Alexis “All Access” Wilson (@allaccesswilson)

I got to share about Emmett using the same podium Jordyn Zimmerman stood behind moments before at the All Means All Special Education Conference in New Jersey. Emmett is my why, but my advocacy for inclusion and appropriate supports isn’t exclusively for him. Thank you @Glint by Ner Chat for the platform and creating tools that are truly accessible and bring accessibility into new spaces. @Beyond Disintegration may there be many more conferences ahead for our children. #AllMeanAll #ChildhoodDisintegrativeDisorder #SpecialEducation #AAC #regression

This isn't the brother relationship I pictured when having two sons. But how often do things actually turn out the way we expect? #brothers #siblings #autismfamily #specialneedsfamily #siblinglove

Speech practice at home usually gets a groan. Today Blake asked for more. He's working on r-controlled vowels in speech therapy, so I put them all on a Glint board, sent it to the TV, and turned on voice modeling. When he says a word correctly, it lights up behind him. No flashcards, no me correcting him. The board does the telling. Three words turned into "can we do more?" and I was not about to say no to that. #speechtherapyathome #slp #articulation #parentingtips @Glint by Ner Chat #creatorsearchinsights

Emmett is autistic and has childhood disintegrative disorder (CDD). At 4.5, he went through a catastrophic regression and lost his language, his play skills, and his safety skills. He is a complex communicator who uses AAC. He is also part of a clinical trial studying deep brain stimulation. A lot of it is watching closely, adjusting, and watching again. We go by what Emmett shows us. Mornings like this one tell us a lot. #childhooddisintegrativedisorder #deepbrainstimulation #Regression #ProfoundAutism #autismparenting

We’ve taught Emmett to many ways to communicate and have taken the approach that we’d hope that something would stick. So many things have in bits and pieces and we take whatever works. I never thought that he’d pick up a way to communicate from navigating his iPad. How cool! #autismparenting #nonverbalautism #nonspeaking #childhooddisintegrativedisorder #profoundautism

Being the mom of an unreliable speaker means I have to both presume competence and question if the words my son says matches what he wants to communicate. It also means making sure he knows he’s heard while holding a boundary. Visual supports with speech output make all the difference. Thanks @Glint by Ner Chat #autism #autismparenting #profoundautism #nonverbalautism #nonspeaking

We couldn’t have done this theme park visit to @🎢Canadas Wonderland without the accessibility pass. Entering from the exit meant waits were more manageable and we could be in and out before my feet hurt too bad. The other key support was Morgan. Part respite support, part big sister, part friend all rolled together into an incredible human. She was there for Emmett, Blake, and me stepping in with a push of the stroller, a chat in a long line, a joke when the ride spun too much, and some conversation that didn’t revolve around the stress of a theme park with a kid who elopes and flops. Notable mentions:vestibular input from the coasters, frenzy brain from the slushies, and Tom’s donut who saved the day when I realized Emmett’s mood shift was due to hunger. #autism #autismawareness ##autismparenting #wonderland @morgs

Blake is eight, so nobody is being left home alone anytime soon. I don't know what five or ten years from now looks like. Maybe Emmett will be okay being home alone too. Maybe we'd have a caregiver come to the house. Maybe Blake will be the one in charge with just the two of them. But Blake didn't need all the maybes. He needed to hear that being home alone is as cool as it sounds, and that one day he'd get to have it. With a caregiver in the house, it wouldn't feel like he was alone and in charge. #autism #profoundautism #childhooddisintegrativedisorder #autismparenting #autismsiblings

I'm looking for videos that show all of Emmett: who he was before his regression, what it looked like while it was happening, and who he is now. Emmett lost his language, play and safety skills at 4.5. He is autistic, has childhood disintegrative disorder (CDD), and is a complex communicator who uses AAC. He’s also part of a DBS trial targeting the reduction of self injury in autistic kids. If you've been following along, you know which moments stayed with you. If you're new here, scroll back through his videos and let me know which ones you think tell his story best. #CDD #childhooddisintegrativedisorder #autism #regression #AutisticRegression

