Thank you to everyone who purchased a Songbird Ave kit last month. All together we raised $6816 for Autism Speaks. Special tremendously heartfelt thanks to Jessica Sprague whose donation challenge during the last week of April really helped us reach this awesome sum.
You may remember that all this month Songbirdave.com has been selling a digital compilation kit that I helped design with proceeds benefiting Autism Speaks in honor of autism awareness month.
Well this morning I opened an email from Jessica and learned this:
Between now and the end of April 30th JessicaSprague.com will match each kit purchase with a $2.00 donation to Autism Speaks.
Seriously. Talk about spreading the love.
After reading that I decided that I can spread some love too and will also match each kit purchase with a $2.00 donation to Autism Speaks.
That's $4.00 on top of what is already being donated through the purchase of the kit.
Here's the kit:
How about spreading some love today?
Purchase the kit here.
See my sample layouts here.
Love you Jessica. Thank you.
Today is World Autism Awareness Day.
As you may have read in the giveaway post yesterday, I teamed up with the designers at Songbird Ave to create a digital kit in honor of Autism Awareness month. All proceeds from the sale of this kit benefit Autism Speaks.
My son was diagnosed with autism right around the time he turned three. It has been quite a journey; many stories have been documented here along the way. We celebrate his successes both small & big, and diligently work through the challenges. We embrace him for the awesome, tender, hilarious, sweet kid that he is.
You can read past posts about our journey here.
To learn more, including the signs of autism, go here. There is also a pretty good FAQ here.
Below are two more examples using elements and templates from the Songbird Ave Bloom & Grow kit:
How about a layout where the entire background is a photo? I have done a few of these in the past with enlargements and am planning to do some more for Anna's book. I love working off one big image background - it poses a whole new set of design challenges.
Loving scalloped edges right now. Either digitally, or with the Threading Water punch, I have been wanting a scalloped edge on just about everything I have put together recently.
For information on working with digital layered templates check out my Hybrid/Digital Scrapbooking series of posts.
I also wanted to take this opportunity to say Happy Birthday the Hero Arts blog. They do such a great job of showcasing stamping tips and providing inspiration for all levels of crafters. You may also be interested in their contests and videos. Happy Birthday!
I received a couple emails recently that linked me to something super cool: the Zac Browser.
Here's the news story from ABC: Grandfather Builds Web Browser for Autistic Boy
The only bummer about it right off the bat is that it's only compatible with PC's.
This is cool : Digital Scrapbook Mega Kit for Autism (via Colleen)
Just a quick note to let you know that today is World Autism Awareness Day. You can read more about the happenings and media events by checking out this link.
Here is an email forwarded to me from the Autism Society of America yesterday:
This morning, President Bush vetoed the FY 2008 Labor, Health and Human Services and Education Appropriations bill. This bipartisan bill had strong support in both the House and the Senate, but the President objected to the overall funding levels of the bill, which includes modest increases for vital programs - most of which have experienced significant cuts, lost purchasing power or both over the past three years.
This legislation includes significant increases for autism programs at the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration and the National Institutes of Health. These increases represent full funding of the Combating Autism Act, and are critical in improving our ability to diagnose, intervene and develop new therapies for autism. We need this crucial investment!
The House could move to override the President's veto as early as this week. Contact your Member of Congress and urge them to vote YES on the veto override.
To send an email to your congressional delegation click here.
We spent the day up in Portland at OHSU (Oregon Health Sciences University)/CDRC (Child Development & Rehabilitation Center) getting Simon set-up to participate in the Autism Treatment Network (ATN).
Here's the basics of the ATN (from the link to Autism Speaks above):
The goal of the ATN is to improve medical treatment of children and adolescents with autism by establishing standards of clinical care based on research and shared clinical practice. The ATN is dedicated to establishing these standards of care for autism in the medical community through open research collaboration, trainee mentorship, medical education and participation in conferences. The ATN is further committed to improving insurance reimbursement for autism treatment to improve accessibility to these treatments community-wide.
Here is a list of places that are currently participating if you are interested in more information or enrolling your child - it is totally worth checking out - it is also my understanding that the program will be expanding to other places as well in the near future:
Our time today was essentially spent meeting with a child psychologist who ran through a couple diagnostic tests with Simon and a series of questions for us, meeting with a nutritionist, and then meeting with our developmental pediatrician (we also see him here at CDRC in Eugene). We came home with a very large pile of paper work to fill out that will be added to the research data.
We were really excited about the chance to meet with a nutritionist who did a big intake on what Simon eats now. She will be running the data and coming back with some strategies (in conjunction with an occupational therapist) on how to work on/change/improve his overall diet.
