Mistletoe, Merriment, and Unsung Heroes

12th Annual Mistletoe and Merriment Concert

Last night a child named "Cisco", whose favorite thing to do is "throw stuff down" got to walk across the stage using his walker, throwing down gifts to the tune of "Mr. Grinch"....until finally Cisco and his entourage made it to the Christmas Tree, a very, very large, heavily decorated Christmas tree, and to the delight of Cisco (who by the way, could barely even get out of his wheelchair 4 years ago), and the even greater merriment of the audience, Cisco, the Grinch, threw down the enormous Christmas tree and laughed!!

Then Missy Worden, the world's best music therapist, who just happens to work for Fulton County Schools, announced the next act, two students in 5th grade who have known and loved each other for years. Missy explained to the audience (another full house, by the way) that these 2 special needs students always missed each other when one was absent, and just were blue without each other. Missy sadly explained they would be in middle school next year, so this would be their last time in the Woodland Elementary School's famous concert, Mistletoe and Merriment, and then opened the curtain.

They sat happily on high stools in full hippie costume, a beautiful boy and girl, and lip-synched "I Got You Babe" (well actually they were singing along pretty robustly) to an entranced audience of parents of special needs kids, special education teachers and parapros, and whoever else has managed to figure out that this really is the best Christmas Concert in the whole world. Needless to say, they got an enthusiastic standing ovation and thoroughly enjoyed their song in the limelight, their last song as a pair in that wonderful concert we get every year.

When Tommy first got diagnosed, we were so devastated...and it took a couple of years to really recover from the loss of "our" dreams for him. But when your child is diagnosed with a disability, you meet a better class of people. They, along with fellow parents and the good Lord, show you you are not alone, and proceed to not only teach but really LOVE your child. They are not whiners (special ed teachers are the toughest, most practical people you will ever meet), they are not whimperers...they, their parapros, the therapists, really appreciate our kids and not only love but accept and even embrace their differences. Diversity.

And they have no patience with whiny parents who feel sorry for themselves, nor should they. Your child is a gift, they seem to say, embrace him, love him, and live your life. And they teach us to do just that. Although sometimes they would surely like to give us, the parents, a spanking to hurry up the process.

All the while teaching kids like Cisco quietly with strength and patience to walk. Teaching kids like the Sonny and Cher pals to take care of themselves, and teaching kids like my Tommy, to talk. And teaching ALL of these kids to sing, dance, and celebrate the holidays in a beautiful annual performance. They are unsung heroes...who teach our children to sing.

So thank you Missy and all the teachers and paras, for teaching our children to sing, and once again making the best concert in the whole wide world (Mistletoe and Merriment) happen for the 12th time! We love you!! And we DO know you are heroes.

The POOP Wars

We will NEVER forget the day that Dr. Pakula, Tommy's neurodevelopmental pediatrician looked at us over her glamorous reading glasses to tell us, "This is the hardest group to potty-train. You may need professional help."

Almost 4 years later, last week, I had a moment. Katie, Tommy's ABA therapist was here, and he RAN into the bathroom (with no prompting), pulled down his pants, pooped, SORT of wiped, then washed his hands (with some prompting he didn't flood the bathroom or drink sink water and then spit it into the toilet), and ran out. We looked at each other, smiled and just said, "Wow...." With a tear in my eye, I told her, "It's been a long haul," and she knew exactly what I meant.

It's one of those dirtly little secrets about autism that nobody likes to talk about, The Poop Secrets!! According to the National Research Council surveys, toileting issues and behaviors, including stuffing toilets with paper or items, playing in toilets, flushing constantly to the frustration of all, and smearing feces make toilet training more difficult and intensive for children with autism. I would add to this list the fact that motor control and hyperactivity prevent some children with autism from wanting to sit still long enough to "get the job done"....and challenges with sequencing steps of behavior require picture instruction and carefully planned reward systems.

2 years ago, Kessler watched me have an out-of-body experience with the poop wars...we had been briefly discussing Tommy, who had run over to jump on the trampoline....within minutes, he was COVERED, the trampoline was COVERED, he was naked, and as happy as a clam, jumping jubilantly covered in his own very interesting crap. I lost it....I screamed at the top of my lungs, NO....NEVER, NEVER, NEVER TOUCH POOP....POOP IN THE POOOOOTTTTYYY!!" and then spanked his bare, poop-covered butt. He then cried and threw himself on me, so we were both covered in poop...him crying, me crying, and the therapist staring at us wondering if this job was really going to be worth it or not.

I felt myself leave my body and float up over the trampoline, which was brown polka-dotted by then, I saw my crying, brown, polka-dotted child, and my own brown polka-dotted self, and I wallowed in self-pity and frustration and Yes, Brown Polka-dotted POOP despair, that's right.

We read all the books, we got advice from everyone, we entered him in the Marcus Institute because Dr. Pakula said they were excellent at getting "these kids potty-trained..." NOTHING worked....

We prayed for grace and developed a level of patience that only that guy Job from the Bible could attest to. We timed our outings carefully and tried to control our anxiety about what might happen with pooping in other places. We did our very best to keep our dirty little secret to ourselves.

