30 Days of Autism...Days 11-20

I've managed to keep track of the "middle" Days that I posted on Facebook...I will finish this project...our speed around here is just slower than "normal."

Here are my 30 Days of Autism -- Part Two!

30 Days of Autism: Day 11: Having a functional means of communication is essential to everyone, but even more so for those with special needs. Check out these men and their stories...incredible!

http://www.wretchesandjabberers.org/larryandtracy.php

http://www.youtube.com/watch?v=0G6VwHx4Jas

 

30 Days of Autism: Day 12

Sports are such a connection to the world for Weston. The way he plays and participates may not be "mainstream," but he is entertaining and enthusiastic! I'm SO very grateful to his two wonderful coaches, his teammates, and the parents I meet.

A new parent I met last night was gracious to ask questions and have interest in our experience. Hard to be "in" the world of autism and remember that not everyone has much experience with it. I love that she reached out and asked.

30 Days of Autism: Day 13 ...behavior...we're all guilty of making judgments on children and their behavior and even on their parents if we see them acting out in public. Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand. Consider that the child may have autism...the behaviors you may be witnessing are not due to misbehavior or lack of parenting; they are simply symptoms of autism. I can guarantee you, the parent is very aware and is doing his/her best to help that child cope.

30 Days of Autism: Day 14: dealing with autism day in and day out can suck...but sometimes we get too wrapped up in all of it...unfortunately, yesterday I was brutally reminded of what's really important. Matt suffered a major injury skiing; luckily he will be okay...love, family, physical health...these all supercede autism!

30 Days of Autism: Day 15: Early diagnosis & intervention are very important for our children so that therapies can be utilized to minimize symptoms and maximize acquisition of skills. Problem is some states don't cover autism treatments & therapies. Yea! MI finally becomes an "autism-friendly" state this month :)

30 Days of Autism: Day 16...

30 Days of Autism: Day 17: Matt's suggestion....living with autism means sometimes major issues can spring from a minuscule event. Simply using the "wrong" word, going upstairs "wrong"," doing something out of sequence, or stubbing a toe can turn his mood on a dime and unfortunately turn a simple task into a lengthy battle and/or meltdown...definitely a lesson in patience.

‎30 Days of Autism...continued...Day 18:

One of my favorite quotes lately...
“Here’s to the crazy ones. The misfits. The rebels. The trouble-makers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules and they have no respect for the status-quo. You can quote them, disagree with them, glorify, or vilify them. But the only thing you can’t do is ignore  them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.” — Apple

I wonder who "on the autistic spectrum" this might refer to...it's speculated that the following individuals may have asperger's or autism...

Satoshi Tajiri, creator and designer of Pokemon

Dan Aykroyd, comedian and actor

Abraham Lincoln, US Politician

Albert Einstein, German/American theoretical physicist

Alexander Graham Bell, Scottish/Canadian/American inventor of the telephone

Benjamin Franklin, US polictician/writer

Bobby Fischer, World Chess Champion

Vincent Van Gogh, Dutch painter

Jim Henson, creator of the Muppets, US puppeteer, writer, producer, director, composer

Bill Gates, Entrepreneur and philanthropist. A key player in the personal computer revolution.

John Nash, US mathematician (portrayed by Russell Crowe in A Beautiful Mind, USA 2001)

‎30 days of autism: day 19: 
years on the journey = 7.5
Medical specialists = 10+
$ spent on private therapy = 1000s
seizures = 1.5 years
IEPs = 6
Having Weston read & act out his Mother's Day poem which included hugs & kisses = priceless!

30 Days of Autism: Day 20: 
IEP = Individualized Education Plan
Better known in our home as INCREDIBLY EXHAUSTING PROCESS!
All parents of kiddos with special needs, not just autism, must endure this annually...wishing it was easier & less stressful for all involved!

30 Days of Autism...the first 10

Lighting him up BLUE today! 

To support April is Autism Awareness Month, I'm doing "30 Days of Autism" on my Facebook page and thought I'd share it here too.