Simon did really well today during the "meetings." He was motivated to "work for" a ride on the tram that was closed the last time we were in Portland. The weather was awesome today - just perfect for a ride. We heard "I'm so excited" quite a few times as we waited for and boarded the tram.
The view while waiting up at the top of OHSU: 
Looking down: 
Inside the tram riding down: 
And thanks for all the birthday well-wishes.
A very interesting and thought-provoking podcast from Speaking of Faith about autism is available here. I was especially drawn to the theme of embracing that ran throughout the interview.
Speaking of Faith is a weekly radio program/podcast that offers a wonderful variety of interviews with people from many different faith traditions (emphasizing ideas, meaning, religion, and ethics). Click here for background information on the show. You can subscribe to the podcast here.
So far today has been all about grocery shopping + more pumpkins + emails (playing big time catch up). This week I am trying out an entire menu from Everyday Food - took the magazine with me to the store and just went right down the list. Making this one tonight.
Chris and I wrote up the following together today as we reflected back on the show:
We had a chance to watch Jenny McCarthy (and Holly Robinson Peete) on Oprah. So many things we can relate to in both of their stories. Lots of emotions and memories as we watched. We both made comments throughout the show to one another - many in agreement and some questioning.
Here's what we think was good: continuing to talk about autism and all the different treatment options (especially the biomedical options). General awareness is so important as early intervention can make such a big difference. Being on Oprah is a huge audience and opens to door of basic information to so many more people.
For many of you who watched it may be the first time you heard about the diet (gluten/casein free - GFCF). We started the diet almost immediately after Simon was diagnosed. In many ways it simply gave us something to focus on and we figured we might as well give it a try.
In Simon's case we did not see much of a difference after removing gluten - we did notice that his runny nose stopped after removing the milk. I have read many stories (similar to Jenny's) in books (and more books) and online where removing gluten has made a huge difference in a child's behavior - including improvements in speech, eye contact, stimming, etc. If you are interested in reading more, Talk About Curing Autism Now is my favorite site for information (including a fantastic getting started guide). They also have a page with a bunch of different diet links.
The diet is challenging (and can get complicated if you need to also remove soy, corn, rice, etc - you would find this out after testing with a DAN doctor), but completely worth a try. There really is no one-size fits all approach for any of this. If you are interested in trying some of the biomedical interventions (such as the diet) I suggest you hook up with a DAN (Defeat Autism Now) doctor. It is a day to day journey to say the least.
At this time Simon is not on a gluten free diet. It may be something we will try again in the future if we begin seeing more complicated behavioral issues and/or regressions.
Another topic that came up on the show, and one that is very controversial, is the subject of a link between vaccines and autism. In Simon's case we did not notice any visible difference in him before and after his shots. But in reality we don't just don't know. No one knows. Having said that, we do not discount other parents who feel from direct personal experience that there is a link between the two. If you were to see an immediate change in your child from one day to the next with your own eyes you may suspect a link as well.
After lots of thought and discussion (and some prayers), Simon did receive his vaccinations to enter kindergarten - but only after we personally inspected the ingredient lists to confirm that they were thimerosal free (mercury-containing preservative). According to the CDC, "Today, with the exception of some Influenza (flu) vaccines, none of the vaccines used in the U.S. to protect preschool children against 12 infectious diseases contain thimerosal as a preservative." We are not anti-vaccine. We are simply parents who are trying to do the best for their child.
We do however agree with Holly Robinson Peete's comment that while the Center for Disease Control may not agree that there is conclusive evidence to suggest a link between autism and thimerosal, at least we should talk about whether a one size fits all vaccination regimen is suitable for all kids. As autism has shown us in the most personal way, these kids are all unique - every child, with autism or not, is unique. They say that if you've met one kid with autism, you've met one kid with autism...you can't draw conclusions about one by what you have seen with others. That seems to be true not only for symptoms, but for treatments as well.
No one knows what causes autism. Our guess is that it is the result of a combination of factors - perhaps exposure to something in early childhood environment that only affects those kids who have a genetic predisposition. But again, who knows?
We are not a researchers, we are simply parents to one fantastic little boy. As parents, our main focus is Simon and how we can help him be successful in his life (in whatever that will mean for him - right now he wants "to go to college" and be an astronaut). Our day to day experience is one of much joy even in the midst of all kinds of crazy challenges.
The bottom line for us: he is one awesome little kid.
As you think about leaving comments, please be respectful of one another's thoughts and opinions. These are sensitive issues with all kinds of different angles. A simple google search on any of these topics will lead to massive amounts of information producing arguments both for and against everything related to autism (enough to make you want to hide out for days rather than forge ahead).
Peace be with all of you who are on this journey right now.
