Autism Speaks, But You Should Listen Carefully

I’m trying to enjoy a personal makeover night, but something is bothering me way too much. My eyebrows will have to wait. I’m going to put on my serious hat I guess. Don’t worry, it’s temporary.

March is ending, and we are nearing April–Autism Awareness Month. I’ve just done up a little photo of my son who has autism. He’s so cute. . .I know, right???

AUTISM SPEAKS: WHAT THEY SUPPORT

I got all excited about ‘Light it Up Blue’ sponsored by Autism Speaks. So, I posted on Facebook, “Hey guys, let’s do the light thing. . ooooh, and I should get blue hair extensions. . . When is the walk thingie???

A fellow Tweeter brought me back to reality. Here’s the deal. In the spirit of awareness, I think those of us who do know about autism should educate ourselves more on organizations that collect money for autism. That’s going to be my personal goal for the month. Right now I’m taking the time to look into it and translate it to the typical parent. I’m not telling you who to give your money or support to. I’m just advising you to know what ’cause’ you’re supporting.

Elephant in the room here: Autism Speaks donates most of the money they raise to RESEARCH; as in PREVENTION and CURE. Here are their words to describe who they are. Please note the order in which these items are presented.

Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

And it looks like they started off with a donation of 25 million dollars. . . HUGE. I’ve noticed lots of family resource and awareness efforts on their site. And I’ve also noticed that they see autism as crisis; a disease to cure or prevent. Again, their words describing their mission:

“At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. [sic]. . . take action to address this urgent global health crisis.

Crisis? Hope to my hardships? Struggling with a disorder? I don’t know how I feel about this. Cure Alex? Weird. Though I’ve said before that I wish I could scrape the autism off of him, did I mean cure him? I don’t think so. Do I want my money to go to changing him?

I also learned a new term: Curebie. . .The defining characteristic of a curebie is a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs.

Regardless of differing opinions, most right-thinking parents will do the best they can for their children. I’m just saying: ask yourself what you want your money going toward; what is your cause? CURE or CARE???

My personal choice is CARE through local organizations who try to make life easier for parents. That might not be your choice; all I’m saying is BE AWARE of who you support. Just because Autism Speaks is prominent and “fun” doesn’t mean you want to support their cause. They’ve raised a lot of money–and use that money well for MARKETING their organization. Don’t get caught up in their ‘woop-de-do’ without reading the fine print. 

Climbing off of my soap box now.

Other organizations you might choose to support:

Zac Picto: Virtual assistant for people with autism—pics, schedules, social stories and much more–offered to parents and ANYONE for free. Woot!

National Autism Association: Responds to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.

Autism Society of America: Exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

Easter Seals: Provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.
 

OKAY, I’m going to do my nails now, but stay tuned for my post about parenting a kid with autism vs. parenting my “normal” kids. Blahahahahahah!!!!! Normal kids . . .that’s an oxymoron. Blahahahaha!!! I’ve got your struggle right here. . . .any one of them could be the next pain in my ass I tell you. Autism scmautism.

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Goodnight Sweetheart

Getting kids to sleep through the night has never been my best skill. I know it started with Alex who would take an hour to get to sleep and wake up five times during the night. How many parents go through the day “parenting through fatigue,” bleary eyed and wondering what it would be like to have 4 hours in a row? Believe me, I spent many years doing that.

So my littlest is now 5, and I’m hoping we’ve made it to the rare, “Mommy?.  . .Maameee. . Maaaaamee!. .” during the night (and there better be vomit or a nightmare involved). But getting a 5 YO who wants his mommy to help him sleepy is not always easy. So, I give you my dialogue with Harrison from the other night:

Harrison: “Mom, will you stay with me until I’m asleep?”

Me: “Sure.” (Hanging my arm over the top bunk of the bed to grab his hand.)

[3 minutes pass, my arm is now asleep, but the child is still awake.]

Me: “Harrison, I’m going to the bathroom. You pretendyou’re asleep okay? And I will be riiight back.”

Harrison: “Um, okay.”

. . .ZONK. . .And he slept happily ever after.

