Clouds, May 2010

Clouds, May 2010

Tuesday, April 30, 2013

for you, Mr. Holland

For Mr. Adam Holland

This morning I
learned about the story of Adam Holland, a young man with Down syndrome. He is the son of Pamela & Bernard Holland of Nashville, Tennessee.

I am so outraged I wanted to do something.

This is the first thing I thought of.

It's a 2-minute, silent slide show. There are stills posted below as well, because the settings may or may not load properly. It seems when I inserted the file, it did not playback very well.


video


I suppose those defendants are not the only ones who can judge someone without even knowing them.

--

Here are stills of the 12 slides:
















--

Sunday, April 28, 2013

pigs must be flying.

Last week H had a play date with a kid from school, who used to be his classmate in kindergarten. I know this was particularly fantastic for H, but it was actually pretty incredible for me too.

Not only the fact that he had a friend over...
Not only the fact that the two boys played together so nicely
...


But...

H came home from school in underwear that day & I can tell you he was still in it during the length of the afternoon. And evening. As a matter of fact at one point the boys came back in the house from being outside, had a toilet break, & then returned outside to continue playing. Not just the other kid... but my kid, too


The thing is, every now & then there are moments with school work progress that make me particularly proud... such as this one:



To many parents these scribbles would be just that.

To me, this is evidence of when my son was instructed to color the boy's shirt yellow... the man's hat blue... the boy's pants orange... the man's pants purple... the hose green... the tomatoes red... the sun yellow...

My son who not only chose the correct crayons, but held them independently, & most importantly... proceeded to accurately follow directions. And sign his "H" at the top of the page.

SO huge.

But it's the days like Wednesday when his friend came over, which really stand out over time. So you can only imagine how long yesterday's events will continue to be embedded in my memory...

And not for reasons you might think. You will have to read to the end to see what I mean.

So, yesterday I was on my way home from my parents house & H was having one of "those" meltdowns in the backseat... similar to the one he had on the day of the ear incident.

Fortunately & unfortunately I know there are other parents who can relate to this... that feeling of traveling along on a highway (whether literally or figuratively but in this case was not the latter)... & despite being the driver... the one behind the wheel, in complete control... you actually have none over what is happening right inside your own vehicle.

I turned off the highway about ten exits too soon, pulled into the parking lot of a strip mall, & by the time I could've buckled Hayden back in he beat me to it. He knew exactly what was going on as soon as I prematurely pulled off the highway.

Unfortunately his sudden 180 was short-lived. By the time we arrived home there were things scattered about my truck which I didn't even know were in my truck.

(I would like to take a moment, by the way, to thank the inventor of child locks.)

These meltdowns are probably fewer than in previous years, but at the same time they are definitely worse. This is partly just biology of course... he is bigger & older so therefore stronger & smarter. These are details which undoubtedly improve the fight in him, so-to-speak. (And I hesitate to use the word "improve".)


But there is something else which happened yesterday that is equally memorable, yet significantly more profound. You might have to read the next paragraph more than once.

For the drive to my parents house, Hayden was in underwear. It is about an hour drive. Upon arriving at my parents house, he accepted being led to the bathroom to pee. Then we went out to lunch at a diner about 10 minutes away. He was still wearing those boxer briefs underneath his jeans. Then after lunch (drum roll please)he accepted being led to the public restroom at the diner & used the bathroom (even while verbalizing "it stinks"). This was the first time in his life (or mine) that anything like this has ever happened. Then (yes, there's more) we walked over to a nearby store, went shopping, & upon returning to my parents house he was still in the same pair of dry boxer briefs.

This kid right here.





True story.

For so, so long... he has only been successful with toileting at school. The carryover at home has been a bunch of... well... the stuff he releases into the toilet.

I feared I would never see the day. And we have had success with both... err... numbers, if you will. But it was always isolated & inconsistent. And never for such a length of time.

There is hope. Real hope. 

---

Tuesday, April 23, 2013

thinking forward with our children

At last year's 13th International FX Conference, hosted by The National Fragile X Foundation (NFXF), there were a series of interviews conducted-- mostly, but not limited to, parents & grandparents. They are part of a Forward Thinking campaign, & the video interviews are being released throughout 2013.

So far 12 of them have been uploaded & are available for public viewing on the NFXF's youtube channel. I wanted to take the opportunity to encourage everyone to watch them. They range in length from about 2 1/2 minutes up to 4 minutes.


