Friday, June 11, 2010

Sexuation Situation

Bookmark and Share  Parents have been buzzing about 5th grade Sex Education Class since kindergarten.  They ask in hushed tones if you've had "the talk" yet, when you plan to.  Whether the mother or father will take the task.  They give a concerned frown and knowing nod when you tell them you have a child in 5th grade, " Have they done the sex ed thing yet?"  Parents report what a big deal the school presentation is. A special Health Teacher visits the school for the day.  The boys and girls get separate presentations, and the rumor is that the kids don't even look at each other for weeks afterwards.  We get notes sent home, we sign permission slips resembling legal documents.  The teachers make a to-do of it.  Parents are offered the opportunity to take the video home to review it.  The principal is available to discuss concerns and questions about the material covered. The school does a marvelous job of preparing and making everyone at once comfortable and supremely uncomfortable. On the presentation day, they cordon off the room and paper over the windows to shield the movie from younger eyes, adding to the mystery and drama of the event.
 So by the time the school presentation arrives, kids and parents are flustered and anxious.  I'm tense with worry at what could go wrong.  Have I left out some vital detail, prepared him for what he'll see and hear today?  Have I opened the door wide enough for discussion or will he instead talk to friends and get bogus information - or worse yet, look on the internet (yikes!).  I can't even predict what is going on in my tween's fragile psyche.  One of his close friends has not turned in his permission slip - may avoid the talk altogether he's so nervous.  I wonder if N will make it through the presentation.
 
A week ago N stressed wondering if I'd sent the permission slip, yes.  I'd told him the last 3 times he asked.  Then N wondered when it was.  Later he told me that he'd looked up the date for the "Sexuation" thing.  Just how do you keep a straight face with that kind of funny mix-up?  What an ingenius new term!  The marketing geek in me got thinking of a youth book on "Sexuation, the New Sex Education", or how-to-have-the-talk-book for parents.  My mind raced to design and promote a "Sexuation Kit" for the whole family...Discover the healthy way to share this intimidating subject matter.
 
I laughed, N had created another of our "family-isms", aka inside jokes.  He slipped up and wordbined (combined 2 words), that's now our family term for sex education. So funny!  We laughed at his new word to break the tension filling the days until the DAY.
 
By the DAY, the whole household felt the effect of my worry over N's review.  N got home and I asked him how his "Sexuation" was.  "Horrible!" he declared.  "Horrible - why?" I asked, alarmed.  "It was just gross."  "What was gross and horrible?" I pried.  "I dunno, but some kid actually barfed!"
I chuckled with comic relief!  I sighed in relief that N thought it was gross because someone barfed, not a  struggle with the content.  I visualized a kid so disgusted with the material that he barfed.  It rings of a sitcom or SNL skit. 

"It's a bad sign that a boy barfed during the 5th grade sex education presentation today."
After I posted this gem to Facebook, I found out the barfer was a friend's sick son.  What I thought was a funny post about the presentation stress turned into a mom's nightmare.  It took me awhile for the reality to fully sink in.  I was surprised because this mom is fun and outgoing.  I thought she was being hypersensitive about her son.  Just make him laugh, I thought.  Help him to see the humor in it to shed a new light on it, or give him ideas for a snarky response to teasers. 

My experiences with G have changed my perspective on how devastating this could be for a boy, a mom; lowered the bar of proper public behavior and public opinion alike. 

But then I remembered how big this "Sexuation" was.  Years of worry, years of preparation, but mostly years of BUZZ.  I imagine she worried that parents would buzz about her son for years to come, telling how the presentation made one boy throw up.  "Oh yes, he was so nervous he just threw up and they had to...blah blah blah."  Blech.  This IS how these things start, and I'd potentially exacerbated the situation by reminding those who knew and letting others know who may not have known at the school.  UGH! 

In a response to my private apology, she mentioned that he'd been teased on his way out of school already.  I envisioned her handsome son: deflated, pale, feeling sick, out of it, and teased by classmates to top it all off.  Kids can be ruthless.  

Please parents, don't make this into a story, a drama to scare parents with.  We already have enough reason to worry.  We worry that we're doing enough at home to support our children, to help them make sound choices and to discuss problems and questions with us.  To help them grow and learn.  To let teasing roll off their back and not to be a bully or be bullied. 

I'm grateful that my friend let me know that it was her son and that she was hurt by my post, my action.  I may have forever lost a friend and damaged her son by promoting gossip and stories to be passed on from year to year, growing in intensity like a bad game of telephone.   All this boy did was to get ill at a most inopportune time.  Let's wish him well and hope that his mother doesn't have a sick stomach from all of this.  I do.

Wednesday, June 2, 2010

Playing for Peace

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Enjoy a peaceful Memorial Day...for the world is bigger than our problems.  It's good to remind ourselves of our blessings.

Sunday, May 30, 2010

The Face of Autism is Not a Defined One

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May 29, 2010 Autism Speaks Blog Post
http://blog.autismspeaks.org/2010/05/29/itow_procor/

In Their Own Words – I Have Autism


I have autism. I hold only a few similarities to the character in “Rain Man.” When I am out on the playground, never say to my mother, “I would have never guessed that; he looks so normal” The face of autism is not a defined one.


I have autism. This does not mean I am deaf, nor does it mean I can’t understand your words. When cruel things are said, it hurts just like it would anyone else. Sometimes even more, as I am very sensitive.


I have autism. I am not blind. When you stare at me, point, and whisper – I don’t like it. I sometimes cannot control my emotions; however, I still can see you.


