Saturday, November 10, 2012

Holy "I-Never-Update-My-Blog" Batman


A look back at the past year would tell me that so much happened in our lives, but none of it got on this blog.

But then I remember that so much DID happen to us. We were really busy. Which is why I have one post so far for the year 2012.

When I first started this blog, I saw it not only as a creative outlet, but a way for far away friends and family to catch up on our family. And I've done a really bad job so far.

But I want to change that. We have had some big challenges this year. Here's our story so far.

Roman started first grade this year. My baby is growing into such a big boy and will be outgrowing me very, very soon. We made the choice to homeschool this year for several reasons.

Last year, I volunteered almost every week in his Kindergarten class. And every single time I volunteered, I saw my son get behind. Not because he wasn't smart enough, but because he was distracted by something or someone. Something that happens to kiddos with autism a lot. When he finally got started on the task at hand, they were already on to something else. He never used his pencil grip, which is something that he needs to hold the pencil correctly because of his low muscle tone.

During recess, he would often fall and get hurt. He has poor balance because of his motor delay and low muscle tone. But he has an adventurous spirit and always wants to do what the other kids were doing. Like climbing on the big toys and swinging. But unlike other kids, if he gets distracted or bumped by another child, he'll fall. I know that children get hurt. I know that it's a normal part of life. But when it's every day, every time, it's a different story.

Roman is such a unique and awesome child. But he is different. And even in a "no bullying" school, he still got picked on. And he started to see himself not so much as "unique and awesome", but more of "different and unlikeable". And that's where I draw the line. He is an amazing, smart, wonderful kid. A friend of mine put it perfectly about her daughter who was homeschooled,

"She knows about teasing now; she didn't go through her entire life naive and oblivious to the social structure of Americans, she just got to figure out who she was a bit before she was blasted by those who told her that she was somehow insufficient."

Amazing. And dead on.

But our primary reason for homeschooling was to be able to keep him enrolled in autism therapies outside of school, three to four days a week. There he would get the social interaction from other homeschooled kiddos and the continued help for his challenges in life.

It was a perfect plan.

All that changed when we called our insurance company about a bill we received a few weeks after his seventh birthday. We learned that his autism coverage had been completely cut off the day he turned seven years old.

We were in shock. We couldn't believe that they would deny medical care to a child who legitmately needs it, just because of his age. We learned that Washington was one of several states that don't require insurance companies to pay for autism care after age seven.

It's ridiculous.

The reasoning behind it is that the public schools offer occupational, physical and speech therapy to children who qualify. But there's the kicker...."who qualify".

I learned early on when Roman was in developmental preschool that the public school system denies eligible children. They do it every single day. And even my child, who has the large motor skills of a child half his age, was turned down the first time. It's only if you push and push and push that they will listen to you. The squeaky wheel indeed, gets the grease.

And when the children do qualify, they get a half an hour of services per week, usually with another child. In comparison to what he was getting before (nine hours per week of quality autism care), it's a microscopic speck on a drop in the ocean.

We learned that because of Roman's hypotonia (low muscle tone), our insurance company will pay for 60 visits per year of physical, occupational, or speech therapy. And by "pay for", I mean they will cover everything outside of our $30 a session copay.

We also learned that to pay out of pocket for the therapies he was getting before he was cut off would be $4,000 a month. That's not a typo. $4,000 a month.

We applied for state assistance right after we learned that he was cut off. He was approved right away, which was great news! But then we learned that the waiting list for services was three years long. Three long, critical years.

So where are we now?

We made the decision to go ahead and homeschool Roman this year. If not for the reason that he'll be in outside therapy, but for the many reason I listed above it. And we are loving it. It's amazing to see his eyes light up when he understands something. Like really understands something.

We are paying out of pocket for a social group for special needs children for Roman. We really can't afford it financially, but we also know that we can't afford not to do it. We also have him enrolled in two other social outlets that are working out nicely.

