Friday Haha – Treasure Hunt

I’m going to do something a little different today for Friday Haha.

We are going on a treasure hunt!

My silly story will be on the facebook page, today. You can get there by following this link.

So why am I doing this? Wellllll, I got a very good question in the super-duper-confidential email yesterday. I will be posting the question on the facebook page sometime this weekend, and I would like as much feedback as possible before writing up a post for #TuesdaysWithAutism. This question, in my opinion, will need a lot of experiences, feedback, and tips and tricks from both parents, professionals, and self-advocates. I would love to hear from you so that we, as a village, can answer this question.

As for the story, it’s short, quick, and should at least bring a smile to your face.

Enjoy!

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Tuesday’s With Autism – Behavior Backslides

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.

Try to avoid any mustard.

Tuesday’s With Autism – On Thursday Because LIFE

I write on a laptop.
On my bed.
Criss-cross applesauce.

Usually with music or TV on in the background.
Definitely away from people.
Because I like some noise, but don’t want to make any.
And I don’t like interruptions.
And I don’t want to chat when I’m in a mode.
And I like to have a “thinkin’ drink” every once in a while.

Anyway, a week ago, the laptop screen broke.
While I was in Dallas, Hubs let me know he found a great deal on a desktop so he grabbed that because #budgetlife.

And I said, “cool” because 99% of my brain loves a bargain. However, the 1% of my brain that NEEDS routine and plans and spirals with unexpected change got kind of panicky.

I came home, and Hubs had set up the new desktop in the office nook, in our living room.
It looks great.
It makes perfect sense.
Except I saw this and froze.

“But my bed.”
“My music/tv noise.”
“My alone time.”
“My criss-cross applesauce.”

I sat on the chair and looked at the keyboard.
Oh. My. God.
An ergonomic keyboard?! Have you SEEN these things?!

I stood up and walked away.
Over the last week, I’ve eyeballed this perfectly fine computer like a monster.
“I need to write”
“Maybe I can from my phone”
“Nope”
“FML”
“What an entitled problem, stop it”
“But my bed….”
Thus the cycle continues….

And let me stress again, it’s perfectly fine in real world, but my brain will not accept the change. Yet.

I promised myself I would sit here today, so I’m here.
Kids and toys screeching behind me.
Dog making that dog-smacking sound.
I’m shocked my ears haven’t started spontaneously bleeding.
The light in here is directly over me and the color is all wrong (to me).
The chair is too hard (to me).
The keyboard taps are wrong (it stresses the spacebar sound – just. no.)

And as I take this all in I think, “autism and genetics are simply amazing.”

Because seriously.

The kid comes by it honestly.

I just don’t always remember that.

Except in moments like this.

Maybe I can borrow his noise-canceling headphones and change the lightbulb.

How do you and/or yours handle change that looks minor but feels major?

Sound off below.

We will call it my positive writing reinforcement.

Tuesday’s with Autism – Co$t

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):

rx
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.

 

“Ausome” People, Places, and Things: Chew on This!

When I was a kid, I used to chew on my shirts. Sometimes it was because I was bored or stressed out, but a lot of times, it was simply sensory input that felt good. This wouldn’t have been a problem except for the fact that I would twist the collars and get holes in my shirt. Apparently, I would also walk down the grocery aisle and lick the rails. I have successfully blocked that memory, but my mother hasn’t. Based on the way she tells me the story, with shudders and germ-x glimmering in her eye, she would have LOVED to find me an alternative, more hygienic option for my sensory seeking tendencies.

Lchew
A product that is toxic-free and safe for your child to put in their mouth – one less worry for my mom brain!

Chewigem USA offers chewable jewelry and was launched by “ausome” parents of a teenager with Aspergers. Unlike many of the knockoff versions you may see floating around the internet, Chewigem’s products are made with medical grade, FDA approved silicone. Their site also promises shoppers that each piece is non-toxic, lead, latex, BPA, PVC, and Phthalate free.

Their necklaces and bracelets come in a variety of designs and are functional and fashionable for all ages. The “chewelry” comes in three different levels of chew strength: mild, moderate, and moderate+. If you aren’t sure which product is best for your chewer, you can contact Mama Chewi herself, and she will help you determine what would be best for your individual needs.

