Whatever did we do for entertainment before this real-time, real-people reality showplace at our fingertips, at our whim? I gain so much support, inspiration and information from my Perky “All in a Day’s Quirks” profile community. Autism parenting can be incredibly isolating. Sharing and caring have helped me through the toughest times of my life.
My personal “P” profile allows me to stay connected with friends and family and keep a foot planted in a parallel reality. My BA (Before Autism) “P” facebook community knew me before my jumpy-worried-stressed-overly-serious-exhausted-frustrated demeanor of late.
Who needs reality tv? You gotta love a place where you can escape to get "poked" by your:
7th grade son’s ex-girlfriend’s mom
melancholy boss from a college internship
a sarcastic cat, like her marvelous mama
haute hairdresser I wish I could afford
first heartbreak - no worries, I’m over it
neighbor that you only see on facebook
smooth sultry singer cousin/soul sista
adoption social worker whom I adore
college prof who made all the girls swoon -though I was dutifully focused on sketches
grade school BFF (and entire family)
crazy cartoonist
daughter’s favorite coach
Player who’s “Facebook Official” relationships are too numerous to count
wickedly rude goad monster who plays victim in love relationships
Mafioso wise-guy, no photos please
classic car connoisseur with a fierce Napoleon complex
aunt’s conservative cleaning lady
geographically-challenged Mensa Man
proud parent of piercing/tattoo artist extraordinaire
playgroup-mom-turned-swinger, TMI!
stalker-esque person you block from everything but are afraid to unfriend (Thank goodness for privacy settings!)
3rd cousin twice-removed’s realtor niece
Home party mompreneur who posted 50x/day until you blocked her, sorry
Uber-judgemental fundamentalist with up-to-the-minute hateful diatribes
G’s OT goddess from 3 years ago but isn’t covered by new crap insurance
a brilliant gazillionaire
famously talented socially inept plumber
decades-ago "friend with benefits"
a happy horse
Autism Warriors soulmates who light up facebook in the wee hours.
Truth: I enjoy each and every member of my personal facebook community of friends for their encouragement, laughs and wisdom they share - or strictly entertainment value. Know-it-all-Nesbit, Debbie Downer, Wild Wayne, Pretty Profile Pix Pam, Information Ike, Sharyl Share-it-all, Defacedbook Don, Political Paul, Regina Rant, Laurie Links, Best Blog Benny, Inspiration Isa or my besties – you rock my facebook world!
Small Print:
All characters appearing in this work are fictitious. Any resemblance to real persons, creatures or facebook friends, living or dead, is purely coincidental. Mostly. You know who you are…shhhhhh.
I loaded up the compost pile with debris from pruning and trimming the garden. As I went to grab the last 2 stalks from our yucca plants, G protested,
“No! I want to save those!”
“Why, what are you going to do with them?” I asked, incredulously.
“Well, I’ll take them for a walk, then play a game with them. After that I’ll take them swimming, then maybe for another walk…”
Oh dear. This after a fun family day and playdate with a friend from school. Just when I think his social skills are improving, he makes friends with a dead plant. Just gotta laugh.
Yucca-yucca-yucca. I couldn’t resist.
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G's been in love with muscle cars for the last few months. Car rides have gotten a bit more interesting since he's expanded his interests beyond Garbage Trucks.
G: There's a Garage Challenger!
N: It's a Dodge Challenger, not a Garage Challenger, G!
G: No! I said GOD Challenger. It was a green God Challenger with
stripes. I think it was a race car! Did you see it?
A Runner. That’s what we always called G. I used to joke that he didn’t learn to walk, he got up to run. “I’m sorry I missed __ (fill in blank),” I’d explain, “I was chasing G.” I considered naming my blog “Chasing G”. It works on many levels. Friends, family, teachers, acquaintances, therapists have all heard me say it countless times. Everyone. Everywhere. Every time.
A particularly awkward friend frequently comments with a smirk, “We all wonder why you aren’t as thin as a toothpick, because you’re always chasing G.” I simply have no words for that. Of course I agree. It must be stress hormone-related weight gain, because I do get plenty of exercise chasing G. I’ve since run from the friendship – wonder why?
Energizer bunny. G’s running was the 1st sign that something was amiss. We have a bit of ADHD in our family history, so we were told to keep an eye on it. But pediatricians, therapists, schools, teachers, friends all brushed aside my concerns with a blanket dismissal, “All toddlers are active.” But everywhere we took him we’d hear, “He’s so busy!” or “How do you keep up with him?” or “I’m glad I’m past that stage”. My neighbor used to “joke” that we needed an invisible fence with an embedded chip to “poke” G when he went out of bounds - like they do for pets. Yikes! I always respond that he’d keep going anyway. He’s that driven. Tunnel G-vision.
