It’s arrived, the time of year that I have a love-hate relationship with: Winter Break.
Me: No schedules! No routine! More free time!
Also me: No schedules….no routine…Oh god, more free time.
There are only so many Christmas crafts one can make and only so many sugar-filled treats one can consume. (That’s a lie, the boys could consume their weight in sugar, but I like for them to have teeth and properly working GI tracts). The weather has been unseasonably sunny right up until the schools locked their doors. Now, it’s like an angsty 90s video grey around the clock.
Still, I want to take advantage of our break and enjoy the extra time with the little monsters. Between breaking up fights, breaking down plans, and doing my best impression of a broken record, I’m also getting in some quality cuddles and adventures.
There will be a blog break through the end of the year to focus my time on the fam, and to roll out some new snazziness, but Facebook, Twitter, and Instagram will still be active (mostly FB). Stay connected and I will be write back in 2018!
It’s the first #FridayFWords, and it synced up PERFECTLY with a piece I wrote for Oklahoma City Mom’s Blog that was posted this morning.
Now listen, let’s be honest with each other:
I have to post a little teaser and then lead you to the article via a link. Why? Because I’m contractually obligated to, that’s why! I have to trust you will follow the link to read more and man, it’s hard to get people to do that many times in bloggy world. So here I say, TRUST ME. It’s funny, it’s true, and most of all, you can pass it on to your family before that big get together that’s coming up. Here we go:
Dear Grandparents, Aunts & Uncles, and The Guy Your Cousin Always Has Hanging Around But You’re Not Sure What the Deal Is:
Hi.
It’s me. Your family member with a child that has additional needs. I thought we could have a heart to heart before we drown ourselves in Christmas Cheer and ham.
Every year during the holiday season, I watch two versions of social media unfold within my special needs community. There are the public family pictures with smiles and endearing anecdotes, and then there are the behind the scenes messages in our private groups. Whatever the story and scenario, it ends with mom after mom feeling hurt and isolated by the very people who are supposed to be loving and supporting her unconditionally: The Family.
Follow the link for the rest of the article. It includes a pretty funny picture caption. What are you waiting for?! HAPPY FRIDAY!
I recently went to my first college football game as part of a writing assignment. We don’t watch a lot of sports in our house, so the first thing I had to do was convince my little guys that this was going to be super fun. When I enthusiastically told them about our plans, they both looked at me with blank faces. Lief simply said, “Nah, that’s okay. I will stay with Dad.” August just wore the same face I would wear sitting through a quantum physics class: pure confusion at the most basic level. Footwhat? It was obvious I was going to need help when I proudly declared that the seats were by “the front of the goal line or something” so I invited my mother-in-law as a “cultural translator” so to speak.
I can’t give away spoilers for the other piece I’m writing, but I can tell you about Lief’s take on the evening. First, we convinced him to go with the promise that it’s the one place that encourages you to be LOUD. For a child who needs a constant reminder about using his inside voice, he was sold. What we failed to point out to our brilliant and quite literal thinker was that it didn’t mean that you walked into the stadium and basically battle-cry nonstop until you leave.
The moment we sat down, the shouting started “OH YEAH BAY-BEH! OH YEAH BASKETBALL!!!! I MEAN FOOTBALL!!!!! GOOOOOOOOO! WHOOOOOOOOOOOO!” We had 40 minutes before the game started. The team was stretching and a few people were meandering around the field.
I tried explaining the art of the shout, but it was too late. “You said this was a place I can be loud and I am being loud” he protested. Fair point. My mother in law pointed out that if he screamed the entire time, he would lose his voice. Logic is the way of the Lief and it helped for about 10 rock solid minutes.
