While other families head for sunny, thrilling advetures on spring break, we found our little corner of paradise 2 hours from home. Extenuating circumstances threatened to extinguish our hopeful retreat, but we finally made it. We enjoyed our goofy private time in an impressive sleek new hotel, free courtesy of hotel points from business trips. Will update with photos, details and review when I get a chance.
Saturday, April 7, 2012
Simon Sez: I love my 1 in 54!
 |
| http://www.cafepress.com/+i_am_more_than_autism_womens_dark_tshirt,521158944 |
1 in 88
1 in 54 boys
I was thrilled to get the chance to pass through the tail end of Catherine Lord's extraordinary works at University of Michigan's Autism Center. I hope that our strange/sci-fi exams and technology they indulged us in and day long adventure helps to shed some light on a trend or rule something out. It's all about the #'s of course. http://ns.umich.edu/new/releases/3085
http://www.cafepress.com/+autism_tree_womens_dark_tshirt,521386340We took part in the Simons Simplex study, with samples taken at a few prominent universities studying our favorite subject, our "A" word. Near and dear to someone reading this, likely. Autism genetic+ study, behavioral, all-possible records they can get, psyche/IQ fresh assessments /reports, parental forms in the dozens of pages for each booklet (about 10-15 on average). Added to it were impressive 3D facial mapping for Scooter, measured our feet via gazillion different angles, etc. We ate gigantic breakfast lunches at Angelo's across from UM hospital, home of the famed cinnamon french toast. Got it, of course! Nickerdoodle was in heaven. They really put us through the workout at the last part: we traversed the entire hospital (it seemed) partly outside on a pouring gloom-rainy day to give numerous vials of blood each. We passed physiology labs and smelled formaldehyde and all. Passed bright creative young minds with their futures full on forward. College town home town energy. What's not to love?
I'm so thrilled to try anything to advance this soaring epidemic. It gives me a shiver, terrifies me to think of our children being affected by something under our eyes. We can't give into this madness! I implore all to forge ahead to learn as much as we can. Spread the word and share the awareness signs. 1 in 54 boys is just not a good direction to take this in. 1 in 88 population. Available on every news source last week, when my magnificent Michigan got Autism Medical Coverage bills passed. Woot! If this works well is yet to be seen. Immediate to be felt as all touched as a boon, a tiny feather in our colorful morphing spectral cap. Forward, just keep swimming as Dory says. Superb, sublimely simple quote I love to use often.
Balance the bad news with the good news. I'm really hoping that less families must question and seek help for ASD Autism Spectrum family support. To often, families like mine and so many others are shoved aside; not claimed or paid by any means. Left to stumble through the confusion, shame; stress on marriage, finance, health. Without a doubt a mammoth strain on family infrastructure.
is a complex
(ie: nervous system)
disorder!
This is not psychology,
but mind/body processing
and re-routing synapses.
We can help our kiddos to function.
Early Intervention is
BEST!
Don't wait.
Frankly, I'm fascinated,
saddened, angered
at Autism's upward
rocketing..
Danger Will Robinson!
(Spoken in my mind in G's adorable
speech impediment.)
I'd like to think someday soon we'll look back on this scare with the sense of "chagrin" that we could have been entirely ignorant of some seemingly innocuous additive or gene play that was causing our colossal calamity.
IAN Community has become a processing referral center for autism research. I participated in he wandering/elopement study because I was surprised to find it a common issue. I'd never heard about wandering and bolting into traffic like Scooter did. I was relieved that it wasn't intellectual, but sensory-induced. Terrifying stats on their results: half of autism spectrum children wander in public spaces.
Best of luck and prayers to the global geniuses/researchers.
Parents and caregivers.
Parents and caregivers.
Power to you, to us all.
Send any interesting studies my way. I'm in, we're in.
Always seeking.
Autism pique-ing.
Wednesday, April 4, 2012
Tick-Tock Tics
Tonight...
Whimper, whimper.
"I just can't get the numbers out of my head."
No explanation needed. I grabbed his Kindle Fire that I haven't yet mastered, and searched out Countdown and Stop Watch apps. This will help our lives immensely. My Scooter asks about time incessantly: how long until, how long will it take. How many seconds is the standard in the car. Long trips test my decades-old triple+ place value math-in-my-head skills. I'll need to show him a calculator app to track his own seconds.
He said in an incredulous voice later, "I can't believe it. My own countdown app. I love it."
He could not have been happier if I'd given him a winning MegaMillions $640 mil ticket. Ok, exaggeration...but you get it if you have an OCD kiddo.
Melt. My. Heart. I love it too, my sweetiepie. I've been planning to search it out for awhile, but always get sucked into finding games for him instead. Go figure.
I'm incredibly impressed that Scooter's beginning to verbalize his anxiety and know what he needs. My teen doesn't know that skill; hey I don't some days (other days I say it a wee bit too loudly). ;O We've come soooooo far. So glad to find something to put your order on our busy world, in your language. In fact, everyone who jumps in our car will be happier. ;D
I'll update later with the winner that works best for the counting OCD behavior.
Awareness Inspiration
 |
Christopher Robin to Winnie the Pooh ~A.A. Milne |
I needed a bit of a soul soother tonight. In searching through my cache of personal inspiration files, I found this poem. So perfect for tonight. We speak a common language of mothering our special needs kiddos. I hope this gem finds and warms another's heart as it has mine.