30 Days of Autism: Day 1: Tomorrow is World Autism Awareness Day! Monuments and buildings around the world will "Light it up Blue"...Did you know that Michigan's Mackinaw Bridge will be among them? http://www.lightitupblue.org/






30 Days of Autism...Day 2: Autism now affects 1 in 88 children (1 in 54 boys)! As you can see...W is just like everyone else...only different :)

He plays soccer with his cousin and some other awesome friends and is coached by 2 amazing people! He loves his sports!


30 Days of Autism: Day 3: Last fall I started a blog...it's VERY cathartic for me. It helps me to find the humor and the hope! Today I'm taking it public...hopefully it can also help others in the same situation or at least give others a glimpse into life on this journey. Follow or Lurk if you like athttp://findingweston.blogspot.com/

Parenting a child with autism (or special needs or chronic health issues in general) is stressful to say the least. Researchers have even compared the stress of moms with children who have autism and found it to be similar to the stress of combat soldiers. Sometimes it's just good to know you're not alone.


30 Days of Autism: Day 4 -- elopement (no, not a Vegas vacation that ended differently than you expected) -- it's a problem for approximately 50% of people with autism. They wander for a variety of reasons and this causes a host of concerns.

Because W is one of this 50%, we visited the local Sheriff's dept today. The deputy was great--he instructed W to stay in the yard & not to talk to strangers. He explained that police are there to help him and will help him find us. We provided a photo and profile on W explaining how he might react in an emergency situation, etc. Thanks to my behavior consultant for suggesting this!

To top it off, W got to sit in the police truck and sound the sirens!


30 Days of Autism: Day 5:






30 Days of Autism: Day 6: Looking for a good read this Spring Break? Check out "House Rules" by Jodi Piccoult. This is a fiction murder mystery which centers around a young man with autism who gets caught in the middle. Although it's fiction, Ms. Piccoult certainly did her homework--this is a glimpse into how autism can impact an individual and his family...it definitely got me thinking of what might be to come...


30 Days of Autism: Day 7: Many individuals with autism are challenged by sensory processing disorder, and W is one of them.

Author Ellen Notbohm explains...
“Picture yourself on the world’s grooviest roller coaster….How long could you do your day job while on the Cyclone or the Millenium Force? Could you teach class, write a report, clean the house while enduring the vertigo, the screams of fellow riders, the g-force of the rushing air, the unexpected drops and abrupt changes of direction, the sensation of hair in your mouth and bugs in your teeth? It might be fun as an occasional thrill, but you are ready to get off after the 3-minute ride. For many children with sensory processing disorder, there is no exit gate; it’s a 24/7 affair, and it’s the very antithesis of thrilling.”


30 Days of Autism: Day 8: From the Autism Science Foundation, "What is Autism?"

"Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include repetitive motor behaviors (hand flapping, body rocking), insistence on sameness, resistance to change and, in some cases, aggression or self-injury."


30 Days of Autism: Day 9: Unusual interests are another typical "symptom" of autism. We just returned from an overnight road trip...W's favorite parts--stop signs, traffic lights, and of course the ELEVATOR at the hotel! 

Some call these interests, Distractions; the key is to see them as Fascinations and use them for motivation and opportunities for learning. For all my teacher friends, a good resource book for this is "Just Give Him the Whale" by Paula Kluth.


30 Days of Autsim: Day 10: Autism is definitely a controversial subject...from causes, to how to diagnose; from symptoms, to treatments. It's easy to feel lost among what seems like countless parents, medical specialists, special education staff, and other professionals who all disagree...but it's the kids who lose in the end...does it really matter who's "more right"? Could this increase in the population of Autism be a combination of factors that manifests itself in different ways in different kiddos and requires a combination of treatments? Why can't medical doctors buy into some of the bio-chemical theory and treat the "whole" child and why can't educators use evidence-based behavior therapy for academic skill acquisition as one might use for self-help development?

Ahhh, the changing of seasons

Spring sprung early here...a definite welcome change to the dreary, sickly winter we experienced!  BUT it caught me off guard in the world of autism...

I should've been prepared, but it crept up on me again.  Moving from long pants to shorts and long sleeves to short sleeves and boots to shoes can create some havoc in the routine and sensory perceptions of those with autism.