Regression is written off as something that can happen with autism, not something worth studying, understanding, or preventing. Emmett went from a typically developing 4 year old to a profoundly autistic one overnight without a medical explanation (yes we’ve investigated). This happens. It used to be called Childhood Disintegrative Disroder and there are researchers who have found multiple differences between it and other forms of autism but they can’t find their research with CDD subsumed in the spectrum, silencing the most silenced group on the spectrum: the ones who lost their words. #childhooddisintegrativedisorder #profoundautism #nonverbalautism #autismawareness #autismspectrumdisorder

Emmett is autistic and has childhood disintegrative disorder (CDD). At 4.5 he lost his language, play and safety skills. He's a complex communicator who uses AAC. He's also part of a deep brain stimulation (DBS) trial for autistic kids with self-injury. When something shifts, we become detectives. Emmett can't always tell us what's wrong, so we look at everything around him and try to narrow it down. The hard part is that his DBS setting is one of the few things on the list we can actually change. But if we adjust it and the real reason was a new routine or a tummy ache, we may be changing the wrong thing. So for now we're watching closely and trying to decide. Parents of complex communicators, how do you figure out what to change first? #profoundautism #dbs #nonverbalautism #autism #creatorsearchinsights

Emmett’s been learning to protest and advocate for himself with his words and through AAC. For a long time we listened carefully to his actions. A hand out meant not to come closer, moving away meant he needed space. If we didn’t respect his boundaries, he would show us harder or run faster. He often says “stop”, “no”, “all done”, “space”, and “go away” but now he’s picked up some more subtle ways to communicate. At some point he picked up “yay” from someone who must have celebrated Emmett doing something he struggled with and Emmett’s taken it on as his own to tell us when he doesn’t want to do something. We all have our own ways of saying no without saying it directly and love that Emmett came up with this one that works for him. It feels like, “hey guys, I worked hard but I’m done now and that’s good enough so leave me alone”. #nonverbalautism #profoundautism #autismparenting #specialneedsfamilies #nonspeaking

I interrupted Emmett’s bedtime routine to try and capture him signing happy birthday to me (which he was doing moments before). Since losing his speech over 5 years ago, I don’t think he’s sung to me again until now. Love that he protests to advocate for himself. Shoutout to Blake who has sung to me every year and when I asked to draw me a family portrait this year he made me with his 3D pen instead. #nonverbalautism #profoundautism #autismparenting #specialneedsfamilies

Laptop, headphones, and approximately one million visual supports. The essentials. My bag has officially become a mobile AAC supply closet and honestly it's never looked better. Everything made in Glint by @Ner Chat, everything carried in my @Poppy & Peonies Multitasker. What's the one thing you never leave home without? #slp #aac #whatsinmybag #specialeducation #specialneedsfamilies

Emmett often sleeps sideways right up against his headboard because he likes to be tight, so when I walked in and he was totally content, I started filming thinking that's all it was. Then I realized he had been jumping on his bed, the mattress had moved, and he'd ended up between the wall and the mattress, under the headboard. It might look like he's asking for help, but he was lying there completely happy being squished. Emmett is an autistic nonspeaker and a sensory seeker, and for him, the tighter the better. Then there's Blake. Blake is 8 and almost always in motion, bouncing, wiggling, dancing, and staying still in one spot is not something that comes easily to him. So while Mike and Emmett sat together on the front bench, Blake was busy dancing around them. Same house, same morning, and two kids needing completely different things to feel good in their bodies. #creatorsearchinsights #neurodivergentchild #asd #adhd #specialneedsfamilies

With Emmett able to access his language more easily, we’ve been learning more about him and his preferences. I love that his idea of a late night snack was liverwurst. #autism #nonverbal #nonverbalautism #autismparenting #profoundautism

At 4.5 Emmett had a catastrophic regression and lost his language, his play skills, and his safety skills. He is a complex communicator who uses AAC, and he is currently in a DBS clinical trial. When we realized the few TV options on his AAC werent enough, we decided to let him scroll through our phones to choose what he wants. And now he’s communicating with his voice. #autism #nonverbal #nonverbalautism #regression #autismparenting

