Wednesday, December 28, 2011

I'm out, for now...


I have been enjoying the holidays! How about you? As expected, there is a tinge of crazy in the air at our house. Breaks from school do that to the boys, and we roll with it as best as we can.

So, I'm taking a break from blogging for a few more days. I need to pack up all of the Christmas decorations and figure out where to put all of the new toys. Let's not forget my most important job - playing the role of peacekeeper so the boys don't tear each other apart (or the house!).

I'll see you back here in January! It's only a few days away... 

Sunday, December 25, 2011

From our house to yours, Christmas 2011

Wishing you a very Merry Christmas and Happy Holidays!

Prince Charming

Monkey
 
Titan makes a great shade tree when needed!

I hope you have a wonderful day spent with your family and experience all the joy that the season brings!

For unto you is born this day in the city of David a Savior,
who is Christ the Lord.
Luke 2:11


Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color and style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned...

Cindy Waeltermann is the Founder and Director of AutismLink, and is a parent of two children on the autism spectrum. She is also a published writer in several computer software magazines.

Saturday, December 24, 2011

Christmas Eve Schedule

I bet you didn't know that there needs to be a schedule for Christmas Eve, did you? Well, according to Monkey, he's got it all figured out. He wrote out a schedule for us on Monday, the first day of winter break, and he posted it on the fridge for all of us to look at. Every morning since then he has reminded me that there is a schedule for Christmas Eve and I need to read it so that we can be sure to follow it that day.

I have to admit, I got a bit of a chuckle out of it. It's a strange combo of his dream day melded in with parts of our typical routine. Some of the times are a bit interesting…like dinner! I think maybe he doesn't want the day to end considering it's a schedule he created and the fact that it’s Christmas Eve. I hope he’ll be flexible, because I guarantee things won’t go exactly how he planned.

Anyway, for your viewing pleasure, here is Monkey's Christmas Eve Schedule. I'll translate it for you below, in case you have a difficult time reading the pencil on white paper.  

Don't you love my fridge magnets? And, yes! Those ARE coffee beans!

Christmas Eve Schedule

8:25 – Wake up
8:30 – Breakfast
9:15 – Get Ready
9:35 – Put on clothes
9:45 – 11:00 – Play on computer
11:05 – 11:40 – Watch Charlie Brown Christmas
12:20 – Lunch
12:55 – Break (Do anything)
1:50 – Talk about what you think Santa’s going to put in your stocking in living room or family room
2:30 – Quiet time
5:00 – Break
6:10 – Do car site: (Me)
7:40 – Play Wii: Rec Room = ALLEYBALL
8:15 – Dinner

Merry Christmas Eve, everyone!

Thursday, December 22, 2011

Weird thoughts and nightmares

Something new has cropped up with Monkey over the past few weeks: nightmares. My husband and I have tried to figure out what prompted it, but we are at a loss as to when and why it all began, and how we can best help him through his fears.