It's hard to explain after months of bundling that 3 blankets is excessive when the weather's crept into the 70s and you're still sporting long johns as pajamas.

If the seasons and their ensuing weather patterns were consistent here, I might be able to star a couple of dates on the calendar to signal me to start prepping for the coming changes and ease our transition.  In the meantime, I'll do my best to offer explanations and slowly adjust our routines -- at least that's a lesson in coping with normal life...we all need to be flexible...just harder for some than others :)

theory of natural consequences...

Let's just say our morning routine lately has been a battle of wills.  I am working diligently with our behavior therapists...but sometimes frustration sets in and I revert to "normal parenting" in a not-so-normal world.  Recently Weston went to school in socks...yesterday he went to the bus stop naked!

After hitting my breaking point with trying to have him don shoes (picture trying to wrestle an octopus while attempting to put shoe on one foot and keep it from removing the other shoe + other articles of clothing)...I said, "Fine, get in the car.  We'll put shoes on when we get to school.  Little did I know that while I was packing up the car, he chucked his shoes from where I had left them and thus, they were left behind that morning.  About halfway to school I realized we had no shoes.  I front-loaded the little bugger, by explaining that we did not have his shoes and that he would have to walk into school in his socks and explain to his teachers why he did not have shoes.

Upon arriving at school, he really didn't seem fazed...he marched right across the parking lot and sidewalk to enter the building.  He was only bothered as everyone we passed questioned him or remarked about the missing shoes.  He even tried to ditch me before we got to the classroom to encounter his teachers as he knew they would have something to say.

He learned that you miss going outside when you don't have shoes at school...kind of a big deal!

The naked bus stop trip was similar...I delighted in the fact that it was COLD yesterday morning and that even walking to the car on the chilly concrete was upsetting for him. (I did provide a blanket in the car--the photo is priceless).  He was a blubbering mess the entire time we waited for the bus...wanting to "go back, start over."  And was not happy with my response that we had to wait for the bus and THEN we would go back.  When we got home, he was still crying (mostly drama at this point)...I pointed to the pile of clothes, instructed him to get dressed and went about my business.  Slowly but surely (and of course with some added destruction to point out his irritation--kitchen chairs were flung over), the kiddo got himself dressed and even asked for help appropriately :)

Unfortunately I don't have oodles of time for these natural consequences, but since he's on spring break, I'm going to take advantage of them!

Evidence that someone "special" lives here...

The first clue might be the multitude of visual schedules lying or posted around the house (I think Mason was mortified to have friends over after I forgot to remove the "how to go pee" schedule above the toilet a few years back when the soccer team was here for a big dinner; needless to say he's hesitant to have friends over any more).

The second giveaway might be the EXIT signs hanging above some of our doorways.

If you look closer, you'll notice all the ways in which I could employ a personal handyman (probably on a monthly basis)...

• a neat hole (the perfect diameter of a door knob) in the drywall behind the entry door...due to a broken door stop and excessive & repeated slamming of the door + a pair of winter boots strategically placed to block additional slams (complete with a sticky note on the wall instructing do-gooders to leave the boots in their place!).
• door jambs that have been knocked loose and do not line up normally with the other trim pieces.
• black "ball" skids on multiple ceilings.
• pictures that hang crooked on the wall or just the nail hole "slightly enlarged" from the multiple swipings, thus no picture hangs there anymore.
• scrape marks on the ceiling around the dining room chandelier due to excessive spinning of the light fixture.
• a mysterious food particle "cemented" to the ceiling above the kitchen sink.
• light switches that do not stay in the "on" position from extreme OCD lights on/lights off behavior.
• a large wall clock which would be a fabulous and functional piece of decor, if only it had the hands to display the time!
• sharpie ink used to cover up dents, scratches, scrapes on a variety of furniture and decor.
• crumbling drywall from the spot where a towel holder hung three "fixes" ago
• missing backs to TV remotes and cordless phones (once the little tabs bust off after an unexpected "flight," the backs just don't stay on).
• digital clocks that are all programmed for different times.
• drawers that cannot be pushed in all the way, due to bent frames from being used as a stepping stool.
• sugar bowls without the matching tops (long ago busted)
• cracks, dings, or other exposed drywall in virtually every room of the house -- typically caused by launched items.
• onion peel and cracked pepper in my Kitchen-Aid mixing bowl (obviously deciding to build his skills)

If I get past the obvious...and get with gratitude, I also...