I have autism. I am not spoiled, undisciplined, or disrespectful intentionally. Don’t tell my parents I just need to be smacked, as that would never work and I smack back! All I know is if I am being hurt I must defend myself.


I have autism. This does not mean I am mentally delayed. I am very smart. I may focus on only a few things, but I have become an expert on them.


I have autism. Don’t think I am not capable of love or am emotionally detached from the world around me. I am very close to my family and sometimes need to be hugged. I do have the capacity to care. Especially if I see someone else being hurt or teased.


I have autism. I will line things up on the floor in my room in perfect order. This may be strange, but to me it is contentment. I can only relax if things are in sync.


I have autism. Which means I am supersensitive to sounds; I hear all of them. Even the smallest of sounds. When I get overloaded with too many sounds at once, It is hard to cope and I must step away and be alone. This does not mean I can’t handle the world, I just have to have more time to tune out as I hear more than everyone.


I have autism. I live by schedules. This is one of the ways I have found to cope with the chaos around me. Knowing what is going to happen at a certain time each day helps me prepare for transitions. That is why it is difficult for me to deal with a schedule change. I have to have order to obtain peace.


I have autism. It is very important for people to mean what they say That is why joking with me is never understood. Things are black and white to me, like a set schedule. If you say you are going to turn blue in five minutes, I expect you to do so.


So remember, having autism does not mean I am blind, retarded, unresponsive, incapable of love, or unable to function in the real world. I am unique and gifted because I have found a way to coexist within two very separate worlds. Take a moment to think about how many of us have difficulty within just the one world we live, now imagine juggling two. This is something I have learned to do. So forgive me if at times I have trouble separating the two, again I am only human.


I often hear people say to my mom, “It must be so hard for you” – no one ever says that to me. In fact, no one expects me to understand or respond because of the face society has painted autism to be. I do not know all that autism is, but I know who I am. I am special, and cherished. Almost like a superhero I was set aside to have these unique abilities. They are not a disability. They are not something to fear. In a way they are magical. I have unlocked parts of my brain that others cannot.


When you look at me, don’t look at me with sadness or feel sorry for me. Look at me with wonderment and I will amaze you every time.


This “In Their Own Words” essay is written by Tonya Procor, a loving mother of a son with autism.


Playing for Change


Enjoy a peaceful Memorial Day...
for the world is bigger than our problems.
It's good to remind ourselves of our blessings.











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Wednesday, May 26, 2010

Temple Talk: Easy to Read

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The Way I See It: A Personal Look at Autism and Asperger's The Way I See It: A Personal Look at Autism and Asperger's by Temple Grandin



My rating: 5 of 5 stars

Temple Grandin speaks from personal experience as ASD/Aspergergian, giving extra credence to her message. Her straightforward approach is honest and compelling. Each chapter is only 5 pages or so, giving parents with ASD children a sense of accomplishment when we finish each chapter - many of us don't get much time to read. It's easy to get lost in the mumbo-jumbo terminology, psychobabble of many ASD books, but Temple's simple conversational style is extremely user-friendly. She inserts delightful wit and no-nonsense advice.



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Adventures with Carl

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Carl's Birthday (Carl) Carl's Birthday by Alexandra Day



My rating: 5 of 5 stars

Carl books were suggested in a course for helping parents to work with their children to develop expressive speech. These Carl books have minimal words and many pictures to captivate children. Each time we look at these books we notice new details. Carl the dog is lovable, mischieveous, yet responsible. Delightful in every way and my little guy talks up a storm and his imagination gets sparked. Lovely illustrations too.



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Saturday, May 22, 2010

What we all need is acceptance - for my child

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An honest letter to anyone who knows a family living with Autism...handle with caring.

Dearest Naysayers, well-meaning friends, relatives and acquaintances,

Problem?  Oh yes, we certainly do have a problem here.  Sure, I know my child "appears" normal to you. Yes, I undertand that you see him for an hour once a week, month, or year and he seems just a little hyper or curious to you.  Really, I remember that he's only 4. Yes, I know that little cousin Joey or uncle Simon or your son at his age was a little active, naughty, didn't talk, didn't listen, didn't do well in school - heck nobody even went to preschool in those days, didn't have friends, didn't ride a bike, fell down a lot, didn't look people in the eye, didn't write or color, didn't like loud sounds or harsh lights or crowds, couldn't tell if his clothes were on straight or forwards. Sure, I know your niece Susie or friend's son Tom or your neighbor can switch moods and modes instantly, is stubborn, likes to spin, jump, rock and move all the time, likes really strong flavors, dislikes change and needs routines, loves to get messy, loves to stuff  his mouth with food, has potty training difficulty, enjoys water excessively, doesn't know when to stop with a fun activity, loves animals, has obsessive fascinations, has repetitive habits and movements, has imaginary friends, has limited interests, has limited language and social skills, has issues at school, runs away and escapes often, has no fear, has no sense of stranger danger, has skewed sense of love or hate, has no spontaneous emotional language, is completely self-absorbed, laughs when they get into trouble, shows completely inappropriate responses, seems unemotional or too emotional, doesn't understand consequences and has difficulty with right and wrong...or all the opposites of above symptoms, plus or minus countless others...

But NOT all at the same time in the same little body!

What we all need is acceptance - for my child is the same child as last month, he just has a new label!