Today Emmett pulled out a paper strip I made a few months after his catastrophic autistic regression when we realized the skills he lost weren’t going to just come back on their own. He blew me away spelling his name and saying it. I’m still getting used to hearing him talk again. Hard to say if it was the DBS, therapy, his natural trajectory, or a combination of it all. But when it comes down to it, the why doesn’t matter. #profoundautism #autism #nonverbal #regression #nonverbalautism

I have been going to this cottage since I was a kid. It is one of my favorite places in the world, and over the years it has also become one of the most stressful. Emmett has run down the street. Emmett has run into the lake. Countless things have been broken. He ran into the lake this year too. But we were prepared, and there were enough people around that we laughed instead of worried. That is the whole difference. Same lake, same kid, different amount of support. This was the first time we brought someone up to stay overnight with us, and it was Morgan, who knows us and loves both kids. I spent the week playing with my kids instead of setting up for one thing while cleaning up after another. I am not doing a cottage week without overnight support again. #specialneedsfamilies #autismparenting #cottagelife #profoundautism #autism @morgs

Morgan did these sentence starters when talking with Emmett all week, and adding the walkie talkies made it extra fun. They were sitting right beside each other, so Emmett could hear himself come through the other talkie right away. She gives a sentence frame and then leaves the blank lingering. It was a game and a conversation. Not an expectation, not a lesson, not a right answer. It started with my name is When the questions got too closed or too boring, he mostly did not answer. But the silly ones, the stinky feet ones, those he was all in for. Emmett is a nonspeaker and a complex communicator who uses AAC, and he is talking more. I will admit his AAC went mostly untouched all week, and some of that is the nature of a week at the lake, running around in and out of the water. But seeing what happens when the right support is sitting next to him was amazing. Morgan, you were incredible with both of my kids. You took a trip away from home, to a place I love that is so often stressful, and turned it into somewhere we could all actually enjoy, where I could enjoy my kids instead of feeling like I was setting up for one thing and cleaning up after another. Thank you. @morgs #nonverbalautism #nonverbal #soeechtherapy #slp #autism

I hate saying no to Emmett because whether he is asking with his AAC device or with his words, he is communicating, and I want to honor that. But he also has to learn that I can understand him and still say no. So I started saying “one more” with my finger up to emphasize when something would be the last time. And he started saying it back to me. One more. One finger up. Then it started showing up on its own. He would ask for something, I would say no because he had already had his one more, and he would lift one finger and say “one.” Now sometimes that is the whole thing. One finger. One word. I don’t even get the name of what he’s requesting. I did not set out to teach him this. I was looking for a way to say no that still said I hear you. He took it and made it his. By the time I filmed this compilation, he is doing a better job of asking for what he wants and accepting when those things are not available anymore. #nonverbalautism #specialneedsfamilies #profoundautism #autism #onemore

Ask me why there is a lock on our fridge and the answer is more boring than you think. Our fridge has French doors and they have taken a beating over the years. They do not close properly on their own anymore and are often left open by the kids. Even when we close them, it has to be done a very particular way or they sit open. That is fine during the day when someone notices. It is less fine in the middle of the night when nobody does. The combination lock is the thing that has worked best for us. The one downside is that the code is very easy to knock out of place by accident. Usually I can guess my way back in. Today I could not, so we had to cut it off. At least they come in packs of two. The spare was in the drawer, ready to go. #fridgelock #parentingtips #lockedout