• hear contagious laughter.
• beam with pride when one of the other boys interacts with interest and compassion and carries that over into experiences with other people with special needs.
• find myself shaking my head in disbelief at some of the things he comes up with.
• laughing that he gets me to do some ridiculous behaviors to satisfy some of his obsessions.
• delighting in new found skills...even if they happen at nano-speed.
• latching on to positive moments that give me hope for the future...

"He's a conundrum!"

Those are the words the neuro-psychologist used to describe Weston a couple of weeks ago.  A conundrum -- a puzzle, an enigma, a mystery!

We had the pleasure of meeting her about 3 years ago; she was the one to finally give us the official Autism diagnosis.  And while some may think, "Oh, great, even the professionals don't get Weston" or "Boy, that's helpful," I see her using that phrase in a positive way, and I can tell by the way she looks at him that she is intrigued by the possibilities and interested in him and his future.

Yesterday we followed up with some more testing, and the doctor told me in regards to Weston, "I think there is just SO much in there that we don't even know about yet."  It is truly validating when a professional concurs with your thinking.  So often I question myself...am I expecting too much from him, from his teachers, from his future???  It's a relief to know that someone on the "outside" but "in the know" believes in him too!  It makes all the fighting and advocating worth it.

I am anxious to see how all the testing and questionnaires and interviews shake out and how that compares to his initial evaluation 3 years ago and how we might use the information to help direct his school programming and supports for the years to come.

So I'll take "conundrum"...It's right up there with the statements one of the first professionals made upon meeting Weston when he was 12 months old..."You'll likely never get a real diagnosis to explain what's going on.  But sometimes, not knowing is better than knowing.  There's no "ceiling" when you don't have a label for it."

A day in the life...a forgotten draft from February

A day in my life lately, may look like the following...

1:00 am - wake up to the pitter patter, or thumping, of small feet on the stairs (yes, I can hear this while asleep, despite the sound machine cranking in my room...guess I'm in "shallow" sleep, instead of deep sleep).  Step into the hallway to find Weston at the bottom of the stairs. I ask, "What's wrong, Weston?"  He explains, "Start over" and gives his arm a waving gesture as one might do when saying, "Come in."  In response, I say, "ok, ready, go," and sweep my arm in that motion.  Instantly he marches up the stairs and back into his room.

3:00 am - repeat of 1:00 am

6:00 am - wake to my bedside alarm, or to the kitchen timer, if I've moved to the couch because of the midnight antics...chanting "time to make the donuts"...a phrase stuck in my head since lovingly shared by one of Weston's teachers.  Wake up oldest 2 boys, make coffee, shake boy #2 again and prod to get out of bed, slip into workout gear.

6:20-6:55 am - guess when Weston may wake up, make lunches, organize Weston's materials for school, guess whether boy #1 will be in a decent  or foul mood and psycho-analyze/cheerlead until he leaves for school.  Remind boy #2 of several things of which maybe 50% will be completed.

7:00 am - wake boy #3, if Weston is still sleeping, approach with caution, open door and try to wake slowly and sweetly and coax to come downstairs.  Prepare for battle and wonder whatever happened to the phrase, "peaceful morning."

communication needs no words...

kind of hard to get the kiddo dressed and ready for school when his shoe is swimming in the toilet...his message was insanely clear!

Unintentional, but still irritating--profound observation from my15year-old

Last night while trying to sound enthusiastic when Weston answered a math question right on his homework, my oldest spoke up and said, "You know, Mom, if I was an 8 1/2 year old kid trapped in a body that worked like a 4 year old, I'd be irritated when people treated me like a 4 year old!"  This was the catalyst to a great conversation, (after math was completed, of course).

