Advocacy Rocks

I was proud today to be a part of a large group of RockStar autism advocates to show support for Autism at the Texas Capitol.  Autism Society of America, Autism Speaks and The Golden Hat Foundation were all there to help bring more visibility to our kids and adults with autism.  There was a breakfast where we had to opportunity to chat and mingle with other advocates, legislators and staffers, a press conference, and then we all gathered for Recognition of Autism Awareness in both the Senate and House, as well as the reading and passage of Resolutions for Autism Awareness.  We were privileged to hear some of our State legislators speak to the importance of the 2 autism bills that are coming up for vote - HB 3276 (autism screenings) and SB 1484 (removing the current age cap of 10 years to the insurance coverage mandate for Texas).  It was truly inspiring to see so many faces, some familiar, some not, all coming together to advocate for kids like Corey.  What a great way to cap off Autism Awareness Month.

Our efforts did not go to waste -- the Texas State Senate passed SB 1484 this afternoon, moving it on to the Texas State House of Representatives for consideration!  This is a HUGE step for families in Texas affected by autism.  Our kids don't suddenly stop having autism when they turn 10, and most still need therapy to help them continue to progress and have their best shot at eventual independence. If you live in Texas, please take a minute to thank 8 amazing Senators that helped make this happen today - all you need to do is click this link, and follow the simple instructions.

For many the end of April means moving on to other causes or projects.  For families like ours, autism awareness lasts all year long.  We will continue to advocate, educate and cheer for those affected by autism.  How about you?

Would you like to help us advocate for individuals with autism?  Here is an easy way to help out... <Click Here> to learn more...

Food, Glorious Food!

Thinking about food today.  Perhaps its because I have some yummy Meatloaf Cupcakes in the oven right now, making the house smell divine...

Food can be tricky in the world of autism.  Food aversions, due to intolerances, textural, taste or smell aversions, or simply the rigidity that often goes hand in hand with autism, are very common.  For many individuals affected by autism, things that are different cause a great deal of anxiety - this can be anything from schedule changes to unfamiliar/not preferred food items. They may want to try the new food, but literally cannot make themselves do it, or they may not even want to consider it at all.  Many kids end up self-limiting their diets down to just a few foods, and often unhealthy ones.  As parents of these kids, it is imperative that we take control of this situation and help them work their way out of it in order to promote good health and eating habits.  This isn't always easy, though.

Corey was a tough nut to crack - he had food intolerances that caused him GI discomfort (to put it mildly), and some serious textural aversions.  By identifying his problem foods (via a combination of trial and error and blood testing), we were able to slowly get him on the right track.  We implemented an in-home version of feeding therapy (our insurance didn't pay for such things then). And, as his body became healthier, this food intolerances began slowly fading.  As things got better with his health, his developmental progress picked up, his behaviors decreased.  We still keep him off of the biggies - gluten, dairy, soy, peanut and yeast, but that is a piece of cake compared to before.  We also, as a family, avoid artificial colors, preservatives, high fructose corn syrup and GMOs as much as possible and do organic as much as we can.  I have learned so much about healthy eating on this journey with autism.  I can't help but notice how much more healthy our kids are than many of their peers at school - less colds, flu, etc. We try to eat "old school" - meaning real food made (mostly) from scratch, like our grandmothers did it.  Doing this means less chemicals and other yucky things going in our bodies - and how can that be a bad thing for us, right?

Do we feel deprived of yummy food?  Hardly... Today's lunches for the kids
consisted of:

For Corey - a healthy (preservative free) ham and salami sandwich with mustard, spinach and arugula, fresh grapes, celery, carrots, tomatoes and a pickle
For Mia - clean eating tuna salad, organic honeycrisp apple, carrots and tomatoes

Dinner tonight will be meatloaf cupcakes with mashed potato icing, and fresh broccoli and an artichoke.  Nobody seems to miss things like "Hamburger Helper" or the like.

Yummy brownies with the protein punch of black beans...

Salpicon - home made shredded brisket, with seasoned vinegar, cucumber, and avocado, served on corn tortillas

Clean eating version hot dog muffins instead of store bought chemical laden "corn dogs" - This is a kid meal that I can stand behind!

Clean eating gingersnaps, gluten free, vegan, and better than store bought.

Siblings Rock

A word about siblings... Siblings of kids on the autism spectrum don't always have it easy.  They will find their patience tested, deal with compromises that may not always seem fair, and will often be expected to show more responsibility and maturity than their peers.  The amazing part, in my book, is watching them rise to these challenges with grace.  Mia is Corey's baby sister, but also his champion and his defender, in her own way.  She has a natural instinct for recognizing and opening her heart to kids on the spectrum, befriending them and standing up for them.  She is fiercely protective of her brother, and has a passion for advocacy - all of this at the ripe old age of 8.  She has even given a blood sample as part of an Autism Research study.  She and Corey never fight (seriously), and she cannot quite wrap her head around why her peers fight with their siblings, as siblings (generally) do. They both truly adore the other and enjoy being together. How we got that lucky, I have no idea.

