Tuesday’s With Autism: Origami Owl

I’ve recently gone back to work full time and am still learning time management between Work Me and Home Me as evidenced by the state of my house and that steamy dream I had where maids came in and deep cleaned my home. They were wearing baggy jeans and t-shirts because the tres-la-la part was the cleaning. I mean ceiling to baseboard. So choice.

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hot.

I haven’t worked full time since 2008, and I left my part time job in 2013. My whole work gig has been based around the kids: either they could come to work with me or I worked around their school hours. I moved to part time because I was juggling a whole new world Aladdin and Jasmine failed to mention on the flying carpet. My employer “got” autism as it was an early intervention program so I had some leeway many parents don’t when it comes to work. I have been very fortunate in that sense.

Now that I’m back to work full time, it’s still about the kids, just for different reasons. The “baby” goes to Pre-K this August and was begging to go to preschool this year –  “school like brothers”.  Why would I continue to be a stay at home mom if there is no one home to stay at home with?? This gives us the chance to send him to preschool with purpose, save money, pay off debt, and the place I am working may very well be a place Aiden and his buddies utilize in the not-too-distant future.

All of that rambling is to say the work conflict is HARD whether or not it is a choice. I just started a month ago, and have been guilted about a valentines day party, a jumprope for heart event AND a field trip by Mr. Six. He’s used to Mom being at the stuff so I can’t blame him, but cmon kid, put down the shiv of shame for just a minute!

I want to start highlighting individuals or families bopping around with autism who balance that trifecta of Life, Work, and Spectrum. Some of us are working outside of the home, some from home, and some have even started their own businesses. It is a tightrope extravaganza some days and my goal here is to high five and thumbs up and positively reinforce the hardworking folks I highlight. If they are running their own business, please take a minute and check out their links. It’s like Keep it Local but for the autism tribe (I can’t think of something catchy yet, but Im all ears!)

ANGELA OWENS – ORIGAMI OWL CUSTOM JEWELRY 

Angela and her husband have three amazing kiddos. Two of her kids have autism with some co-morbid diagnoses including adhd, ocd, and spd. She’s both a stay at home and work from home mom out of necessity. This #bossmom has started working with  Origami Owl, an online custom jewelry shop that has something for everyone. Angela’s site is filled with incredible options to choose from. She also has a facebook page if you have any questions about the pieces or want to speak with her directly for a more personal shopping experience.

 

Autism Awareness month is just around the corner….I’m just sayin’……

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Angela’s driving force: this adorable trio!

I don’t want to give too much away because the site is well worth the lookie-loo, but I will say it is not just autism charms. There are all sorts of goodies: watches, earrings, bracelets, and my favorite: a locket you can wear that you add essential oils to for a daily dose of relaxation and calm or alert and groovin’ – whatever your EO jam may be!

If you’d like to be highlighted, let me know with a quick email or comment. Happy Tuesday!

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#TuesdaysWithAutism – Big News From This Big Mouth!

This is another quick one, but that’s because #TuesdaysWithAutism was posted directly to the Facebook page, today.

Why you ask?

Because I had BIG NEWS! Wanna see?

LOOKIE

PS: My life will slow down after Christmas and awesome content will return. Until then, it’s going to be a little ragtag around these parts. Apologies!

Family: Holidays Vs. Special Needs Families

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!

 

Tuesday’s with Autism – Community, Advocacy, and Advice, Oh My!!

It’s been a super duper busy month and posts have fallen a bit to the wayside, apologies. While there were not many blog posts, there was some good stuff over on the Instagram, Facebook, and Twitter pages (hint, hint). Now that we’ve gotten past that shameless self-promotion, let’s play ketchup!

Community

A few weeks back, I told you about Ty, the amazing community ally that we met at our local 7-Eleven. Word spread and Oklahoma’s 7-Eleven team reached out to thank us for the good news story (because let’s be honest, we NEED good news!) About a week later, Aiden received a package in the mail full of really neat 7-Eleven swag! There’s a general consensus that the Slurpee cup with the shark bite mold is the absolute coolest. So once again, thank you 7-Eleven! I cannot rave enough about your commitment to community!

 

Advocacy

A much longer post will be coming soon on this subject. For now, you have a chance to see some of the things we have been up to by searching #AidenattheCapitol on social media (again, links up there at the top, guys). Aiden is cutting his teeth at being his very own self-advocate, and we spent last week at the state Capitol talking to representatives and senators about the importance of fully funding and protecting programs that are essential for Aiden to thrive in this state. I have been accepted in a program called Partners in Policymaking, and I am learning so much about policy and advocating for people with disabilities. It is an international program available in many states across the US and a handful of other countries as well. I would HIGHLY suggest looking to see if your state offers a program and applying asap. It’s like taking the red pill and finding out about the Matrix. Minnesota offers a self-paced e-learning version that gives you *some* info, but not nearly what you would get by being fully immersed in the program. Still, check that out if nothing else. If you are a self-advocate or advocate for others, I’d love to hear what you are fighting for in your part of the world!

Advice

Oh my gosssssssssssssssssssh (<–key stuck, but I’m keeping it as I feel that exasperated about how long it’s taken me to circle back to this). A while back, a parent emailed and asked about eating challenges and whether they get better over time. I posted the question on Facebook and got some feedback from other parents. Lacey, a mama, a blogger, and my besty best friend is following along. Her little guy does not like runny textures. Instead, he gravitates to crispy or crunchy items. Rayne chimed in and said that her 10-year-old son has had the same aversions since he was two years old. She calls his diet, “the beige diet” (and I’m sure a lot of you are nodding in agreement, knowing exactly what that looks like). Tina also commented and said that her son “gets better, then reverts”. It’s like the old Paula Abdul song, “two steps forward, two steps back”.

As a parent, I watched Aiden gag and vomit at anything runny, mushy, or shaped in a circle for a few years (between 2 and 4 years old). This made things TOUGH when he had his tonsils and adenoids out. There was no rhyme or reason to it for us, but to him, these were absolutes in his life. It wasn’t just food either, I’m talking *anything*: play-doh, shampoo, glue….anything with that tactile sensation. One summer, he went to a speech camp (MDO with SLPs). I walked in to get him, and he was sitting there with some play-doh. I was gobsmacked, and no one acted like they had ever seen him be defensive of this texture. After that, it was just….better. Don’t get be wrong, he still doesn’t like yogurt and some other foods with a runny consistency, but he does eat some of them now. When he doesn’t want them, he can usually say, “no thank you”, but the occasional dry heave and/or vomit does happen. It’s hit or miss.

In short, the general consensus is “it varies by person”.

One thing you may try is picking one food to focus on. Start with just exposing it to your person. Maybe it’s on the table to the side of them, or right in front of them – do what you think they can tolerate. After a while (while = a week, a month….it varies) play a copy game and take turns touching it with your fingers. Reward this big time. After that is successful, try touching the food to your lips and have your child copy you. Next, have the food touch the tongue. After that, work on taking a bite and eventually swallowing the food. Again, it could take a week, it could take a year, but that’s one possible way to at least lessen the aversion. Sure, maybe they never eat mashed potatoes, but I know there was a time, I wished upon wishes, that we could sit at a Thanksgiving table without Aiden throwing up everywhere. So, you know, figure out your goal and go from there.

It’s Halloween and we are heading out to trick or treat here shortly. I have a ninja, Spiderman, and washing machine looking for candy this year. Can you guess which one is Aiden? Of course you can. What about you? What costumes are you and yours sporting this year? let me know!

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.