Tuesday, December 30, 2008
Sunday, December 28, 2008
The Stoutmen! Thank you to this wonderful band(above), and to Old Friends. These musicians are not only incredibly talented, but also incredibly generous, donating their time to help a little girl they'd never met before Saturday. We can never thank these two bands enough! Also a big thanks to my brother Christopher and his wife Lori who performed an acoustic set between bands. You guys were awesome!
Sean from the Stoutmen (we went to high school together, he's on the right in the top photo above. His wife Therese just sold a book that's going to be a best seller, remember? Stick with me...)let Seth try his drum before the show.
Me and my friend Michelle. Michelle zipped into town and shook down hundreds of dollars worth of raffle prizes from area businesses. She was on fire! She had it under control! Fancy restaurants. Nail and hair salons. You name it, she got it! We had many great raffle prizes donated before Michelle showed up, but after? Holy guacamole!
As you can see, Seth is a ham and Riley did fantastically well the whole day. She ran over to me a couple of times concerned,
"Mom. I'm sweating.""That's great Dolly! You're having fun and making muscles!"
"Okay," and back she went to the dance floor. Just needing a little reassurance.
All her cousins were there. She knew most of the kids. She had a ball! Seriously, the adults took breaks, but the children danced for four hours non-stop. Oh, look! This is my niece Lauren (my sister Kelli's daughter) and her boyfriend Sean. Here, they were figuring out the popcorn machine before the concert. They took the money at the door the WHOLE time and didn't ever complain. They are awesome! Thank you Lauren!!! You and Sean worked hard and I appreciate you so much! These are some of Riley and Seth's Virginia cousins. They sold raffle tickets and kicked butt! We made a lot of money toward Riley's dog in raffles! Go Moran children! Look at those faces. Could you walk by and refuse to buy a raffle ticket from them? I didn't think so.
And drum roll please? Do you want the figures?
Friday, December 26, 2008
Asperger’s is a high functioning form of autism. Most people with Asperger’s have heightened sensory systems and difficulty reading social nuances. Many with Asperger’s have low frustration tolerances. Children with Asperger’s may have gross and fine motor delays. The Aspergian may have narrow areas of interest, and may appear to have a lack of empathy.
What Riley wants you to know
-I am trying my best even when I have a hard time.
-I am unique.
-I am a sensitive person.
-I sometimes have a hard time making friends because I don't know what to say.
What Seth wants you to know
-I love my sister.
What Todd and Michelle want you to know
- An impaired ability to read social cues or facial expressions does not equal a lack of empathy. Riley is an extremely empathetic child but sometimes situations have to be explained to her before empathy is evident.
- Bio-medical treatments for autism exist, and children are recovering to various degrees. Riley has made huge strides over the last several years.
-Medical insurance companies routinely discriminate against children with autism, refusing coverage for needed services. This has happened to us repeatedly.
-We are not anti-vaccine, but we believe the current government mandated vaccine schedule is too much too soon, and we encourage parents to educate themselves on vaccine safety. One size does not fit all. www.4ahealing.com
-Riley is the sweetest, kindest person you will ever meet. She is a gifted writer and artist. She and Seth are our joy, and our greatest blessings.
We plan on having a wonderful, family event. Happy holidays everyone!
Wednesday, December 24, 2008
Monday, December 22, 2008
So last Monday, I was wistfully visualizing a day when Riley would have friends, which led to me to thinking about that "weird little bunch" girl in the film Normal People Scare Me, which made me wonder what Taylor Cross was up to, which made me e-mail his mom Teri Bowers and ask her some questions, which led to Teri's wonderful and thought provoking answers, which included Teri telling me more about that "weird little bunch" girl, (who I loved so much because she reminded me of Riley), and so I googled her and lo and behold, here she is. Ladies and gentlemen, the inspirational Amy Gravino....
Read Amy's blog here.
Chugga chugga! Woo! Woo! Stick with me folks, this train moves fast.
