So, then why is it that the two Senators from Pennsyvania sent staffers to the briefing last Tuesday, but when I wrote to Rep. Bill Shuster, who is our representative, I got a rather spammy canned letter in return that was more concerned about the budget. Yes, I understand funding would be an issue, but we’re talking about people. Families. The military families that politicians have deemed so important. We have Joining Forces and the Army Family Covenant. Where are they in all of this? I don’t see them, do you?

Why am I singling out Rep. Shuster? Because Carlisle Barracks falls in his district. He is supposed to be representing military families. We have a VERY high retiree population in this area. One of the very groups that CMKAA would benefit. The PA ARNG Headquarters is at Ft. Indiantown Gap, PA. NOt in his district, but I know there are soldiers that live on post here who work there. Soldiers I’m sure who live in the district who drill there as well. Probably soldiers who would also benefit from CMKAA.

Again, why single out Rep. Shuster? He is ON THE HOUSE ARMED FORCES COMMITTEE. He is ON THE HOUSE ARMED FORCES SUBCOMMITTEE ON MILITARY PERSONNEL. He is NOT a co-sponsor of CMKAA H.R. 2288.

As a voting member of his district, I find this appalling. As a voting member of his district who is a military spouse I find this appalling. As a voting member of his district who is a military spouse with two children on the autism spectrum I find this appalling. As a voting member of his district who is a military spouse with two children on the autism spectrum and my family took the time to go to the briefing in DC and he did not, I find this ABHORRENT.

I know where MY vote will be cast when he’s up for re-election, and at this point, it’s not for a US House Representative who is on the House Armed Forces Committee and Subcommittee on Military Personnel and does NOT support the very military personnel he represents.

You can also check to see if your Representative is a cosponsor of CMKAA H.R. 2288. You can also write them and tell them why they should support this bill. No member of our military should have to worry about if their child has proper care. In the words of Karen Driscoll from Tuesday’s briefing, “If my son had brain cancer, coverage would not be an issue.” It’s true. If our children had cancer, everything would be paid for without the hoops we currently jump through. Because we’re fighting AUTISM, someone has decided they can pick and choose who gets treatment and who doesn’t. Tell me where the morality is in that.

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.

My husband gets home from work. He knows by my state of dress (true pajamas, not even yoga pants) that it’s a bad day. I’m laying on the couch tweeting from my phone because I’m letting the 5yo play Mario Kart just so I can rest a bit. My husband knows that I’m most likely not cooking dinner before he even asks. The question then remains, does he cook? Do we get take out? Or do we just go somewhere that has a kids’ night?

Often we opt for take out. There is a hoagie shop that one time I lost the dance, I clocked the mileage at 0.6 miles from our house. I had to laugh when I found out how far it is from the house because we often end up playing rock, paper, scissors to decide who goes to get the food. If I’m really feeling that poorly, my husband will just go. I’ve been fortunate to not have too many of those days lately, but at the same time it means that I have to negotiate to be the one to stay home.

0.6 miles. That’s our hoagie dance. What kind of dance do you share?

This feeling of the unknown also carries over to Kindergarten. Our younger son is transitioning from preschool to Kindergarten. I think the biggest challenge (besides getting the accommodations he needs) is to get the school to see past the autism to see the bright and sweet boy he is. He’s going to need challenged, or he’ll find his own way to stay entertained. It’s going to be interesting. Add to that his multiple food allergies, and this mama is just a tad freaked.

I was OK with the food allergies while the symptoms were all GI. We were out in public a few weeks ago, and the 5yo had a contact reaction. We were at an indoor play place. There were three birthday parties going on while we were there. There were children with food on the play apparatus. I have no idea what caused the reaction. The school serves peanut butter and jelly every day as one of the lunch choices. Elementary kids are not clean little people. So they could have a peanut free table for our son until the cows come home, but that doesn’t eliminate the threat of a kid who had one of his allergens on their hands and then left residue in the bathroom, on a door knob, or elsewhere in the classroom. Even if they have the kids wash their hands, unless the teacher is going to inspect every set of hands, I’m worried about another contact reaction. Peanut butter doesn’t always come off with a regular hand washing if it gets stuck in your cuticles or under the nails, as I’ve learned when I have baked with it in the past. And a citrus fruit allergy. There is citrus fruit in place you’d not thing it would be. Is everyone going to read labels, check for may contains? So many uncertains.

