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"For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil,
to give you a future and a hope." Jeremiah 29:11 (NKJV)

Sharing resources, research, ideas, inspiring scripture, success stories and even failures...

Thursday, June 28, 2012

WATER SAFETY!!!!!!!!

Hi everyone-

So, this is my new "schtick," but for extremely good reasons. Water safety... sounds pretty universal for all children, right? Well, it's totally different when it comes to individuals with ASD. I'm not sure how I got into all of this... I believe in my heart that God brought this to my attention for a reason. I believe He wants me to pass this information on to everyone who will listen. IT'S TIME TO LISTEN!!!!

It's no secret that Nathan loves the water. Well, not long ago I felt in my heart that Nathan needed to spend more time around other children his age, not in artificially created scenarios with a safe adult at home. He was ready! So, we ended all home behavior therapy (yikes!). Instead, we began adapted gymnastics classes (I highly recommend this place, Flips and Giggles http://www.flipsandgiggles.com/) and swim classes at the Boston University pool. Next to the decision to switch his daycare provider soon after his diagnosis, THIS has been the best decision we've made about Nathan's care!

Well, this week Nathan passed his first level swim class... in a regular non-adapted swim class with neurotypical kids!!!!!! I honestly can't express enough how God is always present in our walk on this journey. "Coincidentally" our swim teacher "happened" to have a younger brother with autism!!! Now, we had not told anyone Nathan was on the autism spectrum! Can you believe that?!?!?! God is SO GOOD! Well, here is Nathan's certificate for completing his class:

Interestingly, right around this same time, there was a huge campaign by the company Sevenly (http://sevenly.org/causes) to raise money for The National Autism Association (http://nationalautismassociation.org/). Well, the main fundraising cause was to fund NAA's "Big Red Safety Box." This is a special kit created for families of individuals with ASD:
As I looked into the NAA and The Big Red Safety Box campaign, I learned that accidental drowning is one of the top causes of death for individuals with ASD. NAA is so serious about this campaign that they have created a website JUST for safety information. I highly recommend that EVERYONE with a loved one with ASD go to this website to learn more: http://awaare.org/

So, now our "recreational" activity of swimming class for Nathan has turned into a life-saving endeavor for him. PLEASE, PLEASE, PLEASE, visit this website (http://awaare.org/) to get the information you need to be prepared. If you are still feeling "iffy" about it, watch this video and see the path that the child takes: right over a small bridge over the water:



Still not convinced? Read the following stories. Check the dates of the news stories of the actual cases... all in just the month of June 2012!!!
http://www.autisable.com/764691935/pool-safety-/?cuttag=true
http://www.autismkey.com/tag/autism-drowning-statistics/
http://www.kpho.com/story/17395955/drowning-risk-higher-for-autistic-children
http://www.dailymail.co.uk/news/article-2122545/Autistic-boy-drowns-pond-7-months-twin-brother-dies-way.html
http://bradenton.wtsp.com/news/news/125494-child-drowns-bradenton-retention-pond
http://www.chicagotribune.com/news/local/suburbs/glenview/ct-met-glenview-drowning-family-0621-20120621,0,5581530.story
http://millbrae.patch.com/articles/neighborhood-mourns-loss-of-girl-who-drowned-in-san-mateo-lagoon-f3b9bca9
http://abclocal.go.com/ktrk/story?section=news/local&id=8711377

Are you listening now??? Please visit the websites for your local YMCA or local colleges to see if they offer swim classes. You can also check through your local Red Cross association.

Blessings!
DC

P.S. Here is my awesome Sevenly shirt for the NAA cause. I love it!!!

Thursday, June 21, 2012

BBC's "My Autism and Me"

Hi everyone! This video is a MUST SEE and a MUST SHARE!!!! One of my friends shared it with me on Facebook and I wanted to share it with all of you. It's made by the BBC from the UK. It is incredibly well made! Please take a few minutes to watch it. It was so informative and so wonderful to hear it right from the perspective of the individuals themselves. A true insight into the minds and lives of our loved ones with ASD.