I'm so exhausted from dealing with my little puzzle that I surely do not have the energy to defend, explain, or educate everyone that he most certainly does have very serious issues, is on the Autism Spectrum, and is not like ANY OTHER person that any of us knows.  Just as no 2 people are alike, no 2 ASD people are alike either.  I will not feel better until I figure out just what I can do to help my little guy live up to his potential. If it feels better to deny it, or tell me that he does not "seem" autistic, please, please keep it to yourself, or talk about it with someone else.  He is ASD.  I'm validated in this knowledge after fighting for the truth and a diagnosis after years of questioning, researching, worrying. Yes, this is harder on me than anyone else in the world besides my child.  I may be mourning my dream of his perfect life, I may never get past that.  I may be angry, or any of the other stages of grief.  But it won't get better until I try to help him function better.  I don't need denial.  I just won't accept it, though I'm WAY too polite and caring to say so. It hurts me; ridicules my excellent people skills, mothering instinct, and intellect. I know best, and through my efforts and tireless advocating, I'm now backed up by many, many experts. I don't talk about this unless I'm asked*, please don't feel you must give me your opinion, review or critcism of his diagnosis. It is what it is. At this point, I'm dealing with it, and I try not to bring it into other's lives more than I need to.  I don't want sympathy, attention or pity.  Just truth, and not surprisingly that's a moving target like everything else in life.  :}
*except for numerous FB posts/links/profile pix during my phase of acceptance after his initial diagnosis, which also coincidentally was just prior to April, Autism Awareness Month. Yes, I was a bit militant, I'll admit. :} 

What I do want/need is: I want people around us to be aware.  For his safety, for theirs.  Watch to be sure he's acting appropriately with socially acceptable physical, emotional and behavioral boundaries. He particularly doesn't understand babies and animals, yet is fascinated with them.  Help to keep an eye on him while I run to the bathroom or am engaged in something necessary.  If you see him running away and I'm not on his tail as usual, call him over.  If you see him with someone unfamiliar, yell for me or call my cell, PRONTO!  Engage him if you can, give him high fives and ask him about his day.  Show him something that you like, model great social behavior.  Smile at me, give me space if I look like I'm having a rough day.  Understand that it is not you, but life with ASD that is stressing me and making me weary.  Try not to tell me I look tired, exhausted, it just makes me feel really, really ugly.  Be wonderful to my other kids, for their life is so greatly affected by ASD, it tears me up inside.  I try to swing the pendulum to favor them, but I don't always succeed.  Understand if I don't answer the phone, the door, or you hear screeching or stomping coming from my home.  Forgive my poor memory, I have way too many facts, figures, schedules, routines, appointments, questions and chaotic thoughts rambling around in my brain.  Please have patience if I'm not as good a friend as I used to be, or as fantastic about calling, volunteering or hosting. And definitely don't wander into my home unannounced unless you have a seeing eye dog, and no white gloves either.  My life = chaos on so many levels.  I'm getting by one day at a time.   Give me smiles and hugs.  If I look freaked out, chocolate works wonders at bringing a smile to my whole being.  :}
  
There is no manual for how to behave when this happens to a friend, relative or acquaintence.  I'm not judgmental; and through this, I've gotten worlds better at shrugging off other's judgements.  I'm simply too preoccupied to devote time except the bare minimum.  If I'm talking to you, it's because I've chosen to take my attention off my child for a precious moment, you are so very important to me.  I'm a happy, social person and I miss having great long relaxed conversations.  I hope to return to that luxury someday.  With you.

I have plenty of other conversational subjects...try me...bring it...I'd love a chance to escape from obsessing over every little thing about my child.  Make me take a few hours off to go out for fun.  I need to!

Edit or shred it

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Edit or shred it.  This used to be my motto.  Not so these days.  I went for too many years not writing because I didn't have the time to properly edit my writing.  Not so any more, I'm a new writer.  Real and raw.  I've decided that instead of trying to be cute, creative, or any other synonym I'd love to be associated with, I'd better get real and simply write.  Of course I review and take care of glaring mistakes.  But gone are the days of theme, flow, and even carry-through of complete thought.  This is my time to reflect, a step above perhaps from stream of consciousness journal writing that I enjoyed before parenting took away that precious time in the evenings. 

Now I have to get back to writing.  For me, to be able to purge, to enable myself to look back, to share my emotions, triumphs and setbacks with others.  To tell a story or share something that delights me - creative, silly, sad, touching.  I may well be the only one who actually reads this, which is cool by me.  Even less of a reason to stress over details and wordsmithing. 

So forgive me my raw unpolished posts, and pretend I'm just a friend chatting.

Friday, May 21, 2010

Ch-ch-ch-ch-changes.

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Yesterday I was amazed when G handed me a pile of worksheets after preschool.  Completed.  Signed.  Huge 3" wobbly letters, but sitting on a line, right side up and not backwards.   Awesome sauce!

Last week I was floored when we went to the grocery store and he pushed the cart and stayed with me the ENTIRE time.  I never had to pull him back to task, chase him through the store, frantically search for him or apologize to countless victims of his screeching, throwing or bumping.  Though I still had to return a few unnecessary goodies at the register, wink wink.  Heck, my husband still does that, lol.

2 weeks ago, he came home and very deliberately gave me a gift that he couldn't wait to have me see.
He drew and created for long stretches on the driveway with chalk, elaborate creations that he excitedly explained to anyone who would listen.

3 weeks ago, he started asking where all the cars were going, like he had just realized that life existed outside of our car.  We still make up car's destinations as we drive.  I love it and so does he.

1 month ago, I took him to lunch alone and he behaved.  For the first time, I did not have to apologize to a single soul.  We RARELY go out to eat, this was huge.  I was elated.

