Where Does the Money Go?
Observational Vs. Experimental Studies for the Autism Vaccine Question

Racing for Progress

By Angela Warner

Let me start from the beginning. My husband is a member of the Air Force Base Honor Guard. A couple of weeks ago, Dave had a detail. The detail was for the NASCAR Camping World Series at Portland International Raceway.

Neither I, nor our children, have ever been witness to Dave performing an Honor Guard detail. Dave used to be a big NASCAR fan; in fact we have a few things signed by Dale Earnhardt. I had been debating on whether or not to take the kids for weeks. Saturday afternoon one of my dearest friends called me up, on her way home from a meeting. “I’m coming to pick you up. We’re going for a bite and a drink”. We have been working on, shall we say, some treatment stuff. (More to come on that) So we ate, had a drink, and then brought the rest of the meeting back here to my second office. The garage, in lawn chairs. Laugh if you will…

After the meeting was over, she and my hubby brought me to tears. The mantra was; “You NEED to take some time off!” I still was not sure if I wanted to take the kids and go. I really wanted to take the kids. I’d never been to a race before. I wanted to take all of them. What am I thinking? I don’t even take all of them to the grocery store together. Two maximum; that’s fun planning when your spouse is deployed. 

I thought I had lost my sanity. Take all of them? I wanted to see Dave. I wanted our children to see their dad. They are so proud of him, as he is of them. I had no idea what to expect. I was as prepared as I guess one can be, given that when I used to go grocery shopping, I could not get Nathan down the aisle fast enough. If I paused to look at ingredients or compare prices, he was pulling cans off the shelves and stacking them up on the floor in front of where they were on the shelves. I imagine those folks were happy when Dave returned home and we moved. I kept telling myself, it will be ok. I felt like I was lying to myself. Let’s go to the park? That’s one thing. A NASCAR event; quite another. Nathan is easily over stimulated by too many visuals or too many sounds. I knew there would be both.

We had to do it; I had to try, the kids had to try.

I woke up Sunday morning. We’re going. Shower, hair, face, kids, diaper bag, and water. All of us out of the house and on our way. Silent concerns about porta-potty’s and tethered cord (I’ll be writing more about that too). We’re doing this! I think what ever bit of sanity I had left blew out the window on the way to PIR.

When we arrived, we immediately found where Dave was supposed to be. A couple hours later Dave was on the start / finish line with his team, the colors, and his rifle. We were seated in the front row of bleachers directly across from where he was (less than 50 yards away). I was so proud. The kids were paying attention to what was going on (although extremely antsy), and so proud of their dad. As a military spouse, I can not describe my feelings at seeing my husband protect our country and the presentation of our flag. I was physically unable to stand and put my hand over my heart during the National Anthem (Samantha was hot, tired, and sitting on my lap crying), but my Autism Salutes pin was over my heart and I felt with all my being, that our country understood.

Just after Nathan regressed in 2004, he had a meltdown that few to this day have topped. My mom was cleaning up from dinner, clanging pots and pans; the TV was up really loud; the house was really bright; the kids were having popsicles, and all of a sudden Nathan let loose. I mean he let loose like nobody’s business. A voice kept telling me that if I could get him downstairs into the tub he would be ok. It took every bit of my strength to carry my flailing, screaming, hitting, kicking, and biting child down the stairs and make it in one piece. That was one of the worst nights of my life.

It would be months later that I would figure out that the meltdown happened because he was so over-stimulated by the loud pots and pans, TV, bright lights, and cold popsicle. As we were sitting in the stands watching the race I realized we had all the ingredients for the perfect storm on our hands. The kids were all enjoying sno-cones, it was hot, there wasn’t a cloud in the sky, and man was it loud! I was mentally prepared. There was to be no storm that beautiful day! The kids were awesome! A bit, well, ok… a lot, over stimulated? Hell yes, especially Nathan! But I learned an important lesson from my kids. They need a big test every once in awhile. This was a big test for sure. They all did so well, we stayed for almost the entire race!

Sunday taught me that I need to take more time for family. I have sacrificed, but my own children have as well, even as I’ve been fighting for them to bring them to where they are now. By this outing, my kids, especially Nathan, taught me just how much he (and they) can stand, how much he can tolerate, and how far he has come.

It has been years since we’ve been able to do an outing of any type; this was the first time since autism entered the picture that we’ve done something as a family with no meltdowns! A few days after the race, I talked with Nathan’s kindergarten autism classroom teacher (who was also his therapist during Dave’s deployment last year), and she laughed with joy when I shared this all with her. Her response? “Nathan wouldn’t have been able to handle that a year ago; forget about when he was in kindergarten.” Being insane sometimes can prove to be quite lovely! NASCAR was Sunday Mass. We all need communion every once in a while, right?

Angela Warner runs Autism Salutes and is actively involved in autism advocacy, especially for military families. 

Comments

Amy in Idaho

There are few that truely understand the stress involved with "community outings". Even when they go well (and we relish those in-the-moment occasions), we have an almost increased level of stress with second attmepts. The prep work for that alone is exhausting: are we all wearing exactly the same thing as before (check!), is the barometric pressure the same (check!), are we riding in the same car (check!), are we taking the exact same route as before (check!), did we eat the same foods as before (check!). Despite all of our efforts, sometimes the cards just play differently with second attempts as previously perfect public outings.

But we never stop trying and never stop believing that it's the right thing to do.

Congratulations on having such a great day and inspiring the rest of us to keep at it, no matter the result.

Benedetta Stilwell

That does mean that future outings will get easier as time goes on. You did good!I am impressed that your husband was a part of this NASCAR event, and so glad your kids got to see it. They will remember it too in later years.

Cathy Jameson

Ang,

We are counting down to our quarterly special needs family Mass--t-minus about an hour before my stress level goes through the roof. We cherish the times our family can attend and even participate in any social outing. The closest we get to doing anything public as an entire family is going out for dinner every few months. I actually welcome the loudness of the restaurant environment as it can help mask any meltdowns from Ronan.

I'm psyching myself up to be surrounded my like-minded friends who also can't make it to Sunday Mass. While it's a bit stressful for me, it's the opposite for Ronan. He hardly ever goes to Church with us anymore. When these special Masses come around though, Ronan claps when we pull into our Church driveway. He points, he starts to babble and he practically runs for the front door. Our priest opens the entire Church to Ronan--he can explore with no evil stares or Hrumpfs! muttered from non-understnding parishoners. I'm so thankful for this opportunity but also on high alert as our entire family braves the most sacred outing we can all manage.

Thanks for sharing your story and your triumph. It helps to understand and appreciate that little steps that couldn't have happened a year ago are huge milestones that can only get better.

Anne Dachel

Few people on the outside realize what it takes to be an autism mom. Congratulations.
Anne

nhokkanen

Congrats on getting through the NASCAR event. What a huge relief it is for parents when children are able to handle activities that would not have been possible six months or a year earlier. And what an improvement for the children when their fun isn't spoiled by stressors.

Years ago I had to carry my 60-pound child out of the State Fair grounds after he got overwhelmed. Foolishly we'd tried to go a second time after the first trip went well. Success means bringing noise-reducing earphones, wrap-around sunglasses, and taking frequent breaks to sit.

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