THE END

I’ve Got Your Back, Brother

Tonight Alex and Zach had a fight; disagreement; okay a downright skirmish, if you will. I don’t know the exact details, I just know in the end Zach got slapped. Don’t take this out of context. It isn’t about hitting or violence from kids with autism. That part is incidental in this case. After the apologies and the hugs, I got to thinking about being a sibling of a kid with autism. I got to thinking that these sibs put up with a lot of crap, and they should be recognized as the fantastic little people they are. I watch them consistently make hard decisions and change their behavior to help Alex. (Yes, I also see them give up on Alex and run off too. I’m not your Polly Sunshine, let’s be real.) I do know that Alex is so blessed to have four fabulous role models and friends in his life.

Body socks for everyone!

 So I wrote a little somethin’ that could be from Zach’s point of view. Please note–Zach did not write this–I did. 

Dear Alex, 

I noticed mom was extra tired tonight, so I helped Harrison with his pajamas. I have lots of energy, so it’s no big deal. I like to help. I help you a lot too.
I invite you to play my games, and  I try to get you to come away from that computer. Sometimes I think your hands are glued to that thing. 

 I know that having autism means you want to be alone sometimes, and I know you’re different in lots of ways. I’ve spent my whole life figuring out what that really means. Sometimes I figure it out the hard way.

I like to do stuff for you though. Most of the time I do stuff for you without even thinking about it –you’re my big brother; but sometimes I have to be the big brother in our family. I’ll do that for you.
I explain stuff to you. I teach you.
I know that if I show you how to act you can copy me and it makes things easier for you. I learn from you too, because you’re super smart at puzzles and video games.
Sometimes if you have a hard time telling people what you’re thinking, I help tell what you’re trying to say. I know you so well that even when it’s hard for you to talk, I can say it for you.
We get in fights sometimes. All brothers do that. But when you need me I defend you. I have your back.
The thing is–I know I don’t have to do all of this. Nobody makes me.
I want to because you’re my brother.
Because I love you.
I know you’re special. And I’m special too.

Love, Zach

D, Zach, Alex, Harrison, I

Bonne Appetit

Okay, it’s like, “candy season” am I right?  

Zach: "Lookie Mom, an apple!."

How many of us Autism Mommies wonder if we need to become part of the “special” diet? I mean, it’s hard enough to get some of these kids to eat ANYthing. “Here Honey, have some beef jerky for breakfast. . .ANYthing. . .”  

I give Alex kudos for trying new food, but he is definitely cliche when it comes to “picky” eating. And when it comes to autism and food, think of me as the average, every-day application of dietary advice. In other words. . .I don’t have the time or energy to go buy gluten-free ingredients. That would also require me to mix them up; which isn’t my best skill.  

I try to supplement my kids’ diets with Instant Breakfast, and I know all kids do better with proper nutrition–whatever the specific perameters are for that kid. So, the jury is out for Autism Momma regarding special diets. I’m all for it, but I’m not sure how to implement it. However, I’ll go ahead and carry all the guilt for all y’all, so please. . .let it go.  

If you’re ready to take the leap, Future Horizons publishes a book called Special Diets for Special Kids, with over 200 gluten-free recipes.  Click the image below to learn more. GET THIS: When you check out, enter the code MOMMA to receive 15% off and free shipping (in the Continental U.S.)!

Hello? Did you hear me?

15% off and FREE SHIPPING.

In addition, here’s an article sent to me by Future Horizons with some timely and  serious advice for ANY kid, but especially our sensory sensitive kids. Let me know how session 13 goes with the peas.  

Autism Asperger’s Digest
March-April 2011 issue

Column: Sensory Smarts              �
 www.AutismDigest.com  

How To Diversify a Diet When A Child Has a Significantly Limited Food Repertoire  

Do not withhold the few foods that are acceptable. If you take away that one brand of mac n’ cheese, you’re taking away one of the few sources of nutrition for your child, even if it is a poor one. Pizza can be healthy if you buy or make it with high-quality ingredients.  

 I start by identifying one food the parent would like to add to a child’s diet, typically a fruit or vegetable. If possible, the child selects the particular fruit or vegetable.  