Curiosity. In that same vein, I often described to professionals that G’s behavior was that of a puppy discovering new place; running around from object to object, room to room checking out a new territory. But thinking back on that, he oddly never checked out PEOPLE. He’d run towards a dog, a truck, a bird, a leaf, a window, a puppet, a computer, a game, a closed door, an open door, a hallway…but not a person. Big. Red. Flag.
Houdini. G was an escape artist at 2. We installed baby latches on all cabinets in our house when G was about 9 months and crawling around. Before we even finished the project we’d done in 2 other homes for our other toddlers (we were semi-pro in the art), he’d figured out how to open them! We installed deadbolts up high to keep him from escaping, he pulled a stool from the kitchen to unlock it the next day. A local day care had to install alarms on their doors after G kept slipping out of the classroom. The owner dubbed them, “G alarms”, and uses the term with his staff to this day. We installed loud screaming alarms at home, which finally stopped him in his tracks.
Anxiety. Effect on parents/caregivers? I refer to it as being on high alert like a medic. But medic I’m not. I’m emotionally bound with love and devotion to this sweet boy. I have other responsibilities. I never, ever get a break. We worry when we’re not with our wanderers, worry in our sleep. 24/7 on high alert.
Am I alone??? Awareness Frustratingly Absent!
Isolation. Despite reading recently that 92% of autistic people wander, I never came across wandering and elopement as a symptom of autistic behavior in any of my early reading online, articles, books, talks, clinical test forms, etc. I looked, I asked, I threw up my hands. The closest I came to it was “impulsive”, and “seeming not to hear when his name is called”, or “always busy”. Where in all of this literature was this peculiar, dangerous and extremely stressful behavior? I finally learned via Facebook of all places. I read a book by Laura Schumaker, author of A Regular Guy: Growing Up With Autism who described her son’s elopement tendencies. I felt vindicated at last – another mother who understood my terror. It was also on Facebook that I learned of Sheila Medlam’s son Mason who drowned across the street from her home. He was 5 like my G. Then came the big news story of Nadia Bloom, who wandered away and was found after 3 days in a Florida swamp. After these national news stories, more media attention was given to autism elopement. I began to notice an increase in information about wandering, location devices for autism elopement, and other news stories of children who’ve come into danger or died from wandering accidents.
Awareness. I was invited and was instantly moved to take the IAN survey on wandering. I was amazed at the story the survey questions told. Obviously other parents were concerned about the exact behaviors that I was, or the questions wouldn’t be included in this carefully formulated research study. I rejoiced in the fact that I wasn’t alone. That may sound a bit twisted - I certainly don’t wish this upon anyone - but I was truly relieved that I wasn’t dealing with an anomaly. Elopement is a common symptom of autism; but not widely known, documented or discussed. I decided that I needed to help raise awareness in any small way. I answered the survey frankly, with details. The IAN Project survey has helped advocates to get Wandering a diagnostic code for physicians and health care. What a boon! If 1 other parent, doctor or caregiver realizes the dangers, makes the connection, or takes safety measures because of this important milestone, it will make a difference. Let’s help head off tragedy, prevent grief.
Save lives. Save families.
Safety First. For the sake of G, we’ve had to make difficult decisions. Each year we join a group of old friends for a family weekend at a Lake Huron cottage. Because the cottage is across a busy 2 lane highway from the beach, my husband and I take turns alternate years staying home with G for the weekend while the other takes the older 2 children. It tears me up inside to deprive him of an experience which I know he’ll enjoy, a tradition that will shape his childhood as it has my other 2 children. But it’s smartest for his safety and our stress level. Recently we had to pull G out of an inclusion program he’d looked forward to for months because security measures were loose, despite our repeated pleas to staff about G’s safety needs. We’ve made the decision not to go to sensory overload spiking events like amusement parks or water parks with G until/if he stops running. Even when we split up and a parent is 1:1 with G, he takes off and gets lost in an instant. All 5 of us have a difficult time rounding him up when he gets plugged in. We can’t take chances with our kiddos’ safety. Why tempt disaster?
G gives no warnings, he’s just gone without a look backwards. No words, sign language, visual cues, signs or rules stop him. Social stories work logically and with repetition, but evaporate into thin air when he’s intrigued by a distraction.
