Hi everyone!!! We've had a rough few weeks at our house, so my posting has been sparse. I apologize for that. Here is a great little post from the Autism Speaks blog called "Athletes for Autism."
Blessings!
DC

Athletes for Autism! 

Monday, July 23, 2012 Autism Speaks

We would like to congratulate Ernie Els and Elliot Sadler, two incredible athletes who have made huge strides for the autism community by spreading awareness and raising funds for research and services!
On Sunday, golfer Ernie Els won his second British Open, the fourth major victory in his career.  Els' son  Ben has autism. The Els family established 'Els for Autism' in 2009, where they are committed to funding scientific research aimed at understanding Autism and developing knowledge-based treatments with the intention of finding a cure. They also fund Centers of Excellence which include all of the following; Educational programs for students age 3-21 years, A services component of doctors, speech therapists and other specialists, An on-site research center, A continuing services program for adults with Autism Spectrum Disorders. Find more about Els for Autism here! Els shared his story in a public service advertisement as part of Autism Speaks "Learn the Signs" Ad Council campaign. Watch the clip below:

  Also on Sunday, Elliott Sadler won the NASCAR Nationwide Series race at Chicagoland Speedway. The Hermie and Elliott Sadler Charitable Foundation is dedicated to raising autism awareness and promoting research for a cure while also supporting initiatives that improve educational opportunities for children and their families. The Foundation provides support to projects that share the ideals and concerns of the Sadler family. Find out more here!

Tantrum vs. Autism Meltdown

Hi everyone! I borrowed this from the Autisable weblog site. It is just too good not to share. Please take a look. This chart is fantastic in helping us understand our kids:

Blessings!
DC

An Important Message

Hello everyone! Well, my last post was pretty depressing, I know. Part of my sadness stemmed from hearing about a very well known and prominent rap artist, 50 Cent, making some pretty ugly remarks about people with autism and special needs. I didn't really want to get into it in my last post. I've been thinking so much about what to write and today I saw this video. It says everything I wanted to say, so I leave it here for you.

I could not have said it better myself! 50 Cent did more for autism awareness in one day than I honestly believe we were able to accomplish in the month of April. Let's work together and use our power in numbers to effect change in our communities!

Blessings!
DC

Heartbroken...

Hi everyone!

Today was a tough day. My grandmother was supposed to come visit... it was on our calendar and the little man was all excited. Yesterday she fell and broke her hip and needed to be hospitalized, meaning she will not be coming to visit after all. I had to tell him last night and he was SO upset when he saw me erasing "Abuelita" (meaning "Grammy" in Spanish) from his calendar. He was most upset that she had a "boo boo on the leg" (his words). I told him that the doctors were going to help her get all better and that she would get a BIG band-aid. Last night he couldn't sleep because he was crying and asking questions about Abuelita's "boo boo." "Is her boo boo on the leg very red, Mommy?" He was asking if her injury was bleeding? Who says kids with ASD lack total empathy???

I think I was more upset about this event that I realized, or maybe I was caught unprepared when I was slapped in the face with seeing my little man outright socially rejected by some kids. This was not the first. The most egregious happened about a week ago, but a series of events today led me to write the following posts/comments in various social network websites. I am heartbroken for my son... I know it's only the beginning of a life-long battle of social injustice based on his "differences." I guess I expect this type of rejection from just anyone off the street, but it certainly hurts beyond measure when it's from members of OUR OWN CHURCH!! I'll let my posts do the rest of the talking:

"I am having a BAD day, folks, so don't get me going! No, your child doesn't have to like my child... nor do they have to play with mine... but it sure wouldn't kill you to teach them to be NICE to my son!!!!!!!!!!!!!!!!!!!!!!!!! 

You see, I expect rejection from some, but this one hit really hard and deep. I wish these were strangers, but they are not. These are people who have known us for years, even before the little man's diagnosis. That's why I say they don't have to LIKE him, but it wouldn't kill them to be nice. Excluding him on purpose and pushing him away from playing with other kids... NO EXCUSE!!!

I believe that it's human nature to shun anyone who seems different. In nature, it's a basic instinct that every species avoids that which is different. We avoid what is different because it seems foreign to us and, therefore, can cause fear and uncertainty. As humans we are born with the cognitive capacity to over-ride this instinct and as parents it's our responsibility to show our children how to be accepting of people's differences. Babies learn through exposure and observation since they behave by imitation. For example: a child born to a home with a dog would not think twice about approaching another dog because dogs are familiar. However, a child who has never been exposed to a dog will fear them. We've all read about 'the boy raised by wolves'...not scared of wolves but terrified of humans because of the environment in which he was born AND the modeling he observed from his pack.

It takes effort, guidance and constant MODELING for children to "get it." Kids learn from what they see: anything from intolerance, violence, cruelty and even racism...but also kindness, love and acceptance. This makes talking the talk just as important as walking the walk. You can tell them what to do a million times but if you don't walk the walk, everyone will see it through your children. Mark my words! Your little ones only show the world what they really see at home...

Then there's the issue of temperament. It is interesting how in the same family one child can be so mean and awful yet the sibling is the exact opposite. I guess the younger one has learned to be kind and tolerant because the older one is so intolerant and cruel. Still, as a parent your responsibility is to guide and discipline when that temperament affects others. Like I said, we're not asking for your child to LIKE our son, but it certainly is YOUR responsibility to teach them that encouraging others to exclude those who are different is cruel and unacceptable...and that is on YOU!"