Thank you you April Vernon, I look forward to exploring your blog further.
 |
| Link to April Vernon's Blog |
April Vernon wrote an inspiring article about her experience as new mom of sweet down syndrome son, Levi. She didn't wait for answers, she forged ahead and got early intervention.
My kinda gal!
Her story: http://secondtimearound-vernyvern.blogspot.com/2011/04/my-article-published.html
Her story: http://secondtimearound-vernyvern.blogspot.com/2011/04/my-article-published.html
Get inspired, do the best you can, special needs parents.
Remember to:
Put on your own
oxygen mask
first!
Our kids are counting on us.
Sunday, April 1, 2012
April Fool's!
Originally published April 1, 2012.
I'm waaaaay past sarcasm. Proactive activity rules my world, kids still rock my world.
Guess what? April Fool's to us! Scooter isn't autistic after all! ;~/ I'd like to share the fantastic news with some of those who helped us along our terrifying journey of discovery and knowledge.
Dear award-winning pediatrican group in a prominent college town,
Thank you for holding my hand with warmth and concern when my son was young and I questioned his development appointment after appointment. It turns out all 6 of you were right! He really is just an active boy who will settle down in time. Boys do develop slower than girls, especially in speech and behavior. His motor skills would strengthen by doing the 2 basic activities you mentioned. And yes, he did look at you briefly when you said his name! I understand your refusal to do further testing to promote early intervention. Waiting until his rapid developmental toddler years flushed out his worrisome behaviors was a much better approach. I tried not to read all that scary information on the internet that angers you so. I know that if it was you you'd just sit around and wait for the experts to inform you of your child's troubles. Boys don't communicate as well and often take risks.
I guess I was just paranoid because from day one of my pregnancy your local sister ob/gyn group warned me nonstop about the high risks associated with older 40+ pregnant woman. All those statistics, articles, lectures were wrong about the dramatic increase of birth defects with older mothers. I'm so glad that I didn't let them perform all those intrusive, risky tests. The precautions I took coming in twice weekly to monitor his development must have worked, so really - why bother checking his performance after birth?
I also appreciate how you ignored the way Scooter always ran up and down your hallway, opening doors to see other patients. He's really just a caring soul who wanted to see why the babies were crying. All those babies in the waiting room must have been hungry or crabby when he poked their eyes or took off their little caps before I could reach him. He is a bright curious boy. I tried to console the children that he took toys and trucks from, and unthinkingly pushed out of the way from his play routine - it must have been their nap time. Anyway, I just wanted to offer my sincerest gratitude for placating me and offering the finiest in quality pediatric healthcare during my difficult time as a new parent.
I also appreciate how you ignored the way Scooter always ran up and down your hallway, opening doors to see other patients. He's really just a caring soul who wanted to see why the babies were crying. All those babies in the waiting room must have been hungry or crabby when he poked their eyes or took off their little caps before I could reach him. He is a bright curious boy. I tried to console the children that he took toys and trucks from, and unthinkingly pushed out of the way from his play routine - it must have been their nap time. Anyway, I just wanted to offer my sincerest gratitude for placating me and offering the finiest in quality pediatric healthcare during my difficult time as a new parent.
Dear numerous pediatric psychiatrists, psychologists that I contacted via phone,
Like our pediatrician group, your shared the belief that children really don't need evaluating until they are kindergarten age. I appreciate you discouraging me from my worry by giving me prices and breakdowns of the many appointments we'd need. It helped me to realize that despite the professional directives advocating for early intervention, most children don't get evaluated until they pass the stages of development that could be subject to varied degrees of normal. Each of his behaviors could be attributed to growth stages. All kids go through stages that appear unusual, but of course I'd forgotten in the 5 years since my other 2 children were babies. I considered listening to your advice, but finally had to set my worries to rest and get him evaluated after he lost his speech and started punching and kicking me, then his big sister. And of course there was the running into the street or parking lot the hundreds of times, and getting lost in public. But of course you knew, because I'd told you all of these concerns.
What you didn't tell me was that each of these behaviors was listed in the standardized ADOS Autism Screening test. In fact, in the huge hours-long, 100+ question booklet interview, Scooter had 3 ASD behaviors that didn't apply and that he didn't do. So he must not be ASD, simply developing differently or perhaps had some sensory and communication issues.
What you didn't tell me was that each of these behaviors was listed in the standardized ADOS Autism Screening test. In fact, in the huge hours-long, 100+ question booklet interview, Scooter had 3 ASD behaviors that didn't apply and that he didn't do. So he must not be ASD, simply developing differently or perhaps had some sensory and communication issues.
Dear strangers, well-meaning friends and relatives,
Thanks for your patience with a paranoid mom and her active son. It turns out he is just like his dad's side of the family who are hyperactive, never-sit-still kind of go-getters. And like I heard so often, Einstein didn't talk until he was 4, or was it 6? In fact, I have read statistics on how many autistics are brilliant, savant-like geniuses like RainMan. Gosh I hope we're in that 10%. Yup, that's all.
Thanks to all who pulled together at group activities and took care of my other kids while I frantically chased Scooter. You have no idea what a comfort it was to me to know my other kids were safe and having fun when you stepped in. Thanks for making it a joke to him by asking, "Are you hiding from your mom again?" with a grin. I loved chasing him and needed the exercise of course. Oh how I laughed and laughed when so many suggested an invisible fence with a handheld zapper for him, I don't know WHY they haven't invented it yet. Or wait, isn't that a Tazer?
