THE NUMBERS ARE IN.

Riot’s ONE Year Early Intervention

Re-Evaluation

 

©2016 RRRIOTmama

 

I’m just going to get this out of the way now: This post is crammed with stuff you should know if you have a spawn under 3. Click on the images and infographics to expand them in a separate window and read what each has to offer.

okay.. AHEM.. so, last Wednesday was Riot’s one year re-evaluation with his early intervention provider. I hardly knew what E.I. was pre-motherhood so I’m guessing if you’re new to the game you’re in that same boat. Here’s the quickest, dumbed down summary..

Every state has an early intervention program. Their services are 100% not paid for by you. Early intervention provides IN-HOME (yes! you don’t even have to leave your house!) therapists/teachers for children 0-3 years old that are even slightly delayed hitting their milestones. Or if they have a birth defect. Or if they have a genetic disorder. Or if they’re preemies. Long story short, nearly all kids are eligible unless you’ve birthed an overachiever. You arrange having them come to your home  for an evaluation and if your kiddo qualifies, they get tons of free help. CLICK HERE for more legit info.

Free. Help. Two words every new mom loves to hear.

 

©2016 RRRIOTmama

 

 

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©2016 RRRIOTmama

 

When Riot was 6 months old we had an elective E.I. evaluation done so we could make sure he was ahead of the game.. and sure enough, he was. At 6 months old, when a baby cant talk, walk, or fend for themselves, its pretty hard for them to score so high that theyre ineligible for E.I., but..

bla, bla, bla, bragging, bragging, more bragging.

 

©2016 RRRIOTmama

 

 

©2016 RRRIOTmama

 

Fast forward a year to an 18 month old Riot days before he received his ASD diagnosis.. His SLP suggested we have an E.I. evaluation done again, so we did. Keep in mind that up until talking Riot had hit all milestones way way ahead of time. He had a few words around a year old and then we slowly realized not only did he stop saying those words, but he was no longer trying to learn new words. At all. Just 12 months after his first E.I. evaluation and the numbers show a huge developmental regression. His numbers dropped in each of the categories they test, but the biggest loss was dropping 29 points in expressive and receptive communication. And then down 20 points in personal/social interaction.

 

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At some point during those last 12 months, he had lost his voice.

 

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©2016 RRRIOTmama

 

damn.

reading over that 18 month eval brings on all of the emotions.


Once a child qualifies for early intervention, you have an IFSP meeting with their team coordinator.. and some other people that I can’t remember what they do. You decide on goals for your kiddo to work toward and then sign a million papers and get two million yellow copies of them. The two infographics below will tell you exactly what makes up an Individualized Family Service Plan (IFSP) and the different types of specialists that will make up your Early Intervention All Star Dream Team. Shoutout to UNDERSTOOD.org for compiling all of this info together in a way that isn’t too overwhelming. How did I not find their website when I was in over my head right when Riot was getting started? insert all the eyerolls.

 

©2016 RRRIOTmama

 

 

©2016 RRRIOTmama

 

Riot’s entire IFSP was communication oriented. Forget anything else he could improve on, there was only one goal.. For Riot to learn how his brain worked, and in turn, be able to communicate his wants and needs to me or whoever else he was around. I wanted him to be able to giggle with other kids while they played together. Or, even to be able to connect with another human over a toy enough to yell, “no! mine!”. At that time there was no interacting and playing with anyone else, whether it be another toddler or an adult. He wanted to do his own thing, play on his own, uninterrupted. I thought it was great that he was so independent.. but, he was TOO independent.

All I really wanted was for one day to hear him say, “I love you, mumma”. I’m still waiting on that one. He tells me he loves me every day, but not with that exact sentence and how I’ve always imagined it sounding in my head.

