The 5yo needed his OT continued. I knew full well that we’d have ot find a new OT. The place where he was getting therapy only had a temporary therapist. One we waited 3 months for. One that waiting 3 months was perfectly acceptable to the Tricare people when I called initially. One that was an absolutely fantastic therapist, and I’m glad now to have waited for her because she taught me so much, but I found out had I gone to our Tricare office, they would have tried to find us someone with services sooner. I was still a little raw from someone in their office trying to refer us to the ABA provider for a psych eval for an official autism diagnosis, not one done by the school entity for kids ages 3-5 coughillegalcough.

This time, I wasn’t taking “months” or “we have an extensive wait list” for an answer. I’ve seen WAY too much progress for our son to regress. I can do some things at home, but not enough to be left hanging indefinitely. So I went from the post office to the Tricare office at our clinic. I spent a total of about 2 hours there. Two hours, 2 trips, and 2 very kind women who worked very hard to find us a provider that could provide proper services, and in a timely manner. I appreciate them more than they know.

It was suggested to me that I finally suck it up and do the Medicaid paperwork. Honestly, it wouldn’t matter. Medicaid wouldn’t magically make more providers appear that can provide OT to a 5yo with autism. Believe it or not, as broken as our current system is, the ladies in the Tricare office were just looking for ANYONE in the area that could help us. ANYONE. It didn’t matter at that point network, non network, green, purple, alien, just as long as they could provide OT to my son without us being on some indefinite wait list.

One of the ladies suggested that I write a nicely worded letter to the clinic commander about the difficulties we’ve had with the system since we’re here longer than most families. Most families here cycle in every July/August and cycle out in May/June. I told her about some of our providers who were fantastic. How hard it was to find some of them. And how hard it was to cobble together services. When I initially brought in the referral, they had no idea that the place here in town no longer had an OT. That the one they did have was temporary. So, I’m going to do just that. I am going to write that letter to the clinic commander about what we’ve gone through since we’ve been here. I’m mad and annoyed, but I’ve found enough kind and helpful people to keep me from truly losing my shit. If my letter can in any way help all of the other families with kids on the spectrum, even a smidge, then it’s worth it. I was told there are quite a few when I was in the Tricare office. I know from this journey of ours that started in January of 2010 that every bit of help matters, no matter how seemingly small to the person providing it.

This is just one more reason that if military families truly matter to our politicians as much as they say, then there needs to be measures to improve our Tricare health system, not gut it and charge us more.

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And The Band Plays On...Yes, We're SpecialSleep

We sat in the briefing, we listened to the data, and it was compelling. I was a little disappointed that they chose to talk about the Marine Corps EFM program. From what I’ve heard, they’ve got the best out of all of the services. It’s certainly not what we’ve experienced in the Army. I made sure to tell the staffer we were with from Senator Toomey’s office just that. We don’t have case managers at the MTF where we live. Last I checked, I cannot use the child care on post unless I also pay for a one on one assistant for my 5yo because they are not equipped to handle special needs children. Why would I pay for two simultaneous services? These are just two examples. You can also add that I’ve had to chase down EVERYTHING we have on my own. No one told me, oh yes, you go here to sign up for EFMP, and then we’ll sign you up for ECHO, and oh by the way, you can go to ACS and there’s another EFMP office there where you can see about getting respite care. Nope. I saw the posters on the wall at the clinic about EFMP and researched it and asked. I made an appointment and got us all signed up. BEFORE the kids were diagnosed with autism, thankfully. I’m gad we had other conditions that made us qualify. But then we signed up for EFMP and that was it. I had to ask about ECHO and ABA therapy. So that was another delay and paperwork. It was another YEAR before I found out about the ACS office and respite. I found that out through more research and asking our ABA provider about what I had found. I don’t know if this is just our post, but there is a SERIOUS lack of communication and dissemination of information to families.

Then we heard the personal stories of our fellow military families. I mean really, how could we add anything else to what they had said? Rachel talked about having to tell her husband while he was in a war zone that their daughter had autism. And oh by the way, Honey, you’ve served 25 distinguished years, but you can’t retire just yet, or our child can’t get the services she needs. And Karen hit the costs on the head. If a colonel’s family can’t do it, how can any family do it. She answered her own question. They’re not. That is why only 10% of families are getting services. Again, to repeat what I heard yesterday, I don’t know where 10% is considered a success rate. And really, I’m betting that 90% failure rate is even higher because retiree and reserve component families aren’t even eligible for services, so their numbers aren’t even counted. I’d be willing to bet that failure rate is more like 98% across the entire military. Think about that.   And have you ever heard someone say they were glad to have lung cancer? I did yesterday. Why? because it means Scott is still active duty and his son still gets the services he needs. The cancer was found during Scott’s retirement physical. What are the odds? I can’t even imagine what that emotional roller coaster is like.

