Teaching The Boy

I will be ready next time.

2012-01-27T14:06:00.000-06:00

Today we did what we always do on Fridays, we went out for lunch with some of our favorite friends. And for the first time, I was aware someone was very aware of us.

Normally I am oblivious to everybody around us, and I really don't worry too much about what other people are thinking of me and my little family and our friends. I have made it a point not to make too much eye contact with other people while we are at lunch because if they are disapproving or curious I just don't think we should have to deal with it; that's their problem. So I usually just have a great time, laughing and eating and enjoying myself.

But today somebody made a special point of staring. They must have been doing it for quite a while because like I said, I never notice. It was like this person and her friends at her table, which was about ten feet from ours, wanted to make sure I knew they were watching us. At first I thought, maybe they know us and I panicked for a second because at a quick glance I didn't recognize any of them. Then I started to feel uncomfortable, and I realized that this is what that person wanted me to feel. Because the look of... disapproval and disgust on her face, and on the faces of her friends that kept turning around to look at us, was pretty clear.

"Do you know me?" I mouthed to her. She paused for a second and glanced over her shoulder to see if I was talking to her. She looked back at me again. I repeated, "Do you know me?" She shook her head. I mouthed back, "Okay, just checking, because I saw you looking at me for a while." She just kind of raised her eyebrows and pursed her lips. We were getting ready to leave, and I wondered if I should go say something to this person, but frankly, I didn't know what to say.

Now, you would have to be a very sheltered person and not go out in public much not to realize there is something very different about my son. He wasn't being loud, certainly not any louder than other kids in the restaurant. My little guy is very gregarious, laughs a lot, and acts just plain goofy sometimes. It's pretty clear there's something different going on with him, that he isn't misbehaving, that he has his own spin on things.

As we were walking to the car, I pondered what was so disturbing to that woman in the restaurant, what could have made her stare at us, what made her friends keep turning around, all looking so.... put out by our presence. Was it that they thought my son wasn't "acting right" and that my husband and I weren't being good parents, weren't being strict enough with him? Although this is probably the most likely answer, it seems pretty unwarranted on this day.

I am probably being a little paranoid here, but something just doesn't make sense. Since I've not encountered this type of attitude before (although it could be around me all the time, like I said, I am purposely oblivious to typical people's reactions), I really started to wonder. Could it have been that the people at the other table didn't think we, as a family, should be out in public because my son isn't "normal"? That we had no business going out for lunch where everybody could see us? That they preferred we stayed home, out of sight?

Since I don't know the answer and never will, I thought, I will be ready next time. Next time, I will get up from my seat, walk over to the table of gawkers, and introduce myself. I will say, "I'm sorry, I saw you watching at us and I figured you must know me but I'm afraid I can't place you." If they have the decency to be uncomfortable at that point, I will just apologize and say, "My mistake, enjoy your lunch." But if they answer back with anything -- ANYTHING -- that has to do with my son or my friends I will make sure to let them know that these children have autism, and they love coming to lunch. And they have just as much right to come to Cracker Barrel and anywhere else they like to go. And I will tell those people that they'd better get used to it, because we are not going to keep our children home. And then I will call my little guy over and I will introduce him, and I will say, it was nice to meet you all.

Because I am going to show my son we have better manners than those that would stare and be disapproving of a seven year old boy who is laughing and enjoying his mashed potatoes and being out on a sunny day for lunch with this friends.

I will be ready next time.

And we fought back.

2012-01-16T17:47:00.001-06:00

Remember yesterday when I talked about Amelia? If you've been following this story you know how hard people in the disability community have been working to let the country know about this family's struggle to get an organ transplant operation for their little girl. The hollering is paying off.

Sunday Stillwell's online petition at Change.org = ~~17,000~~ 19,000+ as of 01/17/12, 2.00am

USA Today: 'Team Amelia' backs transplant for special needs child

Huffington Post column by Susan Senator

Huffington Post column by Lisa Belkin

Keep hollering. Share the family's story. "Like" the Facebook page to support Amelia. Leave a comment on the Hospital's Facebook page. Sign the petition at Change.org. FIGHT BACK.

A Fighting Chance

2012-01-15T15:33:00.000-06:00

Let's cut to it, shall we? A little girl named Amelia has Wolf-Hirschhorn Syndrome, "a condition that..results in severe developmental retardation, a characteristic facial appearance, and may include a variety of other birth defects. includes developmental retardation and other birth defects." Amelia's mother, Chrissy Rivera, blogged last week about her daughter's need of a kidney transplant, and how she was told her daughter was being denied the surgery at Children's Hospital of Philadelphia because Amelia is "mentally retarded". According to Ms. Rivera, no other medical reason was given, or necessary in the view of the transplant specialist. The family said that they had people who would donate a kidney to Amelia, but she was still denied.

In the disability community, there has been an uproar. The Children's Hospital of Philadelphia's Facebook page has had non-stop comments, imploring the hospital to reconsider. Sunday Stillwell over at Adventures in Extreme Parenthood started an online petition asking others to support Amelia, and you can find it here. Please consider adding your signature to the (as of this writing) 12,000+ people who have taken the time to show their support.

So let's take a look at this issue. I have spent the last 48 hours trying to convince myself that this is rare, that this is not how our medical institutions operate, that people with intellectual disabilities are not routinely denied life-saving care and organ transplants. I have Googled everything there is to Google. I have looked at different countries, different governments, different decades... and now I have to face what I have long feared -- that people who are considered "mentally retarded" have time and time again been denied, or transplants have not even been suggested as a solution to failing organs. Sometimes there are so many physical complications that a patient may not survive the procedure, but more often than not, studies have shown that most (oh please, tell me there are some out there) most people with "mental retardation" - even in the United States -- are not presented with the option of a transplant even if it could save their life. I found scholarly papers by transplant professionals in all parts of the world who support transplants for people with intellectual disabilities, stating ethical and moral grounds, as well as viability of success at least equal to those with "normal IQ".

Here's what I have been trying to process for the last two days:

1. As far back as I can research, I discovered that many in the medical profession believe it is a waste of resources -- organs, professional time and effort, etc. -- granting transplants to people who have been deemed "mentally retarded".

2. It seems that most people feel that individuals like Amelia, those with intellectual disabilities, should be entitled to have a kidney transplant, especially because one is being provided to her by a family member.

And here's what has keeps me up at night:

1. There are people who believe individuals with lower than normal IQs do not have the right to life-saving medical procedures involving organ transplantation.

2. There are people who believe individuals with lower than normal IQs have the right to life-saving medical procedures involving organ transplantation if there is an organ available from the family.

3. There are people who believe individuals with lower than normal IQs do not have the right to a spot on a waiting list for a compatible organ donor.

4. There are people who believe that my son, along with the other 100+ individuals I know who have intellectual disabilities are not entitled to a life-saving organ transplant under any circumstances.

5. People with intellectual disabilities around the world have little to no access to life-saving organ transplants.

This has been happening for years and years and years. This is not politics. If you think this has anything to do with upcoming "Obamacare" changes, you're a fool. This is about discrimination and always has been. There are people who think children like mine, and adults who were once children like mine, do not deserve to live. Sound overly dramatic to you? Go read Amelia's story again. She wasn't even given a fighting chance.

At present, there are very few places on earth that would help my son if God forbid he ever needed a new liver, a new kidney, a new heart. My son. My little boy.

What about your children? Your friends' children? Which side of the line do they fall?

Please help us help ourselves. "You and I have got to do for you and I." Fight back. Holler and scream to anybody you can find about Amelia and your children and your friends' children and adults who were once children like ours. Call the newspapers, the television stations, the hospitals, your members of government. Tell everyone you know about Amelia, and how it is wrong that people with intellectual disabilities are denied life-saving medical care. Fight back.

And become an organ donor, damnit.

"It's not work, it's a GAME"

2012-01-09T11:21:00.000-06:00

Trying to convince The Boy that not everything we do at the table is work. Sometimes there are things that are called "games", and even though it might look like work, this is gonna be fun!

Okay, he's not buying it. So I altered our game Ned's Head a little bit, tried to make it more entertaining by sticking things in this strange contraption that the little guy might actually be interested in finding just by feel. He didn't have a lot of interest right off the bat in feeling around for the "dirty diaper", the "tongue", or the toy vomit that comes with Ned's Head. Kid is smart. So I stuck some animals, plastic fruit and cars in there, and wrote my own cards for us to use. He is actually starting to look pleased when I haul the box out to play. I think we will work up to the diaper, puke etc. and extra large used q-tip that came with this thing, just so he can play with other gross little boys sometime who like that kind of stuff.

Have you played Ned's Head?

Glad I didn't have to resort to putting his favorite things in there, like cookies, biscuits or mac & cheese, no matter how appealing that may have been for him to find. That would have made a royal mess.

It really was a Special Amazing Christmas Party.

2011-12-28T21:46:00.003-06:00

A few months of planning...

A few weeks of fundraising...

And with the help of many friends, families, fantastic sponsors and supporters we pulled it off.

The Nashville Special Needs Kids Playgroup had our first big holiday event a few weeks ago. On behalf of all of my friends in the Playgroup, thank you to everyone who helped make this happen.

We had a fantastic turnout -- 165 guests came and ate, visited, and laughed. The luxury of being comfortable at a big party, just being ourselves and letting our kids be just who they are and all of us having a great time, well, that's a rare thing.

We could all be different... together.

Happy holidays and the very best to you in the New Year.

So. Much. To. Do.

2011-11-22T12:38:00.000-06:00

Still there? I'm still here. Still homeschooling, and I might add, with some wonderful success lately. The Boy seems to realize that just because we are sitting at the table with books open and pencils in hand that it doesn't necessarily mean this has to be painful. Rewards for practicing spelling, moving on to +9s and learning to read every word in the sentence before jumping to a conclusion have been: time to watch elevator videos on youtube, little oreos, and being allowed to run up and down the livingroom for three minutes straight without interruption. The little guy would still prefer we forgot about doing any homeschooling altogether but there is less gnashing of teeth lately (for both he and I). Progress!

So what has kept me so busy lately, aside from academic lessons? Thinking about next year. Thinking about how to make positive change happen in our community -- what to do about much needed mandated insurance coverage for individuals with autism in our state, what to do about private education choices in our county and beyond, thinking about affordable and safe assisted living facilities for those in need of it most, and how to improve the lives of those living with autism in general....
So. Much. To. Do.

But first there's something that really needs to be addressed, I think. Ours is such a fractious community, we all have different ideas about what we wish for and how to approach change, how to better all of our lives. But I think we need to unify and agree on basic ideals and the messages we want to send and the changes we need to achieve. Health care. Education. Living conditions. Employment opportunities. Respect. Acceptance. These are my priorities for my family and for my friends' families and for everyone in the Autism Community. What are yours?

To the Naysayers

2011-11-06T11:28:00.000-06:00

"Autistics Speaking Day"

2011-11-01T12:17:00.000-05:00

Today is "Autistics Speaking Day". To find out more about it, go here.

To read an interesting point of view about "Autistic" versus "people with autism", go here.

And now for just a sprinkling of what's being spoken by my resident Autistic son today:

"Have breakfast!" (These are his first words today and EVERY day.)

"There's Mom!"

"Have a snack?"

"Go see Ms. Kristen and Caleb today!"

"Doesn't work." (Sock was not on properly; Hanes label was on the top of the toes, which is apparently unacceptable.)

"Have a sip?"

"Have a bath..."

"Go outside!"

"Two plus eight is... TEN!"

"BYE MOM!"

There are a million more things The Boy wants me to know, I'm sure. And we're getting there.

I am so very lucky.

The season of giving.

2011-10-31T14:45:00.000-05:00

Earlier today I posted this on Facebook and it seems to have struck such a chord with people I am going to plunk it right here, too. Probably preaching to the choir with this but feels good to post it anyhow. Please feel free to share, mail, read it aloud as you go door-to-door tonight, whatev.

****

My little banana in 2008 at age 4.

Happy Halloween! And listen -- if a kid comes to your door tonight and doesn't say "Trick or Treat", or needs help understanding they are to take only one piece of candy from the bowl, or seems to really, really want to come in your house to see what kind of good junk y...ou have in there and has to be physically restrained by his or her parent from crossing your threshold, please just smile and say, "No problem at all, Happy Halloween!" Because odds are that child has autism and might not be down with this whole Halloween thing, and might need a bit of practice, okay? And the kid's parents will thank you for being a kind and patient person and it's Halloween for godssake so be loose and happy!

Thinking about homeschooling, hmm?

2011-10-18T14:20:00.000-05:00

It's that time of year again.

Right about now, parents of children with autism have had a chance to send their kids off to school and have had a few months to see how they'll do in a traditional setting, some in an inclusive classroom, some in special ed, some have a mixture of both. And some families have come to realize they are not happy with how they perceive their children's treatment by administrations, teachers, school bus staff, and classmates.

Don't get me wrong, I'm sure there are many parents and kids with autism that are happy with their school situation all over the country... I don't know a lot personally, maybe one or two, but I am sure there are more out there. I say, if you have a good IEP, have an administration and school staff that listen to you, co-operates with you and actually implements appropriate, comprehensive services for your child and your kids are getting a good education then you are very lucky and I wholeheartedly support your decision to keep them in school, what more could you ask for?

But for those of you who are wondering about it, let me tell you, homeschooling works for my family. My husband and I wouldn't have it any other way right now, it is exactly what we think is right for The Boy at this point. We spend many hours at the homeschool table with him, and could absolutely not teach him successfully without the help and skills of Ms. One Hundred, The Boy's main BCBA (ABA therapist and former Special Education teacher) who writes and helps to implement The Boy's curriculum. We also have tutors, both inside and outside our home. We pay through the nose for all of these services and although we may be stuck in this rinky dink house for many years to come and lug around credit card debt, these services are vital to our little guy's education. On top of the hours our son spends with these therapists and tutors we spend about 2-3 hours a day with his studies. And on top of THAT we try to make sure he has plenty of socialization and extra curricular activities like the Jr. Dolphins (a pre-cursor to Special Olympics swim club), Saddle Up (therapeutic horse back riding), and playdates and events with our special needs playgroup. We are constantly running here and there but it's okay. We love our life and consider ourselves very lucky.

Everybody has their own reasons for homeschooling, and I've certainly got a few. I've talked about these reasons before in this space, and here are links to my past posts. Homeschooling isn't right for everybody, but it's right for my family. Maybe it's right for yours?

Why I Homeschool Part 1

Postscript to Part 1

Why I Homeschool Part 2

A response to Part 2

Why I Homeschool Part 3

Why I Homeschool Part 4

Why I Homeschool Part 4 (cont'd); Ms. One Hundred

The Cons of Homeschooling

$14 on the 14th

2011-10-14T08:30:00.010-05:00

**UPDATE** After a tremendous, wonderful day we are just $146 shy of our goal.

Can you help?

www.giveforward.com/SpecialAmazingChristmasParty

For those of you who know me in real life and also thru Facebook (and not leaving out my Flickr & Google+ friends!) you may already know that October 14th is my birthday. And to mark the special occasion I am asking for one thing: $14.

I'm planning a big party, you see.