Blessings!
DC

Monday, June 18, 2012

From Autisable: Autism's Effect On Marriages

Hi everyone-
Here is a nice little post written on Autisable. What I wanted to highlight was the information in relation to statistics on divorce in families of children with special needs. The author's life journey may be a bit different from many of ours, but I'm sure we can all relate to many aspects of her story. Bottom line: just because you have a child with special needs does NOT make the chances of divorce that much higher. Something I was certainly glad to read.
Blessings!
DC

Autism's Effect On Marriages

Saturday, 16 June 2012



When asked “which do you want first, the good news or the bad news?” I always choose the bad news first. I guess I always want to get the worst part over with and then start focusing on the positives. Which is why I’ll start this post with the negatives of marriage, namely the divorce rates. When searching the internet for statistics I found that the general divorce rate in the US is approximately 50%. While these are striking numbers, I’m sure they’re not far from the statistics in most western countries. For years, rumors of even higher divorce rates of parents of autistic children have circulated where numbers as high as 80% have been frequently mentioned. Not an encouraging thought and I could not help but wonder: is this really true?

Well, after a considerable amount of time spent online, it seems that the overall consensus is that these numbers are highly exaggerated. Contrary to the rumors, studies show that divorce rates among parents of disabled children are very close to those of parents of typically developing children. However, the risk still remains higher due to another reason; a prolonged risk.

Here is a nice part of an article from Journal Sentinel’s website that explains this well: “Both groups started out with high rates of divorce when children were young, likely because the day-to-day child-care duties exact a heavy toll on marriages. But once children without disabilities grow up, their parents get over the rough patch and start to enjoy their empty nest” [said Sigan Hartley, clinical psychologist at UW's Waisman Center, and a team leader for a research aimed to find out whether parents of children who have autism spectrum disorder split up more than parents of children without disabilities]. “If parents can really survive the first years of marriage when their children are young, their likelihood of divorce steadily declined until, in our sample, virtually no risk by the time a son or daughter was 30″, Hartley said. By contrast, parents dealing with autism continued to have a high divorce rate as their children entered adolescence and adulthood. It’s not clear why divorce rates remained high for parents of teenagers and adults with autism. But the group has some theories. ”For these parents, they don’t get the typical experience of the son or daughter gaining the same level of independence, there’s still a high demand for day-to-day responsibilities,” she said.

For me, despite the higher prolonged risk of divorce, it is still encouraging to hear that the fearsome numbers of 80% do not seem to be true. So now I’m going to turn the matter upside down. Despite the high divorce rates, the chances of parents of autistic children staying together is still substantial and that’s what I want to focus on. I want to do everything in my power to keep my own marriage strong. I have trouble seeing myself dealing with everything regarding the boys alone, without my husband in the picture. I would feel completely lost without him. I’m sure I could survive (don’t we always?), but everything would be twice as difficult. Not that the struggles are so overwhelming but rather the fact that you do not have someone to back you up, to take over and give you a minutes rest once in a while. That you do not have someone there at all times to provide you with support and encouragement when you are feeling down is a scary thought. And it makes me all the more appreciative of my husband.

In fact, the reason why I’m talking about all this is because today is our two year wedding anniversary. We’ve been together for almost 9 years and experienced loads of things during that time. Both our boys were born before we got married and there were many challenges on the way, the biggest one undoubtedly when Jon Agust, our older son, was born 6 weeks prematurely. 2 years later, Viktor became part of the family photo. We always stuck together and pulled through the hard times while enjoying the good times. And for some reason, I always thought that after getting married, things wouldn’t exactly change but that we were probably over the roughest part of our relationship. I wasn’t quite right. Things have been eventful to say the least, since we got married.

Two months after our wedding, we left our comfort zone and moved to Denmark to start our graduate studies. It was very exciting but also difficult and it took about a year for us to reach a level of comfort. Last summer we were in great spirits, truly looking forward to the coming winter. We thought things would only get better. And then, in September last year, came the blow. To our complete surprise, Jon Agust was diagnosed with autism. It was a tremendous shock and our immediate reaction was unwillingness to admit it to be true. We started to read up on the topic which, to our horror, only led to the realization that not only was Jon Agust autistic but almost certainly Viktor as well. We were devastated. Ever since, we’ve been dealing with this new reality, trying our best to accept what is. A dark period of low spirits followed this realization and while we’ve tried to support each other through it all, we’ve been dealing with things in our own separate ways. It has most certainly been the most difficult thing we’ve experienced, having our sons diagnosed with autism.