From what I’ve gathered so far, there is no formal process for middle school transitions. I need to get on this because we need to know what building my older child will be in next year so when we write his IEP this Spring, we can write an appropriate IEP. Otherwise, I”m going to have to pull everyone in next September.

For Kindergarten, I’m going to have to see what the school feels falls under FAPE. What do they feel is the least restrictive environment? Can they accommodate my child’s needs so he can be the most successful student he can be?

These are just a couple of the things that keep me awake at night.

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.

I’ll start with Zach, my Aspie. He’s currently a 5th grader.

A. Tools/Assistive Devices: Zach has fidgets and a chewy of his choice written into his IEP (I will be pushing harder for more socially acceptable gum as he transitions to middle school next year). This is the first year he hasn’t really utilized either, but he has expressed that he’d prefer to chew gum like he was allowed in a previous school in 2nd grade. It was a class wide thing his teacher did when the class did writing prompts that he found helped him. This school wouldn’t allow it though despite the research proven it helps kids concentrate.

He has a notebook to write down thoughts instead of blurting them out in class. Also to draw and doodle because it helps him listen when the teacher is talking, and it gives him something constructive to do when he’s done with his work.

A checklist of what needs to come home every day on his desk.

This year’s teacher puts homework online, and she has gone the extra mile to put the spelling words for the week online with the homework since we have an issue with “forgetting” the list. I think it’s more because spelling is really easy for Zach and he finds the homework part tedious.

When there is a substitute, someone from the office checks in periodically. We’ve had issues with subs not having control of the class, and Zach will try to resolve an issue on his own when adults won’t intervene, and not always in an appropriate manner.

He is not to miss more than 5 minutes of recess for any reason. If it’s absolutely necessary that he miss recess, he may walk or jog around the perimeter of the playground, but there MUST be physical activity or he can’t settle to concentrate.

B. Services: We’re fortunate enough to get ABA therapy both through the school and our insurance. He gets about an hour a week through the school and about 2-4 hours a week depending on what we feel is necessary privately either in school and/or at home.

Aaron is 5 and currently in preschool. He is dx’d as “low functioning autism, but verbal.”

A. Tools/Assistive Devices: Aaron currently doesn’t really have a lot in this area currently, but we will be asking for A LOT for Kindergarten. His current class is about 15 kids to 4 adults. The environment will drastically change with 30 kids to 2 adults next year. Aaron does have an iPad that we use at home, and his speech therapist has used as a positive reinforcer and as a therapy tool.

B. Services: I’m going to group these by at school and outside of school. At school Aaron gets OT and speech therapies. His IEP says 1 hour per month of each. Yes, per MONTH. Ridiculous, I know, and I’ve been told, that’s about what I can expect anywhere. However, I think he currently gets a bit more since his classroom is set up in a way that both are integrated into his time in class. So, if the SLP is working with one child, and that child is conversing with Aaron, she’s also going to prompt him to interact appropriately. Both of the school therapists have been eager to continue what we’re doing privately.

Private OT – Aaron has made HUGE strides. His focus and our ability to help him calm using the sensory techniques the OT has taught us have been awesome. A 170 improvement from where we were. My complaint is that she was temporary and the facility won’t have another pediatric OT for months. Activities we have done in OT are practicing buttons, tying shoes, playdoh, putty, picking up beans and beads with tweezers, writing, flicking paper footballs, cutting with scissors, rice container, bean container, bead container, swing, brushing, joint compressions, tunnel play, drawing, coloring, mazes, dot to dots, lots and lots of writing and hand work. Aaron went into therapy using both hands. We had to choose a hand for him to write with based on which one was stronger. We went for 1 1/2 to 2 hours a week depending on what was open as far as sessions from August until January while they had a therapist for Aaron.

Private Speech Therapy – 30min-1hr a week. It depends on the schedule and how well Aaron is in a groove. Our therapist lets him set the pace which I like. She still  pushes, but knows when enough is enough. She also works with the school district, so I’m hoping for continuity of care when he starts Kindergarten next year. Aaron has worked on time of day- day vs. night, describing objects beyond shape, color and number, answering WH- questions, following multi-step instructions, describing a scene, and conversing for more than just a few turns, and ending the interaction appropriately instead of just stopping or walking away. The WH- questions has been huge.

ABA therapy – All privately provided by our insurance currently. Aaron gets roughly 4-5 hours per week at school and home. One day a week is at school, and one is at home since he currently only attends preschool 2 days per week.