I founded the Nashville Special Needs Kids Playgroup back in March 2010, and we are made up of 40+ amazing families. We are an inclusive group, but the vast majority of us have children with autism. We play together, we struggle together, and we understand each other in ways that others, even our extended family, cannot sometimes. And since before the Playgroup even existed I've wanted to throw a big Christmas party where families with children with disabilities can celebrate the holidays. I mean, I want to throw a BIG party. So the planning began back in the Spring of this year -- we have a fantastic venue donated to us, we are getting a smokin' deal on food, there will also be snacks our kids love like cotton candy and popcorn, a craft table, an inflatable bouncy house, and of course, Santa.

Well, you know these things cost money. And our special needs families are stretched to the limit with expensive therapies and doctors' appointments and co-pays, I just couldn't ask them to open their wallets to help pay for this -- besides, they're the guests of honor.

So I have asked my typical friends and family to open their hearts and help us find a way to come up with the funding we need, and our goal is $2,500. We are inviting 150 guests and we want to give them the best holiday party they've ever been to. Some of them have not been invited to a big party before, and some of them have attended big parties.... and maybe weren't asked back. We're definitely a different kind of people, don't necessarily fit in very easily. But at this party, everyone will definitely fit in, because we'll all be different together!

We are more than half-way to our goal, with $1,705 raised. Maybe today is payday for you, or maybe you were planning on ordering a pizza for dinner. Here is an opportunity for you to do much more with your $14 than order take-out tonight -- today, October 14th if you are able to make a donation of $14 to our Special Amazing Christmas Party Fund I can promise you it would mean the world to me and to all of my Playgroup families. I am so lucky to know them. And your $14 gift to these sweet friends would really be the icing on my birthday cake.

Merry Christmas. And thanks for your support.

To make a welcome donation, find out more about our story and to see pictures of some of our beautiful families, please visit: www.giveforward.com/SpecialAmazingChristmasParty

*******

From a dear playgroup friend:

"We have a 4 year old boy that was diagnosed with Autism in 2010. He had and still has some severe behavior issues which basically left us aside from the “typical” world. A year ago we felt lost, desperate and sad. We felt we had failed as a parent. We felt lack of acceptance by most parents of typical kids and felt like we were alone. I searched and found this wonderful group, met the most amazing parents and kids. We have literally a play date every weekend, which both my kids love. We've learned so many important things for our son while having fun at the same time. It's just been a true blessing in so many ways."
-- Carolina, mom to Josh and Gabrielle

Mr. Independence

2011-10-11T09:00:00.001-05:00

The Boy is getting assertive. Not bossy, he has always been bossy (that's why I always fought ABA therapists that told me it wasn't "functional" to teach him 'please' and 'thank you' -- damn right those words are functional, especially around my house, and it takes the edge off his bossiness sometimes) but now he is speaking up for himself in new ways.

While we were out for lunch the other day I did what I always did. I asked him, "Do you want a muffin and yogurt or do you want macaroni and cheese?" Just perfunctory, really, he always wants the same thing, a muffin and yogurt. "MACARONI!" he said and then dove for the kids' picture menu and pointed and said, "and MASHED POTATOES!" Wow, that took me a minute. I know he loves those foods but macaroni and cheese are usually suppertime requests and it was just noon. "Okay," I told the waitress, "he'd like macaroni and cheese and mashed potatoes, and some apple juice." The Boy spoke up again and said, "ORANGE JUICE!" I glanced at him for a second, kind of in shock, and he said, "Have orange juice, please Mom?"

My husband and I looked at each other and smiled, because this was the first time it seemed like he could say, "I can order for myself, Mom, I'm seven years old now." Other than his great height and forever shrinking pant length, this was solid proof to me that the little guy is indeed growing up. Makes me proud and a bit wistful at the same time.

And A.skate finished.....

2011-10-02T00:30:00.000-05:00

Seventh! That means A.skate is a finalist in the PepsiRefresh Project, and on October 23rd they will announce/confirm the audited winners and if A.skate can hold a position in the top ten they will receive $50,000!

Thank you to all who voted and supported this fantastic Autism organization! Via the internet we really can move mountains sometimes. Good to know. :)

The Last Day!

2011-09-30T12:01:00.000-05:00

Today is the last day to vote for Askate for the $50,000 prize in the PepsiRefresh Project! They've got a *real* chance to stay in the top 10 and win the funding they will need to keep bringing skateboarding to kids with autism like mine all around the country.

Can you please help them to continue making a difference in the lives of our families?

Thank you, as always, for your support!

*****

Super easy to vote at www.refresheverything.com/askate -- click the link, then click "Vote for This", then "login with Facebook" and you're done. Remember, it's FREE!

If you want vote for them without Facebook, just takes a couple more seconds to "Sign in with Pepsi".

You can also use an extra vote by texting 108814 to 73774.

Helping A.skate

2011-09-22T23:33:00.000-05:00

Not too long ago I told you about a wonderful organization called A.skate. Crys Worley and all her volunteer friends came to Nashville and showed our kids the awesomeness of skateboarding. A.skate travels around the country meeting kids with autism and putting them on skateboards at no cost to families; A.skate pays for all of their expenses out of their own pockets.

Right now A.skate is in a battle for a top ten $50,000 spot for a PepsiRefresh Grant. Please help this amazing Birmingham-based organization continue their great work in the autism community, travelling the country and teaching our kids to skate, by voting every day for the next ten days. This is one of those rare opportunities to do something small that will affect so many. Please help spread the word, repost on your Facebook pages, on your blogs, on your twitter, and to your friends via email and vote for A.skate. If you're a Pepsi drinker even better -- there are bottles with bright yellow caps with "Refresh Everything" on them, and those caps contain PowerVotes, making your time and efforts go even further and helping A.skate secure a win. Thanks for all of your help. Now go vote!

Big words.

2011-09-16T03:01:00.000-05:00

I'd better get busy, then.

Focus.

2011-09-15T03:46:00.003-05:00

It is just after 2am and I am sitting on my back porch in the pouring rain. I am at our worn patio table, under a bright green patio umbrella with little lights with my laptop and a diet coke. It's kind of chilly and I'm shivering a bit but the rain sounds nice. I am happy as can be. Although I can hear something that sounds suspiciously like a frog croaking, I am not too crazy about that, I don't know where it is and I don't like the thought that it might be near my leg. Anyway, I'm feeling pretty good.

Have you ever read A Prayer for Owen Meany? I can't believe I read it for the first time almost 20 years ago. I've probably read it ten or twelve times, I just love it. The book (not the bastardized Simon Birch movie version that I refused to see, but the BOOK) meant a lot to me, it spoke to me about purpose, and "being of use". The character that John Irving wrote about so lovingly, Owen Meany, had a purpose. I have always wanted to be of use, to have a direction and a calling. I have been looking for that for a long time. I realize now that we all can be of use, even in a small way, if we just try and focus a bit on what we can offer the world.

For the past week I have spent every late night out here on the porch, while The Boy is sawing logs upstairs and my saint-of- a-husband snoozes on the couch and a football game re-runs on the tv to keep me company through the screen door. I sit at my laptop trying to focus, and to figure out how I can do something that will help my friends and my community. Specifically these days, trying to figure out a way to help my autism friends and the autism community. I'm in it for life, I tell people. My kid has capital-A autism. I am not passing through. So it's important to do what I can to make things better for all of us here in AutismLand.

Here's what I've been doing recently: scheming. I wake up scheming, I take showers scheming, I eat lunch scheming, I talk with friends and I shop for groceries and I homeschool and all the while I'm scheming. And the target for my schemes and plans and wishes for the past month has been the Autism Society of Middle Tennessee.

Your local Autism Society needs you more than you can imagine. They are underfunded and overstretched, and the people that work there do their own share of plotting and hoping and working hard, all on behalf of me and you and our friends in the autism community. Do you know how much your local Autism Society has in their operating budget? The Autism Society of Middle Tennessee had expenses totalling $154,000 in 2009; I know because I looked it up. Doesn't seem like enough to do much more than keep the lights on and the rent paid, but they put on workshops and are there when families need information and guidance. It's my understanding that now in 2011 they have a full-time Executive Director, an admin person, and three 10-hr a week part-time parent contacts that take calls from the public looking for information on autism spectrum disorder. That's it. They don't have the person-power or funding to do as much as they'd like to, clearly. So I've been trying to figure out ways to help.

Have you called your local Autism Society recently? When I called and offered some suggestions they were very polite, but how to carry out my schemes and plans, even if they are the best schemes and plans in the world, when they are so understaffed and with just enough in the coffers to get by?

I've found our Executive Director, Amanda Peltz, to be extremely open and willing to hear me out on my ideas, especially when she saw I was willing to put some time in and help make things happen. So far we've gotten a few things on the table, like a special Weight Watchers meeting just for caregivers of people with autism (though we have to find 25 paying participants to get it up and running); the ASMT has just made the announcement in their most recent email newsletter, so we'll have to see how that pans out. But when I suggested an Autism Society Day at our local botanical gardens running a train exhibit, Amanda made it happen. When I suggested a few ideas for upcoming workshops for families, Amanda suggested I sit on the Advisory Committee. When I told her I thought we could have a public showing of an autism-related film at a local movie house to raise money she thought the idea was a good one and we're looking into that. We have spoken about many ways to make things better for our community and she is always open to hearing more. I have a surprise or two for the ASMT, a few things I have been working on late at night here on the porch, and I can't wait to show them. The key, I think, is that Amanda and others at the ASMT know that I will do everything I can to help make things happen, that I won't just drop ideas at their doorstep, that I will try to do my part to help. Will you?

If you are like me, a lifer, please give some thought on how to pitch in at your local autism organization. Why not grab a couple bottles of wine and some friends one night and stuff some envelopes for an upcoming fundraising drive? Maybe sit on a committee, or plan an outing?

If you want to help your autism friends out in the real world, offer to help with something you're good at your that you like to do -- if you like to cook and talk with people, what about offering to set up a monthly autism-family-friendly potluck at your church or community center? Or a bake sale to help raise some money? Or sponsor a Special Olympics team that might welcome a few kids with autism, or even be a coach?

Lots of things we can do. Just takes a little effort, a little focus. And if you help your local Autism Society or other organization today they will be there to help you and your family and your friends tomorrow. We lifers have to stick together.

Time to go in. I think that frog might be back.

The back porch on a warmer, drier evening.

Math these days...

2011-09-14T01:48:00.000-05:00

Among the many things we are doing for homeschool each day there is good ol' Math. Here are some things we are working on at our house:

Math worksheets, always a staple. The Boy even likes them sometimes, we use them to occupy him while we're waiting for supper at restaurants. We are currently working on +7.

Counting money -- In this example we show the little guy an amount and say, "Give me 40 cents." Sometimes he is a smartass and hands me the paper with 40 cents written on it. Sometimes he wants to give me 40 cents all in pennies, barring that, he will try only nickels. We now have him giving us four dimes, but very soon we are going to demand mixed currency. All hell will surely break out but he'll get over it. He can pretty accurately give us change up to $1.00, although we are still calling it 100 cents.

Flash cards, with the answers on the back. This is very important. The Boy loves to see that he was right, or sometimes to even point out that you might be wrong. Thankfully, I've got my addition down and I am usually the victor here.

This analog clock is used in two ways, expressively ("What time is it?") and receptively ("Show me 3:00"). We have pretty much mastered on the hour and on the half hour and the quarter hour seems to be a piece of cake. This has taken us a very, very, long time. One of us used to get teary-eyed at the thought of time-telling lessons because it was No Fun At All, what with the bellyaching, and I'm pretty sure that was me.

"Write the time." We haven't really started this yet. I think it will go along okay.

"Give me 10:30" in digital form....

....and analog form.

Patterns, all of them -- ab, abab, abb, aab, abc.... "What's next?" we'll ask him. Little guy took a while to get this at first but now he seems to hum along (if he's bothering to look at the table at all, this might bore him, I think, but he's got to prove he's mastered it before we can move on to something else).

"Give me more." "Give me less." Both in numerical form and pictures. Pictures didn't work out so hot. We have since gone to physical objects in large piles and small piles so he can differentiate between the two.

There are a few other things we are doing in math, but this is pretty much it. All of these materials were graciously made and loaned to us by Ms. One Hundred, god love her. Very handy having an ABA therapist who was also a Special Ed teacher.

And just because I want to show you a sweet picture, here is a shot of Dad and the little guy playing "in the car". Even in the house the kid is a backseat driver. "Turn left!" he shouts. Dad usually goes along with it.

I'm still here

2011-09-13T09:00:00.001-05:00

I am thinking there might be one or two people out there who are wondering where the heck I have been. I'm still here. Still homeschooling. And OH I have been busy.

The new school year has started and we are working on old favorites like Math, Reading, Language, Fine Motor Skills, Social Studies, etc. I think I will try to come back tomorrow and show you some things we've been doing. The little guy's schedule has been jam-packed with ABA, school work, a play-language study at the local university, therapeutic horse back riding, and starting tomorrow, the jr. swim club for Special Olympics. And of course, playdates.

Big news around here is that I am gearing up for a great Christmas party for our Nashville Special Needs Kids Playgroup. Writing fundraising letters to potential sponsors, finding vendors, and basically panicking that I've got less than three short months to get it all together.

Back in 2009 I read about the most incredible non-profit in Canada -- it's called Jake's House, an Autism organization delivering a ‘whole family’ approach with support, information, and events. One of the great things they do is put on a big holiday party every year, and after reading about those parties that has been my goal since I started our Playgroup in 2010. Whenever I wonder if I'm doing the right thing devoting all this time and energy to our events and the planning of this year's holiday party, all I have to do is go back and read this article and think about our own group's families and know, yep, it's all worth it. And maybe one day our parties will be as big a success as Jake's House throws.

If you are lucky enough to live in the Toronto area and can attend the annual party at Jake's House please take some pictures and let me know how it went. I bet you and your family will have the time of your life.

HO HO HO.

On the occasion of His Highness' Birthday

2011-08-24T08:00:00.003-05:00

Somehow, The Boy is about to be seven years old.

It's been quite a month so far. The little guy has had his first real birthday party. My friend Miss Tara was so gracious to allow us to invade her home and her backyard and invite some friends. I wanted to invite our entire playgroup but when I counted everybody up and realized that would be 60+ kids I realized I would have to scale back so we just invited a few. I wanted to have everyone we knew come to play, and someday I will figure out a way to do that.

At Miss Tara's, we had a waterslide, and a lot of beach balls:

And of course, the FRIENDS:

And there was cake:

And by the looks of it, that cake was pretty good:

Yep, that was some pretty good cake:

And there were presents:

My friend Miss Danielle can take some beautiful pictures, that's for sure.

It was a great day.

By the time you read this, my little boy will be seven years old. SEVEN!

It wasn't so long ago he was small. He's not small anymore, but he will always be my baby.

"Small Victories"

2011-08-10T23:30:00.000-05:00

I wanted to share with you the writings of a friend -- this initially appeared in Exceptional Parent, and it is indeed written by an exceptional parent; my friend, Jen B. This is her story about her son Lucas and his diagnosis of Williams syndrome. Jen graciously permitted me to post her beautiful work here.

Small Victories

by Jen Breeding

I am haunted by a photograph. It is a picture of me in the nursery, eight months pregnant, arms cradling my belly, proudly smiling beside the crib we had put together that day. Sixteen months later, on October 2, 2006, at 5:05 p.m., I was feeding Lucas when his pediatrician called to confirm the test results. Lucas has Williams syndrome, a rare genetic disorder resulting in developmental delay and health issues. We finally had an answer.