By the time the game actually started, Lief had cheered for stretching, a mascot, a man in a banana suit, a few commercials on the big screen, the national anthem (during and after), the flags, a baton twirler, both bands, a picture of the Ghostbusters logo, the cameras, both teams, and a handful of other things I’m sure I am missing. My mother-in-law showed him when to put his pointer finger in the air and yell, “OOOOOOOOOOOOOOOO” (or something like that?) and quickly put his arm down when it absolutely *wasn’t* the time to do that. Through it all, Lief cheered and shouted and rallied. Our team was up? HORRAY TEAM! Our team was down? HORRAY OTHER TEAM! I was truly shocked he kept his voice and didn’t sound a bit raspy the following day. His vocal chords are impressive, for better and worse.
Besides walking away from the game and realizing I would absolutely do that again in a heartbeat, I also reflected on my loud-mouthed love. He is *everyone’s* greatest supporter and cheerleader, in and out of the stadium. He cheers on his brothers, his friends, and really anyone that crosses his path. When we went trick-or-treating, he complemented passerby’s costumes. He told some big boys in terrifying killer-clown masks that they did a good job scaring him. The boys just said, “uhhhhh thanks”, and Lief walked on, a kick in his step.
We constantly are reminding him to turn down his voice. Sometimes, he is so loud that I’m sure my ears will start bleeding. If I think about it though, 9 times out of 10, he is simply being happy, enthusiastic, and excited about whatever adventure he’s come up for the day.
The next time you have some tedious task to take of, channel your inner Lief. He will rally you through it all. “GO PAYING BILLS!!!’ “WHOOOO HOOOOO ROOT CANAL!!!!” “OH YEAAAAHHHHHHH BAY-BEH, CLEAN THE TOILETS”!!
October is Infant Loss and Awareness Month. I wrote a very personal piece for Oklahoma City Mom’s Blog that I have decided to share here. This may be an ICYMI piece for those that follow the Facebook page or it may be the first time you’ve read this. I’ll get back to your regularly scheduled program this week, pinkies.
I screamed with shocked excitement when you came to town and announced you were pregnant. You secretly recorded us under the guise of a group photo to save our reactions for years to come. In the clip, I said, “No you’re not!” Words that would haunt me.I spent your first trimester commiserating with you over morning (and afternoon and night) sickness, and in your second trimester, you announced you were going to have a girl. The first in our family for over 20 years! I was stunned! You called a few weeks later after a second sonogram. “Gotcha, he’s a boy!” Once again, I was surprised at your news.
We realized that your boys would have the same age gap as my younger two. You asked me how hard it was and I said READ MORE HERE
It’s true, “if you’ve seen one person with autism, you’ve seen one person with autism”, however, we are all part of the same club. We can share in victories because we KNOW how incredible it is to reach a goal, beat an expectation, defy the odds. We can all swap our own version of disappointment and outrage. For example, when Joe Citizen sees us in a random store and decides that they know how to parent our child better than we do. Afterall, “they look fine” and/or “just need some discipline” (yeah, noted. thanks. jerk.) We can ask each other anything – none of us will be phased because, yeah, we get it.
Right now I’m in the exhausted club. I could be a raccoon for Halloween for next to nothing because I’m up half the night, have dark circles under my eyes, and feel like I’m constantly handling the garbage parts of behavior. Yes, we are in the thick of a behavior backslide. Smiley Ditty Bear has become Grouchpants Cussface. Now that he is a teenager, this can become a bit more complicated: his loud is louder, his refusal to cooperate is less let-me-just-pick-you-up-and-get-you-to-a-safe-space because #manweight, and his anxiety and sensory chaos comes out way more scary to a passerby (sometimes, even to us).
The tricky part is that so far we have not been able to sort out any rhyme or reason.
We have looked at it from a medical and behavioral point of view, but nothing screams “Ah-HA!”. Honestly, at this point, if you knocked on my door and said, “Just have him stand on his head and put mustard on his feet” I would do it. It would be loud, confusing, and difficult, but I’d do it.