6 weeks ago, G asked me, "What did you do today?" when he came home from school.  He also told me my hair was really, really lovely one day.  This from my "reporter" boy who only reports about his life, his interests and activities.  An unprompted, spontaneous loving encounter.

2 months ago, I thought there was something wrong wih him when we visited the zoo.  We had to wait for him, straggling, putzing along checking out every little thing.  His usual speed is turbo extreme, never fast enough to check out everything in record speed.  We visited the zoo again the following week on a crowded day with the whole family, and he was still slow as a turtle.  It was almost a complete opposite of his normal self.  We were puzzled, but grateful. 

3 months ago, he was completely adverse to holding a pencil; he wouldn't color, wouldn't draw, wouldn't do a worksheet.  He could not do a project without direction and redirecting, redirecting, battling and tantrums...unless it was completely his idea and the stars were aligned just so.  :}

4 months ago, in a NT prescool classroon, I'd ask him what he did after school and he'd reply in a faraway tone, I dunno or nothing.  Or he'd talk about the kind teacher's aide and something she did or said.  His projects were sad, haphazard creations of green.  He played alone and ignored his classmates.

5 months ago, he obsessed over wii games.  Then he alternated between playing the games and creating mii's - hundreds of them, transgendered, transracial, transposed letters combined in their names.  They became his friends, and I let him create his own world while I dealt with my own uncertain emotions at the time.  I was in the research, denial vs. acceptance, mourning phase of his ASD Dx. :(

6 months ago, he wouldn't sit still long enough to focus on a story most days - now he'll sit for several and discuss them or the concepts they represent. 

7 months ago, he started pretending; so much so that he has an imaginary friend, which totally unnerves me. 

8 months ago, G started talking more, asking more about his world.  This coincided with a speech program that I was taking to work with him. 

9 months ago, G would never walk in a school or public place.  He ran about, seemingly without a plan; almost like a puppy in a new place that must sniff every corner. 

These changes are truly amazing as I reflect upon his growth and how my hard work has indeed paid off and opened up our little guy to the world outside of himself.  He is better able to focus and regulate.  I needed to recall these triumphs tonight because although fantastic, his bevaviors are far from predictable and consistent.  We still struggle, he still tantrums.  He still closes off and won't budge, won't engage. 

This morning after his social skills class, I took him to the library to pick out new books - his new favorite activity.  After running helter skelter for a few minutes, pulling books off shelves and loudly exclaiming, I wondered if we'd have to leave.  I settled him with a story, cozied up on a couch.  Then he played computer games, navigating entirely by himself, while I weeded out the book selections and talked to the librarian.  Afterwards, I let him pick the restaurant for a lunch date.  We went to coney's again; I was glad since I'd had such good luck last time.  WRONG.  He was hyper and naughty, playing with his fork, almost poking the man numerous times who unwittingly sat behind G while we were in the restroom.  He was the old goofy, wacked out G, no listening, completely out of control.  I had to cut it short and come home to rest for 20 minutes before going on our first A-team playdate, with an another autistic friend that he's known for 2 years.  Luckily, the break worked for him too, because he was well-behaved at the playdate and afterwards. 

I can read and try all these techniques and therapies and classes, but I still cannot predict or communicate with him what will work.  Or more importantly, not work.  If only I had a formula for the right amount of sensory OT; the right environment of lighting, smells, sounds, textures;  the correct order of activities; regulated diet, etc., and so on and on...I could make sure that we were ready to face any adventure or situation. 

But then again, can we do that at any age, even as a neuro-typical (NT)?  How can I hope to ever get to the point where I'll know how to begin my plan to plan?  Because hope and moving forward and upward is our ONLY choice.  Most helpful to me is to reflect upon our successes as I'm doing here.  This will help me to sleep tonight and wake up refreshed and ready to face another unpredictable, potentially exhausting, grueling day filled with tears and screams.  But me - I'm hoping for laughs, tickles, and incredible insights into my little sensitive genius - and another tally on his accomplishment chart.

As the talented and lovely Mr. Bowie sings...Changes

I still don't know what I was waiting for
And my time was running wild
A million dead-end streets
Every time I thought I'd got it made
It seemed the taste was not so sweet

So I turned myself to face me
But I've never caught a glimpse
Of how the others must see the faker
I'm much too fast to take that test


Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes
Don't want to be a richer man
Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes


Just gonna have to be a different man
Time may change me
But I can't trace time


I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But still the days seem the same


And these children that you spit on
As they try to change their worlds
Are immune to your consultations
They're quite aware of what they're going through


Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes
Don't tell t hem to grow up and out of it
Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes


Where's your shame
You've left us up to our necks in it
Time may change me
But you can't trace time


Strange fascination, fascinating me
Changes are taking the pace I'm going through


Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes
Oh, look out you rock 'n rollers
Ch-ch-ch-ch-Changes
(Turn and face the strain)
Ch-ch-Changes


Pretty soon you're gonna get a little older
Time may change me
But I can't trace time
I said that time may change me
But I can't trace time

Fabulous saxophone fade.............................oh yeah!

Thursday, May 13, 2010

Educators Need Educating

The following is the best IEP advice that I've ever seen.  While it doesn't apply specifically to my son's needs or dx, the advice about empowering yourself and not being "bullied" by a hostile IEP team or school system is excellent.  I'll need to read this each time I prepare for a parent meeting or IEP in the future...
Click link  http://www.wrightslaw.com/heath/dont.care.iep.htm
I highly recommend the Wrightslaw website and books - an excellent resource for special needs law. This book came to my IEP along with my advocate and several well-organized binders full of records.  Chances are you've probably spent a small fortune on books and/or therapies for your child (and maybe yourself, if you're smart!).  Check your online library network, support group, therapy center, friend, advocate or even school to get your hands on a copy. 