Goals were on paper. A weekly schedule was set and off we started! Just in time too since days later we got word of his autism diagnosis.. and that diagnosis meant more in-home therapy.. 20-25 hours a week of “intense autism specialty services” therapy, aka ABA. It took about two months to get all that set up and running.. and that was just enough time for early intervention to build a solid foundation for them to work off of. E.I. wasted no time. First, the bare essentials of signing – more, open, for me, eat, drink. While constantly drilling him on those signs, they paired it with forcing him to look at our mouths to see the shapes they made when saying the word itself. While that became nonstop background noise during his sessions and everyday life, they worked on teaching him that he had to sit when they initiated play with him. This was a big thing. He never sat, always squatted.. because within seconds he’d remember that he didn’t want to play with you and he’d be off doing his own thing. So, ya, sitting – whether he wanted to play whatever was in front of them or not. Once he came to terms with the fact that life was going to be a lot easier if he just bit the bullet and sat down instead of fighting everyone, he had to learn how to transition smoothly from one toy to the next.. and cleaning up whatever they’d been playing with before choosing a new toy to play with. This was hell. Because this was something he definitely needed to learn how to do, play time was always being manipulated into a learning opportunity.. So, it was like he finally stopped getting angry/annoyed from them taking his hands to practice signing, got the sitting thing squared away, he’d pick out a toy interesting enough to play with (and even let them play along too), and then, wait!.. learning opportunity!.. Riot time to clean up this toy you were having fun with and pick out something new from this handful of things you don’t really like at all. It was horrible to watch. Don’t get me wrong, I fully understood why it was being done, but that doesn’t mean I didn’t regularly excuse myself to the bathroom to cry for a minute. A year later and there are still times every once in a while where I see Riot struggling and getting angry at his teacher when learning a new skill and my eyes start to water, I get a knot in my throat, and just want to yell, “give him a break today! don’t go so hard on him!”.. but, I don’t because cutting some slack when things get tough and letting Mama Bear’s emotions interfere with the game plan.. giving in and doing that kind of shit.. even if it’s only once in a while.. doesn’t get you the unbelievable results and off the charts progress that MY kid has accomplished in just 12 short months.

 

 

This is the section where you can sub in every past post on rrriotmama. tons of updates. bla,bla,bla, progress, bla, bla, bla. tons of bragging. et cetera.

 

 

 

©2016 RRRIOTmama

 

now, i’m just going to leave that deviation iq chart there for you guys to reference..

Every year that your child receives  early intervention they’re required to do an annual re-evaluation to make sure that they are still scoring below a 77 in at least one section of the Battelle, making them eligible to continue E.I. services.

If the numbers are too high, the only way to bypass this eligibility qualification rule is if your child has a clinical diagnosis of a developmental delay.

*Remember, no matter your score, diagnosis, or favorite band, ALL children age out of early intervention at 3 years old. Period. The end.

©2016 RRRIOTmamaSo, last Wednesday was the big re-eval day. Riot’s early intervention main office hired extra security and at 9AM his dad and I met there to cheer our boy on from the sidelines. (I kid, I kid.) (..but, for real, I wonder if they did..) I wish I could think of something that wasn’t so clichée, but.. just.. wow.

HARD WORK PAYS OFF.

For 12 months my boy busted his ass every single day.. 20+ hours a week with developmental specialists, an SLP, and a handful of ABA teachers.. focused on learning everything he possibly could and didn’t allow any of his parent’s bullshit affect him or slow him down.. He learned basic sign language then traded that in to be able to say all the words he could store in his brain.. and sentences! He’s made friends! He says hi to them and remembers their names when we show up for playgroup each week! Sometimes he’s a total asshole to other kids! He has the ability to connect with other kids enough to be a “typical” asshole toddler and scream, “MINE!” when it’s totally not! I can’t blow dry my hair for 10 minutes without him at the bathroom door begging me to sit in the living room and play with him. Pretend play! That was a thing that didn’t exist in his world before!

He talks! And talks and talks and talks. It’s 11PM and I can hear him in bed talking to his Owl! And I can understand what he’s saying. He talks.

I have never been so proud of another person in my life. Riot is one of the few.. He is only still eligible for Early Intervention because of his ASD diagnosis.. He scored so high in every section of the evaluation that, judging by the numbers alone, he would no longer be eligible to receive any more services from early intervention.

©2016 RRRIOTmama

These numbers are just.. unbelievable.