I felt wonderful knowing I had your support when discussing his issues brought stories of your children's similar mischievous escapades, or rolled eyes when I got too worked up/choked up, smiling knowingly at each other as I blew things out of proportion. Labelled an over-sensitive Drama Mama. I didn't need a friendly hug, I needed to see that "all families have their issues". It helped to give me a reality check! My older two children totally spoiled me because they were easy babies, toddlers, preschoolers. I finally got a child who wasn't a perfectly behaved angel! Oh, so this is how parenting is supposed to be. Besides, as many of you told me: as my first, my only biological child, I was more prone to worry and search for problems, to care more about his development. He was my only "real" child, even though we adopted our others at birth, it simply wasn't the same. I couldn't possibly adore them as my own.*
*Nickerdoodle and Chickie: Oh, how very, very much I do adore every moment of your lives, my beautiful gifts from God! You are all my sunshine and reasons for my joy! G is our "bonus round". after a perfectly complete family. <3
Thanks to all who pulled together at group activities and took care of my other kids while I frantically chased Scooter. You have no idea what a comfort it was to me to know my other kids were safe and having fun when you stepped in. Thanks for making it a joke to him by asking, "Are you hiding from your mom again?" with a grin. I loved chasing him and needed the exercise of course. Oh how I laughed and laughed when so many suggested an invisible fence with a handheld zapper for him, I don't know WHY they haven't invented it yet. Or wait, isn't that a Tazer?
I felt wonderful knowing I had your support when discussing his issues brought stories of your children's similar mischievous escapades, or rolled eyes when I got too worked up/choked up, smiling knowingly at each other as I blew things out of proportion. Labelled an over-sensitive Drama Mama. I didn't need a friendly hug, I needed to see that "all families have their issues". It helped to give me a reality check! My older two children totally spoiled me because they were easy babies, toddlers, preschoolers. I finally got a child who wasn't a perfectly behaved angel! Oh, so this is how parenting is supposed to be. Besides, as many of you told me: as my first, my only biological child, I was more prone to worry and search for problems, to care more about his development. He was my only "real" child, even though we adopted our others at birth, it simply wasn't the same. I couldn't possibly adore them as my own.*
*Nickerdoodle and Chickie: Oh, how very, very much I do adore every moment of your lives, my beautiful gifts from God! You are all my sunshine and reasons for my joy! G is our "bonus round". after a perfectly complete family. <3
I especially want to thank the close friend who helped me one day after my teary, breathless, frantic frightened outpouring about Scooter's frustrating behaviors, screeching cries, roughness and non-stop destruction. It helped me so much when you matter-of-factly told me, "Well, he's not a monster!" It was a great wake up call because I could have gone down the path of mistakenly thinking he was. Duh. Like I really give out those vibes in my weary desperation. I love friends who understand. To her benefit, I don't complain to NT parents much. She probably got smacked with too much reality.
Dear Christian Preschool Teachers,
Thanks so much for your kind, patient ways with my beloved son. I realize he had potty issues and he would pee or poop daily while in your class. I thank you for not wanting to take part in positive supports because he needed to learn like everyone else and was supposed to before entering your school. We really don't know why he took a backslide under your tender Christian care. I loved hanging around to wait for your call so that I could change him, with you tsk-tsking and reminding me to take his soiled diapers with me (like I ever would leave them?), in front of other parents. Your frank approach was just what I needed, and what my special needs son needed.
I particularly appreciated the way you finally called in an exasperated tone and asked me to meet formally. I was certain that this time when I asked if he was kicked out you'd say YES! instead of the usual, "not yet" with a smug look. Your no-holds-barred approach was helpful. It was great to know that you'd all gotten together to discuss his problems at length without me. The itemized list you recited without pause for me to question, to understand, to digest - just perfect and very helpful that it was scrawled on a scrap of paper so that I couldn't review it later when I wasn't under duress. I knew that you had a strict timeline of 10 minutes to educate me on my son. I was grateful when my tears flowed that you yelled out from your seat through the open door for someone to bring Mrs. Perky some tissues, disturbing the quiet classroom. I really didn't want comfort or kind words, it would only make me weep and you instinctively knew this somehow. It was a bit embarrassing to emerge teary and blotchy at pick up time, with questioning stares. But, it did get Scooter to recognize my tears and sadness, a social skill that he usually doesn't have. He even offered me tissues as I sobbed in the parking lot.
April Fool's! We wear our Autism Awareness with pride and love. My goal is to spread awareness so that others don't have these hurtful, terrifying experiences. Parenting is difficult enough. Autism is over the top. Trust yourself, facts/statistics/warning signs, know your children, and
Don't ignore your instincts!
I have so many other helpful individuals/professionals to sarcastially "thank", but I must go. I need to purchase my blue light to proudly display in my porch lights on April 2. I need to get back to my positive works promoting awareness, acceptance and support for families affected by autism. I need to nurture our relationships with caring friends, relatives and professionals who have helped prop us up in this journey. I need to pull my family close and proclaim a GH, where we all huddle together in a GROUP HUG!
Monday, March 26, 2012
Processing Trouble
"Mom, can I have a zip?"
