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.

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.

If passed, this will also leave many spouses out in the cold. There is a large contingency of spouses who stay home for whatever their reasons are, and therefore don’t have enough working credits to qualify for Medicare at age 65. From what I’ve been hearing from spouses, there are many who want to work, but are unable to find jobs due to the nomadic lifestyle of the military in combination with the current economic situation of the country as a whole. So, the military could expand MyCAA, improve child care services (especially for those of us with special needs children), and other family programs that would support a two income family so these spouses can work and therefore qualify for Medicare at age 65. As I see it, it’s invest now or later in this case, and really, some of our family programs wouldn’t hurt from some more support now.

The current level of military operations is at a level none of us has experienced before. It’s taking a toll not only on our soldiers, but the families as well. The effects could be far reaching into old age, depending on the quality of care received now. I’d really hate to see Congress and the Pentagon cut these guys short now when the effects are still yet unknown. Let’s cut pork spending in the defense budget before we cut programs that directly affect the soldiers and their families. I know there are things in the defense budget like libraries with important people’s names on them that get slid in there that just don’t need to be. Trim that fat first. Then ask the soldiers, families, and retirees to tighten their belts even more than we already have in recent years.

Now, I know there are people who will disagree with me, and that’s fine, but let’s keep it respectful.

Cue my husband coming home from work. He printed out some paperwork that was emailed to him so I could have a copy for my records. It’s WRONG! No wonder I’m getting shit fits from EFMP and ECHO about getting services for my younger son. It’s all comepltely WRONG! One page says he needs no services, then the next says he needs speech, OT, and ABA (which THIS is what he needs). Then yet another page says he only needs a visit once a week. ONCE a week? That’s what he’s getting now through the local Intermediate Unit who handles the special needs kids and the services they need, and it’s NOT enough! GAH! But wait! Then yet another page didn’t even get sent. Then one with the signature of the EFMP coordinator. OH! OH! OH! And, no one from the pediatrician’s office bothered to send a copy of the neurologist’s report they’ve had since JANUARY. January. Are you kidding me?

The best is yet to come.I know we’re filling this out about autism, but there’s also a section about asthma. It says my son has NOT been treated in the last 5 years. Cue Linda Blair Psycho-ish head spinning and pea soup spewing. Um, then why do we have a nebulizer? Why do I have to check is pulse ox every time he gets a bad cough? Why does he see the allergist for allergies and – wait for it – ASTHMA? I get it. It’s more paperwork. You know what? Boofuckinghoo. I have a lot of paperwork I get that I have to fill out on these kids too. I do it, and I do it correctly. I don’t pass the buck because maybe I didn’t feel like it that day. Needless to say I immediately called Tricare and changed the kids to another doctor in our clinic who was recommended by the neurologist’s office, and is NOT the pediatrician. Unfortunately, I STILL have to deal with the pediatrician because it’s her office that all of the EFMP and ECHO paperwork goes through for our post so my kids can get services.

So now on top of dealing with all the health stuff I have going on personally, I have to clean up the mess this doctor has made for me. A special needs mom just doesn’t have time for professionals to not do their jobs correctly, but it seems like these are the people who like to screw up my days the most.

I’ve seen it first hand. There are at least three guys (including my husband) where he works who were/are getting the back shots. Why shots? Oh, that’s because Tricare only covers chiropractic care if you live near a MTF that offers it. At my last time of research, there were three in the country (for the Army). Instead of treating the actual issue, the Army health care system instead just sends the soldiers for treatments that mask the pain. A little preventative care would go a long way. Sure, these soldiers could go off post and pay out of pocket, but if they’re like my husband, they’re stubborn and adamant that “the Army did this, they can fix it and pay for it.”

So until Tricare covers preventative care like chiropractic on a large scale for those of us whose MTF clinics don’t offer it, they’re just masking symptoms in soldiers. This will only lead to further issues down the road that will need treated. Preventative care (and lightening solders’ loads) would save so much money long term instead of treating degenerative diseases and masking pain until these issues become degenerative to the point of no return.

We also have to look at the rates that current service members are paying. So, you can retire and pay $1,020.60 for your family, or you can stay in the Guard or Reserves, purchase the Tricare Reserve Select plan, and pay $197.65. Gee, let me think about that one for a minute. I think I’d rather pay $197.65 and stay in awhile longer if I can (I know not all soldiers of retirement age are able to stay).