I mean really, they covered it all. The obstacles we face in getting services in the first place, the costs we pay even after what Tricare will cover, and the fact that our soldiers simply cannot retire until the Army says, “That’s it, we can’t keep you anymore.” We ALL stare down the fear every day of an injury, or even worse, suddenly wiping services our kids desperately need away. No soldier going into combat needs to worry about any of this, but that is what is happening. I know there’s a lot of talk about what we signed up for. Well, I can tell you that pre 9-11, and I’m betting post 9-11 too, these soldiers signed up under the promise that when the shit hit the fan, they and their families would be taken care of, but that simply is not happening, and has not been happening.

After the Congressional staffers heard all of the data and stories yesterday, they got to go back to their lives. Their probably pretty simple lives. I can tell you what we went back to. The car ride home was full of autism because the boys used their ability to behave as society wants them to in the briefing. We were all exhausted. We were up early. We walked a lot since we parked by Union Station thinking that would be the only parking we’d find anywhere near the Capitol. My fibromyalgia is flaring so badly, the muscles in my hands ache. Our 5yo was still awake at 5:30am this morning. My husband was up at 4:45am so he could be dressed and to work on time for PT with the cadets. Our 10yo completed the work he missed from school last night, and will be up early to go back to his routine today. We have ABA therapy scheduled this week. We’re on a break from OT due to lack of a therapist for what we are told will be months before they will be able to find a new one. We still have a leaky roof that needs resolving. I’ve got a Kindergarten transition meeting to prepare for on Friday, and a middle school transition to call about since no one has called me back. Our complicated lives of therapy, doctor appointments, and the Army continue while the fate of how much support we get is now in the fate of Congress. We will now see if military families are truly as important as they say we are.

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Yes, We're SpecialFridayMilitary News Roundup - July 31, 2011

The Iraqi War came to an end last month and our troops did an amazing job liberating the country and putting an end to Saddam’s reign. During the course of the war, nearly 5,000 U.S. soldiers gave the ultimate sacrifice. It is important to constantly remember and honor our troops. You may have known someone who lost their life while fighting for their country, but you may not know where they are buried. There are over 6 million veterans buried across the U.S. locating a veteran grave can be a challenge. It is now possible to find a veteran grave for free with LocateGrave.org



Users can search for a veteran by name, cemetery, date of birth, military rank and military branch. Once you have located the veteran you are looking for, click on their name to see the detailed information regarding their burial. A map will help you locate the cemetery and the cemetery’s phone number will be displayed. You can also leave a prayer or note to remember the veteran.

A similar online tool also powered by FindTheData.org is the Medal of Honor Recipients database. Like the veteran grave locator, the Medal of Honor tool allows you to search for recipients based on war, rank and name.

This is a guest post written by Evan Thomas, a student at UC Santa Barbara. He is also working on a military colleges comparison and a war statistics site. If you have any questions or comments about the grave locator, feel free to contact Evan at evan_thomas (@) umail.ucsb.edu

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The Iraqi War came to...

When we first started in our married life, the roles were expected. It didn’t matter that I was a new spouse despite the fact that my husband was a seasoned soldier. It didn’t matter that we had a newborn, and that I had health issues of my own. I was expected to take a leadership role in volunteering. So I tried. Our FRG (Family Readiness Group) at the time was run by one person for the whole battalion. Yes, ONE PERSON for the BATTALION. She would complain about how much work it was and how she needed help and how no one would volunteer. Well, I did. Ultimately, the plan was that under her help and mentorship, I was to take charge of the FRG for our company (per BN commander). Well, this did not sit well with this woman. She obviously relished in her complaining. She wanted to be the sole person in charge for the battalion, complain, and look the role of a martyr. After a few months, I gave up, told the BN commander exactly what was going on and if she wanted more volunteers she needed to get rid of that woman because it was never going to happen while she was in charge because she wasn’t interested in actual help, just the illusion that she wanted it.

Fast forward to deployment. My husband got pulled from his unit to go with another. We were three hours from the unit and living in a different state. I made sure they had all of my contact information. There was supposedly a FRG, but I never heard of any events beyond the homecoming briefings right before the unit came home. If we needed anything, trying to get in contact with the unit POC was also a ridiculous process as my husband had some issues with paperwork while he was gone. If it wasn’t for his co-workers, who were all military, where we lived, and the friends I made with other parents while my oldest was in preschool, I would’ve had zero support during that deployment. I felt like I had zero unit support. I feel like the FRG wasn’t successful because the spouses didn’t want involved. I wanted to be as involved as I could be with a small child 3 hours away.