An example of one of those evenings goes a little something like this:
After the kids have been put to bed and hubby and I are enjoying a quiet house with our feet up in the family room, a stealthy figure will appear in the darkness. It’s Monkey. He’s climbed out of bed and slipped down the hall to stand there looking at Titan until he is noticed. It always catches my husband off-guard, seeing a ghostly figure eerily staring at him in the shadowy darkness. When we finally see him and Monkey begins walking toward us, now without hesitation, I can already see the look of sadness on his face. I may even see the tears beginning to fall as he enters the room.
Of course, I immediately open up my arms to beckon him toward me and I say, “Honey, what’s wrong?” His response is always the same as he begins to openly cry and quickly crawls into my lap for an embrace. “I don’t know.”
Me: “Why are you sad?”
Monkey: “I don’t know.”
The crying continues while I hug him and stroke his head, and Titan and I look at each other for unspoken ideas of what to do next.
At some point while I calmly talk with him I am able to get him to reveal a snippet of his nightmare. Initially, that’s what we thought was going on. But instead of a true nightmare, we’ve discovered that he is having some sort of bad images and thoughts come into his mind as he closes his eyes to fall asleep. Thus, it makes him scared to close his eyes for even a few seconds, fearing that he’ll see those things.
Falling asleep has become a huge source of anxiety and he is unable to fully express what’s happening. Titan and I fumble along, trying to help him as best as we can without having all of the information. The saving grace is that these occurrences do not happen every night. But when they do, they are fairly upsetting and traumatic for Monkey.  
We have rephrased his experience as having “weird thoughts” or “yucky thoughts.” Our hope is that by convincing him that thoughts are easier to control than dreams, it will help alleviate some of his anxiety. Eventually, I hope the idea sinks in that he can change his weird thoughts to good thoughts.
So, we sit and rock in my chair, cuddling while I talk softly and help him stop crying. We talk about the particular yucky thought he had that night and how unlikely it is to actually happen in real life. I remind him that his bed is a safe place up high in his loft with railings all around, with a thick and cozy blanket, and a pile of stuffed animals to protect him. We talk about many things and I reassure him that he is safe and doesn’t need to worry or have weird thoughts.
In order to help him through his fear, I have come up with a plan for him. As with most children on the spectrum, having a plan in concrete steps is much easier to manage and internalize. Some of the options I have given him for his plan include his favorite activities and play to his strengths so that they are easy for him to remember and try.

Tuesday, December 20, 2011

Product Review: The best GFCF dinner rolls ever!

I really mean that! The BEST ever. Do you have any idea how many different gluten-free recipes and brands I’ve used over the past several years? A lot! Do you know how many times extended family and friends have paid me fake compliments as they choke down the GFCF bread bricks that I serve fresh from my oven?

It usually starts out with me saying something like this:

“I tried another new gluten-free, casein-free, soy-free, egg-free, nut-free bread recipe! I hope it turned out okay!"
They reply back with something to the effect of:
“Well, for gluten-free they aren’t bad.”
Uh huh. Sure. Great way to dodge the fact that they taste like crumbly, heavy cardboard. I think I’ve only ever heard a truly positive remark once. It was in regard to a box mix I tried out last Christmas - Gluten Free Pantry’s french bread and pizza mix. It was decent enough. Generally speaking, we no longer go out of our way to eat bread because gluten-free varieties are always so disappointing.
But things are different now. I found the bread mix that puts all other gluten-free bread mixes to shame. I first tried it last month for Thanksgiving dinner with my parents. I made rolls again last night for an early Christmas dinner with my husband’s dad and his family. Do you want to know what the response was? It wasn’t the polite, “these rolls are better than the last ones you made” kind of remark. Oh no, indeed! We had entire conversations about how awesome these rolls were. The response was overwhelmingly positive! For Thanksgiving, we ate all the rolls in one sitting. No leftovers! That was a first! For our early Christmas dinner last night, I made a double-batch (anticipating a good response) and there were only a few left over. By golly…we have success!
I was introduced to this mix by my good friend, Granny Lala, an allergen-free baker. She is most definitely in the know! After she and I did some beta testing on some new sandwich rolls in her commercial kitchen one night, she was extremely generous and sent me home with a sample of this mix to try.
I know you’re dying to know what the brand is and where to get it. Are you ready? Go get a pencil.  

Friday, December 16, 2011

Guest Post: flappiness is...

About 2 weeks ago I had the pleasure of reading a brilliant post by a new blogger I’d never seen before. I was so moved by what she wrote that I immediately scrambled to get in touch with her to beg her to allow me the opportunity to share those amazing words with you, my dear readers. Well, as you probably figured out, she said yes!  

I cannot even tell you how happy I am to have Leigh from flappiness is... with us today! She is a school media specialist and mother of a 4 year old neurotypical daughter and a 2 year old son who falls somewhere on the autism spectrum.

Leigh was kind enough to participate in an  impromptu interview, and I think you will agree, she has some great stuff to share.

