Allergies and Accomodations

Obviously I don't have much time to blog lately, but I saw a story on the news yesterday that got my goat.

The story was about all of the accommodations that are being made in schools for children with food allergies. Everything from peanuts to eggs to dairy to wheat... the list is almost unending.

In Matthew's class this year, there were so many serious food allergies. There were many foods that we just could not bring in to the classroom.

Was it a pain for me to have to make sure the allergic foods were not in his lunches? Yes. It sure was. But outside of it being difficult to offer him a lot of variety, we did fine. Matthew loves cheese, and was perfectly happy having cheese for lunch every day.

So I certainly am aware of the reality of the situation -- not only in its' scope, but also its' seriousness.

In the news report, a father was stated (and I paraphrase), "Why should 29 children have to alter what they do because of ONE child with an issue?"

OH BOY! Oh boy, oh boy, oh boy!!!

Let's take food allergies out of this for a minute.

Why should my child who has almost perfect behavior at school have to suffer because there are children who do not have perfect behavior?

Why should my child who has extremely high cognitive skills have to suffer because there are children whose cognitive skills are not as high?

Why should a child who is poor have to suffer because most of the children are not?

Why should children with perfect speech have to be patient with those with speech impediments?

Why should children who excel in athletics have to compensate for those who are lousy at athletics?

EVERY child has strengths and weaknesses. MANY children have special needs of one kind or another, from food allergies to speech problems to ADHD to autism to mental retardation. The law requires that a free and appropriate public education be provided to every one of them. Not just to the ones for whom it is convenient.

I hope the man in the news story has a perfect Stepford child. It is likely that he doesn't. But I still hope that the parents of his child's peers offer him more compassion than he is willing to show others.

Volunteer hopes to make big strides with walk

From the Greenville News, April 8, 2009

Like most moms, Susan Leiby believes her son is perfect. He's just a different kind of perfect.

Michael, 51/2, was diagnosed 16 months ago with an autism spectrum disorder.

"We knew Michael had speech delays. And we had suspected for a while that there could be something more," said Leiby.

The Leibys turned to the Upstate chapter of the South Carolina Autism Society for help. She said they offered educational classes to help her better understand where some of Michael's problem behaviors were coming from.

"There is never any training to be a mom, but much of it comes naturally," said Leiby. "But when you're the parent of a child with autism, that doesn't come naturally to anyone."

Leiby also got involved right before the society's initial Strides for Autism walk last year. She formed a little team from her family, dubbed it "Team Michael," and ended up being the third largest fundraiser in the state.

"I was really surprised, because I'm not a fundraiser," she said.

She is, however, an expert volunteer. Leiby doesn't work for pay outside the home, but she is involved not only with the Autism Society, but with Junior League of Greenville, the family advisory council at Greenville Hospital System, and in children's ministries at Christ Church Episcopal.

The society asked Leiby to co-chair this year's Upstate walk, and she readily agreed.

The goal for this year's walk, scheduled for April 25, is $100,000 statewide. Last year, 350 people turned out for the Greenville walk, and Leiby hopes this year will bring more.

"As a parent, it is really encouraging seeing all these people out there who care about kids like mine," she said.

Last year's walk was partly in the rain, she said, but that didn't discourage the families pushing strollers, pulling wagons and otherwise enjoying the 5K stroll.

As for Team Michael, they will be walking this year in all three walks across the state -- Greenville, Columbia and Myrtle Beach. As of April 2, they were in the lead as far as fundraising.

Michael is very high-functioning and is doing well in a regular kindergarten class at [his] Elementary, Leiby said. She said the teachers and therapists there were knowledgeable about autism. She said she is thankful to have ended up in the Greenville area at this time in her family's life.

"Before we moved here from the Washington, D.C., area, we couldn't even get a doctor to agree he had a speech delay," she said. "Our first doctor's visit in Greenville, we were referred to Baby Net. (Baby Net is a state-sponsored program that seeks to identify children with special needs and get them hooked into services before age 3.)