Even though this straight up sucks, the suckiest suck part (cmon, I’m tired. Just lemme write lazy, tonight) is that HE hates it. In the middle of full-on hysterical sobbing, he has cried, “I hate this!” Last night, after something set him off, he was blood-curdling screaming in his room and said, “I HAVE ANXIETY!!”
I’m admittedly not always cool in these high-pressure moments, but last night, I stayed very calm and neutral (yelling, arguing, reasoning, explaining – it doesn’t work when our kids are in Meltdown Mode.) “Hey, do you have words right now? Will you try to sign ‘yes’ or ‘no’?” Sobbing, he signed “no”. “Okay. I’m going to sit in the hallway.” I gave him a few minutes and poked my head in. “Do you want to hear me talk?” (who doesn’t!!) He signed “yes”. This was my tiny window.
“Can you touch your nose?” sooooooooob touch
“Will you clap your hands?” “sooooob clap
“Now, stand up and reach way up high” *sniff* reach
“Let’s count to five” verbal response
annnnnnnnnd he’s back.
This is, really, the best case scenario. There have been meltdowns that I have vacuumed through just so that I could make sure the house was extra clean for when DHS undoubtedly showed up to investigate the child murder screams that periodically slip past the walls. They haven’t shown up yet, and I truly thank my neighbors, grandparents of a teen with autism on one side, and a retired special ed teacher on the other, for that.
To be clear, this isn’t constant. These unpredictable emotion bubbles are just popping up much, much faster than before. I’m up for suggestions, so let’s hear them.
Last Thursday, I posted a picture to Real Life Autism’s Facebook page showing the cost of a new prescription that Aiden was given by his immunologist earlier that day.
(Ill share it here, but you really should “like” the FB Page so that you stay in the loop for things like this, advice posts, funny stuff, etc):
Luckily, I was in the drive-through or I may have collapsed on the pharmacy floor.
This is the cost after insurance. The pharmacist suggested I take it down the road to another place as our current Rx Hub doesn’t take Aiden’s new secondary insurance. I did just that and I am still waiting to hear the new cost. Apparently, they can’t tell me what it will be until they fill it. In order to fill it, they had to order this magic-potion-script that better clean my house and do my grocery shopping for that price.
Years back, we had to pass on a medicine that was suggested for Aiden by his neurologist. It was a non-stimulant that she thought would help him with some challenging behaviors. Since there wasn’t a generic yet, we would have to pay for the real deal. That would’ve been fine except it was running around $300/month. In other words, impossible for us. Instead, we went with Risperdal, a medicine that would up in a class action lawsuit. Luckily, Aiden did not have any of the issues than many boys did due to the medicine, but it was clear: Money dictated help. This isn’t a new fact, but I often wonder if those that don’t have direct ties to people with additional needs realize just how much this can impact our loved ones.
I have mentioned Aiden has PANDAS, but I have not gone into too much detail here. Mainly because I am still learning about it myself. There are some medical professionals that don’t even agree that this is a proper dx so I will concrete the issue by saying he has also/concurrently(?) (again, still learning!) been diagnosed with Hypogammaglobulinemia. This makes him susceptible to illness more than others. A proven method to helping people with PANDAS and Hypogamm(etc) is IVIG. The problem with all of this is that insurance is reluctant to approve treatment for a controversial diagnosis like PANDAS. It took us two immunologists and about a year and a half to get approved for IVIG and that is the quickest of anyone I know. Many people end up paying out of pocket to the tune of $10,000+ (Check out this parent forum with ACTUAL OOP costs from 2013).