It takes a village. For months this year I fought vehemently with district administration to employ an aide for G to help him transition into kindergarten. I’m thrilled that the school staff is on board and flexible. G’s kindergarten teacher asked for a book so that she could read up on autism to enable her to understand and work with him better – amazing support! Preparation, guidelines and communication with caregivers is key.
My Autism Wandering Prevention Safety Tips:
I dress G in bright bold - often patterned shirts to help us locate him in a crowd
Dress all family members in the same color/type clothing or accessory when visiting a crowded venue. Try to think of child’s height/visibility – wear matching flip flops, tie bright yarn on belt loops, carry identical water bottle, etc. This helps the entire family locate each other.
Take a digital photo of child upon arrival at a crowded event. This helps others recall your lost child or to help spot them.
Split up with others, ask for help searching for your child
Prep on the way to an event by going over safety rules: #1 is always tell caregiver if you want to go somewhere (good luck with that)
Give the child a venue map or create a scavenger hunt or shopping list to keep their focus
Try to pair up wanderer with a buddy
Upon arriving at an event, set up a safety spot (sensory free, if possible) to meet if anyone gets lost. When overloaded at school, G often flees to an empty commons area and sits in a window looking outside (see above photo). Running is self preservation, pure and simple instinct. These kids are pretty smart when it comes to knowing what they need and what to avoid. It’s when we get in their way to make them conform that brings on meltdowns. Hence the term, “flight or fight”. Imagine being miserably sick with the stomach flu in a room full of screaming babies – you’d run quick or push your way out!
Label clothing, make sure child knows their name, parent name, address and phone #.
After leaving G’s “Bike Camp”, PEAC’s at-your-own-pace bike riding/safety summer course, I had a quick errand to run. While driving through downtown Ann Arbor, MI, I suddenly slammed on my brakes, alerting G out of his itouch reverie.
G, “Whoa, what happened?”
I explained to him that a Scooter Bike from oncoming traffic had pulled right in front of me to make a left turn. Then she made a face and yelled something at me.
“What was she thinking?!? If I had not stopped, we would’ve hit her!” I finished. "She needs a bike safety course!"
G in an amazed voice, “Are we in New York?” Love the randomism, another one that has me shaking my head, wondering where that connection came from...maybe a movie?
Perky’s Daily Quirk (PDQ)
G wanted to show his PEAC "Bike Camp" teacher his craft from “PBS” (VBS, Vacation Bible School)…
"Do you think he'll like my 'fish flops' glasses?"
He did so well today, he's getting a bit ahead of himself, maybe the sharp shades lend him confidence. It’s all about looking cool, lol.
He tried starting himself, and did. But as always, when he falls/fails, he takes a few steps back. His instructor quickly got him back on track and instead had him work on turns with an obstacle course today. PEAC has magic crumple cones that bounce right back into shape. Brilliant!
I adore his intense concentration. Go G!
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Temps are forecasted to be in the high 90’s all week. When I made out my grocery and meal plan for the week, I decided cool had to rule. No oven or stove usage, just micro or fridge items. Yesterday I made a large batch of my family pleaser Tuna Noodle Salad. It fits the bill as having a little from each food group when I serve it with fresh fruit.
Today as we came in for a quick lunch, M grabbed the noodle salad from the fridge, “I’m starving! I’m making a tuna noodle salad sandwich.” LOL, now that’s some serious carb loading! Of course I stopped her, but my lucky skinny mini M could pull it off.
I made up my own acronym for quick snippets of life that I’ve coined daily-isms. Growing up, we said PDQ (Pretty Darn Quick) to mean: get a move on! Here goes, can’t wait to share the lively fun of our daily-isms via PDQ.
G, “Owww, something just bit my tooth!”