We would spend HOURS in the bathroom with Tommy, KNOWING he had to poop, and he would sit there happy as a clam watching DVDs...and then after 2 hours, we would give up, and he would run outside and crap in his pants in a corner of the yard while we cried in desperation and exhaustion. We learned to "Fling Poo" in the woods with leaves, through the air, we flung poo, and we wept.

Finally one Christmas, I said, "This is it, I can't take it anymore, I know it's the holidays, but he is NOT LEAVING THE BATHROOM UNTIL HE POOPS IN THE TOILET." My family was concerned, but I was determined. This is baby bootcamp, I told them, and this Christmas, by God, IT'S HIM OR IT'S ME. I set up camping gear in the bathroom, snacks, sleeping bags, and books. We did not leave for 5 hours...he clearly needed to poop, but.....and then finally, with me holding him on the toilet, HE POOPED IN THE TOILET. I celebrated, Mark celebrated, and my family decided we out of our damned minds, and you know what? At that point, we pretty much were. Well, that Christmas battle wasn't the end of the POOP WARS, but at least it was the beginning of the end, and just to let you know? Camping out in the bathroom and living there until they poop DOES get the job done.

Dr. Pakula's comment, I had thought, was RIDICULOUS. What do you MEAN this is the hardest group to potty-train, that we might need 'PROFESSIONAL' help...(which ended up being for him AND us by the time it was done).... I thought, she doesn't know me...I can do ANYTHING!!!

Well, she was right - it was unbelievably hard, and it took the strength of a lion...so now you know a little dirty brown secret about autism.

But don't tell anyone else, ok?

When you meet a person with Asperger's Syndrome, you will know it within minutes...they will engage on you on their topic of interest, and you will be impressed at their knowledge.

Just don't try to talk about your own interests or self with them.

"The Curse of Asberger's".... is the disorder of self-absorption, brilliance, amazing memory, and absolute indifference to what anyone else goes through unless it relates directly to them.... marked by the inability to RECIPROCATE IN CONVERSATIONS and a very obvious lack of eye contact. And a tendency to go ON and On and ON about trains, the Beatles, or Superheroes.

As adults, an inordinate number of them work at "Best Buy" (bless you, Best Buy, Circuit City, Used Record Stores, and in computer, technical, and accounting industries)

I spent 45 minutes trying to get away from a salesman at Best Buy the other day (no eye contact, nice guy, clearly bright) who proceeded to recite the entire history of "They Might Be Giants"....sigh, I was tired, but I thought, man, this guy is on the spectrum...let it be. Wait him out. How many others are going to do that for this guy?

Sound like someone you know? Could be an undiagnosed Asperger's Adult!

The Asberger's kids are being diagnosed, but not really treated in most public schools...we still just don't seem to get that a person's whole life, future, relationships, everything...is affected by whether or not he can reciprocate in a simple conversation. Like that is an unimportant skill that you should just "pick up" along the way. HELLO WORLD, IT'S NOT PICKED UP IN THIS POPULATION AND YOU ARE WRECKING THEIR LIVES BY NOT INTERVENING IN THIS AREA AT YOUNG AGES. Yes, public schools AND hesitant parents. I'm talking to you. If you think they are annoying as children, then wait until they grow up....or don't. Social skills classes and appropriate intervention could make all the difference in the WoRld to this population.

Nuff said? I think so too.

Despair

I hate the Serenity Prayer.....I threw away the plaque of it I had on the wall.

It seems like such a cop-out.....

The courage to change the things that I can...and the wisdom to know the difference??

Screw you, Serenity Prayer.

I don't WANT to have the wisdom to know the difference. I don't want to think about the fact that my 6 and a half year old cannot speak in sentences...that his articulation is impossible for most people to understand.... I don't want to think about the fact that he PANICS in the Panda House....or that the newest medication they are trying is making it worse...

He looks tired, and anxious this week on this drug...and if I turn away for too long, he stomps his foot in the toilet, takes his toast and makes confetti out of it and throws it around the house...or runs down the street naked.

The WISDOM to know the difference?????

I know I should be concentrating on the highlights of the day....
* He's learned to dive wayyyy down under the water to get at his precious sinking watering can.
* He told the therapist to "Go away" so clearly that we both were delighted!!
* He learned to swim in the ocean this summer...

But once in awhile, as I watch him in his isolated world....not part of the groups of other kids playing their games and having their conversations...he can't even begin a conversation...

I despair...not often....just once in awhile...

Lord give me the strength to accept the things I cannot change
the courage to change the things that I can
OK, and the wisdom to know the difference....
But don't take away my hope that my son will some day....

have a real friend that he actually talks to some.....
speak in sentences....
stop wanting to stomp his foot in the toilet anytime I'm not behind him....

and SCREW the wisdom...I HATE the wisdom.

The Serenity Prayer just absolutely sucks.

A Friend is a Festival of the Heart

My Friend Soren

I've got this friend named Soren..he's funny as can be!

He doesn't care that I don't talk, he wants to play with me!

He loves the hose, the trampoline, and all my favorite things.

He laughs, he shouts, he runs about - we eat and drink like kings!