I'm nursing a broken heart today, but I'll be OK. The little man is already over it. He is such an amazing soul!!! My son may have ASD but he's one of the kindest-hearted and most forgiving people on this planet! I need to relish in his kindness and love knowing I'm doing all that I can... even if those who "should" be kind and loving are NOT! I WILL BE OK because I am more than a conqueror through Jesus Christ! Just like Abuelita's "boo boo" will be "all better," my heart's "boo boo" will also be "all better." You see, the minute my husband walked in the door from work today, the little man jumped in his arms and said, "Papa, I am SO happy!" 

That's my boy!!!

Blessings!

DC

But, Lord, I'm Not Good at Baseball!

So much has happened in the past month it's really overwhelming:
1. I managed to survive another school year with a full caseload and all my paperwork done ahead of time! Praise God!!!!
2. Our little man finished his first full year in preschool having made 2 really good friends.
3. I was awarded a Certificate of Appreciation from the New England Occupational Therapy Educator's Council-- and got to receive it with my best friend, and my "ASD-mom-mentor-colleague," both in the audience! What a blessing!
4. The little man passed his first level swim class (I mentioned that in my last post)-- in a class for TYPICAL kids!!!
5. The little man was invited to THREE birthday parties from his classmates at school!!!

The list keeps on going...but life is not all about awards and successes. Being out of school and home for one straight week has NOT been easy for my little guy. First we found out that his two really good friends will not be in his class next year. I am heartbroken. That same day I injured my back keeping the little man safe during a major meltdown at one of the birthday parties. So when school got out I wasn't up to my spunky "OT mom" self. Because I slacked off, he has regressed in some of his skills.  At one point this week he even said to me, "Mommy, I no like cay-cayshon (vacation)... I want school!" I know he misses the structure and he misses his friends. In my world of public education, most folks count down the days until the end of school...meanwhile in my world of parenting a child with ASD, most folks count the minutes until the return of school. I think this is much more of an issue with kids with ASD than kids with any other type of disability because of the nature of the disorder.

You see, a child or individual with ASD lacks that internal sense of organization; it's part of the neurobiology of autism spectrum disorders. Many lack body awareness due to sensory issues and feel "lost in space." Others, due to their cognitive profile, lack awareness of order/sequence and time (spatial-temporal awareness) and feel "lost in time." For that reason, they depend and rely on external structures like their daily routines. This is believed to be the underlying cause of repetitive and ritualistic behaviors. By doing things the same way over and over, they are trying to get a sense of control over their world that feels completely out of control. It's their way to feel safe. It's been explained to me that without external routines and structures they feel like they are on a free-fall and it is TERRIFYING... hence the increase in the "unusual" ritualistic and repetitive behaviors when things are out of the usual routine. That is why it is so crucial to preview and review any changes to these kids' schedules BEFORE and AS things happen!!!

Here's where baseball comes in: these kids are like a baseball player who is up at bat and just keeps getting tossed one curve ball after another. I can only imagine that after a while, one would just want to throw the bat and scream, "I QUIT!!!" Well, I can say pretty much the same for parenting a child or individual with ASD. Just when you think you've figured things out, ZOOM!, comes the curve ball out of nowhere and you strike out. The thing is we can't say "I QUIT!" Quitting is not an option. I remember when things got the worst with our little man last year... I would cry and sound like I had multiple personalities by saying, "Can't I just put him in a box that says 'up for grabs' and leave him on the side of the road somewhere?" and without even taking a new breath, I'd answer myself, "NOOO!!! Because no one will love him and care for him like I will!" And that's just it: we may want to give up, but we know we are the BEST thing in their lives... we are their mommy/daddy and nothing can change that!

Time passes...
Things start going well again and you think, "I got this!"
You're standing at home plate facing that pitcher again feeling a false sense of confidence because you think you've got it all figured out.
Then curve ball after curve ball (in different directions and at different speeds) you strike out... swinging!
It's not like you weren't trying!
You're exhausted and you feel like a failure.
This time you don't even have the strength to walk away from home plate, much less carry your bat with you.
You just look up and through the tears you yell, "God, I know you know all things and I trust in your promises... But, Lord, I'm just not good at baseball!"

That's when the Holy Spirit steps in and picks up the bat and says, "I got this!" He gently guides your hands... He'll do the work, but you have to do your part, you have to give up control. He's holding you and showing you the way... don't try fighting Him or think you are going to show Him how it's done!

The first pitch is one of those dreaded curve balls.
You cringe and close your eyes... you just can't bear to watch yourself fail again.
Then you feel the swing and you hear, "SLAM!"
You've hit the ball right out of the park!!!
You stand in awe and complete disbelief of what just happened and then another reality hits you:
NOW you have to RUN the bases?!?!?!?
You were worn out even before you picked up the bat!!!
And that's when Jesus steps in and says, "I got this!"
When you think you're toast, He will carry you... the whole way home!
That's why He died for us!

Just like for our kids, giving up control feels like a terrifying free-fall, but it's not. It's a giant leap of faith knowing the Father, the Son and the Holy Spirit are holding us the whole way!

"Being confident of this, that He who began a good work in you will carry it to completion." Philippians 1:6 (NIV)

Blessings!
DC