Since his evaluation at 18 months old, he went ⬆️6 POINTS in cognition, ⬆️12 in motor development,

⬆️27 in personal/social interaction,

and here’s the big one…

⬆️33 in expressive and receptive communication.

Not only did he score high enough across the board to no longer qualify for E.I., he didn’t even come close to that 77 mark in any category. And let me be clear when I say this – we have never strived for neurotypical. Neurotypical has never been a goal and Riot will never be neurotypical no matter what the numbers say. He will always be someone with autism AND while being on the spectrum, was also able to learn an incredible amount about himself, the world around him, and how to connect, interact, and communicate with anyone he came into contact with.

Proud Mama Moment #987632459:

In comparison to where he had regressed to one year ago, Riot is back at it, currently screaming from the top of his lungs and developing right alongside the rest of you 2.5 year old norms.

©2016 RRRIOTmama

I am his biggest fan.

 

 

 

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©2016 RRRIOTmama

 

 

©2016 RRRIOTmama

 

Driving Me Insane & Breaking My Heart


As much as I’ve wanted to write up something new every day to share on RRRIOTmama, there are only so many posts you can write about “oh, ya, more progress!”.. Not only does it take away from the excitement, but unless it’s your kid it’s happening to.. It’s obviously not all that exciting to keep hearing about. And then the past two days happened.

I think I’ve mentioned this before – I obviously never forget that Riot is autistic, BUT where he is considered “high functioning autistic” and made so much progress over this past year, we don’t experience nearly as many symptoms as a lot of autism families do. Because of that, when out of nowhere there are two consecutive incredibly difficult days with Riot, it has me feeling so emotionally and physically drained.

I feel horrible saying this (and I’m sure other autism mums can relate), but he drove me insane the past few days. As soon as he went to his dad’s this evening I instantly missed him, but at the same time felt like “oh, thank god!” But these two consecutive days were polar opposites. Yesterday he was up my ass and needed constant sensory input. Not only was he being a typical toddler wanting me to play with him every second of the day, but he was SO clingy, wanted me to squeeze him, wrestle with him, touch touch touch! There was NO personal space. He came into the bathroom and sat on my lap while I was peeing. He bit me 5 times and then instantly said sorry and kissed where he bit because he knows that’s absolutely not cool and that it hurts me.. But in that very moment it was something that he needed to do for whatever reason for him to self-regulate. I was short and snappy with him all day and then at the same time felt so bad because I knew he was just having a day where he was feeling more of his autism symptoms than he normally does.

And then there was today. Today was so draining. At all times I was constantly feeling annoyed, frustrated, heartbroken, sad, defeated, then frustrated all over again. Today was nothing like yesterday. He absolutely did not want to be touched. There were many things that he wanted, but couldn’t tell me what they were. He was hungry, but shot down all of his favorites. I finally got him to eat a popscicle.. But then he decided to touch it with his finger and when the tip of his finger then had purple popsicle he lost his shit and wanted nothing to do with it anymore.

How dare that popsicle?! So rude!

Then he unwrapped his second One Week Until Christmas Countdown book. He loved it! (mom win!) Mickey Mouse’s Clubhouse Christmas. But then I did something out of line and offered to read it to him. All hell broke loose.

Uhhhh sorry for trying to be an okay’ish mom by asking you if you’d like me to read you a Christmas story? A simple “no” would’ve been just fine, but instead you would’ve thought I took the book away, told him I gave all of his Christmas presents away and threw out all of the toys he owns. And that I was never going to feed him again. And he had to sleep on the tile floor from now on. And he was never allowed to use the iPad or watch TV again.
He looked at me so offended and then instantaneous hysterical crying combined with dramatically running away from me into our bedroom. But then also running back out periodically to make sure I was still the asshole mom that offered to read a new book to her son. Yup. I still existed. So he’d burst into tears again and run off, closing the door behind him. This went on for just over an hour and then it was silence. I walked to the bedroom to find him in bed, lights off, watching something on YouTube. I hated that I needed to interrupt this peaceful moment, but his dad was en route to pick him up and we needed to get him ready.