We are still trying to get services through the school district. The woman I was in contact with through our homeschool program left her job without our knowledge and we got left behind. We have a meeting hopefully this Tuesday to discuss our options and I'm hoping and praying that it goes well.

In the middle of all this, we have been going through a major financial crisis. When I was diagnosed with celiac disease two years ago, our medical and food bills doubled. No more could I get a loaf of bread for $.99, now it was $6.00 for a small loaf that tasted like cardboard. There was a lot of adjusting. Add that plus our out of pocket expenses for Roman's autism care (keep in mind that this was when it was covered by insurance) and we were digging ourselves into a hole every single month.

We had to make some drastic changes in our life as a family. Zach's parents bought us a membership to Dave Ramsey's Financial Peace University, a class that reteaches you how to manage your money. It was one of the best gifts we've ever received.

I re-learned the power of a dollar. As the homemaker in our family (in my opinion, a kind of defective one at that), I realized the huge impact that I can have on my family's success.

So I cut back on Starbucks to once a week. I started making everything from scratch. And when I say everything, I mean everything. Waffles, bread, salad dressing, tortillas, pumpkin spice sauce for my coffee, everything. Having celiac disease, the two choices are make your own, or pay out the nose for something premade. I even started buying flours and starches in bulk and mixing my own gluten free flour mix, which costs me a quarter of what a premade mix costs.

Did I mention that I'm a defective homemaker? Well I am. I hate to cook. I hate to clean. I don't live to serve others. I work. I require an artistic outlet lest I go insane. And now I homeschool a first grader to boot.

Did I also mention that I'm insanely busy?

But this is where my crazy organizing skills come into play. I love to organize. I live to organize. Organizing is my friend. I actually had someone tell me once, "you're too damn organized". Of course I laughed because you can never be too organized. But I digress...

In the midst of all of this craziness, I didn't make time to post on my blog. Because I've been teaching. And baking. And cooking. And cleaning. And working. And banging my head against the wall. And scraping together some time to do something - anything - creative to keep from going bat poop crazy. And many days, falling into a deep depression because everything seems so overwhelming. And so unfair to my innocent little boy.

But there is a light at the end of the tunnel. All the hard work I've been doing with our finances have been paying off. We are now spending.......drumroll please.....less than half what we were before on groceries and eating out. And I'm hoping to get it down even further. Eventually. Baby steps.

I've been able to work with Roman on his fine motor skills through handwriting. And because we are homeschooling, I can make sure that he uses his pencil grip every single time. And make sure that he is having a great time learning. We also started using a chart where Roman can earn "Superflex bonus points", a.k.a. quarters. If he does something flexible, something outside of his usual comfort zone, then he gets a bonus point. Seeing what lego sets he can learn by being flexible has really helped him grow. Tonight he even tried sweet and sour sauce! Which is huge - this is a kid who doesn't like sauce, frosting or glaze at all. Even on his birthday, his cupcake had to be frosting-free. His occupational therapist would be proud :) a really long, wordy, drawn-out nutshell, that's what's been going on with us recently. But we are happy, healthy and grateful for all the blessings that we have in our life. With the holidays fast approaching, my favorite creative outlet of all is coming, December Daily. I am so excited!

So stay tuned, I'll be uploading a few videos about my album this year in the next few days. I've challenged myself to only use materials that I have on hand. That's right, I'm not allowed to buy anything this year. Not even a piece of paper. Nada. Zip. Challenge accepted. Bring it on.


  1. Amy, after watching your inspiring Dec album video, I decided to go thru your previous posts and found myself shaking my head when reading about your son. I, too, have a special needs child and was very impressed with what you are doing for you autistic son. While my son isn't autistic, but has numerous other issues (significant LD and health issues) and he has taken a huge amount of time/money. We bought a different (overpriced) house, so that my son could go to a different school to receive services. I can so relate to everything you are saying. Again, wonderful post! Now I need to track down those Hamley transparencies.

  2. So wonderfully written! I adore you Amy and am so impressed with the hard decisions you have made over the last year all the while holding your head high focusing on the positive. Sending you big hugs and lots of love!