Last year, Oklahoma was the 44th state to pass “meaningful autism insurance coverage”.HB2962 will allow citizens to “gain access to basic, evidence-based care for their family members with autism”. There is more to the bill than Applied Behavioral Analysis, but it finally allowed BCBAs to bill insurance for ABA Therapy in this state. Before that, there were only a handful of people that could access this service by way of their insurance (TriCare, for example). Many actually uprooted their families and moved out of state in order to afford services. The rest of us would have to pay out of pocket for these services for our kids if we wanted access to this therapy. This could add up to thousands upon thousands in a single year. I ended up working in an early intervention pilot program that utilized ABA Therapy with astounding results for the children enroll in the program. However, my son was too old to attend, insurance wouldn’t cover him, and so I learned everything I could and would sit at home trying my best to work with him (Mama as a ABA Tutor is TOUGH). Now, even with meaningful reform, self-funded insurance policies do not have to provide the coverage. Guess what we have? Yep.
There’s another money pit: careers. Many parent’s must have one parent home or employ an absurdly dependable person for their child. I have worked a career around Aiden. There was some time that I was single parenting it. Aiden was 3 and could not speak very well at all. I could not, in good faith, put him in daycare. One, he’d constantly be sick and two, he could’t speak up for himself.
I had a full time job that mostly accommodated his needs, but eventually I chose to move into a (more expensive) town with a school district better suited for kids on the spectrum (and closer to therapies). However, that gave me a 30 minute commute one-way and the difficulties to single-parent balance work, therapies, school, and family in general (remember, Aiden also has an older brother!) became stacked. I took a part time job in town (see above) that understood autism, applied for Aiden’s SSI, had SNAP benefits, and his dad was sure to pay child support on time (as he agreed that daycare was a no-go). I would give myself $10/wk for ME ($20 if I was feeling Baller), but everything else went to the kids and Life. It wasn’t pretty, but I made it work.
I see this struggle for so many of us. Work full time for as long as possible until your kid falls ill or the school calls or until therapy and doctor appointments become “intrusive”….. My story isn’t the exception, it’s typically the rule. We all have to figure out how to make things work for our families and that usually means putting vacations, home improvements and a lot of the “fun stuff” on hold. Now, 10 years later, Aiden is older and I am remarried and do not need the SSI and SNAP, but a child with additional needs still takes financial punch to the gut. I can finally work with confidence that I won’t be called every single day, but autism will always come first. That’s a simple (and complicated) fact. So that cost? Annual income x 10.
This doesn’t begin to even scratch the surface of long-term care as an adult.
Real life autism is the promise I made, right? Well, here it is. This is a real life reality for many of us. I hope those of you that have experienced this issue chime in and share your story, even a piece of it. I hope those of you who are “bystanders” of autism (neighbors, friends, family, etc) are learning through these posts. I would love to hear from you as well.
This will be the first in a series Titled: Cars of my Past, A Tribute.
CARS OF MY PAST: A TRIBUTE – The Car and the Hole
21st century car seat warriors, this piece may not be for you. Let me stress that I survived the perils of car-dom in the prehistoric times of the 80’s and 90’s where terms like “double-buckle” didn’t set off a bat signal to child protective services.
In the early years of my kid life, we had a lot of cars. They were the cars you could buy with whatever cash you had on hand so that my mom could make it to the store, get us to school, and wouldn’t have a car payment to worry about. The cars typically ran long enough to save up enough money for a “new” one. The cars were old, not cool antique old, just old.
During one stint, we had this incredible mustard yellow car. I want to say it was a 1980 Mustang, but I can’t be sure. I was of an age where “and a half” spoke volumes about how old I was. Seven? A mere child. Seven and a half? I am a mighty warrior woman that was much closer to ten than the day before….may as well split the difference and call me a teenager. I was a delight. But I digress….
This car had two bucket seats up front and I believe two seat belts in the back. This did not mean that it accommodated four people total. No no no, see? It was the 80s. If we had friends that needed a ride home, not a problem! Just double buckle. For those of you with your heads cocked sideways, this simply meant you used one seat belt to buckle two people. Sometimes, we would triple buckle. One person sat on another persons lap. Pull the seat belt over the both of you *PLUS* the person next to you. Voila! Safety!