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Garbage trucks have been G’s obsession since birth it seems. I’m pretty sure we have every garbage truck toy under $50 made in the last 5 years, and a couple really cool pricey ones too (thanks, GodMom Aunt Karen, Aunt Chris and Santa!). Luckily for us, the Garbage Truck market has grown with G. A very happy coincidence indeed. With the push for “green” living, greater emphasis is put upon recycling, saving the planet, and living less toxic lives. Thus, the garbage and recycle truck market has exploded. In a good sense, it can be a great learning tool for ecology. G’s interest goes waaaaaay beyond that. G has plenty of real Garbage Trucks to watch (worship). They’re EVERYWHERE!!!!!! Why did the boy cross the road? To get to the next trash can! I used to be an avid garage sale-r, but after a few incidents, necessity dictated that I go only when G is at school. At the height of his obsession, I caught him inspecting peoples’ garbage cans, actually lifting the lids and peeking in while I checked out a sale. Strangers! Though, does that distinction really matter when discussing garbage? Yikes! We dare not go for neighborhood walks on trash days, G will insist upon checking out the various garbage cans. We live in a semi-rural area where we pay private companies for our trash removal and recycling. What that means is lucky G sees garbage trucks and bins of all styles, shapes and colors 3 days a week. His excitement when pink trash cans appeared (for Breast Cancer Awareness) was stellar, comparable to Christmas morning. Really. I’m a bit bummed that we didn’t get one. During one preschool year I had to alter our schedule to allow extra time for G to wait and watch our truck. After they finished our court, we’d jump in the car and travel behind them so that G could watch the whole process. Holiday weeks became a nightmare – trash pickup was totally off schedule and we often missed the trucks on their altered schedules. For 2 years, no matter what we were doing, all household/play activity had to halt for 10 minutes while G trailed the truck’s path via windows throughout the house or running out to the front yard to watch. I had to draw the line at following random garbage trucks while out driving. I/we endured many a loud and heartbreaking tantrum as G mourned a missed opportunity.
When G began his love affair with the giant green trucks, I was hard-pressed to find any Gahbig Twuck (GT) items. So I searched online - and lo and behold – discovered YouTube (squeals of delight and thunderous applause). I was in awe of the huge variety of clips dedicated to garbage that YouTube offered - over 25,000!!! What??? There are videos of garbage trucks doing nothing more than collecting trash, dumping it, operating the truck, driving to the next home or business - over a million hits! Amazing.
My G was mesmerized and replayed them over and over. He became a YouTube junkman junkie at 2. I lost my iTouch to G’s vast WasteLand. It was worth it to see him happy and seated to allow for a quick shower or housework. G quickly learned how to search for vids and save them to favorites for a quick GT fix. Convenient! He was elated to find other kids who had the same love (fixation) as him. There are currently over 1000 GT toy clips on YouTube. Wow, I really outta video G with his fleet. He watches 9 minute videos of kids playing with their GT’s. Some toy trucks make noises, move via batteries, others are totally kid-powered.
G found vids with veteran garbage men or truck companies showing off new or vintage trucks, bragging a about their features and stats like a classic car owner. I was dumbfounded by the vast world of GT lovers. I fought it for a short while, for decorum sake (ewwww), then finally gave in.
G was happy enough without actual GT toys. He made everything in his day relate to GT’s. This was the only imagination he showed at this point. He’d scoop his cereal into the bowl, with GT sound effects. He’d load blocks, Legos, rocks, acorns, paper from our shredder (a vacuuming nightmare!) mud, sand, grapes, coins, you name it – into trucks or large Gladware or box “trucks”; use cups, plastic laundry caps, small boxes as the trash cans. He did this EVERYWHERE.
Sandcastles? Nope. Makeshift garbage collection on vacation. Note the intensity of his play. He gives Dad instructions on how he’ll dump it, and as seen in the last pic, obviously it’s not carried out the way he planned it. Epic fail.
When we started OT, no matter what plan his therapist made, he’d somehow work in a baby blocks toy that he’d turned into a garbage loading operation. She eventually, patiently gave in (as we all did)and incorporated his obsession into his therapy theme. He attended wonderfully, until it was time to transition into something non-trash oriented. Sigh. We love you, fun Mrs. Cake!
G could be seen in the neighborhood and around town in a world of his own, TrashTown, G’s GreenScene, GarbageRUs, etc. We had to laugh or we’d be mortified. He’d act out elaborate trash pickup scenarios, using shhhhh (brakes) rmmmm (gears, acceleration) and beep beep beeps (back-ups).
G’s custom “G the Garbage Guy” Costume, he carried a small trash can for trick-or-treating. Living the dream!
During one instance I was walking with G as he travelled the neighborhood acting out his imaginary garbage truck route. He’d stop, pretend to open a mailbox (stand-in trash can). He really did open the first few mailboxes until I told him he’d be arrested. Drastic I know, but he’s darn headstrong and prone to outrageous tantrums. He repeatedly played out his dramatic scene of lifting the imaginary trash cans, loading them on the lifter, emptying in GT, pushing buttons, hitting smasher, returning garbage cans, driving off, etc. No deviation from the process, no words, just sweeping arm motions, body shifts, sound effects. EVERY. HOUSE. IN A 1 MILE CIRCLE OF OUR NEIGHBORHOOD! Our next door neighbor who’s a real sweetie joined us about 3/4’s way through and it took 30 mins. to get home. She patiently came along and chatted with me (at me, actually). I was concentrated on G’s safety, leading an unwilling G back to the sidewalk after each pretend garbage dump, instead of travelling the street like he wanted to, “But I’m a Gahbig Twuck!” Bless her for coming along and trying to have a nice neighborly talk. We’re lucky to have supportive, kind neighbors.