Talking to spouses before the deployment, so many of them hadn’t been away from their husband except for the yearly AT. That’s usually only two weeks. Some didn’t even want listed on the phone tree. Some were only at the pre-deployment briefings because it was mandatory, but otherwise wanted nothing to do with the military aspect of their soldier’s life. Being a Guard family can be unique like that. There are some spouses who don’t want to be identified as a military spouse in any way, and who want nothing to do with the military part of their lives. Some only wanted a phone call when the unit was coming home. Maybe I’m different, but I can’t imagine being out of the loop like that.

Now, these volunteer positions seem to be more voluntary. For that I’m glad. Since deployment, we’ve expanded our family, and both boys have special needs. I have health issues of my own. The days where I am able to volunteer and help don’t always mesh with what’s available. Sometimes I need those days to catch up on things around the house. We can’t do it all, and for those who seem to, I salute you.

Meeting other military spouses online has been great for me. I can converse when I have the chance. I can easily meet other spouses with common interests. I don’t know if I’ve mentored any of them, but I know some have mentored me whether they realize it or not.

What is not mentoring another spouse is ganging up on them in social media and calling them a whiner, a Debbie Downer, and telling them that they’re just blaming others when they bring to light real issues that have happened to them. Maybe instead of the name calling, we should look at why such issues are happening. Just because someone has a different experience from yours doesn’t mean that it’s not valid. Not everyone will have the same experiences.

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Military Support #sendCheerYou Knew What You Signed Up ForVeteran's Day 2011 - Month of the Military Family

We will not let CMKAA H.R. 2288 die in committee. Failure is just not an option. Seriously. Do you think that a soldier who is deploying and has children on the autism spectrum should have the added stress that if something should happen and that soldier ends up medically discharged, their kids will lose autism services the way our health insurance currently has them set up? It’s also what keeps the spouse at home awake at night along with the usual deployment stress. Repeat after me, retirement (of any kind) = no autism services. 

Why are military kids different? Because they have a parent willing to die in service to this country. Can you say the same for yourself? Can you take the time to click on your computer and support that family who chose service?

Do you think the military and its health insurance is wonderful? Please, feel free to see your local recruiter and join the ranks of the rest of us military families. I can tell you there are good people and not so good people in our system. Everything I have found for our boys I have dug for and asked about. Not one person has been forthcoming about any of it. And no, we don’t have case managers here.

For the military folks, yes, we know about EFMP and ECHO. We know that EFMP in theory is supposed to keep the family together and only move you to where you can get services for your children. In the best case scenario, you all move together, but you still have to start at the bottom of all of the wait lists to get back into therapies. In some cases, that’s 6 months. That’s 6 mos for your child to regress, despite your best efforts to keep up therapies at home. This can also mean the soldier moves without the family and becomes a geographic bachelor while the family stays behind. We all know the saying, “The needs of the Army/Navy/Marines/Air Force/Coast Guard…”

The ONLY military kids who are receiving any autism services are those of active duty members. Our reserve components and retirees are excluded even though they pay for Tricare coverage like we do. Yes, that’s right, the soldiers pay to have their family members covered. It’s only free for the soldiers. 

Don’t forget to exercise your right to express your opinion and tell your congressperson how important this bill is.

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FridayAnd The Band Plays On...

Before Images (Really after supposed fix #1 but it was still leaking):

Note flipped up and buckled shingles

Left side of dormer

Right side of dormer (supposedly fixed remember)

Front of dormer. (Note: flashing)

I’m guessing my roof was fixed again yesterday. I’m not sure since no one has communicated with me. The maintenance supervisor and a roofing contractor showed up, got up on the roof, there was some banging, and they left. It was obvious I was home since my front door was wide open, and my 5yo opened the back door to see what they were doing. I heard the roofer say something to the effect of “Well, if the wind didn’t get to it…” I stood in my kitchen thinking, “No, if you’d fix it right instead of just patching it and hoping it works…”  OK, and maybe there were some expletives in my head too at this point. My bullshit tolerance has been reached.

If this was my house that I owned, this would be totally unacceptable. I can’t believe Balfour Beatty is allowed to do this to our military families, and we have to pay them every month to live here. I think military housing needs to go back to the military. This isn’t the first issue we’ve had with them where something can’t get fixed right. See: Furnace, February 2009.

I’ve called everyone I can call, and no one is returning calls. I was nice, and I’ve done things the “right” way, and now I’m going to go to who gets results. We’re on month five. FIVE MONTHS. Can you say ridiculous?

This is what they did yesterday:

The white goop is the "fix." Note the flashing still. And nothing else was done.

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(Almost)Wordless Wednesday - Leaky Ceiling Edition

I wouldn’t tell a fellow autism parent (or any special needs parent) on a bad day, “Well, you knew what you were getting into by having a child.”

I wouldn’t tell another service worker (doctor, police, fire, EMT, etc.), “You knew what you signed up for.”