We are slowly emerging out of the haze. We’ve pulled through and tried our best to stay strong, if not for ourselves, then for each other. It hasn’t been easy but isn’t that exactly what marriage is all about; staying together through thick AND thin? I feel we’ve been experiencing the thin part of late. And still, we’ve managed to stay strong as a couple and be there for each other. As I am his, he is my rock. For that I will always be thankful. And my love for my husband is unwavering. Happy anniversary honey!

Read Original Post

Wednesday, June 13, 2012

MY APOLOGIES!!!!!!!!!!!

Hello everyone! I need to apologize to all of my blog readers and subscribers who follow my blog by email.

My last post was a re-post from the Autism Speaks blog where they printed a letter written by a wonderful parent of a child with ASD. The letter was read outloud by Geri Dawson, Ph.D., Chief Science Officer of Autism Speaks at a reception at IMFAR.

In my post I included a copy of a picture that was posted on the Autism Speaks blog showing Dr. Dawson reading the letter. What I need to apologize for is the fact that in the background of that picture is a portrait of a nude woman and I didn't realize it until after I posted the picture here. I have since deleted the picture, but in case you received the original via email, please excuse my oversight. I will be much more careful in the future.

I know to some people it may not be a big deal, but it totally goes against what I stand for and it is a terrible distraction from the actual purpose of my blog. I truly hope no one was offended and that you will continue to follow this blog. I'm so glad you're here!!!

Blessings!
DC
Hi all! I just read this on the Autism Speaks blog. It's so beautiful I wanted to share!
Blessings!
DC

Weatherstone-Vance Inspires Our Weatherstone Fellows 

Friday, May 18, 2012
Autism Speaks Chief Science Officer Geri Dawson, Ph.D., read the following letter of inspiration from Cheryl Weatherstone-Vance at a reception for the third class of Autism Speaks Dennis Weatherstone Predoctoral Fellows, at the International Meeting for Autism Research (IMFAR) in Toronto on May 16, 2012. 

Thank you all for attending this very special event. When I was approached to address you I thought, I better get my speech writing up to speed. I was thinking about what to say and how to formally address you. I tried several approaches, but frankly I found my address so boring it almost put me to sleep. I decided to be true to myself and just talk from the heart. So relax my friends, I can’t quote you any more statistics than you already know. I am trying to muddle through life and what the future holds for my son. My son’s name is Hunter and he is considered essentially non-verbal. So it is for him and all the other children with autism and their families that bring me to speak with you today. Simply put, I am a Mom who is fighting at your side to find answers to the mysteries of autism.

For those who don’t know me, my name is Cheryl Weatherstone-Vance and I am the daughter of the late Sir Dennis Weatherstone for whom your scholarships were named. Earlier I mentioned that I am a fighter, and actually, I literally am a fighter. Currently I am a 4th Degree Black Belt in taekwondo and will compete this June at the world championships.

Before my father passed away we often talked about the things that were important to me. The everyday struggles of raising a son with autism and my chosen sport of taekwondo often came up. I remember crying and saying that I would give up any gold medal in taekwondo just to hear my son say “I love you.” He replied, “If you had to pick one I have no doubt you would choose Hunter to recover.” I took a deep breath and smiled, but to my surprise he wasn’t done. He secretly knew something that I didn’t. He then looked deeper in thought and continued. “You don’t have to pick one. Do both!  Win at both! You know how to fight and win. Win in the ring and win with Hunter. There are people out there that will find their way to the same cause. They are fighters like you.”

In 2007 my parents witnessed me win my first world title in taekwondo and I gave the gold medal to them right off of the podium. The next year my father’s cancer took a turn for the worse. Before he passed away he told me he would be watching me from what he called “the best seat in the house.”   He died a week before world championships. Everyone would have understood if I would have dropped out of world finals but it is not in my nature to back down or give up. When the dust settled in 2008 I had won two more gold medals and by 2011 I had a record of twelve.