After my interview with her, you will have the chance to read her post, “An Apology From Your Child’s Former Teacher.” In her post she describes being a teacher, who despite her best efforts just didn’t “get it” when it came to her special needs students. Now, as a parent of a special needs child, she finally understands. I guarantee your heart will be touched by her words.

Please be sure to catch up with Leigh on her Facebook page, Twitter, and her blog. You’ll be glad you did!

Wednesday, December 14, 2011

Getting rich off an autism diagnosis

Doesn't the very idea of getting rich off of your child's autism diagnosis seem laughable? I mean, if there was a way to turn autism into a profitable enterprise, I would definitely be living on easy street with 2 boys diagnosed on the spectrum. The whole notion is absolutely ridiculous. Crazy. Cuckoo. Ludicrous. Insane.

Well, imagine my surprise when I saw a post in my Facebook feed yesterday that was titled, "Attorney Claims Autism Parents Are Just In It for the SSI Gravytrain." Say what? Come again? An SSI Gravytrain? Wow, if only I had known!!!

Give me a (insert your favorite expletive here) break.

Intrigued, I clicked on the link. And then my jaw hit the floor. At first I thought maybe it was a joke. When I realized it wasn't, I started getting angry.

The post linked above talks about an article from the The Los Angeles Times, as part of a series on autism. The focus of my shock and dismay was a comment posted by a reader in reply to the article. It reads:

"Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this "epidemic." Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism."

Okay...whoa! Did she just equate autism with retardation? Did she just say that autism is every parent's dream ticket to government support? Did she say there is a great deal of funding for autism? Holy crap. Did I just step into the Twilight Zone here?

Let's just get one thing out of the way first. Autism is NOT automatically synonymous with any sort of intellectual disability. A majority of children on the spectrum are of average intelligence or even above average. This kind of comment proves to me how very uneducated she is about autism.

Moving on to the laughable portion of the comment...seeking an autism diagnosis in order to get a government handout. Are you kidding me? And, I'm dying to know where all the money is that she's speaking about. In my beautiful State of Washington, when you go through and file disability paperwork through the proper department, I've heard the wait can be anywhere from 3 to 8 years. Yes, that's right. Three to eight years! Oh, and our family doesn't qualify, by the way. We don't have a "classic" autism diagnosis. We're not the only ones. Lots of people I know are not able to qualify their children even though they could use some help.

My State is desperately underfunded and unable to keep up with the increasing needs. We are facing a huge crisis here due to lack of funding and lack of legislation. In Washington, autism is still a diagnosis that is widely discriminated against by insurance companies. This creates a major financial dilemma for families who are trying to care for affected children with proper medical interventions. An autism diagnosis is definitely NOT the golden ticket. If it is elsewhere (by some miracle), maybe I should move!

I guess the whole point of me bringing this up today is that comments like these prove how much education still needs to be done about autism. The woman who made these insensitive and clearly ignorant comments just doesn't get it (and probably doesn't want to get it, as far as I can tell).

Those of us in the autism community are very "aware." We obviously don't need Autism Awareness Month in April to remind us of our daily experience. Besides, talking about autism all of the time can be exhausting, and at a certain point it can become a worn out topic. But, we still have a big job to do.

The world needs to know what we go through. The world needs to know what our kids go through. The world needs to know that we have a big problem on our hands as this generation of affected children is quickly growing into adults. The world is not ready for them yet. Our kids need to have the best possible chance to succeed, and I guarantee we are NOT doing enough right now to help them. I see gaping holes in proper services and interventions every day. My hope and my dream is that all of this will change...before my boys are all grown up.   


*One last note - a disclamier of sorts:
I thought I should let you know that I saw the link to this post from the Facebook page for the Thinking Person's Guide to Autism. I requested permission to post about this article but did not receive any direct communication back via email or Facebook comment reply. Because I felt so strongly about the topic, I thought I would go ahead and write up my post. I hope that they are okay with me doing so.

I sincerely encourage you to not only visit their Facebook page, but please read the article referenced above in its entirety. It gives a lot more information that is worth the extra time.