We recognize the sacrifices that Mia makes because she has a brother with special needs, and make our best efforts to give her things that are just for "Mia" - special outings, her gymnastics classes, movies and the like that are not about Corey at all, because she needs to know that she is every bit as important to us as her brother.  She is, after all, so much more than "Corey's sister"... She is a rockstar kid in her own right.  Sometimes this means pushing Corey to deal with something that is not his cup of tea, sometimes it means she gets a "date" with mom or dad on her own.

Balance is a goal that is never easy to achieve, but we are doing our best, and I think, I hope, they both see that.

Batter Up!

Spring is here - time for flowers, crazy weather and Baseball!!

We are so grateful to have the Miracle League here - it gives Corey the opportunity to play baseball in a supportive environment and have good old fashioned fun.  For parents of kids with special needs, this is such a big deal.  We can actually hang out and watch the game, like "regular" parents, cheer for our kids, and relax for a bit.  The teens that serve as "Buddies" for our kids are just awesome - they give up a good chunk of their Saturdays for the Miracle League season, with smiles and grace, in order to help our kids, no matter the disability. 

To read about this incredible organization: Austin Miracle League

Corey has come a long way since his early days on the field... When he started, he was so nervous he had a buddy and his dad out there on the field with him.

Now, he hits the field with a smile and hits off pitch before running to first with his buddy, Bastian.

He's come a long way, baby.  And, yes, he and his Buddy have grown up a lot since the Fall of 2007.

For "Those Days"

Some days having a child with autism feels relatively "normal" - at least my normal.  He is predictable -- I know what will make things smooth, what will be more challenging, and I can choose whether I want to take on those types of things.  Other days, are just hard.  Days like when I had to take Corey to the ER for xrays after an awkward fall and wrist/hand pain that was increasing instead of decreasing as time went by.  That was hard - the ER is a scary place for most, but even more so for a kid with autism.  Strange noises, smells, machines, people, requests, etc... He handled with a lot of grace, but some difficulty, and we survived, and no break, so Yay!

For days like that, when I have more on my plate than I feel like I signed up for...

So - I guess I am a bad-ass.

Awareness Every Day...

What does Autism Awareness mean to me?  Today it means remembering that just because my kid doesn't always reach milestones on the "traditional" timeline, doesn't mean he doesn't reach them...

When your child has autism, some things come hard, really really hard.  Speech is one of those for Corey - we are so lucky that he is now verbal, even if he still has a long way to go to catch up to his "typical" peers. He has worked so hard, years of therapy, school, more therapy and lots of encouragement and gentle prodding at home. (And not so gentle prodding - little sister is kinda bossy, but he loves her...)

Some things I have learned don't need to be pushed, I need to just peace-out and let them happen on his timetable.  Corey has spent his entire life in car seats, then boosters, and finally backless boosters whenever traveling by car.  He is huge on safety, and very intent on making sure that he and everyone around him is buckled and safe in the car.  When he grew big enough to not have to remain in a booster any longer, I told him and showed him he could sit in the seat without it, and he was horrified!  Why would I even think of removing this safety measure?  Crazy, of me, right?  Yes, most kids are thrilled to be out of the dreaded baby seats, but Corey isn't most kids -- and that's OK.  Autism means that Corey often finds change to be scary, even terrifying.  Why force him out of a booster when he could still fit comfortably and feel safe?  No good reason that I could think of, so he kept it, and all was right in the world.

Fast forward to today... Today is the day that Corey decided that he is big enough to ride in the car without his booster, and so he did.

Is it just me?

I am so sick and tired of the warring factions in the world of autism advocacy.  Why is it that so many can be such great advocates and, yet, at the same time, find the need to backstab and undermine others who are also trying to help the cause? Just because not everyone is going about it in the same way does NOT mean that they cannot all contribute to the bigger cause - helping those affected by autism.  Isn't that the point?

Some amazing advocates are on the warpath against Autism Speaks again. Is this organization perfect? Of course not - neither is yours, people. Autism Speaks does a lot of advocacy work - one of the most important things (in my opinion) is the work they do as Autism Votes.  They advocate and lobby all over the country for legislation to help protect the rights of those affected, get them insurance treatment coverage, etc.  These efforts have directly impacted my family for the better.  Corey is in daily therapy, paid for by insurance, because of these efforts.  We could never afford to get him this kind of help $25K+ last year) without autism treatment coverage via our medical insurance.

Other organizations are doing wonderful things, too - National Autism Association, Autism Society, TACA, to name but a few, all do wonderful work educating, advocating, networking, providing assistance via grants, referrals and in many other ways.

So - bottom line - "Can't we all just get along?"