I am using that same determination to join with you and fight autism. You are an elite team and your journey has taken you here to this moment. To me, you are very much like the superheroes I saw in the movie called “The Avengers” last week. It is about people with special talents who become united to fight an oncoming invasion force ready to take over the world. The heroes are Hawkeye, Thor, Captain America, Black Widow, Iron Man, and the Incredible Hulk. Sometimes they don’t agree but they come together to fight a common enemy. In the end, they find that together they are much stronger than individually. To me, each of you is very much like a superhero with the power to change the world and together anything is possible.

In closing I wanted to say thank you to you all for choosing this as your field of research and dedicating yourself to finding the answers to the mysteries of autism. When I receive updates from Autism Speaks about the progress you have made it gives me great hope and I know what my father said was right. Like the super heroes from the Avengers you make a great team and have incredible gifts to offer the world. And you are fighters just like me!  Personally, I think autism picked the wrong team to mess with. Again, thank you and be inspired to keep fighting because the story gets better. In 2011 my son finally did say “I love you” for the first time. With your continued research one day I am hoping he will be able to meet you and thank you himself.

http://www.autismspeaks.org/blog/2012/05/18/weatherstone-vance-inspires-our-weatherstone-fellows

Monday, June 11, 2012

The Forever Diaper Bag-- Repost from Autism Support Network

Hi everyone!!! I have some great things to share with all of you in the next few weeks. I haven't written in quite some time because it's the end of the school year and I am just exhausted!!!

Today I read something on the Autism Support Network that I'd read a while back (way before I even thought of starting this blog). I find it so incredibly accurate in describing our lives as parents/caregivers of kids with ASD. It's interesting because I just watched the movie Autistic-Like: Graham's Story again yesterday (one of my favorites, a MUST SEE! http://www.autisticlike.com/). One of the lines in this movie that hits home the most with me is when Graham's mom, Jenny, says she can't just sit and chat with the other moms at the playground because to her it's critical to facilitate every single social interaction. She describes each of these instances as her "need to save his life." Now, add in heupelmom's description of "The Forever Diaper Bag" and it pretty much sums up our lives. A few posts ago I stated that I'd had to step in and say to a family of a child with ASD that "Parents of kids with ASD have a higher calling. Yes, we DO have to do more than other parents and we DO have to work harder. It's hard but it's just the way it is and we have to step up!" It's nice to hear Graham's parents and read how heupelmom's words totally encompass what I meant.

Luckily for me, I can rely and count on Jesus' words when He said, "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 NIV 
I hope you will also find rest in His arms. 
Here is the repost:

The Forever Diaper Bag

By heupelmom in The Autism Rollercoaster on Tuesday, June 15, 2010 6:28 PM

Sometimes I feel like Autism is like a diaper bag that you never get to get rid of.  It is always there.  
 
- You always have to think about how your kiddos will react to a situation before you take them there.
- Make sure you get the vacuuming done while the kids are at school because the noise bothers them.
- Make sure you put the next days' schedule up on the schedule board so it is there when they wake up.
- Explain to the other moms at the gymnastics place why your 4 year old isn't potty trained yet and why he has to turn the lights off and then back on when it is time to leave.
- Have extra meetings with teachers.  Some will understand and some you will have to fight tooth and nail to get the bare minimum of what your child needs.
- Always remember to have drinks and snacks and the required CD for the car to ease transitions.
- Know all of the right brands of foods and where you can get them and don't ever run out or risk your child not eating.
- Figure out whether an issue is behavioral, sensory or autism related and then try 1000 things to try to fix it.
- Worry about when they get invited to birthday parties and worry when they don't get invited to birthday parties.
- Arrange countless therapy appointments and then provide transportation.
- Try to get into their heads to figure out what is in their minds and help them try to express themselves.
- Never ever stop worrying because you know that everything in this difficult world is always just a bit harder on your child.

I sometimes get angry because the mom's of typically developing kids get to "outgrow" the diaper bag and move past stages into new ones.  At some point they get to leave some things behind. I realize that my boys too will outgrow stages and grow into new ones.  They will have successes and failures, but our family will always have that extra "diaper bag" that we will never get to put down.  An extra weight, an extra consideration, an extra burden that we will always have to deal with.  Some days it is light and I almost don't even feel it.  Other days the weight of everything brings me to my knees.

God chose me to mother these kids for a reason and I am thankful every day for that.

But some days I just wish I could put The Forever Diaper Bag down.