When Aiden gets especially stressed out, he tends to scratch or bite his own forearm. He also growls and grits his teeth as a sort of warning that says, “back away, not today”. Once he has calmed down, he cries when he sees his arm. It distresses him to no end. I talked to Mama Chewi about our problem, and she suggested Aiden try a Realm Ring. The simple design made it perfect for a teen boy – a discreet aid AND it looks cool! Sure enough, the next time he got upset, I prompted him to bite the necklace rather than his arm. You guys, he stopped biting his arm! After a few more prompts, he started going straight for the Realm Ring all on his own. Self regulation AND his arms are injury-free!

ChewigemUSA
Look at these great options for Halloween!

Now through Sunday, September 17th at midnight, you can receive 15% off of your Chewigem order by using the  code keepitreal (Aerobie, Litecup, and Senseez products, not included). This is the perfect opportunity to stock up on a product that you already know and love or to give it a try for the first time. It’s only September, but the madness that is the holiday season is just around the corner. In my personal experience, nerves are quicker to fray as the routine changes, more events stack up, family and friends come in and out, and let’s not even talk about the school breaks (Aiden HATES it when he can’t go to school!)
Check out Chewigem USA on Facebook and Instagram. Be sure to let me know how you like your new accessories!

Friday Haha – The Car and the Horn

Last week, I featured a story about one of my childhood cars that would make 21st century parents clutch their children and scream in horror. Now, the Friday Haha’s will not turn into Car Talk, but I would be remiss if I didn’t also share the story of *my* first car. The story ends with me hysterical crying and an old lady in a track suit flipping me off, so trust me when I say, buckle up and enjoy the tale.

I had no interest in driving as a teenager. I was good with catching rides with friends, hopping on the bus, grabbing a cab, and jumping on a train. This was early aughts in Dallas, so this was a time consuming cluster, but it kept me from behind the wheel, so I was fine with the arrangement.

My mom finally convinced me to get a license once I had my oldest. “What if there’s an emergency and you need to get to the hospital?” Fair point. I got my license a day or two before my 19th birthday. Still, I needed a car. I took everything from my Teenage Parent Budget and sorted out buying a car for a cool $250 from my older brother.
giphy

I have no clue what kind of car it was, except gold and Chrysler-looking. The steering wheel looked like it was better suited for a go-cart, and you had to drive it the way people “drive” in old movies – shaking back and forth at 10 and 2.
I don’t remember this, but my mom is pretty sure that I had to hit the starter with a hammer to get the car going. It could be true, because I *do* remember finding a mechanic who worked on my car quite often for the low low cost of a six pack and some smokes. It was a beautiful arrangement.

I’ve gotta hand it to my Ma, this did make going to school and work *much* easier. In fact, I ended up getting a job much further away than I ever would have without this beast. After school, I would drive from Coit and 635 towards Irving and make it to work in about 25min. Breezy. However, driving back into Dallas took much longer, especially on Fridays. I usually left an hour early, sat in bumper-to-bumper traffic, and did my homework.

One particular rush hour, I was sitting there, probably doing some Comp II assignment, and started hearing someone honking. There was literally no movement on the road, so this was irritating at best. They did not let up. Other cars started honking back and finally the screaming started. “EFF YOU!!” “MOTHERBLEEPER!!” “KNOCK IT OFF A-HOLE!!!” And really, it was all called for because who the hell honks NON STOP in a traffic jam….I do. It was me.

You know those moments that cameras zoom in on a face in horror/realization? Yeah, that was me as I looked up and saw people screaming at ME. I turned down the radio, and I heard it. It was The Beast. The car had gone full-on Christine on me and started honking….and honking…and honking….I think it wanted me to die in a road rage accident. I’m sure of it.