I hyperventilated and breathed into a paper bag. I collapsed on the laundry room floor. After Lucas was asleep, I crawled into bed with him, hurting for him, hurting for us all. I was lost in a tsunami of grief.

I wish I could go back to that moment in the photograph and gather myself in a tight hold, that ghost of myself. I would whisper warnings and let her know that she needed to hold on while her life would soon whirl around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and, in a way, more alive.

I began my introduction into the world of Williams syndrome and a life of grieving without knowing what was happening to me. Why would I grieve my own son? We hide our grief. It's ugly, too sad, too depressing. We don’t know what it is, what it means, and we're uncomfortable with it. But somehow we intuitively know the rules and quietly slip behind locked bedroom doors.

As Joan Didion says in her book Magical Thinking, "Grief is different. Grief has no distance. Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life. Virtually everyone who has experienced grief mentions this phenomenon of ‘waves.’"

The waves knocked me to my knees. Not only did I grieve the person my son was “supposed“to be, I grieved for my old self. I became fascinated with pregnant women and wanted to talk about my own pregnancy and labor repetitively. Maybe I thought that if I kept telling my story, somehow I could change the ending. If I could just go back, maybe I could magically give Lucas the genes he needed in the 7q11.23 region of chromosome #7.

The first year after the diagnosis, I pushed my friends away. No one knew what to say. And all I wanted to hear was that someone could fix my son. I dove into reading every article and book about Williams syndrome, became obsessed with making him better. I didn’t realize then that he didn’t need fixing. Instead, I was the one in need of alteration, a mending of my soul.

I finally set the books aside and accepted that I could not change him, nor did I want to. I realized the label doesn’t matter, and I could not constantly worry about what Lucas’s future may hold. My world began to widen, and I crept out into the daylight.

I learned that I could advocate for my son. I didn’t have to sit in an IEP meeting and nod my head in agreement with everything “they” said. I could sit at the head of the table and speak in a confident voice. I had a voice. I had rights. I learned about the Individuals with Disabilities Act (IDEA) and participated in the Vanderbilt Volunteer Advocacy Project. I began advocating, ensuring my son, and other children with disabilities, secure appropriate educational services. I found a purpose and strength. Something that seemed to have died ignited inside me.

After my advocacy training, I came on too strong. I was a bulldog to my son’s school administration. I quoted law. I sent long, rambling emails and called numerous meetings. My focus became to beat up the administrators, rather than fight for what IDEA defines as a free and appropriate education. A child is not entitled to what’s best; only what is appropriate. I lost sight of this in my grand vision that every child with a disability deserves what’s best. They do. But that’s not in the regulations.

I began finding balance in advocating for my son and others. The peace I feel now equates balance, not weakness. It is strength rather than being a bully. It is knowledge, rather than raw emotion.

One of my coping mechanisms is to live in the present. This has saved me, restored me, and given me the gift so many are in search of – being happy in the moment. Carpe diem. This day-by-day living has been my lifeline but leaves me vulnerable. Lucas has now failed three audiograms in his left ear and is scheduled for a sedated Auditory Brainstem Response (ABR) hearing test. Hearing loss is characteristic of Williams syndrome but usually not until their thirties. I continually sneak up behind Lucas and whisper random things like, “Say dog,” to see if he can hear me.

Thoughts of hearing aids, progressive hearing loss, and the complications associated with hearing loss overwhelm me. I’m not prepared for this, I keep thinking. Once again, here I am, crying about my baby. But maybe this vulnerability is not all bad. To be vulnerable is to be human; to be vulnerable is to love somebody. We may have another challenge ahead.

Fortunately, Lucas takes on challenges with his almost constant smile. The progress he has made over the past three years has been a joy and an honor to watch. He’s walking, feeding himself, following directions, potty trained, and communicating with his iPad. Yes, I choose vulnerability.

Lucas has a moppy pile of blonde curls and loves butterflies and hot air balloons . He doesn’t fit neatly into a box. Not even the Williams syndrome box. Most people with Williams syndrome have proficient verbal abilities. Lucas doesn’t. His articulation is poor, and his communication is limited. I don’t know what hurts, when he’s hurting. I continually wonder about the differences he sees in the world.

I can now say I like who I‘ve become. But that doesn’t take away wanting to know why Lucas loves butterflies. What does he see? Is it beautiful? Calming? Do the wings slow to a soothing flap, a dazzling array of colors before his eyes? I will continue to grow. I will continue to grieve. And one day I will hear Lucas tell me all about the beauty he sees in his flying fascinations.

Grief has changed me, molded me into someone I wouldn't have recognized five years ago. It has made me face my fears and run from them at the same time. My spirit has been broken; my life has been unhinged. But again and again, it is rebuilt, restored and oftentimes, it sparkles.

I wrote the word "Breathe" on that paper bag I breathed into night we received Lucas’s diagnosis. I plan to destroy it someday. I'm not ready yet. I still need it for something. Proof that October 2, 2006 really happened? Something tangible, something less ambiguous and painful than those clinical cold words like syndrome, global delays, percentiles, and cardiology? Maybe I keep it around simply as a reminder to come up from the depths and breathe. Breathe, ride the waves, and hold on to these moments in this crazy, vulnerable life of mine.

the sweetest little boy

About the author: Jen B lives with her husand, two sons and a daughter. She lives currently lives in the Nashville, TN area but will soon be moving to Birmingham, AL. She volunteers as an advocate for families of children with special needs.

The Deep End

2011-08-01T18:15:00.000-05:00

Today my husband, The Boy and I were visiting friends at their community pool.

The Boy is a great swimmer and barely needs keeping an eye on but the husband or I am usually within ten feet of the kid while in the water for safety's sake. This morning I was doing what I am usually doing (talking to my friend) and my husband was doing what he is usually doing (swimming) and somehow The Boy didn't have a parental-set of eyes on him whatsoever for about ten seconds and took that opportunity to paddle into the shallow-end arms of a lovely but stranger-to-us woman and put his arms around her neck. I'm not sure how long he was there but when I turned around and saw them my son was quite happy to be bobbing up and down with her and the woman looked quite confused and unsure what to do exactly about the large almost-seven-year-old boy that had attached himself to her torso as he was happily sing-songing to himself.

It took me about .06 seconds to holler, "Oi! What the... okay, get OFF." I swam over to them in about three strokes and said, "I am SO sorry..."and started to peel his grip away, and trying to make jokes said, "Listen, you could at least ask a lady her name before you hop on her in the swimming pool!" and the neighborhood-Mom said, "Oh no problem, he's fine," and he clearly was NOT fine, he had embarrassed me immensely, and I was looking around for my husband so he could take over and of course he had dived under-water as far as he could while I tried to make amends for my son. The Mom offered up her name by way of introduction and said, "Hi, I'm Rhonda," to which my son replied, "Hello, Window" which seemed good enough for him and then he swam away. I tried to explain to our new friend Rhonda that we are still working on boundaries and that he always went right for the pretty girls and to please excuse him. She was more than nice about it but this kind of thing is becoming a regular occurrence and oh my god I don't know what I am going to do with that boy and I am not kidding.

Fa la la, says The Boy

This end of the spectrum.

2011-07-31T00:24:00.000-05:00

Hey -- You may not know this but The Boy has autism -- and not just a little bit. He has captial-A---full-blown---no, this isn't Aspergers' but Oh-Wow-He's-Odd autism. Part and parcel with his diagnosis comes a whole lot of language disorder, speech delay, self-stimulatory behavior, motor planning issues, and a host of other Strange Ways and Idiosyncrasies.

Know what else The Boy has? The best smile on the planet. He is goofy and funny and a ray of sunshine like you've never seen. He also has a stubborn streak and can be incredibly manipulative and a royal pain. Still, he is a sparkly and almost-seven-year-old joy for his Dad and me.

I'm going to talk more about my little guy's autism over the next while. Trying to figure some things out, like what we should be doing now and what we should be doing next. We're intimidated by the land mines of decisions that need to be made all around us and we want to do right by The Boy, and make sure he is happy and safe above all other things. I haven't written much lately because I've felt just frozen in space, finding myself holding my breath as I think through our options and I kept worrying if I wrote something down then that would be like carving the future in stone and I am not ready to do that quite yet, but I'm trying to get there.

Revisit: Don't ask me that question. Don't ask anybody that.

2011-07-14T22:52:00.000-05:00

Recently Stimey wrote a piece for her Autism Unexpected column entitled,

What to say to parents of children with autism. I thought she was very sweet and grown up and patient in her explanations. Stimey is much more polite than I am. Back in January I was pretty pissed about what people kept saying to me about my child with autism. I've got a few more thoughts on this tomorrow, but until then --

+++++++++++++++++++++++++++

Eventually, the subject comes up and you hear yourself saying, "My son has autism" -- quite often the response we get is raised eyebrows and a casual, "Oh, how high functioning is he?"

Before we get to possible answers to that question, let's take a look at the subject and question itself.

"High Functioning." High functioning what? What does high functioning mean? There is no clear diagnosis, there is no official definition written down anywhere that I can see. High functioning compared to whom? Relative to what?

Asking or not asking this question has nothing to do with being politically incorrect, whatever that means. It's just a stupid question. It's a rude question. It's something people say, usually thoughtlessly, with no regard for the feelings of the person they are asking, or whom they are asking the question about. They are trying to figure out what box to put your child into. Say it out loud to yourself -- picture saying it to a friend or a stranger, doesn't matter, picture saying it to somebody's face. You are asking if their child can... what? Talk? Chew? Walk? Do math equations? What? What are you asking them? Why are you asking them? What information are you looking for?

If you've posed this question before you are probably just parroting a phrase you heard somewhere, from somebody else who didn't think about what it meant, or what it would mean to ask about somebody's child. I've heard therapists say it (who should know better), I've heard doctors say it (who have no idea what they're talking about), friends and family and strangers say it without knowing what they're saying.

There are different responses, different points of view, different mothers and fathers, different children. I cannot speak for them, so like always in this space I will speak for myself.

I used to answer this way, "Oh he's doing great, academically he's right where we'd like him to be, but he's way behind in other areas. Making progress though!" And often the person is confused, because we didn't say, "Oh he's high functioning!" or "He's really low functioning!"

If I had to guess, I think most view "high functioning" (I refuse to use an acronym for a made up thing) as people on the autism spectrum who may almost be able to "pass as typical" -- probably picturing people with Asperger's (remember, I'm just guessing, I really have no idea what goes through everybody's head... and I know, I know, the DSM-V will have eliminated the diagnosis of Asperger Syndrome, but that's not until 2013 I think. Let's say then that they picture someone quite mildly affected by Autism Spectrum Disorder.)

So, it seems to me if you are asking "How high functioning is he?" you are asking if somebody's child can "pass"; can other people tell he/she has autism, do they look orsound or act "like they have autism". That's what I believe you are asking about these children. What are their skills, what are their deficits, and really, just how weird are they? That's what I believe you are saying.

I have a fantasy answer to this question, thought I'd try it out on you here, okay? Okay. Here goes:

Q: "Oh your son has autism! How high functioning is he?"

A: "Well, we don't really know for sure really, but we do know he has very nice manners. He would never ask you that question about your children, for instance. He would never ask you to defend how smart they are, how socially acceptable they are, you know, how well they "get along in public". My son would probably give you a big smile and say Hi! and then go wander off and play like most six year olds. He's a great kid."

Look -- you can ignore all that rambling up there and just remember this: Please don't ask me that question. Don't ask anybody that question, because just think about it for a second -- what if the child you are asking about will never pass for typical, has trouble coping in the world, has reached the age of 10 and doesn't know their letters and can't count past five and they might never be able to do so -- but they are so loved and so cherished by their families... Loved by parents who would never, ever use words that represent their child as less, would never, ever say their child is "low functioning". I hope if those mothers and fathers are asked this horribly insensitive question they look the person in the eye and say their child is doing just beautifully.

Please don't ask anybody that question, ever. Maybe try, "How's he doing? I bet he's a great kid."

Bumps in the Road.

2011-07-12T23:05:00.000-05:00

There have been a few bumps around here.

1. The Boy had his first bee sting. Stepped on it while he was happily running through the clover. I felt really bad because I had been cautioned a moment before by Coach Beth that there might be bees on that patch of green but The Boy was so happy, there was a fence, he could run with abandon and wow, he ran like the wind. Until he was running back the second time, and I saw him kind of stumble and hop and skip and then heard "OW OW OW OW OW OW" and then a holler and he hobbled over to me. I looked at the bottom of his foot, saw where the stinger had stung and then led him back to the pool to dip his foot in cool water. What a trooper. Not another peep about it. (I had stepped on a bee when I was years older than he and I SCREAMED and CRIED and my Aunt Linda took care of me and she was a Nurse like my mom so I felt lucky she was there; I could have been killed by that bee.)

2. The day after The Boy's bee sting, there were the hives. And the swelling. The site of the bee sting had no redness, no nothing. The hives were mostly on his torso but the swelling -- on The Boy's face (the bridge of his nose really got puffy) and swelling on his feet and on his hands and his knees and his forearms and wow. Just a lot of swelling. We'd seen this before, it's how my son sometimes reacts to a virus, and after the first few times when we went to the hospital now we know to give him Benadryl for a day or so until it goes away.

3. Swelling and hives were barely kept in check until later that night and then we were off to the ER for a three hour layover and steroids. Didn't quite fix it, so back to the doctor today for more steroids. And $100 in co-pays.

In the ER, swollen and hivey.
Look at that bottom lip, my poor baby.

The Boy all healthy, May 2011

4. Have you ever given your child with Autism steroids? Have you recovered? Not your kid, but you?? Steroid reaction is far better than the swelling and the hives surely, but man oh man. My kid is kinda scary on the first day or two of steroids. Aggressive and famished -- all day long. My husband says The Boy turns into The Hulk. Apt. That is an apt description.

Not quite this bad.

5. Due to this state of affairs, The Boy will miss the second and last week of day camp he was going to get this year, and that makes me sad for a couple of reasons.... For one thing, he loves camp. He went last year and it is much the same this year. And his father and I love when he goes to camp, it is the closest thing to a break and/or vacation we get all year, and since there is no more camp for The Boy then there is no more vacation for Us, we'll have to be satisfied with one week of mornings on our own. This is very unfortuate.

Camp -- last year. No pics from this year.
I was busy relaxing during the first week of Camp 2011,
now sadly there will be no 2nd week of Camp.

6. And a whole bunch of other stuff happened but this is all I will bore you with right now. Needless to say we aren't getting much homeschooling done around here, not quite sure what Ms. One Hundred is gonna say about that.

Revisit: The Happy Birthday America!!!! Party

2011-07-01T16:31:00.000-05:00

Recycling for the Holiday, this was the big whoopdeedoo I did last year. Happy 4th, everybody....

*************************************

Oh dear. I took an awful lot of pictures at this party. But I couldn't help it. We had a lot of ground to cover! Sorry about the quality, though. Had to use the Blackberry, my camera had quit.

The Cutest Girls in Town were once again in attendance, along with their wonderful mom, Ms. L and our little guy's helper Ms. A was also here. I think six is always the perfect number for a party, don't you?