Dan's was released yesterday, & I've posted it at the bottom of this blog entry. We were in the conference room together during our interviews so I remembered some of what he said, but it has been a while...

I won't even bother to say that I am so impressed with the way he spoke, because from my perspective it stands to reason... he is speaking about our son... his idol... his reason for living, breathing... & for anyone who knows Hayden... you know the feeling is mutual.

I could say there's an unconditional love between these two but it's more than that. Dan is Hayden's jungle gym, his sensory board, & his best friend.

I have never seen a bond between a father & son such as these two have... even at almost 8 years old Hayden is still ecstatic when he sees Dan pull in the driveway & there is often jumping & screaming involved when his Dad walks in the door. (I bet for most kids this type of enthusiasm tends to taper off sometime past the toddler stage, but not for H-man.)

These are our children.
This is who they are <3 
This is about them.

Each one of these stories is incredibly worthwhile, & I do hope you view each one of them. And share them.

Without further adieu, in order of release, here are the first 12 interviews:

"Everything can be OK... you can find those people, those teachers, that love your children as much as you do. And you can find that doctor that will do anything to help your family to get through this."
-Talitha Humphrey, Mom
Watch Talitha's Story


"My wife is just an amazing person. She has done more, learned more... become such a stronger person being part of the fragile x community."
- Mike Makris, Dad
Watch Mike's Story


"My family means everything. I don't feel like I have a place in this world without them. They are everything, really... the air that I breath... the oxygen... they make my life complete & full."
-Jaime Hudson, Mom
Watch Jaime's Story


"[This experience] really helped me to be more of a compassionate person... It's really interesting how this one situation can change your whole perspective about 'different'."
- Tamaro Hudson, Dad
Watch Tamaro's Story


"When we contacted the National Foundation we felt a lot better after that... I am a Links Leader & I know I can call any other Links Leader & say, 'Hey, you know I have this problem,' & they would be there with me."
-Denise Devine, Mom
Watch Denise's Story

"He has the biggest smile, the best laugh, hugs, kisses... lots of things that he can give us back without ever saying a word. My family means everything... I would always do anything for them. They know that. Everyone knows that."
-Megan Dotson, Mom
Watch Megan's Story


"They are very loving [grand]kids. When they get up in the morning they're just very happy kids & they never wake up in a bad mood. We feel fortunate because we can help them & we do. We assist & help as much as we can which my daughter fully appreciates."
-Mike Simpson, Grandpa
Watch Mike's Story


"I have fragile x syndrome. I have a loving mother... my dad's awesome... my brother is the coolest brother... & they understand who I am. And they help me through difficult times. And they help me with my many victories that I have. Family is there to support you & they support me for who I am, & I support them."
-Dillon Kelley, Self Advocate Extraordinaire
Watch Dillon's Story


"I had often been the person talking to parents about what's going on with their children, so it was the first time I was the parent sitting on the other side of the desk. [But this] has made me change many things in my life for the better. Absolutely. Ultimately I just think you want your children to be happy."
-Kathleen Quinn, Mom
Watch Kathleen's Story


"They want to be loved just like the rest of us. They want to be loved. It's been... it's just great... the amount of support we've gotten from our friends & our family, & from people we don't even know that want to know more about it."
-Rachelle Gatewood, Mom
Watch Rachelle's Story


"My grandson is now 15 years old & he is doing wonderfully. You see hope. And you see a life ahead of him of happiness & fulfillment. The most positive part of my fragile x experience is learning to understand what patience is all about. And understanding how you can work in a positive way with [these] children."
-Penny Paikin, Grandma
Watch Penny's Story


"I think you step back & just appreciate life a lot differently & just appreciate the little things. What I hope for the future for
my son is that he's able to live a happy, productive life, in whatever capacity that means for him. Our son... he's an amazing child... he's very happy... & life does go on."
-Dan Capela, Dad

Watch Dan's Story

---

Saturday, April 20, 2013

necessities, continued.

I do have a toileting update.

But first, I just want to share something. And this is gross. Don't say I didn't warn you.

Earlier today I took a nice leisurely walk around the lake near us. (Well, sort of leisurely... we not only live in the country, but in the mountains in the country, so there are definitely some gigantic hills.)

The perimeter of the lake is approximately two miles, & figuring in the route I chose to get there I'd say I walked a total of three miles. Nothing too ambitious but just enough that it felt productive.