"Sure, are you having trouble with your pants?" Bending down.
"NO! I want a ZIP!" Shooing my hand away.
"Where?" Looking him over.
"There!" Pointing to table.
??? Scrunchy confused face.
"There! I want a zip! A zip, a zip, a ZIP!"
He walked over, grabbed my Coke Zero, and opened it. As I began to say no, it hit me over the head. He wants a "sip" of my pop!
Duh. Mom has processing issues.
Tuesday, February 28, 2012
Tears of Joy for My Boy
As I've realized many times before in this autism warp, we forget what we're missing until it knocks us over the head. Scooter had a milestone moment today, one that I had given up to autism puzzle, to prayer, to hope.
What that means to HIM:
He's progressing in
What this means to me:
He and his big bro Nickerdoodle were taunting each other with typical brotherly love such as, "He won't share!" "He said I'm a monster!" He won't let me be the monster" "He said I could have a turn and then he wouldn't and that's when I came in here and then he tripped me and wouldn't give me the remote."
Followed by my random response, "Be nice, work it out, take turns, remember to set a good example - both of you!" Lather. Rinse. Repeat until they play nice or one of us has meltdown.
Today Nickerdoodle countered an argument with a remark towards Scooter,"You don't even know how it works."
Silence.
We looked over to Scooter standing there with a full on frown, quivering bottom lip (Awwwwww!) and tears welling up in his eyes. Sounds simple, typical. It was, but not typical Scooter.
While this may not sound extraordinary to most parents, it blew me out of the water! Simultaneously, Chickie and I ran to him and hugged him. We both knew that this was not a typical Scooter reaction. I'm not sure she fully "got" the moment, but she said that she knew he didn't get that sad face cry that way.
We looked over to Scooter standing there with a full on frown, quivering bottom lip (Awwwwww!) and tears welling up in his eyes. Sounds simple, typical. It was, but not typical Scooter.
While this may not sound extraordinary to most parents, it blew me out of the water! Simultaneously, Chickie and I ran to him and hugged him. We both knew that this was not a typical Scooter reaction. I'm not sure she fully "got" the moment, but she said that she knew he didn't get that sad face cry that way.
What I saw, for the first time:
- Scooter's feelings got hurt
- This means he's relating closely enough to get the embarassed feeling that personal interaction brings on
- He was disappointed without
- frustration
- anger
- aggression
- screeching
- whining
- checking out
- pretending it didn't happen
- His response was typical and socially acceptable
What that means to HIM:
He's progressing in
- logic and cause/effect
- body awareness
- interpersonal dynamics
- emotion recognition: expression, tone of voice,
- anger management
- self regulation
- appropriate reaction/response
What this means to me:
Communication may become simpler
Cause/Effect logic may be possible
Hope for self awareness, self regulation, self-control, emotions, friends, teamwork, middle school, high school, college, employment, love, marriage, grandkids, eeek! Too far. ... teehee
I could go into all the Psychobabble, OT speak, Social Skills, Speech lingo to analyze the spit out of it, ... (yawn)
...suffice it to say, I've never felt more happy to see anyone unhappy!
We've been seeing some incredibly positive strides lately. I'm proud always.
But...
The dream, the hope that all mothers have, is for her child to have love in their life. We are a huggy family who showers each other with love. I want HIM to feel love, feel the emotion. I want
HIM to be able to figure out emotions. I want him to be expressive and sincere. I've imagined a future of him saying things, doing things - going through the motions for relationships because rote responses that we and society drill into him. I'd love for his emotional life to be free and sincere. It just may be.
But I suppose I'm getting ahead of myself, and him. See what I've made of a few tears and a trembling lip? A swelled proud, bursting heart full of hope for my Scooter. He's got two wonderful behavior models with Chickie and Nickerdodle.
HIM to be able to figure out emotions. I want him to be expressive and sincere. I've imagined a future of him saying things, doing things - going through the motions for relationships because rote responses that we and society drill into him. I'd love for his emotional life to be free and sincere. It just may be.
But I suppose I'm getting ahead of myself, and him. See what I've made of a few tears and a trembling lip? A swelled proud, bursting heart full of hope for my Scooter. He's got two wonderful behavior models with Chickie and Nickerdodle.
Wednesday, February 22, 2012
Expression: Let's Get to the Bottom of This
Note to Scooter's Social Skills therapist:
Can we discuss how to stop him*
from publicly announcing,
"Smuuuushy butt!"
as he pokes mine?
*use positive supports for redirection, at least to someone else's behind.
and
and
NO! I will not pose for a social story picture.
Teehee! :)
Teehee! :)
I suppose I should be relieved at his choice of adjectives.
Gotta love Expressive Language!
Follow-up note to self:
1)
Double up on
Buns of Steel
workout!
2)
Nurture
sense of humor
and
seek therapy immediately.
Nurture
sense of humor
and
seek therapy immediately.
Tuesday, January 31, 2012
Sippy-de-do-da
.. |
| Sippy? |
"One sippy
Two sippy
Three Sippy
GO!"
I was sure of his words, but couldn't figure out his meaning. Chickie and I checked each other's faces to see if we "got it". Nope. No clue. Next game, I asked him to count down again, giving Chickie the "Ready? Pay attention." look.
Scooter began,
"One sippy
Scooter began,
"One sippy
Two sippy..."
"Wait!" I interrupted. "What are you saying? One sippy??? Count again sweetie."