MUST READ for all
who know a special needs child:
The following is the finest I've seen - a parent perspective on attitude and frustration with school systems dealing with a handicap.  I just may have to read this daily for awhile to stop apologizing for my son.  Like she says, would I apologize if he was blind and couldn't recognize his colors?   Read on, very moving...

Donna Aumann Cooper via facebook comment about above Wrightslaw article. 

I wrote this a year ago when my son was having severe challenges at school...wanted to share. My son, Jonathan, has autism, fully included in general education classroom.

If Jonathan were blind, would I expect him to see?

No, I'd give him alternate ways to "see" his world. Let him touch and smell. Describe it to him. Would I apologize for him? (Can you imagine..."Oh please forgive my son for his blindness"??)

If Jonathan were deaf, would I expect him to hear?

No, but I'd provide hearing aids and therapies for him to be able to function as best as he could. I would learn to be conversational in sign language so I could understand and know my son.

If Jonathan was disabled in such a way as he could not walk, would I be angry at him that he was in a wheel chair?

No. I think I would see the wheelchair as the best way for my child to enjoy life, and be able to participate.
Why then is it so hard for me to accept the behavior issues that comes with autism? Why do I expect my son to "be like the other kids" in regards to social issues? Why do I expect him to THINK and ACT like the NT Kids? Why does it embarrass and humiliate me when he doesn't?

Would teachers be saying, (if my son was blind) "Oh, gee, you're son couldn't identify his colors AGAIN today..."

Or (if my son was deaf) "No matter how many times we play the song, Jonathan refuses to participate in music. He just will not sing, not ever"

Or (if my son was in a wheel chair) "Once again your son would not walk to the cafeteria. I mean...all the other kids his age are able to walk and carry their own trays. But he just stays in his chair..."
But I am forced to hear about all the behavior issues, almost daily, and then feel like for some reason I need to do better, discipline more, talk more, find the magic wand that will "fix" him.

Why is it different for my son, than a child who is visually or hearing or physically impaired ?
I am pondering...
Donna Cooper

AWEtism@aol.com


Friday, May 7, 2010

A Potty in the Bush is Worth 2 Giant Grins

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I violated a critical Mommy Standard today.  G squirmed and jumped as we waited for his school bus, his joyful eyes watching his brand-new SpongeBob umbrella as he twirled it overhead.  I made an executive decision to keep that joy intact.  His telltale signs pointed to Potty Emergency.  I did not panic!  Instead, I told him that he could go pee on a bush if he needed to, pointing.  So off he went, thrilled to be a boy and "go" outside - because he could.  A porta-potty novelty in his own front yard, sneaking behind a bush in view of passers-by should they care to look.  As he skipped back, I checked my pockets for my ever-handy-hand-sanitizer.  Not finding any, I told him to wipe his hands on the wet grass to clean them.  GASP!  Where was my sense of dignity?  My germ-o-phobia?  Instead I laughed out loud.  So did G, but I'm not sure he got the full irony.  Or maybe he did...

You see, just a few days ago, I turned a corner.  G has been resisting the potty for a couple of months, not going until he's frantic.  He dances around, he grabs his front, his behind, but he always makes it.  His dance ritual has become a form of stimming.  No accidents, but I worry about UTI's and his misery.  I'm not sure why this new aversion came about after 9 months of potty perfection.  I've over-thought this as much as every other little crisis in our lives.  It's always been a rule to go potty before we leave the house.  G is resisting this more frequently with bigger, louder, kickier tantrums.  With kid's baseball season upon us, this becomes more critical than ever, to avoid those stinky Johnny-on-the-Spot germ factories at the ball fields.  Yuck!

Just a few days ago, I completely lost my composure after 35 minutes of prepping G to go potty before leaving to go to N's ball practice.  I sobbed all the way to practice, imagining the entire neighborhood heard our LOUD scuffle.  Each of us screaming, crying, slamming.  I shuddered to think how out of control we sounded, because we were!   Even N and M were freaked out as they waited in the car, and they've seen this potty tantrum countless times.  But they rarely see me react in kind (or shall I say unkind).  G screeching, me yelling.  I even stomped my feet...like a 2 year old.  Sigh.  We were late.  I gave in.  I was embarrassed and ashamed to lose it over a 4 year old and potty.  I try so hard to be patient, to encourage, to head off disaster and tantrums before they start.  I'd just been a rotten role model for my kids and half the city. 

I've decided that for now I'll give up on this one and let G work it out himself.  He hasn't had any accidents and doesn't have UTI's or constipation issues,so I can give it up to the Goddess of Special Potty Needs (I pray to her daily).  I haven't had an epiphany yet, but it could happen.  This is G's hot button of the moment, but that doesn't mean it has to become mine.  I'd rather have the neighbors see my little guy peeing behind a bush than hear us screaming.  Is that so wrong?

Shout-Out to Rockstar Moms of Special Needs Kids

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22 Reasons Mothers of Special Needs Children ROCK!

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

21) Because pride is ever-present when your kids have to try so hard to achieve what others see as a given... and are so happy doing it.  (KT)

22) Because we handle it when our children go from calm to tantrum in the blink of an eye, and have the bruises to show for it. Sometimes we get our daily workouts before 7 am, without stepping on a treadmill.  (Me)


Original Post:  20 reasons...by Ellen S, http://www.momlogic.com/
http://www.momlogic.com/bloggers/ellen_s/stories/

Thursday, May 6, 2010

Gift Ideas for "Special" Moms

I found the perfect letter for over-worked moms of special needs kids.  I don't have the heart to give it to my dear husband this year: 

1) He's been working 70 hours/week for 2 months straight...and still hugs the kids and me most nights.
2) He's got major family worries, and he's the fall guy.
3) Mother's Day just happens to fall on his birthday this year.  Love you, honey!
But simply laughing over it and sharing with you makes me feel better.  Validated.
 