It’s not abnormal for Riot to fight me on changing his diaper. It’s actually hit or miss.. He will either lay down on the floor for me to change it with no questions or it’s like chasing/capturing a rabid animal. Sounds like an exciting gamble, huh? But, like everything today, this particular diaper change and needing to get dressed war was amplified by 12. Like a bandit, I got the dirty off fairly quickly. Then he transformed into a crazy, hysterical, naked, screaming toddler running away from me whenever I got within 5 ft of him. He was sobbing. Normally reminding him that he’s getting ready to go out or telling him it’s because daddy is on his way to get him is enough to to reel him back into being as rational as a toddler can be so he can be okay with the diaper change/picking out a shirt/getting dressed/shoes/socks/jacket/hat.

At one point he darted away from me and I found him “hiding” from me in the farthest corner of the pitch black bedroom while he continued to sob. This was a first. It broke my heart. As downright infuriating as it can be dealing with a defiant, angry toddler, it brings me to tears not knowing or being able to figure out what my boy needs when he’s this kind of distressed all day. Just one meltdown after another. It makes me feel so defeated. Ugh. Damn. I know there’s not much more I can do other than give him his space so he can figure out what he needs to do in order to calm down, but there’s nothing worse as a mom than seeing your kid bawling their eyes out, trying to catch their breath, and not being able to give them a hug or even kneel down next to him without making the situation way worse.

The end of that story is when dad arrived he had to come inside for backup. Riot never stopped crying, but daddy was able to get him dressed and out. When I closed the door behind them I heard Riot continue to cry and say “mummy.. mummy.. mummy” even though he had just spent the past hour not allowing me to be near him. Then I cried for a few minutes, obviously.

 

WOW. Okay. Let’s wrap this post up on a happier note! For 3 Christmas seasons now we’ve instilled the tradition that each night the week leading up to Christmas Riot get’s to unwrap one new book. Yesterday was the first day this year for him to unwrap a One Week Until Christmas Countdown book and he got Elmo’s 12 Days Of Christmas. Huge hit. He thought it was dying laughing at me as I was tripping all over the words by the last page. Today he got Mickey Mouse’s Clubhouse Christmas. He was loving flipping through it and pointing out all of the characters. (Obviously we still haven’t read it yet.)

©2016 RRRIOTmama

RRRIOTmama is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. This post contains affiliate links.. which just means if you make a purchase through one of my links, you won’t get charged any extra, but Riot and I will make a couple of dollars to save up for take-out at the end of the week!Every penny counts.. thanks for helping us out!💙

 

ABA: HOW I KNOW THAT SHIT WORKS. 

RIOT’S FIRST SWEAR WORD.

If you have the absolute pleasure of knowing me IRL (.. or, no, not even.. I’m sure you’ve gathered just from what translates through this plastic internet bubble I live in..) than surely you know that I’m unapologetic with my choice of descriptive cuss word adjectives. There may have been a point at the beginning of Riot’s existence that it crossed my mind to attempt to filter out some of my most favorite words since, you know, I was now a mom and the rumor was that these kids copy everything you say. Clearly it was a fleeting thought between putting the cookies down and deciding which Dominos coupon would get me Cinnastix along with everything else I wanted.

The infographic right below this blurb is great for a point of reference.. So lets peak at that for a second.

Pathways.org

Okay- now for a quick recap on where Riot was at around 12 months: yes, around 10-11 months he had said mama, dada, and pasta. And, good lord, that child never shut up. Noise. Constant. Noise. But, yea, other then those 3 words, you can forget everything else this chart says was supposed to be happening, because it was definitely not. The fact that he was not imitating any word sounds or trying to make an effort to speak my language was exactly what I said at his 15 month well-baby check up.. And wearing my Mama Bear War Paint, I made sure we walked out with a referral to see an SLP.

Just to be clear though, there was nothing alarming or some big red flag waving.. probably because whenever he uttered his last mama, dada, pasta just completely blurred in with his round the clock shouting, giggling, humming white noise that filled our home. And, at that time, I hadn’t been searching all over the interwebz for speech development timelines to cross reference; I just knew that there was either something up or he really just thought we had nothing in common to make small talk about everyday. (I’d be lying if I said that didn’t cross my mind quite a few times.)

okay, okay, okay,

let’s get to the point here!

