the chaos of school.






That was in the fall of 2012 - The day before his first day of 5th grade. Did it help? Well, by the end of the school year we had his 2 teachers unable to get their mind around why he still was doing certain things despite the 504. And all I could do was shake my head. BECAUSE IT'S PERVASIVE> but they want the 504 to Fix him, make him pass the State Tests, and get him ready for the vigor of Middle School. They actually spent so much time freaking him out about the State Tests and  how much harder middle school would be compared to what they wanted that his hair fell out. Stress induced alopecia. A patch in the center of his eyebrow and a dime size circle on the back of his head.

Year one with the diagnosis and 504 - are we any better? nope. Are we any worse? nope. I still feel the same sense of:  thousands of dollars in degrees between the lot of  them and somehow it is proven over and over how little they know about how to address this in their classroom, and even worse are no longer permitted or empowered to make those decisions case by case student by student. Nope, you must have an IEP or 504 to alter the "program" as seen fit by Albany & the Dept of Education. And even that only helps so much. Hard to fathom how a pandemic that affects 1 in 85 of your boys somehow is not getting the recognition or research it needs and nor are the very educators that will be with your kids, when all tallied up for way more hours a day in their 12 years of school than YOU will see them.

 

And so we go along, this is my story. It is still being written. Literally.  Even today as a matter of fact, I am fighting all my demons getting ready for Conference Day. The same old dreads are creeping in. I can see the forced smiles, the platitudes, the tell me one nice thing for every bad thing mantra...They were all notified by me at the start of the year to the PDD NOS. They all have their copies of the 504. They will all look at me and say, well we don't understand why this far into the school routine he still........ or he does real well but when it's time for a test he.......... or basically any version of that conversation where my only answer is "still? Still has Autism? yeah. I know.

I am so very passionate about this subject & the children who could be left behind in No Child Left Behind.  On my best days I want to change the world on this topic, On my worst days I am overwhelmed and frazzled. But I am NEVER defeated, as every morning I watch my son gather himself for another day in that landmine of triggers called school with a smile as big as his face, ready to "try again"...so Shall I.

I believe in Power in Numbers, share what you know, ask what you don't, & just be comforted knowing you do not trek this road alone. And above all else, laugh.