Here we go --

The Boy couldn't wait. He knew "friends are coming!" and had been saying it all day, he was so excited!

The table was all set. I'd been shopping the great sales for things at the dollar stores and Michael's for a week.

This chicken-scratch list I made down there is the Order of Fun Things we were going to do.

First up: Making a "Fireworks T-Shirt". Boy was I ever mad when I discovered my camera had quit. No pictures of the talented little artists and their fabric markers (Michael's, $8.99) and their pre-printed cotton t-shirts (also Michael's, $2.50 ea.). I wondered about the logic of encouraging children to write on their clothes with permanent ink but what the heck, they had a lot of fun making their scribbles and doodles.

Here is one of the Picassos now, modelling his creation. I had to bribe him with chocolate to sit there.

Speaking of chocolate, here are the "Pretzel Sparklers" we made with melted chocolate chips and pretzel rods. Someone (me) overheated the chocolate and did you know if you overheat chocolate but catch it before it burns it turns the consistency of fudge? So that's what I told the kids we were dipping our pretzels in. We actually had to smush the chocolate onto the pretzels so it would stick but then we put sprinkles on them and they were delicious.

Biggest girl is all smiles as I tell her she can absolutely have another one.

Littlest girl loves chocolate AND sprinkles AND pretzels she told me.

The Boy probably couldn't believe we were finally going to eat these, he saw me buy the ingredients days ago.

Next on our agenda was "Confetti Balloon Burst!". Oh I was proud of this one. Didn't invent the idea but I think I pulled it off. I bought one pack of red, white and blue balloons ($1) and two packages of red, white and blue confetti stars ($1 each). I also bought some festive wooden skewers (stars and stripes pinwheels on the ends!) for just a couple of dollars, perfect for poking the balloons. If I'd been smart I would have remembered to buy a funnel, too, so I could transfer the confetti into the balloons easily before blowing them up. But I am not very bright and did NOT remember to buy a funnel and I had to make do by handling the wrong end of a turkey-baster in an unseemly matter and then using my mouth to... oh nevermind, it's too embarassing. I stayed up until 2am the night before getting this whopping bunch of confetti balloons together and I am glad I did because they were a hit with the kids!

Next on our list of Fun Things To Do was "Let's have a parade" exclamation point! We had to be dressed appropriately so in addition to the kids' newly decorated Independence Day shirts, they could wear a paper pom-pom wrist corsage that I'd made the night before (enough for all of us, even for The Boy, but he declined). Instructions for the pom-poms are here but you can mess around with the size a bit to figure out what works for you -- I wanted bigger than a napkin ring holder but smaller than the kids' heads, LOL. I used a longer pipecleaner so we could wind the pom-poms on our wrists.

It was hotter than Hades outside but we gamely marched out, complete with little flags, helim balloons (thank you Dollar Tree store, $1 each) and noisemakers -- I'd found 10 of them for a dollar and holy smokes were they loud...whistles, and sneedles and bloozles oh my they were loud loud loud LOUD.

"WAIT!" I said. "I have to get your picture!" And they did in fact wait, for an entire 4 seconds before they decided it was time to move.

We walked down the street to Whole Foods where we were treated to samples of (how American is this?) apple pie. The Boy of course, stole a strawberry from the stand across the aisle and licked it before I caught him.

I think we all had a really fun time with the parade, and the kids were great. Know who wasn't great? The adults we came across in the street and in the store. The kids were loud outside, no doubt about it, whistling and hooting, but we were outside and having a parade, I think noise was absolutely appropriate, even if our parade was two days early. We were just getting into the spirit of things, you know? And the kids were so wonderful in the store, I'd told them we couldn't make noises again until we went outside and not one of them blew into their bloozles or whathaveyou, not once, but we were boisterous and happy in there -- it's a big deal, this holiday. "Happy Birthday America!!!!" shouted out the Biggest Girl. "Happy 4th!" she smiled. People were not enjoying us very much, and I thought that was a shame. The clerks in the store didn't seem to mind us, they liked us. But I'd have to say that many people we came across were not in a festive mood at all. At 4pm on a beautiful Friday afternoon, a holiday weekend with promises of pie, beer, and fireworks even! Oh well, their loss.

And none of those non-holiday people were lucky enough to come back to our house, where we all chomped down on lemonade and the rice krispie treats I'd made the night before, with the help of a silicone star mold (Target, $2.99) and some cooking spray -- if you make these REMEMBER THE COOKING SPRAY. Finally, I'd remembered something. Anyway, I'd even melted some chocolate (properly) and dripped a bit onto the krispies to make them a little more special.

There was actually one more item on the agenda and that was to make little USA flags out of a peel-and-stick foam kit I'd bought, but we were all done in. We'd been whooping it up for two hours and it was time for everybody to go. I sent the kits home with the girls, told them to make them this year or next.

*********

These parties are so much fun for my little guy, these afternoons have meant an awful lot. We had the Old MacDonald Party, the Alphabet Party, an Easter Cookie Party, the Very Hungry Caterpillar Party and the Butterfly Party, all in addition to this wonderful Happy Birthday America Party! I am sad that they might come to an end soon. The Cutest Little Girls in Town are growing up, and moving on, I think. They are turning into little young ladies, smart and beautiful. The Biggest Girl, who was in class with my the little guy a couple of years ago in jr. pre-k, is going to school in the fall, and we can't follow her there. We will miss these kids terribly. They have been wonderful Friends.

So to those amazing little girls, and to their mom and Ms. A., thank you so much for letting me throw these small parties, for helping me make these wonderful memories for my boy and for me.

Love 'Em or Lose 'Em

2011-06-30T13:18:00.000-05:00

(Okay, big rant coming. You gotta forgive me, but I gotta say it.)

Even though the fantastic A.skate Foundation, run by and for autism families, has more than 5,000 Facebook fans they couldn't get the 1000 one-click votes they needed to get to the next round in a recent fundraising contest for non-profits. Where was everyone?

Even though for the past year inflatables play center Monkey Joe's of Nashville has offered a free monthly Special Needs Kids night to families in the area the turn out has been so poor (and snacks & drinks sales almost non-existent I'm guessing) they can no longer offer that evening to our kids alone and now have to open the doors to typical (paying) families as well. Why didn't more people go?

Even though last fall one of our favorite play places, BounceU, agreed to let our playgroup host a special Autism Kids Night open to just our families in the community -- and even though I made flyers, posters, called everyone, emailed everyone, told everyone, posted everyone I had ever met that was even remotely connected to the autism community -- even then we had just 24 families show up, and every single one of them from our playgroup, not one other family came.

Peek-a-boo Playtown, a locally-owned indoor play center who also supported our families with a free monthly Special Needs Night in their two locations has just announced they will be closing. I know many of us were grateful for Peek-a-boo Playtown on those nights, but I know that the company couldn't survive if we didn't support them with our paying business, too. Might not have made the difference in keeping them open but we'll never know.

If we don't try harder to support the businesses, organizations and individuals that support our families and our community, they may not be able to hang on, or they may just pack up and go because the interest just doesn't seem to be there. Everyone I know who donates their time and energies to our families deserves our respect and appreciation. Think of what they give us.

A.skate's founder does have some meager, occasional financial support but she pays for most of their expenses out of her own savings, and she's not a Rockefeller, I don't expect she'll be able to do that forever.

Monkey Joe's is a business and if we don't help them keep their doors open as paying customers then we can't be surprised if they don't make a go of it in the future and we'll lose another great spot to take our kids, we've already lost Peek-a-boo...

And I don't think I will spend the money or put out the time and energy to try to get another Autism Kid's Night together for the public because I don't think anybody in the autism community in general gives a damn -- I'd rather put my energies into my playgroup, the only people that came out to support the event.

Please help! Buy something, pay something, donate something to the causes and businesses you love. If we don't support our friends today, they might not be there to support ours tomorrow.

Finally, a note to our local friends who are in Young Athletes:

Miss Stacey of MyGym in Brentwood -- a childrens' fitness and gymnastics coach that offers up her facilities, time and expertise for free once a month to those of us who send our kids to her Young Athletes Program (the stepping stone to Special Olympics) -- asked for a few dollars to help to with expenses of some Special Olympics athletes that she coaches and I am hopeful that all of my friends and others who benefit from Miss Stacey's generosity will consider putting money in the bucket. Even just a few dollars will help, and the funds will go to supporting something that our families may be part of for a long, long time. Let's support Miss Stacey and her efforts now.

Love 'em or lose 'em. You gotta support your friends. And anybody who supports kids and families with disabilities is a friend of mine.

AutismTown

2011-06-27T00:54:00.001-05:00

I've been thinking about what I will do with my millions when my Powerball numbers finally come up. I think I'm gonna build a little city; "AutismTown". We'll plan an entire community for our friends with children with autism.

An environmentally-responsible housing development, with reasonable prices and agreeable mortgage and rental rates. Low-rises, single family homes, duplexes, we'd have it all. Lots of green space. Lots of one-story living, because some of our kids don't give stairs the respect they deserve and also climbing out of a main-floor window isn't as risky as a second- or third-floor window. Yeah, lots of one-story places. Big yards, if you want 'em, all with fences and locking gates. Well-lit streets and bike lanes and crosswalks and sidewalks. Community pools with qualified lifeguards and tall fences. And playgrounds -- with no mulch, please.

A school with a 3-to-1 student to teacher ratio, with one-on-one support whenever the student requires it. Only the most kind and qualified teachers -- whom we will pay handsomely -- so we can draw from the entire country and recruit only the best. Teachers will always start with something nice to say about their students when Mom or Dad comes to pick them up after school. Classroom experiences will be tailored to the needs and interests of the student as they grow older, helping them to make their way to post-secondary education if that is their path, and to assist them in finding their vocational purpose in life. Typical siblings will be more than welcome in our school, we will not discriminate. We'll also have cameras in every classroom, live video feed accessible only by staff and parents via an ever-changing password-based internet website. As they grow older students will be able to participate in sporting events with and without potentially humiliating outcomes, our own marching bands, parent-chaperoned dances and all the other tortures of typical adolescence. Children with autism are entitled to love/hate their teen years as much as anyone else.

The local hospital will have well-informed staff; autism will be something they are very familiar with and the mental, emotional and physical health issues that our families deal with will be commonplace and never cause for undo embarrassment or lengthy explanation. Medical personnel will know how to administer medicine to our children, will know how to draw blood from our children, and will understand that No, We Cannot Wait Three Hours For A Double-Booked Appointment.

Police officers will be our friends, and will be respectful of all AutismTown citizens, especially those among us who may or may not answer to "Hey you, stop!" or "What's your name?" Lots of compassion training. Lots.

Our little town will have everything you need to make living comfortable and fun. A movie theater in the Town Square with first-run movies on two screens -- one a sensory-friendly one (volume down, lights up). Grocery stores with fine organic products and hard-to-find gluten and casein free items for those with sensitive diets. Dry cleaners, banks, bookstores, bars and restaurants, churches and synagogues, Anthropologie, florists, hardware stores, gas stations, donut shops, liquor stores -- and anything else you could want.

Best of all, these shops and services will employ people on the autism spectrum that live in our town. Of course, there will be jobs for typical people too, but one of the most wonderful reasons for us to build a town is to see our children grow up and lead productive and happy lives, so we want to make sure we give them the best education and encouragement and should they decide to stay in our town they will have somewhere to work where they will be accepted and understood. They may decide to go off into the world to have families of their own and that's okay, too. (I am sure they won't mind if we visit a couple of times a year?) But if they ever want to come home we will be happy to have them come back, and we'll do our best to make sure there are jobs and homes for them to come back to as adults, where they can be as independent as their skill set allows. If they need support, maybe a group home living environment or more individualized care we'll have that for them, too. Or we'll leave them be, to live independently on their own if they wish. We promise to always call first before dropping in.

And we'll welcome new autism families every year, and our town will grow. We will be surrounded by other people who may or may not become our friends but who will share an understanding and common goal for our families to be safe and happy.

Just don't leave them on the floor.

2011-06-22T00:34:00.000-05:00

We're working on some age-appropriate play skills for the little guy at our house, and I have to confess, I am learning to love LEGOs. Here is far too much information about them.

I know for many people LEGOs are not a new thing, especially in Autism families, but The Boy has never cared for them so we didn't have any until now. Ms. One Hundred suggested we start small, so I went to Target and bought this for less than $8.00:

There are youtube videos for everything. I mean EVERYTHING.

There are a handful of small "minis" in this LEGO Creator line available to buy -- the helicopter is actually 3-in-1 and has 52 pieces, and first we put the thing together then we started to take pieces off and asked The Boy to put them back on to complete the piece. We started with the last three pieces, then five, and so on until hopefully he can pick out his own at the store and then come home and open the box and put it all together himself. He's not a fan yet, but he is tolerating it all quite well. (Everything we willingly give him around here is immediately treated as suspect. Maybe I should put one of these high on a shelf that would be dangerous to retrieve.... that might actually pique his interest.)

We also got this one -- LEGO Tiny Turbo Urban Enforcer, which is like a chunkier little HotWheels car (this was the one I got to put together and it was fun, for all you non-LEGO people):

And of course there's a whole bleeping line of these Tiny Turbo Racers, too:

The next item is also quite small and only has 35 pieces (I got it at Target, again around eight bucks) --

-- but we started the same way, with the last three remaining pieces unattached, and put the pieces and the car down on the table in front of The Boy and asked him to put it together. We only had to show him once or twice and he has gotten the hang of it so we continue to give it to him less and less intact, and again, not sure he'll be begging for Legos for Christmas or anything but he's putting up with them.

And of course somebody made a video about this LEGO version of Lightning McQueen, and it's pretty darn flashy.

And here is something really cool. Please note I have never seen Cars The Movie, and I doubt I will see Cars 2. However, I really enjoyed this trailer for the upcoming film, recreated entirely in LEGOs. Seriously.

LEGOs, go figure. I am hoping these things catch on around here. Finally, something I like to do for a change.

Maybe it's not Schmolland...

2011-06-14T13:42:00.001-05:00

Seen today on Facebook from: Laughing Through Tears: Two women, four autism diagnoses, many cocktails.

So last week I was in Amsterdam. There was a lot of public uriniation and inappropriate touching on the streets, so maybe autism IS like Holland after all.

********

I laughed a little maniacally when I read that. Still laughing!
Don't know what they're talking about? Go here. And then go here.
And if you would like some more fun from the girls at Laughing Through Tears, please check out their blog here.

I will be back later. Between laughing fits today I am busy screaming to anybody who will listen about a baffling new study that just came out. I'll be back later to curse in this very space.

Horse Roundup.

2011-06-09T20:32:00.001-05:00

We've packed it in for the summer at Saddle Up. It is too bleeping hot for the little guy to ride a horse in June and July, so we take a bit of a break.

Hard to believe how far he's come.... The Boy has grown up so much in the past couple of years, and he rides a Big Horse, now.

Such a big boy.

My little guy at his first lesson, back in August 2009.

He's growing up so fast. And he's learning to ride a horse, imagine that.

Thanks for everything, Saddle Up! See you all back in the barn in the Fall.

Just rolling along.