Here's a link or read it below.  http://specialchildren.about.com/od/needalaugh/a/momwishlist.htm

A Special-Needs Mother's Day Wish List
By Terri Mauro, About.com

Psst ... moms! Commercials are going to try to convince your spouse that jewelry or candy or flowers are the perfect Mother's Day gift, but you know all too well that the important things in life don't hang on a necklace or clip round a wrist. Things like sleep. Understanding. Revenge. Tailor this list to your own special needs, then use it to give your significant other a clue about giving a significant present.

To my loving partner in parenting:
I know you're trying to figure out a Mother's Day present for me (and if you aren't, take this as a big, fat hint).

Jewelry is a lovely thought, but not exactly practical, given that our child might steal, break, perseverate on, or require us to hock anything nice to pay for medical expenses. Candy is always appreciated, but since I've just consumed all the children's Easter sweets to save them from obesity, diabetes, and allergens, I'm not really in the mood. Instead, honey, why not pick one of these gifts I'd really love. They may take a little more effort than something in the Hallmark aisle, but they'll make a big difference to me.

1. You know that material I've been asking you to read about our child's disabilities, that stack about 500 pages high? Read it. Now. Really.

2. Do some research of your own for a change and bring me something I haven't seen before. Then explain it to me.

3. Find the home number of every specialist and educator who ever dissed me and make some really good prank phone calls.

4. Offer to stand guard duty at the bathroom door while I take a nice, long, hot bath, free of constant cries of "Moooooooooooooom."

5. Buy some sturdy boxes for storing all the children's school papers, and then believe me when I say I have to save everything they've ever done for possible documentation of learning progress.

6. Buy some sturdy notebooks for storing all the children's specialist reports, and then organize them for me so I can always find the exact one I want in a snap.

7. Sit down with me for one hour to discuss decisions we have to make about our child's behavior, treatment, schooling, and/or future. No TV watching, newspaper reading, or dozing allowed.

8. Next time you're tempted to make some crack about a neighbor or a teacher or a family member that you just know our child is going to repeat out of context at the worst possible time ... don't. Just don't.

9. More precious to me than diamonds and rubies is a good long nap. Make it happen.

10. Next time we have a dispute over discipline, I win. (What's that? I always win anyway? It's the gift that keeps on giving!)


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Little Animation

I discovered this little animated gem through a parenthood chat on Facebook.  Love the creativity, whimsy and near-barf experience...

I want to see more of her creations!
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Name Game

Tonight I was reading a story where a main character's name was one letter off from G's name. My 4 year old G kept stopping me to see "his name" on the page. The fact that it was spelled differently than his mystified him. He got his funny furrowed brow working, the one that M and I love. He became a bit obsessed with it, flipping pages backwards and forwards to see this strange name that was his, but not his.

I tried to explain it many times, citing examples of names and words that can be spelled differently, yet sound the same. I told him that my name is Patti, P-a-t-t-i, but some people who have that name spell it P-a-t-t-y or P-a-t-t-i-e.

With a serious, sad expression G said, "You mean your name isn't M-O-M anymore?"

And so the discussion on titles ensued... :}

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Just Dandy

Another sweet story today. G got off the bus after school with a business-like air. I started my daily social skills ritual: trying to pull information and small talk out out of him which doesn't come easy most days.  I asked him how his lunch was, if he finished it all, etc.

He interupted my stream of 20 questions with, "I've got something in my backpack!"

I said, "Oh really, did you save some of your lunch for later?" 

He replied, "No...there's something in there and it's for YOU!"  And with a smile looked me straight in the eye - bonus! I asked if it was a Mother's Day present, and he said no, while feverishly checking all the compartments, unzipping and feeling around, looking for his treasure.  He finally exclaimed, "Here it is!", pulled out a crumpled up dandelion, fluffed it up, and handed it to me. He made a big show of taking a big sniff and saying how great it smelled, and of course I did too!

~ Instant Heart Melt: Just Add Tears~   Sniff sniffle

I asked if he picked it at recess, and he quizzically said, "No, I picked it at SCHOOL."  I imagined he was thinking, 'Duh, I just got home from school, not someplace called recess!' I'm pretty sure he doesn't know/understand the word recess.  :}

N's 1st flower gift to me was in Indiana, M's at our last home, now G here. N and M were about 2ish, G is 4.5...I simply forgot that I was waiting for this moment.  He picked a flower for me because he knew I'd enjoy it.  He was excited to give it to me, he remembered (obsessively of course), and was proud. What a milestone for my little sweetie!

I'm blown away at his progress these past few months. PROGRESS is my Mother's Day present. I'm doing it right. He'll get there, I just know it.

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Tuesday, May 4, 2010

Instant Rimshot

And now, for all you jokers and pun-wits...a special tool to put on your website, blog or Fb.
Me, I just love clicking it a gazillion times to irritate my 11 year old and make my 4 year old crack up.  :}
Instant Rimshot



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Engineering feat!

This video's TCFW - too cool for words



I wonder how many hundreds of times my kids will watch this...is there an app to track that???  :}

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Gift From the Heart

I got an early Mom's Day gift today.
Out of the blue in the car today, G exclaimed,"Mom, your hair is really, really lovely!"

