Sleep was elusive last night. According to the sleep diary I have to keep for two weeks, I did sleep for four hours, but they were in sixty to ninety minute increments, broken up but hours of sleeplessness.

The morning routine starts. I get up and get my tea. The younger son shortly follows, as does my husband. There’s a little body with a big belly that needs breakfast. Then another breakfast.

Three hours of therapy. Thankfully they’re in house and I the heaviest piece of machinery I have to operate is the Keurig. ABA is up first. We discuss the boys’ Vineland scores. Nothing like starting a weary day with a double kick to the gut. Then they’re off to work on some school work. At least I get a reprieve from using my brain cells for now.

ABA is up first. We discuss the boys’ Vineland scores. Nothing like starting the day with a double gut kick. At least they’re working on school work today so my brain cells can still rest awhile.

Speech follows. I’ve made copies of the Vineland for her, and to put with the boys’ IEPs that I still need to sign and return. I agree with them, they just got lost in the great paperwork shuffle that is the end of the school year.

Copies made, IEPs signed, envelopes stuffed and sealed. The post office is only open until 2pm for me to mail the paperwork. Who has the energy for that today? I’m barely staying awake writing this. Besides, it’s raining outside. The boys won’t want to walk, and frankly, I’m in no shape to be driving anywhere.

Phone calls made and returned. Notes made before I dial so I don’t forget what I’d like to talk about. It’s a Van Wilder day – “Write that down.”

Lunch. Now. Make the oven magically heat up NOW. My little Veruca in training (despite my best efforts to the contrary) demands pizza. I daydream about the days when I’m the one crapping my pants and he’s wiping my ass and I’m the one demanding pizza. Oh yeah, the Vineland scores. I’m going to go eat some chocolate and wallow now. See you another day.

Sure, you may say the brick and mortar schools care. Suuuurrrreeeeee. Riiiiigggghhhhtttt. The same type of schools that tell me that they don’t have an OT, so they won’t evaluate my son? The same schools that tell me that my son is performing “fine” academically so there’s no need to run a speech evaluation? The same schools that said, “Well he (my son) navigates the school building just fine, so he can navigate his way home from the bus stop (across 3 streets with on crossing guards) just fine too.” You know, these same schools that understand autism and all that goes with it so incredibly well.

These same schools that can’t grasp contact food allergies. These same schools that don’t want students to self carry asthma inhalers and Epipens, but want to keep them locked in the nurse’s office. Medications that seconds count in their administration.

These same schools where I live in the Intermediate Unit ranked third in most due process cases in our state. We were one of them last year because they’re so ignorant.

These same schools that cry that their budgets are soooooooooo strapped because parents are pulling their kids in favor of the cyber charters. They can’t possibly afford to pay their share under the current formula anymore. You know, they can’t afford to pay their share for students that AREN’T EVEN PHYSICALLY ATTENDING THEIR SCHOOLS OR USING THEIR FACILITIES, but yet, that they get funding for these children. They *whine* can’t afford to pay their share because the cyber charters are *gasp* properly educating our children.

My children were properly evaluated this year. It was determined that my older son who didn’t need evaluated because his academics were “fine,” is grossly deficient in speech. In fact, my sixth grader scored significantly lower in core language than his brother in Kindergarten. Just to give you a frame of reference.

My children were educated this year, and not just taught to some state test (Which you can opt out of, by the way. Did you know that?). My children have thrived emotionally because there is no bullying here. There are plenty of sensory breaks. There is plenty of physical education. There is plenty of health education. Their emotional health and well being is taken care of as well as their education that comes from books. They have grown and improved by leaps and bounds. My children are thriving like they never have before.

My children have had experiences that never would be afforded them in a brick and mortar school. Not the one who wanted to write off the younger child as intellectually disabled. The child who, it turns out, has a gifted IQ. All because he’d need a 1:1 because of how his autism affects him. Sad on their part.

Excuse me if I have no sympathy for these schools who are crying poor because they say they can’t pay the cyber school formula for children who aren’t even attending their schools. Children whose parents have afforded them what is a better educational opportunity for their family. If the school districts want to step up and properly follow FAPE and IDEA without parents getting lawyers and filing due process, maybe I’d feel a little more empathy, but until that changes, I just don’t.

I also FINALLY got my doctor to test more than my TSH on my thyroid. coincidentally, it’s almost hyper instead of subclinical hypo like it was this time last year. Funny that. It’s because I have Hashimoto’s. Too bad my doctor’s method of treatment is to wait for the thyroid to burn out. I’m trying to figure out a way to actually be treated properly. From the research I’ve been doing, I’ve had symptoms since high school, and this is probably the reason for my health issues the last decade.