Exasperated, Scooter enunciated each word and spoke s l o w l y.
"One and a sippy
"One and a sippy
Two and a sippy
Three and a sippy!"
Chickie and I stared at him, then shifted to each other for a few bewildered seconds. Click! Her light bulb went off...
 |
| Chickie Walks On Water (cool shot, huh?) |
"Ohhhhh!!!
One Mississippi,
One Mississippi,
Two Mississippi
Three Mississippi!!!"
Hilarious!
"You say Mississippi after the numbers to count slower," Chickie explained.
I love it when the kids explain something to me that I know from my own childhood. I try act like I'm amazed to be filled in, but often my grin gives me away. I'm so transparent.
Chickie's the finest G-translator besides me. But even better, she's our G-Whisperer. They adore each other and it warms my heart to the core. She's always shared a sweet bond with NickerDoodle. They're best friends. She's the glue that holds these boys of ours together...and frequently me. We're blessed. I'd be lost without my incredible Chickie. Love love love her!
Hilarious!
"You say Mississippi after the numbers to count slower," Chickie explained.
I love it when the kids explain something to me that I know from my own childhood. I try act like I'm amazed to be filled in, but often my grin gives me away. I'm so transparent.
Chickie's the finest G-translator besides me. But even better, she's our G-Whisperer. They adore each other and it warms my heart to the core. She's always shared a sweet bond with NickerDoodle. They're best friends. She's the glue that holds these boys of ours together...and frequently me. We're blessed. I'd be lost without my incredible Chickie. Love love love her!
 |
| Kiddos Monkeying Around at Their Favorite Playground |
 |
| Wig Out - A Family Favorite Game |
Read my review: http://www.amazon.com/review/R11Z5RX5JWWUU8/ref=cm_cr_pr_perm?ie=UTF8&ASIN=B000B5MULG&nodeID=&tag=&linkCode=
Gamewright has tons of fun, creative award winning games.
http://www.gamewright.com/gwintro.html
Wednesday, January 25, 2012
Door to the Floor
Nickerdoodle got blasted by a heavy steel door after school today, knocked his sturdy 110 lb. athletic frame to the floor. His toe, arm and shoulder are bruised and swollen, very sore. I'm betting his backside will be hurting tomorrow from falling on his tailbone. He really got nailed bad. I' m so grateful it wasn't his head, and luckily it was his left side and he's right handed.
The kids in the classroom he was passing were probably excited to get out because they have half days for exam week and threw open the door. So now besides the stress of exams, my Doodle is in pain. He's such a good natured kid though. He was pleasant and polite, getting up to get things tonight when I easily could have gotten them for him.
At first when he got home I hugged him while he explained what happened. I thoroughly checked him out, gave him Motrin for the swelling and pain. Then I set him in his Dad's recliner with his foot raised. Mr. Creative Doodle fashioned an ice pack around his toe/foot by taping it in place after it kept falling off. It stayed on all afternoon! I covered him with a blanket and fluffed a pillow, pretending I was a nurse to make him giggle. I gave him choices for lunch and movie. He ate popcorn, m & m's and blue raspberry pop (good for the soul) for lunch and we all watched Chickie's favorite flick, "Dunston Checks In". We all love it, slapstick mayhem with an orangutan, art deco period decor for me - what could be better? The kids love when I play the funny parts over and over...I've been known to rewind 10 x and more, everyone cracking up more each time (drives my husband crazy, but he wasn't home). Doodle enjoyed a few requests for ice or more popcorn, asking with a funny smirk, sending Chickie or me to wait on him. Hey, he's normal - who doesn't love that? Then he took a long nap but got right back into studying for the night. Great responsible kid.
This brings up another important point - he should have gone to a teacher, to the office or called me for help - a lesson I now have taught them - after his accident. But these things don't occur to us until they happen. In normal cirumstances, his next hour teacher would notice and send him to the office. He was likely embarrassed and just wanted to get to the bus, steely tunnel vision. He probably didn't let himself start to realize his pain until he was situated and on his way home. By the time he walked through our door though, he'd let down his guard and fully let his pain flow. To think he had to walk home from the bus stop on his swollen, bleeding toe. Ouch
For me, one of the most moving experiences as a parent is having my child come rushing to me for a comforting "Mama Hug". Though I loathe to see my children in pain or sad, I love the reminder that I'm needed, that my care helps. So touching, especially from an almost-teen who often pretends he doesn't hear you when his friends are around (Selective Hearing Syndrome, wink-wink). It sends a chill through me, knots my stomach and raises my BP to see my child come through the door crying. My protective Mama instinct instantly ramps up, primal, at the ready.
We may have to take a trip to the Dr. if Doodle's still having difficulty moving his arm tomorrow. After his morning exams of course. Because our fam (especially me) has caught every virus this season, I'll wear a full hazmat suit and spray the kids down with lysol in the parking lot. Just kidding...here's to a healthier tomorrow.
We may have to take a trip to the Dr. if Doodle's still having difficulty moving his arm tomorrow. After his morning exams of course. Because our fam (especially me) has caught every virus this season, I'll wear a full hazmat suit and spray the kids down with lysol in the parking lot. Just kidding...here's to a healthier tomorrow.