There’s no where I could go. I tried turning off the car, and it kept honking. I finally threw my hands up in the air so that people could see that I was NOT doing this and hopefully, spare my life from disgruntled commuters. I wasn’t quite at i-35 yet. Folks, I sludged down 635 like this for nearly an hour. I couldn’t pull over because I had to get Phoenix from the babysitter. Every minute I was late, was a $1. By the time I got to my exit, I was hysterical crying, hands in the air, and managing to drive mostly with my knees. When I pulled into the babysitter’s neighborhood, an old lady power-walking in her track suit smiled and waved. I responded by aggressively honking and tearing down the street. She flipped me off – I forgave her immediately.

I threw money at the babysitter, who was having none of this Horn Excuse, loaded up Phoenix, and drove to his dad’s apartment. It took him all of a minute to disconnect the horn. “Eff that car, I’m never getting in it again!” I declared.

And I didn’t. I straight abandoned that car in his apartment parking lot where we watched it sit for a year. Sometimes, I would walk by and kick it or spit on it. Every time I looked at it, I began cussing as if I were speaking in tongues to Jesus Christ himself. I don’t remember why I didn’t sell it or really whatever happened to it in general, but I know for a fact, I never, ever, stepped foot in it again.

I knew I was not meant to drive.

How does your first car compare? Do you have a crappy car story? Sound off in the comments!

Tuesday’s with Autism – From the Mailbag: The “Rainman” Question.

If you have a question about autism, spd, adhd/add, etc, send your completely anonymous questions to RealLifeAutism.sarahah.com . If you want to chime in on the questions before the post hits, be sure to follow the facebook page here.

 
I have gone most of the day thinking it was Monday. That should give you an idea about how things are going over here – I talked to the neurologist today and get to see the immunologist on Thursday. Yeah, it’s THAT kind of week. At least it’s closer to Friday than I thought.

A few weeks ago, I told you guys I had started an anonymous email option to help open up the dialog regarding autism. Some people asked about sharing the option for other diagnoses as well – hey, why not? Many people with autism have multiple diagnoses.

The idea behind this is to create a dialog that may not happen face-to-face. I want you to ask the hard questions, even the ones that may be offensive. Share the email and let’s create an understanding and inclusive community through dialog. A good friend paid me the greatest compliment when she said, ” I love that you work every day to make people suck just a little less.” Perfectly worded. That’s the goal!  Another friend of mine said she has a mantra that I have since fallen in love with: Communicate. Educate. Advocate. That’s gonna be a tattoo on my body at some point.

One of the first messages I received was from a parent who said, “People ask, ‘Is he like Rainman? What special skills does he have?‘” Besides cartoon smoke blowing out of your ears, how do you answer this?

“Rainman” may be the second most offensive r-word because, like many stereotypes, it’s a lazy one.  I personally hate this question because, it puts me in a challenging spot. If I say, “he’s not like Rainman” does that imply my kid doesn’t have “special skills”? Just because he can’t tell you insane facts from 50 years ago or count the exact amount of toothpicks that fall on a diner floor does not mean that Aiden doesn’t have “special skills”. I believe he loves laundry and washing machines more than anyone else in the ENTIRE WORLD. #1 out of 7 billion and some change ain’t bad!

Typically when someone asks this, and they do my reply tends to depend on the amount of sleep I’ve had, the number of doctor appointments I have sat through that week, and if I’m feeling sleepy-snarky or awake-and-advocatey. I have definitely replied with Aiden’s love for laundry and his want for a washer-world. I have also told people, “his special skill is tolerating a world that is turned up at a 15 every second of every moment when all he wants is a 4 or 5…even an 8.” I try to keep things light even though I am eyerolling so hard, I can see my own butt cheeks. The question annoys me so much, but by asking it, it typically means people are at least trying. It’s a good chance to start a dialog.

I posted this on our facebook page, and a few of the responses made me laugh. One parent said, “I tell them she is a really good judge of character, and evidently doesn’t like you”. Another parent said that she says her kiddo’s “savant skills” are, “eye rolling and pulling all-nighters”.

One parent shared her sincere response, ” I’m sure some people with autism have that skill. Matthew was blessed with other skills. All children and adults have strengths and areas that require assistance. Its just a matter of learning to navigate the map you were given.”

What about you? Has someone brought up Rainman to you and yous? Does it bother you? How did you respond?