Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Tuesday, July 1, 2014

thought you should know

Some time near the age of 5, one day, Hayden was walking around with his "bucks"-- (totally normal, he is always hitting people up for cash--) & at one point he kept saying that he needed two.

I knew he already had $5 in singles, & he sure did not need to run around with $7, so I was not exactly responsive to his request for more.


However, he was certainly persistent & gradually became more determined (to put it kindly)... "need koo!," he kept saying. (The "t" sound came out like a "k" sound.)

Finally I looked at the cash he was holding & sure enough he only had $3... hence the reason why he was looking for "koo" more... which got lost who-knows-where.

But the point is, this is how I learned that he does have the ability to count.

I may have already mentioned that story in a blog post somewhere along the way over the years... but any time I am offering an example of how people with fragile x syndrome (my son included) sort of mask their own knowledge... how they are as much incidental learners as they are incidental "revealers", if you will... the scenario with the $5 is usually my go-to story.

Hayden is also a visual learner & a sight-reader, so he knows what his written name looks like & can identify it. He has a pretty impressive "sight word" vocabulary... but he does not yet read in the traditional sense of sounding a word out.

Although, this has been a strength of his for a long time. Even before Hayden had expressive language, I remember his former teacher telling us that he could pair up a classmate's written name with their corresponding class chore-- both simply spelled-out on labels which went on the class job chart.

That was a pretty huge accomplishment.

The other popular perspective I offer is something that happened when he was also kindergarten-age (that was a truly breakthrough period of time-- with speech, too)...

You see, someone who used to work with Hayden (not for very long) once said, "I don't think he's getting anything out of it"... referring to his learning environment at the time. And this person offered an example of the section they had been doing about the weather... that's how they started each day... talking about the temperature, the sky, etc...

But the "educator" seemed solely focused on Hayden not staying seated... & Hayden having been fidgety... & Hayden doing this... & Hayden doing that... but one thing he would not do, was pay attention. That's what this person told us.

Ultimately, however, their "complaining" only offered me clarity. I suddenly understood why Hayden recently began talking about the weather so much at home-- seemingly out of nowhere. Now I knew the source of his new interest. And I'll never forget when I looked at this person & proudly said, "Oh, that's funny-- that explains why Hayden has been bringing up the weather when he looks out the window in the morning! He never used to do that!"

I didn't get a response. But this is how I learned for sure, that Hayden is truly paying attention even when he does not seem to be. 

 
--


Well tonight I just witnessed my third go-to story, & I think it tops the first two...


Hayden was playing waiter earlier this evening-- a frequent favorite-- & he was pretending to take my order. (I think he just really wanted a doughnut so I'll admit that asking me if I wanted iced coffee was a clever conversation starter.)

He said, "decaf?" And I said, "yes." And then he said, "spenda"? And I said, "yes, Splenda."

He had a little piece of paper & a pen & he was pretending to scribble a list. And then he said, "How you say your name, Mom?"

And I said, "What?" (He meant spell...)

And he said, "C - r - a ..." & then paused as if waiting for me to finish.

I called out to Dan & told him what just happened. With that, one of us looked at Hayden & asked him how to spell my name (I don't remember who), & again Hayden said, "C - r - a"... possibly even twice...

So then Dan said, "How do you spell my name?"

I wondered if Hayden would repeat the "C - r - a", or, call out any number of random letters.

But that's not what happened.

Instead, Hayden answered, "Dad!"-- as in the name, not the letters.


The truth is I am often spelling my name on the phone. It's the same thing every time... "Cara... with a C... C - a - r - a... Capela... one p and one 1..."

Dan is sometimes misunderstood for "Stan", but he can say "Daniel" & then it's understood that he is saying "Dan". My name, however, is often misunderstood for countless other names... & even when people do get the "Cara" part right, they'll still ask, "K - a - r - a?"

If I think about how many times I have spelled out my name over the course of Hayden's life, when he was within earshot... I can't even begin to estimate a number.


So, yeah... Hayden can count.
He is a visual learner.
He is an incidental learner.
He is always listening.
He is retaining the information he "incidentally" sees or hears...