If there were a bunch of us heading somewhere, my mom was again the one offering to do the driving. She was the pinnacle of stay at home mom/car pooler/ snack maker/ friend welcomer (to this day, she is friends on Facebook with people I knew as a teenager….I am not). If the seats got too full, we just used one of the floorboards as a seat. The only rule she had was to “avoid the hole”.
I haven’t mentioned the hole, have I?
The Hole was a rusted hole in the floorboard behind the drivers seat. It wasn’t huge, but it wasn’t small. A baby could have definitely fit through it, but we knew better than to put babies in The Hole. When we needed to hold our petite three-year-old sister in our laps (double-buckled, of course!), we never once threw her in The Hole. Again, it’s all about safety folks.
We didn’t need screens to keep us busy in the car because that entire concept never occurred to us as that sounded too much like a sci-fi futuremobile. We stayed occupied in our own, special way: dropping pennies down The Hole while my mother shuttled us around town, running errands. It was like our version of Hansel and Gretel except instead of making our way to a witches candy house, we usually wound up at Albertson’s talking to Elaine, the manager. I remember being especially excited when it rained because we could get some splash-back from the bigger puddles through The Hole. It was like our own, personal, Yellowstone Geyser experience!
Legend has it, my dad eventually “sold” the car to my uncle for a nice set of golf clubs. Bartering at its finest – take that Kelly Blue Book!
I spoke to my dad, and asked him if he remembered the car. He didn’t at first, but when I mentioned The Hole, the memories flooded back and he started laughing. “You had to be careful since the exhaust fumes would come through The Hole, right?” I don’t remember that whatsoever, so I guess the answer is a resounding and noxious yes.
Ahhh, the late 20th century. It was a simpler time.
Sitting around a table, I remember the moment right before Aiden was diagnosed.
“What do you think you would do if he *was* diagnosed?”
A) That’s a terrible spoiler alert.
B) That’s a HUGE question to pose right before even bigger news.
I had about 10 seconds left before our lives would all shift to the unknown path in our peripherals.
“I just know I can’t go to ear infection support groups. I’d get to support groups, continue therapy (therapies), and make sure I fought for him.”
That was October 2007. He was diagnosed with PDD-NOS. The year before, he had been receiving speech under “speech delay”.
On Election Day 2008, he was diagnosed with moderate autism.
In 2013, he was diagnosed with Epilepsy after seeming to hallucinate a few times, “fading” throughout the day, and doing a very specific tic with his jaw. After three annual EEGs, he was undiagnosed.
In 2015, we saw our first immunologist. He said Aiden didn’t have PANDAS, a diagnosis that had started to circle him.
In 2016, he saw a different immunologist who ordered even more labs. They showed he absolutely did have PANDAS.
It’s 2017. It’s been 10 years since his initial diagnosis.
“What do you think you would do if he *was* diagnosed?”
It wasn’t as much of a spoiler as I thought. The doctors, researchers, and the DSM surprise me on a pretty regular basis, but it is Aiden that has surprised me the most. He fights for a good day on a bad one. He appreciates a world that is too loud, too bright, too much. He is a people person regardless of his challenges in socializing. I’m watching him dance to the theme song of The Office right this second, as he fights a flare up that pits his brain against his body.
It has been a hard week. A HARD WEEK. I will talk about PANDAS soon, but for now, just trust me when I say I have dreamed of a world where responsibilities and hangovers don’t exist. I want to check out, just for a second, and not worry. not care. not research. not look at ingredient labels and cringe. not second guess (or third. or fourth). not irrationally worry that the pharmacist thinks I have Munchausens because I am ALWAYS picking up some script for Aiden. not rationally worry about his future. not play symptom whack-a-mole. not have a medicine cabinet that once made my moms jaw drop. He is the one with the diagnoses, but we all live with the symptoms.