Next up, me and the 10yo. The 10yo is still having allergy symptoms despite still being on meds and going through the series of allergy shots. I didn’t spend five years of my time for the poor child to still be doing the “allergy salute.” I’ve been having some issues as well, so I figure since eosinophilic esophagitis (EE) is generally thought to be hereditary, it probably comes from me.

Prior to this, the only family history we had with foods was mine and the 10yo’s lactose intolerance. This has been two years in the making. Later this month, we see GI for our regular three month follow up and to discuss a rescope.

What can you take from this? If you’re going through allergy testing, don’t be discouraged. Patch and blood testing, and biopsies showed nothing except eosinophils. It wasn’t until I pushed for prick testing that we got any results. If you have a hunch something is up, keep at it until you’ve exhausted all of your options.

I’ve been wanting a second opinion on my fibromyalgia for awhile, but rheumatologists that will accept my insruance in this area are few and far between. When I got a referral to one two years ago, there was only one practice, out of two, that was even accepting new patients.

After I obtained my referral, drove an hour, found the doctor’s office, I was dismissed as a tired mom that just needed a sleep study. Wait? What? That’s IT? I was highly disappointed. Mostly I was disappointed at how quickly I was dismissed, and a sleep study was totally out of the question at that point. My youngest child would not go to bed without me being home. Not.at.all.

So I never got the sleep study. Since then, I’ve seen an endocrinologist who saw me for my thyroid. It’s pretty enlarged. He was also pretty dismissive. I got the “Yep, it’s enlarged, nothing looks cancerous, and you need a sleep study.” Wait? What? But I don’t snore. Not since I had my tonsils out.

Now two doctors have dismissed my increasing pain and muscle spasms as being related to not sleeping well and I need a sleep study. I became convinced that this was just their new diagnostic toy. Not only that, but I’m not sure how accurate a sleep study will be since I’ll freely admit I’m a chicken. Too chicken to get my deviated septum fixed.

Enter the chance to test drive 2nd.MD. I thought, what could it hurt? I mean, what’s the worst that would happen? I’d get told I need a sleep study? It turns out, that’s exactly what happened, but not in the condescending manner as I’ve previously experienced. The rheumatologist I conversed with didn’t treat me like I was dumb, but rather that I actually had a brain I was capable of using. It was a nice change of pace. He also suggested I get my vitamin D level checked.

So, I guess I need to get over my fear of my previous nose surgery and get the work done on my nose that was suggested to me eight years ago. Back then I was told even then I may only gain 30% usage of my right nostril the way the anatomy of my nose is, but who knows what procedures and technology are out there now. Then I’ll have that sleep study, but I don’t see the point of it when I know my nose needs work whether I’m actively snoring now or not.

With 2nd.MD, you can ask a doctor if they think they can help you before you try to book an appointment with them, which is nice. You can also search for a doctor by symptom or by specialty. If you don’t have a web cam, it’s OK, you can request your consult by phone. There are a lot of options available, and I think it’s a great resource for second opinions when you already have test results and blood work in your possession. I do wish there were more daytime hours for those of us who stay home so that I could do my appointment while my family was at work and school instead of hiding in the bedroom while my husband tried to keep the kids downstairs.

Thank you again to 2nd.MD for sponsoring this blog post. Please click here to learn more about 2nd.MD. I was selected for this sponsorship by the Clever Girls Collective. All opinions are my own. #Clever2ndMD #spon

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.

When I talk to my friends who have kids that aren’t on the spectrum, the same sort of comraderie about the full moon just isn’t there. They claim their children don’t act any differently that week. So what makes our kids so absolutely crazy that one week each month? They must be werewolves? Right? That’s got to be it. I know, I know. There’s probably something scientific about the magnetic pull of the moon, etc., but werewolf is way more fun, isn’t it?

This monthly craziness made me totally identify with fellow author Kerry Ann Butler in Wit and Wisdom From the Parents of Special Needs Kids. Kerry Ann talks about how her son seems out of control during the time of the full moon.

The tribe has a choice name for her [the full moon] as well, but I will let you use your imagination for what we call her. I will give you a hint: she is as old as her profession. She is the reason my sweet boy will wake up at 2:00am laughing at her and then me because I actually say, “Go back to sleep. It’s still nighttime.”There is no time for sleeping when the moon is full and BSC-time [batshitcrazy] is to be had.

What I find absolutely awesome is that the professionals that work with Kerry Ann’s son get it too. They don’t look at her like she’s crazy when she mentions this particular phase of the moon.

*If you’d like to read more from Kerry Ann Butler, she can be found as co-author with her husband Paul at The Butler Way.