He is Hayden. And he has fragile X syndrome. And he is a great learner.

--
July is Fragile X Awareness Month! And all month long, we're gonna
 Let 'Em Know
--

Thursday, June 26, 2014

sonshine

This is a long-ish one... with a lot of links... but I've fallen behind on posting Hayden-specific updates...

Aside from a recent brag post for a dear friend & her courageous, incredible book
... it seems several of my updates have been of a more serious tone lately ... the most recent is a completely sarcastic segue into a lovely complaint altogether.

Therefore, today I am sharing a long overdue breath of positive fresh air... for the most part... (doesn't that count?) :)

Last weekend we celebrated H's 9th Birthday-- I purposely kept the guest list small because I knew we would be having it at the house. Of course with all of the repairs to our home which kept getting delayed, one might think why would I do that... but it's because of those repairs that it also wasn't the best time to host his birthday elsewhere, which would cost even more money.

So in case of unfinished repairs and/or bad weather, I needed to make sure we could accommodate everyone. Hence the small guest list... which I actually still feel bad about, because Hayden is so social we only want to encourage that. Not to mention his birthday last year had a hint of a melancholy (if you will), having been right after the time of my grandmother's passing... & this year his birthday was right on the heels of something else going on with one of my nieces, which has had everyone in quite a bit of a difficult state of mind. 

I only wanted to make the day as happy & awesome as I could. His week had been busy but a good-busy... the kids had Field Day, plus two class parties, & they also had a class trip to the zoo. Although Hayden didn't quite interact as much as I had hoped with his peers, his distractions were sweet nonetheless... mainly his new sitter who joined the trip for the day (so of course he wanted to be with her, but that's a good thing), & he was equally determined to remain near another little boy in his special ed class who was having a tough time. Hayden paid little attention to the animals but he LOVED the sprinklers & he LOVED the train ride (I'll refrain from recapping the awful meltdown on the long line beforehand).

At the end of the day though, he even picked out something from the gift shop which was not a car!


Sunday, the day of his birthday, things were going well so that was good-- mother nature was definitely on our side & my dad even figured out a temporary fix for the net on the trampoline. (Of course the new net should have arrived in time, but instead it was the day after the party.) We kept the menu simple--  burgers, veggie burgers, hot dogs, chicken, corn, watermelon, blueberries, & a couple of salads.

Hayden had a lot of fun-- he doesn't stop sometimes unfortunately, even when he truly needs a break-- but it didn't really catch up with him until the last hour or so. I've always said it's as if he simply can not accept his own state of tired sometimes. This can lead to a very loud, angry Hayden & a version of himself who could not be further from his true self... & one that I hate for other children to witness. So I basically said it was cake time & then shortly after began handing out goody bags to try & wrap things up.

Party aside, I must say though, I really can not believe that I have already been a Mom for nine years. Sometimes it honestly feels like we're just getting started.

This year has been a lot of trial & error for Hayden's treatment plan-- this holds true for recent years in general, but particularly this year because we were so close. At our final progress meeting of the school year, I collected input from 2 teachers & 3 therapists.

One of the global challenges reported is that Hayden's difficult behaviors are more inconsistent & more sudden, & seem to have fewer identifying antecedents. About once every 2 to 3 weeks he will experience a truly bad day all around... doesn't sound like much... but that is excluding days where things might be tough here & there.
I guess to be expected...
I also asked the dreaded question of how these behaviors are impacting him socially-- & obviously this answer is not great but it could be a lot worse: they basically summed it up by saying that it's not so much what other kids think of Hayden, as much as it is his ability to interact back. Which can ultimately affect the aforementioned, & is inexplicably frustrating because we know he can when he's in his regular state-of-mind.

So then when we got into more specifics about his learning, I asked how he was doing when his difficulty in regulating behaviors is not getting in the way...

And they said his fine motor is better... he will often do tasks for longer periods of time (when he is able to apply himself)... he has better articulation... & he is even listening quietly for longer periods of time, when the lessons are being taught from a text book (vs hands on).

...quite awesome...