I snapped several pictures along the way... mostly lake views & a few brooks running through the woods. Near a couple of the pictures I took there happened to be these weird squashed things in the road... I didn't take a picture of them because they looked gross, but I was telling Dan about them. The first one I saw I thought looked like a small tomato or some sort of fruit possibly... one with a reddish inside.

They could have come from anywhere, really... been dropped, littered, fallen out of something, etc. But I stopped at the third one I saw to take a closer look, because this one was slightly different in shape. And then I realized why.

Attached to this nasty squashed thing, there was definitely a pair of frogs legs. I was nauseous & cringing (still am), but at the same time at least it made sense. They were probably hopping across the road because the brook runs beneath it, & most likely got run over by a car. (Poor things.)

It's pretty disgusting & sad, but the thing is I was telling Dan I saw them near the corner of Hemlock & Elm. At least I was pretty sure those were the street names, but sometimes I get confused which is which.

Anyway, Hayden happened to be in the room with us but he was watching his iPad & didn't really comment... nothing like, "Eeew, gross! Me hate frogs!" Which is exactly the type of thing he'd say.

He didn't seem to be paying attention at all. He looked sort of mesmerized with whatever was on the screen.

About four hours later I was showing Hayden the pictures I took on my walk today. "This one was Hillcrest," I said... "and this one was Old Creamery, and this one was Hemlock, this one was Elm... well, this was near the corner of Helmock & Elm--"

He interrupted me, "Where you saw frogs?"


Unfreakinbelievable.

---

So, from one pleasantry to the next...

He did pretty well with toileting today. Overall, pretty well. 

Despite the fact that he went through three pairs of pants (I believe the fourth stayed dry), & despite the fact that there were some meltdowns, he was successful on the toilet many times today.

I think overall the main issue was that he didn't want to wear underwear for some reason, so he was mostly commando for the day. After bath we took his iPad away because once again he refused to put underwear on.

I would not have any issue with him wearing pajamas without underwear, if circumstances were different. But for now we need him to understand that the underwear is an absolute must. Once he truly gets the hang of this, then maybe we can work on exceptions.

Finally when he peed on the toilet some time after bath, I was able to get underwear on him at that point. I reminded him he must wear underwear tomorrow as well.
 

There is one other particularly encouraging detail. We took him out to dinner & then went to the park for a little bit. When we got home he did in fact comply with going to the bathroom & he also peed... but equally important, Dan said his pull-up seemed dry.

This may or may not be why he was suddenly ready to leave the park-- that could be a bit of a stretch-- but even if he didn't know for sure that he had to go, he obviously held it until we were home.


I don't know why the carryover from school to home has been so tough. That is a global statement by the way, for everything that has proven to be a tough carryover... medicine included, & the lack thereof certainly not helping any of the aforementioned.

This was not an easy day & it likely sounds much simpler than it actually was. However, so far, it was the most progress we have ever made at home in one day.


Not ready to uncross my fingers, but very proud of him.

---

Update from Monday...

Basically similar to the weekend. He came home from school in underwear again, but it was visible he had a little accident on the way home.

I didn't really react to this & just brought him in the bathroom. He peed but we started all over again with the underwear resistance.

This week is a shorter route home because one of the students will not be on the van, so we are trying the return home in underwear daily.

Not sure what a difference four more days will make, but at least we can say we'll see & we tried. 

---

Friday, April 19, 2013

necessities

So, an on-going issue for us, has been that H tends to leave most of his skills at school as soon as he exits the building. This includes proper toileting.

A couple of days ago at parent-teacher conference, we discussed sending him home in underwear. Friday we decided was a good day to try, because it's a shorter route home with only one other kid.

9:16 AM - an email from H's teacher:
"Would you like to try sending him home in underwear today? I just wanted to make sure this was the plan before we just did it."
10:53 AM - I replied:
"If Hayden seems like he's having a calm day & his toileting pattern is regular/good, then I think it's fine to send him home in his underwear. Hopefully it works & I can get him in the bathroom when he gets home!"

2:54 PM - H's teacher replied:
"Great! Thank you. He had a great day! Going home in underwear! Fingers crossed."

3:07 - a text from H's Aide:
"Hayden just went to the bathroom before he left. Told him he has to use the potty at home when he gets there."

About twenty minutes later the school van was coming up the road.
I prepared myself for the worst.

Just in case he was sitting in a puddle of his own waste, I would say things like, "It's no big deal" or "We have plenty more clothes in your room" or "I was just going to start the washing machine-- perfect timing"

I opened the van door, barely looked at his face, & immediately focused my attention to his jeans.

They were dry.