Sunday, December 21, 2008
A second "Normal" film, The Sandwich Kid, was about Taylor's younger brother Jace, and addressed the triumphs and challenges for siblings of kids with special needs. It too is a wonderful film.
Recently, I had a chance to talk with Keri via e-mail and ask her some questions.
What are you and Taylor doing now? Though Taylor and I continue to travel with our film, Normal People Scare Me, and his business “Taylor & Autism Unraveled,” we continue to deal with the daily realities of autism in an adult world. There’s a magic line between a cucumber and a pickle (as I say), and once you become a pickle you can never be a cucumber again. This is the line between adolescence and becoming an adult. All the rules change, the players (in supports) change, and the issues a young man or woman face as adults become, in many ways, more urgent, more real. Taylor has had some set-backs. He was living in semi-independent living for a year and a half. Toward the end, staff (who did not really understand autism) began to verbally abuse him. Those actions caused him to move home and retreat into himself. I have brought on a Calvary of supports for him to help him regain his (former) shine, but it is hard when the mysteries of the human psyche and autism combined can keep a person stuck in a challenging place.
Thank you Keri! Congrats on your THIRD film coming out Janurary 15, and best of luck on the reality show. We'll be keeping our fingers crossed!
Thursday, December 18, 2008
-Watching geese fly.
-Art exhibits featuring work by people with Asperger's.
- This morning, a mother I hardly know told me her fifth grade son has saved $10.00 so far for Riley's service dog, because he thinks it would be "cool" to have a dog at school.
Have a wonderful weekend!
Wednesday, December 17, 2008
"She's very snuggly."
Carrie fired back, "Snuggly? Really?"
Seems she didn't think of me as the warm, snuggly buggly type.
My response to her?
"I can f@#ing snuggle like nobodies business."
Now, there's proof.
Today at 12:15, HT said, "Do you want to snuggle for 15 minutes before I have to go to work?" His shift was to start at 1:00.
Get your heads out of the gutter people. Snuggle means snuggle. This woman needs more than fifteen minutes (usually).
Up we went. He left his glasses on so he wouldn't fall asleep.
Spooning, fully clothed, middle of the day, in a pile of warm cozy blankets on the king size. He honestly didn't have a prayer.
Five minutes after he was supposed to report for work, I woke up and glanced at the clock.
HT is NEVER late for work. He can be sick as a dog and will not call in. This type of slip is completely out of character.
He flew out the door, screeched out the driveway, and I lay there, warm and cackling,
"Take that,Carrie Link!"
Monday, December 15, 2008
On one of the first pages is a cartoon showing two people at a party, giving off "closed" body language. The bubble over their heads says, "How come no one talks to me?"
It is written for adults, but I picked it up, thinking it might explain a lot to Riley. She is often,"closed" in social situations. Shoulders hunched, head down,all folded in on herself from fear.
If Riley was okay with not being social, that would be one thing, but she isn't. She wonders all the time, why no one talks to her. She wonders why no one seems to hear her when she does try to chime in(head down, looking away).
My dream for this girl is not to be prom queen. I want her to have a couple of friends. Good ones, she can trust.
In the film Normal People Scare Me, there is a girl with autism who is in college. She says there, it's okay to be weird, and she's found her own "weird little bunch" to hang around with.
Riley will find her bunch one day. I know she will.
And they are so gonna love her.
Sunday, December 14, 2008
Riley sat on the steps watching, crying and worrying Santa would not come if our tree didn't look pretty. Seth kept getting yelled at for coming too close in bare feet.
HT, sweeping up broken Christmas bulbs said, "You know that donation Cindy made toward the service dog?"
Cindy is the friend who found the kitten downtown and convinced us to take her in.
"Tell her she needs to double it."
Saturday, December 13, 2008
Todd and I are both from Endicott, NY. It is a HUGELY Italian area, home to some of the kindest, most generous people and the best pizza in all the world, (evidenced by the fact that there is a Facebook group with hundreds and hundreds of members titled, "Endicott has the best pizza)."