Leiby said the local coordination between doctors, service coordinators, schools, and support organizations such as the Autism Society, is impressive and makes life easier for families of children with special needs.

"I'm very thankful to be in Greenville. We are definitely where we need to be," she said.

Yeah Boys!

I just have to share how proud I am of Michael this morning. (And yes, I've told him too!)

Today is spring picture day at his school. Well will not wear any shirts other than turtlenecks. Every day he wears them. Even to soccer. (He won't wear the uniform top.) If there are no turtlenecks in his drawer, then he has "no shirts to wear".

I must admit that it would be nice to have just one picture of him in a nice shirt. One with buttons. Buttons that unfortunately he refuses to wear without LOTS of prior preparation.

Last night he agreed that he would wear "a shirt with buttons like Matthew's" (his little brother was wearing a polo-type shirt). YEAH! He agreed! I just had to get one on him.

Of course since Michael doesn't wear anything but turtlenecks, I didn't realize that he had grown out of all his polo-type shirts! (Note to mom, check first next time!)

But it worked out! Michael is wearing a very nice collared shirt! With buttons all the way down! He didn't argue about it at all this morning! He just said, "Mommy, I'm going to take this off right after school!" Sure! Fine! Whatever you want!!!

Then he walked in to the powder room to look in the mirror. When he came out, he said, "Mommy, I look handsome!"

Yes you do sweet boy. Yes you do. And Mommy is SO proud!

MEANWHILE....

The other day I showed Matthew a picture of a heart and asked him what it meant. He replied, "Mommy is going to a meeting!" I hope that means that he knows the work comes from my heart.

FINALLY....

When I left to go to a conference last Friday night (sort of like a meeting!), I gave both the boys kisses "to hold on to until I got back". We always do that. The peck on the cheeck. Michael said, "The kiss is going to go to my heart, and I will keep it there until you get back." So sweet!

Save the Date!

Mark your calendar! Save the date! Monkey Joe’s of has agreed to hold an

Autism fundraiser!

Date: Thursday, April 23, 2009
Time: 3:30 pm – 7:30 pm
Location: Monkey Joe’s Greenville
2437 Laurens Road near Old Time Pottery

50% of all admissions mentioning the fundraiser will be donated directly back to the South Carolina Autism Society by Monkey Joe’s!

Come join us for a great afternoon and evening of fun and fundraising. Monkey Joe’s is a 13,000 square foot arena of inflatable's, full concession stand, parent section, private party rooms & a toddler section.

Presented by Team Michael
http://www.theleibys.com/TeamMichael/

Chick Fil A

I found this video absolutely hilarious!

Holy Reading Batman!

Michael has had an amazing day.

First he went to his swimming lesson, and for the first time, completely swam under water. I mean about a foot underwater. He also swam all the way from the steps to the rope, which is equal to about half a lap. No floaties or anything. It was all Michael.

Then Michael was playing around with his keyboard. He has really picked up two more songs (right hand only) by listening and using play-by-numbers. He is making real music!

Then the big kicker was tonight. We sat down to read his weekly library book from school. I suggested he try to read a little of it. Maybe we could alternate pages. I figured I'd be helping him a lot. I also threw in that if he could read the whole book, I'd write his teacher a note telling her so.

I didn't figure I'd be writing anything.

I figured wrong.

Michael read the entire book by himself, with the exception of a few truly BIG words. And even most of those he was able to sound out.

What book was it? Duck & Goose by Tad Hills. Scholastic lists it as Grade Level Equivalent 3.1. Michael 5 1/2 years old and is in kindergarten. Below is a blurb about the book.

We are SO proud of him!

Snow in South Carolina

Yes believe it or not, we do get snow in South Carolina. Not much, and not often, but it does happen.