I think we're all guilty,...me, dad, his brothers, his grandparents, his school staff, and even his peers (although they probably do the best job) at one time or another, of talking down to Weston, of treating him MUCH differently than we would any other 8 year old.  This is unintentional, but it doesn't do Weston any good.  And, my older son is right, maybe he does find it irritating and condescending but just can't communicate that.

We need to not only assume intelligence, but we need to assume age-appropriateness.  He is an observer -- he will mimic our speech and actions, and he will only meet our lowest expectations.  We need to speak to him in proper English; we need to play with him as we would other kids his age; we need to have the same social expectations that we would for other 8 year old boys (he'll be a 3rd grader next fall; do we still want him to greet people with hugs?  Does he still need to hold hands with school staff in the hallway?  Should we use voices or language for positive reinforcement and praise that we would reserve only for very young kiddos?).

...so instead of being SURPRISED that he can do a task that's age/grade appropriate, I think we should affirm that it was a job well done and that we knew he could do it.  I think we should teach him to use and ask for hand shakes, high fives, and fist pumps instead of hugs and I think we should encourage him to use his speech to tell others of his progress and let that be the internal motivator to do well at subsequent tasks.

If we don't and simply do for him, talk down to him, and reduce our expectations, then we undermine and take away his dignity! And that is unacceptable.

Only Special Moms

Who else is up texting at 2 a.m. after falling asleep somewhere other than their own bed?

Special moms of course!

When I heard the text come in early this morning from my resting place in the hallway, I thought it could be bad news from my mom, but NO, it was my good friend (another mom with a kiddo with autism and other special needs) who had awaken from her latest resting spot in her son's tent bed because she remembered she couldn't make our breakfast date this morning.

Just another way in which we're "special"  :)

What being sick taught me

Feeling sick is never fun, but after two days of being pretty much out of commission and sequestered to the basement, I did learn a couple of things.

First of all, always count your blessings! Don't take moments for granted- does anyone ever think "this might be my last shower, my last meal, or the last time I get to hold my loved one" or are we more apt to just rush through the moments? I'm thankful I was able to rest & recover quickly and I'm grateful to my husband and oldest son who stepped up to take care of the 3 sickies and take on "Weston duty."

Secondly, I need to create a "Weston manual" as a cheat sheet for family members for when I'm down and out (or unexpectedly worse). As the stay-at-home caretaker, I've assumed primary responsibility and contact with the pediatrician and other medical specialists, the school staff, the behavior consultant, and therapists. I typically administer Weston's meds and I make sure he follows his gluten/casein free diet and maintains a regular bm/ hygiene schedule.

While everyone in the family observes these things, no one is typically on it 24/7 except me. And just like there's no way I could step into their roles easily--I'd have a heck of a time with AP Calc for sure, and I have no knowledge about the coal business, but I might do okay as interim basketball coach: I've watched a lot of games!

So I've added the creation of a "mom's binder" to my to-do list.

Be Happy

I can't help but smile when Weston begins to snap his fingers and sing, "Don't Worry, Be Happy!" especially when it's SO appropriate for the moment we're in.  Tom Cremeans and his message was not lost on this young boy...lots of truth in 4 words particularly when spoken from Weston.  Ooo, ooo-ooo-ooo, ooo-ooo-ooo, ooo, ooo, ooo, ooo, ooo

Intervention vs. Inclusion

Can you have both intervention and inclusion?  How do you get everyone on the same page...medical staff, therapists, teachers, etc...?  Who do you believe?  What philosophy do you adopt?  How do you prioritize when you have so many things to work on?

Weston NEEDS both intervention (maybe even intense) and inclusion!  BUT...he has pockets of skills and holes in all areas of his development...Have we missed out on correcting some of his deficits because we have a mix of diagnosis and only came to look at autism so late in the game?

ABA has helped us look at his behavior and ours and certainly things have improved but we still have such a long way to go in many areas including compliance.   While early intervention has helped Weston to continue to make small gains, I wonder if it also developed some bad habits in the way he responds to prompts, etc.  Must we start at the very beginning of everything again in order for him to "get" stuff...or can we find a way to fill in the holes and take advantage of what he does know and what he is interested in?  I think this is who he is...can we find a way to bridge his knowledge of sports with how to communicate socially?