2011-06-08T23:48:00.000-05:00

We are a very cool homeschooling family, you know. We do all sorts of stuff -- like this --

Last week we were invited to a birthday party at a local roller skating rink. We'd had so much fun trying skateboarding a couple weeks ago we figured this would also be a hit. Um, no. My poor kid. His Dad had hold of him under one armpit, I had hold of him under the other, and thankfully me and the husband had on street shoes because it took all we had to keep The Boy off the ground. You ever see Bambi's first moment on ice? That was my little guy on roller skates.

No wonder he was dizzy. Look at that carpet.

That sign just kills me.

See? Not so bad.

He'd look from me to his Dad and say, "All done -- all done skating?" Pleading. We dragged him around the rink a few times just to make sure he didn't like it, and then we all sat down and had some M&Ms until it was time for the birthday girl's wonderful homemade, gluten-free, pineapple-upside-down birthday cake, which The Boy loved. No pictures of that, he plowed right through it before I could get my camera out of my bag.

Call me crazy, but I am still hopeful about ice hockey. I'll keep you posted.

"It should never have happened."

2011-06-06T10:03:00.001-05:00

From the New York Times:

A Failure to Protect

By DANNY HAKIM

Published: June 5, 2011

Jonathan Carey did not die for lack of money.

New York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents of the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

“I could be a good king or a bad king,” he told the dying boy beneath him, according to court documents.

Story continued here and accompanying video here.

What if we didn't do enough?

2011-06-05T10:24:00.001-05:00

Just finished reading what K Floortime Lite Mama had to say today at HopefulParents.org, and I know exactly how she feels.

Take a second and find her post here.

2011-06-03T10:18:00.000-05:00

I've told you recently about our friends at A.skate Foundation and all the great work they do -- A.skate is in the running for a bunch of money being given away by Vivint. If you have a Facebook account, would you please take a moment and click the link below? Your vote would really help secure some badly-needed funding for this FANTASTIC organization that travels the country, giving kids with autism a chance to experience skateboarding. Want to see what A.skate is all about? Watch this.

The Boy and his new skate deck.

A.skate @ Sixth Avenue Skatepark

2011-05-29T23:37:00.003-05:00

Look where we went today!!

*I almost forgot -- there is actually a snip of video of The Boy in action*

This is where it happened:

The other day I told you about Crys Worley at Askate.org, and my family and some of my friends were able to take part in a local A.skate event this afternoon. It was phenomenal.

This is such a generous, thoughtful, and exciting thing to be able to witness and experience. The Boy has never been on a skateboard in his life, and he was a little apprehensive. Our volunteer helper, Mark, really took his time and was very gentle and took it all very slowly.

Here is some bum-skateboarding, a great way to start.

And some sliding-on-the-bum, had to give that a go, too.

And then there was some standing-up-skateboarding. This was getting exciting!

Then Dad came over to give an extra hand.

Okay, NOW we're talking --

Mark gave the little guy an extra special ride on the skateboard -- Mark picked him up and carried him while he skated across the floor. The Boy loved it.

It was fun to watch the other kids sometimes. Good chance for Dad to rest a second, too. The little guy was in no hurry to leave.

At the end of our skate session, it was time for the big (typical) boys to take their turns. I stood to the side and I watched them lean against the back wall and I thought they were the coolest looking kids around and I thought, we gotta come back here.

I think my little guy can do this someday, I really do. He had so much fun, I want to do everything possible to see that he can come and try skateboarding as often as we can. I love what the A.skate Foundation's website says: "Autism, like skateboarding, can be unpredictable and often times unruly.We embrace the parts of autism that are hard to understand and give these kids an outlet that is free of rules or judgment, and allows them to be social without being “social”."

Thank you so very much to Crys and Peter of A.skate and all their volunteers who travelled up with them from Birmingham -- especially Mark, who stuck with The Boy for the entire hour we were at the event. And also a very big thank you to everyone at Sixth Avenue Skatepark where our big day took place.

Askate even gave The Boy his first skateboard deck.

I really can't begin to tell you all how grateful our family and friends are to have this chance for our kids today. There were some teary-eyed moms there, I can tell you.

And some of us (me, if you see the blurry figure there) some of us actually jumped for joy a few times, too.

My, what big hearts you all have. Thank you. Thank you.

*****************

Want A.skate to come to bring skateboarding to kids with autism in your city?

From the A.skate website: "Please contact us today to see how you can have us come to your town for an autism skate clinic. We will need information to contact your local autism society to help promote the clinic and will also need volunteers to help organize the event. We provide the skate gear (skateboards, helmets, pads) as well as the snacks. We will come up with a fundraising goal to host an event in your town and then set a date, place, and time. This is a great way to gather the community and let the kids meet new friends!"

Please remember that everything A.skate does is at no cost to the families of the children with autism who participate. They hold fundraisers and rely on donations to make their efforts possible.

SO. MUCH. TO DO.

2011-05-24T11:12:00.000-05:00

I have a head cold, ugh. But other than that things are going good over here. Well, other than Ms. One Hundred is trying to kill me with the homeschool workload.

She swears she's not. But I have really begun to wonder, because after being shell-shocked for a week since the new updates to the little guy's homeschool program and thinking, oh it can't be that bad, I sat down and got my act together and did a whole bunch of prep and now I am ready.

These are all the materials for what Ms. One Hundred wants us to do today. And every day.

Hard to tell from this lousy picture, but these packages are huge -- they are 2 gallon bags! And full of work to do. Let's see... We have worksheets and exercises for Language, Math, Reading, Spelling, Social Studies, and Fine Motor Skills.

I know there is a lot we have to get done in order to help The Boy catch up to his same-age typical peers, and he's doing great. Lucky for us we've got Ms. One Hundred to remind us the boy can indeed do this work, and that he's doing a great job, she believes in him and knows how hard he works. And lucky for the little guy he's also got a pushover for a Mom and we don't work like this every single week day, more like 4 days a week. There's lots of time for fun things, and our weekends are PACKED with playgroup friends and visits to the park and and elevator rides and lunch at favorite restaurants, etc etc etc. (In fact, we've been having so much fun I am bloody exhausted but whatever.) The Boy's having a great time, he doesn't let homeschool work cramp his style too much.

And besides, we know hard work pays off, look how nicely his handwriting is coming along --

And just because I want to here's a picture of The Boy from about a month ago, and just look how cute he is. No wonder I let him get away with working his tail off just four days a week and not five.

Look Ma, no teeth!

Autism. Skateboarding. YES.

2011-05-19T19:42:00.001-05:00

Today, right now, to me -- there is no one cooler than Crys Worley.

Come look what she did.

Please support the A.skate Foundation.

The A.skate Foundation
2328 2nd Ave North
Birmingham, AL 35203
ph: 205-862-6822
alt: 910-471-7453
info@askate.org

He's got me under his S-P-E-L-L

2011-05-14T00:35:00.001-05:00

My little guy loves to spell. I am hoping he just keeps loving it; I plan to enter him in contests when he gets bigger and we will all be rich with spelling bee prize money. So we spell a lot around here.

When I am trying to get my sh*t together for homeschool, I need to keep The Boy occupied, and I try to find something for him to do at the table. Ms. One Hundred has been preaching the benefits of "independent work" and I'm down with that. The Boy's favorite kind of table work is spelling. So I set him up with a worksheet like this, and it keeps him busy for about sixty seconds.

That kid could spell colors all day and often does, quietly, over and over to himself. I guess it's really important to him that he doesn't forget how to spell "orange". Other than these ten he can also spell "gray" but I can only squeeze ten words on a page, plus I can't think of any more colors right now, so gray will have to wait for Write Colors 2.0.

We have spelling worksheets a couple of times a day. The fill-in ones are okay, but The Boy prefers a list of spelling words. I try to mine the Dolch List for words for him, and used to kind of think of themes (like "colors", of course) but I am too bloody busy/lazy to think of any more themes so I gave up and went to the alphabet. We are currently finishing up on the letter E; and we start a new letter on Mondays.

See?

For fun he writes "elevator" & "escalator" on the back. I don't count these; he was born knowing these.

Like I said, my little guy likes to spell all the time. When we're finished homeschooling for the day he wiggles his butt in his chair like a puppy asking me if he can "write the words" in his front-toothless way, meaning he wants to write "I AM ALL DONE" and then recite it at the top of his lungs and runs off giggling. He learned to spell that really quickly, isn't that interesting?

He spells with his Dad, too. He likes his Dad to push him on the swing for like, an hour (he's a very, very good Dad) and the whole time he shouts out requests like a guy hollering for "Freebird" at the end of the night -- "spell 'slide'!" Like it's a test, because The Boy knows how to spell it just fine, I think he just likes to hear his Dad spell it.

I know, I'm sorry, I used this photo a couple of months ago but it's the only one I have of him on a swing.

They run through all the hits apparently, spell slide, swing, dog, elephant, Ikea, bank, car, McDonalds, library, playground, cheese, and pretty much anything else that crosses The Boy's mind. And this is also a learning opportunity, his Dad starts realizing he doesn't want to take spelling orders from a six-year old the entire time so he starts spelling words of his own choosing, just to broaden the kid's horizons. I don't really know what the suggested spelling is for the most part but I know one of the words recently was "hotel" because The Boy learned it right before our mini-vacation last weekend, and when we got home he promptly went to the calendar on fridge and wrote H-O-T-E-L on the calendar for this weekend, so I guess not only did he learn a new spelling word but he must have also had a great time and wanted to put in his request to go away again very soon (I have asked my husband about the possibility about going away again this weekend, but unfortunately, no. He asked me if I could spell B-R-O-K-E).

And my favorite thing lately -- and I don't know if I've mentioned this here already but my favorite thing lately is that if I spell H-U-G to the little guy, he wants to give me one. My heart melts every time.

"Recognition"

2011-05-05T21:19:00.001-05:00

If you're green, you're golden.

Twenty-six states in this country have legislated insurance mandates to cover therapies for children with Autism. Progress has not been made in my home state of Tennessee's Autism Equity Act since 2006. Speech therapy, physical therapy and occupational therapy are now covered for most here, but not all children with autism, and the amount of therapy varies widely. Services under the care and direction of a psychiatrist (??) may also be covered. Coverage is for children through age 11. No other autism-specific therapies are included in this Act. Prior to the Autism Equity Act many children with autism in Tennessee were actually excluded from coverage for speech and occupational therapies under their parents insurance policies because they had autism. Crazy, right? If my child had an "accident" of some kind and had required those kinds of therapies he would have been eligible for services under my husband's insurance plan because the therapy would have been "rehabilitative". Prior to this Act, being born with a medical disorder that required a child to receive speech therapy ("habilitative") often meant he or she wasn't eligible to get any.

A house bill that would legally require insurance companies to cover our children for the most common therapies (Speech, Occupational, and Applied Behavioral Analysis, or ABA) introduced in February 2009 never went anywhere, and I am in the process of trying to determine where this issue stands now. Currently, my husband and I go out of pocket approximately $1,000 per month for the ABA therapy our commercial insurance policy is not required to cover, and it is crippling us and digging that debt hole a little deeper. The reason given is that insurance companies believe this therapy is "experimental", and while they don't deny it works, they say there haven't been enough studies, that there isn't enough data to support its efficacy, which is just nuts. (They should come to my house. I've got binders and binders filled with ABA data, proof that it has been almost solely responsible for gains The Boy has made these past few years.) I don't know of any insurance company in the state of Tennessee who covers this therapy, with the exception of the government -- if your child receives Social Security Disability and/or Medicaid, or if your family is covered by TriCare, which is the insurance policy coverage for military families, ABA therapies are covered. Funny how the State government believes they need to provide ABA therapy for children with autism, yet they do not require commercial insurers to do so.

I can't find much information on the current state of an insurance bill that would provide our children with autism with appropriate coverage and care in the state of Tennessee. But when I looked today, I found this, a draft of which was apparently signed by the House Speaker yesterday:

SENATE BILL 72
By Overbey
HOUSE BILL 389
By Montgomery
AN ACT to amend Tennessee Code Annotated, Title 4,
relative to establishing an Autism Awareness Recognition Day.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF TENNESSEE:
SECTION 1. Tennessee Code Annotated, Title 4, Chapter 1, Part 4, is amended by adding the following as a new section: 4-1-409.
The governor shall designate one (1) day of each calendar year as "Autism Awareness Recognition Day" in order to promote knowledge within the state's communities about the condition, the need for community services and appropriate medical treatment for the condition.
SECTION 2. This act shall take effect July 1, 2011, the public welfare requiring it.

Well, it looks like the state has agreed to recognize autism awareness. Bloody hell. Is our state government just now getting around to acknowledging that people with autism have a need for community services? And notice they don't mention people. They mention a "condition".

So it doesn't look like there are any plans to push the insurance companies to provide appropriate coverage for our families any time soon, at least not in our state. Kentucky and Arkansas and TEXAS for heaven's sake have these laws, yet Tennessee does not.

******

Know what Tennessee is discussing on the Senate floor this week? This piece of garbage.

Equality for ALL.
Equality for ALL.
Equality for ALL.
Equality for ALL.
Equality for ALL.

"You miss 100% of the shots you never take." - Wayne Gretzky

2011-05-03T10:03:00.001-05:00

How are you all? I have been thinking about something, and planning and scheming. I am trying to hatch a few plans at once and I may be becoming overwhelmed because I am considering going back to bed, which is not really an option at this moment. I am working on something very special for The Boy's education and will come back and chat with you about it soon, I hope. In the meantime, I can't focus on much else so let me show you something that Stimey has been talking about: Hockey.

(I know, right? Hockey. Hockey?)

Stimey's little boy Jack plays hockey on a team for kids with developmental disabilities. Isn't that the coolest? There are hockey clubs like his in the United States, Canada, and the U.K., and they just played an international tournament of sorts in Boston. I would like to start something like this in Nashville if I can find the right people to coach. Come on, I'm not the only Canadian down here, surely someone that knows something about hockey wants to coach these little guys? I will help with the fundraising, the organizing, and pretty much anything non-hockey oriented. Drop me a note if you want to get involved, won't you?

You can read about this great undertaking at Special Hockey International and American Special Hockey Association . But please start here, and throw a couple bucks in for a donation if you can.

Special thanks to Jean at Stimeyland for writing about her family and her little guy's hockey experiences.

School doesn't look like this around here.

2011-04-24T13:15:00.000-05:00

Have you been watching the PBS Newshour series Autism Now? Some people aren't crazy about it, and the production is definitely not neutral on a lot of issues, but there is some very good information here nonetheless.

In Part Four of this series, Newshour takes a look at two different school settings for children with autism in New York. "In New York City schools, there are more than 7,000 students with autism. Seven hundred of them, from preschool age to 21, attend this public school for autism in the Bronx, PS 176." PS 176 in the Bronx is the first school setting in this video, and it's pretty remarkable, nothing I've heard of looks like this where I live.

The second school setting profiled is at the New York Center for Autism Charter School, and here is their description from their website: "The New York Center for Autism Charter School serves students with autistic-spectrum disorders, including autism, who require a specialized educational environment. Students will receive intensive, individualized instruction in which each component of the school's curriculum will outline a specific set of behavioral teaching strategies to teach the specific objective." The program looks amazing to me, there are just 30 lottery spots (just! 30! spots!) but it's all individualized teaching, it's aba-based, it looks amazing, watch for yourself, see what you think.