He steals the hose, it makes me mad...then sprays the water high.

and soaks me while I laugh and run, while for that hose, we vie!

Let's climb the climbing wall and SHOUT! Let's put shaving cream all about!

and cover the house and cover the dog...until the neighbors are Agog!

I never played with a kid before, but Soren is SO LOUD!

He makes me play with him and well....it makes me kind of proud!

Mom keeps us playing with a smile, while Katie does her part...

I finally know what Nietzsche meant by...

A Friend is a Festival of the heart.

Today reminded me to calm down and stay focused.

We had such a good time together....in the car, he said
"Donald".."Hambooger" I said what do want on your hamburger...silence..I modeled "ketchup"..then I repeated, What do you want ON your burger. "Ketchup!" (this is called errorless learning...you model the answer and ask the question again, with great enthusiasm...it is an ABA method to teach kids with autism to talk)...MODEL WHAT THEY WOULD SAY IF THEY COULD, AND THEN ONE DAY....

We went to see the goats, chickens and donkeys...he smiled but said, "GO!!" I said "Ok then, bye goat" (He echoed, "Bye bye goat") I said, "By chickens!" Echo.

Then we got around to the two donkeys...this time, he got out of the car and tried to run down the road and I got him back and said, "Help feed donkeys grass..." and he did, smiling. I said, "What are they doing?" He said "eating!" I asked, "What are they eating?" He said, "Grass" (I'm so happy; these little answers come very hard-earned...)

We went to the playground and he hopped onto his little bike with training wheels and rode it to the swings. and said, "King High!!" I waited...so he would have to use language to get up onto the very high swing and it was worth the wait...."UP" he said....and I put him up. I waited again...nothing is free in our world..fun is earned with words. "PUSH" (happy as a clam, I pushed him high)

"Climb up!", he says. I'm overjoyed...we're climbing a big ladder. But he's scared. He used to scamper up it without any fear...we'd better practice more, I guess. He says, "GO", and I say, "Don't forget your bike..." He jumps on it and he rides (he can't stop so I have to run right with him with my hand on the back of his seat...and he won't let anyone put anything on his head, so it's without a helmet and people stare at me and clearly, they want to call DEFAX)....

We ride down the ramp to the river and he climbs up happily and spits into the water (it's one of the only places he's allowed to spit...and no, I'm going into that right now..this history of spitting frigging everywhere). He's tired...fighting a cold; he looks at me, grabs my face, looks right into my eyes and yells, "SEATBELT ON" (which means I'm tired and ready to go), so I say, "Ok, but you have to ride your bike." He jumps on, I help push him up the hill to the car." "I want water" (I'm jubilant with all this language today!!) I get him a glass out of the drinking fountain and he takes 4 sips and spits the 5th...I yell "WATER IS FOR DRINKING!! ALL DONE WITH WATER"...sigh.

In the car, he says "skittle, skittle, I want skittle..." I ask "What color?" (We're working on colors...he's always had a hard time with colors...and still does) but gourmet jelly beans are a great color-teaching aid...so we work...

The car is a great place for language. What's that? What do you see?

Publix is even better! Especially since he HAS to tell the baker which kind of free cookie he wants...and he has to find the dogfood for Maggie, the pasta, the grapes..

We had a good day. Good communication. Building on what he's got, and little by little adding meaningful words. He's 6 years old, and this language thing is coming late...but the bottom line is: BUILD ON WHAT YOU HAVE, MODEL WHAT HE WOULD SAY IF HE COULD, ONE-ON-ONE IS CRUCIAL RIGHT NOW, AND DON'T GET LAZY OR DISTRACTED. Roll up your sleeves, get extra help (I put out 3 emails today looking for extra therapists), and help him learn to communicate.

Together Alone

He's sifting sand...all alone...other kids are playing with toys, talking, arguing.

The family is laughing and visiting...but I can't feel right because he's up there

By Himself....I'm joking and chatting while he's all alone...

He doesn't seem to mind, but this isn't what is right...what is right is that we find a way..somehow-to include him in this event...we get him to jump with another kid, we get another kid to follow him....SOMETHING!

Swinging alone...sifting alone. He drops his beads to the floor and jumps. This repeats 20 times. He spins his "anemone", he asks, "Hose on?!" 30 times straight. Everything is 20 times.

He's 6 and a half....he repeats a few things a lot. But his FACE shows SO MUCH MORE!!

He understands so much more than he can say. But people write him off because he can't talk to them. He's in a different world, trying to find a place of his own. Other kids try to talk to him, and he doesn't answer...so they go on...

But when he wakes up in the morning, full of joy, a face of wonder...when I pick him up at noon from school to start our busy afternoons...what happiness, a big hug to see me--we HAVE to get him to play with other kids. Thank God for Soren!

I wonder, HOW???? about all the other things he needs to learn? How am I going to teach this child to read when he won't sit down? With additional diagnoses of hyperactivity disorder and verbal apraxia that make it even MORE difficult for him, as if the initial diagnosis of autism wasn't enough.

Will he read? Will he write? Will he speak in sentences?

Or will the rest of us just learn that there is more to life than words, words, words.