They also said that if he's absent from science, for example (one of the classes where he is with his mainstream peers), that the kids will ask where he is. They said he is generally perceived as a joyful kid & he's well-liked.

But the thing I am most proud of, because we waited years to hear that voice of his... & to learn what his many thoughts are (because it was clear there were many running through his mind)... would be his consistent improvement in expressive language.

The speech therapist-- who also bought & read that book I mentioned-- said, "Hayden is my kid that I am most proud of." She is one of the few who have been working with him since he stepped foot in that school back in 2008... & she knew him before he could barely even babble... & she has witnessed right alongside us, his phenomenal language progression.

She recently applied for the Principal position, too. I didn't realize she was applying, & it sort of sucks that she didn't get the job (but it was a pretty sought-after spot, so I get it). But the day that she had an interview with the Board, she asked if she could share a couple of letters I had written to her over the years. I was so ecstatic that I think my reply sounded like a goofy teenager but it was truly an honor.

As the school year officially came to a close, Hayden's special ed teacher sent home a framed picture of him... I remember when the photo was taken, it was the day he returned to school after the dentist ... & he was doing so well they thought something from his appointment hadn't worn off yet :) when it reality there was nothing to wear off... (who knows what his surprisingly amazing disposition was all about that afternoon... maybe being done with the dentist?)...

But sensing the gift was something breakable I carefully removed the tissue paper labeled "Mom & Dad", & then saw our present:




The frame is certainly a great accessory to that big, cheesy grin. Isn't it?

Summer school starts on Monday & I'm sure I'll have plenty of new stuff to vent about, but for now... a little bit of sonshine. (I should paint over the "u", huh?)

--

Tuesday, June 24, 2014

summaAARGH

How psyched is everyone that summer has finally arrived! RIGHT? WOO HOO!

We've kicked that Polar Vortex to the curb, swapped our boots for sandals, & reached for the sunglasses... 


Kids are happily following in their parent's lead, as they skipped through their final days of school... 

--

Well, not in my world.

For starters, Hayden attends a much-needed summer school program called ESY (Extended School Year). But (a) it's only a couple hours in the morning, (b) the staff is different than the people who work with him during the regular school year, (c) there are far fewer kids (as most students do not need ESY), & last but not least... (d) it's summer school. BLAH.

Basically what this boils down to is an interruption in our day. We rush out the door & a few hours later he's home-- even earlier than a typical half day or early dismissal day.

By about 1pm he will have eaten breakfast, gone to school, come home from school, eaten lunch, & is ready to be entertained for the next 7 hours.


We enlist the help of a sitter until I can get home from work, but I am still on-the-clock when I return. This is hardly the perfect recipe for providing my child all of the attention & fulfillment he needs & deserves. Furthermore, most days of the week we lack a Plan B.

But if you think that sounds fantastic, wait until I tell you what happens after six weeks... no more summer school. So, we bribe the sitter for even more hours to cover even larger gaps of time.

Over the years, as Hayden has aged in & out of various programs-- all the while surrounding his ESY schedule-- Hayden's summers have included: home services for therapy, daycare, a few weeks of camp (which he attended with his sitter as his "Shadow Counselor"), or, services through a local special needs agency... to name a few.

Each option had its own issues, if you will, where certain aspects were great & certain things were not working for him (or us).

Nothing was just right.

Yes this summer there may be moments of picture-worthy joy, or carefree glimpses on lemonade days, with my sun-kissed kid frolicking around near the water's edge, waving a theoretic roasted marshmallow on a stick, while his father is relaxing nearby in an Adirondack chair... but Hayden truthfully only drinks water & is not likely to roast a marshmallow-- much less eat one-- & we're really not down by the lake much because during the week it's too difficult with our work schedules, & the weekends are usually busy with other family stuff.


Quite honestly, with the reduced school schedule & loose daily structure, summer's for us are kind of stressful. When that final school bell rings... it's as if I can hear it in my head... with a creepy inner voice... have fun for the next couple of months!

Maybe I should start counting how many times I am scared half to death by some nasty bug I find in our house.
Yeah.

