Tuesday, August 30, 2011
A Mother's Story of Autism, Unconditional Love and the Meaning of Normal
by Kerry Cohen
Honest, real, tenacious. I feel the raw emotion, worry and frustration plucked straight out of my soul and heart and onto the pages. Autism's rippling effect of disability dis-ables every aspect of family life. Motherhood: protect, serve, anticipate, support, love, research, counsel EVERYONE surrounding the child. Right now, right now, right NOW. Feel guilty for needing, frustrated for wanting, desperate for hope.
Absolutely loved it! Cohen's story and writing resonates to my core.
5 stars out of 5
Interview with Author:
Monday, August 29, 2011
Tuesday, August 23, 2011
What will I do?
My day won’t be punctuated by my son N sneaking up to lean close to my ear and share a LOUD BURRRRRRRRRRRRP.
It’s all about shock value.
He’s so 12.
N with a ooey-gooey glob of caramel on his birthday.
“Look what I found! A illegal feather!!!”, G squealed happily as he jumped up and waved his treasure.
Furrowed brow, I asked, “Why is it illegal?”
G: “It’s FROM illegal!”
Friday, August 19, 2011
“When I lay down, more boogers come into my nose.”
I love that simple “body aware” observation, and that he communicated it so well. He’s becoming more in tune with his body’s feelings and expressing them more frequently.
G’s in touch with his inner boogers! How Oprah.
Go G, booger down!
In case you wonder the same thing (like I did), here’s a simple explanation:
- CT scan of sinus cavities
Sinuses are small airbags, found in the bones of the face. When they cannot drain properly, it is very difficult to breath through your nose. This problem can worsen at night when you lay down. Gravity plays a role in sinus drainage. While in a lying position, the sinuses may drain down the back of your throat, causing irritation. If you lay on one side or the other, the sinuses will drain to that side, making it difficult to breathe through the nose.
Read more: Why Do Noses Get Stuffy at Night? | eHow.com http://www.ehow.com/about_5367310_do-noses-stuffy-night.html#ixzz1VUa6oXcP
Thursday, August 18, 2011
Wednesday, August 17, 2011
When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.
When a friend is in trouble, don't annoy him by asking if there is anything you can do. Think up something appropriate and do it.
Edward W. Howe
Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.
I have friends in overalls whose friendship I would not swap for the favor of the kings of the world.
Thomas A. Edison
It's the friends you can call up at 4 a.m. that matter.
It is not so much our friends' help that helps us, as the confidence of their help.
A hug is like a boomerang - you get it back right away.
Thank you dearest friends, for being there when I need you. I have a difficult time seeking out help. I believe that the biggest misconception is that someone has the ability to reach out when they are deeply troubled. Often it’s this point at which we are most isolated. We wonder who will understand our troubles. My close friends know my incredible strength, know that when I ask for help it must be very very painful. The smallest of gestures can make the difference between despair and hope.
Blessings to you - my family of friends - who came to my side without question or judgment. You are held close to my heart.
Your support means the world to me. YOU mean the world to me. I hope that I may return our beautiful friendship boomerang in YOUR hour of need.
Tuesday, August 16, 2011
He said, "A prisoner!"
"Why, what will you do?"
"I want to be the boss of everything, everywhere!"
I thought for a minute,
"Do you mean the President?"
"Yes, the Prisoner!" He exclaimed.
I hope his kindergarten teacher doesn't ask that
on the 1st day of school...
Saturday, August 13, 2011
Every once in awhile I get caught up in ridiculous “normalism”. That is, thinking in a logical manner or insisting upon something that simply DOES NOT MATTER. I think my brain can only handle so much random, chaos, unknown and “isms” until I crack and hyper-focus on silly mundane points.
My daughter bought a Happy Napper with her allowance money yesterday during our girl’s night out shopping (love to bond with my darling daughter, easy-brightly-smiling-tween and loads of fun). She’s in the funny stage of being too old for some things, yet not for others. I’m thinking these are ok because they’re useful? Who knows. Some of her friends still play with Barbies, so I’m ok with a pillow. I’m in no rush for heels and makeup. So, M picked the pink LadyBug, which she called LoveBug. Later at bedtime I asked her if she’d named it yet, and we set about suggesting names and voting. She decided Lulu the LoveBug was best. Cute!