Mr. Giovanni and I go waaay back to when I worked in local radio in Binghamton. Should be fun!
*Both photos from the Facebook site, Endicott has the Best Pizza.
There will be lots of pizza at the concert!
Friday, December 12, 2008
I've been running along, doing my thing, 1/2 hour walking on the treadmill, nothing too strenuous, and suddenly, overnight, I have excruciating pain in my left heel. While the orthotics helped the original problem, seems they've created an even bigger problem in the opposite foot. I can't put weight on it. The orthopedic assistant thinks it's heel tendonitis and has prescribed a boot.
A fricking boot.
'Tis so not the season for an orthopedic boot.
It feels like The Cat in the Hat, where cleaning up one mess only leads to another. I don't even want to think about what's next.
Wednesday, December 10, 2008
We knew unless we had Seth on board, the service dog effort would be a disaster. So much of the focus in our family is already on Riley. Would he feel left out? Resentful? The dog will have to be her dog. No one else is allowed to be more fun with it than her. So before ever mentioning the idea to Riley, I talked to Seth.
Sitting on the couch together on a day he was home sick from school, I started,
"Seth, I was reading about this place that raises service dogs to help kids with autism."
"Did you know they can actually train dogs to recognize when kids with autism are starting to have a meltdown? The dogs put their head on the child's lap,nuzzle them and basically offer comfort and change the subject, before a major tantrum happens."
"Wow. What kind of dogs do they have?"
"All different kinds, I guess."
"Any chihuahuas?" (Seth really loves Chihuahuas).
"I don't know. I mostly saw Labs and German Shepherds on the website."
He snuggled into the crook of my arm, and we sat there, quiet with our own thoughts. Suddenly he shot straight up, turned to face me, and said,
"Mom! We should get one of those dogs for Riley!"
"You think?"Of course he's on board! It was all his idea.
*Seth did a great job (above) decorating envelopes for the neighborhood fund raising mailing we sent out in November. Our community has been very generous. We are still waiting for the results from on-line donations thus far. Each and every person who has donated will get a personal thank you note as soon as I get the list. Thanks so much to everyone who has made a contribution to 4 Paws for Ability in Riley's honor!
Monday, December 08, 2008
Kelly Corrigan wrote The Middle Place and if you haven't read it, you should. It is so good. You will open the book and not put it down. You will finish in under two days and love every second of it.
Women. We have the power to hold each other up. No woman, aware of who she really is, could ever tear another down.
Thank you to the women in my life who support me on this path of motherhood. I love you all.
*The Middle Place will be out in paperback, Dec. 23rd.
Sunday, December 07, 2008
"What if people are mean to me? "
"What if there are people I don't know?"
"What if everyone makes fun of me?"
It was touch and go whether we would actually get her through the door. Then, a little girl from Riley's class arrived. Walking in with her gave Riley the courage to cross the threshold.
Riley is in this awful place where she really doesn't want her mom there, but can't quite regulate herself. Needing your mom when you don't really want her, sucks, period. I stayed, but hung in the background as much as possible. The birthday girl's family was very warm and welcoming. Thank God for good people. When I told them she has autism, you could see the light bulbs go off and the internal shifts take place.
"Ooooh! Autism. Not a brat. Great!" People are so kind when they know. Riley did need me, but only a couple of times.
There was a fashion show where they dressed up the girls and had them walk down the living room "catwalk" to thumping hip-hop music. Riley was the shyest little diva you ever did see. She skittered down the cat walk, shoulder's slumped, head down. But when it came time to strike a pose, she was all business.
That's my girl! Go, baby, go!
Saturday, December 06, 2008
Of course there is the possibility that something at school is setting him off neurologically? He does not seem stressed to go. He's one of the most popular in his class and he's doing fine grades wise. He likes his teacher. I'm wondering if there is a chemical cleaner or something perhaps involved? His tics have gotten progressively worse since school started.
We'll figure it out. Thanks to those of you who e-mailed to check in with us.