ABA: That shit works. There’s no question about it. I know I suck and slacked on writing up anything about Riot’s team IFSP review meeting back in October, but I’ll just sum it up by saying his ABA provider recorded a video of him killin’ it during some discreet trial training and will be showing it to all of their new BCBAs they hire. Uh, yea, obviously here’s the part where I’m all LOOK AT HOW FUCKING RAD MY SON IS. Keep in mind that just over the summer he was still non-verbal.

OH and you know those little clickers that bouncers use to keep track of how many people are in a bar so they don’t go over capacity? Last week Riot’s team leader tells me that they are bringing one to a session next week to add up the words he’s mastered.. because  they suspect that that number has just suddenly launched over the 200 mark, in which case she’ll have to write all new programs and goals again to make sure he’s still as challenged as possible with learning.

200. like, what?

At his IFSP meeting on 10/28 he was at 39. This kid does not fuck around.

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I swear I’m getting to the point of this post! We talk now! And joke around! And sing together! That stuff was always happening before, but mostly with me just looking even crazier than I am since I would just be carrying on the entire conversation by myself.. speaking for the both of us.

So, we were out getting stuff done today and I forgot that we had bought popsicles about 3 errands prior. Of course the second we walked in the door, my dude is in the kitchen asking very specifically for a “purple pop”. The half-melted ones. I distracted him for a few minutes with his iPad praying that they’ll beat science and be frozen again within the next 5 minutes. HA! 5 minutes! Riot gave me maybe 2 before he remembered I was supposed to be fetching him that popsicle. Now, he’s in my room. I’m in the kitchen. I tear open the wrapper and that damn half-melted purple pop went flying through the kitchen and landed with a SMACK on the floor as I laughed and yelled OH, SHIT!

I heard him running out to assess the damage. He spots the popsicle, locks eyes with me, and shouts..

OOOOH, SHIT!!

and the biggest belly laugh that I joined in on.

Proud mama moment #9346782.

It was amazing.. Not because I’m happy that he swore..

..But because now I’m a mum with a child that copies everything she says.


Work Hard, Play Harder.


“If a child cannot learn in the way we teach.. we must teach in a way the child can learn.” -Dr. O Lovaas

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I can’t believe we’re just a week shy of it being one year since Riot was diagnosed with autism spectrum disorder (10/28/2015). That sentence alone brings on such a tidal wave of emotions, memories.. all the feelings! Two weeks ago Riot and I drove into Boston for his one year follow up appointment with his developmental pediatrician to go over his progress and discuss what our next set of goals would be. With the biggest smile on my face I’m the proudest ever to report back to anyone  reading this that his doctor was absolutely blown away by all the skills he’s learned in just 12 months. People often forget that he understands nearly everything that is said to him (because he doesn’t have all the words just yet to respond), but the night before and on our way into the city I reminded him what this appointment was for and how he should walk right in like a big boy and show off everything he now knew how to do. And he did! While the doctor and I caught up he went down the list giving examples of all his new tricks: he was signing to ask her if he could play with the toys she had on the shelf.. which he pointed to (if you’re not an autism parent then you probably don’t know that pointing to show you something is a big deal), pairing those signs with words.. WORDS! Truck! Car! Percy! Thomas! Owl… Hoooo-Hoooo! He sat at the tiny kids desk in her office and played.. making the toys all talk to each other and making propeller noises while he held up an airplane that was using the windowsill as a runway.. Imaginative play! Then he stopped to ask me (signing and verbally) for a snack and something to drink. Yup. It literally went as good as it could’ve possibly gone. I couldn’t have done it better myself. Or, like, if I had bribed him with a tub of chocolate frosting (he’s definitely my kid) and unlimited hours of iPad time. Not to mention he was so well behaved for the entire 60 minute appointment and all of the travel time.

That little boy, man.. I’m telling you.. He’s my masterpiece.

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I’ve heard stories of families who have had to jump through hoops in order to get their child diagnosed so they could get all the right help for them. Stories of parents going from one doctor to the next, advocating for their kiddo, searching for answers, and hoping for a diagnosis on paper because then and only then would it be real.. And from there they could fight with every phone representative from their health insurance company.. until finally therapies and autism specialty services were set up and ready to start! Almost every autism family that I’ve met has a similar story to this. Thankfully, Massachusetts is one of the best states to live in if you have autism or are caring for someone with autism.

