New, Disturbing Stats About Autism

The Centers for Disease Control have released new data about autism in the United States. Now 1 in 68 children are on the autism spectrum and 1 in 42 of them are boys! This is alarming to me on several accounts, but here are two in particular: #1- My children are at the age where they ARE or WILL BE starting families of their own. For obvious reasons, just the idea that my children could have to raise a child on the spectrum sends me right over the edge.  #2- I am nearly 50 years old and still caring for my son with autism, something Rep. Chris Smith from New Jersey addressed to the House of Representatives back in 2011. He said, "As aging parents can no longer take care of their children and are worried they don't have that many years left on earth, they are frightened about what happens to their beloved child, we need the aging out issue to be addressed and we need it now." 
(Please read  I May Never Be an Empty Nester to learn more about how I feel regarding this issue.)

I don't know what the answer is to this growing health crisis, but I do know that I can help by raising awareness. April is Autism Awareness Month and April 2, is Light It Up Blue. There are a couple of simple ways you can help. Make a donation to Autism Speaks and/or purchase blue light bulbs from your local Home Depot or hardware store and light up your home this coming Wednesday. Let's all be proactive in this fight against autism.

Getting It Twisted - A Little Marijuana Humor

Keep in mind that Cody enjoys listening in on other people's conversations as I share some casual dialogue between Don and I over breakfast this morning.

Me- "What are your plans today?"

Don- "I need to burn that pile of weeds in the backyard, but I don't really want to smell like smoke."

At this point, I headed into the bedroom to finish getting ready for work when I heard Cody ask Don...

"How come you're smoking weed in the backyard dad?"

Why Parents Blog About Their Special Needs Child

I want to share an article I came across written by Leigh Merryday, a mother of a special needs child. Please click on the link below...

I May Be Oversharing About My Special Needs Child and That's Okay

Damn Straight!

Source: google.com via Jenna on Pinterest

Click "I Can Relate!" if you speak autism too.

Raising Angels

The similarities between this girl's story and mine are amazing. Please watch the short video. (You may want to grab a tissue.)

"Some people come into our lives, leave footprints on

our hearts and we are never the same."      Flavia Weedn

Deficits in Social Skills

Parents who have children with special needs become accustomed to people staring at their kids. We become accustomed to staring, but that doesn't mean we are okay with it.

One time, when Cody was young enough that he sat in a stroller, we were in a department store and a young boy followed us around, gawking at Cody. We had no clue where his mother was, but evidently she was not keeping an eye on her obnoxiously curious son.

Somewhere in the infant department, Don lost all composure. He told the boy there was a booger hanging out of his nose and that sent the kid running.

I tell you this story, not because it's something I am proud of  (though Don will tell you it was one of his best moments), but to give you a glimpse of what it's like every. single. time. we take Cody out in public. There are times when it can be painfully heartbreaking.

While I was scanning through Autism boards on Pinterest last week, I came across the following pin...

Source: etsy.com via DeeAnn on Pinterest

I showed it to Don, mentioning that I would like to have this quote printed on a t-shirt and he said, "Hell, can I get it printed on a tie and wear it to church?" 

Sadly, Don is right. We can't get away from ill-mannered people, even while we worship.

Cody's Not So Fast Food

A couple of nights ago, Cody found his Walkie Talkies and asked his dad to play with him. Since Don was heading out the back door anyway, he agreed.

(Before reading any further, if you haven't already read my post  If Cody Won a Years Supply of Ice Cream , you'll want to do so now.)

This time, the conversation between Cody and his dad went like this...

Ring, ring...

Cody- "Hello?"

Don- "Oh hi! I'll have two tacos and some..uh...what do you call them?...cinnamon sticks?"

Cody- "10-4"

Don- "When will my order be ready?"

Cody- "10-4"

Don- "WHEN will my order be ready?"

Cody- "Soon."

Don- "What's soon? Two minutes? Five minutes? Ten minutes?"

Cody- "Tomorrow."

Daylight Savings and Autism Do Not Mesh

There is no way in hell that whoever came up with Daylight Savings Time had a kid with autism. No way! 

Cody got a Talking Atomic Watch for Christmas and Don and I have been trying to set it ahead an hour without success. Don even broke out the instruction pamphlet and read it and everybody on this planet knows men would rather not have to read (or ask for) directions.

Do you realize what Cody's talking watch being incorrect means to those around him? It means that we have listened to Cody grunch and worry since early Sunday morning. (And yes, grunch is a word at our house.)

If we do not get the correct time on his watch by the end of the evening, I am going to take a hammer to it, order Cody a new one and have him keep popping Prilosec for his ulcer until it comes in the mail.




Now you all know how I feel about Daylight Savings Time...and Talking Atomic Watches.

Special Bond Between a Rescue Dog and Dying Boy

Don called me from work this morning to tell me of a touching story he read on MSN about a little boy who is dying and a rescue dog. "You've got to post this story on your blog" he said. 

I turned on my computer, pulled up MSN's homepage and read the article. Don is right. It's a sweet story that will tug on your heartstrings and I want to share it with my readers.