How psyched AM I that summer has finally arrived! RIGHT?!

--
If you see a bumper sticker that says, "I'd rather be fighting over homework, air-drying cable knit sweaters, or cleaning snow off my car" ... then send me one.

--

Sunday, May 25, 2014

"Becoming Mrs. Rogers" Blog Tour


In case you have not already heard... Cindi Rogers' first book Becoming Mrs. Rogers is now available on Amazon.com !

I am proudly participating in the Blog Tour for her book, so here is some promo content which was provided to me to share...

The book was a labor of love for Cindi, as well as her husband, Chris. "The process has been a wonderful learning experience & will continue to be, moving forward," -Cindi Rogers

This book is a memoir about becoming parents, starting a family, & raising two sons with a diagnosis of fragile X syndrome. The timeline travels from birth to present day & covers different issues such as school, behavior, therapies, & day-to-day life. The book will take you through some downs but also some ups, only to come out with moments of joy & hope.

"It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too."
-Cindi Rogers


The Rogers Family hopes you will consider sharing this with others who also might benefit from such a story.
And they would like to say, Welcome to the Fragile X Neighborhood!


I gave her book my own 5-star review & I'm confident you will, too!


**A portion of the proceeds from this book are being donated to the Rogers Neighborhood FX Family Fund. This Fund offers scholarships to assist families in attending the NFXF (bi-yearly) International FX Conferences.**


Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs & lows entwined with its wisdom & compassion, has been a beacon of hope for thousands of families struggling with fragile X & other autism spectrum disorders.


Fragile X is the most common inherited form of intellectual impairment & the number one known genetic link to autism. The symptoms associated with fragile x affect a child's entire world, including social & behavioral challenges as well as cognition & speech. Rogers not only tells her story but also gives advice for new parents, sharing facts about:


* the physical and behavioral characteristics of Fragile X

* the effects of Fragile X on learning, functioning, & daily activities

* medication & therapy


* how fragile X affects the family

Cindi Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy & independent as they can possibly be. It is a story of challenges, tears, joy & hope.


Cindi is the mother of two sons, ages 23 & 25, who are affected with fragile X syndrome & autism. Since receiving this diagnosis, Cindi has become a leader & symbol of hope within the fragile X community. Her positivity, creativity, & defining can-do attitude have inspired families & professionals worldwide. Cindi & her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives.

Today, Cindi serves on the Board of Directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives & works with her husband and two sons in Littleton, Colorado. Together they love traveling the U.S. in their RV named Rocket.


"I met this handsome guy in Mrs. Johnson's 7th grade French class. He courted me for 8 years and then we married. I'm pleased to say that through tears, joy and challenges we have endured 29 years of marriage. It hasn't always been 'peaches & cream', but we've emerged as a strong, loving couple. I wouldn't have shared this fragile X journey with anyone else." -Cindi Rogers

Please enjoy being Cindi's neighbor on their journey...

Order your copy today!
--


Sunday, May 18, 2014

otherwise okay

This weekend did not go as planned.

Friday was Dan's birthday, & since Thursday night we would celebrate with his family, we planned for the 3 of us to do something together on the day of.

This weekend would also be my grandmother's unveiling, on Sunday. The unveiling is a Jewish custom "to show honor toward the deceased & reflect the teaching that all are equal in death" (according to MyJewishLearning.com). It is basically a graveside service to unveil the headstone. The grave marker, or monument, serves to honor the memory of the deceased & identify a place of burial-- that part is familiar for many. But according to Jewish law it is customary for the grave marker to be put in place & for an unveiling ceremony to be held within, & no later than, one year after the passing. Many families will wait until almost the full year has passed to do the unveiling, but it may be done sooner. The unveiling ceremony may consist of Psalms, a brief eulogy, removing the cloth covering of the headstone, & the Mourner's Kaddish (prayer in praise of God recited by mourners).

For me, the unveiling is more equivalent to paying final respects. It's a different step in the mourning process but it's also more closure. It's a chance to leave a stone.