Now I get to figure out how to not only cook peanut, tree nut, citrus fruit, sesame, and shellfish free, but also gluten free and FODMAP free as well. Oh, and avoid goitrogenic foods. Thankfully there’s a lot of overlap in my restrictions, but unfortunately a lot of the recipes use nuts or suggest nuts for a snack. We don’t have nuts in the house since the little one has contact allergies. I never thought I’d say this living with three boys, but I miss nuts.

We’re also in that six month phase where all the doctor check ups are due with this specialist and that, and I need to renew ALL THE REFERRALS. And then I have to find a way to schedule ALL THE APPOINTMENTS. It would be awesome if medical professionals and therapists in our area wanted to work on Fridays, but they have this aversion to it, so I find myself trying to schedule everything Monday-Thursday. Classes are also Monday-Thursday, so I’m trying to schedule around classes. Thankfully most of the therapists come to us, but still. Looking at my calendar makes me tired. I’ll be glad for summer when at least the school stuff falls off the schedule.

In out infinite wisdom, the day before Easter, we woke up and I said, “It’s Saturday! It’s gorgeous! The snow is finally gone! Let’s get out of this house!” My husband said, “What are we going to do?” I said, “You pick. You’re driving. We can go ride the trains (Strasburg), or we can go to Chocolate World (Hershey). Aaron’s been asking to do both for months, but it’s been too cold or we haven’t had time.”

Chocolate World it was. THE DAY BEFORE EASTER. The best part is we didn’t even realize our mistake until we got there and the line to get in was backed up. Then we discovered the parking lot was torn up for renovations. THE DAY BEFORE EASTER.

Oh, and both of our boys are autistic. I have some pretty heavy sensory issues of my own. Even my husband could only handle the ride, and then after a minute of trying to look to see if he wanted any candy before we left (I had taken Aaron potty and found a quiet place to hide), he comes to me and says, “Even I am sensory overloaded. Let’s get out of here.” So we did. And we came back towards home and had a quiet lunch out.

Then we let the boys talk us into Toys R Us to spend their Easter money THE DAY BEFORE EASTER. While not crowded to Chocolate World proportions, it was crowded at “let’s get out on a nice Saturday afternoon” levels.

You would think at some point we would learn.

This April I am all too aware of autism. I don’t need an awareness month. We had a good year last year. We dropped two specialists from our team. We were mostly at the doctor for routine checkups. We stepped down appointments with another specialist, and attempted to do the same with one more. Now it seems like we’re back to constantly being at one doctor or another, and each appointment yields two or three more. More tests. More therapy. More. More. More. GAH!

I don’t want my children to have their childhood memories to be of doctor appointments and endless therapies. At the same time, this is all necessary to their health and development. I can’t help but get lost in the “what ifs” sometimes where what if the doctors had listened to me sooner? What if my older son had IE services? What if we had a diagnosis sooner than three years ago? What if I had known more from the beginning, and we weren’t just getting the evaluations and reports at his three year re-eval that the school should have done from the beginning? WHAT IF……

And that’s just the autism related “what ifs.” A whole other set related to our health issues and the genes I’ve passed on to the boys starts up a dialogue in my head too.

So as I sit here and crunch numbers of doctor appointments and therapy hours, and from reports x two boys with all sorts of various needs, I have to make this equation somehow equal a balanced childhood. I take it back when I said I like algebra.

One reason I’m struggling with Month of the Military Child posts this year is because Facebook is absolutely littered with statuses from various military organizations about how precious our military children are and how much they matter in the grand scheme of military life. The reality for our families is that these people don’t give a damn. I mean seriously. If IMCOM and the office of Military and Community Family Policy REALLY and TRULY cared, since someone at the DoD got a visit from “the good idea fairy” and thought it would be a good idea to contract out respite care for our EFMP (exceptional family member program) families, I would have had working respite care for more than THREE WEEKS since last year around St. Patrick’s Day. That was the last day my husband and I truly got out by ourselves. Since then, it’s been constant chasing down people to get them to do their jobs. I’ll leave out why the current contract ended up getting re-bid and the current company is losing it, but I’m sure this is just one of the many reasons.

It also took not only a class action lawsuit in the last year, but an act of Congress to get ABA therapy, but only for kids with autism, to get ABA therapy from Tricare. So no matter what you see floating around about how wonderful Tricare is, the reality is that when push comes to shove and you REALLY need care, not so much. If you can’t just head to the MTF for some Motrin or an antibiotic, you can expect to jump through hoops of fire for what you need. This has been made worse by your lovely Senators and Representatives in DC who want to balance the budget with the sequester. Cuts aren’t happening where there is truly excess, it’s happening where it hurts the most people. Can’t wait for mid-term elections.