Here is the link...

Lucas and Juno: Special bond of a rescue dog and dying boy

One Autistic Girl's Amazing Story

My friend at The Fragile X Files posted an amazing clip about an autistic girl's breakthrough. Much like Temple Grandin, this child is helping us understand autism. Please click on the link, watch the video and prepare to be enlightened. I promise, you will be glad that you did.

The Fragile X Files: Thanks to Carly Fleischmann: If you haven't heard of Carly Fleischmann, let me introduce you. Watch this video. It's almost 10 minutes long and usually I hate videos (...

How DO Grandparents of ASD Children Feel?

I had an aha moment after reading one particular paragraph in the article I posted yesterday. It read...

"Researchers explain that grandparents often feel added frustration when coping with a grandchild with autism because they empathize with their own child as well as their grandchild and are concerned about the well-being of both."

Never had it occurred to me that my own mother may feel this way, but it makes perfect sense.

My grandmother use to tell me that you never stop worrying about your children, no matter how old they get, and now that my own children are adults, I completely understand what she was talking about. It's easy to imagine how I would feel if one of my sons or daughter had a child with special needs.

Looking further into this issue, I found a research report written last April by Connie Anderson Ph. D. for the Interactive Autism Network.  I want to share with you the following pie chart from that study. The data shows how much grandparents of children with ASD worry about their adult child:


                  If you'd like to read the article in it's entirety, chick here.


Now that I am enlightened to the issue, I am going to put my own mother on the spot and ask her if she will write a post for me. I'd like her to share some of her thoughts and feelings about being a mom to a daughter who has a child with autism.

We all have so much to learn from each other and I welcome your comments on the subject.

Kind Words from Cody's Day Program...

"No act of kindness, however small, is ever wasted."

Aesop

The Right Things to Say to Parents of Special Needs Kids

Mark and Bonnie's blog, The Fragile X Files, is one of my favorites. When I read their post, The RIGHT Things to Say to Parents of Special Needs Kids, I knew I had to share. I hope you will click on the link and take a minute to read it.

Road Trippin' Part Two

After Don, Cody and I left Zion National Park, we drove to a nearby ghost town named Grafton.

As you can see in the photo below, unless a person is aware of Grafton and specifically looking for the turn off, the sign would be easy to miss.

Soon after turning onto the side road, we crossed over this historic single-track iron bridge.

Then we spotted a much older sign, half hidden amid the tall grass.

We had to drive passed multiple security cameras, but finally came upon the completely fenced in ghost town. Just inside the gate, was an information plaque.

There was also a box to donate money for preservation, if so desired.

 In this picture, Don is trying to help Cody drop a dollar in the donation box. You can see that Cody is grumpy because we made him get out of the car.

This is the old school/ church that has been restored.

Cody is forcing a smile and I am nervous thanks to 
a huge lizard lurking around the step.

This photo, taken inside Grafton, is looking east toward Zion National Park.

After we left Grafton, we visited the town's graveyard. I will post more about our experience there in Road Trippin' Part Three.

Road Trippin' Part One

Feeling a bit stir crazy over the week-end, Don, Cody and I took off in our 2012 Nissan Altima (see this post)...

and did a little sight seeing. Well, that's not exactly true. Don and I went sight seeing. Cody went sight listening (an oxymoron of sorts).

Cody is a great traveller, as long as the radio is tuned into a classic rock station and we don't make him get out of the car.

We went to Zion National Park. If you have never been there, you must put it on your bucket list. Zion National Park is in southern Utah, approximately 85 miles from the north rim of the Grand Canyon, 157 miles from Las Vegas and 115 miles from Lake Powell.

The weather was warm and beautiful (high 80's) and, with the exception of Cody grumbling when we made him get out of the car, it was an enjoyable drive.

Below are a few of the pictures we snapped...


Check out the heart shaped cloud, captured completely by accident.

Zion has two tunnels. This is the entrance to the small tunnel.

Inside the small tunnel.

Inside this rock mountain is a 1.1 mile long tunnel.
You can see one of the windows about mid photo.

Here is a zoomed in shot of the window.

This is the entrance to the mile long tunnel. It was Cody's favorite part of the trip. He insisted on riding with his window down so he could hear the echo.

After we left the park, we drove to a ghost town of sorts, but you're going to have to wait and read about that in Road Trippin' Part Two. :)

If you want to know more about Zion National Park, click here. If you would like to see gorgeous, breathtaking photos of the park, do a google image search. You won't be disappointed.

Due Process Hearings (Reposted)

Beginning a new school year can be stressful for students and parents alike, but if you have a child with special needs, you may be dealing with issues that seem overwhelming and frustrating at best.

For this reason, I decided now would be a good time to link you to my post Due Process Hearings from the 2010 archive.

Hopefully your school district will work with you to create a positive educational experience for your child. However, it is nice to know there are options and a world wide network of parents who are willing to support and help in any way they can.

Deciphering Cody Jargon

Parents of children with ASD become very good at solving puzzles and interpreting conversations, whether we like it or not. In fact, I wonder if anyone has ever done a study to see if parents of autistic kids get Alzheimer's? I bet the numbers would be extremely low, due to the fact that our brains are working puzzles ALL THE DAMN TIME. Allow me to enlighten you.