Saturday, January 21, 2012
Rockin' the Mall With Miss Small
Signs of a fun Mom /Daughter Girl's Night Out:
1) When you have so many tester perfume sprays on your arms and neck that you can't smell anything else
2) Choosing gumballs from the kiosk from 40 flavors, then trying to fit as many into your mouth as possible.
3) Finding the puffball snow princess hat that your daughter's wanted for 2 years...on clearance.
4) Scoring an edgy leopard bag for mama, on a "wow" sale.
5) Spending time with my fave girlfriend ever!
xoxoxo
Saturday, January 14, 2012
P.I.F.F. (x 2 O.S.)
Pay it Forward Friday times 2, on Saturday
Share a great blog day.Thanks to talented, funny Dad Vs. Autism (who featured one of my blog posts a few months ago. I fully intended to share another blogger's stand out post the next Friday, then the next, etc. You know how that goes. Well maybe not, but I do, I'm embarrassed to admit. No excuses, but it has been nagging me deep in the recesses of my neurotransmitter scramble.
So here it is, finished Saturday (of course).
I've been moved today. Deeply. Twice. Read it over and over/sigh/cry/hug my kids closely/share with a friend/share on my blog and facebook/think about it for weeks kind of moved.
The 1st heart-wrenching blog references the 2nd. Read. Re-read them on a bad day to put your life and troubles in perspective. We, as autism parents, are Fierce Warrior Parents. But these bloggers are self-proclaimed Dragon Moms. They sure get my vote.
I hope that this gets thrown in the face of the rude Specialist's career. This is a complex ethical topic, but his approach could have ended with much less anger,tragedy if only they'd let someone with people skills speak for the hospital. Just his demeanor and arrogance would make me take action. But these parents don't have time for trivial "manners" matters. They are in a time crunch to find another hospital. Godspeed and prayers to them and their precious Amelia.
In another post by this author (Words), Amelia's Mom credits another Mom and her raw article below.
In another post by this author (Words), Amelia's Mom credits another Mom and her raw article below.
2)
This blog is beautifully written, no whining, no complaining. Just real. As she says, they don't have time for worry about future, just for the here and now, enjoying their son during his short stay.
I'm blown away by these blogs and their stories. Are you?
Wednesday, January 11, 2012
PDQ #28 Woman Up and Get Real
I caught yet another messy virus, a byproduct of kiddie contact 24/7: temp, cough, sinus, aches. As I sit here feeling miserable and pondering slipping back under my blankets after G gets on the bus, I scroll through facebook and I'm reminded of reality. The world is indeed bigger than my stuffy nose.
A high school friend is waiting anxiously for surgeons to finish her son's brain surgery (cancer). She lost her mother this past year and is mourning her support.
Another autistic mom friend is taking care of her brother (also my friend) who attempted suicide last month.
A family friend prays as her niece and nephew wheel into surgery. Her niece is donating a kidney to her brother.
Another sweet friend brought home her baby yesterday for the 1st time in months. His heart defect has kept them at the hospital for most of his short life. He's on a ventilator, but HOME.
Blessings and prayers to all who have real life and death struggles. My heart goes out to my strong mama friends. Keep up the good fight. Love you. xoxo
Sniffles, coughs and aches? It's time for me to woman up, take some sinus meds and get on with my day.
A high school friend is waiting anxiously for surgeons to finish her son's brain surgery (cancer). She lost her mother this past year and is mourning her support.
Another autistic mom friend is taking care of her brother (also my friend) who attempted suicide last month.
A family friend prays as her niece and nephew wheel into surgery. Her niece is donating a kidney to her brother.
Another sweet friend brought home her baby yesterday for the 1st time in months. His heart defect has kept them at the hospital for most of his short life. He's on a ventilator, but HOME.
Blessings and prayers to all who have real life and death struggles. My heart goes out to my strong mama friends. Keep up the good fight. Love you. xoxo
Sniffles, coughs and aches? It's time for me to woman up, take some sinus meds and get on with my day.
Wednesday, January 4, 2012
Fairy Funny
 |
| G and his silly faces, now silly holey face |
G lost his 2nd tooth last night. His 1st permanent tooth is growing in, making room by pushing the tiny baby tooth next to it. After intense wiggling, it finally came out at 2 a.m. (G's sleep issues haven't improved, but everything else is wonderful).
I told G to put his tooth into a ziplock, then reminded him to place it under his pillow for the Tooth Fairy. He didn't respond for several minutes; he was looking at his tooth (and diligently processing as I learned).
G finally announced,
"Well. (sigh) I'm not going to put my tooth under my pillow tonight. Mom, could you call the Tooth Fairy and tell her not to pick up my tooth tonight? I want to show my tooth to N, M and Dad tomorrow. So tell her tomorrow is better for picking up my tooth and leaving my cash."
He had it all worked out. Who was I to insist on proper protocol?
I penciled in the Tooth Fairy for tonight. We'll see if that works into G's schedule.
I penciled in the Tooth Fairy for tonight. We'll see if that works into G's schedule.
Many do-it-yourself Tooth Fairy printables including letters, certificates, coloring pages:
Personalized Printable letter:
Products such as Tooth Fairy Pillows and other keepsakes:
Tuesday, January 3, 2012
A Little Reminder
Happy New Year!
Our family made our traditional Happy New Year's phone calls
to a few friends and relatives.
The kids took turns talking to Grandma.
G getting on the line,
"Hi Grandma.
It's G.