Monday morning we woke up to a nice snowfall. The airport that is about 2 miles from us registered 4.3". A town just south of here registered 6". Needless to say, schools were closed. Today they are closed as well, but I hear a lot of that is because a number of schools have no electricity.

Here is a picture of the boys in the snow. They were quite excited!

A Weekend Off

Once again I'm hanging out at a hotel for the weekend. It's been a rough couple weeks, and with Greg out of town all last week, I definitely needed a break!

Thankfully we have an awesome autism consultant we are working with.

Meanwhile the good news....

I was asked to be Vice-Chair of the Junior League's Technology Committee for 2009-2010. Which means that for 2010-2011, I will be the Chair. Most of what I do is managing a large part of the JLG website. Love it!

Today I was also asked to Chair the Red-Ribbon Committee at Michael's school for 2009-2010. I had fun working on the committee this past year, so I'm happy to work on it again. Thankfully it's not a real intense committee, so I won't become overwhelmed with work.

Oh yeah, and if you haven't sponsored Team Michael for Strides for Autism yet, what are you waiting for? Most important to me is to help an organization that has helped us SO much. But also, I am... try to guess... Co-Chair for the Greenville walk.

You'd think with so many "chairs" involved I'd be able to sit down a bit, but mostly it just all keeps me moving!

Which is why sometimes I need to just scrap the whole idea of a "chair" and go for a "bed"... which is why I'm sitting in a hotel right now!

Michael's Valentine -- The Whole Story...

For a couple days this week, we were driving a friend's daughter to and from school, along with Michael. The little girl's parents had to go out of town, and Grandma was keeping the kids. She and Michael are "friends", but these couple days were really neat.

They both wanted to sit in the "way-back" of the van together. They were chatting the whole time. She would ask questions, and be VERY patient as Michael did his best to answer, using his almost robotic speech pattern, filled with stammering. It was so amazing hearing him working to get the right words out, and her being far more patient that one would expect from a 5 1/2 year old.

Yesterday afternoon when they got in the car (and in to the "way-back" together), Michael said, "Audrey, I have something for your mom." He told her that he made it in speech today. He opened his speech folder and pulled it out.

It was a Valentine. And it said:

To Audrey's mom who is away.I hope you come back to town.Love Michael L.

I just about cried. I was so proud of my little guy. But I wanted to know the circumstances of the Valentine. So I emailed his speech therapist.

Apparently they were working with the book "Somebody Loves You Mr Hatch." As the teacher said, "The children were told that the Valentine they make needed to be for someone that was lonely, someone that needed some cheering up,or for a special person. They were told not to make it for themselves or a pet. He knew exactly who he was going to make his valentine for. He was excited to write and knew exactly what he wanted to say."

Well, Audrey's mom was out of town because her Uncle died. Michael did not know the reason. But it seems he could still sense that she needed some cheering up.

Last night, when Audrey's mom got home, she called to thank me. She absolutely loved the Valentine. In fact this morning she wrote to me, "I am so touched. I will treasure it always. I am amazed at how in tune he was to audrey's feelings. Because Audrey's didn't have a clue anyone was dead, sick, anything. She only knew I was going out of town. But Michael knew she was sad about it. Just from that short car ride. And this email is just another reminder that God can bring good out of tragedy. I am so happy, smiling for the first time in a week!"

Michael may not speak as well as his peers. He may struggle to get the words out. But inside he seems to feel such compassion. It is amazing to see this opportunity he had to let it shine.

I am so proud of him!

Sweet Michael

The past two days, we've been driving a little friend to school and bringing her home while her parents are away. (Don't worry, Grandma is at the house!) Michael and this little girl have been having so much fun riding together in the car.

Today at pickup, Michael said to her, "Audrey, I have something for your mommy."

I was curious to see what this "something" was!

He reached in to his backpack and pulled out a picture he had made. On it was written:

To Audrey's mom who is away.
I hope you come back to town.
Love, Michael L

He made it on his own at school. I still need to contact the teacher to see what all went on while he was making it.