Once again, Congress has screwed our Reserve Component families. Is anyone surprised? I’m not. This is their standard operating procedure (SOP).

*Rates from NGAUS.

I called our pediatrician’s office and let them know they needed to call and set up the appointment. They called me back about an hour later to say that it was in JULY. Um, it’s only April now. We have to wait another THREE AND A HALF MONTHS for his appointment.

What really pisses me off about the whole situation is that I wanted to talk to a nurse in the specialist’s office. I have some questions leading up to our appointment. They completely shut me, the minor patient’s mother, out of the loop. I’m not some hysterical mother. I’ve done my research, and I have some questions so that we get the most out of our appointment when we FINALLY get to go.

The hospital at Hershey already has one strike against them. They’ve shut the patient out of the process. I can’t see how that will lead to effective health care. I’ve heard they’re good, but so far, I’m not impressed.

Again, I can’t stress enough how SLOW health care can be. I took Aaron to the doctor THREE WEEKS ago with belly aches, diarrhea and vomiting that had already been persisting for about FOUR WEEKS, and had finally gotten to the point where it couldn’t be explained away by a virus. We’re already SEVEN WEEKS (almost TWO MONTHS) into this journey and we have another THREE AND A HALF MONTHS to go – minimum. And this is for a THREE YEAR OLD CHILD with a persistent mother.

I explained that since she mentioned possible celiac disease, we tried gluten free foods. The symptoms subsided drastically. Then when we added them back in, the poor little guy was back to puking his guts out, diarrhea everywhere, and a belly ache that he constantly begged for medicine (gripe water).

The doctor put in for a referral to the pediatric gastroenterologist. She said that where we live, it can take awhile, so if eating gluten free is helping my son, there’s no reason to make him suffer. Just keep doing what we’re doing until I get the referral paper (about two more weeks). She said for me to talk to the specialist’s office when I call for an appointment and let them advise me on what to do next since our system is so slow. That made me feel so much better. As a parent, I just could not allow my 3 year old to suffer another several weeks while we wait on the managed care system that is Tricare.

Now we’re back to hurry up and wait, but at least he’s not allergic to any foods, right?

Why aren’t we sure yet? We’re still waiting on the blood allergy tests. Yes, it was TWO WEEKS ago today that he had the blood drawn. Yes I’ve reported to the doctor that eliminating the gluten has made a difference, and when we add it back in the symptoms reappear. She still wants to wait on the bloodwork. THEN she will decide IF he needs a referral to a specialist. Once that happens, she will put in for a referral. It will then take Tricare TWO WEEKS to send us a paper saying this is the specialist you may call to get an appointment. Then, the specialist has about THIRTY DAYS to fit us into their schedule. Per my previous experiences. I’ve heard some specialists can take longer due to there not being as many and they have a higher demand of patients.

If I had not had the intelligence that when the doctor said she possibly suspected celiac disease to at least try to eliminate gluten, I’d STILL have a child puking and pooping everywhere during what is going to amount to about at least a TWO MONTH wait to get some concrete answers.

This is also a catch 22 situation. If we do get sent to a specialist, the tests they run to determine if he has celiac disease or not form what I’ve read will require him to have been eating gluten to be accurate. So I had to make a choice. I had to either wait it out and just let the system move at its molasses pace while my child suffered, or do what I could to make him feel better now. What would you choose? The only thing I can hope for is to get a doctor that will take into account that I had to do what was best for my child, and not wait on this slow managed care system.

Sure, people cite the old stigma argument. If I seek help it’ll hurt my spouse’s career as a soldier. We all need to get over that so those who need help can feel free to seek it without retribution.

For me, my pet peeve lies with Tricare. The behavioral health coverage for families is not as good as it could be If you’re a soldier with mental health issues, your care is paid for. If you’re a family member, you’re pretty much screwed. When my husband was deployed and a traditional Guardsman, we were still driving an hour each way (think gas money) and $100 per visit for our oldest son to see a child psychologist for his issues. This is with Tricare coverage. I shudder to think what it costs without coverage.

Even now as an active duty family we will have copays in relation to our son’s new diagnosis. I was reading the Tricare pamphlets online. While Autism is not the same as a person who’s at risk for suicide, we’re still talking behavioral health care coverage for our military families that is lacking.

While we do need to remove what stigma remains around seeking mental health help, the military also needs to make sure it’s affordable for the family members who need it. People are more likely to seek help if it doesn’t mean the choice between a doctor’s visit or groceries.