Then there’s Autism Awareness/Acceptance month. There’s been so much infighting in the community, frankly, I want to say, “screw them all.” I’m so over it. I’m aware of autism every day. My boys make me quite aware thank you. It’s even been pointed out how I pretty much fit the bill too.

As for acceptance, if we as an autism community want others outside the community to be accepting, then the accepting needs to start from within. People need to stop being so ugly and accept that not everyone has the same journey. Autism is a spectrum. Autism affects not only children, but also those children eventually grow into teens and adults who also need supports. Everyone has a voice. No one voice is better than another. No one voice has more say than another. They are all just different stories in the journey. All voices that when woven together tell the whole story. So stop being so ugly and accept each other. Work together. No one is going to take acceptance seriously from the outside until you do.

And that is why I’m finding this April full of bullshit.

You see, I’m an autism parent. It seems these days that automatically makes me a bigot and full of privilege. I’m not allowed to speak anymore about what it’s like to raise two autistic boys for if I do, I am wrong. Everything I say about autism is now wrong because I am an autism parent.

Then you have the information I’ve received where it turns out I’m not really different from my boys at all. But you see, I’m not allowed to disclose that to anyone because then I’m just using that information to be a bully because I don’t agree with everyone. I’m not allowed to have opinions of my own and be like my boys and be an autism parent. It rips a hole in the space time continuum or something.

And our government and military are disappointing wherever I turn lately. Respite is still a clusterfuck. Oh wait, I’m not allowed to talk about respite. That’s exercising my privilege. At any rate, we don’t have it again, and it’s an offered service, and we need it. I’m drowning. My kids are giving ME sensory overload, and I need a break. There. I said it.

We’re facing sequestration because politicians who are overpaid and out of touch in DC can’t stop acting like petulant toddlers and just compromise for once. These politicians have no idea what this means for our military families like mine. The ones they claim to hold in such high esteem. The ones that their actions tell us they really don’t care what happens to us or the rest of the country as long as they continue to get their pay and benefits.

So you see, I’ve just been disappointed in everyone across all my worlds lately as a whole. It really puts a damper on the writing process.

Instead, I’ve been putting the majority of my efforts into the boys’ schooling. As it should be. They’re happy. They’re learning things they wouldn’t be learning in brick and mortar school like deductive reasoning. It’s amazing to watch them grow and learn even if it means I have to step outside my comfort zone sometimes. The boys are thriving, and I really can’t ask for more. The rest? Well, I suppose I can’t change everyone, so I’ll just work on my own little corner of the world a better place.

Then we all know what happened in CT. I’m not going to be yet another person to rehash it. I can’t. My heart won’t let me yet. It’s protecting itself from some big feelings that it’s not ready to feel yet. The brain isn’t ready for the “what ifs.”

The ugliness driven at the autism community in the week that followed due to speculation and irresponsible reporting by mass media broke me. I’m not a person that’s easily broken, but this did it. I’ve endured ugliness and vitriol directed at me as a military spouse and as a parent with a child who has food allergies, but autism was safe. Sure there may have been a lack of understanding, but the sheer and utter hate speech wasn’t there with autism until last week. A person can only bear so much.

Then out of the darkness came light. There’s a NY Times article titled “Walking the Tightrope on Mental Health Coverage.” It’s good. It’s what I’ve been talking about since 2005. It’s what I’ve been talking about online since I started blogging in 2006. It’s sad it took a tragedy for people to actually listen.

And the best part is the Autism Shines page on Facebook. Oh how it’s done my heart so good to see not only autistic kids, but adults, friends, and family posting with their positive messages. Some are friends I know. Many, oh so very very very many are people I’ve never seen before. That tells me that it wasn’t just the usual suspects in the online autism community feeling the pain, but so very many people. And while it makes me sad so many were hurting, it makes me happy to see so many spreading the positive. This. This gives me hope for our future as humans.

Zach is reading Tom Sawyer for his literature class, and while he was hesitant at first, he’s really enjoying the book. He’s asked me to obtain a permanent copy for the house. We’ll also be getting Huck Finn. Mark Twain is one of my favorite authors, so to see one of my children enjoy him is heartwarming.

Otherwise, we’re busy with events of the season – visiting family, going to see lights, Santa, and other activities. There’s always plenty to do in our area between Thanksgiving and Christmas.

It’s been the status quo, and I’ll take it. Exciting isn’t always better.