Please share your thoughts about this in the comments! Am I the only one who is gobsmacked by this woman's comments?   

Monday, December 12, 2011

How It's Made: Local Edition

Have you ever watched the show, “How It’s Made?” My hubby and I love that show! Titan recently discovered that Netflix has the episodes available for instant viewing. He was watching one of the shows on a Saturday a few weeks ago when Monkey wanted to know what was on TV. He immediately sat down on the couch, transfixed by the various machines and things moving along the factory assembly line in the program. Then Prince Charming wandered into the room and had the same response. They were both hooked on the show immediately.

Since then, it’s become a sort of weekend tradition to watch a couple of episodes in the afternoon. They take a moment to read through the list of items featured in each episode and choose the one they want to watch. It has been a lot of fun for them and they like to learn about how various things are made. I am not looking forward to when we run out of episodes to watch!
The show is so beloved that I will now hear Prince Charming humming the theme song repeatedly. If you are familiar with the show, you are aware that the theme song (if you can call it that) if very short and simple...something like an 8-second sound byte. At some point during the day, Titan will ask him to stop because he cannot handle hearing it for the 9 billioneth time.

We were out and about this weekend running errands and Prince Charming and I were both very thirsty. We had just left the mall because it had just closed for the night, and we realized that the only places still open were going to be sit-down restaurants and fast food joints. We wanted a quick drink and didn’t want to have to drive far to get it. Across the parking lot from the mall is a fairly new Krispy Kreme shop. I personally do not like Krispy Kreme products (unlike the vast majority of people I know who love them!), but they were open and it was only going to take us a minute to get there. So, we headed off in that direction.
I had forgotten that they have a viewing window so that you can see how they make their donuts. The boys had never been in the shop before and once inside we all suddenly forget how thirsty we were just moments before. The show, “How It’s Made” was happening right in front of our own eyes!

After about 3 minutes of watching the donuts on the assembly line, Monkey asked if we could see if there was a How It’s Made episode about making donuts. Titan reminded him that if there was an episode, it would never be as good as standing there right now, watching it happen in the Krispy Kreme shop.
I grabbed some bottled water and we sat at a table next to the viewing window while the boys stood there, enchanted by the experience. We probably stayed in the store for a half-hour watching the donuts move through the various components of the line and become the warm, soft donuts that most people really enjoy. (I have to admit that thinking about the donuts being hot and gooey kind of makes my stomach turn...)



Even though we are the weird family that goes into a Krispy Kreme and only buys water, we all had a lot of fun watching the donuts being made. It was our own local edition of “How It’s Made” and we loved it!      

Friday, December 9, 2011

Girls just wanna have fun

TGIF, people! My gal pal, Miss C, is in town visiting. Guess what that means? Chocolate and chick flicks! I've had a busy week, so I'm ready to chillax to the max! I'm thinking it will be a put-your-feet-up-and-watch-a-funny-girly-movie-and-overindulge-in-coffee-and-all-sorts-of-chocolate kind of a day.


So, to celebrate that the weekend is once again upon us and that I will be taking a little sanity break with my friend, I thought I'd recycle the post I wrote that describes what I have planned today. There is an update since I wrote that post in March...both of my boys are now in school full day, which means we can watch our movie uninterrupted. Yessssss! Can you hear the angels singing?

Happy Friday to all! Now, be good readers and click here to see the original post. There's even a picture of Johnny Depp! :-) 

Thursday, December 8, 2011

We heart Christmas

I'm a bit under the weather... So, instead of trying to stay up late to type up a brilliant new post (modest, aren't I?) or recycling an old post (also likely to be brilliant - LOL!), I thought I would instead share a couple of pictures with you from when we decorated our mantel for Christmas. Caught up in the excitement of the holidays, Monkey wanted to add his own personal contribution to the decorations. I love that kid.

Monkey putting up his Christmas sign.

We heart Christmas - so cute!