“If you have a child on the autism spectrum, where you live has never mattered more.” –AutismHealthInsurance.org

StateABAbenefits

Click here to check out what the state insurance coverage for autism and autism speciatly services is like in each of the 50 states and the District of Columbia.

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I’m grateful that our ASD diagnosis story was nothing like the dozens of others I’d heard from friends and acquaintances. Ours came quite easily, actually. So easy that.. I honestly had no idea it was even happening. How embarrassing.

some lines.THE TIMELINE

It went down like this:
On a random day in the last week of August, 2015, was Riot’s 15 month well baby checkup. Up until that point I never had any questions or concerns regarding milestones to talk to his ped about. This time I went in knowing what I wanting. I told his doctor that even though he may still be on schedule for being considered a late talker, I wanted to make an appointment with an SLP. Thankfully his pediatrician knew me well enough to know that I wasn’t going to take no for an answer. After his generic some kids are just late talkers spiel, he referred us to an SLP for an evaluation.

a line.

About a month, maybe 5 weeks at most, after that was the day we met the SLP. She commented how impressed she was that Riot was so advanced for his age. I specifically remember this was because he had spotted where she hid the key that unlocked the cabinet that held all of her most precious jewels.. AKA all of her toys.. and, of course, then spent the majority of his appointment trying to keep her distracted long enough to pull off his first B & E

 

Around his first birthday he’d been saying mama, dada, and.. pasta. WHAT?! lol, yes. Now let’s pause for a sec so you can get a proper visual of what a one year old Riot looked like. The dopest one year old I’d ever come across.

oneyearold
 

I digress.. By this point (15 months) he was completely nonverbal. Months later I found out that this is the time period that a lot of autisitic families refer to as when their child “lost their voice”.. Since Riot only had those 3 words, it wasn’t something that stood out when we stopped hearing them. It seemed like he was just focused on mastering other skills instead. DO NOT BE FOOLED – just because he was nonverbal didn’t mean he was quiet. That boy never shut up!

Anyways, the SLP wrapped up the session by saying she was going to get in touch with Early Intervention so they could come to our home and do an evaluation with Riot. She explained that because Riot wasn’t talking yet that he would likely qualify for Early Intervention and they would set up an SLP to come to our home for weekly sessions. Wait.. So we won’t even have to leave the house?!? Sign us up!! Early Intervention evaluations took some time to schedule and then after that you have to wait a bit while they find a therapist to fit into a set weekly schedule for you. The timeline to get the whole thing up and running could take a couple of months. The SLP said that she had available slots open and could work with Riot until EI began. Before saying our goodbyes (or.. not saying goodbye) she had us make an appointment (about 3 weeks from then) with a developmental pediatrician in our network.

a line.

At that point in time, I had no clue how any of this shit worked.. health insurance in general, needing referrals, not needing referrals, in/out of network, HMO, PPO, PCP, Obamacare, EPO.. Actually, if we’re being all honest here, I’m still winging it. Leaving the SLP’s office that day I was happy and satisfied and under the impression that seeing a developmental pediatrician was something that we had to do in order for the SLP to take Riot on as a regular patient.

Fun Fact? If you search on google images for "winging it" it's all stuff about motherhood, haha! So, I guess I'm not alone!
Fun Fact? If you search on google images for “winging it” it’s all stuff about motherhood, haha! So, I guess I’m not alone!

a line.

Fast forward 3 weeks, Riot and I were late, per usual, but we made it to Boston for the appointment! The doctor was nice; there wasn’t anything extraordinary about her. She spent 60 minutes doing a play-based evaluation and that was that! She booked me an appointment for two weeks later, said I was not to bring Riot along, and that’s when she would go over her evaluation findings with me.