I thought it was just so kind and sweet, I just about cried!

Matthew's Song

Matthew was singing a new song today. Old tune, new words. It went like this...

Michael loves me
This I know
For my Mommy
Tells me so...

TOO CUTE!

Strides For Autism

Dear Family & Friends,

Here in South Carolina, we are again gearing up for the South Carolina Autism Society’s STRIDES FOR AUTISM.

Autism affects 1 in 150 children today. The rate for boys is 1 in 94. One of those boys affected is our son Michael, who was diagnosed in December 2007. Through lots of hard work and therapy, Michael is doing well. Like any child, Michael has BIG PLANS. Please watch Michael’s latest movie at http://www.theleibys.com/videos/Michael2009.wmv to learn about some of his BIG PLANS!

The purpose of the South Carolina Autism Society (SCAS) is to enable all individuals with autism spectrum disorders to reach their maximum potential. This is accomplished by:

· Providing information, assistance, and resources to families of children with autism;
· Providing support for South Carolina based research and development;
· Promoting and raise awareness that one in every 150 births in the United States today is a child with autism and 26,000 of those children and adults live in South Carolina; and
· Educating professionals and the general public.

Thanks to many generous donations, last year, TEAM MICHAEL was the 3rd largest STRIDES fundraiser in all of South Carolina. This year, TEAM MICHAEL is setting our goal even higher. We will not only participate in the walk in Greenville, but we will be “Striding Across South Carolina”, joining the walks in Columbia and Myrtle Beach.

We ask you to support Michael and the more than 28,000 in South Carolina living with autism. With this weakened economy, your donations are even more important. Due to state budget cuts, services for those with autism have been slashed significantly. And some services are disappearing altogether.

What are the ways you can you support us?

· Sponsor our team by contributing online at http://www.stridesforautism.org/participants.php?id=10. (Contact me for information on contributing by check.)
· Become a Corporate Sponsor. Sponsorships begin at just $100, and in-kind donations are welcome! (Contact me for additional information on Corporate Sponsorships.)
· Join us at STRIDES FOR AUTISM! (Contact me to find out more!)

Many thanks to everyone who is helping Michael and all those with autism achieve their Big Plans!

Sincerely,
TEAM MICHAEL
(Susan, Greg, Michael & Matthew Leiby)

Hold Your Nose

This afternoon, Matthew and I were in the family room. He suddenly grabbed his tushie, and with a very concerned look on his face, said:

"Mommy, you no smell me!"

Then he repeated it again. "Mommy, you no smell me!"

I'm sure it's obvious what was going on.

Then he said, "Only Daddy can smell me!" I'm all for that, but unfortunately Daddy wasn't home.

Finally, he turned around and said, "It went SQUISH!"

Ah yes, life in a house of boys...

What is Wrong With People?

The news lately has been so sad...

Locally, a husband brutally killed his wife. The police were notified after their 6 year old son was found walking around outside, covered with blood.

In California, a man who was recently laid off killed his wife and four children.

In Australia, a man suddenly stopped while driving over a bridge, and threw his four year old daughter over the side, in to the river below.

I know that these are difficult times for a lot of people. But there is nothing so difficult that the only way to overcome it is kill family and leave children scarred for life.

If nothing else, walk away. Turn the children over to a trusted relative or friend, or by golly, even the government.

But all this tragedy is so unnecessary and so sad.

A New President

I was interesting watching the inauguration yesterday from afar. It's hard to believe this was the first one where I haven't been in the DC area. But given the crowds, I'm kind of glad I wasn't!

Although many of my political beliefs differ from those of President Obama, I totally accept and respect him as our President. I think it is great that, as Michael Steele (former Lt Governor of Maryland, and chairman of GOPAC) said, we have a role-model for our children who is educated, professional, committed to his wife, and devoted to his children. A much better role-model than the athletes and rappers from years past.

Best of luck to President Obama and his family in the years ahead.