The fact that it really wasn't looking so wonderful didn't phase me - I'll take it! This boy who rarely states anything other than obvious facts, more comfortable spouting off knowledge rather than emotion just gave me a compliment! That's worth more than any Hallmark greeting on the planet!

Friday, April 30, 2010

Stay Puft Marshmallow Man

New obsession Ghostbusters. G's new line: "Oh shit, it's the Staypuft Marshmallow Man!" Youtube=blessing/curse (literally). :O


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Password = too much computer time

You know you've been searching the net too much when you type your password with a .com at the end. ~ Me

It happened, late last night.  I cracked myself up!




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Thursday, April 29, 2010

The Perspectives of Temple Grandin

The Perspectives of Temple Grandin
More Temple coverage from Time mag. I looked up Temple on all our local news stations to see what today's coverage looked like. Guess what? Not one word, photo, or vid. All scandals, sensational stories about death, abductions or crime. Good news is not news. Detroit needs good news. They missed out, and so did Detroiters. She's a legend and a hero - Time says so too! :}




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A Dose of Inspiration Got Me Thinking...and Whining...and Planning

Link:  Hero: Time Magazine Top 100 2010 Temple Grandin

Met a genius today and was completely inspired. What an incredible, uplifting experience. Temple Grandin is a dynamic, hilarious speaker. Got to see her autism "quirks" up close and personal. I sat at the next table from her at an Autism Conference.  She had to get up and leave midway through another guest speaker because of distractions. She has obvious tics, and her social difficulty was quite evident.

I got her book, got her autograph. How cool and timely this event was. I really need this positive vibe right now as I wade through book after book, stay up way too late scouring the net, reading every Fb autism news blip, etc. I'm struggling to see which therapies are best, crying over the costs, lack of support, etc.

WARNING: uncharacteristic whining to follow...
This barrage of help and information also got me thinking once again of the time we've lost.  I've lost so much time because of G's late Dx, and I'm damn angry that NOBODY caught this earlier, even though I've been seeking answers since he was 18 mos., over and over, hither and yon. As I told my university parent group leader today, I'd really like to get involved with educating pediatricians, teachers, schools, etc. somehow to ensure that children get Dx early.

What is the universal ASD message? Early Intervention. 
Catch those children YOUNG!  Form new neural pathways.  Help them manage their difficulties. 

I intervened, where was my support?  Do doctors and schools think moms make up difficulties because they WANT their child to have autism?  Could they just take us seriously, hand out a phone number, maybe follow up?  We missed out on Early On (free!) services. Now we're facing $5K-$100K for the broad range of therapies and services that are prescribed but not insured for ASD. 

Hey, with 2 $$$ adoptions and helping destitute family members on both sides of our families, how can we even consider any of that? We're stuck in the "middle zone". UGH! I can't work because of G and we're already stretched too far financially. Most experts and parents say that you need a trained, licensed pro to guide you through the therapies, but we can't afford it. 

The most successful people are those who are good at plan B. ~James Yorke
So, Plan B.  Whining over, moving right along...I'm fairly confident that I can handle learning/working with G on my own. He's not a severe case, and his skills are responding to the treatments I've been working with him on.  I've already been doing my own OT for 1.5 years, and have worked hard to impove his speech with the Hanen program. The results are impressive, and he's getting support from school now as well (another story).  Maybe I can do this on my own and not have to drastically change our lifestyle...I owe it to my other kids, who already experience so much sacrafice of "normality".   Balance.  It's a heavy load on special needs parents' shoulders. 


If Plan B backfires, keep moving down the list. ~ Me
Plan C: If I can figure out a loophole in our budget, or G starts to backslide, or I go bananas...
I found some leads to hire college students/recent grads for ABA, OT, Speech therapies.  I sat with 2 recent SLT grads who told me to check Craigslist, of all things!  Who knew?  Certainly not me.  Plus I found a center that I feel comfortable with, is relatively close by, and my newly reunited dear old friend is the program director as well. I was mightily impressed with the center's speakers; their tone, knowledge and future direction. And through a random question to my friend, found a source who explained that IPOD I-Touch apps for ABA are free during autism awareness month - which of course ends in 28 hours. I may be up all night downloading...:} So excited - G is all about electronic interaction I-Touch - perfect for him!  ITunes also offers PECS/Social Story apps at a cost.  But now I REALLY will never see my I-Touch.  A small price to pay indeed.

ITunes links to really cool apps:
http://www.kindergarten.com/

http://itunes.apple.com/us/app/grace-picture-exchange-for/id360574688?mt=8

http://itunes.apple.com/us/app/taptotalk/id367083194?mt=8

http://itunes.apple.com/us/app/proloquo2go/id308368164?mt=8



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Jammin' Good

Listened to some good jams tonight on the way home from the Autism conference.  No kids in the car:  Blasted it!







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Tuesday, April 27, 2010

Infertility Etiquette

Found this pretty well sums up most of the items I used to struggle with. I wish I'd had this list to gently send out (or get printed on a t-shirt) when we were struggling before adoption.
Infertility EtiquetteRESOLVE: The National Infertility Association



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The Big Dig

Archaeological dig? Oh yeah, we live out of my mamavan most days. I call it our home on wheels. Once before giving someone a ride I cleared a seat in back, and was totally embarassed to find a pair of my son's undies. Sure, the kids use it as a locker room between activities and sports, still I wondered: just what did he change into...or did he go commando? Ewwww. :}


The Big Dig: Contents buried in car tell the story of a family - AnnArbor.com



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Widths - yikes!