G was potty trained using my “Garbage Out, Garbage In” System(patent pending, all rights reserved, trademark, copyright, pinky swear, cross my heart, etc.) LOL. After 2 years of failed Potty Training schemes, I scoured every department store toy aisle and toy store in a 30 mile radius and bought a few Hot Wheels/Matchbox special edition $5 GT jobbies, bought a few from Ebay (shout out to the nice toy dealer in Ohio who threw in a few extras that he found at a toy show). I put them and a few other cool treasures into an large empty clear pretzel bin. I displayed it prominently, talked it up, and began giving him his choice each time he went potty with no accident Yup, he got big $3-$5 prizes – several the first day, but he was trained in a few days. I gave him LOTS of H2O to drink. I got a Bruder truck catalog and let him peruse it while on the potty with a promise of getting one when he went 1 week with no accidents, pee and poop. Sure enough, we made a big ordeal out of our trip to the toy store, got it wrapped beautifully (only available at pricey posh stores = free wrap) just so he could rip it open in the car on the way home and push all the buttons. Worked, as nothing else had worked just in time for his 4th birthday….what a long haul…pun totally intended.
I used to print off GT line drawings from the web for him to color. He wanted dozens, and would scribble them all green and hang them everywhere. He constantly wanted his big bro N to draw them for him. G has never liked drawing or writing until this year. Handwriting OT finally sunk in enough to motivate him and get him comfortable writing (not well, but that will come). His first drawing – not people or houses or animals or cars like most kids start out with. A Garbage Truck. With Garbage Cans and recycling bins. Of course he included the big WM (Waste Management) logo on the side, his fave.
I could write a full book just on G’s obsession with Garbage Trucks (I capitalize because we hold them in such reverence at our home). Friends and neighbors tell him that they think of G every time they see a garbage truck. Cute or ick? I wouldn’t say I embrace it, but I just have to accept it. Hooray for garbage!
Garbage Trucks Galore: Toys, fun books, DVD’s, wooden model build-it kits by Melissa and Doug
Autism, AD/HD...Meet your friends: OCD -Obsessive Compulsive Disorder, TS - Tourette's Syndrome, Anxiety. They’ve been hiding, lurking in shadows, waiting to pop out when we least expect it. When we let our guard down, basking in our achievements and moving towards further progress. Boo! We’re baaaaaack! You’ve met them before, we thought they were just casual friends we knew a long time ago. But now they've returned for an extended visit like an unwelcome relative. Yikes! Yup, G's newly renovated space has been invaded (so by default, our family too).
Eek! At our last med check, I was blindsided emotionally by the additional Dx's, though I knew intellectually, and from recent research/googling tics and side effects of meds. No doubts, no easy solutions. G’s MD softened the blow by saying, G’s not classically autistic, but high functioning. He’s OCD, but not all-consuming, life-inhibiting (yet). He’s Tourette’s, but not obscene or disturbing. ADHD meds have highlighted (stimulants - stimulated) our hiding friends, causing them to appear en force. No subtle sneaking in, but a wild cacophony of a crash landing. But thinking back, looking at my reams of paperwork, they were there all along. Now that G can stop, think, focus - he's over-focused. So much that he's/we're at our wit's end. Tourette's (vocal and physical repetitive behaviors) bothered us all so much that I reported his behaviors to his MD to see if we could find an instant fix. We’re trying new meds for G and now the OCD is bothering us so much that we hardly notice the Tourette's.
We're on a wild roller-coaster...a manic ride complete with thrills, screams, nausea, head rush, headaches, begging, arm waving, eyes shut tight, teeth clenching laughs and tears.
This can't be happening, I haven't finished my readings on autism! I’m only beginning to grasp AD/HD. Sigh. If only it were this simple. I'd laugh, but I'm too busy researching (and writing partial blogs). C'mon, God(dess) of Autism: we were just making headway on social stories and safety issues! Sometimes it seems no 2 days are alike. We seem to drown in the sea of alphabet soup that was once my miracle baby boy with the shining smile, bright eyes and gorgeous blonde ringlets. Where G used to want to do, go - moving in obsessive sensory-seeking mode, or conversely to hide and avoid certain sensory stimuli - he now has objects and rituals to protect his sensitive psyche. Is this progress? Surely it doesn’t feel like it. These OCD manifestations just break my heart. Painful to the core. He gets anxious, intent that he MUST have some obscure thing a particular way. He cries, whines, repeats the question, paces, throws tantrums, follows us around. Talks to himself (that's entirely new, I don't like it).
