Seems like we blinked and summer was over. We had all of these plans to take some staycations and enjoy being home for the summer. Yeah... that didn't happen. The summer just flew by. And now we've got a 5th grader and a 2nd grader in our ranks. We're looking forward to a fun year!
Friday, August 28, 2015
Saturday, August 22, 2015
It started with a social media connection. Many of my autism warrior friendships started that way actually. We've become a large extended family - all fighting the same battle. We pray for awareness and acceptance. We encourage each other through stories of triumph and hope. We understand the importance of small victories like delayed first words and eye contact; we fear things like wandering and the heartbreak many of our families have experienced in its aftermath. We get it... and we're surrounded by friends and loved ones who get it too. Our village.
Then there was the email I received back on May 1st from Michele Maha. She and her husband Julian founded an organization in Birmingham, Alabama called KultureCity. Their mission is an amazing one. While many autism organizations focus on awareness, KultureCity's goal is to provide tangible help and equip businesses and the community with to aid and understand children and families affected by autism. From art and music camps, scholarships, connections to service providers, IPads, and their lifesaving lifeBOKS, the Mahas have dedicated themselves to making a difference in the lives of our families and communities all over the world. And they understand... they have a son with autism.
|A beautiful reminder in Birmingham.|
Michele invited me to learn more about KultureCity and I was impressed by their mission. The number one complaint I usually hear from autism families is that there is enough awareness... we need help. Real, tangible help. And KultureCity seems to be filling that void. Check out some of their amazing initiatives here.
Michele invited me to Birmingham to receive an award for my autism advocacy. What an honor. I was truly blessed to be among some of the movers and shakers in the autism community. I'm still in awe of this amazing group and all of their accomplishments. From an NFL great, a child prodigy, and a fellow reality star, the list was impressive!
My KultureCity trip began with a presentation and panel discussion at the Ignite conference. It was pretty incredible. The following morning, we were treated to a VIP party at jewelry store Kendra Scott. We sipped mimosas while customizing jewelry and having some fun and much needed girl time. It doesn't get much better than that.
A highlight - I finally got to meet my autism sister Jacqueline Laurita of the RHONJ. We've been "Twitter" friends for years and finally got to connect in person. It was great! She and her husband Chris will be in Dallas next month for Generation Rescue's annual conference - can't wait to see them in the big D!
And then... there was the KultureBall. Over 500 people dressed to the nines came out to raise tens of thousands of dollars for KultureCity and its lifeBOKS and #18forlife program. $18 will provide a potentially life-saving kit to our families. There have been so many autism wandering deaths recently - sad, tragic, preventable stories. KultureCity is trying to prevent them and these kits are making a difference.
My family and KultureCity knows how to throw a party for a cause. What a memorable couple of days in Birmingham. I'm so blessed to be a part of the KultureCity family and I look forward to helping out as much as possible in the future. Because that's what family does... (and I have to send a special shout out to Diane Zaragoza for being such an incredible hostess).
|With Kevin Spencer and Dahn and Alimi Ballard|
|With the man... Jacob Barnett. Google him.|
|Mike Vo (we2o founder) and Patrick Whaley (TITIN Tech)|
|c. David Bley Storytellers|
|c. David Bley Storytellers|
Wednesday, August 19, 2015
I'm tired... already exhausted from fighting a fight I thought I was done fighting years ago.
My child has autism. There are fleeting moments of "normal" every once in a while that allow me to forget this very fact. Like today when after dinner, Will and I were walking to my car. I put my arm around his shoulder. He responded by putting his arm around my waist. Normalcy. An embrace between a mother and son. Of course, after about a nanosecond I realized how special that moment was - that my son with autism responded to my touch by reciprocating with his touch - and it wasn't so normal anymore. Autism. I'm reminded of it and the impact it's had on our lives - every second of every minute of every hour of every day.
When Ryan was playing in the NFL, we had THE BEST insurance - unless we needed autism coverage. Our policy through Cigna would pay for a medical evaluation for autism, but specifically and explicitly excluded coverage for autism treatment including speech therapy, occupational therapy, physical therapy - pretty much any therapy you can imagine a child with autism might need. After being pre-approved for speech therapy, we got a denial letter for $5,000 worth of services. We had to fight to get the services (that had been pre-approved) covered. If anything, we went out of our way to prove Will needed these services despite having autism. We eventually got the speech therapy covered... his "developmental delays" were clearly caused by the repeated "otitis media" (a.k.a. ear infections) Will suffered as a child. But it wasn't because of autism, because if the delays were caused by autism, therapy wouldn't be covered.
Unfortunately, our NFL insurance coverage expired (yes, it actually expires contrary to what a lot of folks think) and after paying for 18-months of unconscionably expensive COBRA coverage, we were forced to find a new policy. I was careful to seek out a plan that would continue to cover the ongoing therapy Will was receiving at Easter Seals every afternoon. Coverage under our new policy was working out great (it started in March) until we got a letter saying that Will's services were being audited. Even though Will has been receiving these services for a while now, we are going to have to prove that they are "medically necessary" (buzz words) in order for them to be covered.
Although Will has been identified as a child with autism for educational purposes (annual ARD meetings - another great reminder that your child has special needs), he has not undergone extensive (and expensive) medical testing for autism. Remember, we'd avoided such testing in the past knowing that had Will been diagnosed on the spectrum, his therapy wouldn't be covered. But now, all indications suggest we'll have to seek out a developmental pediatrician, neurologist or psychologist (or a combination of all of the above if we really want to cover our asses) to get a medical diagnosis so that insurance will cover Will's therapy. And we'll have to go back to said specialists regularly to maintain that diagnosis because the need for continual therapy has to be justified. And we'll keep getting letters from the insurance company asking us to prove said therapy is necessary - our policy states Will's services can be audited every three months. So even though Will has autism, even though there is no cure for autism, even though there is state law requiring insurance companies to cover autism therapy in Texas, even though... we now have to expend tremendous resources (time, money, etc.) proving that Will still has special needs... that he has autism... and that our lives are anything but normal.
I'm tired. Already.
(An aside: I've chosen not to mention our new insurance company by name yet because our issues with them are ongoing and I don't want to do anything to jeopardize coverage for Will's therapy. But this company has apparently raised some red flags in the autism community because of it's denial of services. If I start referring to the company by name, you'll know things have gotten worse.)
Monday, August 17, 2015
Bryn had her hair done professionally for the first time today. Those gorgeous curls of hers needed a trim so I took her to see my friend Ryan Abbott down in Dallas. After this guy butchered my hair and gave me a six-inch "trim" a couple years ago, Ryan was the only one I let cut my hair. I trusted her with Bryn and all went well!