I researched common explanations of this stone-placing tradition & it's part custom, part superstition, but regardless... there is a customary Jewish belief that stones "keep the soul down" (if you will). Rooted in the Talmud, the belief suggests that souls continue to dwell for a while in the graves in which they are placed. The grave is the permanent home to retain some aspect of the departed soul, so therefore stones are more than a marker of one's visit-- they symbolize the permanence of memory.

Again, according to MyJewishLearning.com, all explanations have one thing in common: the sense of solidity that stones give. I prefer the below paraphrase when comparing to the better known (non-Jewish) custom, of graveside flowers:

"Flowers are a good metaphor for life. Life withers; it fades like a flower. But the memory is supposed to be lasting. While flowers may be a good metaphor for the brevity of life, stones seem better suited to the permanence of memory. Stones do not die. When we place stones on the grave among all the souls whom God has to watch over, we wish to add the name-- the 'pebble'-- of the soul of our departed."

So at the unveiling I would have the opportunity to leave stones today-- one for GG & one for Poppy (H's special genetic link, & incidentally, he is & will be the only great grandchild with that uniqueness).

I sort of daydreamed that Hayden, very calmly & in a very grownup way, would place his own stone just as the rest of us.

--
So the original plan was on Saturday, with all of the family having traveled to New Jersey, we would get together at some point. This way the visit was not just limited to the unveiling & then a get-together at my parent's house afterwards. Especially with Flora & Gabriele only being there for the latter.

Well before the weekend even arrived, I learned that one of my mom's sister's was not going to make it to New Jersey at all, after ending up in the hospital due to severe pain from sciatica. Her other sister's flight was canceled-- but she was still expected to get here, albeit a day later than planned. I don't believe my Uncle had any travel issues per se, but I know one of my cousins had a major delay returning to the States. 


So, let's backtrack to Friday night-- Dan's birthday.

We (the 3 Capelas) learned of all the family travel hiccups, hoped for the best, & went ahead with our evening plans. It was raining quite heavily. We decided on a nearby familiar restaurant that has a particular dish Dan really enjoys. Hayden seemed to be in a pretty good mood, & off we went.

Everything was okay at first, but it soon became evident that Hayden was not going to eat his food. The food was not the issue-- he just seemed very anxious all of a sudden, & sort of uncomfortable. He began perseverating about leaving, & that was the beginning of the end. Overall he tends to do well in restaurants so this was just, for whatever reason, a sort of fluke thing I guess.

I tried bringing H to the bathroom thinking maybe his stomach was bothering him or something, but that wasn't it either. If I had to guesstimate, I would say we were physically in the restaurant for a whopping 45 minutes-- maybe 10 of which were fun.

Nighttime routine did not go so well either. He was refusing to clean up his toys & when it was time for lights-out, he would not stay in his room. Dan & I had originally planned to watch a Netflix movie together but that never happened. By the time Hayden was finally settled, we were too exhausted.

Saturday was a beautiful day. Aside from waking up to a bit of a toy mess in the living room which was still there from the night before, it was sunny out & the rain had stopped. It was slightly chillier than normal for this time of year, but the sky was clear & it looked like Spring should look.


It turns out that Dan's nephew & godson both had lacrosse games on the same fields on the same day. So the plan was that Dan would bring Hayden there, my Dad would meet them, & I would sneak in a couple of errands including grocery shopping while I could. Unfortunately our nephew ended up not feeling well enough to play that day, however, Hayden still enjoyed seeing our friends there & hanging with Pop Z. Afterwards he & Pop Z went for a quick lunch together & then came back to the house... to work on stuff, of course... including customizing H's new bike with a hitch
& fixing a broken drawer in the vanity in my bathroom (possibly not as fun as the aforementioned, but necessary).

In the evening though, for the third night in a row actually, Hayden was not complying with the usual routine at all. Long story short, the Netflix movie is still in its sleeve.

Sunday morning was relatively uneventful-- just busy. Hayden would be coming with us to the cemetery, but we felt he would be okay with that. I tried to explain in simple terms that it's where people are buried after they pass away. I believe I said something to the effect of: even though GGG is in heaven we can visit her grave. I said we would have a short service there, just a few minutes, & then we'd go back to Grandma Suzi & Pop Z's house. 