I've started and abandoned several unfinished posts in the past few months. Some elated posts about our long avoided, newfound miracle of pharmacotherapy: ADHD meds (cue Alleluia choir!).
Others posts wondering, speculating, more research. Others about my quest for help with his kindergarten IEP. I'm breaking the cycle of leaving them unpublished. It seems I can’t publish, can’t call a friend, if I can’t make a positive out of a negative. I strive to find a way to spin the truth into hope. Truth is, at times I’m so bewildered, so exhausted from coping that I just CAN’T spin cheer. I must learn to give up and share. This is about truth, not about being a happy mom.
I'll return to the many posts I’ve begun and try to glean some understanding of this slippery slope. We will not, can NOT give up G's focus and attention. He's begun to spring forth and show personality, buried thoughts and knowledge that were hidden beneath his fight or flight sensory system. The first day the meds worked he began citing mathematic equations in the car! Simple addition, but better than Garbage Truck talk for sure! That week he began reading. Real, sound it out, beginning reading. He knew all along. He began performing better at sports, showing an incredible stamina and drive to succeed in Taekwondo, basketball, swimming, now bicycling. What else is G hiding in that wondrous mind? We look forward to finding out as we try to lessen his anxiety, his obsessions, his tics.
Sensory Situations stink. And echo. And push. And spin. And kick. And whine. And screech. And run. And hide. And hit. And bite.
But not this weekend. I'm so proud of my G for holding it together with so much sensory overload this weekend. What a trooper! Fireworks, party with lots of friends, family. Lots of food, sweets, bonfire, swimming in a deep pool, boating, tubing for the first time (with his sister, slowly), swimming in a lake with deep brown water, waterskiing show, more fireworks. Giant shout out to his siblings, who provided G with oodles of support. Love those kids! Proud of them all!
My G fell asleep in the car last night, first time in I can' t even recall how long. So unusual- he can be sleeping at Grandma's or wherever - but wakes up the second we put him in the car and jibber jabbers away, the whole way home. Most kids, even my 11 and 12 year old, fall asleep easily in the car. G perks up, another puzzle piece.
Today he woke me at 7 to say, "Mom, I'm about to puke," and did. He got it out over the next hour, then was as good as new, bouncing around and mishief-making. This afternoon he took a long nap, another oddity. He's not sick, as far as I can tell, it could possibly be somthing he ate. But honestly, I think it's his nerves/anxiety. He's holding himself together, working so hard to not freak out, that he sort of collapses when he can. I think his vomiting is from nerves.
I hope that I'm wrong. As much as I want him to self-regulate I don't wish him anxiety, worry or fear.
I'm seeing a trend of those emotions lately with him; an over-serious, somber, worrywort and apologetic side.
Another set of worries to keep my eye on. The worries rarely come alone these days, always they seem a house of cards, or a which one has more pros than cons scenario. I like G's compliance to rules, increased attention and awareness - but don't want him to stifle it inside. No stress for my little silly, bouyant 5.5 year old. He's got way too many hurdles to jump simply making it through a mundane day. Nothing is mundane for our sensory-sensitive kiddos. If you're not familiar with sensory issues, watch Temple Grandin's movie ( on DVD). The one that took so many oscars last year. Besides an incredible portrayal of sensory, social and flat speech manners, it's an amazing film to boot.
No worries, G. We've got your back. For always and forever.
Thanks to PEAC (Programs to Educate All Cyclists), my G is learning to ride a bike at his own pace. I'd given up a weeks ago, introducing the idea every few days, but I didn't have much hope for success. I've tried to get him bicycling time and again, but he always goes for the scooter toys (my nickname for him is Scooter). To motivate him, last year I even let him pick out a brand new bike in his favorite color. The training wheels kept getting wonky, causing him to fall. He had difficulty with the concept of pedalling, doing so backward which of course stopped him. He then had a really hard time getting going, so I'd push-start him every 5 feet. We tried family rides, but I had to abandon my bike to help him out. The other kids would be a block+ ahead - and bless them - they'd wait patiently until I would call out to move on. Impulsivity and distractedness was a problem for G last year. He'd stop and examine every little object of interest. Typical of autism, he was more interested in the parts than the function. He loves to flip it over to spin the wheels, or tooting the horn, and revving the vroom vroom tachometer on the handle. Basically, he wasn't motivated. I never figured out if it was because he couldn't, or just wasn't ready. This year he took an interest in his big bro's Razor scooter, so I gave in and ordered one for him in his favorite color. He rides that around expertly, which I believe has contributed to his confidence. But still, his neon green bike sat waiting.