The one you like."
Gotta love it!
Tuesday, December 27, 2011
Bravo Artistas Baristas!
Watch this video to catch inspiration for our young adult's futures.
If you have trouble with above video, click this link:
Awesome, huh?
What I love about this inspiring autism mom's venture is she goes one step further than simply opening a business, a challenge onto itself. She provides employment opportunity for young adults on the spectrum, pioneering for a rapidly growing segment of autism's population. In her own humble coffee cafe, she has opened up eyes and minds in her community. She promotes positive autism awareness to all who come in contact with her venture in a ripple effect. For her spectrum employees, she offers possibilities, dreams, hope for their future. Their work grows their strengths, encourages social skills, boosts confidence, fosters independence.
As the saying goes,
Give a man a fish and you feed him for a day.
Teach a man to fish and you feed him for a lifetime.
~Chinese Proverb
I hope that scores of businesses/organizations take notice and find ways to empower our hard working, conscientious spectrum workforce. They might just discover the most capable, focused, organized, and loyal employees ever.
Got ideas?
I do!
Let's brainstorm over a delicious grande "Rembrandt" from Artistas. I'll meet you in Tampa (in my dreams). :)
Tuesday, December 20, 2011
Brief Twinge
 |
| G blows me a kiss, a sweet image to remember |
"Will you please go away now?"
Gong! Buzzer! Wrong! Not this time, Mama! I'd hit the limit, overstepped boundaries, wore out my welcome, became a nuisance.
G's 'Will you please go away now?' might as well have been, 'Get away from me, ugly b?#ch!'. Shock rocked my warm tender mood, delivered sleepless hours.
I choose to recall our moments of bonding just moments before, erase one tiny moment that cancelled it all out like a bad check. As autism parents, it's what we do. Wipe out negativity, shake off our kids' physical tantrummy-on-mummy, their fight-or-flight screeching panic attacks. We push away their harsh words so hurtful to us. We few, the proud warriors at the ready with fierce to-the-core love and protectiveness. Advocates. The tightrope we balance on is a shaky one, often frayed. We must build a tough skin; but need the raw emotionalism to recognize their struggles, teach them healthy acceptable feelings, actions and expression. We often overthink the tightrope. We engineer a perfect scenario only to be chased by the unknown, running precariously over a pit of snakes. Tripping, dangling at times; we always win. Our payoff: a squeezy hug, fleeting eye contact, connection by humor, exuberant goal realized, an offering of melty chocolate from their sweaty palm.
As a familiar saying goes, "It's not personal, it's business."
Alrighty then. The business of Autism. For it truly isn't personal to autistics. It's their business of coping, communicating when zoning into themselves is the easier preferred path.
Alrighty then. The business of Autism. For it truly isn't personal to autistics. It's their business of coping, communicating when zoning into themselves is the easier preferred path.
Tomorrow I'll create a social story to make it a teachable moment.
For myself.
For myself.
Wednesday, December 7, 2011
12 Quirky Days of Christmas Autism Style
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| Christmas in July! Summer 2010, an impromptu dress up/jam session in the garden next to my flowering towering hydangea. I'm so glad N and M are in choir - instruments are NOT their strong points! ;) |
12 Social Stories
11 Collars chewed
10 OT‘s-a-leaping
9 Potty Dances
8 Lined-up Legos
7 Stims a-spinning
6 Tics-a-twitching
5 Awesome Apps!
4 Calling Aides
3 French fries
2 Flapping hands and
A fleeting glimpse of eye contact!
and of course lots and lots of proud mama moments, love and laughs.
Merry Quirky Christmas!
Monday, December 5, 2011
I Say Wex-ler, You Say Wac-slr
Check out this refreshing article from Scientific American about the hidden intelligence that is being overlooked in autistics. In low-functioning, mid-functioning, verbal/nonverbal, physically impaired/non, mainstreamed or in special education classrooms.
http://www.scientificamerican.com/article.cfm?id=the-hidden-potential-of-autistic-kids
http://www.scientificamerican.com/article.cfm?id=the-hidden-potential-of-autistic-kids
Do you have a child on the spectrum who has a penchant for patterns, rhymes, visual spatial, logic, science, equations, music, art? As parents we see these abilities in our kids. Schools, social activities and mainstream settings usually don't unless they're in a progressive community. Not to say that all autistic kids are brilliant, as not all typical kids are. But they have abilities that aren't seen, therefore they aren't given a chance to grow and nurture their gifts. Think about how most autistics have taken to computer games, ipad apps, learning tools and communication devices. They barely need training, it is instinctual. What about their repetitive activities, noises or rocking movements?
We say young children take risks of daring physical feats because they lack the fear that adults have. They leap before they look. I believe it's this way with many autistics. They take leaps of thought we may not take because of preconceived ideas, logic, social mores, religious beliefs, current events, etc. Instead they blurt out their answers, see information as black and white; because they do not have to overcome fear or mental obstacles, social phobia.
Spectrum brains may "see", or experience the world around them differently. As Temple Grandin says, "Different, not better." But maybe it IS better. Wouldn't it be great to think so?
Does your child or loved one on the spectrum have a splinter skill? Do you nurture it, tap into their strength? Do you search for practical applications for those skills so that they may become productive adults? How about your schools - have they discovered any hidden treasures?
Back to the Scientific American article.