Although I think he does get it in his own way, Hayden only wanted to know if he could go in Pop's car after. I said yes & this made him absolutely fine with everything else.

We were about half way to the cemetery when everything on the highway suddenly came to a standstill.

This was no ordinary traffic for a busy day-- let alone a Sunday. A short distance ahead, when we got close enough to read it, a digital highway sign indicated we were about a mile from an accident.

Fifteen minutes later we were a half mile from the accident, but a lot closer than that to a nervous breakdown.


The unexpected standstill made Hayden anxious to the point of anger. Hunger & needing a toilet was not helping anything either. Although I did remember to bring food & snacks for him, he was no where near calm enough to eat a morsel of anything. Not to mention he would then need a drink & we still wouldn't be any closer to a bathroom. (And in case you were wondering, he is not a pull-over-on-the-side-of-the-road-&-pee-in-the-woods kind of kid.)

That is not something he would be okay with, never mind the fact there was no place to pull over on the stretch of highway where we were stuck.


I soon realized we were simply not going to the make it to the cemetery in time either. I had already spoken to my parents at this point & they knew we would likely just meet them back at the house.

The truth is, missing the unveiling left a little bit of heaviness on my heart.

Just a notable side observation-- nor here nor there-- but interestingly my mom, her brother, & her sister all named their first born daughters with a J: for GG's mom, Jessie.
Due to unforeseen circumstances & so on & so forth... out of the 7 grandchildren to GG & Poppy... the three first-born J namesakes were the only ones present for the unveiling.

Oddly I am finding a different sort of comfort in this symbolism & hoping that GG's soul does too.


I will one day place my own stone. I'll find one with a nice purplish hue. In the interim I know that GG continues to be at peace. Interesting how her burial was just before Hayden's birthday last year, & her unveiling was just after Dan's birthday this year.

One day last summer I inadvertently discovered that we still had her message on our answering machine-- (yes, we have one of those--) when she called to wish Dan a Happy Birthday. At the end of the message she giggled. I have it saved in a 3-second sound clip. I don't think I ever told anyone.

I guess it's like a stone for me.  

--

"There is something suiting the antiquity and solidity of Judaism in the symbol of a stone. In moments when we are faced with the fragility of life, Judaism reminds us that there is permanence amidst the pain. While other things fade, stones and souls endure."
--David Wolpe, of Temple Sinai in Los Angeles, for MyJewishLearning.com 


 
--

Friday, May 9, 2014

caregiver's day

Narrow roads lead up to where we live
The driveway is not, nor likely to be paved

The people & memories inside:
They make it a home at the end of the day

Our furnishings are not all new

Our meals are decent although not gourmet
As long as everyone is clean & fed
Far as I'm concerned, it's an OK-day.

The table may have some crumbs on it

Or my hair may need more than a brush & spray
No doubt my truck could use attention

These, too, may be part of a typical day

If toy bin contents are on the floor
And beds in two of the rooms were never made
The breakfast pan is still on the stove

Then maybe it's a smidge less than yesterday. 

We will put someone else's needs first
Our lives will continue to be this way

My son too will need some form of care
Right now, later on, on this & every day

I will take pride in how he's cared for

I'll proudly stand & advocate; have a say
If it's not right, we'll work to fix it
This will be the case, on any given day.

So what to the full laundry basket
Never mind the dishes, they won't run away
If the sofa cushions need fluffing,
Save the straightening up for another day.


Whether an X paired with O... by itself...

Or the gene that made us who we are today
Dear Caregiver of Highest Honor:
You are a notch above, each y-ending day.



--

Dedicated to all of the tireless Moms in the fx community, & to all others who give care, or parent a person with special needs.
With love & respect, Happy Mother's Day-- every single day,
Hayden's Mom

 

Tuesday, May 6, 2014

my lucky day

Well the good news is, my knee feels better & the kitchen is almost flour-free.