A lot of people are afraid of heights. Not me, I'm afraid of widths. ~ Stephen Wright

http://www.insanewiches.com/?p=1435



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Insanewiches

wacca-wacca-wacca


http://www.insanewiches.com/?p=937



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Friday, April 23, 2010

Children's Newberry book winner Rules review

Rules Rules by Cynthia Lord



My rating: 5 of 5 stars

Read this together with my 11 year old son for a Newberry winner book report. Easy, fast, funny read, believable characters - he loved it. I was looking for a bit more insight into issues siblings have with with autism and its' effects on families. This book translates into compassion for all disabilities, but autism proper, not as much. An excellent read and a great message for kids to be themselves, not cave to peer pressure and accept disabilities.



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View all my reviews >>

Chicklet’s Best Day with Mom EVER!

My husband told me yesterday that our 9 year old chicklet M was disappointed. Her teacher had asked the class who would be going to work with a parent on "Bring your child to work day". DH has been working stressful 15+ hour days for months and there was simply no way for him to take her. I asked her if she'd like to join me on my day as Mom. She lit right up!

And so began our workday. 3 a.m., I awoke after only 2 hours, couldn’t sleep, my husband snoring and me filled with anxiety. I tried to relax, but finally went downstairs and watched tivo. M came in about 7, I wrapped her into my lap and I fell right asleep. My darling girl got up and played quietly with my 4 year old awhile later, to let me catch another hour of sleep.

We entertained ourselves with goofy activities – drew pictures, played school, ate poptarts for breakfast. Yum! It’s Earth Day, so we drew pics of the earth, trees, flowers. I took video of them singing “Happy Earth Day” to the tune of “Happy Birthday”, and posted it to YouTube. OMG, you’d think she won the lottery – jumping up and down, “we’ll be famous!”. By day’s end, even after linking to my Facebook page, we only had a handful of views, but I dared not burst her bright bubble. She’s a star!


We got G ready for preschool, and waited for his new schoolbus to arrive. G was recently diagnosed on the Autism Spectrum (ASD, HFA, PDD-NOS). He started in a new special education program a few weeks ago, and the biggest perk for him is getting to ride on the “big orange schoolbus” like the older kids. Today was only his 2nd time, so he’s still in Awesome! mode. M was elated, and acted like a proud mommy, kissing and hugging him over and over as we waited excitedly. She was thrilled to see that his bus driver is HER bus driver – bonus! She watched him get buckled in and waved like crazy as we watched his little bus drive off.

Our time! I’d given her a few choices, so off we went after loading the car with bags and bags of donations that we’d cranked out last weekend. We made our drop, then made a return, and browsed at shoes for awhile. Next stop Red Robin, her restaurant choice for our special mom workday lunch. She asked in a mature tone, “Do you often lunch?” Never! I told her stories of how I used to love lunching with girlfriends. Good times, long ago! We played tic-tac-toe, worked through the play-placemat while she slurped her smoothie. We munched and chatted about her friends at school. We bought quarter gumballs. The hostess asked if she’d like a balloon, and I saw M’s inward struggle: childhood fun vs. tween-age sophisticate.  Finally she picked a bright balloon.  Inward high five to myself!

Absolutely the greatest $50 spent on a surprise treat…
On a whim, I’m not really sure why at all, I turned into a nail salon. I fully expected it to be booked or too expensive. It was neither, so I succumbed to whimsy. We chose perky colors, deep luscious purple for me, vibrant pink for M. She sat for her first manicure, excitedly perched on the edge of her seat, studying the hard-working serious nail goddess. Me – I got acrylics! I’ve only had my nails done one time, for our wedding 15 years ago. I have hideous nails! I’ve struggled for years with breaking-peeling-jagged-short nails. We kept stealing gleeful looks at each other, feeling naughty for doing something so luxurious. M got a pretty design on her thumbs and loved it! She marveled how her nails glowed when the tech put mysterious goo on her nails and led her to sit under an ultraviolet light. She had to wait awhile while my nails were worked on, but she gaped at every little detail, absorbing feminine swank. A joy to behold for each of us, as I watched her. We talked about our nails the rest of the day. We waited expectantly to see how long it would take our boys to notice our gorgeousness. She delighted in keeping a secret from them, waving her nails in a flourish.

I’ll admit to fluttering my perky purplicious nails a bit too. And giggling. Lots.

Most wonderful gift of all: Chicklet told me and her dad over and over that she had “The Best Day Ever with Mom”.

Saturday, April 17, 2010

Autism Awareness CBS News

Collecting the dots, not connecting the dots...

Watch CBS News Videos Online


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Doh!

I know it's been a great day when bits of dried up play-doh fall out of my hair in the shower.

http://www.hasbro.com/playdoh/en_us/



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Friday, April 16, 2010

Facebook workout

Funny funny funny...





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Wednesday, April 14, 2010

FOUND Magazine | The Best Thing Ever

You never know what might happen while you nap in the park on a sunny spring day...
FOUND Magazine The Best Thing Ever



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Friday, April 9, 2010

Always wear your seatbelt!

Powerful PSA...




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Thursday, April 1, 2010

Autism Awareness Month

Autism Awareness Day and Month. I'm feeling particularly passionate these days since G was one of the kids diagnosed at 4 1/2. Early intervention is key! We're making up for lost time, busy-busy. Watch those kids, trust your instincts. YOU know your child best. That's my speech for the month. ;) ♥

http://www.cdc.gov/ncbddd/actearly/index.html



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