I cannot stress enough that I sincerely thought this meant she was going to sit me down and say “Yes, you were right. Your son will, in fact, benefit from seeing a speech therapist.”  then hand me some award for being the world’s okayest mom and wrap it up with a high-five.

some lines

Now two weeks have gone by and we haven’t thought any more about the evaluation with that doctor. Riot goes to his grammy’s for the day so I can go to the recap appointment.. and I swear, before my ass even hit the chair she said, “So, I’ve diagnosed your son, Riot, with AUTISM SPECTRUM DISORDER. I’ll now go over the critieria from the DSM-5 that he met in order for me to come to that diagnosis.” She went over her 4 page written evaluation with me and recommended that Riot receive 25-30 hours a week of intensive in home therapy.
Wait. What!? WHAT?!
Let me take a second to say that is wasn’t the diagnosis that took me by surprise. You can ask any of our closest friends and they’ll confirm that I’d suspected ASD for some time. Pre-mom-life I would’ve said that a mother’s intuition was total bullshit.. but, it is so so SO real. Little quirks and things began standing out to me as early as when Riot was just 8 months old.
whoa whoa whoa.. wait a sec though.. I had NO idea that we were seeing this developmental pediatrician for an ASD evaluation. There was never any mention of anything autism. I had not mentally prepared at all to receive that kind of loaded information. I literally didn’t even know that card was on the table!

Before this life altering news, I had initially planned on going to the appointment then treating myself to lunch at one of my favorite city spots and happily walking up and down the aisles, daydreaming at Blick Art Supplies since it was on the same block. Without realizing it, I skipped my solo lunch and art store date and just got my parking validated instead.. I remember sitting in my car in the parking garage for a while without turning it on. It was grey out, drizzling, and humid for October. Come to think of it, the weather was almost exactly like it was yesterday. I wore cheap black flats and had walked through a puddle so now my feet were freezing. The weather along with how uncomfortable my cold, damp feet felt perfectly matched the mood I was in. After the initial shock subsided, the next feeling was one of relief. Now that there was a diagnosis, we were one step closer to learning all sorts of new stuff. To me, this was incredibly exciting. Oh, and this meant I hadn’t been crazy (LOL, or any crazier than normal) every time I voiced or silently noted my boy’s little quirks. 

Riot didn’t know it yet, but we were ready.

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I was able to get Early Intervention set up pretty quickly after the diagnosis. They started him slowly to get him used to the routine.. Only 2 hours/week for the first few weeks. I can’t remember whether or not I wrote about this whole process of researching ABA, choosing a specific provider, setting it all up, etc in THE ELEPHANT IN THE ROOM, but since Riot’s father and I had had a falling out right around the same time, I was completely on my own navigating all of this and making major decisions. There was a lot of crying involved on my end. It was incredibly stressful. But, looking back now I’m so happy I did it without anyone else’s input because I know I set up the best possible team and goals for my son. (SON. Son! It still sounds so weird to me saying that I have a son! Ha!)

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After meeting with Riot’s ABA team leader for the first time, I remember her telling me how a year from then (January 2016) I was going to be amazed by all the progress he’d made and how much he’d be able to accomplish in a seemingly short amount of time. Next, I remember thinking that she was full of shit with her generic positive pep talk that  she was obviously trained to recite to each family. 

. . .

 

WOW.. I’m eating my words now, huh?

Don’t get me wrong, I never doubted how smart Riot was and I knew he’d be able to learn whatever it was they were going to teach him… but I definitely did not anticipate that he’d be where he is today only 9 months since that conversation.

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How many other toddlers (aside from ones on the spectrum) do you know that have a time card working this many hours a week? And it doesn’t stop there. There’s no clocking out with ABA. These kiddos work harder than half of the adults that I know. Last May Riot had gotten up to 22 hours/wk, but right around when his dad and I split he lost one of his teachers due to.. I don’t know, she got her feeling involved or some weird shit that makes me want to slap her.. anyways, that cut a ton of his hours unfortunately. Things are getting back to normal with his schedule though! Since the end of August when we got joint physical & legal custody I’ve busted my ass annoying, ahem, I mean advocating and pushing for his team to get him more hours each week. And they have! In fact, I already have to update that weekly schedule I posted above because since then they were able to add hours again on Tuesday mornings. So, now we are up to 20 hours/wk of ABA therapy.