So when I learned about PEAC bike program through a presentation at Autism Collaborative Center, I knew it would be perfect for G. PEAC helps individuals with cognitive, physical, and emotional disabilities reach their cycling goals (and much, much more - follow link). This week was his 1st week of their 7 week summer program, his "Assessment" appointment. They truly worked with him from the ground up, they work to the child's level and needs, often just putting on a helmet or simply touching the bike is the goal. Their methodology is so cool: with G they started him walking the bike: sitting on the seat, minus pedals, so it was less awkward. Next they had him push off, scoot, push, scoot, etc. I never would have thought to have him practice this way, getting a feel for the bike, balancing skills, and just teaching "where the ground is" helped to take the fear/intimidation factor out.
They put the pedals back on the bike when he agreed that he was up for the challenge, ready to ride. The instructor walked/ran next to the bike, holding him to keep him upright and moving. G's balance is terrible, so that guidance is important. At the session's end, he rode about 5 feet on his own! Stopping with handbrakes and making turns are going to be a challenge. Balance and spatial awareness are sadly lacking in him. I'd love to get to the point where we can take a family ride and not have to assist him every step (roll) of the way.
I learned that his bike was not a good fit. I brought it along, figuring it would be best to train him on his own bike. They explained that smaller bikes don't give as much leverage as larger bikes do, making them harder to pedal. Also, they discourage training wheels in favor of learning the correct way to balance. After his assessment, the entire ride home he talked about which bike of his big bro's he wanted to ride (we've saved them to hand down to G). It turned out to be a perfect fit, same size that he trained on with PEAC. He wanted to ride right away, but we had sporting events. After the night's activities, we took him to a parking lot to practice. He was so eager to practice and show off his new skills. His face was set in an intense expression of concentration. I had to choke back tears while cheering him on. His big bro N took the place next to him and held his seat (thankfully, because I have back problems). He went on longer jaunts (15 feet or so) on his own, wobbling along, but fiercely determined. When he turned he fell. To stop, he dragged his toes or fell. At one point he turned and kept going, jumping a curb and stopping just before a drop off to a swampy area. Yikes! He rode until sunset. He was thrilled to go back for his PEAC session today, and I was too! :)
PEAC has many adaptive bike styles for use with students' unique needs. G was curious, they let him explore, try to ride, and explained the bikes to him. The instructors were all respectful, patient, encouraging and it was obvious that they love their work. Many of them are college students who are working towards a therapy or special needs degree, so they're well-versed in various needs, behaviors and best practices. As a treat after working him on the 2-wheeled 20" bike, they took him for a ride on a tandem bike. They explained that it teaches pedalling rhythm, balance and the feel of riding well.
I hope that this kind of organization is made available everywhere. What a fun, family-oriented, useful skill to teach. Bike riding uses large muscle groups, making it wonderful sensory input. Best part: the feel of the breeze, speed and freedom are exhilarating.
To read about this amazing program and how it got started, read this article:
First day of Summer vacation: summer camps can’t start soon enough! G has really been affected by our end-of-school change of routine. Actually, no routine. I’m trying to keep some routine and need to develop one quickly because he has regressed terribly. He’s grunting, pointing, screaming and screeching, similar to when he lost his language for awhile at 3. He’s had potty accidents, been OCD to the point of being well, uber annoying. He’s melting down, throwing things, (mis)behaving in a 2 year old style. Oh, pity all the work and struggles to get him beyond all that. I pray this is a temporary glitch, that he will bounce back once we get a summer routine to balance him.
The day after he graduated from preschool, he walked around singing and doing the motions to classroom songs. He headed upstairs for awhile and I heard him in his big brother’s room – he usually plays with his Legos and messes them all up (making N grouchy). I went up with the laundry basket a few minutes later and saw that he had the door shut (a no-no). I opened the door to him sitting on the floor singing and doing motions with a very serious expression, full of purpose. His teachers gave the students a CD of the classroom songs and he had it cranked up. Awwww. At the time I thought it was cute - that he was mourning in his own way. He can’t express that he’ll miss preschool, but he’s bringing it back by listening to his favorite songs.
