All in a Day's Quirks

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. 


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

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?

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/

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!)

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!

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... :}

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

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???  :}

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!

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

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!

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! :}

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

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

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

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

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

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

wacca-wacca-wacca


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