THEY WERE DRY!

I tried not to overreact with excitement & prompted him to come inside with me to the bathroom. He made comments about the weather & then kept repeating, "patch on"-- as in, the medicine he won't wear at home & wants removed immediately when he walks in the door.(Boxer briefs aren't the only thing we can't get on him outside of school hours.)

I didn't think he was going to follow me to the bathroom because he really wanted me to get the lotion to remove the patch. I promised him I would get it & then bring it in the bathroom. Luckily this worked.

I ran to get the lotion, he waited for me in the bathroom, & as I was on my way back I heard him talking...

He announced that he peed.

I just missed the crowning achievement by mere seconds, but I could see that he did in fact pee. In the toilet.

He did not want to put his underwear back on, but he promised me that he would tomorrow. I am going to hold him to that promise.

Fingers crossed!

--

Monday, April 15, 2013

april 15, 2013

I will remember today.

If you had asked me when I woke this morning, why this day has any significance, I certainly would not have said anything about the deadline for filing taxes.


Because for starters, on a much more pleasant note, my parents are on vacation & celebrating their 40th wedding anniversary today. This is a milestone that might be rare by the time I reach their age, but I enjoyed sharing an old picture of them on facebook today:





Dozens of people clicked "Like"-- both friends & family-- just a nod to wish them well.

It was sweet, but at the same time I have a heavy heart today. It was only one week ago when two of my childhood friends (they are brother & sister) lost their mom.

I had just finished up from my Dr appointment to get my ear checked (if you follow my blog you know why), when shortly after I received the devastating news.

The eulogies which my friend, her brother, & her father gave were among the most beautiful & the most profound I have ever heard.  They spoke of my friend's newborn daughter, the granddaughter which her mom did not have a chance to hold (although thanks to the miracle of modern technology they "met" through skpe). And the words of their father... the words in his love letter to his wife... how she was his heaven on earth.

I was so moved, that the very next morning I sent my dear friend an email (even though I would see her again that very same day). I just figured whenever she sees it, it's fine, but I wanted to let her know that if ever so much beauty could come out of such an awful circumstance... that is exactly what happened the day her mom was laid to rest.

In the email I wrote "every woman on this earth should be so lucky to be loved so deeply, not only by a devoted husband but by such adoring children... & to exit this world so peacefully... as if she orchestrated the timing, so as to not depart until the birth of another beautiful soul emerged... a baby that would not only keep everyone unified, but sustain life in everyone's hearts & minds. Literally & poetically symbolizing a new beginning, right at the time of Spring."

---

This afternoon when I returned home from work, but shortly before Hayden got home from school, I took a walk down to our mailbox. It's located down our street at the bottom of the hill, alongside several other neighbor's mailboxes. It's a short walk but a steep one. I was eating an apple along the way & enjoying the mild, sunny weather.

I had no idea that simultaneously, there was breaking news all over the major networks about two bombs going off near the finish line of the Boston marathon.

So if I may freeze that thought for a second & put it aside...

As I approached our mailbox I did remember that something I have been really, really looking forward to... waiting & waiting for since last year... was finally due to arrive between today & Wednesday.

I was suddenly a bit more anxious to see what was inside. There it was... a cardboard envelope with the Amazon logo printed along the trim. I shoved my half-eaten apple in between the rest of the mail, tucked it under my arm, & began to open the sturdy envelope.



Yes, this is what was inside. It's a documentary we were fortunate enough to see a screening of, at the 13th International Fragile X Conference last July, in Miami, Florida.

The film is about three siblings... two of them trying to fulfill their brother's dream to meet his hero: Lars Ulrich of Metallica. Their brother's name is Tom Spicer & he has Fragile X Syndrome.

I am beyond grateful that Tom's brother & sister, William & Kate (oh gosh, that's the first time I noticed that), actually pursued this & also filmed their journey. There is so much I want to say about it, that I barely know where to begin. Too much, really, so I will just summarize by saying that the bonus features are just as worthy of watching as the documentary itself.

At the Conference, these bonus features were of course not part of the screening so I was particularly anxious to see them. But every little thing about this entire film is phenomenal. From the Sunday Times interview with Tom, from May of 2012... to the deleted scenes... & a special January 2013 interview... plus everything in between.

And the subtle similarities, so subtle, within things that Tom does or says which make me think of Hayden. For example, how he calls the road trip with his brother & sister "boring". When he's having eggs for breakfast. How he's automatically settled when he has a job... a purpose. Sometimes the way Tom answers questions also reminds me of Hayden. Or when he is being funny, & when he is not.