I LOVE this comment:
Comment #12:
Could it be that autism is merely the genetic growth and development of the human brain along its way to its next iteration?
What a fun, interesting concept to mull around. Perhaps they are to be revered by all, not just their caregivers. What do you think?
We say young children take risks of daring physical feats because they lack the fear that adults have. They leap before they look. I believe it's this way with many autistics. They take leaps of thought we may not take because of preconceived ideas, logic, social mores, religious beliefs, current events, etc. Instead they blurt out their answers, see information as black and white; because they do not have to overcome fear or mental obstacles, social phobia.
They: See ~ React ~ Report
Spectrum brains may "see", or experience the world around them differently. As Temple Grandin says, "Different, not better." But maybe it IS better. Wouldn't it be great to think so?
Does your child or loved one on the spectrum have a splinter skill? Do you nurture it, tap into their strength? Do you search for practical applications for those skills so that they may become productive adults? How about your schools - have they discovered any hidden treasures?
Back to the Scientific American article.
I LOVE this comment:
Comment #12:
Could it be that autism is merely the genetic growth and development of the human brain along its way to its next iteration?
What a fun, interesting concept to mull around. Perhaps they are to be revered by all, not just their caregivers. What do you think?
Wednesday, November 30, 2011
Samples for Santa and Son
Great big thanks to our newish (Sept.) Pediatrician for G. We discussed several options during G's med check. At the last minute he switched to a different med and thought it would be a good fit. He brought out samples to try, enough for over a month. I told him Santa appreciates that. Holy moley, this kid is expensive. How do families with multiple kids w/dx's afford it?
Again, this is a combo med. His new Adhd med works great for attention, but turns him into a tyrant. He throws things, crosses his arms and stomps around very very hard. He screeches. He runs around and is hyper until 2 am. He has potty accidents. He has dark circles under his eyes from lack of sleep.
The last combo med meant to chill him out made him even worse. I stopped it after 2 weeks.
Let's hope this new med stabilizes him. I asked him on the way to the Dr. How he thought his new med was...did he like it?
No.
Why?
It makes me say bad things and throw stuff.
What a breakthrough! He has become increasingly self aware in the last 2 weeks. Is that one of the "pros" in the comparison checklist? Absolutely.
Other "pros":
He has wonderful attention.
He is communicating better.
He seems to be more social.
He has an appetite. He'd lost 18 lbs. Since
Feb. Today's weigh-in he's gained 3 lbs. He was actually getting bony.
He's into music and singing, playing mytunes constantly. Yippee! This also means he requests music in the car. Before he often threw a fit if I turned music on (sensory) I love to sing in the car!
He's increased his creative expression. He's actually drawing, crafting, creating in amazing ways.
His tics are gone except the nail clipping/picking OCD, and sticking his fingers in his nose. UGG! Could there be a more disgusting obsession? But it's still better than his previous magnitude of tics.
Meds. It's all a delicate balance. I have to consider that he could be growing naturally more self aware, social, etc. But when changes appear simultaneously with new meds, I tend to believe it's the med.
I learned some shocking news yesterday. I was skimming Facebook and saw a photo of G's prior ped. He is being charged with peeping in a window of a 12 year old girl on 4 occasions. I'm so hoping this isn't true. I just can't imagine it. He was so incredibly patient with G, and communicated well with him and me (with my 2000 questions). He's the Dr who gave us the miracle of pharmacotherapy. I'd tried a couple others, called many. Most wouldn't give meds. He did on our first appointment. He tweaked the meds, tried a few alternatives. Ultimately though, he said he wasn't comfortable dispensing meds with multiple dx's present. He advised a pyschiatrist to get it worked out, they knew these meds very well. It ended poorly when after about 50 calls (no lie), I called back to let them know that insurance mandated him seeing a psychologist, going through the lengthy, costly process of evalution. Only then would he be referred to a psychiatrist (probably with a multi-month waiting list). Then the consults with them before dispensing meds. Ugh!!! I had neither the patience or time left for that. I have a at least 30 dx's and detailed reports that I could supply any Dr. in order to document his precise issues. Plus insurance mandated that he sees psychologist regularly for counseling therapy. REALLY??? The NP relayed this to the doc and he said to keep trying, he was not going to give more meds. I told the NP that it saddened me to have to now find a new pediatrician. He was a brick wall, not budging. So different than his usual kindness. That scares me a bit as to why ...are the new class of drugs more dangerous? Why the change of heart/compassion? Maybe it's protocol.
I had to laugh and accept it, multi-task while I waited on hold endless hours waiting to speak to a human. What would G's psych sessions look like? Clearly NOT the typical lie down on the couch and bare his soul, discuss his issues. He's 6!!! He thinks the world revolves around him. Therefore, he has no problems! Life couldn"t be better!
I finally was referred to another doc from another mom who I struck up a conversation with when somehow G's Adhd came up. I've been very pleased with the new ped so far. He's gentle, kind and specializes in ADHD, ADD, ASD. He picked up where we were, asking many questions and treating us both with ease, humor and respect, as our previous doc did. Best of all, his office is closer to home.
Onward to new horizons. I'd be stuck without a ped if we hadn't changed G's last Dr. He took a leave of absence pending this accusation and legal action. I'm afraid that true or not, his career will be affected poorly.
Meanwhile, we'll be monitoring G. I'm so Prayng for SLEEP!
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