G had gotten one about a month ago, after begging for one for a couple months. He wore me down (and I must admit they’re cute). See G happily sticking his tongue out like his doggie Happy Napper in the shopping cart after Tae Kwon Do. He tried to slide the gold lion in – hmmm - it mysteriously disappeared. I forget what he named his then, if at all, it was fleeting. He’s not big into personalizing stuffed animals or humanizing (friending) behaviors. Anyway, I asked him what his doggie was named. He said, “LoveBook” (must be what he thought we were saying with M’s "LoveBug”). Picture scrunched brows and quizzical expressions on our faces. I told him that it sounded just like M’s name, and he should make his a different name. He protested, screeched and flapped. But M and I persisted. We kept up with funny suggestions (Herbert, Sailboat, Jaws, Easter Bunny, Shaggy and the like) until he calmed down, laughed and got involved in our discussion. He chose one after we got into more serious “normal” names (we wore him down, lol). His doggie’s name was officially “Spot”. I know, totally unoriginal - but more socially acceptable in my mind than LoveBook (sounds a bit naughty, ewwww). So Spot he was…
…But G showed me up as usual. Silly Mama!
Today I asked them to tell Daddy their Happy Napper names. G exclaimed, “Spotted!"
Hilarious! He puts his G stamp on it always. Gotta love it. This is sure to fall into the ranks of familyisms, those events or terms that aren’t truly understandable or funny until you get the “backstory”.
Spotted he is, dearest G!
If you’re not familiar with Happy Nappers, you must not watch kid’s tv. It’s on every commercial break, I think. The song pops into my head at random times: gas station, bottle returns, mowing lawn. I need a life.
Friday, August 12, 2011
IEPs According to Dr. Suess
BY Cameo Van Zandt
Do you like these IEPs?
I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
we plan, we meet
but nothing ever seems complete.
Would you, could you
like the form?
I do not like the form I see.
Not page 1, not 2, not 3.
a brand new box, I think we all
Have lost our rocks.
Could you all meet here or there?
We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in a hall
There seems to be no space at all.
Would you, could you meet again?
I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk and not at dawn
At 4 p.m. I should be gone.
Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that,
Beware the student’s ad-vo-cat(e).
You do not like them
so you say
Try it again! Try it again!
and then you may.
If you let me be,
I’ll try again
and you will see.
I almost like these IEPs
I think I’ll write 6,003.
And I will practice day and night
Until they say
"You’ve got it right.
By Cameo Van Zandt
Find Cameo on Facebook page,
“You know you’ve got a child with autism when…” https://www.facebook.com/#!/groups/112333318804090/
I tripped over a thrown throw rug (moved to vacuum), and bashed my toe smack(!) into the corner of a kitchen cabinet. I howled quite a bit, and iced it for 5 minutes, then got back to business. As I walked around the library later I felt foolish for limping. What a baby, I thought. I cooked dinner with a minimum of steps in the kitchen, still babying my toe. At the dinner table I slid off my shoes. As I turned to get out of my chair, I noticed my swollen, bruised baby toe. We made a big deal out of how puffy and purple it was and everyone came to see the spectacle of the ugly overblown digit. No wonder I was limping and in pain, I exclaimed.
Later as I went upstairs to supervise evening shower and pajama routine, I noticed my toe had turned much darker, actually black. I saw G and said, “Look G, my toe is getting really dark. Look at my bruise!”
G looked at my toe, and quick as lightning, stomped on it, and turned to run into the bathroom. What? It was so quick I wondered for a split second if it really happened. My brain rushed to take in all the information: serious expression, not playful. Not scared, he’d seen it earlier. Not mad, he was in great spirits.
Simultaneously, I yelped very loudly, as you can imagine.
G’s reaction was just as surreal as his action. He ran to the stair top to yell, “It’s ok, I jumped on Mom’s toe. It’s my fault. It’s ok, everyone!” Our stairs are in the middle of our 2 story entryway, and we frequently yell out from there to someone on the 1st floor. We were all on the 2nd floor, which he knew. There was no reason to yell there because we were all within earshot of my LOUD cries.
I asked G, exasperated and frustrated, “Why did you do that? What made you do that?”
“I don’t know.”
Neither do I. How to figure this one out? How to not worry that he might do that to someone else some day. How to figure out how to explain it when he clearly did it as an impulse reaction. I’ll revisit it, try to work it into a learning experience of how to be gentle and loving when someone is hurt, which of course he already knows and practices. What made this scenario different?