Riley got her yellow stripe today at the award ceremony after martial arts class. She absolutely beamed! No sibling clapped harder for their sister or brother than Seth did.
Their neurological systems may be fragile, but my children have strong, loving hearts, overflowing with kindness.
Such good kids. Both of them.
Friday, December 05, 2008
Thursday, December 04, 2008
He's also started doing a hand flappy thing. He's not copying Riley. She does not have a vocal tic, (just an arm one), and it's not a hand flap.
Compared to Riley's challenges, a simple vocal tic and a hand flap isn't a big deal. Seth has no behavioral issues. No learning issues to speak of. He has been on methylated B12 for a while and it really helps him. We note a marked decrease in his coping when he misses even one dose.
He's sitting here on the floor beside me, playing with his sister, and the tic is just going like mad. "Glunk, glunk, glunk, glunk, scuse."
And I don't quite know how to feel.Talked to his doctor today and she wants us to do a blood draw to rule out PANDAS. Ever hear of it? If you have a kid on the spectrum you probably have. Perhaps last month, on election day, he didn't really have pneumonia, but strep?
Today was his first day joining his sister's karate class and the teacher shushed him a couple of times before I finally whispered in her ear, "It's a vocal tic. He can't help it." Just a couple of weeks ago I barely felt the need to include his vocal tic on the sign up forms, it was such a non-issue. Other students shushed him tonight as well. He turned to look at me, helpless.
I hate this.
Wednesday, December 03, 2008
My favorite author of all time is Zora Neale Hurston. She was black. Other than that I have to admit there are not many black authors in my collection. I mean of course there's lots of Alice Walker. That goes without saying. And back in Virgina my book group read The Known World. Those characters (the "crazy" slave woman who wandered around all night?) will be with me forever.
Anybody out there want to buy me a book by a black author? Or loan me one? Or recommend one for me to buy myself?
I look forward to your suggestions.
(BTW, I've given away lots of copies of Zora Neale Hurston's Their Eyes Were Watching God, to a lot of not black people. But perhaps something more contemporary is in order)?
Tuesday, December 02, 2008
"Riley, what are you talking about?"
She'd been working her angle, trying to get me to fork over money to pay for a subscription to Toontown. It's an on-line video game, and you can only do so much if you are not a member.
As always, I told her to think about what she wanted and why she wanted it. My kids understand the law of attraction. They get how thinking about what you want from a needy place only produces more of what you don't have. They get how visualizing from a place of joy, from a place of happy anticipation is much more effective. They know I will never, ever cave in to a whine. They also know I'm a sucker for a happy child off in the corner, imagining the thing they want so vividly.
So what's the deal? Who hates us?
It took some time to get it out of her, but here's the scenario.
At karate a couple of weeks ago, the teacher asked, "What's the opposite of complain?"
Riley raised her hand and when called on answered, "Visualize?"
The teacher said "No. Not exactly." She was looking for the word, "compliment."
Riley internalized this, turning it into "people hate us and think we're bad because we visualize." She carried this around for over two weeks.
After assuring her that the karate teacher actually encourages visualizing, she seemed to feel better.
Can you imagine how frightening and confusing the world is in black and white?
I'm visualizing shades of grey and all the colors of the rainbow for Riley.
Monday, December 01, 2008
When: Saturday 12/27, 1-5PM
Where: The Kalurah Club
625 Dickson St. Endicott, NY
Cost: $20.00 (kids 12 & under free)
Featuring: Old Friends
PROCEEDS GO TOWARD OBTAINING RILEY'S AUTISM SERVICE DOG THROUGH 4 PAWS FOR ABILITY.
In honor of service dogs.
Leave a comment for your chance to win! Tell your friends!
*If you'd like to donate toward Riley's service dog, click here.
*You must be 21 to enter, but need not donate to win!
*You must enter by 2PM EST Thursday. Winners will be randomly selected and announced Friday afternoon.
*Alcohol cannot be shipped to these states:AK, AZ, GA, HI, KY, MA, MD, ME, TX and UT.