Infant Loss and Awareness Month

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 Didn’t Lose the Baby, but I Lost Alongside You

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

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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.

Friday Haha – Passive Aggressive Parenting Hacks

Quick Note: Also, plan on Tuesdays With Autism starting next week. I would have began this series sooner, but Ive been busy with, you know, autism. Ahhhh, Life. Anyway, Here’s to the weekend!

Do you ever have one of those days where you can totally understand why some animals just eat their young? Of course you have, you’re a PARENT!

Rather than eat my kids or abandon them in a barn, I rub my temples a lot, cuss in the garage, and get super duper passive aggressive…in the fun way! Below, are some of my favorite ways to get back at my most precious monsters.

– Hide vegetables in their food. Yeah, you think you’re getting a carby bowl of macaroni and cheese with no nutritional value, but guess again, Buttholes! I have ninja’d vegetables into almost a fine powder and you’re eating them. Oh yes, you are.

– Wash the windows with a high power hose and have them stand on the other side. Sure, in reality they are dry and inside, cackling at this fun “game” you’ve created, but there’s something incredibly satisfying about pretending to spray your kid in the face after they had a screaming fit over their socks for 15 minutes. Bonus: clean windows!

– Delete their favorite app off a device, unplug the TV and claim it is broken. Take that, spawn! You have to get along and use your imagination to be entertained!

– Hide the bubbles. You must slum it in a bubble-free bath tonight, tiny humans. Maybe next time you guys won’t fight over who *has* to clean up the mess you both made…..followed by who *got* to pick up that red car over there. No bubbles for you!

– Skip parts of the bedtime story. Oh, a new book that’s incredibly detailed and will draw out bedtime beyond the regular two hour charade you’ve already created? No. Once upon a time a person did a thing and then that thing was resolved. You don’t need 13 pages of details after the day we’ve had. You need sleep. So do I.

– Casually walk by and mention Santa in passing during a sibling war zone….in July. Hurried apologies come spilling out of their mouths as their horror-stricken eyes flash forward to a Christmas Tree void of gifts while you get to smirk in joyful silence.

Do you have any passive aggressive parenting life hacks you’d like to share? Sound off below!

Friday HaHa: The Art of the Sentence

Do you ever – hold on.
Just a second, kiddo, I’m talking.
Ok, sorry about that. So anyway, do you ev-
You have not been interested in speaking to me this ENTIRE time until now! PLEASE WAIT.
*DEEP BREATH*
*opens mouth to speak*
AHHH! What’s wrong?! HOLD ON!! *run* *save day* *check for blood*
Of course when I turn my back, that happens. OK SO. As I was saying:
Do you ever have one of THESE conversations?
(And you actually count this as a conversation because you are a parent now)
whereyoualmosthavetospeaklikethemicromachinesguytogetafullsentenceoutallatonce?

If you had a TV in the 80s, you probably remember this guy.
Clearly a dad whose kid needed something as soon as the director yelled, “action!”

Where, by the time you can utter a complete thought, you’ve forgotten what you were going to say?
It’s especially fun when the poor person on the other side of this “chat” is ALSO trying to speak.
You two end up speaking and it sounds like how an interpretive dance may look:
*speak a few phrases, look down, look across the playground, run forward while looking backward still trying to speak, dip, grab child, airplane, airplane and glllliiiiiddddeeee into the next few words*

.Fin.

A holiday weekend is fast approaching. You may be around family, friends, friends of friends, and/or that coworker (you know the one). Remember, if you need a fail-safe exit to an awkward conversation, stand next to your child and open your mouth. They are tiny fire escapes with legs.

Happy Haha!

Who’s Your Hulk?

Bedtime stories often are the same books over.

and over.

and over.

I can recite a few fan favorites by heart as I’m sure each and every one of you can, too. Even when we throw in a few new picks, the boys always come back to their tried and true books. We have started reading 5 Minute Avengers Stories, and let me tell you, the boys love it. In five minutes, I can turn those boys into glassy-eyed book zombies. I admit to glossing over a few sentences and adlibbing to get the point across in less time, but nonetheless, they stay fully engrossed with all of the superhero antics.