Some days I think I need an expert in autism, ABA, and apraxia.
Some days I think Weston just needs to hang with his friends and be a boy without the baggage of therapy, homework, seizures, procedures, etc
Some days I think Weston's best chance is to take a "sabbatical" with one of the "best-of-the-bests" (whoever that might be and how do I find that person) and spend a year in intense educational, social, communication therapy and then "re-enter" the inclusive world.

I wish the answer was clear...

seizures vs. side effects

which is worse...seizures which interfere with life and learning or medication side effects which alter physical state and personality???

skill deficits :(

I've been making a list of deficits in the daily living department lately. Obviously curbing the negative destructive and aggressive behaviors continue to be first and foremost and still have the highest priority, and of course, language delay is a HUGE component in these behaviors and other social and academic deficits, but the lack of finesses in the daily living skill set will likely become much more limiting on his independence if not addressed soon...

When I first started jotting things down, I was thinking, "Gosh, I wish there was an overnight summer camp that would focus on just everyday skills in an everyday environment." It seems like a complete focus and arena to pay attention to small gains, etc would be key...maybe that's how the morning time next school year will be when it's just him and I and no other schedules...

SO...Here's my list...

1. going to the bathroom without being asked (listening to his body) and managing the entire affair-- getting all of urine into toilet instead of on the floor, etc, sitting on toilet (using hand to deflect any urine into the toilet in that position), wiping, managing fasteners, understanding not to touch dirty/germy areas of bathroom (and washing if you do!), navigating a public restroom (+stranger danger in this environment)--ugh

2. Mealtime--using a fork/spoon better without having to use his hands, feeling confident with a variety of cups, glasses, bottles, etc, learning to tuck a napkin in his shirt or put on his lap...because he's messy (a lot goes on his lap and all over the floor--this could be an oral skill issue as well).

3. Getting dressed/undressed without help and without supervision in a reasonable time :)

4. brushing teeth independently -- learning to spit! -- wiping/blowing his nose appropriately in a kleenex and not on my arm :)

5. showering -- managing the faucet, washing all his parts, managing/coordination of soap, washcloth, & shampoo bottles

6. out & about -- managing sensory overload in different stores, restaurants, etc -- approaching strangers appropriately -- not touching others' food (at the restaurant last weekend, upon leaving he bee-lined it to another table where a little girl had french fries on her plate...he reached out to grab them, I tried to deflect his hands, half the fries got spilled about --UGH)...what do I say in these instances??? Driving home, I realized I should've paid for the little girl's meal!

I'm sure there are others...but these skill areas seem to be key to helping him fit in, have pride, privacy, and a chance at the most independence!

Success! When a smile says a 1000 words!

a good note...

Last Thursday, school had a hot lunch (finally) that Weston could eat and he decided to buy.  He was pretty verbal at home about getting a tray and who he wanted to help him, etc so once we arrived at school to encourage his language I prompted him to tell Toth and Huellmantel that he was buying lunch and that he wanted Cody to help.  Huellmantel asked him a question about whether he had money, and it appeared he went to check his backpack in the hall.  We continued talking and then realized he wasn't around...come to find out, he took it upon himself to walk down to the cafeteria to see Ms. Farmer and buy a chocolate milk. I learned later that he waved at the ladies in the office on the way down and on the way back.  The lunch lady emailed the following when I asked her about how that conversation went...would've LOVED to been a fly on the wall...

"Wes was very talkative!  He told me he needed a tray!  And he needed a chocolate!  I told him I'd bring his tray to class later!  Very smiley and confident!"

He returned to class with a huge smile and an attitude that exuded "I'm the man!" as he put the milk on his desk and got to work on his morning news.  I'm thrilled that he independently decided what he wanted, navigated the building (and a social encounter) and completed the task -- woo hoo!  

Later that day he took empty tape rolls to the office and asked "Can I have more tape please?" without anything written...they had orally practiced before he left the classroom :)

Small steps...long journey...priceless moments!