And after you finish watching this program, keep in mind that these two schools represent just 1/10th of students with autism in New York City. I would guess that the other 90% of students with autism have parents who can only dream of such wonderful educations for their own kids, especially the charter school. Me too. Makes my heart hurt.

Anyway, if you've got 10 minutes to spare, take a look --

Looking for Mr. Sponsor.

2011-04-18T12:08:00.001-05:00

We have a playgroup, I've mentioned this, yes? We have about 40 families currently, and every now and again the subject of a group T-shirt comes up. I have a design I like, a company I can order from, and people who would like to have one.

This is the front:

Too squinty? Here is a closeup:

And here is the back -- without a sponsor's logo, sadly:

I can get the price of these T-shirts down to $16 for our members, if we can find a sponsor willing to help us out with $250. We will proudly wear our shirts out as a group to events and get togethers, just trying to find a way to pay for them. Our families have so many expenses over and above what insurance will cover for their kids, we're trying to find a way to make this affordable for them. I probably could have gotten a sponsorship from the nice people at BoomBoom's Bar & Grill Extravaganza, but thought that might not be the best one for us. Wouldn't you like to put your kid-appropriate logo on the back of our shirts?

It's a.... car?

2011-04-13T11:29:00.001-05:00

Look -- I can't draw. Really, really can't. But since we started homeschooling The Boy I have had to try my best to scribble some pictures to teach him various things. A few months ago we started to show him how to follow written directions on homemade worksheets -- we started with a whole bunch of confusing instructions but then settled on the first two: Circle and Trace. And here's the best artistry I could come up with (oh the humiliation).

Could you see that? Were you able to tell what those things were? My poor kid, how was he gonna learn anything if this was the best his mother could do? Oh and here's another one.

So embarrassing. And this is my entire artistic repertoire. I couldn't take it any more so a couple of weeks ago I went online and found some line drawings I knew The Boy could read the names of and made some new sheets.

UPDATE!

Thank you to my friend Leslie B.who pointed out what I so obviously missed, and that's to show you how we recycle (and recycle again) all the pictures we have so that we can utilize every possible combination for The Boy to answer:

We change the instruction (ie. Circle the "x" animal.)

And we mix together different classes of items (ie. here is an animal, food, and a vehicle):

This is really easy to do because everything is on computer, so I just switch stuff around and The Boy gets a varied and different 20 questions every day.

I hated that the little guy's learning was really being limited by my inability to draw a proper lion or anything else for that matter. The kid loves these worksheets, and it gives him a chance to read and show he understands the directions independently. I make them with 10 tasks to "circle" the correct answer and 10 tasks to "trace" something. I made three or four variations on these worksheets and unfortunately he whipped through them in no time. It took me HOURS to locate and steal -- aw jeez, I really did have to copy these -- all of these pictures from google and he devoured them in no time. I rotate them but I really need to get new pictures now. So get those pencils moving because WE ARE NOW OPEN FOR SUBMISSIONS! And submissions would be oh so appreciated! Because I just don't think my art skills are going to improve much.

"Every Day Counts"

2011-04-02T08:12:00.000-05:00

Rethink Autism has a really interesting video instruction program and they are making some of it available for free on their site for the month of April, which is Autism Awareness Month.

Called "Every Day Counts", there are three videos, What is Autism, What Are The Signs, and What Can I Do? -- which is a great set of short instructional videos on how to begin to teach your child with autism using basic ABA techniques that anybody can do at home.

As of 2011, Autism affects 1 in 110 newborn children. Do you know a child with autism?

Thank you to the Autism Support Network for sharing this link today.

*The Rethink Autism site and their free programs are very popular this month as you can imagine. Please keep trying to view these important videos.

Schmolland is my home.

2011-04-01T00:01:00.010-05:00

I did not write the following piece, but there is nothing more important for me to pass on to everyone this first day of Autism Awareness Month than this article, written once upon a time by Laura Krueger Crawford. I've posted it before and I will post it again and again as it has a special place in my heart, because my family are Citizens of Schmolland.

Holland Schmolland
By Laura Krueger Crawford

If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives. You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato. However, when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans. You rant and rave to the travel agency, but it does no good. You are stuck. After a while, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think, “This isn’t exactly what I planned, but it’s not so bad. It’s just different.” Having a child with autism is supposed to be like this -- not any worse than having a typical child -- just different.

When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day. While I appreciated the intention of the story, I couldn’t help but think, “Are they kidding? We are not in some peaceful countryside dotted with windmills. We are in a country under siege -- dodging bombs, trying to board overloaded helicopters, bribing officials -- all the while thinking, “What happened to our beautiful life?”

That was 5 years ago. My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we’ve created… well… our own country, with its own unique traditions and customs.

It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a “pointy chin.” A “pointy chin” is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person’s shoulder. For the person giving the “pointy chin” this feels really good, for the receiver not so much – but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature presentation” says it all. In Schmolland, there’s not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful. It’s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman’s upper torso and says, “Do we touch boodoo?” We simply say, “No we don’t touch boodoo” and go on about our business. It’s a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. “Oh your child is a runner? Mine won’t go to the bathroom without asking permission.” “My child eats paper. Yesterday he ate a whole video box.” “My daughter only eats 4 foods, all of them white.” “My son wants to blow on everyone.” “My son can’t stand to hear the word no. We can’t use any negatives at all in our house.” “We finally had to lock up the VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250. [edit: in 2011 the number is now recognized to be 1 in 110.]

Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults -- toxins, chemicals, anti-biotics, vaccines -- to create immunological chaos in the nervous systems of developing children. One medical journalist speculated that these children are like the proverbial “canary in the coal mine” here to alert us to the growing dangers in our environment. While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what “could be” to “what is.” I look around at this country my family has created, with all its unique customs, and it feels like home. For us, any time spent “nation-building” is time well spent.

Written by Laura Krueger Crawford

FANTASTIC.

2011-03-31T12:26:00.000-05:00

This girl has autism and tells you a little about what it's like for her.

Thank you to Landon Bryce at thAutcast.com for the link.

If I had $100,000....

2011-03-28T21:52:00.000-05:00

Today I got an interesting text message.

My friend wrote, "So, how much to start that autism school?"

Okay, I've got a few minutes free, I can play this game.

(Now, I don't plan on starting an autism school, but I sure have some ideas on what I would like for The Boy in the way of "educational support." So I laid it out for my friend in bits and pieces.)

"Well," I told her, "The Boy will be taking part in a Group Academics Program this summer for kids with autism in grades K-2. It will be two days per week for half a day. Imagine if we could extend that, maybe to three or four days a week, and do it all year round?"

"Okay, how much?" she said.

"There aren't that many homeschool families like us around that I know of," I continued, "so this program just goes in the summer with kids who attend traditional school. But it will be fantastic. There are going to be eight kids, Ms. One Hundred is the lead teacher, and there will be another ABA therapist, and an intern. They will be working on individualized academic goals for each student. These kids are going to be taught by fantastically skilled teachers, and get a far better education -- better focussed, more appropriate and individualized -- than they get all year in school!"

"And how much will that cost?" my friend asked again.

"If we could do this all year round -- not as a school, but as a homeschool resource, because this is just part time -- then our kids would most assuredly get a better education than their peers. It would be fanastic!"

"Will you ever tell me how much THIS COSTS?" my poor friend, at this point, just wants an answer.

"Okay," I told her. "Let's do some math. The cost of the summer program -- which runs about eight weeks -- is $1,000. So let's say that if we double in-class hours to 12 hours per week we will double the cost of the program, and we're up to $1,000 for four weeks, per student. So conservatively, let's take off four weeks per year, at $250 per week, that's $12,000 per student. But....."

"But what?" she asked.

"But I would want to have the majority of the tuition paid for all eight students."

My friend didn't answer me right away. I thought I'd lost her.

"Here's why," I said. "Our families are strapped. We pay for so much therapy and some have other medical costs that are just crippling to their budgets. Their kids go to traditional public school now and they don't have to go out of pocket for that. Hard to convince them to, you know... maybe stop paying their mortgage so they can find another $1K per month to cover half-time tuition costs, and oh-by-the-way you have to homeschool your child, too. They would have a hard time seeing past the additional financial burden of the educational program's tuition, when they could just keep their kids in traditional public school for no extra cost. So I would like to have the funding to pay the majority of tuition for all eight students."

She was back. "What do you mean by 'majority of tuition'?"

"I figure, you've got to keep the families invested in the process. Sometimes people get things for free and they don't value it as much, they need to be part of the investment of the program, in addition to homeschooling their child and working on their academic assignments with them, it's part of keeping up their end of the bargain, their part of the agreement to see that their kids succeed. So maybe have families scrape together $250 per child, per month. And then we fund the rest.... Hey, are we just talking here? Or might you have an idea about the funding part?" I asked.

"I might have an idea," she said. "So how much do we need in total, then?"

"You have a pen? Write this down:

Cost of Program
12 hours per week = $250 per student, per week
48 weeks per year = $12,000 per student
8 students per year = $96,000 total tuition costs for all students

Funding
Tuition per year paid for by families ($250/4 weeks) = $3,000 per student
8 students per year @ $3,000 each = $24,000 total paid annually by families
Donation required to cover costs = $72,000 per year

"Still with me? That means each family has tuition costs of $3,000 per year, funding pays for the rest. So my thinking is, if we had $100,000, we could cover the $72K we would need for the first year (with parents chipping in $250 a month, of course) and we would have some seed money ($28,000 to be exact) to put towards the next year. With money in the bank we would be able to attract a great Board to head a Foundation, and we could continue to raise money any way we can to try to keep the thing going."

"One hundred thousand dollars," my friend said. "Wow."

"Not sure if that's what you were asking initially, by I thought I would shoot for the moon," I told her. "And you know something? The only thing that even looks like a private school for kids with autism around here costs $30,000 a year per student, and even if I was COVERED in money they don't take kids like mine, they don't take kids that have stims and behaviors and expressive language delays." I laughed. "Ms. One Hundred isn't bothered by that stuff. That kind of thing is just another day on the job for her."

"Who would the eight students be?"

"I think that would be up to the Program, it would be a scholarship, they would know who would be a good fit, and which families would commit the time and energy it would take to support their kids in a homeschool situation. It's not for everybody. But for kids like my little guy, this could be everything. This could make the difference for him. A chance to be semi-self-sufficient one day, you know? Maybe even be indepedent, somehow. Without something like this, I'm not sure I can teach him all he is capable of learning, even with the few hours a week we scrape by with help from Ms. One Hundred. God knows he's not going to get this kind of individualized teaching in public school."

"Okay." My friend and I kind of paused our texting for a bit.

"This idea you have..." It had occured to me I had just gone on and on, had never really asked about her funding source, and I realized I just wanted to keep talking about it, wanted to keep thinking about the possibility of helping The Boy to have a fighting chance at life and everything it could offer him. "This idea you have -- this person who might be able to fund a program like this.... what are the odds that they'd go for it?"

"I don't know, but I'm going to try," she said.

My friend was a sweetheart to even ask me. She probably got a lot more information than she'd bargained for when she texted me. But she has a good heart, and I believe she will definitely try. And that's really all we can do. We can try and we can dream outloud just in case anybody is listening.

Anyway, that's what I'd do if I had $100,000.

Parents Magazine Forgets Autism Awareness Month

2011-03-23T11:05:00.000-05:00

I just sent this to a friend:

I owe you an email - but before I get to that, did you hear about this??

http://www.facebook.com/topic.php?uid=63294986181&topic=14550#topic_top

Parents Magazine did not include anything on autism in their April issue --
Autism Awareness Month -- and people are *pissed*.

What do you think?

WHO knows the answer? The Boy does!

2011-03-22T12:12:00.000-05:00

Elsewhere in the world we've been chatting about those pesky WH questions so many kids with autism have such problems with, and you know this has been an ongoing problem around here. But I am happy -- yes oh so happy! -- to report that we are tackling a lot of those pesky WH questions right here in my own house. And you probably can already guess that Ms. One Hundred had a lot to do with it.

Me (pushing a Little People cat on a dinky car): "The cat is driving the car..... "What is the cat doing?"
The Boy: "Driving the car."

Me: "The cat is driving the car.... "WHO is driving the car?"
The Boy: "Cat."

It took a long time and a lot of hair pulling to get to this point. One thing Ms. One Hundred noticed was that if we put it this way, "Who is driving?" we could get either "Cat" or "Car" as the answer. Give him the full "Who is driving the car?" and we've cancelled out one of his options and he's almost got it licked. We mix up these questions with "Who's sleeping?" and "What's the dog doing?" and a whole bunch of others and it's a piece of cake. He's come so far with this, I'm thrilled.

Cat + Car

When it comes to "Where?" questions I will now bow down to the great people of Teach2Talk (and my friend Ms. Julie for lending me the DVDs). Teach2Talk has a whole line of fantastic DVDs and I will talk about them in more detail another time. But let me tell you, Teach2Talk's "Where?" DVD has temporarily replaced Olympic Diving as The Boy's favorite way to spend some quality TV time.

Thrilling questions like, "Where do we keep the food cold?" are answered, "In the refrigerator!" and "Where do cars get gas?" "At the gas station!" are featured on the DVD. The Boy loves this stuff. He can script the whole thing. Why is this good? Well, he not only can answer these questions himself now, but he has started to generalize answers to "where" questions, too. Questions like, "Where do we keep the orange juice?" are answered appropriately, as is "Where do you sit to eat supper?". Little guy couldn't articulate this stuff before. He might be able to show me, he could go get the OJ or he could sit down at the table but he couldn't verbally tell me. And abstract stuff was really hard to answer before the DVD, as in "Where do you see Coach Beth?" "At the JCC!" he can answer now, when he before, he could not.

Who? Where? What is he doing? are all coming along swimmingly.

Ahhh. But "Why?" (that nasty little Protestant word*). "Why?" is going to be really tricky.

*From Father Duddleswell of the BBC's "Bless Me, Father" from a million years ago.

One Year Old!

2011-03-20T20:59:00.001-05:00

Happy Birthday, Playgroup!

We have grown so much and I am so unbelievably lucky to know so many wonderful families. Can't believe it's been a year!

Look at these two posts from when we started in 2010 --

Friday, March 19, 2010

Fun Wanted

I am thinking about sticking my neck out and trying to start a local playgroup for little kids with autism and other special needs, especially our kids that are homeschooled. Nothing fancy, maybe just a small informal mailing list of folks nearby to get some people out to the park or a playroom once in a while. Nervous, though. It's like sending out party invitations, what if nobody wants to come? Or maybe just the mean people?

Must ponder this. What do you think?

***

Saturday, March 20, 2010

Okay, sticking neck STRAIGHT OUT

Well, I did it.

www.meetup.com/Nashville-Special-Needs-Kids-Playgroup [note: now on Facebook!]

I am the only member so far in the playgroup. But if I include The Boy and The Husband then that's three members. Oh we are growing already!

Come on out if you can : )

Fool me twice.

2011-03-16T17:12:00.001-05:00

The other day I posted about a few things that were going on at our house including teaching the little guy to recognize and discriminate faces that are "happy" or "sad". I've been having so little success, figured The Boy needs more time with it, seeing he has autism and all. Because, you know, some people with autism have trouble making that distinction.