Tuesday, December 6, 2011

Generosity and Guilt

It’s the holiday season and there are a lot of requests out there for “donations to a good cause.” The one that stands out immediately in my mind are the bell ringers with their trusty red buckets. Is it just me, or do they make you feel guilty? Have you ever noticed how they speed up the ringing of their bell as you approach? They watch you avoid their glance as you hurriedly walk by, and it feels like they are silently judging you for not dropping your loose change into the bucket! Oh, the pressure!

This feeling is made worse when I am walking into a store to buy gifts for other people, or better yet, when I’m shopping for something that is completely ridiculous and frivolous. Then there are the pleas while checking out at the cash register. “Would you like to donate a dollar to (insert wonderful cause here)?” Once again, it doesn’t help the feeling at all if I am buying something completely non-essential, or if there happens to be among my pile of groceries, say, 5 candy bars that I intend to squirrel away for those sort of days when chocolate fixes everything (and maybe shove 1 in my face when I get to the car...for good measure!).

When being confronted with an opportunity to give and I respond by not giving…it makes me feel guilty. I’m not the only one, right? I know it’s somewhat irrational. But I do feel the guilt. Well, at least I did.

If I had to pick between calling myself a giver or a taker, I would describe myself as a giver without hesitation. I give throughout the year – tangible items, money, time… All of these things go to worthy causes that I feel good about making a contribution to.
My husband and I both feel strongly about being generous whenever possible. This was something we talked about back when we were first engaged and were planning out how we would handle our finances as a married couple. It is still a part of our conversation today.

Over the past 5 years I have changed my views on giving money away without a second thought. Since our family has endured cancer, and now autism, I’ve learned that you really should research the organizations you give money to. It makes sense to know the organizations before you start handing over your hard-earned dollars. And, that means knowing them beyond just their name. Even though an organization has a particular keyword in its name or is the most recognized for its particular little piece of the charitable world, it doesn’t mean that’s where your money could have the most impact. If you look into some of those organizations you might find there are some less than savory ways your money could be managed. Unfortunately, there are many nonprofits that pour their donations into things that are less than charitable. And, I have to say, bigger is not always better. Sometimes bigger is much worse.

These days I try to focus on giving money to places that my family has had direct contact with or benefit from. I love giving to local organizations and churches that keep their money in my community and help those that need it here at home. I think this is a much better idea than funding an overpaid executive’s retirement package 20 states away. I like knowing that my donation will make a tangible impact locally.
Giving of my time is now the largest contribution I make. I don’t have much money to give (being the mom to 2 boys with autism is bloody freaking expensive!!!), so I give what I can, and that includes my time, energy, effort, knowledge and passion. I started volunteering about 4 years ago for the things that impact my family the most. And, it’s so meaningful! My hope is that it’s meaningful to many others as well.  
In the past year or so, I finally came to grips with my crazy guilt over not always donating to the cause that’s right in front of me. I am now okay with not being generous in every single moment. I still do give away money, when I can spare it. I also recognize that I am doing my best to be generous over time, and for the things that matter the most to me.
Want to know what I say to the checker at the grocery store now? “No thanks! I have my own cause to support. I have 2 boys with autism and they get every penny I have to pay for their therapies and treatment. Besides, I also run a special needs support group and nonprofit organization, and I could really use some donations for those things, too!” You would be amazed at how many business cards I’ve handed out and how many people I have talked with about autism in the grocery store after dropping a line like that.
And I think that’s something to be proud of. Guilt, be gone!  

Sunday, December 4, 2011

A birthday gift for you!


These are the countdown blocks we have on our mantel.
It's 21 days to Christmas and it's my birthday!
To celebrate, I'm giving away a gift to one lucky reader today! If you wish to enter to win a coffee mug, leave a comment below this post or on the Facebook page. Please tell me about your favorite holiday decoration or tradition. AND, don't forget to include your email address so I can reach you if you win. I will choose one lucky winner after 10pm Pacific Time.
Good luck and Happy Birthday to me! :-)
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