I think I was most impressed with the way Tom handles himself in situations which I'm certain would have caused Hayden to spiral. Even the scene when they don't have enough quarters for laundry-- especially while his sister had to go off to the Metallica concert without him.

I may have been most excited over the appearances by the infamous Drs. Paul & Randi Hagerman. Their cameos give me goosebumps. I can too easily recall the mountains of anxiety when we had our trip to the MIND Institute a couple of years ago. But also the incredible, yet too brief, meeting we had with Dr. Hagerman on our final day there. I think of when we saw her last year at the conference in Miami, & how I wish I could take her home with us.

The level of awareness this film raises... & what this means for the community of people affected by fragile x syndrome... when I think of these things I am simply in awe.


This has not yet released in America (the Spicer family is from England), but I attempted to pre-order it via amazon.uk even though I had no idea if it would go through.


But when I actually got a confirmation email right near the beginning of April, stating that my order had dispatched, I thought it would somehow never arrive. Or it would arrive but it would never play... or something... because of the format. I had no idea.

Interestingly, the first thing I tried to view it on was our old DVD player in the family room. It would not even read the disc. With my heart beating very fast I anxiously tried to view the disc on my computer & nearly quivered from relief when it worked. Then for the sake of comparison, I also tried it on a newer DVD player in the other room... it was able to be viewed on there, too.

I was so so SO anxious to make some noise about this via social media... send a mass email to all of our family & friends... etc. I started the chain of communication by sharing the above pic on facebook.

It was also then that I realized what was happening in Boston. So yes, I will remember today.

My heart goes out to every single resident, & visitor, in the entire city.


And when the time is right, I hope one day others have the opportunity to experience this journey to Lars.

It just might be the encouragement we all need in this world.


---

Saturday, April 6, 2013

hear ya later

Sometimes when fragile x is trying to tell us something, we listen. Other times we hope for the best, put our hand up, & say hear ya later.

I do not always keep score but yesterday would be 1:0, with team X unfortunately in the lead.

Friday morning I happened to leave the house without any jewelry on, but I was wearing a hospital bracelet when I came home. My discharge papers indicate "Left Ear Injury".

Right now it's about 24 hours removed from the incident & I'm not quite sure how to talk about this one.

My primary reason for beginning this blog was to raise awareness. But another reason was more personal, in order to track Hayden's behavioral trends... before, during, & (if necessary) after medication.

When I was younger I kept journals, wrote poetry, created short stories, drew pictures, painted... these were among my most reliable "therapeutic" outlets if you will.

Yesterday's incident is not something I care to draw or put into a poem, but I can in fact paint a picture through my words. I wondered if I could do so using some sort of comic relief... I know when I am in the appropriate mindset, I am pretty good at that.

So I tried... I was thinking about a book that nearly anyone in the corporate universe has probably heard of. It's called A Whack on the Side of the Head, written by Dr. Roger von Oech. Although this author has nothing to do with anything directly related to people with special needs, I was thinking about this book because of its silly title. Maybe I could say yesterday was like A Whack on the Side of the Head & it's lesser-known sequel Hear Ya Later-- the latter of which is as truthful to the literary world, as unicorns are to the forest.

I would be the author of said imaginary sequel, but the meaning of its title is unfortunately not imaginary at all.

This is as far as I got, because after a few minutes the concept just wasn't very funny anymore.


I know we're supposed to learn from our mistakes, but in more ways than one I will not listen to that reason. Friday, as in yesterday, was the very last day during Spring Recess which I needed to bring H to work with me.

If you are among the people who read my atypical blog entry, then you might be shaking your head.

But for two days & at least three nights (depends how you look at it), Hayden was really great. He seemed back to his usual self. He had sleepovers at both grandparents homes, two nights in a row, with excellent reports & he came home happy. Friday morning was the same. Aside from coughing due to a mild head cold, the kid who woke up in Hayden's room was the sweet one we are accustomed to seeing.

He was happy to stop by my office that day. He was excited over the plan to go to DD after. He didn't even pick out any DVDs when we left the house, & didn't attempt to hoard half of his cars with us. He just grabbed his iPad, his hat, & was ready to go.

We have two walkways in front of our house & one of them goes to the street & the other to the driveway. Sometimes he likes to stand at the one that goes to the street, so I pick him up curbside. Friday morning when we left the house, we played our chauffeur game.