Guess what? Turns out The Boy just doesn't want to show me he knows the difference between happy and sad. He can show Ms. One Hundred. And this morning he was able to show his Dad. Like it was nothing. Oh, happy or sad? Sure, Dad, this one is happy, and this one is sad. No problem, Ms. One Hundred. Just don't tell Mom I can tell them apart, okay? It's driving her nuts. I'm having a bit of fun with her.

Never doubt that boy.

EDIT: apologies -- Blogger will not allow me to comment on my own blog. sigh. But to Leslie and Lynn, yes, that boy is a little shit.

I know these things.

2011-03-14T21:34:00.000-05:00

Here are some things I know.

1. We had three events with our playgroup this weekend (Moms' Night Out, Family Brunch at Cracker Barrel, and Young Athletes at MyGym) and I am thrilled but freaking exhausted.

2. March Madness is a basketball tournament of some kind and not a shopping event. I learned that this week when we had to move our Moms' Night Out from a sports bar because they wouldn't take my reservation for 14. "You mean they're playing basketball ALL NIGHT?" I asked.

3. My kid really likes his daily spelling tests, go figure. Especially if he knows the words, that's a big confidence builder. But if he doesn't know how to spell something, that's okay, sometimes he takes a good swing at it anyway. Best part of a spelling test is on occasion The Boy starts hollering out words that he just wants to spell. Things like up, and sheep, and apple.

4. The Boy loves to count, doesn't mind simple math lessons, but so far absolutely hates learning about money.

5. When my little guy is really unhappy, he puts his hands over his ears and moans, "Arachnar, Lord of the Spider People!" This is from an old episode of Arthur on PBS that he never forgot. I do not know what it means except that things are not going well for The Boy right then.

No sign of Arachnar

6. If there was a way for me to permanently erase from my brain the recent evaluation scores The Boy got recently I would. I hate &#@!%$* evaluation scores.

7. Learning about "happy" and "sad" is gonna be a long road in our house. There are tons of games that can help with this and we may try those next, but so far understanding the facial expressions for happy and sad, not surprisingly, is proving to be tough for the little guy, this is a hallmark of autism. One thing for sure I know, we're not going near that creepy little robot.

8. A good man in the autism world is worth a million dollars, no joke. Love my husband, what a great dad he is.

9. My husband does not read my blog, so I can make the previous statement and his head won't swell a bit.

10. I am very lucky, for a whole bunch of reasons. Hope you get lucky, too.

Some days I just don't want to.

2011-03-10T16:56:00.000-06:00

Homeschool.

Some days I just don't want to homeschool. Especially on a day like today. I have been bossing The Boy around all week, he's been doing great with all of his work. But today I got our assessments from that research study I mentioned a while ago. Not surprisingly, my son has Autism, that hasn't changed in the last four years, whatdoyouknow. I still hate seeing all those proclomations in writing about him.

We are just about to start our homeschool afternoon, two hours late. The Boy has happily been watching Olympic Diving and I've been online goofing off, trying look up information about the assessments we received and also trying to take my mind off those same assessments.

And I even made a portrait of him and I. Want to see?

Ignorance is the disease.

2011-03-09T08:52:00.000-06:00

Autism Understanding and Acceptance.

I stole this post

2011-03-07T09:46:00.000-06:00

Okay, this is way better than anything I could have come up with today. Please take a peek at my friend Laura's recent blog post, it's scary how she can read my mind and know exactly what to say.

Stuff like this:

R: what have you been up to?
Me: Autism, autism , blah, blah blah

She's funny, she's sad, she's blah blah blah. Here you go...

+++

Could you at least bring back the hot chick?

Posted on February 22, 2011 by Laura

A friend of mine came to visit last week. I hadn’t seen him in at least 7 (probably 10) years. We live in different states, have very different lives and I guess we had just fallen away from our friendship. He was always one of my favorite people in the world. Smart, funny, straddling the fence between metrosexual and questionable sexuality, and in a way that just landed him more chicks in the end. In college, we used to go dancing at terrible clubs, take random road trips and just have fun.

When he first called and said he was passing through my town, I think I squeed an excited answer and immediately began to plot how to lose at least 30 pounds in 5 days. That still wouldn’t have landed me in a swimsuit catalog, but I would have been able to at least blame the other 50 extra on external factors- my husband is a chef, it’s baby weight, damn diabetes medication, these pants, whatever. Ok, i am seeing the holes in my logic, but vanity knows no such thing.

Continued here.

"Waiting for Superman". Have you seen it?

2011-03-03T11:32:00.001-06:00

Okay, here's a can of worms.

This particular can of worms is one that needs to be opened and discussed and pondered and debated and freaked out over and investigated and solved.

This movie can start a dialogue towards making things better for all kids and all schools. And there is a lot to argue about.

Waiting for Superman. Here's the trailer:

"When you see a great teacher, you are seeing a work of art."

Everybody needs to see this.

I got it from Redbox, it was a buck. You can see it on Netflix. You can get it at Amazon and Target. Watch the film if you can. I'm going to watch it again and then I'm going to come back with my thoughts on it. I would love to hear what you think.

It's actually a really, really great can of worms, and absolutely worth arguing about.

Making a Family Business

2011-02-27T20:41:00.001-06:00

From NewsChannel5.com:

Thrift Store Gives Jobs To Special Needs Adults

by Amanda Hara

"FRANKLIN, Tenn. -- When work became scarce for their autistic daughter, a local couple took matters into their own hands, and opened a thrift store where special needs students are encouraged to work.

For the first time in a long while, Sarah Krikac has a job and money of her own. But most importantly, the autistic 28-year-old has friends.

This is the impact Sara's parents had hoped for, when they opened up shop seven years ago."

It's a wonderful story -- the Krikac family started The Gear Foundation and Our Thrift Store -- and in turn created not only a fantastic employment opportunity for their daughter but for other young adults with disabilities as well, while serving families in their community. My husband and I admire the Krikac family very much.

We wonder what possibilities there will be for The Boy when he is grown. Maybe he will go to college and become an engineer. Maybe he will be a farmer or an elevator repairman. Maybe he will work for the Krikac Family in Our Thrift Store. Or maybe my husband and I will start our own Family Business, and provide jobs for our son and our friends' sons and daughters with autism and other disabilities. That would be our privilege, indeed.

If you'd like to donate to "Our Thrift Store", please stop by 10AM to 6PM Tuesday thru Saturday. And if you'd like to buy something they'd love to see you -- and they even have an Ebay store.

Who will he be?

2011-02-22T23:36:00.001-06:00

When you were a kid, what did you want to be when you grew up? At different times when I was small I wanted to be a hairdresser and also a double-agent for the Canadian government and somehow get interviewed by Harry Reasoner. I went on to none of these things, ended up in something I really, really didn't like, and then waitressed for a while, and then went to school to try something completely different and I wasn't very good at it. Later on I dreamt of doing cool radio interviews for Ira Glass or maybe to learn what everybody else around me was doing in this company town, but those jobs didn't pan out, either. And now I am a mom to a little guy with autism, and I'm as good at it as anybody else, I suppose.

I wonder about The Boy. I look at him and try to imagine him grown and it's just a fog. I'm not in any hurry for him to grow up mind you, I'm quite fond of him just like he is. But I wonder sometimes, and I don't know who The Boy will be. I don't think he can dream about grown-up occupations just yet, and there's no telling what his interests will be when he's older, but I thought let's just imagine he is who he is, and he likes what he likes, and not much might change by the time he's 21. As of right now, there may be two areas that might be sure fire for him.

He loves elevators. Oh he loves elevators. I have talked about this before, I know. But have I told you about the videos? These videos are fascinating and were lovingly created by someone who, well.... someone who REALLY REALLY likes elevators, you know what I mean? And my kid gets so excited to watch these. We get to see the doors open, we hear the videographer describe the make and the motor (??) of the elevator, and then we're inside and the doors close and then things get really exciting. We get to watch the man push the button, we see the numbers change as the floors go by. And then we get to watch the elevator doors open and sometimes we get out, and sometimes we don't, and we just head back down to the main floor again.

Lots of elevator talk on this blog.

Potential jobs: Tons! Just check out http://www.elevator-jobs.com/ He's very good with numbers, and he is a great admirer of a straight line. He might be a hell of an engineer, what do you think? He could design elevators. He could repair elevators. He might just bring back "elevator operator" as an occupation. This would be a labor of love.

Other vocations The Boy could consider might be something in the agriculture industry. My son loves animals, and he loves to eat. He doesn't seem to mind getting dirty. Likes plenty of vegetables and knows all his livestock sounds. This might be good for him. Once I heard him say, "Chicken.... buck buck, yum yum" so I guess he's okay with animal husbandry. (I have no idea where that came from but I was pretty surprised he made that connection.)

Potential jobs: Well, farm work, of course. Also, gardener's helper, and produce taster. My kid loves him some produce tasting. And if he would just stop growing, maybe he would consider jockeying, he loves horses so:

These are my son's two great areas of enjoyment right now. I am seriously watching carefully to see if I can help steer his interests towards a potential area of work for when he's grown. Like parents who see musical talent in their young children and sign them up for piano lessons, I am looking around for opportunities where we might foster the little guy's loves into something for the future. Might sound crazy, and of course I'm having a bit of fun with this in this post, but I'm half-serious. I am definitely thinking about "someday" lately, and what job opportunities there might be for The Boy, and how I might be able to help him dream a bit.

***

Tomorrow I'll tell you about a family who created a job for their grown daughter with autism, and also jobs for 20 other young adults with disabilties.

Everything looks better in the morning.

2011-02-22T12:26:00.000-06:00

Well, that was a pathetic little post yesterday, wasn't it? As I mentioned on my Facebook page I must learn to filter better, because everyone felt the need to send me virtual hugs. Wow, I have some very nice friends. Sorry, don't have too many bad days, that bit of whining just slipped out, I'm good for a while. Your hugs helped a lot. Truly.

And The Boy was his sparkly self today at the ADOS test. He did fine, better than expected. If you are in The Club you will know how thrilling it was for me to watch him imitate typical play through much of the testing. Not a lot of independent, spontaneous play but Rome wasn't built in a day.

Please come back tomorrow, I have something interesting for us to ponder, I think. With that in mind, let me ask you -- What did you want to be when you grew up?

More soon, and a million hugs back at you.

jen s.

"Putting on the socks."

Thorns.

2011-02-22T00:56:00.001-06:00

I had a bad day today. Lots of silly little thorns are sticking in my craw and I am just too tired to pull them out. Because there are a couple of really big thorns that are taking all my attention today, and I couldn't ignore them though I tried and tried. There is guilt and anxiety and defeat and impatience and afraidness (yes, I'm pretty sure that isn't a real word, but I refuse to say "fear".)

Today I was not a good homeschooling Mom. Today I didn't want to fight the fight. I am embarassed to say this. Nothing I could do to bring myself to sit down at that table and pull out the books. The Boy has recently had a lesson plan overhaul, and he is not pleased. He has been pro-actively uncooperative. I will have to fight through it, and when he is used to the all-new lessons they won't be new anymore and he will be okay and will learn. But until then, oh it is hard. Difficult. For him and for me and neither of us thinks it is any fun at all so there is definitely no race to the table.

Tomorrow... well. We are entering the final phase of The Boy's testing to get into a study at the local University that I mentioned recently. Tomorrow is the ADOS, the Autism Diagnostic Observation Schedule. "The ADOS is a semi-structured, standardized assessment of communication, social interaction, and play or imaginative use of materials for individuals who have been referred because of possible autism or an autistic spectrum disorders.*" I guess for this study they have to confirm my son has Autism. I don't think I will be terribly surprised at the outcome, since he's had his diagnosis since before he was two years old, but I won't enjoy this spotlight on the little guy, meant to show all his deficits, of which there may be too many, and strengths, of which there may be too few, in the eyes of the test.

I would like to speed up time a bit, I wish this were a week from now. The testing would be over, The Boy would have officially started the study and intervention. And maybe the little guy and I would have come to some kind of truce over our homeschool lessons. And maybe this tightness in my heart would ease up a bit, and just give me a break and let me sleep a little better than I have been doing of late.

What he means is...

2011-02-20T22:43:00.001-06:00

Quick ones:

"ride-the-horsie-back-riding" = going to horse riding lessons
"cheeseonit" = parmesan
"go to hospital"
and
"go to doctor"
and
"go to MALL" all of these = "Will someone please take me to ride an elevator somewhere?"

The Boy:
"Bite it!" he says, when you ask him if he wants an apple.

...what he means is:
"Don't cut it, okay? I want to eat the whole thing by myself."
[sometimes it just means, "I want what you have."]

The Boy:
"Here comes the Dad!" he states with conviction, as he waits for his father to come out of McDonald's.

...what he means is:
"Where is Dad with the food? He's been in there for a very long time now and I would like my cheeseburger."

The Boy:
"Don't touch the lamp!" he laughs, as he runs by me.

...what he means is:
"See? I'm not touching the lamp. I know I'm not supposed to play with electric things and if I do you will get the vacuum and I hate the vacuum so I'm not touching the lamp, see?

The Boy:
"I'm gonna get it!" he hollers, when he wants special attention.

...what he means is:
"Tickle me!"

The Boy:
"I love you, Mom. GOOD NIGHT!" he yells, as he puts his face next to my mouth for a "kiss".

...what he means is:
Ok. That's enough together-time. Get out of my room.

"ASD & PTSD"... When parents need help.

2011-02-18T15:08:00.000-06:00

"Listen to me: you are not experiencing these things because you are weak or because you're a bad parent or because you’re just not trying hard enough. You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time."

Read this important post for parents on this wonderful blog by MOM-NOS here.

Hey, that rhymes!

2011-02-16T22:02:00.000-06:00

We're learning rhyming words over here, or "word families" as the professionals seem to call it. We've been learning them for a while but it seems that, according to Ms. One Hundred, I have been pelting too many at The Boy for the past couple of months. Apparently it's not a good idea to give him five or six or eight different sets of rhyming words to learn all at one time. Ms. One Hundred has had us back off some, we're just working on two to give The Boy a chance to show us he's mastered them. Which of course, he has. Ms. One Hundred will see for herself tomorrow, I think.

I really enjoy word families in a nerdy sort of way. Tons of cool stuff out there for teaching them!

Did you know I have a good friend who has every toy and learning material ever made? And that friend lent me this the other day:

Lakeshore Learning's "What's The Rhyme? Sorting Houses" They are fantastic, and run about $30.

I found some of the best word families teaching materials at www.wordway.us.com/, it's amazing.
Here is a "slider" print out for the "ug family".

Wordway Ug Slider

I have no idea how to download this from this particular wiki site but I thought it looked cool.

Another great item from Lakeshore Learning, this is the Touch and Learn set.

And here is what I made, we've been having fun with it.

The Boy's favorite words from this bunch seem to be bug and cake.

The BEST place for Math Worksheets

2011-02-12T12:00:00.000-06:00

Now, you might not get worked up about this sort of thing but I do -- check out the most amazing site ever for math worksheets.... It's called Math-aids.com. Look at all these cool pages under the Kindergarden section!

Fill in the Numbers

Adding Shapes

Number Writing Practice

Match Numbers to Their Names

Complete the Pattern

Greater Than/Less Than

And you can customize all of them! Here is what the customizing page looks like for "Color the Shapes" Worksheet (click to enlarge).

And then it spits out something to your specifications!

