It’s a good news sort of day. I found out recently, that my husband’s deployment will not be 180 days, but I still plan on counting down to 180 days, because it just doesn’t make much sense to me to change the title, now. We are actually well over 50% complete on this deployment, and I was looking at the calendar, and the next 8 weeks before he comes home are going to be booked! There are 3 projects I have to complete– the landscaping project which is well over 50% complete, painting my room, and painting the kids’ rooms. I would like to do a garage sale and get rid of some clothing. I would very much like to buy some new furniture or something as a treat saying that I got through this relatively unscathed. Yesterday I booked a golf trip I had won at a local autism event, and we have another kid-free weekend planned over Veteran’s Day weekend. I have so much to look forward to, even though there are a few things mixed in that I’m not anticipating. You take the good with the bad.
Month: July 2013
Day 88: July 30, 2013
Just when you think things are going well, Jeremy Hilton posts a copy of the latest filing from Tricare to the US Supreme Court, and that particular filing explains why they relented. Sadly, I can understand why this is happening. I understand that costs need to be cut, and there are some children on the spectrum that really don’t need intensive ABA therapy to survive. Look at me, I didn’t have any therapy until I was in my 30s, and while some behavioral therapy would have helped me a little bit, I would have been fine without it. I probably would have gotten more out of going to OT and perhaps some speech therapy. I even understand the utmost importance of doing parental grading and involvement. Why should the government spend hundreds of thousands of dollars on a child, when the parent just undoes everything at home? What bothers me about this whole thing is the underhandedness regarding it. And the sad fact that no other medical condition requires this. The outrage would palpable if we were to do this to diabetics– you don’t watch your diet, you don’t get insulin; or people who are morbidly obese. Yet why autistic kids? With the cuts in ABA therapy, cuts in respit care for both adults and children on the spectrum, and cuts in compounding pharmacy coverage– it just seems to me like they are attacking families on the spectrum. I don’t see them attacking my neighbor with cuts– she had breast augmentation surgery after breast cancer, and instead of a traditional implant, she got an expensive experimental implant grown out of her own tissue. While I think she should get implants, I don’t see her experimental boobies being more medically necessary than a child’s therapy. The military has an extremely high number of children on the autism spectrum– could be the environment in which they are born into, and the stress of being a military family, could be the type of people who join the military, or could be the stress of being a military wife. It just seems unfair to take away so much to such a large population when there are other places that desperately need cuts.
Day 89: July 30th, 2013
I worked hard today and went way beyond my comfort zone. A small surprise project is turning into an expensive, gut wrenching endeavor. Today, I removed 24- 50 pound concrete blocks from the garden. I was drenched in the 2 hours I spent doing the task, then I moved the border from inside my van to the end, installed the lighting, and started moving the rock from my car. Unfortunately, I accidentally left the gate open, and spent another few hours looking for Sadie. At this point during the day, I’m spent, absolutely physically and emotionally exhausted. I feel like I just ran a marathon. I hope tomorrow, I will have the energy enough to move the rock again. I would very much like to have this project done before I leave for Disney World, next Thursday.
Days 93-90: July 24th-July 28th, 2013
I bid my final farewell to an old life, that I didn’t like anyway. I mailed off my last Louis Vuitton bag. It is freeing in a way. I feel no longer tied to the old feelings towards my former friend. Letting go of that bag was like letting go of my friendship with her. I had no hard feelings about the bag, I didn’t care one way or another. And that’s the same way I feel about her– no hard feelings. I feel relieved, and I feel like I can move on with my life. I don’t think she is a bad person, I think that sometimes two people should not be friends because of they bring out the worst in each other.
The last four days, I finished one side of the landscaping project I started a few weeks ago. The rock is laid, I have new outdoor lighting. Unfortunately, the hardest part of the job is to come– the other two sides have become overgrown with weeds, and it’s going to be tough to clear it. Even though my parents have been somewhat of a help, my mom is starting to have negative lupus affects from the heat and sunlight, and cannot be outside more than an hour or so, and certainly not pulling rock or doing difficult landscaping. My dad can barely stand unassisted, plus he is busy pouting about some slight that I have no idea about.
It’s frustrating sometimes living with an elderly parent, and it is slightly reminiscent of the visit with my mother-in-law. He often behaves much like a 4-year-old. A prime example of this is when I make food. I make plenty of leftovers, which he says he will eat, then he doesn’t eat them the next day, and there’s no way the kids and I will eat all the leftovers, so my fridge is full of left overs that don’t get eaten, and I end up throwing away a good portion of food. Plus, also like my mother-in-law, he has to have his snacks in order for his world to be complete. I can offer him a nice variety of nutritious foods, and he goes for the salty snacks, or sweets. Then complains when he doesn’t feel well.
Day 94: July 23rd, 2013
I did it. It took days for me to decide, but I listed the last remnants of my former life. I listed the purse. I don’t know what I’m going to do with the money, but something more meaningful than a purse. Maybe a new computer, or some clothing for the kids, or money spent on a home improvement project. I want this purse to make someone else happy, it doesn’t bring fulfillment to my life anymore. It never really brought fulfillment to my life. It was someone else’s love, someone else’s passion– not mine. I can’t wait until I ship it off to its new home, and I can move on with my life, without the constant reminder of someone else.
