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

 

 

©2016 RRRIOTmama

 

 

©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.

 

©2016 RRRIOTmama

 

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

 

©2016 RRRIOTmama

 

 

©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.

 

 

 

©2016 RRRIOTmama

 

 

©2016 RRRIOTmama

 

 

©2016 RRRIOTmama

 

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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Day One: Today Our ABA Adventure Begins!

Originally I had planned on getting the RRRIOTmama site a bit more situated before Riot’s first day doing ABA therapy, but I’m not stupid enough to think that anything I want to do can actually stay on a strict timeline with a dictator toddler in my home. SO, today crept up on me slightly faster than I anticipated… but I could not be more thrilled or excited for my little man’s first day with his new teachers/therapists. I want to make sure I get this initial post up about his first session, but I will backtrack later this week and fill you all in on how we even found out Riot was on the spectrum.

How many new things are you ready to learn?! THIS MANY new things!!
How many new things are you ready to learn?! THIS MANY new things!!

NOTE: To make this easier from here on out, I will just call them teachers, since that’s exactly what they are here to be, and I will refer to them by initials.. Because just like when you are at the bar, names don’t really matter, do they? Yea, no, they don’t. Also, I’m well aware that my apostrophes aren’t showing up. I assure you, they are there. It’s been a week since I bought (?) this website so you’d think I’d be a pro by now at coding, html, css, __insert random interwebz jargon__, BUT I am not. SO I will solve the apostrophe catastrophe at a later date.

We got ready for this morning just as we would any day. 100% last minute – rushing around cleaning up the house, eating breakfast while getting dressed and watching Bubble Guppies at the same time. Normally on Mondays only E will be here teaching him from 12-2:45, but today we hit the first day jackpot with her, V (his team coordinator), and M (his teacher from Early Intervention that he’s been seeing once a week since November). I’d be lying if I said I wasn’t completely scared shitless that he’d have a meltdown and not be able to handle nearly 3 hours of structured playing/teaching, with some new people to boot. But, per usual, I am one proud mama. As I type this there are only 20 minutes left of his session and it has gone absolutely outstanding. I feel like today was my boy’s first day of college! I’ve been watching from the kitchen and I’m giddy thinking about all the new milestones he’s about to tackle. samuel_beckettE and V arrived together and Riot greeted them at the door. He now thinks that whenever our doorbell rings, whoever is there is going either be bearing a bag filled with educational toys to teach him or.. a pizza. (Sorry in advance for the disappointment and/or confusion on both of our faces when you show up to hang out empty handed.) He ushered them into our living room and took a quick inventory of what E was.. packing.. in her bag, saw that she brought that real good stuff (a bubble wand) and decided they could stay.

Today went even better than I could’ve imagined. When he was clearly getting hungry and wanting to nap, he didn’t get cranky, didn’t play the toddler card and start acting like a lunatic or feral animal.. I’m keeping my fingers crossed and welcoming all of the positive vibes in hopes that tomorrow and the rest of this week go equally as well! 

If you’re a mum, you know the odds are not in my favor. Toddlers are a completely unpredictable species and have hundreds of different personalities. Their poker faces are flawless. Do not trust them. You never know what you are going to get.

V is his team coordinator so she mostly asked me questions and had me sign a bunch of consent forms. She noted what sign language Riot used regularly and unprompted. I specifically chose this Autism Specialty Service provider because of the amount of data they collect and the training they make sure to do with the parents as well so that even when his teachers aren’t here, he never stops being taught whatever it is they’re currently working on. They’ve already written up a thorough goal list for Riot and it’ll be reviewed every 3 months. If at that review he hasn’t met X number of goals, they switch up their teaching approach to ensure by the next review they’ll have a better outcome.

Tomorrow we’ll be back at it bright and early. Two sessions: 9-12 and 2-3:30. Riot rarely wakes up before 10am since he is a well adjusted teenager. Peeling him out of bed at 8am for breakfast should be a total shit show!

XO-C