Everything was fine until we got out of the elevator & I couldn't get him to enter the office with me. Hayden tends to follow the person he is with, especially if they're acting like they don't mind whether or not he is following. So I tried to pretend like we weren't following the leader, & I went in the office & put my bag down. I peeked around the wall to see if he was coming & sure enough I saw him approach the glass doors. I stepped back so he wouldn't notice me.

Suddenly things got a little bit too quiet. I looked around the bend but he was gone.

I ran to the elevators & pushed the down button (thank goodness it's the only option). The one on the left opened & Hayden was standing there completely stone-faced.

I pulled him out & said we were leaving. I instructed him to come with me to get my bag. (However, long story short, a coworker ended up having to get it for me.)

Once outside, it was deja vous. He ran, I ran after him, I picked him up, he kicked, thrashed, screamed, cried, & I carried him back to the truck. We were still struggling as I was trying to get him to sit & the last thing I remember is seeing his right arm raise up.

Before I could react his hand came down on the left side of my head with such deliberate force that I would have thought it was only a bad dream... except the sudden, unbearable piercing inside my ear drum was so overpowering... the ringing so loud... stinging me from the inside out... that it could not be imagined.

Unable to buckle him in, I shut the car door. At this point I could not have cared less what the hell was going on in the backseat as long as he was confined to it. I stumbled around the vehicle to get in the driver's seat & that's probably when the panic set in.

I knew I needed to go to the hospital but I couldn't do that with him, by myself.

I still don't understand how this happened considering the driving distance between me, them, & the hospital, but somehow within about an hour & a half I was in the ER with two parental "emergency responders", one now-calm kid, & a completely deaf ear.

Approximately four hours later following a nurse exam, a doctor exam, & a CAT scan, I was told to make an appointment with an ENT (Ear, Nose, Throat Specialist) next week & then follow up with an Audiologist.

The CAT scan did not reveal anything so I was told the ear drum is likely ruptured but it's too small of a perforation for them to see. There is however visible swelling, which is no doubt contributing to the hearing loss.

My left ear is expected to regain function within a few days.

My heart, however, feels indefinitely bruised.

---

Thursday, April 4, 2013

for all of the JCs out there

"The Elusive X-Factor"
by Patricia J. Heavren

The Elusive X-Factor of JC

A unique & unforgettable perspective.

(I got about two-thirds of the way through & then completely lost it.)

---

Tuesday, April 2, 2013

atypical

Sometimes I wonder about the different circumstances which would tire a typical mom like me. One who, on paper, leads a comparable life & orchestrates a comparable schedule.

I imagine her being a working mother of one-- a son of course. Not a job which requires any travel... being married... maintaining upkeep of a similar home (at least a reasonable, minimal expected amount)... & having comparable resources available to her. By resources I mean everything from support, to money, to respite.


On paper, side-by-side... very similar. Perhaps even in the same respect as the attention she gives herself (or lack thereof).

Then I think about the things that tend to make me feel drained.
If for example, one morning your child decides they don't want to get on the school van. Nothing out of the ordinary that morning, no change in routine, no visible antecedent. But your son decides he does not want to sit, he does not want to be buckled in, & the real kicker: he also does not want to get out of the van.

But one of the above needs to happen or you will be late for work. And of course, he will be late for school. And if he's late, then when he does finally arrive at school, his routine will inevitably be slightly different. And this will set in a motion a completely off-balance day for him.

After at least 10 minutes of trying to keep your cool while your son kicks & shoves you, as you try to help him, & then not try to help him (in case he wants to do it himself), & then a few failed attempts of trying to engage the van driver... you realize this has gone on 9 minutes too long.

You remove his backpack from the van, & place it on your front walkway so you will have both hands & both arms free. You will need all of them.

You simultaneously curl one arm between his legs & the other around his torso. You drag him out like a ring fighter about to body-slam their opponent, except this is not your opponent. This is your son, the love of your life, your flesh & blood (& let's not forget genes), thrashing about & screaming & crying because he knows this is not what's supposed to happen. And worse, as much as he doesn't want this to happen he can not organize himself to the contrary.

And apparently, neither can you.

Fast-forward to the following day & imagine (again, for example) that you need to bring your child to work with you. Out of necessity, desperation, or a bit of both (pick one)... you have to get to the office for at least a couple of hours. With son in tow... because school is closed. 

He has been there before, at your office. He's sometimes hyper & his compliance is hit or miss... but usually with the right snacks & DVD playing in the computer the situation is manageable. He will still get up a million times & touch a million things, but for the most part you can get by for a little while. He knows his spot. He goes right to it: the empty desk behind you.