Day 99-95: July 19th-July 22, 2013
I have come to a cross roads, and I need to make decision. It’s not a major life changing decision, yet it somewhat is. I have to decide if I want to “kill” the old me once and for all. I have written about my friend, who last year had “dumped” me as a part of a disagreement. Since the dumping, I have changed my e-mail, blocked her phone number, and have cut off all contact. There are two things that I still to this day have that are a part of her. Two Louis Vuittons, one a wallet and the other a purse. I am grappling with whether, or not, I should get rid of the purse. I used to like it, but I’m not sure if it’s me anymore. I’m not 100% certain that it’s me, or the extension of me that was trying to be like her. I don’t really want it anymore, because it reminds me of our friendship. Part of me wants to just forget about the friendship, dump the purse, and use the money to buy other, more meaningful things that are more “me.” Another part of me thinks I should keep the purse, because it does hold some sentimental value, yet I have other things to remind me of my trips overseas (other than a purse). My lifestyle doesn’t lend itself well to Louis Vuitton anymore. I’m not a yuppy, I don’t really care about outward appearances. The purse actually makes me uncomfortable, because I’m afraid it will be stolen. It’s cute, but it’s not really my style. The question is should I let my past die, or should I hold onto it as a vague $400 memory?
Day 100: July 18, 2013
Sometimes the smallest voices can make the biggest impact. The last two weeks families of 23,000 children on the autism spectrum united and fought. We didn’t fight the war our family members are fighting, or have fought. We fought a war for our children. June 25th, Tricare released its new policy, this policy would have nullified the authorizations of 23,000 military children, and made it damn near impossible for them to receive services. Today, Tricare backed down from its policy. Instead of affecting active duty families, the policy now only affects families of retirees, and only those retirees with newly diagnosed children on the autism spectrum. I was one of those voices. I wrote to congressmen, the President, and even Oprah, everyone I could think of to get our story out there. I spent hours, if not days at the computer, organizing a response to this growing concern. Then, without warning it came down from Tricare that we had won. It wasn’t an out and out victory, where they admitted that they were wrong, it was a kind of sort of victory, where the enemy tries to make you out to look like a pouting child in the corner. It doesn’t matter to me though, it was still a victory. In the end, my son will not lose his services, he will not lose his school, and I get the satisfaction knowing that I made a difference.
Now off to teach my daughter the important skill of cross stitching :)!
Day 101: July 17th, 2013
Today is a little more low key than yesterday. We had my husband’s unit over for lunch and they helped move my parents stuff from the POD into the garage and moved some of the furniture that I’m taking into my living room. I have rearranged some of the books I have and plan on getting rid of two book shelves at a garage sale. I know I won’t get much for them– they are particle board and have been through several military moves, but something is better than nothing. I’m also getting rid of a couch in the hopes of buying a new couch.
We decided to go down to Orlando over Labor Day weekend. My parents are going house hunting, and the kids and I are going to do “non” Disney park things, like go to Sea World, go mini golfing, and playing at the pool in whatever hotel we are staying in. Should be a nice little respit before the fun of a fall wedding and homecoming after school starts.
Day 102: July 16th, 2013
Yesterday we met with my son’s school. I feel much better about the entire Tricare situation than I did a few weeks ago. The school will provide the testing needed, the doctor will waive the two year limit on therapy, and whether or not we get Tricare authorization, my son will still be able to go to school. The only caveat without the authorization will be that it will be small groups of 2-3 children to one teacher, instead of the one-to-one he is receiving now, and we will have to pay tuition. I don’t mind paying tuition. He is not ready to return to school, and I don’t really want to send him to Rocky Bayou yet (because he is not ready to go there either). I’m relieved that this option is open to us.
Today we have a lot going on too. My parents stuff arrive yesterday morning, and we have a group of men and women from my husband’s unit to help me move the furniture I am receiving as compensation into the house. In addition, I am going to Pensacola with my son to test him for seizures by doing an ambulatory EEG, and tomorrow he has a sleep study. I’m excited about an upcoming trip to Disney World in August, and I also think we are going to Orlando over Labor Day to go house hunting with my parents. I’m not going to go house hunting, rather I’m going to tag along and just hang out at the hotel, go mini golfing with the kids, and going places in Orlando other than Disney– like we have a day pass for Sea World among other things.
Day 103: July 15th, 2013
It is now time to step back. I have done everything I could possibly do to stop the Tricare things from happening, and now it’s time to allow a higher power take over. It is in the hands of the politicians, the decision makers, and the chain of command. I only hope that they can see how detrimental this is. The thought of leaving the military in another 4 years makes me somewhat sad. This was the life I knew for 16 years, the life my husband loved for his time in service, but sadly, I really think it is a retention issue for the military. I just get the impression that they don’t want us anymore. No one asks for autism, it’s one of those things that is gift wrapped and set on your lap. It’s not like any parent knew that they were going to have a child with autism when they joined the service. Who would chose that? It’s like choosing to be a single parent with a child with autism. No one in their right mind would decide that. But it happens. Both autism and the military cause divorces, split families up, and change you– either for the better or the worse. I don’t think anyone would chose to have something rock your world like this does. Even being autistic (for lack of a better term), I don’t chose it. There are aspects of myself that I loathe. I sometimes hate the way I am, and the way I relate to people. I have to fight very hard “to be normal”, even though I don’t want to be normal, I know it’s what is best sometimes. I also don’t want to miscommunicate, I don’t want to see things in the absolute black and white, I don’t want to have the rigid rules of no chicken for two meals in a row, two days in a row, but it is what it is. I just feel like not only are we being blamed for how we are, and how our children are, but we are being thrown away by the United States like bad trash.
Jodi's Going 180 