As I sat in the doctors office with him this afternoon, face mask on, tears in his eyes, it was him who said to me, “It’s OK mom. You’re tired? It’s ok mom.” He doesn’t give up. I smiled, very, very wearily, and said, “I AM tired, Aiden. It’s ok, how are YOU feeling?” He smiled through the tears and said, “I have so much anxiety”. Then we held hands and I silently acknowledged every piece of our life dynamic that sat in those three, short, exchanges.
We are focusing on autism and PANDAS these days, but it doesn’t matter the label or the diagnosis. We fight. We strive. We work. Because if this kid is going to kick ass and take names, we will, too.
It’s 4am. We just had a fantasically loud thunderstorm with more to come during the next few days. At the beginning of the storm, a dog who shall not be named peed on the tile. I guess that is better than anywhere else, right?
In the thick of the storm, lightning and thunder crashed, setting off the car alarms in the cul-du-sac. While I frantically tried to turn ours off (chase finally fixed it) not one, not two, but THREE of the kids woke up. Phoenix thought his car got struck by lightning (spoiler: it was not), Aiden was completely disoriented, and Lief was terrified by the loudness of the ordeal.
As I tried explaining thunder and lightning to him, I realized I know shit about weather, scientifically. No, I know weather like a farmer. “It smells like rain”, “It’s pink outside – gonna snow”, “It’s green outside – there’s gonna be a tornado”, “Animals are acting weird – storms are coming” – these are just some of the things that I say out loud as the gospel truth. However, tonight, “Thunder loud go boom” was basically all I could muster before I realized I sounded like a complete idiot. I finally just let him sleep next to me and told him we could learn all about it in the morning (because I need time to study and save face). Aiden refused to go back to his bedroom. He has found comfort passing out on the couch, snoring, and occasionally kicking me in his sleep.
I’m pretty sure Calista-the-other-dog is one nervous fart away from the devil. I’m actively trying to debate optimal dog poop time vs storms vs sleep. Like, it’s a real dilemma in my head.
Augie is asleep in his room like a champ, so I’m just going to assume he has peed all over the bed because why not?
Now I’m wedged between a clingy six-year-old and a snoring 13-year-old on a couch while I hide under the blankets to avoid the smell of dog farts, fretting about dog poo and kid pee.
And this, folks, is the story you tell in a sex-ed class.
Our house is in the middle of some exceptionally level 15 Tetris type autism. I think it’s the combination of the insane, too-hot-for-the-devil heat, last minute scheduling change, puberty, and just his general want to get back into school. That said, I’m going to pull my autism card and do some fancy cut-n-paste for Friday Haha.
A birthday is around the corner for Lief. He enjoys being the center of attention, so today, I’ll let him be the “guest writer” so that I can try to survive the AUpocalypse and party prep. Without further ado, I give you some of my most favorite quotes from my biggest ham and sweetest soul.
me: i want to be asleep.
Lief: you not a Sleep, you a Mommy. truth.
– age 3
“What are those?”
“My eyebrows”
“Waaaahhhhhh!!!! I want eyebrows, tooooooooo”
– age 3
“If I can’t play bideo games, I can only play with this apple….(pathetic toe “kick” and the apple moves an inch)….see, apple ball is just a snack!” Annnnd cue wails.
Lief: drama queen, bideo game enthusiast
– age 4
“The girls made poop tricks at me and I don’t like poop tricks…….hunter is my best friend, now. He’s a boy and not a dog.”
(Poop tricks, clarified, was a sing-song poop version of “nanny nanny boo boo”. He thought they were saying “nanny nanny poop poop”)
– age 5
Learning that his dog is a girl, not a boy, he looked down at her resting in his lap.
“Um, you think you can get this vagina off me?”
-age 5
“how was school, Liefy”
“It was fun. I was kind and I didn’t sniff anyone’s butt. Also, I showed RISE”
Good job?
– age 5
What are some of the off-the-wall things your kids have said? Share below!
Happy Haha Friday!
Real Life Autism 