This is where all of the overtime hours come in.. After the teachers are gone for the day we are still working nonstop so that Riot can get the most out of ABA.
This is where all of the overtime hours come in.. After the teachers are gone for the day we are still working nonstop so that Riot can get the most out of ABA.

 

 

bla bla bla AUTISM JARGON bla bla bla

Explaining how autistic kids learn is confusing. Even though I get it and get how Riot, specifically, learns, I still manage to confuse myself when talking about it. Thankfully I found this stuff on the interwebz..

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This is the rundown of all the different ways a skill is taught and practiced over and over again until eventually the child can do it on their own, unprompted..

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And if you can’t imagine what each of those prompts would actually be in regards to teaching/learning a skill, these are great examples so you can have that “ahhh, now I get it!” moment.

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I’m going to leave this post to be continued because I have so much more to share/brag about the newest things my spawn has started doing over the past few weeks. If he doesn’t completely drain me of all my energy over the next few days I’ll be sure to write more and post! I’ll leave you with this quote I found, no idea who said it, but truer words have never been spoken! -Xo

 

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People, let me tell you ’bout my best friend.

Thank you, thank you, thank you to everyone who pitched in a few dollars to keep RRRIOTmama up and running!

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Alas! After weeks of no ABA, they have found a new teacher for Riot and she starts with him tomorrow! Fingers crossed that he hits it off with her and she sticks around for a while. While we waited for a new ABA teacher, early intervention kicked in a few extra hours a week so there wouldn’t be any regression.. and just those few hours over the last two weeks proved to be 100% worth it – Riot has had so many developmental leaps this summer with his communication that it’s mind blowing. He has words now! PLURAL! WordS! It’s amazing. Man, that boy makes me so proud. And for the words he hasn’t mastered just yet, he uses his sign language so accurately now.

People, let me tell you 'bout my best friend.
People, let me tell you ’bout my best friend.

He’s still on a waiting list through early intervention for an SLP (speech language pathologist.. Lingo, people!) to get added to his weekly therapy hours. That list must be hella long because he’s been on it since we started this whole thing back in November. insert all the eye rolls.  

 

So, I added a link to another blog that had an awesome Crash Course in Autism Lingo glossary.. The link is under Autism 101 all the way at the top of the page.. Right here..

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Now it’s there to stay. It’ll help you out if you’re wondering what the f*ck I’m talking about OR if your kiddo is newly diagonosed and your head is still spinning from their evaluation a month ago.

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If you have the honor of knowing me IRL (in real life, get with the lingo) then surely you’ve heard me refer to my Mom Group – 1,030 mums from all over the world who have little ones born in May 2014. The group lives on Facebook. Most of us came from similar forums while we were still pregnant (theBump, What To Expect, Baby Center) though we’ve gained some stragglers who were lucky enough to know someone that got them in.. And now, after purging sanctimommies and trolls a few times, we have really perfected the ultimate mom group.

15 People You'll Find In Online Mom Groups
15 People You’ll Find In Online Mom Groups

My village is my Mom Group and I’m not ashamed to admit it. I like my online mom friends more than most of my IRL friends. We have been there for each other not just for every milestone, but through every new job, new home, breakup, engagement, job loss.. You name it. With that being said, these amazing mamas have had my back and been phenomenally supportive over the last year.. And especially so since Riot’s dad and I went on our staycation to Splitsville. In all honesty, I didn’t even think that people  as nice or generous as my online mom friends existed in the world.. And I don’t know what I ever did to deserve having these women in my tribe, but I wouldn’t trade them for anything.

20 Reasons I Prefer Online Moms Groups Over IRL Moms
20 Reasons I Prefer Online Moms Groups Over IRL Moms

This is just one of the reasons from the ScaryMommy article above (and for real, you guys should read both of the links about mom groups that I’ve posted so far because they are hilarious and on point) that rings true.. 

#16 The Group Hug: Sometimes, life happens in a bad way. I have seen multiple mommy groups come together for an individual and their family, offering incredible resources of love, kindness, and support.

 

 

peace, love, and all of the positive vibes-

maybe