 Here’s how we approached a similar situation with a client your daughter’s age. She and her mom identified bananas as a food she would consider eating “when she is older.” For about 10-20 minutes each session, we worked on bananas. Session 1: We made a collage of banana pictures. Real bananas were within sight. Sessions 2-4: she learned to slice bananas and fed them to her mother, in a playful, unpressured interaction. She smelled and felt the banana and observed her mother enjoying it. Sessions 5-8: She touched one banana slice to her lips before either feeding it to her mom or throwing it away.  Sessions 9-12: She touched the banana slice with her tongue and threw it away. Sessions 13-14: She nibbled on the banana slice and then spit it onto a napkin. On the 15^th session, she swallowed the nibble. Sessions 16-17: She ate one slice of banana. Session 18: She ate half a banana. Now she loves bananas and has selected sweet peas as a vegetable she will eat when she is older.  

 While you do want to “work on” just one food at a time, don’t give up introducing new foods. When it’s dinner time, go ahead and serve her favorite food but also make other food available on the table. One exception is if your child cannot bear the smell of a food such as brussel sprouts, which may be so nauseating that she will be unable to eat at all. Remember that it may take dozens of introductions before a food becomes familiar enough to try. Here are a few other ideas:   

 Combine acceptable foods with new foods. While your sensitive child will immediately detect when you’ve snuck some peas into her mac n’ cheese, you may be able to get her to dip a “tree” (broccoli) in the cheese sauce. Many kids are willing to try new foods if they can dip them into a favorite sauce such as ketchup, tahini, or salad dressing.  

• Try introducing a food that is similar to another food the child already eats, such as a different and healthier brand of frozen pizza or chicken nuggets. Remember, you may have to introduce the new food dozens of times. Change accepted foods slightly to present new textures, shapes, and colors. Break crackers into four pieces instead of two, cut bread into a funny shape. Experiment with food temperatures. A child might try frozen blueberries or snow peas for the novelty of it.
• Avoid empty calories. Don’t let your child fill up on high-sugar fruit juice during the day or snack on high-calorie junk foods like chips. Keep treat portions small. Rather than give a full bag of Veggie Booty (which doesn’t count as a vegetable), serve a small bowlful.
• Provide “oral comforts” that help normalize mouth sensation. These nonfood items are safe to suck and chew on and come in a variety of shapes and textures. Some favorites include: Chewy Tubes, Chew-Eaze, Dr. Bloom’s Chewable Jewels, and Kid’s Companion Jewelry. You can find these in most therapy catalogs and on the sensorysmarts.com website under Toys & Equipment/Oral Comforts. 

 Above all, avoid food battles. Mealtimes are social time, not therapy time. Serve food you know your child will eat when your family sits down for a meal and focus on having a pleasurable family experience.  

 You may need to work with a feeding specialist (usually an occupational therapist or speech language pathologist) especially if your child has significant oral sensory issues, oral motor weakness, muscle tone problems, or extreme reactions to food. The feeding therapist will evaluate your child’s issues and implement a therapeutic program with a home component. Also investigate supplements such as multivitamins and essential fatty acids to make sure your child is getting the nutrients he or she needs to stay healthy.  

 Find more on eating difficulties and other sensory challenges in Raising a Sensory Smart Child and at sensorysmarts.com. You may also want to check out these books: Just Take a Bite (by Lori Ernsperger, available in bookstores and online) and Happy Mealtimes with Happy Kids (by Melanie Potock, available at MyMunchBug.com).  

 Got a question? I’d love to hear from you. Please email questions to Lindsey@sensorysmarts.com.  

Boo Who?

Feeling the Halloween spirit today, and I was asking the kidlets what they wanted to “be” for Halloween.

What’s with the gore this year buddies? Call me overprotective, but I don’t think an 8 year-old should be Freddy Krueger. Isn’t there some rule about not dressing your children in costumes that would actually scare the mother? Thanks to the school no weapons or masks. Whew, got me out of that one. I’m drawing the line at skeletons, zombies, and vampires. . .take your pick.

Alex, on the other hand, didn’t know what he wants to be. I suspect he wants to be a Pokemon character, but it’s so hard for him to commit. I remember a few years ago taking him trick-or-treating. An innocent neighbor-warewolf child jumped out at him and nearly gave him a heart attack. That was pretty-much the end for him as far as walking around the neighborhood.

I see his point when you realize that no amount of candy is worth a kiddie heart attack. Especially when his mother (that would be me) will usually hand him chocolate upon request. Bless his little heart. . .attack. . .

 Anywho, I came accross this awesome article about Halloween and kids with autism. I wanted to share it with you. Thanks mucho to Autism Support Network.

http://www.autismsupportnetwork.com/news/halloween-children-autism-210012342

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