Tuesdays’s With Autism: Following the Leader

I’m back!

It’s been a whirlwind few weeks, and the winds are still whirling, but I wanted to be sure I caught this Tuesday to get back in the groove of things.

Between holidays, a new semester, my advocacy class, and Aiden’s birthday creeping up, I have been thinking a lot about his journey and how we have shaped him for adulthood. I wrote this piece for another venue, but I’ve decided to share it here. Happy New year!

When children show a knack or interest in a particular activity, parents tend to go above and beyond to help them thrive. If a child takes a liking to a soccer ball they get on Christmas, they are enrolled and on a team by spring. Say they have a penchant for drawing. Art classes abound! So why do we, as parents, hesitate to embrace the other things our kids with autism love: vacuums, desk lamps, and tape, oh my!

Your child’s passion is their strength. Use this as a map to help create meaningful short and long term goals. When we threw my son a birthday party at his favorite laundromat, we were sure our typical friends would shut us down. On the contrary, I have never seen such an inclusive community snapshot than being in the midst of washing machines and friends of all abilities. Laundry-related words have helped us kick start speech, challenging behavior, and sets our sights on a long-term goal my son has had for years: Washing Machine Fixing Guy. Recently, I was at our Capitol talking with a Senator who met with my son’s class earlier in the year to celebrate Autism Awareness Day. She told him she had a friend with an appliance repair shop and that he may be able to shadow a few days for some on-the-job training. We took his “silly obsession” as a toddler and have embraced it to the point that at nearly 14, he has an opportunity I would have never thought possible 10 years ago at diagnosis.

If your child uses a reward board or a token system, try using pictures of vacuums as you make your way to the desired reward. If you have an anxious child who enjoys the soothing glow of a desk lamp, write in a desk lamp for their desk during your next IEP meeting. A tape loving teen would be a valuable aide to the teacher always hanging up new things in their class. Heck, a LOT of clubs hang things up and down their school’s hallways! Find a club leader and explain the passion. Sure, some people will say no because let’s face it, we don’t live in an inclusive utopia. But Parents…some of them WI
LL say YES. That’s how you create change.

Every child deserves to be a thriving member of their community. One of the greatest barriers to an inclusivity is awareness. As parents, we want the world to embrace our child, but we need to remember that includes all of our child’s gifts, even the “quirky” ones. Start small and think big: you never know where you and your child’s puzzle-pieced road will go next.


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”
“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 – The Journey After Diagnosis…and Diagnosis…and Diagnosis…

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 2014, he was undiagnosed with autism and diagnosed with Intellectual Disability, Disruptive Behavior Disorder, and Static Encephalopathy  from a professional that met him once for four or five hours.  His regular neurologist disagreed and rediagnosed him with autism and ID.

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.

Tuesday’s with Autism – Back to School

We are t-minus two days away from school starting. I have decided that Aiden would think boarding school is a dream come true. He cannot WAIT to get out of our familial clutches into the arms of his public school. This is in large part in thanks to a great teacher and team, which, we all know, can make or break our all kids.

This year is the middle of middle school. We are “just” two years away from high school, but also WE ARE JUST TWO YEARS AWAY FROM HIGH SCHOOL!!!! Since we all survived our first year at “big school”, I have high hopes for this year (also probably because it’s August. By May, my spirit will probably be broken by the high hopes for summer. So it goes).

I realized that we are smack dab in the middle of his childhood via diagnosis. Instead of “he was diagnosed 8 years ago” I’m thinking more in terms of, “he has 8 years before he turns 22”. Time is funny if you consider hanging off a ledge while someone laughs and throws rocks at you “funny”.

So this year, I want to focus a lot on practical skills/life skills. What will he need when he’s an adult? Well, he will need to be able to walk up and order food, so I guess let’s work on walking through the lunch line alone. Bonus points for remembering your ID number to “pay” for your account. (Maybe send him with actual money? ehhh….Maybe next year?). When he’s an adult, he will need to know how to count money (probably? Are apps making that obsolete or less necessary? Should we look at budget instead. oh god. Must not panic). He will need to type but I still want to at least nail down a printed signature. Conversing with people. Tolerating chaos. Riding a city bus. Math on a calculator. Not muttering cuss words when people annoy you. Daily deodorant without us reminding him. Speaking up for himself. Slowing his roll on the meltdowns. Calming techniques. Raising his hand to answer a question. Really thinking about the answer rather than saying “yes” or “no” and walking away. Keeping a schedule. Spelling. Reading. Comprehension……you can see that one thought on growing up sort of snowballs. My self-soothing technique in this instance is knowing he has great “domestic skills”: laundry, simple things in a microwave, likes to help cook, enjoys doing his chores (usually), and is currently learning how to mow. So we have some tools slowly going into our toolbox. That’s good, right?

Those of you who have ASD or those with kids of teenagers/adults, what kind of skills do you think are important to learn as we get closer to adulthood? What sort of IEP goals did you have in place? Do you have any advice to pass on during this time of gentle transition? How much does technology influence your life and learning? Job advice? Basically, let’s hear it all: the good, bad, and ugly. Just like at the initial diagnosis, it’s time to rise up, take a big breath, and plan.