I wouldn’t tell the married couple who’s divorcing for whatever reason, “Well, You should’ve seen this coming by getting married.”

I wouldn’t tell the woman with breast cancer, “Well, you knew what would happen having breasts and all.”

I wouldn’t tell a man with testicular cancer, “Well, you knew what would happen having testicals.”

I think you get the point. Honestly, for those of us who have been married past the 11 year mark, we didn’t know. We had an idea, but unless you’re a spouse who was around for WWII, Korea, or Vietnam, I don’t think you truly had an understanding of what the current climate and OPTEMPO was going to entail.

This is especially true of our Guard families. Our Guard soldiers haven’t been deployed this much since WWII. I can tell you from experience that many Guard spouses think their husbands just go off and “play Army” one weekend a month, and that was it. It was extra income, their husband was off doing something he thought was fun, and that was that. Then shit got real. Very real. Families didn’t know how to cope. Families still don’t know how to cope as soldiers come home different people whether their wounds are visible or not.

So please, let’s all be a little kinder to each other. Let’s give each other the benefit of the doubt that it’s a bad day/week/month, whatever, but it’s temporary. If you see a spouse that perpetually complains, say something – privately. Ask them if they’re OK. Just maybe all of that complaining is a cry for help. Help that many of us find so very hard to come right out and ask for. Your compassion could be the difference in that person’s whole week for all you know.

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Military Support #sendCheerWhat is Military Spouse Mentorship?And The Band Plays On...

For my participation in the campaign, I bought TEN boxes to spread cheer. One for my family to cut out the postcard to send to another military family, and the other NINE boxes to spread some more cheer. But what to do with the other nine boxes?

Display at Walmart was fairly picked over.

Wait! College students! College students are typically on a VERY tight budget. My husband is an Army ROTC instructor, so we spread our cheer by offering the other nine boxes to any cadet who needed them. I figure the effect is two fold. We’re not only helping out people who can use it, but the cadets are a good group. I think they’ll be likely to cut out the cards and send them to military families and keep the cheer going. They too will be soldiers if they commission.

Our postcard all cut out.

With our box, we cut out the postcard to send (of course!). I wrote the message as dictated by my 10 year old since I write the smallest. Then we took it to the post office to the post office to mail. Plus the boys like saying hi to our postmaster.

How are you spreading cheer this holiday season?

*This post has been compensated as part of a sponsored charitable opportunity for Collective Bias. All opinions are always my own.

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Military Support #sendCheerVeteran's Day 2011 - Month of the Military FamilyA Second Fibromyalgia Opinion

I saw as our nation moved into a deep sense of patriotism. When people found out my husband is a soldier, we were thanked for his service. It’s nice to have people at least acknowledge that thanks is a nice thing to do even if they don’t really understand.

Over the years, support has waned. Soldiers and spouses have made no bones about speaking up about a broken system. We’re told we should just be thankful for what we have. You know what? I AM thankful for what I have, but that doesn’t mean that I shouldn’t try to leave the system better than i found it. Not only for my family, but those who follow us.

There are a lot of misconceptions about what military families get paid. A common belief is that we get “everything” for free. I have been told that being in the military is nothing but glorified welfare. Little do they know that (at least in our case) we do pay for uniforms, boots, the upkeep of the uniforms, the stuff that goes on the uniforms, medical care, glasses (only free for soldiers), dental (cost share for families), groceries (BAS is for the soldier, not the family), and housing. Yes, we get a housing allowance, or BAQ, but many landlords know what the going rate is for the area, and tend to make the rents at least that high. BAQ should cover rent AND utilities. This rarely works out that way.

Then there are those of us with special family members. We call them EFMs, or Exceptional Family Members. We have two in our family. Both boys qualify for both being autistic and asthmatic. Mostly the autism.

This life isn’t for everyone. I suppose that’s why not everyone does it. I’m thankful for the volunteers we do have so there isn’t a draft. While my own boys wouldn’t medically qualify, I can think of many others I’d not want to see go off to war in a draft. I’m glad there are men and women like my husband who get up every day and love what they do.

I’m glad there are people in the general public who still care. The ones who still give that knowing nod when we’re out and my husband is still in ACUs from work.

You know who else gets that military families need some support right now? Cheerios and the USO. Have you seen the Send Cheer ads on TV? In your newspaper? No? Check this out. Cheerios has a website dedicated to sending cheer to military families. Look for specially marked boxes of Cheerios at your local Walmart, and more information here. I’ll be writing another blog post about how my family is sending cheer to other military families. I can’t tell you how honored I am to be a part this awesome Cheerios sendCheer campaign.

*This post has been compensated as part of a sponsored charitable opportunity for Collective Bias. As always, all opinions are my own.