But as soon as he opens a desk drawer that had keys in it the last time, & today they're not there... you realize that today's length of compliance will be nearly non-existent. You also try to find the keys but you're certain you won't... because the keys are wherever the last person who had them, put them. And that person can't find them either.

Well with that, he's off. Thankfully, your very small office is virtually empty that day (partially) because it's Friday. At least one person is working remotely, or another is on vacation, or this one is sick, or that one is at the client... so on, & so forth. So as your child parades around with the gracefulness & speed of some sort of an orangutan-puppy hybrid, sloppily knocking things about but never once losing his balance, you make the mistake of thinking he's distracted enough that you can safely send something to the printer. Which, incidentally, is also a copier & your hybrid son also has an elephant memory. 

As your luck would have it before the machine can even output the first two pages, he has smelled his bacon. "COPIES!" he yells. The stack of blue bins which he was just constructing into some sort of recycling center, falls to the ground. He grabs the closest binder from on top of a filing cabinet & begins to tear out its pages & place them in the paper tray. You beg him to please leave it alone but you might as well be telling a teething baby to take a plastic chewy ring out of their mouth. So, having little choice, you turn off the copier machine & unplug it from the wall.

Without going into detail of what the rest of your visit was like, that Monday you're once again forced into a repeat-attempt of bringing your child to work. Duplicating Friday's luck, the lack of office attendance is possibly the only factor in your favor.

On this day your child remembers there's a manual sweeper in the corner, behind his friend, the copier. He grabs it & begins pushing it back & forth, & in every which direction with so much gusto that the handle comes off. Before you can react he lifts the rod high above his head & forcefully whacks it against a filing cabinet.

With an enormously loud clang the handle splits. With one piece still in his grasp, both of you fall silent following the hurled piece with your eyes until it lands a few feet from you... somehow miraculously missing every glass partition & light fixture in the immediate area.

The child smiles & thrusts his head back in a fit of laughter. A few seconds pass before you realize you're shaking, & you choke back your tears while you survey whatever else was left in his wrath. You start from the back of the office & work your way forward, retrieving semi-torn air cushions used for packing & shipping, a long trail of rubber bands, various pieces of blank paper-- some of them sloppily stapled together, many crumpled wads of clear tape, several empty dispensers, some envelopes, a few hole punchers, & a couple of industry magazines & office supply catalogs scattered about.

Next, you return all of the waste buckets & recycle bins to their appropriate cubicles & offices. Then you gather all of his things from "his" desk & shove them into the backpack... with much less care than how they arrived. Lastly, you ask him to put his jacket on. You're not sure whether or not he complies but it gets picked up & is somehow accounted for.

You manage to lead him out of the office space, but you remain on the other side of the glass door to set the alarm. When the door closes behind you, you fumble for the key to lock the bolt. Then you remember you left his iPad inside.

From the time the alarm is set, you have 30 seconds to close & lock that door before it goes off & the police are alerted. Meanwhile, you hear your son excitedly yell your name & something about the elevator so all you can do is scream back, "WAIT!", as you race against the timer to go back in the office & retrieve the stranded tablet.

Amongst all the commotion you're convinced the beeping intervals sound different, so you go to the keypad to stop the alarm & start all over again. Both elevators are dinging repeatedly & the child-like monkey is lunging back & forth between the two doors yelling your name amongst various other, more colorful words. You quickly pat yourself down to check for your car keys, cell phone, & other essentials & then grab your child by the back of his jacket & direct him away from the elevators. 

Your bladder suddenly reminds you, if you don't stop in the restroom you will undoubtedly have an accident on the way home. So you drag your son in there with you. You manage to relieve yourself faster than should be scientifically possible, & when you meet him at the sinks he looks like he just came out of the bath. Sopping wet from the elbows down, you carefully remove his shirt & instruct him to pull his undershirt down & leave it on. You pull his jacket over his clammy arms & zip it up. 

When you exit the restroom, luckily the stairwell door is almost immediately opposite. His hyper voice & deliberately-stomping footsteps echo all the way down to the first floor.

Once outside he scurries down the handicap ramp & then heads off in the complete opposite direction of your vehicle, which is literally only a few yards away. "Have fun, Mom!" he yells.

It is then that you realize you never shut the lights when you locked up the office.