After several days of meltdowns, screeching, pointing and grunting – my family is just baffled. What is going on with him? We drove to TKD this morning to find it closed – forgetting that they’d changed the schedule for summer. So, we went on to do other errands since we were out and about. He was fine until the grocery store – always a gamble anyway. I tried to keep him happy by sitting him in a spare cart and letting him play itouch games while his patient sister pushed him. Still, he awoke from his reverie several times to create a dramatic scene. Notably on the choice of cereal, ice cream and ice cream cones (extremely important choices of course!). I thought I was going to outsmart the tantrum: I allowed the 3 kids choose their own of each of those items. The one parameter was it had to be on sale. He found that one rule and had to fight it. Screaming like murder and clutching the box he wanted to his chest, he fought. The kids wrestled and struggled with that box, yanking it free to run it down the aisle to put it back , G whining, whimpering, getting it again. Tantrum, wrestle, return, retreive, repeat. Finally G laid on top of the box in the cart. Why? Because the store brand of Lucky Charms didn’t have the circle marshmallow like the name brand does. By gosh, he wanted that circle badly. I quietly slipped the name brand box aside later. We’ll empty the turbo-sized economical version in in our cereal containers, he hopefully won’t remember. We made it through the store. Barely. If the other kids weren’t with me, and excited about the special items they picked out, I’d surely have left with him kicking and screaming.
Tonight after several more meltdowns, I was catching up with my husband while the kids were upstairs preparing for their showers. As usual, G didn’t want to shower, or have anything to do with the process of going to bed. We heard the typical yelling and commotion. Suddenly we heard bonk bonk bonk bonk (about 10) down the stairs. I flew to the steps, already imagining one of them sprawled at the bottom with a broken bone or two. Instead what I found was N’s bowling ball on the landing, still rolling. Of course, G was at the top with a grand grin. The injuries and damage it could have done did not occur to him. It just seemed like a fun thing to do. Or he was mad and then enjoyed the loud crashing it made. We scolded him, lectured a bit on the danger. He didn’t register that he even heard. He cried hysterically 15 minutes later about it.
My epiphany hit me over the head. G’s been reacting to his lack of routine. Regressing, acting out because his body, his world is unkempt, disorganized and he doesn’t know what to expect. What is my problem????? How could I be surprised that he’s having transition difficulties? I just spent months upon months prepping, reading, writing, taking seminars and workshops, talking to advocates about how to fight for an aide for G to transition into kindergarten. I above all, know how hard transitions are for G. I’ve explained/written about it in 100 different ways in my agendas, emails, notes for the meetings. I of course knew this summer would be difficult – G has been extremely routine-driven this year. I preplanned, booked most of his summer with summer camps for that very reason. To give him the structure that he needs. I’ll admit that it’s to wear him out a bit too, for the rest of us.
But alas, I forgot to preplan for this one week off before his camps begin. It took a crashing bowling ball to finally bonk some sense into me. Good thing. Now I can work with him when he acts out, instead of grueling frustration, anger, helplessness and tears (from both of us). I feel pretty foolish, and also sad for him that he can’t verbalize his feelings, his needs. G’s singing school songs was his way of self soothing, a coping mechanism to gain some of his routine. For him, it wasn’t sentimental as I’d thought, but necessary.
Off I go to make up some visual schedules. I’d better hide the bowling ball too…
Here are some sources for visual schedules. If you’re new at this, don’t be overwhelmed. I bought all the supplies and let it sit for 6 months. Finally I picked up a notebook and jotted out quick line drawings to make a simple schedule. As long as the child understands, it doesn’t have to be a masterpiece. Use whatever system works for you. It’s mostly individual for home schedules, just create your own with clip art or stick figures. Or better yet, find a great app.
I couldn’t resist.
It’s all about looking cool, lol. 
It was worth it to see him happy and seated to allow for a quick shower or housework. G quickly learned how to search for vids and save them to favorites for a quick GT fix. Convenient! He was elated to find other kids who had the same love (fixation) as him. There are currently over 1000 GT toy clips on YouTube. Wow, I really outta video G with his fleet. He watches 9 minute videos of kids playing with their GT’s. Some toy trucks make noises, move via batteries, others are totally kid-powered. 
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That week he began reading. Real, sound it out, beginning reading. He knew all along. He began performing better at sports, showing an incredible stamina and drive to succeed in Taekwondo, basketball, swimming, now bicycling. What else is G hiding in that wondrous mind? We look forward to finding out as we try to lessen his anxiety, his obsessions, his tics. 
