Saturday, December 26, 2009

Some December Tidbits from "Same Child, Different Day"

I just realized that this must have been a busy month. I haven't posted anything in almost 4 weeks which, no matter what has been going on, is a rarity for me! There has been much ado in both our autism and non-autism worlds, and I guess time just got away from me. I mean, holy cow! Can you believe another Christmas has come and gone? Here's where we were last year with this blog: Same Child, Different Day Content - I was still describing the chapters of the booklet and was only on the 4th post! This is the 45th post, and so many people say they have been helped by both this blog and the booklet "Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis": Review, Reader Critiques, Global Reach, Radio Interview.

I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?
  • Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
  • Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
  • I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
  • We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
  • Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
  • (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.



Deanna Schrayer said...

What a busy month ya'll have had Jon! I'm so glad to hear you got action with the state, but what a punch in the gut from the insurance. If it's not one, it's the other, huh? We're fortunate in that our insurance covers most of Jimmy's therapy, but we do have to meet the deductible first, and then they only cover so much. Makes you wonder why we even have it sometimes.
How wonderful that Lori is going to study pediatric physical therapy! I hope she enjoys it.
Thanks for the mention too. I'm only one parent in a world of many, but I hope I'm one that makes a difference somehow, even if it's only for one person. By the way, I posted a blog today about the past year's accomplishments too, and mention a big victory for Jimmy.
Am heading over to the AC article now. I hope 2010 brings much happiness to you and your family!

Corrie Howe said...

I agree, you have been busy in your household and sound like you will remain busy for awhile.

We are fortunate because we are covered by military insurance. Since my husband retired after 20 years, we will be covered for life and the kids until 22. Depending upon how independent Jonathan will become, he might also be covered for life. And the military has now decided to cover any thing related to autism. Much better than the first couple of years when they did not.

Jonathan said, "I'm so honored everyone gives me gifts at Christmas." And then he proceeded to hide most of the day as we had a house full of people, which is unusual for us at Christmas.

Rachel said...

Jon, I don't celebrate Christmas, so I can only give you an outsider's perspective on your Christmas morning experience, but here goes...If I were at your house on Christmas morning, and the girls were running over to unwrap their gifts, and they were all excited, and I could feel your hope and expectation that I would be excited, too, I would probably want to do what Nolan did, because I'd be totally overstimulated and freaked out. However, because I have many, many years of pretending not to be overstimulated and freaked out, I would just quietly sip tea, smile, and go home with a really bad migraine.

The bottom line with autistic people is that what looks simple to NTs is hard for us, and that it's very hard for NTs to get that. Even my husband sometimes blurts out, "But it's so simple!" when I get paralyzed over being asked to interrupt a motor task and answer a question. And the worst part of it for me is that I am a very intelligent person but can't manage some stuff that even I think should be simple!

Nolan had the Christmas that Nolan could do. And that's really wonderful. He can be himself because he feels loved. That's not an experience I had at his age, and it's worth more than all the presents you will every put under your tree. You can depend upon it.

Jon G said...

Deanna, As always, thanks for posting. I always appreciate the comments you make and advice you give. We'll get through the insurance debacle, if I have to march up to the Capitol myslef! Lori will do wonderfully in her classes, I'm sure and thanks for commenting on the A/C article. I hope more do as well.

Jon G said...

Corrie, we are so hopeful that Nolan gets to the point where we can have those conversations with him, even if he DOES end up hiding in his room. For now, I guess we take all the days we get and be thankful for them. he's such an inspirational child...if he was not, I would not have created this blog and the booklet. thanks for stopping by.

Jon G said...

Rachel, thanks ever so much for stopping by again. And as always, than you for the 'insider's look' at the whole experience. Your unique view point always tempers my thoughts and fears. My readers are so fortunate to have your comments to view. Thanks again for stating quite clearly that Nolan is who he is and does exactly what he should do. No more, no less. Please keep visiting!