Color the Shapes

This is a fantastic site, and there are worksheets for all grades. Everything in one place. Oh, The Boy is gonna be so bummed I found so many great math pages to work on. Ha!

Another token board idea!

2011-02-10T21:10:00.000-06:00

Take a look at what my friend Carrie made!

This is a rockin' little Elmo token board. Carrie saw the farm token board Ms. One Hundred made for The Boy and she just ran with it. Her little guy loves Elmo, so this was a natural for her. And she was so smart, look what she did -- she must have printed two identical screen shots of Elmo's World, and then from one of the pages she cut out the furniture, and the door, window, artwork, etc. from Elmo's room, along with pics of crayons and little screen shots of Elmo playing piano and playing with his computer. After cutting those pictures out she laminated them and added velcro to the back of each piece, and also on the corresponding parts of the laminated big picture. Looks awesome! (And I have to say I am a bit spoiled because after she made one for herself I told her how much I loved it and then she made one for me, too.)

Love the idea of making more token boards for The Boy, and maybe asking him which one he would like to use each day. My friend Miss Kim tells me she is thinking of making a racetrack, isn't that great? I have such creative friends!

I think for The Boy I might just make a place setting. Yes, a place setting! With a plate and cutlery and all his favorite things to eat. Wow. All his favorite things to eat? That's a lot of tokens...

Ok! Let's tell him what he's playing for!

2011-02-08T00:29:00.000-06:00

First of all, I cannot explain Token Systems better than this so I will not even try:

A token economy is a system in which an individual earns tokens for targeted behaviors. Once he has collected a predetermined number of tokens he can trade them for an item or activity that he desires.

[source: Jason M. Wallin, http://www.polyxo.com/]

Everything you probably need to know about Token Systems really can be found in Jason Wallin's article, please take a few minutes to read it if you'd like to learn.

We started using a Token Board at the urging of Ms. One Hundred, and The Boy lives to earn those little velcroed animals. Tasks I couldn't get him to complete before (like... anything to do with homeschool) are so much more manageable with this Token Board, I don't know if I will ever give it up. You can use whatever you'd like as a "reward"; for The Boy, he wants nothing more than to just get away from the table, so his "reward" is a break.

Here is our little Farm Token Board again.

Here are a few more token boards I've found around the internet:

http://www.autism-community.com/wp-content/uploads/2010/07/token-reward.jpg

http://www.abaresources.com/pdf/Iamworkingfor.pdf

ABAresources is a fantastic site for free token board downloads, they have tons!

http://www.difflearn.com/product/Token_Board/picture_communication

My friend Carrie made the coolest token board, it's Elmo! But I need to get a good picture from her, and as soon as I do I will post it, it's awesome.

Do you observe your child in class?

2011-02-04T12:26:00.000-06:00

Recently a friend of mine (hi K!) enrolled her little guy with autism spectrum disorder in public school. She mentioned to the staff and principal that she would like to observe her son in class and was told no. My friend was told that she would not be allowed to observe due to other childrens' privacy. I told her I thought this was bullshit and didn't sound legal.

Enter another friend (hi Gaynell!) who quickly supplied this link that says, among other things, "The U.S. Supreme Court's decision in Owasso v. Falvo establishes that students have no expectation of privacy."

My friend certainly could print off the Supreme Court's decision and wave it at the principal, say "Hellooooo, the Court said students don't have the expectation of privacy so can I come watch my kid at school now?" but I'm guessing the school might not be happy about this. So? you might ask? Well, here's so.... what if you don't know for sure what the ramifications might be once you push the staff to allow you in? What if you are worried about your son, and what consequences there might be for him if you do?

What if you are worried about your son, what consequences there might be for him if you don't go observe?

What would you do? What have you done? If you have a child with autism, have you asked to observe him in action at school? What was the teacher's response? The school administration's? Has the school been supportive of you, did they make you feel welcome?

How can you show the world how smart you are... if you won't show the world how smart you are?

2011-02-01T00:35:00.000-06:00

There hasn't been much to write about of late. We've all been sick and Homeschool has been closed for the past week. But something happened today that was verrrry interesting.

We took The Boy to be evaluated for a study at our University. The University always has studies going on, especially for the local autism crowd, but studies don't normally get my attention unless they look like they include a humdinger of an intervention, you know? Friends of mine had brought their kids to this particular study, some of them at my urging, but it never occurred to me to bring mine in for this one because my kid talks somewhat, and I thought this was for non-talkers only. Turns out this is not the case; and just because mine can toss a bunch of words out of his mouth it's not really conversation, per se. There's no "How was your day, mother?" or anything like that. Lots of requesting going on here, especially requests for food as in, "Can I have some cake, please mom? and notice how he gets all polite then, the little guy knows the Power of "Please". But there is more to communicating than requesting, or answering yes or no, or answering when somebody else initiates conversation for that matter. And that's what this study and accompanying intervention is about; increasing communication.

I don't know if the little guy has been accepted into this study yet, but if he is I will talk a bit more on that later. What I would like to tell you about today is how The Boy did during the evaluation itself this morning. He was freaking great. And here's why I think so.

About six months ago, The Boy was evaluated for a different study, by a different person. He was presented with the Leiter International Performance Scale-Revised (Leiter-R). This is a non-verbal intelligence test. I'd not seen this test before, and was eager to watch it be administered, and excited to see how the little guy would do. Didn't have long to watch beause the test was over pretty quick. Why? Because he either would not, or could not, participate. I felt bad for him. I felt bad for me. Seemed to me to be pretty easy test for him... it was all just pictures to match. He did that for me every day. Couldn't figure out what was wrong. The administrator saw my face and told me The Boy was probably anxious and we could try again in the near future if we wanted. Oh my dear God, I didn't want to see that test ever again. It was a horrible thing. Rendered my kid inert, somehow. I started to think of the future... What were we going to do? I thought, how can you show the world how smart you are.... if you won't show the world how smart you are?

(When I recounted this story to my friend Sarah, who also has a son on the spectrum that had been evaluated for a similar study, afterwards she asked me, "Did they start to tell you how cute he is? Once they start on, "Oh he is just so precious!" I know we didn't make it in, she said. Sigh. Yeah, I told her. Precious and adorable might have been mentioned.)

Well, if you've been following this blog you will already be familiar with one of the saviors in our story, Ms. One Hundred, she of the Big Brain. Not too long after that failed study evaluation attempt we first met Ms. One Hundred, and with her came the Farm Token Board into our lives. Changed everything. (I'll talk more about token boards next time.) As I said in the post linked above, not answering is no longer acceptable in our house, and that token board Ms. One Hundred brought us holds the key to that kid of mine getting up from the table.... answer as best you can or ask for help. If you do that, you will get a token. Get all 10 tokens on your board and you can have a break. Simple.

My kid loves all things Farm.

This now is a very long story but giving credit where credit is due, remember my friend, Julie? She's actually the one that suggested we take The Boy to this new study, the one we went to today. I told her the story of our previous bad-Leiter experience and she suggested we ask Ms. One Hundred to come with us. Ms. One Hundred couldn't be there today but she had suggested we ask if we could bring the Farm Token Board, because The Boy understands if he does his work then that board will represent a break; it won't seem like a never-ending time at the table, he'll know exactly how many tokens he will need to earn so he can get away from the work for a bit. And I'll be damned... it worked like a charm.

Now, as I said before, I don't know for sure if he's getting in to this particular study. And I don't have a clue what his score was on the Leiter he had to take today. But you should have seen the smile on my face on this side of the mirror, watching my little boy particpate in that test. He was engaged and attentive and... well, he made sure he got credit and kept an eagle eye on those little tokens of his, and he kept going. Best of all, the examiner was moving along at a nice clip, and flipping that chart over to the next set of pictures and the next... and at the end she smiled. I'll take that every day of the week.

And you know what else? Not once did she look at me with a sad smile and say, "He is just precious." She didn't even remark on his cuteness, although I'm sure she must have noticed.

Anyway, I think The Boy did okay. I am just so relieved that we and he have found a way to show the world how smart he is. Now that that's possible, we just have to teach him absolutely bloody everything under the sun. Thank goodness for that token board, we're going to need it. And thank goodness for good friends, and good therapists, and good people in general. Gonna need them, too.

More on token systems, next time.

"10 Things You Can do to Help"

2011-01-29T20:10:00.000-06:00

We're still fighting the good fight against never-ending virus in my household, so I'll leave you with this.

A whole bunch of sparkling information right here -- a blog in Psychology Today called "Autism in Real Life" by Kymberly Grosso has a recent post called:

10 Things You Can do to Help a Family Whose Child Has Been Diagnosed with Autism.

It's bloody briliant. Read. Learn. Have a cookie. Discuss.

Cough. Excuse me.

Revisit: Butterfly Day (Or The Very, Very, Very Hungry Caterpillar Party, Part 2)

2011-01-28T09:51:00.000-06:00

Now I'm sick, but The Boy is on the mend. This winter is never going to end!

Thought I'd show you the follow-up party to yesterday's Very Hungry Caterpillar Party post... Butterfly Day.

Revisit: The Very, Very, Very Hungry Caterpillar Party

2011-01-27T10:55:00.000-06:00

Okay, this is cheating. Today I'm reloading one of the most popular posts I've had here because The Boy has been sick and we are all recovering and I just needed to smile. Thought of this one because my friend Gaynell is teaching her young son the days of the week, and this is how we started to learn at our house.

********

Friday, May 21, 2010

The Very, Very, Very Hungry Caterpillar Party

Oh, it was fun. The Cutest Girls in Town came over today to have a party with The Boy, and he was so excited to see them and to have a "Happy Birthday Caterpillar Party" as he called it. I love having a theme to work with for these special playdates, and smarter people than I have already thought up a lot of stuff, thank heavens for search engines. Wanna see some pictures of our party? Here's what we did:

First, the kids all posed for a picture wearing the little "gardening" aprons I got for them at Michael's for about $2 each (even though they weren't going to play in the dirt today, these seemed appropriate for keeping little things in as we had our Caterpillar Day). These small people are so cute I could die.

Then we watched the short story from the DVD I got from the library, The Very Hungry Caterpillar and Other Stories, which was brief and very sweet.

Then we all headed over to the table to practice handwriting and days of the week with these great worksheets I downloaded.

After that, it was time to get down to business (eating and singing). You know the melody to the Adams' Family? Well, we snapped fingers and sang, "Days of the Week.... Days of the Week... There's Sunday and there's Monday, there's Tuesday and there's Wednesday, there's Thursday and there's Friday, and then there's Saturday! Days of the Week (snap snap)". And with the help of some days of the week signs I whipped up on my laptop and these amazing large bulletin board cutouts that I got at the Parent-Teacher store around the corner, we set about telling the story of Eric Carle's Very Hungry Caterpillar, snacking along the way with each appropriate fruit (ie. On Monday, the caterpillar ate through one apple....)

Some people found out they really like plums. Some discovered they don't like strawberries. The Boy confirmed he loves to eat almost anything. We all agreed everything tastes better on little toothpicks.

(I think I hung the cocoon upside down, but nobody noticed, I hope.)

Then we made caterpillars, with egg cartons and peel & stick foam shapes from Michael's.

Then we put them on the windows to admire them.

And then I brought out the surprise... a special Very Hungry Caterpillar made with a bit of sponge cake, brownies, icing, and pipecleaner antennae. I was very proud of this. When you google "very hungry caterpillar cake" and I know you will, you may see my inspirations for this very dessert. Please be kind, my interpretation may be lacking in the execution department, but not in enthusiasm. Everybody ate it up.

And you know I love that Boy. I saved him a little two-bite brownie and made him an extra special something for after supper, just for him.

Thanks so much to Miss A. and Ms. L. who were both camera shy but instrumental in pulling this off today. We'll have Part 2 of this party theme in two weeks, and I can't wait : )

Have you heard of CheeCha Puffs?

2011-01-26T17:09:00.000-06:00

Thought I'd pass this along ---

CheeCha Puffs. Kinda fun to say, no? My friend's 4 year old practically went on a hunger strike when they ran out of CheeCha Puffs last week -- his Mom called everybody and couldn't find any at all in the state, had to contact the manufacturer up in Canada to see if they could help her and they were fantastic. She received her shipment of CheeCha Puffs (GFCF Sea Salt & Spiced Pepper), her little man is eating again, everybody is happy.

Thought I'd let you know that there is a give-away going on via Facebook. CheeCha Puffs says "All of Our Products are Nut Free, Cholesterol Free, Trans Fat Free, MSG Free, and Dairy Free." The Gluten Free Cheecha Puffs include Original Potato, Luscious Lime, Sea Salt & Vinegar, Sea Salt & Spiced Pepper, Mediterranean Ginger.

If you'd like to enter the contest click here for a link to their Facebook page and become a fan and "like" them by February 1st for a shot at their prize pack. And save me a handlful, will you? Darn things are addictive.

S-I-C-K

2011-01-26T14:15:00.000-06:00

Oh, The Boy has had a rough couple of days, the poor baby. Not a lot of homeschooling going on around here. Not a lot of much going on around here. I told my friends on Facebook yesterday that his vomit-warning-system consists of "NO THANKS!" just beforehand.

Hope you and yours are healthy, I'll be back when my little guy is feeling better.

On being Out.

2011-01-24T00:30:00.000-06:00

I have a child with autism and pretty much everybody who knows me, knows that. We came out very early to people, I think The Boy was not quite two years old and a couple of months past his formal diagnosis before I told my family, but since then we've been pretty matter-of-fact about it. It's almost part of my self-introduction now, "Hey, I'm Jennifer.... my son is six and has autism." I've always called it being Out.

I don't know why I am so up-front about it. I think it's to get it out there, to get it over with. I don't like anybody looking sideways at the little guy, trying to guess... Tell 'em, then okay fine, that's out of the way, let's move on.

Some families are not Out; some do not feel it necessary for one reason or another to broadcast the information. Some feel it is private, some just can't talk about it right now outside of their immediate circle, if at all. Upon hearing another family has a child on the spectrum I'll ask, "Oh, are they Out?" Usually I ask so I make sure I don't say the wrong thing at the wrong time in front of others. It is not my job to Out people, and I would feel horrible if I did that even accidentally. People will come Out when they're ready. It is not easy, and probably doesn't make it hurt any less at the beginning, but over time it will help, I think.

If you haven't come Out yet, I hope very much that when you do you will feel comfortable around us and other families with autism some day, and know that we will be there to support you if you need it, often in ways that people outside of our community cannot. I think I just wanted you to know we will be here when you are ready, and that Out does not mean outcast, I promise.

Right now, I don't worry about it much, either.

2011-01-20T17:59:00.000-06:00

I did not write this but check it out --

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By Marj Hatzell on January 13, 2011 at The Stir

I Don't Care What Causes Autism

What causes autism? The latest "This is related to autism" study really struck a nerve with me. You know, the one the other day that found that babies born close together have a higher risk of autism? Normally, I read the articles and think, "Hmm. Okay. That's interesting." And then put it out of my mind and forget it.

Forget it? Yes. Because until they come up with more definitive links, I'm not going to worry my pretty little head about it. Mostly because I don't really give a rats arse what causes autism.

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Please go here to read this great post.

Don't ask me that question. Don't ask anybody that.

2011-01-16T01:42:00.000-06:00