Below are a few examples of my son's, shall we say, inarticulate sentences:

Cody said, "We can do double A after TURN."

What he really meant was... I want to listen to my iPod when I get home from TURN (his day program).

Get it? Double A = AA = AA batteries and iPods need to be charged! (If I was on Jeopardy and there was a category for crap brainteasers like this, I'd kick ass.)


Cody said, "That was the slowest girl I've ever heard."

What he meant was... That girl talked really slow.


Cody said, "I see what I was thinkin'. Do people see what they think?"

What he really meant...Oh! I get it.


Cody said, "I wish I could, but I don't have any money."

What he's trying to say, in a polite way is... NO! Now shut up about it and leave me alone.


and, my personal favorite ( He honestly said this. I can't make this stuff up.)...


"You smell like a bird dad. The kind you step on."


What he meant...You smell like bird sh#t dad."

I'm Just His Mom. What the Hell Do I Know?

As you read this post, keep in the back of your mind that Cody hates being outdoors. He also loathes flies and bees and doesn't care much for dogs or cats either.

Katelyn spotted a frog on the sidewalk the other night so she popped her head in the door to notify us. As Don and I headed outside, Cody jumped up from his chair and wanted to come. That alone is extremely out of character for Cody, but what he did next was even more unusual.


Don, forever trying to get Cody out of his comfort zone, said to him, "There's a frog out here Code. Do you want to hold it?"

Then..., you guessed it, Cody surprised us all and answered "Yes!"

Check out these photos...

It was cute. We had to keep reminding Cody not to squeeze the little amphibian, but he thoroughly enjoyed holding it.


Just when I think I'm an expert at figuring Cody out, he goes and does something like this to prove that I really know nothing at all about what goes on in that head of his.

Autism and Multiple Sclerosis/ Could There Be a Link?

I stumbled across the following article by Sara Lapinski and was completely taken aback. Because my husband has MS and we have a son with autism, I really want to do my part in getting this information out there.

There was no blogger icon, but I've included the link http://www.ageofautism.com . It's a rather lengthy post, but well worth the read.

Child with Autism and Mom with Multiple Sclerosis


Does your child have autism? Do you have MS? No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS. I can’t find anyone who is looking into this….why? Why can’t we find information about the link between the two anywhere?

Let me take a step back. For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms. I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today. I was told many interesting things by doctors, but most settled on me having an anxiety disorder.

I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”. So I talked myself into being very stressed out, and felt my dizziness was because I was anxious.

Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis. I knew right away what this meant, and headed back to the neurologist. I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words. He said, “Everyone slurs their words, I slur my words all the time. Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.” He agreed to do a second MRI, just to be safe.

About an hour after doing my second MRI, I am in the waiting room. The doctor comes out and signals me to come back. He says, “Well you do have MS, I can’t believe it, I really was not expecting this.”

Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son. You see, my son was not developing typically. We started early intervention at 10 months of age because my husband and I were noticing some subtle delays. As a first time mom, I just had the feeling something was wrong. At 12 months of age, I started questioning doctors about autism. My little guy just didn’t’ seem like the other kids his age. I had read some articles on red flag signs and, when I did, I felt so scared inside. It sounded just like my baby. The doctors and professionals reassured me “he is fine”. “He just has a little delay”. “He is a boy, you are a nervous first time mom, and you need to relax”. These are just a few of the many things I heard.

Every six months we went back and back. “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me. When my little guy was 3 ½, I took him back again. At this point his speech was completely repetitive and his behavior was spiraling downward. The doctor observed my son for 10 minutes before giving him a diagnosis of autism. I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”

One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not. Actually I feel fortunate. I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis. Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy. He has worked so very hard, and I am so very grateful for where he is today. Could he possibly be farther along had he been qualified earlier for behavioral interventions? Possibly, but he did very well with the services we had.

What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS. Why when I tell my child’s specialist for autism that I have MS does he say to me, “I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism? Why isn’t the relationship of the two disabilities being tracked? Why can’t I find any research on the correlation between MS and Autism? Will one of them give us answers to the other? Can MS treatments help autism or vice versa? Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis? How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold?

Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism? Do we have to be told we don’t know what we are talking about, to find out later we were right?

I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”. Please help parents in my situation be part of the cure.


Sarah Westerfield Lapinski

God Sent to Me an Angel

God sent to me an angel,

it had a broken wing.

I bent my head and wondered

“How could God do such a thing?”

When I asked the Father

why He sent this child to me,

the answer was forthcoming,

He said “Listen and you’ll see.”

“My children are all precious,

and none is like the rest.

Each one to me is special,

and the least is as the best.

I send each one from Heaven

and I place him in the care

of those who know my mercy,

those with love to spare.

Sometimes I take them back again.

Sometimes I let them stay.

No matter what may happen

I am never far away.

So if you find an angel

and you don’t know what to do,

remember, I am with you,

love is all I ask of you.”

by- Paul Dammann