I’m baffled. Some actions and behaviors are not going to fit into a neat box. Try as I may, logic and predictability often do not dictate G’s behavior or instincts. They can’t be explained. I must give it up, quash my curiosity and use that energy towards preventing it from happening again. My sweet G would not hurt a thing intentionally.
I’d so love a G user manual, preferably one that includes social stories for G’s triple-cracked, always-on-broken-power-switch itouch (I don’t know how it’s working, a true miracle!). With full body armor and Motrin for me. An aide, housekeeper, laundress and masseuse would work quite nicely too. I’ll cook, mama-taxi, give G play therapy. Oops- now I’m in la-la land. Dreams are free!
I’ll settle for assurance that he won’t do this to anyone else, never hurt anyone. Remotely.
On the plus side, purple is my most favorite color. I didn’t take photos, but after our little incident, my toe took on a horribly dark eggplant hue and a red circle formed at the base of the toe. I got an exam/xray to check if it was shattered. It’s fine, just a simple break. This photo is 2 days after, still wearing flip flops, no limping. Too late, I ‘d already finished, G wanted me to wear purple nail polish because it would look “very beautiful with my purple toe”.
Thursday, August 11, 2011
My 12 year old N took a big wipeout on his bike yesterday, I didn't even know about it for 10 minutes. I iced it when we got home, but it still looked horrible hours later when I checked it while he was sleeping, 2 huge scrapes and a large bump on his tender calf.
Today he wiped out on blacktop while we were at PEAC for G's final summer bike program. He was acting quick to avoid hitting G who cut him off, and wiped out himself. Nice big bro! About halfway to getting him cleaned up and bandaged, it occurred to me...
He didn't cry. My little boy (always a baby to mama!) is too grown up to cry anymore. It kinda makes me sad.
Thankfully he's not too old to hug, or tickle. In fact, the most delightful sound ever is his giggle when he's tickled. It sounds identical to when he was an itty bitty baby. I can't hear it without giggling myself. I hope he keeps his giggle.
Sunday, August 7, 2011
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
- Look-at-me-having-fun-are you-jealous self portraitist
- “friend” that you really can’t stand but “friend-ed” because they’re your friend’s friend
- friend’s friend who has the same zany sense of humor so you “friend-ed” but haven’t met
- funny faraway friend whose entire family can hang a spoon from their noses
- former neighbor with sizzling pole dance instructor career
- cousin-in-law’s neighbor’s job share partner who has a child with autism
- Under-employed friend with 3K+ fb “friends” who proclaims, “I’m never on facebook”
- magnificent muralist
- party-like-a-rockstar recruiter
- Crush from 80’s,+ his charming gay partner
- ex-fiance's failed 12-step program sponsor
- groovin’ world music radio host
- pimply kid from middle school voted most likely to get into a pyramid scheme
- White Rain big hair babe from middle school
- super-fine “party in the back” mullet dude from high school
- hippie chick who spent 1980-83 stoned
- quarter-bounce/euchre HS primo hostess
- fellow alumnus who admitted he doesn’t recall much from college (including you)
- dental hygienist who suggested laughing gas because “it’s better than sex”
- friend’s illegitimate daughter’s illegitimate child’s estranged baby-daddy
- 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!
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.
Thursday, August 4, 2011
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.
Love it! Welcome to my new segment. Do you have a daily-ism to share? Share it!
Wednesday, August 3, 2011
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?
Tuesday, August 2, 2011
Huge Strides for Autism Wandering Awareness
A new medical code takes aim at a behavior that puts kids at risk, parents on high alert http://www.childmind.org/en/posts/articles/2011-7-27-autism-and-wandering-risk-kids-worry-parents
More about what the new wandering diagnostic code will achieve: http://www.ageofautism.com/2011/03/keep-americans-with-autism-safe-from-wandering-related-injuries-and-death.html
Great video discussing the recent efforts to raise awareness about Autism Safety and Wandering:
IAN Project Preliminary Findings on Autism-Related Wandering:
Chasing G: Struggles with Our Runner
What do you call yours?
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:
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 #.
If nonverbal, use id card or id product, such as:
Helpful safety resources:
Additional Information and Help for Autism Wandering and Elopement