Last night, one particular story about the Incredible Hulk gave me pause. In it, everyone on the outside saw a loud, angry, monster. Hulk knows that isn’t all that he is. He’s sad that people stop and stare at him when he is out and about because he looks and acts differently than others. When he does try to kindly approach some people on the street, Hulk overhears them calling him names so he walks away, angry. He smashes something, further reinforcing the claim that he is only a monster. Hulk recognizes he is misunderstood, save the Avengers. They know that yes, Hulk is loud and often can’t control his emotions, but that he also protects everyone with this uniqueness he has been gifted with, and that he has a truly loving heart. Of course, Hulk has a speech delay as evidenced by his catchphrase “Hulk smash!” so he can’t fully communicate this. I don’t want to spoil the story for you, but he saves the day, and Everyday Citizen learns that it’s okay to be different. (Insert Reading Rainbow music).

As a special needs mama, this story resonated with me and got me in the feels probably more than the author intended. It made me think of my teen with autism. Not only are we in the throes of teenagedom , but Aiden also has a speech delay and is often misunderstood. He can look shy, (and trust me, this kid is NOT shy), but this is because he gets completely lost when it comes to social interactions with people outside of his “Avengers Squad”. What can come across as a tantrum is really a meltdown because his brain is trying to process everything all at once and he is in a sensory overload. In all of this though, his heart is gold. He turns into a puddle of mushy fluff when it comes to babies. He always wants to lend a helping hand. He is kind, but like Hulk, he has a uniqueness about him that you have to accept.

Lief is my kid full of emotions. He is quick to burst into tears if things aren’t Just So (whatever the Just So Du Jour happens to be in that moment). He’s five and full of spirit. He has no shortage of words, but does fall a little short in the attention span category. He is LOUD and always has GREAT IDEAS, even if you’re in the middle of talking about something completely different. He’s quick to tell you that you are “breaking (his) heart”, but also about a new word he can read, or an amazing song and dance routine he has come up with on the spot. Like Hulk, his emotions get the best of him. Like Hulk, he is truly kind and protective of the world around him.

Who is your Hulk? Is it your child with special needs? Is it a kiddo whose square peg learning will never fit in the round hole? Is it the neighbor down the street that comes off as crotchety, but is simply lonely and needs a friend? Could it be that person you have sized up based on nothing more than assumptions, but never really got to know? In the special needs community, we are always educating and advocating for acceptance, but I challenge each of you, myself included, to do the same in the “everyday world”. Find your Hulk. Look past the big, green, monster and  see someone simply Incredible.

World Autism Day

World autism day!

We have entered upper level autism in our house: teenagerdom puberty. (Dun-dun-duhhhhhhn!!!!)

We are balancing eyerolling, complexion issues, a passion for washing machines, the want to wear basketball shorts year round, queen, gangsta rap, contemporary christian YouTube videos, svu, the movie Robots, a hate for sudden loud noises, a disdain for being told no, sassy back-talking muttered under the breath, the want for friends, the need for privacy, the refusal to sleep anywhere but his couch in the living room, slow but steady progress towards adulthood, academic frustrations, the sneaky snack monster, the shout of “Mother!” when hes annoyed that immediately makes me sing Danzig in my head even if I’m fuming, and his insistence that he gets the front seat so he controls the radio….

…we balance all of that with letting go of what we assumed about Aiden when he was a baby. We let go of the wants WE think he Should have, and enjoy this amazing kid that he is. He is such a typical teenager in many ways, and in many ways he is not, making him perfectly Aiden.

I remember being terrified of this phase, TERRIFIED, but we got here, we withstood the storm, and we have started another leg of our journey better prepared, but still curious about where our adventure will take us. With Aiden as the captain of our Autism Ship, it’s guaranteed to be something incredible.