---
I went to work by myself today. I mean, there were other coworkers back in the office but I didn't have my guest with me. During just a few short hours of uninterrupted focus, I not only finished everything from the last two days but re-checked what work I did get done just to make sure, & also plowed through whatever was new on my list for today.

Tuesday is currently one of the weekdays which my schedule is altered to accommodate Hayden, so I will go in for a certain amount of time & then log back on from home. And today, following my uninterrupted work, before I knew it it was about that time. I gathered my things to leave.

My boss had just returned from a late lunch & on my way out, I stopped by her office to ask her about something. My mind went blank for a second as I approached her doorway & spotted something dangling from the doorknob.

It was a long, dirty piece of tape with food crumbs stuck to the back of it & Hayden "written" all over it. I felt my face turn maroon, pulled the nasty strip from the doorknob, & shoved it in my jacket pocket.

---
During school hours, Hayden is on medicine. Due to logistics I don't even feel like getting into, a transdermal dose is the only form that has proven to be successful. So he wears a small patch on his back... which he anxiously reminds us to remove as soon as he gets home each day, but he tolerates it while he's at school.

It helps. Quite a bit.

We also have a special adhesive film which can be applied right over the patch, because initially he would contort himself & pick & pick & pick at it until he got the patch off.

This film makes that nearly impossible. As a matter of fact, I didn't even like using it because even during his bath I found it tough to remove. I believe it's designed & meant to cover dressings which need to be protected from water for days at a time.

Since Thursday, there has been zero medicine in him following at least two failed attempts to get that patch on. I tried myself, before work, Friday morning. I caught him off guard, told him I was just pulling his pants up in the back, & then quickly stuck the patch WITH FILM to his back.

Before we even left for the office he had gotten it off. I was sure that was an isolated incident & there is just no way he would have the fine motor control to ever do that again. I was sure I just must have placed it too low, & too easy in his reach.

So over the weekend we tried again. Hayden knew it was coming this time, so he was fighting me, but with Dan's help I was able to place it higher up on his back.

Later that morning we discovered Hayden had in fact, again, managed to remove it.

---
Yes I sometimes
wonder about the different circumstances which would mentally drain, & physically tire, another mom like me... A wife... A mother of one.

But yesterday afternoon I wondered if their breaking point would be sooner than mine. We were at home, it was hours since we returned from my office, & I was on my hands & knees cleaning up from Hayden's most recent meltdown... when I started to sob.

I couldn't even think anymore. I wanted to erase this visual chaos around me, I wanted my headache to go away, I wanted everything to be typical. Ordinary. Even boring. I didn't care. I just didn't want to feel what finally overcame me in that moment: sheer exhaustion.

The fact is, if you were to ask Hayden about the last few days he'd tell you that we went to my work, went to the bank, went to Shoprite, got two cars, saw the Easter bunny, got a doughnut, went to the diner with Dad, rode his buggie around outside, went to Aunt Dana's house for Easter, talked to Pop Z on the phone, had a mommy-&-Hayden day, had a daddy-&-Hayden day... & he would tell you all the things he did, not necessarily in the correct order, & not necessarily all-inclusive, but he certainly wouldn't say that his mom was crying.

I guess that's the reason why I was able to get out of bed today; Cook his breakfast, shower, get dressed, wear blue in support of World Autism Day, & even accessorize with a scarf & earrings; Go to work; Be productive.

Almost like everything is typical.

---

Aprilism

If you haven't noticed the media presence: April is Autism Awareness Month. Today, April 2nd, is the sixth annual World Autism Awareness Day.

You can visit Autism Speaks online, & learn about their efforts to help shine a light on autism:

Light it up BLUE


You should also know...
The two largest foundations which support the community of people affected by fragile x, are the FRAXA Research Foundation & The National Fragile X Foundation(NFXF).

You're probably wondering why I threw that in there.

Well, right on FRAXA's homepage (FRAXA.org) you will see a statement which deserves equal awareness. But I can spell-it-out (in blue) so you don't even have to click on that link:

Fragile X is the most common known cause of autism.


Here is a helpful section via the NFXF site, which further explains the link between fx & autism

Did you know that right now there is ground-breaking genetic research giving hope for potential treatment of autism's core symptoms?

You can put your science cap on, & read about some of the research here:
researchers reverse fxs symptoms / promising autism treatment


Yes, April is Autism Awareness Month. But I just thought you should also be aware of a much lesser-known condition.

Please pass it on.


And wear blue today. Wear blue all month if you wish. But please tell people why you're wearing blue.

Thank you


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