We went to @🎢Canadas Wonderland today and stopped at the @ICEE kiosk for a slushie. There were about eight flavors and it was not self serve so he couldn’t tap the machine with the flavour he wanted. I had to order for him, but he still deserved to pick. ⠀ I opened Glint (by @Ner Chat) typed in the name of every flavor, and had a board in seconds. I handed it to Emmett, and he chose by tapping the symbol and hearing the name of the flavour. ⠀ His AAC device didn’t have those flavors on it and this isn’t the type of resource that I could have known we would have needed in advance. Adding eight buttons in the moment to his AAC takes time, and figuring out where they should live takes longer. Some of the flavors already on his device were not even available at that kiosk. Having a fast way to show him exactly what was there, right then, was the whole point. ⠀ I almost left one flavor off the board because it sounded disgusting to me. Then I thought that is not fair, he should get to see all of them. He picked cotton candy and if I had been guessing, I would have been wrong. ⠀ #aac #nonverbalautism #canadaswonderland #autism #autonomy

This is from after Emmett’s regression and before his DBS surgery. We were living at my parents’ place after we sold our house, waiting to get possession of the one we bought near the specialized school he got accepted into and would eventually be kicked out of for behaviour. If you’ve been here a while you know I say it often. Emmett lost his language but he never stopped singing. A pirate ship cannon became a wrecking ball, and that gestalt went into his device with the original sound clip, because that was the version that meant something to him. We don’t use this page anymore. It was a trial of personally meaningful gestalts, intonation-rich clips, and mitigatable phrases matched to different communication functions. We still honour gestalts. Emmett still sings. His device has 108 symbols per page now and he says so much more with it and with mouth words. That summer was also the first time we tried spelling to communicate. What this video really holds is the transition. Feeling half between so many places. It’s always like that here. Always a transition. Years later we can see the progress. It’s the middle of the night right now. Emmett’s awake. #aac #nonverbalautism #gestaltlanguageprocessing #slp #onthisday

The neighbours filled the water table with shaving cream. Emmett came over, smothered his arms in it, and took it straight to the trampoline. We all laughed so hard. He is autistic, and after his regression joy is something we have to go looking for. Between the sleepless nights, the self injury, and the aggression, we take every bit of it we can find. This one showed up as a clean mess. He bounced for twenty minutes and came off smelling better than he went on. Cheapest spa day on the street. #sensoryplay #autism #creatorsearchinsights

I often run into people who know me or Emmett and say they’ve seen us online. I get that it’s hard to know what to say when you see me online and also get that some of you want your accounts private. I honestly get so excited any time someone who knows us IRL tells me, sends a message, or likes a post. I feel so supported and honestly this account was born out of advocacy. #autismadvocacy #disabilityawareness #childhooddisintegrativedisorder #supporteachother #specialneedsfamilies

Blake got a snow cone machine for his birthday. He wants to make money and compete with the lemonade stands on our street. Today we gave it a test ride in the backyard. It was perfect. Blake could be independent. Meanwhile, while I was setting up the snowcone machine our neighbour (there isn’t a fence between us) was setting up a bouncy house. So we essentially made our own carnival. Considering my other son, Emmett, is autistic with high support needs, going to a real carnival can be intimidating. Having one in the backyard was incredible. #snowcone #specialneedsfamilies #summerfun #carnival #parentingtips

Emmett when from talking and telling stories and jokes to a kid who couldn’t communicate overnight after a severe autistic regression. The first words he got back were song lyrics. I love when he sings. He often sings songs we may not have heard for years. He’s talking more now. Not as much as he did at 4 or even 2 years old. But he’s figuring it out. #profoundautism #nonverbalautism #childhooddisintegrativedisorder #regression #autismparenting

I filled out a parental quality of life form today, the six month post surgery one, and I could not believe how different my answers felt from the last time I sat down with those questions. Emmett had a catastrophic regression at 4 and a half that took his language, his play skills, and his safety skills. He is autistic and has CDD, childhood disintegrative disorder. He is a complex communicator who uses AAC. DBS was a last resort. We had tried medications and therapies for years before we did brain surgery. But now he’s self injuring less and talking more. #deepbrainstimulation #profoundautism #nonverbalautism #childhooddisintegrativedisorder #regression

When Emmett stopped speaking, songs were the first thing that came back. Singing has also been a way for me to fill silences. Often I sing songs I make up. And this was one of the Emmett doesn’t usually join in. But tonight he did. #autismparenting #childhooddisintegrativedisorder #regression #profoundautism #autismawareness