My good luck began two Fridays ago... the last day of H's Spring Recess (must be some sort of trend-- remember the 2013 Spring Recess finale
?) 

I came home from work less than 30 minutes before the time I would have to relieve the sitter. I also brought home a fresh pizza pie-- one of Hayden's favorite foods.

I was in a happy mood because things have been going well with the new sitter, & I was looking forward to regular schedule resuming that Monday. But unfortunately the scene I walked into was nothing near happy. 


As I walked towards the back of the house to put the pizza on the table, there seemed to be a weird, cloudy, quiet aura. Within seconds I noticed that my beige kitchen floor looked white, the burners on the stove were mighty pale, & the sitter's ensemble matched too.

She immediately began apologizing & said that he got hold of the flour while she was cutting up his chicken, & he kept saying he wanted to bake something.

My eyes continued around the room to take in the full extent of his wrath. The drying rack was on the wrong side of the sink, & all of its previously clean contents were now back in the sink. The mat that goes underneath it was saturated & so were the dish towels & two of the three oven mitts. The countertops felt like sticky dough. The cabinet where I keep the baking tins was slightly ajar, as was the cabinet that the pots & pans are in.


We are a good week & a half removed from the incident, & I am still finding traces of that flour mess... under the heating vent, on the cooking utensils, & in the drawer below the oven. I have since spoken with the sitter-- as I was mainly confused over the time frame of how he could make that colossal of a mess while she was cutting up his food-- & I learned that she was not sure how to stop him. Or if she could grab it from him, or try to restrain him to get the flour away, & so forth. So, we had a discussion to offer techniques, help her recognize antecedents, & give some insight into his tendencies. (Oddly, grabbing flour out of the refrigerator not being one of them!)

The next day I was going to help Hayden who was in the bathroom. But unbeknownst to me he apparently just doused the floor in disinfectant spray. Before I knew what happened I was sliding into a split of sorts, with one leg stuck under me & the other one a little too far ahead. Somehow I missed smashing my skull into the side of the pedestal sink-- which maybe I can attribute to being short. I am not sure. All I know is the next day my body reminded me that even though I might be just flexible enough to not break my leg in an attempted split (thank you fragile x gene hypotonia), I really should avoid doing them. 

So, like I said, the good news is my knee feels better & the kitchen is almost flour-free.

The bad news is, my short stature & thick-ass head of hair were very helpful traits this afternoon.

Hayden was outside playing in his sacred shed & apparently had a toileting accident-- the kind that looks as though his stomach was out of whack.

Our main rule with toileting accidents-- because out-of-whack stomach aside, they're going to happen with most people with fx-- is that he at least tell us. He understands what is expected of him & he does know how to communicate this. Whether or not he chooses to, is a different story. But honestly for the most part he is consistent about at least telling us (& luckily the need for this is fewer & fewer).

This afternoon I am not sure why he didn't tell me. But I need to be consistent as well, & he needs to be reminded that this is important.

So after I cleaned him up, I explained that we would be putting everything away outside & closing up the shed for the day. I did not raise my voice. I said we would go inside when we were done & then I'd give him some dinner, & he could even watch "Gas Monkeys" (Gas Monkey Garage, on Fast n' Loud).

I prompted him to help out as I started putting things back. I kept cleaning up but remained quiet. He was standing nearby doing something with his handtruck but essentially it was only task avoidance.

I finally put my foot down because we were nearing the end of the cleanup, & I explained that he needed to put the last few things back in his shed or I would take away his iPad.

He angrily shoved the cart & the wagon into the shed, bumping them into his little table... then he threw his utility bucket in, knocking over a small chair in the process... & as he picked up his backpack (a.k.a. leafblower) to toss that in too-- I got the padlock ready & started to slide one of the doors closed. This infuriated him because it was a definite signal to the end of his activity.

As I turned around to lean over & snap the padlock in place, I felt something brush my head. Then there was a thud. I looked down & apparently he had thrown about a two-foot long 2x4 piece of wood right at me. If I had been his balder, slightly taller father... things could have ended much differently.

(I suppose the same goes for the bathroom incident.)

Must be my lucky day.

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